January 6, 2021

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I posted this on my Facebook page earlier today, about yesterday’s events in Washington, DC …

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I didn’t post anything during yesterday’s events because:

1. I was too stressed out by it all, and

2. I wanted to process a bit before adding my own words to stuff others were already saying.

I still don’t know what to say that hasn’t already been said quite well. I’ll just share this.

Yesterday afternoon I watched Sen. McConnell’s speech refusing to go along with objections to Electoral votes, felt a bit relieved, and turned it off because my grocery delivery had come. I listened to a favorite podcast while I sorted and put away my groceries. Then I looked at Twitter and everything had changed. Not really everything had changed of course ... that’s probably going to be part of the point. But you know what I mean. One minute it’s THIS, the next minute it’s THAT.

I could make lots of observations about:

  • The fragility of democracy ...

  • How we ALL both over and underestimated Trump ...

  • How the Capitol Police were deployed and performed yesterday vs. during the Black Lives Matter protests earlier in 2020 ...

  • How the Capitol Police were deployed and performed yesterday vs. when disabled protesters demonstrated to protect Medicaid and the ACA in 2017 ...

  • Whether we need technical reforms in the transition process ...

  • DC statehood ...

  • How much of Trumpism is cynical and how much is sincere, (and how much that does or doesn’t matter) ...

  • The differences between defensible protest and indefensible insurrection ...

But I’ll leave it at that for now. Stay safe everyone. Get some rest. Pay attention, but try to relax a little too.

Sagamihara

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I want to write about the intentional murder, by planned, methodical stabbing, of 19 disabled people, in a “facility” in Sagamihara, Japan, by a former worker at that facility. I want to write about it, but I don’t want to just repeat everything so many others in the disability community have already said. So, here is a list of links to the articles, essays, and blog posts I have read so far:

#CripTheVote: Violence & Disability
Alice Wong, Storify - July 25, 2016

Note: This Twitter chat happened before the incident in Japan, but it couldn’t be more relevant to it.

Ableism is not “bad words.” It’s violence
Lydia Brown, Autistic Hoya - July 25, 2016

Ableism is Deadly: Mass Murder in Japan
William Peace, Bad Cripple - July 26, 2016

Violence, Disability, and the Lessons of Sagamihara
David Perry, Pacific Standard - July 26, 2016

Japan, Hate and 12 days
Dave Hingsburger, Of Battered Aspect - July 26, 2016

This Is What Disability Erasure Looks Like
Emily Willingham, Forbes - July 27, 2016

Ableism, Violence, and Sagamihara
Alice Wong, Disability Visibility Project - July 27, 2016

I will add this …

I think one reason why neither news media nor social media really seemed to know what to do with this massacre is that there's a certain idea people have about ableism, or disability-based prejudice.

It’s the idea that ableism is somehow a less severe form of prejudice that comes more from ignorance, unfamiliarity, and bad social habits than from real fear, superiority, or hate. It's a comforting idea, because it suggests that there is a simple solution to ableism … not easy to accomplish maybe, but easy to imagine. It’s the idea that ableism can be fixed by better, more refined etiquette.

Certainly, education and awareness can help with the most common and merely annoying aspects of ableism. You might be able to get some people to stop saying unintentionally upsetting things about disabled people. Most people disapprove of being mean to disabled people. That’s why Donald Trump’s juvenile mockery of a disabled reporter’s unusual voice, appearance, and movements is such a political winner for Democrats. However, the roots of ableism are much deeper and insidious than personal insensitivity, and more harmful by far than hurting disabled peoples’ feelings. Ableism is based, in part, on a belief that disabled people don’t belong. We are defective. We are untidy. We get in the way. We demand more than our share. We make people sad.

Even when we are praised, it’s usually because we have managed to overcome these supposedly inherent flaws to become less disabled, less what we are, and more what people are supposed to be like. That leaves the underlying premise unquestioned.

As several of the writers linked above note, terrible acts like what happened in Japan this week can’t be dealt with straightforwardly because most people hold some of the very same beliefs that motivated this man, even if they don’t act on them as he did. The man was apparently regarded as “insane” and briefly hospitalized, not because he believed as he did, but because the social norms that usually keep these views in check were not working with him. He is now easily dismissed as an anomaly ... horrifying, but unique. This allows his fundamental view of disability to go mostly unexamined, and allows everyone else to view his actions as having no broader meaning, no message other than “Dear gracious me!”

