What's The Deal With Autism Speaks?

YEEES

Reblog by Sunshine, been keeping me up for days - November 14, 2013

This is the best collection of reputable links that explain why many people are upset with the well-known autism charity, Autism Speaks … that’s the organization whose logo is a blue puzzle piece. I particularly recommend the letter by John Elder Robison, in which he resigns from the Board of Directors of Autism Speaks. Criticism of the organization is particularly intense right now, because Autism Speaks is hosting a conference and Washington, DC lobbying effort this week.

I am not autistic. I don’t have children or other relatives who are autistic (that I know of). So why am I interested in this?

I think it’s important for as many people as possible to know that the nation’s most recognized autism charity has a very particular point of view that a great many people don’t agree with. It isn’t uncontroversial. You can support it’s goals and tactics if you agree with them, but don’t assume that because it’s about autism, and they have charity walks and things, that it must be good.

I think it’s important to hold all disability charities and organizations to a rigorous standard of conduct, and ask whether its goals and tactics are close enough to your views to support it.

I think that the debates between different understandings of autism provide important insight into the different ways all disabilities are experienced and understood.

Plenty of people without autism or a direct connection to autistic people support Autism Speaks. So, I don’t think it’s any more presumptuous for me to oppose Autism Speaks, or support an alternative autism organization I like better.

There IS at least one autism organization that I believe represents a better alternative to Autism Speaks … The Autistic Self Advocacy Network.

The resignation letter is beautifully written. It is also strong without being rancorous. Despite my lack of personal connection to autism, the letter moved me, particularly as a person with disabilities.

Survey

YOUR Opinions on Employment and Disability!

Andrea Shettle's Tumblr blog - November 14, 2013

This is a "signal boost" for a potentially valuable survey on employment and people with disabilities. I did it, and I encourage my readers to do so as well, especially those who have disabilities.

Survey on Employment and Disability.

Nothing To Say Today!

I find myself at a loss for a story to tell this week. For some reason my childhood and youth feel very dull to me at the moment. I’m sure next week I’ll have something worth reading.

Photo Of The Day

From the Livingwithdisability Tumblr blog.

Advice For The Non-Disabled

Sooner or later, anyone who writes or speaks on disability issues is going to try making a numbered list of "commandments" or "advice" on how non-disabled people should treat people with disabilities. I’ll give it a go:

1. When you meet someone with a disability who you're going to need to get to know ... like a coworker, likely frequent customer, or close neighbor ... make it your initial goal to find out the main interesting thing about the person, other than their disability. This is the thing ... whatever it is for each person ... that you normally would forever after associate with that person if it wasn't for their disability. Once you find out what that thing, is, you'll probably find that that is what you associate the person with rather than their disability.

2. When you reach that point, good on you! But please, don't tell your new friend, "I don't even think of your disability anymore!" When you have a disability, it's always an important part of you, even if it isn't the only interesting thing about you. It's not helpful when people forget about it, and it's not a compliment either ... like ignoring an enormous zit. A disability isn't an ugly blemish you need to "get past", it's part of the person you are getting to know. The goal isn't to "forget" it, but to put it into perspective. Still don't get it? Okay, would it be cool for a white person to say to an African-American person they've become friends with, "I just don't think of you as Black anymore!"? I know some people really would, But I hope you wouldn't. It's the same with disability.

3. People with disabilities are incredibly diverse. We don't all have agreed upon positions on everything disability-related. For convenience, I like to divide the disability community into Jocks and Nerds ... or sunny optimists and tortured, intellectual pessimists. There are activists and conciliators. There are people who really hope for a medical cure for their condition, and there are those who mainly strive for better practical tools and social justice. There are people born with their disabilities and those who came into them later in life. There are people with no income other than SSI, and there are rich disabled people ... and their concerns can often be quite different. There are disabled people who look conventionally attractive, and there are those who are beautiful in ways that take imagination and an open mind. There are disabled people with the resources and tools to be highly functional, and there are those who struggle every day just to survive. This isn't an instruction or piece of advice, it's just something to know and not forget.

4. Many of us disabled people try to project a "can-do" image of ourselves and our community. There are good strategic reasons to do this, and it's not false, but it usually isn't the whole story. The one negative thing you need to remember about having a disability is that it is exhausting. The most commonly used explanation for this is the “Spoon Theory”, but I’ve got another analogy I think might be easier to understand. Think about how tiring air travel is. It’s physically wearing and … this is key … mentally exhausting. Well, that’s what a lot of our everyday errands around town are like. The air travel analogy is even more apt when considering disabled people who don’t drive, who rely on buses, taxis, or rides from friends and family. Any of these at any time can turn out to be late, or not accessible. Destinations, too, often turn out to be inaccessible, even when we’ve called ahead and been told that they are accessible. And every late bus, every inaccessible place, every wasted trip is twice as hard and tiring for us as it is for the average non-disabled person. Life with a disability is extra tiring, even when everything goes perfectly. When things fall apart, it can be really, really hard for us to hold ourselves together.

