Sunday, 22 December 2013

In Praise of Toronto

I think I wrote something about this last year at about this time when I was in Toronto with family...but it bears repeating, especially since mayor Rob Ford's antics have caused the city's reputation to take such a beating over the last couple of months.

I like Toronto. I don't get there very often anymore, and it's always a treat to visit, especially during the holidays. I like the excitement of the city during the holidays, even if the stores are crowded. And my visit there last week was especially nice because I not only got to spend time with my dad and a dear family friend, but I got to eat in a nice restaurant and do some wandering around the Eaton Centre and see "Les Miserables" at the Princess of Wales theatre. A very nice day.

Made so much nicer by the fact that, every time we set foot on public transportation that day (street car or subway), someone immediately offered their seat.

Toronto Residents Get It

I'm told that in other cities people don't easily vacate seats, but it's always been my experience in Toronto that people will jump up without  asking. Now, I can manage standing on public transportation, as long I can hang onto something - I hook my cane on my weak arm, widen my stance, and make sure that I'm paying attention at all times, because the stops are abrupt sometimes - but it's nicer to be able to sit down and not have to worry about falling and knocking other people over in the process.

The people that stand out as giving up their seats for me are the teenage boy on the subway who wanted to know if I was sure when I declined (we were only going a stop), the elderly gentleman on the streetcar who, frankly, looked as if he might need the seat more than I did but insisted that I have it...and the man who spotted me from across the very crowded subway car when we got on, hopped up, and waved me over.

"Take your time..." he said, offering his arm.

When I was seated, beside his friend, he asked what stop I was getting off at. I motioned to Dad, standing by the door on the other side of the car, and said, "I need to watch him."

"Don't get off without her!" he called to Dad, who smiled.

"Does he want to sit down?" asked the man beside me, instantly concerned.

"No, don't worry," I said.

When Dad called back that out stop was approaching, I was again offered an arm and told to take my time, and sent off with a smile and a "Have a  great night!"

In the past, I've found that amount of assistance from someone, particularly a stranger, patronizing. I think that I'm getting better at gauging intention and letting it guide my reactions more. I think I'd rather live in a world where people offer to help, and just don't get offended if people say no...

I know that the chances of anyone who gave up their seat for me last Thursday are slim...but thank you to all of you anyway.

Happy Holidays, everyone. :)

Saturday, 21 December 2013

Ashley Smith's Death Finally Declared a Homicide

I don't know how I'd forgotten about Ashley Smith's story.

I do remember hearing about it, closer to when it all happened. But I'd forgotten. And I haven't been listening to the news much lately, so I'd missed the fact that the inquest was winding up.

If you're not from Canada, you likely haven't heard Ashley Smith's story. She was 19 years old. She'd been Canada's prison system for 5 years in 2007, and would have been eligible for release in November of that year. But on October  17, 2007, in Grand Valley Institution, she tied a piece of cloth around her neck and choked herself to death in her cell. The guards watched, instructed not to enter her cell while she was still breathing.

Ashley Smith had a history of tying ligatures around her neck for, the told the prison, sensation. However, this time she'd been on suicide watch for a week after explicitly stating to a manager that she intended to kill herself. Read more here.

On December 19th, her death was declared a homicide instead of a suicide.

It's About Time

So I know that this isn't much of a feel-good story for the holidays...I'm going to get to one of those before Christmas, so keep reading...but I surrounded by media updates about the inquest all day on Thursday when I was in while (in the later hours of the day), it was great to hear that this Ashley Smith's death had been declared a homicide, the details of her story were surrounding me all day, and I felt physically ill every time I heard them. Like I said, I'd heard about this story before, but hearing about it on the radio for the first of many times that day was like a kick in the stomach.

I'm really wrestling with is how, orders or not, the guards could stand there and watch an inmate commit suicide without intervening. I want to know what it is about working in the Canadian federal prison system that makes a guard into a person that could do that. I want to know where this disregard for human life that's apparently infiltrated the system as a whole has come from, and why there's either so little known about mental health conditions and their management and treatment (or why what is known has been so disregarded).

Because there was some very disturbing testimony from witnesses:

  • Psychiatrists prescribed medications to Ashley Smith without seeing her, and she was sometimes medicated against her will.

  • When she got therapy, it was through the food slot of her cell door

  • For not handing over self-harm tools, Ashley Smith's cell was sometimes stripped leaving her with no blanket, mattress, or hygiene products and sometimes just a security gown to wear.

Read more about the witness testimony here.

The jury could not assign responsibility for Ashley Smith's death. Determining who was responsible is an entirely different matter, and one for the police investigation that Ashley Smith's family has requested now be re-opened.  But the jury made it clear that they didn't think that the guards, who were originally criminally charged and then had the charges dropped, should be targeted. They want to go after the big guns. Julian Falconer, the lawyer for Ashley Smith's family, says that the investigation will be into who gave the order not to go into her cell. (Read more here)

And I understand that. We do need to further back to fully understand what happened that day and who is ultimately responsible.

Going Back...

I got the following information from Toronto Star's timeline on the Ashley Smith case.

Ashley was 13 when she entered the prison system as a person with a mental health diagnosis of oppositional defiant disorder, which was later changed to severe borderline personality disorder. She'd thrown crab apples at a postal worker. She received a closed custody sentence at the New Brunswick Youth Centre, where she, according to the Toronto Star's timeline, "incurred 50 additional criminal charges related to minor assaults on guards and prankish stunts such as pulling sprinklers and fire alarms or covering the window of her jail cell with scraps of toilet paper".

In 2005, Ashley entered the adult prison system, and was transferred to a federal prison in 2006. Her attempts to self-harm, consisting of "self-strangulation with ligatures, head-banging, and superficial cuts to her arms" got her a transfer to a transfer to a psychiatric facility in 2006.

What the Toronto Star timeline doesn't show is that in the next year, Ashley was in 17 facilities in 5 different provinces, and in segregation cells in each one.  Each time she was sent to a new prison, the clock was reset on her segregation time, to avoid having to review her segregation status (Read more here).  During her time in Joliette Detention Centre in 2007, she was medically and physically restrained twice in July, according to the Star's timeline, for attempting to self-injure with screws from the wall. She'd die three months later, just six weeks before being eligible for release.

I'm no expert in mental health. But I don't think it takes an expert to see that this was a young woman in chronic distress and under tremendous stress. She'd been in segregation cells for almost three years. She'd moved 17 times in a year. She was potentially facing release, which would be a tremendous transition after six formative years in prison. Juries also saw video of her being hooded and duct-taped to airplane seats during transports, and of her forced to the floor by police in riot gear and injected with drugs - post-traumatic stress disorder can't be ruled out as something that was influencing her actions.

These videos are available for viewing here but are very disturbing. Please be safe.

Certainly she would not have easy to deal with at times. But is it any wonder that that Ashley Smith frequently tried to block the guards' view into her cell by putting magazine pages over the camera? Or that she responded to their discipline with kicking and biting?  Or, given that self-harm was obviously a coping mechanism (and a common one in people with borderline personality disorder) that stress would have driven her to continually find new ways to do so?

Breese Davies, lawyer for the Association of Elizabeth Frye Societies, said that the videos also showed a largely hidden side of Ashley Smith: "a witty, engaging, smiley teen who in times of serenity endeared herself to those around her." (Read more here)

It's just such a shame that no one will get to see what Ashley could have been, what she could have accomplished, when she wasn't always living in stress and fear.

If you take a closer look at the Toronto Star timeline, you'll see that it took an awfully long time to get to this ruling - at one point inquest was even suspended indefinitely. It'd be great to see some lost time get made up and see that someone's held responsible for Ashley Smith's death - and some quick and decisive action taken on putting the 104 recommendations that the jury made in place, to help ensure that something like this doesn't happen again. Those recommendations include:

  • Abolishing indefinite segregation sentences

  • Giving front-line staff the ability to take action to preserve an inmate's life without seeking authorization and without "fear of discipline or reprisal", even if it turns out that the aid wasn't, in fact, required

  • Female inmates be accommodated in regions closest to family or supports.

  • Ensuring that nursing services are available for inmates at all times.