His actions do have broader meaning. His beliefs are quite common, even though for most people they are diluted and fleeting. I am not worried that attacks like this will start happening all over the world now … though that is a possibility. I am more worried that the beliefs about disability that motivated them will continue to generate less spectacular acts that are, in aggregate, even more harmful and far more commonplace.

We all need to realize that ableism is just as bad as every other ‘-ism’. Ableism isn’t different, or special, or only about lack of courtesy. As William Peace says in his blog post linked above says, "Ableism is deadly." It is deadly even when it doesn’t actually kill.

*Note: I got the illustration above from the Twitter account of Carly Findlay @carlyfindlay. I don't know where she got it, but it seemed massively appropriate.

Beach Break

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This seems like the wrong couple of days to continue writing about threats to disabled people. Not that racially-connected police killings and killing of police make threats to disabled people less important. Just that I feel like it’s a better idea to allow a couple more days before digging again into darker side of ableism when the darker side of racism deserves undivided attention. I’ll pick up the topic again tomorrow.

In the meantime, a Facebook friend of mine has alerted me to an interesting accessibility story I’ll share instead.

A beach in North Carolina is installing “accessibility mats” that make it easier for wheelchairs and people with impaired mobility to navigate sand. It seems like a natural idea to me, and a notch better than those beech wheelchairs, which can only help one person at a time. It puts responsibility onto the facilities rather than on the users, which is of course a bedrock principle of accessibility.

The linked news story includes a video, but it’s not very good, and I’ve found a much better video about the same thing that actually shows how the mats work. I’m embedding it below:

Guns and Mental Disability

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Black silhouette of a pistol

I don’t think it should be easy for people with mental illness to get a gun. But then I don’t think it should be easy for anyone to get a gun.

When I first heard that President Obama’s new initiative on gun control would include measures to prevent people with “mental illness” from getting guns, I had mixed feelings. On the one hand, I know that statistics on actual shootings don’t justify focusing on mental illness. On the other hand, on an individual level, I find it hard not to think that that it might be much better if someone with mental illness couldn’t buy a gun. If nothing else, it might cut down on gun suicides. Or so the reasoning goes, I guess.

Then I saw some of the details and was reminded just how bad well-intentioned policy can be. The plan would link gun buying background checks with records of people on Social Security who have “representative payees.”

Representative payees, (referred to as “rep. payees”), are people who are given the legal authority and task of managing the finances of someone deemed incapable of handling their own money. This can include people with mental illness, but also people with intellectual disabilities, autism, or traumatic brain injury. A rep. payee will receive a person’s Social Security check, and disburse the money to pay the person’s bills. If done right, and in the right situations, it can be a very helpful service.

Not for nothing, but given peoples’ weird ideas about these conditions, rep. payees can also easily be misapplied to people who probably don’t really need it … people who would probably manage their money just fine, with a bit of training and some informal advice.

Either way, justified or not, the cognitive ability to understand and manage personal finances is a ridiculously imprecise marker for figuring out who shouldn’t be allowed to own a gun. Choosing that mechanism really seems like an idea thought up by a policy wonk who knows how data systems and bureaucracy works, but knows nothing about mental illness or other cognitive disabilities.

If I had it my way, buying and owning a gun would be at least as complex and demanding a process as owning and driving a car. You should have to train for it, pass a test, fill out a bunch of paperwork, maintain insurance, buy renewals, and periodically do all or most of it over again. And as with cognitive impairment and driving, any restrictions should be very individually determined, and based on actual risks, not prejudice.

But if that’s not going to happen, imposing gun restrictions on people with rep. payees is more than just an incremental measure. It’s bureaucratically sloppy, and conceptually it threatens to turn informal stigma against mentally ill and cognitively impaired people into official policy. That’s a terrible idea … ineffective on guns, and possibly very effective in making discrimination much worse for mentally ill and cognitively impaired people overall.

As usual, the Autistic Self Advocacy Network explains the issue with crystal clarity.

ASAN Opposes Proposal to Link Gun Purchases to SSA Rep Payee Database
Autistic Self Advocacy Network - January 5, 2016

Imagining The Next Apple Event

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Apple computer logo and accessibility logo
I watched today's Apple Event, which included a major overhaul of the Apple TV system. I may find the new Apple TV hard to resist, but I'm going to try.

