New Year's Resolutions for 2019

Making New Year’s Resolutions is usually a tiresome cliché, but this year I have some anyway. Specifically, I have three New Year’s Resolutions that relate to how I want to live in 2019 as a disabled person.

Resolution 1: I resolve to use less disability jargon, and explain it when I do use it.

Disability culture and politics often seems fueled and even defined by unique and highly specialized words. For example: ableism, inspiration porn, institutional bias, intersectionality, eugenics, erasure, emotional labor, or identity first vs. person first language. All of these terms serve useful purposes, giving voice to experiences and ideas that disabled people share but often have a hard time describing to others. Other groups and cultures have their own “insider” language too, but the disability community in particular seems to rely on words and phrases not only to express our ideas about disability, but to actually shape them.

Unfortunately, this can make disability culture and communication seem intimidating and closed to outsiders and newcomers. That includes many people who actually have disabilities but don’t organize their lives and identities around disability culture and activism. And this can lead not only to an exclusiveness that’s the opposite of our community’s supposed value of inclusion, but also a remoteness that makes important ideas about disability literally inaccessible.

That’s why in the new year I will try to use more familiar, accessible language to explain disability concepts and describe disability experiences. Some disability terms are important in themselves, and can’t be improved on, like “ableism.” But when I use them I will at least try to take the time to explain them. I’m also starting a year-long blog series on disability terminology, called The Disability Alphabet.

Resolution 2: I resolve to reevaluate my relationship with social media.

Don’t get the wrong idea. I’m not going to delete my Facebook account or stop tweeting. I’m not going to stop watching YouTube videos. And I’m not going to start preaching the virtues of “limiting my screen time.”

I’m old enough to remember when it was common for “smart” people to boast that they didn’t watch TV, or even own a TV set. It feels like there’s a trend growing in that sort of direction with social media. It’s becoming fashionable to abstain, and subtly look down on people who use social media. The thing is, for a long time TV really was mostly crap. And at the moment, social media seems to be full of crap, too. But Social media platforms are also vital links and communication tools, especially for disabled people. And like TV, we can choose what to pay attention to and what to ignore.

So what do I mean by “reevaluating” how I use social media?

First of all, I won’t be so quick to dismiss reports about what these services do behind the scenes. And I want to be more aware of how the algorithms that determine what we see, hear, and read can affect how we think.

I also want to reach beyond my own “friend” and “follow” lists to people and publications that approach disability differently than I do. I want to look for interesting disabled people who are not activists, who are just starting out on their journey, or who are still grappling with what, if anything, their disabilities mean to them. I’ll never support disability approaches I completely disagree with … like sheltered workshops and segregated “residential’ programs. And I don’t think I’ll ever like gooey “inspiration porn.” But I will try harder to understand where people are coming from and why they may talk about disability with different priorities, perspectives, and tastes than I do.

Resolution 3: I resolve to speak to more people about disability issues.

Sometimes it seems like I have two personalities when it comes to talking about disability. Online, I’m an extrovert. In person, I’m a shy introvert. I can be nervous, almost embarrassed to talk in person about disability issues even with people I know and love very well. I want to be bolder, more willing to talk to people in my “real” life about disability experiences and issues.

As I’ve already indicated, I also want to connect more with people who are disabled, but aren’t engaged very much in disability issues, culture, or activism … people who don’t already tweet, comment, and blog every day about disability. I’m talking about proactively bringing up political and cultural issues about disability that I think are important to discuss, with people outside the safe and comfortable “disability bubble” I tend to inhabit.

A good test for this will be my 30th college reunion this summer. Will I be able to explain my disability writing, nonprofit work, and activism in a way my old classmates will understand? Will I be able to do it briefly, simply, without rambling or trying to explain too much?

By the way, when I say I want to talk to more people about disability, I don’t mean being more generous with intrusive questions from strangers. While I have a pretty high tolerance for answering questions like, “What’s the matter with you?” and “How do you drive?”, I don’t plan on opening myself up more to strangers’ morbid curiosity. That’s one kind of emotional labor I don’t need more of in 2019. (Emotional labor is the kind of social interaction work that over time takes an emotional toll. See? I explained it!)

