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Thursday, 29 September 2011

The R-Word Hurts People

Check out this simple-but-powerful video about the R-word. Sometimes we've got no idea
who our words hurt.

http://downsdad.wordpress.com/2011/09/28/a-girl-speaks-out-for-her-brother-about-retarded/

If you're ready, take the pledge at http://www.r-word.org/ to stop using the R-word.  It's nice to see people make a personal commitment to try and stop using the R-word.

I'd never argue that the word should be banned. I don't believe in banning people from using words. I'd like to think that people would just care enough to voluntarily stop using words that offend large groups of people. And I've already talked about how I can see the points of people on both sides of this issue. Ultimately words are just words.

However, the words we use do ultimately impact how people see us, and they say a lot about our intentions. It's difficult to insist that you believe that you believe in communities where everyone can live in dignity and participate to the fully extent possible if you believe it's okay to use language that's become negatively loaded and that pertains to groups that you're trying to make feel welcome.

Words of wisdom to finish with; I haven't been able to find a source.  The bolding is mine.

Watch you thoughts; they become words.
Watch your words; they become actions.
Watch your actions; they become habits.
Watch your habits; they become your character.
Watch your character; it becomes your destiny.

Wednesday, 28 September 2011

When Professionals Become Bullies

Bullies on "FOX and Friends"


This post isn't explicitly about people with disabilities, but it is about people with which many people with disabilities struggle: bullies.

I don't watch "Dancing with the Stars", but I've heard that in this particular run of the series there's
been a great deal of controversy about Chaz Bono being one of the contestants. Chaz was Cher's daughter Chastity until undergoing gender reassignment surgery, and now is one of America's most well-known advocates for transgendered people.

I will leave it to people more competent than I to explain why North America feels so threatened by transgendered people that their reaction to Chaz being on the show was so pronounced, including calls from FOX News contributor Keith Ablow that Chaz leave the show to keep children from wanting to change sex themselves (I will say a hearty "bullshit" to that, though).

I will *post* "FOX and Friends" reaction to the fact that Chaz slipped in the ratings after Tuesday's show, because I think it's among least professional pieces of journalism I've ever seen.

http://gawker.com/5844284/fox--friends-recoil-at-the-mention-of-chaz-bonos-name

For those who can't access the link, it went like this (after all three anchors cringe at the mention of Chaz Bono's name):

Brian Kilmeade: Steve, can you tell us more?
Steve Doocy: Uh, no, I can't. [Laughs] Thank you very for that update.
Gretchen Carlson: [Hands on temples, as though massaging a migraine] Let's talk about the Senate instead! That might take too long to explain to Steve, Brian, and the rest of the world.
Brian Kilmeade: The one part of Chaz that hasn't been operated on!
Steve Doocy: So far! [Laughter]

Ridiculous and Scary


I can't count how many hours my sister has spent on anti-bullying initiatives in the schools in which she's taught. We as a society keep talking about how we have to teach our kids that bullying is unacceptable and that we need to celebrate people who are different than we are.

Only to have so-called "professional journalists" bring this trash to our televisions. With no apology forthcoming today from the bullies, from what I could find.

A world where the media gets away with bullying people makes me concerned about the people with intellectual disabilities in my life. A report from AbilityPath.org says already that students with disabilities are 2-3 times more likely to be targets of bullies than students without disabilities. I told students that bullies and make fun of them aren't worth their time and aren't worth being friends with, but I know it's difficult for them to accept. It's difficult to anyone for accept when people make fun of them.

Leave Chaz Alone


From the little I know of  Chaz Bono, I imagine that it's had to have been incredibly difficult to make the transition he has under such close media scrutiny. That takes guts.

He's more of a man than Brian and Steve will ever be, and infinitely classier than Gretchen. I know that's kind of harsh, "FOX and Friends", but what can I say - bullies just don't do it for me, and you guys are old enough to know better.



Walk a Mile in Their Shoes: Bullying and the Child with Special Needs - A Report by AbilityPath.org  http://www.abilitypath.org/areas-of-development/learning--schools/bullying/articles/walk-a-mile-in-their-shoes.pdf

Tuesday, 27 September 2011

Recruitment Programs: Necessary, or Reverse Discrimination?

Recruitment programs in universities and for some government jobs, along the lines of "affirmative action" programs in America, have always made me feel a bit uncomfortable. I remember writing on a university exam that recruitment programs for racial diversity were a band-aid solution with which we should do away, in favour of focusing on initiatives that truly leveled the playing field for whites and minorities: programs that made it easier for kids from all races to stay in school, and that made higher education more accessible and affordable for everyone.

Are Recruitment Programs Reverse Discrimination?


A couple of the youth with intellectual disabilities with whom I've worked have chosen not to use some social advantages that their status offers them, rather than admit that they have disabilities. I'm not sure whether it was out of a desire not to be lumped in with people with disabilities, or whether they were bothered by what's arguably reverse discrimination. I know that when I considered applying for teacher's college several years ago, I was put off by assertions that the universities I considered welcomed applicants representing different races, religions, sexual orientations, and people with disabilities, to encourage diversity within the student body.

"What, do you want a medal?" I thought, irritated. "You should be doing that anyway, without feeling the need to congratulate yourselves over it!"

I knew it meant that I stood a better chance chance of getting into the teaching school than someone with my academic and extracurricular record who didn't have disabilities. This annoyed me too. I wanted to get in on my own steam, not because of my left side.

A Different Way of Viewing the Issue


I talked to a family friend about it, who said that I shouldn't feel badly about taking my disabilities be a consideration. She pointed out that that having disabilities meant that I'd had to overcome some unique challenges to get to the point where I could get into teacher's college and would mean that I'd have to overcome others to finish it. And, of course, it *is* good for students to be exposed to people in all areas of their lives who have disabilities. When I worked in schools, students were curious about my cane and my arm/hand and how it affected my life, and it actually gave me a common frame of reference that came in handy with some students with disabilities.

