3 Weekly Disability Reads

Most Sundays, I post links to three things about disability that I read, heard, or viewed over the previous week, with some notes of my own added.

March 28 - April 4, 2021

1. Overlooked No More: Kitty Cone, Trailblazer of the Disability Rights Movement
Wendy Lu, New York Times - March 26, 2021

We tend to hear about a small handful of activists in disability history, and rightfully so. But it’s also good the some of the gaps are being filled in, and some of the other key people being recognized.

2. Physicians’ biases, lack of knowledge, partly to blame for health care disparities among people with disabilities
Elizabeth Heubeck, The CT Mirror - March 22, 2021

I really hope we are getting to a point where the major professions can start dealing seriously with institutional ableism without taking the whole issue personally and defensively.

3. Med Student's Disability Helps Him Connect With Patients
Nick Romanenko, Rutgers Today - March 22, 2021

We need to learn more about whether and how doctors, nurses, and other medical professionals with disabilities can help deliver better medical care to disabled patients.

3 Weekly Disability Reads

Most Sundays, I post links to three things about disability that I read, heard, or viewed over the previous week, with some notes of my own added.

March 7-14, 2021

1. Q&A with Ingrid Tischer
Alice Wong, Disability Visibility Project - March 6, 2021

A compelling personal account of the kinds of struggles disabled people face as they try to get quality medical care while avoiding or confronting medical ableism.

2. 'Comedy is a wall breaker' for letting people with disabilities be themselves
Connie Gurlielmo, C|NET - March 8, 2021

Shannon DeVido talks about how comedy can help us talk about disability, and about the continuing need for more disability representation in popular culture.

3. I Refer to Myself as Disabled, Because My Disability Is Central to Who I Am
Erica Mones, PopSugar - March 9, 2021

An important exploration of disability terminology, and how our word choices can both reflect and shape how we understand ourselves and our disabilities.

3 Weekly Disability Reads

Most Sundays, I post links to three things about disability that I read, heard, or viewed over the previous week, with some notes of my own added.

February 14-21, 2021

1. You Don’t Have to Be a Superhero
Brady Gerber, Vulture - February 17, 2021

This is the best overview of how autism has been depicted in popular culture, from Rain Man, through Sheldon Cooper, to the small boom in more sophisticated portrayals on network and streaming TV. It seems that autistic characters have both reflected and shaped the evolution of general understanding of autism. And fortunately, with notable exceptions of course, they seem to be getting better.

2. Smart Ass Cripple: My Bad Case Of Vaccination Envy
Mike Ervin, The Progressive - February 17, 2021

I pretty much feel the same way as Smart Ass Cripple about disability and COVID vaccine access. While I agree in principle that that setting priorities and delaying access to some people is justified, I think a hell of a lot of disabled and chronically ill people, specifically, are being wrongly overlooked. I’ve got an vaccination appointment set for April, and I can handle the wait. But it still feels wrong somehow that I and people like me didn’t get access earlier.

3. U.S. Election Assistance Commission Releases Study On Disability And Voting Accessibility In The 2020 Elections
U.S. Election Assistance Commission - February 17, 2021

I won’t be the only one combing through these findings about voting access trends. Research like this is incredibly important. I hope it continues and expands in future elections.

3 Weekly Disability Reads

Most Sundays, I post links to three things about disability that I read, heard, or viewed over the previous week, with some notes of my own added.

January 18-24, 2020

1. I’m a Disability Activist Because I Have to Be, But Not Always Because I Want to Be
Shona Louise, Rooted In Rights - January 19, 2021

Disability activism can be exciting, empowering, and fulfilling. But most activists wouldn’t choose to be activists if they didn’t have to in order to survive and thrive. “Activism is not a hobby for a disabled person like me; activism is the only way I can access the world and live the life I want.”

2. ‘Breaking Bad’ and the Legacy of Disabled Representation in Peak TV
Kristen Lopez, IndieWire - January 21, 2021

This newest installment in Kristen Lopez’s series of articles on disability in TV and film provides another perspective on what it means to be a disabled activist or role model.

3. Music review – Sia’s controversial film about autism lacks coherence and authenticity

Luke Buckmaster, The Guardian - January 19, 2021

Buckmaster doesn’t like Sia’s film, and part of the reason is her controversial casting decisions, which not only failed the test of representation, but apparently failed the film itself. But it’s not the only reason he doesn’t like “Music,” and the reviewer even highlights things he does like about it. This is the first film review I have seen that both recognizes the growing concern about casting non-disabled actors to play disabled roles, and puts the issue in balanced context.

3 Weekly Disability Reads

Most Sundays, I post links to three things about disability that I read, heard, or viewed over the previous week, with some notes of my own added.

