Disability Thinking: January 2015

10 Things I Wish Someone Told Me About Parenting a Child With Special Needs

Friday, January 30, 2015

Max & Hank (and Adam & Kristina)

Silhouette of parents and two small children

Liane Kupferberg Carter, The Mighty - January 10, 2015

In the almost two years since I started disability blogging, I have seen many excellent articles and blog posts, like the one above, offering advice to parents of disabled kids. Not surprisingly, there is a lot of overlap on these lists, since a lot of the best advice is really just common sense. Occasionally, I’ll see a suggestion I actually disagree with, but that’s fairly rare.

There is one bit of advice for “special needs parents” that I don’t think I have ever seen on a list like this:

Get to know an adult with your child’s disability.

I included this in a collaborative blog post I did last year with Kerith Stull, of the Brielle & Me blog, but other than that, I don’t think I have ever seen the idea or anything like it in any other advice article targeted to parents of disabled kids. Not that I think I’m so brilliant, but this surprises me. As I always try to say when I write about parenting, I am not a parent myself, but it seems to me like meeting an adult or two with a disability similar to your child’s would be a pretty obvious item for any parent’s to-do list. The relative absence of this idea on “special needs parenting” blogs suggests two possible explanations:

1. It’s just not occurring to parents, or

2. Parents do give this a try and for some reason don’t find it helpful or satisfying.

It’s the second possibility that has me most curious. I would be interested in hearing from parents of disabled kids who have come to know some adults with disabilities. Do you find that connection helpful, or not? If not, is there anything we, as disabled adults, could do differently to be more supportive of you and your child? You can post replies in the comments below.

Now that I think about it, I have seen this idea indirectly suggested on the TV show Parenthood. In one of the earlier seasons, Adam and Kristina Braverman, (whose son Max has Aperger Syndrome), meet a man living successfully with Asperger's. Later in the series, Max gets to know a photographer who discovers, through Max, that he may have Asperger's too. In both cases, Max's parents gain some perspective on Max's disability, and added hope for his future. It's well worth watching.

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Disability Blogging Link-Up

The word "blog" prominent in a multicolored word cloud

It's Friday. Time for another Disability Blogging Link-Up!

Use the thingamajig below to post a favorite blog post or article on something related to disability. You can post something you've written, or someone else's work you really like.

Here's how it works. In the "Your name" blank, type the name of the person or website, and the title of the article or post. For instance:

Disability Thinking: Best Disability Post Ever!

In the "Your URL" blank, paste the whole website address of the article you are posting.

Then click the "Enter" button. That's it!

Note: If your post doesn't appear immediately, try "refreshing" the page a few times. Sometimes it takes a little while to show up. Also, feel free to post more than one item. Finally, you might want to add a comment at the bottom of this post, to identify yourself or add an explanation or comment about the items you are posting.

Have fun posting and reading! This Link-Up will close at Midnight Eastern on Sunday.

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Disabled wiener dog gets a 3D-printed wheelchair

Thursday, January 29, 2015

Dog Video Of The Day

Bonnie Burton, C-Net - January 28, 2015

I’m not feeling very chatty today, so I figured I’d share this story and embed one of the videos.

Notice that the reporter doesn’t call the dog “wheelchair bound”, usually a go-to journalistic term for human beings who use wheelchairs.

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Wednesday, January 28, 2015

Language, Privilege, And Stuff ...

Sometimes it’s helpful when people write ridiculous things, because in response, other people write non-ridiculous things that actually move the discussion along:

Jonathan Chait says he's worried about “Political Correctness” and “Social Justice Warriors”.

On the bright side:

Alex Pareene at Gawker responds.

John Hodgman responds.

Andrea Shettle doesn’t directly respond, but her comments about ableist language do seem to relate in several ways.

In addition to liking the three responses above, here’s what I think:

The ultimate “privilege” is to be a “regular person”.

“Regular people” who are mean make jokes about other kinds of people, and use whatever words they want to describe them.

“Regular people” who are nice analyze and explain other kinds of people to other regular people … and to those other kinds of people, too.