I never did end up applying for teacher's college. Ultimately, I believe I'm in now in favour of recruitment programs in principle, despite my answer on the university exam (that was over 10 years ago, after all) but I still really wish that we lived in a world where everyone had equal access to resources, was regarded equally by hiring committees, and gave us no need for recruitment programs. I'll stop there before I get into politics, because I know I said I'd let up on that for a while.

Is a Win-Win Situation A Good Enough Reason?


However, now, two months into unemployment and my only prospect potentially coming from a position perhaps coming from government funding specifically earmarked for creating employment opportunities for people with disabilities, I'm not feeling at all badly about taking advantage of that funding if it becomes available. I live in a very small town where the jobs for which I'm trained require a full driver's license and usually your own vehicle, both of which are at least a year away for me now that my seizures are medically under control.  Many of those jobs also require two functioning hands, as do retail and food service. I'm trying to break into writing, but that may take a while.

There's not a lot in my geographical area, in my line of work, that I can do, given my disabilities. So if there's some government money out there earmarked for creating work for people with disabilities, bring it on. This time I do feel I've got a legitimate claim to it, because it's either use it to compensate for legitimate challenges to obtaining work, or move somewhere else. And I like my where I live. It's good for me. And I like to think that I contribute to my community (and that I could even more, someday).

It's government money for a win-win.

That's a good thing, isn't it?

I'd be interested to hear other peoples' opinions on this.

Monday, 26 September 2011

Letting Go

I'll admit it.  I have trouble letting go of the people I support.

I put a lot into the jobs that I've had. I've seen some difficult stuff, and I like to think that if I just try hard enough, I can save everybody from whatever struggle they're going through.

But, of course, I can't. That's always been difficult for me to accept.

Two Kinds of People


Some people don't want to be saved. That's fine. I can let go in those circumstances. I let them know that they have options, and I offer to help them pursue the options in which they're interested. If I feel that they truly understood what's available to them, I can feel satisfied  that I did my job, whether they felt compelled to take any of those options or not. I can let them go.

It's harder when I feel like the person doesn't truly understand their options, or doesn't understand what will happen if they make a choice (or fail to make a choice). Sometimes, as much as I try to make choices and consequences clear to a person, they just can't (or won't try to) understand. Or there have been times when someone has said that they understand, when they really don't.

During those times, I believe that it's on me, as the support person, to find more effective ways of communicating important information, or to find out why the person is hedging on trying to truly understand important information or make a choice about it...or lie about understanding information.

This sort of work can be very difficult. It's incredibly worthwhile. But it's draining.

Learning that I'm Not Perfect


And when I just can't make that connection, and facilitate that understanding for a person...that's when I have the most trouble letting go.

I expect that everyone who works in a social services setting has to learn lessons like these. I could never seem to quite get it.

Perhaps I'll learn it all better in the next social services job. Even if that's not my next *job*...I doubt I'll stay away from social services forever...

Friday, 23 September 2011

Open Letter As Election Approaches: Children's Aid Society

"Children's Aid Needs Aid"


http://www.orleansstar.ca/News/Local/2011-09-22/article-2755531/Children%26rsquo%3Bs-Aid-Society-needs-aid/1

As some of you may know, Ontario is going to elect a new Premier in October. I have some another concern about youth with disabilities (separate from the one about about funding, about which I've already spoken to my Member of Provincial Parliament).

Talking to the Politicians


Dear Electoral Candidate,

As the election approaches, I feel the need to speak to you about child protection in the province.

I realize that the Children's Aid Society and the Catholic Children's Aid Society provide protection for children and youth up until the age of 16 (and thank goodness for that!) At 16 many teens can handle finding alternate accommodation with a friend or relative if a home situation is still abusive, or even handle independent living if truly necessary.

For teens with physical and/or intellectual disabilities, or a dual diagnosis of a, intellectual disability and a mental condition or an addiction, it's often not so easy. Their needs may make it less likely that people will take them in, and they may not have the skills that they need to live independently. Unless they're coming directly from a Children's Aid situation where they've been a Crown Ward, they can't access the the Extended Care and Maintenance program that would allow them to keep receiving CAS support up to age 21, and they're not eligible for Adult Protective Services until age 18. That leaves many youth with disabilities in a situation where, while they can access other social services to potentially make the time at home easier, they can't access protection services for two years. That's a long time to live in an abusive situation where you don't have the means, skills, or power to get yourself out, especially if you simply don't know how to find the resources that you need.

It wouldn't only only be youth with disabilities in this group. Some non-disabled youth leaving Children's Aid not as Crown Wards are going to need protection for another couple of years just because of their situation as well.  Not everyone is confident about handling life and adult decisions at age 16.

Please raise Children's Aid's funding so that it can adequately meet the needs of children and youth  in Ontario that need it, right up until adult services kick in at age 18. An investment in our children's safety in an investment in their future, Ontario's, and Canada's.  This really needs to be a priority. I'd gladly endorse the party that commits to addressing this within the next four years.

Sincerely,

Sarah Levis

So That's It


I've been thinking about this one for a long time.

I need to find some stamps...

Have a great weekend. :)

Wednesday, 21 September 2011

My AVM Story: My Hand

Every now and then someone asks me if I can expect any further improvement in my left hand. My standard answer is that I don't believe that I'll ever be back to 100% of what I was.

However, my left hand still slowly improves. In a stroke like mine, any improvement after five years is fairly remarkable, and it's now been well over ten years. So any improvement at this point, no matter how small, is really something to feel good about.