What are your resolutions for 2019? Or, do you stay away from resolutions entirely? Feel free to share and comment below!

Monthly Reading List - December 2018

Each month I select and share five disability-related articles I read the previous month. Here are the five from December 2018:

American Nightmare: How workers with disabilities are denied economic prosperity
Mark Riccobono, The Hill - November 30, 2018

This is an unusually good explanation of subminimum wage, the original rationale for it, and why it’s long past time for it to end.

Stop Asking Disabled People, “What Happened To You?”
Jessica Gimeno, Fashionably Ill - December 6, 2018

Intrusive personal questions from strangers is one of the most common everyday annoyances of having disabilities. It’s far from the worst kind of ableism, but it really does get you down. This article explains why, and offers helpful suggestions on how to engage with disabled people more appropriately.

Speech at ASAN Gala 2018
Julia Bascom, Executive Director, Autistic Self Advocacy Network - December 10, 2018

Julia Bascom offers an exceptionally clear and comprehensive overview of the current state of disability rights in the United States. She also gives a powerful defense of the importance of inclusion and disability rights principles for people with developmental disabilities.

Disability insurance: A crisis ends, but problems persist
Henry J. Aaron, Brookings - December 12, 2018

This article offers some encouraging news about the Social Security Disability “crisis,” while noting that reform is still needed. What’s missing, however, is any ideas from the people who actually use SSDI, the disability community itself.

DVP Interview: Judith Heumann and Alice Wong
Alice Wong, Disability Visibility Project - December 13, 2018

One of the pioneers of disability rights and independent living in the U.S. shares a little of her background and perspective on her life and what’s important for people with disabilities in general.

Why The Disability Community Needs To Vote on November 6th

It’s just a couple of weeks since I said I was more or less quitting blogging, but I feel compelled to write a blog post about the upcoming U.S. Midterm Elections. In the work I do with #CripTheVote, I try to be balanced and “nonpartisan,” but this time I’m going to go ahead and say what I think needs to happen in the 2018 Midterms, and why it’s especially important for the disability community.

At minimum, we need to flip at least one house of Congress to Democratic control. I personally would prefer both the House and Senate, but we need to flip at least one. If you generally vote for Democrats, as I do, this is obvious. If you usually vote for Republicans, you may think I'm being excessively partisan. But hear me out. There are four big reasons why people with disabilities, in particular, need to make this happen this year, and vote in noticeable numbers while doing it.

1. To act as a check on President Trump

Despite endless debate over President Trump's exact political significance, he is, if nothing else, a wild card. Nobody really knows for sure what he will do. So it is clearly a mistake to think he would never actually do anything to hurt "your" people, however you define that. And nothing in Trump’s history or rhetoric indicates that he has any special sympathy or interest in people with disabilities.

On the contrary, President Trump is notable for how openly he evaluates people based on how conventionally attractive they are, and whether or not they are “normal” in his view. He clearly despises anyone he regards as weak or alien in any way. Many of us disabled people feel should comparatively accepted by our families and communities. However, all of us who have disabilities also know that in fundamental ways we are still easily singled out as needy, abnormal, and unfamiliar. These are not qualities that President Trump is ever likely to embrace. If it ever looks to him like scapegoating people with disabilities would help him, it’s hard to imagine him hesitating to do it. It’s already happened in the United Kingdom, which is just barely emerging now from a period of years when both public sentiment and public policy directly targeted disabled people as unworthy financial drains on society. A strong opposition in Congress would at least help prevent a characteristic Trump tirade or delusion about disabled people from becoming actual public policy.

(Note … His administration is already targeting disabled immigrants very specifically, by proposing to ban aspiring immigrants and asylum seekers if they are deemed likely to be a “public charge” … that is, if they may need human services, due to, among other things, disabilities. It’s cruel on its own, and think of the precedent it sets even for disabled citizens.)

