A beautiful afternoon

A short statured adult in the distance, on a bench, taking a photo on a cell phone of an abstract silver and orange painting. Walker nearby.
Frances at the Michael Snow exhibit

In the beginning of 2020, going to the art gallery would have meant finding a Saturday with a couple of free hours and – going.

Now it’s a lot more complicated.

We’ve wanted to go since it reopened in, I think, July? And kept saying: this week, if you’re feeling up to it; this Saturday, if you’re not in too much pain; maybe next weekend, if this flare eases up. And it just never happened. Every available Saturday was instead spent at home in pain, or maybe with a quick trip to the local Indigo, with its lovely accessible parking spot right near a fantastic curb cut and an automatic door with no lip, enough space to walk around inside, and a ramp.

Yes, we have local independent bookstores that are beautiful and I love to support them; but the accessible parking spots are nowhere close by, so we have to budget for the pain of the walk there and back, not to mention navigating narrow aisles, and maybe no automatic door. Indigo hurts less, so Indigo is where we go.

A diorama by Sylvia Nickerson; paper cut-out 3D skyscrapers in teh centre, canvas tent city to the left with paper figurines inside, above a mobile of colourful clouds, people, airplane, and words such as "I'm sorry" and "us."
Sylvia Nickerson

Even with the pain medications, even with the steroid injections, even with physio for years, every day is a struggle with pain that sometimes eases up but never completely goes away. Lately physio walks have been five minutes each way, and every second of those five minutes is a push. We might get half a block. Cracks in the sidewalk bring a cry of pain. A bumpy curb cut is a barrier requiring effort to navigate—picking the walker up, putting it down, picking the walker up again, putting it down again. Any kind of slope is a challenge. Even a “code” slope of 1” change in height per foot in length. Frances works harder to put one foot in front of the other than anyone else I know. We budget those steps, carefully. In-person school days requiring saving up the day before, and recovery afterwards. 

She had a couple of good days. This morning we took stock; pain was low, energy was high. We went to the art gallery. We chose an accessible parking spot as close to the doors as we could get, asked about the elevator in advance, planned our route to minimize retracing steps. We went slow. We stopped and sat down when needed. And we checked in frequently to make sure that she had enough left in the pain budget to get back to the car. We might have cut it a bit fine; getting back to the car was hard, but Frances loves the Bosch Bus and didn’t want to tear herself away.

I don’t talk about that much, maybe not as often as I should. Because look, we grew up in the same world, the same culture, and I know how you think. You don’t believe that needing to budget dollars means a life is worthless, but budgeting pain or steps isn’t the same to you, at all. This would fit into the slot in your head that says “disabled lives aren’t worth living,” that wants to find inspiration, or a cure, or something for YOU in this story. But it’s not there. Frances’s life isn’t for you.

Meanwhile, if I talk about the beautiful afternoon we had—budgeted steps and all—about how much we loved the art, the conversations about brush stroke and texture and colour and composition and line and meaning—you’ll decide everything is fine, after all, and no more accommodations need to be made. That there is no problem to solve. Never mind that we’re in this position largely because a doctor decided she hadn’t been in pain for enough years to earn hips that work, or that he didn’t believe her reports of pain, or that other doctors got so carried away with the need for diagnosis that it took a threat to go to the press before they started to work on her quality of life, or that yet other doctors were so convinced that her height was a problem that needed solving that they began acting directly against the advice of other medical specialists to find some answer that would make her taller. (Frances is the tallest person in the world with her specific diagnosis.) And never mind the rounded curb cuts that no wheels can manage, or the uneven sidewalks, or the thousand other little barriers. 

So I talk about the beautiful time we had, mostly, and not about the pain, or the budgeting. Between the rock of confirming your preconceptions about disability and the hard place of enabling your ignorance, I’ve chosen the hard place.

Short statured person wearing a yellow face mask with a bee on it; short hair; using a walker. Standing in front of a life-size diorama of human figures covered in colourful confetti

It’s common for activists —against racism, against sexism, against transphobia, homophobia, climate change– to be very free about demanding that others be vocal about the issue in question. Silence is violence, etc. 

And the most I’ve seen most do about discrimination against disabled people is add “and the disabled!” to the end of the list of oppressed groups to perform wokeness. Yep, they’re kind of peripherally aware of ableism, and generically support accessibility in a hazy mostly ignorant sort of way, but they’ve never done a single fucking thing about it. Even friends will tell me they love my kid, but seem totally on board with a world that keeps her in pain and in my living room.

I’m kind of tired of being asked to build a better future that my kid won’t be able to live in. I’m done, I think. You go on and build whatever kinds of movements or futures or causes you want to. If you haven’t figured out how people like Frances fit into it, I’m not interested.

At any rate, we had a beautiful afternoon. The art was gorgeous. Well worth budgeting steps for. The curb cuts were a thing of beauty. The automatic doors made our day. The low padded benches everywhere made our stops easy and comfortable. There’s an airplane now at the Bosch Bus, and little parachuters. Sylvia Nickerson’s work was amazing, so much colour and passion and life. We’re so happy we got to see Michael Snow’s art and appreciate in person how wide-ranging and versatile he is. Thank god for wide open rooms and even floors. I think if the art gallery figured it out, you can too.

7 thoughts on “A beautiful afternoon

  1. Doctors actually said “she hadn’t been in pain for enough years to earn hips that work, or that he didn’t believe her reports of pain” is completely disgusting to me. When those of us who have surgery to fix an injury have the promise of getting back to 100% or very close to it have not concept of what it might be like to hope to simply have an improvement on the quality of life. I have had a few surgeries, however, I knew I would be back at it again at some point and I could fight through the pain until it was “normal” again. A physician should not be deciding whether a person with a disability has or has not been in pain long enough to warrant surgery and rather should put the individual in line (unfortunately there are lines) for whatever is required. I waited three years for shoulder surgery and my main inconvenience was that the joint was a little sloppy and would sort of come out of the socket at times not that I my life was a daily extreme struggle. I hope your daughter’s situation on the road to surgery and hopefully a better quality of life.

    1. Oh yeah. The surgeon we saw in January thought we should tough it out for “maybe another 20 years!” because “she still has some cartilage left.” And therefore, since he didn’t see why she should be in so much pain on the x-rays, she wasn’t, so we should not only indefinitely postpone surgery but also stop using the walker and ankle braces.

      I totally agree with you. It is disgusting and shouldn’t happen.

      1. So, does this mean that surgery is not scheduled or being considered or you managed to change the minds of the medical profession with some threats of going to the media?

        Your daughter matters and she should get her treatment as soon as possible. It is health care situations like these that really make me wonder what the heck is going on in our system.

      2. It means we’ve talked to a lot of doctors, mostly. Some have been great, and some have not.

        Nothing is scheduled at the moment but that’s because of covid. Last we heard something was meant to happen in November, and we still have our fingers crossed that this will happen.

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