Monday, 30 July 2012

My Brain AVM: Gait Assessment Results - Time to "Brace" Myself

So, my right foot (the foot not affected by stroke) has been sore for quite some time. It took a while, but it all led up to me having a gait assessment, or observation and analysis of how I walk.

I'm sure that I had these done informally all the time in physiotherapy. But I never heard them called "gait assessment" that I can remember and it's been probably a decade since I've had one. I probably should have been referred to the woman who does gait assessment, who works right out of my doctor's office, a long time ago.


I noticed the pain in my foot a few weeks after I started to use the treadmill in my apartment building. It was just a little bit of pain at first so, undaunted, I pressed on with my brisk morning walk. I liked the treadmill because with its support, I could walk quite a bit faster than I could normally. I pushed myself, but I kept it in check as well.

When it got too painful to walk in the shoes I was using at the time, I bought some sneakers and started using those. It did no good. The pain got worse, and I eventually stopped using the treadmill. I was starting to notice the pain when I was just walking around town doing errands. Soon that became terribly painful. Even walking around my apartment was painful. I finally went to the doctor.

"Stay Off It"

My regular doctor was on vacation. The doctor that I arranged to have my foot x-rayed, to check for microfractures. In the meantime, I followed her advice to stay off it, which wasn't difficult. It's been hot as blazes in Ontario, and when I've gone into town I've taken taxis anyway (I'd generally walk in the summer).

The x-ray showed nothing, so when my regular doctor returned she arranged for a bone scan. She also referred me for the gait assessment.

Gait Assessment Gives the Answer, Most Likely

I was surprised by what Jocelyn's gait assessment and examination of my weak foot and leg told her.
I have something called a "foot-drop" in my left leg, caused by the stroke. It has to do with how muscle weakness makes it difficult to lift the front of the foot. I'm aware of it most of the time. However, when I'm tired, I sometimes catch my big toe as I'm walking because I'm not lifting my foot high enough, and I trip. My left shoes are scuffed at the toes beyond all repair.

She showed me that the calf muscle in my weakened leg has become severely contracted, to the point where, when my leg is stretched out in front of me, she can't pull my foot back so that it's at 90 degrees with my leg.

She explained that my right foot compensates for the foot-drop by pronating (rolling in) as I walk. She thinks that when I put all the sudden pressure of the treadmill workouts on it, I overloaded it.
She showed me how to stretch both my calf muscles and told me that I will have to do it several times a day. When my calf will stretch to allow my foot to sit where she wants it, she wants to brace it.


She showed me the brace. It's not huge and clunky. It slides onto my ankle and foot under my pants, shoes fit over it, and no one should know it's there. But I still don't want it.

However, the gait assessment showed that if I keep walking kind of skewed the way I do, I *will* continue to have problems.

Time to suck it up, I guess, and be thankful that:
  • We can catch these issues early, through things like gait assessment
  • We have the technology to keep gait issues from causing real problems

Happy Monday!

Blog post from another stroke survivor talking about foot-drop, with picture of brace:

Friday, 27 July 2012

Happy Belated Birthday to the Americans with Disabilities Act!

I couldn't get to the blog yesterday to write about this when the official celebrations were going on. However, I also didn't feel that I could let it go by unnoted here that yesterday that Americans with Disabilities Act turned 22.  And I'm a little hard on the United States in this blog sometimes - let's give it some credit where it's due. The fact that the US has had  such comprehensive  and constantly evolving federal legislation in place to protect the rights and freedoms of people with disabilities is a totally awesome for twenty years is awesome. Go America!

Learning about the Americans with Disabilities Act

I didn't know much about the Americans with Disabilities Actuntil I started writing this blog. For someone who's involved with disability activism, I still know appalling little about its history. I took a bit of time this morning to go over that history, with the help of this site out of Georgetown Law School: Admittedly, it looks like it's only been maintained until approximately mid-2009, but I got a good picture from it and some places to go for further research.

The Americans With Disabilities Act: The Important Themes Haven't Changed

I was struck by this sentence on Georgetown's website: "In 1990, after several rounds of negotiations and hearings, Congress enacted the ADA and, in doing so, marked a significant advancement for the civil rights of people with disabilities."

