Disability Thought Of The Week: Patience

Disability Thought Of The Week on a yellow legal pad background

Have you ever heard or read a quote that perfectly articulates an important thought or idea, even though the quote itself is totally unrelated? That happened to me yesterday while I was watching an episode of Buffy the Vampire Slayer:

“I was being patient, but it took too long.”

— Anya, Buffy The Vampire Slayer, Season 6, Episode 1

Still image of the character Anya from Buffy The Vampire Slayer

The joke is that Anya is a former demon who is new to being human, and therefore doesn’t know how to be polite. She has these powerful needs and wants, but few restraints on her behavior. So people are always telling her to calm down or be patient. The idea inside of that joke is that Anya is, accidentally, often very sensible and direct, where her “normal” friends are sometimes overly concerned with etiquette and caution.

By one standard, Anya is tactless and childish. By another, she is refreshingly logical and direct.

I instantly thought of how disabled people feel about being patient, especially on the issue of accessibility. As thousands of disability activists have said over the last several years, the Americans with Disabilities Act is not a new law. It hasn’t been any kind of "new" for at least a decade. Yet, we are still told, or it is heavily implied, that the proper, reasonable attitude we should have about our full legal rights being respected is patience. It takes time to comply. It takes time to change attitudes. It takes time to retrofit old buildings and neighborhoods.

The ADA passed in 1990. We have been patient, as Anya would say. But it has taken too long.

P.S.: Here's another "Buffy" themed blog post from 2015: Disabled Youth & Vampire Slayers.

Throwback Thursday

Cartoon picture of a white dog with glasses next to a red-haired boy with glasses, both in front of a wall-sized computer

Two years ago in Disability Thinking: For Senate.

So, Representative Duckworth won. She is now Senator Tammy Duckworth. Her election was one of the few bright spots for me in an otherwise demoralizing 2016 Election Night.

It's too early to tell what kind of profile Sen. Duckworth will develop in the Senate, but because she's disabled and so am I, she feels like one of my Senators. And on the subject of disabled people in public office, two things:

1. In the survey we conducted for #CripTheVote last Spring, the top disability priority for the 508 respondents was getting more disabled people elected and appointed at all levels of government.

2. This Sunday #CripTheVote will host a Twitter Chat on Disabled People in Public Service ... April 2, at 9 PM Eastern Time.

Throwback Thursday

Picture of cartoon characters Mr. Peabody, a white dog with glasses, and Sherman, a boy with red hair and glasses, standing in front of a wall-sized computer machine

Three years ago in Disability Thinking ...

Two Down, One To Go
February 9, 2014

Three years ago, it looked like we might be seeing a boom in disability on TV. Three shows premiered in the same season with important disabled characters ... two half-hour comedies and one hour-long police procedural, which was also a remake of a classic series from the '60s and '70s that featured an iconic disabled character. One of the shows, The Michael J. Fox Show, even had a disabled character played by an actor with the actual disability. Growing Up Fischer had an exceptionally talented and well-liked cast, plus some innovative storytelling techniques. The shows all looked promising.

All three series failed though, and they were all so "meh" that I don't remember any anger or mourning in the disability community.

The next big news for disability on TV came a year later. It was American Horror Story, with the season titled Freak Show, about an ensemble of literal early 20th century "freaks"... that is, disabled, physically deformed people ... in a traveling show. "Freak Show" was divisive just within the disability community, even before the first episode aired. Proponents pointed out that some of the disabled characters were played by actors with the actual disabilities, and argued that depicting the real-life historical abuses of "freak shows" could provide a platform for promoting more progressive messages about disability. Detractors countered that no positive "messages" imaginable could overcome the ugly stigma and visceral trauma of watching a show about the cruel exploitation of "freaks."

As it turned out, "Freak Show" was something of a dud, too. It was neither as exploitative as feared, nor as revolutionary as hoped. It had moments of both horror and insight, but the show itself was too flawed in other ways to boost any really positive or even interesting ideas about disability.

I guess that's one of the key things about disability on TV. No matter how "good" the disabled characters and disability stories are, if the show itself is weak, it won't work, and it won't matter.

Today, we have Speechless, a character-driven, family-based comedy that is largely, though not exclusively focused on a nonverbal teenage boy who uses a wheelchair. The show has done a lot to get the disability details right ... including casting a disabled actor to portray the disabled teen ... and the disability community mostly loves the show. But the reason that even matters is that the show is good in general, and it is broadly popular.

