Return Of The "Pool Noodle?"

School bans blind girl from using her walking cane – for fear of tripping up teachers
Emma Lazenby, BT.com - November 17, 201

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."

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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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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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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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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.

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Newbie FAQs: Advice For Children And Youth With Disabilities

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!

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Followup

When My 2-Year-Old With Down Syndrome Met a Grown Up Like Him at the Hair Salon

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.

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Max & Hank (and Adam & Kristina)

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

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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More Thoughts On Education

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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Caught Between Sides

Disability Advocates Sharply Critical Of Plan To Ease Testing

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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The Boy With The Cane. Or, What The Heck Is A "Pool Noodle"?

School punishes blind child by taking away cane and replacing it with a pool noodle

Fox2 Now St. Louis - December 17, 2014

So, first I had to look up what a “pool noodle” is. Turns out it is a long, thick, semi-flexible “stick” made of squishy styrofoam, used as a toy or perhaps a sort of float by kids in swimming pools. Looking at pictures of “pool noodles”, I can see right away what the school staff were thinking. It’s long and semi-rigid, so it could, in theory, provide some of the sensory feedback of the canes used by blind people. At the same time, it is made of a material that can’t really hurt anyone, even if used as a deliberate weapon. I’d bet real money that there is at least one person at that school who really, honestly thought they had come up with a brilliant solution to a perceived disciplinary problem.

Of course, one suspects that the “problem” was either overblown or nonexistent. Dakota’s parents say it was all a misunderstanding … that the bus attendant might have seen him raise his cane and assumed it was to hit someone.

To me, this isn’t the issue. Dakota is still a young boy. It’s entirely possible that on occasion, he’s used his cane in questionable ways. It’s also possible he’s still learning how to control his cane, and not accidentally bump it into people or trip them up. The point to me is that the school should have a more thoughtful set of guidelines and procedures for how to deal with Dakota if he should misbehave, as most 8-year-olds misbehave from time to time. And a central tenet of any disciplinary plan should be to never take away an assistive device a child depends on for independence and mobility. This would apply to canes, crutches, a speech device, a wheelchair, or any other equipment that helps them with their particular disability.

It seems to me that part of the formula for kids like Dakota should be some sort of peer counseling “real talk” where someone he trusts … maybe a blind adult ... tells him, as a friend and ally, that assistive devices should never be used as weapons or to cause mischief. Teach disabled kids that they have an absolute right to their devices. They are not revokable privileges like a cell phone. But they also have a responsibility to use and look after their devices with great care. That seems like an essential bit of “growing up” that disabled kids, in particular, have to do. In a way, it’s part of learning self-advocacy.

As a side note, I found it kind of appalling that apparently, the cane was supplied by the school, which is one of the excuses the school used for taking it away. I suppose it’s good they provided the cane, if Dakota’s family can’t afford one, but also reminds me of all the ridiculous angst some school administrators go through over fears that school-provided assistive devices will be “misused” … including being taken home. Especially with something like a cane, whoever pays for it ought to just give it to the person who needs it, with no strings attached.

Update: Via @SFdireworlf, Dakota's school district apologized for taking his cane away. 1. I hope the district also agrees on a disciplinary policy that excludes confiscation of adaptive devices, and 2. I hope Dakota gets a cane of his own.

Class Photo Time Again!

Disabled Arlington student excluded from group photos

Lauren Zakalik, ABC / WFAA Channel 8 - December 9, 2014

Didn’t something like this happen just last year? Why yes. Yes, it did.

There is one bright spot in this story, compared to the one from last year. Here, the student is extensively quoted in the article, and seems to have at least tried to be involved in the picture setup and negotiations. On the other hand, it bugs me that even in its apology, the school district officials refer to Tyson’s mother, not Tyson, himself … as if the offense was to “Mom”, and not Tyson.

It seems like between schools and the professional photography business, there ought to be pre-vetted procedures for these kinds of stupid dilemmas. Some disability accommodations are genuinely difficult. Taking inclusive class photos should be dead easy.

