Imagining The Next Apple Event

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

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

Doing justice to disability: the upside of TEDx’s Stella bungle

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

(Via @Criptiques)

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

ASAN Calls For Autism Air Carrier Guidance From Department Of Transportation

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?

5,000 disabled adults sexually abused in past two years

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

Complaint: Commuter buses yanked disabled access for bar seating

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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Netflix Makes A Good Decision

Netflix Begins Audio Description for Visually Impaired

Tracy Wright, Netflix US & Canada Blog - April 14, 2015

One good thing about terrible, self-sabotaging decisions by high-profile corporations as that they can usually be reversed very quickly, with the right kind of targeted advocacy. This appears to be a great start, and I am especially glad Netflix won’t stop with just Daredevil.

Congratulations to all the bloggers and petition signers who helped make this happen. And biggest thanks to the folks at the Accessible Netflix Project, who have been working on this literally for years.

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Another Case Of Neglect ... What's The Story?

Police ID Mom of Quadriplegic Son With Cerebral Palsy Left in Philly Park

Alison Burdo and David Chang, 4 NBC Washington - April 12, 2015

Confronting another attempted murder of disabled man

Elena Rose Levy, Angelic Eve: Where Snakes Are Not Scary, Neither Am I - April 12, 2015

What to do with another disability neglect story?

Let’s start by noting that the way this story is covered, “this young man” has no name, and no thoughts or information about what has happened to him. I understand that his CP is on the “severe” end of the scale. He’s apparently unable to speak, though with CP, people could easily be mistaken about his ability to communicate. As for his name, it’s possible his aunts have asked for the moment that it not be released, as a way to protect his anonymity. But in this case, it seems like a weird choice, since his mother’s name is now public knowledge.

Let’s also note how “suffers” is used in the story, not to describe what happened to “him”, but as a simple, habitual modifier to Cerebral Palsy … as in “suffers from Cerebral Palsy”. It seems very likely that “he” has suffered a lot, but more from his mother’s neglect and bad choices, not necessarily from his CP.

All that is technically a meta-conversation about journalism, and not precisely what the big story is here. But as I have said before, these journalistic habits subtly reinforce the kind of thinking about disabilities that contribute to these kinds of terrible incidents. When you assume people who have certain kinds and combinations of disabilities as little more than inert teddy bears or giant Tamagochis, it’s actually not that long a walk from, “How dare you neglect him?” to, “What’s the point anyway?” Put another way, whether motivated by kindness and pity, or by selfishness and ignorance, removing a disabled person’s agency and personhood is harmful, sometimes deadly.

To me, this story is also another in a long, depressing line of stories about the all-or-nothing mindset many families have about “caring for” disabled “children”. They think they only have two socially accepted choices. They can either devote the rest of their lives to caring for the “child”, or they can “put” the child in an institution. They see no middle ground, and certainly don’t seem to ever imagine their son or daughter having some agency for themselves, and living at least somewhat independently with their own support services, and not dependent on family.

Finding both institutionalization and life tied to an adult child unacceptable, some of these parents get weird and self-deluded, and abandon them, or kill them, telling themselves that it’s a mercy for the disabled person, or leaving a blanket and a Bible, equally useless and pathetic gestures. Of course, it’s also possible that in some cases, perhaps this one, the parent involved is just massively selfish or stunningly ignorant. We are angry at them for shirking their responsibility, but then we think maybe it wouldn’t have been any better for them to keep providing what was probably terrible care in the first place.

What pricked my emotions more than the news story itself was Elena Rose Levy’s blog post, where she notes that being physically abandoned is a common nightmare of so many young disabled kids and teens. I don’t remember having that specific fear. I do remember often feeling physically vulnerable and dependent in a way most of my peers did not. There was a long stretch of time when I think I saw my world as narrower, my life choices limited, because of a vague feeling that I would always need “care”, which meant that I had to be careful to be a certain way in order to secure that care.

Which brings me back to the issue of this nameless 21 year old “child’s" point of view. I kind of appreciated the blunt comments from the neighbor lady in the news story, but I want to know what the the disabled guy actually thinks. I guarantee, he thinks something worth hearing about.

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Making Accessible Campaign Propaganda (ahem) Materials

'Candidates should encourage disabled people to vote' Minister says

BBC News - March 26, 2015

I am not aware of anyone in the United States making a high-profile, publicized attempt to produce political campaign materials specifically for voters with intellectual disabilities. It sounds like a worthwhile thing to do, and a pretty interesting task.

