Saturday, 29 December 2012

On the Stairs at Massey Hall

Is everyone enjoying their holiday season? :)

It's been a busy time around here. I celebrated Christmas with my family at my sister's house, as always, she and her husband blew my mind with how gracious they were as hosts, despite the fact that they were dealing with a toddler and a sick dog. I also went with my father and my uncle to a "Messiah Sing-A-Long" in Toronto's Massey Hall on December 23.

My "Singing Debut" at Massey Hall

The Sing-A-Long is an opportunity for people who love Handel's classical work "Messiah", generally sung at Christmas, to get together and sing it in a professional venue (sitting in the audience) along with with a professional choir and orchestra (on the stage). If you don't think you've ever heard anything from "Messiah", I can practically guarantee that you've heard the Hallelujah Chorus, which I heard on a commercial about an hour ago.

Anyway, I sang in a choir that did "Messiah" (longer ago than I care to think about and at a local church, not Massey Hall) and I love the music, so I went with Dad and my uncle to the Massey Hall Sing-a-Long. I did not sing. It's been so long since I sang that there's no way I could hit the notes that the sopranos need to. Next year I'll work myself up to it. Not the point of my story anyway.

Getting to the Balcony at Massey Hall

The point is that Massey Hall, which is over 100 years old, doesn't have an elevator up to the balcony where our seats were. This meant going up several full flights of stairs. Not normally a big deal. I am a bit slower on stairs, and my uncle did feel compelled to stand beside me as I was going upstairs to keep the crowd going past me too quickly (the seats were general admission and people were really rushing at that point), but I could see once we sat down that there were people who'd likely had a far harder time than I did getting up the stairs to the Massey Hall balcony

However, going down the stairs at the end of the performance, we got separated, and I was going downstairs by myself for a short time. Going downstairs I'm even more careful. If I go down stairs like a "normal" person,  I have to "prompt" my weak leg on when to bend and when to stop bending.  I've really just started to work on this. Up until now I've going down steps the way I learned in rehab: I put my strong foot down on the step, then my weak foot  beside it. I don't know whether it was just this process that made the gentleman fall in a couple of steps below me, or whether it was my cane, or whether he could see me wincing slightly because I'd been wearing my brace for over eight hours and my foot was sore. But he quickly let me know that he was walking in front of me in case I lost my balance.

I've heard so many stories from disabled people about how rudely they're treated in public. I've been been fortunate enough to have encountered it so infrequently that I really can't think of the last time it happened. People have always been very gracious about offering me a seat on a crowded a bus, or an arm when it looks slippery (which can be up to half the year where I live). I've had a couple of seizures on public where I've woken up in the hospital with no idea how I got there, and been told that strangers on the scene called an ambulance and made sure that I got into it okay. It may seem strange to be impressed by that, but there is a psychological phenomenon called bystander effect that predicts that the larger the crowd around a person a crisis, the less likely any one person is to do something about it.

So I've been very lucky. The odd time that I've been treated in a way that's made me annoyed when I've been out in public, it's been because someone's been *too* anxious to help and:

  • Has touched me without my permission

  • Is hurting me without realizing it

  • Has, in the insistence on helping, inadvertently put himself or herself in danger

The third thing happened that day in Massey Hall. As nice as this gentleman was to stand in front me, his offer made me nervous because I weigh more than I look like I do. I was concerned that if I had fallen on him from a few stairs up, I could have knocked him down and hurt him as well. I told him that I really didn't want to fall on him if I lost my footing, but he said, "That's okay, we're done for that day."

What else can I do?

It's not that I don't appreciate the sentiment or concern, when you make gestures like this, folks, but it really does put me in an awkward position.  I wasn't particularly annoyed that day, as it was so close to Christmas and I was in a good mood. But it sure would have put a damper on the holiday spirit for some people if I'd fallen and needlessly injured a well-meaning individual on the stairs at Massey Hall.

The best way to find out whether a disabled person needs help, and the best way to find out how you can help, is to just ask.

See you in 2013!

By the way, if you're in or near Toronto and looking for a new Christmas tradition, the Messiah Sing-a-Long at Massey Hall will be in its 27th year next December!  Even if you don't sing...hearing 2700 people singing the Hallelujah Chorus is an incredible experience.