Stella Young's Letters

Stella Young's Letter to Herself at 80 Years Old

Stella Young, Sydney Morning Herald - November 22, 2014

Letter to My Younger Self

Stella Young, ABC Ramp Up - October 4, 2013

Links to Austrailan comedian and broadcaster Stella Young's "Letter to My Younger Self" have been popping up on all sorts of disability blogs and websites since last year. Now we have a similar letter by Young, this one to herself at the other end of the lifespan. Together, these letters paint a vivid picture of one disabled woman's wry, spirited observations about life with a disability. At the same time, they express truths and feelings that are immediately relatable for all people with disabilties ... especially those of us with signficant physical disabilities we've had from childhood. Together, these "letters" could also be a useful introduction to an entire way of viewing life with a disability. It is a combination of pride, (so much more than "self-esteem"), self-awareness, clear thinking, humor, and zest for life.

I want every high school age kid in a wheelchair, who uses crutches, or who is sure that their bodies are too weird and messed up to be loved, to read these letters before they graduate into adulthood.

A New Disability Show, Maybe?

Last week, I wanted to know, “Where are the disability shows?” I assumed that there weren’t any disability-themed TV shows, or shows with disabled characters in the works for the coming year. Then yesterday, I noticed some Tweets from the Television Critics Association summer tour, discussing an upcoming new TV show called Red Band Society.

Although it doesn’t really seem to be intended as a show about disability, it looks about as close as I have ever seen to my dream disability show, about people with various disabilities living together in some kind of care institution. The kids in "Red Band Society" show seem to be more “sick” than “disabled”, but I have a feeling the two kinds of experiences on may overlap on this show.

It's interesting that none of the TV critics I follow seem to have recognized it as a disability show, as they did right away with some of last year's new shows. It seems more like they are expecting the show to deal with health care issues. Or, maybe they're not sure what the show is really going to be about.

I hope Todd VanDerWerff's prediction that the show might fall back on tired illness / disability tropes doesn't come true. The premise of this show is so promising ...

It's also worth noting that the Fox show is a remake of a Spanish / Catalan TV show called Polseres Vermelles, or "The Red Band Society". I'm hoping to find a way to check out that series, too.

Parents & Kids

I had some interesting Twitter conversations Wednesday afternoon, and more last night, in connection with a recent NPR story about a family raising a son with severe disabilities. Emily Ladau of Words I Wheel By had written a terrific blog post about it. Earlier the same day, I had also read a post about the same story, from a different perspective and drawing somewhat different conclusions, by Ellen Seidman of Love That Max. Emily is a young woman who has lifelong physical disabilities. Ellen has a young son with cerebral palsy. I read both of their blogs regularly.

Both bloggers are compassionate, thoughtful, insightful, and fair-minded. Both have always demonstrated passion for their point of view, but also a willingness and ability to see things from other angles.

The main issue about the radio story, which pretty much everyone seems to have liked in general, was that the parents in the story allowed photos to be taken of their teenaged son, naked except for a "diaper", and that NPR posted them with the website transcript of the story. Several commenters to the online version of the piece were upset, feeling that the young disabled man's privacy and dignity had been compromised, without his consent, by his parents allowing him to be photographed, and by NPR for posting them.

Emily agrees in her blog post that this was problematic, and described how kids, in particular, who grow up with disabilities often have their privacy violated, usually without thinking, by well-meaning clinicians and even parents. She feels that parents have a responsibility to protect their kids' dignity, especially in news and social media, no matter what higher mission might be in play.

Ellen's piece discusses the importance of showing people what caring for a disabled child means, in very concrete terms. She cites some of the other commenters, parents of disabled kids, who lament the fact that people just don't understand what it's like for them. Although she doesn't draw a hard and fast conclusion, Ellen seems to imply that the value of public exposure may, at times, outweigh the potential negatives.

I generally agree more with Emily's take, though I don't think Ellen is entirely wrong, either. I also sense that there is some misunderstanding of what some folks objected to. It isn't about body shame or wanting to hide difficult realities, it's about privacy, consent, and the duty of others to protect people who may not be able to give meaningful consent.

This brought up another thought that I have had before, but found it hard to describe. I think that there are some very significant ... and very natural ... differences, divides, and even conflicts between how parents of kids with disabilities think about disability, and how kids and former kids with disabilities think about it.

