Throwback Thursday

Three years ago in Disability Thinking: A Legal Victory For Choice
August 4, 2013

I wonder how Jenny is doing now? I wonder if she’s still living with the couple who were supportive of her. I wonder if her parents have gotten used to Jenny’s new life, or if they’re still bitter and afraid that something terrible will happen to her. I wonder how many more people like Jenny have exercised greater autonomy thanks to Jenny’s advocacy and the court’s decision.

Two years ago in Disability Thinking: Binge Watch: Classic Ironside
August 4, 2014

One of these days I probably will shut up about Ironside. It’s still one of my favorite TV depictions of disability though, and I still think it’s under-appreciated inside disability culture. That’s understandable. It’s a very old show, at least 3 generations back from the current generation of TV shows. And it looks it. Pretty much everything about it, from the formulaic plots, visual style, and strained efforts to keep everything light and frothy, smack of the kind of TV everyone’s grandparents enjoyed. It also has a fatal flaw in today’s standards of progressive TV. Chief Ironside is a disabled character played by a non-disabled actor. Still, Ironside is remarkable for how it normalized a pretty significant disability, and made it work in a decidedly mainstream show that was extremely popular in its day. At the same time, it occasionally dug into the deeper issues of disability in ways that very few current TV shows or movies ever manage to do. For the umpteenth time, I recommend watching Light At The End Of The Journey. It shows how Ironside’s disability is both a minor visual detail and, on occasion, an absolutely meaningful plot point.

Talk To Your Disabled Kids About Politics

Once again, I am putting my Three Threats To Disabled People Today series on hold until after a convention, this time the Democratic Party Convention. While these threats are very much in the news, at least for the disability community, my thoughts are all on the election right now.

I am prompted today to address parents of kids with disabilities. I just read a Facebook post by J.W. Wiley, director of the Center for Diversity, Pluralism, and Inclusion at Plattsburgh State University, here in Plattsburgh, New York. He says:

“Parents, I highly recommend that you sit your kids down and introduce them to the political process by making sure they watch/listen to some of the political speeches, both Republican and Democratic.”

Click here to read his whole post.

This goes double for parents of kids with disabilities.

My parents happen to have been passionate about politics, so they didn’t have to make an effort to introduce me. I couldn’t help being exposed to politics from an early age. Most people aren’t naturally interested in politics, though, and most parents of disabled kids have a thousand other things to think about, so I worry that for that reason alone, they may let politics slide for too long with their disabled kids.

On top of all the understandable practical distractions, some parents may also think that their kids’ disabilities make politics inaccessible to them, that politics and political philosophy aren’t important, or will be incomprehensible to them. Peoples’ understanding and ways of processing information and ideas do vary, but I believe it’s extremely dangerous to assume that politics are irrelevant to kids with disabilities. If anything, they need all the time available to them to learn about the political process and what it means for them as disabled people … as people who will will one day be disabled adults for whom disability rights laws, the structure of disability support programs, and life and death issues like health care, employment, and law enforcement are absolutely critical.

While politics can be disheartening and corrupt, political activism can also be an enormous source of personal empowerment and community for disabled people. Activism isn't for everyone, but for many disabled people, activism is a path to pride, self-confidence, and the assertion of personal rights and agency. Parents on their own can only do so much to give these things to their disabled kids. We need other sources. Most of us need, if you will, second families, second communities to fully develop our potential. Politics and activism are viable, well-mapped pathways to those to full citizenship for kids, youth, and adults with disabilities.

Above all, politics and activism are avenues for service. They aren't therapy for disabled people, though involvement can certainly be therapeutic. They are necessary elements of a better future and better government in our society. "Nothing about us without us" isn't just about the benefit to disabled people themselves. Disability policy gets better for our country when disabled people make and influence disability policy. All those laws, policies, and practices that make you mad, that you wish were different? They can be different if your kids with disabilities grow up and make them better, alongside their brothers and sisters in the disability community.