Civil rights. In my reading and writing about disabilities lately, this phrase keeps coming up again and again. And it's starting to become a divisive one, in that some of the things that people with disabilities are asking for because they consider it a civil rights issue are slamming up against what the people who can provide those things consider civil rights issues. Some of the ones that I've covered in this blog are:

  • The right for people in wheelchairs to access a taxi in the same manner that people without wheelchairs do.
  • The right for women with intellectual disabilities to make decisions about their bodies (the Ashley Treatment)
  • The right for people with physical disabilities who use wheelchairs to have full access to public and hotel pools. (I haven't talked about this in the blog yet, but look for it soon. I just wrote an article about it, and it's a very hotly debated accessibility issue right now.)

I've always liked to consider myself a fairly intelligent person who can look at an argument from both sides. But, even as a person who'd worked with people with intellectual disabilities for a while before my stoke, I didn't understand how frustrating it was to navigate society as someone in a wheelchair until I was forced to do it.

I wouldn't have connected a New Yorker in a wheelchair's experience of missing a movie with friends because the cab he called through the Access-A-Cab service never came, knowing that his friends got there in plenty of time because they hailed a cab from the street in front of the restaurant they met at, as something that would have been totally unacceptable if it had happened to someone in any other minority group in the city.

I wouldn't have thought about how it would have felt for a child that used a wheelchair not to be able to use a city pool in the summer, until the Americans with Disabilities Act started to mandate that cities find ways to give people with disabilities access to their pools.

I think that sometimes people rail against making these changes to make society accessible because they've never had to think about how they'd feel if they or a loved one were in the situation where a lack of accessibility and their civil rights were being violated being violated.

Which is why legislation like the Americans with Disabilities Act is so important.

Happy Birthday to the Americans with Disabilities Act.

Tuesday, 24 July 2012

Update: Joe Scarborough Clarifies Comments Regarding James Holmes andAutism

Joe Scarborough's reaction to criticism from autism advocates about his statement on James Holmes' shoot-out in Aurora, Colorado last week may been prompted by an autism diagnosis was quick. The commentary was made on Monday's edition of MSNBC's "Morning Joe", and Scarborough issued a clarification the next day.

I don't know.

You Never Get A Second Chance to Make a First Impression, Joe Scarborough

I don't get MSNBC. I've never watched "Morning Joe", and until yesterday I wouldn't have known Joe Scarborough if I'd fallen over him.

So what are my impressions now?

I remember thinking when I first viewed the video of Joe Scarborough's now-infamous "autism commentary" that he was rambling toward the end. It felt to me like he'd lost his focus. I heard him talking about the challenges of raising a child with Asperger's Syndrome and thought, "He's close to burning out. It's hard for him to talk about this." It felt to me, after listening to the video several times, that there was a point where he stopped talking about James Holmes and Aurora and started talking about the stress of supporting a family member who just doesn't fit into society very well.

But take a look at these sentences: "Most of it has to do with mental health; you have these people that are somewhere, I believe, on the autism scale. I don't know if that's the case here, but it happens more often than not." I don't know how to read this any other way than:

  1. Scarborough believes that the type of socially-disconnected individuals that conduct mass-shootings are more often than not somewhere on the autism scale (there's no evidence to suggest this.)

  2. Scarborough's point in bringing all this up is that he believes that James Holmes could possibly be on the autism spectrum.

I suppose that it could be a matter of unfortunate juxtaposition of comments about two separate things: Joe Scarborough's list of the characteristics that he believes mass-shooters  possess, and autism as an example of a mental health disability that causes isolation and requires a strong support system. But if that's the case, it's a very unfortunate juxtaposition, to the point of being unprofessional for a news commentator; Joe Scarborough owes people with autism not just a clarification, but an apology for linking James Holmes and autism in such a way that people who don't know better walk away after hearing his words saying, "I didn't know that autistic people could get violent like that...I'd better be careful."

I'm also not impressed with a bit of "victim-blaming" that I see going on in his clarification. I went through the responses to Joe Scarborough's remarks that I could find from the major autism advocacy groups, from some well-known journalists and disability bloggers, and what I could find in the media online. I never heard anyone say that he linked "all violent behaviour" to Asperger's. I believe that's a significant overstatement, and to say directly afterwards that those who did make that suggestion "missed my larger point and overlooked the fact that I have a wonderful, loving son with Aspergers" is just obnoxious. Here's a tip on trying to make peace with people that you've insulted, Joe: Don't insult them further by suggesting that the whole affair was their fault.