For instance, parents seem to feel that people don’t understand what they are going through raising disabled children. They seem to be hungry … not so much for sympathy, but for acknowledgement. There is a feeling that everyone's attention is focused on disabled children, and that their parents are too often forgotten and discounted.

On the other hand, disabled kids, and especially adults who had disabilities as children, look at the same situation and feel that parents get all the focus, have the biggest voices, and define the image and meaning of disabled children to the public. Since I am one of them, I’ll go ahead and say that “we” often feel like we are the forgotten ones, that our perspective is left out of our own stories about childhood disability. It’s not just that people choose the parents’ perspective over ours. It’s that they sometimes forget that we even have a perspective.

In a sense, parents of kids with disabilities, and kids with disabilities themselves, are competing for attention and a voice. Only it’s more complicated even than that. Often, it’s adults with disabilities who compete to be proxy voices for disabled kids who haven’t developed voices of their own. We bring our own experiences with us to these discussions, and often view parents of disabled kids with empathy, but also caution. Our experience lends us some credibility, but our “baggage” sometimes causes us to grind personal axes instead of looking clearly at how things really are.

I’m not sure what parents of disabled kids think, broadly, about disabled adults. Occasionally I have read hints that they feel we are claiming a role that isn't properly ours. Also, that the more articulate and organized among us don't understand how our ideas of freedom and agency miss the mark with children who have very significant physical and cognitive disabilities. That seems like fruitful ground for honest debate.

A couple of months ago a parent blogger and I did a joint blog post in which she asked me questions and I provided my answers about growing up with disabilities. I would love to see that kind of exchange happen more often, where parents of kids with disabilities, youth with disabilities, and adults who grew up with disabilities could discuss and debate our different perspectives on things like education, inclusion, therapies, caregiving, future planning, and scores of other issues we all face, together.

Maybe a Blog Hop or Link-Up? What do you think?

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Addendum:

For what it's worth, I have had phases in my life when I was looked at from top to bottom by all sorts of medical professionals. It did bother me a bit. Not because of any shame or embarrassment about my body, but because I would occasionally feel like I was being treated as a curiosity or, quite literally, as a learning tool for interns and student nurses. There's a use for that, but it always felt much better when the people looking would ask, nicely and respectfully, if I minded.

In this case of the Lees and this article, I am willing to concede that Justin Lee probably isn't aware of his photo being publicized. However, if that's so, then I think it only makes it more important for people who know him to be extra cautious about exposing him to the public. And I think that the descriptions in the story were more than enough to make people understand the situation, without the need for photos.

Photo Of The Day

From the WeHeartIt Tumblr blog, via Disability Fashion Project.

Happy Father's Day!

I found it fairly easy to write a Mother’s Day post about my mother, but as soon as I started this Father’s Day post, I realized that it would be much more difficult. Not because I have bad feelings or terrible “trigger warning” stories about Dad, but because his approach to my disabilities was complicated and conflicted.

To try getting a handle on things, I will simply note a few things about my father, Peter Pulrang, and hope they amount to some kind of coherent idea:

- I was born when my parents were around 40 years old, and their only other child, my brother Ian, was 14. So, I was a surprise in more ways than one. Sort out the implications of that if you dare to try ...

- Dad was a pediatrician, and though I am prejudiced of course, scores of people who live in my home town who I don’t even know have told me he was a terrific doctor for his patients and their parents. I am positive that Dad’s connections in the medical community amount to a pretty massive dose of privilege that I am happy to have had, especially when I was too young to know it.

- Even though he was a doctor, and my mother didn’t have a very high opinion of the medical profession, Dad was at first not the most committed of my two parents to pursuing aggressive medical care and therapy for me. Dad’s medical philosophy was minimalist, and I think that until he knew more clearly that there was perhaps less wrong with me than met the eye, his higher priority was protecting me from pain and suffering. I can only love him for that, but those of us who have had disabilities all our lives know how mixed the results of parental protectiveness can be.

- On the other hand, in many ways, Dad had the harder job of it, because he was definitely the point person and organizer of all of my medical care, and also the one to oversee my often painful physical therapy. He never entirely rebelled against this role, but I can still pretty clearly remember that he hated the exercises, especially, because they required him to cause me physical pain. Pediatricians cause little kids physical pain all the time of course. That’s why in general, doctors aren’t supposed to treat relatives. But I guess being a father doing home PT with your kid doesn’t count. Maybe it should.

