My Brain AVM Story: “Snowy Day”

Winter is here in Ontario.brain avm story

We haven’t had any snow that’s stuck yet, but the temperature has definitely dropped – we’ve had freezing rain, and the snow won’t be far behind.

I don’t mind the cold so much, but snow annoys me. I’m much better at getting around in it now than I used to be, but it still creates too many obstacles that I just don’t need.

I wrote this short personal essay about winter in 2006, when I was considerably less mobile. It appeared in a book of personal essays that I wrote called “Run, Run Because You Can”. The book is out of print now, but I’m considering bringing it back in E-book form when I get the time to put it together.

Anyway…I hope you enjoy the essay.

Snowy Day

            Today the world is white.  Overnight, the temperature dropped to below -20 degrees Celsius, and we received five centimetres of snow.  The snow will continue to fall all day, the local weatherman assures me, and likely into the afternoon tomorrow. It is winter in Ontario.

I generally volunteer on Wednesday mornings, but today I will not risk walking into town and falling.  They don’t need me badly enough to justify a cab ride.  I could call my father, but I’m sick of bothering him at work for rides.  I call and tell them I will not be in.

Through my window, I watch the white world.  Today, stuck in my apartment, I feel stuck in my life.

“Your problem,” my father told me early on in all of this (and it does seem  oh-so-long ago today) “is that you’ve watched all those medical dramas on television, and you expect for all of this to be resolved in fifty-six minutes…it doesn’t work that way, love.”

Not in fifty-six minutes, I tell the snow, or fifty-six days, or fifty-six weeks, or even fifty-six months.  Soon it will be five years, sixty months, since the stroke.

I want to be fully recovered today.  Right now.

Successful people in our society move.  They are people that “go places”, that are “on the move”, “movin’ on up”, that “rise above the rest”.  They live “on the run”, and “on the go”.  They don’t stand and look at the world through snowy windows, they go out in it and make things happen.

“Stuck” is a knot in my throat and a brick in my stomach.  I will not be going to town.  I will not be going anywhere.  I can’t stop snow or melt ice, and I can’t make my brain realize that I have a perfectly useful left hand.

The thing about being stuck is that I totally put myself there.  You can’t feel stuck unless you’ve convinced yourself that there’s a better, “unstuck” state for you to be living in.

I think about what I would do if I went into town today

On days like this, days where I come up against a wall of “stuck”, I have to remind myself (as gently as possible, for this is the only way in which we should remind ourselves of vitally important things) that “success” in my life will flow from me just doing my best to be me.  Me, with a weak side and faulty wiring in my head!

Comments are closed

Michael J. Fox is Awesome

I saw an amazing interview on Wednesday morning with Michael J. Fox.

Michael J. Fox

Disruptive Philanthropy

Michael J. Fox is Awesome

Michael J. Fox will always hold a special place in my heart because:

1) I love the “Back to the Future” Trilogy

2) He’s Canadian

3) For a person living with a debilitating nerve disease (Parkinson’s), he’s got the best attitude of just about anyone I can think of. It doesn’t seem like anything gets him down (although I’m sure, like all of us, he has his days).

The interview I saw focused mainly on the role that the Michael J. Fox Foundation plays in finding a cure for Parkinson’s disease. Fox sees himself as a “disruptive philanthropist” – he gives money to researchers, but he requires them to report yearly about their progress. This model of funding is apparently quite different from most, and Fox does it because it forces researchers to keep in mind that there are people at the end of the line waiting for the results of this research.

“Patient-Centred” Research

He used the word “patient-centred” in the interview, and I actually laughed out loud. Patient-centred! What an idea!  What a revolutionary concept, to design anything that is supposed to help people – supports, planning processes, research – *around* the people that these things are supposed to help!

Designing anything according to person-centred philosophy is more work. It requires more listening, more patience, and often more creativity to assist people to meet their goals. It can be sometimes be infinitely frustrating. But it’s also infinitely important. It’s a way of showing people respect and of saying to them that their goals and dreams are worthy of being taken seriously. It’s easy to let person-centred methodologies fall by the wayside as staffing levels get cut…but it’s because staffing levels are getting cut that person-centred planning, and creative, community-based ways of  assisting people with disabilities to meet their goals becomes even more important.

But back to Michael J. Fox.