I wonder if the creators of Speechless studied the failed disability shows of 2013/14 to identify what worked, and be alerted to what didn't. If so, those disappointments appear to have been worth it.

Throwback Thursday

Picture of cartoon characters Mr. Peabody (a white dog wearing glasses), and Sherman, a rad haired white boy wearing glasses. They are standing in front of the "Wayback Machine".

I haven't done one of these in awhile. Here is a short post I wrote two years ago today:

Best Article On The ABLE Act
December 22, 2014

The ABLE Act still prompts head-scratching, and I have yet to meet anyone or read anything by a person who is using it. It still seems like a good thing, and slow implementation of these kinds of things is pretty standard. But I also suspect that most disabled people and affected families don't really know what it is or how it's actually supposed to work, apart from a core group of relatively affluent families who are already pretty familiar with setting up tax-free savings accounts.

Now there's apparently a new law just passed that allows disabled people to set up their own Special Needs Trusts, rather than depending on parents or guardians to do it for them. Like the ABLE Act, Special Needs Trusts are meant to help disabled people accumulate and set aside reserve funds for disability-related needs, without affecting eligibility for basic support benefits like SSI and Medicaid. So, this, too, is a good thing, especially since the new provision is specifically meant to underscore that these things aren't just for caregiving families, they're for self-directing disabled adults, too.

Overhanging all of these helpful steps towards good sense and financial stability, there's a much simpler kind of fix ... simply push back the time limits, earnings limits, or both, by a whole lot. Make it so disabled people don't even start losing benefits they are otherwise qualified for until they're making, like, $70,000 per year. Or, remove the time and income limits completely, and add an income surtax that kicks in at higher incomes for disabled people who use government support and health care. Because any of us could earn big bucks one year, be unemployable next year, and be working half time or a few hours a week the year after that, based on the ups and downs of our disabilities, and other factors. Let us keep the stability of benefits while we build on that base ... and if we do really well, make us pay some back through the IRS, but keep the eligibility going.

Anyway, that's what I would do, if I was in charge of everything.

Throwback Thursday: Bullying

Cartoon picture of Mr. Peabody, white dog with glasses, and Sherman, a boy with red hair and glasses, in front of "The Wayback Machine"

I promise, I'll get back to at least semi regular blog posts soon ... probably after the Election. In the meantime, here's a post from two years ago today:

Bullying
October 27, 2014

I think I have a little more insight into why I didn't suffer any (much?) bullying in school. I think it had something to do with being agreeable and undemanding 99% of the time. That sounds like a humble brag, and even a bit of victim blaming of people who do experience bullying. But being easygoing all the time as a disabled kid has a price, too. I'm not sure I would trade the experience for a different path, but I probably sacrificed a bit of integrity and maybe some opportunities never pursued so I could stay "a pleasure to have in class."

As for the school, I give it due credit ... especially my fellow students. On the other hand, it's probably easier to be inclusive when the person in question doesn't actually pose much more than a visual challenge.

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: A Legal Victory For Choice
August 4, 2013

I wonder how Jenny is doing now? I wonder if she’s still living with the couple who were supportive of her. I wonder if her parents have gotten used to Jenny’s new life, or if they’re still bitter and afraid that something terrible will happen to her. I wonder how many more people like Jenny have exercised greater autonomy thanks to Jenny’s advocacy and the court’s decision.

Two years ago in Disability Thinking: Binge Watch: Classic Ironside
August 4, 2014

One of these days I probably will shut up about Ironside. It’s still one of my favorite TV depictions of disability though, and I still think it’s under-appreciated inside disability culture. That’s understandable. It’s a very old show, at least 3 generations back from the current generation of TV shows. And it looks it. Pretty much everything about it, from the formulaic plots, visual style, and strained efforts to keep everything light and frothy, smack of the kind of TV everyone’s grandparents enjoyed. It also has a fatal flaw in today’s standards of progressive TV. Chief Ironside is a disabled character played by a non-disabled actor. Still, Ironside is remarkable for how it normalized a pretty significant disability, and made it work in a decidedly mainstream show that was extremely popular in its day. At the same time, it occasionally dug into the deeper issues of disability in ways that very few current TV shows or movies ever manage to do. For the umpteenth time, I recommend watching Light At The End Of The Journey. It shows how Ironside’s disability is both a minor visual detail and, on occasion, an absolutely meaningful plot point.

