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Reflection/Opinion Prompt:

When reading about the experimentation conducted on disabled children, it is upsetting and disturbing that someone could experiment on children who were unaware of the situation. This was such a severe and shameful misstep on the part of medical professionals who experimented on such innocent children who had done nothing unjust to deserve this inhumane treatment.

It was unethical and an injustice for these children to be victims of this conducted experiment because, as Dubois noted, they were "unable to give consent or understand the risks involved..." (p. 3). These children had no autonomy and had no chance to speak up for themselves during this experimentation, as well as the parents, who were not told the whole truth majority of the time. The second principle, nonmaleficence, is to not create harm or injury to the patient. However, that was also broken when the children were infected and harmed with hepatitis. Beneficene was ignored as it was not beneficial to the patient and they used these children to find a cure/vaccine. Finally, the last principle, justice, was ignored because it was not fair to these vulnerable and are not equal for treatment were used for this research and experiment.

Critical Anyalysis Prompt:

"...critical disibility studies aim to reinterpret what it means to be disabled..." (humanities p. 1249). This explores on the definition of the fact that disability studies are the study of how we look at people in our society who have disabilities and what it means. The medical model sees disabilities as a problem in someone that needs fixing or hidden while the social model states that disability is stigmatitized and is a social construct rather than a medical condition which needs fixed.

In the article, skin tooth and bone, "Disability justice is a developing framework that some call a movement" (p. 10). This is an activist movement which is led by disabled communities to show that disability studies "...is contextutual, it changes" (p. 9).

Overlaping bioethics, disability studies, and disability justice show that there isnt always good care for not only people with disabilities, but everyone in our community. These control and isolate people aroind us and show that there must be real care within our health care systems and society to respect each bioethic principle that each patient deserves.

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Reflection/Opinion Prompt:

When it comes to Willowbrook State’s experimentation on mentally ill children, it startled a lot of families and raised a lot of unknowns when considering the children had no consent and created a vulnerable environment for both the kids and their parents which creates a liability in their idea. The Autonomy of this issue caused a ton of concerns considering the children’s placement in the school and their overall well-being. This is also more evident because according to the framework drawn by DuBois, he adds “In the Willowbrook studies most intermediate ethical principles are relevant: beneficence insofar as the ultimate aim of the study involved infecting children with the hepatitis virus; justice because institutionalized and vulnerable populations often bore the burdens of research without enjoying the benefits; and autonomy because the children could not give consent and their parents permission may have been underly influenced” (DuBois, 2008). This notion in Willowbrook brings a very sadistic and manipulative environment. This is due to the lack of consideration for both the well-being of the kids and the influence on the parents. Furthermore, no child deserves to be treated like an experiment because they too are humans and should have a say on what they feel is good and bad for their own bodies. Putting mentally ill children in this environment regardless would create a lack of accountability and self-worth for both the kids and the parents.

Critical Analysis:

Disability studies are the understanding, process, and consideration of disabled people which can be shown physically, mentally, and emotionally. The discipline of this field is different from other fields because of the awareness, empathy, and experimentation in this field. For example, before the disability rights movement people who were mentally ill were mistreated, and no repercussions were acted upon to punish the person doing so. Furthermore, accessibility was also more difficult at the time because people were not taking part in understanding mentally ill people (Sins Invalid, 2019). This evidence shows us that disability justice must be held much more seriously, especially in showing Autonomy and care for patients and children. To create better advantages for disabled people, we must create better opportunities for these patients by installing more conveniences. For example, ramps, more elevators, larger bathroom spaces, more flat homes, etc. So, in the end to to create a much safer and more beautiful environment for disabled people, we must consider these injustices and start creating a change for more safe and effective communication so that way these disabled people have more autonomy in their lives and create a greater sense of worth.

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Reading about the hepatitis experiments on disabled children at Willowbrook State School made me feel shocked and angry. The school was supposed to care for these kids, but instead it used them as test subjects. It felt like their rights and humanity didn’t matter.

Looking at this with the bioethical principles from McCormick (n.d.), it’s clear why it was wrong. The children had no autonomy because they couldn’t give consent, and their parents often weren’t told the full truth. Beneficence was ignored because the research was not about helping the kids in front of them. Non-maleficence, or “do no harm,” was broken because the children were infected with hepatitis. Finally, justice was ignored because only disabled kids in a state institution were chosen, not children from wealthier families. DuBois (2008) also reminds us that in ethical cases we must respect people’s rights and limit risks, which didn’t happen here. Even if the research led to a vaccine, it was unethical because it cost children their dignity and safety.

