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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Another Case Of Neglect ... What's The Story?

Police ID Mom of Quadriplegic Son With Cerebral Palsy Left in Philly Park

Alison Burdo and David Chang, 4 NBC Washington - April 12, 2015

Confronting another attempted murder of disabled man

Elena Rose Levy, Angelic Eve: Where Snakes Are Not Scary, Neither Am I - April 12, 2015

What to do with another disability neglect story?

Let’s start by noting that the way this story is covered, “this young man” has no name, and no thoughts or information about what has happened to him. I understand that his CP is on the “severe” end of the scale. He’s apparently unable to speak, though with CP, people could easily be mistaken about his ability to communicate. As for his name, it’s possible his aunts have asked for the moment that it not be released, as a way to protect his anonymity. But in this case, it seems like a weird choice, since his mother’s name is now public knowledge.

Let’s also note how “suffers” is used in the story, not to describe what happened to “him”, but as a simple, habitual modifier to Cerebral Palsy … as in “suffers from Cerebral Palsy”. It seems very likely that “he” has suffered a lot, but more from his mother’s neglect and bad choices, not necessarily from his CP.

All that is technically a meta-conversation about journalism, and not precisely what the big story is here. But as I have said before, these journalistic habits subtly reinforce the kind of thinking about disabilities that contribute to these kinds of terrible incidents. When you assume people who have certain kinds and combinations of disabilities as little more than inert teddy bears or giant Tamagochis, it’s actually not that long a walk from, “How dare you neglect him?” to, “What’s the point anyway?” Put another way, whether motivated by kindness and pity, or by selfishness and ignorance, removing a disabled person’s agency and personhood is harmful, sometimes deadly.

To me, this story is also another in a long, depressing line of stories about the all-or-nothing mindset many families have about “caring for” disabled “children”. They think they only have two socially accepted choices. They can either devote the rest of their lives to caring for the “child”, or they can “put” the child in an institution. They see no middle ground, and certainly don’t seem to ever imagine their son or daughter having some agency for themselves, and living at least somewhat independently with their own support services, and not dependent on family.

Finding both institutionalization and life tied to an adult child unacceptable, some of these parents get weird and self-deluded, and abandon them, or kill them, telling themselves that it’s a mercy for the disabled person, or leaving a blanket and a Bible, equally useless and pathetic gestures. Of course, it’s also possible that in some cases, perhaps this one, the parent involved is just massively selfish or stunningly ignorant. We are angry at them for shirking their responsibility, but then we think maybe it wouldn’t have been any better for them to keep providing what was probably terrible care in the first place.

What pricked my emotions more than the news story itself was Elena Rose Levy’s blog post, where she notes that being physically abandoned is a common nightmare of so many young disabled kids and teens. I don’t remember having that specific fear. I do remember often feeling physically vulnerable and dependent in a way most of my peers did not. There was a long stretch of time when I think I saw my world as narrower, my life choices limited, because of a vague feeling that I would always need “care”, which meant that I had to be careful to be a certain way in order to secure that care.

Which brings me back to the issue of this nameless 21 year old “child’s" point of view. I kind of appreciated the blunt comments from the neighbor lady in the news story, but I want to know what the the disabled guy actually thinks. I guarantee, he thinks something worth hearing about.

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A Non-Soppy Disability Love Story

Walk down the aisle another amazing step on AuSable Forks woman's journey

Ben Rowe, Press-Republican - February 14, 2015

Here’s a rare sentimental disability story that I actually enjoyed reading.

I’ve written before about the mixed messages sent by stories of paralyzed people going to great lengths to “walk” down the aisle at their weddings. What bothers me most about them isn’t that some people want to do it. The real problem is that disabled people who choose instead to wheel down the aisle ... like they wheel everywhere else in their lives ... don’t get heartwarming newspaper stories written about them. Meanwhile, the people who do go to Herculean efforts to walk a few steps are portrayed as heroes, while their voices, and the stories of their everyday lives tend to get short shrift.

That’s partly why I liked this story about Michaela, a young woman who lives in my neck of the woods, who I’ve met and know a little bit. It helps that I know her, of course, and I’m pretty sure she doesn’t spend 24-7 pining after a cure. At any rate, she reserves at least some of her time and energy for actual living, working, and of course loving. The story starts with her walk, but quickly becomes about Michaela and Kyle. It doesn't ignore her disability, or minimize it, but puts it into context. The story is really about more than her walk down the aisle. It is about Michaela and Kyle’s relationship, affected and given unique shape by her disability, but in other ways quite typical.