5. Exhaustion is the number one reason why we care so much about accessibility and adaptation throughout the community, and why we sometimes "lose it" when things don't work the way they're supposed to. The key thing to understand here is that accessibility is pretty much an either-or proposition. There aren’t many gray areas. A little step, or “just a few” steps is just as much of a barrier to a wheelchair, or someone unsteady on their feet, as 12 flights of steps. A bathroom stall that’s 2 inches too narrow isn’t “almost” good enough. 2 inches too narrow is just too narrow … you can’t get through. That’s why we sometimes seem overly nit-picky and unwilling to compromise. When it comes to accessible design, there’s really not much point in splitting the difference, and we kind of have to insist on things being designed or adapted in a certain way, otherwise there’s no point in even trying.

The bottom line to all of this is that when you are dealing with someone who has a disability, the best gift you can give is patience. Patience with our way of doing things, and patience with our need to vent once in awhile. It’s a small thing you can do that really can make our lives a lot more bearable.

Photo Of The Day

From the Disability Curious Tumblr blog.

Advocacy Updates

Action Alert: Call-in Day to Support Disability Treaty

Andrea Shettle’s Tumblr - November 12, 2013

More calls needed today for ratification of the UN Convention on the Rights of Persons with Disabilities, (CRPD). Call:

Senator Corker at 202-224-3344

Senator Menendez at 202-224-4744

For complete information on the Disability Treaty, updates, and advocacy tips, visit http://www.disabilitytreaty.org.

As it says in this update, “This is a marathon - not a sprint.”

"I woke up to five hundred more notes on this”

Crazy Crip Girl - November 12, 2013

A few weeks ago I posted about someone I’ve been following on Tumblr, who left her supermarket job because of her employer’s mishandling and ultimate denial of simple accommodations to deal with an accessibility problem they created. There’s good news to report:

"I’ve since found a new job. I’m currently in my training week. Their registers aren’t accessible, but they allow me to transfer to swivel stool when I’m at the register so it works out very well. I also get discounts, free food (no seriously), and paid lunch breaks.”

Getting a better job so soon isn’t precisely an example of successful advocacy, but it’s really a spectacular example of the fact that proper accessibility and accommodation are often truly a matter of choices, priorities, and attitudes. These two supermarkets probably deal with the same underlying physical conditions, but seemingly have opposite approaches to them. One is all about avoidance and narrow-minded thinking. The other is about common sense and flexibility. It would be great if some publicity could come out of this so the public could see how accessibility and accommodation can and should be done.

Talk About It

You should tell your kids that they’re autistic

Chavistory’s Notebook - November 1, 2013

This is the most clear and concise discussion of something I've felt very strongly about for a long time ... when and how to discuss kids' disabilities with them. The writer is talking about autism, but I think it applies equally well for just about any kind of physical or mental disabilities. Teachers should read this, too.

The ideas here help explain why I felt so uncomfortable with the episode of "Parenthood" where Max's parents suffer over Max finding out he's got Asberger's Syndrome. Spoiler: they are way, way more torn up about it than Max is.

Disability News

VA’s Shinseki has his critics as he tries to remake agency, cut disability claims backlog

Steve Vogel, Washington Post - November 10, 2013

This is a surprisingly sympathetic profile of Gen. Eric Shinseki, Secretary of the Department of Veterans Affairs. Maybe it’s a puff piece, but even with that possibility in mind, this article left me admiring Gen. Shinseki, and optimistic that the VA’s well-known problems might actually be on the way to being fixed. If nothing else, it sounds like Shinseki has good policy instincts that are firmly on the side of helping veterans, rather than guarding the bureaucracy. The irony is that if Shinseki was more of a gate-keeper, he’d probably be less publicly criticized.

Court Says New York Neglected Disabled in Emergencies

Marc Santora and Benjamin Weiser, New York Times - November 7, 2013

Ruling On NYC Disaster Plans For Disabled May Have Far Reach

Robert Lewis, NPR - November 9, 2013

I can easily imagine the average non-disabled reader wondering how in hell any city is supposed to handle disabled people in a natural disaster. The thing is, it’s probably going to end up being a few fairly simple steps that just get forgotten … like mobilizing wheelchair-accessible buses. It’s amazing how often otherwise intelligent people forget to think of basic transportation for people with disabilities who can’t ride in any old vehicle and don't own their own adapted vans. They have no concept of how limiting it is to a person’s mobility, and to their ability to take responsibility for their own safety. As for not being able to leave a building because of out-of-order elevators, I’m not sure what the fix for that is. Hopefully, with this court ruling and a new city administration coming in, disability advocates and city officials will actually work together to come up with practical solutions. Just repeating, "It's too hard, it can't be done" won't accomplish anything.

Photo Of The Day

From the Disability Curious Tumblr blog.

Disability Jocks and Nerds

I’m posting this video of John Hodgman speaking at the 2009 Television and Radio Correspondent’s Dinner for two reasons.

First, it’s funny and surprisingly touching, especially if you still have some affection left for President Obama. Second, it’s the the most clear and insightful discussion I’ve ever seen of “Jocks” and “Nerds”. And that’s important because I am coming to think that some of the divisions within the disability community parallel the Jock / Nerd divide.