Critical Analysis

Disability studies looks at disability in a new way. The medical model sees it as a problem in the person that needs fixing, while the social model says disability is shaped by barriers like stigma and lack of access. Disability studies focuses less on “what’s wrong with the person” and more on how society creates disability.

Disability justice goes further. It is an activist movement led by disabled people, especially people of color and queer disabled people, who show how disability connects to race, class, and gender. While disability studies is more academic, disability justice is rooted in activism and lived experience.

Connecting bioethics, disability studies, and disability justice gives us stronger ways to think about care and confinement. Bioethics gives rules like autonomy, beneficence, non-maleficence, and justice. Disability studies asks how institutions and systems create disability and confinement. Disability justice reminds us to listen to disabled people themselves and see how different kinds of oppression overlap. Together, these frameworks show that real care must respect dignity, fairness, and freedom, not just control.

Conclusion

The Willowbrook case shows what happens when ethics and dignity are ignored. Disabled children were treated as less than human, and that can never be justified by “science.” The lesson for me is that real care must always center people’s rights and voices. A cure or treatment is not worth it if it comes at the cost of harm and control.

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Reflection

At first, I was confused when I started reading about the experimentation was being conducted on disabled children at Willowbrook State School. After reading and seeing what the time was (being the 1950s to 1970s), it did make some sense, but don’t agree with it at all. The research for the hepatitis vaccine was unethical. Even with the parental consent, I believe that it this falls under some of the ethical problems, like volitional. With volitional, which is when “is what was/I have done right to do,” (DuBois, p.g.1-2). During this time, it feels that what the scientist was doing for the better of others and thought it was right to test it on children that are more outcasted. However, feeding children strands of hepatitis isn’t okay, even if they could get it naturally for the conditions of the school. I think what would have been right, is if the children received the vaccine, with parental consent, then naturally contracted hepatitis to see if the vaccine had improvement. For biomedical ethics, “beneficence and non-maleficence are in conflict, but the interpretation of what these principles apply are controversial.” (Dubois p.g. 3). With beneficence is trying to balance the risks and cost of the experiment and non-maleficence trying to avoid harm. I think giving this disable children live strains of hepatitis is a huge risk and could have caused extreme harm, if the vaccines weren’t working properly.

Critical Anaysis

Disability studies are the understanding of experiences of people with disabilities, that also examines the social, cultural, political, medical, and even the historical principles. The two main models are the medical and social models (Dr. YG notes, slide 18,20).  The medical model being that the disability or impairment is the issue and it can be cured with different methods include include but is not limited to institutions, various therapies, rehabilitation, etc. While the social model, is that the social structure and how we see the disability is the problem. Nothing is wrong with the person; they are just being excluded because they aren’t getting the different tools for accessibility. The field of disability studies approaches disability different because the social model is typically more likely to be used. For other fields like genetics, they are mostly likely going to use the medical model because they are wanting to cure the disability rather than how could society change.  While disability justice is more about creating an equal and accessible society for those who do have disabilities and are less able body. Activists movements have connected to disability studies because it has allowed them to gain access to right that were never in the question at first, like working or basic accessibility. Activists have also allowed for companies or businesses to get put into the spotlight for bot following regulations, which could lead to boycotts and lost of interest. Bioethics, disability studies, and disability justice frameworks could be useful in exploring the complexities of care and confinement because you can get a deeper understanding of the conditions and how ethical the treatment can be.

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When I had initially came across this is one of the readings, I was immediately disgusted and felt as this was just false news. My mind couldn’t quite comprehend that such evil people would do this to helpless children. The overall research conducted in order to develop a hepatitis vaccine was not ethical at all what so ever. Starting off with autonomy,”the children could not give consent and their parents’ permission may have been unduly influenced” (DuBois, Pg 4). Due to the children having neurological issues affecting how they comprehended information and their speech they could not fully give their consent to this experiment. In the article it had also talked about how the parents wanted what was best for their children and in such cases had given consent to the institution without fully knowing about the experiments. Next with beneficence, the aim of creating the vaccine was to help the public’s health and unfortunately the children experimented on would not receive the same benefits of the newly created vaccine due to being infected with the hepatitis virus. Furthermore, me move on to nonmaleficence with the goal intended to do no harm, in this case it was the opposite, “because the study involved infecting children with the hepatitis virus” (DuBois, Pg 4). Due to the children being infected with the virus this was causing harm to them and ultimately their health. Lastly, justice comes up,”because institutionalized and vulnerable populations often bore the burdens of research without enjoying the benefits” (DuBois, Pg 4). This dire situation is not just at all especially taking into account that they will never see the benefits of creating this vaccine as well as having to live with the hepatitis virus for life.