He’s Just Awesome

I’m more and more impressed by this man every time I see him interviewed. Anyone living with any sort of illness or disability can take a lesson from him about taking what life gives you and just…running with it. And about how sometimes being disruptive isn’t always a bad thing. :)

Check out the interview here, including footage of Michael J. Fox’s recent performance of “Johnny B. Goode”:

http://www.ctv.ca/CTVNews/CanadaAM/20111122/michael-j-fox-parkinsons-interview-111122/

Comments are closed

Obama’s Inner Tommy Douglas

My father told me a story over the weekend about Tommy Douglas, the man responsible fortommy douglas bringing universal health care to Canada.

Tommy Douglas and Medicare in Canada

Medicare in Canada began in the province of Saskatchewan. Tommy Douglas was Premier of Saskatchewan when he introduced the legislation for Medicare in 1959, and the doctors in the province were so upset about its potential ramifications that they went on strike in 1962. The town of Kindersley was especially divided over the Medicare issue. It had its own system of health care provision management operating within the town, and didn’t want to give up control to the government.

Douglas asked for a meeting in Kindersley with the town’s biggest supporters and biggest opponents of Medicare. He walked into the meeting, simply said, “You all know who I am, and I know who you are. Medicare *is* going to happen, and it’s going to happen my way,”” turned around and walked out. He got a phone call the next day saying that the folks in Kindersley had managed to work out their differences about Medicare. And a few years ago, Canadians voted Tommy Douglas the Greatest Canadian.

After hearing the story, I thought, “Obama needs to show a bit of that spirit. There’s not enough of ‘This is how it’s going to be’ about him right now.”

Obama Finally Puts His Foot Down

I think we saw some of it the other day, when Obama spoke about the Supercommittee’s failure to agree on how they’re going to make more than a trillion dollars in cuts to the US budget.

Obama expressed regret that the Supercommittee wasn’t able to figure out how to do this.  He said that if they’ve still got time to figure it out before their deadline of 2013. He also said that if they can’t figure it out, there are automatic cuts locked in, totaling 1.2 trillion dollars.  He’d just rather that this be done with a “scalpel” rather than an “ax”.

And he said to those in Congress who are already trying to get those automatic cuts undone, that he’ll veto any of their efforts. The message to me was that, one way or another, these cuts are going to happen…whether people like it or not.

As frightened as I am by what 1.2 trillion in cuts could mean for people with disabilities in America (however the cuts come about)…this is an Obama that I like. He’s finding his inner Tommy Douglas, and that man got a lot of good things done.

More on Tommy Douglas:  http://www.tommydouglas.ca/?page_id=88

Obama’s speech about the Supercommittee: http://www.youtube.com/watch?v=ZYb0C2lvazE

Comments are closed

100 posts!

This is the 100th post to this blog. :)

And we’ve had two guest bloggers, so this makes this my 98th post.

I can’t believe that GirlWithTheCane already has 100 posts. Thank you to everyone who finds time in their day to read what I write here.

I’m having a lot of fun with this, so I plan to keep going for as long as I can…with 3 to 5 posts a week. I’m going to keep the focus on disability and disability issues as much as possible, but I may comment on some other social justice issues from time to time.

I also need to work on find a WordPress theme that will  me to make this website more accessible. That’s a priority.

If you have other suggestions, please let me know!

Thanks again for reading.

– Sarah

Comments are closed

Another Way of Looking at Group Home Closures

Group homes for adults with intellectual disabilities are closing across Canada and the group homesUnited States as a cost-cutting measure for agencies. For some families, losing group home support has already thrown them into a caregiving crisis as they adjust to having a family member who previously lived in a group home at home. But some of these crises are also opportunities for individuals, and families and agencies need to fight to make sure that governments see that and provide adequate support for individuals who have moved into other living arrangements. Because it was the assumption that people with intellectual disabilities couldn’t live in community settings that left them in institutions for so long, and we all know how wrong that assumption was.

Group Homes: Little Institutions

It wasn’t until I actually got some experience in a group setting myself through school that I realized how close they were, with no intention from staff or agency to them being that way, to little institutions themselves. When one or two staff is responsible for five or six people on a shift, there’s no way, in what each resident is supposed to consider his or her own home but has been declared to need staff assistance or supervision, lives on the agency’s schedule and the needs of the house. Dinner is what the staff makes and when the staff makes it. Bedtime is when staff says it is. Outings are when staff has the time. And, as we’ve seen in the recent investigations of the New York State group homes, it’s easy for abuse to go on in these environments.

