Monday, 30 April 2012

Music Therapy and Intellectual Disability

I once supported a young man with an intellectual disability, unable to communicate verbally using words, who cried every time he heard the Canadian national anthem. No one involved in his life knew why, and he unfortunately couldn't tell us any in any other way. Something about that piece of music obviously touched him deeply, for better or for worse.  I don't think that anyone would deny that music is powerful, least of all Music Therapist Roia Rafieyan.  I heard a fascinating interview with Roia on Friday about her work with individuals with intellectual disabilities.

Roia Rafieyan's Work

Roia Rafieyan is a music therapist in a state institution for people with intellectual disabilities. Many of the people that she supports are on the autism spectrum and don't communicate verbally, yet come to her with deep issues like abandonment or trauma, and it's difficult to establish a therapeutic relationship. Roia uses a therapeutic approach called "object relations" to work with clients through song and music.

Object relations is very process-oriented. Clients have goals, such as learning to indicate appropriately when they want to end a session, or making eye contact. Ultimately, however, therapy is more about building the relationship between the therapist, client and the music. Ideally, people will want eventually want to engage in any goal behaviours because they're in a relationship that means something to them.

Roia uses singing and music to let people know that she's listening to what they have to say, and to give people ways to respond to her. She gives choices about what their responses can be: "If you'd like to continue, look at me, and if you'd like to do something else, tell me with your voice." She talks about having a conversation with a person who doesn't communicate verbally using language with her in session, but with bells.

Person-Centred in a Non-Person-Centred Environment

I think what really delights me about Roia Rafieyan's work in the context in which she does is that it's very person-centred. It puts the client and their needs at the centre of the session and lets them make choices, which is the essence of person-centred planning in any context. She talks about how life in an institution is usually "Do this" instead of "What would you like to do?", and about how being in dialogue with someone else is often a new experience for the people with whom she works. Roia says that she has to model "dialogue" and show people what's involved with it.

Roia's work in an institutional setting gives people who don't get much choice in their daily routine or opportunity to express themselves to be in control of their experience for a brief period. The fact that Roia *does* cultivate relationships with people and be in dialogue with her clients in a testament to how powerful her person-centred approach actually is. The key to this powerful approach is careful listening, which Roia says is 95% of her job.

"I think our clients really understand a heck of a lot more than they're able to convey to people," Roia says.

I find Roia's approach very intuitive, and her work is very exciting to me.  She obviously has a deep respect for her clients and a passion for her work, and it's so interesting to hear her speak about what she does. I've only touched on the interview's major points here. It's really worth a listen.

Roia Rafieyan's blog:

Roia Rafieyan's music site:

Thursday, 26 April 2012

Canadian Charter of Rights and Freedoms Turns 30 This Week

I was reading Donna Thomson's blog this week, and I stumbled across another reason why I'm proud to be a Canadian. Thomson, you may remember, is the author of "The Four Walls of My Freedom", which I reviewed recently in this space .  This week she was in Ottawa to celebrate the 30th anniversary of the Canadian Charter of Rights and Freedoms.

Canadian Charter of Rights and Freedoms and Disability Rights

The 30th anniversary of anything, let alone such important legislation, is worth celebrating. However, it's worth noting that when the Canadian Charter of Rights and Freedoms was enacted, our politicians were processing some important information at the time. The world had just come off of the International Year of the Disabled Person in 1981. A Parliamentary Committee had produced Obstacles,  a very detailed report about the concerns of Canadians with disabilities. People who wanted disability rights included in the Charter made sure that disability issues were in the government's face during the drafting process.

Government Fun

The government resisted - no other country in the world was doing this. It was "unchartered" territory (bad joke, yes).  Eventually, they made a compromise to the Committee: Protection to people with physical disabilities, but not mental disabilities.

As Sherri Torjman of the Caledon Institute of Social Policy writes in her blog:

"Members of the House of Commons Committee faced a serious crise de conscience.  They knew that this was a unique opportunity to ensure inclusion of disability in the Charter.  How many times in the course of history does a country renew its Constitution?  But they also knew that excluding mental disability from the Charter of Rights and Freedoms would make the Committee guilty of the very discrimination that its members were fighting to overcome.  The acceptance of physical disability alone would have been a hollow victory at best."

The Committee refused the offer, and the government ended up backing down. Thus, on April 24, 1982, people with mental and physical disabilities became protected under the Canadian Charter of Rights and Freedoms. We were the first country in the world to offer this protection to our citizens with disabilities.

