A Letter from Someone You've Probably Never Met
Susan Trudeau is a 74-year-old divorcee with cerebral palsy who is now homebound, but she clings to her independence and seeks new ways to break down barriers and share the gifts she has been given. This letter is an effort on that front.
74 years ago, I was fighting for my life—I was blue, anoxic, and unable to suckle, having been born over two months premature and weighing two pounds.
The world was at war, after the attack on Pearl Harbor only five days before. I'll never know whether the panic of those days sent my mother into early labor or indirectly "caused" my resultant cerebral palsy, but if I were given the power to go back and change any of it, I wouldn't. I firmly believe that things happen as they are meant to. As bad as war is, and as hard a struggle as premature birth is, individuals who survive adversity often emerge stronger and ultimately wiser than they would have with an easy existence.
My first few years were filled with talk of the war, which I was very aware of—partly due to my confusion as a German-American child who bonded with the Jewish refugee children with whom I played, and partly because the pain and failings of my own uncooperative, strangely behaving body made me hyper-aware of the with pain and suffering and gloomy mood of those war years. But it all strengthened me. I grew. And I survived because of when and how I came into the world, not in spite of it.
I first got involved with the Disability Rights movement in the late 1970s. It was the first cause I had taken on that had a direct bearing on my own life, and in the beginning, it was very exciting. But before long, it became apparent that there was a big difference between this struggle for liberation and various others going on at the same time: Our movement was not run by ourselves, but by able-bodied professionals working in the "field" of disability. It would be like having the feminist movement run by men, or the Civil Rights movement run by whites. This seemed normal to me because, for my entire life up to that point, just caring for myself took most of my time and attention. It still does. How were people like me supposed to have time to run a movement?Most people, including doctors, don't get this—they see a condition or limitation, but they don't realize how that affects everything a person does or perceives.
I cannot walk. People know this. But they don't realize that this might also mean that I cannot stand, nor bend over, which means I'm not able to pick things up off the floor, maneuver around objects, or get onto a toilet or into a bed. People with cerebral palsy may end up needing constant help from machines or human attendants. If I drop something, it may take me an hour to pick it up, because no "reacher" is as good as the human hand. It takes me about half an hour to get dressed, because that, too, involves using a lift.
And this is only the physical side of things. It doesn't even include dealing with the emotional side of the frustration that any disability brings, nor the sense of inadequacy that many of us who were disabled from birth struggle with—the prejudice and ignorance of others, the gawks and stares, the whispered comments, the isolation, the I-am-the-only-one-like-this feeling with which we grew up. (At least those of us who lived before "mainstreaming" put people like me into public schools.) Add to that inexperience, fear, timidity, and the reluctance to "bite the hands that feed us."
None of this makes it feel easy or possible to join or create a "liberation" movement. Which is why there are few people with cerebral palsy or other similar congenital conditions rising up in rebellion against their oppressors. I have met people who've formed aggressive, grassroots disability rights groups, but many of them are the formerly able-bodied, or they have friends and family who offer financial, moral, and physical support, and they are housebroken. (After all, that's a prerequisite for most jobs.) They don't have to spend time worrying about how to reach and use the toilet.
It takes up to five times longer for a mobility-impaired person to do a task as it does for a "normal" person to do the same thing. If I have to get up quickly or leave early, I have to sleep in my clothes, because dressing can take up to half an hour—and that doesn't even include shoes, which I haven't worn in years, because they hurt too much and because they take me an hour to put on. Trying to read my mail or write my Facebook posts can take hours. And using the phone is awful because of the dreaded ring when someone calls me back.
Again, this all puts a real crimp in "activism." It's hard to summon the energy. I don't ever see my funding, my care agency gets it all—and I am constantly told to act more helpless than I am so that they can get more. If I ever got my own money in hand, then maybe I could start The Revolution™—but I am tired, fed up, jaded, and cynical nowadays, so it's more likely I'd take the money and find a luxurious, accessible vacation spot somewhere....
But there’s a lot I would fight for if I could.
I have cerebral palsy. I was born with it, and will die with it, I cannot, never could, and never will walk—yet every time I need a new wheelchair or any other device that would make my life better, I have to prove that I need it, I'm still disabled, and I'm unable to buy it myself.
I know what I need when it comes to wheelchairs, generally, but I now have to go to special wheelchair clinics, upon prior approval by doctors and social workers, and be told by an "expert" physical or occupational therapist what I need.
But wheelchair design and function is more about engineering than medicine. Once upon a time, I could tell wheelchair vendors what I needed and they would find or create such a chair. I'd use the Goldilocks method and try out a variety of chairs until I found one that was just right. But now it's all medicalized and State-approved, complete with reams of paperwork, and more than once, what was "approved" turned out to be useless to me—which is why there's a $42,000 wheelchair sitting in some warehouse in Rhode Island. I was not given the option to "try before you buy." Not that I had to but it—taxpayers did, but the chair was too dangerous for me to use, even though all the experts told me it was what I needed.
So yes, I need a wheelchair, but not the ones the state wants to give me. And yes, I am still disabled. And yes, of course I am unable to buy it myself.
I have never been able to fit myself into the standard employment model because I am visually and manually impaired, cannot drive, and have no "real" prior work experience. I have a Master's degree, 26 years of computing experience, and skills as a graphic artist, but the only jobs I have ever been offered were in sheltered workshop factories for less-than-minimum-wage.
But I do have a job of sorts—I take care of myself five out of seven days a week. I get 10 hours a week of help from a long-term care agency for shopping, housecleaning, and transportation to medical appointments, which I need because I am a 74-year-old cancer survivor who is losing her sight. It has nothing to do with my CP. My ability to take care of myself, even with costly special equipment, has saved taxpayers many thousands of dollars over the years.
That's all in the past now, and now, at 74, I am "retired."
One of the ironies of my life is that, in my early 30s, I had to move to "housing for the elderly," where most tenants were in their 80s, now I'm living in "housing for the handicapped" where most of the tenants are young. I miss my own generation. I want to be where activities and events come to me.
I have only one close friend who has been faithfully visiting once every two weeks. My family members visit when they can, but the closest are 400 miles away and the others are much, much further than that. It's years and decades between visits. I have close kin I've never even met. Facebook keeps me in touch, but I need more. I need to be useful, to share my interests and stories. What energy I have is used to fight loneliness, boredom, and depression.
Age is not a medical disease, it's a stage of life that can last for 20 or 30 years. So I am considering moving into "housing for the elderly" once again, but I do not want to trade one miserable situation for another, and by no means do I want to "go somewhere to die." I want more than to be cared for; I want to be cared about. A good place will free me up to enjoy my age, secure in the knowledge that I won't have to battle against bad equipment and unhelpful aides, nor struggle on my own with a body that never worked right but is now too tired to manage even simple chores.
I think I've made a good run of it, though.
Maybe I'll meet someone in my new home who can reminisce about World War II with me.
I have a lot to talk about.
Susan Trudeauis an avid reader who loves animals and nature. She earned her B.A. and M.A. and has spent her life volunteering and working on her hobbies—tutoring disabled kids, volunteering at the zoo, drawing, camping, singing, computing, writing, and advocating for disability rights and environmental justice. She has a cat, Mishka.
Photo credit: Self-portrait of the author, 1970