Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts

8.22.2015

wheelchair rugby finals, parapan am games 2015

The 2015 Pan Am Games and Parapan Am Games were held in Toronto and the GTA this summer. Although I regard these events as a ridiculous waste of money, a very bad deal for residents of the host cities, there was one very bright upside for me: the opportunity to see some disability sports, nearby and at a very high level of play.

Mississauga hosted wheelchair rugby and goalball. I saw goalball at the 1996 Paralympics in Atlanta, and it is a unique and thrilling sport, played by blind athletes. Wheelchair rugby is irresistible, as millions have discovered through the excellent documentary "Murderball".

I couldn't get to goalball, but I snagged good seats to the wheelchair rugby finals, which eventually sold out. I went with a friend who had never seen - or even thought about - wheelchair sports before. When we got to the arena, we learned that the gold medal game was between the US and Canada, the same teams that face off in Murderball.

Bronze medal game: Colombia vs. Brazil

In the bronze medal game, Colombia played Brazil. The game started with dull, lacklustre play, not at all what we expected. It looked more like a trial game in a rehab centre than elite international play. But gradually, speed and strategy picked up.

One Colombian player began to dominate the court, not with size or strength, but with agility and finesse. (I think it was Jhon Orozco Nunez, wearing number 4, but I'm not positive.) He used his torso to pivot and swivel and wind his way through openings. The crowd noticed him and began to cheer his every move, and his game came on stronger and faster. By the last quarter, the stands were packed, and every time #4 touched the ball, the crowd went wild. (Also, Brazil had been cleaning up in the medal count, so many people were cheering against them, for the underdog.)

Brazil ramming crowd favourite #4
Despite our favourite #4, the teams were well matched, and the score was neck and neck throughout. In the end, Colombia won the bronze medal: final score 50-48.

Gold medal game: USA vs. Canada

By the time the gold medal game started, the stands were completely packed, a sea of Canada red with the occasional Stars and Stripes visible here and there. The North American players were noticeably bigger and more athletic looking than the South American players. My friend and I were both struck by the difference, leading us to speculate about the difference in healthcare, rehab opportunities, even nutrition and education. Most wheelchair athletes must travel in order to practice and play in tournaments. Depending on where they live, their opportunities to actually play their sport may be very limited.

The game was wild. The US took an early lead, with Canada playing catch-up right from the start, down four or six points. The American team was so strong, we felt that if Canada fell further behind, it was cooked.

Canadian Zak Madell
Just as #4 emerged as the crowd favourite in the bronze medal game, Canadian Zak Madell, wearing #33, quickly established himself as the dominant player. He seemed to either score or assist in every goal. Once he touched the ball he was virtually unstoppable, at one point frustrating four defenders to score. But every time Canada scored and threatened to tie the game, the US would edge further ahead.

Madell with the ball, as usual
In the third quarter, Canada finally tied the score, and the crowd went insane. The score seesawed back and forth, each team squeaking out a goal, then the other team answering with a goal of their own. Finally, with the crowd roaring, Canada took the lead in the fourth quarter, and held it throughout, winning the gold with a score of 57-54.

I ducked out before the medal ceremony, as it was already late and I was working the following morning, which gave me an out from the national anthem issue. (It looks very disrespectful when I sit for the Star Spangled Banner, then stand for O Canada.)

The gold medal wheelchair rugby game was the highest level of play I've ever seen in a wheelchair game. I took a ton of pictures, which are not very good - partly because I was not on the sidelines with a huge lens like the professionals, and partly from my inexperience with sports photography. But if you're interested, they are here.

6.29.2014

things i heard at the library: an occasional series: #14

One of our regular Readers' Den customers approached me with her usual long list of movies. She researches movies online, prints out lists, and comes to the desk to see what we have in our collection. Anything we have, we place on hold for her.

She's a great customer, in terms of library use. She has an intellectual disability, and sometimes helping her can be a bit of a challenge. 

This customer talks very fast, and a little too loudly. While you're searching for one item, she's rattling off the next few, so after placing each hold, you must ask her to repeat the next title. Because she's reading from a list, the effect is a constant stream of chatter, from which you must pick out the movie titles.

After we had exhausted her movie list, she asked, "Is there a way I can do this myself, put on holds, from home?"

I know she uses a computer to research movies, and I know she checks her library account online to see which holds are available. I told her, yes, definitely, she can do this from home, and I'll show her how right now. She made some self-deprecating remarks. It was apparent that the prospect of learning something new was stressful for her.

We went to one of the public catalogue computers. I asked her if she knew how to log in to her own account, and she did that with ease. I asked her to search for a movie title, and she did that. Then I showed her how to place the item on hold. We did that a few times, and then she started talking.

"Want to hear a really sad story?" she asked. On the radio, a woman was talking about her son, a teenager. "He's like me," the customer said. "He's slow." At school, instead of being in class, the boy was working in the cafeteria, and washing teachers' cars. His mother didn't know. He was afraid to tell her, fearing he would get in trouble for skipping class. None of the teachers came forward to tell the boy's parents. Another special-needs student told her parents, who told this woman. 

Her son was being used as a slave. He was being deprived of an education, and working, without pay. Pretty clear human rights violations. Teachers and school administrators allowed this to go on - later, of course, claiming ignorance.

The customer said, "I thought those days were over. When I was in school, they used to call us re-tards, they kept us in a special class, they didn't teach us anything, they thought, why bother to teach these re-tards. But I can learn. I can learn. It just takes me more time. My brother taught me to use a computer." Then she said, "I could teach this boy. I wish I knew him, I would teach him, I would show him that if I can learn, he can learn, too."

I was struggling to maintain some professional distance, to avoid tears. 

Later, I looked for the story online, but realized it was not necessarily recent. The customer might have heard this story anytime. Because she identified so strongly and felt so compassionately towards the boy in the story, the story remained fresh to her. 

I wondered, too, about her earlier self-disparaging remarks, wondered what had ingrained anxiety and fear so deeply that the mention of learning - anything - triggered that response. 

* * * *

Back at the information desk, I learned from a colleague that some staff find this customer somewhat annoying. I don't at all, and the colleague who shared this with me - who also loves movies and enjoys helping this customer - doesn't either. She reminded me that we all have our own irritations, different buttons that customers unknowingly push. 

I would like to take this more generous view of my co-workers... but I can't. Bias against people with disabilities is rampant. I feel so strongly about our library being accessible to as broad a range of people as possible, and I see how this customer needs us. Hearing that some staff dislike her raised my hackles.

I later wondered if perhaps the customer already knows how to place holds, and perhaps just wanted to extend our interaction. Or perhaps she knows how to search the catalogue but is still wary of taking another step. Either way, it's okay with me. That's what we're there for.


3.09.2014

kind of a not-funny story: ned vizzini, youth fiction, and suicide

It's so hard to talk when you want to kill yourself.

That's the first line of Ned Vizzini's excellent 2006 youth novel, It's Kind of a Funny Story. By the time I read the book this year, the author was already dead. Vizzini committed suicide last December; he was only 32 years old.

Those facts alone are tragic. But now that I've read this book, I find Vizzini's death even sadder. On some level, I chide myself for that: every person's life is of equal value, and every early death is a loss. But we feel the way we feel, and Vizzini's suicide feels, to me, inexpressibly sad, a monumental loss.

