Friday, November 28, 2008

The Next Blog Carnival is UP and other stuff!

A few things on the web that are too good to miss:

I updated it in my post from the other day, but Gary Presley's book has had a rave review in the New York Times!

The Next Blog Carnival is up at The Life and Times of Emma. The theme is "I am." (I think I missed posting that the Blog Carnival on Lists was up 2 weeks ago--good reading over there, some quite funny... check it out!)

I read this post this week over at Wheelie Catholic. Births of children with Down syndrome are rising in the UK... It sounds like the conventional wisdom there is becoming 'life with Down syndrome is not so bad.' What would it take to make that happen in the US? What would it take to expand that to include other disabilities??

In the US we're basking in the glow of Thankfulness and those of us who are not blogging this morning are shopping... In honor of the official start of the gift-shopping season, here is a blog that shares lots of Assistive Tech stuff all year and has gift suggestions for folks with disabilities up now. He will be posting a blog carnival of AT gift ideas in a couple of weeks--watch for that!

Wednesday, November 26, 2008

Our Friend Ange: A Life Anyone Would Want

I met my husband back in May of 1985 and within a couple of weeks he took me out to meet the friends he grew up with. They called themselves The Eastside Hecklers—this only worried me a little!

What a group! They were a bunch of guys and girls who all grew up together in one big neighborhood. Several, but not all of them, were of Italian descent, some of them went to the same grade school or high school or church…They had lots of history, lots of inside jokes and a habit of harassing the musicians—whom they’d also known forever—that performed at the neighborhood bar.

Little did I know that 23 years later these folks would have evolved from being acquaintances, to being friends, and by now, to being family…

And in this group was Ange.

Ange was proud of his Italian heritage, he drove a huge car (this was the 80s and we were really young—we all had used cars that were either tiny or huge!) He was funny, feisty, and never missed a night out. He was an enthusiastic heckler—that night he asked the musician halfway through the first set when the band was coming. And that musician (Jeff Elliott) always put his name into one of his songs… which he still sings…

(In the Jimmy Buffett song Pencil-Thin Moustache who do they really have an autographed picture of??? As far as I know it’s been Ange for more than 20 years!)

Ange was also the first guy to remind the motorcycle crowd when they left to go home, “Shiny side up!” He loved the Beatles and Jimmy Buffett and Lynyrd Skynyrd (mandatory generational and neighborhood favorites.) He was the music trivia king—and movies too, I think.

And, he had Cerebral Palsy.

Ange was born in 1963. He was born before inclusive education. He was born before people with ‘significant disabilities’ had hope of living in neighborhoods, driving cars, having friends who did not have disabilities, having intimate relationships, having children, etc, etc, etc.

And he did all of these things—and more.

This says tons about his family, his friends and him…

The past year, sadly, Ange battled cancer. UGH.

He died on November 10th.

At his funeral his cousin Scott said, “When Ange was born and had all his issues we knew he was going to be ‘special’ because of his disabilities. But we were wrong. Ange was special, but it had nothing to do with his disability. He was special because of the kind of man he became.”

Ange, we miss you.


Ange had a life that ANYONE would want—not a system life, not a disability life. A good life.

If all of this was possible for a man born in 1963 we have no business settling for anything less for ourselves or our children in 2008.

Can I have an Amen??

(In the picture Ange is the guy that's sitting on the bench.)

Tuesday, November 25, 2008

Surfers Healing Montauk: A Chat with Helene Fallon

Helene graduated from NY Partners in Policymaking in 2006. She is a parent of children with disabilities. Helene has a background in social work and became interested in educational programs as she pursued the programs her children needed. She now works under two grants funded by the State Education Department as a trainer providing technical assistance to families and school districts about special education and transition.

This September Helene and a team of organizations such as East End Disabilities and others hosted a Surfers Healing surf event for kids with disabilities and a very successful fundraiser.

I was in the area that weekend and I got to attend the events. I was amazed! First of all, this was my first time on Long Island. I had no idea that there was a place to surf in New York State! Secondly, this was a BIG event from beginning to end, so I talked with Helene to ask how they did it.

So Helene, how did you even get started?

Well, a couple years ago we heard about Surfers Healing and it seemed like a perfect idea for our area. We contacted the Paskowitz family who run Surfers Healing in California to see if they would consider coming here. When we found out they would, we put together a committee and got started. Long Island really needs recreational opportunities for kids with disabilities and Surfers Healing seemed like a great place to start.