While there are dozens of categories and subcategories within the disability community, I think we can see that there are two rough but recognizable approaches to disability as a topic and an experience … approaches that could be described as Jock and Nerd.

Disability “Jocks” are generally optimistic, gregarious, and practical. They mostly project a “can-do” attitude. Even their approach to disability prejudice and injustice is positive; a little education, a few policy changes, some more barrier removal and everything will be fine!

Then there are the Nerds, who are more introspective, a bit dour, less interested in being “just like everyone else”, and more aware of being a distinct subculture. Disability “Nerds” don’t just embrace the “social model” of disability, they disassemble it, reassemble it, and examine it from every angle. They dig into the experience of disability on every level. Like the Jocks, the Nerds experience injustice and want to correct it, but they tend to view ableism as deeply rooted and often intentional, not just a series of misunderstandings and policy tweaks.

I think this can help explain at least some of the “disabled on disabled” conflict we see in the broader disability community. Disability Nerds are uncomfortable with the seemingly relentless positivity of the Disability Jocks. The Disability Jocks get sick of the Disability Nerds’ obsession with terminology and harping on the negative all the time. Nerds think Jocks are too concerned with “acting normal”. Jocks think Nerds are too caught up in abstract theories of identity and justice.

I could keep going with this, examining how social class, income stability, and disability from birth vs. disabled later in life factor in, but I’ll stop for now and ask, is this idea helpful? Am I onto something? Also, are you a Disability Jock or a Disability Nerd?

Weekend Musical Break

The Stone Roses, “Waterfall”.

Thinking About Winter

Facing Five Miserable Months of Winter as a Wheeler

Tiffiny Carlson, New Mobility - November 6, 2013

I’m not a “wheeler”, but winter here in Northern New York isn’t easy for me. It’s not easy for anyone, but there are a few specific hazards that loom extra large in my life between early December and late March.

- I can’t shovel snow. This is less of a problem since I moved to a rented apartment building five years ago, but at least four or five times per winter I’m one of the last people in the building to try walking down the long ramp to the parking lot after a snowstorm, and can’t use my car until my friend Andy can make it over to dig it out.

- I have become, if anything, more afraid of ice underfoot than I used to be as a kid and young adult. “Wheelers” have their own difficulties with winter navigation, but there are many times I’d rather be in a wheelchair than trying to make my way over unfamiliar terrain on my unsteady pins. You get to know the various colors, textures, and light-reflecting effects of the different kinds of snow and ice that coat the ground. You also, hopefully, learn how to fall down properly.

- The most humiliating problem I run into is my car door freezing shut. Why humiliating? Because usually, it’s frozen just enough to prevent me from opening it, but not enough to make it at all difficult for anyone with anything like normal arm strength and finger dexterity. Rationally, I know it’s nothing to be ashamed of, but I feel silly anyway when after 15 minutes of my futile tugging, a kind passerby opens the door with a little pull and a tiny *clink* of breaking ice. A sturdy kitchen spoon sometimes helps me pry the door open, but then I have to remember to carry a stupid spoon out with me if I think the door’s going to be stuck again.

- I could also buy an automatic car starter, so the car would heat up before I got to it, but that’s one of those helpful, adaptive steps I’ve been unwilling to take since I bought my current car. Sure, it’s kind of expensive, but that’s not why I haven’t done it. Some might say it’s toughness, or determination to do things unaided. Or, maybe it’s bull-headedness … or stupidity.

Really, though, the winter hardships I face are trivial compared to the people I know who have physical disabilities and don’t drive. America is a car-centric culture, sidewalks are an afterthought, pedestrians are second-class citizens, and these facts are never more dire than during winter in a northern climate, in anything smaller than a small city.

Streets are always plowed and sanded. It’s one of a handful of things little towns and villages are really good at, and practically the only thing small town taxpayers don’t mind paying for. But, in my home town anyway, sidewalks are left to patchwork "voluntary compliance”. There’s an ordinance requiring property owners to clear their bits of adjacent sidewalk, but there’s little enforcement and no coordination. The idea of having city employees clear sidewalks is considered an extravagance, and … I kid you not … a symbol of the deterioration of civic virtue, because all the good citizens should be keeping the sidewalks clear voluntarily, out of a sense of neighborly duty!

So, wheelchair users, blind people, people who use canes, crutches and walkers, and anyone who can’t drive never know from one day to the next if they can get from point A to B, whether the route to work that was clear yesterday will be icy or totally blocked by snow … either fallen snow, or snow pushed out of the road and onto the sidewalks. Meanwhile, everyone else click their tongues and shake their heads at the irresponsibility of property owners, and complain loudly when they see a wheelchair user forced to make their way in the street. But just plowing all the sidewalks is impractical.

Yeah, that’s a sore point around here, especially for disabled people.

I’m with Tiffiny Carlson, though. I’ll probably never move to a milder climate. I’d miss “real” winter. After all, there is no better justification for sheer, lazy, stay-at-home-ness than a good snowstorm.

==========

PS: I got the Ned Stark "Winter Is Coming" picture from this wonderful short Tumblr post for "Spoonies" ... people with chronic pain / illness, another kind of disability that can make winter more difficult.