2. To act as a check on primarily Republican plans that would hurt disabled people

These include:

- Allowing health insurance companies to once again refuse coverage or charge more for “pre-existing conditions.”

- Limiting or cutting Medicaid, or narrowing Medicaid eligibility

- Cutting Social Security Disability, or narrowing eligibility

- Weakening the Americans with Disabilities Act

All of these steps can be prevented if just a single house of Congress switches to Democratic control for at least the next four years. There are no guarantees, but the likelihood of any of these things happening in the near term go way down if just one house of Congress is controlled by Democrats.

3. We need to demonstrate the growing power and political relevance of the "disability vote," so politicians of all parties and beliefs will feel they have to take disability issues and disabled voters seriously.

This is should be important to you whether you are a Democrat or a Republican. At some point, sooner or later, Democrats will be in a position to make major policy again. Nevertheless, it is a mistake to assume that Democrats will get disability policy right all on their own, instinctively. It really isn’t enough to for the disability community to help bring about a “Blue Wave” on November 6th. Democrats, too, need to recognize people with disabilities and their families as a factor in their future vision, policies, and tactics, and we will still have to be vigilant and hold elected officials accountable, no matter who is in Congress, the Supreme Court, or The White House.

4. We need to vote for state and local officials who actually make and implement most of the everyday decisions that affect disabled people's lives. And we need to be noticed as we do it so even state, city, county, and town officials will take our needs into account.

- Town and city councils decide on accessibility and good repair of streets and sidewalks, and in colder climates, what is and isn't done to clear snow and ice from pedestrian areas.

- County legislatures set the tone and budgetary parameters for how social and human services are delivered, including those for people with disabilities and their families.

- States have a lot of control over the scope and eligibility of Medicaid, including programs that provide long-term care and supports for disabled people.

You don’t have to be “into politics” or commit to full-time disability activism to recognize that elections do matter for people with disabilities and their families. And this year there are specific stakes and reasons for all of us to vote, and do so consciously and thoughtfully as disability voters.

Here are some online resources on voting … some general, some specific to concerns of the disability community:

1. Online Voter Registration - Vote.org

2. Find Your Polling Place - National Association of Secretaries of State

3. Polling Site Accessibility Checklist - U.S. Department of Justice, Civil Rights Division

4. Find Out What Is On Your Ballot - Ballotready

5. Voting Rights Subcommittee - National Council on Independent Living

6. Disability Issues Guide - American Association of People with Disabilities

7. Disability Issues Surveys, 2016 & 2018 - #CripTheVote

8. Voting Resources - Autistic Self Advocacy Network

9. Plain Language 2018 Voter Guide - Bazelon Center for Mental Health Law

10. Information On All Public Offices and Elections - Ballotpedia

11. Election Polling and Forecasts - FiveThirtyEight.com

12, The 2018 Midterm Elections, explained - Vox.com

Shifting Away From Blogging

I have decided to stop regular blogging here at Disability Thinking. I will, however, keep the site going, and use it from time to time to post things I want to share that can’t be shared properly on Twitter or Facebook.

Disability blogging played a major part in my transition from 9 to 5 work at a Center for Independent Living, to a more freelance and introspective approach to disability. I started out with the goal of posting something every day. That worked out well for me for a few years. It got me into the rhythm of regular blogging. It gave me some daily discipline during a time when I could have very easily slipped into pure laziness and probably depression. Most importantly, daily blogging on disability was a terrific outlet for a lot of pent-up thought, ideas, and questions swirling about my head about disability that I had not previously been able to articulate.

Disability Thinking has evolved quite a bit, and I've had some valuable experiences along the way ...

Exploring in-depth topics ... like the nature of ableism, what disability identity and culture mean, what "inspiration porn" actually is, and what exactly we want to say to the non-disabled people we deal with every day. In all of these and other topics I tried to explore beyond the buzzwords, and demystify concepts for non-disabled readers, as well as disabled readers just beginning to explore disability issues in-depth. But really, I was exploring for myself, and inviting others to tag along with me.

