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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): http://www.tafelmusik.org/concert-calendar/concert/sold-out-sing-along-messiah

The Hallelujah Chorus (abridged) from another Sing-a-Long in the Toronto area last Christmas: http://www.youtube.com/watch?v=ul61-Qu58zo

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:  http://www.cbsnews.com/8301-18560_162-57460553/apps-for-autism-communicating-on-the-ipad/

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:  http://www.girlwiththecane.com/brain-avm-4/

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" http://www.huffingtonpost.com/kim-stagliano/autism-research_b_1926901.html

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.

http://articles.chicagotribune.com/2012-07-23/news/ct-met-tennessee-abandoned-daughter-20120723_1_disabled-daughter-eva-cameron-young-woman

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. http://www.disabilityscoop.com/2012/12/11/mom-abandoned-charges/16932/. 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:

http://www.girlwiththecane.com/diagnostic-criteria-for-autism/

http://www.girlwiththecane.com/revised-diagnostic-criteria-for-autism/

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

http://www.girlwiththecane.com/intellectual-developmental-disorder/

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: http://www.disabilityscoop.com/2012/12/03/psychiatrists-approve-dsm/16878/

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." http://www.washingtonpost.com/opinions/a-yea-on-disabilities/2012/12/02/ce5c6e2c-3cb5-11e2-ae43-cf491b837f7b_story.html

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:

http://www.thedailybeast.com/articles/2012/12/05/santorum-un-disabilities-treaty-would-ve-had-bureaucrats-unseat-parents.html

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 http://www.witeckcombs.com/pdf/America'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

Monday, 26 November 2012

NaNoWriMo and Girl With The Cane Overloaded

So I'm taking another break this week. I know that I just got back. But this month I've joined  300,000 writers in 60  countries in a quest to write a 50 000 word novel during the month of November. It's National Novel Writing Month (NaNoWriMo).

NaNoWriMo...So Close to Being Done...


Yes, that time of year again. It's Week 4 of NaNoWriMo, and I'm at 43 000 words. See http://www.nanowrimo.org/en for an explanation about the wonder that is NaNoWriMo, if you're not familiar.

There's nothing in this for me except a certificate from the NaNoWriMo folk that says I wrote 50 000 words in a month and the satisfaction of knowing that, if I pull this off, I'll have done it twice. And the pleasure of writing some fiction, which I rarely do anymore. Some people do edit their NaNoWriMo books and publish them...and I guess that I should never say never...who knows?

Right now I just want to get to 50 000 words. Writing that many words in a month is difficult when you haven't been disciplining yourself to do so - I wrote 10 000 words this weekend just catch up, and the pace is getting to me. But I am going to finish this, if for nothing else to prove to myself that that finishing it last year wasn't just blind luck.

Plus, I fell on Saturday night and did something to a rib, and I'm in a bit of pain. Not terrible pain - Tylenol is keeping it under control, and the x-rays I had today say that I didn't injure myself in any way that I have to worry about. But, realistically, I need to choose between finishing NaNoWriMo or writing the blog this week - and I really want to finish NaNoWriMo now that I'm so close. Wish me luck!

I'll be updating Twitter and especially the Facebook page...I've found some new bloggers that I'm really excited about, and I'd like to put up some posts from them. So be sure to check it out.

See you in December!

Wednesday, 21 November 2012

"Forever Child": When Disabled Voices Are Silent in the Media

Let me start this post about the "Forever Child" segment that aired on CBC's (Canadian Broadcasting Corporation) "The National" this week with a couple of caveats.

First, I'm aware that there's supposed to be a second part to the "Forever Child" series. I thought it was supposed to air this week on "The National", but I searched the CBC website and couldn't find it. If anyone knows when Part Two of "Forever Child" is airing, I'd really like to view it.

Second, I absolutely empathize with Denise and Murray Hastings, the parents profiled in "Forever Child". As I've written before, I used to work with youth with (sometimes quite severe) intellectual disabilities and their families. I know that there's very, very little out there in terms of support - I've had to be the one that tells the parents so, and it got to a point where it really did tear me apart, where I was asking myself at the end of every day, "What's the point in staying in this job? I can't help these families, because there's nothing out there for them." And I was actually fairly successful at working things out for the youth that I worked with, because I was very persistent and I worked with some very good, very dedicated people who were prepared to look outside the box for solutions and to move mountains if they had to in order to get good outcomes for the people they supported. They know who they are. I wouldn't have lasted nearly as long in that job as I did without them.  It's partly for the parents like the Hastings that I write this blog.  The people in charge of allocating funding for the disabilities sector need to know that families are in crisis.