The promotional site for this year's Sing-a-Long at Massey Hall (with Handel himself conducting):

The Hallelujah Chorus (abridged) from another Sing-a-Long in the Toronto area last Christmas:

Thursday, 20 December 2012

Communication Barriers

I'd like to go back to something that I was talking about earlier in the month, before the world was rocked by the school shooting in Newton, Connecticut: barriers, which was the the theme of  this year's International Persons with Disabilities day on Dec. 1. Communication barriers, to be exacy.

My niece, Gillian, is now almost a year-and-a-half.  Her vocabulary is becoming quite extensive as her speaking abilities develop, apparently. On the phone with my sister the other day, she said that Gillian is at the stage where she's starting to really starting to repeat what other people say. She was doing a bit of this when I last saw her, but more experimenting with the limited vocabulary that she had at the time: "Mommy" (her name for both her mother and her father), the names of both her pets, the names of the foods that she liked and disliked, one-word identifiers for her favourite books and toys, "up", "down", and (of course) "no".

Over the summer, our cousin, a speech pathologist, visited my sister for a weekend. After listening to Gillian trying to talk, she said, "Gillian knows exactly what she wants to say. She just can't say it in our words yet."

The other way to look at that, of course, is that we just couldn't understand "Gillian-speak".

Everyday Communication and Everyday Communication Barriers

I've worked with some people with some profoundly physically and intellectually disabled people, people who needed assistance with all activities with daily living with whom only only the most basic communication was possible at the time: they smiled and laughed when they were happy, cried when sad or in pain, refused to eat when they no longer wanted food, etc. Major communication barriers. Sometimes context gave clues as to what was making them happy or sad. Other times I have had no idea. I'd wonder, "What would you tell me if there was some sort of language that we both shared right now? I would probably tell the entire world to fuck off."

I can't imagine anything more frustrating than to find myself in a situation where I had to accept total care from people and to not be able to say:

  • "Yes"

  • "No"

  • "I don't like that"

  • "More of that, please"

  • "I'm in pain. Please help me."

  • "I'm not hungry/thirsty"

  • "I'm starving/so thirsty"

  • "I'm so happy/sad/scared/lonely/bored/angry/frustrated."

  • "I'd like to  _____."

  • "Back off before I smack you."

  • "Can I see/call my family?"

Those kind of communication barriers between a perspm and the rest of the world must be hell to live with.

I'm funny when I have to deal with communication barriers. When I encounter them with the people I support, and people that I can see are having a genuinely difficult time communicating (people with a speech impairment, for example), I'm about as patient as it gets.  I'm not so patient when I have it in my head that people can communicate with me effectively and are just refusing to. But I need to stop making assumptions about who can communicate effectively and who can't. Because while there are times when it seems like I'm a very effective communicator, there are others where I can't remember words, where I reverse words, and where I really struggle to organize my speech. I need to remember that It seems to me that this has gotten worse since the stroke, but that doesn't make sense to me, as I believe that all the structures involved with speech are in a different part of my head from where I bled.

It's really gratifying to see technology like the iPad break down communication barriers and open the world of verbal communication particularly to people with autism. And for those that for whom no formal communication systems have been developed because the perception that they're "too disabled", we really do need to assume that there's a person in there and keep trying finding ways to reach them.

When they can't find ways to speak our language, we need to find ways to speak theirs - everyone has a way of communicating. It becomes incumbent on us to remove communication barriers.

How do you remove communication barriers with people in your life?

"60 Minutes" Piece on Autism, Communication, and iPads:

Tuesday, 18 December 2012

My Brain AVM Story: Leaving Ottawa, 2012 Update

I was in Ottawa over the weekend. As always, it brought back a lot of memories. It's almost twelve years ago to the day that I walked out of the Ottawa Rehabilitation Centre after being in hospitals since the end of May. I'd be going home for good, and starting a new chapter of my brain AVM story.

