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.

Disability Thought Of The Week: Awareness Kinda Sucks

Disability Thought Of The Week on a yellow legal pad background

I think one of the central questions of disability culture is:

Why am I, as a disabled person, better off being more knowledgeable about disability history, more aware of the struggles of all kinds of disabled people, and more cognizant of the power and reach of ableism? Why is it better that I am the way I am now ... constantly aggravated and worried by disability issues ... instead of the way I used to be ... moderately bummed about my "limitations" but basically fine? I am by any measure a lot angrier than I used to be before I got deep into disability activism and culture. I mean, I’m not angry all the time ... though I know some of us are. I’m really not the angry person type. I enjoy my life. Still, I used to not be angry at all about things related to disability that I am definitely angry or at least disturbed about now. So how is that better for me?

Put another way, if you’re disabled, and your life is going fairly okay ... fair to middling ,,, what’s your incentive to get involved in disability issues and expose yourself to all these upsetting things?

I think there are some sensible answers to this, but that’s for another week. To be continued ...

Disability Thought Of The Week: The Straw Thing

Disability Thought Of The Week on a yellow legal pad background

I have a confession. When I first heard about the movement to ban plastic straws, and the anger of disabled people about it, I thought the whole thing was overblown. Although I have disabilities, I have only once or twice in my life needed to use a straw to get a drink. And that lack of immediate experience I think contributed to my initial belief that while it was a valid conflict and straws shouldn’t be so quickly and thoroughly banned, there was far too much anger about it on both sides.. In a way, I think there still is, because the thing should be easily resolved.

- The straw ban people should probably shift into a public persuasion campaign encouraging people who don’t need straws to request no straws when they order drinks at bars and restaurants.

- The disability community should probably accept something like that as a win, and maybe stop claiming, as a few of us have, that the straw ban is happening because non-disabled people hate disabled people.

Note: My own interpretation is that straw bans are happening because of the usual obliviousness and neglect of disabled people and disability concerns that occurs when non-disabled people get all excited about a brilliant plan ... whether it's a social justice movement, a conference, or a building. Indifference like this may seem to activists like a weaker, less motivating explanation than hatred, but not to me. Indifference towards disabled people is terrifying, and enormously harmful.

If we can secure the continued existence and availability of plastic straws for all who need them, then maybe we can also stop getting worked up over these small-bore personal environmental initiatives and organize instead around some serious push-back on the Trump Administration’s environmental policies.

Meanwhile, the disability community can use this as an example of why movements and initiatives that seem to have nothing to do with disability should always consider the possible disability angles on what they are doing, and get serious about consulting the disability community. That means more than just asking that one disabled guy you happen to know. It means reaching out to several different disability organizations that have the capacity to provide both personal and technical feedback. It also means that those organizations need to be ready to provide that kind of feedback on a moment’s notice, and mobilize in a reasonable but also forceful way to deal with things like the straw ban movement.

That would be great. And some of it might actually be how it turns out in this case, since it seems to me like the disability community is actually being heard on this, or at least having a voice, much faster and in more mainstream venues than I would have guessed just a few weeks ago. The problem is now being covered in “the press,” and not dismissively or as a curiosity.

The problem is that there’s almost nobody out there that I can see, other than a few disability bloggers, freelance writers, and tweeters, offering specific demands or compromise formulas to the environmental movement, municipalities, and companies like Starbucks. The only organized campaign I’m aware of is by Disabled In Action in New York City and the Brooklyn Center for Independence of the Disabled, which were planning to do a rally and press conference at a Starbucks store in the city today, but have at this point postponed because they are having possibly productive dialog with Starbucks management. I hope this bears some fruit.

For myself, I’m going to go to my local Starbucks this afternoon and talk to the manager there about the straw ban, and ask him to pass along to upper management the accessibility problem with banning plastic straws. I invite all my fellow “basic” disabled Starbucks goers to do the same.

Disability Thought Of The Week: More On Advocacy and Activism

Icon of a white silhouette head with a word cloud inside containing words associated with disability thinking, against a light blue background

I’m going to try to write a blog post later this week on something I have been thinking about a lot lately.

My thought, which I am trying to tease out and shape, is that what is usually called “self advocacy” and what is generally understood to be “disability activism” are of course related, but call for very different strategies. Approaches that can be smart, ethical, and effective for self-advocacy in your personal life are not always right or successful for larger-scale systemic advocacy on disability issues. And vice versa, maybe. I hinted at this in a post from last month, but I want to explore it in more depth, with more specifics.

I hope to have more to say on Friday, or maybe the weekend. In the meantime, feel free to use the comments to suggest examples.

