Showing posts with label Education. Show all posts
Showing posts with label Education. Show all posts

Wednesday, November 18, 2015

Return Of The "Pool Noodle?"

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

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

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

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

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

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Tuesday, October 13, 2015

Inspiration Porn: High School Gestures

Silhouette illustration of a young man and woman dancing at a formal dance
I am still working on a sort of master post on Inspiration Porn, but I want to take another detour to talk about a subset of this loosely defined phenomenon. I'll call it High School Gestures, referring to three practices that have become popular in American high schools and a familiar trope in "feel good" media:


2. Organizing and hosting "special" prom events, specifically for disabled students.

3. Allowing a disabled student to "run a play" with a sports team.

Three key factors make these practices a type of Inspiration Porn:

1. They are all intended to be “good deeds” for people assumed to be stigmatized and unable to make satisfying social lives for themselves.

2. Media coverage of these events almost always focuses on the kindness of the organizers, relatively little on the disabled individuals these events are supposed to benefit, and not at all on the stigmas and barriers disabled students face every day in their effort to participate in school social life.

3. The events are often further interpreted as encouraging signs that "the kids today" may not be going to Hell after all ... the premise being that on every other day it seems like they are, an unfair and insulting idea in itself.

Labeling these kinds of events Inspiration Porn obviously indicates that I have problems with them, and I do. They are usually well meaning, but contrived and, in a sense, fake. I worry that later in life, some of these disabled youth will look back on these “feel good” events and and cringe at how patronizing they were, and wonder how they allowed themselves to be treated as objects of pity and charity. No matter what the specifics, these events are almost always reported in the same sentimental way, so that even when a specific event is really sincere, it still comes off as weepy Inspiration Porn. The worst thing, in a way, is that these are usually “one off” gestures that benefit one especially loved disabled person, while most disabled kids are unaffected.

Let’s be clear. An unstated premise of these gestures is that “normal” high school social rituals are inherently exclusive and off-limits to most disabled students. That is the problem, and these flashy gestures don’t do much to change the situation. It’s like giving a box of extra-tasty chocolates, just once, to starving person, instead of what they need, which is a reliable diet of nutritious food.

In addition, a lot of disabled people themselves find these kinds of practices truly vile and offensive, in a very personal way. And I think it’s important to emphasize that this feeling is real, not intellectualized or theoretical, or deployed merely for rhetorical purposes. And no, it doesnt matter that the intentions are good. We feel it like a gut punch.

On the other hand, I have started thinking that the acts themselves aren’t always so terrible; it’s the way they are reported that makes us gag. In a couple of cases about prom court elections, it seemed like the students sincerely voted for people they genuinely liked, almost without reference to their disability. It's just that the media covered it like it was a charitable act. Still, one or two isolated examples just don’t go far enough when the majority of disabled students are entirely left out of extracurricular activities and social life.

Instead, I would prefer schools to discourage these types of grand, benevolent gestures, and instead take up the long-term and less immediately gratifying job of removing barriers to a full social life for all disabled students.

How? Here are some ideas:

1. Schools should support a wider variety of extracurricular activities, besides the prom and the the most popular sports programs. "Schools should support" means school district taxpayers should demand and agree to pay for more diverse, robust social options that appeal to all kinds of students, including those with disabilities.

2. Schools should create clubs and organizations that are associated with the top sports programs, but serve peripheral support functions and can accommodate non-athletic participants. It's unrealistic to think that chess club, theater companies, and community service groups are ever going to be as popular as football and basketball, so let's create and recognize some real support roles that disabled students ... and other non-athletic students … can play.

3. Make it absolutely clear that all students … including those who don't have dates and just want to go and have fun … are welcomed to attend all of the proms, formals, and other social events. The long term goal here might be to permanently de-emphasize the "coupling up" aspect. Also, it would help to downplay the most expensive aspects, like tuxes, gowns, and limos. Don't ban them, but don't glorify them.

