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Dan Bergmann on his autism, and a breakthrough lesson

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Story from a non-speaking autistic person, Dan Bergman, in his own words 

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Story from a non-speaking autistic person, Dan Bergman, in his own words 

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#autism #communication

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Dan Bergmann on his autism, and a breakthrough lesson

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TikTok is teaching the world about autism - but is it empowering autistic people or pigeonholing them?

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#autism #socialmedia

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A quick look at some TikTok stats shows more than 38,000 posts under the hashtag # Autism, with more than 200 million views. The hashtag # ActuallyAutistic (which is used in the autism community to highlight content created by, and not about, autistic people) has more than 20,000 posts and 40 million views.

TikTok is one of the world's leading social platforms, and has exploded in popularity at a time when other social media megaliths have struggled. It has become an important channel for expression for its young usership - and this has included giving autistic people a voice and community.

It's a good start. In some ways TikTok has helped drive discussions around autism forward, and shift outsiders' perspectives. But for real progress, we have to ensure "swipe up" environments aren't the only spaces where autistic people are welcomed.

But first, what is autism?

Autism is not an illness or a disease. It's a lifelong developmental condition that occurs in about one in 70 people. Characteristics of the condition occur along a spectrum. This means there is a wide range of differences among people with autism, all of whom have unique challenges and strengths.

A 2017 survey conducted by myself and my colleagues found more than half of autistic people and their family members felt socially isolated. And 40% said they sometimes felt unable to leave the house because they were worried about negative behaviours towards them.

Many Australians have little knowledge about autism and limited interaction with autistic people. Generally, public attitudes will be shaped by news coverage, online articles and mainstream movies and shows. While media portrayals of autism can positively influence public knowledge, they can also contribute to misunderstanding and increase stigma. It seems the results are mixed.

Studies have found media representations of autism can contribute to stereotypes of what it means to be autistic. For instance, shows such as The Good Doctor and Atypical present autism as a condition of "high functioning, socially deficient, emotionally detached, and heterosexual males from middle-class white families".

As an autistic person, one of the most disturbing things for me is how marginalised our voices are in conversations about autism. You will most often find non-autistic people behind autism-related research, books, movies and TV programs. Most autistic characters are also played by non-autistic actors.

A review of autism-related news published in Australian print media from 2016 to 2018 found only 16 of 1,351 stories included firsthand perspectives from autistic people.

My own research into depictions of autism in print news published between 1996 and 2005 found narratives of autistic people as dangerous and uncontrollable, or unloved and poorly treated.

When autism met TikTok

TikTok has given many autistic people a much-needed platform to speak about autism in creative ways. Some users such as Paige Layle and Nicole Parish have more than 2 million followers. The opportunity to dispel myths and share the diversity of autistic experiences has not been squandered.

Some of the positives for autistic users include opportunities to:

connect with others who are similar to us, and feel less isolated and alone

educate people about some of the lesser known or misunderstood aspects of autism, such as stimming (self-stimulatory behaviour including repetitive or unusual body movement or noises)

share our passions and interests with others (#SpecialInterest) and

raise awareness of the prevalence of and different presentation of autism in females (#AutisticGirl).

However, as with all forms of social media, we should exercise caution before labelling TikTok as the solution to autism exclusion.

Read more: We need to stop perpetuating the myth that children grow out of autism

The other side of it

The most obvious risk is cyberbullying. Many of us will remember the disturbing fad of "faking autism" videos on TikTok. Examples of this included non-autistic people stimming to music (pretending to be autistic), to make people laugh, or because they thought it made them seem cute or quirky.

Turning the autistic experience into a "meme" downplays both our challenges and our strengths. It's hard to describe just how hurtful it is to see your identity used as a joke to entertain others.

Related to this is the posting of videos of autistic people by others without their consent. Whether this is playground bullies tormenting an autistic person, strangers in a shopping centre filming a "naughty kid", or a parent having a bad day with their autistic child - these videos can be used, reused and misused by others.

Moderation by TikTik is an additional concern. In 2019, Netzpolitik.org reported TikTok had policies for moderators to suppress certain content by users they thought were "susceptible to harassment or cyberbullying based on their physical or mental condition".

This included users with "facial disfigurement", "autism" and "Down syndrome". A TikTok spokesperson said this was a "blunt and temporary policy" made "in response to an increase in bullying on the app".

Is the best solution to bullying to silence the voices of potential victims, rather than the bullies?

Read more: How do we make workplaces work for autistic people?

Algorithmic influence

TikTok's algorithm is highly curated to individual users. The app decides what videos to show a user based on: their previous interactions including which videos they watch, like and favourite; video information (such as captions and hashtags); and their device and account settings.

This means users will likely see their own perspectives and beliefs reflected back to them. Autistic people may begin to believe this is the only reality that exists, leading to the creation of a "false reality".

On TikTok, autistic people see an idyllic world where everyone understands and embraces autism. We forget that outside our "echo chamber" there is a world of people living in their own echo chambers.

If we want to see genuine improvement, we have to make autism acceptance and inclusion a priority across public life. We could start by including more autistic voices in TV shows, movies, books and news, as well as more representation in leadership teams and among policy makers.

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TikTok is teaching the world about autism - but is it empowering autistic people or pigeonholing them?

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ActuallyAutistic, #AutismAcceptance and #AutisticAdults are all popular TikTok hashtags. But as much as TikTok can be liberating for people with autism, the conversation can't stop there.

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I changed my hard-to-pronounce name. Then, I changed it back. 

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I changed my hard-to-pronounce name. Then, I changed it back. 

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#inclusion #dignity
Great first-person article making the case for teachers to truly learn students’ names 

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In fifth grade, I moved from Lagos, Nigeria, to New York City. Right away, I learned that my name, Boluwatife (pronounced bow-luh-wah-tea-feh), is a tongue twister for many Americans. They just cannot get it right.

In school, almost everyone butchered my name. With every mispronunciation, the laughter of my ignorant peers was never far behind, saying it sounded like a witch's incantation.

I wondered why my parents had given my younger sister, Tobi, a name that was far easier for people to pronounce in this new country. I was desperate to find something to like about my name. From other Yoruba speakers, I learned that the name Boluwatife means "the will of God." I already knew that my sister's name means "God is great," which added to my suspicion that they favored her over me. I thought my parents had named me after their indecision about having me, that they had left it up to God's will. I never sought out reassurance from them and kept these feelings bottled up.

Meanwhile, I felt burdened by the continued mispronunciation of Boluwatife at school. It was like part of who I am was being dismissed. I wished my middle name, Viola, after my aunt who gave us shelter when we first moved to the U.S., was my first name. I wanted to be like others with an easy name to pronounce.

So, a year into my move, I decided to make Viola my unofficial first name everywhere. Just as Aunt Viola had given us shelter, her name became my haven.

Whenever my teachers took attendance, I watched their facial expressions, and when I saw them pause or look puzzled, I assumed they were struggling with my name. Even though I introduced myself as Viola to everyone, the attendance sheet still showed Boluwatife; that was the one thing I couldn't change. To combat this, I shot my hand up and called out "present," before they attempted to pronounce it. Soon, Boluwatife was rarely mentioned.

Years passed like this until one day, in 10th grade history class, we were learning about foreigners arriving at Ellis Island. As the teacher explained the different ways in which the foreigners tried to better fit in with American cultural and social norms, he said immigrants often changed their names to Western ones. I shifted my gaze from the clock and its loud tick-tocking noises to my small desk as I rested my head on my arm. Then, I heard my name being called.

"Viola here is the perfect example," the teacher said, "She, too, sought out a more Western-sounding name to fit into America." Suddenly, the clock didn't seem so loud. Though I wished for it to drown everything out with its insistent tick-tock sound, the classroom went silent.

In a whisper, I quickly responded, "I'm not a good example because Viola is my name. It's on my birth certificate. I didn't change it." I might as well have said, "I am American! I fit in!" I was shocked to realize that I was still seen as Boluwatife, despite all my efforts otherwise. It was frustrating to admit, but trying so hard to be Viola had made me uncomfortable. I thought it had been worth it to be uncomfortable if it meant I could fit in seamlessly, but I didn't fit in after all.

As soon as the dismissal bell rang, I forcefully packed my stuff and flew out of class. Being called out in class made me feel angry and sad. Sad because a small part of me knew that he was right. I was trying to fit in. Angry because what gave him the right to call me out? He had embarrassed me despite my desperate efforts to blend in.

A year later, in 11th grade, I was in the guidance counselor's lounge during lunch, drawn toward a group of laughing and whispering girls from my European History class. They were huddled over a small, circular table filling out applications to be peer mentors. They asked if I wanted one, and I applied on a whim so I'd be included in a group of people sharing laughs.

To my surprise, I got accepted and, by the next semester, I had six mentees under my wing. The goal of the program was to create a supportive environment for incoming ninth graders, strengthening their relationships with older students to ease the transition to high school.

I made flashcards with conversation prompts and affirmations. I frequently reminded them that their authentic selves were more than enough. In our meetings, some of them shared vulnerable parts of themselves. Usually, I participated in the activities, but I didn't let myself be as vulnerable as they did. At the time, I told myself that it was because I wanted to be the voice of reason or a "strong mentor," but, deep down, I knew that I lacked their courage.

With one of my mentees, let's call him John, I felt as though I was talking to a brick wall. He had his headphones blasting music half the time. The other half, he teased some of my other mentees. He rarely agreed to participate in the activities, not even when I turned to bribery, promising pizza parties in exchange for participation. Despite all this,I kept trying, asking other mentors for suggestions on how I could make him eager to participate.

So, it came as a surprise when, near the end of the program, John texted me: "Yo I preciate u fr, I just got a lot going on but thank you." I teared up. I realized that I was legitimately making an impact on my mentees' lives. I was helping them to see themselves differently. It also made me feel like a hypocrite since I preached self-love, understanding, and appreciation but hid who I was in fear of rejection. This was the wake-up call I never knew I needed. I realized that I had pent-up sadness and was angry with myself. I had been feeling guilty about leaving Boluwatife behind this whole time. I regretted not giving her the chance that she deserved.

Even though we no longer live with Aunt Viola, and my relationship with her has become rocky, I will always be grateful for the name. However, it was time to restart my relationship with Boluwatife and reclaim the part of me that I had changed to fit my distorted idea of what society would accept.

When my mindset changed, so did my ability to see the good in my name. I thought that flying 5,250 miles away from the land where it came from had caused its light and power to dim, but I was wrong.Now, the name Boluwatife gives me the opportunity to choose for myself what path I take in life, the path that suits me best. Bearers of the name are said to overcome turbulence, after all. I used to wonder why I was so unlucky, why I couldn't have a "normal"-sounding name. But I can't and shouldn't dim myself to fit into a crowd.

During the first year of the pandemic and my last year of high school, one of my cousins started calling me "Tife" (pronounced "tea-fe," with the "fe" like the "fe" in fennel). I liked it so much that I switched my name from Viola to Tife on WhatsApp. My family noticed this shift and also started calling me "Tife." They even stopped introducing me as Viola.

At first, I worried that choosing to go by Tife contradicted my renewed relationship with my full name. Then, I realized that Tife is a nickname, no different than Liz for Elizabeth. As the name bearer, I get to have them both.

Recently, for the first time in eight years, I introduced myself as Tife to a group of fellow writers. It felt like I was introducing a reformed version of myself, one that was new, even to me. The wave of confidence surging with my name felt right. These writers were understanding, frequently asking for the proper pronunciation of my name, making sure I was comfortable with their best shot at it. I realize that not every person I meet will treat my name's pronunciation with such patience, but I will conform no more.

My name is Boluwatife Ogunbodede.
A version of this essay was originally published by Youth Communication. Tife Ogunbodede was born and raised in Lagos, Nigeria. She is an upcoming sophomore at CUNY Queens College, where she is a psychology major and a writing minor. Tife is also an assistant project manager at Eleven3seven5, where she is involved with community development/engagement in Ocean-Hill Brownsville and writes the business newsletter.

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First Person: I changed my name. Then, I changed it back.

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In fifth grade, I moved from Lagos, Nigeria, to New York City. Right away, I learned that my name, Boluwatife (pronounced bow-luh-wah-tea-feh), is a tongue twister for many Americans. They just cannot get it right. In school, almost everyone butchered my name.

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Podcast with Dorothy Siegel: How inclusion came to NYC

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Podcast with Dorothy Siegel: How inclusion came to NYC

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#inclusion #nyc

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Dorothy Siegel - an early pioneer for inclusive educational programming for students with disabilities in NYC - tells us the story about how the idea of inclusion for people with disabilities was fought for and won.

Beginning in 1990, Dorothy has innovated and advocated for new special education reform models that led to the launching of NYC's first Inclusion Program at the Children's School in Brooklyn, NY. In 2002, Dorothy's collaboration with Shirley Cohen Of Hunter College and The NYC DOE led to the development of NYC's well regarded ASD NEST program which now serves 1,100 children with autism spectrum disorder all over NYC.

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Fearless: How inclusion came to New York City

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Dorothy Siegel - an early pioneer for inclusive educational programming for students with disabilities in NYC - tells us the story about how the idea of inclusion for people with disabilities was fought for and won. Beginning in 1990, Dorothy ...

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School Suspensions are an Adult Behavior

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School Suspensions are an Adult Behavior

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#behavior #racism

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School suspensions are an adult behavior | Rosemarie Allen | TEDxMileHigh

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Finding Our Strengths: Recognizing Professional Bias and Interrogating Systems

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Finding Our Strengths: Recognizing Professional Bias and Interrogating Systems

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#strengths #ableism
https://youtu.be/lhPr4Dm8Y74?t=667

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#inclusion #specialed

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www.thinkinclusive.us
I spend a lot of time thinking about inclusion.

Most of this energy is spent coming up with ways to explain inclusive education clearly and succinctly so that everyone understands what it is and why it is essential. Because, to me, it is one of the most crucial things we can do for students (disabled or non-disabled).

Here's the challenge. You probably already have thoughts and opinions about inclusion. Maybe you have already decided that the cognitive difficulties or level of autism your child has, would not be appropriate in a general education classroom. Perhaps you have a notion that inclusion is good, but you don't know what it looks like or how to even advocate for it. Or conceivably, you are all-in for inclusive education and want your child in general education 100% of the time, all day every day. In all of these scenarios, we need to take a step back and see the larger picture of how inclusive education fits in our educational system.

When I started as a special education teacher in 2003, I worked in what was called a "Special Day Class." In Pasadena, California, with the majestic San Gabriel Mountains outside my window, I taught my heart out for my 4th, 5th, and 6th-grade students with labels of "moderate to severe" autism.

Back then, my students would spend the entire day in the classroom following a strict routine that I created for them. Moving from station to station, my pupils would learn a modified curriculum. When they finished, they would earn a reward (i.e., playing with a toy, listening to music, or eating a piece of candy).

I felt like we were doing good work. We cared about the students and learned to love their unique interests and quirks. We would start each day reading the local newspaper, taking each section out, and prompting the students to either read the headlines or identify the images.

"Who won the Laker game last night?" I would say, pointing to the box score. Jasper, a student who could read practically anything I put in front of him, bellowed the score, "Los Angeles Lakers 101, Chicago Bulls 94!" Welling up with pride, Mr. A (my paraprofessional) and I gave each other a high-five. "That's right! Kobe is looking good this year."

After newspaper time, we would transition to "circle time." This consisted of reviewing the calendar, days of the week, months of the year, the weather forecast, and singing Roy G. Biv (a song about the colors of the rainbow) complete with the strumming of my guitar.

Following "circle," my students went to check their schedule. Each of my kiddos had an individualized schedule that displayed picture icons designating where they should go. They would grab the image (paired with a word) and then move to the corresponding area of the classroom (i.e., Math, Reading, Play, Computer, Independent Work). I spent hours setting up the initial schedules so that it all ran like a scripted play.

This structure worked for the most part, and the times my students struggled, it typically centered around communication issues. They wanted something, and I either didn't understand what they wanted, or it wasn't available at the time, which caused frustration and often meltdowns or aggression.

I was still going to school at the time because, in California, you could be hired as a special education teacher with a provisional teaching certificate. My teaching program promoted inclusive practices. This meant that it covered models like co-teaching (where special and general education teachers work in the same classroom), collaborating with general education teachers, and strategies for including students with autism (or other low-incidence disabilities) in general education classrooms.

I distinctly remember having a heated discussion with a professor in my program about how they just didn't understand that students with autism needed to be educated with other autistics. "But my students need to be taught routine! How will they learn that in a general education classroom? They can't do the same things everyone else can!"

Instead of debating our differences in philosophy, my professor gave us an assignment. Pick one student who is educated in a self-contained (segregated) classroom and create an inclusion plan.

"And don't pick an easy one, pick a student that you never would think could ever tolerate time in a general education classroom," she said.

I had the perfect one.

Nathan* was a 5th-grade student who had limited verbal abilities and engaged in self-injurious behavior. His verbal stimming was extremely disruptive, and when he got angry would often hit or kick anyone or anything next to him. I never in my wildest dreams thought that he would be successful in a setting with typically developing peers.

I was wrong.

The plan included examining the student's interests, communication skills, and adaptive strengths.

The idea was to discover who Nathan really was, what he liked, and what he was good at.

Next, the plan included planning with a general education teacher a lesson that would take into consideration Nathan's strengths.

Despite all of Nathan's communication and sensory issues, he was a wizard with scissors. In fact, that was one of his favorite things to do. If he wasn't cutting strips of paper or cardboard, he was shredding paper with his hands. Picking up leaves outside and crumpling them in front of his eyes so that he could see the minute pieces fall to the ground was one of his favorite things to do.

The plan began to form. Whatever we were going to do, it would involve cutting.

After a few more planning sessions, the day finally came. It was time for Nathan and me to walk down the long hallway to the classroom for science class. The activity was to create a topography map out of cardboard.

Luckily for Nathan, there was a whole bunch of cardboard to be cut for this activity. As he sat in a desk in a classroom with 35 of his peers, I was astounded at how calm and focused he was cutting to his heart's content.

His task was meaningful, age-appropriate, and for 45 minutes in that science class, he belonged.

Did that one activity set Nathan on a path of full inclusion? No. But what it did do was set me on a way of believing that any student could be successful when certain conditions were present.

Nathan was a turning point for me, and I looked for more ways to include my students in my school.

The other teachers in the school, as well as my paraprofessional, saw the success and bought into my vision. It was like a religious conversion, and I had been baptized in the church of inclusion. That is how I feel when I am talking to people about why inclusion matters. Over the years, I have become an evangelist of sorts.

But this experience wasn't enough for the educators at my school or for me. My students were still segregated despite my efforts to increase their time with their peers. Joining their typical peers in recess and lunch, going to assemblies, and the occasional visit to a general education classroom didn't seem like enough. I wanted to know why I couldn't include all of my students all the time.

I came to work with the cognitive dissonance that I was doing what I loved, but just in the wrong location (a segregated classroom). But then I realized that I wasn't thinking big enough. Through talking to other teachers who were passionate about inclusion, another vision of inclusive education began to form.

Inclusion is not about physical proximity. It is about planning for the success of all students.

Full inclusion doesn't mean students with disabilities (significant or otherwise) should spend 100% of the time in a general education classroom.

If this sentiment is offensive, then inclusion advocates, like me, have done a poor job communicating what inclusion is really about.

Full inclusion is better understood as a mindset and framework for educating students with and without disabilities.

The idea that "we learn better together" is not a new concept. In fact, it is a notion that has been in the refining of academic and peer-reviewed studies for over 30 years ¹.

Consider that there are multiple examples of authentic and thoughtful inclusive education around the United States, Canada, and other parts of the world ². You may have seen inclusion fail with your own eyes. Or you think inclusion only works for specific students. Alternately, you believe that time spent in general education is the most substantial measure of whether a school is inclusive.

Inclusion doesn't exist without a mindset that every student in a classroom, school, or district belongs.

Full and authentic inclusion means total membership in a community. The percentage of time spent with typical peers is only one of several quality indicators ³ of an inclusive education program. There is no guarantee that because your child is present in a classroom with non-disabled students, it means they are included.

Full inclusion is going to look different in every school and every classroom and for every student.

What is non-negotiable when it comes to inclusion is the expectation and desire that everyone belongs (and learns) together.

As prominent inclusive education advocate Lou Brown ⁴ states:

"It is unacceptable for students with significant disabilities to spend 0% of their time in general education classrooms. While better, it is also unacceptable for them to spend all of their time therein. Self-contained regular and self-contained special education are both rejected because each extreme disallows important experiences and opportunities. The preference here is that they are based in general education classrooms in which they would be based in they were not disabled. Then, the individually meaningful amounts of time each need to spend elsewhere should be arranged."

The abysmal fact is that 17 percent ⁵ of students with any disability spend all or most of their days segregated. Having students removed from their typical peers and general education classroom should be a rare occurrence. Today, the practice is widespread.

We need another system. We need to have a system where special and general education teachers work collaboratively for all students.