Vizzini wrote youth fiction in a natural, straightforward voice, with deep insight and wry humour. It's Kind of a Funny Story is a slightly fictionalized account of the onset of the author's depression as a teenager, and the five days he spent in the psychiatric unit of a hospital in Brooklyn, New York. It's a funny book, often poignant, sometimes very moving, always very honest. It's an excellent book, and was made into a very good movie in 2010.

Vizzini's work touched the lives of millions of young people. We can be sure that untold numbers of teens and young adults with depression recognized themselves in Craig Gilner, the intrepid narrator of It's Kind of a Funny Story, who is trying to save his own life, trying to believe that his life is worth saving.

Vizzini was a very talented writer, and was hugely successful. He found the kind of success as a youth author that I used to dream of - that I worked very hard for, but did not achieve. It's easy to speculate that Vizzini's early success contributed to his depression, but I think those easy answers are just as easily wrong. He was depressed. He sought help, he got help, but eventually his depression overwhelmed him. This happens to successful people, and it happens to people whose depression prevents them from ever achieving success. It happens to talented people, and it happens to ordinary people. For every Ned Vizzini, David Foster Wallace, and Anthony Lukas who kill themselves, there are thousands more, whose names we never know.

Suicide is called many things: cowardly, selfish, crazy. I find all of these judgements strange, and wrong. One of my little missions is, when I hear or read someone speaking ignorantly about suicide, to  always counter with a more compassionate perspective. Empathy really shouldn't be too difficult: imagine being in so much pain that death seems like the only option.

There is another thing about suicide: shame. In most western countries, suicide is among the three leading causes of death of people between the ages of 15 and 44, and the second leading cause of death between ages 10 and 24. And these figures do not include suicide attempts, which are much more frequent. (Figures from WHO and NIMH.) Most of those deaths also represent survivors: the loved ones left behind. I know many people whose lives have been touched by suicide, including my own and my partner's. Yet it's still rarely spoken of. Many families still change the cause of death in obituaries and fabricate stories for family history. Attitudes about mental illness have changed and are changing, but the stigma associated with suicide speaks to how much work remains.

I wish Ned Vizzini was still here to write more great teen novels, or to do whatever else he wanted. I hope his work has made life a little more bearable for some of his readers.

7.28.2013

what i'm reading: the fault in our stars, a truly great novel for youth and not-youth

I am in the middle of reading The Fault In Our Stars by John Green, a book almost too painful to read but impossible to put down. It's achingly funny, profoundly insightful, and utterly heartbreaking, all at the same time. The Fault In Our Stars is supposedly a youth novel, but please don't let that stop you from reading it. It is simply a wonderful book.

Hazel has cancer, and her life expectancy is short. Augustus is a cancer survivor, and has the prosthetic leg to prove it. Hazel and Augustus, two smart, funny, and otherwise ordinary teenagers, fall in love.

How do you cope with cancer as a teenager? How do you cope with love when you have cancer? How do we humans love when we know that our loved one will one day die? Why are we so helpless when our loved ones are in pain? Hazel and Augustus live through all the universal questions of love and loss, and all the universal questions of adolesence, all at once, and with a pronounced urgency. If that sounds sad, it is. But it's also witty and irreverent and funny, and wonderfully sweet, although never sentimental.

Indeed, The Fault In Our Stars is anti-sentimental: it is something of a fiction version of Bright-Sided, skewering society's standard responses to cancer, especially to sick children. Green digs deeper to expose the guilt, the fears, the isolation, and the other-ness faced daily by young people with illness and disability. I found these moments searing in their accuracy.

At the same time, Green reveals the love and joy that might be otherwise obscured by our sadness and sympathy.

The story is narrated by 16-year-old Hazel, and the voice feels unerringly authentic. Hazel Lancaster joins Roddy Doyle's Paula Spencer as Exhibit A in the Good Writing Knows No Gender proof.

When I put this book on hold at my library, there were more than 200 people waiting to read one of the 30 copies in the system. IMDB tells me that the movie adaptation will be released next year. I hope John Green makes a big pile of money and continues to write such masterpieces.

6.21.2013

wmtc rebooted

I was in the middle of writing a post about my plan to get back into an exercise routine... when I broke my foot. Doing almost nothing. Walking along in the mall, on my way to get my hair cut and then go to work, my ankle turned over sharply. I was horrified, thinking it was yet another ankle sprain. But no... turns out it's a three-part fracture in my foot.

I was worried at first: if I could break a bone just by walking, is there a problem with my bone density? Are my bones becoming fragile? But I've learned that fractured foot bones are very common among people who have a history of ankle injuries. Every time your ankle turns over, a ligament pulls at those small, friable bones in your foot, weakening them. This was an accident waiting to happen.

I was very sad and frustrated at my ruined plans to be more physically active. But before long, those feelings were replaced with relief that this happened after our trip to Spain and not before.

I'm in a walking cast, like a ski boot, so as far as fractures go, I'm pretty lucky not to have the inconvenience of a plaster cast. I spent a good portion of my early teenage years on and off crutches, an experience that permanently changed my perspective on life. Now, hobbling around the house with a cane, I'm remembering what it's like to be less mobile, to have one or both hands used for stability so you can't carry things, how long it takes to get things done. We live in a house with three floors and no bathroom on the ground floor, so life will be a bit more challenging for a while.

* * * *

This is another opportunity for me to praise Canada's excellent public health care system, and to remind us that Ontario's coverage should be further expanded, not continually reduced. My doctor took x-rays, found the fracture, and sent me to Urgent Care, where (after a wait), I was fitted with a temporary plaster cast, and given instructions about visiting the Fracture Clinic the following day. At the Fracture Clinic, I was seen by the orthopedic surgeon on duty, a specialist who does nothing but treat fractures. They gave me the walking cast, scheduled a follow-up appointment, and here I am.

This would have all been "free" - paid for by our taxes - but Ontario covers only plaster casts. Walking casts are out-of-pocket. If you have supplemental health insurance, you're reimbursed, and if you don't - as is increasingly the case - you're on your own. The friendly technician who made my temporary cast said that some people opt for plaster because they can't afford, or don't want to pay for, the walking boots. That's wrong. Everyone should have the same options, regardless of ability to pay. I'm sure in some cases this is regardless of desire to pay, not ability, but I don't like to see that two-tiered system creeping in. I'd much rather my taxes fund someone's increased mobility than fighter jets or worse, the Conservative Party's slush fund.

* * * *

Now, time suddenly has been returned to my life, time in which I had been planning on walking, hiking, swimming, or doing exercise classes on Roku. This seems like the perfect opportunity to write. If I'm successful, this blog will again reflect something other than my own small corner of my world.

2.13.2013

marxism 2012 program notes: from each according to their ability: the role of socialists in disability movement

This is the final post of my notes from the 2012 Marxism Conference. This was the first Marxism conference to include a talk on disability, an exciting development full of potential. I wanted to blog about it in great detail. A friend was recording the talk, so I stopped taking detailed notes... and then the audio didn't come out.

Melissa Graham was kind enough to give me her notes, but the others didn't have anything written to share. What follows, then, is the general idea. What does disability have to do with capitalism and socialism? Where do disability and socialism intersect, how do they relate to each other?