But I write this blog for disabled people as well. And, frankly, I'm tired of reporting that doesn't give disabled people a voice.

I liked this video for the message that it got out about families in crisis. I did not care for the way Ryan Hastings was portrayed in "Forever Child", starting right from the title.

"Forever Child" is Disrespectful


Ryan Hastings is 29 years old. He is not a child. He is an adult, with an adult body, and adult rights.  He needs a high level of care and assistance with his activities of daily living, yes. But society has many senior citizens who are in the same boat, due to a number of conditions that affect their physical and/or cognitive functioning, and we do not refer to them as children. We recognize that they are adults.

People with intellectual disabilities are already stereotyped as being "eternal children". I understand why his parents call him their "forever child". I understand that using the phrase for the title was to emphasize that because the placements where Ryan Hastings can get the intensive care that he needs are so few  at the moment, he will always be a "child" to his parents in that they will always be providing a high level of care for him.

But, for media purposes, there has to have been a better, more respectful title for this piece than "Forever Child". The parents are not the only people in this story.

Ryan Hastings is Portrayed Disrespectfully in "Forever Child"


And for those that argue that I'm just playing semantics, consider how the video actually portrays Ryan Hastings like he's a child. Would you want these aspects of your life broadcast on national Canadian television and on the web if you were a 29-year-old male?

  • Footage of you without your clothes on as your parents dress you

  • Footage of your soiled adult Depends

Would you want to be standing next to your mother during an interview with her about the pressures of being your caregiver?

We don't know for sure how much Ryan hears and understands. He can't help that he needs support. Even if he doesn't understand a word of it...is it still really fair to him?

Has anyone ever considered that Ryan may sometimes, in his own way, feel the walls closing in on him, as Denise feels that they are on her? He has a vocabulary of ten words - he can only express his thoughts, feelings and desires to a very limited degree.  He and Denise seem constantly at battle over whether he can do what he wants to, when he wants to.  Denise doesn't mention that he has any other relationships besides the ones with her and Murray. His life is as small as theirs. He's as trapped as they are.

It's not Denise and Murray's fault. They're just doing the best they can.

But it's not fair to anyone in that family.

Not Blaming the Hastings



I'm sure that these things have occurred to Denise and Murray Hastings, and that it's all a part of their sorrow. I don't blame them for any of this. They're exhausted, and it sounds like they've lost hope, and it breaks my heart. I wish that I could work with them. I wish there was some way I could help.

No, I don't blame them. I blame a government that doesn't value the work of caregivers and the potential of disabled people enough to properly support either in making sure that disabled people can have full, meaningful days in their communities.

And I absolutely blame the CBC for being another Canadian media outlet that seems to think that this sort of blatantly one-sided reporting is acceptable when it comes to disabled people. We've seen it before, with Global Television's "16x9" segment about Annette Corriveau's fight to legally kill her severely disabled children. I don't like this idea that when there's a human interest story about issues surrounding intellectual disabilities, Canadian media thinks there's only one side of the story to tell, and that only the people that can communicate verbally deserve respect.

I actually debated whether I wanted to write this post, for the very reason that it draws attention to a video that I think was terribly unfair to Ryan Hastings. But I think some important points needed to be made, and I hope that my intentions in sharing and commenting on "Forever Child" are clear. You can view the first installment of "Forever Child" at http://www.cbc.ca/player/News/ID/2306284333/

I hope that the next part of "Forever Child" better meets the high journalistic standards that I've come to expect from the CBC.


Sunday, 18 November 2012

Accessible Streetcars Premiere in Toronto

So, as predicted, Toronto Mayor Rob Ford hasn't done much that has impressed the people who didn't vote him in. A little less predictably, he hasn't done much that's impressed most of the people that voted him in either. However, despite what's seemed like a concerted effort to do everything possible to guarantee never being elected for any sort of public office in the city of Toronto again, Ford's actually pulled off something remarkable on his watch: he got the city's three accessible streetcars on the tracks to tested in the next year, the first new streetcar design to be added to Toronto's fleet in over 25 years. http://www.thestar.com/news/gta/transportation/article/1288334--ttc-unveils-toronto-s-new-streetcars

This is welcome news on the heels of the recent announcement that Windsor, Ontario,  is losing its accessible cabs. While Toronto's accessible streetcars won't help people in Windsor, the disabled community community needed some good news about the direction of accessible transportation in the province. http://blogs.windsorstar.com/2012/10/25/72493/