But What to Do?

I’m not trying in any way to suggest that it’s easy to look after an adult child or sibling with intellectual disabilities full-time at home. There are issues involved with this: supervision (particularly when safety is an issue), care, and helping the individual to construct a meaningful day. But I think we need to ask ourselves, not just because group homes are closing more and more but because sometimes we make an assumption that a group is what the person needs when it may not be…is a group home the only option? Is there another living setting that could work?

For example, if the person doesn’t want to live at home but doesn’t quite have the skills to live alone yet, is there another family that they could pay room and board with, plus a little extra for some support with things that they find difficult to do (laundry or bill paying, etc.) Some agencies help families to set up placements like this.

Or if the person is living at home, what community supports are there to assist with caregiving? Some that may be of help are:

– nursing/supportive housing programs
– day support programs
– adult respite programs
– support workers
– informal support networks such as family and friends

Government funding for these sorts of things is unfortunately low right now right (at least in Canada. It’s a time to be creative, to network with other families, and to pool funding when possible to get the most out of supports. And a time to let your government know that if it expects you to have an individual in your family with a disability of any kind live at home with you, you need the support to make that happen.

The most important part of all of this is our attitude toward this. We can choose to look at people with intellectual disabilities having even closer ties to the community than group homes can give as a burden, or as something worth working toward. I told the teens with which I worked, “Assume the resources are there and that we just have to find them.” I’d rather look at the group home challenge this way, and hope that other agencies will as well as they plan to move people out of the group homes that are closing.

And, of course, that we’ll all continue to advocate for as much support for families as possible.

Comments are closed

Sex and Disability, and a New Book

Sex and disability can be a complicated business, but a new book has just been released that will hopefully help those with questions.

Intellectual Disability and Sexuality

I’ve written before about the widespread (and completely erroneous) assumption that adults with intellectual disabilities don’t have sex drives and therefore don’t need education about sex, sexuality, and sexual safety. http://www.girlwiththecane.com/wp-admin/post.php?post=161&action=edit

It’s not only erroneous, but completely unfair.  People with intellectual disabilities have the right to be in relationships and, when the time is right for both, to express physical love for each other. They may need counseling for longer periods about the potential consequences of decisions of sexual activity…but then again, plenty of people go off and have sex, presumably having gone through sex education in high school, still believing things like “Women can’t get pregnant the first time they have sex”.   *Everyone*, people with intellectual disabilities included, needs good, quality sexual education.

But, we already know that I have strong feelings on that. And I’ve certainly thought about sexuality issues for people with physical disabilities – but issues for people with intellectual disabilities have always dominated, because of the work that I do. Until recently, after some conversations with some women with physical disabilities. And then I saw the news about this book on Twitter, which made me think even more.

This blog is about how pleased I was to see that a book about sex has been written for people with all sorts of disabilities.

http://www.beyond-ability.com/disability/the-ultimate-guide-to-sex-and-disability-for-all-of-us-who-live-with-disabilities-chronic-pain-and-illness

sexuality

“The Ultimate Guide to Sex and Disability”: For All of Us Who Live With Disabilities, Chronic Pain, and Illness”

Because, like accessibility issues, most people just don’t think about how a physical disability and/or illness and/or chronic pain would affect their sex life until it becomes an issue. And there simply aren’t enough resources out there to help people navigate sex and disability, given that sex is such a difficult issue for so many people to talk about to begin with.

With so many professionals saying that sexuality is such an important part of our make-up, there’s no way that this part of life should just be expected to end because of a disability or illness or chronic pain. Sex and disability should be able to co-exist. I’m happy to see that “The Ultimate Guide to Sex and Disability” has been published. I hope that it helps people  to discuss issues around disability and sexuality with partners, medical staff, and care providers, and that the people they talk with will be open to hearing the information that the book presents. Open, non-judgmental dialogue about this subject is very important.

I may even buy “The Ultimate Guide to Sex and Disability” myself…learning is always a good thing, right?