4. Instead of charitably giving awards and honors to disabled people who would probably not qualify under ordinary circumstances, create a wider variety of awards and honors that are honest and real, and which disabled students (and others) can more frequently earn without anyone having to make a “special” effort.

One argument against these suggestions might be that they shortchange students on learning valuable lessons about kindness and generosity. For one thing, that's like saying that we need people to be in poverty so that everyone else can learn to be generous. I would also counter that there are much more important lessons to learn about respecting and including all kinds of people and normalizing those values, rather than treating ordinary decency as some kind special gift that privileged people occasionally bestow on those deemed “less fortunate.”

In short, a little less “Make-A-Wish” and a lot more commitment to deep integration and equality. That’s what we should be shooting for. It’s harder to accomplish, but the long term benefits are far greater than the fleeting results of one or two big, short-term gestures per year. And although wholesale culture change sounds like a near-impossible task, these specific steps in that direction are eminently achievable.

We have to insist on it, not just for our disabled students, but for all of them.

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Wednesday, July 29, 2015

Shared Abilities Article

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


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Monday, April 6, 2015

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 dont 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 its 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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Thursday, March 26, 2015

Newbie FAQs: Advice For Children And Youth With Disabilities

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

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

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

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

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

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

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

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

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


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Wednesday, March 25, 2015

Education, Segregation, Isolation

Stick figure illustration of person with graduation cap sitting on top of a stack of books
Mike Krings, KU News Service, The University of Kansas - February 10, 2015

Well, bravo. Seriously. Its rare to see such an unequivocal statement in favor of inclusion.

Im not knowledgeable enough to comment on the details of what these professors are proposing. I do want to note a few things:

- Its great to see full inclusion strongly endorsed without the usual caveats and reservations.

- It blew my mind a little seeing the Education of All Handicapped Children Act of 1975, (now called the Individuals with Disabilities Education Act or IDEA), described as a law to segregate kids with disabilities, as if that was its purpose. I always understood the law to have been intended to provide education to kids with disabilities that previously had no legal guarantee of it in any form. I think what they are saying here is that the law ended up increasing segregation by turning education of disabled kids into a speciality.

- Calling Special Education “a place rather than a system of supports is spot-on. That is what it has been for decades. Most schools it still treat Special Education that way. 

- Its a broken record in the disability activist community, but bears repeating … How can we still be talking about inclusion as if it’s a new idea we might, maybe be ready for, when it has been a core principle of federal Special Education law since at least the early 90’s? 

- Reading "Special Needs Parent" blogs, Im worried that segregation may be coming back into style among parents of kids with disabilities. It used to be the more apathetic or intimidated families that went along with keeping disabled kids in separate classrooms. Now we have a lot more parents choosing either homeschooling or private schools specializing in disabled kids. It seems like a rejection of public schools, and a vote of no-confidence for Special Education. Yet, the results tend to be just as segregated and isolating as Special Ed at its worst.

- Broadly speaking, I think public education in the U.S. is unfairly maligned. However, Special Education does seem to be a very special” subculture within public education, where there are plenty of great people entangled in an outdated, bureaucratized system that is defensive and resistant to change. Special Education is in reality what all of education sometimes appears to be.
 
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Tuesday, March 24, 2015

Advocacy Or Fundraising ... Demanding Or Asking?


Austin High School, Austin TX
(Via the Disability Visibility Project Facebook Page)

I thought about this story a lot yesterday ... not about the honored student-produced video, but rather what the video was about.

Why didn’t Archer Hadley, his parents, and his classmates petition the School Board to install automatic doors as a basic accessibility feature, to comply with the Americans with Disabilities Act?

Maybe they did. Maybe the fundraiser was a fall-back strategy after advocacy failed. Personally, I doubt advocacy was ever really considered. It seems like everyone involved ether consciously or unconsciously kept this whole matter squarely in the realm of a personal quest … inspiring, maybe educational, certainly not confrontational. It happens a lot.