Good on us. :)

Happy Friday!

Donna Thomson's blog:

Sherri Torjman's blog:

Tuesday, 24 April 2012

Way to Go, Noah Wyle...I've Always Liked Those "ER" Docs...

And no, I'm not just talking about the fact that they were all *very* easy on the eyes. ;) I've always had a great deal of respect for George Clooney's activist work, and it looks as if his co-star Noah Wyle is following in his footsteps.

Noah Wyle was arrested at a protest on Capitol Hill on Monday. He'd joined other ADAPT members to protest Medicaid cuts that will reduce in-home medical services for people with disabilities. One hundred other protesters were arrested along with Noah Wyle.,0,7277200.story

ADAPT originally stood for "Americans Disabled for Accessible Public Transit", but the organization's mandate has spread far beyond transportation in recent years.  Grassroots
advocacy for effective community supports for people with disabilities is now it's major focus. ADAPT's achievements include:

  •  Developing the Medicaid Community Attendant Services and Supports Act, to get people with disabilities out of nursing homes and institutions and receiving medical services in community residential settings. Now known as the Community Choice Act.

  • Working to make sure that states receive funds from Money Follows the Person

  • Developing the Access Across America campaign for housing for people with disabilities

  • Training chapter leaders

  • Operating two national bases in the United States

  • Publishing a quarterly newsletter

But Back to Noah Wyle

I really admire celebrities, who obviously have a lot invested in maintaining a certain image, who are willing to take a risk and stand up for their beliefs (and Noah Wyle is currently acting in a TV series, "Falling Skies"). Susan Sarandon and Tim Robbins are two other working actors that do a lot of activist work that spring to mind.

Obviously any volunteer's time and energy is valuable for a non-profit energy struggling to get its energy out there...and it's amazing when you find people committed enough to a cause to be arrested for it...but it doesn't get in the news when us Regular Joes get arrested.  A star willing to get arrested for a cause - that gets us in the news.  Noah Wyle was aware that he could get arrested, and he went through with this anyway, and that restores a bit of my faith in Hollywood.  Thank you, Noah.

And Thank You To Others That Have a Lot To Lose

And, as a person who would like to work in social services again and could therefore have a lot to lose from an arrest, I'd like to thank the teachers, social workers, health care workers, etc., that undoubtedly show up at protests like these. I know what you're potentially risking for your beliefs. You truly rock. :)

ADAPT is taking National Action in Washington, D.C. until April 26, if anyone still wants to join.

More about ADAPT:

Sunday, 22 April 2012

Attn: Editor of the New York Post, re: Americans with Disabilities Acteditoral

On April 21, the New York Post published an editorial on the Americans with Disabilities Act editorial that, well, really surprised me.

First, A Story

The first Christmas after my mother died, when I was 20 years old, my father, my sister and a family friend went to New York for Christmas to avoid being around the family home and the memories. We were determined to make it a good trip. We were there from the 26th to Jan 1st. We stayed in a nice hotel and ate nice food. We did all the touristy things. We saw shows. We took *plenty* of cabs.

All of this was pre-stroke, so I didn't have trouble getting in and out of cabs. But if we'd had to make this trip with me even in my folding wheelchair, I wonder if the trip would have been as good as it was. Given what I know now about taxis in New York, I'd bet it would have been a lot more stressful - perhaps stressful enough to make us consider going to another city.  And it would have been a shame for New York's economy if we'd decided to go somewhere else that week.

The New York Post on the Americans with Disabilities Act: "...the misery the law inflicts on everyone else seems far more than that of those it helps."


Let me be sure I understand this, Editor. The Americans with Disabilities Act is making non-disabled people in New York City miserable because:

  • Unscrupulous lawyers are encouraging people to file frivolous lawsuits based on the Americans With Disabilities Act.

  • The cost of making facilities accessible (like pools and subway stations) is straining the city's budgets.

  • Requiring more accessible taxi cabs or a plan to increase access to existing cabs for people with disabilities is unacceptable Americans with Disabilities Act overreach.

Editor, is your beef not more with lawyers and contractors than  with the Americans with Disabilities Act and those trying to enforce it?

And you need to hear another story.

Hypothetical, But It Could Happen

Imagine you, Editor, as a resident of New York, used a motorized wheelchair. Imagine you got a call that your child, at a friend's birthday party, had been hit by a car chasing a ball into the street and was in critical condition at a hospital across town.

The dial-a-cab service that provides accessible cabs can get you a cab in an hour. But by the time you've mapped a route through the accessible stations, it's going to take over an hour for you to get there anyway. Your child might not be alive by then.

