“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 Melody Musgrove, director of the Office of Special Education, has rescinded the early decision and declared that schools must go back to meeting maintenance effort.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

Google’s Self-Driving Car: The First Test Driver

self-driving carIt doesn’t seem so long ago that we first got Internet access on our family computer, with the modem that was so slow that we couldn’t even see any images, and we were still the most Web-enabled people in the neighbourhood.  But that was actually 20 years ago. Now we can order pizza on the Internet, even in my little burgh, the kids that I worked with in my last job know more about Facebook than I do, and supergiant Google’s self-driving car technology may get people with low vision operating vehicles and on the roads like the rest of us.

http://www.pcmag.com/article2/0,2817,2402340,00.asp

There’s a video on this page of the car in action. It’s fascinating.

Google Strikes Again

Google didn’t design its self-driving car, a Toyota Prius, explicitly for people with low vision. Google has plans for a far greater market share than that, I imagine. A self-driving car could reduce or eliminate accidents across all demographics, by eliminating the need to drive while fatigued or distracted. However, Google recently chose to ask a person with less than 5% of his vision to test drive one of the self-driving cars. The gentleman found the ride very enjoyable, and speculated on how a self-driving vehicle would greatly increase his independence.

The Self-Driving Car – Not Just for Blind People

The self-driving car wouldn’t just benefit people whose disability is low vision. People who have low movement in their limbs or who have certain types of seizures may be able to benefit from self-driving car technology. Perhaps even people with hearing and/or speech impairments could benefit as well, but I’m not certain. I’d need to know more about how the car works.

At any rate, it’s a fascinating development, and it will be interesting to see whether Google does choose to market the car heavily toward people with disabilities. Even though self-driving cars are currently legal in Nevada, the Google car still needs extensive testing. It won’t be on the market for quite some time.

Podcasts Now Available

I’m experimenting with a plug-in called Odiogo, which produces podcasts of my posts. You can even subscribe to them on iTunes using the “Listen to Posts” button on the right side of the screen,

The plug-in is by no means perfect. I thought that I would be able to record the podcasts myself, but a male, computerized voice reads them. It’s not bad, as far as computerized voices go, but some of the nuances get lost.

I’m hoping that it will do until I can find an alternative, though. Thanks for your patience.

Sarah

“Disturbingly One-Sided” – Annette Corriveau and the Right to Kill

I wondered why I was hearing Robert Latimer’s name recently. It turns out that on Friday there will be vigils around the United States, in cities including New York, Washington, Chicago, Boston, Tampa, Fla., Fort Worth, Texas and Portland, Ore.,  for people with disabilities who have been killed by their caregivers. But it’s been the profile of Annette Corriveau on “16 x 9”, a program run on Canada’s Global Television Network, that’s put Latimer (and the question of “mercy killing” for people with severe disabilities) in the spotlight in Canada again.

Content Warning:  Parent killing disabled child, parent fighting for right to kill disabled children, institutionalization, ableism

Large yellow happy face icon, with a lopsided frown and furrowed eyebrows. Keyword: Annette Corriveau

Image Desciption: Large yellow happy face icon, with a lopsided frown and furrowed eyebrows.

***

For those that don’t know Robert Latimer, he was convicted of second degree murder when he put his daughter, Tracy, in the cab of his pick-up and killed her using carbon monoxide. Tracy was twelve years old and had severe physical and intellectual disabilities due to cerebral palsy. Robert, convinced that she was in unendurable pain, said that he didn’t want her to have to deal with it anymore. Normally a second degree murder conviction carries a life sentence in Canada, but he was released from prison with life on parole in seven years.

Annette Corriveau, according to “16 x 9”, is very much where Latimer was when he made the decision to kill Tracy. She wants to right to kill her two adult children, Jeffrey and Janet, both living with severe disabilities due to San Filippo syndrome and institutionalized for most of their lives. She made the decision that this is what she wanted to do when it became necessary to feed them via feeding tube so that they won’t choke. She doesn’t believe that they would choose to live like this, so she would like the legal right to end their lives.

Annette Corriveau and Robert Latimer Got to Speak…

I get that it’s very difficult to watch your child’s health and abilities keep deteriorating, especially when they’re in pain. Tracy was having seizures that routinely disconnected her hip. It had to have been terrible.

And I know that there’s little support in every way in Canada for caregivers of people with disabilities. There’s very little respite money or opportunities available. Supports are being cut back everywhere. The struggles are difficult to talk about. It’s a tough, often thankless job.

