Fuck You, OI

A friend of mine died tonight. He was in his late twenties, a wicked-smart and passionate man with more compassion and understanding than most people I’ve met. We talked a couple of times a week, usually about politics, because this election has been driving us both insane.

To offset this, we’d taken to sending each other kitten pictures. It seemed to be helping.

But earlier today, he fell over in his wheelchair and hit his head. Doctors tried some things and they didn’t work and he’s gone. He’s just gone. This person with plans and love and art and friends, the center of a wheel of people who knew him but didn’t know each other, he’s just gone. There’s a space now, a big sucking hole.

And he didn’t die technically because of OI (the shitty bone disorder he had that my daughter also has), because I guess anybody can fall and hit their heads and that’s the end. But he was in a wheelchair because he had OI, and he had tipped his wheelchair before and gotten hurt, and I also know of a number of other people with OI who fell in their wheelchairs and hit their heads and didn’t survive.

And I have seen my daughter go over in a wheelchair, her tiny, feather-light body slammed to the ground in a second while I watched, out of reach. She survived that fall, but that’s the stuff that wakes me up at night in a cold sweat.

So yeah, right now, I’m going to blame OI.

Because having severe OI means living constantly with this tenuousness, this constant fear of a fall in your wheelchair (the equivalent of able-bodied people tripping over the curb), or of getting jostled and breaking a bone, or being involved in a fender-bender and ending up in the hospital for months with fractures or worse, or fear of getting a cold that could lead to pneumonia, because that can (and often is) deadly for people with OI because their lungs are compromised. The slightest nudge from stability can send a person with OI into a fracture or deadly head injury. And this is how they live their lives, with this constant awareness that the slightest thing can cause the end in a heartbeat.

Yes, I know that, in the broad picture, this is true for all of us. I’m talking about OI right now, so take your able-bodied privilege elsewhere.

Jeremy had a severe form, like my daughter does. He also wrote stories of incredible imagination, and made gorgeous copper leaves, and had a fabulous fiance he clearly adored.

In the OI community, we talk about the “unbreakable spirit” and some people use the phrase “O I CAN!” because staying positive about all the things they CAN do helps keep people dealing with this disorder from falling into a terrible depression about the pain and fear associated with it. And yeah, people with OI are tough, persistent people. From what I’ve seen, it’s because OI doesn’t affect mental acuity, and the power of the brain and spirit sustain people with OI through some horrifically painful fractures and surgeries over their lifetimes, starting when they are little children. So they’ve been through some terrible things and once they are “healthy” (fracture free) they can start enjoying life for a while again…until another fracture happens.

I can’t bring myself to be positive about OI right now. The “unbreakable spirit” is great, but right now, Jeremy’s body broke. His humor and intellect and doggedness just disappear now, because his body broke. There’s a hole now because his body broke. And I can’t be patient or understanding or accepting of the fact that OI does this to people. It makes them fragile, like sheets of translucent paper, a wrapper holding in this incredible BEING who is so much more than the stupid breakable body. These delicate packages of humanity.

When my daughter was just a baby, one of my family members suggested we wrap her in bubble wrap. It would, of course, have prevented her from living, so it wasn’t a viable option. But I did consider it briefly, knowing there was little else I could do to protect her.

And no I won’t turn the conversation to how this reminds me of how vulnerable my daughter is, because I can’t handle that thought tonight. It’s enough to know that Jeremy, the vociferous warrior for social and political justice, the curious explorer of other minds, the bold challenger of the status quo, has lost his struggle to keep his fragile container intact.

One fall.

Fuck you, OI.

 

Herve WHAT?

My daughter and I were perusing some beautiful artwork at the art show in the Mt. St. Helen’s science center. The artist had shared his vision of the volcano, and we were taken with his work.

“Do you know Herve Villechaize?” a voice interrupted our conversation. We both turned around, not sure the question was directed at us.

Oh, but it was.

“I’m sorry?” my daughter said, plastering on her friendly-but-guarded face.

“Herve Villechaize. He was a wonderful actor and my good friend. Do you know him? You look just like him!”

I knew *exactly* where this was going, but my daughter didn’t. She is too young to even know the name, but I was once a fan of Fantasy Island, the ultimate 70s objectifier of people with disabilities. Well, just that one person. Mr. Villechaize.

“Oh,” I said, turning on my customer-service-warm-and-engaged voice, “Isn’t he part Asian? My daughter’s half-Asian, that might be why you’re seeing the similarity.”

Our visitor shook her head slowly, “Oh, no, he’s Francais!”, with a flourish, “And he did a film with my father.”

“Your father worked in films! How wonderful!” I was relieved for the chance to turn the conversation away from this woman’s inappropriate invasion into my daughter’s personal space and back where it belonged, on the woman’s belief in her own importance.

“Yes, he was a small-part actor who did several films. His name was Blankety Blank, look him up!” She stood grinning ludicrously for a moment. I smiled back.

“So, Sophia,” I said, handing her the print we considered purchasing, “Do you like this one?”

Our visitor waved her batik-shrouded arm at us, said “Yes, that’s a beautiful piece! Okay, great, have a wonderful day!” and returned to her own artwork-selling station to help a potential customer.

I know nothing about Mr. Villechaize except his role on Fantasy Island and in a James Bond movie as (but of course) a villainous henchman. He was the only Little Person (although he preferred “midget”, apparently) many people in the 70s ever saw, famous for speaking the line “Da plane! Da Plane!”