Why do non-trivial numbers of smart, energetic disabled people like Archer choose to address systemic barriers with fundraising and “awareness” campaigns instead of advocacy? Sometimes they are deliberately diverted this way by people in power who would find an advocacy campaign embarrassing, awkward, and of course expensive. What interest me more are the cultural and emotional reasons. I can’t read Arthur’s mind, but I have some thoughts of my own about why things go this way so often:

- To some people, advocacy is energizing, but for others, it seems rude, ridiculous, or scary. For some people, fundraising and game-ish “events” for a cause are fun, familiar, and sociable, while serving a useful purpose. For others, these activities feel either like begging, or, conversely, like an excuse for well-off people to have a party. In other words, advocacy and fundraising come with cultural associations, and appeal in different ways to people with different personality types. I get the feeling that Archer comes from a culture that disapproves of public advocacy, while praising fundraising and awareness events.

- A lot of people can’t imagine solving a problem through legal or political avenues. Not just because they are intimidated, but also because changing “the system” seems impossible, and the efforts to do so feel futile. Getting your family, friends, and neighbors mobilized to raise a specific amount of money, on the other hand, is at least a lot simpler, and the results are more likely to be exactly what you wanted them to be, since you call the shots and there’s no need for negotiations or compromise. It’s why Bill Gates funds a charity to solve the worlds problems, instead of running for office. On a much smaller scale it may be why Archer saw a problem affecting himself personally, and chose a more “accessible”, person-to-person approach instead of trying to navigate a maze of bureaucracy, mostly likely having to settle for one only automatic door, or maybe reduced opening force on all the doors ... better maybe, but not best.

- I think a lot of teenagers with disabilities as significant as Archer's have a genuinely hard time fully believing deep inside that they have the “right” to full access and equal opportunity. I’m not suggesting their self-esteem is in the dumps … though for some it may be. I’m saying that a teen with so many very obvious physical impairments may well feel that being in everyone else’s debt and relying on kindness and generosity is just part of the deal. I felt that way when I was Archer's age. At the time I would have said it was just common sense, that someone “like me” couldn’t realistically expect everything to be open to me. Which is not to say that I didn’t want things to be better. Just that I couldn’t conceive of presenting the really big improvements as anything but humble requests.

How we choose to deal with the problems and barriers of disability says a lot about our culture, our personalities, and where we are in our journey with disability.

(Note: I originally have the young man's name as Arthur, which was a misread on my part.)

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Facebook

Monday, January 26, 2015

More Thoughts On Education

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

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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Saturday, January 24, 2015

Caught Between Sides

Michelle Diament, Disability Scoop - January 23, 2015

I am only superficially familiar with the basic outlines of current debates over Education. It seems like one side wants to make K-12 education a bit more rigorous, supposedly because some sort of slack has crept into the system. Another side worries that the “higher standards” people are mostly interested in lots and lots of standardized testing and in de-clawing teacher’s unions, not so much about actually educating kids better.

Kids are caught in the middle, and if anything it’s worse and more confusing for kids with disabilities. It seems like the “special education” debate is shifting a bit, in time with the larger conflict.

Special Education debates used to be all about self-contained, segregated placement vs. “mainstreaming”. Sadly, these are still active issues, fought underneath the surface with all sorts of euphemisms. Now, though things have shifted a bit so that there are two other camps, too. One says that by and large, disabled kids are much smarter and more capable than schools and even parents realize. More disabled kids should be taking tests, passing regular classes, and getting real diplomas.

The other says that disabled kids, of all kids, should be spared the humiliation of being pushed through the test-taking wringer like everyone else. It’s easy for ivory-tower reformers to simply assert that 90% of disabled kids can get regular diplomas … can that really really true? Or is it just something they say to keep everyone on their toes, or because it fits with their preconception that “today’s education” stinks?

Whatever you think about tests specifically, isn’t it possible that most disabled kids can achieve more than is typically asked of them in school? Shouldn’t we err on the side of competence? How many generations of kids have we let slip though without gaining skills they might really have gained, if we’d pushed them a bit harder and been a bit more creative? At the same time, will "higher standards" just mean shoving disabled kids willy-nilly through the same system, without disability-specific supports or accommodations?