The list of recommendations is very thorough, and available here. Frankly, I'm quite shocked that some of these things are not in place already.

I think that one of the ones that I like best is that Ashley Smith's case be taught as a case study to Canadian Correctional Services at all levels. I agree with the National Post's Christie Blatchford on this one:  Canada Correctional Services killed her, and they should make sure that everyone who works for them and with them know how they did it, so that they *can't* kill someone else in the same way (Read more here).

What's done with the recommendations now is in the hands of Canada's auditor general, and Canada will be watching. I hope that you will be, too.

This article says it all better than I ever could.

Rest in Peace, Ashley Smith

In this video, Ashley Smith has a candid conversation with guards as she was being transferred to the Philippe-Pinel Institute in Montreal from the Regional Psychiatric Centre in Saskatoon April 12, 2007, six months before her death. Rest in peace, Ashley - I won't forget again.

Friday, 13 December 2013

Winter Is Back...Now, a Word About Snow and Wheelchair Ramps...

Like so many communities across Canada and the United States, the small town in which I live got a lot of snow this week. A lot of snow. And I'd like to talk a bit about snow and outdoor wheelchair ramps.

Let's start with snow. I don't like snow. I can take being cold. I don't like it (as the many people who've heard me complain about this week can confirm - did I mention that it got really cold this week too?) but I can take it. Snow's another animal.

I still find it difficult to get around when it snows. I've seen that even people my age without disabilities find it difficult to navigate snow. Snow gets deep. Snow hides ice. Snow melts off footwear and leaves the the linoleum floors in the stores wet and slippery, no matter how hard the staff try to keep the floors mopped up and safe for walking.

And snow piles up on wheelchair ramps and then becomes trampled into packed snow and ice, making them not only next to impossible to use (especially for those in a manual chair), but a hazard for anyone using the ramp.

I've talked about this before, but now that winter is truly upon us, it bears repeating.

Wheelchair Ramps - When It Snows and Snows

In many places in Canada and the United States, it snowed and snowed and snowed on Wednesday on Thursday. Anyone intent on keeping a wheelchair ramp clear would have had to go out to clear it several times over the course of the day. On Thursday, I talked to a business that had done just that. Good for them!

And I get that it's difficult for businesses operating with a minimum of staff doing a large amount of work to get out and shovel off a wheelchair ramp a few times a day when that becomes necessary.

It's a logistical challenge, certainly. However, people that need that wheelchair ramp to be clear in order to get into the business didn't ask for the disabilities that make a wheelchair ramp a necessity, and their money is just as good as everyone else's. Business owners need to ask themselves if they can afford to potentially turn clientele away.

And they need to remember that accessibility benefits everyone.

The Case for Keeping Wheelchair Ramps Shoveled

Let's look at a community like the one in which I live:

  • I can think of several people that I see in the town on a regular basis who use either a wheelchair, scooter, mobility aid (or, at any given time, stroller for a small child).

  • A high proportion of the population are seniors who may be more comfortable using a ramp than stairs.

As I've said in this blog before, when I, as a disabled person, see that a place of business is difficult for disabled people to get into and to navigate once they're in it, my immediate reaction is that the business really doesn't want the money of disabled people all that much. I don't need a wheelchair ramp anymore to get into buildings - I can handle stairs, even if they've got some snow on them. But I had to use a wheelchair for over a year, I remember how frustrating it was not to be able to get into a building, and if I see an highly inaccessible set-up I'm inclined to go somewhere else if possible.

Because I'm always mindful too that even if I can use the stairs today, all it could take to put me in a wheelchair again or anyone in my family on crutches (or worse) would be a good fall. And suddenly wheelchair ramps and accessible entrances are very useful even on that temporary basis.

I like to support businesses that get that.

The other case for keeping wheelchair ramps clear is that if a wheelchair ramp is open, people are going to use it. And if there's snow and ice on it and someone gets injured because of it, businesses leave themselves open to legal action. So please, for your own sake, business owners, be prepared to keep your wheelchair ramps clear. Protect your customers and yourselves.

And that's all I'll say about that! Enjoy the winter weather, everyone!

Monday, 2 December 2013

"I Wish I Knew How It Would Feel to be Free"

Wow, I see from my last post that it's been nearly a month since I've been here! I do not like being away for so long. I do have a good...well, a reasonable...excuse, though. Readers from last year may remember that I pulled a disappearing act in November as well. November is National Novel Writing Month - a month where crazy writers like myself from all over the globe set a goal to write a 50,000 word novel in one month. It gets a little hectic, especially since for the last few years my workload in November has gotten progressively larger, but I managed to do write the 50,000 words for the the third year in a row this year, with the support of friends and a couple of weekends where I wrote almost 10,000 words. It's a crappy novel, because I can't edit when I'm writing when you're writing that fast...but I did it!

But NaNoWriMo is done now, and it's time to get back to important things that I've let slide - the blog, Facebook and Twitter updates, and commenting on other peoples' blogs. I miss writing here and I want to get back to it.

Lots of things happened in November that I immediately thought that I needed to blog about: John Elder Robison's departure from Autism Speaks, the recent FBI findings about the surge in disability-related hate crimes in America, and a particularly disturbing story about the bullying of autistic child that I did link to on the Facebook page. There's been no shortage of stories that have caught my attention.

But today it was a post from fellow blogger Roya Rafieyan that both caught my attention and brought tears to my eyes.

I've written about Roya before. She's a music therapist in an institution for intellectually disabled people. I'm fascinated by her work and so thankful that she's there to give people who often have a great of difficulty communicating and who have very little control over their lives and choices a chance to express themselves.

Roia was talking in her blog about the challenges of working with an autistic man who doesn't communicate using speech:

"I think, understandably, his feelings about communicating and being heard are deeply conflicted. Even if he were to begin pointing at more words and letters to communicate, the likelihood he'd be listened to is...well...slim. The people in his life are largely committed to seeing him as severely disabled. Period...Aside from trying to come to terms with the whole idea of actually communicating with me and having me understand him- overwhelming in and of itself for him, I think- there's the fact that it probably won't change his life in any appreciable way."

I've thought about Roia's blog all day, and why it affected me so much that I burst into tears after I read it. And even going back and reading it now, I feel tears coming again. It's puzzling to me, because I am certainly in a different place in this man - I can make myself heard and understood. I can take actions that change my life. I am not in in an institution where I am told what to eat and when, when to get up and when to go to bed, who will be my support system (whether I like it or not)...

But when Roia talked about how her interactions with this man brought to mind the lyrics of  Billy Taylor's, "I Wish I Knew How it Would Feel to be Free", I found myself wanting to cry again

Because sometimes I do feel like my disabilities, and some of the ways that they've come to impact my life, in ways too personal to put out in a blog, have left me stuck me in spaces out of which it's difficult to move. It's a different sort of "stuck" than Roia's client experiences - less visible, despite my physical disabilities. Less visceral. I think that up until just recently, if I'd thought about it carefully, I'd have dismissed my experience as less valid -  and maybe it is.

Or maybe it's just different. I'm not quite sure yet.

But I don't feel very free most days, these days.  Sometimes it feels like, no matter how hard I try to position myself so that maybe some I can feel that way, it won't happen. It feels like I've entered another cycle where my disabilities feel like a weight...not something with which I'm at peace. I don't like being there again.

But then again, maybe this has nothing to do with disabilities. Maybe this is how everyone feels by the time that they're my age and it's time to just suck it up and get on with it. :)

I'm writing a second book about disabilities, by the way. This sort of thing's going to come up in it, I already know...

It's nice to be back. I hope you're all well.

If you'd like to read Roia's blog (and I highly recommend that you do!), you can find it here:

(By the way...please don't take this post as trolling for sympathy. I'm perfectly aware that I've got it waaaaaay better than most people in the world. Just trying to work some things out...)

And for more information on National Novel Writing Month, in case you'd like to write with me next November, visit their website.

Wednesday, 6 November 2013

Disney Rolls Out Disability Access Service Card

In response to the abuses of the Guest Assistance Card, Disney has changed its policy on accommodation for disabled people who can't stand in ride lines at the Disney theme parks in Florida and California. The new Disability Access Service Card is getting, at best, mixed reviews.