The new Apple TV will apparently run stand-alone apps. This suggests the possibility of using Apple TV, with its new Bluetooth remote and Siri-based voice controls, to run a full slate of household appliances and devices. This could make it the most elegant and complete home automation unit ever ... a blast for tech nerds, and a major liberation for people with significant physical disabilities.

Imagine turning lights on and off, opening and closing doors and windows, turning heat or air conditioning up and down, controlling kitchen devices, or flushing a toilet through voice commands or the flick of a thumb. That's what I'm talking about. It's not far fetched at all. Lots of companies already sell control devices you can plug into any standard appliance, and control from a central unit like a smartphone. It's just that right now it's a rather confusing and very expensive field. Apple is great at making things easy to use, and, if not cheap, at least reasonably priced and easy to pay for. Apple seems like the perfect company to make environmental controls an everyday, common reality, including for disabled people.

The problem is, I still don't know and I can't seem to find out whether anything like this will be included in the new Apple TV, or any of Apple's other product lines. If anyone knows about new apps and systems that maybe just didn't make it into the event, please let me know.

The last Apple Event, back in March, did include a lengthy demonstration of Home Kit, a suite of home appliance devices controlled mainly through an iPhone. However, the presentation was a bit confusing and I don't recall Tim Cook mentioning how useful these controls could be for disabled people.

Here is what I hope to see, maybe at the next Apple Event:

- A smoothly operating, flexible, and simple home appliance control app that will work on any Apple device, including the Apple TV.

- A control app designed by Apple, included free with all Apple operating systems. Users would pay only for each device control unit they want or need for their own homes, purchased from third-party developers.

- I would love to see Tim Cook introduce a person with significant physical disabilities to explain and demonstrate the app at the Apple Event. It worked well when he had Christy Turlington introduce the Apple Watch's fitness features.

I don't mean to imply that the system is only for disabled people. It's just that disabled people can dramatically illustrate, in a unique and memorable way, how useful environmental controls could be for everyone.

Apple is already a leader in making its products accessible to disabled people. I am still waiting for the company to turn it's products into tools to make the whole world more accessible for everyone, especially disabled people.

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The President Gets It

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First of all, make sure to move the slider over to just before the 1 hour mark, because up until then it’s all title screen. Also, don’t skip the introduction, because it’s amazing. It’s inspiring without being saccharine.

President Obama does seem to understand the fundamental concept of the ADA and of the disability rights movement. The story about his father-in-law is on point, admiring his perseverance, but pivoting to how much easier life would have been for him if the ADA had been law back then. As the young woman introducing the President noted, it’s not magic. It’s not even really about character. It’s about accessibility, accommodation, and equal opportunity.

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Another TED Idea

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Gerard Goggin and Katie Ellis, The Conversation - May 25, 2015


I had a little to say in Sunday's Weekly Reading List, about the TEDxSydney controversy, but mostly I was confused. Thanks the article linked above, I'm a little less confused, and a bit more interested.
"Key to the disappointment and anger felt by many in response to #stellaschallenge is a palpable irony. TEDx Sydney calls for conversations – but doesn’t recognise that there are already many conversations, relationships, and media, attitudinal, and social transformations underway. So, rather than speaking, genuine listening is required – often the hardest thing to do.
"Fabulous as Stella’s TEDx talk is, it’s time to go beyond just resharing it. We need to really listen to it. We must acknowledge and support the many other voices of people with disabilities."
I'm still not feeling the outrage others seem to feel, but I do agree the critics of TED's inital approach have made good points. It's not just the proposed methods, but the goal itself that should be re-thought, with Stella Young's specific points of view in mind.

Here's a thought ...

Why not keep it simple? Just sponsor a series of TEDxDisability conferences, in which all of the speakers are disabled people, representing a wide diversity of race, gender, sexual orientation, nationality, ages, disability types, and above all, diverse perspectives and and philosophies of disability, from the intensely personal to the hard-edged political, and all the tones, styles, and positions in between.

Let's hear from amputee mountain climbers and quadriplegic protestors; little person accessibility campaigners and blind entrepreneurs; youth self-help motivators and middle-aged policy analysts; artists with Down Syndrome and litigators with spinal cord injury; autistic teachers and Deaf rehabilitation counselors; bipolar bloggers and learning disabled journalists. It might even be worthwhile to hear a speaker who thinks "Insipiration Porn" isn't such a terrible thing. As long as all the voices are authenttic disabled voices, there is room for all of us to hear all sorts of ideas.