 

 

Comments are closed

“Differently Abled”

I’ve never been crazy about the phrase “differently abled”. I remember first hearing it

differently abled

More commonalities than differences

when I went away to university, in a school sponsored disability-awareness program, and it always struck me as…trying too hard. I think that I don’t really like it now because it emphasizes the differences between people with disabilities and non-disabled people, more than the similarities.

“Differently Abled” and “It’s All Relative”

I’m not the only one who feels this way, I’ve noticed. I recently read an article by a man who said that he wished that we’d do away with the practice of having non-disabled people spend a day in a wheelchair or otherwise spend time “experiencing” what a person with a person with a disability does (like going blindfolded for a period of time). He says it just emphasizes what people with disabilities *can’t* do, rather than what they can do. Being “differently abled” still means “different”.

But I wrote the phrase “it’s all relative” while replying to a comment yesterday, after having it in my head in the last couple of days, and yesterday I began to think about what it really meant. For instance, I’ve been lamenting the fact that one of my cats is getting a bit…hefty. Especially if compare her to a hamster. But compared to a cow, she’s very light.

And while I may put on my bra strangely compared to women with two hands, my friend on Facebook who broke her hand and had no idea how she was going to get dressed for work told me that I was a lifesaver when I told her how I did it.

Not So Different from You

That wasn’t so long ago…maybe two years. But it was the closest I’ve come to seeing “differently abled” as something accurate and half-way positive. I have a different skill set than people who use two hands do to do daily activities, yes.

But I still do the same activities as able-bodied people. I buy groceries and make food and make my bed and clean my apartment and do my laundry…I’ve gone hiking through the forest and downhill skiing (using something they call a sit-ski) and dancing and travelling on my own…

I think that people with disabilities can choose to look at their “difference” from others as absolute or relative, and that the people who look at it as relative tend to have a more positive view of living life with disabilities.

I may be “differently abled”, but I’m not so different from the rest of you. Really.

Comments are closed

My Brain AVM Story: Daylight Savings Time and Stubborn Me

It’s now Daylight Savings Time, which used to mean a couple of things in my world:daylight savings time

  • It was dark…so much more earlier.
  • Snow was near. I hate snow.
  • I could count on that nagging  “a little blue” feeling getting exponentially worse.
I don’t have so much of a problem with Daylight Savings Time now, mood-wise. I think that my moods will always be connected to the seasons and the amount of sunlight that I get, but I know better now how to prepare for less sunlight and compensate for it. I don’t feel like my world is ending when I turn my clocks back.
And, of course, I just don’t turn one of my clocks back.

Daylight Savings Time: A Two-Hand Job

If you’ve never tried to take a wall clock down, turn it back, and put it back up…it’s a two-hand job. Especially if it hangs off a little nail in the wall that recedes into the wall if you don’t put the clock back – *just so*. I grew frustrated of dealing with this twice a year and just stopped changing my clock.
There are plenty of people that I could ask to help me turn back the wall clock  for Daylight Savings time, and to move it forward again in the Spring. But I don’t, and I’m really not sure why. Usually, a visitor gets sick of having to subtract the extra hour that I get used to doing without thinking and asks if they can change it for me.  But some years I’ve gone straight through Daylight Savings Time to the spring, when the clocks spring forward again, and thought, “Cool, the clock is going to be right again.”
I think that this is definitely an example of a time when I need the “Confront me if I don’t ask for help” sign. With the amount of people out there who are willing to help me, there is no reason why my clock should be wrong for half the year.
Comments are closed

The New York State Group Homes Situation

I found an awesome commentary on the New York Time’s “Abused and Used” series that I thinkNew York State group homes should be required reading for everyone. I think that you can get the message without having read the articles, but for those who like a bit of backstory: The “Abused and Used” series examines a review that the New York Times did on some previously unreleased data about the mortality rates in New York State group homes for people with intellectual disabilities. The Times found that in the last decade, 1200 deaths have in state and privately-run New York State group homes have been attributed to unnatural or unknown causes – that’s 1 in 6. And that number is the start of a story of abuse reports, poorly-trained workers, lack of safety protocols (and little or no review of safety protocols when a death happens) and little accountability for residents’ safety in New York State group homes that just made me feel sick.

http://www.nytimes.com/2011/11/06/nyregion/at-state-homes-simple-tasks-and-fatal-results.html?_r=2&pagewanted=1

What the New York State Group Homes Situation Tells Us

There’s obviously something in our society that’s still very apathetic toward people with disabilities, or the situation in New York State group homes would not have happened – some governing body would have seen what was happening and snapped to attention long before it got to this point. I like Zoe Wool’s take on it (this is the required reading I was talking about earlier):

http://savageminds.org/2011/11/06/valuing-life-death-and-disability-sorting-people-in-the-new-york-times/comment-page-1/#comment-708957

The problem is (and the family of  one the residents who died also said this; see link to article in the first section) is that we don’t value people with disabilities in our society. Wool suggests it’s because we value people with disabilities relative to what kind of contribution they make (or made), rather than on their inherent personhood, to the point it determines how we speak about them.