* * * *

From Each According to Their Ability: the Role of Socialists in Disability Movement
May 25, 2012
Melissa Graham, Michele Macaulay, Patricia Reilly

Melissa Graham
Member of IS Canada, Social Worker, Disability Rights Activist, Wheelchair User

Melissa began by praising Marxism 2012 for being the first of the annual conferences to include a talk on disability, but emphasized that radical activism within the disability community is nothing new.

In the UK, the British Deaf Association and the National League of the Blind and Disabled were both radical groups. The NLBD was founded as a trade union in 1899. Members included blind war veterans, mainly working in sheltered workshops, who campaigned for better working conditions and state pensions. The league organized a national march of blind people on Trafalgar Square in 1920, carrying banners with a new slogan: "Rights Not Charity". Despite the small numbers, its aims were widely supported. The first legislation specifically for blind people was passed in the same year, followed by more in 1938.

Much later, in the 1960s, many people with disabilities started to reject being labelling as deviants or patients, and to speak out against discrimination. Inspired by many social movements, especially by the US black civil rights struggle, the disability movement really began in the US.

One example of this shift was the "Rolling Quads", a group of student wheelchair-users at the University of California Berkeley, who established the first Independent Living Centre in 1971. Within a few years, hundreds more ILCs were created across the US and other countries, including Canada. The Independent Living Movement opposes institutionalization and stresses self-reliance; through this, it has had a lasting influence.

These days the movement has shifted again. With the development of the Accessibility for Ontarians with Disabilities Act (patterned after the US's Americans with Disabilities Act), many organizations that were once active advocates now take their direction from government legislation, while they fight each other for funding. While there are individual activists rising to the challenge, the movement is still divided by disabilities and class.

Image from PeaceNews
The disability movement, said Melissa, needs to rebuild its history, to get in touch with its radical roots. The first-ever Disability Pride march in Toronto took place last year, calling attention to how austerity budget cuts disproportionately affect people with disabilities. The government thinks people with disabilities are compliant and quiet, and will swallow the cuts quietly.

Accessible transportation is a huge issue for people with disabilities, and an enormous obstacle to organizing. During the recent struggles in Quebec, many students with disabilities were afraid to strike, afraid of losing their grants. Many people with disabilities work for agencies funded by the government, and are afraid they'll be targeted and fired if they agitate.

The recession in the UK has hit disabled people hard. Massive cuts to public spending further reduce already inadequate - but vital - disability benefits. The cuts hit all working-class people; understanding disability discrimination can play a part in uniting resistance to the attacks.

All struggles for freedom from oppression share common ground with Marxism. Ironically, a primary source of oppression of people with disabilities is their exclusion from capitalist exploitation. Many disabled persons are unemployed or underemployed against their will. Their non-conforming bodies are deemed less (or un-) exploitable by the owners of the means of production. The ideal worker is one whose body can work like a machine for the ruling class.

On the other hand, people who receive disability benefits are routinely portrayed as cheats and freeloaders. Even though it's been shown that fraud accounts for less than one percent of benefits - and even though the benefits themselves take up a minute portion of the overall budget - the media and conservative governments create a perception of rampant fraud and waste. Melissa quoted a study in Glasgow showing that people in focus groups believed 70% of disability claims were fraudulent.

The UN Convention on the Rights of Persons with Disabilities (of which Canada was one of the last countries to sign) creates a paradigm shift: from charity to rights and inclusion. There is a very real fear that current and future austerity measures will drastically infringe on the rights contained in the CRPD - including social protection (Article 28), the right to live independently in the community (Article 19) the right to mobility (Article 20).

The European Disability Forum has been compiling data from across Europe on the impact of austerity budgets on people with disabilities. Cuts are affecting people's lives in very real, very scary, and very permanent ways, affecting people's ability to live independently. The cuts also contribute to negative stereotyping of people with disabilities. The language and messaging - describing disabled citizens as "expenditure items" and "drains on economic efforts" - further contributes to stigma and exclusion.

And yet in the UK and Canada, people with disabilities are better off than in many other places in the world, a very sad commentary. In many countries, people with disabilities live in a de facto state of apartheid. They are forced to the fringes of society, ostracized from things that many of us take for granted, such as getting a job or taking public transit.

So what can we do as a movement? Build connections. Reach out to people we see doing activist work, and connect with them through related struggles. One of the biggest barriers people with disabilities faced is isolation. Even when groups of people with disabilities do become active, it is rare for allies to reach out.

Melissa is a great comrade with a lot of energy and a wry sense of humour. You can read her blog here: B-tch on Wheels.

Michele Macaulay
Psychiatric Consumer Survivor

Michele described how the neoliberal governments of the past ended or defunded the office of psychiatric advocates in hospitals. Now there is no one in hospitals to ensure that people with mental illness are not mistreated, or retraumatized, or denied access to services they need.

The health care system is completely inadequate when it comes to mental illness. She described the attitude as "be quiet and take your meds". Michele spoke briefly about the anti-psychiatry movement, which I also heard about in this talk.

Lack of mental health services disproportionately impact low-income communities, racialized communities, aboriginal people - people dependent on the public system with no resources to opt for private care - and people who the dominant culture would rather not deal with. She described the anti-psychiatric movement as an "equity-seeking movement," with much in common with other people's movements.

Psychiatric survivors often can't find work, can't even get interviews, and are often put in "sheltered workshops" where they are paid below minimum wage.

I wish I could tell you more about Michele's moving and important talk. But sadly...

Patricia Reilly
Ontario Network of Injured Workers Groups

ONIWG is a nonfunded, grassroots group advocating for injured workers. Patricia described the history of workers compensation funds, and it was an eye-opening view.

The concept of workers' compensation - of a system whereby employees who were injured on the job could be compensated - arose in response to corporate complaints about workers' lawsuits. To get the compensation system, workers gave up the right to sue.

In the early years of the 20th Century, there was a great deal of social unrest, all over North America. In Canada, a royal commission created a system meant to quell that unrest, to alleviate the burden on families of caring for family members whose work left them disabled, and to protect companies from the growing unrest. The idea was to take care of people for as long as they were injured, including for the rest of their lives, if necessary.

The Harris Government destroyed all that. (For non-Canadian readers, Mike Harris governed Ontario from 1995-2002. In brief, he destroyed as much of the social safety net as he could. Most of the difficult and unjust conditions Ontarians struggle with today can be laid at the feet of Mike Harris.)

The Harris Government changed the Workers Compensation Board to the Workplace Safety Insurance Board. Think of the difference in emphasis; the agency's name change reflects a change in orientation. Where once workers were compensated, now workplaces are insured. Now, injured workers are left to battle it out with their employers through a system whose goal is to pay out as little as possible.

Under the Harris Government, the province's vocational rehabilitation program was first privatized, then discontinued altogether. The person who oversaw that change is now the chair of the WSIB.

With the change, the WSIB has overseen a 50% increase in claims denials, with $630 million in benefits cut, vocational retraining slashed from 19 months to nine months, a 30% reduction in permanent impairment awards, and similar reductions on every level.

Image from Diary of a WorkCover Victim (AU)

Patricia described the massive disconnect between disability brought on from workplace injury and the compensation system - how she lost her home, and cashed in all her retirement savings, in order to survive. This may sound familiar to US readers, who know these stories affect millions of Americans who lack basic health insurance. In Canada the bar is a little higher, but it doesn't cover nearly enough. A huge number of injured workers live in poverty. ONIWG's studies show that after injury, 80% of injured workers lost full-time employment, fully half lost their homes, and half were forced to rely on food banks for survival.