Disability Thought Of The Week: Good Things Are Actually Bad

Icon of a white silhouette head with a word cloud inside containing words associated with disability thinking, against a light blue background

About 70% of disability activism involves trying to explain that things people think are good or nice for disabled people, (or at worst harmless), are actually bad.

For example:

  • Sympathy
  • Sharing photos and videos of inspirational disabled people
  • Non-disabled actors playing disabled characters
  • First responder registries of disabled people
  • Assisted living facilities
  • Nursing homes
  • Sheltered workshops

These are all things that most people think are good. In many cases, they don't think it. They just assume. It falls to us as disability activists to persuade them, essentially, that blue is actually red. Sometimes we have excellent arguments for this, but often we just have to insist that people take our word for it.

This is one of the built-in problems with disability activism; it’s inherently negative. It really has to be. But that's why it's so important for us to craft and push forward a “positive” agenda ... a set of things we affirmatively want.

Affordable Care Act Repeal

Light grey crosshatched background with black capital letters reading: ACA Repeal: Reasons & Consequences

There are two aspects of the disability community’s discussion about possible repeal of the Affordable Care Act that I think need more clarity. First is the enormous variety of reasons, good and bad, that people have for opposing the ACA. The second is what the actual consequences of repeal would be, (with or without replacement), for people with disabilities.

Over the weekend I did some brainstorming on these questions, which I want to share. I’m not going to go into depth on each item or observation. I just want these ideas out there.

First question: Why do people oppose the Affordable Care Act?

1. Philosophically & morally opposed to government involvement in another major industry -  healthcare.

2. Philosophically & morally opposed to the individual mandate to buy health insurance.

3. Believe good health insurance is a reward for hard work, not a universal right.

4. Want better health insurance, but don’t trust the government to handle it right.

5. Believe the ACA is too much of a gift to private insurance & pharma industries.

6. Want a single payer national health insurance program.

7. Unwilling to sacrifice any (more) of their own wealth to make things better for others.

8. Wealthier people who resent paying higher taxes on their excellent private health insurance plans.

9. Marginally poor / working class people who resent paying premiums on the ACA markets while others get Medicaid.

10. Blame rate increases on the ACA, even though rates almost always went up each year BEFORE the ACA.

11. Still associate the ACA with the website rollout debacle.

12. Unaware of how crucial the ACA has already become to tens of millions of people.

13. Don’t understand how popular parts of the ACA, like covering pre-existing conditions, depend on unpopular parts, like the individual mandate.

14. Some younger, healthier people would rather pay extra-low premiums for very bare-bones insurance plans that the ACA prohibited.

15. Confusion … some honest, some willful … between repealing the ACA and fixing its flaws.

16. Not clear on what the ACA is, what Obamacare is, or how health insurance even works. It’s all confusing and yuck!

17. Believe the ACA is a disaster because “everyone” says so.

18. Instinctively don’t believe that Trump or like-minded Republicans would really do anything truly harmful.

19. Believe that some are just panicking, while others stoke the panic for partisan political reasons.

20. Compelled to undo Obama’s signature accomplishment because … well … OBAMA.

Note that you don’t have to think all of these things at once to oppose the ACA. In fact, some of these reasons come from polar opposite ends of the usual political spectrum. And, it should go without saying that I, personally, do not subscribe to all or most of these reasons. It should go without saying, but I feel like I should say it anyway. I love "Obamacare." It enrages me that a few slightly different election outcomes in the Midwest and we would be discussing serious plans to make the ACA better. But, things are as they are, and instead we're on the defensive. So ...

Second question: What are the likely consequences for disabled people if the Affordable Care Act is repealed?

First of all, let’s talk about people dying. Saying "disabled people will die" probably sounds like politically motivated exaggeration to a lot of people who aren't familiar with disability issues. Disabled people WILL die of course, if the ACA is repealed. Even if is replaced, if it is replaced with any of the models Republicans in Congress are batting around now, people will die who wouldn't have died otherwise.

However, premature death isn't the only consequence of ACA repeal for disabled people. To mention just a few others:

1. Ending Medicaid expansion in states that opted to implement it would cause many medium-income disabled people to lose Medicaid eligibility.

2. Losing Medicaid means losing home care, which many disabled people absolutely must have in order to live independently and productively.

3. More disabled adults would have to continue living with parents, or go back to living with parents, curtailing their life development and exhausting families physically, emotionally, and financially. 

4. Many disabled people, deprived of work, unable to function independently due to loss of home care and other supports, would wind up in the care system of last resort: nursing homes ... paid for by Medicaid once every penny the person has is spent.