The Guest Assistance Card allowed visitors who couldn't stand in long ride lines because of a disability, and their guests, to skip most or all of the line. The program was being abused - a business had even sprung up in Florida where families could hire a disabled person for a day to travel with them through the park so that they could take advantage of the Guest Assistance Card. Read more

Disabled people still don't have to wait in line with the Disability Access Service Card. They go to an attraction, and are given a time to return based on current wait times.  They can only have one time reserved to return to any given attraction at a time. So it's like they are waiting in line, they just don't have to physically be in line. They don't lose their time if they return late;  they can return any time after. The disabled party does have to be with the group in order for anyone in the group to on the ride.

I have to give Disney credit. I think that the Disability Access Service Card is a reasonable attempt to make sure that everyone gets treated fairly in their parks and that it will likely cut down on the sort of fraud that was becoming especially problematic. But is it a step toward treating everyone equally? I'm not so sure, and neither are many parents. Read the many comments on this article.

The Disability Access Service Card and "Fair"

I know that *far* from everyone on society agrees with me on this, but I've come to view people being treated fairly as everyone having the same access to the things that they need that will allow them to succeed (however a person defines "success"). And I think that it's a reasonable assumption that a successful day at Disney world for any child is one in which the stress level is reasonably low and the fun level is high.

Of course, Disney can't realistically *promise* a low-stress, fun-filled day to anyone, but obviously both the Guest Assistance Card and the Disability Access Service Card were recognition that they need to provide accommodations to disabled people so that they have as close to that sort of day as possible. But parents of autistic children in particular are saying that the Disability Access Service Card doesn't make a day low-stress or high-fun. For autistic children who can't handle the neurological overload involved with "We can't go back to the ride until 2 pm" any better than they can handle the sensory overload of standing in line, parents say that it's potentially a very, very long day of managing behaviours that are stressful to the child, family, and to those around them for the chance to get on as few as 3 - 5 rides.

While I haven't heard much about the experience of  families with children with physical disabilities or families with a member, adult or child, that has a condition involving high levels of pain or fatigue with the Disability Access Service Card, I can see how it could be of little use to these families as well. If, 90% of the way through a 2 hr waiting period for a ride, a family member's pain becomes too much to bear and they have to leave the park to go back to the hotel to rest for the rest of the day, the rest of the family can't go on the ride at their assigned time. They've lost the the almost two hours that they "waited" in line - plus the time that they'll have to wait in line now, if it's ride on which they really want to go.

Plus, having scheduled ride times somewhat eliminates the spontaneity that families without disabled members get to enjoy during a day at Disney. A family without the Disability Access Service Card can decide after waiting a bit in line, "This isn't worth it," or "We'll come back later", step out of line, and line up somewhere else without a lot of fuss. Although the procedure by which families using the Disability Access Service Card isn't oulined in Disney's literature, it's presumably a bit more complicated and involves a trip back to ride in question, which could add stress on a disabled individual for which the day is already going to be physically/emotionally straining.

Should Disabled People Be at Disney if They Can't Handle The Stress?

A lot of people will say that they shouldn't. I think that's easy for people to say, and I don't agree.

It's not like autistic people choose to be easily overwhelmed, or that people choose to be in a wheelchairs or live with chronic pain or fatigue, or to have mental conditions that cause moments of anxiety or fear at a place like Disney.

When we start saying, "These people should stay away because of this," where do we draw the line?

Kids are kids and Disney is a marketing genius. Disabled or not, most kids at some point want to visit a Disney theme park. I'm a disabled adult with no particular interest in going to Disney World again, but if I got the chance to go with my niece Gillian and her family, I would in a heartbeat just to see Gillian enjoy it. I'd be eligible for Disability Access Service Card, but I could probably get along without it, and I think I would and risk being exhausted the next day...because it sounds like it would hold me back more than help me, honestly.

But if I was still at a point in my recovery where I knew that a day at a Disney theme park was going to be physically very stressful, but I wanted to go anyway, to enjoy the experience with my niece...would it be wrong for me to go?

The Disability Access Pass: Some Things to Consider

If Disney stays with the policies of the Disability Access Service Card, perhaps they can consider some supports in the park, perhaps accessible only to people with the Disability Access Service Card, that will make things "more fair", to augment this focus on everyone getting treated "the same":

  • Quiet areas around the park where a family member can take an autistic child who has become overwhelmed and who needs some time to calm down while they wait for a ride.

  • A few areas where a person who isn't necessarily in a medical emergency, but just in pain or who needs to rest can nap in a chair or bed until they feel ready to return to  the park (as opposed to having to leave the park to rest)

  • Flexibility on the rule that says that the disabled person must be present to get on a ride at the scheduled time, for cases when the person legitimately cannot return to the ride.

Any other ideas?

Sunday, 27 October 2013

Pat Robertson Proves How Off-Base He Is About Disability

Perhaps I should start my commentary on this story by admitting my biases, particularly about Pat Robinson.

I was once a Christian, but I'm not anymore. But  when people asked, when I was healing after my stroke, if they could pray for me, I never said no. Who am I to say that it doesn't help? I don't like the spin on this school of thought that summarily dismisses medical intervention as a way through God might healing a person, but I've never personally come across someone who believes this (as far as I know).

And as for Pat Robertson...I just plain don't like him, The homophobic, victim-blaming, ignorance that he spews reminds me of Ken Swanson and makes me want to have nothing to do with a God that he claims to be serving.

Knowing the kind of things that Pat Robertson is famous for saying, I wasn't too surprised at his recent reply on The 700 Club to a mother that her child was deaf because she was praying wrong. It annoyed me, as Pat Robertson's pronouncements generally do, for a couple of reasons. But the whole thing made me sad.

"I Have Prayed for His Healing"

This is something that we keep coming back to again and again, isn't it? This idea that disability is something that needs to be cured or healed. Mia Mingus, recently honoured by at the White House as a Champion of Change, writes about it in "Wanting More and Finding Disability Justice":

"Disability was always framed as a sad or bad thing, as something unfortunate that happened to me, a tragedy, a flaw. My experience with the medical world was one about “fixing” me and making me more “normal” and less disabled. This of course, echoed my experience of the world at large. I never saw disabled women in the media being desired or living whole complex lives, let alone disabled women of color. The messages always boiled down to: disability is wrong and undesirable."  Read More

Granted, I think that the idea that disability doesn't have to be looked at as something to be cured is a relatively recent idea, and not one to which people generally get a lot of exposure. Parents of disabled children certainly aren't getting it from the medical establishment. They're not getting it from the media. Hopefully they're getting it from support services to which they're referred, but it's becoming very difficult for families to get support services.

So I don't want to shame this mother. She gets enough of that from Pat Robertson in his next sentence.

Pat Robertson Chose the Wrong Direction

I don't expect Pat Robertson to give a discourse on how disability is too often treated as a negative and how we need to start questioning that.

I didn't expect him to say, (paraphrased) "Well, I've prayed like this before and it worked for me...I don't know what you're doing wrong..."

Seriously? This is his idea of helping?

What I *wish* he would have said, perhaps after "Well, I've prayed this way to heal deaf people and it's worked for me", and instead of "I don't know what you're doing wrong," is something like: "As you pray, are you considering what his doctors say about his deafness? Are you and your family learning sign language? What are you doing to make sure, if it's not God's will that your boy get his hearing back, that he has as a great life as any hearing child?"

That would have made the whole thing a lot more palatable for me, and kept Pat Robertson out of my blog. For the moment, at least.

Pat Robinson and Responsibility

I don't like people who don't use their power responsibly. Pat Robertson knows that people are going to listen to him and take what he says  (pun intended) as Gospel. That he shamed a mother who was desperate enough about her situation to write into a television show by telling her that her that her deaf son isn't becoming hearing (the way so many influences tell her he should be) because she is praying wrong  (adding  nothing else in the way of advice but "try something else", to add insult to injury)  makes me feel ill.

And those of us that know that disability shouldn't be considered wrong, or undesirable, or something that needs to be "fixed", "healed", or "cured" need to keep talking. This is a message that needs to be spread.