Bottom Line for Joe Scarborough

You've clarified. Now apologize. You've got nothing to lose and it really is the right thing to do.

James Holmes and Jumping to Conclusions

Last Friday morning, my cats got me up very early, and I just happened to turn to CNN's morning show for the first time in months. With the time difference, it was about 1.5 hours after James Holmes had opened fire in the movie theatre in Aurora, Colorado. I heard the first counts on how many people were injured and killed, and saw the initial witness interviews.

And eventually I turned the channel and only went back to the coverage for small amounts of time over the day, just long enough to get a sense of what was happening. I'm becoming increasingly unable to watch any of the 24-hour news networks for very long....partly because of the kind of commentary that Dylan Byers talks about in this Politico article:

Joe Scarborough Said that James Holmes Is What? Based on What?

Hey, Joe me at Camera Three.

It's not like disabilities advocates didn't know something like this was coming. We were totally prepared to counter the whole  "Everyone-knows-that-crazy-people-are-always-violent-and-that-violent-people-are-always-crazy" rhetoric that always comes screaming into the nation's dialogue whenever something like this happens. But we weren't prepared for someone playing armchair diagnostician on a national news show and speculating that James Holmes is on the autism spectrum,  basing his conclusions on evidence not supported by facts and what appears to be just speculations. You have a son with Asperger's. You know how difficult many people with an autism diagnosis find it to fit in with their peers and overcome stereotypes. Did you think this would help?

Speculation about James Holmes' diagnosis among your friends in your private residence is okay. It's not okay on a national news show. Even if you apologize for the words (which I hope you will), their effect is still out there.

I realize that you likely had 3 minutes of air time to fill with talk about James Holmes, but it's okay to say, "I don't know." I wish that commentators on the 24-hour news stations would do this more. Maybe you just should have read Dave Cullen's July 21st opinion piece out loud. He has some wise words about the dangers of  jumping to conclusions about James Holmes.

From that piece: "You've had 48 hours to reflect on the ghastly shooting in Colorado at a movie theater. You’ve been bombarded with “facts” and opinions about James Holmes’s motives. You have probably expressed your opinion on why he did it. You are probably wrong."

It's Okay to Be Pissed Off. But Hold the Speculation Until We Know More

What James Holmes did, for whatever reason he did it (and quite frankly, I don't think we'll ever completely know) was horrible. It certainly kept me awake over the weekend, because I can't fathom what kind of mind would do that. But I think that all of us, and especially the people in the media, have to be  very, very careful about ascribing motives and realize that anything at this point is all speculation. Especially if you're in a position of power (and this doesn't just apply to media figures, but  includes parents talking to their kids, teachers talking to kids...anyone talking to kids, really), realize that your words have weight. Avoid speculating about James Holmes' mind and creating more unnecessary stigma around groups that just don't need it.

Rachel Cohen-Rottenberg over at "Disability and Representation" did some excellent blogging on this, and has created a petition asking Joe Scarborough and MSNBC to retract his remarks. Please go read:

Dave Cullen's opinion piece (also must-read):

Monday, 23 July 2012

Child Protection Services: Call to Action

Before Ontario's provincial election last year, I posted about how I'd gladly support any candidate for Premier that would extend the the point at which children "age-out" of  child protection services (Children's Aid Society, or CAS, in Ontario) from 16 to 18. I had some conversations this weekend that reminded me about why I think that's so important, so I'm blogging about it again.

In Ontario, unless a child in the CAS system is a crown ward when they turn 16, and therefore applies for a program called Extended Maintenance, they get pushed into a society that's void of protection services. 

Yes, they're still eligible for social services within the children's system. But if they've ended up back in a house with abusive parents, or in another abusive situation, they don't qualify for child protection services anymore. Teens with disabilities don't qualify with adult protective services yet. They are in a no-man's-land until age 18. For a teen with disabilities, in an abusive situation...that's a hell of a long time.

Options, Options...Options?

Any teen can legally move out at age 16, yes.  But the teens who don't have a place to go have a real problem. Education law in Ontario now stipulates that they need to be in school until they're 18. They must also be in school, and have someone trustworthy willing to act as trustee, before they can receive social assistance.