“Regular people” become uncomfortable when the concept of “regular” seems to be dissolving, and when other groups express opinions of their own … especially when those opinions differ from those of “regular people”.

“Regular people” should probably just relax a bit. It’s very unlikely that they will truly lose much status in the end … apart from maybe the right to have all their jokes duly laughed at, and their ideas automatically taken seriously, always.

All this is quite applicable in the disability sphere. In one sense, disabled people are not “regular people” ... we are one of those “other kinds of people."

At the same time, there are a lot of disabled people who are, in every other respect, “regular people”. I’m pretty close to being “regular people” myself. One way you can tell is that I have a blog where I pontificate about my sensible, serious opinions every day.

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Plain Jane: The SHOCKUMENTARY
YouTube profile of AHS: Freak Show actor Matt Frasier
YouTube profile of AHS: Freak Show actor Jyoti Amge

Tuesday, January 27, 2015

Disability.TV Ep. 19 - American Horror Story: Freak Show

"Don’t you get it? This place is as good as it gets for folks like us … but we take care of each other.”

“The way they look at us. The way they treat us. It ain’t right!”

“That’s showbiz."

American Horror Story: Freak Show … Is it a degrading abomination or an exhilarating walk on the wilder side of disability? I’ll explore this and other related questions with disabled activist, artist, and podcaster Jane Hash.

Use the links below to subscribe, comment, and read more about topics mentioned in this episode.

American Horror Story

Wikipedia: Freak Shows

Hash It Out With Jane

AV Club Season 4 Reviews by Erik Adams and Emily Stephens

Vox.com Season 4 Wrap-Up by Todd VanDerWerff

Hear More and Subscribe:

Podcast Page

iTunes

Stitcher

If you are so inclined, please leave an iTunes or Stitcher review. Positive reviews help more people discover the Disability.TV Podcast.

Comment:

Disability Thinking Blog

Twitter: @AndrewPulrang

apulrang@icloud.com

Podcast Survey

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Monday, January 26, 2015

More Thoughts On Education

3-D stick figure of person with graduation cap, seated on top of a stack of books

Following up on Saturday’s post on Education:

As I think back over all of the interactions I have had with disabled students and their families, I realize that most of the complaints and traumas the students, themselves talked about were about how they were treated by people … teachers, counselors, and fellow students … and relatively little about the curriculum itself being too hard. I mean, I’m sure that most of them also experienced a lot of frustration over the content, too, but most of even those complaints were about botched or denied accommodations, not about the material being “above” their cognitive ability.

Quite a few parents, and a lot of teachers, worried about whether it was cruel to hold more disabled students to “higher standards”. There was this very prevalent idea that it was somehow self-evident that some unspecified percentage of Special Education students were simply incapable of getting a regular diploma … and the percentage was aways inching upward.

I almost never heard students, themselves, complain about higher standards. One might argue that perhaps they didn’t have the vocabulary or conceptual understanding to make complaints that specific, but in my experience they had little trouble being specific about their other complaints.

Also, I can’t think of a single disabled student who ended up worse off or more unhappy because they took more tests or were more fully integrated in more demanding classes. But I can think of scores of kids and young adults I met who were definitely worse off than they needed to be, in part because teachers, counselors, and families thought school should be “easier” for them.

This is all anecdotal of course, based only on my personal memories which may also be faulty. Still the pattern is striking.

So although I’m still ambivalent about stuff like “high stakes” testing, and I don't necessarily trust schools to make good decisions about accommodations, I generally feel an instinct to stick up for more rigor, not less, in education of kids with disabilities.

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Sunday, January 25, 2015

Weekly Wrap-Up

Illustration of a weekly calendar with a red pin

Monday, January 19, 2015

Newbie FAQs: MLK Day

Tuesday, January 20, 2015

Wednesday, January 21, 2015

#SOTU4PWD 2015

Thursday, January 22, 2015

"Cripface"

Friday, January 23, 2015

Saturday, January 24, 2015

Caught Between Sides

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Disability Advocates Sharply Critical Of Plan To Ease Testing

Saturday, January 24, 2015

Caught Between Sides

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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Friday, January 23, 2015

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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Disability Blogging Link-Up

I have been toying with the idea of starting a weekly “link-up” for some time now … and now is the time!