Is this fair? Or just?

Universal Design Isn't Disabling

Editor, a physically accessible city is one that allows people with disabilities to work, volunteer, access needed services and spend money (and we know that cities love that!)

It's one that allows people who have temporary disabilities (from casts and crutches to arthritis flare-ups) to get around more easily.

Heck, it allows parents with strollers to get around *much* more easily.

Please remember, Editor, how easily you could acquire a disability. No one likes to think about that, but it's true. What would you be saying about this then?

Friday, 20 April 2012

Annie Clark Wins Penmanship Award by Writing with her Forearms

Annie Clark of Pittsburgh, seven years old, says that she was "Not really scared" but "kind of" when she accepted the Nicholas Maxim Award. She is one of two students to receive the prize, awarded for the first time this year by educational publisher Zaner-Bloser Inc., to students with disabilities for exemplary penmanship.

Clark was born without hands. She writes with her pencil between her forearms. Her adoptive parents, Mary Ellen and Tom Clark, couldn't be prouder of her, and hope that this experience reinforces to her that she can do anything.

Annie Clark Already Does A Great Deal

Mary Ellen may worry that Annie sometimes wishes for hands, but we must remember that Annie is only seven years old and surrounded by "abled" peers. She may not recognize how remarkable it is that she gets along so well with no hands.

Annie uses her forearms to feed and dress herself and even paint her toenails. "In addition to writing, she paints, draws and colors. She plays the board game Battleship and swims. She dresses herself and opens cans of soda pop. She uses her iPod Touch and computers without assistance," says

Annie's school didn't know that the Zaner-Bloser competition had a division for students with disabilities. Annie won penmanship award for her entire school. It was only when her name was forwarded to the state level that the contest officials suggested that she be put in the division for children with disabilities.

I'm curious to know whether Annie was offered the opportunity to compete with the other students who won first prize at their schools. If so, which option was she encouraged to take, and by whom? If not, why does the presence of a disability automatically mean that she was labelled and put into a certain class of competition, regardless of her ability level?

Not That Having a Disability or Annie Clark Competing in that Division is A Bad Thing...

Or that it should take away from her victory in any way.

Perhaps her parents thought that being in the disability division was the better option for her.

Perhaps Annie Clark wanted to be in the disability division.

But if Zaner-Bloser compelled Annie Clark or her family to put her in the disability division - shame on them. They should have known that she deserved to to compete with the other students who had come first at their schools, regardless of her disability.

USA Today Article:

TribLive News Article:

Tuesday, 17 April 2012

My Brain AVM Story: Living Post-Stroke - "The Little Ways"

I had a conversation recently with a woman who'd had to live one-handed for a while after a car accident (using her non-dominant hand, like I do), and who also lived with what she thought was a brain injury for quite some time (it turned out that her tendency to lose words or use the wrong word in a sentence was due to severe sleep apnea). It started me thinking about the little ways in which I've had to adjust my post-stroke life.

My Friends Tell Me I'm Just Getting Old, But...

Before the stroke, I didn't use a calendar or daybook. I didn't need them. I could keep track of my schedule and my appointments in my head. I could also remember phone numbers with without any difficulty.

Post-stroke, I can't do either, and accepting that I now need to write everything down has been difficult. It's interesting that while I'm generally accepting of how my abilities have changed post-stroke in just about every other sphere of my life, I sometimes "rebel" about the change in this one. I'll then have to call and ask when an appointment time is, or even miss an appointment, and the embarrassment puts me on track with writing things down again.

Living Post-Stroke with One Hand

I've talked elsewhere about how I do most of what I need to do post-stroke with one hand, without even thinking about it now. There are a couple of things that required some creativity to get around:

  • Putting on my bra. Maybe I'll demonstrate this (fully-clothed) on the You-Tube channel someday.

  • Wearing dress shoes. I generally wear Blundtstones boots, for ankle support, and I have to be careful with dress shoes because my left foot doesn't sit well in them and I'll walk right out of them. For my sister's wedding, we secured my left foot in my shoe with some dressmaker's elastic. I wear black ballet shoe-style slippers when I can get away with it.

  • Opening containers. I open often bags (like chip bags) with my right hand and my teeth, which is very undignified but effective. My medicines are in non-childproof containers to make them easier to open. I can open some jars, but sometimes I must ask for help.

