Perspectives on Disability

ahnna-harryWhen I first met Ahnna, she could still get around on her crutches. That was 12 years ago, and she was 43. Up until then, she had spent most of her life getting around on crutches or, at home, crawling on her knees. A birth accident endowed her with Cerebral Palsy, which left her unable to walk without the help of her crutches. She spent many years walking on the weight of her hands and shoulders.

People are not made to support their body weight on their arms, so inevitably her joints gave out in middle age. Crawling on her knees at home had helped save those joints, but the doctor said she had basically ruined her knees in the process. Her youthful, determined self did not foresee her middle-aged self, which would resign itself to a power chair now that her joints were no longer able to keep her upright. No youth ever foresees what age and time may take away. Youth and energy seem forever.

Ahnna is now 55 and has lovely silver hair, which she refuses to color. I’m glad. I wouldn’t like it if she colored her hair. But society apparently expects that silver hair means “very old indeed,” and more often than not, she is mistaken for my mother, but not just because of her hair. The power chair also screams “very old indeed” even though there are plenty of young people out there who need them. Sometimes this assumption works for us. If a contractor is helping us out, who knows what their attitude toward a same-sex couple would be. If it’s easier for them to assume that she’s “Grandma,” then fine. We have found that people are often more sympathetic (and therefore more helpful and honest) if they assume it’s just the single mom and her mother, making do.

We laugh about this, of course. If people actually looked beyond the power chair and the silver, they would see that this is not an old woman. But for outsiders who don’t need to know, well, we just go with the flow.

My mother was disturbed that I was with a woman (she never acknowledged our marriage). She was equally disturbed that I was with a disabled woman, however. It messed with her sense of order and perfection. My daughter’s marriage was not supposed to look like THAT. My mother could not directly confront the disability without seeming like a complete jerk, though she accomplished that anyway. She worried aloud that maybe I was taking on too much, and that Ahnna would become a bigger burden as time went on. She would look at Ahnna’s feet, affected by edema, and advise less salt in the diet, as though that alone would fix the problem caused by not being able to walk like everyone else. Female and disabled. My mother’s worst nightmare.

It is true that Ahnna faces more challenges as she ages that so-called “normal” people do not. We went from a scooter to a power chair with a lift in the van. We are now transitioning to a full van conversion so that her regular power chair can go anywhere. Her range of movement has diminished even in 12 years. So, yes, she is more disabled at 55 than at 45 or 35. It happens to us all, in one way or another. It can happen suddenly, like a lightning strike. One day, you’re able-bodied; the next, it’s all gone, and you’re left with a new reality. It can strike anyone at any time. If your partner is unwilling to take that on, then perhaps you need a better partner.

Ahnna’s mother, who was an amazing woman, passed away last year. She always advocated for Ahnna, and she used to say that, in a way, she was lucky. Her disability was on the outside, obvious for anyone to see. But everyone has a disability of some kind, and in most cases, you can’t see it. Some disabilities are mental, or emotional, and they can lie hidden, unseen and unacknowledged by those who have them. Everyone has their challenges. Dealing with the mental or emotional challenges of your partner is no less trying than dealing with the physical challenges of the obviously disabled. Sometimes, it’s much harder.

When we’re in public, people tend to address me instead of Ahnna. We’re not socialized to look down. If a person is in a chair, we tend to assume that, somehow, they are not capable of discussion, as though they have lost the power of speech. It’s an unconscious thing. If you see someone in a chair, feel free to look down, into their eyes, and address them directly. They will appreciate it.

I always say that we are lucky to live in a technological age that provides the tools to help us deal with disability. Not everyone has access to power chairs or van conversions. There should be more provisions for the impoverished disabled, who find it harder to make a living precisely because of their disability. Transportation and some means of independence are vital to helping the disabled to contribute what they can, no matter how small. Their bodies may not work well, but that doesn’t mean their minds do not. Hello, Stephen Hawking.

Our children are accustomed to seeing one of their Moms in a power chair. It is just the way life is. When they see another person in a chair, it’s the most normal thing in the world. But some children are curious. It’s okay for them to wonder aloud and ask questions. How else are they going to learn?

I hope, for my father’s sake, that he never becomes disabled. I don’t think my mother would be a very kind caretaker. To be honest, I don’t think he would, either. But they are in it together, and one may very well end up caring for the other in ways that they may not enjoy. This much I know:  I am solid with Ahnna, so helping her physically is no big deal to me. She cares for me, too, when I’m sick. She’s perfectly capable. We’re a team that way.

The other day, a friend of ours said to Ahnna that “there was nothing but kindness in her face.” And that’s true. I realized in that moment that part of my purpose was to be her protector. I told her long ago that I would be her legs. And I am the strong one, the warrior. She is the gentle Buddha, tending the home fire. Yin, Yang. Perfect complements.

As you go about your days, remember that everyone has a disability that may not be obvious. If it is obvious, help when you can. The physically disabled must depend on the help and kindness of others sometimes. (This is also true for the mentally and emotionally disabled!) If there’s only one disabled stall in a restroom, take note. I’ve literally seen a woman charge past Ahnna to the only disabled stall in a restroom, forcing her to wait on her crutches, which she could not do for long periods without the risk of falling. Mind those parking spaces. People in a van conversion cannot park anywhere else.

Most importantly, remember that people deserve compassion and dignity, no matter what they look like, what they can do, or how well they can cope. A person’s world can change in an instant. Imagine how you would want to be treated, and then do that.

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