Ottawa, December 21, 2000

My last day at ORC was marked by my infamous tantrum about a day nurse that lied about me at a previous meeting being scheduled to represent Nursing staff at my discharge conference. Administration eventually declined to send someone from Nursing if I refused to have her there. This was fine, as far as I was concerned. My psychologist read Nursing's notes, and the nurse who'd thrown me under the bus (as far as I was concerned) didn't get to speak. It was a win-win for me, really. The whole sordid story behind that is here:

All of us on the unit were leaving that day, because the unit was closed over Christmas. Some people would be returning in the new year for more inpatient therapy, or for outpatient therapy. I wouldn't be, so I said good-bye to all my friends: Nick and Angela, and Helene, and Alison, and Katie. Some of them I'd see again. Angela and I spent a week together at her home in Ottawa in the next year, and I saw Katie a few times when I went to Kingston to visit my sister. The others slipped off my radar. I've tried to find some of them through the Internet, and haven't been able to. Angela kept in touch with some of them, as she went to ORC for outpatient therapy. But some even she lost touch with some of them. Perhaps they wanted to forget that time in their lives.

I said good-bye to all my physiotherapists and occupational therapists, and my social worker and my psychologist, and the doctor that oversaw my team. I was nervous. The hospitals were friendly places for disabled people. The buildings were accessible and people were okay with me moving slowly and I knew that if I had a seizure I was surrounded by people who knew what to do. I knew that the "real world" wasn't always like that.

A Brain AVM Story Milestone: Good-Bye Inpatient Rehabilitation

I started inpatient rehabilitation at Penetanguishene General Hospital in a wheelchair, barely able to do anything for myself. I walked into Ottawa Rehabilitation Centre three months later using a cane. I was shaky and I didn't get very far before I needed to use my wheelchair, but I walked in. I was a lot less shaky when I walked out, but my wheelchair was right behind me. I needed to use it when Dad took me to the mall so that I could do my Christmas shopping before we left town.

Today, nearly twelve years later, I could have walked around Ottawa without the cane if I needed to. We don't need a disabled parking placard for Dad's car anymore because I simply don't qualify for one. I carried a tray in the restaurant at lunch - using one hand, but it's something that I can manage.

It's taken a lot of hard work, and I know that there's still hard work to come. But things are very different than that day that I walked out of Ottawa Rehabilitation Centre, and that really struck me this weekend.

With each year and each December update, there's a little more to celebrate.

I'll always be thankful, as hard as inpatient rehab was, that I was fortunate enough to have access to the professionals that got me here today, and for the friends that I made. I'll never forget any of them.

Friday, 14 December 2012

A Word About Newtown

The news about the school shooting in Newtown, Connecticut has devastated all of us today. I want to tell America that we here in Canada share your shock and sorrow, and are mourning with you over the innocent lives lost.

I also want to urge people, as I did just after the movie theatre shooting in Colorado this summer, not to jump to conclusions about the motivations of the shooters or any diagnoses that he may have had. I've read the rumours that he was autistic and/or intellectually disabled and/or that he may have had some kind of personality disorder. I've not seen anything confirming any of these rumours. Perhaps as you're reading this, things may have changed, and we may have more information.

If it turns out that any of these rumours happen to be true, please be very careful with how you choose to speak about them in connection to this killing. Too often in these cases, the presence of some sort of diagnosis leads to stereotyping of groups that society already looks down on (namely the disabled and those with mental health conditions). It's a very emotional time, and we're all trying to make sense of the ultimate senseless event: the deliberate murder of children. However, when you speak about this event to other people, particularly to children (who are still learning how to categorize information and incorporate it into their worldview), please try to get these messages across should the opportunity arise where they must be discussed:

  • The fact that one person with a particular diagnosis commits an act of terrible violence does not mean that everyone with that diagnosis is capable of committing such an act.

  • People who share the shooter's diagnosis (if he has one) need not automatically be feared.

  • It's important not to talk to people like we know why the shooter did this, until it's been confirmed. Even if we never know, and even if that's very difficult for us to accept.

I'm not trying to defend or protect the shooter. In fact, this is one of those very rare times when I'm finding it difficult to hang on to my belief that everyone has basic human rights. It's difficult for me to consider that someone who could kill innocent children is human. But I'm trying.

I'm just trying to keep more people from being hurt by the events of this terrible day.

I hope that you're all finding a way to find some peace tonight, wherever you are. America, Canada mourns with you.