Disability studies is looking at how society has defined and oppressed disabled people rather than looking at disability being a physical or mental deficit. “In the emergent field of critical disability studies, my grandfathers experiences, like those of so many who have been traumatized by war and conflict, are understood in the context of the barriers society place on those soldiers - barriers that served to pathologize, confine, and ostracize them” (Reaume, Pg 1). Overall, diasability studies looks at how society confines these ideas of disabled people in a box. When talking about the medical model and disability studies, this is when they view disabled people as a personal problem that needs to be fixed, often times with medicine. On the other hand, the social model and disability studies looks at how society puts up barriers and how we as a society have not put them into consideration with the lack of accommodations present. Disability justice is advocating for disabled bodies and minds in order to get their needs met by complying to accommodations and seeing them as equals. “A disability framework understands: all bodies are unique and essential, all bodies have strengths and needs that must be met, we are powerful not despite the complexities of our bodies but because of them, all bodies are confined by ability, race, gender, sexuality, class…” (Sins, Pg 12). Disability justice is the empowerment of others with disabilities and looking at the beauty of them, wanting to protect every single one of them. Disability justice and disability studies do connect on the way that they think it is a social construct that they are not able bodies and a ‘burden’ to society. Using bioethics allows us to see the rights disabled people have in institutions and how they deserve autonomy, justice, non maleficence, and beneficence because they are human beings and their lives matter too.

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During my reading of the text, A Framework For Analyzing Ethics Cases, it was incredibly interesting to read about how an experiment such as the one done on disabled children at Willowbrook State School would even be able to happen. Considering the fact that the children were vulnerable, unable to give consent or understand risks, and were exposed to a hepatitis filled school, it would almost seem as though no thought was given at all to the lives of the actual children. It also leads one to wonder if the situation would have been treated much better if the children were not disabled. Due to all of this, one can make an educated guess and say the research conducted to develop a hepatitis vaccine was not very ethical. Despite the aspects already listed, one could make an even bigger argument that the research conducted was not ethical using certain bioethical principles such as autonomy. In this situation, from an autonomy standpoint, the children could not give consent and their parents permission may have been unduly influenced. Another principle that appears is beneficence which happens to be in conflict with nonmaleficence. Beneficence because the goal was ultimately a positive one but nonmaleficence because the study involved infecting children. Finally justice because unfortunately vulnerable populations are usually caught up in this kind of research.

Through reading Understanding Critical Disability Studies, I learned about the multiple different ways disability studies are defined. Critical disability studies are focused on seeking change to conventional notions of disability studies. The social model of disability interprets disability as a construct imposed by external powers. The cultural model of disability focuses on how the reality of disability is understood within a cultural context. On the topic of disability justice, per the reading from What Is Disability Justice, it is something that changes. It is something that improvises and changes. It is still a developing framework and some may find it fit to be called a movement in the world today. This concept connects to disability studies in the sense that it is growing and changing. Disability studies are something that need to be valued more in the world and they are constantly being improved and changed for the better of individuals with disabilities. Disability justice is a growing and developing concept that can contribute to the field of disability studies.

To wrap up, it is important to look at how disability studies, disability justice, and how bioethics could be useful in exploring the complexities of care and confinement. In reading the Principles of Bioethics, it is possible to learn that there are four most commonly accepted principles of health care ethics: principle of respect for autonomy, principle of nonmaleficence, principle of beneficence, and the principle of justice. These four principles each play a role in the way patients are treated in the medical field. Combining this concept with disability studies and disability justice can provide a lens into the many complexities of care and confinement.

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Disability studies in a social aspect is loosely defined as seeking equality and universal accommodation for people with disabilities. In this focus the main approach is to combat conventional notions of people with disabilities. The thing that they desire to get done the most is change the world to fit the needs of people with disabilities, not the other way around. In a medical sense of disability studies they focus on bringing medical humanities into the biomedical model. This allows for medical professionals to “find new ways to ask questions” this also allows for the ability of medical professionals to take in outside factors into consideration when looking into their clients and this clients history. This also playing into them disability studies approach of making the world accommodate disabled peoples and not making disabled peoples accommodate to a world that does not support their growth or see their value. On the other hand, disability justices main focus is to combat the negative effects of ableism. They seek to combat and advocate for disabled people of all races and religious denominations through creating alternative practices that have their foot in some sort of justice for people who have faced the hard reality of ableism. This looks similar to disability studies because they are both fighting to protect the life of a person with an impairment. But it differs because disability studies focuses on advocation instead of action that disability studies focuses on. Bioethics, disability studies, and disability justice frameworks go against medical and institutional narratives. Bioethics introduces ethical questions, while disability studies criticizes how societal structures make disability knowledge worse, disability justice involves the lived experiences of disabled people, calling out collective care and access. These frameworks show how systems of care can also function as systems of confinement, surveillance, and exclusion.