Saturday, 12 October 2013

Matthew Shepard: 15 Years Later

Do you remember where you were when you heard that Matthew Shepard had died?

I do. It was fifteen years ago today, when I was a freshman in university. I was in my room in the dormitory (we call them "residences" in Canada), working on an essay. The radio was on. I heard the story that Matthew Shepard had died in the hospital, and my heart dropped into my stomach.

I'd been following the story all week, ever since I'd heard that the 22-year-old Wyoming University student had been found burned, pistol-whipped, tied to a fence, and suffering from exposure to cold temperatures for 18 hours. The story had hit close to home because it was suspected that Matthew Shepard's attackers, Russell Henderson and Aaron McKinney, had targeted him because he was openly gay. Being raised in a small town where several friends had struggled with the decision to come out, and seeing what some of them had faced once they did, I knew that Matthew Shepard's decision to be openly gay in the small town of Laramie, Wyoming was potentially risky. But it had never occurred to my young, naive self that someone might actually kill another person over their sexuality.

It scared the crap out of me, and filled me with a sadness that that I couldn't express. And I still get those feelings every year, on the anniversary of Matthew Shepard's death - the day that my belief in the world as a safe place for people who are different died too.

I wish that I could say that I've had a thousand experiences since then that have gone a long way to convince me that the world is safe for people that the world labels "different" - for LGBTT people, for people in racial minorities, for disabled people - but I haven't. Quite the contrary, actually.

University of Mississippi Students Heckle Matthew Shepard's Story

Matthew Shepard's story has  been made into a play called "The Laramie Project". It was recently performed at Ole Miss for an audience of almost exclusively freshmen attending as a course requirement.  A group of approximately 20 football players (as well as some other unnamed individuals) reportedly heckled the performers, shouting gay slurs and laughing inappropriately (at a funeral scene, at one point).

The entire audience was required to attend an education session about why the slurs were wrong.

In the case of the football players, I don't think that went far enough. They're varsity athletes - they're ambassadors for Ole Miss, whether they like it or not, and whatever their feelings about homosexuality are, at that age they're old enough to take responsibility for what happened here.

At the very least they should be held accountable for acting inappropriately in a theatre performance. They were rude and distracting for both the actors and other members of the audience. Perhaps, as actor Garrett Gibbons says he was told, this was a first theatre experience for some of them and they didn't know what to expect or how to behave. But that shouldn't absolve them from taking responsibility for inappropriate behaviour.

The athletes also need a bigger consequence for using  "borderline hate speech" (as Ole Miss officials called in in their apology) in a very obvious way in a public venue. In my opinion,   "fag" and "faggot" should be hate speech, but I guess they aren't officially considered such. Anyway, in a situation like this where even "borderline hate speech" is involved, I call bullshit on letting anyone, especially students who represent a university, get by with no consequence but a learning session. Representing a university in any capacity is a privilege, not a right, and if you use that privilege to spread hateful rhetoric then that privilege should be taken away from you.

Ole Miss should honour Matthew Shepard's memory and show its true commitment to making the university a place where all students can expect to feel safe and included by kicking these players off the team.

Fifteen years.  The movement for equality, for so many oppressed groups, has come so far...and yet still has so far to go.

Rest in peace, Matthew Shepard.

Read more here

Friday, 4 October 2013

Ontario Government Settles with Former Residents of Huronia RegionalCentre

In Ontario, former residents of the Huronia Regional Centre have been vindicated...or have they?

The class-action lawsuit against the Ontario government, launched by lead plaintiffs Marie Slark and Patricia Seth, was settled recently before it even saw open court. The government offered $35 million and a formal apology to intellectually disabled people who resided at Huronia Regional Centre between 1945 and 2009. There was much for which the government needed to apologize about how it managed the facility, although it claimed in its court defense that "there were incidents of abuse, but insists these were isolated and did not stem from neglect." Read more here

Life at Huronia Regional Centre

I wrote here about Huronia Regional Centre and about the atrocities committed on its grounds that have given it such notoriety. In "The Gristle in the Stew", a documentary about Huronia Regional Centre that aired on CBC radio, the lawsuit's lead plaintiffs talked about the following:

  • Being dropped off by my family at a strange place and being told by them that I'd be there until I died (Patricia Seth).

  • Being locked in cupboards

  • Having my head held under hot water (Patricia Seth)

  • Being made to lie facedown on the ground for punishment and having people step on my head if I turned my face. (Marie Slark)

  • Being turned upside down and held by my legs while water was run over my face (Patricia Seth, who says that this felt like she was drowning).

  • Being overmedicated

  • Having teeth removed for "safety" reasons

  • Being made to walk around the playroom with pants pulled down as a punishment for misbehaving.

  • Being told that if they tried to report any of this, they'd be punished, and that staff would get the other kids to abuse them.

Listen to "The Gristle in the Stew" here.

The Toronto Star published an essay by Canadian author Pierre Berton, written in 1950, that gives an idea of what the physical environment at Huronia Regional Centre was like. In it he talks about seeing beds everywhere, sleeping the residents head-to-head and sometimes less than a foot apart, the lack of fire-proofing and the general disrepair of the buildings, the "appalling" smell, and the  floor where one bathtub served 144 people. He tells a story about a resident who died in the infirmary while the nurse was called away to help with a fire evacuation in another building. Read more here

The government said that when abuse happened at Huronia Regional Centre, it was dealt with promptly and properly, and that residents were treated the best way in which staff knew how at the time. Read more here However, lead lawyer for the plaintiffs Kirk Biert said that the government's own documentation would win the case.  The 65 000 records that his legal team collected, the "letters from distraught parents, bureaucratic memos, ministerial directives, police reports, eyewitness accounts, coroners’ reports, inspectors’ reports, newspaper exposés and the findings of three provincial commissions of inquiry" told the story. Read more here

Is The Settlement a Victory?

These records will go to the Ontario Archives, but will be difficult to view because of privacy information laws. And because the suit didn't go to full trial, they weren't heard.  The stories weren't told. Read more here

While the concern about privacy is valid in that some of the records contain names of residents who are still alive, this doesn't apply to all of the records. And, as evidence in a trial, they should legally be public documents, not something that someone who, say, is doing research on the facility needs to file a request to see only to be told that they can't or to be given only some of it.

It all smacks of there being something in those documents that the government doesn't the public to be able to easily see.

And while $35 million seems like a lot, it only works out to $42000 per person. That's really not very much, granted that the suit was originally filed for $1 billion and many people were in Huronia Regional Centre their for most of their lives.

It's "Get them out of our hair" money. It's, as  Doug Turner, twin brother of former Huronia Regional Centre resident Tracey Turner says, "hush money". Read more here

Forgotten Children: Huronia Regional Centre's Legacy

"They stole our  childhood," said Marie Slark. Patty Seth said that being in Huronia Regional Centre was like being imprisoned, with the added terror of not knowing when you were going to get out. Read more here

Parents were encouraged to send their disabled children to Huronia Regional Centre and places like it and to forget that they existed. These forgotten children grew up in an environment where they had no rights and no one to go to when the people that were supposed to be taking care of them put them in danger.  Those that died at Huronia Regional Centre (over 2000) were buried on site grounds - 1440 of them are in graves marked only by numbers. For a number of reasons, we'll never know who is buried in many of those unmarked graves. Read more here

It's a dark, dark mark on Canada's history, but one that most Canadians have never heard about. We're not taught about in school. I'm astounded by how many people work with intellectually disabled people in Ontario without knowing about Huronia Regional Centre's history, given that many people who used to live in the facility are now living in communities and supported by agencies. The government eventually started to moved people out of the facility, discovering that it was actually cheaper to have people supported in community settings. By the time that the institution was officially closed down in 2009, all but the most severely disabled of the residents had been moved out.

I've never supported anyone who lived at Huronia Regional Centre in those mid-twentieth century years who talked very much about it. I often wonder how the former residents do as well as they do given what they've most likely lived through.