Images and videos ... At some point I stopped being quite so impressed with social media photos and videos of “cool people in wheelchairs being cool," especially when they are just images, without any context or commentary. But it’s good to remember that for a lot of people, including a lot of disabled people, seeing images of disability that are cool and empowering, rather than sentimental or pitiful, is still quite new and revolutionary.

The Disability.TV Podcast ... I started out wanting to talk about disabled characters, disability tropes, and what disability on TV says to the world about disability. I discovered that discussion about disability on TV among disability activists is almost entirely focused on representation, that is, whether or not disabled characters are played by disabled actors ... something I had literally never though about before. I also discovered, not for the first time, that I am not good at extemporaneous speaking. On the other hand, I did learn how to make a podcast, including basic audio editing and promotion.

If I'm not going to do regular disability blogging, what am I going to do?

Disability Blogger Linkups ... This has been one of my favorite features of Disability Thinking, using Mr. Linky to create weekly or monthly "linkups" where people can share their disability-related work. I modeled it initially after the LoveThatMax weekend linkups, but it was exciting to see a rather different kind of writing accumulate on my linkups. I feel a little ambivalent about it because it sometimes feels too close to me benefiting from free labor from other disabled writers, at least some of whom should be getting paid. On the other hand, I don't benefit financially in any way, and people post there because they want to, not because I asked them to personally. I will probably continue hosting monthly linkups.

Weekly / Monthly Reading Lists ... In May 2015 I started posting a weekly selection of 5 disability-related articles, eventually switching to monthly. I will probably keep posting these too.

#CripTheVote ... In a way, my involvement in this project evolved out of my blogging. I "met" Alice Wong and Gregg Beratan mainly on Facebook and Twitter, but I wouldn't have been looking for disabled activists on Facebook and Twitter if I hadn't been promoting my blog on these platforms and looking for things to write about. Anyway, we got talking about the then upcoming 2016 elections and whether anyone would be talking about disability issues, and we decided we would see if we could start the conversation ourselves. Nearly three years later, #CripTheVote is easily the most consistently satisfying and meaningful thing I have done since I left my CIL work. It will continue!

Twitter ... I will try to condense my future observations on disability and share them on Twitter. A few years ago I would have thought that was a terrible idea. But I really like how Twitter disciplines me to keep my writing brief and packed with meaning. Plus, you can actually say quite a lot with a reasonably sized Twitter thread.

YouTube Vlogging, maybe ... I still haven't given up the idea of a disability-centered vlog of some kind.

Meanwhile, the blog will stay open, and now and then I may decide to post something. I would also welcome any comments on what people look for in disability-related online media. Maybe an idea I haven’t thought of before will spur the next phase of Disability Thinking.

Disability Blogger Linkup - September, 2018

Welcome to the Disability Blogger Linkup! If you are new to this, click here to see previous Disability Blogger Link-Ups.

The idea is to share something you have written that's about disability in some way. Please be sure to link to the specific article or post, not just the main page of the website it's on. Also, to make the links easier for visitors to identify, in the “Your name” blank, 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 have any trouble making it work, or have any questions, feel free to email me at: apulrang@icloud.com.

Note: Please don’t post pieces that are basically advertising or endorsing a product or service for sale. I have never made this explicit before, but I have been getting a lot of emails from bloggers and website proprietors who may or may not be semi-disguised marketers, wanting to post “guest blogs” to this site. No disrespect to what they are doing, but that’s not the kind of content I want.

This Link-Up will close at Midnight Eastern on Sunday. The next Disability Blogger Link-Up will start Friday, October 12, 2018.

Disability Thought Of The Week: What's Your Major?

I don’t know how new this idea really is, but it feels new and kind of fresh to me. Another way to describe the different ways people approach disability is to use a college major analogy. The way I see it, the main approaches to disability break down like this:

Biology

Disability is about physical and mental conditions, symptoms, diagnoses, treatment, rehabilitation, adaptation, prevention, and cures. It’s about how our bodies and / or our minds are different, and how we can cope with that, or make them less different. It's about fixing what's wrong.