I had as very negative reaction to the experiments at Willowbrook State School. Doctors infected children with disabilities with hepatitis on purpose just to study how the disease worked, which caused a lot of harm. Causing a lot of uproar now a days for the pure lack of ethics this experiment really brought to light. The children didn’t have the ability to understand or agree to the experiments, and their parents were often pressured into saying yes because they had no other options. This means the kids didn’t really have a choice, and their right to make decisions about their own bodies was taken away. The doctors were supposed to help and protect them, but instead they caused pain and suffering. It also wasn’t fair because the experiments targeted a group of people who were already treated badly by society and couldn’t speak up for themselves. Willowbrook experiments showed a serious lack of respect, care, and fairness for people with disabilities.

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Disability studies looks at disability in a different way than just a medical problem. Instead of seeing disability as something wrong with a person’s body or mind, it focuses on how society creates barriers that disable people. There are two main ideas in disability studies: the medical model and the social model. The medical model treats disability like a disease that needs to be fixed. The social model says disability happens because of things like inaccessible places, unfair attitudes, and lack of support. Disability studies is different from medicine because it focuses on the experiences and rights of disabled people, not just on fixing them. Disability justice is an activist movement that grew out of disability studies but goes deeper. It was started by queer, Black, Indigenous, and other marginalized disabled people who felt left out. Disability justice talks about how racism, capitalism, and sexism connect with ableism to make things harder for disabled people. It focuses on fighting for change and community support.

When it comes to care and confinement, bioethics, disability studies, and disability justice each bring important ideas. Bioethics asks if medical care is fair and ethical, but can miss disabled people’s experiences. One quote that explains this well comes from Geoffrey Reaume, who says critical disability studies “aims to reinterpret what it means to be considered disabled, bringing people who live this experience to the process as the primary agents of change in word and deed.” It’s about letting disabled people lead the conversation about their own lives. Disability studies shows how society uses institutions to control disabled people. Disability justice asks who really benefits from confinement and pushes for community-based care instead of locking people away. Together, they show that care isn’t always good care, especially when it controls or isolates people, and that we need better, fairer ways to support disabled people.

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The hepatitis experiments at Willowbrook State School showed the dark and unethical sides of the disturbing things they did to disabled children. By infecting children with intellectual disabilities, they went completely against the core bioethical principles: autonomy, beneficence, non-maleficence, and justice. Their autonomy was betrayed—not only could these children not give consent, but many couldn’t even communicate the pain and fear they were going through. The staff and doctors showed no real beneficence—they weren’t doing this to help the kids, only to serve their own research goals. They knowingly gave these children something dangerous and painful, and still acted like it was acceptable. That clearly goes against non-maleficence, which is about doing no harm. Instead, they caused serious harm on purpose. Finally, there was no sense of justice. These kids were supposed to be protected, but instead they were used because they were vulnerable and couldn’t fight back. It’s clear that the goal wasn’t care—it was control and exploitation. The whole situation was cruel, inhumane, and a perfect example of how wrong things can go when people in power ignore basic ethics.

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Reflection Prompt:

