Best Explanation Of Autism

What Is Autism?

Nick Walker, Neurocosmopolitanism - March 1, 2014

Since I am neither autistic myself, nor educated on all of the various views and facts about autism, I call this the “Best” only in the sense that Walker’s piece is the explanation of autism that is the most consistent with my general sense of what autism might be, and which I believe helps to answer some of the lingering questions I have about autism … questions that I rarely see addressed by advocates of the “neurodiversity” movement. Above all, it goes a long way towards answering one question:

What do autistic people experience that is different from non-autistics?

Walker writes:

“ … the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.”

Of course, I can't say from experience whether this is correct. However, it is a direct, coherent, grounded answer to the question, and it sounds like a very plausible explanation for the various things that autistic people do that are different from what most non-autistic people do. Autistic “behavior” is a rational response to a significantly different sensory experience. That is far less sinister and mysterious-sounding thing how autism is described by even well-meaning autism “experts”. It also suggests that autism really is like other disabilities, which involve doing things differently in order to adapt to different physical or mental input or settings. When you are disabled, it is irrational and maladjusted to NOT do things differently. It seems like the same can be said of autism.

Do read the whole explanation. I have yet to see a better one.

Simpler Than It Sounds

For all its hyperbole and occasional descents into doctrinal nit-picking, Tumblr still has some of the deepest, most interesting disability discussions on the Internet. However, there still seems to be a lot of unnecessary anxiety and trolling around the word “Ableism” and its variants, like “Ableist”. Nobody appointed me King of Terminology, but I do think that this is one of those rare “issues” that really is less complicated than people make it out to be.

1. “Ableism” is simply a more efficient word for disability prejudice, no more, no less. The word is somewhat new, but the phenomenon it describes is not. As far as I know, it wasn’t invented on Tumblr, or in the Disability Studies Department of a major university. It is a perfectly simple and common-sense word that likens disability prejudice to racism or sexism, the types of prejudice experienced by people of various races or genders.

2. The most important thing about ableism is not that it hurts our feelings, it’s that ableism leads to harmful policies that affect disabled peoples’ ability to live fully and independently … even, in some cases, our ability to live, period. Ableism can certainly be annoying, insulting, or even degrading, but these feelings are only the tip of the iceberg. Ableism would still be a problem if we all had some ideal degree of “thick skin” and perfect rationality.

Coming Attractions

Just a reminder that we are a little over two weeks from the return of Game Of Thrones, a show with more disabled characters than any other show on television. That’s not the main reason to watch Game Of Thrones, but it is a definite bonus if you are interested in seeing characters with disabilities.

[slight spoilers ahead]

• Tyrion Lannister is a Little Person.
• His brother, Jaimie Lannister is an Arm Amputee.
• Bran Stark is a Paraplegic.
• Hodor is Cognitively Impaired, with limited speech.
• Both Sandor Clegane (“The Hound”) and Shireen Baratheon have severe facial disfigurements which do stigmatize them.
• Maester Aemon is blind.

I don’t think I’m forgetting anyone, but I wouldn’t be surprise if someone reminded me of others.

By the way, I know she’s not talking about disability issues, but I absolutely loved the bit in this trailer where Daenerys Targaryen and Ser Barristan Selmy have this exchange:

Ser Barristan: “Sometimes, it is better to answer injustice with mercy.”
Daenerys: “I will answer injustice with justice!”

I’m not sure why that struck me so powerfully ...

Best Disability Etiquette Advice

Thoughts on noticing disability experiences

Real Social Skills - March 18, 2014

Via The Lame Dame.

The title of this linked Tumblr piece really should be something like, “A More Useful Disability Etiquette”. The problem is that it came in the middle of a conversation about the social pressure on disabled people to keep things that bother us to ourselves … to “protect” non-disabled people we meet socially from having to know about the physical barriers and ableism we face every day. Someone had then said that he or she didn’t want to be shielded, but wanted to make real, respectful connections with disabled people, and how should they do that?

The list of suggestions from the Real Social Skills blogger is the answer to that question.

There is a complete disability etiquette seminar in there, and much better than the usual boilerplate, obvious stuff that usually passes for disability etiquette / awareness content. I wonder if anyone has ever done a comprehensive study of “disability awareness” content. I have felt for a long time that disability awareness guides, curricula, and exercises need to be overhauled, but have never figured out how or exactly why. This list seems to me like a great start, in part because it addresses what people really want to know … what really makes them anxious: How do I talk to a disabled person without putting my foot in my mouth?

I would only add one item the list:

Just as a surprising change of pace, if you want to connect with a disabled person, instead of asking about their disability, which can often be intrusive, ask them whether they experience barriers or discrimination. For most disabled people, the subject of our actual disability and how we become disabled is boring old news. What continues to engage us every day are the barriers and discrimination we face, and talking about them is kind of taboo on us, as noted above, because we don’t want to be seen as whiners. Inviting us to vent can be most welcomed, and at the same time will give you a glimpse into what life with a disability is like.

