6.28.2010

Some thoughts on the 20th anniversary of the ADA

After 17 years of living with a disability, I'm no longer surprised when some people ask me "What's the ADA?" The Americans with Disabilities Act will be 20 years old next month, on July 26, 2010. Yet it's a law that's not fully recognized or enforced.

Whenever I use a curbcut or facility that's accessible, I know someone else with a disability has fought for it. Those of us with disabilities have been and remain the primary movers and shakers in enacting change through the ADA on local and national levels.

We have many allies. Sen. Tom Harkin is one of them. His speech on the anniversary of the ADA reflects my experiences. Although he acknowledged the progress all around us, he said something I've found myself saying often:

However, progress under the ADA only happens when people—people like you—understand what the law requires, and then choose to make it a priority to ensure that individuals with disabilities are included in all aspects of community life.

It’s one thing for people with disabilities to have rights on paper and a very different thing to know that they enjoy those rights in everyday practice, especially in their communities and in the workplace. We are in an ongoing fight, a never-ending struggle, to vindicate those rights.


We're in the midst of many changes, some good, some bad. As we celebrate our progress, cutbacks threaten our right to live in the communities we care so much about. Too many of our brothers and sisters with disabilities still remain in institutions, faceless and often voiceless. They can only dream of an opportunity like the disability blog carnival, in which our voices are heard.

Each time we speak up for change, we help ready our communities for our children and others who may not be able to speak for themselves. We may not feel like doing it, we may do it and feel as if we're unheard, or we may even be silenced by families and friends who fail to understand our unwillingness to suffer indignities. Despite this, we need to realize that showing up matters. The words that accompanied the signing of the ADA still ring in the air, even though we have a long way to go, especially with employment of people with disabilities.

“Let the shameful wall of exclusion finally come tumbling down.”

As we sit in the rubble, may we never forget those who began this fight, to whom we owe so much.

6.27.2010

When an editor walks to work: pedestrian advocacy issues

Mary Newsom, the associate editor of the Charlotte Observer, wrote a great piece on pedestrian safety today that should interest all of us. It's entitled "Walk this way. If you can" and includes a list of obstructions and safety concerns she discovered while walking to work once a week since mid-March.

These include unkempt sidewalks with overgrown plants, mud and leaves; sidewalks blocked by garbage bins; what she refers to as "baffling pedestrian lights", some of which are too long a wait or too few and far between; and 'sidewalk closed' signs. A photo shows how a sidewalk is narrowed by growing ivy.

What's interesting about this piece is how many of the same concerns pedestrians share, whether on foot, in a wheelchair, with a guidedog or cane, or pushing a carriage. Many of these issues go unnoticed when people drive by in cars every day. They're unaware of impassable or nonexistent sidewalks and wonder why pedestrians resort to going into the street.

I echo her observation about how property owners don't seem to realize the need to keep their sidewalks clear. This not only includes snow and leaf removal, but protruding bushes and branches and other objects which narrow the walkway so much that it's impassable. Minor overgrowth is one thing- thorny bushes that eat up more than half a sidewalk width need attention.

Finally, Newsom mentions that drivers "can be oblivious to pedestrians. Many ignore the state law giving pedestrians the right of way in crosswalks". She also notes that no pedestrian advocacy group exists.

I also want to mention that drivers need to be aware that areas which are under construction present dangerous pedestrian issues. Sidewalks are often blocked. Street lines may not yet be repainted. Alternative pedestrian routes aren't marked the way alternative driving routes are in these situations, so a pedestrian is left stranded trying to figure out the safest way to get around.

This kind of awareness helps to keep all of us safe. Although I often write about it from a wheelchair user's point of view, this article is a great reminder of how many pedestrian issues we all share in common.

It's certainly sad to see in the comments that people fail to realize that there are pedestrians who have no alternative transportation, like many in the disability community. As paratransit cuts continue to bite into the right to mobility for many, these concerns need to be addressed.

Read more: http://www.charlotteobserver.com/2010/06/27/1527127/walk-this-way-if-you-can.html#ixzz0s3lWGZRQ

6.26.2010

Wimbledon has great towels

I've always been jealous of the towels Wimbledon players get.

Don't get me wrong. I'm grateful for all the paraphernalia I collected over the years when I played wheelchair tennis. There were free FILA jackets, Nike shirts, tournament shirts, and tennis wrist bands in neon colors. I also received about a hundred water bottles and t shirts. Once in a while, I received a hand towel.

But we never got those huge towels the Wimbledon players get. It's not just the size of the towel, but the purple and green colors for the men, pink and blue for the ladies, the royal plush look. Why not? It's Wimbledon.