Accessible Streetcars Are Another Step in the Right Direction


Toronto's transit system has made great strides toward accessibility in the past decade, but there is still a way to go. From the Toronto Transit Corporation (TTC) website:

Today, more than 60 per cent of the train fleet is fully accessible, and nearly half of all Subway/RT stations are wheelchair and scooter friendly. Delivery of the TTC’s next generation of accessible subway trains – the Toronto Rockets – continue to make subway service even more accessible. http://www.ttc.ca/TTC_Accessibility/Easier_access_on_the_TTC/index.jsp

The TTC also runs a Wheel-Trans system that uses accessible buses and contracted taxis. However, a 2011 investigation by the Auditor General revealed that Toronto's Wheel-Trans program has some of the same issues that New York's Access-A-Ride program does: Long wait times, and clients arriving late at destinations. The contracted taxi companies can't keep up with the demand on the program. http://www.cbc.ca/news/canada/toronto/story/2011/11/17/toronto-wheel-trans-review.html

The accessible streetcars will replace 204 cars in the fleet, and the first ones will officially go into service starting in 2014. Each car has room for two bikes, wheelchairs or scooters.

It's definitely very encouraging news.





Wednesday, 14 November 2012

Person-First Language: A Reflection and Apology

I've had my eyes opened about person-first language.

Person-first language is a specific way of speaking about people with disabilities. I just used it, in fact, when I said "people with disabilities". By putting the person before the condition (for example, referring to myself as a "person with disabilities" instead of "disabled"), I affirm my personhood before my condition. I stress that myself and others that I am more than my disabilities.

Readers that are familiar with person-first language likely notice that I use it constantly in this blog. I've never liked the term "disabled", personally. It has negative connotations for me. Particularly right after my stroke, I was hell-bent on distancing myself from the idea that my new physical limitations prevented me from doing what I wanted to, so I wanted my personhood affirmed before my disabilities. I wanted those disabilities to fade into the background as much as possible - not because I saw them as intrinsically bad, but because I wanted them to just be irrelevant.

The Debate About Person-First Language


From the time that I started volunteering with agencies that support with disabilities (there I go again) when I was fifteen, through my developmental services worker training, through my paid employment, the importance of person-first language has been drilled into me. It's automatic. I've read blogs that use "disabled" rather than "person with disability" or "Autistic" rather than "person with autism", and just thought, "Tsk, tsk, no person-first", or assumed that the writer hadn't been educated about it.

After all the times that I've said to ask, not assume...shame on me.

A few days ago, I read this post by Lydia Brown over at Autistic Hoya, and had my mind blown:  http://autistichoya.blogspot.ca/2011/08/significance-of-semantics-person-first.html

I had no idea that so many people felt so strongly about being called "Autistic" as opposed to "person with autism".

I hadn't considered the idea that person-first language, for so many disabled people (Autistic, Blind and Deaf people in particular) does the opposite of what it's intended to do.  And I see their point. When you see autism, for example, as part of what makes you who you are, then attempts to compartmentalize it from your personhood are...insulting. They imply that there's a "you" that exists uninfluenced by autism and its effects on your brain's wiring. They also imply that there's something wrong with autism, that your "personhood" would be enhanced without it.

Lydia and other bloggers that I read on this subject made the argument that we don't use this sort of terminology with any of the other identifiers in life. I do not say, "I am a person with Canadianness/disability advocateness/writingness/daughterness/sisterness/sister-in-lawness/ auntness/ friendness"...I say, "I am a "Canadian/disability advocate/writer/daughter/sister/aunt/ friend".  You can't separate me from these things, any more than you can separate an Autistic person from autism.

And I know from experience, from listening to others, from writing this blog and reading other blogs, that I can't make my disabilities irrelevant. They do affect my experience in this world, no matter how much I wish they wouldn't. I know that person-first language has not made the "personhood" of disabled people safe from poverty, abuse, assault, and even murder, just because of their disabilities. I like to think that I've moved past the idea that my disabilities are something that I *need* to make irrelevant in my life out of fear of peoples' negative perceptions of disability, but perhaps it's time to do some personal reflection on this...and some more intense work on self-acceptance (and my efficacy as an advocate).

I am who I am today because my brain functions a bit differently than other peoples'. I am disabled, and it's fine.