I want to bring back a word in the vernacular of the inclusive education movement. In 1997, Ellen Brantlinger ⁶ from Indiana University first used the term "inclusionist." She defines the word as those "who oppose pull-out instruction, questions the status quo of special education, and sees a need for an overhaul of the system or discontinuation of special education as a separate system." Rarely is this word ever used to describe people supportive of the inclusion movement, but that is precisely what we are. We recognize that the system is broken. Special education has never been fully funded, it promotes an "us and them" mentality, and teachers barely get any training in how to work with autistic students.

If this is striking a chord, then maybe you are an inclusionist too. Let's get rid of special education and create one unified educational system. We are still years off from a significant restructuring of special education. But let me remind you that universal healthcare was called a pipe dream not too long ago.

Some push back that I receive about a more inclusive vision of inclusive education is that families who support any segregated environments should not get a voice. I disagree. We must not forget the families and individuals with disabilities who prefer separate spaces or classes. If we are not listening to the people, we are supposedly advocating for what exactly are we doing? You don't think we can plan for the success of all students and still support small group learning and separate spaces within an inclusive model? You are not thinking creatively enough.

So, what are we supposed to do? How can we be an inclusionist in an increasingly divided educational climate? Here are a few steps that you can take as you advocate for your child.

First, communicate your vision of inclusion with your school team. Sometimes this looks like a one-page introduction about your child that you give to the team members at the IEP. Many times, the people that are at your first IEP meeting have barely met your child. State from the very beginning (and make the team put it into the meeting notes) that an inclusive education for your child is the priority. If you are further along in your journey, better late than never, just make sure it is on the record.

Next, work with your school team as collaboratively as possible, if possible. As you navigate the IEP process, it may get messy with your expectations for your child and the school team. Stay consistent with the vision that you laid out for your child, and as they grow, give them input on their own life. Do your best to build consensus in your meetings. Still, there may come to a point where hiring an attorney, advocate, or inclusion coach is necessary.

Then, understand the Least Restrictive Environment (LRE) and Special Education case law. You won't be an expert overnight but understand what IDEA says about LRE. Remember that schools make decisions based on data, and your case for inclusion is strengthened if your child is making progress toward their IEP goals and objectives. Try to avoid having too many IEP goals and objectives because it weakens the power of the data. Better to have a few sharply written objectives with reliable data collection than 20 targets where a teacher is spread thin to collect accurate data.

Finally, create IEP goals and objectives that must be tracked in general education. Including typical peers in math and reading goals will ensure that data is taken in general education settings.

What can you do where you are to move inclusion forward, even if it is a small action? If a million of us take one step, that is a million steps in the right direction.

--

*Name changed for privacy purposes.

Footnotes

1. Research Support for Inclusive Education and SWIFT, Swift Schools (2017)

2. A Summary of the Research Evidence on Inclusive Education, ABT Associates (2016)

3. Quality Indicators for Inclusive Building Based Practices, Maryland Coalition for Inclusive Education (2011)

4. How Much Time Should Students with Significant Disabilities Spend in Regular Education Classrooms and Elsewhere, Lou Brown et.al. (1996)

5. Learning with Disabilities: One Effort to Shake Up the Classroom, NPR (2014)

6. Brantlinger, E. (1997). Using Ideology: Cases of Nonrecognition of the Politics of Research and Practice in Special Education. Review of Educational Research, 67(4), 425-459. Retrieved from www.jstor.org/stable/1170517

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An Inclusionist's Manifesto - THINKING PERSON'S GUIDE TO AUTISM

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Photo © Mundial Perspectives | Flickr / Creative Commons [image: A white teacher with shoulder-length straight dark brown hair holding up a globe to a group of young students of varied races, several of whom are raising their hands, all of whom are seen from behind.]

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Emotional Disturbance: How A Controversial IEP Designation Fails Black Boys

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Emotional Disturbance: How A Controversial IEP Designation Fails Black Boys

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#ed #specialed #racism #intersectionality

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Emotional Disturbance: How A Controversial IEP Designation Fails Black Boys

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#inclusion #specialed

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Restructuring Special Education: The School-Based Model

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The NYC system has moved significantly towards a school-based model, but the Focus report’s criticisms still indicate some of the limits of effective education for special education students.

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The Many Benefits of Strengths-Based IEPs

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#strengths #ieps

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The Many Benefits of Strengths-Based IEPs

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Individualized education programs that focus on learner competencies enhance student growth and increase parental involvement.

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NYCDOE Continuum of Special Education Services

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NYCDOE Continuum of Special Education Services

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#nycdoe #inclusion

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#inclusion #media #intellectualdisabilities

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My son Samuel and his disability were the driving motivations for my first film, Including Samuel, and he continues to be the motivation for my work every day. Until schools are welcoming for all kids-even those with complex disabilities-Samuel and other students with disabilities will never have equal opportunities in society. I truly believe it is the greatest civil and human rights struggle of the 21st century. A child's access or lack of access to a quality, inclusive education can make or break their future opportunities. But creating a truly inclusive educational environment is not easy, so films about education need to be complex and balanced.

I don't make films that prescribe easy solutions, because there are none. But I do think my films capture evidence-based practices in action in real schools, through the eyes and lives of educators, students, and families. I'd consider myself an inclusion advocate, but with a journalist's approach to making honest films that don't sugarcoat the complexity of the issues.

How do you choose the subjects for your documentaries?

I love the medium of documentary film because I get to take people deep into the lives of trailblazers that they might otherwise never meet. I always start with some central questions I want to explore, and then I do a lot of research to find people that answer those questions through their lived experiences. For my current documentary, Intelligent Lives, I explore a central question, which is posed early in the film by narrator and Academy award-winning actor Chris Cooper. He asks, "Can any attempt to measure intelligence predict a person's value, or ability to contribute meaningfully to the world?"

The label of "intellectual disability," though better than its predecessors ("mentally retarded," "feeble minded"), is still problematic.

What are we suggesting when we say that someone's intellect is disabled?

As I did exploratory research on the topic, I found that only 17 percent of students with intellectual disabilities are included in regular education. Just 40 percent will graduate from high school. And of the 6.5 million Americans with intellectual disability, barely 15 percent are employed.

There is not another group of Americans that are as systematically segregated and underestimated in modern day society.

I then researched and found three central subjects that would address that question in three different arenas: Naieer (high school), Micah (college) and Naomie (the workforce). These three people raised my own awareness and appreciation for the wide range of possibilities for people with a label of intellectual disability. Naieer's story informs viewers that that students with intellectual disability and autism can be fully included in high school. Micah's story leads people to know that there are thousands of college students with intellectual disabilities attending nearly 300 universities and colleges across the U.S. And Naomie's story illustrates that although the employment rate for people with intellectual disabilities is just 15%, employers who have made a commitment to interviewing and hiring more people with disabilities say the people they hire have become some of their most hard working and reliable employees.

By meeting Micah, Naomie and Naieer, Intelligent Lives will show millions of viewers the power of opportunity and high expectations.

Which of your many works is a favorite success story? Why?

I've filmed so many amazing people, so there there are many success stories. But I'll focus on the success stories that have continued to unfold for Naieer, Naomie and Micah since Intelligent Lives was first released last year.

Naieer is now taking college classes, including an art class he recently took at Mass College of Art! Like my son Samuel, he also continues to receive transition supports from his school. He's been frustrated by the lack of employment opportunities, but he's about to start professional training in another one of his passions - cooking - and he hopes that will help him break into the restaurant industry. We sell prints of two of his paintings on our website, and all proceeds from those art sales go to the art program at his Henderson high school.

Naomie is still working at Empire Beauty School and loving it. Her brother Steve continues to be a central part of her life. Steve, who has a college degree in business, has a job he loves as a direct support professional for other people with disabilities.

Micah is co-teaching two classes at Syracuse (for pay), and has a vibrant social life. He volunteers at Planned Parenthood and also helps mentor students entering the Inclusive U program at Syracuse. He continues to convene his Circle of Support at Syracuse to help him work towards his personal and professional goals.

How does your work serve as a catalyst to transform our society into a more inclusive environment?

My " Inclusive Communities" project at the Institute on Disability at UNH is part of our non-profit organization, and my work is funded in large part through grants. So we make sure to track the measurable impact from the films and the associated educational materials we create for each project. We surveyed thousands of people who saw INTELLIGENT LIVES, and the results have been affirming:

98% of viewers indicated that INTELLIGENT LIVES helped them understand the concept of "presuming competence" -that everyone has talents and is a full and valuable participant in society.

97% of viewers indicated that INTELLIGENT LIVES helped them understand that intelligence cannot always be measured, such as social/emotional intelligence, artistic intelligence, etc.

88% of viewers indicated that seeing INTELLIGENT LIVES made them more likely to interview and/or hire a young adult with a disability for a part-time or full-time job.

We also collect anecdotal examples of impact from film screenings. One moment stands out. Film "star" Naieer was part of the post-film panel at the premiere in my hometown, Concord, NH. Naieer, who has ASD, stood before 500 people in an elegant performing arts center working so hard to answer questions. At one point, for a full minute, the entire audience waited for him to give his answer in a tightly constructed sentence. I don't honestly remember what he said. What I remember was the unconditional feeling in that room that whatever Naieer had to say was worth waiting for. And that it was not Naieer's problem that he had trouble getting the words out - it was society's problem that we are typically so impatient in our communication. Oh, and after the screening Naieer had an exhibit of his paintings and sold out in about 20 minutes, walking away with about $2000 and a huge smile!

What do you think are some of the biggest challenges still facing inclusion today?

Today, inclusion is still happening inconsistently throughout the country. It varies state-to-state, town-to-town and classroom-to-classroom. Joe Petner of the Haggerty School (featured in my film Including Samuel) says that we should not have to reinvent inclusion every time we try it; that for inclusion to be successful, it has to be a transferable model, not dependent on extraordinary leadership or funding. He says the most important factor in making inclusion work well is a community's commitment to the spirit of inclusion; the details will fall into place if that overall commitment is there. I do think leadership at the administrative level is critical to making sure teachers have the training and planning time they need to be successful.

What are some ways you address those challenges in your films?

I'll use my latest project, Intelligent Lives, as an example of how I approach these issues from the start of the process. I was motivated to make a film that focused on young adults transitioning from high school into college and career largely because my own son Samuel is now in his late teen years, and is figuring out how he wants to transition into adulthood. Samuel is a recent high school graduate, had a job last summer, and is taking - and passing - college classes.

But people often talk to Samuel like he's five-years-old, because he doesn't fit their vision of what it means to be "intelligent." He has cerebral palsy and uses a wheelchair and a communication device. Chris and Marianne Cooper, key partners on this film, had the same experience with their son Jesse.

Educators, parents, and disability rights leaders have told me similar anecdotes, convincing me that this narrow perception of what it means to be "intelligent" may be the single greatest barrier for people with disabilities.

What if I could make a film that blew up the notion that there was any way to quantify this amorphous thing we call "intelligence"?

I'm not a person with a disability, so I don't claim to speak for people with disabilities. But I can amplify the perspectives of advocates through my films and events. I've tried to commit to the standard of "nothing about us without us" as much as possible for the rollout of this film, so we've recruited dozens of youth with disabilities to take part in post-film discussions (and many community and university screening hosts have done the same without my involvement). To see the power and confidence that comes from a young adult with a disability sharing their life experiences with a room packed with strangers has, for me, been the most moving part of our year-long screening tour.

About the Author

Dan Habib, the director/producer of Intelligent Lives, is the creator of the award-winning documentary films Including Samuel, Who Cares About Kelsey?, Mr. Connolly Has ALS and many other films. Habib's films have been featured in dozens of film festivals, broadcast internationally, nominated for Emmy awards and translated into 17 languages for worldwide distribution. Habib is a filmmaker at the University of New Hampshire's Institute on Disability.

Habib gave a widely viewed TEDx talk, "Disabling Segregation," received the Champion of Human and Civil Rights Award from the NEA, and the Justice for All Grassroots Award from the American Association of People with Disabilities. In 2014, Habib was appointed by President Barack Obama to the President's Committee for People with Intellectual Disabilities. Habib and his wife, Betsy McNamara, live in Concord, NH, with their sons Isaiah, 23, and Samuel, 19.

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My son Samuel and his disability were the driving motivations for my first film, Including Samuel, and he continues to be the motivation for my work every day. Until schools are welcoming for all kids-even those with complex disabilities-Samuel and other students with disabilities will never have equal opportuni

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#language #ableism #expert

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This resource seeks to provide tips on rights-affirming language and narratives preferred by people with disabilities. It is a starting point intended to foster communications that affirm human dignity, reflect the power and autonomy of disabled people, and support the advancement of disability justice and rights.

Too often, mass media reinforces negative disability narratives and stereotypes. Adding to the confusion, non-disabled people often have limited interaction with people with disabilities, which sometimes leaves them uncertain about using the "right" language. This can hinder the critical conversations, learning, and interactions necessary to strengthen disability inclusion in our organizations and communities. That said, learning about language must be paired with genuine changes in attitudes and practices that commit organizations to disability inclusion.

Talking the Talk of Disability Inclusion

Use the terms "people with disabilities" or "disabled people" rather than euphemisms.

These terms are reflective of "person first" language and "identity first" language, respectively. According to The Arc, "people first language emphasizes the person, not the disability. By placing the person first, the disability is no longer the primary, defining characteristic of an individual, but one of several aspects of the whole person. It eliminates generalizations and stereotypes, by focusing on the person rather than the disability." Click here to view a video conversation with Julie Petty, a disability advocate who prefers person first language.

Identity first language intentionally places the disability first, recognizing it as part of a person's identity. Remember, language is personal and every person will have their own preferences. It is best to honor each individual's preference. And be sure to keep in mind that terms like "differently-abled," "physically challenged," "handicapable," or "special needs" are widely considered patronizing. Avoiding the word "disability" can inadvertently reinforce stigma.
Further Reading
Avoid Framing Disability as a Negative

Use language and narratives focused on the strength and agency of disabled people. Relatedly, accessible devices, such as wheelchairs or hearing aids, do not "confine" people with disabilities but advance inclusion and access. The term "accessible" is preferred to "handicapped," which is outdated and unacceptable (i.e. accessible parking instead of handicapped parking).

Frame ableism and disability discrimination as a collective, systemic problem.

Ableism is a structural inequity and should be portrayed as such. Using the terms "overcome" or "in spite of" inaccurately suggests that the onus is on the disabled person to overcome discrimination through personal effort, or that a disability identity is inherently a problem to be solved. The problem is not the individual, but structural discrimination.

Use words and framing that reflect political and social power.

People with disabilities are active community participants and leaders and should be portrayed as such. Communications should depict disabled people interacting with those with and without disabilities. Avoid using words that sensationalize disability or connote pity, such as "suffers from," "victim of," or group designations like "the blind."

Portray people with disabilities in a balanced way, not as heroic or inspiring.

It's patronizing to portray a person with a disability as inspiring simply because they live their life, attend school, graduate from college, and go to work. When sharing stories about disabled people, avoid attributing their success to superhuman powers (also called "super crip"), which may reinforce ideas that disabled people must be exceptional to be valued.

Language guidance

Please note the below is a sample rather than a comprehensive list.

accessible parking or accommodations

handicap accessible

children with disabilities

special needs children

Deaf, hard of hearing
(The uppercase "D" in "Deaf" is often used by people who culturally identify as Deaf
and share a common language, American Sign Language.)

dumb

non-disabled person, person without a disability

able-bodied, normal, whole

non-verbal or person who communicates non-verbally

mute

Person with autism, Autistic person
(Similar to the use of Deaf, some people prefer identity-first language and capitalization of A utistic.)

person who had a stroke

stroke victim, suffered from a stroke

person with a congenital or developmental disability

deformed, person with a birth defect

person with epilepsy or a seizure disorder

spastic, person who has "fits"

person with an intellectual disability

slow, mentally retarded, dim-witted

person with a learning disability

slow learner, retarded, stupid

person with a physical disability

crippled, handicapped, deformed, lame

person with a psychiatric or psychosocial disability or with a mental health diagnosis

crazy, maniac, lunatic, moron, mad, demented, schizo, psycho, feeble-minded

person of short stature, little person, dwarf

midget

person with a spinal cord injury, quadriplegic, paraplegic

incapacitated

wheelchair-user

wheelchair-bound, confined to a wheelchair

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Disability and Language - Disability & Philanthropy Forum

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This resource seeks to provide tips on rights-affirming language and narratives preferred by people with disabilities. It is a starting point intended to foster communications that affirm human dignity, reflect the power and autonomy of disabled people, and support the advancement of disability justice and rights.

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#inclusion

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#expert #autism #intersectionality

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3. Dismantling Racism & Ableism - Learn Play Thrive

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Dismantling Racism & Ableism with Lydia X. Z. Brown Lydia X. Z. Brown is an autistic attorney and disability justice advocate who specifically focuses on violence against multiply-marginalized disabled people. In this episode, join us as we: – Dive deep into how white supremacy and white privilege p…

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#specialed #reference

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When it comes to special education, you may run into terms and jargon that you're not familiar with. Here are key IEP and special education terms and abbreviations you may see and hear.

annual goals: The IEP document lists the academic and functional (everyday) skills the IEP team thinks a student can achieve by the end of a school year. These goals are geared toward helping students take part in the general education curriculum. IEP goals need to be realistic and measurable . Many schools write SMART goals . (SMART stands for Specific, Measurable, Attainable, Results-oriented and Time-bound.)

Individualized Education Program (IEP): An IEP outlines the program of special education instruction, supports, and services kids need to make progress and thrive in school. Some people refer to the written document that outlines this as the IEP (in which case p can stand for plan).

Individuals with Disabilities Education Act (IDEA): The nation's special education law. IDEA is a federal law that guarantees all students with disabilities access to a free, appropriate public education .

Review this list of terms before special education meetings to refresh your memory.

Not all of these terms will apply to all students.

Ask the IEP team to explain any terms you don't understand.

About the Author

About the Author

The Understood Team is made up of passionate writers and editors. Many of them have kids who learn and think differently.

Reviewed by

Reviewed by

worked as a classroom teacher and as an early intervention specialist for 10 years. She is the author of Amanda Morin The Everything Parent's Guide to Special Education. Two of her children have learning differences.

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When it comes to special education, you may run into terms and jargon that you're not familiar with. Here are key IEP and special education terms and abbreviations you may see and hear. annual goals: The IEP document lists the academic and functional (everyday) skills the IEP team thinks a student can achieve by the end of a school year.

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People with Intellectual Disability | Jane Akinyi

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People with Intellectual Disability | Jane Akinyi

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#intellectualdisability #expert

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People with intellectual disabilities have rights ft. activist Jane Akinyi #DisabilityInclusion

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Intersections b/w Ableism and Anti-Black Racism | D'Arcee Neal

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Intersections b/w Ableism and Anti-Black Racism | D'Arcee Neal

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#ableism #intersectionality #racism #expert

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D'Arcee Neal Addresses Intersections Between Ableism and Anti-Black Racism

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#inclusion #ableism #expert

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High Expectations for Students with Multiple Disabilities

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High Expectations for Students with Multiple Disabilities

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#functionalcurriculum #standardsbasedcurriculum

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A special education teacher shares insights on adapting the Common Core Essential Elements for students with multiple impairments.

I'm a special educator, serving some of the most severely cognitively and physically impaired students on the special education continuum. Most students in our severe multiple impairment (SXI) classrooms do not have the use of their hands or arms, and 95 percent are completely nonverbal. Many have impaired vision or hearing, are tube-fed, have tracheotomy tubes, or have seizures or complicated behaviors that interfere with learning. These disabilities affect less than 1 percent of the population.

We service our students in a center-based special education building. Six years ago, our work focused on tending to their complex medical needs, addressing behaviors, prioritizing life skills, and working toward independence. This was a lot to do, and we did it well. Our students had academic work, but it wasn't our primary focus.

As a center-based teacher, I was asked to participate in a committee at the county examining a new set of state standards, the Common Core Essential Elements. These were based on the Common Core and were designed for students with special needs in Michigan.

As these new academic standards were revealed to the committee, my colleagues in the room became upset. They pleaded with the presenter to give our kids credit for the things they can do. People said it would be impossible for our kids to meet the standards.

But what if we didn't assume that meeting the standards was impossible? What if our students with the most severe impairments were presented material similar to their grade-level peers?

Implementing the Common Core Essential Elements

We decided to use the Common Core Essential Elements as our road map, detailing the destination for our students; however, we knew the route to get there would be much different from that of their special education peers with mild or moderate impairments.

We began our journey by examining our philosophy, and made a decision to expose our students to the new standards and see what would happen. It was an important place to start.

Introducing academic content meant lots of adaptations-creating visual representations of concepts; using voice output devices, picture cards, adaptive equipment, braille materials, and 3D objects for our students with visual impairments; different types of equipment and technology for our students with physical limitations; and lots and lots of lesson preparation.

This transformation over the past six years was championed by our school principal, who created a school culture that made it safe for us to fail as long as we tried again.