The image of the numbered gravestones on the Huronia Regional Centre grounds sticks with me. In these times of vital supports being cut (particularly in England, with the ongoing austerity measures), stories of blatant discrimination such as the hiring policies at Goodwill, and disability hate crime, it sometimes feels like we haven't moved far, on a social level, from a time when society saw disabled people as faceless entities who don't need or deserve to be anything more than a number on their tombstone. Perhaps this why Marie Slark was insistent that she wanted an apology from the government for what they did as well as the money. Read more here

And why not? She deserves one. Everyone who was in Huronia Regional Centre deserves one.

Skeptical Me

I'm not convinced about the sincerity of any apology that's made because a court mandates it. I guess it's a start.

But I just can't make myself feel as happy about the outcome of this lawsuit as I feel like should be. If the government actually cared, it would not have let the abuse that went on in Huronia Regional Centre go on for over half a decade. It would not have let the residents live in conditions of disrepair and squalor. It would not have denied for so long that what was going on was actually going on. It would acknowledge that a sum of $42000 per person is not compensation for decades of state-sanctioned torture.

It all seems like such a deviation from what a government's priorities should be - to ensure that the most vulnerable among us are kept safe - that I just can't wrap my head around it.

I like to think that things are getting better for disabled people, but some days it seems like there are still so many reasons to fear.

Thursday, 12 September 2013

Rose Byrne Poses a Weird Disability-Related Hypothetical...and Annoys Me

So, I recognize that "Conan" may not be everybody's cup of tea when it comes to television, but I generally find it quite funny. Conan O'Brien has always appealed to that darkish, slightly juvenile side of my sense of my sense of humour that also likes movies like "The Hangover" and pretty much all of Will Farrell's run on Saturday Night Live. Trouble is, "Conan" is on awfully late and recently I've been going to bed - and getting up - very early. But today I discovered that he's on one of the music channels during the day, so I tuned in, and heard his interview from September 11 with Rose Byrne.

And thought, "Oh yeah, I'm blogging about this."


Rose Byrne Poses a Disability-Related Hypothetical

I didn't recognize Rose Byrne, although, according to her IMDB profile, she's done a number of movies and television series with which I'm at least familiar. She seemed very pleasant and quite intelligent. The "blog-worthy" comment came when she talked about visiting Fire Island with her boyfriend recently. In response to Conan's question about how there wasn't much to do on Fire Island, Rose Byrne said that she'd played "Would You Rather?" with some girlfriends.

I'd smiled at that point, remember a game of "Would You Rather?" on a girl's weekend a few years ago that had gotten a little raunchy. But even with that memory in mind, I wasn't prepared for her talking about how they'd debated this question: "Would you rather have one arm for the rest of your life or have a beard for the rest of your life of your own pubes?" (Pubic hair)

Conan answered "Beard of pubes, of course," but changed his mind once she clarified that you can't shave them off.

It's a ridiculous question, of course. But I think that it's ridiculous that "this was a tough one" (direct quote) for them, that we're still living in a society where the loss of one arm is looked at as something too terrible to contemplate except in the context of a ridiculous hypothetical. What does that say about how society looks at people who only have one arm? What does it say about how they look at people with more severe disabilities?

I didn't lose an arm. My left hand is pretty much non-functional, but I can still use my left arm as a brace, an anchor, and even to hold things in a very basic way. So I can't truly speak for people who only have one arm. But when I heard Rose Byrne pose her hypothetical, I thought, "Are you kidding me? If you only had one arm, it'd be difficult at first, but you'd get used to it, and then you'd realize what the rest of us have: your body may be missing an arm, but it's society that's made you disabled. And maybe you'd realize that it's the attitudes behind hypotheticals like yours that contribute to that."

Deep Sigh...

I can't be too irritated with Rose Byrne, because maybe she's never been around disabled people and truly seen them out there living exciting, fulfilling lives. But sometimes I just wish there was a "Reset" button that we could press that could quickly put all the misconceptions to rest, once and for all.

But nothing worth working for comes easily, or something like that. Thanks for working with me...

Thursday, 29 August 2013

Court Decides That Disabled Man is to Have a Vasectomy

A court recently decreed that a disabled man in Britain be given a vasectomy for because it's in his "best interests".

The man in question, known in the media as DE, is described as having "severe learning disabilities." I'm not a qualified diagnostician, but given that his reported IQ is around 40, I'd venture a guess that his diagnose goes beyond learning disabled to intellectually disabled (the media does tend to use these diagnoses interchangeably, although they're quite different.)

DE is 36, lives with his parents, and has a girlfriend with whom he's been for several years (and who also, according to the media, has "severe learning disabilities.") The two had a child together in 2009. DE has said that he doesn't want more children. His parents and his doctors petitioned the court to force DE to get the vasectomy on the grounds that he doesn't have the mental capacity to agree to it, and the judge agreed that a vasectomy was "overwhelmingly in his best interests." Read more here 

Several experts testified at the hearing, and the judge said of the order that DE get the vasectomy: "...the court does not make such an order lightly, conscious as it is that for the court to make an order permitting the lifelong removal of a person’s fertility for non-medical reasons requires strong justification." Read more here Here are some of the things that I hope were considered.

DE's Vasectomy: Consent Issues

Experts at the court hearing testified that D.E. has the capacity to consent to sex. Yet, the Telegraph reported that DE's mental age is between 6 and 9. Read more here I don't know what the absolute minimum age where any kind of for sexual activity is in Britain, but I doubt it's much lower than Canada's age, which is 12 years old when the other party is less than two years older and not in a position of authority Read more here .  I recognize that DE is legally, because of his age, an adult, and that these tests of mental age aren't always accurate. But it's incumbent on the people surrounding both both DE and his girlfriend to make sure that they understand the physical and emotional issues surrounding sex, to ensure that the dynamic is appropriate and non-abusive, and that they understand, to the greatest extent possible, the need for contraception and protection against disease.

The fact that DE won't use condoms is indeed problematic. However, assuming that these two are a monogamous couple, this wasn't the least invasive alternative. An IUD or a monthly injection for his girlfriend is more effective than a condom, doesn't require keeping track of a pill each day,  and would still leave both the option of having another child if they ever chose to. Was this investigated? If not, we've add a weird little layer of sexism onto this that really didn't need to be there.

And, if the couple is non-monogamous, a vasectomy won't protect them against disease.

Bottom line, however, if experts feel that this man is able to consent to sex, and clearly doesn't want to experience a consequence of sex, then he should be able to consent to an operation that will prevent that consequence. I find the court's ruling on his capacity very confusing.

DE's Vasectomy: A Slippery Slope

Are we ever not on a slippery slope when it comes to this sort of thing?

These two weren't using condoms (at least not consistently, obviously, because they have a kid that his grandmother is now raising.) I heard constantly growing up (and constantly told the kids that I used to work with) that if they can't talk about protection with partners and be responsible about it, then they need to consider whether they're really ready for sex. And I'd probably tell these two exactly the same the same thing. But I'm sure they heard that from a variety of people, as many teens (and adults) who end up with an unexpected pregnancy do because they...just didn't use protection.

However. We don't forcibly sterilize non-disabled people who chronically won't use condoms while they talk about how they don't want children, after they've already fathered a child that they can't support. We don't bring courts in to determine whether sterilization would be in the best interest for them, their psychological health, and the continued well-being of their relationship. Read more here

We allow people who make these sorts of decisions to continue to have control over their sex lives and their reproductive faculties, and say to them, "If you're going to make these choices, you have to live with the consequences of these decisions. Here are your options if you want to avoid those consequences." We even have services in place to deal with what happens when people continue to have unprotected sex because they, say, don't like condoms. And while I find it very difficult to understand why people can be cavalier about unprotected sex, that's not really the issue right now.

The issue is that this particular person who was being cavalier about unprotected sex was sterilized.

And now we have to ask, where do we start making the exception? A comment on one of the articles suggested that everyone with an IQ under 80 be forcibly sterilized. I've worked with people who's IQ's were significantly below 80 who could clearly explain to me that they always needed to use a condom when having sex to prevent pregnancy and disease. And I've heard people with IQ's significantly above 80 talk about having habitual unprotected sex. So I'm not buying that.