A Sincere Apology


And I apologize from the bottom of my heart to anyone that's been negatively affected by my using person-first language in this blog. I truly did not realize the scope of this issue. I do think that person-first language has its own strengths. But because I now know the extent to which the debate over the appropriateness of person-first language affects the autism community in particular, I won't use it anymore when I talk about autism, and I'm seriously going to reconsider whether I should use person-first language at all anymore.

To some it may sound like an issue of semantics, but it's obviously anything but for many people. I want to be respectful and not make assumptions. I'm rather ashamed that I've gone this long without being aware of the controversy over person-first language. Reading the perspectives of the people who'd rather it not be used has been enlightening and truly humbling.

What are your thoughts on this issue?

Another excellent post by an opponent of person-first language: http://juststimming.wordpress.com/2011/08/23/dear-autism-parents/

Wednesday, 7 November 2012

Obama's In for Four More Years!


Well, I'm back. And until about 11:30 last night, I wasn't sure what I'd be posting about. I hoped it would be exactly what it is - a happy post of congratulations to America for (in my opinion) making the right choice and  extending Obama's Presidency for four more years. Thank you, America. So many Canadians breathed a giant sigh of relief last night.

Election 2012 Wrap-Up


Regular readers know that I got very caught up in this election. I was in the last one as well - but I didn't follow it right from the beginning like I did this one. I considered myself fairly well-informed in 2008 about the issues that really concern me now, and how they interact, but I learned so much more in those four years. What I learned made me feel very, very uncomfortable with extremist Republicans, and I put Mitt Romney and Paul Ryan in that group.

(To be fair, though, I'm uncomfortable with extremist Democrats, too. Extremists in general make me squirmy, and usually end up pissing me off, quite frankly.)

And I'm not so totally enamoured of Obama that my excitement about him being re-elected comes with no reservations. I'm still particularly annoyed by both Romney's and Obama's platforms on people with disabilities, in that neither of them seem to have one. All the news channels could talk about today was how Obama's campaign was particularly strong in that it tried to reach out to minorities. Well, people with disabilities are a large minority in America, and he couldn't give them half an hour at the National Forum on Disability Issues.

I'm watching you, President Obama. And I'm far from the only one.

Obama's The One for this Canuck


All that being said...I like Obama's platform on *people* better than I like Romney's. Much better.

I like Obama's belief that people should have affordable health care.

I like Obama's commitment to education.

I like Obama's belief that a woman has the right to choose what's right for her own body, and his support of women's health care services like Planned Parenthood.

I like Obama's belief that the right to marry shouldn't be limited by sexual orientation.

Yes, I like Obama's People Platform much better. And aren't people with disabilities...people?

I've read his concession speech. I'm an odd mix of inspired and cautious - but I'm hopeful. More than I've been in quite some time.

How about you?

Transcript of Obama's acceptance speech:

http://www.washingtonpost.com/politics/decision2012/president-obamas-acceptance-speech-full-transcript/2012/11/07/ae133e44-28a5-11e2-96b6-8e6a7524553f_story_3.html
Obama's

Tuesday, 23 October 2012

Ann Coulter Calls President Obama "The Retard"

So, after the Presidential debate last night, Ann Coulter tweeted the following: "I highly approve of Romney's decision to be kind and gentle to the retard."

I shouldn't be shocked. She's proven herself this classless before, as evidenced by this tweet from September 26: “Great video: head of GOProud interviewed by retarded person on MSNBC".

Stay Classy, Ann Coulter *rolls eyes*


No, I shouldn't be shocked by bullying by Ann Coulter. I've heard enough awful things from her just over the last couple of months to convince me that I'd be quite happy never hearing another word from her again. But I am shocked. And furious. I've gotten over my initial anger and disgust, but last night I was livid. I cried. I cried because her statement is so, so hateful, on so many levels. I think that Varda over at "The Squashed Bologna" nailed it: http://www.squashedmom.com/2012/10/dear-ann-coulter-this-is-who-you-insult.html

I feel powerless in the face of such blatant bigotry.

I have no idea how to deal with it.

And I'm so angry with myself that I've let Ann Coulter, a woman for whom I have no respect to begin with, get under my skin like this.

Too Tired


I've been having some trouble lately.

I have about four blog posts that need to be finished, and I just can't seem to do it.