The story is heartwarming without for a moment being maudlin. We hear more from Michaela and Kyle than we do from parents, therapists, or the journalist. These are rare qualities in human interest journalism focused on disabled people. It’s even more admirable from a small-town newspaper, when so-called giants of journalism regularly give us much worse.

Above all, I’m left with an important reminder, that these stories of “recovery” are also part of disability culture, in that they are important to many disabled people. The issue we sometimes have about these stories is how they are reported, and whose voices are and aren’t heard. The stories themselves are fine, and deserve to be told.

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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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For "Special Needs" Parents

Before watching this scene from the first season of “Game Of Thrones”, be warned … violence and blood ahead.

While thinking about my two Disability.TV conversations with Alice Wong, on disabled characters in "Game Of Thrones," I remembered a scene we forgot to talk about.

Bran Stark, who has recently been paralyzed by being pushed out of a tall tower, is the target of an assassin sneaking into his room. His mother, Catelyn Stark fights the man off just long enough for Bran’s pet direwolf to leap to his defense in spectacular fashion.

The scene isn’t about disability, but the emotions in it make me think of all the parents out there with disabled kids. I sometimes have issues with how some parents talk about disability issues, but I never doubt for a moment their dedication and fierceness … not unlike Catelyn, and the direwolf.

China Protests And Disability Policy

I read an article today at Vox.com on why the Chinese government suppresses movements for democracy. The article asserts that they view China as fundamentally weak, threatened, and unstable. This leads them to value order above all and fear that even small increases in individual freedom will lead to society-wide chaos. This is based on a real history of devastating chaos and a rapid fall from unquestioned superiority to being carved up by outside powers.

Meanwhile, we in the United States tend to see China as a strong, vibrant, up-and-coming country, held back only by it’s own government’s outdated, repressive policies.

I think there is a lesson here for understanding people who oppose disability service reforms like phasing out sheltered workshops.

Many families' experiences of disability are suffused with fear, disappointment, betrayal, neglect, and a profound sense of the vulnerability of their disabled loved ones. Many disabled people also share this view about themselves.

Others in the disability community look at the overall situation and see it quite differently. They see that developmentally disabled people are demonstrably capable of more than they have historically been given credit for. Likewise, they see a society that, for all its faults and leftover prejudices, has largely gotten used to developmentally disabled people being visible and active in “mainstream" society.

Some view disability from a position of weakness and vulnerability. Others from a place of strength and possibility. Nether side is completely right or wrong. Both have ample reasons to justify their points of view, if not their preferred policies. It all comes down to how one chooses to look ahead … with pessimism or optimism.

4 More Tips For Parents

TALKING TO KIDS ABOUT DISABILITY (AND VOLDEMORT)

Mary Evelyn, What Do You Do Dear? - September 5, 2014

This is a terrific article with great advice for parents of disabled kids, and kids with disabilities themselves. Slack-jawed stares and uncomfortable questions are often the first and most frequent encounter disabled people have with the social stigma of disability. So, I would like to add four more suggestions for parents on how to help their children handle disability-related pointing, staring, and asking.

1. Age makes a difference ... the age of your child, and of the person doing the pointing, staring, or asking. If you child is older than the person asking the questions … if your child is a teen and the other kid is 5 years old … it's a good opportunity to help your disabled child take on age-appropriate responsibilities. Teach them that as the older child, they should be a little kinder and more forgiving to the younger child than they might want to be. Help them recognize situations where they can help make someone more comfortable with and respectful about disability.

2. Help your child recognize situations where frank disability questions are okay. For example: doctor’s appointments, certain educational settings (though not necessarily all of them), and dealing with police, firefighters, and EMTs.

3. Empower your child to establish appropriate personal boundaries. Teach them effective, constructive ways to respond when people cross those boundaries. Let your disabled child know they have a right to be treated respectfully, and that they don't have to put up with everything from everybody, even from adults, just because they have disabilities and need help and supports that most other people don’t. It’s good to be appropriately grateful. It’s dangerous to feel beholden.

4. Help your disabled child develop effective and efficient ways to explain their disabilities to others. Having a brief, straightforward answer to the most “frequently asked questions” can be practically helpful, and give one added confidence.

