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.

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.

                  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.

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.

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.

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.

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.

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.

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.

             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.

 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.

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.

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.