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.The Four Walls of My Freedom 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: http://donnathomson.blogspot.ca/p/welcome.html

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 

annette corriveauCorriveau 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 “16×9” 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: http://community.drphil.com/boards/?EntryID=31912

YouTube Channel

The Girl With the Cane blog and the company with which it affiliated, Running Steps, now has a YouTube channel at http://www.youtube.com/user/runningsteps .

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:  http://www.runningsteps.ca/

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, institutionsexecutive-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.

http://www.theglobeandmail.com/news/national/for-those-with-intellectual-disabilities-a-decades-long-wait-for-a-home-and-care/article2397837/page1/

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”.

Checking Myself: Ricky Gervais as Derek Noakes

When I saw that disability activist Nicky Clark had interviewed Ricky Gervais about yet another derek noakesdisability-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.

However.

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”: https://www.girlwiththecane.com/ricky-gervais/ Nicky Clark’s interview with Gervais: http://nickyclark.blogspot.ca/2012/04/ricky-gervais-talks-about-derek-karl.html

“The Independent” article:  http://www.independent.co.uk/arts-entertainment/comedy/features/mock-the-disabled-me-ricky-gervais-on-how-he-has-been-misunderstood-7621909.html

Stewart Lee’s commentary:  http://www.guardian.co.uk/commentisfree/2011/nov/13/stewart-lee-comedy-offensive-gervais

More on “The Big Bang Theory”:  http://the-big-bang-theory.com/

“Maintenance Effort” and Special Education in America

maintenance effortThe 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: http://blogs.edweek.org/edweek/speced/2012/04/feds_back_off_of_letting_distr.html

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

The Undateablesand 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:

http://www.telegraph.co.uk/culture/tvandradio/9183670/The-Undateables-Channel-4-review.html

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: http://www.guardian.co.uk/tv-and-radio/2012/apr/03/the-undateables-horizon-tv-review?newsfeed=true

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

Celebrating! Girl With the Cane Published in “Abilities” Magazine!

Now Appearing in “Abilities” Magazine…Me!"Abilities" magazine

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.

Update on the Revised Diagnostic Criteria for Autism

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

Concerns that the revised autism diagnostic criteria 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 autism diagnostic criteria. 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 Autism Diagnostic Criteria

Even if Yale’s analysis is correct, I don’t know that using the revised autism diagnostic criteria will mean that people who already have a diagnosis will lose it. However, I do wonder if the revised autism diagnostic criteria 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 https://www.girlwiththecane.com/category/running_stories/dsm-v-changes-to-autism-criteria/), 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?

More about this story:  http://www.disabilityscoop.com/2012/03/28/dsm-standing-firm-autism/15266/

Canadian Association for Community Living Complaint about Annette Corriveau Story

The Canadian Association for Community Living (CACL) wrote an open letter of complaint on March 30 to GlobalCanadian Association for Community Living Television regarding it’s “16 x 9” program. Specifically, CACL was upset with reporting in a segment in a episode of “16 x 9” regarding Annette Corriveau, and whether family members should have the right to take the life of a person with severe disabilities.

The Canadian Association for Community Living’s Concerns with “16×9″‘s Annette Corriveau Segment

CACL is one of the largest support/advocacy agencies for people with intellectual disabilities for people with intellectual disabilities in Canada. It oversees a network of ACLs at the provincial level, which in turn oversee ACLs in most cities and towns. I read the CACL’s letter to Global, and their concerns about how Annette Corriveau’s fight to have her disabled adult children killed run along the same lines as mine (https://www.girlwiththecane.com/annette-corriveau/). I’m glad that an organization with their influence is speaking up.

The full text of their letter to Global is here:  http://www.cacl.ca/news-stories/blog/open-letter-and-formal-complaint-global-tv-biased-damaging-media-coverage