Ten years ago, if you’d ask me whether disability bigotry existed, I would have given you a blank stare and blurted out, “Disability bigotry? What the hell is that?”
Then I was diagnosed with the disabilities I’d had all my life, and so much made sense. I finally understood how my body worked, and that knowledge was life-changing. But more than that, I finally understood the kinds of fictions, fears, and prejudices that people carry around concerning people with disabilities. It’s been an education, truly. Many of those retrograde ideas have affected me all of my life, of course. I’ve always been very clearly different from other people, and even without a diagnosis, those differences have put me on the margins in a number of ways. The definition of normal in our culture is absurdly narrow, and I have always been outside it.
For a long time, I tried to find refuge in analyzing all the ways in which disability prejudice had worked its way through my life. After all, I have a mind that never rests, and I can analyze the hell out of just about anything. But disability bigotry has many forms, and no amount of analysis is a bulwark against the pain of being at the receiving end of it. An interaction earlier this year brought that truth front and center in my life.
I have been married to my husband Bob for over twelve years. When we first met, in June of 2000, Bob had been married for nearly twenty years to a woman named Karolka. In 1999, she contracted ALS, and in April of 2001, she passed away. While Karolka was alive, Bob and I became friends, and I was one of many, many people who helped support him through her illness and passing. In December of 2001, our relationship changed. Bob and I became a couple, and we were married in January of 2003.
Recently, Bob had occasion to talk to one of his relatives, a man he has known all his life and to whom he has always felt very close. With reference to my disabilities, his relative offered the following advice: “You spent all that time taking care of Karolka, and now you’re taking care of Rachel. You need to leave Rachel and find another woman so that you can be happy.”
I am 56 years old. My husband is 70. And now, at this stage of our lives, the advice to my husband is that he should abandon love, dismantle our marriage, break up our family, and live in loneliness — all because I have disabilities.
Bob was so shocked that he could barely respond. When he told me what had happened, I almost lost my breath. One friend I told nearly burst into tears. Another responded with an alarmed gasp — the kind of sound you might make after inadvertently running into an electric fence. Bob and I spent the day in grief and pain, looking into each other’s eyes, trying to hold the fact that a family member had actually spoken such words. We felt raw and vulnerable for many weeks afterward.
It’s one thing to deal with disability bigotry from complete strangers. It’s entirely another to have it walk unbidden into your life in the figure of a family member. I’m not sure how to describe the shock and grief except to say that they were both profound.
My husband has never expressed any unhappiness with our marriage — for the simple reason that our relationship is a mutually supportive one that brings him great joy. In fact, he has expressed that feeling many times to many people. So, at first, I tried to wrap my mind around how the message “I’m so very happy in my marriage” could engender advice to leave that very same marriage. But then I remembered that bigotry leads people down the most irrational of paths, and that you can’t wrap your mind around what’s irrational. You can only stand back and see it for what it is.
One of the things that makes the whole suggestion to leave me so absurd is that my husband’s relative does not know me. Not at all. Over the years, he has called my husband frequently, but he has never made any effort to create any kind of relationship with me. I have met him once in person. I’ve had one short phone conversation with him — and only because I picked up the phone when he was calling my husband. We’ve had some brief contact by means of email and Facebook. That’s it. While my husband and I have driven several hours to arrive at his house, he has never once entered any home we have ever lived in, so he has no idea how we live or how we love.
In the absence of any direct knowledge of me or of my life, my husband’s relative is making assumptions about our marriage based on a stereotype — that because I have disabilities, my husband must be my caregiver, I must be a burden, and our life must be so sad and so tiresome that it’s an injustice to him. Stereotypes are the very basis of bigotry, and that particular stereotype has led this man to commit the terrible injustice of telling a husband that he should leave his wife. And why has he done this? Because he believes that people with disabilities are a burden on the people who love them.
And he is not alone in that feeling. I don’t know anyone who has disabilities who hasn’t been told that kind of trash.
The assumption that underlies this kind of talk is that all disabled people are passive recipients of assistance, unable to contribute to the lives of the people around us. In the present situation, this bigotry takes the form of an assumption that Bob is my caregiver and that I am simply a passive recipient of his help. Neither is the case. There is nothing wrong with having a caregiver, of course; many people do, and it allows them to live in the community with dignity. But like many other people with disabilities, I have never had need of a caregiver. And far from being a passive recipient of assistance, I’ve raised a well-loved kid to adulthood, I have two master’s degrees, I’ve published four books, I manage the work of eighteen writers on a website devoted to social justice, I co-direct a Jewish community service organization, and I have a rich, full life.
And trust me: There are plenty of people with caregivers who have similarly rich, full lives — and plenty who do not. That is because (gasp!) our lives are as varied as the lives of nondisabled people.
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What galls me most, though, are not the assumptions being made about me and mine, but the absolute lack of concern for my welfare. After all, if this man believes — albeit erroneously — that I am dependent upon my husband for caregiving, then what does he think would happen to me if my husband became convinced that I am a burden who needs to be thrown overboard, rather than a human being worthy of care? What would become of a person whose husband decided that caring for her was an injustice that had robbed him of his happiness? I have seen, with my own eyes, the suffering that happens when people are abandoned and denied care. I’ve seen, with my own eyes, people who are sick and in pain — all alone, bereft, and without comfort. It’s hideous thing to witness. No human being should ever have to endure such a fate, for any reason.
This is what bigotry does — it dehumanizes and it leaves people for dead. I am fortunate to have the kind of support that keeps me safe and enables me to live with dignity. But safety and dignity are the rights of all and should never be a matter of mere good fortune. Stereotyping disabled people as burdens, suggesting that to be married to a disabled person is an injustice, devaluing disabled people so thoroughly as not care at all what happens to us — none of it has any place in a just world.
What does disability bigotry look like? It has as many faces as any other form of bigotry. The problem is that too many people still don’t recognize it for what it is.
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