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.


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.


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.



Frame by Frame

When I talk about my daughter having a disability, I get a lot of sad faces, murmurs of morose sympathy, and sorrowful eyes averted, so as not to look directly at the reality of being disabled.

It’s the last one that I wish I could fix. I don’t care if people have pity, and I would appreciate genuine sympathy, but without taking a good hard look at what it’s like to live with a physical disability, pity and sympathy aren’t genuine, they’re hollow gestures.

In that spirit, I’m going to share a slow-motion example of what happens when my daughter, an adult with a disability, has an “incident.” In our world, it’s fracturing, since that’s what happens with brittle bones, but for other people with disabilities, it might be other incidents; wheelchair breaks down; fever spikes; onset of seizures. The details differ, but how we manage life around those details is pretty constant. If you’ll stick around for the story, and follow this space for a couple of days, you might learn to feel more than sympathy or pity; you might get a greater understanding of what it’s like to be a person with a disability. For a little while, just don’t look away.

Continue reading