Reading about the Willowbrook State school was horrific. I actually did a little extra research on the topic to get a better understanding of all that happened there, and what I found was absolutely deplorable. First, before even delving into the unjust experiments that were run on these children, I would like to talk about the living conditions they were forced into. The Willowbrook school was built to only house 4,000 people, which realistically is already a lot of children to care for. Willowbrook housed 6,000, 2,000 children over full capacity. Senator Robert F. Kennedy, actually visited the state school and called it a “snake pit” as the living conditions were absolutely horrible. The children were forced to live in filth. Not only were they forced to live in such horrible conditions, they were subject to be treated as if they were lab rats. Due to the less than stellar living conditions, Hepatitis was already a major issue at Willowbrook, with newly admitted children normally contacting the virus within their first year of institutionalization. Dr. Saul Krugman thought that if they injected the live hepatitis virus in some of the students to study their symptoms as well as the immunity factor. The research conducted was absolutely not ethical, and the fact that even the parent permission forms with information that was significantly downplayed is even worse. Using the bioethical principles, let’s break this unethical mess down even further. Autonomy is my eyes is by far one of the most important principles especially in this case. The children had zero say so in being infected with the live virus and Hepatitis comes with a plethora of symptoms that are nothing to sneeze at. These symptoms can include intense abdominal pain, nausea and vomiting, joint pain, fever, etc. This leads into the next principle, Beneficence. Beneficence means keeping the patients welfare as a top priority and doing good by them. In this case they do the complete opposite. Just looking at the symptoms you can draw assumptions about how the children felt while being infected. This was on top of their already bad living conditions and now being infected with a virus that does far more harm than good. Non-maleficence is to avoid causing harm, as already stated, far more harm was caused. It isn’t even just physical harm that was caused, a lot of these infected students were integrated into school systems and they had to carry the stigma of the disease as well. This was even more harm to the children. Justice of course is all about fairness and nothing about this case was fair to the children.

Additional Resources:

https://disabilityjustice.org/the-closing-of-willowbrook/

https://www.qcc.cuny.edu/socialSciences/ppecorino/MEDICAL_ETHICS_TEXT/Chapter_7_Human_Experimentation/Case_Study_Willowbrook_Experiments.htm

https://research.uams.edu/irb/wp-content/uploads/sites/9/2023/01/Willowbrook-study-summary.pdf

Critical Analysis Prompt:

My working definition of Disability Studies is viewing disability in the lens of people with disabilities, as they decide their place in society, as well as how disability intersects with other aspects of life such as race, gender, class, and sexuality (Reaume 1248). The social model of disability is the interpretation of disability as a construct completely formed by external powers. This model provides us with two different schools of thought, impairment which is a restriction and disability which is a “difference promoted by society” (Reaume 1248). The medical model puts a focus on ‘fixing’ the person with a disability, and can obviously foster negative stereotypes.However, the discipline of disability studies is different than other fillers, because it is an ever evolving study where nothing is set in stone. There also isn’t one universal understanding. The most important part of disability studies is letting those with disabilities interpret “what out means wot be considered disabled” (Reaume 1249). Disability Justice also operates as working definition as it changes based on the context of the situation(Skin,Tooth, and Bone 14). A good definition of Disability Justice would be promoting the voices of people with disabilities to garner them a more safe and accessible world. I think the biggest similarity between disability studies and disability justice is that it is ever evolving and rests on the shoulders of people with disabilities to truly define what it means. It differs in the sense that one is more about learning and fostering research on disabilities: Disability Studies. The other, fosters community among those with disabilities to create a better world that is more understanding and more accessible: Disability Justice. Bioethics is important to use when exploring the complexities of care and confinement because of the unethical nature that has followed those with disabilities since forever. It’s only really now that we use the bioethical principles to discuss things that have happened in the past. Disability studies completely defines in it of itself what we are learning now and that is how people with disabilities have been treated by people who are able bodied or what is seen as normal. This ties directly into Disability justice which is all about exploring what is means to be disabled.

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New York State Association for Retarded Children v. Carey

A watershed case in the evolution of the legal rights of people with disabilities to live in dignity arose out of public awareness of the horrific conditions under which children and adults with disabilities were living at the Willowbrook State Developmental Center in New York. This case set important precedents for the humane and ethical treatment of people with developmental disabilities living in institutions. This, in turn, served as the impetus for accelerating the pace of community placements for people with developmental disabilities, expanding community services, increasing the quality and availability of day programs, and establishing the right of children with disabilities to a public education.

Inhumane Conditions at Willowbrook

Willowbrook was a complex of buildings on Staten Island housing children and adults with developmental disabilities. At its highest population, in 1969, 6,200 residents were living in buildings meant to house 4,000. Understaffed, overcrowded and underfunded, Willowbrook was little more than a "human warehouse," according to William Bronston, a physician at Willowbrook. The institution's overcrowding fostered abuse, dehumanization, and a public health crisis. Hepatitis was so rampant that several researchers took advantage of the situation to use residents as participants in a controversial medical study in which residents were intentionally exposed to the deadly virus, without their consent, in order to test the effectiveness of various vaccines.

In 1965, Senator Robert Kennedy paid an unannounced visit to Willowbrook. He found thousands of residents "living in filth and dirt, their clothing in rags, in rooms less comfortable and cheerful than the cages in which we put animals in a zoo." Kennedy went on to describe the institution as a "snake pit." The visit put conditions at Willowbrook into the national spotlight and the state of New York responded by developing a five-year improvement plan. However, after making minor adjustments, conditions at the institution quickly reverted to the inhumane conditions that had thrust it into public consciousness.