For one thing, there are so many types and shades of intellectual disability ... which I believe is what the BBC means when they say, "learning disability".

And how, exactly, does one "translate" a party platform so that intellectually disabled people can understand it? What does "simplifying" mean? Do you take out all the metaphors and colloquial phrases? Do you use shorter words and fewer compound sentences? How does "large print" help an intellectually disabled person with (most likely) normal eyesight?

Or, is it about more than grammar and font size? Are there social studies texbooks designed to teach adults with intellectual disabilities what "liberal", "conservative", and "libertarian" mean? Do you try to alert intellectually disabled voters to opaque, misleading slogans that all sound good, even when they contradict each other?

I would really like to learn more about this.

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Thinking About The Apple Watch, Drooling Just A Bit

Apple Watch

The Apple Watch seems useless — just like the first PCs and smartphones

Timothy B. Lee, Vox.com - March 10, 2015

Covering the Apple Watch Launch as a Blind Apple Fan

Francie Diep, Pacific Standard - March 10, 2015

I won’t be buying an Apple Watch anytime soon. A new iPhone might be in my future, but not an Apple Watch, though I have to admit, it looks pretty cool. Apple products always at least look good.

It does look like the Apple Watch might have a couple of advantages for disabled people over other “smart” devices:

1. You wear it on your wrist, so it’s probably easy to get to and hard to lose. You can also probably mount it in a dozen other creative ways ... strapped to a wheelchair armrest, hung on a chain around your neck, wrapped around a cane.

2. It's got those sensors on the back that can detect your heart rate, and motion sensors that can tell when you are standing, sitting, walking, running, etc. This suggests could monitor some chronic health conditions. If those sensors are possible, others might be not far off, like sensors for blood sugar (diabetes), oxygen levels (asthma), or maybe even mood.

An iPhone could be made that would accomplish these things pretty easily. Apple could add diagnostic sensors to the back. Third-party companies could sell all sorts of add-on straps and holders to secure the phone in a wide variety of situations and orientations. Still, the watch’s size and convenience may offer advantages no phone or tablet can match.

I doubt the Apple Watch as currently conceived and marketed will revolutionize life for disabled people, but it does seem like the kind of multipurpose gadget that creative minds could adapt and put to use in ways Apple might never have thought about.

For example:

Voice Output … It would be great to be able to record and store lots of phrases for daily use by people with speech impairment, easily retrieved and then played on the watch. It may already be able to do this in a rough sort of way, using the watch's speech to text feature. Note: There seems to be some ambiguity about whether VoiceOver will work on the Apple Watch. VoiceOver is a feature built into all current Apple devices that audibly “reads” whatever is on the screen, mainly for the benefit of visually impaired users. It seems to me very unlikely that VoiceOver wouldn’t work on the Apple Watch, but we’ll have to wait and see.

Voice Input … Siri comes standard with the Apple Watch, same as the iPhone, and you can control all of these devices with your voice, using Siri. A few tweaks here and there to Siri and maybe other apps, should easily make the Apple Watch fully voice operable. This could be extra helpful for people who can’t use their hands, or have difficulty working with really small displays and icons.

Environmental Controls … The Apple Watch will have a built-in app that turns it into a remote control for your TV and music devices. Could it be that difficult for someone to design an app that controls automatic devices … such as door and window openers, lights, thermostats, even an adjustable bed ... throughout a house or apartment? Environmental controls for disabled people have been around for years, but tend to be expensive and tied to very specialized and exclusive control systems. A wrist-based controller that adjusts to multiple systems seems like a natural.

Identification … The health app on the iPhone already has a feature that stores your personal medical information for emergency retrieval. A similar app could be easily designed to store information and helpful instructions for people with disabilities that sometimes impair communication and require help from random strangers, not just EMT and ER doctors.

Personal Emergency Response … Personal Emergency Response Systems already use pendants and watch-like controllers, so again, creating apps for these services should be easy. It may even have the basic capability of direct two-way verbal communication. At minimum, it seems capable already of sending a verbally dictated text message to anyone with a receiving app.