I honestly don’t know the answers to these questions.


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Thursday, December 18, 2014

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

Photo of a stack of newspapers with a big headline NEWS on top.
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.

Thursday, December 11, 2014

Class Photo Time Again!

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.

Monday, October 27, 2014

Bullying

Joy Resmovits, Huffington Post - October 22, 2014

I have often wondered why I was never bullied in school.

Conventional wisdom would suggest that I should have been picked on mercilessly. I was very short and weak. I looked weird. I wore glasses. I was brainy and nerdy. I went to high school in a semi-rural, semi-suburban community in the early 1980s … decades before diversity and tolerance became prominent concerns in public schools.

"1000" in number shaped candles, litYet, I can’t recall a single incident of bullying, based on my disabilities or anything else. Not everyone liked me, but that’s normal. To my knowledge, I was never picked on because of my differences, and my relations with classmates never caused more than occasional anxiety or stress. It’s possible that people talked about me in bullying ways behind my back. But if I never became aware of it, then who cares?

If I escaped bullying because of things that I did right, I have no idea what they were.

If it was because of things my school did right, I don’t know what they were or whether their practices would be applicable today.

Was it because my disabilities were only physical, not mental or cognitive?

Were kids in the ‘80s nicer than they are today?

Was I just lucky to attend an especially harmonious, well-adjusted high school?

I know that to people who have directly or indirectly experienced bullying, this is an enviable mystery. But it feels like a mystery well worth trying to solve, since stopping or curtailing bullying seems to be such a puzzle. Most articles on the subject focus on simply recognizing bullying and deciding to fight it. Few offer any hints about how to do it … for schools, parents, or even disabled students themselves.

P.S.: This is the 1,000th post at Disability Thinking.

Saturday, September 20, 2014

In The Driver's Seat


Charisse Hogan, Shared Abilities - September 20, 2014

I wish Charisse’s video had been available when I was young.

I learned to drive during my Senior Year in college, which isn’t really all that late, I know. At the time, though, it felt like I was finally getting around to trying one of the few things I had put off in my life specifically and solely because of my disability. It was scary and alluring at the same time. And the first, most important obstacle actually to experience the physical sensations of driving. After literally only about 10 minutes of tentative driving in an empty parking lot, with an instructor and a driver’s seat piled high with with text books and pillows, I knew that driving was going to be possible. In fact, I quickly got the feeling that it wasn’t even going to be that difficult. Before that, I couldn’t imagine doing it.

Maybe that’s a disability thing. We have a little more trouble imaging in doing certain things other people do, and there are both physical and psychological hurdles to even trying.

I was also very fortunate not to be tied in with a formal training program of any kind. I hired a local high school driving instructor who also had a talent for adaptation. He worked up the measurements for changes to the driver's seat and pedal blocks, which a local car customization shop implemented. Of course, I didn’t have any neurological issues to deal with … for me it was mostly about my height. I often wonder how things would have gone for me if I had needed adjustments more completed than a lifted and tilted seat.

Anyway, given the scheduling difficulties she mentions, it’s great that Charisse started the process early. If she gets her license this year, she’ll have gotten it a year earlier than the age I got mine.

Wednesday, September 17, 2014

Meanings Of "Special"

Arianna Prothero, Education Week - September 16, 2014

This is one of the best articles without a definite axe to grind that I have read about inclusion vs. self-contained special education.

I have a feeling that one of the factors influencing why some parents of disabled kids move away from inclusion, towards "special", disability-focused charter schools is that people with different backgrounds and life experiences have different ideas of what "special" means.

To some, "Special" is:

Notable, remarkable, tailored, individualized, enriched, prestigious.

To others, "Special" means:

Stigmatized, ostracized, relegated, segregated, sheltered, excluded.

Some peoples’ experiences of “special” are positive, suggesting consumer goods and services that are individually crafted, made to order, as opposed to manufactured and standardized.