So please, watch convention speeches and debates with your disabled children. Discuss politics and your views in their presence. Take them with you when you vote. And when they come of age, make sure they’re registered. Politics are more important for them, because of their disabilities, not less.

By the way: Check out #CripTheVote, just one of the many, many disability activist communities of all shapes, sizes, and flavors that you and your kids can use to start your conversations.

Throwback Thursday

One year ago in Disability Thinking: This Old (Accessible) House

Since posting this item last year, I went through binge-watching phases with a few more current home remodeling shows, including Property Brothers and various versions of House Hunters. As far as I know, none of these popular shows have done anything with accessibility. One thing I definitely took away from them, however, is just how drastically you can transform an existing house. It's expensive, but then people buying or renovating houses are already committing huge amounts of money for fairly trivial things like granite counter tops and enclosed porches. Making a house more accessible really isn't that big a deal. And it still amazes me that these renovation gurus don't suggest proactive accessibility more often, especially for families who expect to live in their new or renovated houses into retirement age.

Two years ago in Disability Thinking: Best Article For Parents

Just yesterday I read an even better article that directly addresses what I would call the gulf between parents of disabled children and adults with disabilities. The divide isn't always huge or contentious, but I think it's made worse by the fact that the two sides rarely address their differences directly. Parents, especially, seem to assume that being on their kids' side means their experiences are interchangeable with their kids. In reality, being a disabled kid and parenting one are two different experiences. I suspect that in a way, parenting a disabled child is like adopting a child of another ethnicity from your own. It's foolish to question the love and devotion, and children are still children. But it's just as foolish to pretend there aren't two different cultures in the mix. Anyway, here is that article, by Tonia of the Tonia Says blog.

Growth Attenuation

Here is the article that started it all:

Should Parents of Children With Severe Disabilities Be Allowed to Stop Their Growth?
Genevieve Field, New York Times Magazine - March 22, 2016

Here are two great responses to it, in tweet form:

No, @NYTmag, #AbleistViolence is NOT ok!
Alice Wong, Storify - March 23, 2016

Language, Framing, and Perspective in Reporting on Disability
Kayla Whaley, Storify - March 23, 2016

This New York Times Magazine article has occupied my thoughts for most of the last few days. It purports to examine the ethics of parents of significantly disabled children choosing a medical "treatment" that stops their growth, both in size and in sexual maturity. In effect, it renders them physically permanent children. If there are people who don't immediately get why this is wrong and extremely creepy, nothing I say is going to make any difference. Plus, others have done a great job of responding already.

Still, I've got this blog, so ...

It begins and ends with consent. As described, this "treatment" is only used on children who are intellectually disabled and don't communicate. In other words, they can't give consent to such drastic procedures, both because of their age and, more significantly, their disability.

Anticipating an objection: It's not the same as parents giving consent for a child to have life-saving heart surgery. This "treatment" is in no way necessary to a disabled child's better health, and is not even close to being "life saving." At best it is exactly the kind of optional but consequential procedure that would normally absolutely require informed consent ... but in these cases, the children can't give consent and aren't even asked.

In fact, it's hard to imagine parents daring to ask a fully conscious, communicating child whether they would agree to have their growth stopped and adulthood cancelled, to make them easier to care for. But why not? If it's all about physical convenience, what difference does their intellect make? I'd never say never, but I think even supporters of this procedure would shudder to look an 8 year old son or daughter in the eye and say, "Look, we really think it's for the best if you just don't grow up. You'll be a lot easier to take care of if you stay small and never experience puberty. Okay?" It's too horrific to contemplate, but it's the only acceptable situation I can think of in which to discuss this sort of thing. The only reason any parents even consider this is that their children's cognitive and communication disabilities spare parents the obligation of asking them. But that's exactly why it's unthinkable.

Let's look at this another way. Here you have what are reputed to be the most "severely" disabled children living. Their parents decide that to make caring for them easier, they're going to mess with the one thing they can still do more or less like other people, grow and develop into adults, in body if not entirely in intellect or conventional maturity. They've got one thing that makes them like other people, and you take that away from them, too.