Additionally, for parents who are looking after children with severe disabilities, there’s always that mourning for the dreams that they had for the child. That’s why I’ve always liked “Welcome to Holland”, a story with which I’m sure many of you are familiar.

I recognize that this sort of parenting is very difficult, and empathize with the parents. However…

Who Speaks for Jeffrey, Janet and Tracy?

The “16 x 9” profile was, as anti-euthanasia activist Alex Schadenberg said, “disturbingly one-sided” . It was riddled with ableist language and assumptions. The staff that work with Jeffrey and Janet on a daily basis, that would be able to testify to the ways in which they communicate, were not interviewed.  The reporter did not challenge Annette Corriveau at all on her conviction that her children do not want to live the way they are (just because she felt that she would not choose to live if she was living that way), or ask if she’s worked with the facility in which they live to take steps to make their lives more “bearable”.

For example, it was brought up several times that Janet has not left the facility in over 20 years, but the reporter never asked Annette Corriveau if she’d worked with the facility to try and arrange some trips out into the community.

The documentary obviously took the stance that what had happened to Jeffrey and Janet was horrible and that no one could blame Annette Corriveau for thinking the way she was, like she was the victim of some cosmic tragedy that no parent should have to endure…and therefore jusified in stopping her pain in whatever way she could.  After all, as the reporter pointed out, more than half of Canada and most of the jury actually supported Latimer’s actions while the trial was going on.

I find all of this profoundly disturbing.

Reporter: “Is any of this about you?”

Listening to the interview with Annette Corriveau, and the interview with Latimer that was included in the segment, I had no doubt that these parents love their children. But I don’t buy that Latimer killed Tracy (at least solely) to ease her pain, or that Annette Corriveau wants to kill her children out of concern that they wouldn’t want to live that way. I think it’s more about parents that can’t stand dealing with the pain that their childrens’ “suffering” causes *them*. And when you don’t know how much someone is actually suffering, or what they’d like done about it (in Tracy’s case, at her age, no responsible clinician one would even have thought of asking her “Do you want to die?” if she’d not had an intellectual disability)…it’s just plain wrong.

Ask, don’t assume.

All people deserve the dignity of making their own life choices. No matter how *you* feel about what living their life must be like.

I can only be empathetic with the Robert Latimers and Annette Corriveaus to a point, and frankly I’m glad for it.

The whole “16 x 9” segment is available for viewing here

See the Council of Canadians with Disabilities’ response to the program

 

 

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I Don’t Need Easy – Julianna Russell

I love working with teenagers. Granted, sometimes their behaviour sometimes frustrate the hell out of me, buJulianna Russelllt we need to remember that even in the healthiest of teenagers, their brains don’t fully develop until their mid-twenties. It makes the achievements of teens like Julianna Russell stand out even more.

Julianna is another person whose achievements need celebrating this International Developmental Disabilities Month. Born with spina bifida, at age 16 she discovered that she didn’t have enough feeling in her legs to operate the pedals in a car. However, determined to get her driver’s license, she researched her options on the Internet. After taking an adapted driving course and having her car outfitted with hand controls, she was able to get her license.

She also started her own website, I Don’t Need Easy, to share with other youth with disabilities how she did it and to give them a place to network and share other experiences of growing up with disabilities.

http://www.ledger-enquirer.com/2012/03/25/1983570/teen-creates-website-to-help-other.html

Relating to Julianna Russell

When I read Julianna Russell’s story, I thought she was wonderfully brave.

I got my driver’s license at 16 without any problem. But after my brain surgery, I started having seizures. The surgery left some scar tissue that just sent my brain into spasms. The first little while they were large seizures that came on with little warning (although I could usually say within a couple of days that one was coming on) and caused me to lose consciousness. Gradually, as my doctors fine-tuned my medications, the seizures became rarer and rarer – but I’d be awake through them as they happened. Eventually they became tremors my arm or leg so small that no one but me knew that anything was happening. It was at that point that my neurologist declared that I could start thinking about driving again, and wrote a letter to the Ministry of Transportation for me.

But by that point I’d been over a decade without a license. It was a terrible drain on my independence, yes. My town had no public transportation. I had to rely on taxis and the good nature of others to get anywhere outside of town. Having no license put me out of the running for most jobs in social services in the area. But I sat on the letter and the opportunity to start getting my license back…for far too long…and I’m not really sure why.