We did not abandon the focus on self-care and independence, but worked on those skills as opportunities arose naturally throughout the day. We bought lots of books and built a school library, and our teachers dove in to adapting age-appropriate books. This included literary classics like To Kill A Mockingbird and Holes because every kid deserves to meet Scout Finch and Stanley Yelnats.

We invested time in our professional learning communities to work with one another. We studied the Four Blocks literacy program-which focuses on guided reading, self-selected reading, writing, and working with words. "I Can" statements were written in four levels of difficulty for each standard, which helped describe how our most severely impaired students interacted with the Common Core Essential Elements. We created lots of materials and increased direct instruction time.

Indications of Progress

Slowly we started to see changes. There were moments in classrooms that let us know we were headed in the right direction. This didn't necessarily mean mastery of material-it was more a matter of decreased levels of prompting needed to get students to engage on some level with instruction.

Later, the county brought in training on a writing curriculum for our students. Once again we heard that it would never work. But our teachers brought the curriculum back to the center and dove in. They began with the writing mini-lessons and picture topic boards, and adapted alphabet boards students would use to choose letters to form words.

A moment of success: Brandon, a student with severe multiple impairments, wrote a sentence using one of our adapted letter boards. He selected a picture of himself and wrote, "I am hansom." For every win like this we have another obstacle or a failed lesson, but we always try again.

The example of Brandon teaches us a lot of things, but my top two takeaways are that teaching in this population is a marathon-with milestones few and far between-and that if we act as if students can do something, they just might be able to.

As Martin Pistorius writes in Ghost Boy: The Miraculous Escape of a Misdiagnosed Boy Trapped Inside His Own Body, "If someone does not expect or is not expected to achieve, then they never will." Our work shows that if we do expect someone to achieve, they may.

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High Expectations for Students With Multiple Impairments

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A special education teacher shares insights on adapting the Common Core Essential Elements for students with multiple impairments. I'm a special educator, serving some of the most severely cognitively and physically impaired students on the special education continuum.

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#udl #engagement

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The leadership and teachers at North Carroll Middle School in Carroll County, Maryland are working to include students with significant cognitive disabilities in general education classes. In 2019-20, Carroll County Public Schools (CCPS) and TIES worked together to train teachers on how to implement the Universal Design for Learning (UDL) framework as a part of their co-planning, co-teaching and co-assessing. Their work helped inform the 5-15-45 tool that you and your teams can use too!

Let's follow one team in their UDL and collaborative planning:

Meet The Team

The Classroom

In his general education class of 24 students, Mr. Harrington, the 6th-grade social studies teacher has three students who have significant cognitive disabilities, as well as a few students who have more high incidence disabilities such as learning disabilities and Attention Deficit Hyperactivity Disorder (ADHD).

Collaborative Process

Mr. Turek, the CCPS Inclusion Coach, and TIES Center personnel trained district content specialists and the middle school faculty and staff on how to make the general education curriculum accessible and meaningful for all students, including students with significant cognitive disabilities. General and special education teams, including paraprofessionals, met regularly with Mr. Turek on this process:

1. Begin with the grade-level standards and UDL framework: Where are the barriers to learning?

2. Review content and materials for individual needs: What individual barriers and needs exist?

3. Adapt materials and content only as much as necessary: Are there adaptations or modifications needed for individual students?

4. Repeat as needed for additional students: Are there changes needed for other students?

5. Review materials and instructional strategies: Do they maintain the essential parts of the standard?

While the regular meetings stopped when COVID began, the process continued.

Example of What It Looks Like

Begin with the grade-level standards and UDL framework. Where are the barriers to learning?

Unit grade-level goals based on the social studies standards:

Students will be able to answer questions and organize information about chronology in history.

Students will gain content vocabulary for social studies.

Students will be able to discuss how societies have changed over time.

Mr. Harrington chose his lesson and materials with an eye toward the UDL framework of providing multiple means of engagement, representation and action, and expression. The seven images below are samples of the social studies PowerPoints that are used to teach all students.

Review content and materials for individual needs: what individual barriers and needs exist?

Most of these slides had multiple means of engagement, representation, and action and expression, because:

key information was highlighted

information was shared visually, auditorily, and textually

graphic organizers were embedded

background knowledge was woven throughout the unit

When Mrs. Calvin (special educator) and Ms. Holcombe (speech language therapist) reviewed the materials for students on their caseloads with speech and language support needs, learning disabilities, ADHD, etc., they found three slides had potential barriers.

Adapt materials and content only as much as necessary

Mrs. Calvin and Ms. Holcombe made the following changes to meet individual student needs and to support the learning standard:

condensed the text, removed some details, and highlighted the topic of each slide, decreasing executive functioning requirements

combined slides 4 and 6, reducing the cognitive load

moved the questions about geologists to the same page as the definition, lessening the amount of visual tracking and short-term memory needed

provided an answer key to guide student answers for the timeline activity, supporting word recognition, spelling, and movement needs

made the matching activity a more concrete graphic organizer with specific boxes for each specialist, making it more accessible

Repeat as needed for additional students.

Mr. Turek (inclusion coach) and Mrs. Baughman (paraprofessional) then looked at the materials to determine if there were additional supports needed for some of the students with significant cognitive disabilities.

Mr. Turek and Mrs. Baughman made the following changes:

color-coded answers in the text, to focus attention and support answering questions

printed the presentation as a booklet for students in the hybrid instructional model, for easier access

condensed timeline activity to reduce the complexity of the text

provided two options for engaging with the timeline activity, for accessibility and to support generalization across materials

digital version drag and drop slide

hybrid version velcro and paper activity

Other possible supports not evident in these slides include:

providing objects used in an archaeology dig instead of only using the pictures for students with low or no vision

embedding instruction on number identification or a calendar or grid for help with foundational skills

assigning paraprofessional support via chat boxes or during asynchronous times of the day

Review materials and instructional strategies to ensure they maintain the essential parts of the standard.

Mr. Harrington then reviewed each version to ensure the changes remained true to the concepts being taught.

While the barriers to learning changed when school moved to online and hybrid instruction, the foundations of good curriculum and instruction for students with significant cognitive disabilities remained the same.

Because teamwork really does make the dream work.

Author(s)

Mark Turek

Deborah Taub

Jesse Harrington

Jackie Baughman

Mary Beth Calvin

Michaela Holcomb

Distance Learning Series: DL #30, March 2021

Turek, M., Taub, D., Harrington, J., Baughman, J., Calvin, M. B., & Holcomb, M. (2021). An Example of UDL and Online Collaboration(DL #30). TIES Center.

TIES Center is supported through a cooperative agreement between the University of Minnesota and the Research to Practice Division, Office of Special Education Programs, U.S. Department of Education (# H326Y170004). The Center is affiliated with the National Center on Educational Outcomes (NCEO) which is affiliated with the Institute on Community Integration (ICI) at the College of Education and Human Development, University of Minnesota. The contents of this report were developed under the Cooperative Agreement from the U.S. Department of Education, but do not necessarily represent the policy or opinions of the U.S. Department of Education or Offices within it. Readers should not assume endorsement by the federal government. Project Officer: Susan Weigert

The National Center on Educational Outcomes (NCEO) leads the TIES Center partnership. Collaborating partners are the Arizona Department of Education, CAST, University of Cincinnati, University of Kentucky, University of North-Carolina-Charlotte, and the University of North Carolina-Greensboro.

TIES Center

University of Minnesota

215 Pattee Hall

150 Pillsbury Dr. SE

Minneapolis, MN 55455

Phone: 612-626-1530
www.tiescenter.org
This document is available in alternate formats upon request.

The University of Minnesota is an equal opportunity employer and educator.

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Building Engagement with Distance Learning | DL #30: An Example of UDL and Online Collaboration

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The leadership and teachers at North Carroll Middle School in Carroll County, Maryland are working to include students with significant cognitive disabilities in general education classes. In 2019-20, Carroll County Public Schools (CCPS) and TIES worked together to train teachers on how to implement the Universal Design for Learning (UDL) framework as a part of their co-planning, co-teaching and co-assessing.

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#expert #ableism
A great resource with writings and podcasts from disabled folxs about a range of topics around disability

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#CripTheVote Twitter Chat Mapping Our Intersectional Futures December 7, 2016, 7 pm Eastern Guest Hosts: Dominick Evans, Sandy Ho, Talila "TL" Lewis and Vilissa K. Thompson Andrew Pulrang, Gregg Beratan, and ... Continue Reading 12/7 #CripTheVote Chat: Mapping Our Intersectional Futures

#CripTheVote Post-Election Chat Thursday, November 10, 2016 7 pm Eastern Hosted by Andrew Pulrang, Gregg Beratan, and Alice Wong, #CripTheVote Twitter chats explored various policy issues important to people with ... Continue Reading 11/10 Post-Election #CripTheVote Chat: #WhatsNext

From October 14-16, Sins Invalid returns to the stage this year in San Francisco with "Birthing, Dying, Becoming Crip Wisdom." From Sins Invalid's website, the show is: A journey through genesis, transformative ... Continue Reading #CripWisdom: Interview with the Artists of Sins Invalid

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Disabled People of Color - Disability Visibility Project

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CripTheVote Twitter Chat Mapping Our Intersectional Futures December 7, 2016, 7 pm Eastern Guest Hosts: Dominick Evans, Sandy Ho, Talila "TL" Lewis and Vilissa K. Thompson Andrew Pulrang, Gregg Beratan, and ...

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#inclusion

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Educators are tasked with ensuring that students with significant cognitive disabilities have access to and make progress in the general education curriculum. Research shows that these students can acquire knowledge and skills tied to a wide range of grade-level standards and in every content area utilizing a variety of instructional strategies. Inclusive instruction is instruction designed to be accessible to a wide variety of learners. Inclusive instruction ensures that students with significant cognitive disabilities are presented accessible and engaging instructional activities, and are provided the accommodations and modifications to complete learning tasks alongside their peers.

Resources on Inclusive Instruction

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Educators are tasked with ensuring that students with significant cognitive disabilities have access to and make progress in the general education curriculum. Research shows that these students can acquire knowledge and skills tied to a wide range of grade-level standards and in every content area utilizing a variety of instructional strategies.

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#communication

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#social #relationships

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A major part of one's quality of life is impacted by peer relationships. Connections and engagement with peers open up new opportunities for learning and belonging and fill our need to be a vital and important member of communities. While this is particularly true for students with significant cognitive disabilities, often their peer relationships are limited, variable and dependent on those who are paid to be part of their lives, such as related service providers and paraprofessionals. Research has shown the power of peers for students with significant cognitive disabilities in terms of growth in their communication skills, social-emotional skills, progress on individual goals and access to and using natural supports in their environment.

Resources on Peer Engagement

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A major part of one's quality of life is impacted by peer relationships. Connections and engagement with peers open up new opportunities for learning and belonging and fill our need to be a vital and important member of communities.

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OCALI: Planning to Meet the Needs of Diverse Learners

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OCALI: Planning to Meet the Needs of Diverse Learners

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#specialized #hlp

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Providing daily standards-based instruction for learners with complex and multiple disabilities, such as autism and deaf-blindness, requires a variety of materials, strategies, and differentiation. Quality instruction cannot be provided without detailed, collaborative pre-planning . Planning is essential to the delivery of high quality instruction. Plans should include the identification of learning targets based on both academic standards and transition skills and concepts such as social emotional skills and life applied skills. Planning should include the integration of Universal Design, differentiation and individualized instructional strategies, tools and interventions. This section of the website provides guidance and resources as you plan to meet the needs of diverse learners across all learning environments (LRE's). Discussion will include unit planning, collaborative tiered planning (MTSS tiers of support), and daily planning. Co-planning is also addressed in further detail as it aligns with the Ohio Improvement Process (OIP) and State Professional Development Grant (SPDG) work around equity and inclusivity.

Important Concepts:

Planning for ALL students means that "tiers of supports" and instructional methods will be needed

Pre-planning directly aligns learning targets and standards to instruction and assessment

Planning should address and include both pre and post assessments, ensuring they are universally designed and tiered so all students can show what they know

Student specific accommodations, assistive technology (AT), and scaffolds should be included in tiered plans to ensure that individualized education program (IEP) requirements are met

Look to Science and Social Studies standards as they contain concepts that can guide unit themes at each grade level or grade band

Identify tools and materials for each lesson in advance so that they can be gathered and/or created ahead of time

Self-Check:

Are pre and post assessments accessible to all students so that they can each show what they know?

Are materials used in teaching each lesson individualized or adapted to meet the learner's needs/challenges and strengths?

Is the activity aligned to learning standards that are an age/grade match for all learners in the class?

Does the assessment measure student knowledge of the pre-determined learning target/standard?

How might having a plan change the outcomes for one or more students in the class?

Why are some students not participating or engaged in class activities? Could access to prepared materials change their ability to participate?

Planning Self-Assessment Checklist

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ohio center for autism and low incidence

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Ohio Center for Autism and Low Incidence

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Planning to Meet the Needs of Diverse Learners

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Ohio Center for Autism and Low Incidence

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#specialized #hlp

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In partnership with the Collaboration for Effective Educator Development, Accountability and Reform (CEEDAR), the Council for Exceptional Children has developed and published a set of high-leverage practices (HLPs) for special educators and teacher candidates.

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#communication #models #aac

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#relationships #community

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#relationships #community

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Growing up, my favorite teacher, by far, was Mr. Collins, my AP calculus teacher at Huron High School. The class was tough - more than I thought I could handle. But Mr. Collins never let me fail. He made sure I was present and engaged, stayed with me after class when I needed extra help, and gave me rides home when necessary.

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#community #relationships #social

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The secret kindness agents | Ferial Pearson | TEDxOmaha

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#social #relationships #community

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I teach a class of fourth graders with a span of academic skills, developmental characteristics, and cultural and economic backgrounds. If I had to describe what makes such a diverse class work and learn together productively, I'd start with one word: Relationships.

The relationships we form with each other are the foundation for a strong learning community. People who know and care about each other are more likely to listen to each other with respect, to support each other in taking the risks inherent in learning, and to show compassion when mistakes are made.

I'm lucky to teach at a school where all the teachers invest time and energy in building relationships with and between students. As a result, by the time students reach fourth grade, they've been making meaningful connections for several years and many of them know each other quite well.

But there's always more to learn. One of my challenges as an upper grade teacher is to help students who've spent a lot of time together see that everyone is always continuing to grow and change. I want students to move past opinions they may have already formed, and to be open to making new connections.

Making relationships matter

So I've made "learning about each other" an explicit focus in fourth grade. I build opportunities for students to share their interests, wonderings, and experiences into our school days. To encourage active listening, this sort of sharing usually concludes with a round or two of "Who Remembers?" in which I invite the group to recall "Who shared that their favorite food is a fruit?" or "How many of us shared about a nonfiction book today?"

I also use games and playful challenges to help students learn about each other. I give them conversation ideas for lunchtime, like talking about something they're looking forward to this month. Or I tell them that they're grouped together at lunch because of something they all have in common, and their job is to find out what that commonality is. All through the year we do activities such as Four Corners, Commonalities, and Human Treasure Hunts -sometimes as a way to form groups, sometimes as energizers, and sometimes just for the sake of learning more about each other.

What have we learned so far?

A few weeks into the year, we do an activity that has the students documenting what they've learned about each other so far. Each student puts out a sheet of paper on their desk, and everyone walks around adding facts they recall about a classmate to that person's paper. Our aim is for each paper to have at least five facts. And our challenge, I explain, is to recall things the person has said, rather than writing opinions we've formed. We brainstorm a list of topics people have shared about to jog our memories.

As the students walk around adding comments to one another's sheets, I watch to see whose sheets are filling up more slowly and add to those papers myself, using notes I've taken during sharing times. Here are examples of facts we've recalled when we've done this activity:

Haroon was born in Faisalabad, plays soccer, has two cats, loves Minecraft, and reads graphic novels.

Jenny loves her grandparents' cabin, is going to be in a wedding, speaks two languages, loves sushi, and is learning to do a flip.

Amin has a dog, loves wrestling, loves building with Legos, wants to read more this year, and has a two-month-old baby brother.

At the end of the activity, we display all students' sheets around the room, and throughout the year we add to them as we learn even more about each other.

This exercise can be quite powerful for students. Seeing how much their classmates know about them helps children feel significant, and seeing the types of things classmates wrote-sharings heard, not opinions formed-shows children that they're safe in this classroom. The papers are real evidence that class members have been listening and that they take care of each other. As one student reflected, "I felt happy. At first I was nervous about what people would write, but I kept checking my sheet and it was all things I said."

Deliberate laying of groundwork

As the year goes on we'll continue to learn about each other-what we have in common, what makes us each unique-but it's the deliberate relationship building at the beginning of the year that lays the groundwork for what lies ahead.
Michelle Gill teaches at Garfield Elementary School in Springfield, Virginia. She is a Responsive Classroom consulting teacher.
Tags: Building Classroom Community, Conversation Skills, Listening Skills

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I teach a class of fourth graders with a span of academic skills, developmental characteristics, and cultural and economic backgrounds. If I had to describe what makes such a diverse class work and learn together productively, I'd start with one word: Relationships. The relationships we form with each other are the foundation for a strong learning community.

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Strategic Participation in Online Class Meetings for Students with SSN

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Strategic Participation in Online Class Meetings for Students with SSN

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#engagement #instruction #remote

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Strategic Participation in Online Classes for Students with SSN

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#specializedinstruction

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Welcome to TASH's resource library. All resources are placed under one of the six categories below. For ease of navigation, click on a category below to be directed to a set of resources.

Inclusive Education

Delivering on Equity: Implications for Decision-makers
How Change Occurred at the Stoughton Area School District: Lessons from a Knowledge Development Site
Inclusive Education and Implications for Policy: The State of the Art and the Promise Leading Education Reform Initiatives: How SWIFT Coordinates and Enhances Impact
School Discipline Policy Considerations in a SWIFT Framework
TASH Frequently Asked Questions About Inclusive Education
Will Cameras in Classrooms Make Schools Safer?
Dispelling the Myths of Inclusive Education

College Accessibility for Student with Disabilities: Scholarships & Financial Aid
This webpage contains a handy data set meant to help people with disabilities find the financial help that can take them through college to graduation.

College Resources for Students with Disabilities
With the advances of adaptive technologies and trend toward progressive legislation, prospective college students with disabilities now have countless resources available to make their transition to postsecondary education less stressful. On this webpage you can find specific information and resources on a variety of different disabilities, learn how to make the transition into the workforce easier, and find out what your legal rights on campus are.

College Programs for Students with Intellectual Disabilities
This webpage contains information about various college programs and funding opportunities to support students with intellectual disabilities and available support services and resources on today's college campuses.

Community Living

Community Living and Participation fro People with Intellectual and Developmental Disabilities
This paper, released by AUCD and AAIDD, describes how both organizations think the next 25 years of the ADA should translate into access, opportunity, and support for people with disabilities. This work has been shaped by two primary sources: the voices of people with disabilities themselves and the research evidence on achieving the best possible outcomes for people with disabilities. These sources, of course, have also been shaped by our nation's laws and policies, the most significant being the ADA. (7 pages)

Questions and Answers About The Home and Community Based Services (HCBS) Settings Rules
Includes common questions and answers about the final rules regarding the settings of Home and Community-Based Services (HCBS) released in January 2014. These rules require HCBS settings to provide opportunities for participants to engage in community life, have access to the community, control their personal resources, and seek employment and work in competitive settings. States have up to five years (until March 2019) to come into compliance with the rules. (6 pages)

HCBS: Creating Systems for Success at Home, at Work and in the Community CBI Consultants on Person Centered Planning
The research compiled in this report can help guide state policy makers, service providers, and people with disabilities and their advocates in a collaborative effort to align support systems with the Olmstead decision and the requirements of the HCBS regulations. (100 pages)

Letter to the Center for Medicare & Medicaid
This letter is written to the Center for Medicare & Medicaid on behalf of a coalition of 11 disability and aging organizations advocating for quality implementation of the Settings Rule, including TASH. The letter discusses the Home and Community Based Services (HCBS) settings regulations and trends among state transition planning. The letter outlines several issue areas that are key to a successful state transition plan, including examples from specific states.

