A friend of mine shared the link below on Facebook last month. I couldn’t get the article, which was published in the New York Times in 2003, out of my mind. It made me think of many friends who have significant disabilities working and living in our community. These are very accomplished people making a tremendous difference in their communities. They also have significant challenges in navigating this world built for those who can talk, listen, see and walk without any encumbrances. I can’t imagine what it is like to live a life dependent to some extent upon others.

I have no personal frame of reference other than to be associated with these wonderfully fine and gifted people like Joelle Bruner or Don Hayden or Luther Smith who I have gotten to know very closely. I have not experienced any hardship (for which I am thankful) getting around and connecting with others on this earth. I have not had any problem finding employment or riding public transportation or any activities most of us “abled bodied” take for granted.

The article struck me because I thought about the stereotyping of individuals with disabilities and the realities of institutionalization.

I have not revealed this to but a few and most certainly not published this in a blog for all to read but back before I started my career in community rehabilitation programs I was offered a job at the state institution located in Buckley. The first step in the hiring process was orientation which started with a tour of the facility. So I arrived at the institution early that morning eager to begin and was introduced to a pleasant woman who guided me through Fir Hall. She explained that most people start at Fir Hall. It was also the facility where the most severely disabled individuals were housed. I must admit I was immediately taken aback when we arrived at the hall because it looked like a prison. It was an institutional pale green concrete building with grating over the windows. When we entered the interior doors looked foreboding – very rugged and secured with a lock. She explained this was to keep some of the people who had the desire to flee from wandering off. She showed me the office – non-descript institutional metal desks. Then she took me into the day room.

I was shocked at the environment and the condition of the persons present. There were about 15 people in this room and all of them were performing some type of self-stimulation. The smell of urine was strong. The only aide was sitting on a desk watching the lone television which was housed behind a metal screen. The aide was oblivious to what was happening and clearly nonplussed by us walking into the room since he didn’t stir. It was obvious this person had no interest whatsoever in the persons residing there. We went through another locked door into the dormitory – no one was allowed here during the day I was told unless they were sick. My guide also noted that no cigarette butts could be left around because some residents would eat them. I am sure I asked questions to act interested in the job and gain information but left with a heavy heart knowing I didn’t want to work here. To be locked up all day even if I had a key. I left and to be totally honest was very emotional about the conditions I had just witnessed and deplorable condition and treatment of the residents. I had no idea such a place existed. There was no way I could return.

When I got home I called the Human Resource department and explained I would not be returning, thanked them for the job offer, and suggested they should really consider someone else. The HR person thanked me and I said “Why are you thanking me, I am letting you down because I said I wanted the job and now I can’t accept it.” The HR Specialist told me I was one of the few that actually called back to refuse the job, most she said they simple never see – they just don’t show up.

So I have been to the “Gulag” and have greeted people who have come back to the community from the institution. I can’t imagine being a person who lives on the edge of congregate care because the system prefers it. The richest nation in the world and we can’t seem to muster our collective courage to change – to move away from large institutions in our state. Why must we obtain a waiver to fund services in the community rather than the institution? Shouldn’t it be the other way around? I cry out for those in the Disability Gulag.

http://www.nytimes.com/2003/11/23/magazine/the-disability-gulag.html?pagewanted=all&src=pm