In 1972, ABC News investigative reporter Geraldo Rivera again drew national attention to Willowbrook with a television exposé that was watched by millions. Willowbrook: The Last Disgrace, exposed the institution's serious overcrowding, dehumanizing practices, dangerous conditions and regular abuse of residents. The public was again outraged. However, this time, the outrage served to spur parent advocacy groups to take action in federal court.

The Willowbrook Lawsuit

Following the Rivera exposé, parents of Willowbrook residents filed a class action suit in U.S. District Court for the Eastern District of New York on March 17, 1972. The lawsuit alleged that conditions at Willowbrook violated the constitutional rights of the residents. Parents outlined multiple violations, including:

Confining residents for indefinite periods;

Failing to release residents eligible for release;

Failing to conduct periodic evaluations of residents to assess progress and refine goals and programming;

Failing to provide habilitation for residents;

Not providing adequate educational programs, or services such as speech, occupational, or physical therapy;

Overcrowding;

Lack of privacy;

Failure to provide protection from theft of personal property, assault, or injury;

Inadequate clothing, meals, and facilities, including toilet facilities;

Confining residents to beds or chairs, or to solitude;

Lack of compensation for work performed;

Inadequate medical facilities; and

Understaffing and incompetence in professional staff.

The lawsuit sought immediate injunctive relief to improve conditions at Willowbrook, including hiring more staff, providing adequate medical care, prohibiting the use of seclusion and improper physical and chemical restraints, and providing adequate and appropriate clothing and physical conditions for residents. The plaintiffs alleged that the existing conditions violated the residents' constitutional right to treatment under the Due Process Clause of the Fourteenth Amendment, and that their denial of a public education violated the Equal Protection Clause of the Fourteenth Amendment.

In April 1973, U.S. District Court Judge Orrin G. Judd rejected the plaintiffs' arguments that the Due Process Clause guaranteed a right to treatment and that the denial of public education violated the Equal Protection Clause. However, he did find that the conditions in Willowbrook violated the constitutional right of persons living in state custodial institutions to be protected from harm. According to Judge Judd, the plaintiffs' constitutional right to protection from harm in a state institution meant that the residents of Willowbrook were "entitled to at least the same living conditions as prisoners." This right, he continued, "may rest on the Eight Amendment, the due process clause of the Fourteenth Amendment or the equal protection clause of the Fourteenth Amendment (based on irrational discrimination between prisoners and innocent mentally retarded persons)." Accordingly, Judge Judd granted much of the requested injunctive relief, including prohibiting the use of seclusions and restraints, increasing medical, therapeutic and recreational staffing, requiring maintenance, and requiring regular progress reports.

With this injunctive order in place, the case proceeded to trial on October 1, 1974, with the parties continuing negotiations for months afterwards. The case was settled on April 30, 1975, when Judge Judd signed the Willowbrook Consent Judgment: New York State Association For Retarded Children, Inc., et al., v. Hugh L. Carey, 393 F. Supp. 715 (1975).

The Willowbrook Consent Judgment

The Willowbrook Consent Judgment set forth guidelines and requirements for operating the institution and established new standards of care for all Willowbrook residents at the time of the settlement. These standards of care were "not optimal or ideal standards, nor... just custodial standards." They were based on the recognition that people with developmental disabilities, "regardless of the degree of handicapping conditions, are capable of physical, intellectual, emotional and social growth, and upon the further recognition that a certain level of affirmative intervention and programming is necessary if that capacity for growth and development is to be preserved, and regression prevented."

The Consent Judgment outlined specific procedures and instructions for treatment of residents, covering issues such as resident living, the environment, programming and evaluation, hiring of personnel, education, recreation, food and nutrition, dental and medical care, therapy services, use of restraints, conditions for residents to provide labor to the facility, and conditions for research and experimental treatment.

Significantly, the Consent Judgment also declared as the primary goal of the institution and the New York Department of Mental Hygiene to "ready each resident...for life in the community at large" and called for the placement of Willowbrook residents in less restrictive settings. The Consent Judgment set a goal of reducing the number of residents living at Willowbrook to no more than 250 by 1981 although this did not prove feasible.

Although the parties ended up in Court many more times in disputes over the ongoing implementation of the Consent Decree, it was, in a sense, fully implemented in 1987, when the Willowbrook State School and Hospital officially closed.

