Monday, 27 February 2012

Disability and Religion, Pt 2: "Through a Different Lens: Autism andthe Divine"

Autism and God

Following up on yesterday's post, I'd like to write about a recent broadcast of "Tapestry" on CBC Radio. I've long enjoyed enjoyed host Mary Hynes' exploration of all things spiritual, and was delighted to hear her devote an entire program to talking with people with autism and the people who work with them about the autistic experience of God...which appears to be as varied as the experience of God in people without autism. The link to the podcast is here:

It's nearly an hour long, but worth the listen.

For those that haven't got the time to listen to the podcast but would like a summary, read on...

Finding the Spiritual in the Everyday

The first interview is with Temple Grandin, a woman with autism who is known all over the world for the work she has done to develop more humane methods of slaughtering animals such as cows and pigs. She talks about how, in keeping with past descriptions of how she sees the world in pictures, she tends to see God as pictures of galaxies that came back from the Hubbel telescope. She also talks about how her work in slaughter houses has actually been a spiritual experience for her. This sounds strange, until she explains how her work has prompted her to think about mortality and what she believes our priorities should be for life on earth. It prompted thinking about how we should treat both each other and the animals with which we share the earth. She spoke a few times about the importance of doing something in life that makes a difference. I wanted to hear more about how a life of thinking in pictures and presumably having trouble understanding parts of social life got her to a place where it sounded like she could speak from a...logic-based place of empathy about the animals with whom she she works, but a place of empathy all the same, that seemed to form the basis for some of her spiritual beliefs...but it was time for the next interview.

Moving In the Opposite Direction

The next interview is with Anthony Easton. Anthony has his Master's in Theology, is religious but not spiritual. Diagnosed as being on the autism spectrum at age 14, his idea of God is a universe full of patterns that we can't adequately describe with language. He likes theology because it's an attempt to describe the patterns, and it also appeals to what he identifies as the part of his autistic mind that likes the taxonomies and ordering rules that he uses to make sense of the world. "There are no more an autistic document than the Creeds," he says, referring to the Nicene and Apostles Creed, which state what Anglicans believe. For Easton, theology gives him the order that he needs to find his way to God. I think that this is a fascinating idea. Many of us reject theology and dogma as too confining, favouring a more free-flow approach to spirituality in which it's easier to feel "connected". Easton needs the patterns to feel the connection, to the point where he becomes upset if the service liturgy isn't performed properly.

What Would He Choose?

Reverend John Gillibrand is also an Anglican minister. His son Adam is 18, and has a form of autism that makes him very low-functioning. Gillibrand feels the same stresses that all parents of children with severely disabilities do, but wants very much for Adam to be accepted in church and community life as he is. He speaks about questions about how to integrate people with disabilities into settings where their behaviours may be disruptive, and about how he determined what sort of decisions Adam wanted to make about his religious life. I like how he says that Adam "constantly lives at the boundaries of his own understanding" in his life and how, rather than try to squash that sense of exploration and learning, he tries to learn from his son by adopting it in his own spiritual's just a different way of looking at things...

"I Just Work Differently"

Finally, Jennifer Pittaway does a piece on a group for young men with autism who are approaching the age of bar mitzvah at Toronto's Beth Tzedec Synagogue. The boys have done a lot of thinking about what bar mitzvah means for them as young men with autism, and the synagogue is obviously working closely with both the boys and their families to make the event as meaningful as possible - even if it means making some small changes to the event. I'm particularly struck with how much thought Eli has put into what the bar mitzvah means for him as a Jew - and how much he dislikes the "autism" label. He says, "I just work differently," which is exactly how I explained my physical disability to the teens with whom I used to work as I tried to to assist them to understand their own disabilities.

Writing this post, I'm reminded of how diverse we are. I know that it's difficult for social institutions to welcome diverse views of the thing around which they're centred...but wouldn't it be wonderful if we could, as a group, just accept that everyone has a different conception of God? Then we wouldn't have to say, "As someone with autism/Down's Syndrome/name a developmental disorder, what's your experience of God?"...we could just say, "As a person from whom I'd like to hear the answer...what's your experience of God?"

Is there anything really stopping us from doing that already?