A new set of TED conferences sounds like more talking, less action, which is one of the problems with the original plan. However, I would argue that giving a high-profile, more or less equal stage to all of the branches and clans of he broader disability community would help us decide what our priorities really are. At the same time, the non-disabled community would learn a lot, just by listenning.

As I said, it's just a thought.

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Airline Incident Followup

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Autistic Self Advocacy Network - May 21, 2015

Last week’s discussion about the autistic teenager and her family being kicked off an airliner frustrated me on two levels.

First there were the commenters who seemed to mold and manipulate this particular  incident into their preconceived ideas about overly-demanding special needs parents inconveniencing everyone else in pursuit of unrealistic accommodations for an annoying child. The fact that the flight attendants ended up providing what the autistic teen wanted in the first place, which means they could have done it right away without argument, didn’t matter to people intent on making the obvious point that an airline can’t meet every conceivable need.

Second, nobody seemed to share my concern about the teenager’s mother, (who I think was right in her advocacy), using negative stereotypes of autism to try to get what she was after. On reflection, I think she may not have been as insulting and harmful as it sounded.

Throughout the dialog … in news articles, blogs, Twitter, and Facebook … I kept wondering what the Autistic Self Advocacy Network would think. I am pleased to see that once again, ASAN has presented an issue in a strongly worded but well-reasoned press release centered on a useful response … asking the Department of Transportation for clarification of the applicable law, the Air Carrier Access Act. This is more than expressing outrage. It might actually help.

It can’t be said enough. The Autistic Self Advocacy Network is the most articulate, effective, and authentic voice for autistic people in the country, possibly the world. If you have any interest in autism from any angle and aren’t familiar with ASAN’s work, you are missing out.

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What's The Takeaway?

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The Guardian - May 18, 2015

These kinds of stories are horrifying, but I also wonder what  causal readers and news-watchers think about them. It makes a difference how you interpret the problem:

- Do disabled people need more protection, oversight, and supervision?

- Is there something about care services and institutions that encourages abuse?

- Should families of disabled children be terrified by the “mainstream” world?

- Is it that people don’t really see disabled people as human beings?

- How many disabled people lack the capacity to stop or avoid abuse, and how many mainly lack the training and socialization to do so?

There might be some truth to all of these, but some conclusions are helpful, while others tend to lead to more problems, not fewer.

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Addendum:

I’m very glad to see that The Guardian’s Frances Ryan has followed up the news story with an editorial that provides a framework for thinking about this. Note in particular her reluctance to dwell too much on the idea of disabled people being inherently “vulnerable.” What still seems to be missing is a broader discussion of abuse that includes non-sexual abuse. Sexual abuse is particularly heinous, but many of the same interpersonal dynamics and lack of basic supports feed into other kinds of physical and emotional abuse, too.

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Why (Wheelchair Users) Can't Have Nice Things

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Black line drawing image of a bus
Kristen V. Brown, San Francisco Chronicle - April 18, 2015

There are probably people who understand the value of accessibility, but don't realize just how galling this particular story is for wheelchair users. It’s annoying enough when a new business “forgets" to factor in accessibility, then begs forgiveness because they’re new, just starting out, struggling, whatever. But this is an intentionally high-end company that actually bought some wheelchair accessible buses, then intentionally removed the accessibility features. I don’t think they did so because they didn’t want wheelchair users to ride their buses. I suspect it really was all about space. Where else were they supposed to put those juice bars?

I think there’s also some unconscious ableism at work here. Underneath whatever legal calculations the company might have made, gambling on their interpretation of the ADA, I’ll bet there were at least a few thoughts along the lines of: “How many wheelchair users are going to want to take an expensive, luxury bus to work anyway?” Because disabled people don't get cool, high-salary jobs, and we don’t really care about nice things, even if they do reek a bit of embarrassing hipsterism.

Of course, it’s also entirely possible that at least one person at the company thought, maybe for a few seconds: “Wheelchairs take up too much space anyway …” Seriously, don’t you think that thought went through somebody’s mind, even if they never put it into words?

I usually don’t wish failure on startup businesses. However, I hope for the sake of precedent that what the company did is found to be an ADA violation, and that this sets off a chain reaction leading the whole enterprise to go bust. I’m sure the resulting damage to the Bay Area economy will be quite … limited.

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