- Dad was still helping me get dressed every day when I was a freshman in high school. I wish I could say I was the one to insist on my own independence, but it was Mom who stepped in and said enough already. It took almost no time, effort, or any sort of Occupational Therapy for me to learn how to dress quickly, so I probably could have been doing it much earlier. I think Dad just kept helping me out of habit, out of impatience (he hated seeing a person struggle to do something “the hard way”), and because helping me was how he expressed his love. It sounds too transparent and awful to be common, but I really wonder how many parents unconsciously use a child’s disability to preserve a sort of idyllic parent-child relationship well past its expiration date.

- My father ended his career in Public Health administration. In his professional capacity, in the early 1980s, he met some disability rights activists. I think that’s where Dad started to pick up some of the more positive “Social Model” ideas of Disability Rights and Independent Living. He tried, valiantly, to introduce these ideas to me when I was a teenager, but I was, you know, a teenager, he was my father, and I was convinced that he was talking nonsense. To me, disability was nothing but an embarrassing pain in the ass, and the idea that it could be a political identity or something to be proud of was beyond my comprehension. It must have taken all the self-control he had not to say “I told you so” when years later I ended up working in the Independent Living Movement, and explaining to him the finer points of progressive disability philosophy. Sons can be super annoying, no?

- I am always in danger of forgetting this … but Dad had dyslexia, and I think maybe a mild case of ADHD. The latter is just speculation on my part, but the dyslexia was, I guess, the real deal. Of course, it had to have been most difficult in his childhood and teen years, at at time before anyone had any notion at all of learning disabilities. I don’t think his childhood was unhappy, exactly, but Dad was pretty specific in describing an education drilled into him by well-meaning people who probably only half understood what they were dealing with. This had to have affected his concept of disability, but exactly how I’m not sure. Occasionally, when I hear people say how remarkable I am to have done so well with my disabilities, I think about my Dad, who I don't think ever got proper credit for graduating from Princeton, and then McGill Medical School when reading and writing were such slow, laborious processes for him.

- Dad also experienced significant hearing loss later in life, probably due to exposure to loud engine noise as the Co-Pilot of a B-24 in the Second World War. He wasn’t fully deaf in either ear, but it affected his sense of connection to other people, making him feel more isolated and “left out” of things. Again, I think this must also have influenced how he viewed disability.

As happened with my mother, my relationship with my father was at its best when I was fully grown up and he was retired. We saw each other less, but developed a stronger, connection … not always agreeing, but always engaging.

Looking back, I can see that Dad and I had a relationship that was at the same time very unusual, and utterly typical. At any rate, I sure do miss him.

Dad getting into his trainer airplane, c.1943.

Dad and Mom, I think shortly before they married.

My brother, Ian in front, Grandpa Pulrang on the left, Dad on the right.

Dad and me ... 1986.

Dr. Peter C. Pulrang, 1925-2008.

More On Institutions

Uncertain Future at Institutions for Disabled Texans

Alexa Ura and Corrie MacLaggan, The Texas Tribune - June 3, 2014

There’s one thing that I’m sure is a factor in the ongoing debate over institutionalization and other more “sheltered” service models. People become personally invested in justifying positions that make their own choices look better. Parents of disabled children who have chosen institutionalization may have some good reasons for concern about the move away from large institutions, but I’m sure it’s also hard to hear again and again how fundamentally wrong the the entire approach is … the approach they at some point chose for their son or daughter, thinking (and hoping) it was the best. It’s hard enough to admit you have been wrong about something for years. It’s got to be especially awful to digest the possibility that a choice like this might have been tragically, horrifically wrong.

I’m not sure there’s an equivalent motivation on the other side. Yes, those of us who favor the end of institutions and segregated services feel personally about it. Some of us have been in such programs ourselves, and broader approval of our choice to leave bolsters our confidence that we made the right decision. Those of us who are disabled but have never been in more restrictive programs see others like us living such radically different lives, and we personally fear that we could end up there at any time, unless such places are phased out and closed for all time. I don’t think the self-justification motive is as strong with us, though, than it is for the pro-institutional “side”.