We started small 2 years ago with a few surfers and our fundraiser that year and last year raised about $1000. Our committee was from all over the island and we were united by the over-arching goal of eventual sustainable recreation for kids with disabilities ‘on the island.’

This year they kicked it into full gear:

They had more than 100 volunteers (organizers, lifeguards, surfers and more.) And their fundraiser featured Jimmy Buffett—he has a house on Long Island and he and his staff are very dedicated supporters of kids with disabilities.

Despite questionable weather—overcast through the surfing, POURING through the (outdoor) fundraiser—they had 120 surfers this year and the Jimmy Buffett concert and silent auction raised more than $100,000. (I nearly drowned, but couldn’t have had a better time!)

AND!!! The first meeting to plan an ongoing swimming-sailing-kayaking program including kids with disabilities on Long Island was held in October!

Helene’s advice:

Rely on partnerships, connections, networking and teamwork. Keep relationships going by staying focused on the team’s goal.

-Don’t accept barriers. Find partners that share your vision and keep going!

-Focus on staying organized.

-Keep at it—amazing things can happen.

Friday, November 21, 2008

Guest Blogger: Author, Gary Presley

Today we have a guest post from fellow blogger (bloggist?) Gary Presley. He has published a memoir, Seven Wheelchairs: Life Beyond Polio about his experiences with disability and has been so kind as to share some thoughts with us about writing and about disability--enjoy!

Gary writes:

Let's face it. You need to polish your ego a bit if you want to write a memoir. Frankly, I didn't have much of one. I was raised as an Army brat, which means the "children seen but not heard" school of thought. Oh, of course, a child was "heard" occasionally, but it was to say "Yes, sir" or "Yes, ma'am."

But I do have a bit of ego. In fact, I sometimes display an off-beat, twisted sense of pride that I'm one of the few people you'll ever meet who has used a wheelchair for nearly 50 years. Of course, that didn't come easy. For too long, I was something of a jerk – and an angry, bitter one at that. With that mindset, it took me several years after I begin to write before I understood that there was a story worth telling about that long, seat-of-the-pants journey.

It began when I wrote an essay entitled "A Pot to Pee in," a whimsical meditation on what it means to use that little plastic bottle called a urinal. I thought it was interesting enough, especially because it begin in the bad old days before there were accessible bathrooms.

I belong to a writer's critique group, and several members read the essay and said "You need to write a book."

And so I did. I thought maybe I could offer the world an opinion or two about what we call "disability" – about it being simply another aspect of the human condition, about the need to integrate people with disabilities fully into society, about the ugliness of institutional care, and about the absurdity of the so-called right-to-die movement.

The book – called Seven Wheelchairs: A Life beyond Polio – was a multi-year project, but it was published October 2008 by The University of Iowa Press. Many readers have responded with notes that they've begun to regard disability differently because of my book.

Now here's the odd part of this saga: In writing the book, I taught myself something too – about myself and about disability.

I learned – no, really remembered and understood – how significant a sacrifice my parents made for me after I begin to live on wheels. I learned how deeply held the guilt I feel about that – not guilt imposed by my parents but rather guilt generated by my dependence. No one ever told me what every parent should tell a child with a disability: there is no blame related to disability. Disability simply "Is" – and it is only one of the qualities that makes the child a person of value, a person worth loving, a person of promise.

And what did I learn about disability? Mostly that things are better now than in the bad old days when I became a polio quad. Better access to education and employment are the two most important. On the other hand, there's one element in the "living disabled" lifestyle that still restricts full integration. That's social integration – the idea that many of us with mobility impairments and other physical and mental conditions remain isolated. Barrier-free home construction would go a long way toward fixing that problem – as would a concerted effort by people with disabilities, and their supporters, to never hesitate to move proudly and confidently out into every community activity possible.

(The picture at the top is a photo of the author, Gary Presley. The one at the bottom is a picture of the cover of his book, Seven Wheelchairs: A Life Beyond Polio.)

Update: The New York Times gave this book a rave review!!!!

Wednesday, November 19, 2008

The 2008 Election

Hi All, I have missed you! So much to catch up on….

First, did you hear that we elected a new president? Yep, it’s true. January 20th Barack Obama will be sworn in!

