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Few ideas are as important to disabled people, and so widely misunderstood, as the declaration, “We don’t want to be cured!”

To many, if not most non-disabled people … and quite a few disabled people too … this seems bizarre. They either think there’s something wrong with us that we feel this way, or that we like the "special" feeling and privileges disability supposedly gives us, or, they think it’s a lie we tell for some political or rhetorical purpose ... maybe to pump up the disability community or focus attention our material goals.

So do we really mean it when we say we don’t want to be cured?

Yes, sort of.

First of all, some of us it’s a hard “Yes!” We literally don’t want to be “cured." We don’t want our disabilities “fixed.” If a magic pill was available and affordable, we wouldn’t take it.

But I think for most of us, the feeling is quite genuine, but not quite as specific as the words suggest. Most of the time when we say we don’t want a cure, we mean that we are so used to our disabilities that we have a hard time imagining ourselves after a purely hypothetical cure. Many of us would appreciate some specific improvements or relief in certain aspects of our disabilities, such as less pain, more stamina, or maybe a fix for one particular impairment that would be nice to leave behind, even if other impairments remained. But we can’t really even guess who we would be without our underlying conditions.

I would love to be able to breathe better than I do. But I can’t fathom who I would be, what kind of life and even personality I would have, if I were 6 feet tall instead of 4, or didn’t have a deeply curved spine, or had a thicker, more solid, stronger physique. Besides, my disabilities aren’t the kind you can really cure, or even imagine curing. For me, a cure would have to entail more than repairing a part. It would be more like replacement of myself, and that's a weird thing to think about, much less wish for.

It's not like that for all disabled people. People who have been recently disabled, or who have very specific and isolated impairments, often feel that their disabilities really are just unwanted breakdowns that should be fixable. Many have pre-disability selves that are vividly remembered. That complicates the idea of disability being an integral part of themselves. Disabilities that come with age, or from disease or accident, sometimes don't feel like something you live with and embrace, at least not right away. And it should be noted that chronic pain and illness straddles the line between disability and sickness in ways that make these discussions of cure and improvement even harder.

Over time though, even people who on some level think about a cure tend gradually to adjust their self-image, so that while a cure may in some ways still feel desirable, the ramifications of it become harder to map out. That alone makes talk of cures, recovery, and even "overcoming" disability far more complicated than it tends to be in popular rhetoric.

Finally, most of us have many more immediate things to think about, like whether a stranger will ask us a rude question in the line to get coffee, where and when we'll be able to go to the bathroom, or whether an extra hour of work or an extra $20 in earnings will causes us to lose hundreds of dollars in benefits, and maybe our health insurance too.

So when the topic of a someday miracle cure comes up, or is shoved in our faces as the only sensible feeling to have about disability, we tend to say something along the lines of: “I don’t want to be cured!”

it’s really not that weird.

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Disability Thinking by Andrew Pulrang - 1M ago

I found the whole Disability Alphabet thing too boring and pedantic to continue. I still think the disability community could use some kind of central source for disability terminology, but I’m not the one to provide it. There were too many “on the one hand / on the other hand” bullet points, and I ended up feeling too much like a mansplainer. In short, I did not enjoy it.

So I’ve deleted my Disability Alphabet posts and will be returning to something approaching regular blogging on disability topics.

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Each month I select and share five disability-related articles I read the previous month. Here are the five from January 2019:

The College Admissions Scandal Could Have Lasting Impacts for Disabled People
Brittney McNamara, Teen Vogue - March 13, 2019

It's especially good to see this angle covered so well by Teen Vogue. Much of its audience is either in or approaching college, and just beginning to shape how they think about disability accommodations in academics.

‘Medicare for All’ Must Truly Be for All—Including People With Disabilities
Robyn Powell, Rewire News - March 13, 2019

Whether or not "Medicare For All" is a politically realistic possibility at the moment, it's incredibly important to map out what disabled people need from any health insurance system.

I have a disability everyone can see. My bipolar friend who died by suicide did not.
Ben Mattlin, USA Today - March 20, 2019

This is a very good head-on exploration of the sometimes difficult relationship between the community of physically disabled people and people with mental illness.

Here’s What Dr. Phil Got Wrong in His Episode on Interabled Relationships
Melissa Blake, Rooted In Rights - March 26, 2019

Frankly, you don't have to look very hard to find Dr. Phil being sloppy and unnecessarily insulting on his show. And a couple of his quotes alone speak for themselves. But this piece nicely underscores the core problem with his recent show on "interabled" couples.

Betsy DeVos’s threats to the Special Olympics are cruel. But disabled people have bigger problems.
s.e. smith, Vox - March 28, 2019

Problems with disabled people's health care, critical benefits, and basic civil rights never seem to "catch fire" with the public, while certain high-profile disability causes garner a disproportionate amounts of sympathy and outrage. This kind of thing is completely understandable and at the same time legitimately frustrating.

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Welcome to the monthly Disability Blogger Linkup for March, 2019! If you are new to this, click here to see previous linkups.

The idea is to share something you’ve 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:

Then click the “Enter” button.

Please don’t post pieces that are basically advertising or endorsing a product or service for sale. There’s nothing wrong with promoting a specific product or service, but that’s not what this writing share is for. You may however share a video or audio program if that’s your preferred medium.