Sermon over. Amen. :)

Sunday, 26 February 2012

Disability and Religion, Part One

Celebrating Disability and Religion

When I was in high school, and a devout Christian, I was a counselor at a Christian camp one summer. One night, after evening prayers with the campers in their cabins, one of the other counselors came to staff area, terrible excited: a little boy with Down's Syndrome in his cabin had prayed the Salvation Prayer and invited Jesus into his heart. It wasn't my first experience with disability and religion. A couple of adults with intellectual disabilities went to my church. But it was the first time in my evangelical Christian life that I'd ever really thought about people with intellectual disabilities consciously deciding to become Christians.

We all thought that this boy praying the Salvation Prayer was miraculous. Somehow the message we'd been trying to get across all week through daily worship services and in-cabin devotions had reached this boy with a disability and now he was definitely going to go to Heaven. It was something to celebrate!

I got a little more cynical about the experience as I grew up. Like many things about Christianity, I wasn't sure what to think about disability and religion, and especially about that experience at camp.

Becoming Cynical About Disability and Religion

It had been quite late in the camp session when that boy prayed the Salvation Prayer. Many kids around him had done so during the session and gotten a lot of positive attention attention for it. It was very easy to tell that it was an easy way to please the counselors and staff. And, because of his disability, the young boy got even more positive attention from everybody than the other kids did. I wondered, in the cynicism and anger that threatened to overwhelm me when I first left Christianity, if we'd asked him to do it again that session, how easy it would have been to get him to do it again.

And I was angry. I felt like we'd taken advantage of a kid who hadn't fully understood what kind of commitment he was making. If that was the standard relationship between disability and religion, I wanted nothing to do with it.

I'm a lot more mellow now about disability and religion. I ask questions that, because of where I was, I don't think I could have asked. Now I not only can ask them, but I want to. And now I ask myself about that summer experience: Could that boy have understood enough to make what we'd consider an informed decision about becoming saved?

Or, more importantly: Did he understand at least as well as the other kids?

I think he was eight. That age sticks in my mind, at least. I was seven when I first prayed the Salvation Prayer. I only did it because my friend in Sunday School was doing it, and I was totally confused when it was over. I asked the Sunday School teacher, "Will Jesus be in my heart by bedtime?"

She laughed and said, "He's in there already, dear!"

"Oh," I said. I remember being totally unsure as to whether I should be excited or not. I really didn't understand what I'd just agreed to.

Maybe none of the kids who prayed the Salvation Prayer understood that summer. Maybe they did - maybe, at age seven, I was the odd man out because I didn't get it.

I just assumed that the kid with Down's Syndrome didn't get it. I let that become part of some major bitterness toward Christianity that stayed with me a long time. Even if he didn't get it, I've definitely seen evidence that kids with intellectual disabilities, just like the rest of us, have a sense of God that evolves with age.

Talking About Disability and Religion

A few teenagers with intellectual disabilities that I worked with really surprised me with how much they'd thought about religion and spirituality. One of them wanted to talk about the DaVinci Code movie with me, and about how he thought that his parents didn't want him to watch it because they were scared that he wouldn't want to be a Christian anymore.

"Are *you* scared that's going to happen?" I asked him.

He wasn't. But he wanted to know more about different religions. He was curious about them.

Another young woman wasn't sure that she wanted to go to the church her parents went to when she moved away from home, and wasn't sure how to talk to her parents about it. We talked about some things some ways that she could have that conversation with her parents, and how she could explore other churches if she wanted to. I was surprised by the amount of thought that she'd obviously put into why she wanted to take these steps in her life and how important it was to her, spiritually, that she make her parents understand why she was feeling this way.

And I've always known some adults with intellectual disabilities for whom participation in a church and church life is very important - and others for whom it just isn't. Just like people without disabilities. As someone who is still very fascinated with why religion and/or spirituality comes to play the role it does in peoples' lives...I just think it's interesting.

When these conversations come up, it's like a smack in the head: Don't make assumptions, particularly about disability and religion. Figuring out what I believed and why took me about six years after I graduated from high school, and nearly knocked me off the rails a couple of times. It was an integral part of my struggle to figure out who I am. Why wouldn't there be people with intellectual disabilities that go through the same thing?

More About Disability and Religion...

I've never talked with anyone with autism about God and disability and religion but I recently heard a radio program called "Tapestry" about how some people with autism view God that was really fascinating. It was what got me thinking about all of this. I'll talk about it more tomorrow.

