I took part in a panel discussion about the importance of the Americans with Disabilities Act. It was my employer’s late commemoration of the 33rd anniversary of the signing of the ADA. I shared the sad fact that civil rights laws cannot regulate attitudes, and to me, that is the biggest barrier that we face. Still. The panel shared stories about their daily challenges when interacting with the community. I am confused about how complicated it is to live our lives.
This is one theme in my book. I think readers might question how I can say disability is just a part of me when it’s all I talk about in Persistence, coming this summer. So in advance, I will say that the rest of the world makes having a disability a big deal, and I have taken the responsibility to educate others my whole life. The memoir is a way to claim it as a part of my identity. I am proud that I came through all the turmoil and still forged ahead to a satisfying life. I don’t apologize for or hide my identity. In fact, claiming my disability puts it in its proper place.
The book is part of my legacy. We have to tell our stories. Someday, I hope our history is added to school curriculum. We need to celebrate that we got more freedom and integration. The disabled have unique circumstances that need accommodations. We have more expensive lives with environmental barriers every day, but we want the same things as everyone else. Belonging and purpose. The social problem is ignorance and discomfort. Many just ignore our presence. We have used the ADA to demand recognition of our needs and basic respect. How are we unequal when we are human, like everyone else?
I work on community-based services for persons with intellectual disabilities and autism. It is all part of deinstitutionalization, or preventing placement before it happens. Deinstitutionalizing is more humane and less expensive. We run into neighbors who don’t want group homes, and providers who refuse to serve individuals with challenging behaviors. People learn challenging behaviors as a way of communicating and demanding attention, even if it is negative attention. Only accepting the “easy” ones is another form of attitudinal barrier. When a person is freed, they become more relaxed and happier. I believe that if we try to listen, we will hear what people are trying to say. Asking the person what is important to them is critical. It shows respect. Staff can model different ways of communication. Removing self-injurious behavior does not change the essence of the individual. It allows the person to shine through and achieve greater freedom.
The disabled community, however, cannot be the only ones who change behavior. The community must be more open and willing to listen. In the meantime, we will continue to push for our freedom. #gettingtotherealme #civilrights #integration #disability