Kim Stagliano and the Autism Question

I recently read an interesting personal reflection by Kim Stagliano of the Huffington Post about raising her three children with severe autism. She was talking about going with the oldest of them to be made power of medical attorney for the young woman, and about the overwhelming realization that she'd likely always be a caregiver.

"Do you have a standby guardian you can lend us?" she writes, regarding her struggle to figure out who would take care of her girls should she and husband not be able to.  "All it requires is 24/7/365 love, care, attention, physical presence, complete ability to make every decision and about 1,000 other responsibilities." It's a very difficult question to ask. I know from my work doing transition planning with families that many don't ask it because it's just to difficult to answer.

Kim Stagliano had some strong words for those that believe in autism acceptance, as opposed to autism cure. While she acknowledged that " if you do not want prevention, treatment or cure for yourself or your own child -- that is your right", she also talked about being made to feel like a bad parent for wanting those things for her children.
"Those who do not acknowledge and fight for change for the real struggle of families from coast to coast can kiss my polenta," she says.

I agree.

With the last quote, at least.

Kim Stagliano and Families of Children with Autism - Overwhelmed and Undersupported

I've worked closely and over several years with a few families with children with autism like Kim Stagliano describes - autism severe enough that the child has difficulty performing activities of daily living independently, exhibits behaviours that makes him/herself and/or others unsafe, and that makes almost constant or constant supervision necessary. These aren't the clinical factors that determine whether autism is "severe" or "not severe", but they are the things that wear parents down, little by little, until I found myself saying things like:

"I'm more worried about you than your son right now. Let me get you a referral to a counselor."

"If you cry in the meeting, don't worry about it. You've been upset about this for a long time...that's why we're having the meeting, right?"

"I know that the last thing you need is to fill out another form, but this is the next good step to take."

"The only way to do this is plan as best as we can and then take things one day at a time. Are you at a place where you can handle that right now, or do we need to bring in some more resources?"

I marvel at the tenacity of parents of children with severe disabilities, who find the strength to keep facing the challenges that they do, every single day. Because in a world where opportunities and funding for adequate respite by well-trained providers continues to be slashed, supported community integration for people with disabilities through agencies becomes harder to come by, trained support in schools (and therefore opportunities for learning academic, life, and social skills) disappears as school budgets shrink, community health supports that allow people with disabilities to live independently are cut, and community residential living placements become fewer, it's little wonder that parents are feeling crushed by not only the responsibilities of caregiving, but the question of what their child will do when they are no longer around.

But this is where Kim Stagliano and I start to see things differently.

Kids First

I'm uncomfortable with the idea that people with disabilities need a "cure" in general, which I guess puts me in the autism acceptance camp. I don't think that it healthy for parents to pretend to that there's no stress involved in caring for a child with severe autism, or that anyone should suggest minimizing any negative feelings that it may bring up. But kids with autism are kids first, and until there's a day when there is a cure and really something to argue about in terms of "Should I accept autism or should I accept a cure?", the answer seems obvious to me.

Bottom line, kids with disabilities are still kids, and they should be kids first, above all else. Our primary focus (as their parents, family members, educators, support people, etcetera) should be the same as it should be for any other kid: ensuring that they get what they need from their homes, schools, and communities to thrive and to become, to the greatest extent possible, citizens that contribute in positive ways to their communities and to society at large. It seems much more constructive, to me, to assist kids to get to this place by taking the resources that are available and tailoring them to meet an individual's particular strengths and weaknesses and gaps in supports, rather than spend a lot of time saying, "But things would be so different if only my kid didn't just have autism."

That Being Said

I don't know how many resources Kim Stagliano has access to.

Kim Stagliano sounds exhausted, and who wouldn't be? She's been in an incredibly tough, thankless job for eighteen years. If where she lives in anything like Ontario, any meagre funds that she'd received for vital respite or for enrolling the girls in community activities, or for even something as simple as hiring a housekeeper to come in for an hour a week to help her out have been slashed. Unless she's had the girls enrolled in a very progressive school, she's likely had to fight for her girl's rights over and over, and she's probably tired of it. When I worked as a Transition Planning Advisor, I'd have gone with a parent like Kim Stagliano to get a Power of Attorney signed, for moral support; we'd have hashed out some of these tough questions like "standby guardian" together.