Be prepared to listen though, not argue. Don’t invite the conversation only so you can engage in some kind of “devils advocate” debate, or to expound your theory that accessibility is a waste of money, or that there are too many handicapped parking spaces. “Reasoned debate” is incredibly valuable on these topics, but there is a difference between discussions designed to hash out truths, and sharing to increase understanding and intimacy.

Addendum:

I just noticed that Real Social Skills posted my original Tumblr reply, which incorporates some of what I have said here. I suggest just going to the Real Social Skills blog and browsing all of the responses on this thread. They contain a lot more good suggestions from others.

Friday Favorites

Love That Max

Love That Max is the first "Special Needs Blog" focused on parents of kids with disabilities I really liked. During the week, the blogger, Ellen Seidman, generally does one post per day about her son Max, an 11 year old boy with Cerebral Palsy. Her posts are personal, funny, and refreshingly light. Even when she talks about difficult, painful, or weighty situations, she does so mostly without drama and extra layers of significance. She never sentimentalizes Max, which I like to think is an example to other parents. I can read pretty much anything Ellen writes without feeling weird as an adult with disabilities who used to be a disabled child ... something I can't say with a lot of other parent bloggers. Honestly though, the best thing about Love That Max is the "Weekend Blogger Link-Ups". Every weekend, guests can post links to any blog posts or web pages they want. This results in collections of disability-related blog posts, articles, videos, and the like. Most of them are parent-centered, but a good few are always on a broader array of disability topics. I post there pretty much every week, and some of my most interesting comments have been left by parents who read Love That Max. The Weekend Link-Ups make Love That Max a richer, more diverse blog, and a great place to visit if you have any interest in disability issues ... whether you are a parent or a person with a disability.

Transcending CP

I can’t deny the nostalgia appeal of this blog, which is by a young woman with Cerebral Palsy who has just started college away from home. Nostalgia isn’t always pleasant, and the blogger here has ups and downs. What I find particularly striking is reading about her reactions to situations that at first seem pretty simple and not so terrible to me, but then remembering how I would have felt about them when I was 20 or so. Not that she’s fragile. The flip side is that she occasionally goes through trials that would crush me even today, and while they clearly affect her, I can sense that in some regards, giving up is not only an option for her, it’s not even something that occurs to her. This is what I think non-disabled people praise as “bravery” or “perseverance”. I suppose technically it is, we disabled people don’t shrink from those praises just to be humble. We tend to think it’s inaccurate to call us “brave” when we literally did not perceive any alternative. “Stubbornness” and “denial” might be more accurate, and they aren’t always insults. These qualities can work for us in the long run, as I think they do for the Transcending CP blogger. In any case, it’s fun to follow her progress.

My Gimpy Life

If you have ever complained about the lack of visibly disabled people on television, but haven’t watched “My Gimpy Life”, what’s wrong with you? Okay, so it isn’t technically a TV show … it’s a web series. But, the 9 episodes so far of this comedy series created by and starring wheelchair using actress Teal Sherer do I think provide a sort of prototype or preliminary sketch for what truly satirical, edgy, risk-taking comedy show about disabled characters might look like. I emphasize the satire, edginess, and risk-taking only to differentiate from disabled characters in a more traditional, broad-appeal sitcom, like “The Michael J. Fox Show”. I have nothing against “safe” sitcoms, but since they are an endangered species, I don’t think they make good shovels for breaking new ground in disability-themed popular culture. It is way too tempting in a series that relies on the tried-and-true to depict disability according to old, moldy narratives. “My Gimpy Life” is a bit rough, but it demonstrates that there are hundreds of legitimate disability-based story and character ideas just waiting to be employed. My favorite aspect of the show is the friend / rival relationship between Teal the wheelchair user and “Teal Too”, the little person … both aspiring actresses who subtly struggle with the fact that with disabled character parts extremely rare in Hollywood as it is, two young, blonde, disabled women named Teal can’t avoid competing with each other. I also love Teal’s roommate, introduced in the Second Season. He isn’t disabled, and his comedy has nothing to do with disability, which proves a disability show doesn’t have to be 100% about disability. If you haven’t seen “My Gimpy Life”, just go watch it. If you have seen it already, go watch it again. It won’t take you long.

Photo Of The Day

From the Take Me As I Am Tumblr blog, via The Lame Dame.

Looking For Assistive Tech Reviews ...

Control Your iPhone With Your Face – Set Up Switch Control In 7.1 [iOS Tips]

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!

More safeguards needed to ensure rights for disabled, rules supreme court

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”.

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.

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

Why the Disabled Do Not Watch the Paralympics … Even former Paralympians turn the dial

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.