The Ontario Network of Injured Workers Groups are workers organizing to creat change. They run a speaker school to train people for public speaking, they hold letter writing campaigns, and they teach about the history and social basis of their work. Among their greatest allies are the United Steelworkers, Ontario Federation of Labour, and OFL President Sid Ryan.

From the ONIWG website:
What we are fighting for!

Reform of the Workers' Compensation Act and Policy and return to the founding principles.

Dignity, Respect and Justice must be the foundation for a renewed Workers' Compensation System. We want a new Workers' Compensation Act, with stated purposes to truly assist and compensate workers injured, made sick and disabled at work.
You can read injured workers' stories here.

* * * *

The discussion after this talk was particularly powerful. UK organizer Judith Orr spoke about how the cuts to social benefits have brought an increase physical attacks against people with disabilities, with government rhetoric legitimizing the idea, framing people with disabilities as "draines" on the system and freeloaders. People with disabilities are not considered valuable under a capitalist system, because they don't create profit.

Dr J said that the struggles of people with disabilities is the most damning indictment of capitalism - capitalism at its most raw. People need time off work. They need accessible transit. They need safer workplaces. They need shorter working hours that can still meet their material needs. But capitalism cannot accommodate conditions that do not augment the labour market, that do not create profit. If there's anything most damning about capitalism, it's this inability to deal with any deviation from the profit-making norm.

12.25.2012

follow-up memo to children's aid: we told you so. happy christmas.

Back in May, I blogged about a family in my area who faced a nightmare: social services had threated to remove their child from their home. Both parents have disabilities, and although they had proved themselves completely capable of taking care of a baby, Children's Aid said they must hire round-the-clock assistance, or the family could not stay together.

When the story came to light, there was a huge outcry, not only from the disability community but from the general public, too. Children's Aid backed down, and, according to this follow-up story, has become their support and their ally.

Today, because reason won out over prejudice, the family celebrates its first Christmas together. I wish them a beautiful day.

8.14.2012

from the archives: paralympics integration with olympics, the athletes' perspectives

Oscar Pistorius' historic run as the first double-amputee Olympic athlete has revived the ongoing discussion of whether or not the Paralympics should be integrated into the Olympics. (Stories in The Guardian, Slate, and on CBC's The Current.)

Integration sounds like a great idea, and on the surface, the fierce opposition of many athletes with disabilities may seem purely self-interested. The issues, however, are far more complicated than most mainstream media is willing to take on.

I wrote about this issue when I covered the Atlanta Paralympics in 1996, and I thought some readers might be interested. I uploaded one story through Google - Change, Growth and Exclusion: A Paralympic Identity Crisis - and a second story I found archived on the New Mobility website: Where are the Paralympics going? Both are written from the perspective of athletes with disabilities.

6.29.2012

in defense of drugs: anti-depressant medication saves and improves lives

Friends, if this post sounds like a conversation we've had, please don't take it personally. I've had the same or similar conversations with many people. This is a subject that seems to arise periodically - here, on Allan's blog, on Facebook, in any forum I frequent. That's why I thought it was time to gather my thoughts and put them in a post.

The conversation is about the illness known as depression - also called clinical depression - and the treatment of that illness with anti-depressant medications. Every so often, an athlete or an artist will go public about their struggles with depression, or a new study about either the good or evil of anti-depressants will appear, and I find myself having this familiar conversation. Often, I agree with many of the arguments, but disagree with the conclusion.


I don't use anti-depressants myself, but many people I love do. I've seen anti-depressants, especially the class of drugs known as Selective Serotonin Re-uptake Inhibitors (SSRIs), do tremendous good. I've seen them change lives and save lives. Without these medications, many people I love would lead dire, desperate, lonely lives. In some cases, I don't think they'd be alive at all.

These are some arguments I've heard against the use of anti-depressants, and my response to each.

Big Pharma is evil. True. Pharmaceutical companies are purely profit-driven, and will stop at nothing in their quest for a fatter bottom line. They falsify data from clinical trials. They create biased studies driven by marketing. They re-package normal behaviour into "syndromes," then market drugs to treat the fake diseases. They are engines of the capitalist un-health system that has more incentive to perpetuate disease than to promote health. All this is true.

However, some people need anti-depressants in order to live decent, productive, balanced lives. And Big Pharma is where those drugs come from.

I've never heard the greed and deception of pharmaceutical companies used as an argument against taking medication for arthritis, diabetes, hypertension (high blood pressure), or any other chronic disease. Only for depression.

We don't know how they work. Somewhat true. It is known how SSRIs work, but it's not clear why different SSRIs have such different effects on different people. The chemistry of the brain remains, in many ways, uncharted territory.

However, "we don't know how it works" may be a partial statement of fact, but it's not an argument against taking the drugs. No one knows what causes fibromyalgia. But I know I have it and I know how it affects my life. Science advances unevenly. One day the medical science behind SSRIs may be fully known. Until then, why should that knowledge gap bother us?

They are over-prescribed. True. They are also underprescribed. I have no doubt that since the advent of SSRIs, some doctors prescribe medication for conditions that might be treated equally well (or possibly better, in some cases) with talk therapy, or perhaps not treated at all. At the same time, many people who suffer from serious depression could be helped by these medications, but won't take them, because of bias from their doctors, their families, or themselves.

The simple fact of over-prescription does not mean all prescriptions for anti-depressants are unnecessary. "Baby with the bathwater" caution applies.

Every mood does not need to be medicated away. True. But depression is not a mood. People who use anti-depressants to treat clinical depression still have bad moods. They still feel anger, sadness, pain, and so on.

Consider this. How many people would go to the trouble of seeing a doctor, asking for a prescription, trying different medications, struggling with the inevitable side effects, and so on, because they feel normal sadness? Generally by the time a person seeks help for depression, they have been suffering for a very long time. Just as these medications are under-prescribed, they are under-requested.


The drugs are institutionally abused. True. The United States Army hands them out like Tic Tacs to any soldier feeling the effects of trauma. Many hospitals use them routinely. This fact does not change the condition of people with clinical depression, nor change the fact that SSRIs help them.

There are side effects, some of them potentially dangerous. True. This is true for most, if not all, drugs. Each of us weighs the costs and benefits, the risks and rewards, of taking medication. When conditions are serious enough, most of us are willing to put up with some risk. This is as true for depression as it is for arthritis, diabetes, and high cholesterol.

Medication is a shortcut. The only real treatment for depression is talk therapy. First of all, what's wrong with shortcuts? The moral imperative to do things the hard way should be tossed in the trash next to the whalebone corset and carbon paper. More importantly, many people with serious depression cannot participate in effective talk therapy without first taking medication. Medical therapy and talk therapy often work together to produce real results.

A study proved they don't work. I've noticed that articles about anti-depressants often graft sensational headlines onto banal stories, or present skewed and sketchy non-arguments. The headline "Study Shows Anti-Depressant Drugs Use Placebo Effect" may sit atop a story saying that one-quarter of the people studied experienced no results. But it's already known that these drugs don't work for everyone. On a website promoting non-pharmaceutical medication for depression, I saw: "Only 1 in 4 had positive results with the first medication tried." That only tells us that most people had to try several drugs before they determined whether medication was effective or not.