A link-up is a special type of blog post that allows visitors to post links to any blog post they like, from any blog or website. To see a working example, visit this link-up at Love That Max.

Like Ellen at Love That Max, I plan on making this a weekly “weekend” link-up. I’ll post a new one every Friday, and leave it open for posts until late Sunday. As per the title, “Disability Blogging Link-Up”, I invite everyone to post their favorite recent blog posts about disability, broadly defined. There is no practical limit on how many items you can post, but I’ll ask everyone to limit themselves to 3 posts per weekend. Also, posting your own work is definitely encouraged!

I hope these link-ups will become another reliable place to see all the best stuff on disability each week.

Where it says "Your name" type the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Where it says "Your URL" put the direct link to the post. Click “Enter”, and that’s it.

You might also want to add a Comment below, (using the regular comment link) if you have any explanatory notes about the items you post.

Of course, the best part is checking out the links to what other disability bloggers have posted. The more people contribute, the more there will be for us to read each weekend.

Have fun!

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Why The Theory of Everything Is a Disappointing Depiction of Disability

Thursday, January 22, 2015

“Cripface"

Scott Jordan Harris, Slate.com - January 20, 2014

I look for three things in TV and film depictions of disability:

1. Authenticity about the details of the disability.
2. Fully developed disabled characters.
3. Insight into real-life disability issues.

Number 3 is optional. Authenticity and fully developed disabled characters are quite often enough for a satisfying disability depiction. Tackling disability issues is a nice extra, when done naturally and not in a “You see Timmy …” moment.

To me, the issue of “Cripface” ... non-disabled actors playing disabled characters ... isn’t whether it is inherently wrong or offensive, so much as whether or not it meets these criteria, resulting in good depictions of disability.

It’s probably important to note here that “good” and "satisfying" often means different things to disabled and non-disabled viewers. The typical moviegoer or TV-watcher seems to have different criteria for disability stories and disabled characters:

1. They want to feel happy when the thing is over.
2. They like feeling lots of feels … sadness, pity, admiration, inspiration.
3. They want to think they have learned about certain disabled people, but they aren’t so interested in learning about disability itself or disability-based injustice.
4. They love “stunt” acting, where an actor convincingly portrays a character that is completely unlike themselves.

I think number 4 is where the Oscar-bait thing comes in. When a non-disabled actor seems to do a good job of playing disabled, most viewers latch onto it as a clear example of raw acting ability. Since a lot of acting talent is subtle and hard for non-critics to identify, there may even be some excitement about being able to easily pinpoint when an actor has done something really difficult … like an able-bodied actor playing a well-known disabled person. Eddie Redmayne looks a lot like Stephen Hawking, so right away, there's an assumed element of "Wow!"

One reason I like this Slate review is that it does give some specific evidence that maybe Eddie Redmayne and the writers didn’t, in fact, do such a great job of portraying Stephen Hawking. I haven't seen 'The Theory Of Everything", so I can't judge for myself. What Mr. Harris describes, however, is not encouraging.

As I indicated, I think it can be done well. I still greatly admire “My Left Foot”, in which the non-disabled actor Daniel Day-Lewis played Christy Brown, an Irish poet who had Cerebral Palsy. I think one reason I still like that film is that the writers made sure to give us a pretty full picture of the man, and avoided most of the usual disability cliches, like dreaming of being “normal” and being super-sweet, that make so many disability depictions seem fake and predictable. It also introduced and fully explored some truths about disability that aren't as familiar to mainstream audiences ... such as the complex nature of disability sexuality, and the problematic ways that "do gooders" often relate to disabled people. Finally, I got stuff out of "My Left Foot", as a disabled person, that I'll bet most viewers missed. It sounds to me like there's nothing challenging or original in "The Theory Of Everything" ... nothing that will rock any disabled viewer's world.

