One of the worst things that has happened to me during my nineteen year incarceration in an institution is basically having my confidence stripped away from me. Very few of the staff members support the idea of someone like myself living outside of the hospital setting. In fact, I have actually had a few people laugh at the idea, which practically felt like a physical slap in the face. I know I shouldn't let that affect me, but it did knock my confidence down several notches.
Sadly, institutional bias is far more rampant than a lot of people believe. I know for a fact that there is a lot of ignorance regarding disabled people living independently. You wouldn't believe the number of people that I have encountered that don't think a person with a severe disability has the potential or capacity to live and thrive outside of an institution. It's exactly this kind of attitude that keeps people like myself from pursuing a life of freedom.
Back in 2003, I was extremely close to leaving the hospital and moving into the community. I ended up backing out because it didn't feel like I was going to be safe. The agency I was working with just didn't seem to comprehend the kind of living situation that someone who is ventilator dependent requires. However, some of the blame rests with myself because I was too timid to speak up and make a real effort to explain what I wanted and needed. Another thing that wasn't very helpful, was the fact that my social worker was constantly pointing out what could go wrong. Obviously, being the one on the ventilator I'm acutely aware of what could go wrong and I would take steps to minimize the possibility of something going wrong.
Now I'm at the point where I really want to make an effort to get out of the hospital, but it's not easy when you don't have the support of your own family and the people who care for you on a daily basis. Don't get me wrong, I do have the support of my fellow DMD Pioneers and others in the Disabled Community and I really do appreciate it. I just need to stop being scared of change and forge ahead regardless of the challenges I will certainly face.
I also need to give my local ILC a serious kick in the ass because for over two years I have been working with them and getting absolutely nowhere. Every time I feel I'm ready to take the next step, something happens within this ILC that completely sidetracks me. First, the guy I was working with nearly two years ago ended up having serious health problems and had to quit and then the ILC closes and goes through some sort of restructuring. The last time that I heard from them was in July. The Director of Services told me that they were still interested in working with me and that there were going to set up a time to meet with me. I know that I'm responsible to follow up on such things, but I assumed that they would start the ball rolling. Unfortunately, I haven't heard back from them even after I sent them an e-mail about two weeks ago. I'm not sure if I should send them another e-mail and give them a chance to respond or should I tell them to close my case and work with the other ILC that covers my area. All I know is that the longer I remain idle, the more hesitant and nervous I'm going to be.
5 days ago