I used to have a lot of trouble asking for help, and I still don't really like to, but I'm not embarrassed when I do. I've got a good sense now of when I'm wasting a lot of time and energy and just ultimately frustrating myself trying do something that someone with two hands could easily do in under a under a moment. Last night I asked my brother-in-law to cut my steak for me. I've also been known to walk out into the lounge in my building and ask someone to open a jar for me.

All in all, I'm living a very functional, pain-free post-stroke life, and I'm very, very grateful for that. Things could definitely be a lot worse.

Sunday, 15 April 2012

Book Review: "The Four Walls of My Freedom"

My family’s Easter was quiet this year, and a damaged router cord meant no Internet access for the weekend. So I spent Easter Sunday and Monday reading a book that I believe is very important: The Four Walls of My Freedom.

As promised last week, here is my review of Donna Thomson’s The Four Walls of My Freedom.

Girl With The Cane Book Review: The Four Walls of My Freedom

Donna Thomson's The Four Walls of My Freedom (McArthur and Co., 2010) is a must-read for anyone involved in the disabilities field.

Thomson's 263-page work (including acknowledgments, appendices, endnotes, bibliography and index) is fascinating firstly because it’s part memoir. Thomson and her husband Jim Wright are parents to daughter Natalie and son Nicholas, who has cerebral palsy. The Wrights’ story of raising Nicholas will be all-too-familiar to many families: struggles to get him properly diagnosed and find effective early intervention, finding public schools that were willing to take him as a student, securing funding for respite, personal development, and future planning, dealing with his severe health issues and constant pain, balancing his needs with Natalie’s as best as they could, and trying to avoid burnout themselves as caregivers. All of this as Jim worked in high-profile diplomatic posts with the Canadian government that required a family move to London from 1992 to 1996, and again from 2006 to 2012.

Thomson’s narrative is by turns moving, gently humourous, heart-breaking, and, in the case of her account of Nichloas’ first hip surgery, horrifying.  A deep passion underlies all her writing about Nicholas and her family, however.  Her dedication to making sure that Nicholas, now in his twenties, is living the life that he wants to live, enriched by relationships with people of his choosing and activities in which he finds fulfillment, is palpable from the first page.

Thomson’s perspective as the mother of a child with severe disabilities gives her other voice in The Four Walls of My Freedom a powerful authority.  Interspersing her insights with her family narrative, Thomson examines the current modes of thinking underlying support for people with disabilities from a justice perspective. She suggests reshaping them according them to economic philosopher Amartya Sen’s Capability Approach, most typically applied to people living in poverty.  She deserves major intellectual kudos for tackling traditionally “thorny” philosophical issues such as what gives a person’s life value, what makes them “worthy” of receiving supports and services, and what constitutes “contribution to society”, and for backing up her arguments with the work of philosophers also currently asking these questions.

Thomson’s discussion of specific disability supports focuses mainly on those in Ontario, Canada, where Nicholas spent most of his life and now lives. However, her loving description of the life that Nicholas lives now, made possible largely in part by applying her general philosophies regarding support for people with disabilities in general, paint a picture of possibility and empowerment for both Nicholas and his family that needs to be recreated everywhere. Nicholas, who uses machines to breathe, eat and talk, chooses to spend most of his time in bed. After years of participating in adaptive sports and extracurricular activities at his schools and enjoying face-to-face contact with students his own age and his teachers, he now prefers the virtual worlds of his computer, his eBay business, online courses and the company of family and support workers. He can access all of these from his room and his bed, the physical space where he can remain most consistently free from the intense physical pain that still plagues him despite surgical interventions and heavy medication.  It’s perhaps not the life that you would choose. But it’s the life that Nicholas chooses. Thomson shows compellingly that this is what truly matters to her and should matter to us.

Anyone who works with people with disabilities knows that it’s no easy task, to assist someone who faces the challenges that Nicholas does to construct a life of their choosing. The joy of The Four Walls of My Freedom is Thomson’s seemingly unwavering faith as she and her husband raised Nicholas that it could be done, that it must be done, and that all people with disabilities must have the resources to effectively do it as well. To this end, she discusses new directions for planning and support policies, such as support facilitated through personal networks and individualized funding that is not dependent on government funding (her discussion of the Planned Lifestyle Advocate Network covers these topics extensively), income support mechanisms that allow people with disabilities to save money for the future (such as Ontario’s Registered Disability Savings Plan), and provisions by government, through changes in the tax code and in regulations surrounding residential placement options for people with severe disabilities, to allow carers to eventually retire and people with disabilities to access a greater degree of personal autonomy. It’s worth noting that she believes that these service innovations could also innovate and invigorate care for the elderly.