Others understand “special” more in terms of unwanted attention, deprivation, even punishment.

Sometimes, the word “special” drips with irony and smarm. It's a euphemism. It's supposed to be a good thing, but isn’t always meant that way.

Other times, it’s more straightforward. Sometimes "special" really means "better" or "exceptional".

For some of us, the idea of "special" schools will always have a sinister connotation. For others, "special" schools suggest students who are cherished and given generous attention, with the most advanced and expert educational techniques.

The flip side, of course, is that some view "mainstream" public schools as the most promising way to ensure inclusion and capability in adult life, while others see them as rigid, bureaucratic institutions where anyone different is neglected and uniqueness is ground down into bland conformity. Or worse, they are ultra-competitive and socially ruthless, while "special" schools are safe havens where especially sensitive, atypical students have a better chance to thrive.

All of these images and feelings are in active play, related to but also separate from verifiable, quantifiable facts about how education of kids with disabilities works, what it does and doesn’t do for them, and how it succeeds and fails to meet parents’ needs and expectations.

I find whole topic complicated and upsetting.

Tuesday, August 19, 2014

Video Of The Day: Inclusion


It is amazing that the presenter, Dan Habib, makes so many of the most fundamental points of disability rights in one, smooth, engaging, and personal presentation. He makes such a great argument for inclusion … and the crystal clear case for downtown accessibility was such an unexpected surprise.

The only thing missing, I think, is tackling some of the actual arguments that keep segregated Special Ed alive. For example:
  • My child isn’t as intelligent or naturally charming as Samuel, he’d never keep up or make friends in a regular classroom.
  • My daughter is included, and she’s teased every day and the teachers couldn’t care less. She was happier in a self-contained classroom.
  • One size doesn’t fit all. Inclusion may be statistically better, but it isn’t better for every single disabled student.
I think there are good answers to these kinds of arguments, but I don’t see them being engaged as much as they should be.

Still, this TED Talk is a great start.

Via Olliebean.

Saturday, August 16, 2014

Back To School Advice for Disabled Students

Chalk board with words Back To School!
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?

Friday, May 30, 2014

Best Article On Disability By A Parent

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.

Saturday, May 10, 2014

"Parenthood" ... Too Many Feelings

Photo of an old-style television set with wheelchair icon on the screen
Todd VanDerWerff, AV Club - March 21, 2014


I have finally finished watching the recently concluded 5th season of the TV show “Parenthood”. It’s pretty good television ... not the show's best run, but better in the end than I thought when the season started last Fall. The show is high-grade, mainstream comedy-drama, with a large ensemble of good actors, and a few great ones.

What draws me back to “Parenthood” though … other than wanting to beat up any dude who makes Amber cry … is its long-form exploration of Asberger’s Syndrome. Off and on throughout the series, we have been given deep, fairly nuanced insight into how teenager Max Braverman's family responds to his Asberger’s, and also into Max’s own point of view as a real, breathing, three-dimensional person with Asberger’s. This season, show runner Jason Katims took it a step further and introduced Hank, an adult professional photographer who takes to Max, and Max to him, and partly through knowing Max comes to realize that he probably has Asberger’s, too.

One of the best things about Season 5 was mapping the complex connections between Max and Hank's shared experiences of Asberger's. Hank has a natural instinct for how to negotiate Max's one-track mind and stubbornness. In some ways, he's better at dealing with Max than Max's parents are. Max, in turn, helps Hank cut through some of the BS in his own life, because Max always says exactly what he thinks, and he thinks quite logically ... which produces great moments of clarity for Hank, especially when the subject is his clumsy love life. Of course, Hank also learns more passively from Max about what Asberger's is, and watching the similarities and differences between Max's habits and his own helps him come to grips with Asberger's ... in my opinion far more effectively than the rather bland advice handed out by the show's supposed Asberger's expert character, Dr. Pelican.