5. Most disabled people need and use health insurance all the time, not "just in case." We can’t shop around or risk going without in order to economize.

6. Chronic and delicate medical conditions would go untreated, or inadequately treated, resulting in more illness and disability, which is both traumatic and costly.

7. Lack of health insurance, and insecure health insurance, makes it much harder for disabled people to get and keep secure employment.

8. Disabled people who have jobs that include health insurance would be trapped by their jobs, unable to pursue better, more suitable employment opportunities.

9. Not being able to stay on parents' health insurance in the early 20s would make independence and starting strong careers much harder for disabled youth.

10. Disabled people who have managed to cultivate fulfilling life goals and dreams would be thrown back into sheer survival mode, to nobody’s benefit.

These consequences are serious enough, without even considering an actual death toll.

So, what does all of this suggest about how to confront ACA repeal? I don’t know. Maybe just that while we hammer away at the broad, blunt concept of ACA repeal, we also need to pick apart the opposition and take time to explain in detail what it all means specifically for disabled people.

Yes, it's annoying and offensive that we keep having to explain ourselves. But if ever there was a time to repeat the obvious to people who should already know, this is probably it.

Election Activities Update

Red white and blue Election 2016 sign

It’s time for another recap of what I’ve been doing around disability and the U.S. Elections, and what to expect between now and Election Day.

Blogging

Early in July, Stephanie Woodward, who does advocacy and supervises the election blogging at the Center for Disability Rights asked me and Emily Munson to compare notes on the Democratic and Republican party platforms, and write a joint post giving our perspectives on both as a Democrat (me), and a Republican (Emily). I think both of us were excited about it, but we found it surprisingly tricky. It’s not because we clashed politically, but more because collaborating at a distance, and with different schedules, is difficult. That said, I think we’re both happy with the result. It’s a bit longer than the usual blog, but probably worth a few extra minutes to read:

Emily & Andrew Discuss The Party Platforms
July 28, 2016

Between the Conventions and the more intense Fall campaign season, I decided to do a pair of blog posts in which I ask questions I am dying to ask the candidates, Donald Trump and Hillary Clinton … or that I wish someone would ask them in a public way that might actually force them to answer. Here’s the first one:

Asking Donald Trump
August 11, 2016

I’m not sure whether the dream thing works, but now that I’ve started it, I’ll probably stick with it for my next CDR blog post, “Asking Hillary Clinton.”

In case you missed my earlier CDR blog posts click here to see them.

#CripTheVote

#CripTheVote logo, spelled out in rainbow colored letters, with icon of a ballot box with four disability symbols on the front

I don’t remember if I’ve said it here before, but let me say it now … #CripTheVote is the single most satisfying disability-related project I’ve ever been involved with. It’s hard to say exactly what the “outcomes” of it will be, but for once, I’m not too worried about it. It really feels like the process itself is its own reward. I have learned so much, and my thinking about disability in politics has evolved at triple speed since starting this project with Alice Wong and Gregg Beratan. It’s been an incredibly exiting and productive 7 months, and we’re now in the home stretch, so to speak, with Election Day in sight.

We have settled on a slate of activities between now and November 8. You can read all about it on Alice Wong’s Disability Visibility Project website, and the schedule of events is below:

#CripTheVote Events Sept-Nov 2016
Alice Wong, Disability Visibility Project - August 17, 2016

Sep 19, 7 pm EST: Twitter chat
Political participation and first-time voters
Guest hosts Rock The Vote and the American Association of People with Disabilities.

Sep 26, 9 pm EST: Live-tweet
First Presidential Debate

Sep 27, 5 pm EST: Twitter chat
Media Representation of Disability in 2016 Election
Guest host Rooted in Rights.

Oct 4, 9 pm EST: Live-Tweet
Vice-Presidential Debate

Oct 9, 9 pm EST: Live-Tweet
Second Presidential Debate

Oct 13, 8 pm EST:  Twitter chat
Poverty, Public Programs, and Economic Self-Sufficiency

Oct 19, 9 pm EST: Live-Tweet
Third Presidential Debate

Oct 22, 8 pm EST: Twitter chat
Congressional, State, & Local Elections

November 8, 8 pm EST: Live-Tweet
Election Day!!!

If you are still not sure what #CripTheVote is or how it works, here are some links to get you started:

Petition

Cartoon style drawing of a petition

I’ve been too busy today to write a longer post, so it’s a good opportunity to share a worthwhile petition. It’s asking the President, (I’m not sure why, but whatever), and the U.S. Patent Office to cancel the trademarking of the term “Invisible Disabilities,” which a nonprofit organization got for itself and is actively stopping anyone else from using.

