National Disability Awareness Month is a time to pay tribute to the accomplishments of men and women with disabilities and raise public awareness of their individual contributions and needs.
I am married to a man who is disabled, although I've never defined him as "dis-anything," which is why it's always a shock to me when people single him (and me) out for his disability rather than for our respective accomplishments. Just the other day, a woman at a dinner party whom I hardly know said, "I think you are so amazing. I really admire what you do."
What I do (among many things) is live with and love a man who broke his neck in a surfing accident two months before we were to be married 42 years ago. I stood by him, not because I am a saint or particularly brave, but because I was in love with him -- a vibrant documentary filmmaker with a smile that could melt the polar icecap, great politics and an unerring ability to make me feel good about myself.
I've struggled for a long time to explain why remarks that are often well-meaning are so offensive to me, why singling me out for being married to a man who's disabled diminishes rather than enhances my place in the world. The only thing that makes my husband different is his difficulty walking, which has worsened (like most people with age). He's gone from a cane to a walker and now needs to use a wheelchair or electric scooter when we go out. When we use the wheelchair, I have to push; when he's on the scooter, I walk alongside him. We don't feel very different from other couples who go to the park, to restaurants or to the movies until someone makes an earnest, but ultimately gratuitous, remark. More upsetting is when they address me but ignore my husband (in his presence), like the airline clerk who asked me where he would be most comfortable or the man, probably the same age as my husband (late 70s), in the park who asked in a jocular tone: "How's the young man doing?"
I've tried to be more tolerant, to understand why people feel compelled to say something or make a big deal out of what we and many disabled people do every day. Behind every "You're so amazing and I don't know how you do it," I hear "There but for the Grace of God go I." When they address me as if my husband isn't there or when they infantilize him with silly remarks (another favorite when he's on the scooter is "Watch out not to speed!") they make us feel separate, objectified, other.
We may all grow up wanting to be special, but not "special needs." I feel no sense of accomplishment that my husband has had to endure physical hardship, as graceful as he is about it. Nor that I have to help him button his cuffs and clip his nails (the few things he can't do for himself). For those who say, "I could never do what you do," I say you have no idea what you could do until you have to do it. It's scary to think that the same thing could happen to them that happened to us, and I understand that the remarks are their way of distancing themselves from a terrifying scenario.
Disabled, handicapped, crippled, physically-challenged (the acceptable nomenclature has changed over the years), the image we project, individually and as a couple, often causes ill ease, embarrassment and sometimes condescension. This is very different from empathy -- an offer to help open a door or willingness to wait patiently while we exit a theatre.
There isn't a day I don't wish the accident had never happened or, in my baser moments, that it happened to someone else. At times I've wanted to run away. After 40 years of marriage, I'm sure I'd have some of those feelings whether or not my husband had been hurt. But when people praise me for the worst thing that ever happened to me, I want to tell them that I'm not sure if my husband had not regained movement, had we not been able to have a sex life and children (we have two), what I would have done. Most of all, I want them to stop projecting their own anxieties onto me.
So what do you say to someone who's handicapped or to his spouse/partner? More times than not, you say nothing. Or you don't say anything you wouldn't say to someone who isn't handicapped. Rather than an unsolicited expression of sympathy, the woman at the dinner party would not have offended me if she'd asked me a direct question: "How do you travel with a wheelchair?" or "What do you do when the bathroom is down a flight of stairs?" Or even "Is your husband in pain?"
I appreciate it when someone says "You two seem to handle your life with grace and humor," or "I never hear you complain." There's a big difference between commenting on the way we negotiate our life and making us into martyrs. Placing us on a pedestal or, more accurately, in a "faulty tower" feels more like a put down than a compliment. At times, special treatment is welcome. I certainly don't mind being boarded first on a plane or whisked into a museum or movie in front of everyone else. But that's not just special treatment. It's the law.
The Americans With Disabilities Act was passed in 1990 and "prohibits discrimination against people with disabilities in employment, transportation, public accommodation, communications and government activities." It granted the same rights and respect to the disabled as to the able-bodied. What it didn't and can't do is change human nature, the deep-seated fear of anything that isn't "normal," and the instinct to disassociate from that which makes one feel uncomfortable.
Kids totally get it. They don't project their fears or rush to judgment. They don't pay any more attention to me pushing my husband in a wheelchair than pushing my granddaughter in her stroller. They're usually fascinated by the scooter (it's bright red) and rarely see the man who's driving it. They don't feel responsible, embarrassed or show much sympathy when my husband struggles to stand or on occasion falls down. They're more honest about their fears, their curiosity and their confusion. When a little boy asked his mother why "that man has crooked legs," she tried to shush him, but my husband answered his question directly and then asked the boy if he wanted a ride. He did.
When I said "I do," people told me I was taking a big chance (some thought making a huge mistake), but I didn't listen. I'm not sure if the odds against our staying together were any greater than the odds for the general public. But love isn't about odds. It is about taking chances. So for those who are tempted to tell me how amazing I am, I hope they'll understand that the best compliment is no compliment at all.
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