Max's own story came to a dramatic head later in the season, when in the wake of a school trip in which he was ridiculed and called a "freak" by classmates, he had a "meltdown" and for the second time in the whole series, he and his parents spoke openly and plainly about the fact that Max has Asberger's. Todd VanDerWerff of The AV Club writes about the scene in his review of the episode:
“… Plus, Parenthood is capable of scenes like the one on the car ride back from Sacramento in tonight’s episode, in which via bits and pieces, Max’s story of why he threw a tantrum in the middle of the class trip to Sutter’s Mill came out. One of the other kids started to make fun of him and told him he was a freak, and everybody else laughed at him. Instead of brushing it off, as Mr. Knight says he usually does, he had the very understandable reaction of, y’know, not wanting everybody to laugh at him and freaked out. But what rang true here wasn’t just Max’s reaction to the kids making fun of him; it was Adam and Kristina’s powerlessness to do anything about it. At one point, Adam calls the kid who made fun of Max an “asshole,” and he’s right about that, but he’s also talking about a 14-year-old boy. If Adam actually tried to do anything about it, he’d get thrown in jail."
As VanDerWerff notes a bit later, this scene effectively demonstrates that Max's Asberger's behaviors aren't so much symptoms or disorders as they are a different language. Far from nonsensical, even Max's "meltdowns" have a logic to them. His odd affect, obsessions, and sudden spurts of emotion all have reasons, even if Adam and Kristina … and certainly his teachers and classmates … still have a hard time reading them, or even acknowledging them.
"This is where the show is on much firmer ground handling Max’s Asperger’s: When he gets into a situation he doesn’t know how to handle, he can sometimes shut down. That’s happened less and less as the show has gone on (as Adam says to Mr. Knight), but where other kids might throw a punch or come up with some sort of forced, witty retort or even just retreat entirely and try to avoid the bully, Max is just as likely to unleash his emotions seemingly at random, in a way that’s scary to those who aren’t used to it, like Mr. Knight. Jason Katims has based at least some of Max on his own son, and while fiction and reality will necessarily diverge, it’s in scenes like this one or the scenes featuring Max from “Let’s Be Mad Together” where the show does some of its finest work. So long as these stories are about Adam, Kristina, and Max all working together to navigate daily life, as opposed to, like, Adam and Kristina starting a charter school, this is still one of the more effective portrayals of parenting a child on the spectrum on TV (and maybe the only one).”
"Parenthood" DVD cover
I agree. In fact, I even found myself accepting the whole Charter School idea, which is testament to the show’s persuasiveness because I usually object to the idea of “let’s leave and start our own school” response to public school’s ineptness with disabled students.

However, this otherwise perceptive Onion AV Club review left out one important detail about the emotionally charged driving home scene. I am astounded that VanDerWerff doesn't so much as mention how the scene ends ... with an incident I found extremely moving but also profoundly upsetting. Bear with me, because I need to describe this step by step.

As Max, at length, tells Adam and Kristina about the kids making fun of him on the school trip, he becomes more and more upset, first asking, “Why do all the other kids hate me? … Is it because I’m weird?”

Kristina’s initial explanation is pretty good … great actually:

“Honey, you’re not weird, okay? I just think sometimes, I don’t know, kids don’t understand your Asberger’s and they misinterpret it as being weird or whatever”.

That’s a correct and perceptive explanation. Of course, we also get the other side of the coin in Adam’s response, which is that the kids who bullied Max are “assholes”, which is satisfying in another way. When Max tells them that one of the kids peed in his canteen, Adam says, without a moment’s pause, “I’ll kill him,” again an appropriate response, at least in the context of a heartbreaking talk with his suffering, humiliated son.

Max's emotions are obviously spinning and spiraling now. His oddly logical mind has finally put the pieces together, and come to realize that despite all the feel-good rhetoric and theory, Asberger’s has a definite downside that he can’t will away. Adam and Kristina sit in the front seats of their minivan, poleaxed, suffering with Max’s suffering, but unable at first to respond.