If You're Going to Have a Stroke, Do it When You're Young


Having a large stroke at 22 has its advantages (as opposed to having a stroke later in life). I had no other health issues (besides healing from the brain surgery, and the seizures the came from some scar tissue). My body was young and strong.

Most importantly, my brain was young and therefore still high in plasticity. Brain plasticity is a big plus when you're healing from a stroke, because it means that parts of your brain can actually take over for other parts that are damaged. As your brain gets older, it loses plasticity.

Is it brain plasticity that's recently allowed me to start wrapping my left hand around the door handles on Dad's car when I couldn't before? I don't know. But a year ago I would have had to use my right hand to move my thumb to grip something like, and I don't have to anymore.

Too Good at Living with One Hand


I'm actually starting to pick up some relatively narrow objects with my left hand, like my remote control, but not because my thumb wraps easily around them - it moves just enough to act like a shelf, still lying practically lying flush across my hand. Using my left hand too much makes it slowly clench into a fist.

I need to take responsibility for it not being further along than it is. I should be using it more - not go back to those incredibly frustrating hours in occupational therapy where they'd put mt right hand in a glove and and then make me do up buttons with my left hand for an hour, but just make a more concentrated effort to actually *use* my left hand during the day. After over 10 years of living one-handed, I manage pretty well, and it's just become must easier to use my right hand to get something done than deal with the frustration of trying to do it with my left.

So What's the Problem?


It begs the question of why I'd even try to get more function in my left hand, if I can manage with just my right. Well, there are things that I'm *always* going to need two things to do. I'm really limited when it comes to lifting some things, including my new baby niece. Sometimes jars are a challenge. It'd be really nice to have two hands to go on the wheel once I start driving again (my grip in my left hand is strong to begin with, but doesn't stay that way).

It may be time to start occupational therapy on my hand again, to learn how to use it more in everyday life *with* my right hand...

Things to think about, as I plan my next steps...

Monday, 19 September 2011

Living with Spinal Muscular Atrophy in India - Guest Blogger



Today we have a guest post by Pratyush Nalam. Pratyush lives in India, where attitudes toward integrating people with disabilities into society are much different than they are in Canada and the United States. Thank you, Pratyush, for sharing your story with us,


Being differently abled – An Indian Point of View


Hello everyone!! I am Pratyush Nalam, an 18-year old guy living in Mumbai, India. I have just finished high school and entered college for my undergrad. It is wonderful of Sarah to allow me to share my story on this blog.

I suffer from a disability called Spinal Muscular Atrophy (SMA) which is a neuro-muscular and genetic disorder. It essentially means that I cannot walk due to the general weakness of my muscles. I also cannot lift any weight heavier than a one litre bottle. I am confined to a wheelchair and cannot move on my own. This disorder has no cure so I will never be able to walk.

Nonetheless, this hasn’t stopped me from doing anything and I always live life to the fullest.
My parents have been a pillar of support for me and have ensured that I don’t miss out on anything in spite of my disability. They have fought for me to get admission into normal schools. You might find this surprising being in the West, but it is a different story here in India and other developing countries. Schools are reluctant to give admission to students like me because an additional responsibility is placed on their head. This is in contrary to Europe and America where schools are positive about admitting any type of students and go to great lengths to ensure the child is taken care of even if he has special needs. Nevertheless, I must add that I am grateful to the schools I have studied in. They have taken good care of me and I am really indebted to them.

Challenges in Society


Living with a disability here in India (or any developing country for that matter) presents its own set of challenges. The first and foremost is accessibility. This has been the single biggest problem for me right throughout my life. You have steps everywhere but ramps will be present only in a few places. It is a great headache every time I go out. I have to think twice before going out whether it is for a movie, for shopping or just to have dinner at a restaurant. This is the reason I have always used a manual wheelchair instead of a motorised one. Life is much simpler because manual ones are lighter and it is easier for people to life when there are steps.

Another major issue is the attitude of the people themselves. People look at you in a different light whenever they see you in a wheelchair. They show unnecessary sympathy but no empathy. Moreover, you get all sorts of stares when you go out. You get the why-is-this-guy-in-a-wheelchair look as if it is a sin to be in a wheelchair and not be able to walk. There are even people who think that there is something mentally wrong with me. I have had persons asking my parents if I can hear and talk! I mean what nonsense is this! It is a Herculean task to make people understand that I only have a physical disability and my mental facilities are in perfect, working condition.

The Importance of Attitude


These challenges are faced on a day-to-day basis not just by me but anyone who faces a physical disability. Awareness among the common man is extremely low in such issues. Anyway, now I have entered college. I study at the Indian Institute of Technology, Bombay in the field of Computer Science Engineering. The field of technology has been my passion since childhood and hence, I have chosen the aforementioned branch. The institute has been very kind to me and they have been provided me with a motorised wheelchair to travel within the campus as distances on campus are very large. Ramps are present at most places and they have promised to build the remaining ones so that I don’t face any difficulty.

Living with a disability has not stopped me from living life just like anyone else but with some modifications. Life has been generally good and I am grateful to God for whatever I have. I also thank Sarah for allowing me to contribute to her blog. I also blog at  http://reflectionspn.wordpress.com/. It is a more general blog and I blog on all topics. You are free to contribute to my blog too. You can contact me at reflectionspn@gmail.com  or follow me on twitter at http://twitter.com/pratnala.

Questions about Assault...

People with disabilities are much more vulnerable to assault, especially sexual assault than their non-disabled peers.

Stats Don't Lie


After all, consider these 2006 statistics from the Disabled Womens’ Network Ontario:

  • The risk of sexual abuse of people with disabilities appears to be at least 150% of that of individuals of the same sex and similar age without disabilities.