Psychology

Disability is about self image, education, social skills, internalized ableism, empowerment, and disability prejudice. It’s about how each of us processes our disabilities, the way people treat us, and how we present ourselves and deal with the people around us in relation to our disabilities. It's about understanding ourselves and what disability means to us as individuals.

Sociology

Disability is about institutional ableism, accessibility, disability culture and identity, and disability history. It’s about how society and culture creates, uses and modifies the category of disability, and how we can deal with that and redefine disability on our own terms, together, as a group. It's about understanding disability as a social phenomenon.

Political Science

Disability is about activism, coalition-building, and disability policy. It’s about making everyday life better … maybe a lot better … for disabled people through deliberate and specific policies, through concrete things we know how to do, if we can muster enough political will. It's about using political action to make things better.

Everybody with disabilities, and everyone with any reason to think about disability, “majors” in one of these approaches, sometimes with a minor to go with it. The thing is, having disabilities is about ALL of these things. The differences among us are about which aspects of disabilities we understand best, which affect us most day to day, and which we are most interested in thinking and talking about.

And, like so many college students, sometimes we switch majors over time. What’s your major? What was it when you were young, or when you first experienced disability? Has your disability major changed?

Monthly Reading List: September, 2018

Five selected disability-themed articles from August, 2018. It turns out my choices this month are about fundamentals of understanding the disability experience. Taken together, they form a pretty good introduction for anyone who might be exploring disability thinking for the first time.

It isn’t a wheelchair that makes my life disabled, it’s buildings without ramps
Frances Ryan, The Guardian - August 23, 2018

Accessibility is the purest, simplest example of how in real life, disability is about your surroundings, living conditions, and the restrictions they impose as much ... if not more ... as it is about any medical conditions or impairments you have. This is the point where the Social Model and Medical Model of disability diverge.

My Disabilities Make Me Both Broken and Whole
Kate Ryan, Rooted In Rights - August 24, 2018

There is a lot of debate inside the disability community about whether accepting the Social Model of disability, and having a positive view of disability in general, means you have to gloss over the frequent pain and medical complications of actual disabilities. This article deftly threads the needle between the two main ways we experience disability. The bonus is that it is beautifully expressed.

Cripple Perks: The Unreasonable Luxury of Living While Disabled
s.e. smith, Catapult - August 15, 2018

One of the most common types of discrimination disabled people face is the dirty looks, eye rolls, and other forms of passive and sometimes not so passive disapproval we get when we use "special" accommodations and shortcuts to make our lives a little more bearable. It's important for both non-disabled and disabled people to understand the difference between unearned privilege and necessary, equalizing accommodations. As long as we aspire to a "no help" standard of independence, and tacitly agree to the judgements of onlookers, we hold ourselves back from achieving real independence and equality.

Report shows LGBTI people with disability experience higher rates of discrimination
Nicole Pope, Disability Support Guide - August 10, 2018

The fact that many disabled people experience multiple overlapping layers of discrimination is often expressed so abstractly that people who don't experience it firsthand have trouble understanding it. Real data like this is valuable in demonstrating how being disabled and also LGBTQ mix to produce additional and distinct forms of discrimination. This is intersectionality ... a somewhat intimidating word for a pretty basic reality that still isn't recognized enough, even within the disability community.

Q&A With The Money Diarist Living On Disability
Anabel Pasarow, Refinery - August 9, 2018

You can't get more concrete than asking an actual disabled person on Social Security Disability how they manage their day to day finances. There is a lot of moral posturing about "Disability" benefits, but ultimately it comes down to real people doing real math.

Disability Thought Of The Week: Patience

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

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.