Wednesday, 22 February 2012

My AVM Story: Walking Toward Light

On Tuesday night, my friend Harry's wife, Heather, died very suddenly. All of us who knew her and Harry were shocked by her death.

I haven't seen Harry for quite some time, and I didn't know Heather that well. I mainly kept in touch with them through Facebook. I heard reports from mutual friends that saw them over the last couple of years that they were very, very much in love. They got married in July 2011, and both sounded very happy with married life.

It's difficult to write about their relationship in the past tense.

The final ruling on why Heather died isn't in yet, but her doctors believe it's because a blood clot formed when she broke her foot several weeks ago, and traveled to her lungs.

It's so difficult to wrap my head around the fact that Harry and Heather got up on Tuesday, went to their teaching jobs, came home to dinner together, and got ready to go to school the next day, never suspecting that they were doing those things together for the last time. And yet, when I had my first stroke, I wondered myself if I had gone through my day for the "last time" myself.

A lot of us that know Harry and that knew Heather talked online on Wednesday, and there were a lot of "I love yous" going around. It's amazing how much something like this reminds you that life can change in an instant, and that you should never pass up a chance to let people know that you care about them.

The Worst Headache of My Life

When my first stroke came on, I thought I had meningitis. My head felt like it was going to burst open. My neck and shoulders quickly become stiff and painful. I got through the job interview I was in at the time, and I got myself to the doctor - but I didn't trust him when he said that this was likely just a flu. It didn't feel like any flu that I'd ever had, and I'd been around my friends' small children that week. I needed to know if it was meningitis. So I called an ambulance.

I was a little panicked. I knew that people died from meningitis. The ambulance driver calmed me down enough to get me through the ride to the hospital, intake procedures, and the lumbar puncture. By that time my landlady had showed up to sit with me for a while. But she was gone when they came back and said that there was blood in my spinal fluid and that I needed a CT scan.

I knew that blood in one's spinal fluid wasn't good. It started to occur to me while I was waiting for results from the CT scan that I really did have a chance of dying in that hospital in British Columbia, when my family was half a continent away in Ontario. My best friend in the area was back in Ontario visiting family. My landlady had called my other close friend in the area, and she was in labour.

"Where's your family?" the doctor asked.

"In Ontario," I said. "Should someone fly out?"

He paused a moment. "If they can manage it...they probably should," he said.

Oh wow, it's that bad, I thought.

It was. I was bleeding into my head. It was all beginning. It was a while before I was really, truly sure that I wasn't going to die.

"Hi, Dad? I'm having a stroke..."

I'm kidding. I don't remember what I said to my father when the doctor handed the phone to me. I think I tried to reassure him that, except for a terrible headache, I was doing okay, because he was pretty upset...I'm not sure what the doctor told him.

And I didn't learn anything more that night except that I was going to another hospital the next day, where they'd be able to run more tests and get a clearer picture of what was going on.

Walking Steadily Toward Light

I was light-years away from where I thought I'd be when I'd gotten up that morning to go to my part-time job at the Parksville Pharmasave. It was the beginning of a journey that took me...light-years from where I'd be in my life right now.

Just because my life turned out differently than I thought it would doesn't necessarily mean that it turned out worse than I thought it would.  There's light along this road, and light at the end of it. But it also doesn't mean that there haven't been some dark times in the last twelve years.

For Harry...and For Heather

Harry, I know it looks dark now. I wish with all my might that you didn't have to go through this. But the quickest way through the dark - is to just walk right through it. You've got lots of people who care and who want to help.

Rest in peace, Heather.

Tuesday, 21 February 2012

The Trick of One-Handed Living

I've mentioned previously that I have very little function in my left hand.  I also live alone. When you live alone, and you have to live one-handed, you have to get creative. If you're curious, try doing your morning routine one-handed:

  • Shower, teeth-brushing, styling your hair (I don't shave my face, of course, so the guys will have to tell me how that goes.)

  • Dressing (including putting on your bra, ladies.).

  • Making breakfast. Try something simple, but throw in a little trick like cutting up a banana for your cereal or spreading some peanut butter on your toast.

  • Putting on shoes with laces. Try this even if you don't intend to wear them.