  • It is estimated that only 20% of sexual abuse cases involving disabled people are ever reported to the police, community service agencies, or other authorities.

And this one from L. Stimpson’s and M. Best’s “Courage Above All: Sexual Assault Againt Women with Disabilities”, 1991:

  • 83% of women with disabilities will be sexually assaulted during their lifetime.

"When I was Young and Foolish...


Before the stroke, I  know I put myself in risky situations when there was no need.. I knew during university and college that I should use the Walkhome services, but I rarely did. At first I just couldn’t be bothered, but as the years progressed I really just didn’t want to feel like a victim. I told me friend Carol, “I’ve never been followed,”

“That you know of,” she said, and of course she was right. It still didn’t make me use the walkhome services any more frequently, though.

Reconsidering


After my stroke, I did start to get some unwanted attention from men. From one man, it was scarily unwanted, and forced me to start thinking about things like, “How far would you go if you felt threatened? What’s your safety plan?”

He wasn’t dangerous. He had issues, yes, but when I finally got the guts to firmly set boundaries with him about how I didn’t want him near me, and didn’t want him trying to talk to me or call me, and that I’d get authorities involved if he did, he left me alone.

I think that some of the attention I get from men definitely comes from a personality type that sees the cane and thinks, “There’s someone that needs me to take of her.” But I can spot that dynamic forming pretty quickly, and politely put the brakes on it – I don’t need someone to take care of me, and the man who’s not willing to look at me as anything more than that is just going to be disappointed by me anyway. But honestly, I think that the reason I get more attention from men now has very little to do with my disability:

I walk with a confidence now. I don’t look down anymore.

I look people (even men!) in the eye and smile.

I’m less shy. I like talking to people.

Before the stroke…self-confidence didn’t come so easily. I know it’s strange that now, with a cane and disabilities, it has…but maybe I’ll talk about that another time.

In Light of Stats on Assault on People with Disabilities...


I’m much more careful than I used to be about being in public by myself, particularly at night. I’ve heard enough statistics about women with disabilities and assault (and women and assault in general) that I don't want to become one of them.  There’s making a point – and taking needless risk.  I don’t like to think that I live in fear, but I really was scared by what happened with that guy, and it was very mild as these things go…but it took me a long time to feel safe again.

So, lesson learned. Safety first. Take appropriate precautions for yourselves out there, and teach the young people in your life to do the same, especially ones with disabilities.

Because the stats I quoted are disturbing on several levels:

What is it about a person with a disability that makes the probability of he/she getting assaulted so much higher? Isassault it a perception that they are more easily overpowered? Is it a lower level of respect for their humanity? Is there a (apparently correct perception) perception that they are less likely to "tell", or easier to bully into not telling? When I hear that that Johnson and Sigler's research in 2000 reported that as many as 83% of women and 32% of men with developmental disabilities are victims of sexual assault, it makes me think it's a combination of all of them, and that's just not acceptable.

Why aren't people with disabilities who have been assaulted telling the authorities about it? Are people not taking them seriously? Are they being properly educated on what assault is? Do they value themselves enough to tell? Do they have enough information on what would happen to separate the scare tactic of an assaulter from what would really happen if they went to the police?

Again, not acceptable. But it's the way life is right now.  So we owe it to the people with disabilities in our lives to have these conversations abuse and assault so that they know exactly what they need to do if it happens to them. I've told youth that I've worked with to find one adult that they could trust to tell - a teacher, a parent, an adult, a worker -  and that the adult would help them with the decisions from there.  This approach won't always work. But I believe that it works more often than not.

I got the statistics for this post from a sheet prepared by the Ottawa Rape Crisis Centre: http://orcc.net/PDF/factsheets/Sexual-Assault-Statistics-FS.pdf

Friday, 16 September 2011

If London Can Do It...

Unstoppable Martyn Sibley


I recently attended a very informative webinar on independent living for people with disabilities by Martyn Sibley. As someone with Spinal Muscular Atrophy, Martyn knows his subject matter well.

From his website (http://martynsibley.com): " I am a regular guy who happens to have a disability called Spinal Muscular Atrophy (SMA). This means I cannot walk, lift anything heavier than a book or shower myself."

However, Martyn's disabilities have not stopped him from getting his Master's, working full-time, advocating for for people with disabilities with a number of organizations, living on his own, traveling around the world, and opening his own business. Thinking about what he must do in a day makes me feel exhausted!

Transportation Accessibility in London: Putting Canada to Shame


Martyn is currently living in London, England. I was fascinated by his description of the transportation options available to people with disabilities in London. It seems that most of the cabs, buses and trains, are outfitted with an extendable ramp! Unheard of! People in wheelchairs being able to access *all* the buses, cabs, and trains? An accessibility dream!

[caption id="attachment_994" align="alignright" width="300"] London taxi cab[/caption]

I said to Martyn that I'd never seen that level of transportation accessibility in Canadian cities (basing this on what I've seen in Toronto, Ottawa, Vancouver, and Montreal). The first (and last) time I heard people talking about improving the  accessibility of Toronto's subway stations was when Toronto was trying to get the  2008 Summer Olympics (at that time there were still two stations that people in wheelchairs couldn't get into).

It really does beg the question: If London can have this level of transportation accessibility, why can't Canadian cities? I realize that money's tight and that it would require a mass re-outfitting of...everything.  I don't expect it to happen overnight, the same way that I don't expect any massive change involving people with disabilities to happen overnight.

But I think that the transportation systems in our cities need to start asking themselves the same difficult questions that non-accessible businesses should be asking: How much business are the they losing by remaining inaccessible? Can they really afford, in this day and age, *not* to improve accessibility?