Thought-provoking, engaging, and very touching, The Four Walls of My Freedom shows us the next steps to ensuring that people with disabilities get the person-centred support that they need to have what the rest of take for granted: fulfilling lives, enriched by relationships and activities that we enjoy, with access to our communities in ways that we choose, with our safety and dignity reasonably ensured. In a just society, no one deserves anything less.

The Four Walls of My Freedom is available on Amazon everywhere. The paperback is due for release in May, 2012.

Donna Thomson's website:

Friday, 13 April 2012

Annette Corriveau Interview on "Dr. Phil" on Friday, April 13

It's 5:30 where I am, and I've returned to the blog today to update on the Annette 

Corriveau story. Annette Corriveau, in case you don't remember or haven't heard, is a mother of Jeffrey and Janet Collins, two adult children with San Filippo syndrome. They have severe physical and intellectual disabilities, and have been institutionalized for decades.

Annette Corriveau on "Dr. Phil"

For those for whom "Dr. Phil" still hasn't aired today, or for whom today's show appears on Monday, Dr. Phil is interviewing Annette Corriveau today. The segment uses quite a bit of footage from the "16x9" segment that the Canadian Association for Community Living (and I, for that matter) found so unbalanced. Since Dr. Phil tells his audience regularly that he reads the tweets that people leave him, I took the liberty of leaving him one telling him that Canadian disability advocates were particularly upset by how one-sided that piece of reporting on the Annette Corriveau story was.

Dr. Phil handled the interview (and the ensuing debate between a lawyer who felt that Corriveau should have the right to end her childrens' lives and a mother who definitely felt she should not) very well. He pointed out to Annette Corriveau that she was making assumptions about what Jeffrey and Janet could and could not feel and experience and what their decision would be about continuing life as they were. He said that he would not want to continue if he was in their place, but that they couldn't know what Jeffrey and Janet were feeling about it.

I was happy to see that he was supporting the rights of Jeffrey and Janet, who cannot speak for themselves. But I'd been paying attention to the statements to which the audience responded with applause over the course of the interview and debate. As Dr. Phil asked people to raise a hand if they thought that parents should have the right to end their child's life in a situation like Annette Corriveau's, I felt sick to my stomach, and it turned out that I had good reason to.

90% of the audience raised their hand. The mother who had been involved in the debate said, "Oh no..." and started to cry.

How are we supposed to make the world a place where people with disabilities feel welcome and valued, when we're up against this?

Dr. Phil message boards:

Thursday, 12 April 2012

YouTube Channel

The Girl With the Cane blog and the company with which it affiliated, Running Steps, now has a YouTube channel at .

I'm currently working on doing videos for all the posts on the blog and uploading them to the channel. Posts that have a video will have a link to their video. I'm doing this to help make the blog more accessible to people with a variety of disabilities.

There are 175 posts on the blog as I write this, so completing this project will take a while! But I believe that it's worth doing.

I've also subscribed to some channels on my own channel by individuals and agencies involved with disability work, so that their videos will appear in my channel's video feed. Some of them are very interesting. Let me know if there are channels to which you think I subscribe.

Temple Grandin, a woman with autism who is famous for her work with animals, subscribed to my channel when I subscribed to hers, which is very exciting!

Don't forget to check out the Running Steps webpage:

As always, thank you so much for your support!

A Downside to Closing Institutions?

The movement to close institutions for people with intellectual disabilities has a downside. Michelle Bach, executive-vice president of Canadian Association for Community Living told "The Globe and Mail" that housing is one of the largest issues for individuals with intellectual disabilities and their families. In Ontario alone,      12 000 people with intellectual disabilities are waiting for residential placements. Some have waited for decades, as their parents have aged and become less and less able to care for them.

Ontario put 1.7 billion dollars in the last year into developmental services and residential placements, but the  government throwing more and more money at the problem may not necessarily solve it, "The Globe and Mail" reported.

I Heart Closing Institutions!

For the record, I'm totally in favour of closing the institutions. Not just because they've got a horrific history of abuse and rights violations for the residents, but because by their very nature they put up so many barriers to having the residents participate fully in the community.  For example, when you've got a forty people in a building who want to go to church, doesn't it make more sense to bring in a priest to do a service than to arrange the transportation, staff, etc. that would be required to get forty people to a church service?