The Apple Watch is going to be expensive, and I’m not even thinking about the $10,000 gold “Edition” edition. But iPhones are expensive, too. The thing is these devices do more than one thing, which makes their higher prices a reasonable value, even for people without a lot of money. If programs like private health insurance, Vocational Rehabilitation, and Medicaid were to see the adaptive value of such devices, they might come within reach of people with even the highest adaptive needs, and lowest incomes.

Of course, there are also going to be features of the Apple Watch that are basically already fully available through other devices, either existing iOS apps, or websites any Apple device … or any computer device at all … can access. Once you see the thing as a platform more than a purpose-built device, the possibilities do seem endless.

So, I’m not buying an Apple Watch yet, but I know better than to say “never”.

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Jane Hawking’s Not-Bad Idea

Jane Hawking: support disabled people using money from tax-avoiding firms

The Guardian - March 11, 2015

“The Theory Of Everything”, the film about Steven Hawking that won Eddie Redmayne an Oscar this year has caught a lot of flack from the more activist parts of the disability community, including me. In brief, we’re tired of non disabled actors winning awards for playing disabled characters, especially when disabled actors can’t get work. Plus, we hate to see tired old clichés repeated, such as the scene where Hawking … while being recognized for his astounding achievements in physics … dreams of walking again. Forget being one of the most recognized and admired physicists of all time, I just wish I could walk over and pick up a pencil.

All that aside ...

I was really impressed that Jane Hawking, Steven’s first wife who is also portrayed in the film, used a gala reception at Buckingham palace, for a very traditional disability “charity”, to suggest that what disabled people in the UK really need is better support from their government. Usually, these charity “dos” are all about raising donations for a cure, and are carefully apolitical. It’s one reason why so many disability advocates shy away from traditional charities.

Jane Hawking’s proposal is pretty vague … to use funds from companies that don’t pay taxes now to fund better support services. But it is radical and refreshing for her to even mention systemic change and economic justice in a high-profile charity event.

For what it’s worth, I don’t think we have ever heard anything so specific and political from Dr. Hawking himself, who when he talks about disability tends to stick with a very personal perspective and a somewhat blandly neutral tone. I’ve always kind of liked that about him, that he neither bemoans nor romanticizes his disability. It would be helpful, though, if he had more to say about disability in general, and the status of disabled people in society.

Anyway, I just think that Jane Hawking deserves some praise for her observations, and where and when she chose to make them. More like this please.

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Don't Be Distracted

‘Retard, animals!’ New York principal caught on tape screaming abuse at special needs students

David Ferguson, Raw Story - February 10, 2015

The thing to remember about these incidents where people in caregiving positions lose their shit and spew vile ableism, is that it’s all too easy to focus on the awfulness of the individual.

I’d bet real money that behind this principal’s rant is what she considers a coherent, probably brave and rational philosophy of disability and education. It seems like she believes that most of her students are horrible monsters … probably not truly “disabled” in her eyes … who are far too coddled and indulged. She seems to think that the kids are deluded, too, and need to be told in the harshest terms that they are regarded by others as inferior, and will continue to be so unless they shape up. She’s there to whip them into shape and tell it like it is. If this is anything like her thinking, she is not alone.

It’s also important to note that this kind of ideology and behavior flourishes much more easily in segregated, disability-only “special needs schools” and classrooms. Fewer people see what happens there every day, and the “special needs” moniker is like a protective halo, shielding everyday practice from scrutiny and criticism.

The terrible irony, of course, is that there are probably quite a few families who chose to place their kids in this school because they feared they would be ground down and bullied in a “mainstream” environment. Separate and special often sound “safe”, when in fact, they are just as often the exact opposite.

It's about more than a terrible person. It's a terrible system.

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The Definition Of Ableism

Baby Taken Away Because Mom’s ‘Disabled’

Elizabeth Picciuto, The Daily Beast - February 10, 2015

This is a great article on an important development in the legal rights of parents with disabilities.

This is how disability discrimination works. The whole issue is based on the premise that any disabled parent is less able to be a parent than any non-disabled parent. Yes, it appears the social workers cited a few specific instances of parenting flaws, but they are so minor and occasional that it looks like they sought out those incidents in order to check enough boxes to justify their pre-determined decision.

I suspect what happened is that one or two specific HHS workers got it into their heads that the mother is a mess of some sort … not inspiring confidence or some such “vibe" … and they’re sticking to their guns out of a mixture of what they must view as bravery and highly personal conviction.

