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Amplifying the Voices of Young People with Disabilities

Reflective Narrative and Capstone Project by

Marie Canty, UMass Amherst Class of 2023

Growing up, I noticed that the Disability Rights Movement wasn’t taught about in the classroom, I had only ever heard of it once I got to college. Educating myself on the movement, I learned about self-advocates like Judy Heumann and Justin Dart Jr. who are disabled activists who fought for the rights of the entire disability community. I quickly learned that the best way to learn about disabilities was from the people who were affected and that’s when I drew inspiration from the term used during the disability rights movement, “nothing about us, without us”. However, learning about disability rights I found that there was a lack of neurodiverse representation within self-advocacy. When I found out that BHMA ran a self-advocacy program, I knew I wanted to observe and learn from the students at BHMA about their disabilities and their education. As a neurotypical, able-bodied individual, I wanted to learn more about what I could do better and be more aware of through the lens of someone with a disability. I truly learned so much from the students at BHMA about how their disabilities affect them and what I could do better as an ally. In a true act of self-advocacy, I gave the students of BHMA the opportunity to tell me what they wanted to learn more about in their self-advocacy group. The students said they wanted to learn more about the disability rights movement and being an disabled activist, they wanted to do more role playing to learn how to deal with certain situations, and they wanted to learn more sign language in order to learn an alternative way of communication. I created lesson plans and resource guides for each one of these topics and this way, the students at BHMA can not only learn more about what they want to learn but also have the power to choose what they learn within their own education.

Description of Project from Capstone:

Every week, the self-advocacy group met at BHMA with their Assistant Director of Residential Services, Nicole Hean, who would also be my supervisor throughout this project. Every week, I would sit and observe their self-advocacy group as they were taught different skills. As a neurotypical, able-bodied individual, I am choosing to educate myself about disabilities from disabled self-advocates. During a class I took for DDHS about Autism, we learned that hearing from self-advocates could be one of the most impactful ways to learn about disabilities. I had never thought about this before but as soon as it was said, it seemed quite obvious. Why would we learn about disabilities from able-bodied individuals? My TA for this class was autistic and hearing from her every class about her lived experiences and what she would like to see from able-bodied individuals made the class that much more meaningful.

The first self-advocacy meeting that I attended was on 2/21 and Nicole started off teaching about what self-advocacy is. My observations included learning about how the students viewed self-advocacy mostly in their school and personal lives. A lot of students defined self-advocacy as standing up for your rights and needs. At the end of the meeting, the students went around and gave examples of when they advocated for themselves whether that be in their personal lives, in the classroom, or in the community.

The following self-advocacy meeting was about learning about one’s own disability and the identifying features that define one’s disability. One of the students identified that they had Down Syndrome and when asked what that meant to them, they explained that, “people with Down Syndrome grow up in different shapes and sizes and with different physical characteristics”. Another student identified that they had Williams Syndrome. They said that some of the characteristics included hyperglycemia, hyperacusis, and heart disease, as well as sensory issues and anxiety. This student researched Williams Syndrome when they were younger and it helped them to understand themselves better. They recognize that they “can’t process simple things as well as other people can”. One student shared that they didn’t get their autism diagnosis until they were 15 years old. A doctor once said to them that having autism means that they won’t understand jokes very well. Another student with autism expressed that they were diagnosed at 3.5 years old. They explained how it was very difficult to learn about the world around them but they seeked comfort in Dr. Seuss books and computer games. They also recognize that they have sensory issues, especially with crying children and fire drills.

The next self-advocacy meeting that I observed was about consent and relationships. One of the first things that Nicole taught about was the circle theory of relationships. At BHMA, students are learning about the significance and boundaries of different types of relationships. The smallest circle represents oneself and what someone does in a private setting by themselves. The next circle is your next closest circle which includes family members and significant others. The next closest circle includes close friends and BHMA staff. The next circle is the acquaintance circle which is someone new that you meet, pass by, or someone you know that you don’t talk to on a regular basis. The next circle is the “wave space” circle which includes community helpers like paramedics, police, bank tellers, school bus drivers, etc. Finally, the furthest circle is the stranger circle. Next, the group talked about friendships and how friendships can blossom into romantic relationships but only if consent is granted in both parties. When Nicole asked the group what consent was, one of the students said, “when only your parents decide”. Nicole then went directly into talking about how it is everyone’s human right to make decisions for themselves and that staff, family, and friends can provide guidance but cannot tell someone what they can and cannot do. Some of the other observations that I made during this session was that a lot of the students wanted to eventually move out of BHMA, live on their own, and eventually get married and have children. Nicole emphasized that the goal of residential life at BHMA is to teach and give the skills to have a successful life, hopefully outside of BHMA. Overall, the students really enjoyed this conversation and definitely wanted to learn more about it in the future.

As the students at BHMA have a very wide spectrum of disabilities and needs, some of the previous self-advocacy lessons were not accessible to all of the students. Taking this into consideration, Nicole developed a Bingo self-advocacy game for the following week’s meeting. This activity allowed for more non-verbal communication and less understanding of one’s own disabilities. I think it would be really beneficial to create self-advocacy activities that reach a larger audience of needs like this one.