Every Problem Has a Solution...Even One-Handed Living Problems

I don't suggest that you do any of this as a "See how hard Sarah has it" exercise. I don't have it that hard. The thing is, I've found ways to get around most of these challenges, to the point where I manage my life one-handed without even really thinking about it anymore. I have an adapted cutting board and a special knife to help with cutting up food. My sneakers have stretchy shoelaces in them that don't require tying.  I figured out a way fairly early in physical rehabilitation to put my bra on one-handed so that I wouldn't have to wear a sports bras all the time (email me if you want to know, ladies).

And for the stuff for which there isn't a tool or an established trick - I figured something out. Because when you live alone, if you don't find a way to do something, and you're as stubborn about asking for help as I am, it doesn't get done.  I'm not always successful on the first try, it's not always graceful or pretty (I'm sure that getting the cat into the carrier last week to get her to the vet painful-looking as it actually was). Yes, there are some things that I simply can't manage one-handed- but you'd be surprised at what I've found ways to do.

I'm not special. You'd do the same thing.

Hope for My Hair

One thing that's been very difficult for me to manage one-handed from the moment I had the stroke is my hair. I had long hair when I went into the hospital for surgery. I came out with shorter hair. It's been very short sometimes, but I always end up missing my long hair too much, so I grow it out again - so it can sit limp on my shoulders, because you really need two hands to do just about anything with long hair. I've figured out how to put it up in a clip when it's long enough, but I miss being able to put it in even a simple ponytail.

Which is why I was thrilled to find this video yesterday:

Talk about creativity and problem-solving! I might have just enough function in my left hand to manage it...looks like I may be practicing putting my hair in a ponytail in my spare time.

Sunday, 19 February 2012

Amelia Rivera Update

Children's Hospital of Philadelphia has apologized to Amelia Rivera's family for how discussions about a potential kidney transplant for the 3-year-old were conducted.

Children's Hospital of Philadelphia Denies that Amelia Rivera Was Declared Ineligible for Transplant Based on Her Intellectual Disability

Amelia has Wolf-Hirschhorn Syndrome, a rare genetic disorder characterized by severe physical health issues and intellectual disability.  At a meeting with a surgeon and a social worker at the Children's Hospital of Philadelphia, parents Chrissy and Joe Rivera were told that Amelia would not be eligible for a life-prolonging kidney transplant because she is "mentally retarded".

Chrissy blogged about the incident in a Wolf-Hirchhorn Syndrome internet support community, attracting media attention and sparking the creation of an online petition to get Children's Hospital of Philadelphia to reconsider its position.

The hospital has agreed to reevaluate its decision regarding Amelia's eligibility for transplant, and continues to deny that it discriminates on the basis of intellectual disability.

For the full story and commentary on the Rivera case, please read:

Thursday, 16 February 2012

What Now, Rosie O'Donnell?

So, I've been keeping an eye on reaction to Rosie O'Donnell's interview with Chelsea Handler over the last couple of days.

Disappointing, to Say the Least. Rosie O'Donnell's Taken a Beating Over This.

People have been saying some very nasty things about Rosie O'Donnell (and to her, if her Twitter feed is anything to go by). I was shocked by the venom of some of the comments that I heard had appeared on Matt Roloff's (of The Learning Channel's "Little People, Big World") Facebook page, but when I investigated tonight it looked as if those comments had been removed. The remaining ones, calling Rosie O'Donnell things like "loudmouth" and "ignorant" and accusing her of planning the whole piece as a way to get the Roloffs on her show (in response to call from Matt Roloff for compassionately helping Rosie O'Donnell to move past her anxieties about little people) were difficult enough to read.

I don't think that Rosie O'Donnell is blameless here. I think that she didn't choose the most sensitive way to express what she was trying to say, and I understand why people are angry. But, as a person who is "different", I have always said that I'd rather that people express the ways in which my disabilities make them anxious, if this is an issue, and ask me whatever questions that they need to in order to alleviate their anxiety. I'm not going to fault her for doing that, especially when it obviously does make her feel ashamed that she feels that way.

Rosie O'Donnell...Meet Me at Camera Three

I've been reading your Twitter feed and see how frustrated you're getting at apologizing over and over and not being sure what else you can do. I think, if I was a little person, what I'd want to hear now is what you plan to do now that you've admitted to the world that you suffer from this anxiety.