What Happened Next?

The political reaction to this case led to the enactment of legislation such as:

The Developmental Disabilities Assistance and Bill of Rights Act and CRIPA were the first federal civil rights laws protecting people with disabilities, leading to the enactment of the Americans with Disabilities Act (ADA).

Willowbrook Resources and References

Videos and Multimedia Resources

Articles and Other Secondary Sources

This article was originally printed in the December 2012 issue of The Federal Lawyer and is used with permission.

Opinions

District Court

Initial Injunctive Relief: New York State Association for Retarded Children v. Rockefeller, 357 F. Supp. 752 (1973)

Approval of Consent Decree: New York State Association for Retarded Children v. Carey, 393 F. Supp. 715 (1975)

Consent Decree

US Court of Appeals, Second Circuit decisions concerning implementation of Consent Decree:

References

1. The Minnesota Governor's Council on Developmental Disabilities, The ADA Legacy Project, Willowbrook Leads to New Protections of Rights, Moments in Disability History 9, 2013. Can be found at: ^http://mn.gov/mnddc/ada-legacy/ada-legacy-moment9.html

2. ^New York State Ass'n for Retarded Children, Inc. v. Rockefeller, 357 F. Supp. 752, 764 (1975).

3. ^New York State Association For Retarded Children, Inc., et al., v. Hugh L. Carey,. 393 F. Supp. 715 (1975) at ¶1.

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The Closing of Willowbrook - Disability Justice

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A watershed case in the evolution of the legal rights of people with disabilities to live in dignity arose out of public awareness of the horrific conditions under which children and adults with disabilities were living at the Willowbrook State Developmental Center in New York.

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My initial reaction was I was shocked and disturbed that this experimentation was allowed to happen, especially on vulnerable children. It is hard to comprehend how anyone could justify exposing these children to harm. Knowing that they could not fully understand what was happening or give meaningful consent. The research conducted to develop a hepatitis vaccine was not ethical. The children were vulnerable and unable to understand what was happening and the consequences. Rather than the researchers prioritizing the children’s safety and wellbeing, they were treated as subjects. “In health care decisions, our respect for the autonomy of the patient would, in common parlance, imply that the patient has the capacity to act intentionally, with understanding, and without controlling influences that would mitigate against a free and voluntary act,” (McCormick, 2018). According to the bioethical principle, autonomy, the researchers violated this principle. The children’s rights, autonomy, and dignity were ignored in the medical research, resulting in harmful conditions for the children. The principle of nonmaleficence, “requires of us that we not intentionally create a harm or injury to the patient, either through acts of commission or omission,” (McCormick, 2018) was also violated in this study. This was done so by the researchers infecting the children with the hepatitis virus. Intentionally inflicting harm onto the patients, which is unethical.

Disability studies is a field of study that examines how people define and treat disabilities to understand from the perspectives of people who experience it. The medical model is the dominant model and understanding of disabilities. This model views disability as the problem or abnormality within a person. In contrast, the social model views disability as not the problem with a person. Instead, it views society as the problem. It states that people are disabled by society through prejudice, stigma, discrimination, and building structures. The discipline of disability studies approaches disability differently than other fields by focusing on society and culture. While fields like medicine see the disability as the problem to be treated. The definition of disability justice is a framework and movement that focuses on disabled people deserving fairness and inclusion. “What follows is a working draft definition of disability justice. This is a living document that grows and changes along with our emerging movement,” (Sins Invalid, 2019, p.10). Disability justice’s main goal is fairness and inclusion for disabled people, but the definition can change as the movement grows. Disability justice and disability studies are connected because both focus on understanding disability beyond the medical world. They differ by the way they focus on the understanding of disabilities. Disability studies study and analyzes, but disability justice acts to make real world changes.

Bioethics, disability studies, and disability justice frameworks are useful in exploring the complexities of care and confinement. They all offer different ways to understand care and confinement. Bioethics focuses on the ethical guidelines and respecting the individuals. Then disability studies focuses on social barriers that disable people. Finally, disability justice advocates for disabled people equality.