As this Daily Dot article points out … and should be obvious anyway … “invisible disabilities” is a generic term widely used for a very long time to categorize various disabilities that aren’t apparent to others. This organization, the Invisible Disabilities Association, is basically meant to address the concerns of people with invisible disabilities, so they’re more or less on topic. The problem is that they are trying to claim ownership of a widely used descriptive term that is also viewed by many people to be an identity … something like an ethnicity. Either way, it’s ludicrous and ungenerous, and they certainly didn’t creatively come up with the term, so I have no idea how or why the Patent Office allowed the trademark to go through.

At some later date I might have more to say about the organization itself, which also happens to have a rhetorical style that I find a bit creepy and off-putting. I there may be structural and philosophical reasons for that, but I want to explore the role sentimentality in disability discourse. Is the sweetness and cheerleading approach wrong, or is it just a different cultural and emotional perspective on disability that I personally don’t like?

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.

A Bit Of Local Advocacy

Close up picture of a dictionary page with the word "advocacy" being highlighted in green with a highlighter pen

A little over a week ago, the local newspaper where I live published an article about a community forum on New York State’s plans for reforming and all but phasing out sheltered workshops. The exact directives and lines of authority are a bit murky, but the article mainly focuses on the idea that due to the Olmstead decision, a well-known sheltered workshop in Plattsburgh, my home town, is being forced to adopt changes that threaten its survival. What caught my eye, of course, was the headline:

Advocates for disabled: Integration not the answer
Tom Marble, Press-Republican - May 5, 2016

“Oh, crap!” I thought. I had a pretty good idea before I even read the thing which agency or type of agency was probably involved, and what the message would be. It was our local ARC, named the Advocacy and Resource Center, which runs a sheltered workshop called Champlain Valley Industries, (CVI). And the article basically recounted a bunch of CVI staff, workers with disabilities, and families saying, in effect, “Please don’t close the workshop. I like working here!” with an added implication that with unemployment a big problem around here as it is, how in heck are these people supposed to get a normal job? How is it an improvement for them to be kicked out of productive work in a safe, sociable environment and then not be able to get a job at all?

The overall point seemed to be that the big bad State is ruining things as usual, sticking their noses in and touting pie-in-the-sky ideas that have no relation to the way things really are.

I'll stipulate that this workshop probably IS safe. It's certainly nothing like those horror story places where people are virtually imprisoned, plucking dead chickens for pennies a day, housed in unsanitary bunk houses, exploited for huge profits. It's not like that. However, it is a highly regulated workplace, cut off from the wider community, and I'm not at all sure socializing is encouraged in the actual workshop. It's more likely that being chatty and having fun is carefully documented as inappropriate behavior, and taken as clinical evidence that these workers aren't ready for mainstream work. But the important thing is that they have something to do and a place to go during the day, which is quite a win-win for everyone ... or so the reasoning goes.

The day the article came out, I think, I happened to be talking or emailing with Robert Poulin, who is the Executive Director of the North Country Center for Independence, where I used to be the ED. He said he was going to work on a response and asked if I wanted to work on it with him. I was happy to do that, and today the Press-Republican posted our “In My Opinion” online. The article will be out in print tomorrow.

In My Opinion: Sheltered workshops not the answer
Robert Poulin and Andrew Pulrang, Press-Republican - May 17, 2016

Incidentally, another local disability activist reminded me last week of a Press-Republican article in 1993, about another community forum where the ARC brought lots of it’s “clients” to protest another effort towards more community integration … in that case a plan to fold the ARC’s buses into a county-wide combined fleet open to everyone. This, of course, would have meant people with developmental disabilities riding the bus with non-disabled people, and just about everyone who spoke were against it, though most of them put it in terms of losing a service, not directly objecting to integration. There is a similar dynamic at work now with the sheltered workshop issue. They don’t directly oppose having a better job or getting paid more, it’s just that they don’t want to loose a thing they have, whatever it is, for any reason.

The reminder of that hearing triggered vivid memories. It was the first time I saw how internalized ableism among people with disabilities sometimes motivates us to oppose things we should not oppose. It’s also the first time I really understood that the “disability community,” like every community, doesn’t have agreed upon opinions about things. The most you can say, I think, is that those of us who are engaged in disability policy issues by choice share a fairly predictable and distinctive set of ideas about disability. Those of us who aren’t engaged, or are engaged only when forced to be, are much harder to predict, and more likely to be swayed by fear of change.

Ironically, we share most of the same negative experiences of ableism and being “screwed” by ham-fisted “authorities,” but we come to different conclusions on what to do about it.

I also want to say that it was a real pleasure to work with Robert on our response.