Besides the fact that it's just the right thing to do, as I've talked about in other posts...

Step it up, Canada. London's making us look bad.

More About Martyn


Martyn's conducting his next disability webinar from New York City, where he'll be on vacation. Lucky guy...gets to live in a city that I love, gets to vacation in another city that I love...check out his website for details on the webinars and for more information on his work.

Wednesday, 14 September 2011

Grateful to Be Canadian - Redux

I didn't want to something like this so close to "I'm Afraid of Americans", but I gave myself a scare
the other night.

I knew as I switched to CNN on Monday night that my decision to watch the Republican Presidential Debate was likely against my better judgement.  I'd like to thank Michelle Bachmann and Ron Paul for confirming my suspicions.

Stick to the Facts, Michelle


To be fair to Michelle Bachmann, I don't recall her actually suggesting, as she raked Ron Perry over the coals for his decision to have the HPV vaccine Gardisil administered in schools, that said vaccine causes intellectual disabilities. She has since taken it upon herself since the debate, in less-than-eloquent fashion.

Michelle Bachmann on Gardisil and "mental retardation"



Bachmann's claims have caused quite a stir in both the medical and disabilities community, both of whom seem to agree that she is fear-mongering.

http://www.disabilityscoop.com/2011/09/13/bachmann-creates-stir/13940/



However, Ron Paul gets the award for making me get the closest to throwing something at the television set. As it was, I used some, uh, very unladylike language.

"Ron Paul drives me crazy. Half of what he says is brilliant. And then this happens:


Thank you, Danine Spencer, for summing it all up in this tweet.

I'm forever getting sucked into Ron Paul's trap. He sounds sane compared to the rest of them for the first part of whatever interview/debate I'm watching. Then he just goes off the rails into this "WTF are you thinking??" stuff that makes me despair.

Danine was referring to this:

http://videocafe.crooksandliars.com/karoli/tea-party-audience-cheers-idea-leaving-sick

(Jon Stewart hoped that the people who cheered for the idea of leaving the sick man to die might have missed the fact that Paul actually said "No" when asked if he thought that should happen. I'll leave it to you to watch the clip and decide what you think).

And here's my point.

Proud to be "The Other" for People that Need It"


Ron Paul said that back when he was practicing medicine, churches, neighbours and friends took care of people who were sick and they didn't have to turn people away from hospitals, but that we've forgotten this idea.

I've never worked in a hospital, but I've worked with agencies that have taken on the roles that churches, neighbours or friends would have played in the lives of people with developmental disabilities. I've often thought about how social services sometimes, in that caregiving role, become the "family" for people that have no family.

But for many of the people that I've worked with, they've never known anything *but* a family of caregivers, simply because they were institutionalized at a very young age. They had little, if any, contact with their families. They weren't allowed to make community connections through places like church, or to makes friends outside of the institution. And then, when the institutions started to close, they were sent to communities where they knew no one.

Ron Paul might look down on Canada because he perceives us to be a socialist/welfare state. But my illustration is just a simple one of how just expecting churches/family/neighbours to meet everyone's needs is terribly simplistic and simply doesn't work. Reducing government agency supports to increase a person's independence, when it becomes feasible and just generally healthy for the person, is a worthy goal - when there are natural supports to take over.  Not the other way around. And if that makes me a socialist, so be it.

So there, Ron Paul. Socialist and proud to live in a nation that values taking care of people that don't have the means to take of themselves or people to help them.

(And Michelle Bachmann. I suggest that you assume that you voters are capable of doing basic research before you start tossing the anti-vaccine rhetoric around.)

Last post on American politics for a while. I promise. :)

Monday, 12 September 2011

My AVM Story: Bad Days in Rehab

Some of you may remember reading this entry before. Because of some glitches in my blog, it was deleted. However, I thought that it was an important one, for a variety of reasons, so I'm reprinting it.

All names in this entry have been changed.

Some days in rehab were good.  Some weren't so good.

Rehab Fun

As I said in my previous post, we found ways at Ottawa Rehabilitation Centre to make the days fun. When the work day of physiotherapy, occupational therapy, life skills training, and appointments with social work, neurological testing, and vocational planning were over for the day, we had some time for ourselves. Sometimes I used it in constructive pursuits like practicing my hand-writing or practicing trying to get my scooter turned around in the elevator without hitting a wall. I never missed visiting with the therapy dogs if they were in the centre; I loved their visits.

One weekend when, for some reason, I ended up staying on the ward and a lot of other people happened to be around, we all watched "Galaxy Quest" one afternoon. It's an amusing movie, but not die-laughing funny. Alison, however, got the giggles, and she and I laughed until we could barely breathe. We should have been asked to leave, except that everyone else found us so funny that no one really cared about the movie.

One of the patient's families sponsored a ward Christmas party for all of us. That was the night that we found out

[caption id="attachment_982" align="alignright" width="300"] Fun with bubble wrap...[/caption]

that Helene could tow three people in manual wheelchairs behind her large electric wheelchair. We also discovered that running over bubble wrap in a wheelchair was just as satisfying as popping it with your hands.

Not-So-Fun Days


So there were fun days at rehab. But there were decidedly not-fun days too. One night, we all went down to Arts and Crafts again, to paint plaster Father Christmas tree ornaments. The volunteer instructed us that Father Christmas' robe and hat were to be red or green, the cuffs on the robe, the pom pom and trim on the hat, and Father Christmas' beard were to be white, and his face was to be flesh-tone.

"Screw that," I said to Nick and Angela. "I can barely write my name legibly. I'm not fooling around with  colour changes on itty-bitty areas. My Father Christmas is going to be all green, and he's going to like it."