This linkup will close at Midnight Eastern on Sunday. The next Disability Blogger Link-Up will start Friday, April 12, 2019.

That’s it! If you have any trouble making it work, or have any questions, feel free to email me at: apulrang@icloud.com.

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The best things about disability I read last month …

Understanding the spectrum – a comic strip explanation
Rebecca Burgess, The Art of Autism - September 12, 2018

I think the reason I’m so fascinated with the ongoing “autism wars” is because: a) I’m not autistic, so the personal stakes for me are almost nonexistent, b) it’s about a kind of disability, which I AM personally interested in, and c) it’s about a very real, concrete, non-theoretical argument about the very nature of that disability. There are roughly two sides to this debate, each of which looks at the same thing and has nearly opposite interpretations of it. This “comic strip explanation” is the clearest illustration of the “neurodiversity” philosophy of autism, which is the one that makes the most sense to me.

For People With Disabilities, Navigating Can Be Difficult In Wintertime
Dave Lucas, WAMC Northeast Public Radio - February 4, 2019

As a winter-dwelling Northeasterner, I feel like the everyday barriers of poorly-managed snow and ice removal isn’t recognized nearly enough. It’s one of those major hardships of life with disabilities that really could be solved but isn’t. And it’s simply because people don’t think it’s important enough for anything more than voluntary efforts.

#ThingsDisabledPeopleKnow is Necessary Because Realistic Disability Representation is Scarce
Imani Barbarin, Rooted In Rights - February 6, 2019

This is about one of the most widely appealing and valuable disability-related hashtags I have ever seen. It’s also a good way to raise “disability awareness” in a truly authentic way.

Personal assistance needed
Annemarie Schuetz and Elizabeth Lepro, The River Reporter - February 20, 2019

It’s surprisingly hard to explain what home care and consumer direction mean for disabled people, but this article does it very, very well.

Will Presidential Candidates Remember the Voting Power of People With Disabilities?
Robyn Powell, Rewire News - February 20, 2019

It’s definitely not too soon to start thinking and planning for how to get disabled people and disability issues into the 2020 elections.

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Six years ago yesterday I tapped “Enter” and uploaded my first post at Disability Thinking. I consider the blog a success because despite many ups, downs, and false starts, I have more or less kept this thing up and current for six whole years. And going forward, I see no reason not to keep blogging on disability topics for another six years at least.

The archives are all on the right, so feel free to look around … and maybe be a little forgiving of some of those early posts!

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Welcome to the monthly Disability Blogger Linkup! If you are new to this, click here to see previous linkups.

The idea is to share something you’ve 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:

Then click the “Enter” button.

Please don’t post pieces that are basically advertising or endorsing a product or service for sale. There’s nothing wrong with promoting a specific product or service, but that’s not what this writing share is for. You may however share a video or audio program if that’s your preferred medium.

This linkup will close at Midnight Eastern on Sunday. The next Disability Blogger Link-Up will start Friday, April 8, 2019.

That’s it! If you have any trouble making it work, or have any questions, feel free to email me at: apulrang@icloud.com.

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Each month I select and share five disability-related articles I read the previous month. Here are the five from January 2019:

4 Ways To Respect The Needs Of Employees With Disabilities
Amanda Reaume, Forbes - December 14, 2018

I’m not sure why, but Forbes has been publishing a lot of articles on accommodating employees with disabilities. It is a business magazine, so it fits with its profile, but the number of articles on this topic is surprising. I wonder if there is a specific reason for this. In any case, the articles are usually pretty good, though not very ground-breaking or audacious. It’s mostly standard “disability is diversity” and “being decent to disabled people is good business” fare.

Navigating the Wheelchair Accessible Path to Adoption
Katrina Kelly, Center for Disability Rights Blog - January 2, 2019

A great and very personal take on a disability topic not often discussed, but probably more common and relevant than most people would think.

Hiring People with Disabilities is Good Business
Ted Kennedy, Jr., New York Times - December 27, 2018

Again, the disability employment arguments are pretty standard and unchanged for decades. It’s essentially the same pro-business argument that took shape right after passage of the Americans with Disabilities Act. It’s not a bad argument, but it might be a little stale. It also might be more valid in “white collar” workplaces than it is in lower wage occupations.

Why cast Bryan Cranston as a quadriplegic man when disabled actors are queuing up for roles
Rachel Charlton-Dailey, Metro.UK - January 9, 2019

This to me is the best argument for why it’s morally objectionable for non-disabled actors to platy disabled characters … not just representation for the audience, but employment opportunities for disabled actors who need to make a living.

I Prefer That You Say I’m “Disabled”
Robyn Powell, Dame - January 15, 2019

A nice articulation of a classic disability question … how we want people to refer to us, and how we think of ourselves.

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Welcome to the monthly Disability Blogger Linkup! If you are new to this, click here to see previous linkups.

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:

Then click the "Enter" button.

Please don’t post pieces that are basically advertising or endorsing a product or service for sale. There’s nothing wrong with promoting a specific product or service, but that’s not what this writing share is for. Also, please share a single specific piece of writing, not a whole website or blog.

This linkup will close at Midnight Eastern on Sunday. The next Disability Blogger Link-Up will start Friday, February 8, 2019.

That's it! If you have any trouble making it work, or have any questions, feel free to email me at: apulrang@icloud.com.

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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!

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