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.

How to Oppress People of Color

We have a holiday named for this guy! But we still have work to do. Photo by Dick DeMarsico, World Telegram staff photographer

We have a holiday named for this guy! But we still have work to do.
Photo by Dick DeMarsico, World Telegram staff photographer

A black man once told me that, as a white woman, I didn’t have the right to write about racism. I understand his point; I don’t live in his skin. On the other hand, I pointed out that as a white woman, I am part of the problem, and therefore I must write about racism. I don’t believe white silence is helpful.

There can be no doubt that people of color are more likely to be killed by the police than white people are. Given the almost daily examples in the headlines, I cannot imagine how this affects people of color. Depressing? Yes. Horrifying? Yes. Outrageous? Yes. Scary as shit? Absolutely. When I leave my house, I don’t worry about being wrongfully arrested or killed by a public servant.

So, dearest white people, I know many of you care. I know many of you want to do your best. I know that, if you exhibit racial biases, you are probably blissfully unaware of it. I freely admit that I have been a complete idiot at times in my past, too. Life is for growing and learning, so let me discuss some of the ways in which white people may unconsciously oppress those who have a higher melanin content in their skin.

When we see another killing of a black person in the news, it’s uncomfortable, so our brain wants to make us feel better about it. Here are some of the things that may go through your mind:

He/she must have done something to deserve it.

This is what horror writers understand: if you’re going to kill a character, perhaps gruesomely, then you first write them so that when they die the reader will secretly applaud. No one minds if the despicable person gets eaten by zombies. Alfred Hitchcock set up Janet Leigh’s character in Psycho as an immoral woman who casually slept with men, thereby setting her up so that, as a slut, she gets what’s coming to her. So naturally, if a policeman killed someone, well, it must have been their own fault somehow. Right? See also: Blaming the victim.

If he/she didn’t deserve it, then they must have done something stupid.

Okay, maybe they weren’t actually robbing a store or dealing drugs, but maybe they already have a record (and therefore did something in the past to deserve it), or they were just “uppity.” Maybe they gave the cop some attitude, or did something to make the officer feel threatened. While there can be no doubt that politeness goes a very long way, there is no law that says that citizens are required to be polite to the police. People become upset. They get stressed. Cursing at a police officer may be unwise, but it is not illegal. A death sentence seems a very high price to pay for inflamed passions.

He/she must have done something to arouse suspicion.

We assume that all police officers are completely rational, and that they would never harass a civilian without a very good reason. But officers (and white people in general) tend to make assumptions about people of color that do not apply if the person is white. Unlike Sandra Bland, I have never been pulled over for failing to signal a lane change. Unlike Trayvon Martin, I have never been shot dead for walking in my neighborhood wearing a hoodie. Unlike Henry Louis Gates, I have never been arrested by the police for trying to enter my own home. No, black people do not have to do anything to arouse suspicion. Their mere existence is suspicious. If you have ever crossed the street to avoid walking past a man because he is black, I am talking to you.

He/she must have been hanging with the wrong crowd.

When we see another black death on TV, there is the initial assumption that these are poor folks from the ghetto, probably doing drugs and stealing. Because those are the only kind of black people in America, right? Oh, I guess there are some middle-class black families, but those people don’t end up dead on the news, do they? Somehow, our narrative says that “poverty corrupts.” All those welfare queens come from somewhere! And if you’re poor in America, you deserve it. And if you’re black and poor in America, you’re a thug. Thugs deserve to be shot to death. If you were shot to death and you’re not a thug, then you must have been hanging out with thugs, which brings us back to: You deserved it.

I have known plenty of poor white people over the years. Most of them aren’t thugs. And I’m pretty sure that if one of them was shot dead over a traffic stop, the community would be upset. But even the few penny-ante white “criminals” (if you count drug use) that I’ve known don’t deserve that kind of fate. We should extend our compassion to everyone, regardless of their skin color.

Black people are just “like that.”

You know what I mean. “It’s just how they are.” Naturally violent. Behaving like animals. No surprise when one gets killed. (“They deserve it.”) When a black person becomes angry, a white person feels threatened. When a white person becomes angry, another white person just sees an angry white person. White people love authority, and we submit to it more easily than we think. We automatically side with authority in most cases. When a shooting occurs, our first thought is that the officer was in the right. And that may be the case. But the officer may just as easily be in the wrong. They are imperfect humans in a stressful job, carrying guns. Shit happens. Unfortunately, it happens more often to black people, because white people tend to see them as a threat.

And so on…

I have written before about how well-meaning white people can exhibit racist behavior, unaware that they are doing so. We have had around 400 years of this nonsense, thanks to a culture that thought it was appropriate to kidnap other people, put them in chains, and sell them to people who would exploit their labor. Capitalism at its finest! But hey, you gotta watch these slaves. They’re probably not too happy about this state of affairs. They might try to escape, or worse—revolt. They might even want revenge.

Yes, our legacy of White Trauma is centuries of fearing those whom we imprisoned and exploited and paranoia that they want to repay us for all we’ve done to them. It’s in our national DNA. That’s a painful thing to acknowledge, however, and isn’t it so much easier to just deny that there’s a problem? Hey, this is a post-racial society now! Go Obama! Kill the Voting Rights Act. Problem solved. Nothing to see here.

Our black brothers and sisters keep saying to us, “Please listen. We want to live side by side as equals. Your attitudes are causing us pain. Racism is still occurring. We are dying because of it.” And we switch off the news without a second thought and go to the mall. “Oh, well, I trust that justice will be done.”

The only thing necessary for the triumph of evil is for good men to do nothing.
~ Edmund Burke