DE's Vasectomy: Not a Good Precedent to Set

The judge said that rulings like this will be made on an individual basis, but I'm not comfortable with that. I'm uncomfortable with this double standard for how we treat non-disabled people vs disabled people, and I'm uncomfortable with the idea that the court has been officially been empowered to compel someone to undergo a sterilization procedure.

I'm seeing a lot in this case in this confuses me, and I hope it's because we just haven't been privy to the debate that went on behind the scenes, and not because all the issues weren't explored thoroughly. The stakes are just too high one this one.

Monday, 12 August 2013

Jenny Hatch's Victory

I'm a little late to getting to Jenny Hatch's story, but I thought that it deserved a post. Not just because I'm so happy for Jenny that after her fight drag out in the courts for a year, she got the outcome that she wanted, but because I agree with Dave Hingsburger that hers is a ground-breaking case (Jenny and Eve and the Statistics of Freedom).

Any attorney worth their salt, when asked if they really think that an intellectually disabled client can truly understand what's at stake in a case involving their life (like a competency hearing or a guardianship dispute) can now point to Jenny Hatch's case and say that if there's any question about that, then there's at least the responsibility to take the time find out before jumping to conclusions about the client's level of understanding.

Because Jenny Hatch certainly understood, and was very clear and very consistent.

Jenny Hatch: Background

Jenny Hatch is 29 years old and has Down Syndrome. Her court battle began when her mother and stepfather filed for and were granted temporary guardianship of her. Jenny had been living with friends Kelly Morris and Jim Talbert, who she'd met when she started to work at their thrift store in 2008. She had to leave their home and go live in a group home that her family chose. (Read more here)

The Washington Post reported that the relationship between Jenny Hatch and her mother was "contentious" even before these present stressors were put on it.  (Read more here)

At the court proceedings, ADA expert Peter Blanck testified that the family's petition for guardianship probably the most restrictive he'd ever seen, "a complete removal of all decision making for the individual..."  Jenny's mother and stepfather wanted the right to decide where she lived and who she saw, and to make medical decisions for her.  (Read more here)

Jenny Hatch: The Court Case

Jenny Hatch's case was complicated for a number of reasons: There was an abuse allegation against Jenny's mother (Read more here), and there were questions as to why the family wanted guardianship so badly when they'd said in the past that they weren't able to handle Jenny's needs  (Read more here). But, when you strip it all down, as the Washington Post rightly points out, the case came down to two questions: 1) Was Jenny Hatch a legally incapacitated person who required a guardian? and 2) If so, were her parents or Morris and Talbert the more appropriate people to be her guardian? (Read more here).

On August 2, 2013, the judge decided that Jenny could benefit from  guardianship for a year, with Morris and Talbert as guardians. She will live with them for the year, but after the year is up - it's all up to her.

I actually think that's a good way to work it out.

Jenny Hatch: Thoughts and Best Wishes

I understand Jenny's family's concerns about her safety. I've seen some of the behaviours that they cited as concerns for them as behaviours in people that I've supported that have concerned me  (particularly the tendency to kiss and hug inappropriately or to engage in inappropriate behaviour with members of the opposite sex, which court documents said were concerns of Jenny Hatch's mother  (Read more here). I understand that sometimes putting more and more restrictions on a loved one with a intellectual disability looks like the best way to keep them safe, or that increasing reliance on the behavioural expertise of professionals looks like the best way to deal with someone that chronically lies. I don't have a daughter with a disability, but I have had (still have) people with intellectual disabilities in my life about whom I worry, whose well-being concerns me, and who I sometimes wish that, God damn it, I could wrap in cotton wool and protect from a world that seems so very dangerous for them. But that wouldn't be fair to them, because:

"I make my own decisions," Jenny Hatch told her attorney. "Not you." (Read more here)

And that's why, if the judge saw fit for Jenny Hatch to have a have a guardian for a year to safely work on the hard and soft skills that she'll need for whatever life that she chooses as an independent adult, I like that guardianship went to Kelly Morris and Jim Talbert.

Jenny didn't want the life that her family wanted for her. The close control that her parents' guardianship gave them took away the life in the community that she enjoyed so much: her job, her friends, going to church, participating in the Special Olympics, and being a part of life at Republican headquarters in her town  (Read more here). Talbert testified that Jenny Hatch told him that she hated the group homes, that they treated her like a child, and that she'd keeping asking him to come get her (Read more here)

Jenny Hatch actually ran away from four group homes (Read More Here).  She wanted to live with her friends. She told the court repeatedly that she didn't want guardianship. Her lawyer has a note from her: "I don't need gurdenship anymore...Yes, I need help...only Jim and Kelly." (Read more here)  He also has sign that she made and hung on the wall in the group home for a period: "Bring My Freedom of Choice Back. Bring My Job Back." (Read more here)  For their part, Morris and Talbert threw their full effort into supporting her through this court battle from the very beginning...but it hasn't necessarily been about getting her back into their house, even though that was something that they'd obviously loved to have seen.

That's something that I respect to a tremendous degree about them:

“It’s about her right to choice,” Morris told the Washington Post. “If she chooses, I want to live with Jim and Kelly and then, six months down the line, she decides ‘I want to live in an apartment,’ that is fine. If Jenny wanted to live in a group home and made that choice on her own, we wouldn’t be where we’re at.” (Read more here)

I hope that Jenny's family can get to the point where they can see that the restrictive guardianship terms that they proposed wouldn't have been fair to Jenny, and that they would have made someone as involved in her community as she is very unhappy.

I hope that they can be happy for Jenny as she starts her life.

And I hope for Jenny that her life is everything that she wants it to be.

Congratulations, Jenny Hatch. You're a remarkable woman. I'm so happy that all this has worked out for you.

Thursday, 1 August 2013

Amelia Rivera Update: Home with a New Kidney!

I've been covering the story of Amelia Rivera and the Children's Hospital of Philadelphia's (CHOP) refusal to give her a new kidney since her mother Chrissy Rivera blogged in 2012 about her belief that CHOP had refused the transplant because Amelia has an intellectual disability. Well, there's a happy ending to this story. Doctors at CHOP performed the transplant July 3, using a kidney that Chrissy Rivera donated.

Amelia Rivera and CHOP: The Timeline

Amelia Rivera has Wolf-Hirschhorn syndrome, "a chromosomal disorder affecting about 1 in 50,000 people that’s marked by the presence of intellectual disability, developmental delay, seizures and distinct facial characteristics." For those that haven't been following this story, or who need a review, here's a timeline of the events in Amelia Rivera's story:

  • January 2012 --> Chrissy Rivera blogs about an appointment at CHOP where a kidney transplant was discussed. She talks about seeing a paper that called Amelia Rivera "mentally retarded", and describes a conversation with a doctor and a social worker where she was told that Amelia was not a viable transplant candidate because of her intellectual disability. Read Chrissy Rivera's blog here. Over 40,000 people signed an online petition calling for the hospital to reverse its decision.

  • February 2012 --> CHOP apologizes for how Amelia Rivera's case was handled and agrees to evaluate Amelia for a transplant, insisting that it doesn't discriminate on the basis on intellectual disability. 

  • August 2012 --> CHOP clears Amelia Rivera for a transplant, with Chrissy Rivera as the donor. Read Chrissy Rivera's blog here.

Chrissy Rivera's most recent update, posted on July 30, tells of how she donated her kidney to her daughter on July 3. Mother and daughter were released from hospital on July 12 and both are doing well.

Amelia Rivera and My Sadness

I am so happy that CHOP came around and that Amelia Rivera got the life-saving surgery that she needed. After all, she was only three years old when all of this began. I am saddened, however, and angered, that Chrissy and Joe Rivera had to fight so hard to get Amelia this surgery to begin with.

I'd been working with intellectually disabled people for almost twenty years when I started this blog, but I was terribly naive in many ways. The doctors with whom I'd had to work when I was supporting people had been great - I'd always been satisfied that the people I supported (of whom I'm very protective) were getting the same quality medical care from their doctors, specialists and surgeons that I was getting...that anyone was getting...and after my stroke, I was fairly experienced with doctors and with medical advocacy.

But still naive.