It's difficult to find these kids a place to go. They learn to survive however they can, either in the abusive home or as "couchsurfers" in other peoples' homes. I'm surprised by the number that actually manage that way.

I couldn't have made it on my own at 16.

Child Protection Services and Teens with Disabilities

If a teen faces the added challenge of living with one or more disabilities on top of having no place to go, that infinitely complicates matters. Entire teams of people representing multiple agencies can have difficulty finding a safe, appropriate place for the teen to go. I know - I've been on these teams.

Realizing that in that two years between 16 and 18, when child protection services in Ontario stop and adult protective services kick in, it's like moving a mountain to get a teen with disabilities in an abusive situation to a safe space has been...a source of disillusionment with working in social services.

Hence the Call to Action!

There's no reason why every child in Canada can't be assured of child protection services until age 18. In Quebec, Manitoba, and Alberta, child protection services already go to age 18. In the Yukon and British Columbia, they go to 19.  So here's what I want you to do.

If you live in Newfoundland/Labrador, Prince Edward Island, Nova Scotia, New Brunswick, Ontario or Saskatchewan, write a letter to your Member of Provincial Parliament. Tell him/her that children in your province need to be protected from abuse until age 18. Hell, I'll write and post a letter that people can send or email to their MPPs. Leave a comment or contact me if this is something that interests you.

People in the US...research when people "age-out" of child protective services  in your state and see if there's a gap before teens with disabilities can access adult protective services. I'd be happy to write a letter for you, too. 

Yeah, I feel strongly about this. These are our kids. They deserve as much safety and stability in childhood as we're capable of giving them. They deserve a chance.

Canadian Child Welfare Research Portal:

Thursday, 19 July 2012

Changes to Laws in Canada Regarding Physician-Assisted Suicide

So, I missed a major Canadian story in June, about changes in the laws regarding physician-assisted suicide. I apologize.  What can I say? I watch too much American news!

The laws regarding physician-assisted suicide in Canada got a major shake-up in June. The British Columbia Supreme Court ruled that doctors be exempt from criminal charges if they assist a person who is terminally ill and who has requested to die to commit suicide.  The federal government will be appealing the ruling, as it partially lifts the ban on physician-lifted suicide.

The BC Supreme Court then immediately made an exemption to the new ruling for Gloria Taylor, one of parties who sought the ruling. Taylor and her doctor believe that the ban on physician-assisted suicide is unconstitutional in that prevents people who don't have the means or ability to do so from taking their own lives if they so choose.  The BC Supreme Court exempted her from the new ruling from a year in order to give the federal government a chance to rewrite the physician-assisted suicide laws, but advocates still find the move confusing (as do I).

But, putting that confusion aside for a moment to consider how I feel about the ruling in general...I think that the federal government is right to appeal. This is nothing to be jumped into.

On Suicide

Emotional pain has made me suicidal at several points in my life. I've never been to the point where I've had a plan or a date in mind, but there have definitely been times when it's seemed like a good alternative to dealing with whatever I've been dealing with. I've not felt like that for a long time now, which is something for which I'm really grateful.

I don't want to deprive anyone of the liberty to do what they want with their own body, but I'm not pro-suicide by any means. I once called the police on a friend in another province who left something that sounded like a suicide note in her LiveJournal. I didn't have any contact information for her family or friends, I felt like time was critical, so I used the resources that I had available to me. I did this not because I wanted to violate her right to kill herself if she chose to, but because I was scared that in her mental state (which had been unstable for several weeks) she didn't understand the consequences of her actions.

Which is my objection to the ruling in general: Even though it applies only to people with terminal illness, I'd want to be sure that there's the medical infrastructure in place to ensure that people requesting physician-assisted suicide understand exactly what they're requesting and that there isn't a concurrent diagnosis like depression influencing the request. I think that countries that allow physician-assisted suicide currently screen for these things.

If this concern were properly addressed, I don't think that I'd have a problem with this ruling. But, looking at the ruling from a disability standpoint, I think it's very problematic.

