Thursday, March 20, 2014
Looking For Assistive Tech Reviews ...
Rob LeFebvre, Cult of Mac - March 13, 2014
I haven’t posted much on this blog about assistive technology, probably because I don’t use much myself. I am, however, an enthusiastic user of Apple products, and I’ve been somewhat aware of Apple’s incorporation of accessibility features into its operating systems in the last 10 or so years. There are two people I used to work with, both legally blind, who bought iPads and became total converts, but I don’t remember having heard much from other disabled people on their actual experience using the latest “smart phone” and “tablet” devices.
The apps and features look fantastic. What is the real-life verdict?
Rule Britannia!
Owen Bowcott, The Guardian - March 19, 2014
The UK Supreme Court has come out with a powerful decision affirming disabled peoples’ right to "liberty", regardless of their care needs. It is a decision that sounds similar to the United States Supreme Court’s Olmstead decision, but the language here is clearer and more easily understood by the average person, while Olmstead is strong, but constantly needs to be explained.
According to The Guardian, "In a test case on the conditions under which three individuals are living, the supreme court said that their medical conditions did not entitle the state to deny them their human rights."
The Deputy President of the UK Court said:
"If it would be a deprivation of my liberty to be obliged to live in a particular place, subject to constant monitoring and control, only allowed out with close supervision, and unable to move away without permission even if such an opportunity became available, then it must also be a deprivation of the liberty of a disabled person."
She added:
"The fact that my living arrangements are comfortable, and indeed make my life as enjoyable as it could possibly be, should make no difference. A gilded cage is still a cage.”
Traditionally, care and liberty have been regarded as competing priorities. The more care you need, the less liberty you can expect. The less care you need, the more liberty you have. This UK Supreme Court decision, like Olmstead, appears to break that connection.
The UK court says that instead of competing with the duty of care, ensuring greatest possible liberty is part of the duty of care. A person's need for care neither requires or justifies reduced liberty.
For example:
If you are a quadriplegic and need help with most of your daily routines, things might come to a point where care providers decide that the safest, most efficient way to make sure your needs are met is for you to be in a nursing home. Even if that’s not what you want, there are ways that you can be forced into this “choice”. Your care provider might refuse to provide care in your home, saying they don’t feel you are safe in your own place. Funders might decide that they would rather pay a nursing home fee than for home care visits. And if you have any kind of cognitive impairment, there will certainly be at least some “experts” who will believe that you should be more supervised. In all of these cases, the assumption is that you can either be free, or safe and cared for, never both.
This UK decision poses the radical but common sense notion that having freedom and choice is part of being cared for. Being able to live in your own place if you want iis as important as good nutrition, being able to go to the bathroom, and being free of physical abuse or neglect.
Unlike Olmstead, which didn’t spell out any particular actions to implement the principles it affirmed, this decision will apparently require each individual's care situation to be reviewed annually, specifically to determine whether the disabled person is being ensured an appropriate amount of personal choice and liberty.
I have to admit that I love that the pronouncement was made by the “Baroness Hale of Richmond”. It probably doesn’t impress most British people, but to me it sounds so much cooler and more weighty coming from “Lady Hale”.
Wednesday, March 19, 2014
Yet Another Video Of The Day
From what I see on the Mandeville Sisters YouTube Channel, disability is not the main topic, and this video might be a one-time thing. Whatever the case, Grace gives a very accessible explanation of her disability. I also like the way she demonstrates how a disabled person can have layers of feeling about their disabilities and the stigma that can come with it. It doesn’t bother you, but yes, it does bother you.
It’s also fascinating to me that Grace sees herself as quite different from amputees. She has always had a missing limb, while amputees lose one later in life. I have always thought that there are profound differences between people born with disabilities and people with acquired disabilities, but I’d never thought of it in terms of missing limbs. Her statement that “amputees are amazing!” just underscores how subjective all this admiration of the “other” is in the disability world.
One question though: What does “podgy” mean?
Another Video Of The Day
AmputeeOT on showering & bathing … but mostly about not slipping & falling!
Video Of The Day
Well, I'm done. This made me cry, not at the cuteness, but at the truth of it.
Parents of kids with disabilities need to hear from teens and adults with disabilities. We may not all have brilliant, wise, encouraging advice, but our existence at least suggests something about their children's futures. I think YouTube videos of this similar format could be a great way to make that connection. And it would work with any kind of disability, not just Down Syndrome.
More of this please!
Via BuzzFeed.
Tuesday, March 18, 2014
I Feel Like I’m Too Old For “Selfies”, But …
I am pretty excited by this rendering of my blog photo, done by the artist who runs a blog called Pretty Sick Art. She makes portraits of disability and chronic illness bloggers. I saw her portraits of several of my favorite bloggers, and when she offered to do them for anyone for just a donation, I thought, “Why not?” That was a few weeks ago, and I had pretty much forgotten about it, so I was pleasantly surprised to get a message this morning saying that my portrait was ready. I will be using it to replace my portrait photo on Disability Thinking, my Tumblr blog, and possibly my Twitter account as well.
