Dear Cary,
Due to an accident, my leg and part of my hip had to be amputated.
As you can imagine, this completely devastated me ... I was only 22 when it happened. I'm doing OK with coming to terms with the things I will never do again (a prosthetic isn't an option due to the damage done). I'm getting pretty good with my wheelchair and I am finally willing to venture out of the house with an attendant for short trips. My issue is ... the outside world. People stare. They gape. They gasp. They hurry their children along as if I'm some sort of monster. Surprisingly, it is young children who are the most kind and easy to handle when I go out. They are usually very upfront about their question ("Why is your leg gone?") or they stare not with horror but curiosity ... usually a bright smile and a wink is enough to get them smiling back and moving on to whatever it was they were doing.
The adults have been pretty horrible, overall, and I just don't know how to deal with it. People avoid me, they whisper about me, they point, they stare, they ignore me and talk to my attendant even when I'm the one who asked a question ... it just hurts. What are people really thinking when they do that? Is it that they are afraid of me? Pity me? Something else? How do I make friends, and (God forbid) go about looking for a relationship when everyone I see treats me like a mobile freak show or a pity party on wheels? I really am not scary looking -- pre-accident I had no trouble getting dates. What remains of my hip is a little freaky, but honestly sex isn't even a worry for me now ... I'd just be happy to have a nice date and maybe a kiss at the door at this point. Unfortunately, taking me out requires a lot of planning (can the chair fit in the car, are there accessible bathrooms where we are going, are there stairs, etc.), and frankly it sets it up as a caregiver-patient relationship more than a potential romantic one, especially if I get tired and need to be pushed (which is often).
Is it possible for a disabled, sort-of disfigured 23-year-old woman to have a relatively normal life? Or should I just resign myself to being alone with my books? Where do the disabled fit in with the regular workings of society? I am sad to say I've never met anyone disabled before. I just don't know if longing for what others my age have is setting myself up for failure, you know? I just don't want to be lonely, sitting at home while others go out to parties and concerts and all those other things I had skipped in college to focus on my studies (I said to myself, "I'll party when I graduate" ... and then this all happened). I appreciate any advice you have. I just don't know how to deal with all this.
Not Quite Merrily Rolling Along
Dear Not Quite Merrily,
If this were the 1950s, you might be out of luck. When Ed Roberts, paralyzed by polio in 1952, started attending the University of California at Berkeley in 1962, he broke new ground for disabled people. If you read about his life, and about the institutions that now exist in part because of his efforts, it may lift your spirits. A remarkable array of assistance, both human and mechanical, is available today for disabled people who want to live full, rich lives. So I suggest you investigate the worldwide community of disabled people who are learning to do things they never dreamed possible. They will probably tell you that your fears are normal, that everyone has similar thoughts: How will I ever lead a fulfilling life? Why do people stare at me and act so strangely now that I'm in a wheelchair? Will I ever have a normal dating life?
People who have gone through what you are going through are the ones who can help you deal with the rudeness, shallowness and ignorance of people around you. They're the ones who can help you learn to live with strength, dignity and humor. And they're the ones who have experience with tricky questions like how to tell potential dating partners that you will need wheelchair access, how to deal with issues that arise around sex, and, basically, how to "fit in with the regular workings of society."
As you approach this community, you may also find, to your delight or chagrin, that you are now part of a movement. Now, you may not be a politically minded person. Some of us are, some aren't. But it does help to know when our choices have been narrowed for the profit of others. Like it or not, you now belong to a class of people who have had to fight for their rights -- partly because extending those rights and accommodations has required work and expense. Some of what you see in the faces of people who do not look you in the eye, who talk to your attendant instead of to you, who hurry away, is the wish simply not to confront your needs, not to admit that you exist and are entitled to the same things as any other person.
So whether you are passionate about politics and government or not, I would think that knowing the history of the Americans With Disabilities Act would help you see where you stand as a member of a class. Understanding how the laws that mandate accessible facilities in a great and growing number of public and private buildings followed logically the successes of the civil rights movement may give you a new perspective on social justice. Had disabled people remained silent, you would be worse off today. You have many choices because of political action.
Imagine if every now and then a middle-class white man had a car accident that turned him into a ghetto youth. Imagine if white women were known to trip and fall occasionally and turn into undocumented aliens. In other words, how might the civil rights struggle have been affected if people regularly experienced the sudden loss of privileges they had come to believe were their inalienable rights? I can't help observing that through your accident you have been given the opportunity to cross over into a formerly protected region of consciousness. You know what it's like to take mobility for granted. Now you know what it's like to lose it.
I'm not trying to insist that you become an activist, or minimize your pain and suffering, or make light of any one category of humanity. I don't pretend that losing your leg was a lucky break. But in adversity lies opportunity, however hidden or dim. And we must find that dim or hidden opportunity and seize it. Otherwise, despair swallows us whole.
So I hope you can not only get by in life but find new purpose. For one thing, you can educate the rest of us; you can remind us that the ramps and the wide bathroom stalls and the raised streetcar platforms and the blue-marked parking spaces actually mean something profound about civilization and the human spirit: that humans do strive against all odds for greater freedom and mobility and rights. Keep reminding us of that, so that should we become disabled we will not look back at our former ignorance with shame but instead can say, Yes, because the community of disabled people has been visible and vocal I was aware, I knew that disability was one of the risks of being human, and I recognize the contributions of the disabled people who paved the road for those who follow. Further, I must say, when I see people in wheelchairs going about the city, I'm not glad they're disabled, but I'm glad that they're living life. Seeing the disabled accomplishing the tasks of daily living means that we as a society have made some progress. It means there is a little less unhappiness, failure and isolation in the world. It means that, should I myself become disabled, there is hope that I can continue doing much of what I love.
So when I see you whizzing by, I will say a little thank you that you're whizzing by. I know it's not your choice to be in a wheelchair. But I have to find evidence of human victory over adversity wherever I can, or surely I'll sink into madness.
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