Conversations that Matter Online Conference Center from Broad Reach Training
Kunc and Emma Van der Kleft provide online virtual conference site with an ever-expanding collection of videos of thought provoking interviews with well-known advocates, thinkers, and trainers. High quality values based information and resources on disabilities, community inclusion, and support. (Videos)

CIRCL - Connections for Information and Resources on Community Living
A division of NorthStar Services in California providing a central point of contact and thoughtful resources to help individuals and families understand and select supported living providers. Committed to creating opportunities for building and sharing individual, organizational and community strengths in supported living through mentoring to overcome barriers, fostering cooperation with others working toward same outcomes, and provide learning opportunities.
The Full Guide to Flying with a Disability The Medicaid Home and Community-Based Services Settings Rules: What You Should Know
Home and Community-Based Services Regulations Q&A: Settings Presumed to be Institution & the Heightened Scrutiny Process
The Home and Community-Based Settings Rules: How to Advocate for Truly Integrated Community Settings Elements of Design: Frameworks for Facilitating Person Centered Planning (book)Realizations Training and Resources
Employment

TASH Position Statement on Subminimum Wage Employment
TASH Resolution on Integrated Employment
TASH Testimony on Integrated Employment to the Advisory Committee on Increasing Integrated Employment for Individuals with Disabilities - Jan 2015
TASH Testimony on Integrated Employment to the Advisory Committee on Increasing Integrated Employment for Individuals with Disabilities - June 2015
Research and Practice for Persons with Severe Disabilities: Volume 35 Issue 1-2 | Special Issue on Employment (member-only)
TASH Connections: Volume 40 Issue 1 | Pathways to Meaningful Employment for Youth and Young Adults with Significant Disabilities (member-only)
TASH Connections: Volume 39 Issue 3 | Changing the Equation From Employment to Financial Stability (member-only)
TASH Connections: Volume 38 Issue 2 | New Options: Microenterprises and Customized Employment (member-only)

Diversity & Cultural Competency
Related Articles
Human Rights

Parent ABC's: Preventing Restraint and Seclusion in the Classroom
This document, developed by TASH's Human Rights Committee, helps parents plan ahead in order to keep their children safe from the use of dangerous restraint and seclusion in the classroom. It also includes information on where to find a "no restraint letter." (2 pages) Source: TASH
TASH's 2015 Federal Public Policy Agenda
Restraint and Seclusion: Hear Our Stories (film)
Restraint and Seclusion: Hear Our Storiesis a film by Dan Habib, filmmaker at the Institute on Disability at the University of New Hampshire. In the film, several students describe the restraint and seclusion they experienced while in public schools, and the devastating physical and emotional injuries they suffered as a result.

Guardianship and the Potential of Supported Decision Making with Individuals with Disabilities (member-only)
The Continued Debate About Facilitated Communication
The National Center for Supported Decision Making
SPECTRUM Institute's White Paper to the United States Department of Justice
British Columbia Model Supported Decision Making Process Center

Millar, D. S. (2014). Extending transition to address guardianship alternatives: An issue concerning students who have intellectual disability. Education & Training In Autism & Developmental Disabilities, 49(3), 449-463. In this article, the Guardianship Alternative Model (GAM) is introduced with the aim of extending transition planning to address guardianship alternatives specific to students who may be at risk of losing all or some civil and legal rights when their competence and capacity to make decisions and ability to live autonomously are questioned through the guardianship process.

Advocacy

They Work for Us: A Self-Advocate's Guide to Getting Through to Your Elected Officials
This guide describes how self-advocates can get in touch with their elected officials. It also explains how to vote for who you want to represent you in the government.

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Welcome to TASH's resource library. All resources are placed under one of the six categories below. For ease of navigation, click on a category below to be directed to a set of resources.

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There is No Average Student EdSurge podcast

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There is No Average Student EdSurge podcast

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#assessment

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There Is No Average Student. So How Should Educators Measure Learning? by EdSurge Podcast

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What if the way we think about testing and how we measure students is broken? That’s the argument made by our guest today, Todd Rose, author of the bestselling "The End of Average," who has researched the history of grades and standardized tests, and argues for a new way to think about them.

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#communication #autism #expert

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Students With Limited Verbal Capabilities Can Thrive in Inclusive Classrooms

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Students With Limited Verbal Capabilities Can Thrive in Inclusive Classrooms

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#communication

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With the right support, students who cannot rely on natural speech to communicate can do well in integrated classrooms.

Thad Alton / The Capitol-Journal / AP Photo

My first exposure to a student who used augmentative and alternative communication (AAC) was when I taught in a self-contained disability-specific special education classroom. The student, Ringo, had a device like a small laptop that he used to type words and sentences, which were spoken aloud by the device. When Ringo received the device, I didn't get much training other than a few consultations with the speech and language pathologist and a pat on the back for good luck.

After 13 years in the classroom, I realize now what I wish I knew then: Students who cannot rely on speech to be understood don't have to be educated in segregated classrooms. And for educators who have students who require communication supports, training or preparation doesn't have to be complex.

Here are four ways educators can prepare for students who need AAC.

1. Get Familiar With AAC

According to the nonprofit Communication First, AAC is any method of communication used by people with speech or communication disabilities to supplement or take the place of verbal speech. This can include no-tech aids (like pointing, gesturing, or signing), low-tech options (such as a paper board with words, letters, and symbols on it), or high-tech solutions (such as a computer with text-to-speech software).

Some students will use AAC all the time, others only in certain situations. And while some people think that the use of AAC may limit students, using a communication system only empowers people who would not otherwise express themselves reliably.

2. Watch AAC in Action

There are examples in TV and movies of people using AAC that the disability community has universally panned, but fortunately there are also some authentic portrayals. One of the best ways to learn more about people with disabilities is to hear directly from them or interact with media heavily influenced by their voice. Here are a few movies and short films to get you started.

Listen (2021): A short film made by and with nonspeaking autistic people.

The Reason I Jump (2021): A feature-length film based on the biography of Naoki Higashida, who is autistic and nonspeaking.

Loop (2020): A short film by Pixar and Disney highlights Renee, a nonspeaking autistic girl who makes friends with Marcus, a speaking boy, when the two go canoeing together at camp.

Thasya (2012): This powerful short film is a profile of Thasya Lumingkewas, an 8-year-old autistic girl.

Carr Brackett (2008): In this short film, Carr, a young man with Down syndrome, uses his AAC to support his communication needs in a general education classroom.

3. Use the Communication Bill of Rights as a Guide

First published in 2016, the Communication Bill of Rights from the National Joint Committee for the Communication Needs of Persons with Severe Disabilities states that "all people with a disability of any extent or severity have a basic right to affect, through communication, the conditions of their existence." The list of rights, which consists of 15 points for educators to consider, focuses on the dignity and respect of the person with communication support needs.
Reproduced with permission from Tobii Dynavox, LLC ©2020 Tobii Dynavox. All rights reserved.
The first point, "to interact socially, maintain social closeness, and build relationships," is an important one for teachers to implement. Teachers can be intentional about including AAC users in groups where there are students accepting of differences to help facilitate friendships.

If you include planned interactions in lessons where the AAC user can "make comments and share opinions," you can align with the bill of rights' goals. For example, during a class review of a reading passage, give the AAC user time to craft their answer to a question and call on them at a predetermined time. When you give them time to process, they can be prepared with their answer. Wait time benefits all students, so this is a good idea in any classroom.

Another critical thing to consider is a student's right to "refuse or reject undesired objects, actions, events, or choices." Like students who use natural speech, if an AAC user refuses to participate in a class activity, there's typically a reason. Educators can make an effort to ask the student directly about how they can be more comfortable participating in the activity.

Students should always have access to their communication systems.

Students are more likely to communicate and participate when activities are motivating or connect with their passions and interests.

Frequent opportunities to practice using their AAC helps children learn to communicate in various contexts and with various people.

People who use AAC may require more wait time to prepare a response, so make sure to be patient.

When teachers honor students' communication, it teaches them and the other students that we respect them and their voice.

Talk directly to the AAC user, not to their support person (if they have one). And if students work in groups, guide everyone in the group to talk directly to the person using AAC.

4. Practice Strategies for Promoting Communication for All Students

Students who cannot rely primarily on speech to communicate are often the first to be placed in segregated special education classrooms. But what I learned from Ringo is that supporting communication can happen in the general education setting-it just takes a willingness to listen.

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Students With Limited Verbal Capabilities Can Thrive in Inclusive Classrooms

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With the right support, students who cannot rely on natural speech to communicate can do well in integrated classrooms.

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Nobody's Normal: Challenging the Stigma of Mental Illness | Roy Grinker

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Nobody's Normal: Challenging the Stigma of Mental Illness | Roy Grinker

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#stigma #models #autism

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Nobody's Normal: Challenging the Stigma of Mental Illness | Roy Grinker | TEDxFoggyBottom

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#differentiation

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Differentiating instruction isn’t easy, but teachers and professional learning facilitators can work together to overcome the obstacles.

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#models #presumecompetence #inclusion #communication

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Morning Meeting for Students with Autism

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Morning Meeting for Students with Autism

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#autism #community #warmup

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Planning Morning Meetings for Students with Autism Spectrum Disorder (ASD) | Responsive Classroom

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When Elizabeth Powell and I co-taught in an inclusion program for students on the autism spectrum, we discovered that Morning Meeting offered an excellent opportunity to address these students' needs and to help them connect to their classmates by using two of their often overlooked strengths: humor and a passionate interest in specific topics.

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Until Every Barrier Falls poem by LeDerick Horne

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Until Every Barrier Falls poem by LeDerick Horne

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#activism #ableism

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Research and Evidence-Based Practices to Promote Membership and Learning in General Education for Students With Extensive Support Needs (Quirk, C)

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Research and Evidence-Based Practices to Promote Membership and Learning in General Education for Students With Extensive Support Needs (Quirk, C)

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#inclusion #research #bestpractice

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Quirk_Membership and Learning in Gen Ed for Ss w Extensive Support Needs

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Call Me Autistic: A Soft Correction for Those Still Using Person-First Language 

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Call Me Autistic: A Soft Correction for Those Still Using Person-First Language 

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#autism #language #models

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I want to tell you about the woman I am named after, my Great Aunt Betty. I never met Betty, but I got to hear about her whenever I asked where my name came from. Betty was apparently a sassy lady who, like me, despised her full name and went by her nickname, Betty. The "big" family secret about Betty was that her full name wasn't Elizabeth. She was, in fact, a Rebecca. She so loathed the name, and it's common nickname Becky, that at a young age she chose to be called Betty, without exception. My mom always remembered this about her sassy aunt and when faced with deciding what to name me, she went with Rebecca. Turns out, I too would loath the name, along with the nickname Becky, and early on decided that Becca was the way to go.

I share the story of Aunt Betty to remind you that we all have things we are called, labels of some kind or another, that we like and don't like. Throughout my lifetime, I have been called many things, and so have you. Some of them suit, and others not so much. Some can be used to show power, while still others used to compliment. I've been called kid, lady, girl, and woman. I've also been called the quiet one, the b*tch, and that crazy girl. I've been the new girl and the old lady. I've been called friend, girlfriend, and now, wife. And once, I was even called ma'am.

I say once, because being called ma'am is a funny thing for us ladies. It immediately makes us sit up and take notice that 16 was decades ago, even though we don't feel that way 'inside'. Ma'am is something you call a teacher or a judge. Ma'am is reminder to get more sleep. Ma'am is a buzzkill. Most of us react with a simple, 'I'm not a ma'am. My mother/grandmother/mother-in-law is a ma'am.' And, with that, whomever the speaker was understands that the human in front of them would prefer to be addressed as anything but ma'am. Or at least that is what we hope when we make the soft correction.

When I received my official autism diagnosis, that long list of things I was called got even longer. Some of the labels that came with autism were harder to digest than others. Disabled and 'special needs' were the hardest, while aspie and autie were easy and fun. Since I grew up in this label-loving world and memorized it's rules, I innocently figured that whatever I liked being called in relation to autism would be fine with a simple, soft correction. For example, as I am not a fan of using the term 'special needs,' I should be able to say simply, 'I would prefer you say disabled. My needs are human, there's nothing special about them.' And, presumably, with that soft correction, gone are the words 'special' and 'needs' together from every future conversation with that person and in its place sits the word disabled, right? Right, in theory.

In theory, my desire to use the word disabled rather than 'special needs' isn't a big ask. In reality, all it takes to respect the request is a little practice, the willingness to make mistakes, and the commitment to making the changes. We know this is how it works, as right now we are in the midst of a pronoun learning curve. Like ditching 'special needs,' respecting someone's pronoun of choice takes a little practice, the willingness to make mistakes, and the commitment to making the changes.

Having said all of that, I ask, why is it so hard for folks to respect the request to be called autistic? What is so painfully difficult about identity-first language? I can be out and about, in a doctors' office, or even on a panel of experts, and someone will say, 'Becca is a person with autism,' and immediately I picture a yellow street sign with a little stick figure on it that is carrying a bag that says 'autism.' Underneath the figure it reads 'person with autism crossing.' There it is again, that retched person-first language.

With the soft correction rule in play, I say something about how I can't take the autism off my person like a coat and then I explain that my autism and I are pretty darn inseparable. My autism and I are together 24/7, 365 days a year. We eat, shower, work, play, learn, and relax together. I even dream with autism. My autism and I were born together, we are aging together, and we will die together. Autism is an essential part of who I am. So, in the future, just call me autistic.

Now imagine, if after all of that, that same person continued to call me a 'person with autism.' How frustrating, right? Rude. Insulting even. For sure immediately invalidating. Except that I don't have to imagine it, and it's not just that one person, or that one time. And guess what? My fellow autistics don't need to imagine it, either. Autistics, as a community, have been asking, begging, explaining, screaming, and crying to be heard that we prefer identity-first language. We've written articles about it, done interviews, made memes for it, and devoted endless spoons to being called what we prefer to be called. Yet the continued response is to say that we are wrong, and that person-first language is more respectful. Really? More respectful than honoring someone's preference? I think not.

Remember how much Aunt Betty hated even the idea of being called Rebecca? Think about what a misery her life would have been if every time she asked to be called Betty, the response was to tell her it was more respectful for them to call her Rebecca. She would never have grown up to be sassy Aunt Betty with a secret name, but instead would have grown to be one really sad Rebecca, with a ton of anger to boot.

Recall to yourself the last time you heard someone called the wrong pronoun. Or someone inadvertently called you ma'am. Where were you? Who said it? Was it a cringeworthy moment? Maybe you let it slide. Maybe it ruined the day. However it went down, imagine it didn't happen just that once, imagine instead that it happens every day, sometimes multiple times a day, and no matter how much you softly correct the ma'am, on it continues, with some even insisting that the constant ma'ams are more respectful than your preference.

The next time you hear someone say 'person with autism,' I hope you will picture in your head that street sign stick figure carrying their autism bag. I also hope you will patiently bring the soft correction rule into play and gently remind them that autism isn't an accessory.
Becca Lory Hector, CAS, BCCS, is an autism and neurodiversity consultant/author/speaker/advocate based in Colorado. You can find more of her work, sign up for her newsletter, and follow her social media by heading to her website, www.beccalory.com. You can also email her directly at info@beccalory.com. The viewpoints expressed in this article do not reflect the opinion of the Autism Spectrum News Editorial Board or the Publisher, Mental Health News Education, Inc.

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Call Me Autistic: A Soft Correction for Those Still Using Person-First Language

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I want to tell you about the woman I am named after, my Great Aunt Betty. I never met Betty, but I got to hear about her whenever I asked where my name came from. Betty was apparently a sassy lady who, like me, despised her full name and went by her nickname, Betty.

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#models #autism

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So many ideas in the larger autism community often become a debate. As an autistic this black-or-white, choose-your-side sort of thinking is very neurologically friendly to me. I like clear choices. But I also believe we are often unwittingly duped into believing we need to choose a side only because the idea is presented as a dichotomous choice.

"Is autism a disability or a difference?" is one of these questions posed as a dichotomous choice in the autism community. The way the question is posed gives the impression that there is one correct answer.
When Autism is a "Difference"
Many autistic adults would like if autism were recognized as a difference rather than a disability. Many in this group are the walking, talking autistics. We can go out in public by ourselves. Some of us are parents. We are your friends, neighbors and co-workers. We might seem to be a bit odd, but we can fit in enough to at least be allowed a place in the world at large.

Even so, being out and about in the community poses significant challenges. The sensory overload and neurological processing differences dictated by our brain along with ever present challenges with communication and conventional social understanding are such significant differences, even though we can accommodate for them, we are usually exhausted from doing so by the end of the day.

It seems to me that when we are able to be out and about in our communities unassisted by a hired person we are often expected to look and act like typical people regardless of the challenges imposed by the neurological difference of our autism. Because we appear to be like others, our difficulties and needs are thought to be our own personal problems. Even though we have an Autism Spectrum Disorder diagnosis that by definition means we have significant difficulties in many areas of life, others often look at us and ascribe negative intentionality and character flaws to us.
When Autism is a "Disability"
For some of us, the way our autism plays out in our body means we are faced with numerous obstacles to overcome every day of our lives. We may need communication devices, occupational therapy equipment and to employ personal care workers. For those of us whose autism presents challenges with these kinds of needs - we understand the disability aspect of our autism.

We often need a hired person to accompany us when we go out into the community or to support us so that we can communicate. In fact, we may require 24/7 support staff. And for some, our autism plays out in our body in such a way that people can see it as we approach! For us, people can see we need help. Rarely do others look at us and attribute our difficulties to laziness, lack of motivation, self-centeredness or any other negative character trait.

But because our autism is so visibly noticed along with the significant support we often need, people make other sorts of assumptions about us. Our needs are so obvious that people do not always consider that we also have strengths and abilities along with likes and dislikes. Often we are placed in menial jobs as adults (if we are even deemed capable of working) and our support staff is switched around as if people are interchangeable and relationships do not matter to us. We are not often seen as people who have preferences, desires, abilities, skills and talents as the time and energy of others are focused on the meeting deficits and needs imposed by our disability.
Negative Outcome of Choosing Disability OR Difference
As an autistic person when I am asked to choose one - either "disability" or "difference" - I feel like I am being asked, in essence, which part of me I would like to ignore. When I choose "disability" it means my talents, strengths, abilities and preferences are ignored. When I choose "difference" my very real difficulties and needs are not only ignored, but I am often blamed for what others consider my stubbornness in hanging on to negative "character flaws."
Might We Incorporate Both Disability AND Difference?
What if we all chose both disability and difference? Would we then be totally ignored or totally supported? There it is again - another dichotomous choice posed as if it were a real choice!

In the meantime, please know when you ponder whether autism is a disability or difference this is a false choice sort of deal. It serves nobody well and has poor outcomes. And yet we somehow feel that we need to choose between disability or difference. Why is that?

Available in sets of 5 greeting cardsand acrylic prints in three sizesin the Art Store at

www.judyendow.com

BOOKS BY JUDY ENDOW

Endow, J. (2019).  Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology.  Lancaster, PA: Judy Endow.

Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2006).  Making Lemonade: Hints for Autism's Helpers. Cambridge, WI: CBR Press.

Endow, J. (2013).  Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.

Endow, J. (2009).  Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009).  Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With Autism Spectrum Disorders. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2010).  Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go. Shawnee Mission, KS: AAPC Publishing.

Myles, B. S., Endow, J., & Mayfield, M. (2013).  The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment. Shawnee Mission, KS: AAPC Publishing.

French Translation
L'autisme est-il un handicap ou une différence?
Translation/traduction : Marie Lauzon, C. Trans./trad. a. (Canada) www.marielauzon.com
Originally written for and published by Ollibean on June 20, 2014

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So many ideas in the larger autism community often become a debate. As an autistic this black-or-white, choose-your-side sort of thinking is very neurologically friendly to me. I like clear choices. But I also believe we are often unwittingly duped into believing we need to choose a side only because the idea is presented as a dichotomous choice.

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#instruction #adaptations

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Common Classroom Accommodations and Modifications | Understood

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Refer to this checklist of common modifications and accommodations to get to know options for struggling students.

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Critical analysis of disability representation 

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Critical analysis of disability representation 

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#models #representation

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#CriticalAxis: a community driven project from The Disabled List

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#CriticalAxis: a community driven project from The Disabled List

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Critical Axis collects and analyzes disability representation in the media.

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#models

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In my last post Basic Disability Concepts, I mentioned that we all need a perspective check when we design websites and start thinking about people with disabilities. Turns out that there are many different theoretical models that have been proposed on this very topic of how we perceive disabilities! I've encountered a couple of these before, thanks to Sarah Horton's and Whitney Quesenbery's book A Web for Everyone (Amazon).

The models I cover in this post:

There are more than 6 models that have been theorized, but I only offer them a mention, and provide resources at the end to get you started on your own research.

Medical

The medical model (perspective) views disability as a medically-diagnosed biological problem due to genetic disorders, disease, trauma, or other health conditions. Law leans this definition to critically evaluate whether a person is impaired "enough" to receive benefits or accommodation. The person has a problem that needs to be cured or fixed.

Strengths:

emphasizes the biological

offers criteria for medical treatment and legal evaluation

belief that a compassionate society will invest in health care and services to support disabilities

Weaknesses:

overlooks impact of design decisions (it's the person's problem, not the environment)

stigmatizes people as different or second-class citizens

can create narrow and exclusive definitions

dehumanizing if a person has to prove their disability

Social

The social model (perspective) views disability as a condition created by bad design. Society's ecosystem institutes barriers for people. It's in response to the medical model, and rallies for change in the culture and ideology of society to be more inclusive.

Strengths:

emphasizes the human right to participate in society

removes stigma

inspires creative design

Weaknesses:

de-emphasizes biological reality of a disability

strips disability from a person's identity

Economic

The economic model (perspective) views disability as the inability of a person to work and contribute to society. It's related to the Charity/Tragedy model.