I learned in school that it's cheaper for the government to operate community homes in towns and cities than it is to operate institutions. Where is the money going from the completely closing Ontario's institutions? Some of it came with the people who left the institutions, of course - and, from I've seen in my community of the people who've come to live here as the institutions were closed, was put to good use - but I think I assumed that closing the institutions would leave the sector with funding above and beyond what came with the individuals, so that  agencies could explore more community-based residential options.

Not Necessarily Group Homes, By The Way

Other residential options have proven successful, even for people with people with disabilities that we'd have traditionally thought too severe to allow the person to have his or her needs met in a community setting, such as these Ontario programs:

  • Assisted Living (living in a facility, but independently in  a room or small apartment, with whatever access to support the person and facility agree upon).

  • Enhanced Supported Independent Living (living with roommates in a house or apartment with 24-hour access to staff).

  • Supported Independent Living (living independently with mutually agreed-upon check-ins with staff when support is needed)

  • Family Share (Paying rent to live with a family that's agreed to assist with support needs. Not a foster home environment)

Like I said, I remember hoping that there would be some more money for programs like these once the institutions closed. I also remember saying to someone, as the closure dates for the last institutions got closer, "I think it's a great thing, but I hope we're ready. I hope there are enough resources to go around."

Bring In Some New Ideas!

I think that it's a great (and necessary) thing that the non-profit sector is starting to develop ways of helping families to maximize their small amounts of  government funding to develop housing arrangements (and support arrangements in general). It represents a shift in how people with disabilities, their caregivers, and their support people  define, fund and use  "supports" that's long overdue. The journey may not always be comfortable, and will definitely push us into uncharted territory. But we owe it to the 73% of working-age adults with intellectual disabilities who are living in poverty, and the parents well past retirement age who can no longer handle the needs of adult children with intellectual disabilities but must continue because there's no other choice, to explore all the options.

More about this next week, when I review Donna Thomson's book, "The Four Walls of My Freedom".

Tuesday, 10 April 2012

Checking Myself: Ricky Gervais as Derek Noakes

When I saw that disability activist Nicky Clark had interviewed Ricky Gervais about yet another disability-related issue, I just...died a little inside. After the "Mong-gate" incident last year, where Gervais caused controversy by referring to his Twitter followers as "mongs" and pulling faces in his Twitter pics that made him look like a man with Down's Syndrome, you'd think that he'd just steer clear of everything disability-related. However, his latest television project. featuring Ricky Gervais as Derek Noakes, has got the lines buzzing again.

The Goods on Derek Noakes

"The Independent" describes Derek Noakes (whose first name is also the title of the show) as "a kindly but simple helper at a nursing home, who appears to have learning difficulties." Comedian Stewart Lee has described Derek Noakes as having "some superficial similarities to Down's syndrome." It's difficult to tell the extent to which Gervais plays Derek Noakes as a person with disabilities from the clips currently available on the Internet (the show doesn't debut on Britain's Channel 4 until Thursday). Gervais insists that he's never seen Derek Noakes as a person with disabilities, or he would have hired someone with disabilities to play him.

In the Words of Some "South Park" Character: "I Call Shenangigans!"

(Or, "I think that's bullshit", to those not familiar with South Park.) At least...I did at first. In light of Mong-gate, and the fact that Gervais' last show was about someone with dwarfism (drawing a lot of publicity, both positive and negative, for its treatment of people with dwarfism), he's just been getting too much attention for his views on disability and his feelings about offending people with his comedy about people with disabilities (all his comedy in general, really.) Since Gervais seems to be of the "even negative press is good press" school of public relations, of course it doesn't matter that he's received as much criticism as he has support. It's all attention, and it's all on him.

I was disgusted with this latest incarnation of it, quite frankly. As is my right, Mr. Gervais, by the way. You have the right to free speech. I have the right to be offended by what you have to say, no matter how much you insist that it's wrong that I am.


Ricky's comment to Nicky Clark about how if he said that Derek Noakes wasn't disabled, he wasn't, and then a subsequent comment about Sheldon from "The Big Bang Theory" got me thinking.

I've talked before about how my friends in social services and I are convinced that the Sheldon Cooper character in CBS' hit sitcom "The Big Bang Theory" has Asperger's syndrome, although it's never been acknowledged by anyone involved with the show. If someone involved with the show was to say, "Sheldon doesn't have Aspeger's. He's just...quirky," I suppose I'd feel that I have no choice but to accept that. I've never felt that his character has been particularly insulting to people with Asperger's because you could interpret him as having it. I actually quite enjoy the show, and the Sheldon character. It's funny that I'm willing to give the producers of "The Big Bang Theory" more latitude than I am Ricky Gervais with Derek Noakes and his new show. I may have to examine how much of this is really about Derek Noakes and how much of it is residual annoyance about "Mong-gate", which really did make me angry.