People who use anti-depressants know that they work. A friend of mine who struggled with suicidal thoughts and uncontrollable sadness and rage every single day of her life is now a happy and productive person. Without the drugs, the black cloud descends. These are facts for millions of people.

Depression is not a disease. It's part of the human condition. It's a normal part of life. I submit that the person who says this does not understand what depression is, or else has experienced a form so different that it rightly could be called something else entirely.


To split hairs, everything that humans experience is "part of the human condition". Arthritis and diabetes are part of the human condition, but we don't suggest that people suffer and die from those chronic illnesses when they can be easily treated.

It is not normal to be unable to get out of bed every morning because one's limbs are weighed down with despair. It is not normal to fight thoughts of suicide, every day. It is not normal to find no pleasure in anyone, anything, any time.

I'm not suggesting that feelings of depression are never a normal and temporary state, a reaction to a tragic or traumatic event in one's life. But when those feelings persist over time, drowning out all other feelings, until life doesn't seem worth living, separate from any situation or event, something else is going on.

I tried them and didn't like them. I hear this often, and I think this response gets closest to the heart of the problem with all of these arguments - and with so many arguments. Our experiences are not universal. Each of us is unique. The word "depression" may be - probably is - used to describe several different conditions. Your experience with depression may be totally different than someone else's. It may feel different, and respond to treatment differently.

I suffered from depression as a teenager. I didn't have medication. My depression passed from a combination of events: leaving an abusive home, stopping or reducing recreational drugging, and talk therapy. But why should I assume that my experience will apply to anyone else? In the grand mosaic of humanity, nothing seems to be one-size-fits-all - not sexuality or worldview or learning style or anything else, including mental health.


A few assumptions underlie most of these are arguments.

One assumption is the persistent stigma surrounding mental illness and mental health. Very few people would urge someone with diabetes, arthritis, or hypertension (all chronic conditions) to not seek medical treatment. Most of us believe we should extend our life expectancies by using medications when needed, in addition to making whatever lifestyle changes we can. Yet so many people won't extend that latitude to mental health, and insist that lifestyle changes should be enough. Get more exercise, suck it up, and get on with your life.

Another assumption, as I wrote above, is the universality of our own experience. If you tried anti-depressants and they either didn't help you or made you feel worse, then surely you shouldn't use them. If your own depression passed without using drugs and you are glad for that, then so be it. The challenge might be to own your experience without trying to apply it to anyone else.

And finally, I believe that many of the arguments against the use of anti-depressants stem from a lack of understanding of what clinical depression is. It's not "the blues," it's not a moral weakness, it's not a deeper understanding of life, it's not the price we pay for living. For a view into that heart of darkness, I recommend reading William Styron's Darkness Visible, and The Noonday Demon by Andrew Solomon. These works bring you as close as you will ever come to understanding another human's experience.

5.02.2012

memo to children's aid: people with disabilities can be capable parents

This story makes me so angry and frustrated. I can only imagine how the parents feel! I've reached out to some activists I know who are people with disabilities for suggestions on how we can support this family.
A disabled couple in Mississauga are fighting to keep their newborn son after social workers threatened to take the boy away unless he receives round-the-clock care from an “able-bodied attendant.”

Maricyl Palisoc and her partner, Charles Wilton, are the parents of a healthy month-old baby boy named William. Both parents have cerebral palsy, a disorder that limits their motor skills and slurs their speech, but has no effect on their cognitive abilities.

However, the Peel Children’s Aid Society is concerned about the couple’s ability to take care of their son and has expressed an intention to remove William from their home unless his parents secure 24-hour care from an able-bodied person.

The boy’s mother told CBC that she and her partner do not want to lose their son.

"We know that we need help, but we know that we are the best thing for our boy right now,” Palisoc said. "We both wanted to be parents and now we are, and we don't want do give anyone control of our family."

So far, the couple have been receiving the type of help that the CAS has demanded, thanks to Ryan Machete, a program co-ordinator with the Coalition for Persons with Disabilities, which provided the funds for the services since William's birth.

Machete said he’s not convinced it is necessary to spend $2,000 a week for a caregiver when Palisoc is able to change diapers, breastfeed and to “do the necessities” that come with caring for a newborn.

“From what I’ve seen when I’ve been at the apartment … there’s really nothing that she’s unable to do,” Machete told Metro Morning.

However, he said, it is possible matters will become more challenging as William grows, but that doesn’t mean she won’t be able to look after her son.

“I think that maybe when William grows up to be six years old and hurts his knee and needs his mom to pick him up, and he’s 60, 70 pounds, maybe that might be a little bit more difficult for her to do,” Machete said.

The Peel Children’s Aid Society says confidentiality rules prevent it from commenting on the case. The organization is due to meet with William’s parents on Friday to try to work out an arrangement.

3.22.2012

canadian profile: justin hines

In the March issue of New Mobility, I have a cover story about Canadian musician Justin Hines. You can see it here.

I wrote this over my winter break - just as the library job came through! Not exactly the restful vacation I was hoping for. Fortunately I had a lot of help; Allan should really have a co-byline on this one.

The print edition looks terrific, full of great photos. It was a pleasure to interview Justin, he seems like a terrific guy. I add this to my profiles of interesting Canadians: Chantal Petitclerc, Stephen Fletcher, and the great Alyssa Manning.

For those of you who can't get enough of my scintillating prose, I posted this with the Children's and Youth Advocacy group at the iSchool: A View from a Children's Library.

9.02.2011

kenney's canada: paralyzed woman to lose independence if caregivers are deported

Just another story of more undeserving immigrants trying to sneak into the promised land. This one is a particularly sneaky ploy. Here's how you do it.

First, emigrate to Canada, a process that takes a minimum of two years, often twice that or longer.

Then, live in Canada long enough to become a citizen, a minimum of three years.

Then have a car accident in order to become quadriplegic. Yay, free health care! That was easy!

Next, find two family members willing to uproot their lives and start over in a foreign country in order to be serve as your full-time caregivers. Can't you just see them high-fiving? "Whoo-hoo, we're scamming the system, taking care of our quadriplegic cousin!"

I suck at this satire stuff. Al Weisel, a/k/a Jon Swift, is sorely missed.

All I can say is: Really, Jason Kenney? Really?
A Toronto woman paralyzed from the chest down is worried she will be forced back into a nursing home if immigration officials go ahead with plans to deport her cousin and his wife, who she relies on for primary care.

Hallima Idan, 47, was left paralyzed after a car accident six years ago.

A wheelchair user with limited use of her arms, Idan requires around-the-clock care to help her eat, bathe and dress.

Idan, a Canadian citizen who immigrated from Guyana in 1997, spent months in hospital after the accident then stayed in a nursing home for about a month. Idan said her nursing home care was inadequate.

"It was so awful," she told CBC News. "They don't shower you, they don't give you nothing proper to eat. Nothing. If I stayed there any longer, I might commit suicide because I can't take it."

Idan said her husband was unwilling to care for her and "abandoned" her. Other family members stepped in to look after her as best they could but could not be with her the 24 hours a day that she required.

Idan's cousin, Mohamed Arpha, and his wife, Zarine, came to Canada in 2007 and began to provide full-time care for Idan in her Toronto apartment.