The Queen of England showed up this week for the first time in 33 years to watch a match. I bet she got a towel. I bet the ball kids get a towel.

But do they appreciate it?

Watching the players carelessly toss around those Wimbledon towels as if they're not worth anything, sometimes even leaving one on a bench, just isn't easy.

So if anyone who reads this is at Wimbledon and someone happens to leave a towel behind, could you do me a favor and get one for me?

Can't hurt to ask.

In other Wimbledon news, there was a historic match this week, the longest tennis match ever played. And a tennis player escaped a lifetime ban after losing it and spitting at fans.

[Cross-posted at We Push Sports].

6.25.2010

Why does it take longer for a quad to get ready in the morning?

Why does it take longer for a quadriplegic to get ready in the morning?

Chris taped how he uses his hospital bed and trapeze and a hoist to help him get out of bed, shower, shave, empty his catheter bag and get dressed. The whole process takes about two hours, even though the video runs a little over a minute.

6.22.2010

Matt's Place: 17 days down, 113 to go....

Matt Eddy, who has Duchenne muscular dystrophy, is wheeling across America to raise money and awareness of the need for housing for people with severe disabilities to keep them out of institutions. Matt, who was given six months to live outside of an institution, has been in his apartment for nine years. Matt's institutionalized care cost approximately $1.2 million a year. It is estimated it costs about $285,000 in the community. His efforts have helped design a prototype apartment which takes into account the need he has to stay on a ventilator and requires personal care, so it includes things like a roll in shower. The video below explains more.

He has already logged in 17 days on his journey from Boston to California.

Roll'n Across America from Shawn P. Morrissey on Vimeo.





You can visit Matt's site here.

6.20.2010

Hitting a ball off of a cliff

Last night while I was on the phone with one of my wheelchair tennis friends, she told me that a golf player had just hit a ball off a cliff on the course at the U.S. Open. Curious, I began to watch too.

Golf has never been a sport I watch. I had paternal cousins who lived up in Connecticut who were avid amateur golfers. I recall visiting them and listening to their tales about golfing, but it never interested me. My friend isn't interested in golf either. But we were riveted to the screen to see how the guy was going to get out of the jam.

Life can be like that too. Our curiosity is sometimes piqued when another person gets into a difficult situation, although as we mature we learn it's far different when a person gets into real trouble in life than a professional athlete hits a ball off of a cliff. Sometimes we watch for a while. We may try to help out. Or we may turn away. You won't hear any sermonizing about this from me. I've had all three reactions, and I've usually regretted turning away or being a passive observer. I've never regretted helping out.

I've learned a deep respect for people who don't treat life situations as a spectator. There are many of them. I meet them, read about them and hear about them. Many don't ask for anything in return. They quietly help out, then go on with their own lives. They don't waste time attributing blame. In fact, if pressed on this point, they remain silent. They let their actions speak for them. They are fathers, mothers, brothers, sisters, aunts, uncles, grandmothers, and grandfathers who come from every walk -or roll- of life. On this Father's Day, I wish each and every one of them the best and thank them for all they do.

And, yes, while I was watching golf last night I was thinking about all of this. I can't watch golf without thinking about something else. Neither can my friend, apparently.

"I wish I could move to California," she said wistfully.

6.19.2010

Aaron Fotheringham: When life gives you limits...

push them!



Visual description: Aaron does wheelchair backflips from a ramp that is several stories high over a gap onto another ramps, successfully landing the backflip after several tries. On the screen it says "What do you consider 'disabled'?"

6.18.2010

It is Enough

There are lots of lessons for me about this phrase lately, both in a material and spiritual sense.

Just when I feel like an utter fool for thinking I can pull off working and trying to afford what I need to do that as a person living with quadriplegia, it hits me again that it's all about faith. I know I have a lot of company out there in these hard economic times when I say that it takes a leap of faith to keep doing the footwork sometimes, especially when naysayers outnumber supporters. That's still the way it is in our present times for people with disabilities and employment and even more so in a recession.

The spiritual sense of "it is enough" encompasses not only those who are seekers, but those who may encounter a dark night of the soul of their own. I found this wonderful poem by Todd Boss entitled "It Is Enough to Enter" and would like to share it. I think its message might be encouraging to some.

And if you ask Roena Hall this morning about any of this, after she was rescued from her front porch steps during a house fire, I bet she would understand.

6.16.2010

Retiring the Kitty Apron



My friend and aide Meredith is moving mid-July after being my personal aide for over six years. Both of us are going through a transition about it. I suppose my end of it is adjusting to new schedules and new faces. Trying to discern what it's like for Meredith isn't always easy.