The other problem is that it's almost impossible in traditional journalism to deal with the more complex reasons why otherwise reasonable individuals support models that most people, on some level, feel are at best grossly out of date, and at worst cruel and corrupt.

In case you missed them, check out some other recent posts about institutionalization:

How Could We Have Thought It Was Okay? - May 24, 2014

Institutionalization Followup - May 25, 2014

Views from an Adult With Disabilities … Followup

Towards the end of my collaborative blog post with Kerith Stull of “Brielle and Me”, on advice for parents of kids with disabilities, Kerith notes that I didn’t say anything about, “therapy, IEPs, or equipment” – things we parents focus so much energy on in those early years.” A point well taken … and worthy of a followup!

I think I just figured that these were givens. As disability activist and artist Cheryl Green pointed out in a recent podcast, people are usually introduced to disability through the medical field. So, if anything, I worry that parents will see their children’s disabilities exclusively through the lens of medicine and rehabilitation, especially in the preschool years. Later on, parents learn more about some disabilities through the similar and parallel educational system, which can also come to dominate how they understand disability.

I certainly benefitted from my parents' pursuit of medical “corrections” that they hoped would give me more mobility and physical independence down the line. In my early years they committed me to fairly aggressive surgery and physical therapy. I did start walking when I was 3 years old, and both surgery and therapy tapered off a bit, replaced by less extensive ongoing PT and foot and ankle braces. I think I stopped having any formal physical therapy when I was around 13 years old.

I don’t know when or how my parents decided it was time to stop fixing me. Maybe they never really made a decision at all. Maybe my doctors just ran out of reasonable things they could do, and told my parents they were pretty much done. I don’t know what they would have done had my disabilities been different or more severe, but I suspect that they would never have let therapies, services, and gadgets dominate our family. They just weren’t like that.

One thing I am very grateful for is that my parents never let me think that I had to “work hard” and suffer through more and more hardships in order to achieve their goals for me. I know so many disabled adults who decades after their childhoods have simmering resentments and complicated relationships family because they got the message … intentionally or not … that they had to work harder, always harder, and that if they didn’t, they were giving up. Guilt trips happen in the nicest families, and disability is a fertile ground for them. My therapy was hard and painful, but I never felt that success or failure had anything to do we my character.

Maybe that’s an extra piece of advice for parents. Don’t let your child confuse therapy and rehabilitation “success” with their self-worth. No abstract performance goal is worth it if your child ends up feeling judged and persecuted by his or her own family.

Views from an Adult With Disabilities

The Road Ahead ...

(Cross-posted at Brielle and Me)

Kerith Stull is the mother of a teenage daughter with cerebral palsy. I started reading her blog, “Brielle & Me”, after she commented a few times on some of my blog posts. A couple of weeks ago, we started exchanging emails about doing a collaborative blog post with Kerith posing questions parents of children with disabilities might ask, and my replies as an adult who grew up with disabilities. This post is the final result. We are both posting the same article … with own own introductions … on the same day at the same time on our blogs.

Questions from Kerith, and my replies ...

When did you first realize you were different?

I don’t remember a moment when I realized I was different. When I reached puberty, I assumed dating and relationships were like athletics for me, something I could observe and know about, but not participate in. I was wrong, of course. At the time, though it seemed like the ironclad truth and it was the first time I felt bad about being disabled. Eventually, when I was a young adult and discovered the disability rights movement and disability culture, I started to realize that having disabilities isn’t just about being “limited” by my body. It was also part of my social identity, something interesting and energizing. I am still learning what it means to be disabled.

What good things did your parents do for you? (regarding your disability)

My parents drew a very firm distinction between “me” and “my disabilities". They emphasized my mind and downplayed physical things. That helped me avoid feelings of regret about not being a big, strong, athletic guy in my youth. My parents never got involved in any disability organizations. Although I am now an active participant in the disability community, when I was younger, not being connected to that community actually encouraged me to develop more diverse interests. Above all, my parents always made it clear that I would graduate from high school and then go to a four-year college away from home. This boosted my confidence and gave me a concrete goal for the first part of my life. After that, they let me find my own way.