Final Thoughts On The 2014 Paralympics
Alice Robb, The New Republic - March 17, 2014
I found this article in The New Republic fascinating. I think it is possible that the premise is true … that most disabled people either don’t care about the Paralympics or actively despise them. Unfortunately, the study cited to support the idea has a few problems:
1. It is British, so I wonder if Americans feel the same way.
2. It is based on a poll done in 2011, 3 years before these most recent Winter Paralympics, and a year before the last Summer Paralympics.
3. The survey was confined to “32 disability activists in the U.K.” Disability activists are always going to be disproportionately attuned to media stereotyping, and their general outlook probably isn't a good indicator of what disabled people in general find interesting or fun.
Ordinarily, I wouldn’t mind any of this, and the results are interesting in any case. I wonder, though, whether the country and timing are keys to the findings.
In 2011, Britain was soaked in Olympics hype. And my understanding is that the U.K. media really hyped the rather dubious notion that the Paralympics would serve a social purpose … that they would change society’s attitude towards disabled people. If I was a disability activist inundated by such promises from the non-disabled media, I think I would be dismissive of the Paralympics, too. That doesn’t necessarily say much about the Paralympics themselves. As a sports event, they are hard to argue with. It’s when people try to make them mean something to the disability community that things get sketchy.
The survey respondents’ comments make sense to me as anticipated problems from three years ago. They expected coverage to be condescending. They worried that the athletes would be held up as “super crips”. I'm not sure about the 2012 Summer Paralympics, but I don’t think this is how the 2014 Winter Paralympics turned out. Personally, I found coverage of the Winter Paralympics in Sochi to be surprisingly light on mawkishness. As I wrote a few days ago, I think if anything, NBC and NBC Sports’ Paralympic coverage was less sentimental than its coverage of the Olympics.
I do give credit to the article’s author, Alice Robb on one point. The article is the only place I have seen a mainstream journalist refer to the “super crip” idea, or the notion that there might be something condescending about coverage of a disability sports event. These are real concerns that most people aren’t even aware of, and it’s good to have them raised here.
It seems to me, though, that the reason disabled people don’t watch the Paralympics is the same likely reason most people don’t watch … because we don’t know when they are on. The "regular" Olympics are on for hours at a stretch, day after day. You don’t have to plan your watching. Just turn on the TV at roughly the same times each day, and you’ll see the Olympic sports of some kind. With the Paralympics, you have to schedule your viewing. And if you forget for awhile, and tune in a half hour late for whatever event is on, you have missed half of the coverage for the whole day. I ended up watching less than half of the events I fully intended to watch, mainly due to getting involved in other activities, and just plain forgetfulness. If people had to plan their Olympics viewing to hit one-hour time slots in the early afternoons, their ratings would plummet.
That’s why I’m intrigued by one of the suggestions in this article … merging the Paralympics with the Olympics. It would probably be a logistical nightmare, but I love the idea of Paralympic events simply being added to the Olympic Games. I think it would raise interest in Paralympics sports overall. I wonder if it’s a serious idea under discussion?
No, disabled people aren’t all fanatical Paralympics fans. We don’t get all teary and feel super empowered watching sled hockey … no more than anyone else does watching a good hockey game. There are philosophical reasons to be skeptical of the whole thing. Yet, we do get a little bit of a thrill … just a spark maybe … seeing people we can identify with in a very specific way competing in an elite sporting event. That’s the crucial factor to me. The Paralympics don’t feel like a therapeutic activity with the formal trappings of high performance, competitive sports. The Paralympics are authentic sports, full stop. What I took away from the Winter Paralympics coverage is that while a few commentators tried to view them as some sort of rehab program, the athletes ensured that label just didn’t stick. What the U.S. and Russian sled hockey teams were doing out there was not an "activity", and the U.S. and Canadian teams were basically at war.
With better scheduling, I think the disability community could really embrace the Paralympics, come 2016 in Rio.
Monday, March 17, 2014
Music For A St. Patrick's Day
Something smooth and light ...
Or, if you’re up for something stronger ...
Or, if you’re up for something stronger ...
Another Rant On Positivity
Michael Rothman, ABC Good Morning America - March 17, 2014
Oh dear, oh dear.
“Only true disability is in our minds”. Not this again!
During the Winter Paralympics, Amy Purdy was one of the handful of highlighted athletes, and one of I think only two how had ads made around them and played in heavy rotation. She seemed pretty cool to me, and never said anything clichéd or superficial about being a double leg amputee snowboarder. The “feel good” aspect of her story as she told it was mainly her love of snowboarding, which caused her to keep asking doctors during her hospital stay, when she could snowboard again. That was a very individual thing about Amy Purdy, and not some non-specific brand of positivity extrapolated to all disabled people.