I knew I’d have to start all over again after such a long period without driving, but that didn’t *really* bother me. Something else was holding me back and, like I said, I’m not sure what it was. I have the first stage of my license now, though, and will be able to take my full driver’s test in February 2012.

But I can relate to wanting the independence of being able to drive oneself around, instead of relying on other people. Kudos to Julianna Russell for finding a way to get her license and for using her talent and abilities to share with others how she did it! I actually used her site to investigate adaptations to car steering wheels.

I Don’t Need Easy

Julianna Russell’s website is here: http://hstrial-dischallenges.homestead.com/index.html

It’s obviously just getting started, and hopefully she’ll get some more people post some stories. But for people (not just necessarily teens) with disabilities that want to drive and the people that are going to be helping them, it’s a good place to start getting information. Great job, Julianna Russell! Keep it up!

 

My AVM Story: Little Springs

I admit it. I’m still celebrating spring.  It may be snowing on parts of the West Coast, but (for the moment) it feels like summer here.Curves gym

This is an essay from my 2006 book, “Run, Run Because You Can” about winter, spring, and recovery. Happy Friday!

Little Springs

Winter is long. It feels longer.

The snow blows long and hard, and sometimes freezing rain upgrades the walking conditions on the sidewalks from “somewhat dangerous” to “treacherous”.  For a person like me, who for a long time after the stroke relied on walking as my only form of cardiovascular activity, winter seemed the kiss of death to anything resembling an active lifestyle.  And as my weight continued to creep up and up, while my body got more and more able to move and stay upright on its own, I began to get restless.

A number of women I knew in the community had joined a Curves gym.  I had seen commercials for the US-based chain on television, and knew it was an all-female gym.  Members did a circuit of alternating cardiovascular activity and hydraulic strength training on machines in 30-second intervals for half an hour.  I asked around about the Curves gym, heard nothing but glowing reports, and was given a guest pass by a friend.

I didn’t think that I’d be able to get in and out of those machines that I’d seen on the commercials for Curves Gym, but I figured that even going in and doing some sort of cardio would be beneficial.  So I went in to the Curves gym in my community and talked to the owners, Kelly and Heather. Kelly took me through the gym, cane and all, patiently helping me in and out of (almost) all the machines to show me how they worked, while the other ladies who were working out smiled and just moved around me if they had to.  Kelly suggested that I avoid only two of the machines at first, for safety reasons, but was confident that I’d use them eventually.  She didn’t seem daunted at all by my medical history.  She merely suggested that I work out with supervision for a while to be sure that I didn’t fall, and even gave me a free month to see if the Curves gym was going to meet my somewhat specialized needs.

I went two times a week for a month, and joined.

Being able to move like that again, to swing my arms and move my feet to music and use the rhythm of the machines to make my arms and legs strong again, was one of the best things that anyone could have given me at that point in my recovery.  It wasn’t long before I was exercising without supervision, and even using one of the machines that Kelly had originally suggested that I hold off on.

Kelly and Heather had told me not to necessarily expect any benefit in terms of physiotherapy from my exercise at the Curves gym, but I saw them; my strengthened muscles made me faster, steadier, and that in turn made me move with more confidence.  And for the first time in my life I was becoming physically fit – even more so than I was before the stroke.

But there was still that one machine that I couldn’t use. I just didn’t have the physical dexterity to get into it, and my weak foot would not stay in proper position once I was there.  So I skipped the machine, doing extra reps on other leg machines to compensate.  It was a matter of acceptance – just as there are some days in the winter when the sidewalks are simply too dangerous for walking (for me, at least), there was a machine at the Curves gym that it wasn’t really safe for me to use.  No big deal.

However, one April day, Kelly came out of her office and looked at me thoughtfully.  “You wanna try the leg press today?” she asked.

“I don’t think I can get into it,” I said.

“I’ve been watching you, I think you can,” she said.  “Come on, I’ll walk you through it.”

And she did.  And I did, beating ten months the two years that she and Heather had expected me to take to conquer all the machines.

Curves gym was giving out that day, of all things, packets of wildflower seeds.  It was Spring, but still too early to plant anything outside, so Kelly suggested we plant in the seeds window boxes for now and move them outside later.  On the way home I stopped at the hardware store and bought medium-sized clay pots and a tiny bag of potting soil.  I just about put my back out lugging my purchases up the hill to my apartment.  But it was worth it to sit on my floor, hands in the soil and gratitude in my heart, celebrating all the little Springs in my life.

More about Curves gym:  http://www.curves.com/