Then all at once, Krisina undoes her seatbelt and climbs into the back seat of the minivan. This act beautifully and uniquely demonstrates her desperation, because visually, we are used to seeing this kind of move by irresponsible teen characters, not by uber-Mom adults like Kristina Braverman. Now seated next to Max, she wraps him in a hug … the only response she has, and is determined to give. For a second, it is very moving.

The problem is Max is that Autistic, and he has trouble with being touched and handled by other people. When he’s upset to begin with, touching and hugging doesn’t comfort him, it agitates him more. Max immediately struggles against his mother’s hug, and clearly, urgently says, “I don’t like being hugged!” To which Kristina replies, just as clearly, “I don’t care right now.”

Let's let that sink in for a moment.

When an Autistic person says, “I don’t like being touched, don’t touch me!”, are they actually saying, “Please hug me to show that you love me?” or, “I really want to be hugged but I don’t know how to say it so don’t listen to my words?” That’s a nice thought, and would be convenient for parents who long to hug their children, but somehow I doubt it.

Since Autism often involves significant differences from the typical way people neurologically process touch, connection, and personal space, is Max unfeelingly rejecting his mother’s love, or is he actually trying to defend his personal boundaries? Is Kristina invading his personal space … his bodily integrity … and saying that, at long last, she “doesn’t care” because dammit, she’s so very sad right now?

I wonder if this is meant to be some kind of response to Max’s telling Kristina earlier in the episode that he doesn’t want her to chaperone the school trip. The weird thing is, when he said that, Kristina looked genuinely mystified and asked why. Seriously? Kristina doesn’t have a wild guess as to why a teenaged boy doesn’t want his Mom chaperoning a school trip? If he was a “normal” teen, she wouldn’t have to ask. Kristina loves Max totally, but even she has him in some “other” category apart from “son”, “male”, and “teenager”.

But this is consistent with how Adam and Kristina have been portrayed all along on “Parenthood”. In many ways, they are ideal parents of a kid on the spectrum. They are smart, or at least well read, and they have the patience and resources to give Max the best possible chance to bloom and maybe become a relative success like Hank, Yet, Adam and Kristina's rather pronounced need for approval from their kids puts them in a rather difficult spot, since 99% of the time, Max can't give them the kind of feedback they desperately crave.

All of this just makes the hugging scene even more disturbing to me. I find I can’t just avoid asking the question … Did we just see Max being violated by his Mother? There was nothing at all sexual about her hug, but Max clearly and emphatically said he didn’t want to be hugged right then, and right then Kristina said, “I don’t care”, and kept on hugging him, as if her need and her physical strength could overcome her understanding of Max’s unhappiness. Look, I’m all for the idea that sometimes, teenagers should put their preferences aside and show some love to their parents, even when they don’t feel like it, but part of Max’s condition is a sensitivity to touch, and, as the saying goes, no means no.

"I don't like being hugged!"

"I don't care."

Let me be clear. I didn't go digging for this. It hit me on the head like a 2 x 4.

And yet, watching the scene again, Max does calm down. He’s crying, but in the end I don’t think it’s because he’s being held. He’s crying because although he’s known for several years now that he has Asberger’s, he has just realized that in a way, he is weird, and “even the nice people” think it’s okay and natural to make fun of weird people. Asberger’s also means Max is specifically ill-equipped to fathom the social stigma or effectively defuse it. Maybe Kristina’s timing and gestures here were perfect for the moment.

Nevertheless, I worry about the message this might send. Don’t listen to your autistic kid … or other kind of disabled kid … because they don’t understand their own feelings. Just ignore what they say, and your love will make everything okay! Yeah, on TV maybe, but in real life, disabled kids are people, not obstacles, and not puzzles.

Maybe it’s just me, but this must be a good show if a 3 minute scene could generate so many strong, utterly conflicting feelings.

If you are a parent of a child with disabilities, or with special needs if you prefer, and you haven’t seen “Parenthood”, get a Netflix or Hulu account binge watch it. And take notes.