A few more thoughts:

How much help is this "treatment" anyway? It makes a child easier to move around, but that seems like a pretty small benefit to get for radically and permanently altering your child's body chemistry and development. It would be less traumatic and just as useful to bolt sturdy grab handles onto their sides, so they can be carried like a briefcase.

Hysterectomies too? Really? Do we detect a bit of weird sexism thrown into the mix? Are they castrating boys as well? I guess as long as you're tinkering, you might as well mess around with their sexuality, too, because monthly periods are unpleasant and erections are ... what? awkward and embarrassing?

And what's the deal with calling these kids "Pillow Angels?" Nobody explicitly says they do this thing specifically in order to keep their son or daughter a perpetually cuddly child. But, with all the sentimentalizing and infantilizing language they use, it seems like in at least some families there are bizarre ideas, obsessions, and mythologies of childhood in play. Maybe the parents are just freaked out at the thought of providing all this intimate care to a big, hairy guy or a fully developed woman's body. Nothing cute or cuddly about that, right?

Why don't these parents, doctors, and "ethicists" fight this hard and tenaciously for better support services, for families and for adults with significant disabilities? I get that activism doesn't come naturally to everyone, but is turning your child into a permanent baby doll really better than advocating for better funding or working to pass better long term care legislation? Are we really going to say that massive body alteration is an acceptable substitute for decent disability services and social justice?

The most important thing missing from the New York Times Magazine article is that for disabled people it is a personal attack on our personhood, even when it's not happening to us personally. This point is critical, because counter-critics will say that vocal disability activists can't speak to the issue because our disabilities aren't like these kids' disabilities. First of all, there are many of us who are as physically disabled as them, who can really speak to this quite directly. Plus, we have all experienced at some point in our lives the horror of feeling that control our lives and bodies has been deliberately taken out of our hands, by others, precisely because we are disabled. And the "others" doing the taking are almost always either experts with medical degrees that outrank us, or loved ones who, after all, only want the best for us. You simply can't discuss this dispassionately and insist it's purely practical or an interesting head-scratching moral dilemma. The emotional, even existential component is essential.

About all we get in the article is that disability activists are shaming these parents on social media. So instead of having a valid point of view based on personal experience, we are just another gang of cranky online social justice warriors who are making parents feel bad.

We are talking here about using unnecessary medical procedures to make social policy, with dire and to some extent unknown consequences for real human beings ... without their consent.

Yes, it all comes back to consent. Every other argument is moot. You can't do this to people ... any people ... without their informed consent. If you can't get consent from the person most affected, then don't do it. End of discussion.

Unless, of course, we decide that severely disabled kids who don't communicate aren't actually people. Maybe they're something else? If that's the case, then it's all good! Is that, in fact, what we're saying? Is that what we want?

On a more personal note:

I don't get truly angry much. When I read about some injustice or bad policy affecting disabled people, my anger usually dissipates pretty fast as I think about all the arguments and counterarguments, put myself in other peoples' shoes, play Devil's Advocate, etc. I intellectualize things, probably too much. In this case, I started out kind of bemused, ("Wait, what???), and the more I thought about it the angrier I got. That means something.

What Would Mom & Dad Do?

I have been thinking a lot about how parents of disabled children talk about, share, and interpret their experiences … and with whom. I am thinking partially about the #CrippingTheMighty thing, a clash a website about disability that has a distinctly parent-centered and traditional disability paradigm flavor, and adults with disabilities, most of them bloggers, and people who consider themselves disability activists and proud participants in disability culture. One of the biggest points of contention is whether it is responsible and ethical for parents to share intimate details about their disabled children, and whether it’s ever okay for parents to share negative stories about their kids, or publicly describe their own darker, more despairing feelings about their children’s disabilities.