I think that you can understand this. You only have to imagine a conversation between two people where one described how she'd grown up in a house where she was taught that same-sex attraction was something to be fears and that was lesbians made her anxious, even though it made her ashamed to feel that way; how she couldn't understand how lesbians had sex; how she couldn't wrap her mind around the idea of two women being attracted to each other, couldn't reconcile that with her conceptions of healthy relationships...and I'm sure you'd not only wholeheartedly suggest that if he or she really want to get over this anxiety, there are resources that he or she can access to have questions answered, and that she should try to find some lesbians in loving relationships with whom she can spend some time and get to know, so that she can see that they're not that much different than everyone else: people with jobs and children and good times and bad times that contribute to their communities and live in loving relationships...just with other women.

And I'm sure that you'd know to suggest that if the anxiety has reached the stage where it's very disruptive to her life, maybe professional help is warranted. Phobia treatments are very effective and actually work quite quickly when the individual is really committed to them.

Of course, you don't owe anyone details about what you plan to do now, if anything. But you keep asking on your Twitter feed, "I've apologized...what more can I do?" Maybe sharing that you plan to do something will heal some wounds.

For the Rest of Us

Enough of the attacking rhetoric and the name-calling. You don't create a more inclusive world by calling *anyone* names, no matter how intolerant you think they're being. It really just brings you down to the level at which that you believe they are.

Don't make me say it again.

Matt Roloff's Facebook Page:

Wednesday, 15 February 2012

Supreme Court Ruling on Testimony from People with IntellectualDisabilities...It's About Time!

A Supreme Court ruling in Canada is going to change the experience of people with intellectual disabilities in Canadian courts.

The ruling was made as the Supreme Court gave a woman with an intellectual disability a new trial after her testimony about an alleged sexual assault was dismissed.

Supreme Court Ruling Offers More Protection to People with Intellectual Disabilities

The Supreme Court ruling is extremely important.  Up until now, the Canada Evidence Act has put restrictions on how the testimony of people with intellectual disabilities can be used in court. Judges had the right to assess competence of a person with an intellectual disability and rule whether or not his or her testimony was admissible. This goes beyond the standard required for anyone else to testify: that they be able to communicate their story clearly, and that they promise to tell the truth.

I have never supported an individual to testify in court before, but I have supported individuals to make reports to the police. We talked beforehand about how it was important to be very honest, to tell the story exactly how they remembered it happening, and to answer the officer's questions as best they could. I can tell you from working with many, many people with intellectual disabilities that they know the difference between "telling the truth" and "telling a lie", and that, like most of us, most of them feel quite strongly that telling a lie is wrong.

So I found myself nodding when I read Chief Justice Beverly McLachlin explain that when an individual with an intellectual disability testifies, the promise to tell the truth should be enough. They should not have to demonstrate understanding of the moral obligation that the promise confers upon them (i.e., explain in concrete terms what taking an oath morally obligates them to do) - they just have to take the oath and be able to tell their story.

Of course, not all people with intellectual disabilities will be able to testify. Some will not understand that they have to tell the truth. Some may have a mental condition as well as an intellectual disability that doesn't allow them to distinguish fantasy from reality. But the stereotype that all people with intellectual disabilities cannot understand the difference between a truth and a lie and therefore shouldn't testify is no longer an issue. Now an individual is *competent* to testify under the law until proven otherwise, instead of *incompetent* until proven otherwise.

This makes all the difference in the world. It gives people like the woman  who got a new trial, who was trying to take her sexual abuser to court, a lot more protection under the law.

Legitimate Concerns About the Supreme Court Ruling?

Too much, the dissenting Justices said of the Supreme Court ruling, holding fast to the idea that if you can't explain why it's important to keep a promise to tell the truth, the power of that promise becomes so diluted that it really offers the accused no protection at all.

There were three dissenting judges out of the nine who voted. They were also concerned, according to one article that I read, that when asked questions about her daily life and routine, the woman who got a new trial answered "I don't know."

I don't think that this is necessarily a sign that she's not fit to testify, or doesn't understand the gravity of testifying in court. That could be simple nerves, and it would have been unfortunate to have voted down this Supreme Court ruling because the person had nerves.

Support Measures for the Supreme Court Ruling

Now that the ruling has passed, provincial governments may want to consider some sort of support process in place somewhere in their social services infrastructure to assist people with disabilities who do have to testify to become more comfortable with the courtroom and its processes before the actual day:

  • Provide someone to be a sort of case-manager, to assist the person's lawyer to get them prepared for court and to be a person to whom the person can have easy access in times of anxiety about testifying. This person could help with the points below.

