Tuesday, 18 June 2013

Why I'm Inspired Today

I saw a video about Team Hoyt the other night, and I'm inspired.

You may want to watch the video  about Team Hoyt that I've linked to first. I guarantee that you'll be inspired too.  If you don't have the time to watch the full 13 minutes about Team Hoyt right now, come back when you do have time. It's worth it.


In case you don't have time to watch right now, here's the story of Team Hoyt.


Team Hoyt: An Endurance Athletics Team With a Twist

Rick Hoyt is 51 years old. He has cerebral palsy, and can't walk or speak. His father, Dick Hoyt, is 73.

The two are known as Team Hoyt, and they do of endurance racing together: marathons, duathlons, and triathlons, including 6 Ironman competitions and a run across America that took 45 days to complete. Since 1977, Dick has pushed, pulled, and towed his son, using specialized equipment, in over 1000 races.

I had never heard of Team Hoyt before, and I made two assumptions about them when I first started watching the video that I now really regret. Having heard stories before about parents who, because they really enjoy an activity, assume that their children will as well, and seeing the severity of Rick's disabilities, I assumed that this was perhaps a case of a parent who, perhaps without any confirmation that Rick even enjoyed endurance racing, had made it his life.

I'm always talking about the need to stop making assumptions about disabled people, and I'm shocked at how easily I made this one - and the other that walks hand-in-hand with it, that because Rick doesn't communicate using spoken language, he must not communicate. I should know better than that.

Because Rick does communicate. His parents were so convinced that he could that in 1972 they had a computer constructed for him that would allow him to communicate. It was Rick who asked, using the computer, for his father to push him in his wheelchair for their first 5 mile race, and Rick who said afterward, "When I'm running, it feels like my disability disappears." It was his father that described Rick as "very competitive" and who said, "I think it's just something that comes from his body to my body that makes us go faster" when they race, and who cried when the interviewer suggested that the sound that Rick makes as they run must be "the prettiest sound in the world."

Regular readers know that I don't like to use the word "inspiring" when I talk about people with disabilities. I prefer to stay away from saying that Rick Hoyt inspires me, even though he's run all those races, lives alone, graduated from university, and is the face, with his father, of a foundation that helps disabled young people get involved with athletics. I think he's extraordinarily impressive and a fantastic role model, but I still shy away from that idea that he's inspiring because he's disabled.

The story of Tean Hoyt itself inspires me, though, and I was moved to tears by the video.

What Inspires Me About Team Hoyt

Thank God that Dick Hoyt didn't make the same assumption about his son that I did, and that doctors encouraged them to make - that he'd never be "well", that there was no "Rick" in their child's spastic body to know and respond to what was going on around him.

Dick and Judy Hoyt (now divorced) chose to raise their boy at home and "bring him up like any other child" - a brave choice in those days. They chose to believe that there *was* a boy "in there" and gave him a chance to communicate - and when did, his first words were "Go Bruins!", indicating that he not only enjoyed sports, but that he followed them. It inspires me that they insisted that the world give this boy a chance, that they fought for and won the right for him to go school in a time where getting a severely disabled child into a school would have been very difficult.

The difference that was made in this young man's life because somebody said, "I want to hear to what you have to say and I believe it's important," and because they then truly made it important - as important as what any non-disabled person had to say - is what inspires me about this story. In Rick's case, it was his father, his primary caregiver, and you can see in the video the bond of trust and caring that grew out of it. But it doesn't have to be a parent or caregiver that touches a person (disabled or not) that (metaphorically or literally) has been heard - it can be a friend, teacher, support worker, therapist, social worker...it's ideal when the message comes from everyone that's important to the person, and then everyone can both act as a support/resource and be an instrument in generating more support/resources according to their expertise.

Too many times, disabled people (especially those that don't communicate using oral language) don't get their desires for what they want in life taken as seriously as non-disabled do. It's like there's an expectation that they should be grateful with a certain level of fulfillment from life. The same expectation isn't made of non-disabled people. So when come across stories where someone says to a disabled person, "Your dreams are important, so let's see what we can do about getting you where you want to be"...I'm inspired.

And...I'm inspired by anyone who's been told that they don't have a right to dream, and then claims that right anyway.