Permitting Physician-Assisted Suicide - Proceed with Extreme Caution, for the Sake of People with Disabilities

I'm uncomfortable living in a society where physician-assisted suicide is legal and the following attitudes toward people with disabilities are still so widespread:

  • We're a drain on public resources

  • We make a small contribution to society, if any

  • We're ultimately defined by what we can't do

  • Some of us are so disabled that we shouldn't be allowed to live, let alone participate in the community

  • It's okay for other people to make decisions about whether or not we live or die

The ruling talks about terminal illness and the person with the illness making the request to die. But there are plenty of people out there who look at disability as an illness, and the fact that severe disability often does not get any less severe as a terminal condition. And there are plenty of people willing to by-pass a communication process with a person with a severe disability if that process doesn't serve them.

Look at Annette Corriveau, who has been fighting for the right to end the lives of her two adult children with severe disabilities. who cannot verbally communicate their wishes. She assumes that they want to die, because she would want to die if she had their disabilities. Is this ruling a "slippery slope" for the Annette Coriveaus of the world? Or the doctors who don't believe that infants with Down's Syndrome should be kept alive using extraordinary measures?

Sadly, one of the things that makes people with disabilities vulnerable in society in general is the tendency to view them using the "medical model" - disability is a tragedy, and people with disabilities need to be cured. For people that look at disability using the medical model (and they're not necessarily just people in the medical profession), medical science's inability to cure people with disabilities and have them lead what they consider "fulfilling lives" as "productive members of society" is extremely problematic. My concern about lifting the ban on physician-assisted suicide when the model model of disability is so much a part of our worldview is that people who can't speak up for themselves, like Annette Corriveau's children, may start to find themselves in danger.

Other countries have made physician-assisted suicide work. But, in order to protect our most vulnerable, we'd have to be very, very careful about implementing it in Canada.

More on this story:

More on Annette Corriveau:

Monday, 16 July 2012

Service Providers for People with Disabilities: What's Your Limit?

Recently I was reading through some old posts that I made on a message board. I came across one in a debate thread about whether pharmacists should be required to dispense the morning-after pill, regardless of their beliefs on abortion. This was a few years ago, not long after I'd acquired my disabilities. The topic of birth control  and the morning after pill in America had only just started the march toward the mess it's become now. But even then I seemed to know what I thought.

"It's a pharmacist's job to dispense medication," I wrote. "If that's going to interfere with their values, then perhaps they'd better find a job that's not going to interfere with their values. Or drug stores should always ensure that there's another pharmacist on hand who will dispense the pill." I remember feeling very strongly about this, as at the time there was only one pharmacy in the very small town in which I was living.

People With Disabilities - Is There a Point Where You *Couldn't* Support Someone?

I've been thinking lately about how these same sorts of issues may apply to people who support people with disabilities. What if, for example:

  • Your religious beliefs dictate that premarital sex is wrong, yet part of your job is to support two people with intellectual disabilities who want to live together as boyfriend and girlfriend and have a sexual relationship?

  • You believe that homosexuality is wrong, and part of your job is to find some community support for a person with intellectual and physical disabilities who  has just told his family and friends that he is gay?

  • A young woman with physical disabilities wants you, as her support person, to come with her to a clinic so that she can deal with an accidental pregnancy by having an abortion?  You have been pro-life for as long as you can remember.

The answer, for all of these scenarios, seems very clear-cut to me: As support people, it's our job to support people in the choices that they make. I'd want to make sure that they know all their options in their respective situations, of course, and that they're aware of all the potential consequences of their decisions. But, regardless of my beliefs (not just because I'm fine with premarital sex and the homosexual lifestyle and because I'm pro-choice), I believe that it's my job to support people with what they've requested, as they ask for it. If the same young woman decided to deal with her accidental pregnancy by keeping the baby, and I thought it was a bad decision, I'd like to think that I could, as her support worker, suck it up and give her as much assistance as possible. In fact, I'm confident that I could. I'm proud of that.

The Importance of Handling Sensitive Conversations Well

To that end, I think that support staff need to quickly learn how to present options to people with disabilities and have discussions around them in such a way that our personal feelings about the person's ultimate decision aren't obvious. The risks of the person doing to please us (or possibly spite us, depending on the circumstances - it could happen) are too high. It takes a while to learn how to conduct discussions in this manner, and sometimes it's very difficult to do. But it's vital that we do. The challenges involved with having these conversations differ according to what kind of disabilities the person with whom you're trying to communicate is living with.