Strength:

emphasizes the need for economic support or accommodation

Weaknesses:

disabled become stigmatized as needy

narrow definition may deny help to a person who needs it but doesn't meet qualifications

Functional Solutions

The functional solutions model (perspective) views disability as problem to be solved. Specifically, it seeks to overcome physical limitations with technology. It cares less about the social or political nuances, but rather strives for innovation as its motivation. Accessibility professionals often live in this space.

Strengths:

meets people where they are

service-based

focused on solutions

real-world approach

Weaknesses:

myopic (doesn't address broader issues)

misses opportunities of social change

Social Identity / Cultural Affiliation

The social identity or cultural affiliation model (perspective) views disability as a community. People who identify with a particular group or culture (e.g. deaf culture) become more involved with that culture and embrace their disability as part of their identity.

Strengths:

disability is accepted and even a point of pride

groups find political strength to advocate for change

Weaknesses:

sense of exclusion when a person doesn't fit the mold or expectation of the group

alienation from society when involved with a specific group

Charity/Tragedy

The charity or tragedy model (perspective) views disability as tragic, unfortunate, or inspirational. When this perspective becomes an attitude, it can become offensive to people with disabilities.

Strength:

inspires fundraisers, projects, assistance, and intervention for people with disabilities

Weaknesses:

creates an unhealthy social relationship or hierarchy

condescending or dehumanizing

perpetuates the lie that people with disabilities are objects of inspiration (inspirational porn)

short-term

Other Models

In addition to the models I've dissected in this post, there were other honorable mentions in the CPACC coursework I'm working through; all of which have their own merits and pitfalls.

Affirmation: similar to the social identity model, it views disability as an chance to affirm one's identity and celebrate that part of self;

Sociopolitical: views disability needs as a human right;

Religious/moral: views disability as an act of God to punish or teach;

Expert/professional: a variation of the medical model, it views disability as a condition to be treated or managed by experts;

Rehabilitation: a variation of the medical model, it views disability as a condition to be treated be therapy and rehabilitation;

Are you familiar with any other models that haven't been mentioned here?

Where Do You Stand?

I don't know about you, but all these models have given me a lot to think about, challenging my own perspective and world view. The variety of definitions have offered some confirmation on thoughts I've had. In contrast, they've pointed out some of my own fault in thinking about myself and others.

In order to do the work of advocating for people with disabilities and developing websites with accessibility in mind, we need to understand our own point of view. Believe it or not, our work is colored by our current perspective. Before we can have conversations with people with disabilities, we need to evaluate where we stand and what language we use.

What does "disability" mean to you?

Resources I Found Helpful

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In my last post Basic Disability Concepts, I mentioned that we all need a perspective check when we design websites and start thinking about people with disabilities. Turns out that there are many different theoretical models that have been proposed on this very topic of how we perceive disabilities!

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#ableism #race #racism #intersectionality

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2021 UPDATED WORKING DEFINITION OF ABLEISM by @talilalewis

This definition simplifies some of the language from previous versions & explicitly includes desirability, misogyny, imperialism, language...

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#inclusion #udl #autism #literacy #differentiation

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Looking for a short on an inclusion-related topic? You have come to the right place! On this page, you will find articles on four different topics: autism, differentiation, inclusion, and literacy.

Feel free to use these readings for classes, professional development, or newsletters. You do not need to get permission to do so-just cite the article using both my name and the name of this site.

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Looking for a short on an inclusion-related topic? You have come to the right place! On this page, you will find articles on four different topics: autism, differentiation, inclusion, and literacy. Feel free to use these readings for classes, professional development, or newsletters.

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Webinar on disability and representation in the media with film maker, Dan Habib, and Imani Barbarin, Andrew Pulrang, and Emily Ladau

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Webinar on disability and representation in the media with film maker, Dan Habib, and Imani Barbarin, Andrew Pulrang, and Emily Ladau

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#expert #representation #media

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In honor of the 30th Anniversary of the Americans with Disabilities Act (ADA), the Disability Rights Center - NH and the Institute on Disability at the University of New Hampshire co-hosted "Disability and the Media: A Free ADA Anniversary Discussion". NH film maker, Dan Habib moderated as panelists Imani Barbarin, Andrew Pulrang, and Emily Ladau discussed disability representation in the media today, and practical strategies for the audience to employ and amplify the voices of people with disabilities in both traditional and non-traditional media outlets.

If you missed this event or just want to rewatch it, please see the links below:
View a recording of "Disability and the Media: A Free ADA Anniversary Discussion" Download the event slide deck Download the event chat stream
Some additional resources referred to during the event
Road Map for Inclusion: Changing the Face of Disability in Media Disability Language Style Guide Black Disabled Creatives Disabled Divas Disability Visibility Project Disabled Writers Rooted in Rights The Disabled List
Some panelist recommendations for who to follow on social media

Original Event Details

Disability and the Media: A Free ADA Anniversary Discussion

How can we better engage with the media to elevate the stories and share the experiences of people with disabilities?

Mainstream news coverage largely leaves disability out of its programming despite disability being a cross-over issue for almost every topic. When a person with a disability is covered, they are often portrayed as someone to inspire or pity rather than respect. To counter this lack of representation, people with disabilities and members of the disability community are turning to sources outside of traditional media programming to elevate coverage of disability issues.

In honor of the 30th anniversary of the Americans with Disabilities Act (ADA), the Disability Rights Center - NH and the Institute on Disability at the University of New Hampshire are co-hosting a free, public webinar: "Disability and the Media". Panelists will discuss disability representation in the media today, and practical strategies for the audience to employ and amplify the voices of people with disabilities in both traditional and non-traditional media outlets.

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In honor of the 30th Anniversary of the Americans with Disabilities Act (ADA), the Disability Rights Center - NH and the Institute on Disability at the University of New Hampshire co-hosted "Disability and the Media: A Free ADA Anniversary Discussion". NH film maker, Dan Habib moderated as panelists Imani Barbarin, Andrew Pulrang, and Emily Ladau [...]

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Transforming Our Public Schools: A Guide to Culturally Responsive-Sustaining Education

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Transforming Our Public Schools: A Guide to Culturally Responsive-Sustaining Education

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#CRE #CRSE #race

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#expert #race #transition #ADA #intersectionality

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Last month marked the 30th anniversary of the American with Disabilities Act (ADA), which of course meant more attention given to disability justice and the voices of disabled people.

But now that the anniversary has passed and the news cycle has moved on, where does that leave disability justice and visibility? And more specifically, what does that mean for Black disabled people like myself?

The ADA was a start, but not an end; just as inclusion is a start, not an end.

Simply put, anything that entails ticking off a box or a criteria is not enough. Undoubtedly, winning civil rights protections and ensuring some infrastructural access for disabled people was an important victory. But as a Black disabled woman, I know the shortcomings of the legal system. And like most disabled people, I'm reminded every day of how far we have to go.

As we reflect on the past 30 years and honor those who fought for the ADA, we need to go further and completely overhaul the way society perceives and treats disabled people, starting with Black disabled people.

Black disabled people experience higher levels of police violence and the school-to-prison praxis in ways that are often overlooked. We also experience higher rates of unemployment than our white disabled counterparts and non-disabled Black counterparts.

And yet our Blackness is often seen as a distraction in the disability justice movement. And our concerns are rarely prioritized by other movements because people fail to see how our lives are impacted by white supremacy and ableist culture. But we can't have our race or disability take a backseat because fragmenting our identity means we are not seen. And without truly seeing one another, liberation can't happen.

But I know that a scarcity mindset will have us thinking that centering Black disabled people is at the expense of other rights to be found and won. This could not be any further from the truth. If we care to listen and learn, the experience of Black disabled people has a lot to teach us about real inclusion both within and outside disability justice as well as in other progressive movements such as the Movement for Black Lives.

The logic of centering the people closest to the problem as the most effective path towards lasting change is one reason why we must listen and follow the leadership of Black disabled people. But there is also another logic we must heed: the people who face intersectional oppression can raise the bar on what it means for all of us to be free and how we must go about creating not just spaces, but most importantly, visions that are truly inclusive of everyone in the full glory of who we are and what it will take for us to triumph over our varied struggles.

Progressive movements will only win lasting change and create a new world free from the trauma and harm of white supremacy, ableism, and other sentiments and structures of exclusion and hierarchy by putting long overdue focus on Black disabled people.

We can start by ceasing to render identities and issues that are not shared by the majority as afterthoughts, or worse, ignored all together. I would argue that our inclination to create hierarchies of value and worth is a learned behavior of white supremacy, and has us believing that we need to get over and win for ourselves because there will never be enough for all of us.

We've ingested this flawed mindset from living in a broken world. If we want it, there is more than enough for all of us. As a member of the Movement for Black Lives, it has been heartening to see the ways in which leaders are working to be accountable for the past harm of not centering the experience and leadership of Black disabled people.

This summer I've been working with a group of freedom fighters on the upcoming 2020 Black National Convention, being organized by the Movement for Black Lives and happening on August 28th. I've been able to witness firsthand how the Movement for Black Lives is going from treating us Black disabled people as afterthoughts to understanding and working towards building power with disabled people so all Black people can soar to our collective freedom.

Real inclusion is not about a check mark that says, "Yes, we have included disabled people or have made access and participation possible for disabled people." Real inclusion is about bringing up disability and not waiting for a disabled person to do so. Real inclusion, when it's done right, isn't easy. Committing to real inclusion requires a reckoning with the erasure of disabled people across all social movements past and present.

Real inclusion is seeing each other fully like my grandmother did for me since the day I was born. She saw me not for who she was told I would be, but for who I was and who I became. She saw my disability not as a diagnosis, but as part of my identity and the culture and community that I cultivated as I got older.

It's time to listen to Black disabled people. Our fight for disability justice cannot be divorced from other calls for justice. Now is the time for progressive movements to truly embrace disability justice. It's time to see our demand for change as yet another beautiful wingspan towards our collective justice and freedom.
Vilissa K. Thompson is a Licensed Master Social Worker (LMSW) and disability rights consultant, writer, and activist from Winnsboro, SC. Vilissa is the Founder and CEO of Ramp Your Voice!, an organization focused on promoting self-advocacy and strengthening empowerment among disabled people.

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It's Time To Listen To Black Disabled People

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Last month marked the 30th anniversary of the American with Disabilities Act (ADA), which of course meant more attention given to disability justice and the voices of disabled people. But now that the anniversary has passed and the news cycle has moved on, where does that leave disability justice and visibility?

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Paul Kotler on his experience with the Rapid Prompting Method

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Paul Kotler on his experience with the Rapid Prompting Method

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#communication #expert

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Recently Soma had a Rapid Prompting treatment and training session in Pennsylvania and it made me think of my experiences with the Rapid Prompting Method.

RPM opened up the world to my voice. I learned this way of communication when I was twelve. For twelve years, I had tried to use my voice to communicate, but my motor planning was so messed up that I could only get out a few rote sentences and phrases that I had practiced what seemed to be a million times. Can you imagine how much fun it would be to say "may I go to the bathroom" a hundred times in therapy in ten minutes? However, this is the only way I was able to learn to speak. By practicing sounds, words and phrases a million times until they became automatic for me. Nothing was simple. Everything took so much effort, every sound had to be thought out and then consciously made by telling my tongue or lips where they were supposed to be. It was very discouraging. I had so much I wanted to tell people about my experiences and my thoughts on everything from what we were having for dinner to the latest Harley Davidson. Unfortunately, my mouth, tongue and lips didn't seem to agree with me. They just did not want to move.

That's when I met Soma. She was wonderful. I sat down with her and of course resisted at first. I was at the point where I was angry about not being able to communicate. I was anxious because I thought people would have no interest in hearing about what I had to say. Soma sat down with me and very soon after we started I remember communicating about the solar system and showing people that I did have knowledge of things and was not stupid. I had a mind full of knowledge and opinions to express. Soma had me answer questions using a letter board. It was wonderful. My fingers could move so much easier than my lips. I even realized that I knew how to spell quite a few things. It came almost naturally to me and expanded my world so much. I was now able to communicate what I really wanted to say and not just seem like some sort of blank slate that went around saying "may I go to the bathroom" every five minutes out of a desire for human interaction.

It has been a long time since I used the Rapid Prompting Method. Now I am pretty fluent at typing, but it all started with RPM. I would have never learned to communicate without it and am so lucky that my family had faith in me and knew that there was something in my head that I needed to say and searched until they found what worked for me.

I have heard many people laugh at RPM and say that it is nothing. I have heard people say that Soma is cueing kids and telling them what to say. None of this is true. I never was told what to say. My finger was never forcibly put upon a letter. It was all me and no one can take that away from me because I know it to be true.

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My Experience with the Rapid Prompting Method

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Recently Soma had a Rapid Prompting treatment and training session in Pennsylvania and it made me think of my experiences with the Rapid Prompting Method.RPM opened up the world to my voice. I learned this way of communication when I was twelve. For twelve years, I had tried to use my voice to communicate, but...

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Article about the the idea of "being disabled"

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Article about the the idea of "being disabled"

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#language #expert #models

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Recently, I came across a post that caught my eye while I was blissfully browsing Twitter. In the post, a woman with a prosthetic device in the place of her right arm performs "The Devil Went Down to Georgia" on her violin. As a double leg amputee myself, who once upon a time played violin, I was overjoyed. So there I was, happily watching her concert, absorbed in the music...

Until I saw the post's caption.

"Disability is just a word."

Complete with strong arm and violin emojis.

The caption for the tweet that had me... step back and think a bit.

I sat there for a while, while a bunch of thoughts flew through my head.
"Really, this again?"
I took a deep breath. I closed my laptop.

Then, I took another ten deep breaths. And I opened my laptop back up again.

If it seems like I'm tired of these kinds of comments, it's because I am. If it seems like I'm exhausted with the fact that "disability" and "disabled" are treated like dirty words... it's because I am.

Yes, at a first glance, "disabled" may seem like a bad word. The dictionary definition of "a condition limiting movement, senses, and activities", doesn't seem like something someone would want to identify with, right? But, actually, "disabled" and "disability" are not dirty words; they are used by many disabled people to describe a daily reality. These terms are utilized by disabled people to indicate a shared identity, history and community. "Disabled" is even used by some to reflect the idea of the social model of disability- that disabled people's impairments are not only caused by medical conditions or issues, but by the ableism and inaccessibility that continues to disenfranchise and disadvantage disabled people.

But, actually, "disabled" and "disability" are not dirty words; they are used by many disabled people to describe a daily reality. They are used by disabled people to indicate a shared identity, history, and community.

Disability is not the absence of humanity. Many well-intentioned forms of disability language, like "person-first language" ultimately hurt disabled people and further stigmatize disability. This type of language states that disabled people should always be referred to as "people with disabilities"- with "people" or "person" invariably prefacing the word "disability".

Once, I was a staunch advocate of this usage. Frustrated by ableism and inaccessibility as I started college, person-first language was presented as a way to address why I was treated like I was: abled people could not see me, the person, but just saw the disability. However, I soon realized that this was not a sufficient explanation. I had many people, including friends, who consistently told me they "didn't see me as disabled". While this seemed like a positive thing to me at first, I realized that it did not change how these people treated me, compared to people who did not use this language- I was still infantilized by them, presumed incompetent and childlike just because of my disability. People still forgot about my accessibility needs, and did not think of what I might need to help me navigate going to restaurants, parties, and class. The more I thought about it, the more I rejected person-first language. Why does "the person" have to go first? Does a disability not signify humanity? Why are these terms incompatible with each other? I understood that my disability was a part of me, and something that couldn't be ignored. I could pretend to not be disabled, or I could embrace it and remind others of my needed accommodations. I came to the conclusion that people needed to see the disability that made me, me. Otherwise, they would justify overlooking it instead of seeing it as an inherent part of who I was.

Of course, disabled people should not be seen only as their disability, and this is largely what person-first language usage is trying to prevent. I would argue though, that this concept should be obvious. It is a very simple, basic idea, that a disabled person is a person. if you have to struggle so hard to see that a disabled person is a person, deserving of equal rights and access, as human as you are, what does that say about you?

Euphemisms for disability, like "differently-abled" are even worse, in my opinion. If we can't discuss disability and disabledness, and instead resort to euphemisms, we cannot meaningfully counter the ableism and inaccessibility in our society. There cannot be a framework for why disability rights matter or why they should be a priority if we do not recognize the importance of identifying as disabled- as a group of people who have been, and continue to be, systematically discriminated against.

There cannot be a framework for why disability rights matter or why they should be a priority if we do not recognize the importance of identifying as disabled- as a group of people who have been, and continue to be, systematically discriminated against.

The word disabled is also used by disabled people because disability can be disabling. not only because of inaccessibility or ableism, but also because of our own bodies. There are things that I will never be able to do that everyone else can. There are days where I have terrible pain, where my disability prevents me from doing things. I don't want to shirk this reality. Instead, I want to acknowledge it. Ignoring this as part of the disabled experience does not help the disabled community. So no, inspirational meme- "disability" isn't just a word. it is something that can actually impact people negatively. People must recognize that and treat disabled people with this in mind. Phrases like "disability is just a word" bury the actual struggles that disabled people go through, whether that be because of our own bodies, or because of the inaccessibility and ableism so ingrained in our society.

Yes, this isn't sexy. it surely doesn't invoke the image of the graceful and powerful "superhuman" Paralympians that are so often touted as what disabled people should be working towards- the able-bodied standard. That we should "overcome" our disabilities and disabledness. However, for many disabled people, there is nothing to overcome. Instead, disability is not something to fight, but accept the reality of. It is a mix of ability, and inability. Bad days. And good ones. Wonderful moments of solidarity, and crushing feelings of loneliness. Disability only means "inherent inability" if we give it the power to do so. In fact, it describes and means so much more. When people react negatively to the word disabled, I think of it as an indicator of how they think of disability in general. Do they recognize that disability is an identity, or rather think of it as a thing to overcome and never acknowledge, because it is so awful? Disability is not so black and white.

Disability only means "inherent inability" if we give it the power to do so.

I have been corrected many times by abled people on the language I use to describe disability. If you are not disabled, it is not your place to critique the language I use to identify myself. It does not matter if you are a Special Education major, or even a professor. It does not matter if your grandmother, mother, father, or dog is disabled. It does not matter if you are a caregiver for a disabled family member. Disabled people, and disabled people alone, should choose how they want to be referred to. I still remember the shame and pain I felt when my Disability and the Media professor corrected my essays to include "person-first" language my very first semester in college. I felt invisible. I felt like I had been dismissed, devalued. Something that was supposed to encourage me was instead disheartening.

If you are non-disabled, listen to and learn from what disabled people have to say. Of course, every person will have a different relationship to disability language, and every disabled person can identify how they want to. But many disabled people are saying, what I believe, at least, to be true: disabled is not a dirty word. It is the exact opposite. It is empowering. It is a means to connect with myself and my community. It reminds me of the leaders of the disability rights movement in the United States, who through sit-ins and protests (including crawling up the steps of the Capitol, and staging the longest sit-in of a government building) aided the passage of Section 504 and the Americans with Disabilities Act. Identifying as disabled especially makes me proud of all the wonderful and amazing disability activists still out there to this day, campaigning for Medicaid, de-institutionalization, and equal rights in the workplace and representation in Hollywood. Using the word "disabled" reminds me of the discrimination I face and why I must continue to advocate for my rights. It grounds me in the reality that I can have bad days due to my disability, but I can still be confident in my identity and myself. I am proud to be disabled. Therefore, I'm letting the world know: I'm disabled.

And not some other word.

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Recently, I came across a post that caught my eye while I was blissfully browsing Twitter. In the post, a woman with a prosthetic device in the place of her right arm performs "The Devil Went Down to Georgia" on her violin. As a double leg amputee myself, who once upon a time played violin, I was overjoyed.

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Video animation about the social model of disability

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Video animation about the social model of disability

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#models

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 THE CULTURALLY RESPONSIVE-SUSTAINING STEAM CURRICULUM SCORECARD by EJ-ROC at NYU Metro Center

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 THE CULTURALLY RESPONSIVE-SUSTAINING STEAM CURRICULUM SCORECARD by EJ-ROC at NYU Metro Center

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#CRE #CRSE #race #STEM #STEAM

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Jonet Artis on equity, access, early intervention, and autism

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Jonet Artis on equity, access, early intervention, and autism

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#autism #equity #earlychildhood

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Research on the factors that impact access to and the use of allied health services can help us to determine if additional efforts need to be in place to make sure that everyone is afforded the same opportunity."

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An Interview with New Faculty Member Jonet Artis

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Research on the factors that impact access to and the use of allied health services can help us to determine if additional efforts need to be in place to make sure that everyone is afforded the same opportunity."