The couple applied for refugee protection on humanitarian and compassionate grounds but the application was rejected and they were ordered deported.

. . . .

Judith Pilowsky, a Toronto psychologist who specializes in treating people who have suffered acute trauma, wrote a letter in support of the Arphas staying in Canada for compassionate reasons.

In her letter, Pilowsky said if the Arphas are deported, "Ms. Idan is highly susceptible to a complete psychological breakdown from which she will not recover."

Unable to afford private home care, Idan fears she will have to a return to a nursing home if the Arphas are sent back to Guyana.

"I'd rather die than go back [to a care home]," she said.
This story raises several questions, among them: why was this woman's nursing home care so sub-standard? Is that the norm in Toronto-area long-term care facilities? Almost everyone speaks of nursing homes with dread: institutionalization, lack of privacy, lack of independence. Those issues are very real. But the quality of care can still be excellent. Is the woman (understandably) exaggerating because she dreads returning to a facility, or was the care really that bad?

On the main point, why is Canada in such a rush to deport her caregivers? I have read that applications to remain in Canada on humanitarian and compassionate grounds - referred to as "H&Cs" - used to be granted in about half of all cases, but that now, under Citizenship and Immigration Minister Jason Kenney's watch, the success rate has dropped to less than 20%. (I haven't been able to locate my source for this, but I'll continue to look.) Not for nothing NDP Immigration Critic Olivia Chow calls Kenney the Minister of Censorship and Deportation.

From the government's point of view, what could be more desirable than family caregivers? Unless, of course, the government is hostile to immigration.

9.06.2010

thoughts on roger ebert and transcending circumstance

On the off chance that I was not the last person in the world to find out about this, I'd like to highlight some stories about Roger Ebert, the famous film critic. Since 2006, Ebert has been unable to eat or speak. His lower jaw and part of his throat were removed during cancer surgery; several complicated surgeries to rebuild his face and vocal cords failed. I'm not sure how I missed this, but no news of Roger Ebert reached my island until this past weekend.

Ebert now blogs and has an extremely popular Twitter feed. He writes about politics and social issues, and movies, and culture - and he cooks, and writes about food. Like any really good writer, Ebert can write about nearly anything that interests him and make it a good read.

So the man is missing part of his face, and he doesn't eat, and he doesn't speak. What does that mean? How does he live? One can get nourishment through a stomach tube, and many people communicate without verbally speaking. But the mechanical means of survival are the least interesting part of a disability story. How did he adjust? What helped, what hurt? Who is he now, and how different is it from who he was? Questions like that flood through my mind.

A writer for the New York Times recently began a story about Ebert with a classic - that is, cliched - lede about her personal awkwardness at being in a restaurant with a man with no jaw. Where should she look? What happens when it's time to order? Because, you know, other people's disabilities are all about your social comfort.

I've spent a lot of time listening to, thinking about and writing about people who live rich and fulfilling lives, and who have complex physical disabilities. Not "who live fulfilling lives despite disability"; I don't subscribe to the standard "overcoming obstacles" take. Every successful person has overcome obstacles, almost by definition. Some obstacles are more visible than others, and the ones that are visible - even for that person - may not even be the biggest challenges. For example, Roger Ebert is also a recovered alcoholic. Addiction is an obstacle that millions of people struggle with every single day, but it rarely shows.

At the same time, the "living a good life despite disability" angle imagines disability as outside the person, a separate entity to be pushed aside or clambered over on the way to normalcy. How can something so integral to one's identity be reduced to an impediment to be "overcome"? Physical disability is often deeply identifying, like gender, or sexuality, or skin colour. Are the essential facts of our lives merely obstacles?

I've come to think of the success-with-serious-physical-disability story as "transcending circumstance". The circumstance is unavoidable. It can't be denied or ignored. It must be dealt with. But how? Some people live in the past. Others carry their disability like a flag - always on display, but still at a distance. But many people incorporate their changed circumstance into a new identity; they embrace it and are transformed by it. Then they turn around and transform their world.

Transcending circumstance is not a solo act. It requires a strong support network, a lot of love, and access to excellent health care and rehab programs. It requires a fierce inner strength and self-awareness. It requires flexibility: a willingness to shed an entire way of being and enter into a new bargain with life. To move beyond regret for the past and fear of the future - to acknowledge loss, to mourn - and then to change. Inside. That is transcendence.

Here's an excerpt from Chris Jones' excellent story on Ebert that ran in Esquire this past March.
Ebert spent more than half of a thirty-month stretch in hospitals. His breathing tube has been removed, but the hole in his throat remains open. He eats through a G-tube — he's fed with a liquid paste, suspended in a bag from an IV pole, through a tube in his stomach. He usually eats in what used to be the library, on the brownstone's second floor. (It has five stories, including a gym on the top floor and a theater — with a neon marquee — in the basement.) A single bed with white sheets has been set up among the books, down a hallway filled with Ebert's collection of Edward Lear watercolors. He shuffles across the wooden floor between the library and his living room, where he spends most of his time in a big black leather recliner, tipped back with his feet up and his laptop on a wooden tray. There is a record player within reach. The walls are white, to show off the art, which includes massive abstracts, movie posters (Casablanca, The Stranger), and aboriginal burial poles. Directly in front of his chair is a black-and-white photograph of the Steak 'n Shake in Champaign-Urbana, Illinois, one of his hometown hangouts.

He believes he's had three more surgeries since the removal of his lower jaw; Chaz remembers four. Each time, however many times, surgeons carved bone and tissue and skin from his back, arm, and legs and transplanted them in an attempt to reconstruct his jaw and throat. Each time, he had one or two weeks of hope and relief when he could eat a little and drink a little and talk a little. Once, the surgery looked nearly perfect. ("Like a movie star," Chaz remembers.) But each time, the reconstructive work fell apart and had to be stripped out, the hole opened up again. It was as though the cancer were continuing to eat away at him, even those parts of him that had been spared. His right shoulder is visibly smaller than his left shoulder; his legs have been weakened and riddled with scars. After each attempt at reconstruction, he went to rehabilitation and physical therapy to fix the increasing damage done. (During one of those rehabilitation sessions, he fell and broke his hip.) He still can't sit upright for long or climb stairs. He's still figuring out how to use his legs.

. . .

There are places where Ebert exists as the Ebert he remembers. In 2008, when he was in the middle of his worst battles and wouldn't be able to make the trip to Champaign-Urbana for Ebertfest — really, his annual spring festival of films he just plain likes — he began writing an online journal. Reading it from its beginning is like watching an Aztec pyramid being built. At first, it's just a vessel for him to apologize to his fans for not being downstate. The original entries are short updates about his life and health and a few of his heart's wishes. Postcards and pebbles. They're followed by a smattering of Welcomes to Cyberspace. But slowly the journal picks up steam, as Ebert's strength and confidence and audience grow. You are the readers I have dreamed of, he writes. He is emboldened. He begins to write about more than movies; in fact, it sometimes seems as though he'd rather write about anything other than movies. The existence of an afterlife, the beauty of a full bookshelf, his liberalism and atheism and alcoholism, the health-care debate, Darwin, memories of departed friends and fights won and lost — more than five hundred thousand words of inner monologue have poured out of him, five hundred thousand words that probably wouldn't exist had he kept his other voice. Now some of his entries have thousands of comments, each of which he vets personally and to which he will often respond. It has become his life's work, building and maintaining this massive monument to written debate — argument is encouraged, so long as it's civil — and he spends several hours each night reclined in his chair, tending to his online oasis by lamplight. Out there, his voice is still his voice — not a reasonable facsimile of it, but his. [Read it here.]