In general, the prospect of having to support somebody in a decision that you wouldn't make yourself and that's highly emotional for you is daunting, but this is where professionalism comes in.  If you don't think it's something that you can handle, you need to find another staff member who can, and you need to explain to the person you're supporting that you're stepping back because you're not the best person to help right now. Handle this carefully. Be prepared to give the conversation some time. The person needs to leave the conversation knowing that it's about you, not them, and that it's just this area with which you won't offering support for the moment.

Of course, all of this is going to vary depending on what your work is with people with what disabilities, what your background and education are, and what resources you have available. But I feel pretty confident in saying that if you're not prepared to deal with something that's going to make you think, "Damn it, this person's challenge is my challenge too...can I really handle this?" then you're probably not ready for *any* helping profession, or you need to take a break. No shame in either, by the way. Far better for everyone involved to just admit it.

The thing about the helping professions is that they can be intensely humbling. Uncomfortably so, at times (at least for me). I don't think there's any shame in admitting this, either.

I know that there are people in the helping professions reading this...what say you?  Anything here strike you?

Friday, 13 July 2012

My Inevitable Post About Daniel Tosh

Because You Know That I Couldn't Stay Quiet On This One

Oh goody, another comedian to avoid. For those that haven't heard, Daniel Tosh is in the media spotlight this week over a controversy involving rape jokes in his recent appearance at the Laugh Factory in Los Angeles. Tumblr blogger "cookies for breakfast" posted an account of a woman who was at Daniel Tosh's show:

"So Tosh then starts making some very generalizing, declarative statements about rape jokes always being funny, how can a rape joke not be funny, rape is hilarious, etc. I don’t know why he was so repetitive about it but I felt provoked because I, for one, DON’T find them funny and never have. So I didnt appreciate Daniel Tosh (or anyone!) telling me I should find them funny. So I yelled out, “Actually, rape jokes are never funny!”

I did it because, even though being “disruptive” is against my nature, I felt that sitting there and saying nothing, or leaving quietly, would have been against my values as a person and as a woman. I don’t sit there while someone tells me how I should feel about something as profound and damaging as rape.

After I called out to him, Tosh paused for a moment. Then, he says, 'Wouldn’t it be funny if that girl got raped by like, 5 guys right now? Like right now? What if a bunch of guys just raped her…'"

Read the woman's full account here:

The club owner says that it went down differently than the woman claims, and Daniel Tosh claims "context misquotes" in his tweeted apology. But the incident has ignited an intense debate between two powerful groups: those who believe that comedy can be about anything, and those that jokes like the ones that Daniel Tosh told have no place in comedy.

Damn Daniel Tosh for Complicating My Life

I had no idea who Daniel Tosh was until the day before yesterday. I'd never heard his comedy. I saw link about this story and was pretty disgusted when I read it, and I've tried several times to get my thoughts together on the issue and get them down here. Because this has disturbed me as a feminist, as a woman with disabilities, as someone who's worked with women with disabilities...not to mention as someone who knows many women who have been raped, and as an aunt to a beautiful niece who will be celebrating her first birthday in just over a month.

Debates of this nature come up every time comedians use a slur like "retard" in a routine. I thought I knew how I felt - that if comedians are willing to make one vulnerable group a target, then they should have the integrity to be willing to make any vulnerable group a target, and I can always walk away if I don't like it (which I do. I don't like comedy that makes targets of people).

This seems different somehow, though, and I haven't quite worked out why yet. I do know that with the sexual assault rates for women in general, and women with disabilities in particular, so high (and the rates for men likely higher than they are because of under-reporting), I'm very uncomfortable with any comedian inciting group rape as part of his routine. I feel very off-balance; this really threw my beliefs about the "shoulds" and "shouldn'ts" of comedy, and my ideas of from what I'm prepared to just walk away with a "Oh well, I don't have to listen to it. Just be fair, if you're going to be mean."

I still need to do some more thinking. But I really, really like this woman's perspective:

What side do you come down on? Is there "nothing sacred" in comedy, or should some things just not be joked about?

Sunday, 8 July 2012

We Need a New Word for "Disability"

I'm stuck on terminology. I'm becoming increasingly disillusioned with the  disability word "disability".