It does seem like “My Left Foot” is the exception that proves the rule. “Cripface” is bad because it’s inherently offensive, but what’s even worse is that most of the time it produces bad art. Put another way, non-disabled actors are apt to make mistakes, and allow mistakes to be made, that disabled actors just wouldn't.

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Wednesday, January 21, 2015

#SOTU4PWD 2015

Alice Wong of the Disability Visibility Project put up a terrific Storify collection of Tweets from last night’s State Of The Union Address, under the #SOTU4PWD hashtag.

Overall, I was very impressed with the Address. A lot of the policy initiatives President Obama talked about are right up my alley, politically. And truly, many of them would, if enacted, be especially helpful to disabled Americans.

That said, I was surprised that people with disabilities got only a very brief, basically positive, but rather sloppy mention at the end. Look, I’m not suggesting that it’s an insult of some kind that the President didn’t talk about long term care, the disability employment gap, or our apparently never-ending quest for better accessibility. Those of us who are disabled and who were motivated last night to participate in the #SOTU4PWD Twitter hashtag have an understandably skewed perspective on disability issues. Actually, it’s probably the right perspective, but most of our fellow citizens would find more detailed discussion of our issues incomprehensible.

Still, I am surprised that the President didn’t at least mention the ABLE Act, which he signed into law in December. While I have reservations about how the bill turned out in the end, it was a step in the right direction on an issue unique to disabled people, and the bill passed with rare bipartisan support. Since the President chose to make what sounded like a final, kind of wistful pitch for his original idea … more respect and cooperation in American politics … it seems strange that he didn’t cite it as an example.

A few folks on Twitter last night also mentioned how incomplete the President’s mention was at the end … “Americans with mental illness or physical disability,” an odd choice of words that suggests awareness of the need to be inclusive, but insufficient awareness to actually be fully inclusive.

Are we really surprised though? This is exactly the kind of incompleteness that characterizes ableism, especially in liberal, progressive, social justice circles. You have good intent, not enough knowledge, and yet, crucially, not enough motivation to ask anyone how to actually follow through in the right way. As I have said before, I don’t expect people to know this stuff … I just wish they’d take the time to ask.

I think the best thing about the evening was seeing so many disabled Twitterers making smart, pertinent connections to disability issue throughout the speech. This kind of engagement is how we will get to a day in some future January when a President will mention real disability issues, and understand not only how they are important to us, but to the rest of the country, too.

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Tuesday, January 20, 2015

What I Would Like President Obama To Address In His State Of The Union Address

I will resist the temptation to watch the end of the Canadiens vs. Predators game, do my civic duty, and watch the State Of The Union Address. Actually, I’m into this kind of thing, so it’s not really a hardship.

It’s pretty rare for presidents to talk about disability issues in these addresses, but not unheard of. Here is an admittedly idealistic list of things I would like the President to mention tonight … though I won’t be too surprised or disappointed if he doesn’t:

- If he talks about citizens killed by police … a hot-button issue he may well ignore altogether … I hope he mentions the risks to disabled people like Ethan Saylor, too.

- I really do hope he voices strong support for fully funding Social Security Disability, with a strong repudiation of panicky myths about SSDI being “out of control”.

- He should shame the Senate for still failing to ratify the UN Convention on the Rights of Persons with Disabilities.

- If he cites the ABLE Act as a rare example of bipartisan cooperation, it would be great if he would refer to it as a starting point, not a problem completely solved.

- It is always a good year to broach the subject of long term care, and double down on support for programs that enable the elderly and the disabled to live independently in their own homes.

- It would be an interesting moment right now … while he addresses income inequality and middle class stagnation ... to advocate a final end to paying sub-minimum wage to workers with disabilities.

I will be following the #SOTU4PWD hashtag during the speech. If there’s anything interesting in it, I will do a blog post about it tomorrow.

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NDY Is Not Working in Coalition with the Family Research Council – And Here’s Why

An Important Clarification On Assisted Suicide

Diane Coleman, Not Dead Yet - January 19, 2015

This statement from the disability rights organization Not Dead Yet was prompted by a specific, “inside baseball” sort of event, but the statement turns out to be a very effective explanation of why many disabled people and disability organizations oppose legalization of assisted suicide and euthanasia. Plus, it underscores crucial differences between disability opposition to these causes and the “right to life” movement.