Recommended: "Our Birth Story"

One of the gulfs between disabled people born with their disabilities, and parents of kids with disabilities, is how we think about the birth itself and that first discovery of disability. While all of us with disabilities can understand, intellectually, that it had to be one of life’s worst moments for our parents, we don’t want to dwell on that, because somehow that implies that we are one of the worst things to happen to our parents. We know that's not true either, but that can be hard to remember, given how many parents talk about it.

Meanwhile, special needs parents crave some recognition and understanding about what they went through … a connection and empathy that might be impossible for other parents to give. Even we, their children, can’t fully connect, because we have our own complicated issues with “that day” in the hospital.

All of which is just an overlong introduction to an extraordinary podcast episode I just listened to. It is called “Our Birth Story”, and it is the latest installment of Sawbones: A Marital Tour Of Misguided Medicine.

Sawbones is hosted by Justin and Sydnee McElroy, husband and wife. Justin is a podcaster and comedian, and Sydnee is a physician. Together, they take a humorous look at some of the bizarre twists and turns of medicine throughout history. Lately, several of their shows have been related to reproduction and birth, because Sydnee was pregnant with their first child. This episode is a departure because it is about their actual birth experience, and it is only funny in the sense that these two can’t help being funny … otherwise it is an amazingly vivid description of what happens to parents when things don't go according to plan in childbirth.

Their little girl Charlie is fine, so their experience isn’t a direct parallel to disability. However, I really felt that regardless of the ultimate outcome, Justin and Sydnee had a lot to say that I’m sure parents of kids with disabilities can relate to, especially the “white knuckle terror” of knowing something is wrong and being powerless to do anything about it … and not even being told what’s happening. At the same time, Justin and Sydnee are smart and level-headed people, so they are able to view their experiences with at least some objectivity, which makes the podcast bearable and informative.

Listening in my car, I though a lot about my parents and their "that day" ... including my father, who was a Pediatrician.

I would be especially interested in what any special needs parents think of the podcast.

Back To School Advice for Disabled Students

It’s almost back to school time, so I think now would be a great time for me to offer some unsolicited words of wisdom and advice to students with disabilities. Trust me, I know what I’m talking about. I may be 47 years old and I haven’t been a student for over 20 years, but I am disabled, and have been all my life. Besides, I really only feel about 17, so the “youths” will definitely want to listen to me, right?

Okay, here we go.

- One in awhile, think seriously about what you are doing in school. I’m not talking about taking your assignments, tests, or homework seriously. I’m talking about taking time out to consider what you are going to do with your life when school is finished. What do you want to do? What can you picture yourself doing? Is school sending you in that direction? Do you have a serious say in how your education is planned out? Or, is it just your parents, counselors, and teachers who decide what’s happening?

- Find and make friends with other students with disabilities. Make other friends, too, but other disabled friends can play a different, important role in your life. Students with other things in common hang out together in school, and some even advocate for each other in an organized way. Why not disabled students?

- Don’t lock yourself in your room until Spring, but at the same time, don’t feel pressured to socialize the way others think you should. You should feel totally free and welcomed to go to school events and parties, or not, if you don’t want to. There is no “correct” or “normal” way to “do” social life.

- Don’t try to reduce the stigma of your disability by calling it something different and making fine distinctions between “your” type of disability and “those other peoples” disabilities. "I’m differently abled not disabled." "I’m only physically disabled, there’s nothing wrong with my brain!" "My disabilities are actually very mild, so I don’t need any help." This kind of thinking is problematic, a waste of energy, and it doesn’t work.

- It’s understandable sometimes to hate your disability. Just remember that when you hate your disability … your body, or your mind … in a way you are just hating yourself. Don’t do that.

- Learn to tell the difference between the pain of your disability, and pain caused by how other people treat you because of your disability. They are different things. They have different sources, and different remedies.

- If you are going to work on reducing your disability … like walking more smoothly or speaking more clearly ... do it because you feel it will make your life easier, not so you will “fit in” better with everyone else.

- If the other students don’t know much about your disability, consider explaining it to them. People can be meaner and less sensitive to disabilities when they seem like secrets. You don’t owe anyone an explanation, but removing some of the mystery about your disability can help people get to know you better.

Finally ...