  • Go with the person on a visit to the courtroom to view a portion of a trial. Familiarize the person with courtroom procedures. Watch a person testify.

  • Arrange to have the person talk to a person who has testified in court, to answer their questions.

It's important that the legal and judicial system take all possible steps to successfully implement this new Supreme Court ruling. As Carol Goar said in her "Toronto Star" column, this sort of ruling should have come into place twenty years ago when the Charter of Rights and Freedoms was enacted. We owe it to the people with intellectual disabilities who weren't protected before the Supreme Court ruling for all that time to make sure that people with intellectual disabilities are protected now.

For more on this story:

Sunday, 12 February 2012

Rosie O'Donnell Speaks Out on Little People

Well, readers, what do we think of this bit of sharing from famous people about their feelings about little people?

I think that most people are familiar with Rosie O'Donnell. Chelsea Handler is a late-night talk show host.

Deep Sigh...Sometimes People Just Shouldn't Even *Start* Talking

I understand that, like Rosie, people are sometimes uncomfortable around people who look "different", for whatever reason, and they can't really explain why. I think it takes a lot of guts to own up to it, and to talk about it, especially when you're as public a figure as she is. However.

I expect her, as someone who's interviewed as many people as she has and who has lived with a lot of social stigma herself for being "different" in the American Hollywood scene (overweight, and a lesbian who has had adopted children) to approach a discussion about why she has conflicting feelings about little people with more sensitivity and less of the "they're freaky and I don't understand them!" vibe that pervaded the interview, especially toward the end. Her attitudes seem more based on ignorance of little people and their physiology than the initial gut emotional reaction that she identifies. And that's simply not acceptable from a woman who made it her life to get to know people and their stories for so long.

Someone Please Keep Chelsea Handler Away From Little People

And Chelsea Handler is just downright ignorant. Sentences like "It's like having a kid" and "There's not a lot of job opportunities for these kinds of people...they need help." about her co-host (a little person), and calling another little person in her office a "little nugget" tells me everything that I need to know about her.

A fitting end to a weekend where it wasn't even worth it to get out of bed.

Thank you to Sandra Rhodda at @accesstourismnz for making me aware of this.


And thank you to Chris Errera, for this (much more diplomatic than mine) response that I found when I went to looking for a link to Rosie's video.  Must-watch.  He gets it, and puts my cynicism to shame.

Wednesday, 8 February 2012

Me and My Cane

I Love My Cane

We are an excellent team. I've never seen footage of myself walking with my cane, but I feel like I move smoothly and freely. I don't even notice my cane anymore as I walk. It just feels like an extension of my arm, helping to make walking a bit easier for me. It feels to me like a beautiful friendship.

If my cane were a person, however, you could make an argument that I'm not much of a friend.

Outdoors Friends

When I was in outpatient rehabilitation from my stroke and getting mobile enough to spend more of my time out of my wheelchair, I used my cane all the time, inside and outside. Now I don't use a wheelchair at all and I only use my cane when I'm outside, for added speed and balance. If I'm going to be in a building for any length of time, I hook it over a chair or set it against something, and don't think it about it until I'm ready to go outside again.

Friends don't just associate with friends when they need them for something and then set them aside until the next they need something. My poor cane. Despite the fact that it gets me where I'm going so much more easily when I'm outside, that it does increase my balance and speed, and that it's stopped me from falling more than a few times, it basically gets ignored when I'm indoors (except when my father plays with it, which just annoys me). In my last job, one of the individuals that I supported always took note of where I put it down when I came into the office, because he knew that I'd forget where I put it when I went to leave. As I left, he'd bring it to me and I'd thank him, embarrassed. I've left my cane hooked on grocery carts, on chairs in food courts,  on clothing racks in stores, and on windowsills, ledges, counters or tables in just about any other building that you can imagine. All with no apology.

If my cane were a person, maybe someone would say to it, "It doesn't sound like Sarah is much of a friend. Maybe you should just cut her loose."

Growing Apart?

But if my cane was a person, I think that it would understand that me forgetting it is really a good thing. If I can walk away from it more and more easily, that means that I'm needing less and less. That means that after over a decade of being a stroke survivor, I'm still getting better.  And a friend would celebrate that for me, plus look forward to the prospect of eventually totally retiring.

