This question is timely, as I actually touched on this subject with brain injury advocate Cheryl Green when she recently interviewed me.
I talked in my last summer blog hop post about my friendship with Ivy, an intellectually disabled woman that I met through a befriending program at an agency when I was fifteen years old. When I had my stroke, Ivy and I had been friends for seven years. I’d seen how the agency with which she was was involved had made it a goal, in its supports for her, to ensure that she lived as independently as possible and that she enjoyed as much inclusion in the community in the possible, according to her desires and goals.
I could see from the time that I spent with Ivy that she had an active life in the community. People knew who she was and said hello to her on the street. She had work placements and did activities that she enjoyed. She had her own apartment and friends and seemed to genuinely enjoy her life…she still does.
My disabilities are very different than Ivy’s. But seeing that she had a full life that she enjoyed helped me to go I into rehab after my stroke knowing that even if I remained disabled, life didn’t have to be sitting in a room. I knew that even if I required support coming out of rehab, there would still be a life out there for me to live if I wanted it. I was very grateful to have this reinforced constantly in the first rehabilitation hospital by a young nurse, just a couple of years older than me, who kind of took me under her her wing that summer and got me out on some evenings to movies, dinners with her friends and family, and even a trip to a casino. Everyone involved treated me like just another person along on the trip, like it was no big deal that I needed assistance to transfer in and out of vehicles and to use the stairs when there was no elevator and that I was a bit paranoid about having seizures.
My family has also had a terrific, “Nothing to stop you from trying…what can we do to help?” attitude (including my brother-in-law, who came into the family when all of this was just starting, and didn’t miss a step) right from the beginning. My sister was with me during my intake interview at the second rehabilitation centre, when one of the therapists said, “Did you leave the other hospital at all?”
Confused by the question, I said, “Well, yeah…I went out lots of times. They liked me to go home every weekend, and one of the nurses used to take me to the movies and stuff.”
My sister might not remember this, but she was annoyed. “What kind of a question was that?” she said to me later. “Of course you went out! Why wouldn’t you?”
I know now that not everyone in stroke rehab is lucky enough to have people willing to do those sort of outings with them It was far above and beyond the call of duty for my nurse friend to do so. Thanks to my father’s experience with a family friend with multiple sclerosis who used a wheelchair and a scooter, and to my sister’s volunteer and employment experience with physically disabled people, I don’t think that the idea of me going on family outings in my wheelchair seemed especially daunting to them. Even friends that visited me in the hospitals or on my weekends at home didn’t seem at all nervous when I’d say, “Let’s go out let’s go out out OUT!!!” Once I could manage my own transfers, I was fine.
But not everyone is that comfortable with disabled people. It could have gone the other way.
Like I said, I was lucky.
Getting It Down on Paper (Or a Computer Screen)
Writing also helped me to come to terms with becoming disabled.
When I look back on my first writings about becoming disabled. one of the themes that came up a great deal was mourning. That doesn’t shock me, but today it fascinates me. I don’t have an answer to this…but I wonder if the mourning process that people that acquire disabilities go through, and that parents who learn that a child is going to be disabled go through, is due at least in part to the fact that society drills it into us that the social messaging around disability is that it’s tragic and that it inherently involves loss. If the messaging was different, would our reactions be different?
But those are relatively recent thoughts. Initially, I was doing a pretty good job at staying positive, and I understood that my life wasn’t over because I was disabled…but at the same time, I had already been feeling a little “behind” where I’d figured I’d be at that point in my life, and I needed to deal with some realities that were difficult to understand and that sometimes seemed really overwhelming. I was monitored by a psychiatrist for a long time, and there were periods where I was very, very sad, to the point where people around me were very concerned. I did a bunch of thinking and talking that helped through it, and eventually I wrote about it.
And then, a couple of years later, I started this blog, and I (obviously) did a lot more writing. Many of my views on disability had changed when I started writing here. Many of them continued to change as I continued to write here and to interact with people with viewpoints to which I’d not been exposed before.
I think that there was a time when my disabilities made me feel powerless. It was around the time that I first started writing the book of personal essays that I published (now out of print, but I’m thinking about an ebook) that I was starting to take some power back. By the time I started writing here, I was ready to claim it.
I try to every day, even on the days that I don’t feel all that powerful. But those days are further and farther between now.
I’m disabled, and that’s fine.