Kim Stagliano's idea of helping families of children with autism appears to be putting money into finding cure, I'd rather see money go into putting supports in place that lessen the stress on families of people with autism and that assists people with autism to thrive in community settings.

But would I demonize Kim Stagliano for how she feels? No, no for a second. I always got to go home from my job from the end of the day; she's a parent 24 hours a day, 365 days a year. I can't truly know how she feels, and I don't have the right to judge her. I'm sorry that she's felt felt judged for her position on this issue.

Kim Stagliano's reflection: "Autism Sucks and Then We Die"

Thursday, 13 December 2012

Eva Cameron Won't be Charged for Abandoning her 19-Year-Old Disabled Daughter in a Bar

There's all kinds of wrong about the story of Eva Cameron and how she abandoned her 19-year-old disabled adult child in a Tennessee bar.  It's hard to know where to begin.

Eva Cameron and Caregiver Burn-Out

While I can no way condone the actions of Eva Cameron, I can understand why she pushed to drastic action. According to newspaper reports, she'd been trying to get her daughter, who is physically and intellectually disabled, into a group home for ten years. A social worker had told her to stop calling for emergency medical help. Caregiving was affecting her job and her husband's business, with $12 000 in medical bills to pay. She just couldn't do it anymore. Anyone who has been a caregiver will be able to relate and empathize.

Plenty of Blame to Go Around

This isn't the first time that I've heard of a case of a parent abandoning a disabled adult child out of desperation, and I guarantee that we'll hear about more as budget cuts cause agencies to tighten up more and more:

  • Social workers and case workers have to take increased caseloads and can see clients less and less. Details like "Mom is very stressed and I'm concerned that she'll take off" fall through the cracks

  • Agencies cut programs like adult protective services, which should have been in place for Eva Cameron's daughter the moment a professional saw that she was at risk (assuming that someone saw that)

  • Gov't funding for respite, personal development, and support for community participation for disabled people are getting harder and harder to obtain

  • Spots in community residential placements are very difficult to obtain

It's easy to see why parent caregivers get frustrated and despondent.  And in Tennessee, where Eva Cameron dropped her daughter off, she's not responsible for her daughter's care after age eighteen. However, given her daughter's disabilities and likely ability to comprehend what she'd need to do when she found herself alone, Eva Cameron had a moral responsibility that she did not live up to and should be held accountable. And I rarely use the words "moral responsibility",  so I feel quite strongly about this.

Eva Cameron: What I Don't Have Any Use For

I don't have any patience for a woman who, knowing that *any* passenger in her car needs emergency room attention, let alone her daughter, drives away while her daughter in the bathroom at a bar without leaving her any money or ID. If she could have dropped her daughter off at a bar and driven off, she just as easily could have dropped her off in front of a hospital and driven off.

I understand being tired and overwhelmed and wanting something to just be over. But why not go to a hospital after driving 500 miles? Or call 911 and leave her cell phone in the parking lot, if she didn't want to deal with the ambulance?

She either doesn't care as much as she says she does, or she has some mental health issues that must be addressed for her own comfort and safety and for the safety of any other children that may be in her care.

Ultimately, I agree with the decision made by Tennessee officials this week not to charge Eva Cameron. And I admit that I go back and forth on that sort of thing. I'm torn between wanting to leave things as they are now, where intellectually disabled people are legally treated as adults because of their physical age, and wanting to say, "But but but if they don't understand and need to be kept safe, shouldn't there be safeguards in place?" I get very protective of the people I support. I don't want anything to happen to them.

But I ultimately come back to "slippery slope"...when does someone become "disabled" enough to have to be "protected"? Where do you start to change the laws for them? Where do you stop?

So no, I can't support charging Eva Cameron. But I can still feel sad and scared by what she did.

And just sit here and wait to hear about the next person that does something like it.

Monday, 10 December 2012

Revised Diagnostic Criteria for Autism Approved for DSM-V

The fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) will have the revised diagnostic criteria for autism that's had advocates concerned for most of 2012. The new guidelines call for autistic disorder, Asperger's syndrome, childhood disintegrative disorder and pervasive developmental disorder not otherwise specified to be all folded under the diagnosis of "autistic spectrum disorder".