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At the Wilowbrook State School, disabled children were used in a study in hopes of finding a cure for hepatitis. Although this idea seems straight forward, there are various ethical principles that come into play while understanding if the research was ethical or not. Although I believe that conducting research on patients that are currently sick is beneficial, I argue that the experimentation conducted on the disabled children at the Willowbrook State School was unethical. The paper A Framework for Analyzing Ethics Cases states that under the ethical principle of beneficence, the research could “enhance public health through vaccine development” (DuBois 2008), which is true. Because I have a science background, I understand that while attempting to treat or cure a disease, working with actively sick patients can be very prominent. On the other hand, looking at the principle of autonomy, the children in the research are not able to voice their opinion if they want to be a part of the research or not. The paper also states that the parents “may have been unduly influenced” (DuBois 2008) to agree for their children to be a part of the study. If research should be conducted, it should not be conducted on children that has another person consenting to the research for them. The idea of using children for a study is unethical. Not only were children used for the study, but the children were also disabled. The ethical principle of justice explains that the disabled children are institutionalized and that is why they are considered for the study (DuBois 2008). If the children were not disabled and institutionalized, they would not have been chosen for the study and in hindsight, they may have not been infected with the disease.

Disability studies are the understanding of disabilities though social, economic, historical, and cultural views. Within disability studies, there are two models that propose different approaches to disability. The medical model of disability is the idea of something that is abnormal or deficient within a person mind or body. This model views a disability as a problem that needs to be treated or cured. The social model of disability is the idea that the social construct, cultural beliefs, and discrimination is what disabled someone. In the video “My Body Dosen’t Opress Me, Society Does,” Stacey Milbern and Patty Berne discuss the social model with each other. They feel that society disables them because not every building has doors that can open with a push of a button or that some workplaces do not have an accessible work area for people in wheelchairs. They feel that society fails them rather than their own bodies. Traditional studies see disabled people as ‘not normal’ whereas disability studies see disabled people apart of human diversity. Diversity studies are including disabled people rather than excluding them. Similarly, disability justice focuses on disabled people to voice their experiences and fight against the prejudice against them. The social model and disability justice both contradict the medical model and wants society to view a disability as part of human diversity.

Bioethics, disability studies, and disability justice could be useful while studying care and confinement because there are many people who are incarcerated that are disabled. In the paper “Understanding critical disability studies,” the authors grandfather had been institutionalized in a psychiatric ward because he was seen as a neglected outcast rather than a normal citizen (Reaume 2014). Understanding the principles of bioethics, the framework of disability studies, and the goal of disability justice is important in knowing how to care for incarcerated people. We can also keep people out of institutions if they are integrated and accepted by society.

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I felt sick reading about how they gave disabled children hepatitis for research . I felt even more sick when I found out how they did it and how long they were doing it. I do not think the studies were ethical due to various reasons. Children were being harmed on purpose, the researchers knew that it would cause the children pain and make them sick. When doing a study or research you should never harm people especially children when doing a research on diseases. With the children having mental disabilities, they weren't fully aware of what was happening to them and what the researches were doing to them nor understand what was happening. The researchers could have easily found another way to practice their research but chose to take advantage of disabled children because to them it seemed like the easiest way to carry out their research. The researchers treated the children like subjects instead of treating with the help and care they needed to live an as close to normal lifestyle as they could. At the end of the day, even if the studies helped research and progressed human studies and life, the practices are not justified and are deem unethical because they were children being taken advantage of and were being hurt in the process.

Disability studies is the study of how society treats people with disabilities and what factors play into it. Disability studies approach disability differently by focusing more on society rather than the disabled. For example, a doctor would say a child isn't paying attention in class while someone in disability studies would why is the child getting the accommodations he may need to pay more attention in class. Disability studies tend to aim for social change and to accommodate the disabled and for them to have better treatment. Disability justice is more about making sure everyone regardless of ability gets the same treatment, opportunities, and rights. Disability studies and disability justice connect with each other because they are both here for the betterment of the disabled with the intention of harming them. Another thing those two have in common is that both tend to challenge what a disabled person can and cannot do, meaning they fight the fact how society say normal people can do anything while disabled people are less than that. Bioethics, disability justice and disability studies can be useful by exploring care and confinement by deepening your knowledge on how certain people with disa -bilities  are being treated when they are put in certain environments and how to better meet their accommodations and needs without harming them.

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Reflection/Opinion Prompt:

What were your reactions when reading about the experimentation conducted on disabled children at Willowbrook State School?

Was the research conducted to develop a hepatitis vaccine ethical? Why or why not? Use the bioethical principles--autonomy, beneficence, non-maleficence, and justice--to justify your response.

Critical Analysis Prompt:

Define disability studies—including an overview of the medical and social models. How is the discipline of disability studies approaching disability differently than other fields?

Then, define disability justice. How does this activist movement connect to disability studies? How does it differ?

Lastly, discuss how bioethics, disability studies, and disability justice frameworks might be useful in exploring the complexities of care and confinement.