The next self advocacy activity was another very accessible activity for the entirety of the group. A self-awareness worksheet by Understood for All, Inc was passed out by Nicole with questions on it that reflected each person’s strengths and weaknesses with having a disability. The first question was, “what are three of your greatest strengths?” Some of the answers included money management, cooking, dancing, piano, drums, swimming, being punctual, advocating for who I choose to sit with, photography, singing, getting to know people, having a good sense of humor, playing video games, being a good friend, and sticking up for myself. Another question was “what two things seem harder for you than for other kids your age without a disability?” Some of the answers included: walking, riding a bike, putting laundry away, getting used to new places, learning new skills, listening, sports, being on time, waking up early, waiting, dealing with loud noises, being aware of my surroundings, and requiring assistance. The next question was “what are two of your favorite things to do?” Some of those answers included: watching TV, going to six flags, calling my mom, being with my friends, playing the piano, walking outside, meditation, sleeping, number painting, messaging friends, and listening to the radio. The next question was “what are two of your least favorite things to do?” Some of the student’s responses were: going to crowded places, eating salad, having to wait, going to the dentist, folding laundry, going to doctors appointments, being in a big crowd, going for long rides in the car, getting up early, having to deal with drama with peers, cleaning my room, long phone calls, going to the movies and dealing with conflicts. The final question was “who do you turn to for help with things that are hard for you?” The students responded with people like family members, staff at BHMA, advisors, clinicians and friends. Overall, this worksheet was a good reflection of what skills the student’s had learned in their self-advocacy class so far.

The final self-advocacy activity that I observed was focused on recognizing one’s own disabilities and stressors within the community based on that disability. Some of the disabilities that the students at BHMA have are autism, Down Syndrome, Williams Syndrome, blindness, ataxia, etc. Some of the students identified with their disabilities and some of the students didn’t know that they had a disability. Some students also recognized that they had a diagnosis but didn’t consider it a disability. The students then went around and shared some stressors while out in the community that occur for them because of their disabilities. One common stressor was when a child is crying out in the community. The group suggested some strategies to help each other during a situation like this which included asking for some help, stepping out of the situation, and possibly carrying around a fidget toy. Another stressor that was identified was that the classroom setting is too loud. A possible solution to that issue was asking to take space for yourself and your needs. At the end of the discussion, the students were asked their thoughts on advocacy. One student said, “sometimes it feels easy and sometimes it doesn’t feel easy at all. It also depends on the people who are there because sometimes it's easier to ask for help from some people than others”.

At the very end of my time observing the self-advocacy group, I decided to have conversations with some of the students about how they felt about being disabled in an ableist world and other things that they want to learn in the self-advocacy group. One student that I talked to explained some good things about their disability like the fact that they can be really close to their friends and family as well as hard things about having a disability like wanting to be alone a lot of the time. When I asked what people without a disability can do to help, they responded by saying that people could be more patient with them and give them a chance to process their thoughts and emotions. I also asked them what struggles they have when they are out in the community. This student said that they stare at people a lot because they try to remember that people are kind and not mean. They said that memories from when they were younger triggered this thought because kids at school would tell them that they were a “weirdo” and wouldn’t hang out with them. When I asked what they wished those kids did when they were younger, the student said that they wished they would have hung out with them and talked with them just like anyone else. This student explained that a lot of their anger and anxiety comes from these experiences as a kid. I asked this student what has been helpful about the self-advocacy group and they said that it’s helpful knowing that some people also struggle with social anxiety and social cues. This student also said that they would like to learn more about disability rights and how they can be a self-advocate in more of a political setting as well as having the great idea to role play different situations to learn strategies that could help them in the community. They also said that they would like to learn more about the disability rights movement and how to be an advocate as someone who’s disabled. I ended our conversation with an important question; I asked if they thought the people who are neurotypical should learn from people who have disabilities and this student yes, and that neurotypical people should be more patient and be more aware of how they act.

The other student that I had a conversation with told me that they weren’t properly diagnosed until the age of 15 years old. This person was faced with multiple misdiagnoses, thus not receiving the right course of care or education growing up. When I asked them about what they struggle with when they're out in the community due to their disability, the student said they struggled with huge crowds of people. They also said that they have had a really hard time accepting help from other people and connecting with other people. When I asked this student if the self-advocacy class was helpful, they said that it can be helpful for some people but “everybody’s brains are different”. This student also expressed that “in the olden days, people thought that people like me were just crazy”. When I asked if there was anything else that they would like to learn about in the self-advocacy class, they said, “yes, what I feel like I should be doing is telling people how people with disabilities feel, whether that be scared, upset, nervous, really depressed or anything in case they don’t have a voice to speak out because we are being targeted and not being treated well in the world.” This student also expressed that they would like to learn more about communication and sign language for people with disabilities. Based on these conversations, I decided that I would create three lesson plans for the BHMA self-advocacy group: a lesson on the disability rights movement and how to be a disabled activist, a lesson on role playing in different situations in the community, and a lesson on sign language.

Post Project Reflection:

After graduation, I will be working at Boston Children’s Hospital as a Clinical Research Assistant in the Down Syndrome Clinic. I truly believe that this project will help me to be a better researcher and advocate as I will be more conscious and empathetic with the patients. Thank you to the students at BHMA for teaching me to be a better person and to be constantly aware of my privilege.


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