For what it’s worth, I can imagine myself doing something like this, too. I can picture myself meeting a young woman and her parents and just not liking them, or maybe being weirded out by them. Maybe they’re super-religious. Maybe they come off as big time nuts-and-berries hippies. Maybe they don’t believe in vaccination. Maybe it’s one of those families that's adopted like 15 disabled kids. There are all kinds of things that might set off my personal alarm bells. But none of them alone would justify taking a child away from her mother and giving her to foster parents. The difference here is that conventional wisdom still supports the idea that disabled people make suspect parents.

Again, that’s the definition of disability prejudice … of ableism.

The part that really baffles me is how the role of the grandparents seems to have been forgotten. Did the social workers take a dislike to them, too? Or, did they initially not even realize they were in the picture, and never reevaluated when it became clear the mother wasn’t even planning on raising her child alone?

Finally, take a look at some of the comments to the article. Of course she’s incapable. The baby will suffer so she can have her rights. She’s probably going to crank out more and more babies. Lovely stuff, all based on broad generalizations and not at all on the specifics of this situation.

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Caught Between Sides

Disability Advocates Sharply Critical Of Plan To Ease Testing

Michelle Diament, Disability Scoop - January 23, 2015

I am only superficially familiar with the basic outlines of current debates over Education. It seems like one side wants to make K-12 education a bit more rigorous, supposedly because some sort of slack has crept into the system. Another side worries that the “higher standards” people are mostly interested in lots and lots of standardized testing and in de-clawing teacher’s unions, not so much about actually educating kids better.

Kids are caught in the middle, and if anything it’s worse and more confusing for kids with disabilities. It seems like the “special education” debate is shifting a bit, in time with the larger conflict.

Special Education debates used to be all about self-contained, segregated placement vs. “mainstreaming”. Sadly, these are still active issues, fought underneath the surface with all sorts of euphemisms. Now, though things have shifted a bit so that there are two other camps, too. One says that by and large, disabled kids are much smarter and more capable than schools and even parents realize. More disabled kids should be taking tests, passing regular classes, and getting real diplomas.

The other says that disabled kids, of all kids, should be spared the humiliation of being pushed through the test-taking wringer like everyone else. It’s easy for ivory-tower reformers to simply assert that 90% of disabled kids can get regular diplomas … can that really really true? Or is it just something they say to keep everyone on their toes, or because it fits with their preconception that “today’s education” stinks?

Whatever you think about tests specifically, isn’t it possible that most disabled kids can achieve more than is typically asked of them in school? Shouldn’t we err on the side of competence? How many generations of kids have we let slip though without gaining skills they might really have gained, if we’d pushed them a bit harder and been a bit more creative? At the same time, will "higher standards" just mean shoving disabled kids willy-nilly through the same system, without disability-specific supports or accommodations?

I honestly don’t know the answers to these questions.

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Refutations

It’s good to see a variety of outlets coming out to defend Social Security Disability and refute Rand Paul’s nonsense:

Stodgy old newspapers ... LA Times: "Bias against the disabled is as American as apple pie"

Hip online magazines … Vox.com: "Rand Paul says "over half" of people on disability have anxiety or a bad back. Nope."

Disability bloggers … Smart Ass Cripple: "Invasion of the Fake Cripples"

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For What It’s Worth ...

PolitiFact dismantles Rand Paul’s claims about Disability.

They don’t address the social or political implications of his recent statements. They don’t try to judge either way whether certain kinds of disabilities are truly disabling or not. That’s good though. PolitiFact isn’t any more qualified to assess the experiences of different disabilities than Sen. Paul is. They are fully capable of that on strict statistics alone, Sen. Paul is wrong, and that’s saying plenty.

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Disability Fight: Followup

Rand Paul: Disability Insurance Wasted On People With Anxiety And Back Pain

Igor Bobic, Arthur Delaney, Huffington Post - January 14, 2015

Pretty much like I said …

Sen. Rand Paul couldn’t have laid out a more appealingly wrong case that Social Security Disability is broken:

“What I tell people is, if you look like me and you hop out of your truck, you shouldn’t be getting your disability check. Over half of the people on disability are either anxious or their back hurts. Join the club,” he added. “Who doesn’t get up a little anxious for work every day and their back hurts. Everybody over 40 has a little back pain.”