What do you wish more parents would do for their disabled children?

Parents need to discuss the usual topics with their teenagers with disabilities so they understand the biology of sex, consent, and personal values. They also need to know that they are beautiful, handsome, charismatic, and desirable. Some disabled youth (and maybe you) will have hard time believing it, but they need to hear that this isn’t just wishful thinking. Romantic relationships can be part of their lives. (I highly recommend reading, “Dear 16-year-old Stella” by Australian comedian / broadcaster, Stella Young.)

Introduce your disabled child to adults who have disabilities. It doesn’t matter much if they have the same disability. The important thing is for your child to have the opportunity to look up to an adult who experiences disability in ways your child will recognize, and to see that happy, successful adulthood with disabilities is possible and common. (A great place to find appropriate adult mentors who have disabilities is at your local Center for Independent Living.)

A really good friend can be a life-saver for parents of disabled kids. On at least two occasions, close friends furnished my mother with a very loving kick in the backside when she was seriously stuck over some aspect of my disabilities. On both occasions, these friends told her unvarnished truths she needed to hear, and that helped her, and by extension me.

What can the general public do / say to help people with disabilities?

- Don’t dismiss us, but don’t put us on a pedestal, either. Remember that we are human beings with our own will and agency. We are not symbols, metaphors, tests, or object lessons to make you a better person.

- Trust that we know what we are talking about. Like anyone, we sometimes misunderstand things, deceive ourselves, or just get things wrong. But, in general, we are usually more on top of things than you might think and we certainly know about our own experiences better than anyone else.

- Don’t support disability groups that:

 are not led, at least in part, by disabled people.

 use fear or pity to gain support.

 provide their services in segregated environments, removed and sheltered from the community.

- Support public policies and practices that increase physical accessibility, community integration, and meaningful self-direction for people with all types and degrees of disability.

From Kerith…

So, parents. What do you think? Anything surprising here?

Notice what’s not here. He didn’t mention therapy, IEPs, or equipment – things we parents focus so much of energy on in those early years. I’m sure he would say they were and are important. But, as the child ages, the focus really shifts – or at least from what he’s shared here, it should.

What can we learn?

Your child’s disability is part of their identity. However…

Focus on your child, not your child’s disabilities.

Encourage diverse and individual interests.

Have high expectations.

Encourage independence and independent choices.

Talk to your child about the tough stuff, especially sexuality.

Provide interactions and role models who have disabilities.

Make sure you have a good friend.

Respect people with disabilities.

Give your support to disability groups and public policies that truly include people with disabilities.

Finally…

Although we parents of special needs children have so much to think about and do for our little ones, be sure you’re looking ahead and preparing your child for the disabled adult they will eventually become.

More about Kerith Stull:

In 1995, Kerith was the married mother of a toddler working in marketing. Her life changed dramatically when her second daughter, Brielle, was born affected by CMV (cytomegalovirus). She quit her career and became a stay-at-home mother when Brielle was six months old to focus her time and attention to Brielle's needs. Brielle is now a highschooler and doing well despite CMV. She has CP (cerebral palsy), walks with a limp, and has an impaired right arm and hand. She needs assistance with basic care needs including dressing, bathing, and toileting. Brielle does not have any hearing loss (usually very common for CMV), but she cannot speak due to the CP. Instead, she uses sign language and occasionally uses a communication app on her iPod to communicate when I am not with her to interpret. She functions academically at about a fourth grade level for everything except math, which lags behind. Brielle participates in a work study program at school and loves her “jobs” at CVS and Walgreens. She  bowls in the winter with Special Olympics, plays baseball in the fall and spring on a Miracle League team, and plays soccer on a special needs team with TOPSoccer. She spends her free time dancing with teen idol bands on her iPod, doodling in a notebook, or watching teen shows or Scooby Doo. She has an infectious squeal and a smile that can light up a room.

“Brielle and Me" is a peek into their lives with their special needs daughter – the good, the bad, and the sometimes surprising. The stories Kerith shares here are motivated by a deeper passion — the pursuit of meaning from something that could be seen as so meaningless. Kerith's book about her journey of hope, determination, faith, and love was published in February of 2014.

What questions do YOU have for Kerith?