It's not like I'll ever forget how fortunate I am to live in a country where my mobility aid was affordable and easy to get. It's not like I'll ever forget a dozen years of walking with the extension of my arm.

My friend has offered to dress up my cane a bit - put some colour over that generic grey and silver that I've left untouched for so long. Perhaps it's something to consider. Something nice to do for my friend.

Tuesday, 7 February 2012

Physical Accessibility: Please, No Half-Assed Efforts

This particular rant is about physical accessibility, and inspired by a business building with which I have contact on a regular basis. It has a wheelchair ramp in addition to stairs leading up to its entrance. The problem is that in the winter, the wheelchair ramp is regularly covered with ice and snow. Anyone who's tried to wheel themselves up a snow- or ice-covered ramp in a manual chair, or who has tried to push someone up a snow- or ice-covered ramp in a manual chair knows that it's unsafe at best and impossible and worst.

Major Physical Accessibility Problem

This is a long-standing problem. I've complained to staff at the business twice this winter. My family has complained in past winters. It's not just a safety problem for people using wheelchairs, but for anyone else that might use that ramp out of necessity or convenience: parents pushing a stroller, people using walkers, canes, or crutches, and people who just feel a little unsteady on their feet and would like to avoid stairs.

My question is: If a business doesn't have the resources or the inclination to keep a wheelchair ramp usable for the public, why put it there in the first place?  If the business in question was really serious about easy physical accessibility, and not making customers go through a busy parking lot that's often as icy as the ramp to get to the back entrance to the building, the ramp would be cleared off. Obviously increasing physical accessibility is not the reason the ramp is there.

I realize that people don't think about matters of physical accessibility until they really need to. I certainly didn't. Here's a hint to those who haven't thought about them: You can't half-ass these things. It's not a good use of the time and money it takes to increase physical accessibility in a  building, and it simply doesn't send a good message to the rest of the community. It says that you don't care whether or not people with disabilities or other people that benefit from universal design can access your place of business. It says that you don't really care whether that group spends any money in your store. As a person with disabilities, when I've not been able to get into a business because of my disabilities, I've said to myself (and to others), "They obviously don't want my money...I'll go to the businesses that do."

I don't feel that this is an over-reaction. When it comes to making communities places in which people with disabilities can have full access, they deserve more than half-assed efforts.

Monday, 6 February 2012

"Inside His Mind" - A Must-Read about Dual Diagnosis

I came across an incredible blog post over the weekend about a young man with a dual diagnosis.

I've never read this blog before, but the post in question is a mother's interview with her teenage son   (I'm assuming that 'he's a teenager; his age is never given, but one of the tags is "teenager" and the Twitter tweet that led me to the article said he's a teenager) who has Asperger's syndrome, bi-polar disorder and obsessive-compulsive disorder. This is called a dual diagnosis - developmental disability and mental health diagnosis. It's a fascinating read, and a couple of things about it really struck me.

1) R's Level of Insight into His Dual Diagnosis and His Disabilities

When I worked with teens with intellectual disabilities who could understand that they had a disability, we had a lot of conversations about what "disability" was. Some of them didn't realize that they had one. Some knew that they had one, but simply didn't consider themselves people with a disability. Some didn't want to be considered one of "those people" out of fear of being teased, or of being associated with groups of people with whom they felt they had nothing in common.

I tried to get the message across that if you understand what your disability is and how it affects you, you know how to ask for what you need - from doctors, from formal supports, from informal supports, even from potential employers. I struggled with depression and obsessive compulsive disorder in high school and through my twenties, and I know that I could not have explained nearly as clearly as R how these things affected me.

R's family needs to look at this ability to reflect on his dual diagnosis and to explain what it's like to be "in his mind" as a strength that he can utilize.

2) Which Disability R Perceives As Giving Him The Most Difficulty

Some of the difficulties that R experiences likely come from his Asperger's diagnosis. The trouble picking up on social cues and the social awkwardness are symptoms of Asperger's (they can be symptoms of other things, too, but if he's been diagnosed with Asperger's, those things likely are likely part of that disorder for him.) The fixation on video games and technology may also be a part of his Asperger's, even though he seems to identify it as something separate.