- Make the most of your years in school. Not because education is so important, though it can be. Make the most of school because it is the last time when your well-being and handling your disabilities will be other peoples’ responsibility. This is the best time to explore, try things out, experience both failure and success. Don’t just count the days and try to get school over with … use the time to the fullest.

So now I ask others with disabilities … What advice would you give to disabled students heading back to school?

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?

=====

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.

I Need To Talk About Tywin and Tyrion ...

I’ll try to avoid spoilers, but I feel the need work out some end-of-season “Game Of Thrones” thoughts.

Maybe I’m reading too much of my own thinking into it, but I have never really been convinced that Tywin Lannister hates his “dwarf” son Tyrion as thoroughly as Tyrion believes. It’s clear that Tyrion believes that his father despises him because of his physical abnormality. At least once Tywin admitted that he wanted to drown the Tyrion when he was an infant. He never denied any of the negative feelings about Tyrion attributed to him by others.

On the other hand, I don’t remember Tywin ever saying, affirmatively, that he hates Tyrion because he is a “dwarf.” Most often, he says what a disappointment he is because of his drinking, whoring, and irreverent, cavalier attitude towards everything, especially “the family”. Also, like Tyrion’s sister Cersi, Tywin supposedly also holds Tyrion responsible for his wife’s death, which occurred while giving birth to Tyrion. These would all be pretty weak reasons to reject a child anyway, especially since so much of Tyrion’s “attitude” is directly related to feeling he’s an outcast. But while the show seems to want us to understand that the conflict between Tyrion and his father is all about Tywin’s rejection, and that the rejection is all about Tyrion’s physical disability, what’s on the screen seems more ambiguous to me.

I think Tywin’s feelings about Tyrion are far more mixed and complex than Tyrion knows. I wouldn’t go so far as to say that Tywin hides a more progressive attitude underneath his patriarchal bluff and bluster. I would only point out that when Tyrion actually demonstrated competence and intelligence, Tywin went with it, and relied on him as a pivotal agent in the Lannister family’s plans. Despite this season’s stunning conclusion, I am left still wondering whether Tywin was telling the truth … that he never intended Tyrion to be executed, but rather was concealing plans within plans … much like everyone else in the “Game Of Thrones” universe. I’m not saying there was anything like conventional fatherly love there, but I think there must have been some kind of respect … maybe appreciation of potential.

If that’s even half true, that would suggest that Tyrion may have overestimated the amount of stigma applied to him, at least by his family. Cersi is pretty clear that she’d like to see him dead, but for her it really does seem to be misplaced anger about the loss of her mother. Jaime actually seems to like, respect, and love Tyrion. And the little kids of the Lannister family seem to respect and enjoy their funny Uncle Tyrion … the detestable Joffrey very much excepted. It can’t be easy being a “dwarf” in a medieval society, but Tyrion brings far more of his own messed up ideas to the table than he realizes.

Maybe it’s wishful thinking. Maybe it’s because Charles Dance brought more to the character than George R. R. Martin himself. I wonder if the true nature of Tywin’s feelings about his son Tyrion will ever be clear.

Then again, why should it be any clearer than these relationships are for real disabled people and their families? There's how our parents feel about us, and then there's how we assume our parents feel about us. It's complicated. All I can say for sure is that crossbows and death sentences don't tend to help clarify things.

Note: I follow “Game Of Thrones” the TV show, not the books, so if the relationships are somehow clearer in the books, I don’t really care. The show IS “Game Of Thrones” to me.

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

Best Article On Disability By A Parent

For Hire: Dedicated Young Man With Down Syndrome ... A Father Reflects On His Son’s Search For Employment

Michael Bérubé, Al Jazeera America - May 25, 2014

(Via the Autistic Self Advocacy Network Tumblr blog).

This is the best first-person article on disability by a parent of a disabled child I have ever read. It is very personal and anecdotal, but also connects one young man’s experiences with larger policy issues. Mr. Bérubé keeps the article focused on his son, Jamie, while also expressing how he, Jamie's father feels.

The picture he paints isn’t entirely gloomy. Age 21 isn’t quite the “cliff” it is sometimes said to be for disabled kids. There are systems in place with decent and improving philosophies behind them. Yet, so many disabilities … especially it seems intellectual disabilities … seem still to still baffle us, probably unnecessarily.

This is personal journalism at its best.