Learning that there are members of the medical establishment who are confident enough in their assumption that an intellectually disabled person can't have a good quality of life or contribute to society that they'd deny a three-year-old a life-saving transplant was a real eye-opener.

And just in case you think that this sort of attitude is an isolated incident, here are some other stories that I covered that were eye-openers for me:

AWA: Shocking Story of Ableism by a Hospital

Paul Korby Denied Heart Transplant; Autism Cited as One of the Factors

Protecting Babies with Down Syndrome

Let us be ever mindful that there's still much work to be done.

But for today...

...let's celebrate with Amelia Rivera and her family. I couldn't be happier that this story has turned out so well.

Wednesday, 24 July 2013

Willie Forbes, Fish Fingers, and a Discrimination Debate

I recently read about an alleged incident of discrimination against Willie Forbes, a man with Down Syndrome, that I found interesting. Willie Forbes' story comes to us from a restaurant in Inverness, Scotland, called Ash. Ash adjoins the Royal Highland Hotel.

The discrimination allegation comes from the fact that the restaurant refused to serve Willie Forbes, who is 47 years old, fish fingers off of the kids' menu. Willie Forbes' niece, who was with him at the time explained to the waiter that Willie Forbes had Down Syndrome and could only eat small portions. The regional manager for the hotel chain, Indranil Banerjee, said that the restaurant offered Willie Forbes a smaller portion of the fish goujons from the menu's adult meals section, but Willie Forbes and his niece left before the issue could be settled.

A member of the public created a "Ban the Royal Highland Hotel" after Willie Forbes' niece talked about the experience on her own Facebook page. Banerjee explained in an apology on the hotel's Facebook page, after the restaurant started to take some serious flack on social media and in Trip Advisor for its actions, that on Sundays children eat off the kids' menu for free and that they're not able to charge the adult price for an adult who wants a children's meal.

“We see every human being as a human being, but they’re either an adult or a kid, and that is that,” Banerjee told Caterer & Hotelkeeper website.  “The kids’ menu is only for people under 12, as the prices are lower and the portions are very small.”

Well, it's good to know where you stand.

Ash and Willie Forbes: Discrimination or Not?

I didn't think that this was discrimination at first.  Assuming that this policy is being applied uniformly and consistently to all adult diners regardless of their health needs, how could it be? If it's the restaurant's policy that adults can't order off the kids' menu, then no adult should be able to order off of the kids' menu. This includes adults with Down Syndrome or any other type of disability. The management treated Willie Forbes presumably like it treats any other adult that eats in the restaurant on a Sunday. No discrimination here.

Just bad business sense, as people order off the kids' menu in restaurants for many reasons. Even healthy people often find adult-size restaurant meals too large. Seniors often have reduced appetites and can't finish an adult-sized meal. People that are trying to cut portion sizes to lose weight may appreciate the option to order off the kids' menu. Sometimes people just aren't hungry and want a smaller meal.

And why should a person have to have fish goujons in a restaurant when fish fingers is what they actually wanted and is available?

Does it not make sense, in this economic climate where "the customer is always right", that a restaurant should make a small change and find some way to allow adults to order off the kids' menu, granted that it potentially allows the establishment to meet the dining preferences of a wide cross-section of customers? I'd think so.

Just as even a small move toward increasing accessibility makes a business more welcoming for everyone, this seemingly small gesture could actually substantially increase the restaurant's potential clientele.

But didn't I say that this wasn't about disability discrimination? I actually started to rethink that once I read more of Banerjee's comments on this issue.

Methinks He Doth Protest Too Much

Banjeree's also told Caterer & Hotelkeeper, "...waiting staff were therefore unable to pass the request through the till as a meal for an adult, because it would automatically register it as a child’s order and not charge. The kitchen would “not normally” prepare a dish from the child’s menu without an appropriate till ticket,"

So, apparently because it's too much effort to make a notation on a till ticket for a child dish to note that the customer is to be charged the adult price, it's impossible to accommodate an adult that's willing to order off the children's menu, even if they're willing to pay the price for an adult meal.  But apparently it's not too much effort to somehow make sure the kitchen knows to prepare a smaller order of an adult dish for a patron that desires it.

It doesn't make sense.

And the absolute, ultimate refusal of the restaurant to compromise at all on this issue, even though it meant customers walking away unhappy and the alienation of other customers (both current and potential) makes me think that there's something deeper going on here.

It's just speculation on my part. I can't prove anything. Banerjee explicitly said that they weren't discriminating against Willie Forbes.

But I just don't buy it.

I'll let you make up your own mind:

Monday, 15 July 2013

Elsa Henry, Disabled Women, The Abortion Debate, and Texas

A lot happened in America last week that needs to be talked about. But today I think I want to talk about what happened in Texas, and about a brilliant article by Elsa Henry.

To review, legislation that outlaws abortion abortion after 20 weeks and closes all but 6 of the abortion clinics in Texas was pushed through last Friday, after Wendy Davis attempted to stop its passage last month with an 11-hour filibuster and after protests by thousands of women. Considering that the legislation wasn't supported by anywhere near the majority of the Texas populace and it required a special session to get it pushed through, it seems like a slap in democracy's face. Read more here.

Allow me to segue for a moment. I want to talk about disabled women and abortion, and about Elsa Henry.

Elsa Henry, Disabled Women, and the Abortion Debate

Regular readers know that I feel strongly that disabled women need to have a voice in the abortion debate.  There's still a perception out there, particularly when speaking about intellectually disabled women, that they're not sexual beings and don't need (or even shouldn't be given) information about their sexual health. I don't believe that anything is further from the truth. All women should be educated about sexuality and sexual health, at the very least so that they know what abuse is and what they need to do if it happens to them. But, as people who have just as much a right to be involved in sexual relationships as anyone else, disabled women need their sexual education to include information about contraception, sexually transmitted infections, and yes, abortion as an alternative when facing an unwanted pregnancy. They have the right to decide how they feel about that.

It's not like there's never been a disabled women who's needed access to abortion, but you'd never know that by the way that disabled womens' voices are absent from the abortion dialogue. And thank God I'm not the only one who's noticed. A brilliant article by Elsa Henry, "Pro-Choice Should Not Mean Ableist", and the overwhelming response to it when I posted a link to it on my Tumblr blog, gives me some faith that others feel strongly about this.

Elsa Henry and I appear to agree on a number of things (our ideas of how we are both "pro-life" and "pro-choice" being among them), and I'm impressed with how she takes the "pro-choice" camp to task on its assumption that disabled women won't ever be in a position where they'd need an abortion:

"I am tired of the assumptions that I wouldn’t want to be a mother, too. I am tired of the fact that this dialogue has not mentioned once the fact that women with disabilities have the right to have abortions, the rights to access women’s health, the fact that disabled women are raped and impregnated against their will. I am tired of not hearing that women with disabilities need access to reproductive prevention & abortion."

Elsa Henry also brings up another important issue that I hadn't considered. I've seen both the pro-life and pro-choice camps do this, but the fact that the pro-choice camp but uses disabled people as a reason why abortion should exist does put pro-choice disabled women in awfully difficult position, to say the least. I'm surprised that it's never occurred to me to be bothered more by the ableist rhetoric. Elsa Henry makes a strong case for why it should, and I'll certainly be giving it some thought:

"I am a disabled woman. I am pro choice. But every time someone on MY side opens their mouths and tells stories about people aborting their disabled fetuses in order to show why we NEED abortion, I feel sick. I feel betrayed. I feel like my life isn’t worth considering."

Thank you, Elsa Henry, for saying these important things that needed to be said.

Closing Thoughts on Standing with Texas Women

But, getting back to the general issue of Texas. What went on, from Wendy Davis' filibuster to the protests, to Rick Perry's determination to push this thing through, had me riveted. It's another one of those issues that transcends borders for me. I don't care that this has nothing to do with my country; it's a matter of principle, and if I could have joined the women protesting in Texas, I would have. I know that I'm far from the only person in Canada that feels the same way, and we will continue to support any cause that keeps abortion legal and safe for as many women as possible.

Sunday, 7 July 2013

Revisiting The Goodwill Controversy: Slave Wages Aren't Cool

I know that I've posted about it before, but it all bears repeating. After viewing this video about Goodwill, I'm all fired up.