I've blogged already on how there's mixed reaction to this move. I'm still not sure what to think, myself.

A Good Reason Behind the Revised Diagnostic Criteria for Autism?

The last time the DSM was revised to any substantial degree was 1994 (a couple of years before I started my psychology degree and learned about the DSM myself, for what it's worth). We were taught in my classes that it's the Bible for psychologists. The APA (American Psychiatric Association) doesn't just decide to review it on a whim, and to change it - well, I'm certain that the team of experts in charge of looking into the revised diagnostic criteria for autism was involved in a staggering amount of research, consultation, and discussion about what changes needed to be made and any potential implications. There was even a call for public input in the summer. The revised diagnostic criteria for autism will appear in the DSM-V because a group of very knowledgable people absolutely believed that it needed to be there.

There are major concerns about the revised diagnostic criteria to autism. One of the major concerns is that the new criteria will alter the way that people are diagnosed substantially enough that some autistic people may actually lose their diagnosis, and therefore eligibility for support services. I discuss this concern, and others, at length in these other posts about the revised diagnostic criteria for autism:

Also, about the revised diagnostic criteria and name change for "mental retardation" diagnosis:

Revised Diagnostic Criteria for Autism: Implications for the Autism Acceptance Movement

But I know more about the autism acceptance movement than I did when I blogged about this before, and I have new questions now.  I want to know how that movement feels about forms of autism that sometimes manifest very differently now being all referred to as one thing.

I think it's appropriate to use nationality as a way to discuss my thoughts on this. I'm Canadian. I talk about being Canadian. I describe myself as "Canadian". However, also being born in the East Coast province of Newfoundland, I also sometimes refer to myself as "Newfoundlander" (not "Newfie", for the record. I can't think of very many Newfoundlanders who actually like the term "Newfie"). Newfoundland's culture is very different from the rest of the country's, for a number of reasons. If I'd stayed in Newfoundland and been raised there, my experience of being Canadian would be very different than that of a Canadian born and raised in, say, Ontario. To have someone suddenly say to me, "You can't refer to yourself as "Newfoundlander" anymore.  You must now think of yourself as just Canadian" would feel to me like someone was trying to take a part of my identity away.

Do autistic people feel the same way about the new umbrella diagnosis for autism? From my experience of working with autistic people, I'd say (and someone please correct me if I'm wrong) that the experience of someone with, say, Asperger's Syndrome is likely to be much different than the experience of someone with PDD.  Are the distinctions between different types of autism that important to people who consider autism an important part of their identity? Or is "autistic" enough?

I'm asking these questions because I honestly don't know. Perhaps you could share your opinions, readers?

It will be interesting to see how all of this plays out when the DSM-V is published in Spring 2013.

More about the revised diagnostic criteria for autism in the DSM-V:

Wednesday, 5 December 2012

More on the Convention on the Rights for Persons with Disabilities, forthose that are curious...

These are the GOP Senators who walked right past Bob Dole in a wheelchair, there to petition the Senate to pass the Convention on the Rights of Persons with Disability, and voted "No".

Let's make sure that their names are known.

Convention on the Rights of Persons with Disabilities gets voted downin the Senate

Well, I'd intended to talk about communication barriers today, but something came up yesterday that I think needs discussion: The Convention on the Rights of Persons with Disabilities. Oh, and welcome back to the blog, Rick Santorum. I would have preferred, honestly, that you'd just kept your mouth shut in the wake of the US Senate voting yesterday to reject the UN's Convention on the Rights of Persons with Disabilities, especially after already speaking out so firmly against it at a press conference (disabled daughter in tow, I might add), but I guess that you couldn't resist a chance to get the last word in.

For those who aren't familiar with the Convention on the the Rights of People with Disabilities, the "Washington Post" summed it up very nicely on Dec. 2: "The Convention on the Rights of Persons With Disabilities, which the George W. Bush administration negotiated and signed in 2006, is modeled in large part on the Americans With Disabilities Act, which President George H.W. Bush signed in 1990. It would not require the United States to change its laws, but ratification would give Americans the standing to lobby other nations to follow the U.S. lead and to offer help to those who want to do so. It’s been signed by 154 countries and ratified by 124."