Based on this interview, it seems to be the bipolar part of R's dual diagnosis that causes him the most distress. It makes me think about the controversy over the proposed changes to the diagnostic criteria for autism for the DSM-V, and wonder:

  • How many of the R's medications are treating Asperger's-realated issues?

  • Are the new psychiatrist and psychologist he'll be seeing supporting him for the bipolar? The Asperger's? Both?

  •  What are his doctors' take on the video games as an addiction (as opposed to another manifestation of Asperger's)?

3) A Downside to Canadian Medicare

I've never said that there weren't any.

In emergency situations, Canadian Medicare has always served me well, as I've blogged on before. But when I read that R will be seeing a psychiatrist...I thought, "Wow, just like that?"

In Ontario, it's very difficult to see a psychiatrist or a psychologist anymore if it's not an emergency situation.  It wasn't always like that. But it is now. It's very frustrating when you're supporting individuals who need a psychiatrist and it's so difficult to get them access to one.

I realize that for people without insurance in the United States, this sort of treatment is very expensive. But with non-emergency psychiatric care so hard to come by in does make me wish sometimes that it was as easy as being able to find a psychiatrist and pay for services, just like that.

I guess there are no easy answers when it comes to health care.

Thank You, Ashtyn Evans and R

Ashtyn printed all of R's responses about his dual diagnosis unedited in her blog post, and plans to blog about her feelings later.

I'm looking forward to reading her thoughts about R's dual diagnosis.

Thursday, 2 February 2012

Why I Write About Welfare Benefit Reform in Britain

Welfare Benefit Reform: Tuesday

Well, it seems clear that Britain's movement to fight welfare benefit reform and deep cuts to disability income supports suffered a major blow on Tuesday.

I don't know all the particulars. I still don't totally understand it all. I know that some legislation (which already went though at one level of government) to mitigate effects of the cuts on the children with disabilities was struck down at another.  Classy. I've been reading on Twitter about some awful language from the Conservative Members of Parliament about people with disabilities: "the great unwashed", "retards", people that think disability is a "lifestyle choice" and so forth.

Stay Strong, Britain...

I still don't understand all  of what's gone on here and what continues to go on. What's struck me the most about the whole thing, and its plainly visible in the post of Sue Marsh's to which I've posted (and the comments on it), is the desperation. Sue put together the Spartacus Report to try and show the British government the impact of the proposed welfare benefit reform, and has put countless hours into coordinating people and efforts even while hospitalized. I've read a lot of her stuff lately, and I don't doubt her when she says that she's not going to give up - but I've also never heard her sound so desperate.

Read this too from the woman who has been working with Sue. Desperate.

Why British Welfare Benefit Reform?

I've been asked why I've been writing on the welfare benefit reform situation in Britain. A lot of my Twitter followers (and the people I follow) are involved with the disability community in  Britain, so I see a lot about it. There seems to be a perception that people using Britain's income supports are all "scroungers", and the government seems determined to deal with the inevitable few who abuse the system by punishing everybody who uses it.

And you don't have to understand all of it to appreciate that people are very, very frightened of losing support that allows them to live and being told to go out and find jobs when they legitimately can't work.  As Sue says in her post, "Yes, even Blair backed down from sending cancer patients to the jobcentre."  Apparently this government isn't prepared to.

I write about what's happening in Britain, to the best extent that I can, because I hear the "they're all scroungers" attitude from politicians in Canada and the United States, too. It has reached a fever pitch recently, particularly in the United States with the election approaching.   I've heard Republicans talk about cutting food stamp programs, refer to people on social support programs as "raccoons" who will  just keep coming back as long as you feed them, and suggest that people with disabilities could have their needs met through the generosity of churches and community groups instead of  having them rely on income assistance.

In Ontario, monthly ODSP support still keeps individuals below the poverty line. And yet the focus on the very small amount of people who manage to abuse the system to get as much money out of it as they can, rather than the vast majority who can barely afford to both pay rent and eat each month.  I also remember, several years back now, when Ontario Premier Mike Harris declared that people make a choice to be homeless, which always leaps to mind for me when I read stuff like, "Disability is a lifestyle choice".

What's happening in Britain could easily happen in Canada or the United States, too. And yet I've not heard or seen one news story about it here.

I write about what's happening in Britain with welfare benefit reform because it's a current event that potentially affects us all. Disability news needs makes to make the world news too - let's do what we can to make sure it does!