They're all good posts, too. One is about how the sidewalks along the main street in my village have been ripped up due to construction for almost a month now, making it impossible for anyone in wheelchairs to pass and increasingly treacherous for mothers with strollers, and anyone with mobility or balance impairments. In a town where largest population demographic is senior citizens, it's affected a lot of people. So why make the decision to rip up the sidewalks on both sides of the road at the same time so that vital businesses on the main street like a bank, grocery store, and two department stores, let alone the one truly accessible restaurant are all but cut off to a large part of the village's population? I don't know. I haven't heard any justification provided to the public. I can't decide whether the municipality just truly didn't think about how this would affect people, or whether they did have an idea and just decided to it anyway.

Quite frankly, based on my past experiences trying to discuss disability issues when they come up in this town and hearing about other peoples' experiences trying to discuss them, I'm afraid to ask. I'm afraid that in my municipality, my status as a person with disabilities means that I really don't count, and that makes me sad.

I'm scared that my status as a person with disabilities in this province, this country, this world, means that I don't really count, and that makes me sad.

I can advocate for myself. I can speak - loudly, if I need to. I can use this blog to bring attention to the way that people with disabilities suffer awful injustices...and the way that so many of them achieve great things in spite of those of those injustices. But lately writing a post about making English muffin pizzas feels like all I can manage.

And that makes me sad, and a little scared...because, as I wrote about in my Thanksgiving post, we've come so far...and yet last night someone thought it was okay to call the President of the United States the R-word. Granted, it was Ann Coulter, who appears to have very little sense about these things. But we all know that it's not just Ann Coulter using the R-word. I've heard workers in my field say, "That's retarded", for God's sake, and I hear it's use defended all the time. Ann Coulter isn't the whole problem by a long shot.

But I'm tired. So, I'm going to take a two week hiatus and regroup and get my head on straight on again. I'll be updating the Facebook page and Twitter, and writing a weekly blog post about my kitchen adventures (by the way, for those that don't check the Facebook page, I used my leftover mushrooms to make a messy-but-tasty omelette last night), but I'm going to going to take the time to...not watch the news, lol, and do some journal-writing, and get myself back in a more positive space.

I hope you'll all be here when I get back. Stay tuned for Operation: One-Handed Chef updates. And please keep on Ann Coulter about this issue, because her disrespect is unacceptable in this day and age.

Sarah

Saturday, 20 October 2012

Operation: One-Handed Chef...Week One

I'd hoped to blog about something more substantial today, but I haven't quite gotten my feelings about it sorted out yet. So I thought that maybe you'd like to hear about the first week's results of Operation: One-Handed Chef.

For those of you that don't recall, Operation: One-Handed Chef is my concerted attempt to integrate more cooking into my life, since it's something that I find difficult to motivate myself to do. I've been trying to find some recipes that I can make with one hand, or that are at least easier to make with one hand, and I'm going to try at least one new one a week.  This week I tried English Muffin Pizzas. The recipe is in the post above this one.

Shopping


I substituted veggies in place of pepperoni on my pizza, and right away ran into an (non-stroke-related) issue that I think is going to come up again and again during Operation: One-Handed Chef: I live alone, and many things come in packages that are simply too big to meet my needs. I wanted mushrooms, and I managed to find them pre-washed and sliced in packages in the produce section (pre-sliced/pre-chopped veggies are a God-send for me), but I'm going to be looking for ways to eat mushrooms with every meal this weekend so that I can use them up before they go bad.

My grocery store used to have packages of pre-sliced green pepper, for stir-fry, but I couldn't find any in the produce section. They're easier to dice than a whole pepper, which is what I ended up buying.

I figured I'd have trouble finding pizza sauce, because I've never seen it come in anything but cans. Most can openers, even electric ones, require two hands to use, so I don't buy any food in cans (although I did see in the other day that there's now a hands-free electric can opener, which I must look into).

But, wonder of wonders, Ragu now makes pizza sauce in a small squeeze bottle!

It made my day. :)

Prep


If I'd only prepped enough of everything to just make my dinner, I probably could have made two English muffin pizzas (I hadn't eaten since breakfast, so I made two servings) in the time suggested in the recipe, or maybe a bit longer. But I wanted to get all the prepping that I had to do over with and done at one time, so that I can just grab the ingredients and throw them into meals as I need to over the next little while. So I diced a full package of mushrooms and a green pepper, grated a package of cheese, and prepared the meal.

That took over an hour, and I was tired by the end. My frustration level stayed surprisingly low, except when the cats smelled cheese when I was grating it and slowly started to close in on me (honestly, the neighbours must really wonder what's going on in here when I'm yelling "Get back! That's my food! STAY AWAY FROM MY FOOD!") but I was more than ready to stop.