In my last job, I worked hard with the people I supported to help them realize that they had disabilities and to realize what that meant in their lives. I did this  for two reasons:

  1. The agency's terminology of choice was "intellectual disability", in consultation with self-advocates.

  2. "Disability" is so widely used that people really do need to know what it means for them. They need to be able to say, "I have a disability and because of it I need..." and they need to understand "disability" in order to understand and makes decisions about applying for supports that may be available to them.

I didn't realize until recently though, that I just don't like that word "disability" anymore. I'll probably still use it, just because it's such a socially recognized word, and I'm not sure yet what word I'd use to replace it. But I've really started to think about it.

Musings on "Disability"

My arm and leg may work a bit differently than everyone else's, but they're still "abled".  Some of the people I've worked with have been plenty more "able" in some areas than I have , even before the stroke - better dancers, better bowlers, even better cooks. And even  though I'm a mediocre dancer, a terrible bowler and can barely cook a thing, I'm not "dis-abled". In many areas I'm very "abled".

But what do we replace "disability" with? I was struck by "diffability" when I first heard it, but rejected it for the same reasons that I have "differently abled": It sounds like we're trying too hard to put a positive spin in the wrong direction on disability. "Disability" could use some positivity associated with it, but it doesn't need a spin implying that people with disabilities are different than everyone else.

Besides, everyone is "differently abled" when compared with the people around them. My sister had trouble writing essays in high school, when that was something that came very easily to me. I struggled with math, when that came easily to her. The fact that we're all differently abled and have opportunities to use our strengths to contribute to society is a good thing, but that aspect of "differently abled" doesn't come out in the way it's used now.

"Disability" - What We Need

We need a word that:

  1. Conveys the importance of focussing on commonalities, not differences

  2. Stresses focussing on what people can do, rather than what they can't do

  3. Uses positive phrasing.

Socially, it should also be a word that we're prepared to make obsolete. Because if there's anything I've learned about working with people with disabilities for so long, and living with disabilities myself, it's that the things that *really* disable people and keep them from living "normal" lives are external to them. The barriers that create "disability" are out there in society, and society needs to become prepared to tear those barriers down:

  1. Make buildings/websites/transportation/processes more accessible.

  2. Design supports so that people with disabilities had a better shot at employment, education, income support and appropriate housing.

  3. Make our communities places in which everyone can participate fully and safely.

  4. Open peoples' minds and hearts and find ways to change attitudes that disable people.

Let's make the dream to eliminate "disability" and any other words for it completely, so that we all just become people with different strengths and needs trying to live together. Because, really...isn't that what we are already?


On a totally unrelated note, I'm now writing articles about one-handed living over at Zujava. Check out the first in the series:

Wednesday, 4 July 2012

UN Investigates Whether Torture is Happening at Judge Rotenberg Center

I clearly remember debates, as recently as since Obama's come into power, Judge Rotenberg Centerabout whether the US uses torture to get information from suspected terrorists, and the ethical implications of doing so. It dominated the news for a while. Americans were really concerned about this question.

Why, I wonder, haven't we been so concerned about the torture *definitely* going on (in my opinion) right under our noses at the Judge Rotenberg Center for children with autism?  I don't know what else you call restraining a child face-down for seven hours for refusing to take off his coat and shocking him 31 times for tensing his body and yelling.

All Part of Judge Rotenberg Center's Treatment Plan

This was part of Andre McCollins' treatment plan. Even though it left him catatonic and put him in the hospital for nearly 6 weeks, Judge Rotenberg Center stood by it's actions and fought against a bill that would prevent it from using aversive shock treatment.

The 2002 video that brought all this to light (which Judge Rotenberg Center fought to repress), was made available to the public in April. Some of the footage is here. Be warned that it is difficult to watch:

A US Senate Committee held a hearing into the aversive therapy used at the Judge Rotenberg Center, and the UN has been asked to rule on whether what's happening at the Center is torture.

Judge Rotenberg's reaction to this? The Parent Association said:

"We are outraged that these people would use our vulnerable children as pawns. The right to choose the appropriate and safe treatment for our children, when nothing else has worked, must remain an option for the small percentage of children for whom this is a matter of life or death,"

Judge Rotenberg's response to all the attention it received from the 2002 video of Andre McCollins is here, for what it's worth:

And the government ultimately sided with them. The proposed shock ban was left out of the state budget, and the Judge Rotenberg Center can continue to use shock treatments for therapy.