Or whether we try to assist them to have a life or,  just try to keep them alive.

That sort of difference shouldn’t exist. Everyone with a disability should have access to the resources that they need to not only live safely and with dignity, but to have equal access to the community and opportunities to build the life that they desire that people without disabilities do. We don’t need further inequality lines within the disability community itself.

What to Do?

This is why we have to whole-heartedly support efforts by people such as Nicky Clark to stomp out disability hate speech. Because when you can call people with disabilities disgusting names, it’s not that much further to believing it’s okay to do things like slack off on those boring, inconvenient little things that you have to do in your job to keep them safe (like make sure food is cut up small enough so they won’t choke and then actually stick around to see that they don’t choke while they’re eating; see link to article in the first section), and just a bit further to justifying withholding food. I don’t know how people get to the point where they physically and/or sexually abuse residents, but apparently plenty of both was going on as well, rarely reported to police, and dealt with internally by moving the abusing staff to another home where they would abuse again.

http://www.nytimes.com/2011/03/13/nyregion/13homes.html?pagewanted=1

And I don’t know why people like this even want to work in group homes, or how they get past the interview process, but obviously in the New York State group homes a whole lot of them did…and now we’re seeing what happens when they get shuffled from house to house instead of fired and when the system doesn’t have enough safeguards to make sure the damage they do doesn’t happen again.

It makes me wonder how many other states this sort of thing is happening in… :(

Archive of the “Abused and Used” series about New York State group homes:

http://www.nytimes.com/interactive/nyregion/abused-and-used-series-page.html?src=tp

Comments are closed

Lessons at Lunch

I caught up with a friend with an intellectual disability over lunch one day last week.chaz bono We hadn’t seen each other in a while, so we talked about a lot of things, among them the fact that she won’t be watching “Dancing With the Stars” next season. It’s one of her favourite television programs, but she’s upset about the way the judges have “teased” Chaz Bono for being overweight.

Chaz Bono and the Media

I’ve blogged here about “Dancing with the Stars” and the ignorant way the media’s treated Chaz’s decision to have gender reassignment surgery. http://www.girlwiththecane.com/bullies/ I don’t watch DWTS myself, but entertainment news filters through to me (usually). I think that Chaz Bono has handled himself with a great deal of class and dignity, being in the spotlight through the whole process and then going on DWTS despite public objection based on ridiculousness such as, “He’ll make our children want to change genders.”

I’m Not Perfect

I made two errors in talking to my friend about this: I assumed that she’d misunderstood the gender re-assignment issue, and I assumed that I knew more about what was going on in the show than she did (even though I haven’t been watching the show!) Actually, the judges have been denigrating Chaz Bono because of his weight:

http://abcnews.go.com/blogs/entertainment/2011/10/chaz-bono-dancing-with-the-stars-judges-treat-overweight-men-women-differently/.

But I, assuming that I knew more than her, I explained that they were really making fun of him because he used to be a girl. And boy, did I feel silly (and humbled) when I did some research and discovered how upset Chaz has really been about the names the judges have called him: Ewok, penguin, and basketball.

Lessons for a Monday

So, Lesson #1: Don’t make assumptions. I’m pretty good at not doing that in my work, but obviously sometimes I need a reminder.

My friend took the news that Chaz used to be a girl totally in stride. “They shouldn’t make fun of him for that, either,” she said. “They just shouldn’t be making fun of people for who they are.”

“You’re right,” I said. “It’s none of their business.”

“That’s right!” she said. “I hope that Cher sues them!”

Lesson #2: Accept people for who they are. Sometimes I think we all need a reminder.

It was a great lunch.

Happy Monday. :)

 

Comments are closed

Stop Copying Plugin made by VLC Media Player