I find myself wondering whether my mother or father would have gone on social media or blogged about their feelings and experiences when they had a disabled child they named Andrew, if such technologies had been available to them 48 years ago. As it happened, I don’t think either Mom or Dad ever did anything to share their feelings or thoughts on disability publicly. They talked with close friends and family of course, thought I doubt they did even that very often. I know, or I was told, about an incident where one of my mother’s friends sharply delivered Mom a bit of a verbal smackdown when she was having a very low moment, a few months after my birth. It’s my mother herself who told me about it years later … how her friend said something like “Well, it sure would have been easier if he’d never been born, wouldn’t it?” probably in a very sarcastic and severe manner. Mom said this was a major turning point for her, shifting her abruptly from “Why me?” mode into the “Get on with it” mode she pretty much stayed in until the day she died … at least as far as me and my disabilities were concerned.

The point is she never made any of this public. I guess that’s what I am doing now. Mom died about ten years ago, but now I’m wondering anyway whether it's ethical for me to share this story about her. Mom never made a public issue of me or my disabilities, or her feelings about them. It’s not because she was ashamed, or to protect me from some perceived embarrassment. I think it’s because of some very old-fashioned, WWII-era, “Greatest Generation” old-time liberal, and WASP values. Don’t call attention to yourself. Don’t puff yourself up or brag. Don’t complain about things for yourself. Fight for social justice, but don’t make it personal. Don’t be selfish or narcissistic. Keep private things private. Don't share your feelings with strangers, just to share your feelings. Don't look to others for validation.

Mom and Dad imparted these values to me, and they have mostly served me well. Over time, I have had to revise some of them, most notably by loosening the unwritten taboos against self-advocacy. When you are, in fact, part of an oppressed minority … in my case disabled … self-advocacy is a necessity, not an indulgence. I have also come to appreciate the benefit and value of talking publicly about the disability experience, though I still mostly prefer philosophical and policy discussions over introspection.

I don’t think it would ever have occurred to my parents to share their deepest feelings about me and my disabilities in anything like social media, blogging, or essays published in something like “The Mighty” or the “Huffington Post.” On balance, I think that’s to their credit. On the other hand, if they had been persuaded to share, they might have done it really, really well, and I think they would have had all the necessary instincts of self-criticism to prevent them from making fools of themselves, or me, in the process. So maybe it's a loss that they never really had the opportunity.

Maybe what we should shoot for is for parents of disabled kids to feel a bit more free than my parents did to share their experiences, but with a bit more of their reticence and their discretion. Would that be so hard to achieve?

Odo and The Scientist

I re-watched a TV episode last week that felt a lot like it was about disability, even though it wasn't about disability at all.

The show was Season 2, Episode 12 of the 1990s show Star Trek: Deep Space Nine, "The Alternate." The episode's main story concerns Odo, a regular character on the sci-fi show with highly unusual origins and biology. Odo is a Shapeshifter. He is, at this point in the series, assumed to be one-of-a-kind. His natural resting state is liquid, and, with practice, he can become anything that he wants, anything from an animal to a piece of furniture. Most of the time Odo functions as an adult humanoid, and is the Deep Space Nine station's head of security or "Constable."

In this episode, Odo reunites with Dr. Mora Pol, the Bajoran scientist who years prior had been in charge of studying him and helping him fit in with "normal" society. In previous episodes, Odo had hinted that being a research subject after being "discovered" was a mixed experience at best. He learned a lot about his origins and abilities, but quickly grew to resent being gawked at and essentially imprisoned in a lab, existing mainly to satisfy the well-meaning but rather insensitive scientists' professional curiosity. Dr. Mora claims to have loved and cared for Odo, but it’s not hard to detect layers of exploitation and condescension in his manner.

This theme is underscored by the tension between Odo and Mora when Mora visits the station. Odo behaves correctly but quite coldly towards Dr. Mora. Mora outwardly praises Odo's accomplishments like a proud parent or former teacher, yet all of his compliments come barbed with a vague disapproval, a sense that Odo has made poor decisions. He shouldn't have left the lab. He did a disservice to himself and the scientists by abandoning their research. And, most disturbing of all, Mora implies that Odo's acceptance by the other station personnel is superficial ... that as a Shapeshifter he is still someone apart, and in that sense really "belongs" with people like Mora himself, who really appreciate Odo and can help nurture his journey of self-discovery ... back in the lab, of course.