More about "Mong-gate": Nicky Clark's interview with Gervais:

"The Independent" article:

Stewart Lee's commentary:

More on "The Big Bang Theory":

Thursday, 5 April 2012

"Maintenance Effort" and Special Education in America

The special education budget in Ontario has been cut back further and further over several years, with very real effects of on the education of kids with disabilities. It's nice to see different special education spending guidelines in America, even if it looked like there were going to be changes this year. It's all about the obligation to meet "maintenance effort".

A Change at the Federal Level in "Maintenance Effort"

For non-Americans who don't know, education in the USA is managed at the federal level (as opposed to, say, Canada, where it's managed at the provincial/territorial level). Historically, American schools were required to meet maintenance effort when it came to American special education spending. Maintenance effort dictates that schools must maintain or increase what they spend on special education from year to year.

However, Education Departmentwas prepared to release schools from the responsibility to meet maintenance effort this year, without the fines that generally accompany a failure to meet maintenance effort for special education. The amount spent this year in a school would be its new benchmark for special education spending.

And Yet Another Change in Special Education Spending

In response to letter from Kathleen Boundy, a co-director for the Center for Law and Education, the Education Department has changed its mind yet again. Melody Musgrove, director of the Office of Special Education, has rescinded the early decision and declared that schools must go back to meeting maintenance effort. Which makes parent and advocacy groups very happy. But I'd like to let to let them in on a little secret that we've known in Developmental Services in Ontario for a long time (and I'm sure a lot of other Ministries in Ontario/Canada know as well).

Meet Me at Camera Three, Advocacy Groups

Maintenance is actually a cut.

I know that we're all dealing with inflation and rising prices and a bad economy.

Canadians and Americans need to keep on advocating for the funding that's going to allow us to keep on providing quality education for *all* children, not just children with disabilities.

But you know all that, don't you?

Giving Credit Where It's Due

Excellent job, parents and advocacy groups and attorneys and  Kathleen Boundy, on getting the decision on not meeting maintenance effort reversed.  Keep up the great work. It's a good day for special education in America.

For more information:

Have a great long weekend, everyone.

Britain's "The Undateables" Explores Disability and Dating

The Undateables  - I didn't know how to react. I've always found British television to be very edgy
and imbued with a humour that American and Canadian television just can't seem to replicate (for example, the British version of The Office, which predated the American version and is howlingly funny - and I'm a fan of the American version as well). Is naming a reality television show about people with disabilities trying to find love another example of this edginess? Or is it just a poor, poor choice of title for a show that's a step backward for people with disabilities?

Who are The Undateables?

I couldn't access clips from the episode that has aired already, but I read the descriptions of the three episodes that air this season. The first episode follows three people on at least one date:

  • Richard is an amateur radio enthusiast with Asperger's syndrome. He will only date women who live within a five-mile radius of his home, and won't eat on a date.

  • Luke, a stand-up comedian with Tourette's syndrome, is scared to date for fear that his disorder might cause him to call his date an insulting name.

  • Penny has brittle bone disease. A trainee teacher who has never dated, she is 3'4" tall. Her  ideal man is 6'0".

Future episodes of The Undateables include an amateur poet with learning disabilities, a skateboarder with facial disfigurements, and a student with Down's Syndrome.

Reactions to The Undateables

Many people, both with and without disabilities, found the billboard campaign that Channel 4 used to advertise The Undateables very insulting. The title of the show, and the implication that people with disabilities are "undateable" seemed a huge issue among the people that left comments on Channel 4's website about the show's first episode. However, most people seemed willing to at least watch it, and that's where the viewership became more divided. While the majority of commenters seemed to feel that The Undateables could be very useful in breaking down stereotypes about people with disabilities and dating, others argued that the show was humiliating for and exploitative of those involved , more focused on getting ratings through controversy than educating people about disabilities, and naive in its presentation of the issues that people with disabilities face on a daily basis.

