Growth Attenuation

/
Photo of a man with his forehead planted onto an open laptop computer's keyboard

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.

Tebow's Proms

/
Cartoon picture of dancing man and woman dressed for formal party

I’ve seen some chatter lately on the Internet about American Football star Tim Tebow’s charitable project “Night To Shine,” which funds prom events for high school age students with disabilities. They are controversial among what is most likely a small minority of people, most of whom are disabled people themselves.

The interesting thing is that there is an unusually wide gap between how simply and umcomplicatedly “good” the “Night To Shine” program looks to the casual observer, and how instinctively troubling it is for those of us who actually went through high school with disabilities ourselves. What’s the crux of the problem?

In a nutshell, arranging separate proms just for disabled kids validates and enables the barriers that prevent disabled kids from going to their schools’ regular proms. It’s essentially giving up on the idea of social inclusion. I get that to an actual disabled kid, a fun night out might be preferable to sitting at home alone to make a political point. But wouldn’t it be even better to get help and support to be able to go to the prom everyone else is going to?

Why do we need separate proms? And why isn’t the Tim Tebow Foundation asking that question?

I have a suggestion. Next year Mr. Tebow should instead offer to help pay for any prom that takes strong steps to include students with disabilities. You care about disabled kids. You’ve got money and the organizational tools to do ambitious things. Put your name and resources into integration, not segregation.

Note: I wrote about this type of thing last October, too.

Return Of The "Pool Noodle?"

/
Photo of a child's feet in sneakers standing on a one-step platform with a while cane for the blind out in front

Just short of a year ago, we read a similar story, about an American school district taking away a young blind boy's white cane because they said he used it to threaten harm to someone. They gave him a semi-flexible foam "pool noodle" instead, and shortly afterwards, gave the cane back to him and apologized for confiscating it. Compared to this British girl, that case seemed like more of a real dilemma. One way or another, safety was at least a bit of a reasonable factor. The disability rights consensus was 1. Don't confiscate a disabled person's main tool for adaptation, and 2. Do make sure that young disabled children are trained in how to use these tools safely and appropriately.

The same formula probably should apply for Lily-Grace, or any kid just starting to use a white cane, crutches, or a wheelchair. Nobody is saying she's reckless with the cane, but she's seven years old, and there's a method to using a while cane. You don't automatically know what to do with a cane just because your blind and they had you one.

Both situations underscore how small disability-related problems get out of hand when one or two people with some sort of veto authority get antsy about anything unfamiliar going on in their professional territories. It gets worse when they happen to have a personal preoccupation with certain aspects of disability life. It may sound strange, but there are people who have very firm opinions about the use and abuse of white canes, crutches, ramps and elevators, and wheelchairs ... not to mention service animals. And they absolutely do not see it as ableism in its purest, simplest form. I suspect the officials responsible for both of these crises felt that they were the only ones with the good sense to raise concerns and put the brakes on well-meaning but carelessly permissive policies. Couple that with administrative procedures that handle contentious issues too slowly and deliberately, and you get, I think, maybe 75% of the news stories about ableism that make it into the mainstream press.

It's so galling when it is happening, that it's easy to froget that most of these situations are resolved more or less properly in the end. Blind kids get to use their white canes in school. Customers can, usually, enter coffee shops with service animals without it making the local news. Most people don't regard ramps and elevators as expensive luxuries, at least once they are fully installed. But in the meantime, massive time is wasted futzing around with pointless deliberations when the eventual outcome is rarely ever in real doubt. This is where a bit of autocracy can actually be a good thing. We need more school principals and headmasters who are willing to say, "I appreciate your concern, but unless there's an actual problem, blind students will be able to use white canes ... or whatever they need ... in our school. That's the way it's going to be."

----------

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.

Photo of the character OdoThe 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.

Photo of character Dr. MoraThis 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.

----------

Shared Abilities Article

/
Shared Abilities logo. Abstract illustration of a person holding both hands up in the air.
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.


----------

Airline Incident Followup

/
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.

----------

Video Of The Day

/

TED Talks are meant to showcase ground-breaking, innovative, unorthodox people and ideas. This is pretty basic, entry-level disability stuff.

I don’t meant that as an insult to Torrie Dunlap. She does a very good job of explaining accessibility, adaptation, inclusion, and the different models of thinking about disability. I especially want “special needs parents” to see this. It's a very kind but forceful pushback against the "special" everything impulse.

Still, it is frustrating that these simple, quite standard and established ideas about disability are apparently still new enough to mainstream ears to be the subject of a TED Talk. I guess it’s good, then, that even though the whole TED Talk phenomenon can get a little irritating, it has given a valuable outlet to disability leaders and role models like Maysoon Zayid, the late Stella Young, and others.

I just wonder how many more decades it will be before ideas like this provoke nods and yawns instead of applause.
----------

Newbie FAQs: Advice For Children And Youth With Disabilities

/
FAQs in big three dimensional blue letters, with a computer mouse
What Do Children And Youth With Disabilities Need To Know About Disability?

There are thousands of ways to answer this question. Most of them are based on a few core ideas about disability. These are ideas that don’t always come naturally to young people with disabilities or their parents, which is why I think it’s a good idea to spell them out.

- Physical access and accommodations to your disability aren’t personal favors or privileges. They are rights you have as a citizen. No matter what your disability is, or how “severe” it is, you have the right to go everywhere non-disabled people go, and do everything non-disabled people do when they get there.

- You may need help from other people all of your life, but that doesn’t mean you have to make people like you all the time. It’s good to be kind, polite, and cheerful, but you can also be angry sometimes, sad sometimes, grumpy sometimes. It’s also okay to decide that you don’t like someone. You won’t be abandoned just because you made a caregiver angry. You are not a burden. You are a person, and you don’t have to “earn” your care by being a perfect angel and never complaining.

- It’s good to make careful decisions about the things you want to do, and how you use the energy and resources you have. But don’t give up on exciting opportunities because you think might need help and you don’t want to be a bother.

- You don’t have to be able to do everything by yourself, exactly the way other people do things, to be independent and successful. It’s okay to do things differently, and it’s okay to get help. Independence is about making your own decisions and organizing your own life, not being able to walk or tie your shoes.

- There are literally millions of people with disabilities all over the world who have an idea of what it’s like having your disability. Don’t turn away from others with disabilities because disability makes you sad, or because you think it will keep you from fitting in and being more “normal”. Other disabled people can be a great source of advice, friendship, and support you can’t really get from anyone else.

Incidentally, these are pretty important ideas for adults new to disabilities as well.

 Does anyone have other ideas? Share them in the comments!
----------

Followup

/
Anne Grunsted, The Mighty - February 6, 2015

I am posting this as a followup to last week’s item on parents of disabled kids meeting … or not being interested in meeting … disabled adults. Ms. Grunsted’s encounter was by chance, not design. Maybe that makes it even more valuable. I also want to note that personally, I would probably shy away from overly arranged meetings. Organization tends to introduce artificiality. Arranged meet ups don’t bother everyone though, and I do think they are far preferable to the current situation … where parents of disabled kids, and adults with disabilities, seem to occupy parallel, never overlapping worlds.
----------

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.
———————