Rick Santorum Speaks out...Again...on the Convention on the Rights of Persons with Disabilities

As I said, Santorum voiced his objections to the Convention on the Rights of Persons with Disabilities at a recent press conference. Which is why I guess he felt compelled to voice them again in a piece on "The Daily Beast" news website this morning:

When I read this, all I read is extremist right-wing paranoia about how signing the Convention on the Rights of Persons with Disabilities, a document meant to say "I will work with other countries to ensure that disabled people all over the world have the same rights as non-disabled people" will somehow take away from the US government's ability to do what it needs to and the freedom of the  US people to live as they want and parent their children in the way that they choose.

Senator Santorum, Meet Me At Camera Three

I'm sorry, Senator Santorum, but the US is not the "world leader when it comes to protecting the disabled". (Neither is Canada, in my opinion, in case anyone thinks I'm trying to set up my own country up to take that honour). I read about what goes on in your country. I read about the "support" that your disabled veterans get when they come home. I've read stories about people in wheelchairs need being able to physically get into emergency shelters when they've needed to. I know that there isn't a policy regarding physical restraint in your schools, and that children with disabilities have been locked in closets and have electric shock used on them as discipline. I know that the Massachusetts  government not only knows about the electric shock treatment used on the children at the Judge Rotenberg Centre, but have allowed it to continue despite the concerns of parents and the community.

So, with all due respect, don't give me "world leader when it comes to protecting the disabled".

I don't doubt for one second that you love your daughter. The Convention on the Rights of Persons with Disabilities is not about taking power away from you. It's about a pledge of support from the world to give something vitally important to her. No one is trying to hurt you.

I don't want anything to do with you, frankly. But I think that your kids deserve the best chance they can get, including Bella.

When the time comes around again to vote on the Convention on the Rights of Persons with Disabilities, please think about how it can fit into everything that I *know* you're doing to make sure that she gets the best chance she can get.

Tuesday, 4 December 2012

Physical Barriers

So yesterday was International Day of Persons with Disabilities, and this year the theme is "Removing barriers to create an inclusive and accessible society for all." I apologize that I didn't get a post out for it. I thought that maybe what I'd do is spend the next couple of posts reflecting on barriers.

Physical Barriers

I think that there's a tendency, when people discuss disability and barriers, to think only of physical barriers. Not to minimize physical barriers. They're certainly enough to deal with. I was in a wheelchair for a year after my stroke, and have walked with a cane for speed and balance ever since, and physical barriers to accessibility are one of my biggest pet peeves. The only reason that my town won't be hearing more from me about how recent street construction made our main street all but impassable for anyone who has trouble getting around for over 6 weeks is that I can see now how the sidewalk renovations eliminate the step up that's historically made access to most stores and restaurants on one side of the street impossible for people in wheelchairs to enter.

I understand the realities of economics as much as anyone else, but I get really tired of money being used as the justification for removing physical barriers to accessibility, particularly in light of the fact that disabled people in America alone spend 13.6 billion dollars on travel each year (see's%20Disability%20Market%20at%20a%20Glance%20-%20FINAL%20-%205-25-2006.pdf ) for other eye-opening statistics on how disabled people are spending their money). Buildings that have physical barriers to accessibility cut off a large customer base. If I can't get into a store to shop (or even hear that physical barriers are preventing people with disabilities from shopping in a store), I'm not likely to go back unless I have no other choice. As a disabled person if I feel that my money isn't welcome, I'll go find another place that will take it.

I get especially annoyed when buildings built using public funds (libraries, schools, government offices) aren't fully accessible. Disabled people pay taxes. They deserve as much as anyone else to have access to these buildings and all the services that they offer. In Ontario, all public buildings are supposed to be accessible at this point, but when I visit some public buildings I find that some things have been overlooked: the building is accessible, but a person in a wheelchair would have to wheel over grass or a gravel path to get the door with the ramp, for example.

Before I became disabled, I didn't notice these things so much. Now I find that I can't help but notice them.

If you ever see an example of a building that is wonderfully accessible (or terribly inaccessible), please contact me. I'll put the name up on the Accessibility Bests and Worsts page.

Tomorrow: Communication Barriers