As it turns out, he was also half-Filipino, just like my daughter. So the woman had a point there, despite her ignorance of her “good friend’s” heritage. After all, you CAN be French AND half Asian.

The resemblance to my daughter ends there, because Mr. Villechaize had a condition known as dwarfism, and my daughter does not. While this interaction was pleasant all around, largely because it was interrupted by someone wanting to buy decidedly unattractive pottery, I felt that same creeping protective sensation that makes me want to stand in front of my daughter and beat back rude people with a spiked stick.

It happens in bathrooms when young girls stand stock-still in front of my daughter, jaws dropped, and glance at me with a weak smile as if to say “I’m smiling so you don’t notice how rude I am” and proceed to ignore my daughter when she asks them to move so she can reach the sink. When I am there, I will follow up her request with “please move, she needs to wash her hands.” They’ll shuffle slightly out of the way and continue staring, amazed at their opportunity to see a real live person with a disability out here in the wild. These encounters invariably end with me saying “Please don’t stare. It’s very rude.” Every single one of these kids responds the same way: another weak smile, a glance at their mothers, and their revolting return to staring at my daughter.

In my daydreams, I imagine putting my hands on the sides of their heads and turning them gently in another direction. The same way I move my dog when I want him to learn a new command, the way I would redirect my own children when they were very young and not complying. I know this is new information for these kids, but they clearly aren’t understanding the words I’m using, and I think this technique would be very useful, if it weren’t a violation of *their* physical space. And, most likely, against the law. As I said, it was my fantasy.

Can we outlaw rudeness borne of entitlement? Can we allow enforcement of manners?

It pisses me off that my daughter has no recourse for this behavior. She has to tolerate these intrusions every time she leaves the house. Wouldn’t a little physical training help the population at large? Or even just a tiny dose of Jedi mind tricks. Or a non-contact Taser! A little jolt that gets them out of their trance.

It’s a good thing I wasn’t around later for the guy who approached my daughter and told her she was so beautiful and he wanted to take her picture. He appeared to my husband to be mentally ill, and I was glad Tim was there to provide protection, if necessary. I have been with my daughter when she’s been approached by people affected by some mental disorder, and her vulnerability in those circumstances terrifies me. She would not be able to fight them off, should they decide to place their hands on her. One guy wanted to pick her up and hold her like a baby, and if I hadn’t been there, he probably would.

Do you see why I would like to Tase people?

The conversation about Herve Villechaize is tolerable, even a tiny bit amusing. Her fragility in public spaces is not.

So I’ll reiterate: respect the right of ALL people to exist in the public sphere, whether you’re curious about them or used to them or not. Every single one of us is JUST A PERSON, not an object for your education or amusement or condescension. Approach her as another human being and not your as stand-in for experiments with the disabled. It’s not her job to educate you on her condition or on life in a wheelchair or to make you feel better about yourself for talking to the cute little girl in the a wheelchair. It’s your job to do those things for yourself.

Leave my daughter out of it.

End of the Roll

The last four posts were written in response to historical criticism and questions I have fielded as a mom of a person with a disability. Not everyone who observes our situation weighs in with criticism, but enough have done so over the years to make me reflexively defend my actions to potential naysayers.

From her well-intentioned classmates to gossipy parents to (really) intrusive relatives, I’ve fielded a host of queries about how we handle life with a disability. The large percentage of armchair analysts have no personal experience dealing with a disability, but that doesn’t stop them from having an opinion. The bureaucracy that has grown up around people with disabilities is often impossibly dense, labyrinthine and punitive. This medical/governmental complex, what I call the “Disability Business”, compounds the day-to-day difficulty of functioning with physical impairments. That combined detrimental effect is what I wanted to highlight.

shoes

The point isn’t to encourage pity, but to increase understanding. Because for every person who will tell me face to face their “simple solution” to the complicated problem we’re facing (always starting with “Well, why don’t you just…”) there are dozens of others who won’t share their opinion directly, but instead rail publicly about how disabled people have a “free ride”, how people with disabilities are faking it for the good parking, how people with disabilities are somehow gaming the system.

If you’ve read this whole series, let’s take stock. If a person without a disability fell down and cracked some ribs, she might go to the hospital, get an x-ray, have the ribs taped, get some pain meds, go home, rest, and gingerly go about her life. The ribs would be an annoying, painful, but ultimately inconsequential blip in her day-to-day function.

But for my daughter, cracking ribs meant total bed rest, a personal assistant for all position changes; she couldn’t sit up or lie down alone. She couldn’t push a wheelchair or reach her controller, so someone else had to “walk” for her. She couldn’t go to the bathroom or eat without assistance. From a fairly simple, low-level fracture, she was completely incapacitated. If this fracture had been worse, say multiple ribs fractured, or an arm or leg, she’d be down for weeks.

And unlike people without disabilities, for her, fractures like this can happen at any time. These interruptions are so commonplace that we have a routine in dealing with them. And my daughter’s disability isn’t even as involved as other peoples’; she functions at a high level.

I guess what I want from this is for people to just think. If you have the impulse to offer advice to a person with a disability, take a moment. Realize you may not know what life is like for them.

Maybe you can’t walk a mile in their shoes, but the very least you can do is not critique the way they are walking.