The Results


My dinner:

Much better than I thought it would be, actually, even though I couldn't eat all of it. It's surprisingly filling, and I would have been better off to go with my original plan of one muffin and baby carrots (which I forgot to buy).

There's a pic up on Twitter...I'm trying to make it show up here, but it's being stubborn. Stay tuned!

What I'd Do To Make This Experience More "One-Handed Chef"-Friendly



  • I'd originally planned to see if my Pampered Chef chopper could dice, but I decided to just see how far I could get with dicing things myself. Some sort of chopper or food processor would definitely save time.

  • I think that the hands-free can opener is a must. The squeeze bottle pizza sauce is expensive for such a small bottle.

  • The cheese grater is manageable for me at this point, but people who have very little movement in their weak hand hand may want to consider buying pre-grated cheese.

Operation: One-Handed Chef is a success for this week!

Wednesday, 17 October 2012

This Week's "One-Handed" Dish...

...for those that want to cook along...this is a relatively simple one, to start.

English Muffin Pizzas


http://allrecipes.com/recipe/fast-english-muffin-pizzas/

I'm going to make these on Friday night, following the reviewers' suggestion to toast the English muffins first.

I'm not a big fan of pepperoni...I think I will bring out the chopper that I bought at a Pampered Chef party some years ago and never used, and see how good it does at dicing green pepper and mushroom. I'll have leftovers, but I can put them in an omelet on Saturday, maybe.

Perhaps I'll throw in some baby carrots as a side. Good way to get lots of vegetables.

We'll see how it goes with one hand...wish me luck!

Monday, 15 October 2012

Prosecutor's Incompetence Means That Disabled Woman's Rapist Goes Free

Fasten your seat belts, folks. The story of L.K. and the circumstances around the recent overturning of Richard Fourtin's rape conviction has something for everyone.

Richard Fourtin's Case: The Basics


Richard Fourtin was 28 in 2008, when he was convicted of raping a 26-year-old woman with cerebral palsy. Richard Fourtin was to serve 6 years in prison. The Supreme Court of Connecticut recently overturned his conviction, however.

(Sidebar: I typed "disabled woman rape" into Google News to try and find news sources about this story. I found several. I also found, in the first two pages of search returns, stories about six separate incidents of women with disabilities being raped in 2012. I don't want to think about how many that we don't hear about. I don't want to think about how many that just don't get reported.)

The woman that Richard Fourtin raped, referred to as L.K., is thought to have the mental age of a three year old. She is not legally able to consent to sex. However, the Connecticut Supreme Court overturned Fourtin's conviction because 3 of 4 judges ruled that, despite the fact that L.K. has severe physical disabilities and can only communicate by lifting a finger, that she was able to express lack of consent by "biting, kicking, screaming, and gesturing".

http://www.nbcconnecticut.com/news/local/State-Supreme-Court-Tosses-Sex-Assault-Conviction-172269281.html

Opinions, Opinions, Opinions About Richard Fourtin


Horrified? I was too. And judging from the comments on the articles that I read, I wasn't the only one. But I was surprised at some of the reasons.

What I thought was a surprising amount of people called Richard Fourtin a pedophile, for wanting to have sex with someone with the mind of a 3-year-old...like they'd totally glossed over the fact that she has a woman's body. I think that there's a tendency in general to "freeze" people with intellectual disabilities as children, when many are perfectly capable of consenting to sexual activity and want to do so. As is their right.

I responded to a comment that said that "People with physically and mental disabilities aren't able to defend themselves from attack." In L.K.'s case that may be true. In fact, anyone may find themselves, in an attack situation, unable to respond, for any number of reasons: shock, panic, a decision that staying still may ultimately be safer...but if I was attacked and decided to fight back, I think that anyone bargaining on the fact that my being disabled put me at a disadvantage might be surprised. I'm heavier than I look and I've got a lot of strength in my right side. (And I hate blanket statements, obviously...you might as well challenge me to prove that it's not true, although in this case I'm not about to go out looking for someone to attack me in order to do it.)