The relationship between Mora and Odo remind me of so many aspects of being an adult with disabilities, having grown up with disabilities, and the intimate but contentious relationships many of us have with doctors, therapists, teachers, and even our parents. People are rarely entirely selfless, or completely self-serving. The problem is that, like Dr. Mora, people in a position to help and care for disabled children and youth often have trouble acknowledging how personally invested they can be in our lives and decisions. Plus, their benevolence often comes across as paternalism, and a lack of full recognition of our agency, our personhood. On the other hand, we, like Odo, often find it hard to recover from old wounds, and have empathy for people who meant well, but made mistakes like all humans do ... and Bajorans for that matter. My sympathies are with Odo, but I do feel he was a bit too hard on Mora. Odo does want to learn more about himself and his origins. It’s just that he feels that the best way to do this is to live a normal and useful life, with all it’s variety and even danger. Mora thinks Odo should focus exclusively on himself, and essentially hide away in a safe place from a hostile world.

Even if you're not into science fiction shows, if you grew up with a disability or have spent part of your life treating, teaching, or raising a disabled child, watch this episode. It says more about the disability experience than most shows that are explicitly about disability.

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Some Things Should Be Easy To Fix

Dad Regularly Carries Son With Disabilities Into School Because Of Disabled Parking Bay Row

Amy Packman, Huffington Post UK - October 2, 2015

So much stupid ...

If we take this Geoff Pearson at his word, his whole objective is to get his council government to stop being sloppy with local codes, like how to mark a disability parking space properly. Now, he may be using this technicality as an excuse, but have a hunch that he isn’t. There’s someone like him buzzing around every municipality ... obsessively concerned with procedure, and sort of oblivious to practical outcomes and how they affect actual people.

Of course, none of this would be an issue at all if the local council would get its act together and repaint the parking space the proper way. Public officials don't like admitting mistakes though.

There’s not much you can say about the Wallaces. Not being able to park in that space clearly causes a problem for them. At first I didn’t understand how a school could have so little parking, but I live in a small US town where schools sit on extensive grounds and have dedicated parking lots. Edinburgh is a centuries-old city, where I guess at least some schools have only street parking.

I usually advocate dealing with these kinds of disability issues systematically, through official channels, formal complaints, and policy analysis. In this case, though, it seems like what’s missing is some basic human decency and one-on-one communication:

Mr. Wallace: “I know you have a beef with the council over that parking space, and I sort of agree with you. But could you just not park there? I really need the space so its easier to take my son to school."

Mr. Pearson: “Sure, okay. Sorry."

Or how about this:

Council Executive: "We won’t be taking up new parking issues until January …"

Mr. Wallace: “It’s just a mistake in how it was laid out and painted. Can’t you just fix it now?"

Council Executive: “Well, okay, I guess we can.”
Mr. Wallace: Ta!

Kind of a Kumbiaya scenario, but is it really all that unrealistic? We get so caught up in processes and making points that I think we sometimes pass up opportunities to just solve stuff like human beings.

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Shared Abilities Article

Shared Abilities just posted what I hope will be a series of items where parents of kids with disabilities “Ask Andrew” questions about what it is like to grow up from being a disabled child into a disabled adult. Obviously, I have mainly my own experience to draw from, and it’s not like everything went exactly the way it’s supposed to for me. But I figure the failures and shortcomings taught me just as much as the victories.

The first article is: Adult with Disabilities Shares What Kids with Disabilities Need to Learn.

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Disabled Youth & Vampire Slayers

Early yesterday morning, while I lay in bed snoozing and listening to a podcast, I came across some unexpected insight into part of the disability experience, thanks to Buffy The Vampire Slayer.

The podcast I was listening to is called Dusted, in which husband and wife professional writers dissect and analyze every episode of Buffy, focusing particular attention to writing and storytelling technique.