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

Two years ago in Disability Thinking: The Guaranteed Income Idea
July 28, 2014

This idea just keeps getting more credible and attractive, especially for disabled people. I would suggest something more like $1,500 - $1,800 per month, along with free health insurance that covers any needed medications, equipment, and home care. This would be regardless of past or current employment status, income, or savings. As some peoples' income got higher, of course, more and more of it would be paid back in income taxes, but there would be no formal time or dollar amount cutoff. It’s hard to be objective about this, but it really does sound both practical and ethically sound. Maybe we should think about getting a detailed proposal like this put together in time for the 2020 elections.

One year ago in Disability Thinking: Keep Your Eyes On The UK
July 28, 2015

On the other hand … does it make sense to talk about raising benefits when drastically cutting them is entirely on the table? I am relieved that UK-style austerity hasn’t really been much of an issue in the U.S. elections, especially in the disability sphere. It could still come up of course. I could see Donald Trump scapegoating “scroungers” and people with “fake” disabilities. But I think it’s just as likely he will at some point support the vague idea of an increase in benefits for disabled people, without any details at all. As long as he gets to define who he counts as disabled … the good, sympathetic, hard-working disabled, not the weirdos and activists … I think Trump would find it rather easy to promise some goodies to make up for his mocking incident. I’m not saying it's likely, and I wouldn't bet on it, but it could happen.

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 Zimmerman Verdict and Ableism
July 14, 2013

Holy cow! My naïveté on whether ableism can lead to police killing disabled people is stunning and embarrassing. That was only three years ago. However, I still think the rest of my analysis holds. One way or another, it boils down to the fact that disabled people are allowed a much narrower range of behaviors and reactions that are considered “normal.” Most often, this leads to fairly ordinary kinds of personal conflicts and annoyances, but in certain situations it can lead to much bigger consequences, including death. I’m not suggesting we should adopt a siege mentality. Just that we should never forget that some of us have less compensating social privilege to shield us, and that it doesn’t really take much for any of us to be in real danger, often when we can’t reasonably anticipate it.

Two years ago in Disability Thinking: “Freakshow” Trailer
July 14, 2014

American Horror Story: Freakshow turned out to be kind of a dud, in my opinion. It had some good things going for it, from a disability standpoint. But it also had a ton of plain exploitation and ridiculous disability camp. Ultimately, it was kind of a wash in terms of positive or negative disability depiction, because the show overall wasn’t very good … even in comparison with other American Horror Story seasons … so it had little impact, good or bad. The video I embedded two years ago isn’t active anymore, so I’ll embed another here, so you can get a taste of why for a short while, the show was a hot and divisive topic in Disability Culture. Also, check out the Disability.TV Podcast episode on AHS: Freakshow.

One year ago in Disability Thinking: It’s Refreshing
July 14, 2015

I have two notes to add. First, the article I originally linked specifically talks about ADA lawsuits, and does so approvingly, which is rare. Usually news coverage of ADA lawsuits assumes that most of them are frivolous, pushed by greedy lawyers and unhinged lone-wolf activists. Mr. Pfeffer offers here a strong defense of lawsuits as essential for making the ADA work. Second, while we should still value occasional validating pieces like this by non-disabled writers, we should also acknowledge that there’s something rather galling about the fact that non-disabled writers about disability still are granted more credibility than actual disabled people writing about disability. It’s another sign of how deeply ableism is woven into the public consciousness.

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: My Disabilities

I remember thinking it was harder than I expected to explain my disabilities succinctly but fully. I like how the description turned out though, and I’ve used several times in different situations where I had to explain how my disabilities are for me, day to day. The main difference now is that I have more pain than I did three years ago. It’s not a huge problem, but I kind of have to think about it every day.

Two years ago in Disability Thinking: Disability Visibility Project

The Disability Visibility Project is still going strong, especially the website and Facebook Page. Both are still essential sites for anyone who wants to engage with disability issues and culture. And as you may know, I’ve been involved with the proprietor, Alice Wong, and Gregg Beratan, in the development of #CripTheVote. So far it’s been the most productive, satisfying partnership I’ve ever experienced.

A year ago in Disability Thinking: Stuff That Worries Me

I am tempted to take up again this idea of a series of posts on what worries or bothers me within the disability issues and culture communities. The trick is to be sincere and humble about it, and not let the exercise devolve into tone policing, concern trolling, or any sort of ‘splaining. I think that trickiness is why a year later, this “series” still has only one post.

Independence Day

Thematic illustration of a blue stick figure hanging from a marionette controller, with a pair of scissors cutting the strings

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.