January 11-17, 2020

1. Interview: Julia Bascom
Neurodiversity News - January 7, 2021

A very personal, in-depth, and accessible look at neurodiversity and what it really means in the world of autism, and to some extent with other disabilities. From @JustStimming.

2. 'More visibility is needed': Pennsylvania state rep one of few with autism
Meghan Holohan, Today, January 15, 2021

A newly-elected autistic state legislator shares their perspectives on running for office and what’s ahead once elected.

3. 18 Books That Will Help You Better Understand Disability And Chronic Illness
Margaret Kingsbury, BuzzFeed News - January 14, 2021

It’s always helpful to find another good disability reading list.

3 Weekly Disability Reads

Most Sundays, I post links to three things about disability that I read, heard, or viewed over the previous week, with a few notes of my own added.

January 4-10, 2020

1. This Is Why Nursing Homes Failed So Badly
E. Tammy Kim, New York Times - December 31, 2020

“The awful truth is that long-term care was designed to fail years before Covid-19.”

In disability activism, we often find ourselves saying, “We told you so!” It must sound like a kind of grim satisfaction. We’ve been saying nursing homes and other kinds of congregate care for the elderly and disabled are terrible – to be avoided or even abolished. Now the pandemic is proving it. But it gives us no satisfaction. It gives us cold terror.

But we really did tell you so.

2. Covid Spurs Families to Shun Nursing Homes, a Shift That Appears Long Lasting
Anna Wilde Mathews and Tom McGinty, Wall Street Journal - December 21, 2020

It’s interesting to see how news coverage of the COVID-19 pandemic reports things that are obvious to much of the the disability community, portrayed as new and revelatory. It’s accurate though. While the move away from nursing homes and other congregate care and towards home and community based services has been happening for decades, it’s not yet a popular trend visible to most people who aren’t deeply involved in the issue. Let’s hope this Wall Street Journal article is right and the move away from congregate care is real and durable – not just a longstanding disability activism goal.

3. Handicap accessible ramps in high demand to keep elderly, disabled in their homes and out of assisted living
Michael Paluska, WFTS Tampa Bay - July 22, 2020

The message here is a little mixed and confused, and the story is local to Tampa Bay, Florida. But the overall point I think is clear. The people in the article aren’t all that clear about the connection between the COVID-19 pandemic and ramps to make homes more accessible. One woman seems to be saying that her ramp allows her to go out during the pandemic when otherwise she’d have to stay home. On the surface that seems like it could be as harmful as helpful, since staying home in a pandemic is in some ways a positive. But I think the broader point is that accessibility overall in the home helps put off or prevent the need for institutional care, and institutions like nursing homes and “assisted living facilities” are breeding grounds for COVID-19 infection and death, as the first two articles illustrate.

3 Weekly Disability Reads

Every Sunday I post links to three things about disability that I read, heard, or viewed over the previous week, with some notes of my own added.

December 14-20, 2020

1. As Hospitals Fear Being Overwhelmed By COVID-19, Do The Disabled Get The Same Access?
Joseph Shapiro, National Public Radio - December 14, 2020

This is tough to read and listen to, but it’s essential. The number one specific fear among people with disabilities during this whole pandemic is being deliberately denied treatment for COVID-19 because of our disabilities, through emergency “triage” measures instituted by overwhelmed hospitals. And while some progress was made a few months ago on getting these kinds of measures ruled discriminatory and illegal, not everyone has gotten the memo. Now hospitals are again facing the kind of overcrowding that triggers these measures. What this article and radio story by veteran disability reporter Joe Shapiro does is give policies and practices that survive through carefully-tended anonymity a real face and a real life. It also demonstrates exactly how disability in the medical field actually occurs – the actual words people say and the ideas about disability those words reflect. It’s shocking but, sadly, not entirely surprising to anyone who has experienced any sort of ableism.

2. Four Months That Left 54,000 Dead From COVID in Long-Term Care
David Hochman, AARP - December 3, 2020

It’s a real breakthrough for a prominent, mainstream aging organization like the AARP to come out so decisively against the the very existence of nursing homes. It’s one thing to criticize a few specific facilities and their operating corporations for especially egregious abuse. It’s quite another to note that while bad decisions at all levels have made the pandemic worse in these places, it’s the nursing home model itself that is the core of the problem. Abolition of nursing homes probably isn’t feasible in the foreseeable future. But a strong move away from them is quite possible, by everyone involved including families, the medical and social service communities, and elderly and disabled people themselves. The disability community has been out ahead on this issue for decades. It’s a hopeful sign if the AARP is starting to catch up. Now if we could get stronger statements like this from the large, prominent developmental disability organizations against group homes and larger institutions – and the same from the mental health profession about their congregate care models – we’d really be making some progress.

