During our Chicago visit, we had the opportunity to interview employees of access living. One is Scott, who is an amazing advocate for people with disabilities, especially in terms of securing them supports so that they can remain in their own home independently if they please. Scott is very motivated by his anger about the state of disability services currently.
Scott is part of an army family and is a veteran himself. He has two siblings with some sort of disability. His brother was diagnosed with cerebral palsy at age 2 and his sister was diagnosed with dyslexia.
We always ask sibs if they think that their experience affected them at all academically. That question is based in our knowledge that many sibs become high achievers, either from a place of wanting to not take for granted their intellectual capabilities or a desire to be “the perfect child” for their parents. Scott quickly let us know that he did not fit the mold, telling us that he “passed high school by the skin of his teeth”. However, he reminded us that it’s important to not only think about maturity and growth in the academic arena. See below:
Anger is an emotion that comes up pretty frequently in our conversations with sibs. Normally this anger has something to do with either the behaviors that their sibling displays or their feelings of resentment that they didn’t get more time as a child. Scott’s anger was a different form all together, and was aimed not inside the family but outside its realm.
Scott used this phrase again and again, the idea that our society was wrong, and oppressive, and in many circumstances even awful. Here, he describes the problem with the diagnosis process for families, and the psychological harm that it could potentially cause because of the specific and recommended paradigm for coping.
Many of our Chicago sibs spoke of the dire lack of services in Illinois. Here, Scott makes the perfect metaphor of the level of struggle to secure the necessary supports for individuals with disabilities.
This made the perfect segue into Scott’s professional life. Scott works for Access Living, an organization that helps provide the appropriate supports so that individuals with disabilities can continue living independently and not be moved into a nursing home or more institutionalized setting. Simultaneously, Scott volunteers with ADAPT — taken from ADAPT’s website — “a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom.” Listen to Scott describe ADAPT’s past and current work:
Scott’s story eventually took a tragic turn. His brother, while living independently, tragically died after attempting to clean up an accident he had made. Scott has so much justified anger about this incident. For months, he and his mother had searched for someone to come in to help his brother so that he wouldn’t have these long periods alone. He details his struggle here in these next two clips:
I’d like to end his story with his description of his brother, simultaneously beautiful and so revealing about the importance of prioritizing independence for those with disabilities.