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#autism #communication

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Non-verbal girl with Autism speaks through her computer 20/20 ABC News

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Book by autistic people of color on autism and race

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Book by autistic people of color on autism and race

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#race #autism #expert #intersectionality

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All the weight of our dreams - On living racialized autism

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#inclusion #research

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- One of my most popular posts included 7 evidence-based research studies that prove the benefits of inclusion for students with and without disabilities. Still, I had a few readers comment that the research studies I cited were too old to be impactful. I was completely irked by these comments, because no one would ever say research from the 1990s showing the benefits of desegregation on black and white students is not still impactful and true today. Still, I have come across so many new studies that show the benefits of inclusion, that I thought I would update my original post. In fact, as you'll read below there are absolutely NO research studies that show an academic advantage for students with intellectual disabilities in a segregated setting. I hope you'll share these newer research studies with your child's IEP team or other potential non-believers. -

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"Almost 30 years of research and experience has demonstrated that the education of children with disabilities can be made more effective by having high expectations for such children and ensuring their access to the general education curriculum in the regular classroom, to the maximum extent possible."

Most parents of students with with an Individualized Education Plan (IEP) have heard a variation of the quote above, especially if you've tried fighting for inclusion. I assumed this statement was just hyperbole. I figured there was some truth in it, but that there was probably just as much research showing self-contained classes were more beneficial than inclusion. At least that's what most school districts and even many parents would have you believe.

Imagine my surprise then, when I read the EXACT quote above in the introduction to the Individuals with Disabilities Education Act (read it for yourself right here). The actual law, supported by both Democrats and Republicans, states that a regular classroom with proper supports is best for ALL students with disabilities. I was a bit taken back, and wanted to know more about this research the law touted.

What I found was even more surprising. Did you know there's not one quantitative research study, since research began on the topic, that shows an academic advantage for students with intellectual disabilities in separate settings? None! Zip! Nada! Here's the research study citation to prove it: Falvey, Mary A. (Spring 2004) Toward realization of the least restrictive educational environments for severely handicapped students. Research and Practice for Persons with Severe Disabilities. 29 (1), 9-10.

Luckily, I've learned a lot more about the research that supports proper inclusion in the Least Restrictive Environment for students with even the most severe disabilities as part of the Council of Parent Attorneys and Advocates Special Education Training. It's a year-long course I completed for my own son's entry into public education, as well as to fulfill my goal to help other families advocate for inclusion for their child.

So, without further ado, below are 7 NEW quantitative research studies that show the benefits of including students with disabilities in a general education classroom:

A 2013, quantitive study of more than 1,300 students between the ages of 6 and 9 years old within 180 school districts found that access matters. The study found a strong relationship between the amount of time spent in general education and achievement in math and reading for students with disabilities.

Citation: Cosier, M., Causton-Theoharis, J., & Theoharis, G. (2013). Does Access Matter? Time in General Education and Achievement for Students With Disabilities. Remedial and Special Education, 34(6), 323-332. https://doi.org/10.1177/0741932513485448

2. A 2010, synthesis of research studies shows the academic effects that peer tutoring has on students with disabilities (regardless of disability type). The literature overwhelmingly reveals that peer tutoring has a positive effect on the academic outcome of students with disabilities in grades 6 through 12.

Citation: Okilwa, Nathern S. A.; Shelby, Liz, (2010). The Effects of Peer Tutoring on Academic Performance of Students with Disabilities in Grades 6 through 12: A Synthesis of the Literature. Remedial and Special Education, v31 n6 p450-463 Nov-Dec 2010

3. A 2012, comparative study followed 34 students with Intellectual Disabilities (ID) fully included in general education with supports with a control group of 34 students with ID in special schools. Included children made slightly more progress in literacy skills than children attending special schools. The researchers concluded that inclusive education is an appropriate educational placement for students with ID who require extensive supports in school.

4. A study looking at the outcome of 11,000 students with all types of disabilities found that more time in a general education classroom correlated to less absences from school, fewer referrals for misbehavior, and more post-secondary education and employment options.

Citation: Wagner, M., Newman, L., Cameto, R., and Levine, P. (2006). The Academic Achievement and Functional Performance of Youth with Disabilities: A Report from the National Longitudinal Transition Study-2 (NLTS2). (NCSER 2006-3000). Menlo Park, CA: SRI International

5. A 2017, study found that 41.7% of student with learning disabilities made progress in math in general education classes compared to 34% in traditional special education settings, without the presence of nondisabled peers.

Citation: Sharp, N. (2017). Inclusion in the early childhood classroom: What should this look like? (Master's thesis, Northwestern College, Orange City, IA). Retrieved from http://nwcommons.nwciowa.edu/education_masters/32/

6. A 2011, study finds that there's nothing "special" about the four walls of a special education classroom. The research suggest that the purported rationale for self-contained special education in the literature-issues of community, distraction-free environments, specialized curriculum/instruction, and behavioral supports-were not present in the six observed self-contained settings. Implications for school leaders are discussed and the rationales for the utilization of self-contained classrooms are strongly questioned.

Citation: Does Self-Contained Special Education Deliver on Its Promises? A Critical Inquiry into Research and Practice. Causton-Theoharis, Julie; Theoharis, George; Orsati, Fernanda; Cosier, MeghanJournal of Special Education Leadership, v24 n2 p61-78 Sep 2011.

7. Many schools and parents make the argument that typical peers may be negatively impacted by the presence of students with disabilities. Especially those students with behavior problems. But a 2013, study found that inclusion does NOT compromise a typical students academic or social outcome. No significant difference was found in the progress of the low-, average-, or high-achieving pupils from classrooms with or without inclusion.

So with all this proof, why are students with intellectual disabilities still only being included in general education 17% of their day on average? Tell me below why you think this is the reality for our loved ones. I'll do a blog post giving my answer as well.

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7 NEW Research Studies to Help You Win the Fight for Inclusion - Inclusion Evolution

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One of my most popular posts included 7 evidence-based research studies that prove the benefits of inclusion for students with and without disabilities. Still, I had a few readers comment that the research studies I cited were too old to be impactful.

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Vice Dean Patten article on strengths-based practice 

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Vice Dean Patten article on strengths-based practice 

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#strengths

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When I talk about my work, it is not about understanding autism from a neurodiverse perspective. That is not for me to do. I am not autistic. I have learned immensely from my partnerships and interactions with autistic individuals. Autistic self-advocates should be leading the way, compensated as experts in educating the professional community about neurodiversity, autism and what interventions are most helpful and what research is needed. Instead, I would like to focus on how professionals can shift to a strength-based practice, embrace neurodiversity and recognize how a neurotypical bias may impact our ability to engage in authentic strength-based practices.

Professionals are able to identify deficits and maladaptive functioning, that is what we are trained to do in fields such as special education, occupational therapy, and speech and language therapy for example. We do identify strengths in our assessments and observations, often by default, but need to emphasize weaknesses in order to provide services. This emphasis has narrowed the scope of both practice and research to the deficiencies demonstrated by autistic individuals, and goals and treatment programs that then are centered around remediating areas of weakness. No one, however builds their lives on remediated weaknesses. We build our lives on things we do well, and our interests. Saleeby (2001), an early proponent of using strength-based models in the field of social work, identified that a problem orientation begins to look like an exercise to meet the needs of the professionals rather than those they serve. The chosen focus of intervention, whether it is through a strength-based lens or a deficit focus will be critical for long-term outcomes including quality of life, well-being and the ability to live a self-determined life. By holding a longer view of success and outcomes, a shift away from a primary focus on deficiencies is in order (Patten Koenig & Shore, 2018). Can professionals replace a deficit lens, with one in which challenges, especially those caused by the environment and social attitudes are addressed, but competence becomes the bias?

It is a radically different practice perspective from the problem-focused approach and there are neurotypical biases that make it difficult for professionals to make this shift. A strength-based practice has its roots in self-determination theory, including a) autonomy, being able to freely choose things in your life and not being controlled, b) competence, doing things you initiate and that make you stretch, and c) relatedness, choosing your relationships with others (Ryan & Deci, 2000). Practice begins to look different if these core psychological needs are held as primary. This can be illustrated by using restricted or focused interests as an example.

Professionals often discourage the use of interests in the classroom or during therapy, or hold them out as rewards. Controlling use of rewards is in direct opposition to the development of autonomy (Ryan & Deci, 2000). Patten Koenig & Williams (2017) surveyed 80 autistic adults as to how they characterized and utilized interests both as children and now as adults, and while 87% of the participants wished that teachers and professionals would have used their interests in the classroom, only 12% reported that their teachers actually did use their interests as strengths to support learning. These adults overwhelmingly reported that their interests were positive, helped calm them and mitigate stress, were not interfering or anxiety producing and should be utilized for learning and mastery, development and autonomy (Patten Koenig & Hough Williams, 2017), two core skills of self-determination. The neurotypical professional bias often sees these interests as part of the problem, versus a solution.

There is a neurotypical bias as to how professionals should address social skills. Approaches to social interventions for autism are framed by neurotypical definitions of being social. Heasman and Gillespie (2018) investigated how autistic individuals build social understanding and found that in a high-interest activity, there is a generous assumption of common ground, which can lead to rapid rapport. Instead of a social skills group to increase competence in discrete social skills, a strength-based practice could have the therapist utilize inclusive interest-based groups that students are autonomously motivated to participate in, have a competent knowledge base in order to make connections, and socially participate in a more meaningful, self-determined way. Teachers could incorporate strengths and interests into subject matter, routines and social relationships by simply respecting the inherent value they have for the individual versus pathologizing these interests. This builds relationships in a way that is meaningful to the student. The framing matters. If I view interests as positive and an avenue for learning and goal attainment, I must find a way to incorporate them into all aspects of professional practice. If I frame these interests as interfering, then I must eliminate them.

Autistic individuals are expressing anger and frustration at therapeutic interventions that diminish interests (Bagatell, 2010) and advocacy groups are making a distinction from interventions that provide supports and services to help individuals achieve personally valued goals versus "normalization" of their behavior (Parsloe, 2015). If practitioners can adopt a strength-based practice, their thinking will shift away from any intervention that attempts to "normalize," unless it is personally valued (Patten Koenig, 2019). These shifts in thinking will require the professional to question him or herself regularly and ask questions such as: Am I focusing on weaknesses in the absence of strengths? Am I offering activities and choices that are related to interests? Am I viewing autistic interests as strengths versus motivators or worse yet suppressing them as maladaptive behaviors? Am I combining a strengths perspective with the challenges that are being addressed? The first place to find the answers to those questions is to examine our evaluations, goals, individual educational plans and interventions. If the answer is a one-line response for "strengths," it is time to see the biased perspective and make the shift to an authentic strength-based practice.
Kristie Patten Koenig, PhD, OT/L, FAOTA, is Associate Professor and Chair at the New York University Steinhardt School of Culture, Education and Human Development Department of Occupational Therapy. If you would like to contact Dr. Patten Koenig, she can be reached via email at kpk3@nyu.edu. References
Bagatell, N. (2010). From cure to community: Transforming notions of autism. Ethos, 38, 33-55.

Heasman, B. & Gillespie, A. (2018). Neurodivergent intersubjectivity: Distinctive features of how autistic people create shared understanding. Autism, 22, 1-12 https://doi.org/10.1177/1362361318785172

Parsloe, S.M.(2015). Discourses of disability, narratives of community: Reclaiming an autistic identity online. Journal of Applied Communication Research, 43, 336-356.

Patten Koenig, K. (2019). A strength-based frame of reference for autistic individuals. In P. Kramer, J. Hinojosa & T. Howe (Eds.) . Frames of reference for pediatric occupational therapy (4th edition).

Patten Koenig, K. & Shore, S. (2018). Self-determination and a shift to a strengths-based model. In R. Watling & S. Spitzer (Eds.), Autism: A Comprehensive Occupational Therapy Approach, 4 th edition, Bethesda, MD: AOTA Press.

Patten Koenig, K. & Hough, L. (2017). Characterization and utilization of preferred interests: A survey of adults on the autism spectrum. Occupational Therapy in Mental Health. doi.org/10.1080/0164212x.2016.1248877

Ryan, R. M. & Deci, E. L. (2000) Self-determination theory and the facilitation of intrinsic motivation, social development and well-being. American Psychologist, 55, 68-78.

Saleebey, D. (1996). The strengths perspective in social work practice: extensions and cautions. Social Work, 41(3), 296-306.

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Authentic Strength-Based Practice: Can Neurotypical Professionals Make a Paradigm Shift?

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When I talk about my work, it is not about understanding autism from a neurodiverse perspective. That is not for me to do. I am not autistic. I have learned immensely from my partnerships and interactions with autistic individuals.

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#inclusion #belonging #research

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October 2010 | Volume 68 | Number 2
Interventions That Work

George Theoharis and Julie Causton-Theoharis

Kenny is a student at River View, a public K-8 school in central New York. Kenny spent his first few school years in a self-contained special education class because, according to an evaluation, he was "too disabled to be in the general education setting." In Kenny's 4th grade year, River View undertook a new schoolwide intervention. As part of that change, Kenny began learning in a general education classroom. Within a year, he no longer qualified for special education because he had made such significant academic progress.

At River View-and a similar school that serves K-6 grades called Summer Heights-more students are now achieving at grade level in math and at a proficient or advanced level in reading than was the case before these schools rolled out a schoolwide intervention. Achievement went up for both nondisabled students and students with mild and significant behavioral, academic, and intellectual disabilities. For example, in terms of literacy, the percent of River View 4th graders with identified disabilities scoring at or above grade level went from only 20 percent to 42 percent in just two years.

What was the intervention that made a difference for Kenny? Did these schools adopt a packaged program? Did they engage in test preparation or narrow their curriculum to raise achievement in math and reading at the expense of broader course offerings? Did the schools develop a new program for students with identified disabilities?

The answer to all these questions is no. The intervention both schools used is inclusive school reform: At River View and Summer Heights, all students-including the approximately 23 percent of the student body at both schools formally identified as disabled-now have full access to the general education curriculum. Special education teachers and general education teachers coplan and coteach lessons. As professors at a research university close to these schools, we helped them rethink school structures and bolster the instructional techniques that made this transformation possible.

What Is Inclusive School Reform?

The theory behind inclusion is that the best way to provide quality education for students with disabilities-and all students-is to increase marginalized students' access to the general education classroom, where the best curriculum and social opportunity are often provided. Inclusive school reform also means providing each student an authentic sense of belonging in an inclusive classroom where difference is expected and valued.

Many schools across the country now approach intervention through the "three-tiered triangle" that's characteristic of Response to Intervention (RTI), a model for identifying and supporting students with learning challenges that many districts have adopted. The base of the triangle (Tier 1) represents good general curriculum and instruction, provided to all students. In the next tier up, students who still struggle receive some prescribed intervention; and in the upper tier, the few learners who don't respond successfully to the first two levels of instruction receive more focused intervention.

Rather than target a few students to receive special help outside the mainstream, however, schools like River View use inclusion as their guiding philosophy. As these schools improve the way they meet all students' needs within the general education setting, they are seeing positive results for kids like Kenny, who typically receive interventions in more restrictive settings. We see places like River View as schools of promise-three promises, in fact: a promise to include everyone, a promise to help staff and students feel that they belong, and a promise that everyone will learn.

But We've Tried Inclusion...

We have heard many administrators, teachers, and staff say "we already do inclusion" or "we've tried that before," implying that such an overarching intervention is either already standard-issue or unrealistic. We are aware that inclusive services have been-and still are-implemented poorly in some schools across the United States and implemented well in others.

It's worth the work to get the inclusive approach right; decades of research has demonstrated that, when implemented properly, inclusive or integrated services can have positive social and academic results for students with disabilities, as well as English language learners (Peterson & Hittie, 2003; Zehr, 2006). A recent longitudinal study (Cosier, 2010) studied thousands of students across the United States and concluded that each hour a student with a disability spends in general education produces a significant gain in achievement. This effect held true across all disability categories, even when controlling for factors like race and socioeconomic status.

Resource Restructuring

Adopting reforms to create schoolwide inclusion at River View and Summer Heights, and getting real commitment from staff and administration to move in this direction, took a year of planning. We began the process in 2007 by helping the schools' staff members learn about the philosophy and practice of inclusion. We formed a leadership team to spearhead a planning process that started with examining the existing data-an essential component of any inclusive reform intervention.

At each school, this team examined how the school was currently providing education to students of different ability levels and compared the school's standard method of operating with the inclusive philosophy. Both schools eventually created a new service model that all but eliminated separate special education environments.

At both River View and Summer Heights, more than half the school population receives free or reduced-price lunch. Twenty-four percent of River View's learners, and 21 percent of Summer Heights's students, receive special education services. At Summer Heights, examining the current landscape involved creating a visual representation showing all classrooms in which special education teachers and general education teachers worked, with arrows indicating which kinds of educators pulled students from which specific classrooms for services. This bird's-eye view of how and where all Summer Heights staff worked also showed how many multiage, self-contained spaces the school had for students with disabilities and how paraprofessionals were used. When the leadership team presented this visual representation at a planning meeting about school reform, all staff saw clearly how human resources were distributed.

It became clear that this service delivery plan concentrated the number of kids with intense needs into certain classrooms, some of them self-contained spaces that did not teach the standard curriculum. Many other classrooms at Summer Heights lacked both students with disabilities and additional adult support. This model excluded some students from the general education curriculum, standard modes of instruction, and social interaction with nondisabled peers for some or all of each day.

Together, staff members critically examined this bird's-eye view of their staff configuration with inclusion in mind. They looked for ways to redeploy staff that would create classrooms with a better balance of students with and without disabilities. Teams of teachers created proposals for how to rearrange staff, create new teaching teams, and rethink student placements. The leadership team looked over these drafts and created a final plan.

With the restructured staff and classroom configuration Summer Heights now uses, all learners are placed into general education classrooms. Special education teachers, in general, work with two general education classrooms and a teaching assistant to plan and provide differentiated instruction to a range of learners. The school staff begins planning and creating these collaborative staff teams in January so that many of the details and arrangements are in place before school starts the following fall. A few Summer Heights students also receive speech or physical therapy outside the classroom; virtually none do so at River View. We guided River View through a similar process and arrived at a similar model that responded to the unique needs of their students and staffing. In this restructured design, there are no more resource rooms or self-contained spaces.

New Roles Lead to More "Belonging"

The new teaching configuration carried out at Summer Heights fulfilled a second promise of inclusion: belonging. Students need to feel that they are full-time members of a general education classroom. In the traditional "pull-out" model Summer Heights previously relied on, students with the most academic difficulty were forced to undergo the most transitions and had the most segmented schedule. Under the inclusive model now in place, all students remain full-time members of one classroom community.

Teachers now have new roles and responsibilities. Special education teachers are expected to coteach with general educators; general teachers are no longer responsible only for general education students. Looking into several classrooms in Summer Heights and River View reveals how the changes in staff roles, teaching, and learning play out in an inclusive school.

In one classroom, 5th grade general and special education teachers are codesigning a writing unit about careers. They have grouped all students heterogeneously and are planning modifications and accommodations to allow all students to participate.

For instance, students can draw information for this project from pamphlets describing assorted careers that are available in the classroom, from video clips, or from speakers who presented to the class. Students can choose to work with a partner or alone. To compose a draft, they can write on traditional lined paper, on raised lined paper, or on chart paper on the wall (for students who need to stand up); they can use a computer program with word prediction software; they can use several graphic organizers to get started; and they can write with pens, markers, or "20/20 pens" (special marking pens with dark ink and very wide tips that help students with visual impairments see their own writing).

During the project, the special education teacher and general teacher explain these options and allow all students access to any of them. Once students begin writing, teachers circulate around the room answering questions and helping as needed.

In a middle school math class, the general and special education teacher have split the class into two halves. Each half is seated in a semicircle and the semicircles face in opposite directions to cut down on noise interference. Each teacher leads the same lesson in translating word problems involving math into algebraic equations, but each is instructing only half the class, allowing for a better student-teacher ratio.

Elsewhere, a team of general education teachers, special educators, and reading specialists who are responsible for educating the school's 1st graders have flexibly grouped these students for literacy instruction. Each adult plans a literacy circle activity for his or her group, individualizing the plan to meet the needs of these particular learners. For example, the special education teacher works with a group of nine students, only two of whom have identified disabilities. She differentiates instruction as students partner read using the "say something" strategy. Each partner reads a paragraph from a book, then pauses to allow both partners to say something about what they just heard. One student with a significant disability who struggles with decoding is responsible for reading only 30 underlined words during this partner read. The group then gathers as a whole, each student selects a role (such as summarizer, illustrator, or discussion director), and students discuss the book together.

Teachers at both schools receive extensive professional development about creating inclusive communities, achieving effective adult collaboration, coteaching, differentiating curriculum, and providing adaptations to the general education curriculum. This professional development is essential to making such sweeping changes.

At first, structural and collaborative changes like these were difficult. However, after the initial adjustment, many teachers at both River View and Summer Hill reported a heightened sense of belonging in their own schools and effectiveness in their profession. Reflecting on the changes, one teacher involved in this intervention said,

I no longer have the students with the most significant needs missing the most instruction... wasting so much time in transition, missing valuable core curriculum. Now these services are brought into the classroom seamlessly and everybody benefits... . Let's not forget the social stigma associated with pullout programs. These kids now finally belong somewhere... all day long.

Photo courtesy of Syracuse University.

