The best things about disability I read last month …
An Open Letter to Lupita Nyong’o and Black Filmmakers
Imani Barbarin, Crutches & Spice - April 7, 2019
This is a necessary post that explains why disability representation is so important in movies, and how the ableism experienced by black disabled people is unique and distinct from either ableism or racism by themselves.
People With Disabilities Face Challenges Campaigning
Abagail Abrams, Time - June 12, 2019
Ms. Abrams does a terrific job exploring the current state of disability in politics, while introducing a new National Council on Independent Living program aimed at helping disabled people run for office.
It’s Perfectly OK To Call A Disabled Person ‘Disabled,’ And Here’s Why
Brittany Wong, HuffPost Life - June 14, 2019
Everyone who writes anything about disability eventually tries to explain our terminology wars. But this one is worth reading. It might be the definitive word on the words we use.
2020 candidates: none of them have accessible websites for disabled people
s.e. smith, Vox.com - June 26, 2019
This article not only highlights the fact that campaign websites aren’t accessible. It also gives a very good overview of disability issues in politics to show why campaign website accessibility is more than a technicality.
The Olmstead Decision & Me
Alice Wong, Disability Visibility Project - June 26, 2019
It’s hard to explain the nursing home vs. home care issue in a clear and emotionally resonant way. If you know someone who needs to understand, this is a great start.
Here’s Some Free Advice for Presidential Candidates on How to Talk About Disability
Rooted in Rights - June 25, 2019
An effort to put together the disability community’s varied and sometimes contradictory feelings about disability rhetoric, and offer candidates some practical advice on how to talk about disability right.
The best things about disability I read last month …
Are You Inspired by That Disabled Person or Shocked They Were Included?
Imani Barbarin, Crutches & Spice - May 30, 2019
Inspiration Porn, in all its many varieties, never seems to die. This “America’s Got Talent” performance promoted the latest version, and Imani Barbarin is on it with a crystal clear explanation of one of the reasons why it’s a problem, and an impassioned “Stop it!” for both popular culture and everyday participants in social media.
Tyrion Lannister, Dwarf Identity, and the Struggle for Agency
Dr. Joseph Stramondo, Rooted In Rights - May 21, 2019
The end of the long running TV epic “Game Of Thrones” renewed and complicated debates over the meaning and impact of the show’s iconic disabled characters. This is a particularly interesting look at probably the show’s most loved and admired character.
Disabled people need more ramps, not more fancy new gadgets
s. e. smith, Vox.com - April 30, 2019
Innovative technology has always been viewed as one of the keys to independence for people with disabilities, and for good reason. But there definitely is at least a sub-genre of disability gadgets that miss the mark, mainly because what disabled people need most often doesn’t match up with what looks awesome to non-disabled people.
“It’s a Spectrum” Doesn’t Mean What You Think
C. L. Lynch, The Aspergian | A Neurodivergent Collective - May 6, 2019
This is one of the most helpful explanations I have seen so far of the “neurodiversity” view of autism. Given how contentious the competing views are, explainers like this are incredibly valuable.
Taking Up Space - New Mobility
Reveca Torres, New Mobility - May 1, 2019
A lot of internalized ableism boils down to disabled people feeling ashamed for “taking up space.”
Few ideas are as important to disabled people, and so widely misunderstood, as the assertion, “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. Either there’s something wrong with us that we feel this way, or we like the "special" feeling and privileges disability supposedly gives us, or 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, for some of us it’s a hard “Yes!” We literally do not 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 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 malfunctioning part. It would be more like complete 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 more complicated.
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 messy 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 causesus to lose hundreds of dollars in benefits, 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!”
When you think about it, it’s really not that weird.
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.
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.
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: email@example.com.
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.