And there's my typical curiosity about whether the overturning of a rape conviction would be leave the commenting public calling for the judges' heads (and other parts) on a platter if the woman involved didn't have a disability. I realize that people would be angry. But people seem especially angry when injustice is committed against a person with a disability. This is an injustice against women - period. Not just women with disabilities. If you want to talk about sexual assault injustice that's unique to women with disabilities, talk about the fact that women with disabilities are at least twice as likely to be raped or assaulted than women without disabilities.  http://www.ncdsv.org/images/sexualassaultstatistics.pdf

Not As It Seems


It all looks pretty bad. However, if you're going to angry at anyone that Richard Fourtin is out on the streets (and I think we can all agree that he shouldn't be), blame the prosecutor. He screwed up big-time on this one, and even the court tried to tell him so.

Instead of charging Richard Fourtin under a statute sub-section that the prosecutor could have made stick because of L.K.'s inability to consent, he (she?) chose to charge under a sub-section where he needed to show that that L.K. was "powerless" to consent. It seems like a small distinction, but as Ken shows at http://www.popehat.com/2012/10/09/frankly-i-dont-care-how-due-process-makes-you-feel/, it's actually fairly important. The judges didn't feel that the prosecutors showed that L.K. was powerless to consent, so they had to overturn Richard Fourtin's conviction, in order to uphold the law.

It's not within the scope of due process to then say, "But he did something awful, so let's find the right statute to charge him on."  Unfortunately, because of double jeopardy, it's not within the scope of due process to charge Richard Fourtin again with this crime. So he's a free man.

Well, doesn't that lawyer deserve a pat on the back for fucking that right up?

L.K. Has to Live With It


I once worked with a young man with autism, whose family told me that he'd been sexually abused as a young child. They said that they didn't think it affected him. I filed the information away, thinking that perhaps we'd need a referral to a psychiatrist eventually, because I think that these things *always* affect us. I doubt that L.K. will forget what Richard Fourtin did to her, or the four days that it took her to testify about it in court.

Will we ever know for sure how it affects her? Probably not.

But I sure hope that the prosecutor does some thinking about how it might affect her...and loses more than a couple of nights sleep over it. Is that mean?

I don't really care.

More information: http://articles.nydailynews.com/2012-10-04/news/34264568_1_woman-with-cerebral-palsy-handicapped-woman-disabilities

Friday, 12 October 2012

A Moment for Matthew and Amanda

This isn't disability-related, but I think that it's a story that needs telling. I thought about it immediately when I heard the story about the physically disabled young man in Newfoundland that was lured into the forest and assaulted. I'd forgotten, however, how close to the anniversary of Matthew Shepard's assault and death and hospital five days later that we actually were.

Do You Remember Where You Were When You Heard That Matthew Shepard Died?


I do. It was fourteen years ago, 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 people with disabilities - but I haven't. Quite the contrary, actually. I'm hearing more and more stories that make me sad and angry, such as the fact that disability hate crime is up significantly in Britain since Welfare Benefit reform came in.

Amanda Todd: We're Failing Our Children


In Canada, British Columbia teen Amanda Todd took her own life this week, just weeks after posting what only can be described as a cry for help on YouTube several weeks ago. In the video she uses homemade flashcards to document how she was bullied to the point of physical assault at her school, and then cyberbullied once she changed schools. She was just 15.

Amanda Todd was just a teen that made some poor choices. She was being punished enough by the consequences of those choices without her peers jumping in not only to judge, but to encourage her to commit suicide. That sort of bullying behaviour is deplorable - and the fact that it went as far as it did without someone in authority doing something about it is deplorable as well.

http://www.vancouversun.com/technology/Vancouver+area+teen+commits+suicide+after+telling+story+being+cyberbullied+with+video/7375941/story.html

How can we make sure that stories like Matthew Shepard's and Amanda Todd's are not repeated?

Wednesday, 10 October 2012

Commence Operation "One-Handed Chef"

So, I never was a really great cook, even before the stroke made it necessary for me to become a one-handed chef.

When I was much, much younger, I liked to bake. I used to bake cookies after dinner in my elementary school days, before the homework load got to be too heavy. But I moved away from cooking and baking as recreation in high school, and in university I ate like most students do: simply, cheaply, and quickly.

Coaxing the One-Handed Chef  Out of Me...


Most people start their journey to one-handed chef slowly after a stroke. In Penetanguishene Rehab Centre, my occupational therapist suggested that preparing chicken fajitas was pretty ambitious for my return to the kitchen and that perhaps I might want to start with a peanut butter and jelly sandwich. But I've always been kind of "no guts, no glory" with that sort of thing, so I pushed myself hard to make my favourite meal, got myself incredibly frustrated, and was too tired and sad to eat the damn things once they were done. My OT said that I had to eat them anyway, because it was a long time until dinner.