So yes, Rick and Dick Hoyt inspire me. They inspire the hell out of me. Go Team Hoyt!

Watch the video, and then learn more about Team Hoyt here: http://www.teamhoyt.com/

Tuesday, 11 June 2013

Girl With The Cane 2nd Blogoversary

It's hard to believe that I started this blog two years ago today.

I originally started writing here as something to do when I was between jobs...I never dreamed that I'd learn so much in the process, and that it would bring me into contact with such amazing people.

I never dreamed that I'd get to my first blogoversary, let alone my second!

Thank you to those of you who have been kind enough to link to this blog, and of course to those of you who are kind enough just to take the time to read - that's a real honour, considering that a lot of my posts are ramblings as I try to work out something for myself.

Because while my opinions on some things are pretty set...I certainly don't have all the answers. I appreciate the dialogue that's starting to happen here. It's making me think.

I'm looking forward to continuing this into Year 3...and celebrating the Girl With The Cane Third Blogoversary this time next year!

Sunday, 9 June 2013

My Brain AVM Story: Forgetting May 29

The anniversary of my brain AVM surgery swept right past me this year.

It's not that I go out of my way to make a big deal out of it each year. But I generally remember, on May 29, "Today's the day when I had my brain AVM Surgery, the day when everything changed."  My stroke happened a few days after my brain AVM surgery, but all that time is such a haze that I tend to think of Brain AVM Surgery Day as Stroke Day.

But I didn't think of it at all this year.

What does Forgetting the Anniversary of my Brain AVM Surgery Mean?

I was busy. I'm working in my "hired nerd" job now, doing tech support. I'm writing for Ollibean, as well as doing my personal writing. On the 29th I just would have started another writing/editing/content management job for another website. Considering that I'm doing well if my socks match on any given day, it's a lot to keep track of.

Maybe the significance of Brain AVM Surgery Day in the greater scheme of my life is just fading. Maybe my sense of who I am as a disabled person gives that day less and less power as the years go by. Maybe Brain AVM Surgery day will eventually just mark the day I made, in my mind, the quiet transition from "pre-stroke Sarah" to "post-stroke Sarah"...that I moved from the Sarah that I was when my arm and leg worked and I didn't have to take medication for seizures to the Sarah that I am now that my arm and leg don't work so well and I have to take a whack of pills every day (See Geneen Roth's book "Appetites" for some writing on this idea that pulled me through some rough times).

I don't think much about my arm and leg anymore and how much "better" they'll get, or if they will get any better.  I don't do physiotherapy or occupational therapy and haven't for years. It's not that I don't think, from time to time, things like, "This would really be easier with two hands," or "I need someone with two hands to help me with this," but I either figure out a way to do what I need to or, or I call someone for help, or I wait until there's someone around to help me.

It is what it is.


But it's becoming my own little pull between "acceptance" vs "cure", because I'm slowly discovering that not keeping up with some kind of treatment regimen for the hand and leg, even if it has absolutely no effect on return of function, is having potentially having effects on my health in other ways. I wrote late in 2012 about how significant contracture in the muscles of my calf in my weak leg had brought on a suggestion from a doctor that I wear a brace for a few hours a day. Now it's been suggested that I go see an osteopath about the contracture in my left hand, which I've learned from being a group on Facebook that some people treat with measures as drastic as Botox injections to relax muscles. I even had a doctor suggest to me once that I consider having tendons (or perhaps it was ligaments, I can't remember) cut, but my neurosurgeon did not seem in support of that.

It's been 13 years since Brain AVM Surgery Day and I feel like I'm taking tentative steps into a new phase of my life. I'm not sure where all this new information fits in when I'd basically thought I was happy enough as a disabled person to continue with things as they were...perhaps even happy enough to stop the hyper-vigilent watch for that day in May every year when everything changed.

Nothing ever fits neatly, it seems. But perhaps that's just the nature of life.

I'm trying to stay open to the possibilities and to stay grateful for what I've been given. Which includes you, readers. Thank you for coming along with me on this journey.

Tuesday, 4 June 2013

Thoughts on Sara Hendren and the Revamped ISA Icon

So, there's been an update to the International Sign for Access icon (the little dude in the wheelchair drawn in white against the blue background), and New York City is going to adopt it. Cambridge, Massachusetts resident Sara Hendren did the design. You can read a little more about her  and the redesign process for the ISA icon here.