The issue is that Goodwill employs 7000-8000 disabled people in America who, due to a loophole in the Fair Labor Standards Act of 1938, legally don't have to be paid minimum wage. And Goodwill takes advantage of this - some disabled employees get  paid as little as $0.22 an hour. It's all documented.

Goodwill operates sheltered workshops for its disabled employees. Regular readers will know that I'm not a fan of sheltered workshops for a variety of reasons: they promote exclusion and segregation, they pigeonhole people into performing certain types of tasks, they encourage society to  of the work of disabled people, and they're environments in which it's difficult even for staff to assist the people they support to reach their full potential. Goodwill's operation is a particularly good support for the idea of totally abolishing sheltered workshops, in my opinion (one that's shared by the head of the National Federation of the Blind, Mark Maurer, interviewed in the video).

Goodwill and Employment Discrimination: The Thing Is...

Head of Goodwill International Jim Gibbons is disabled himself, so you'd think that he'd understand these issues. But he's got it all worked out in his head about why the sheltered workshop model works for Goodwill and its disabled employees, including reasoning for why a company that could afford to pay him half a million dollars last year and that could afford to pay other executives similarly hefty salaries (including $1.1 million dollars in salary and deferred compensation to the CEO of Goodwill Industries of Southern California in 2011) shouldn't feel badly about paying some of the company's disabled employees less than a quarter an hour.

In the video, Gibbons spoke about people having the right to define success for themselves, about how everything at Goodwill is focused on the workers and "their strengths, their skills, and their abilities" and went on to comment, about Goodwill's disabled employees: "It's typically not about their livelihood. It's about their fulfillment. It's about being a part of something, and it's probably a small part of their overall program."

Gibbons wasn't talking like he was the head of a company whose management model includes large-scale use of sheltered workshops. The language that he was using, about being committed to having disabled in an employment environment that uses their strengths, skill sets and abilities, is the language of the much more progressive person-centred approach to support.

It pisses me off that Jim Gibbons has appropriated this language to describe what's going on in Goodwill (all suggestions appear to be that it's not). It makes me feel sick to my stomach that he's twisted it to imply that the people who are questioning his discriminatory employment practices are the bad guys, because everyone has the right to define success for themselves and for most of his disabled employees their take-home pay isn't their measure of their success as a Goodwill employee.

Meet Me at Camera Three, Mr. Gibbons

Mr. Gibbons, you made $729 000 in 2011 Let's say, for the sake of argument, that you worked 50 hours a week. That's $280 an hour.

The employee that works 40 hours a week at $0.22 an hour has to work almost 32 weeks to make what you make in an hour, as opposed to 1 week at the $7.25 that non-disabled Americans get for the work that they do.

It's easiest to abuse the people who don't know that they're worth more than the treatment they're getting, don't know that anything better exists, or who don't have the resources (which more often than not require money) to help them to get out of a bad situation. You take people who already are at high risk of living in poverty, some of whom have never had a job, some who are desperate to be employed in a society where they can't find work (or both), and you exploit economic need and the desperation for employment by paying them slave wages - and then have the nerve to twist it into, "But look how much good we do for them, and how committed we are to them."

Some will stay because they don't feel that they have a choice, even though they feel trapped and unhappy. But others will stay because they simply don't realize what's being done to them - that for (not enough, but many) people, having a job means that they get paid enough of a wage to meet their basic needs as well as having work to do that they like each day. They've never had a job that was like that.

That's not making the community a better place. That's being a huge part of the problem.
And until you start to become part of the solution, Goodwill will not get my support again.

Goodwill is a tax-exempt, non-profit business that brings in over five billion dollars a year AND that gets hundreds of million dollars a year in American government funding. They're supposed to be helping communities. Use your power as a consumer and make them accountable for the promises that they make, starting with how they treat the most socially vulnerable of their employees.

More about the Brian Williams video:

Jim Gibbons has responded to critics of Goodwill's employment practices here:

Goodwill's full statement:

Monday, 1 July 2013

My Brain AVM: Proud to Be Canadian, 2013

Happy Canada Day!

I think that enough readers have joined us since last year that I'm not going to feel badly about this annual reblog of the first post that I wrote for a Canada Day, about my brain AVM and Canada's health care system. I'm proud of our universal health care system, despite its imperfections, and I don't mind repeating that.

I feel very badly feel American friends who haven't been able to afford care that they've needed, or whose insurance limited how much physio they could receive after a stroke like mine. I know that many people really struggle.

I know that people in Canada are struggling as well to get what they need in their health care system, even though they shouldn't have to. Elizabeth McClung opened my eyes to that. I miss you, Beth.

In a perfect world, every patient would get the care that I did. Thanks to dedicated staff in Canada's health care system, I am both a brain AVM *and* a stroke survivor. I'm a very lucky person, to be where I am right now.


My Brain AVM Story

I sometimes feel like I spend a lot of time defending Canada’s health care system. I know that it’s not perfect. I can tell some stories of some real atrocities that have happened to people I love, in fact.

But it was there for my mother, right from the time that she was diagnosed with cancer to her death. She was treated, as far as we as we could tell, to the best of the doctors' ability, with respect and dignity. We were treated with respect by hospital staff as well.

The medical system has always been there for me as well, in spades. Like I said, I've been very fortunate.

I had my first stroke in the middle of a job interview in British Columbia. I was twenty-two at the time. I was rocking that interview. They wanted a coordinator for a symposium on youth violence, and I could tell that they liked me (I ended up getting the job, actually).

But it was not to be, because in the middle of the interview I got an incredible headache that came on like a train – fast and forceful. “So this is a migraine,” I thought, faltering over my words. I had to stop and explain what was happening. Someone on the interviewing panel gave me some Tylenol, and I managed to finish the interview, but at the end of it they wouldn’t let me go until I’d promised to go to straight to the doctor.

I didn’t protest. I could feel my neck getting stiff. “So this is meningitis,” I thought.

I’d only been in British Columbia for a couple of months. I’d just put my application for BC health insurance in the mail that morning. I walked into the town health clinic, put my Ontario health card down in front of a receptionist who didn’t know me from Adam, and said, “I think I have meningitis.”

Five minutes later, I was in a doctor’s office.

Five hours later, after an ambulance ride to the nearest city, I was checked into the nearest hospital. I’d had a CT scan and a lumbar puncture and I was scheduled to be transferred to a larger, more specialized hospital in the morning.

Five days later, I’d had an angiogram and I’d had been diagnosed with a brain arteriovenous malformation, or brain AVM (check the Glossary on the About Me page for definitions of unfamiliar terms). A consult had been set up for me in a brain AVM clinic in a Toronto hospital, and I was cleared to fly home to Ontario.

Five months later, I’d been seen in the brain AVM clinic in Toronto Western Hospital twice.  The doctors had decided on a course of treatment based on another angiogram: embolization to reduce the size of the brain AVM, and then a craniotomy. The surgery hadn’t gone as well as they’d hoped: A small segment of brain AVM could not be treated. Later, I  had a stroke that significantly compromised my left side. My treatment team was arranging in-patient rehabilitation at Penetanguishene General Hospital, a facility closer to home, so that my father wouldn’t have to do so much driving. They were just waiting for seizures to stabilize before they sent me.

The rehabilitation hospital kept me for as long as they could, and then sent me to Ottawa Rehabilitation Centre, which kept me for as long as they could. My in-patient rehab was seven months in total.

When It All Comes Down to Money

There’s a chance that I wouldn’t be here if the medical system hadn’t been here to support me the way it had. My family would not have been able to afford my brain AVM surgeries, let alone my aftercare and rehabilitation, if we’d lived in country without universal health care. As I said, the system isn’t perfect...and I really feel for people that have had a bad outcome because they've been put on a waiting list or because they've had to sit in an ER too long.  That absolutely shouldn't happen.

But I can’t imagine living in a country where people sometimes go without treatments that they need simply because they can't afford it.

It makes me grateful to be Canadian...and proud.

More about the AVM Clinic at Toronto Western Hospital.

Dr. Michael Tymianski did my craniotomy.