The disability rights argument against assisted suicide and euthanasia is almost entirely different than the traditional moral / religious arguments against them, and organizations like Not Dead Yet should not be conflated with conservative and religious organizations like the Family Research Council and Right To Life. There is definitely some overlap in regard to policy, but very little in ideology.

The fact that I oppose assisted suicide and euthanasia doesn’t indicate that I’m a right-winger or religious fundamentalist. Far, far from it. By the same token, agreement on this particular policy issue doesn’t mean that religious right groups necessarily understand or really care about the disability rights perspective.

You can see similar clarifications being mapped out right now over Senate Bill 334, which would ban abortion based on disability or gender. I admit, it’s messy. But the distinctions make sense and they are more or less consistent.

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Monday, January 19, 2015

Newbie FAQs: MLK Day

FAQs spelled out in 3-D blue letters with a computer mouse in front

What does disability have to do with the Martin Luther King Holiday?

It’s risky to draw out too many similarities between disability and race. It’s really easy to make these kinds of analogies glib and appropriative. It’s also tempting, and not in a good way, to try and make everything about the Civil Rights Movement match up perfectly with the Disability Rights Movement. The whole thing can get pretty ridiculous and insulting very quickly.

The reason we may think of making the connection is pretty valid though. The everyday experience of both race and disability include social stigma and practical discrimination. In fact, there are reasonable arguments to be made that both race and disability are actually social constructs … that they are in fact all about prejudice, and very little about anything else. I think it’s also worth acknowledging that historically, both the Civil Rights and Disability Rights movements focused on laws and policies to bring about change. And both, to different extents, have seen the limits on how much you can change everyday life by changing laws. You have to do it, but it’s not enough by itself.

Finally, I would say that while the experience of disability is very different in many ways from the experience of race, it is nevertheless true that for many of us with disabilities, disability feels more like race, or other social identities, than it feels like illness or disease. That is still a surprise to some folks when they hear it, and it tends to be a key conceptual breakthrough for disabled people, too, when they have that realization.

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Sunday, January 18, 2015

Weekly Wrap-Up

Monday, January 12, 2015

Disability.TV - Ep. 18 - Top 5

Tuesday, January 13, 2015

Newbie FAQs: Accessibility

Wednesday, January 14, 2015

Thursday, January 15, 2015

Don’t Look Away

Friday, January 16, 2015

For What It’s Worth ...

Saturday, January 10, 2015

Disabled TV Character Face-Off: Fifth Round

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Saturday, January 17, 2015

Disabled TV Character Face-Off: Fifth Round

Tyrion Lannister beat Geordi LaForge in the fourth round.

Here is the updated bracket:

The fifth round features Max Braverman vs. Walter “Flynn” White, Jr. Which character do you like best?

Max Braverman

Parenthood

Actor: Max Burkholder

Disability: Asperger Syndrome.

Role on the show: Secondary character in ensemble cast.

Walter “Flynn” White, Jr.

Breaking Bad

Actor: RJ Mitte

Disability: Cerebral Palsy.

Role on the show: Secondary character in ensemble cast.

Create your free online surveys with SurveyMonkey , the world's leading questionnaire tool.

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Friday, January 16, 2015

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

Thursday, January 15, 2015

Don't Look Away

American Horror Story: Freak Show poster

In a little over a week, I will post an episode of the Disability.TV Podcast in which I will discuss American Horror Story: Freak Show with Jane Hash, of the Hash It Out With Jane Podcast.

Sneak preview:

If you are disabled and you care about disability issues, social stigma, ableism and the like, you should at the very least watch the first episode, “Monsters Among Us”. I’m not going to say whether the show is good or bad, offensive or heroic, sensational or thoughtful. Just don’t ignore it because it seems on the surface like it must be nasty and exploitative, by definition. There is more there than meets the eye, and more there, too, than the writers probably know.

Wednesday, January 14, 2015

Disability Fight: Followup

picture of a stack of newspapers with NEWS in big bold headline at the top

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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