Nick and Angela saw nothing wrong with this. The volunteer disagreed with them.

"That area is supposed to be white, dear." she said when she came to check on our table. "Would you like a brush to use with the white?"

"No, thank you," I said. "My Father Christmas is going to be all green."

"But that's not the way it's supposed to be, dear. See mine, up at the front?"

Nick and Angela were looking at me. "I see it," I said. "But I can't paint those little bitty areas. Everything is going to end up green anyway. I might as well just paint him green."

"I could help you to paint him the right colours. Would you like that?"

I was getting annoyed. "No, I wouldn't like that. I want to paint him green. But that's obviously a problem, so *you* paint him whatever colour you want. I don't care anymore." I tossed my figure on the table and pushed my chair back. "Catch you later," I said to Angela and Nick as I wheeled away. Nick painted the rest of my Father Christmas green and brought it to me later, but I didn't go back to Arts and Crafts.

Another bad day that springs to mind is the day that I got so frustrated with the brain avm and the stroke and the way that everything had turned out that I threw my cane at the wall. I'd been practicing my walking, and nothing about it in particular was even going wrong. I'd just - had enough.

And, of course, there was the day that I left. I heard that a particular nurse was going to be representing the nursing staff at my discharge conference and for the first time since I was a toddler, I threw a screaming, crying tantrum. She had misrepresented me to a group of doctors during a case conference when I was there, and that amounted to throwing me under the bus, as far as I was concerned. I was not giving her the chance to do it again.

I've had twelve years since the brain AVM surgery and rehabilitation to reflect on whether my perception of her actions was correct. I'm convinced that if I could go back, I'd do the same thing - less emotionally, with more of an appeal to staffing pressures that the centre was under. But I'd stand by my conviction that the only way that woman was coming near my discharge meeting was if she read my other day nurse's notes and was not allowed to comment on what she thought.

Sometimes stroke changes peoples' personalities. The old, timid me would not have stood so firmly on this, to the point where when the centre said, "Nursing won't be present at your discharge meeting, then," I said, "That's fine."

It was quite a move toward me growing a spine.  It's too bad it took a brain AVM and a stroke to get me there.

Canadian Health Care - The Other Side of the Story

Elizabeth McClung has generously agreed to let me post the comment that she made on the post that I sent to ReflectionsPN as my "guest blogger" post - the one that appears in this blog as "Grateful to Be Canadian", in which I talk about how positive my experience with Canada's health care system has been. Elizabeth's story needs to be told too.

Unfortunately, Elizabeth's comment only address a little bit of how Canadian health care has failed her as a person dying of a very, very rare disease affecting her autonomic, autoimmune, and neurological systems. I follow her blog (Screw Bronze! on my blogroll) and have talked with her through email a few times, and am truly saddened and angered by what she and her partner Linda have had to endure just trying to get barely adequate medical and home support care for her - often not even that.

But she's probably got the most positive attitude of just about anyone I know. If you read anger or pain in anything that I quote here - I believe it's just because she's understandably had enough of fighting against a system that, while it for whatever reason worked for me, seems determined to work against her:



"I am really glad you live where you live as being in District of Nanaimo you would have not been sent to the hospital you were sent to, and you would have not have gotten an MRI (since it only operates until 2:30 in the afternoon due to budget cutbacks in staff, which had to take a 10-12% paycut, so most quit and went to Toronto and Calgary), as there is the ONE, and it was bought 30 years ago and has generally a nine month wait list.

I repeatedly am told from people in Toronto, ‘that’s not like it is here.’ which is what people from have-not provinces, from the maritimes to British Columbia end up hearing. I am glad you had Ontario health insurance, which may have made this possible (since, I am not sure that Coast Health would want to cover two operations and rehab in another province, nor have I heard of anyone getting any rehab for stroke out of province – maybe, except the 22 year old I know in this city who simply lives with ‘short life’ and no immune system for something that can be treated…in Ontario).

I am glad it worked, and the story is one which due to the complex nature of payment of healthcare in Canada might be a good example case. My nan did well in living out of our healthcare system, having four cataract transplants; but poor in dying (as hospitals in this city are often full, and up to 60% of the beds are in use by seniors waiting for other seniors to die so they can be slotted into a home). As the worker who told me they were off to take care of 32 individuals for X hours – the idea that individual oxygen or any other needs could be met at less than 2 minutes per person per hour is humorous, and so the turnover rate at our centers are quite high (a month seems to be the average rate, even if they survived 6 months waiting in hospital, once in, a month is about the average, some 2 weeks, some 6).

I am very glad you had a good diagnostic and Vancouver has a great cluster of hospitals, but I think Toronto is even better. If someone is going to cut into your brain, get the best.

I am still in awe that you have a seizure specialist (and that there were two or more in that location). I am glad life moves on and out of the valley of beige and sanitizer. Your experience represents the best of Canadian medicine, thankfully."

Elizabeth, if there's anything I can do, you know you just need to ask.

Friday, 9 September 2011

Seizing Opportunities

Today I came across a "tweet" on Twitter that        asked, "What opportunities have you seized  today?"

(Thank you, Katrina Moody!)

I know I've been MIA over the past couple of  days...and I'm feeling like a truck hit me after  having a root canal done yesterday, so I may  take the weekend off even though I've been a  slacker about posting this week...but here are  some opportunities that I seized this week

  1. I was a guest blogger on a blog called ReflectionsPN: http://reflectionspn.wordpress.com/2011/09/08/sarah-levis-my-avm-story/  I'm looking forward to having ReflectionsPN owner Pratyush Nalam do a piece for Girl With The Cane!

  2. I responded to a call for writers on Disability Horizons (http://disabilityhorizons.com/) and will be doing some writing for them in the very near future.

