Independence Day

I was going to try writing something profound about the U.S. Independence Day and the idea of “independence” in the context of disability. But, I figured I should check to see what I’ve written already on past July Fourths. As it turns out, I wrote two pretty good pieces making this obvious connection. Since I still agree with them, I’ll just post them here, add a few comments, and leave it at that.

Independence
July 4, 2013

Discussions of disability activism have shifted quite a bit since my early days in the movement. We argue more over policy specifics and social identity now than we used to. I also think we are less optimistic than we once were about the power of simple “awareness” to bring about positive change in disabled peoples’ lives. However, among people with disabilities who are not involved in the disability community, or who are just taking their first “steps” into it, this very particular concept of independence is still absolutely key. That has not changed. It’s still almost impossible to move forward, positively, as a disabled person unless you stop clinging to the idea of physical independence and embrace this more conceptual … and meaningful … independence that’s about choice and personal agency.

Independence Checklist
July 4, 2014

A lot of traditional agencies have, finally, left medical, institutional, custodial models behind. Unfortunately, many others have simply gotten more creative about promoting systems whose purpose is still to manage and regulate disabled people’s lives in the most convenient ways possible for those running the programs. So, a checklist like this one is still extremely useful for stripping off the shiny candy coating that now pretties up so many fundamentally unchanged disability programs and facilities. Independence isn’t about choosing what color of socks to wear, whether to go bowling or to a movie, or whether to have chicken or beef for dinner. It is about deciding who you live with, (maybe nobody!), regulating your own space, and being responsible for yourself, even if you need assistance, (maybe lots of it!), to get through each day.

Weekly Wrap-Up

This time around, about two-weeks’ worth of Disability Thinking, with a blogging break in between …

Weekly Reading List
June, 20, 2016

Disability YouTubers
June 21, 2016

Meet Mickey Abbott
June 22, 2016

Throwback Thursday
June 23, 2016

Weekend Blogging Break
June 24, 2016

Weekly Reading List
June 27, 2016

Blog In Progress: A Third Model of Disability?
June 28, 2016

Throwback Thursday
June 30, 2016

Disability Blogger Linkup
July 1, 2016

Disability Blogger Link-Up

Take a moment this holiday weekend to share and read some great disability writing.

If you’re new here, the idea is to collect lots of really good, interesting pieces of writing on disability topics, for the most part by people with disabilities. I post a linkup every other weekend, and each runs from late morning on Friday and closes at Midnight on Sunday. Once a linkup is closed, you can’t post to it anymore, but the links all stay active, essentially forever. If you miss one linkup, there will be a new one in a couple of weeks.

If you like, browse all the past Disability Blogger Link-Ups here.

As always, to make the links easier for visitors to browse, in the “Your name” blank, please type the title of the article you are posting. In the "Your URL" blank, paste the URL address of the item. Like this:

Name = Title of your article.
Your URL = Link to your article.

Then click the "Enter" button. That's it! If you need to fix or delete a post you have made, send an email to apulrang@icloud.com.

This Link-Up will close at Midnight Eastern on Sunday. The next Disability Blogger Link-Up will start Friday, July 15, 2016.

Throwback Thursday

Mr. Peabody and Sherman, classic cartoon characters, in front of an elaborate wall of machinery, the "Wayback Machine" time machine. Mr. Peabody is a white dog with glasses, Sherman is a red haired boy with glasses

Three Years Ago in Disability Thinking: “The Onion” Nails It

Yesterday I sent a blog post to the Center for Disability Rights in which I explored varieties of really ugly ableism. One of them is the idea that disabled people are lavished with loads of help and special privileges that, by implication, other people envy and resent them for. This is sort of a minor version of that. It’s interesting to me that this is not something that really occurred to me three years ago when I read the “Onion” piece. Instead I focused on mixed feelings as a disabled person about when to use assistance and whether or not it makes me feel guilty. It’s a perfectly valid perspective. I often feel that way and so, I think, do most disabled people. But it’s also classic internalized ableism. No doubt others around us are hating us a little for our “sweet deal,” and instead of resisting that, we wonder, deep inside, whether they might be right. The other missing thing here? Airport assistance is rarely as generous and seamless as the satire assumes.