Did you hear his speech? This is what he said:

“If there is anyone out there who still doubts that America is a place where all things are possible; who still wonders if the dream of our founders is alive in our time; who still questions the power of our democracy, tonight is your answer.

It's the answer told by lines that stretched around schools and churches in numbers this nation has never seen; by people who waited three hours and four hours, many for the very first time in their lives, because they believed that this time must be different; that their voice could be that difference.

It's the answer spoken by young and old, rich and poor, Democrat and Republican, black, white, Hispanic, Asian, Native American, gay, straight, disabled and not disabled - Americans who sent a message to the world that we have never been a collection of Red States and Blue States: we are, and always will be, the United States of America.

It's the answer that led those who have been told for so long by so many to be cynical, and fearful, and doubtful of what we can achieve to put their hands on the arc of history and bend it once more toward the hope of a better day.

It's been a long time coming, but tonight, because of what we did on this day, in this election, at this defining moment, change has come to America….”

See that? See? Right there in front of the whole nation he mentioned people with disabilities. Our community is visible to our new president—and to the country—from the start. How cool is that?

So the question is, of course, what is this “change” going to mean for us? Truth be told, I won’t be happy with just any old change, I want IMPROVEMENT!!!!

And my other question is what are we, the disability community, going to do with all this recognition? This a huge opportunity ripe for some serious leveraging. (Remember, presence-credence-influence!)

So what do we want to gain with all this? I do have some ideas (surprise!) Let’s go for some
-Community living
-Civil rights
-Pursuit of happiness

Now I know that this is a difficult time for our country. I know that the economy and war and other issues will be obstacles.

I also know that we are a community that knows just how to handle obstacles. Obstacles are nothing new for us—we eat them for breakfast (and lunch, and dinner!)

I do believe, if we think and speak and act with intention and with each other—

Oh yes. We can.

(Picture of Barack Obama in red and blue with the word HOPE underneath.)

Sunday, November 02, 2008

Sarah Palin's Speech about "Special Needs"

Forgive me folks I am so far behind--there is an actual traffic jam of posts waiting to be written in my head... I am starting with this one because I commented a few times about the McCain-Palin Campaign's lack of a disability policy and now they have one.

A week ago Friday Sarah Palin spoke in Pittsburgh and outlined some actions that they will take regarding disability if elected. I heard that they also put their disability platform on their website, but haven't been able to find it.

I was very glad to hear Gov. Palin's remarks because to me it means that people with disabilities are being recognized as the viable minority they are. And I have been beside myself watching a national platform saying "special needs" every 3 words yet offering nothing... (I might have mentioned this before.)

Gov. Palin states they will support school vouchers/choice for children with disabilities and special education money will follow the child in states where state funds are portable. They will fully fund IDEA by re-prioritizing earmarks, strengthen the NIH for long term cures and to get better information out to parents and for early diagnosis. For teens and young adults they will extend the support of IDEA and rehab act extending to schools and colleges. Requiring results from education--freedom to work and live independently. They also want a welcoming culture.

She spoke about Special Needs Trusts and worries that Obama's tax increase will tax them. And advocated for more private-public partnerships.

Well, all that is left is whether you agree or disagree with these things. I have my concerns.

I don't agree with vouchers--private schools show very little inclination to accept kids with disabilities--the kids left in public schools will be the kids with disabilities and other needs,reversing all the benefits that inclusive education has wrought.

I worry about fully funding IDEA as an exception to their campaign's non-funding principles. In Obama's campaign disability issues are covered in the principle that everyone gets what they need. In McCain's it appears that "special needs children" will be given what other people need--this does not create a welcoming situation, it creates a scapegoat.

Further than this, if the Obama campaign intends to tax people making more than $200,000 how does this affect Special Needs Trusts at all? I don't know ANY folks who have so much in their trust that they are making >$200,000/year. None. But if they are, I say tax them!

And I know others love the phrase, but I hate the term "special needs." My husband needs a working car, 2 cell phones, a pretty impressive computer and strong coffee to be successful in what he does. My neighbor needs an electric wheelchair. Why are some things just needs and some things "special" needs???? Don't get it, don't like it. The principle exception does not work for me--it creates another "not us." Which to my way of thinking is ALWAYS dangerous.

But that's just me--go vote!