I'm very excited about both of these things!

Now to get some sleep and hopefully feel human again by Monday...have a great weekend!

Sarah

Tuesday, 6 September 2011

Allow me to introduce someone important...

...myself. :)

After a lot of thinking, I've decided to start blogging under my real name. I feel like I need to put my name to my story as I'm telling it, and also that I need to "own" the opinions that I'm putting out there. I've been blogging under this pseudonym for nearly three months and it feels like it's time to put a bit more of me into this blog.

I still have concerns about protecting people who could be affected by what I write, and have put a lot of thought into blogging with those concerns in mind. I will still change most names to protect privacy...but I'll start noting when I've done that, and I'll go back through the blog over the next while and note when I've done that. However, I'll also back through the blog and change other things as well:

My sister's name is Rachel, not "Karen", and my father's name is Joel. They pretty much put huge parts of their lives on hold from the phone call in Nanaimo until I came home for good from the Ottawa Rehabilitation Centre (Rehab Centre #2; Rehab Centre #1 is Penatanguishene General Hospital). My mother, Jean, died two years before all of this happened.

I am so grateful to my family for everything that they did to stand by me when I was recovering. I'm also grateful to Rachel's then-boyfriend and now husband, Gavin, for the support that he gave to both her and to me; to all my friends (especially Kim, who sat with my family during the craniotomy and then convinced the nurses that she was my adopted sister so that she could come visit me right after)...for the people who visited me, and prayed for me...for my doctors (especially Dr. Katz, who I don't think I ever did thank properly)...

And I'm grateful to all of you for reading. My name is Sarah Levis. It's nice to meet you. :)

Monday, 5 September 2011

I'm Afraid of Americans

Not all of you, of course.  Some of you, I absolutely love, and you know who you are. :)

Jon Stewart for President


Others don't know how much I love them...Jon Stewart being one of them. I figure that he doesn't need to know that I make "I love Jon Stewart" my Facebook status from time to time, just because he's so awesome.  If he decided to run for US President in 2012, I'd throw a rally from here, just to show him that even though even though we can't vote, there's a whole lot of us up here in Canada that would if we could, just because of stuff like this:

http://dailyshow.thecomedynetwork.ca/#player-area (Click on the "August 18th" show and watch the first segment)

(This is a Canadian link; I can't link to the clip through Comedy Central. If you're outside of Canada you should automatically be taken to the Comedy Central site, but if you're not...go to http://www.comedycentral.com/ and look for the first segment of the August 18th episode of "The Daily Show")

 For those not inclined to watch the clip, it's...bone-chilling. Don't get  me wrong, it's full of Stewart's dark humour and razor's-edge wit. But  it's all about how right-wing politicians and the media that typically  offer them the most support (mainly FOX media outlets) tend to view and describe people who use social assistance in America.

And the clips they use of the media people and the politicians are not  one bit funny.

 Social Assistance and Class Warfare


Here are some of the "yuck" moments Stewart found in the recent  media about attitudes toward people on social assistance:

  •  People on welfare being compared to scavenging animals that will just  keep wanting something for nothing if you continue to feed them.

  •  People on social assistance being called "parasites"

  •  Blanket accusations that people on social assistance just want to take "the easy way out", not wanting to end their "free ride" and pay their taxes.

  •  Implication that people living in poverty (less than $22 000 income a year for a family of four) actually *aren't* poor because they have a refrigerator

  • Warren Buffett called a socialist because he suggested that millionaires in the US be required to pay more tax.

I remember discussions that I had on an internet forum a couple of years back with people who were opposed to social assistance programs. I was surprised then at the responses I got when brought up the issue of people with disabilities who can't work, or can't work enough, to support themselves. The one that leaps to mind is "Churches or volunteers should take care of them," because I remember shaking my head and thinking, "There's no use in even continuing this conversation."  It's hard enough to get paid services to ensure care nowadays.

Hateful Attitudes


The anti-social assistance rhetoric seems to have gotten even more hateful in the last couple of years, and it scares me.  It exists in Canada, too.  I remember being shocked when Ontario Premier Mike Harris suggested that people who live on the street choose to be homeless. But that seems tame in comparison to what I hear from the likes of Ann Coulter and her cronies these days.

I'm scared for my friends with disabilities in the US that don't have any choice but to rely on assistance programs to stay alive. I'm tired of seeing them punished and degraded because people that they had nothing to do with abuse the social assistance system.  There will always be people that abuse the social assistance system. It doesn't mean that all the people that use it have to be painted as potential criminals.

I'm *really* tired of the US villianizing its most financially vulnerable citizens as it tries  to balance its books on their backs.  Canada needs to ask itself tough questions about this issue as well.

If our countries were to be judged solely on how we treat those who are least able to care for themselves, how would we fare?



My Brain AVM Story: Cured

In terms of brain AVM treatment, I pretty much hit the jackpot in many ways.

Two Brain AVM Surgeries, But...


Yes, I did go through two surgeries: An embolization to make the brain AVM smaller, and then open-brain surgery to resection the entire thing. And when all of that was over, there was still some AVM that they couldn't get. But it's not like it caused any trouble (it really didn't; the post-surgery bleed that left me with the deficits that I have now happened near the brain AVM, but it wasn't the AVM itself.)  As I talked about in "Finger-Spelling", initially they debated about going back in to see if they could get the last bit of AVM but, for whatever reason, decided against it.

So, until the summer of 2001, I still had that little bit of a chance of another bleed in my head. There's a 4-7% chance each year, non-cumulative, that an AVM will bleed, and my chances were in the higher end of the range. Even so, bleeding again given that I'd bled in 1999 was unlikely. That didn't stop my father from flinching every time he saw me go for the ibuprofen (which was usually to deal with menstrual cramps as opposed to headaches).