3. How We Can All Celebrate the International Day of Persons With Disabilities
Madison Lawson, Allure - December 3, 2020

It’s good to see a “mainstream” magazine, (not disability specific), publish a disabled writer well matched with its core audience talking specifically about how to learn about disability issues and culture through social media. Sending newcomers to Twitter, Instagram, Facebook, and YouTube to learn more about disability may seem risky these days, but these platforms mostly do okay on disability matters, at least so far.

3 Weekly Disability Reads

Every Sunday I post links to three things about disability that I read, heard, or viewed over the previous week, with some notes on why I found them interesting and worth sharing.

December 7-13, 2020:

1. Calling for Home Care
New York Caring Majority - December 2020

This is the rare disability advocacy video that successfully blends often competing priorities and impulses. It highlights both the struggles of underpaid and under-recognized home care workers, and the people they serve. Both the care givers and care users have a voice and they support each other, instead of just one group speaking on behalf of the other, or in some sort of passive conflict for focus. And the video itself invokes the viewer’s emotions and dramatizes the stakes, without appealing to pity.

2. Rebecca Lamorte’s Subway Accident Launched Her Political Career
Rebecca Lamorte, Teen Vogue - December 7, 2020

Over the last few years, Teen Vogue has been giving a lot of space and quality writing to disabled people and disability issues. This piece is a great example. The writer’s story is broadly relatable, and the message about disability is right on target. Again, you feel something for Rebecca’s situation. Yet, you’re left not with a useless sadness, but with a better understanding of what actually makes life unnecessarily hard for people with disabilities. The article also demonstrates the direct connection between disability and politics. It’s a connection disability activists are already familiar with, but which can still feel radical to the casual observer. There can’t be too many stories like this.

3. Why autism training for police isn’t enough
Elissa Ball & Jaclyn Jeffrey-Wilensky, Spectrum - November 26, 2020

Debates over what to actually do about police violence against disabled people – especially autistic people and people of color – usually involve simple binary conflict. On one side are advocates who promote “police training” as a simple, straightforward answer to what are often viewed as tragic misunderstandings. On the other side are those who view “more training” as worse than useless – as misleading diversions from the real problem, which is the police profession’s core hostility to people of color and anyone perceived to be even slightly strange or threatening. This article won’t satisfy anyone. But at least it gives due consideration to many angles on the issue, with a focus on what might actually be done that would be actually worth doing.

3 Weekly Disability Reads

Every Sunday I will be posting links to three things about disability that I read, heard, or viewed over the previous week, with some notes of my own added.

Week of November 29 to December 6, 2020:

1. If You Are Going to Talk About Neurodiversity, Get It Right
EJ Willingham, Divergent by EJ Willingham - December 4, 2020

It’s good to see the most common arguments against “neurodiversity” dealt with in detail, instead of just being condemned. I’m also on the lookout for good explorations of the other ways that parents of kids with disabilities end up ignoring or opposing disabled adults. It’s not just about different understandings of autism, although that’s probably where the conflict is most intense. There are other things going on in parents’ minds and emotions ... and in disabled adults’ minds and emotions too … about all kinds of disabilities and disability issues. Since we should be tighter allies than we are, it’s a problem well worth deep thought and discussion.

2. Dongle Or No Dongle?
Tourettes Hero - November 1, 2020

This is a particularly effective exploration of what advocate Liz Jackson calls “Disability Dongles” ... i.e. cool looking gadgets that are supposed to help disabled people but really don’t. This article in particular provides some essential advice for anyone with an idea for a new disability device or product. It mostly boils down to making sure actual disabled people are involved. It’s no guarantee, but it’s a good rule of thumb for any disability venture.

3. The Crown's learning disability storyline highlights painful lack of progress
Nicola Clark, The Guardian - November 26, 2020

I thought knew a lot about the Windsors, but in this season of Netflix’s “The Crown,” I was frankly astonished to see the story of several members of the Royal Family’s in-laws, (the Bowes-Lyons), who were intellectually / developmentally disabled – or as they are termed in the UK, “learning disabled.” Here I think it’s actually kind of an advantage that “The Crown” is understood to be somewhat to very factionalized. Whether or not anyone in the Royal Family was ever actually shocked and appalled by Nerissa and Katherine being stuck in squalid institutions for their entire lives, as they apparently really were, it’s helpful to witness the Princess Margaret “character” being so outraged about it. What hit me hardest and in the best way was when Margaret’s mother, Queen Mary said, “It’s complicated,” and Margaret replied, “No, it’s not! It’s wicked, and it’s cold-hearted, and it’s cruel!” To me, this is the answer to every rationalization of outdated or inhumane approaches to disability policy and services. People are always saying, “It’s complicated,” and we keep saying, “No, it’s not!”

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?