Which is why I was so disappointed to see this platitude attributed to her. So, I read the article, and I don’t see anywhere in it where Purdy actually says that the only true disability is in our minds. Mostly she says positive but grounded things I can’t argue with, including recognizing the fact that on “Dancing With The Stars”, she will be the novice and will have to learn from her partner. In the Duracell ad embedded in the article, she says, ""When disease took my legs, I eventually realized I didn't need them to lead a full, empowering life.” That’s quite a different thing to say and a lot more meaningful than, “The only true disability is in our minds”.
Did she say it or not? Or, was it something a headline writer had rattling around in his or her brain and just threw out there?
Why do I care?
First of all, it is simply not true. When you are a double leg amputee, it is not true that the only disability is in your mind. As I have written before, having a defeatist or lazy mindset can certainly be an additional disability, and a positive attitude may be a prerequisite to success, but missing two legs is a disability in and of itself. It doesn’t have to be a terrible thing, but it is a thing, not a state of mind. As I expect Amy Purdy would agree.
Second, this kind of dime store spirituality is a pet peeve of mine. On the one hand, it’s a meaningless platitude … well-meant and probably harmless. On the other hand, it connects with a very definite ideology that some find therapeutic, but I think does harm in the long run. This is the idea that actual, physical, concrete circumstances can be overcome by the proper mental attitude. No income and no job? Resolve that you deserve your dream job, think positively about it every day, and it will happen. Have a serious physical impairment? If you don’t think like a disabled person, then nothing can stand in your way.
The real harm comes with the converse. Disabled people who aren’t successful have their own attitude to blame. They've given up. They're too angry. They obsess over their condition and what they have lost. They use their disability as a "crutch". How ever it's phrased, it is the disability version of victim blaming.
Maybe this is a twisted way of reading a nice idea. Maybe it’s never intended to be a back-handed scold. Trust me, when you are disabled and faced with multiple intractable barriers, especially external ones, while a successful disabled person says that success is all about attitude, the message comes through loud and clear.
Again, attitude is important. It is a factor, and can either empower you or create additional problems for you. But perhaps more than any other “disadvantage”, disability does insist on itself. You can’t regrow a limb through determination. Spinal cords are not regenerated through daily affirmation. Disability exacts a price. For many of us, the price is manageable. For some, the price changes from day to day, month to month. For others, the price is very high, and it takes positivity, and adaptation, and cooperation, and a more just society to cope.
If Amy Purdy really said “The only true disability is in our minds", I hope at some point we can know the context. Among elite athletes, everyone has roughly equivalent physical gifts … even disabled athletes. In athletics, mental attitude really can make the difference between victory and defeat ... between a medal and anonymity. But that’s why disability sports are tremendously fun and exciting, but of limited teaching value in terms of most of our everyday lives. Snowboarding on two prosthetic legs is pretty amazing, but it requires a very different set of skills and personal qualities than landing a good job when you wheel into your interview. It is tempting to make comparisons, but we should be careful about it.
In the end, whether Purdy said this or not, the sad thing is that she said so many other great, insightful things that would have made much better headlines. It seems like most journalists have an unerring instinct for latching onto the most comforting, optimistic, simplistic things disabled people say. The fact that it often happens to be bullshit doesn’t seem to matter.
Sunday, March 16, 2014
Winter Paralympics Results
And the top 3 countries are:
1. Russia
2. Germany
3. Canada
The United States came in 8th place.
This doesn’t quite convey the whole story, because Russia’s first place is by miles. They won 30 gold medals. The next highest, Germany, won only 9 golds, and on down from there. I don’t know much about the development of Paralympic sports, but the result does baffle me. Is it just because Russia could send more athletes tan anyone else, do the Russians devote more resources to Paralympic sports? It’s remarkable when you consider the fact that in 1980, when the Soviet Union hosted the Summer Olympics, they declined to host the Summer Paralympics as well. Was that a reflection of how Russians at that time viewed disabled people? Have disabled peoples’ status in Russian culture improved that much since?
And, for all our supposed leadership in disability matters, the US seems to have underperformed. Is this one of those instances where we just assume we’re ahead of the curve, only to find out that lots of other countries have quietly progressed further than us?
I will certainly be paying closer attention to the next Paralympics … the 2016 Summer Paralympics in Rio de Janeiro.
Disability Thinking Survey
A little less than a year ago, I set up a survey to get feedback on ideas for an expanded version of “Disability Thinking”. The site is still mainly just a blog, but I haven’t given up on expanding, so here is another survey. The main thing I want to find out is what people want to see in a multi-featured website by and for people with disabilities.
Please take a few minutes to complete the survey. I would really appreciate it!
Note: Make sure you scroll down and click the "Next" button after giving the first set of answers. Thank you!
Note: Make sure you scroll down and click the "Next" button after giving the first set of answers. Thank you!
Weekly Wrap-Up
Sunday, March 9, 2014
Monday, March 10, 2014
Tuesday, March 11, 2014
Wednesday, March 12, 2014
Thursday, March 13, 2014
Friday, March 14, 2014
Saturday, March 15, 2014
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