Two years ago in Disability Thinking: “Let Us Now Praise Famous Men”

I don’t have much to add to what I wrote in 2014. I will just say that in the last several months I have seen in even greater detail the gulf between the two worlds … almost two universes … of disability non-profits. The difference is that the more traditional, charity-model agencies and the newer, more activist-oriented organizations seem to be clashing more often and more deliberately. Where they used to bump into each other occasionally, almost by accident, they now seem to be choosing more carefully when to collaborate and when to take each other on over differences in philosophy and certain critical markers of policy. I think this is probably a good thing. Differences make a difference, and if they are significant, they are worth challenging and arguing over. I’m not saying I relish it or that I’m particularly good at it. I think it’s important though.

Blog In Progress: A Third Model of Disability?

Illustration of a white 3-d stick figure working on a series of multicolored gears, with "Work in Progress" in letters underneath

I got sidetracked today because my oxygen concentrator gave out and I had to get it replaced. I had hoped to post a full piece today about an idea that occurred to me last week while reading David Perry’s article on Pope Francis’ mass focused on people with disabilities. I am working on it though. It’s about the idea of adding a third “model” to the Medical Model and Social Model, which are two of the main ways we classify different ways of thinking about disability.

The third model would be called something like the Spiritual Model, and would help explain a view of disability that focuses on a sense of deeper meaning in disability … whether traditionally religious or a more secular philosophical or New Age / self-help view. It might even help account for "inspiration porn." So far, I’ve gotten far enough to describe the three models of disability thinking as three different kinds of questions:

1. The Medical Model asks, “What’s wrong with me, and how much of it can we fix?”

2. The Social Model asks, “What’s wrong with how society, government, and organizations deal with disability, and how can we fix them?”

and adding …

3. The Spiritual Model asks, “What does disability mean, spiritually and philosophically, to me and to the rest of society?”

I would be happy to include anyone else’s thoughts and comments or thoughts on this in a more thorough blog post to come. I’d especially appreciate knowing about other people who may have already written about something like this.

Add your comments and suggestions for further reading in the comments below.

Weekly Reading List

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.

Throwback Thursday

Mr. Peabody and Sherman, classic cartoon characters, in front of an elaborate wall of machinery, the "Wayback Machine" time machine. Mr. Peabody is a white dog with glasses, Sherman is a red haired boy with glasses

Most Thursdays I post whatever I find here at Disability Thinking from the same date one, two, or three years back. This week, all I found was skipped days and a "Housekeeping" post about changes in the site design. So instead, I went looking for something Historical with a capital "H" to post about.

Since we are neck deep in a U.S. General Election campaign, and seeing as how I've been thinking A LOT about the intersection and overlap of disability culture, disability activism, and politics through the #CripTheVote campaign ... I decided to go looking for some good video to share about our one indisputably, really significantly physically disabled President, Franklin D. Roosevelt.

Black and white photo of President Franklin Roosevelt sitting in a wheelchair on a patio, talking to a young girl while holding a small dog in his lap

I realize that other Presidents probably fit the definition of disability we generally use today. President Lincoln pretty clearly had recurrent depression. Woodrow Wilson had a stroke well into his Presidency, although he's not perhaps the most empowering example as it pretty much meant he was an absentee President for quite some time. And there are probably others that were hard of hearing, had poor eyesight, or were, to use an archaic term, a bit "lame" while in office.

Franklin Roosevelt, on the other hand, was almost entirely paralyzed from the waist down as a result of polio. He never walked a step without help after contracting Polio in 1921. He used a wheelchair every day, until the day he died, partway into his fourth Presidential term.

If you're reading this blog, of course, you probably know all this. You might also counter that while FDR was disabled, he didn't identify as disabled, at least not publicly. In fact, conventional wisdom is that he succeeded in politics precisely because he deliberately hid his disability from the general public. By today's standards of Disability Culture, that could be viewed as sort of disreputable. FDR "triumphed over his disability" partly by surrendering to or cutting a deal with ableism. I think there's real truth to that.