From the New York Times this weekend:
He both writes and thinks about food in the present tense. Ask about favorite foods and he’ll scribble a note: “I love spicy and Indian.” An offer to bring some New Jersey peaches to his summer home here on the shore of Lake Michigan brings a sharp defense of Michigan peaches and a menu idea. “Maybe for dessert we could have a salad of local fresh fruits.”

“Food for me is in the present tense,” he said. “Eating for me is now only in the past tense.” He says he has a “voluptuous food memory” that gets stronger all the time.

“I can remember the taste and smell of everything, even though I can no longer taste or smell,” he said.

That is, he concedes later, a bit sweeping. He can’t remember the food at a French spa prepared by Michel GuĂ©rard, who has three Michelin stars. And he can’t recall the last meal he ever ate, because who knew then that surgeons would never be able to fix it all?

But he remembers everything about the food at the Steak ’n Shake. In the hospital, he told me, he ate Steak ’n Shake meals a bite at a time in his mind. Still, what he longs for most is the talk and fellowship of the table.

“The jokes, gossip, laughs, arguments and shared memories I miss,” he wrote in a blog post.

The eating itself is a side note, really. Anyone who has put together a winning dinner party understands that. But food — the cooking and sharing part of it — still means so much to him that he is publishing a cookbook this month. It’s based entirely on meals to be made in a rice cooker. The title is “The Pot and How to Use It: The Mystery and Romance of the Rice Cooker” (Andrews McMeel Publishing, $14.99).

How can a guy without a working tongue write a recipe?

And Ebert's blog and Twitter feed. About blogging, he says, "The blog has opened a new world just when I needed it."

8.10.2010

delayed obit: john callahan

Ah, the dangers of taking a break from the news and Facebook. I missed the passing of John Callahan, now more than two weeks ago, and only found out inadvertently as we were throwing away an bit of old newspaper Allan picked up somewhere.

Callahan, as he was always known, was a cartoonist whose irreverent, sometimes morbid humour laughed at the world of disability, and at the public's response to disability. He was intimately familiar with that world, having lived as quadriplegic since the age of 21. Callahan was an alcoholic, and an adoptee, and I think he was deeply compassionate in a way that many people could not understand.

I constantly think of the line that he used for the title of his autobiography: "Don't worry, he won't get far on foot." His humour wasn't the pablum of "laughter is the best medicine," nor was it the trite self-deprecation of identity-standup. He just wasn't afraid to find humour in everything, and he didn't think he needed permission to laugh at anything.

The Callahan website is here. Here's some of the New York Times obit.
“This is John, I’m a little too depressed to take your call today,” the message on his answering machine said. “Please leave your message at the gunshot.”

Looking askance at the culture of confession and self-help fostered by the likes of Oprah Winfrey and Geraldo Rivera, he was not inclined in his work to be outwardly sympathetic to the afflicted or to respect the boundaries of racial and ethnic stereotyping. His cartoons were often polarizing: some found them outrageously funny, others outrageously offensive.

There was the drawing of a restaurant, the Anorexic Cafe, with a sign in the window saying, “Now Closed 24 Hours a Day.” There was one showing a group of confused-looking square dancers unable to respond to the caller’s instruction to “return to the girl that you just left,” with a headline reading, “The Alzheimer Hoedown.”

There was the drawing of a blind black man begging in the street, wearing a sign that read: “Please help me. I am blind and black, but not musical.” In another, a sheriff’s posse on horseback surrounds an empty wheelchair. The caption gave him the title of his 1990 autobiography: “Don’t Worry, He Won’t Get Far on Foot.”

And there was the drawing of an aerobics class for quadriplegics, with the instructor saying, “O.K., let’s get those eyeballs moving.”

I never met Callahan in person, but I will really miss him.

5.04.2010

raw story: u.s. school for disabled tortures students with electric shocks

Other than repeating WTF WTF WTF over and over, I post this without comment.
US school for disabled forces students to wear packs that deliver massive electric shocks

Mental Disability Rights International (MDRI) has filed a report and urgent appeal with the United Nations Special Rapporteur on Torture alleging that the Judge Rotenberg Center for the disabled, located in Massachusetts, violates the UN Convention against Torture.

The rights group submitted their report this week, titled "Torture not Treatment: Electric Shock and Long-Term Restraint in the United States on Children and Adults with Disabilities at the Judge Rotenberg Center," after an in-depth investigation revealed use of restraint boards, isolation, food deprivation and electric shocks in efforts to control the behaviors of its disabled and emotionally troubled students.

Findings in the MDRI report include the center's practice of subjecting children to electric shocks on the legs, arms, soles of feet and torso -- in many cases for years -- as well as some for more than a decade. Electronic shocks are administered by remote-controlled packs attached to a child's back called a Graduated Electronic Decelerators (GEI).

The disabilities group notes that stun guns typically deliver three to four milliamps per shock. GEI packs, meanwhile, shock students with 45 milliamps -- more than ten times the amperage of a typical stun gun.

A former employee of the center told an investigator, "When you start working there, they show you this video which says the shock is 'like a bee sting' and that it does not really hurt the kids. One kid, you could smell the flesh burning, he had so many shocks. These kids are under constant fear, 24/7. They sleep with them on, eat with them on. It made me sick and I could not sleep. I prayed to God someone would help these kids."

. . . .

Mother Jones magazine published an extensive investigative report on the Rotenberg Center in 2007 titled "School of Shock." Reporter Jennifer Gonnerman asked, "How many times do you have to zap a child before it's torture?"

Children at the Judge Rotenberg Center are often shackled, restrained and secluded for months at a time, the report says. Social isolation, and food deprivation as forms of punishment are common. Mock and threatened stabbings -- to forcibly elicit unacceptable behaviors resulting in electric shock punishments (Labeled as Behavioral Research Lessons or BRLs, by the center) were reported to MDRI as well as state regulatory bodies. . . .

"One girl who was blind, deaf and non-verbal was moaning and rocking," a former teacher says in the report. "Her moaning was like a cry. The staff shocked her for moaning. Turned out she had broken a tooth. Another child had an accident in the bathroom and was shocked."

The rights group investigation found that the Rotenberg center is the only known facility in the United States, "Or perhaps the world," that employs the use of electricity, long-term restraints and other punishments to deliberately inflict pain upon its children and then refer to it as "treatment."

See original for more and links.

Update: Please see comments for context I felt but was unable to write.

3.14.2010

ambassador sam sullivan on why the paralympics matter

I love the Paralympics! For me, this is the real Olympics - amateur athletes, ordinary people who compete because their talents and drive compels them to. Inevitably, some of the problems I have with the Olympics have crept into the Paralympic Games, but to much lesser and more tolerable degree.

Shortly after we moved to Canada, I watched much of the Torino Olympics, and first learned that "Olympics" in Canada means the winter Games. It was also my first live exposure to a country that understands the Paralympics as great sport, not a giant pity party. I had always heard from athletes that this was the case in Canada, Australia, Germany, Japan, and other countries, but seeing it for myself was very exciting. (Another thing I discovered during those games: Newfoundland! It was the advertising blitz during Torino that eventually led to our trip to The Rock in 2008.)

