What is “ableism”? It’s about not being able to go to school because no one would take her to the bathroom when she needed it. It’s about having a mother, on whom she was totally dependent, who called her a disgrace and worse. It’s about not being able to work, though she was capable of doing several kinds of jobs, because she would lose the attendant aid that she had to have to stay alive.

“Ableism” is “about using people’s differences to create power imbalances which served those who created them,” a.k.a. “disability oppression.” It’s about seeing the “disabled” as more different than the “temporarily able-bodied”. They both have the same dreams and desires; they both have sexual feelings; they value a spiritual life. It’s about being unfairly taken advantage of in situations that she couldn’t control.

So, she decided to take some control. She organized groups where the variably-abled could discuss how they were treated and how they felt about it. She called county, state, and national leaders and university presidents to publicize their plight and demand that something be done about it. She got interviews with newspapers and radio and television stations to broaden the knowledge of the public. She went to music fests and political rallies and anything else she thought could make a difference in people’s lives. She lectured to temporarily-abled groups, helping them to understand what it was like to be disabled and be treated like a second-class citizen.

In the meantime, she was trying to get on with her own life. She finally managed to get her own apartment and ease the love-hate relationship she and her mother had. However, it was extremely difficult for her to keep aides–some left in the middle of the night, leaving her in a potentially deadly position. She went through hundreds. Occasionally, she found a keeper, but even they did not stay forever. It was a constant hassle for her and caused considerable stress, which impacted on her physical problems. She caught respiratory ailments very easily. In her twenties, after achieving more than anyone had thought possible (including graduate school), she started getting worse. She found out that her nerves were disintegrating and she began losing what little movement she had had. She could no longer feed herself or type or use a computer or draw, the last two had been able to give her great pleasure and extend her reach to the world. She could no longer give a lover physical pleasure. At the close of the book, she could still talk and blow. She was able to get a computer hookup that would operate on the basis of blows.

She really started developing as a person at her sixteenth birthday. She made a deal with God that if she hadn’t walked by then, that she really couldn’t. You see, she had grown up hearing only (from doctors, physical therapists and her family) that she could walk if she really wanted to and she believed them. Except for the fact that no matter how hard she tried, how much she suffered through leg exercises and painful leg braces, she could not walk. So the fault must be her own. When she turned sixteen, she realized she would never walk nor do a number of other things. That’s when she began to develop self-confidence at things she could do. She was very intelligent; she liked to talk and was not intimidated by authority figures; she liked to organize things.

She finally badgered the local high school into taking her rather than continue to have a teacher come to her home; many of them assumed she wouldn’t live long, so didn’t teach her much. She was hungry for learning–anything! Her price to pay for going to high school was that she had to severely limit her fluid intake so that she wouldn’t have to use the bathroom during school hours. That meant, including travel time, about seven hours a day. Also, she only had a manual wheelchair, which she couldn’t propel, so she would have to ask someone at every class to take her to the next class and to her locker. The price was worth it to her. She excelled in every subject, especially the sciences–disection and all. In college, she wanted to major in the sciences, but the lab tables were too high and no one would make any accommodation. So she switched to English.

This is not a political treatise nor a morality play; it’s a “this is who I am” story well worth reading by everyone. I guarantee you will not feel the same after you read it as before.

Categories: Memoirs, ClientReviews