I've made them since. I've mastered the basics of being a one-handed chef. I've made eggs and toast. I make good salads. I made grilled cheese sandwiches for a boyfriend once, not realizing that there was something on the element, the burning of which set off the fire alarm first in my apartment then in my apartment building.  Some tenants still ask me when there's a fire drill, grinning, if I "set this one off". But the sandwiches were good, so I still count that as a success.

But I generally eat very simply - cereal, sandwiches, hard-boiled eggs, salads, the odd microwave dinner, yogurt, fruit, pasta with sauce and cheese. Apple slices and peanut butter are a favourite.  Occasionally I get more ambitious, but cooking is one area of living one-handed that I just haven't mastered. Being a one-handed chef takes far more planning (and one-handed chopping takes far more practice) than I've felt capable of doing on a regular basis without becoming completely overwhelmed, on top of the challenges inherent in cooking for only one person.

However...I'd like to become a better one-handed chef. I'd like to have some recipes for good, healthy meals that are easy to prepare with one hand, and I'd like to improve my skills in the kitchen. It'd be great to be able to bring a dish that I'd prepared myself to a potluck, instead of just buying a dessert from the grocery store. It'd make me feel really good to do that.

Operation One-Handed Chef: The Plan


So I'm going to make a commitment and write it down here, so that I'm accountable to all of you: I'm going to make it a goal to try one new recipe a week, in my quest to become a one-handed chef. I've already gathered some recipes that look appropriate, and I'd love it if you'd contribute any that you find. I'll put them up on a new section on the blog, and on the Facebook and Pinterest pages, and we'll develop an archive for everyone everywhere who wants to become a one-handed chef.

Hopefully the recipes that I've gathered will keep me busy until Christmas, when maybe Santa will bring me a couple of cookbooks that I've had my eye on...

I'm going to start next week, and I'll keep everyone updated on my progress. Anyone want to join me?? Let me know and I'll send you the recipe I've chosen at the beginning of each week!

Tuesday, 9 October 2012

Happy Thanksgiving?

I wanted to write a post about how one of the things that I'm grateful for this Thanksgiving is how far people with disabilities have come. But I didn't quite get there.

Happy Thanksgiving...*sigh*


I was going to start my Thanksgiving post off with this:

"On Thanksgiving Sunday, my father and I watched "The King's Speech" together. My father told me that King George VI had a younger brother, John, who was basically kept in isolation from not only the public, but from the family's day-to-day life because of epilepsy and perhaps autism.  His mother visited him often, and he had a cottage and a full staff of his own, but he was kept out of the public eye and court life because he was "different". Segregating a child from the public eye that way seems as alien an approach to dealing with disability to me as shutting a child with a disability in an institution and forgetting that they exist...or, as a health care professional, suggesting to parents that it's in everyone's best interest to do that."

I wanted to suggest, in my Happy Thanksgiving post,  that we've come oh-so-far since then, with so much success in closing institutions and people with disabilities being treated so much better by the medical community. But then I remembered the posts that I've written about discrimination in granting organ transplants, the attitude that some of the medical establishment holds that babies with Down's Syndrome should be aborted or denied life-saving treatment after birth, and the recent story out of England about the man with an intellectual disability who found a DNR that he'd not consented to in his suitcase when he returned home from a hospital. I remembered the conversations that I've had with colleagues about how group homes are really just little institutions, where abuse can happen just as easily as it did in the larger ones that people fought so hard to close.

I remembered that for several years after my stroke, there wasn't a truly accessible restaurant in my town, and that legislation mandating that government buildings become accessible in my province was enacted only in 2005. Right now, an overhaul of the main street in my town has the sidewalks torn up on both sides, making passage practically impossible for anyone using a manual wheelchair and difficult for anyone with any sort of mobility or balance disability. No one thought of this, apparently, or cared enough in their hurry to get the job done to consider that they should only tear up one side of the street at the time.

I remembered that Henry Miles Frost has been petitioning since before school started to go to the school that's just down the street from him instead of a special school somewhere else. Despite all of the people that stand with Henry, the school board won't be convinced. http://www.facebook.com/IStandWithHenry?fref=ts

I remembered Britain, and how people with disabilities have been struggling there the past year as their benefits have been slashed.

What do you do when it's difficult to remember the positives?

Happy Thanksgiving. Sorry I'm late...

By the way, Prince John died when he was 13. This blog post talks about his story in more detail: http://www.sockitmama.com/2011/04