At the 2006 closing ceremonies, I was awed to see Sam Sullivan, then mayor of Vancouver, wave the Maple Leaf. I had interviewed Sam a few times when he was forging new ground for people with disabilities with assisted sailing, hiking, gardening and music-making. I was proud to live in a country where he could be mayor of a major city, and no one cared about his disability one way or another. I still am.

CBC's Ian Hanomansing interviewed Sullivan, now Ambassador to the 2010 Paralympics, about the Games. It's very good: watch it here.

I've blogged a lot about the Paralympics, what they mean to me, why I love them, why I want everyone to see them, so I'll try not to repeat the whole spiel here, and just let Sam talk.

3.12.2010

sarah palin, down syndrome and a loaf of french bread

I don't know the back story to this, but I love it. I like it so much, I'm breaking my usual shunning of all things Palin to post it.
Andrea Fay Friedman, the voice actress who played the role of "Ellen" -- the character depicted as having Down syndrome on the Valentine's Day episode of Family Guy, has responded to the criticism of sometime-Alaska Governor Sarah Palin. Of special significance, Friedman herself has Down syndrome. Palingates has Friedman's complete response:

My name is Andrea Fay Friedman. I was born with Down syndrome. I played the role of Ellen on the "Extra Large Medium" episode of Family Guy that was broadcast on Valentine's day. Although they gave me red hair on the show, I am really a blonde. I also wore a red wig for my role in "Smudge" but I was a blonde in "Life Goes On". I guess former Governor Palin does not have a sense of humor. I thought the line "I am the daughter of the former governor of Alaska" was very funny. I think the word is "sarcasm".

In my family we think laughing is good. My parents raised me to have a sense of humor and to live a normal life. My mother did not carry me around under her arm like a loaf of French bread the way former Governor Palin carries her son Trig around looking for sympathy and votes.

Oh man, I love it!

Thanks to DCeiver. Also from the HuffPo link, an interview with Friedman on a New York Times blog. Very nice.

2.19.2010

can you blame them? four-year-olds often hide bombs in their leg braces

Do you need any more proof that "security theatre" - the appearance of increased security measures, which do nothing to make us safer - is out of control? That airport security and border control are merely opportunities for power-mad brownshirts to have fun at our expense?
Philadelphia TSA screeners forced the developmentally delayed, four-year-old son of a Camden, PA police officer to remove his leg-braces and wobble through a checkpoint, despite the fact that their procedure calls for such a case to be handled through a swabbing in a private room. When the police officer complained, the supervising TSA screener turned around and walked away. Then a Philadelphia police officer asked what was wrong and "suggested he calm down and enjoy his vacation."

Ryan was taking his first flight, to Walt Disney World, for his fourth birthday.

The boy is developmentally delayed, one of the effects of being born 16 weeks prematurely. His ankles are malformed and his legs have low muscle tone. In March he was just starting to walk...

The screener told them to take off the boy's braces.

The Thomases were dumbfounded. "I told them he can't walk without them on his own," Bob Thomas said.

"He said, 'He'll need to take them off.' "

Ryan's mother offered to walk him through the detector after they removed the braces, which are custom-made of metal and hardened plastic.

No, the screener replied. The boy had to walk on his own.

According to MSNBC, the TSA apologized. BFD.

Many thanks to James for sending.

1.09.2010

emily schmidlin and the gift of mobility

Many people think it would be terrible to need a wheelchair. But when you know a lot of people who use wheelchairs, it's just another way of getting around.

This is not to say that losing the use of your legs would be easy, or wouldn't be traumatic. And of course a permanent disability is a completely life-changing event. But wheelchairs are an everyday fact of life for millions of people, and often a completely unremarkable fact of life.

But imagine needing a wheelchair and not having one. Now that would be horrible. People all over the world face that confinement and dependence. And I know someone who's doing something about it.

* * * *

A couple of years ago, I wrote a story for Kids On Wheels magazine about young people with disabilities who are activists. I didn't intend to focus only on disability-related activism, and I have no doubt that there are kids with disabilities active in the environmental movement, in politics, in animal welfare, what have you. But my research turned up some young movers and shakers of the disability-rights world, and introducing them to my readers - wheelchair-users roughly between the ages of 7 and 12 - was a joy. You can read the story here. (That's actually the whole issue, if you're interested in what the magazine looked like.)

One of them, Rasha Kawar, I had written about before: when she was 8, Rasha began a petition drive to require airplanes to have a disabled-accessible washroom on board. It's easy to do, but it means the loss of seats, so airlines are digging in their heels. When I caught up with Rasha a few years later, she was still a driven activist, and I can see she always will be.

Emily Schmidlin was another amazing young woman I interviewed for that story. Emily is bursting with energy and optimism. She's an organizer, a leader, a do-er. But she's also warm, compassionate and generous. It's quite a combination. Emily and I discovered we shared a love of travel, but I was a little nuts with envy when I learned she's been in all 50 states and 10 provinces!

I get Emily's Facebook feed, and through that learned of her current project. Now I'll turn this post over to her.
Subject: Help me transform lives through the gift of mobility

This year, I am teaming up with Free Wheelchair Mission in order to raise funds to provide wheelchairs to the disabled poor in developing nations around the world. I have had many amazing opportunities in my life, none of which would have been possible without a wheelchair.

For many physically disabled people, a wheelchair is beyond their dreams. For the poor and immobile in developing countries, the simplest daily functions are a struggle. Many lack the basic mobility needed for a life of dignity and independence.

However, a simple solution is available. Free Wheelchair Mission manufactures and distributes a sturdy wheelchair specifically designed for developing countries for only $59.20 per chair. Each chair is distributed at no cost to the recipient. My wish is to enable these people to experience a small piece of what I take for granted.

I have set a personal goal to change 550 lives (one shipping crate = 550 chairs). A donation of $59.20 will purchase a wheelchair. Any donation is appreciated and will be used to partially fund a chair. With your help, independence, mobility and hope will transform lives around the world.

Thank you for your help!

Emily

I told Emily I could make a small donation, and I would post about it on wmtc and on Facebook. This was her reply.
Thank you so much for your support! Every bit is greatly appreciated. I think of it this way, 5920 pennies can transform a life in the same way that one gift of $59.20 does, so there is no gift too small. When I reach my goal, I will be going on a mission trip to distribute the chairs. I am excited to have the opportunity and privilege to enter into the lives of the recipients!

Thanks again and take care,
Emily

This is Emily's signature line:
I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do. ~ Edward Everett Hale

To donate online, go here.

If you prefer to donate by cheque or check, email me for Emily's address.

Remember what she said: no amount is too small.

10.10.2009

fear less. live more.

Marge Simpson on the cover of Playboy is getting a lot of attention, but here's something even hotter.

Sarah Reinertsen, an amputee athlete, is one of six athletes featured - nude - on different covers of ESPN Magazine's "Body Issue". See Sarah's cover here.

I wrote about Sarah a long time ago for Sports Illustrated for Kids, and blogged about her disability pride. Many people know her from "The Amazing Race," which I've never seen.

Here's her website. "Fear Less. Live More." I like it.