But there's one thing she's made clear - the kitty apron she wore over here is off limits to anyone else.

So, just as a team retires the jersey of an outstanding, unforgettable player, I'm retiring the kitty apron. I have no stadium wall to hang it on up high, no glass case to place it behind. But the sentiment is the same.

Yes, we'll all adjust. But no one, absolutely no one, gets to wear the kitty apron.

6.15.2010

Before you say you can't....

consider all your options...



[visual description: Mark mows his lawn, leading the attached lawn mower in his power chair.]

6.13.2010

How pedestrian

Yesterday during my roll around town I was thinking about Emily Dickinson. I saw The Belle of Amherst a few weeks ago on Netflix, so she's been on my mind, particularly the soliloquy about words, gossip and the hilarious 'reading the paper' scene.



I wasn't thinking about that as I swerved around tree roots, angled up and down curb cuts, or avoided screeching cars as they took corners on a dime. Lines of poetry were rolling through my head and I kept fighting to keep them there despite the distractions.

Then someone down the block swung into a driveway right in front of my power chair without using a turn signal. Power chairs have no brakes. I threw the joystick into reverse to try to avoid a collision, and the lines flew out of my head after I realized I was still alive.

I told myself: maybe this is why Emily stayed home.

I want to write at the most inopportune times. Lines of poetry come to me when I'm in bed. I'm too tired to get up, transfer out, start up my laptop and voice recognition software and write them down. I tell myself I'll remember them the next day. I think of them in the shower, surrounded by wet towels and slippery surfaces. My muse is not amusing. It's downright mean and it cares not a whit about access.

Emily Dickinson wrote about immortal consciousness:

Behind Me – dips Eternity-
Before Me – Immortality -
Myself – the term between –

For me it's more about-

Behind Me- coming up quickly is a BMW going 20 mph over the speed limit
Before Me- a crumbled curb cut
Myself- a statistic waiting to happen

Very pedestrian, wouldn't you say?

Yet even if I never get down one line of poetry because my voice recognition crashes or my laptop isn't waterproof, that doesn't mean the poem was never written, I tell myself.

I could get a tape recorder. The thought of rolling around muttering into one makes me wonder whether there isn't a better way to get my poetry down.

But if I did that - oh the gossip! Emily would get a chuckle out of that.

6.11.2010

2010 VSA Festival - June 6-12, 2010 Washington DC

via YouTube:
From June 6--12, 2010, VSA—the international organization on arts and disability—will bring together artists, educators, researchers, and policymakers with and without disabilities from around the world for a multicultural celebration of the arts and arts education. The Festival will feature visual, performing, literary, and media artists and a guest list that includes more than 2,000 participants from all corners of the globe. The 2010 International VSA Festival will be the largest arts event featuring artists with disabilities to take place in Washington, D.C., to date.

Here are remarks from the Opening Ceremony:



And a video about the event, that happens only once every five years:

6.09.2010

No disabled seating left? This may be why....

Some people are buying wheelchair accessible seating at events and selling them at a profit as 'luxury seating'.

The Twins have rightly been lauded for making probably the most disability-friendly stadium in the country. They have nearly 800 seats that can accommodate people in wheelchairs or those who have trouble using stairs.

But a lot of those seats are ending up online, on Craigslist or StubHub, Major League Baseball's official resale outlet. For one game, I quickly found more than a dozen. While some used the symbol, "WC," for wheelchair, most didn't. Those tickets get resold at inflated prices to fans who do not need special seats, which may prevent at least some disabled fans from attending games.

via startribune.com


6.07.2010

The Campaign to Cure Paralysis Map - add your name!

Ever wonder if other people living with paralysis live near you? Do you sometimes need a reminder that the community of people affected by paralysis - those of us who live with it, our families, friends and others -is quite large and diverse? Would you like to let others know you are out there as well, especially for those who are newly injured? How about helping to raise awareness of the Campaign to Cure Paralysis?

The Christopher and Dana Reeve Foundation is asking those affected by paralysis -- the injured, their families and friends, caregivers and professionals -- to add their names and stories to the Campaign to Cure Paralysis map, which has been relaunched with better visualization tools and an expanded access to the paralysis community.

They hope that this map will help raise the visibility of the paralysis community, and that those who add their names will also avail themselves of the resources on our site to help them.

You can find the map here. I encourage everyone to participate and be counted and to ask your families, friends, caregivers and professionals to join in as well.

If you've never visited the Reeve Foundation site, take a moment to do so and see the many resources they offer.