Even the press seems divided. Samir Raheem of "The Guardian" used the word "ridicule" when talking about how The Undateables treated its participants in the first episode. From the way he described the episode, it sounds like I'd agree. The show apparently referred to the participants as "extraordinary singletons" and the dates with whom they were paired as "extraordinary people"; "In the world of matchmaking, people with disabilities can be a hard sell," Raheem reports the voice-over saying; finally, the show seemed to make it a point to pair the participants with other daters with disabilities (as if we can only date "within group"), or with people that would set the participant up for failure, such as the dater that found Luke's Tourette's funny and was disappointed when he didn't call her a name. For Luke, who believed that the Tourette's wasn't necessarily the problem, but more his extreme shyness around women, that's only going to cause a scenario that practically ensures that Tourette's would become an issue.  Read Raheem's entire review here of the first episode of The Undateables here:

Lucy Mangan of "The Guardian", however, felt that The Undateables was "kindly, thoughtful, and full of inadvertent comedy", and not at all exploitative. She felt that leaving in bits like Richard putting on far too much aftershave and then  explaining that "when you're going out on a date, you've got to be sure," was less patronizing than leaving them out. I disagree. It's one thing to have a camera follow you around on a date. It's quite another to have people point out grooming faux pas that, because of your disability, you might not realize you might be making, and include it in a matchmaking program. It *is* patronizing, and the role of people with disabilities in our society is not to make us smile nostalgically and say, "Wow, I did that once...poor bastard."

Which leads me up to things being inadvertently funny. I know from working with people with intellectual disabilities that they sometimes do things and have conversations where they don't mean to be funny, but are. It does happen. But the key there is, "they don't mean to be funny". So you don't laugh. Because no one likes to be laughed at because they misunderstood how to say or do something.  It's not "kindly" or "thoughtful".

Read Lucy Mangan's review of the first episode of The Undateables here:

The Undateables airs twice more in the UK. I'm hoping that it doesn't have a second season, let alone an American version.

Tuesday, 3 April 2012

Celebrating! Girl With the Cane Published in "Abilities" Magazine!

Now Appearing in "Abilities" Magazine...Me!

I'm in a happy mood today. I received the current copy of "Abilities" magazine in the mail, and the story that I wrote for it, The Online Dating Experiment, has been published!

"Abilities" is a Canadian lifestyle magazine for people with disabilities, published by the Canadian Abilities Foundation. CAF operates without core funding, using initiatives like "Abilities" magazine to "convene a forum for the exchange of information to promote an inclusive society and provide inspiration and opportunity for people with disabilities".

"Abilities" magazine in available in selected bookstores.

Sunday, 1 April 2012

Update on the Revised Diagnostic Criteria for Autism

The committee working on the revised diagnostic criteria for autism is standing by the changes they want made in the DSM-V, despite public criticism.

Concerns that the revised diagnostic criteria for autism will cause people to lose their diagnosis, and therefore supports, spurred the creation of an online petition that thousands signed.

Autism Rates Higher Than Ever

On the heels of CDC data that says that 1 in 88 kids has autism, one can understand why parents and disability advocates are concerned about the revised diagnostic criteria for autism. The DSM-V committee proposes that all diagnoses along the autistic spectrum, including Asperger's syndrome, be referred to as simply "autism spectrum disorder". A study by Yale university indicated that this could mean that people currently diagnosed with Asperger's or pervasive developmental disorder could lose their diagnosis, and therefore their supports. The American Psychiatric Association says that the Yale study is flawed, and that people don't need to worry.

Asking Tough Questions About Revised Diagnostic Criteria for Autism

Even if Yale's analysis is correct, I don't know that using the revised diagnostic criteria for autism will mean that people who already have a diagnosis will lose it. However, I do wonder if the revised diagnostic criteria for autism will mean that people who would have been diagnosed before May 2013, when the DSM-V is released, may not be diagnosed after May 2013. Not only would that be a very big deal for people and families that really do need support, it may change the 1 in 88 number that we are seeing today. It's an important number. Not because everyone who has it has an incredible uncomfortable life (see, but because some people with autism live with a very limited ability to interact with the world and with those who love them...and wouldn't it be nice if research provided them with ways to do that?

Shame on Research Funders

I remember reading a quote somewhere once, when autism rates were much lower and only the forms that made people very trapped in their own minds were generally recognized, that if one in whatever the prevalence was at that point children were being kidnapped, it would be a national emergency (implying that these children with severe autism were, in a way, being kidnapped and held from loving participation with their families by the severity of their diagnosis.) We know now that autism is not that severe for all people. However, it's just amazing to me that the only way the autism rates may possibly drop is to fiddle with the autism diagnostic criteria in a way that may change the number of diagnoses.

But...hopefully my fears will be unfounded and all people with autism will continue to get whatever support they need.

What do you think will happen?

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