I didn't think that much about the little bit of brain AVM. Maybe I figured that if it was going to bleed, there wasn't much I could do about it. I think I mostly just forgot it was there.

Until I went back to my neurosurgeon, to hear the results of my one-year follow-up angiogram.

Cured


First off, after seeing me walk into the office and seeing how my arm had come along, he said that he was finally comfortable enough to open the bottle of scotch that Dad had given him when I'd left Toronto Western (not right there in the office, of course...presumably the next time he wanted a glass of scotch). He said he'd not wanted to until he saw how everything was going to turn out with my recovery, and that he was very pleased with my progress. It was the first inkling that I'd gotten that he'd maybe felt badly about the way things had turned out after the surgery and that he'd worried about my prognosis, even though it had never occurred to any of us to hold him responsible in any way. Dad had given him the scotch because, as far as we were concerned, he'd saved my life. I'm very grateful for everything that he did for me.

Second, he wanted to discuss some very unexpected results on my angiogram. I wouldn't need any more treatment - no radiation, no more surgeries - because that little bit of remaining  brain AVM had sealed itself off. This wasn't unheard of, but was fairly rare. I'd have to come back in a couple of years for another follow-up angiogram, but as far as he was concerned I was cured - ready to be discharged from the brain AVM clinic, unless a day came when I felt symptoms coming on again, in which case I should call them immediately.

Another Redefinition


I didn't know what to say. I spent a couple of days in shock - I'd not thought about that bit of AVM for so long, but I hadn't realized how much I'd built myself on "having an AVM" in the last year and a half. The idea that I now had a clean bill of health (well, besides having a weak left side and a seizure disorder) seemed a little strange. It was another redefinition, and I felt like I'd had enough of those over the last little while.

Unfortunately, most of the time we don't get to choose the times when we have to redefine ourselves. And if there's anything that this whole experience has taught me, it's that dealing with a lot of change in a short time is easier when you're aware of those core things about yourself that you *don't* redefine, no matter what. The things that really say, "This is who I am."

I thought I knew who I was before the brain AVM trouble started...and then I had to redefine myself a bunch of times, and I wasn't sure. But then things got clearer, easier. And if going through all that was what it took to find out who I really am...then it was worth it.

More on the Toronto Western AVM Clinic:

http://www.uhn.ca/Clinics_&_Services/clinics/vascular_malformation.asp

Thursday, 1 September 2011

My AVM Story: You Always Have a Choice

This isn’t explicitly about my AVM, but about one of the events in the months before it, when I lived in British Columbia.

Still Thinking About Some Things...


The jury is still out for me on fate and coincidence. There was a time in my life when I believed that every event in life prepared us for something else, that we moved along according to a great “master plan”, etc…I don’t quite believe that anymore, but I don’t believe that life is just a series of random events, either. I feel like I’ve seen a bit too much to believe that. And there were a number of events during the summer I spent in BC that just prepared me a little too well for the years after. I wrote about some of them in a book of essays that I published about five years ago. It will soon be available through this blog for those that are interested, so keep your eyes open.

But back to British Columbia, and the summer of 1998.

Camping By the River


One night, my friend Andrea and I (who I’d known in high school) hiked a mile into the woods with her friends for a night of camping. We set up the tents and sat by the river, talking and laughing. Someone had brought a pie, which we eagerly ate.

And then Doug got very quiet, and motioned for us to be quiet. He explained that he could hear something just off in the bushes. Andrea whispered to me that Doug had practically grown up in the woods, and had been tracking animals his whole life.

Even after we’d started talking again, Doug’s attention was elsewhere. He eventually said that he was puzzled, because we wouldn’t even hear a cougar and a bear would have “fucked off by now”, which led to a discussion of which animals were on Vancouver Island and whether a person could fight off an Island bear or cougar (both being smaller than their mainland kin).

Not long later, thoroughly freaked out, I helped Andrea rinse the pie plates in the river. We only had backpacks. I had granola bars in my pack, assuming that the cars were going to be closer and that we’d be storing food in them. I’d been brought up on the idea that you always secure food and dirty dishes in a car when camping in bear country, and the packs were just going in the tents. No one else seemed concerned, but I was terrified that we’d heard a bear earlier and that food smells were going to bring him back through tonight.

Realizations in the Dark


So, as the others slept, I weighed my options. I really was terrified. I considered walking out to the car, but I knew I’d never make it up the trail in the dark without getting lost. I wasn’t insisting on rigging up a food pack from a tree branch when no one else seemed concerned. There wasn’t anything I could do.

And it suddenly hit me: There wasn’t anything I could do. If a bear was going to waltz through the campsite, he was going to do it, and no amount of worrying on my part was going to change it. Morning was going to take the same amount of time to come, whether I laid here all night freaking out over what could happen or whether I went to sleep.

I got to choose what my experience was going to be.

So I might as well choose the more pleasant alternative, and go to sleep.

And, after doing some deep breathing, I did.

I Always Have a Choice


One of my best friends says that if she got a tattoo, she’d get words “Are you sure?”, in a place that she can always see it, to remind her before she acts that everything isn’t always as it seems. I think that if I got tattoo, I’d get, “You always have a choice”, to remind me that I can choose my own experience – not always the events, no, but how I’m going to react to them.  It’s a theme that came up continually that summer, and that continues to come up in my life. It was one of the things that got me through the hard times in recovery, and that still gets me through hard times.  Some of the most amazing people I’ve ever met seem to agree that there’s something to it, so I figure I must be on the right track!

And even if I’m not – I figure that if believing in it has gotten me this far, it can’t be that bad a thing.