Archive | 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  nanowrimocountries 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!

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“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” thisForever Child 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 “16×9″ 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.

 

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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 littleaccessible streetcars 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.

 

 

 

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Person-First Language: A Reflection and Apology

I’ve had my eyes opened about person-first language.people-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/

 

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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 Kim Staglianowith 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

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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

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