Weekly Reading List

Picture of two shelves of multicolored books

Recent disability reading …

#CripTheVote and Dante: Priorities USA Cuts a New Ad
David Perry, How Did We Get Into This Mess? - June 24, 2016

I agree with David. This ad is a fantastic accompaniment to the first one. Just to reiterate the issue … One of the most insidious ways disabled people’s personhood and agency are undermined is that so often when we are depicted or discussed in popular media, we are literally mediated by non-disabled people. They speak for us. They represent us. They explain us to the viewers. We typically don’t get the chance to do that for ourselves. And that is so “normal” that it’s barely even noticed. So it really is a sign of progress if people crafting a disability-related campaign ad think to make a disabled person the ad’s voice and point of view. It probably sounds all academic and literary, and maybe a little PC, to worry about whether we are the “subjects” or “objects” in media depictions of disability, but it really is so much more than an abstract difference. It’s a seemingly minor difference that makes a surprisingly huge impact. We need more authors, screenwriters, directors, and yes, political consultants who are conscious of the difference and deliberate about their choices.

Life in long-term hospital "unbearable": Montreal man with ALS
Charlie Fidelman, The Montreal Gazette - June 27, 2016

“Former Montreal landscape architect Archie Rolland says he would rather end his life than live in pain at a long-term care facility in Lachine that he says is treating him inhumanely … It’s not the illness that’s killing him, Rolland said in a series of emails with the Montreal Gazette. He’s tired of fighting for compassionate care.”

This, in one sentence, explains why legalizing assisted suicide is a terrible idea. Here is a man with two things messing up his life. 1. He has Lou Gehrig’s Disease, which is gradually imposing an escalating and all-encompassing disabilities. This is the reason most assisted suicide supporters focus on when they say that people like Mr. Rolland should be able choose to end their own lives. It’s the reason it is now legal for him to do so in Canada, thanks in part to a new, famously progressive Liberal government. However, a huge part of his misery is because, 2. Rolland is stuck in a substandard long-term care “hospital,” where he is being treated abominably. Mr. Rolland’s situation feels to him like a single predicament, and probably looks that way to people reading the Gazette article. But it’s really two separate problems, one of which could be largely ameliorated by changing the structural care policy problems at the root of the second. Mr. Rolland says he’s going to discharge himself from the hospital and move into his summer cottage, where he plans to die. But what if the Quebec government took the money they now spend to keep him in this hell hole and instead gave it to him to pay for home care aides to take care of him in his cottage? It’s probably not quite that simple or seamless. It might cost more money. Yet, nobody, not even Mr. Rolland, seems to be able to even formulate an alternative, except to wish for more “compassion,” better trained staff, and a choice of institutions to live in. Why do so few people in situations like this not lobby for care at home. I understand, somewhat, the institutional inertia. What baffles me is that more disabled people and their families don’t look to anything better than a nicer, kinder cage.

The disabled community still waits for our 1960s sexual revolution
Allan Hennessy, The Guardian - June 26, 2016

The digression into talking about the CRPD is a bit distracting, but this is a pretty good summary of the taboos and ableism surrounding disabled people and sex. I have to admit that it’s something I’m just really becoming aware of. Although my sexual history is quite dull and not what it could be, I don’t think I ever felt that was because of taboos of any kind. But that’s just me, and I’ve probably been affected by those taboos and ableism more than I’m fully aware of. It’s an interesting and complex topic I need to learn more about. I am glad, by the way, that the article mentions abuse as one of the negative factors for disabled people, since it seems to me that some of the current taboos about sex and disability are related to fear of disabled people being sexually abused.

My Whole Life I’ve Been Told I Wasn’t Attractive, Smart, or Had a Life Worth Living
Dominick Evans - June 24, 2016

One of the hardest things to get used to when you get deeper into Disability Culture, especially if you come from a relatively privileged background, is just how nasty life can be when you’re growing up disabled. There’s this conventional wisdom that ableism is benign … quite wrong, but not mean or ugly. For many disabled people, that is true. It has been largely true for me in my life, for which I am extremely grateful. However, it’s important to acknowledge that some of us have been subject to a degree and frequency of outright, almost cartoonish cruelty that most people would literally find hard to believe. C’mon, it can’t have been that bad? Can it? Well, yes it can. The “devaluation” of disabled people isn’t just theoretical or broadly cultural. Sometimes it is very deliberate and individually targeted, too.

Finding Dory, Disability Culture, And Collective Access
Alice Wong, Disability Visibility Project - June 27, 2016

Damn. Now I guess I’ve got to go see “Finding Dory.” I especially appreciate how Alice talks about the bad things that happen in the movie and the negative attitudes about disability the film portrays. I think sometimes we forget that vividly depicting ableism can be a helpful thing, even when it is also hurtful in the moment. Bad stuff on screen is sometimes just plain bad, but not always, and not always with all audiences. "Me Before You" isn't terrible because Will kills himself. It's because his suicide is depicted sympathetically at worst, at best neutrally. I probably shouldn’t comment more until I see "Finding Dory" for myself, and probably "Finding Nemo," too. Stay tuned, maybe.