It's not just New York that's jumped on board with this:

  • Dr. Satendra Singh, coordinator of the Enabling Unit at University College of Medical Sciences & Guru Teg Bahadur Hospital in Delhi, India, has made a request to his government that the updated design be adopted through the entire country. 

  • Gary Christenson, Mayor of Malden Massachusetts, wants to hire integrated groups of students to paint the new design on the town's handicapped parking spaces.

  • Mystic River Charter School and Gordon College (which partnered with Sara Hendren to create the new icon) display it on their grounds.

  • Talbot's, Goodwin Proctor, and CBD Garage in Malden are corporate partners.

Learn more about the Accessible Icon Project here.

Sara Hendren: Why I Like The New ISA Icon

Let me preface this by saying that I don't have anything at all against Sarah Hendren's new ISA icon. I like it, actually, and I think that Sara Hendren did what she set out to do with it. It's a more active, engage depiction of a disabled person, and makes me think of someone moving through life more on their own steam, their own terms. It's a "nice look", if you will, for disabled people, although I can understand the criticism that the icon looks a bit too much like a wheelchair racer, and therefore not really representative of most people in wheelchairs.

But if we're going to get into that...the ISA has always been meant to represent disabled people, and there are a whole lot of disabled people that don't even use a wheelchair. So that particular criticism falls a bit short of the mark for me.

No, my concerns about it lie in a whole other realm.

Sara Hendren: My Concerns About the New ISA Icon

Granted, I know nothing about Dr. Satendra Singh, or Gary Christenson and the City of Malden, or Gordon College, or the prior disability advocacy efforts of Talbot's and Goodwin Proctor. From the little that I've read, it sounds like Singh is a disability advocate in his own right, that Christenson has sights on making Malden much more disability-friendly in general, and that Gordon College has absolute champions for disability rights in Disability Icon team members Brian Glenney and Cyndi McMahon.

New York contact Victor Calaise, the Commissioner of the New York Mayor's Office for People with Disabilities and a disabled man himself, sounds very excited about the project as well.

But I'm cautious. I'd say to any city or institution that embraces the use of Sara Hendren's revamped icon: It's easy to put up signs and paint parking spots. Are you truly on-board with the philosophy behind the new icon? How are you going to show *that*?

New York, I'm Looking At You!

I don't even live in America, and I haven't forgotten the fuss that Michael Bloomberg put up when the Justice Department told him that he had to increase the number of accessible taxis in the city from 2%. I haven't forgotten that you told disabled New Yorkers that they could make do with a dial-a-cab system that sent cabs chronically late, if it sent them at all. And I haven't forgotten that the cab that your administration chose to be *the* New York cab for the next decade isn't accessible without substantial and costly retrofitting, even though there are factory-ready accessible models available.

And I haven't forgotten these comments from Michael Bloomberg...and if I haven't, I'm sure that disabled New Yorkers haven't either:

  • “It’s always somebody who says, ‘oh, no, everything has to be handicapped accessible, or wheelchair accessible,’ but that’s not necessarily what the people that are in wheelchairs need,On the lawsuit against the city stipulating that more accessible taxis are needed:"It just doesn't work in a city like ours, and I don't know that the [U.S. attorney's office] understands how people live in the city and the traffic patterns and that sort of thing,"

  • On the ruling, in appeals, that 231 accessible cabs out of over 13 000 is sufficient: "This ruling is consistent with common sense and the practical needs of both the taxi industry and the disabled, and we will continue our efforts to assist disabled riders."

It still makes me want to beat my head against a wall.

Sara Hendren and the New ISA Icon: The Bottom Line

As much as I like Sara Hendren's revamped ISA icon, I think that there's a danger here. It's not enough to just put it up on our signs and paint it in our handicapped parking spaces and give ourselves self-congratulatory pats on the back because of it.

If there's anything that I've learned since starting to write this blog, it's that the fight has to be deeper, wider, and more substantive than that.

Again, New York, I'm looking at you in particular. The next mayor is really going to have to wow me before I'll be convinced that this move is anything but lip-service.