Meet Me At Camera Three, Massachusetts Government

I'm sure that no one will be surprised that I call "bullshit" on all this. We treat our prisoners better than we're treating these kids. Refusing to take off your coat is not a matter of life-or-death. Even if we lived in a world where you could justify shocking a kid because of that behaviour, you can't justify retraining them for seven hours and shocking them 31 times. And I don't really care that most children in treatment at the Judge Rotenberg Center don't get shock therapy treatment. One child getting treated the way Andre McCollins did is one child too many.

Shame on you for your endorsement of the continued abuse of children with disabilities. I hope that the UN says unequivocally that Judge Rotenberg Center is torturing these kids and shuts the place down. Shame on you too, administrators of Judge Rotenberg Center. I'd like to know how you sleep at night, knowing what goes on in your facility.

Okay, I'll Stop Here

You get the point. Probably best to just stop here before I say something I really regret.

Sunday, 1 July 2012

Book Review - "Chicken Boy: The Amazing Adventures of a Super Hero With Autism"

Book Review - "Chicken Boy: The Amazing Adventures of a Super Hero With  Chicken Boy: The Amazing Adventures of a Super Hero With Autism Autism"

Children are often curious about my disabilities and how I got them, whether they hurt, why I have to use a cane. I encourage them to ask questions, but sometimes struggle to include in my answers themes that I think are important:

  1. People with disabilities are more like you than than they are different from you.

  2. We don't need to be afraid of people who are different.

  3. I don't mind walking differently and using my hands differently than other people, and my real friends don't mind that I do these things either. They know that my disabilities are part of what makes me "me", and wouldn't change them about me.

Sometimes it's difficult for children to understand these things, so I'm always on the look-out for resources that help explain concepts involved with "disability", but with an emphasis on inclusion and on the importance of focusing on peoples' commonalities, not their differences.

That's why I really like "Chicken Boy: The Amazing Adventures of a Super Hero With Autism" by Gregory G. Allen, printed by ASD Publishing in 2012.

A Boy With Autism

I liked "Chicken Boy: The Amazing Adventures of a Super Hero With Autism" as soon as I saw illustrator Dennis Culver's drawing of him on the front cover of Allen's 32-page book. He's a smiling young man wearing jeans, a purple t-shirt with a large chicken graphic on the front, and a red cape. We learn that Chicken Boy is a super hero that the smiling young man sometimes becomes.

We also learn that the young man has autism, "which is a fancy word...for me living inside my own brain," he explains.

A Chicken Boy!


Head back, cape flowing behind him, the smiling young man becomes Chicken Boy soon after explaining that he has autism. I smile too. It's difficult not to smile at the illustrations, and at the way that Allen neatly draws the boy's narrative away from being a boy with autism to one of, "This is when Chicken Boy comes out, this is what Chicken Boy likes and doesn't like, and Chicken Boy acts the way he does because..."

Offering these explanations, he just asks for a little bit of patience from his schoolmates, so that perhaps they can be friends with him...and maybe even become Chicken Super Heros themselves.

Why I Like "Chicken Boy: The Amazing Adventures of a Super Hero with Autism"

Allen's book paints a picture of a boy who not only doesn't let a diagnosis and any potential stigma that it carries stop him from doing what he wants, but doesn't give his diagnosis much thought at all. He's totally accepting of his tendency to "live in his head" and of his Chicken Boy alter ego. In a world where people with autism have to endure significant social stigma and constant attempts to "fix" them, it's quite an empowering message.

"Chicken Boy: The Amazing Adventures of a Super Hero With Autism" is also a great book with which to do disability education with children. There is some mention of a disability/diagnosis, but the book's main themes are the ones I outlined in my first paragraph. The message that we can be friends with people who are different than us (diagnosis or not) is a powerful one with which parents and educators can work.

It all makes for a delightful story, told in a dynamic and visually appealing way for children and in a thought-provoking way for adults. Expect some good conversation to come out of this one as you share it with the children in your life.

"Chicken Boy: The Amazing Adventures of a Super Hero With Autism" is available at and