I also think it's a lot more complicated. For one thing, based on a few books I've read about Roosevelt, and things my Mom told me about growing up during the Roosevelt years, it seems like Roosevelt and the public had a kind of mutual pact to sort of know about his disability and yet not acknowledge it. I'm sure many, if not most Americans had no idea, but Roosevelt was a famous up-and-coming politician before his Polio attack. He ran for Vice President before he had Polio. Anyone at all tuned in to politics knew who he was. And when a few years after his known illness, he gave the speech nominating Al Smith at the 1924 Democratic Convention, he got gasps and wild cheers exactly because everyone saw it as a stunning comeback from "crippling" illness. Crucially, at least some people there had to notice that he didn't bound up the stairs to the podium, or walk briskly down a rope line shaking hands afterwards. He stood, stiffly, helped into position by his sons, and as he spoke, he used unusually animated head gestures to substitute for the usual hand-waving, because he had to hold tight to the podium just to stay upright.

When I read James Tobin's account of this speech in his book The Man He Became, I was inspired. There’s no other word for it. Whether or not Roosevelt hid his disability, whether or not he ever "identified as disabled" the way we talk about it today, whether or not he aided and abetted ableism instead of challenging it ... Franklin Roosevelt was a bad-ass disabled man who made nonsense of ableism by his very example.

And while we're at it, he was incredibly practical and very sophisticated about how he processed his own disability. Without having names for them, he really did blend aspects of what today we would call the Medical Model and Social Model of disability. This enabled him to succeed in the biggest possible way in politics without having to first be “cured” of his disability, even though he, personally, never totally gave up on that goal. He decided quite consciously that his higher priority was politics, so he put the cure he did long for on a back burner basically for the remainder of his very eventful and consequential life. It’s what millions of people disabled later in life still do today.

I can’t find film of FDR’s 1924 “comeback” speech, but here is his nomination speech at the 1932 Democratic Convention:

Meet Mickey Abbott

I am preparing for the next episode of the Disability.TV Podcast, which will look at the recurring Seinfeld character, Mickey Abbott. I’d love to interview someone about the character, whether you like the portrayal of this Little Person character or not. He’s one of my personal favorites, but I’m open to other interpretations.

Here is a montage of Mickey Abbott scenes:

You can watch Seinfeld here, at Hulu.com.

I also recommend listening to this Seincast Podcast interview with the actor Danny Woodburn, who portrayed Mickey Abbott on Seinfeld.

If you have comments about Mickey Abbott, you can leave them below in the comments, and I’ll read them on my podcast. If you want to be my guest for the podcast, just shoot me an email, or hit me up on Twitter, @AndrewPulrang.

Disability YouTubers

Last week, I asked readers to suggest some blogs and YouTube vlogs that I should add to the Disability Thinking Links page. The post got a lot of suggestions in the comments, and today I want to highlight some YouTube vlogs that I am going to add to the Links page. For each one, I have included a link to the channel and selected a video to embed.

Here we go!

Robyn Lambaird

Robyn is a young British woman with Cerebral Palsy, who is an athlete and posts videos on a variety of disability related and other topics. In this video, she discusses one of the foundational idea of disability rights and activism, the relationship between Equality and Fairness.

Zach Anner

Zach’s videos are fun and funny. Many of them are about physical fitness and “working out”, and some are on travel and a variety of other topics. He also posts a number of videos on specific disability-related topics, including this terrific answer to a subscriber’s question about how people with disabilities go to the bathroom.

Tuesdays with Liz: Disability Policy for All

This channel comes from the AUCD, the Association of University Centers on Disability, an organization that does a lot of work in disability activism, mostly related to accessibility and accommodation of college students with disabilities. “Tuesdays with Liz: Disability Policy for All” is kind of my dream channel, because it’s a series of interviews all about disability policy … how the everyday needs and issues of living with disabilities can be addressed through better disability-related policies, practices, and laws. It’s a great way for people new to disability activism to get the lay of the land. Here’s a fantastic interview with Maria Town, who works at the White House specifically on disability issues.

Annie Elainey

Annie produces amazing videos on a really wide variety of themes, most of which have something to do with being disabled. I put this one last on the list because in a way, if you want to get started with disability on YouTube, you could just watch this video, titled “20 Disabled YouTubers.” I haven’t looked at all of her recommendations yet, but as you can see, there’s some overlap with the sites recommended to me last week

Thank you Gregg Beratan and The Affliction Fiction for suggesting these vlogs! In a few days I’ll go through some of the recommended blogs before adding them to the Disability Thinking Links page.