More Learning For Everyone

Since restructuring into a more inclusive learning environment, both River View and Summer Heights have seen gains-for all students, but especially for students with disabilities-on NCLB-mandated standardized tests and in-school assessments given throughout the year. As reflected in Figure 1, achievement gains for students identified as having disabilities have been dramatic in many grades, with no decrease or even plateauing of performance among the general student population.

Figure 1. Math Achievement of River View Students

Percent Scoring at or Above Grade Level

These schools are not alone in seeing robust gains after adopting inclusive reforms. In other schools, we see similar-and even greater-gains (Theoharis, 2007). Students with a disability are not the only ones whose achievement soars in such an environment. For example, three years into a similar intervention implemented by a Wisconsin elementary school, the percent of students eligible for special education who were classified as "at or above" grade level on the state's performance measure had shot from 18 to 60. Black students' performance on the same measure went from 33 percent to 78 percent "at or above," and 100 percent of English language learners achieved this level of performance, up from 17 percent (Theoharis, 2007).

Some teachers, administrators, and parents believe that an inclusive intervention will water down teaching and lower the achievement of all students. Yet at these schools and others across the United States, including students with special learning needs in general education classes resulted in a more effective education for all.

In the end, schools, districts, and the education system can decide to spend more time and money on methods that separate students and apply remedial interventions. But we believe that the more time schools devote to developing special programs that separate students and staff, the more they will come to rely on those same programs, thus sending more marginalized students out of general education classrooms. Summer Heights and River View show an alternate way: School can do the hard work of creating inclusive, heterogeneous classrooms. Pursuing this path would be a paradigm shift, one that requires educators make three significant promises-to include all students, help all belong, and allow everyone to learn together.

References

Cosier, M. (2010). Exploring the relationship between inclusive education and achievement: New perspectives. (Unpublished doctoral dissertation). Syracuse University, Syracuse, New York.

Peterson, M., & Hittie, M. M. (2003). Inclusive teaching: Creating effective schools for all learners. San Francisco: Allyn and Bacon.

Theoharis, G. (2007). Social justice educational leaders and resistance: Toward a theory of social justice leadership. Educational Administration Quarterly, 43(2) 228-251.

Zehr, M. A. (2006, December 6). Team-teaching helps close language gap. Education Week, 26-29.

Authors' note: All names are pseudonyms.

George Theoharis andJulie Causton-Theoharis are associate professors at Syracuse University in New York.

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October 2010 | Volume 68 | Number 2 Interventions That Work George Theoharis and Julie Causton-Theoharis Kenny is a student at River View, a public K-8 school in central New York. Kenny spent his first few school years in a self-contained special education class because, according to an evaluation, he was "too disabled to be in the general education setting."

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Videos on Rethinking Disability, Inclusive Education, Respectful Support, Institutionalization, Legalized Euthanasia

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Videos on Rethinking Disability, Inclusive Education, Respectful Support, Institutionalization, Legalized Euthanasia

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#disability #models #inclusion #selfdetermination

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You Get Proud by Practicing - A Poem by Laura Hershey (7:20)
Laura Hershey, a well-known disability rights activist, wrote the poem " You Get Proud by Practicing," which has become a hallmark of the Disability Pride Movement.
Norman Kunc did animated video rendition of Laura's poem.

Fostering Ability through Opportunity - There is more to life than life-skills (14:52)
Norman Kunc challenges the presumption that people with disabilities need to improve their "ability" in order to have the "opportunity" to go into the community. He maintains that we have "got it backwards." The opportunity to be in the community is the best way to acquire and impove "ability."

Presentation: Inclusive Education: Rediscovering Our Right to Belong" - (Presentation given at Harvard Graduate School of Education)
In a fast paced and challenging presentation, Norman Kunc maintains that inclusive education is not simply something we "do" to students with disabilities, but involves a school making an intentional commitment to build and maintain a sense of belonging for all students and adults in the school. He maintains that our current emphasis on achievement, tracking, and segregation leads most, if not all students to see their membership in school and their "sense of belonging" as something which must be earned.

A central tenet of inclusive education is that belonging is an inherent need of all people and must not be reserved solely for the "best of us." Learning to value and work with a diversity of people is the first step in building an education system which fosters a sense of belonging among students and staff. Inclusive education may prove to be a vital catalyst in this process.

Hell-Bent On Helping : Friendship, Benevolence, and the Politics of Help
Many of us have created friendship circles and buddy systems in an attempt to help students with disabilities feel more included in their neighbourhood schools. In spite of genuine efforts and admirable intent, these supports have often perpetuated traditional attitudes of charity and benevolence.

In this presentation, Norman Kunc and Emma Van der Klift examine the issues of friendship, help, respect, and benevolence. They suggest how teachers can support a student with a disability in their class without turning him/her into the "poster child" of the school.

In Part 1, Emma talks about how "help" can contaminate relationships.

In Part 2, Norm talks about "Attacks of Help," as well as the underlying dynamics of help.

In Part 3, Emma talks about some of the essential components of authentic, respectful relation relationships.

When The Moon Come Up (6:57)
Norman Kunc was born with cerebral palsy, Although the doctors recommended that he be institutionalized, Norman's parents ignored their advice and took him home. Norman has received a Masters of Science in Family Therapy and become a well-known disability rights advocate, yet he has always been haunted by what his life might have been like had his parents followed the doctors' advice. - In a collage of powerful images set to poignant music, Norman Kunc expresses the terror of almost having been incarcerated for life.

Putting up with The Jonses (4:11)
When the Celtic Rock band, Sprit of the West, was playing in Winnipeg, a friend gave the band a tour of the Manitoba Developmental Centre (an institution for people with intellectual disabilities ). The band members were so horrorfied at what they saw, they wrote the song, Putting up with The Joneses.

Norman combined video footage of 2 live performances of the song with images from the book, Christmas in Purgatory, to make this hard-hitting music video about institutionalization.

The Euthanasia Blues (7:24)
Norm and Emma wrote this song to put forth the disability rights perspective on legalized euthanasia and physician assisted suicide.
Sung & performed by Bob Nelson
Video by Norman Kunc

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INDEX - VIDEOS - Broadreach Training and Resources

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You Get Proud by Practicing - A Poem by Laura Hershey (7:20) Laura Hershey, a well-known disability rights activist, wrote the poem " You Get Proud by Practicing," which has become a hallmark of the Disability Pride Movement.Norman Kunc did animated video rendition of Laura's poem.

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#expert #autism #models

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Welcome to Autistic Advice, a new, semi-regular column where I respond to questions about neurodiversity, Autism acceptance, and disability rights from Autistic people and their allies. For the past month or so, I've had a Curious Cat question box open, and have accepted questions from educators, parents, and Autistic people themselves. You can anonymously send me questions there as well.

Before we dive in, a bit about me: I am a 32-year-old Autistic person who didn't realize they were on the spectrum until their mid-20's. My whole family is full of people with Autism-spectrum traits of one kind or another, and at this point in my life I socialize with fellow neurodiverse people almost exclusively. On Medium, I've written extensively about my experiences, and the experiences of other adult Autistics whom I've interviewed. Though I am a research psychologist, I am not a therapist, and this column should not be treated as therapy.

My first question comes from an educator who works with Autistic children and adults. They wanted to know how they could teach their Autistic students to take pride in their own disabilities. They wrote:

When did you start to see your neurodiversity as an asset rather than a deficit?

I work with some really amazing kids that I'm convinced are going to be the next CEOS, leaders and game changers of this world. Right now though, their peers can't see how amazing they are, and this is (partly) the lens through which they see themselves. Also, sometimes their parents aren't much better.

So when did you start to see yourself differently in a positive way? (I'm assuming you didn't always see yourself as positively as you do now- disregard if I'm incorrect).

And also, was there something that someone said or did that helped you develop this positive perspective of yourself? Was there anything you did that really felt like it helped facilitate this shift?

Anonymous

Hi Anon,

Thank you so much for your question. It's wonderful that you want to bolster your students' confidence, help them overcome the low opinion that so many peers (and parents!) have of them, and empower them to live their best Autistic lives. It's also so great to see you are approaching this question with the built-in assumption that Autism isn't a shameful disability or something to be hidden away or overcome; every Autistic person deserves to exist in an environment where they are accepted as they truly are in this way.

So, it's clear to me you're an awesome, supportive educator who is going out of their way to do research on their students' experiences and wants to help them succeed on their own terms as best you possibly can. But I'm going to be annoying and challenge (delicately!) basically every completely well-intentioned assumption you've made in your letter.

First: When did I start to see my neurodiversity as an asset? Is Autism an asset?

I don't see being Autistic as an asset more than a deficit actually! Autism is just a way of being that is different, and less accommodated, than some other ways of being. It can be positive, or negative, but on balance I think neutrality or ambivalence feels like the right approach.

I have written about the positives of Autism, a lot, especially when I was early into being "out." In some ways I think that was a mistake.

I'm an especially lucky and privileged Autistic person. I run in social circles where being quirky and obsessive is cool, and not a huge social detriment. I have an easy time sticking to a schedule and getting work done. Most of the features of Autism that suck for me (like sensory overload) are relatively easy to hide.

I kinda hate that my success as an Autistic person has required I hide aspects of myself, and play up the side that is witty, hard-working, and respectable. It leaves me constantly at war with myself, in a way. I'm thankful for the positives of my Autism, but also resentful that my social acceptance is so conditional.

Which brings me to the next part of your letter: How can you help your Autistic students become the CEOs and world leaders they seem destined to be?

To that, I'd counter: Do Autistic people have to be "successful"?

When we focus on the "positives" of Autism, we run the risk of giving the wrong implication. Yes, there are Autistic inventors, comedians, CEOs, revolutionary thinkers and more, but Autistic people matter and should feel good about themselves no matter what they do or don't accomplish.

All Autistic people have equal worth, including the ones with intellectual disabilities, nonverbal Autistics, Autistics with zero social skills or interest in socializing, ones who won't ever become CEOs or game changers. A lot of Autistic people don't have the skills necessary to become big movers and shakers; some Autistic people who do have those skills will elect not to use them (read: they'll choose to not have their talents exploited by an employer).

There is this danger sometimes to playing up the advantages of Autism. I'm guilty of this sometimes. When we talk too much about the brilliance of Autistic people, it kinda implies that they need and deserve acceptance because they are an asset to the world. That is a very othering, objectifying message to send (intentionally or not). It suggests that embracing Autism is merely a means to an end.

I have to reject that. Making the world comfortable for Autistic people is a good in and of itself. The Autistic people who are severely impaired or won't accomplish "big" things in life are just as valuable as me and they deserve accommodations just as much as me. And all Autistic people deserve to have complex feelings about their disability, including a mix of pride and sadness, no matter what their disability looks like.

And that brings me to the next question in your letter: Do I feel positively about having Autism? Is Autism positivity the goal?

I like some aspect of being Autistic. Many of my Autistic traits have been socially rewarded. I can focus on tasks for a long time. I can read a lot, write a lot, ask pointed questions that help people see and understand problems. I sound smart when I speak. I've been rewarded for all that.

But being Autistic also sucks. I truly hate it, often. I hate how much loud noises bother me. I hate having meltdowns. I get sick on public transit. Bright lights make me angry. I am easily made irritable and I have a short temper. I have hurt people by saying flippant, dismissive things. I've missed social cues. I've spent years being lonely and not knowing how to make friends.

Autism is a mixed bag, and me feeling more positive about it isn't really the answer. What I need, and what more debilitated Autistics need, is acceptance and accommodation. I'm taking a play out of Your Fat Friend's playbook here. She often says that fat people don't need to feel more "body positive" in order to thrive; what they really need is fat liberation, an end to the oppression of fat people on a society-wide scale.

I think a flavor of the same thing is true for Autistics. We don't all need to see our disability as an asset. Indeed, for some of us it is not an asset. What we need is to stop being oppressed, excluded, dehumanized, and robbed of agency.

I think for the Autistic students in your life, it's important they know how diverse their neurotype is. They should know about the Dan Aykroyds and Chris Rocks and Anthony Hopkins and Nicole Cliffes of the world. It can be encouraging for them to recognize that there are successful people who are like them. If parents and non-Autistic peers get acquainted with these figures (or successful Autistic adults in your area), it might help bust open some of their stereotypes of what the disability is.

However, your students should also get to know nonverbal, intellectually disabled, and multiply disabled adult Autistics, and have some of those people in their real lives. They should meet Autistic women, Autistic trans people, Black Autistics, Autistic people who use wheelchairs, Autistic people who only communicate via typing. Your non-Autistic students and their parents should meet all of these people too. They should learn to embrace all types of disabled individuals, especially those who haven't "overcome" disability or done huge impressive things.

Shifting the attitudes of your non-Autistic students and their parents will pay huge dividends. The less people tie accomplishment to a person's worth, the less ableist our world is. The more accepting neurotypical people are of difference, the easier and more comfortable Autistic lives become.

Furthermore, your Autistic students should know that when they are suffering or struggling, it's not their fault. It's the fault of a society that doesn't accept them, and was built to be hostile to them. They don't have to "try harder" or succeed in order to prove they are full, complex humans. They are important people no matter what their lives look like - they don't need to achieve a thing, or be good at *anything*, to be an important and loveable person. And again, it's just as important that the non-Autistic students learn this too.

So, that's where I'd start. Work on accommodating your students & accepting them as they are. Surround all your students with a diverse array of disabled adults and role models. Teach all your students to see themselves (and other people) as innately lovable and deserving of accommodation, no matter what they do or don't accomplish in this life.

Thanks for your question! And keep up the amazing work advocating for your students!

Want to submit a question to Autistic Advice? Just use the Curious Cat box here.

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How Can I Teach My Autistic Students to Love Their Disability?

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Welcome to Autistic Advice, a new, semi-regular column where I respond to questions about neurodiversity, Autism acceptance, and disability rights from Autistic people and their allies. For the past month or so, I've had a Curious Cat question box open, and have accepted questions from educators, parents, and Autistic people themselves.

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Good general free reference textbook on disability

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Good general free reference textbook on disability

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#disability

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Understanding and Supporting Learners with Disabilities - Simple Book Publishing

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Understanding and Supporting Learners with Disabilities by Paula Lombardi is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License, except where otherwise noted.

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#UDL

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The UDL Guidelines are a tool used in the implementation of Universal Design for Learning, a framework to improve and optimize teaching and learning for all people based on scientific insights into how humans learn. Learn more about the Universal Design for Learning framework from CAST. The UDL Guidelines can be used by educators, curriculum developers, researchers, parents, and anyone else who wants to implement the UDL framework in a learning environment. These guidelines offer a set of concrete suggestions that can be applied to any discipline or domain to ensure that all learners can access and participate in meaningful, challenging learning opportunities.

Reenvisioning the UDL Guidelines

Because the UDL Guidelines are meant to be informed by feedback from the field as well as new research, they have been updated several times in the past. We are in the process of updating the Guidelines once again in our UDL Rising to Equity initiative.

This update will focus specifically on addressing systemic barriers that result in inequitable learning opportunities and outcomes. CAST aims to develop a transparent, inclusive, and community-driven process. If you are interested in collaborating and staying updated on our progress, we invite you to complete a brief survey.

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The UDL Guidelines are a tool used in the implementation of Universal Design for Learning, a framework to improve and optimize teaching and learning for all people based on scientific insights into how humans learn. Learn more about the Universal Design for Learning framework from CAST. The UDL Guidelines can be used by educators, curriculum developers, researchers, parents, and anyone else who wants to implement the UDL framework in a learning environment. These guidelines offer a set of concrete suggestions that can be applied to any discipline or domain to ensure that all learners can access and participate in meaningful, challenging learning opportunities.

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https://juststimming.wordpress.com/2011/10/05/quiet-hands/
#expert #regulation #communication #goals #stimming

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#autism #expert #race #intersectionality

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We Can't Address Disability WIthout Addressing Race. Here's Why

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Guest post by Lydia X. Z. Brown, autistic attorney and disability justice advocate. Like many autistic women and nonbinary people of color, I didn't find out I was autistic until many years after the average white autistic man usually does in early childhood.

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#expert #models

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A Disabled Person's Reflections on Specialized Services and Their Impact on People with Disabilities

An Interview with Norman Kunc
by: Michael F Giangreco Ph.D.
University of Vermont Burlington, Vermont
September 7, 1996 This article first appeared in: Physical Disabilities: Education and Related Services (Journal of the Council for exceptional Children Division for Physical and Health Disabilities) _____________________________________________________________________
The information included in this article is based on a semi-structured interview conducted with Norman Kunc by Michael F. Giangreco on July 4, 1995 in Montreal, Quebec, Canada. The interview was tape recorded with Mr. Kunc's permission and was transcribed. The contents include 6 selected portions of that interview and have been reviewed by Mr. Kunc to ensure that his opinions and ideas have been accurately presented in his own words.

Norman Kunc (pronounced Koontz) is a sought after consultant and speaker on a wide range of educational, disability, and social justice issues. He was born with cerebral palsy and attended a segregated school for students with disabilities from the age of three until 13 when he was included in a general education school. Earning a Bachelor's Degree in Humanities and a Master's Degree in Family Therapy have augmented a lifetime of learning from his experiences of being labeled "disabled" in North America. I have had the pleasure of being in the audience on a number of occasions when Norman has spoken, and each time I have come away with more to think about and act upon His message is at times provocative and his insights are undeniable. Here is a bit of my afternoon with Norman Kunc.
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Michael: Norman, thanks for taking time to sit down with me. Let's start by establishing what specialized services you received when you were in school.

Norman: Physiotherapy, occupational therapy, and speech therapy. Each specialist had her own room and they would pull me out of my classroom for a half an hour to an hour to get therapy, two to three times a week.

Michael: Could you tell me about some of your memories receiving those services?

Norman: First, I'd like to say that it's fitting that we are talking about rehabilitation issues on none other than Independence Day! To answer your question, I remember thinking that the physical therapy room was a very weird place.

Michael: Why do you say that?

Norman: They had all this strange equipment and weights and mirrors and bars. But the weirdest part of the physical therapy room was the staircase. There was this staircase with a handrail on either side but the stairs didn't go anywhere -- they went right into the wall! The physical therapist would come up to me and say, "Walk up the stairs."
And I'd say, "Why? They don't go anywhere."
But she'd say, "Never mind, walk up the stairs." So, I'd walk up the stairs and nearly kill myself getting up there. When I got to the top the physical therapist would say, "Good! Now walk back down the stairs."
I'd say, "Wait a minute! If you didn't want me up here in the first place, why did you ask me to walk up here?"

Michael: Did she give you a reason?

Norman: She would say, "You want to walk better, don't you?"
I didn't know any better, so I said, "Yeah." And what I learned at that moment in life was that it was not a good thing to be disabled and that the more I could reduce or minimize my disability the better off I would be. When I was in segregated school, I fundamentally saw myself as deficient and abnormal. I saw myself as inherently different from the rest of the human race. The implicit message that permeated all my therapy experiences was that if I wanted to live as a valued person, wanted a quality life, to have a good job, everything could be mine. All I had to do was overcome my disability No one comes up and says, "Look, in order to live a good life you have to be normal," but it's a powerful, implicit message. Receiving physical and occupational therapy were important contributors in terms of seeing myself as abnormal. Every part of my life, from the minute I was born, told me that I was abnormal, whether it was getting physical therapy, going to Easter Seal Camp, or wearing leg braces at night.

Michael: How did you react at the time?

Norman: Well I wanted all those things, to have a good life -- so I ended up declaring war on my own body. It was me against my disability; and my disability was my enemy. I was bound and determined that I was going to conquer that disability.

Michael: How did you propose to do battle with yourself?

Norman: I turned into a kid that physiotherapists only see in their dreams. If they wanted me to do ten repetitions of a certain exercise, I did 20. If they wanted me to hold a precarious balance position to the count of ten, I held it to the count of 30. I was determined I was going to get to be a valued person. And if that meant conquering my disability, so be it.

Michael: These early experiences happened when you were in a segregated school. What happened when you went to a regular school?

Norman: I thought I could overcome my devalued status as a person with a disability by being in the regular school. At first the school administration wanted to send me to a special class for students with physical disabilities in a regular school about ten miles from my home. I said, "The hell with that!" First of all, I wanted to go to the regular school in my neighborhood because, for me, I guess that represented being valued. Secondly, I was offended by the stigma of being in a special class. I didn't want all my nondisabled neighborhood friends to see me getting on that big blue bus for kids with disabilities. Why not just hang flowers around my neck with a sign that say "crippled" I wanted to avoid all of that.

Michael: From what you are saying it sounds like there were a lot of professionals who saw your disability but didn't see you as a person.

Norman: That's true. If I had to describe myself to you now I'd say that I have an undergraduate degree in humanities and Master's in family therapy. I got divorced, now I'm remarried and I live with Emma and two step kids. I like classical music and jazz. Having cerebral palsy is one small aspect of who I am: it's part of who I am, but it's not the defining characteristic that makes me who I am.

Michael: When people disproportionately focus on your disability, how have they treated you?