Bad Ideas About Disability

I spent some time this morning in an exasperating Twitter discussion about disability terminology. A man started off angrily objecting to the #CripTheVote hashtag for being offensive, and quickly moved on to rejecting almost every common disability term ... including simply “disability” ... as out of date, offensive, negative, etc. The only thing remotely like a workable terminology he would accept was “special needs,” which made some sense since he said he was an educator. I should also point out that the man said he is hearing impaired, which gives his opinion on the subject some authentic credence.

Soon the conversation between him and about 5 other disabled folks boiled down to an absolutely ironclad, and in his view moral belief that “disability” itself doesn’t exist, since everyone has unique abilities and disabilities. I think I am paraphrasing him more or less accurately.

Both views ... about disability terms and about disability itself ... are familiar to me. Both are generally well-intentioned ideas put forward by people who sincerely believe they have a progressive understanding of disability. However, both are also, in fundamental ways, regarded as bad ideas by significant portions of the disability community.

This particular man happened to be extremely obnoxious and condescending, but in a way that is beside the point. He was being obnoxious about ideas that at least some polite and fair-minded people also sometimes advocate. The discussion has prompted me to start working on a new series of blog posts on the most prominent and influential bad ideas about disability.

I don’t mean bad behavior, intentionally offensive language, or simple ignorance. I won’t be citing “ableism” as one of those bad ideas, because it’s much too broad. I won’t include random theories tossed off by someone in the course of a freewheeling conversation. I’m talking about relatively specific, well-intentioned, carefully thought out, and widely circulated ideas about disability that are, unfortunately, bad.

And what do I mean by bad? Since I want to steer clear of categorical judgements like right or wrong, accurate or inaccurate, I’ll count a disability idea as “bad” if it meets one or more of the following criteria:

  • It makes a sizable percentage of actual disabled people angry or uncomfortable.
  • It fails to accomplish its intended purpose.
  • It tends to lead people ... intentionally or unintentionally ... towards behavior that is harmful to disabled people.

I’m not quite ready to dive in full force on this series. I plan to take my time with it. So over the next few months, my tentative plan is to explore these three bad ideas about disability:

1. Using euphemisms for disability ... (e.g., differently-abled or special needs)

2. Espousing the idea that disability doesn’t really exist.

3. Asserting that there is a limit to the amount of support and accommodation disabled people should expect from society.

If you want to nominate another bad idea about disability, along these lines, feel free to leave a note in the comments.

Vlogging Update

I am still working on the idea of a YouTube vlog series on disability terminology. Sincere thanks to everyone who has sent me ideas on which words and terms to cover for each letter of the alphabet. Here is the list I have so far:

A    Ableism, Accessibility, Advocacy
B    Barrier-Free
C    Crip, Chronic Pain, Chronic Illness
D    Disabled, Differently-Abled, Discrimination
E    Erasure, Eugenics, Emotional Labor
F    Functioning Labels
G    Guide Dog
H    Handicapped
I    Inspiration Porn, Independent Living, Intersectional
J    _________________________
K    _________________________
L    Long Term Care
M    Medical Model, Marginalized
N    Neurodiversity
O    Oppression, Opioids, Outcomes
P    Prejudice, Privilege
Q    Quad Rugby
R    Representation
S    Self Advocate, Social Model, Special Needs
T    Transition, Transportation, Trauma
U    Undue Burden, Universal Design
V    Vocational Rehabilitation, Venn Diagrams
W    Wheelchairs, Willowbrook, White Cane
X    Xenophobia
Y    _________________________
Z    _________________________

There are still blanks to fill. Note also that I am planning on each episode covering no more than three words, so I won’t be able to cover every possible term. I will probably do Patreon-only episodes on any overflow terms, or terms that are heavily requested. Plus, i might do some biographical episodes for Patreon, on influential names in disability culture … alphabetically of course.

So when is all this going to happen?

I am hoping to record an introductory video this week, partly to promote the idea itself, and partly to experiment with the equipment and settings I’ve got, and practice editing. In the meantime, I still welcome feedback, technical advice, and of course more disability-related words and terms to fill in the alphabet.