6.06.2010

Parish coach excludes third grader with autism from cheerleading squad...

...but the good news is the little girl is still cheering despite the events swirling around her. Last weekend she earned her way onto an all star community cheerleading squad.

The mother of third grader Joanna Petosa says her daughter loves cheerleading and can do the cheers with precision. Nevertheless, she says that St. Christopher's cheerleading coach told her that her daughter is being removed from the squad because she would drag down the other kids.

Sally Petosa says the issue is her daughter's autism. According to her, last year the parents of the team members said they were concerned about Joanna keeping up, so Sally permitted her daughter to be placed on a younger squad and was told this year her daughter would rejoin the group of her own age. Sally gave them a $60 deposit, but was told by the coach that Joanna, who is an A student, could not be on the team this year because "they had come to the conclusion that she didn't have the mental capacity to do the stunts."

A spokesperson for the Archdiocese of New York denies that "the coach called out Joanna's diagnosis". Her explanation is that Joanna didn't make it onto a new competitive team, but could cheer at basketball games with five other girls who also didn't make the team.

However, Sally Petosa says that last weekend Joanna tried out for an all stars cheerleading team called Island Xplosion and made the squad. James DeFranco, the coach of Island Xplosion said that "[Joanna] got on the floor and stretched with the other girls and did all the tumbles, cartwheels and roundoffs. She even learned a whole routine and a jump sequence, while she was here. She did anything any other girl did. She was even quicker than some of them."

Parish officials are referring all questions to the Archdiocese. The director of Staten Island Catholic Charities says he "was angered that St. Christopher's wouldn't give Joanna a chance".

To read more, go here.

6.05.2010

A Place Where the Sidewalk Ends

As I took a walk this morning, I was reminded of Shel Silverstein's poem "Where the Sidewalk Ends"

There is a place where the sidewalk ends

And before the street begins, And there the grass grows soft and white

because suddenly the sidewalk ended and a very green yard lay before me. I stopped my power chair (aka The Beast) and sat there. I couldn't cross the street because there were no curb cuts in sight and the curbs exceeded the height I can safely jump.

So I turned around until I reached a driveway that was pretty close to a driveway across the street and was going to cross, but saw that there wasn't a sidewalk on that part of the street across the street either.


A jogger ran past me in the street. A bicyclist rode by in the street.
I decided to go back the same route I traveled rather than go into the unmarked street. It was safer, especially since this section of road had a blind curve. I see too many headlines about wheelchairs being hit by cars to do that. I wonder, however, whether drivers see joggers and bicyclists on that blind stretch of the road. They are taller. I suppose they can also swerve out of the way (maybe) better. Maybe not. Last year a teen on a bicycle was struck a few blocks away.

It doesn't take long when you travel as a pedestrian to figure out that "sharing the road" is a concept not easily accepted by some drivers. They resent pedestrians of any kind who get in their way, even at well marked crosswalks. And this attitude, ultimately, in addition to not being able to see pedestrians because of road design that fails to take pedestrians into account, can lead to accidents.


Kids get it.

Yes we'll walk with a walk that is measured and slow,
And we'll go where the chalk-white arrows go,

For the children, they mark, and the children, they know

The place where the sidewalk ends.


Check out just the first few minutes of this "wheelcam" video by a wheelchair user going for a cup of coffee and the obstructions he encounters.



And if you've ever wondered what it's like trying to cross poorly planned streets with a guide dog, take a look at this:




If we're going to have mobility for everyone, we need to learn to share the roads.

6.03.2010

What Does One Wheelchair Mean to a Kid In Haiti?

This video of a boy trying out a wheelchair from Can-Do org's Project Haiti speaks for itself.



Can-Do org

6.02.2010

New Book: Do Not Interrupt: A Playful Take on the Art of Conversation

Poet and author Stephen Kuusisto has a new book out entitled Do Not Interrupt: A Playful Take on the Art of Conversation.


Stephen Kuusisto is a poet (and graduate of the Iowa Writers' Workshop) and, in a dual faculty appointment, a teacher of creative nonfiction at the University of Iowa and a public humanities scholar at the university's Carver Center for Macular Degeneration. Kuusisto is enamored of the Greeks, who frequently drew men together (no women or slaves, alas) simply for the purpose of conversation, believing that their skills at conversing made them superior to all other groups. Kuusisto is not out to change behaviors, but he does suggest that conversation has a calming and even healing effect on human relationships, and he lists men and women he believes are among the world's greatest conversationalists. Read the book to find out who they are.

via Bookshelf/Cape Cod Online

You can also find poetry and essays by Stephen Kuusisto at his blog Planet of the Blind.

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