Norman: People make unwarranted assumptions about who I am as a person because of my disability. People in airports sometimes think I have a mental disability or treat me like a child. Sometimes they assume that I need their help. People sometimes assume that people with disabilities are asexual, have unresolved anger, are in denial, or that all of us must be lonely or sad, that our lives are filled with frustration. The fact is that a very small part of my life gets blown up into a very big part. Unfortunately, too many people see me as nine-tenths disability, one-tenth person.

Michael: What has been the impact of these assumptions on your life and lives of other people with disabilities?

Norman: It makes you feel that you are not quite human. Almost like you have to earn your right to be human. In earning your right to be human, what do you get? Human rights! So when you are perceived as less than fully human, what typically are rights for nondisabled people become privileges for people with disabilities. It's like if you have a disability they are doing you a favor by letting you live in the community. As soon as I demonstrate I am mentally capable then I have earned my right into the community. I see this going on not only with people with disabilities but also around the whole issue of poverty. You have to demonstrate your merit. It's categorizing people as producers versus non-producers. When people see that I am intelligent and articulate, the message is, "Even though this guy has a disability, he can make a contribution to society. Therefore we'll let him in!"

Michael: It sounds like what you have experienced is a classic example of what Marc Gold called the "competency/deviancy hypothesis where the more competent the person is perceived to be, the more others will tolerate deviance in him. Of course, even that language, the term "deviance," is so loaded with negative connotations.

Norman: I prefer to think of my disability as type of diversity rather than deviance or deficiency: my disability is just one characteristic or attribute among many that make me who I am. People do not need to prove their worthiness. Obviously, what we are talking about here is a human rights issue. We need to establish the unconditional and inherent worthiness of people regardless of what combinations of diverse characteristics they present.

Michael: When did you start feeling as though your disability was a characteristic of your personal diversity rather than a deficiency?

Norman: When I was a university student. One night I was at this pub with a bunch of my friends. At one point, one of the guys started imitating my voice. It surprised me and I didn't like that he was doing it. So, afterwards I went up to him and said, "Why did imitate my voice?"
He said, "Because that's how you talk."
I told him, "Hey, I'm articulating my words. I'm using my voice clearly. I'm not drooling. You imitate my voice and my whole show goes out the window."
And he said, "Norman, why are you trying to be non-handicapped?" And that caused a categorical shift in my thinking. We talked for a long time that night and went through a lot of beer. Finally it dawned on me that I had the right to be disabled. And rather than seeing my disability as a deficiency, I began to see it as part of the inherent differentness among people; it was simply a characteristic. I came to understand that it really was no different from any other characteristic like height or weight or race or gender. So to say it another way, prior to that incident in the bar, I saw myself as abnormal. You were the normal people, I was abnormal. You are all nondisabled, I'm disabled. I saw myself as categorically different from most of the human population. I was part of a group with all the other abnormal, deficient, broken, disabled people. Once that shift happened to me I said, "Wait a minute, I'm part of the normal diversity of the human community. I'm normal in that I am diverse." I began to think, "Wait! Why has this small characteristic of who I am been used as a criteria to put me in a segregated school, to do this to me, to do that to me." Everything that happened to me suddenly came up for evaluation.

Michael: Let me back up for a moment and ask you about your experiences receiving therapy services when you went to regular school. Did you continue to receive the same types of services to the same extent.

Norman: No, it pretty much stopped.

Michael: Who made that decision?

Norman: Well, I think the therapists actually made the decision because they thought I could do a lot of things, plus I wanted to stop anyway. Ironically, my speech improved the most the year I quit speech therapy.

Michael: It sounds like by high school you had strong ideas about what you wanted for yourself. Did those coincide with what your therapists thought was best for you?

Norman: I believe they thought they knew the best destination for me, but they were mistaken. The therapists usually saw the destination as one of two things. The more naive therapist often perceived the destination as being one of normalcy: to make me more valuable in society's eyes. So that was one destination. This may not even have been conscious to the therapists: I think it may have been unconscious.

Michael: Do you think people in special education and rehabilitation fields are professionally socialized and trained to think that way?

Norman: Yes, absolutely, but it goes beyond that. I think the field of rehabilitation is to people with disabilities what the diet industry is to women. We live in a society that idolizes a full and completely artificial conception of bodily perfection. This view of the "normal" body tyrannizes most, if not all, women so that far too many women in our culture grow up believing that their bodies are inadequate in some way. The issue here is that I want professionals to think about the whole parallel between dieting and rehabilitation. That's why I always tell people with disabilities, "Never do physical therapy with a therapist who is on a diet! " If she hates her own body, she'll inevitably do harm to yours!

Michael: You said there were two views. You talked about people who want to strive toward normalcy, whatever that is. What is the second view you alluded to earlier?

Norman: Now there may be some therapists who say, "Wait a minute, I don't want to make people more normal. I want to help them function better so that they can do more things." Although that seems to be a far more enlightened perspective, I still have serious concerns about it because professionals mistakenly equate functioning level with quality of life and that may not be what's going on for some folks. Professionals say, "If I can help you function better, then your quality of life will improve,"

Michael: This is a very mainstream view. What are your concerns with that way of thinking?

Norman: If you think about it, nondisabled people often don't equate the quality of their own lives with their ability to function in a certain way, so why apply it differently to people with disabilities? Rather than functioning level, I think most people would agree that the quality of life has to do with important personal experiences, feelings, and events, like relationships, having fun, and making contributions to the lives of other people. If you think about the most meaningful moments in life, they probably don't have to do with your functioning level. I'd bet they have more to do with other things like getting married, the birth of your first child, your friendships, or maybe going on a spiritual retreat; they probably don't have to do with your functioning level. Ironically, developing relationships, the opportunity to make contributions to your community, even fun itself is taken away from people with disabilities in the name of trying to get them to function better to presumably improve the quality of their lives. So I didn't get to go to regular school and then I missed the opportunity to make friends. Why? because professionals were trying to improve my quality of life by putting me in a special school where I am supposed to learn to function better. So they take away the opportunity for me to have friends and subsequently they actually interfere with the quality of my life.

Michael: Are you saying that people with disabilities don't need to learn to function better?

Norman: No, for me I guess the key is the difference between what I call "ease of living" and "quality of life;" many people confuse the two. Ease of living would be something to minimize the physical struggle, time, or energy that has to be expended in daily tasks. But just because life gets easier doesn't necessarily mean that my quality of life has improved.

Michael: Could you elaborate on what you mean?

Norman: Sure. In our society I think that many people assume that if they make their life "easy enough" that the quality of their life will naturally follow. So they focus on making their lives easier through earning more money, or getting a better house, whatever, assuming that this ease will bring about quality. Now, while I see ease of living as partially contributing to quality of life, I believe it's overly simplistic to assume that quality comes from ease. Instead, I think many things contribute to a quality life, like relationships, having a sense of belonging, fun, making a contribution, and to some degree, struggle itself.

Michael: In your presentations I have heard you talk about some very sensitive personal experiences you had receiving physical therapy and the impact it had on your life. Could you share some of those experiences?

Norman: When I was doing my Master's Degree program in family therapy, we did a section on sex therapy. In this context, we learned about we did exercises involving touch. Jokingly I said to my sex therapy professor, "I can teach it, just don't ask me to believe in it."
He said, 'What do you mean?"
I replied, "I hate being touched." At that time I was involved in a sexual relationship. I enjoyed touching the other person, but I did not like to be touched. About four months later we were studying the side effects of post traumatic stress disorder, specifically how it related to victims of rape and sexual assault. As we reviewed the symptoms, like resistance of touch, lack of trust, and others, I kept thinking, "Yep, that's me." Then I thought, wait a minute? Why do I fit all these categories?" That's when I first made the association between sexual assault and my own life. My body carried the memory and these discussions triggered me to think back to physical therapy.

Michael: Are you saying that you were sexually assaulted by a therapist as a child?

Norman: It depends on how you define sexual assault. If you define it as a forced sexual act, then no. But if you define sexuality as it is being defined today in terms of physical space, in terms of your own control over your own body, then yes, it was sexual assault because the ramifications for me were sexual around the whole issue of touch. What I am saying is that the very practice of physical therapy in some of its historically common forms can have abusive outcomes.

Michael: Could you elaborate on what you mean?

Norman: If you think about it, from the age of three until the age of twelve, three times a week, women who were older than I was, who were more powerful than I was, who had more authority than I had, brought me in to their room, their space, their turf. They took off some of my clothes. They invaded my personal space. They gripped me and touched me, manipulating my body in ways that were painful -- it hurt. Some of the exercises that were done in physical therapy were very painful, others were threatening. For example, there was the one where you are sitting or kneeling on the floor and the therapist kneels behind you and pushes you in different directions forward and sideways. The stated purpose of that activity is to improve reactive balance responses, but when I do this with nondisabled people as a training activity they find it enormously threatening when a person behind them is shoving them, especially when they never know what direction they were going to get pushed. When I was in school, I didn't know I had any other choice than to go along with it. So when you think of it, what did I have from the age of three up? People, women, who had more power than I did, took me in to their space, they took some of my clothes off, touched me in ways that were painful, and I felt that I had no choice in it. To me it's a form of sexual assault even though it was completely asexual. It's the power and domination that's is part of the abuse. It's important for professionals to understand and acknowledge the power differential that exists between themselves and the children with disabilities they are supposed to be serving.

Michael: Norman, I am sure you realize that their are many people reading this who would say that the therapy procedures you describe are done to people with disabilities for their own good, after all it has a medical basis and it's considered a "helping profession". How do you respond to people who say that there is nothing abusive about what therapists do, that they obviously have only the best of intentions for people with disabilities?

Norman: I am only speaking of my own experience, but my response has to do with the whole issue of intent. Sometimes people get hung up on my ideas because obviously the therapist does not have the same intent as a rapist. Obviously their intent is different, its positive, but there still can be a similarity of action and a similarity of consequence. My problem is that we can minimize the significance of the similarity of the action and consequences simply because the intent was positive.

Michael: So is part of your purpose to have professionals rethink what their intent really is and whether it matches their actions and the consequences that follow?

Norman: There is a difference between caring and competence. Many human service professionals assume that because they care for people their actions are inevitably competent. As soon as you challenge the competence of their actions, you're seen as questioning their caring for the person. It seems that competence, in their mind, is inextricably interwoven with caring. And they say, "But how could you say I'm sexually abusing this little boy. I like this little boy. I would never do a thing to harm him." You say, Yes, I know you care for him and your actions may be cruel.

Michael: So what do you say to well-intentioned professionals who want to be of service to people with disabilities?

Norman: We've got to slow down. First of all, very often the temptation of many professionals is to ask, "Tell me how to do it differently," rather then saying, "Help me think about this. " I hope people come to understand the complexity of the issues That's what I'm concerned about.

Michael: Is there other advice you would offer to people who want to reflect on their practice to improve it?

Norman: I tell teachers and therapists all the time, "If you really want to work on professional development, keep a journal." Spend a half hour every night and write about what your students are doing. You don't gain the ability to deal with the complexity of people just by acquiring an abundance of strategies. You gain the ability to deal with the complexity of people from the depth of thought. And many people avoid seeking depth of thought because they are too busy acquiring this endless library of disjointed strategies.

Michael: We certainly have a lot of strategies out there. Can you suggest any actions people can take to put them in some sort of perspective?

Norman: Read the stories of people with disabilities. Read the self-advocacy and disability rights literature.

Michael: If I am hearing you correctly, you are saying that there are no cookbooks, no easy answers about what is the "right" thing to do.

Norman: That's right. It's the same as being a man in our male dominated society. At some point, as a man, I have to enter the world with fear and trembling knowing that I will, through my functions of power and privilege, do damage to women. I try not to, but I will. There is no recipe for me to say, "If I do this, this, and this, I will be fine. It would be nice, but it's not the way it is.

Michael: What do you hope professionals gain from hearing this perspective?

Norman: I hope professionals will recognize that the very nature of their role is an oppressor because of the massive power differential between themselves and the children they work with, or should I say "work on." The good news is there are things we can do.

Michael: Like what?

Norman: Everyone can start with themselves and draw on their own experiences. For example, as a man I need to listen to the stories of women. Not with my own arguments going on in my head, "Yes, but, yes, but..." Instead, I need to listen to what it feels like to be a women who fears for her own safety when getting out of a car alone in an underground parking garage. I need to really listen to that. I need to really hear that story rather than beating myself up with guilt or shame because men historically have dominated women in our society. I need to listen to that story in a way that overlaps with my own experience with fear as a person with disabilities. When a woman listens to my story about airline agents being overly condescending to me, rather than her feeling guilty and saying, "Oh my God, I've done things like that to people with disabilities," I would like her to listen to that story and remember a time when a car salesman or a auto mechanic was condescending to her: "Yes dear, you wouldn't understand that." Relating people's stories to your own experience is part of developing that depth of thought and reflection.

Michael: So how does one avoid being oppressive when providing specialized services?

Norman: First of all, I think all advocates have to be self advocates. On Monday morning, the professional may not always do the best thing, but that is not the point. I think the question is not so much how can I guarantee to not do damage; the question is to recognize oppression, recognize the issues, and be willing to struggle with them.

Michael: What kinds actions can you envision as an outgrowth of recognition of the issues, reflection, and struggle?

Norman: I can envision three different therapists reading this interview and in the most positive ways having different ways of coming at therapy. One may talk about it with her/his colleagues; another might change the nature of how he/she does certain exercises with a child; another might keep a journal to help her reflect on her work All are relevant, but the important part is that they have listened to it and in some way tied it to their experience and then decided to take actions based on who they are as people, not as professionals, as people. I hope they will move forward conditionally, continuing to be cognizant that other stories may come up that will challenge them again; this is an ongoing struggle. Reflection, personal commitment, and the beauty of struggling with ambiguity is where real connections get made between people that raise them above the oppressor/oppressed scenario.

Michael: In that way will these professionals become better advocates for people with disabilities?

Norman: Let me back up a moment. My point was that all advocates need to be self-advocates. What I meant by that was I don't want professionals to advocate on my behalf believing that they now have this new found knowledge about what people with disabilities want. I don't want therapists to say, "I've read ten issues of The Disability Rag and then spout out all the politically correct jargon. No! I want therapists to tap into their experience as women, to tap into their experiences being in a position of less power, to pull that whole experience of women's rights and their own oppression into that therapy room. So when a case conference comes up where there is some issue being raised around intervention, around touch, or whatever, I want her to tie it to her own experience and can challenge things not just from the stories of other people, but from her own experiences.

Michael: Does that mean only people who have had some significant level of personal experience being oppressed can relate to the stories they hear from people who have been oppressed in other ways?

Norman: Do you mean, what do I recommend to you, Mike, as an able-bodied, straight, white, middle-class male? Listen well. Try to keep your mind still, long enough to appreciate the complexity of what is being said. I don't think people need to be members of an oppressed group in order to listen. I have met people of an oppressed group who can't listen. I think you are listening to my story more intently than many woman have listened to my story. Sometimes I think I can get a short-cut with women or with African-Americans I can use analogies about used car salesmen, diets, or racial discrimination.

Michael: Any final thoughts?

Norman: Just listen.

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GIANGRECO: AN INTERVIEW WITH NORMAN KUNC (1996) - Broadreach Training and Resources

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by: Michael F Giangreco Ph.D. University of Vermont Burlington, VermontSeptember 7, 1996 This article first appeared in: Physical Disabilities: Education and Related Services (Journal of the Council for exceptional Children Division for Physical and Health Disabilities) _____________________________________________________________________ The information included in this article is based on a semi-structured interview conducted with Norman Kunc by Michael F.

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Video on understanding inclusion and diversity

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Video on understanding inclusion and diversity

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#inclusion

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#autism #expert #communication #stimming

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There's a beauty in my hands moving in front of me: short, jerking motions that remind me of my brief foray into conducting music in middle school band. As my hands move back and forth, I begin to rock forward in the same internal rhythm. Maybe it's the beat of the music I'm listening to; maybe it's the tick of the clock.

I stim: performing repetitive motions as a form of sensory-seeking and self-grounding . Stimming is incredibly common among autistic people - to the point that it is one of the key diagnostic criteria for autism.

For as long as I can remember, I have had to move in some way to keep myself calm. I tap my fingers against my face, bounce my leg up and down, make random noises with my mouth, and fidget with small toys I keep with me.

I can't describe how exactly stimming feels but I can describe what it feels like to not be able to stim. Holding still makes my skin crawl and makes me feel like there's lead in my bones. It's unnatural to me.

I've had people assume that stimming means I am anxious or that I am upset over something. Quite the opposite: It's a normal, healthy, automatic action for me. I don't notice I'm stimming most of the time unless someone points it out to me.

Being forced to hold still makes me more anxious than stimming ever will.

The way stimming is often treated as a distraction and as unacceptable simply for existing, though, hurts me. I am fully aware of competing access needs - the idea that what one person needs to function in a space interferes with what another person needs - but the situation is never presented as one of access needs.

Instead, it's presented as one of professionalism. Being professional means I need to make eye contact, hold still, communicate using spoken language, be relaxed (but not overly relaxed), and adhere to a flexible (but not too flexible) schedule.

Negotiating these boundaries, especially when they're a hidden curriculum , is difficult for me. Then, when faced with the difficulty of navigating a world that doesn't make space for people like me, I fall back on stimming as a way to relax and calm myself. But stimming is "unprofessional," and the cycle begins again.

The controversy that non-autistic people kick up around stimming ( despite the fact that everyone stims ) is emblematic of how disabled people's coping mechanisms are often treated by non-disabled people. The methods we use to keep ourselves calm and interact with a world that isn't built for our needs are dismissed as unsuitable and immature.

In almost every case, there isn't the option of "Just have different coping mechanisms." For me, as an adult who has spent years testing the limits of which coping mechanisms actually help me and which ones are too noticeable for comfort (mine or others), the stims and other coping skills I have worked out are the only ones I can use.

If criticism of stimming was only "Please tone it down in professional situations," I might be able to tolerate it (although that disadvantages autistic and disabled adults). It's not, though.

Many autistic children are taught from a young age that they need "quiet hands" in order to participate in class. Quiet hands don't fidget; they don't tap; they don't move; they don't skim their fingers over surfaces to feel the textures and take in the world. Quiet hands sit, silently, and autistic children with quiet hands appear as non-autistic as possible.

Which, frankly, is bullshit. I have yet to meet a child who didn't run around, flailing wildly, and touch everything they could if given the chance. All children stim, all children have loud hands, all children act out because they're children and don't have the most developed self-control.

But if you're autistic, excess energy is a pathology. Cue "quiet hands" and cue being held down, lectured, denied breaks, slapped , and possibly shocked with electricity for doing something that comes as naturally and as necessary as breathing.

People often bring up questions like, "But what if a child is stabbing themselves with scissors?" Take away the scissors and try and redirect their attention and sensory-seeking to something less dangerous! This is the same advice often given for people looking to redirect self-harm urges ; yet it feels like people who work with autistic children are painfully unaware of it.

My work as an autistic and disabled self-advocate centers around radical change of oppressive social structures, including the idea that stimming is wrong or needs to be fixed.

I believe that nobody is too disabled for self-advocacy and that everyone deserves a chance at the life they want. When stimming is called "disruptive" or "improper" simply for existing, so are autistic people who stim.

I can, if I want to, put together a passable non-autistic work persona. I've taught myself to feign eye contact, to speak as naturally and relaxed as I can, to be available as much as possible even when I'm burnt out from social interaction. It takes a toll on me, though, and that's where stimming comes in.

To be "professional," I give up so much of what is natural for me. To give up stimming as well would leave me unable to function.

As Julia Bascom, the director of the Autistic Self-Advocacy Network, puts it in her poem " Quiet Hands ": "[Until] I move 97 percent of the way in your direction you can't even see that's there's a 3 percent for you to move towards me." Autistic people are so often asked to "meet in the middle," when in reality, it's not really the middle at all. It's 95 percent or 97 percent or 100 percent of the way to where non-autistic people are.

There are no perfect solutions here, but a start is to be more understanding. Don't assume someone is not trying to be professional or is trying to be a distraction. Accept people for who they are, stimming, fidgeting, and all.

Stimming is a way of processing and being that is core to the autistic experience. Autistic people cannot stop it, and in many cases we cannot "turn it down." I guarantee we are trying to be as unobtrusive and quiet as possible. The world has already taught us to be that way.
Donnie TC Denome PZ '20, CGU '21 is a 4+1 Bachelors/Masters public health major from Sunnyvale, California, and one of the TSL Opinions editors. Their favorite thing about the winter holidays is the availability of peppermint-flavored beverages.

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OPINION: Loud hands are proud hands: The joy, freedom, and pain of stimming | The Student Life

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There's a beauty in my hands moving in front of me: short, jerking motions that remind me of my brief foray into conducting music in middle school band. As my hands move back and forth, I begin to rock forward in the same internal rhythm.

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Short films about disability and transition

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Short films about disability and transition

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#transition #postsecondary

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Intelligent Lives on Facebook Intelligent Lives on Twitter Intelligent Lives on Instagram Search this website

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#autism #social #expert

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Understanding Social Cognition in Autism | Diverse Intelligences | Stories of Impact

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Engagement chapter excerpt from book
#UDL #engagement #adaptations