The insight came when Loni and Alastair were talking about Joyce, mother of Buffy, (teenage slayer of vampires), and Giles, Buffy's “Watcher,” that is, her trainer, supervisor, and mentor. The thought that woke me up fully is that Joyce and Giles’ different approaches to Buffy and her “special” identity look a lot like the different perspectives we see on what it means to have a disability.

To be clear, Buffy isn’t disabled. The premise of the show is that she is more or less “chosen,” by mysterious forces nobody controls, to be “the one girl in all the world” endowed with the strength, durability, and instinct to slay vampires and demons … who in the universe of the show are quite real, though most people don’t know it. Buffy did not choose this role. Although it comes with near-superhero powers, being the “chosen one” is also a massive burden, and pretty much precludes living a “normal life.” In fact, being The Slayer means a rather short life is pretty likely. Much of the first two seasons of the show involves Buffy coming to terms with her identity and duty. She wants to be a “normal” teenage girl … go to school, have friends, have a boyfriend, go to dances … and she does all of those things to some extent. But as Giles often reminds her, her life can never be “normal.” Whether she likes it or not, there is an important part of her identity that she can’t change. She can try to deny it, even run away from it, but on the show it’s clear that she will only find a semblance of peace and fulfillment if she embraces it.

(Spoilers ahead!)

Joyce and Buffy

Joyce finds out that Buffy is The Slayer late in the second season, and while she accepts the truth of it rather more quickly than any real-world parent would, her reaction reminded me of a parent dealing with a child’s disability. Notably, there are one or two moments where the writers have Joyce draw direct parallels to having a child who turns out to be gay, another type of identity where some people mistakenly hope that a little determination might make it not be so. “Have you tried not being The Slayer,” Joyce pleads. Later, when Buffy gets great SAT scores, Joyce latches onto this like a life preserver. Buffy can go to a college far away and escape this Slayer thing! Obtain all the trappings of normalcy, look normal and act normal, and you will be normal.

Buffy and Giles

Giles has a more subtle view. He knows, and endeavors to impress on Buffy, that she will never live a normal life. However, she can live a good life. In fact, fulfilling her unusual “destiny” is an important part of Buffy living a good, and fulfilling life.

Buffy's "parents" both want the best for her. Neither wants to see her suffer or struggle with things a teenager should never have to struggle with. But Joyce still thinks there might be a way out, while Giles knows there isn't, but that it still can be OK for Buffy, if she is proactive and embraces her role.

I am not suggesting that having a disability is anything like being a superhero … a tempting but misleading comparison. Having a disability isn't much like being a mystically chosen vampire slayer with a life-long, world-saving mission.

Yet, there are similarities.

Disability is partly a condition, partly an identity, something nobody chooses, and most people can't really escape. Like Buffy, you can live a good life, but there's going to be some danger, hardship, and some very specific kinds of pain. Most people, even some of those closest to you, don't really "get" what your life entails.

What hit me like a freight train is that Joyce and Giles’ different understandings of Buffy’s “special” identity tells us a lot about how we view the road ahead for youth with disabilities.

The “Joyce" strategy is to turn away, mask the disability, don't acknowledge or "give in" to it. Try just the right things, try hard enough, and you might just make it go away. I think this works for some people with certain kinds of disabilities, but more often it simply delays a real reckoning. Still, it’s an understandable reaction, and it may be going too far to say that it is entirely wrong.

The “Giles" approach may at first seem bleak, but it is just as loving and optimistic. He knows that Buffy’s unique identity is inescapable, and that the best thing to do about it is make the best of it. He doesn’t see this as settling for less, either. Being the Slayer is a gift. Buffy has an important role to play. And, her life can be wonderful as much because of that as in spite of it. It’s just going to be very different from what Joyce, and even Buffy, may have had in mind. It is like that with disabilities, too.

Whether you are disabled yourself or have a friend or family member with a disability, what are you … a Joyce, or a Giles?

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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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