The problem isn’t that he is wrong, that, in fact, many people are severely debilitated by “anxiety”, and that “back pain” can be devastating. The problem is that what he says here is exactly how a lot of otherwise decent people really think about disability, and about Social Security Disability. In fact, there are probably a lot of disabled people who think this way, too.

The other big potential problem is that Rand Paul, specifically, gets way more benefit of more doubt than most Republicans, because he’s a “Libertarian”. He’s a U.S. foreign policy skeptic. He’s a rare, if inconsistent voice agains the National Security State. He’s favorably disposed towards pot legalization and against the War On Drugs. Sen. Paul is an appealing figure to people who crave someone with a “different” approach to the usual issues, but who aren’t that interested in following ideas to their logical policy conclusions.

I don’t know how to combat this kind of rhetoric, but we’d better figure out soon, because I think we’re going to hear a lot more of it in the near future.

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Happy New Year!

I thought about doing a 5 Predictions For Disability World in 2015 post, but honestly entire years go by without anything truly significant happening in the disability community as a whole. There are always plenty of stories of individual triumph, tragedy, and injustice, but real, tectonic changes in the conditions under which we live are very rare.

What do we think? Will anything really big happen in 2015?

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Stella Young Memorial

Stella Young memorial: 'Stella made this place better ... she made Australia better’

Melissa Davey, The Guardian - December 18, 2014

A memorial event for Stella Young was held on Thursday, December 18, in the Town Hall of Melbourne, Australia.

I don’t have anything to add really. Just watch the videos.

Nelly Thomas

Graeme Innes

Stella Barton

The Boy With The Cane. Or, What The Heck Is A "Pool Noodle"?

School punishes blind child by taking away cane and replacing it with a pool noodle

Fox2 Now St. Louis - December 17, 2014

So, first I had to look up what a “pool noodle” is. Turns out it is a long, thick, semi-flexible “stick” made of squishy styrofoam, used as a toy or perhaps a sort of float by kids in swimming pools. Looking at pictures of “pool noodles”, I can see right away what the school staff were thinking. It’s long and semi-rigid, so it could, in theory, provide some of the sensory feedback of the canes used by blind people. At the same time, it is made of a material that can’t really hurt anyone, even if used as a deliberate weapon. I’d bet real money that there is at least one person at that school who really, honestly thought they had come up with a brilliant solution to a perceived disciplinary problem.

Of course, one suspects that the “problem” was either overblown or nonexistent. Dakota’s parents say it was all a misunderstanding … that the bus attendant might have seen him raise his cane and assumed it was to hit someone.

To me, this isn’t the issue. Dakota is still a young boy. It’s entirely possible that on occasion, he’s used his cane in questionable ways. It’s also possible he’s still learning how to control his cane, and not accidentally bump it into people or trip them up. The point to me is that the school should have a more thoughtful set of guidelines and procedures for how to deal with Dakota if he should misbehave, as most 8-year-olds misbehave from time to time. And a central tenet of any disciplinary plan should be to never take away an assistive device a child depends on for independence and mobility. This would apply to canes, crutches, a speech device, a wheelchair, or any other equipment that helps them with their particular disability.

It seems to me that part of the formula for kids like Dakota should be some sort of peer counseling “real talk” where someone he trusts … maybe a blind adult ... tells him, as a friend and ally, that assistive devices should never be used as weapons or to cause mischief. Teach disabled kids that they have an absolute right to their devices. They are not revokable privileges like a cell phone. But they also have a responsibility to use and look after their devices with great care. That seems like an essential bit of “growing up” that disabled kids, in particular, have to do. In a way, it’s part of learning self-advocacy.

As a side note, I found it kind of appalling that apparently, the cane was supplied by the school, which is one of the excuses the school used for taking it away. I suppose it’s good they provided the cane, if Dakota’s family can’t afford one, but also reminds me of all the ridiculous angst some school administrators go through over fears that school-provided assistive devices will be “misused” … including being taken home. Especially with something like a cane, whoever pays for it ought to just give it to the person who needs it, with no strings attached.

Update: Via @SFdireworlf, Dakota's school district apologized for taking his cane away. 1. I hope the district also agrees on a disciplinary policy that excludes confiscation of adaptive devices, and 2. I hope Dakota gets a cane of his own.