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ABE MUNDER, THE WHEELED WONDER

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August 28

STRONG DISABILITY PRESENCE AT DNC

Among the notable speakers at this week's Democratic Convention was Illinois Department of Veterans Affairs Director Tammy Duckworth.

Duckworth lost both legs in 2004 when her copter was shot down in Iraq, and only two years later waged a strong campaign for a congressional seat in Republican west suburban Chicago, losing by the slimmest margin.

She doesn't mince words, and is a clear-eyed and forceful advocate for those who serve. Look for her in the future.

Later, with the crowd still bubbling from President Clinton's eloquent address, a young woman strode to the mike:

"Good evening. I speak tonight as the wife of a United States Marine. Oorah!"

Instantly, she made that crowd her own.

She is Beth Robinson of Chesapeake, Virginia, who has multiple sclerosis. She spoke of "inadequate and underfunded" health care for military families.

"I know that President Obama will make health care available and accessible to all Americans," she said.

Then tonight, this from the nominee, on the 45th anniversary of Dr. King's speech:

America, now is not the time for small plans...

Now is the time to finally keep the promise of affordable, accessible health care for every single American. If you have health care, my plan will lower your premiums. If you don't, you'll be able to get the same kind of coverage that members of Congress give themselves.

And as someone who watched my mother argue with insurance companies while she lay in bed dying of cancer, I will make certain those companies stop discriminating against those who are sick and need care the most.

Now is the time to help families with paid sick days and better family leave, because nobody in America should have to choose between keeping their jobs and caring for a sick child or ailing parent.

August 26

ONE OF US

Ah, how nice to hear the voice of someone who understands.

Michelle Obama at the Democratic Convention:

I come here as a daughter - raised on the South Side of Chicago by a father who was a blue collar city worker, and a mother who stayed at home with my brother and me...

My Dad was our rock. Although he was diagnosed with Multiple Sclerosis in his early thirties, he was our provider, our champion, our hero. As he got sicker, it got harder for him to walk, it took him longer to get dressed in the morning. But if he was in pain, he never let on. He never stopped smiling and laughing - even while struggling to button his shirt, even while using two canes to get himself across the room to give my Mom a kiss. He just woke up a little earlier, and worked a little harder.

He and my mom poured everything they had into me and Craig. It was the greatest gift a child can receive: never doubting for a single minute that you're loved, and cherished, and have a place in this world. And thanks to their faith and hard work, we both were able to go on to college. So I know firsthand from their lives - and mine - that the American Dream endures...

I can feel my dad looking down on us, just as I've felt his presence in every grace-filled moment of my life.

August 15

FDA APPROVES FIRST HUNTINGTON'S DRUG

FDA Approves First Drug for Chorea in Huntington's Disease, MedPage Today

Disaboom Raising "Unheard Voice" of Disabled at Denver Convention, CNN

World-Class MS Information at the Touch of a Button, Medical News Today

Obituary: Bert Shepard, 87, baseball's only one-legged pitcher, LA Times

Bert Shepard: P-38 pilot, WWII POW, Washington Senators pitcher,
semi-pro manager, typewriter salesman, engineer, golfer, father, grandfather

Kansas Factory Finds Success With Blind Workers, McClatchy Washington Bureau

Thinking About The Unthinkable: characteristics of disaster survivors, Well blog
(Read this fascinating, and practical, article.)

August 04

OUT OF THE DARKNESS

I love a good story, so I have to tell you about this.

Elizabeth Goodyear loves a good story, too. The thing is, she's 101 years old and has bad knees, so she doesn't get out of her New York apartment much. And a few years ago, she lost her sight, so she can't read the books that line her walls. But this is no pity party, because Goodyear has the spark of life in her, the one that attracts people like moths to a flame (you know what I mean). No, Elizabeth Goodyear lives at the center of something very good.

Put simply, people come to read to her. Many people, of all ages and backgrounds. A yoga instructor, a realtor, a nurse and others. All volunteers, not affiliated with any organization, though most now since go by the title of "friend" -- one who has moved away, for instance, calls Goodyear every week to read over the phone. At any one time, she'll have several different books ongoing.


(Credit: Josh Haner, New York Times)

It just kind of sprang up, this reading circle of friends. A neighbor named Alison West, who is two generations younger than Goodyear, began checking in as Goodyear grew frail, "to kiss her goodnight each evening." The two had done favors for each other before, and now West learned Goodyear was having difficulty affording rent and wages for her home health aide. West held a fundraiser to meet the immediate needs, and also sent out a message about this woman who loves lively conversation and a daily chocolate, a woman who has led a brimming-full life.

It's true, Elizabeth Goodyear's life would be the envy of most of us. Born in a Philadelphia suburb during the Teddy Roosevelt administration, she migrated to New York City as a young woman, lured by the bright lights of Broadway. She studied at the American Academy of Dramatic Arts, and worked in "the business" (as actors call it), mostly behind-the-scenes, throughout her life. That includes 20 plays she wrote or cowrote, two of which made the stage. Along the way, she rubbed elbows with Duke Ellington, Gypsy Rose Lee, George Balanchine, and Martha Graham, who caught her attending one of her classes while hung-over, and gave her the workout of a lifetime!

[See a story slideshow, narrated by Elizabeth Goodyear.]

One of my favorite aspects of this story is that West particularly, but also the others, recognized the wonderful person in their midst. They see Elizabeth, not an Old Woman. They see through generational lines. Perhaps that sounds like no big deal, but I'm not sure how many people can actually do this. I see some smirk or curse the old man in a hat who drives so slow and straight, and it makes me cringe because there's a good chance that guy was at Normandy or Inchon doing things that the plump softies of my generation can only imagine through video games.

In return for their insight, these friends are enriched by Goodyear, a one-of-a-kind personality who is obviously making an impact on many lives.

West's message was the beginning of Goodyear's salon. That's what it is, a salon. People drop in daily, some without books but instead with pets, gifts from abroad, ideas to discuss, and always, dark chocolate.

Goodyear says, modestly, "Usually there's something going on here. It's strange. You'd think if you got to be 101, nothing much would happen. But it does."

"I don't know how I ever managed to do it," Ms. Goodyear said of her numerous relationships.

"You hook them in," Ms. Sandleben teased.

"They come," Ms. Goodyear responded, "and for some reason, they always come back."

[Source: In Strangers, a Blind Centenarian Finds a Literary Lifeline by Sarah Kramer, New York Times, August 1, 2008.]


Postscript: I think I just went through a tornado. An hour ago, in the middle of writing this. Everything A-OK. Wow.

July 30

THE PATH THAT'S TRUE

While researching another story, I stumbled upon this news. Disability activist, lawyer and writer Harriet McBryde Johnson passed away in June at age 50.

Johnson wrote a pair of prominent articles for the New York Times a few years ago; plus a memoir, Too Late To Die Young; and a young-adult novel called Accidents of Nature. The one that really made an impact on me was Unspeakable Conversations, when she faced off with Princeton bioethicist Peter Singer, who is infamous for arguing for the euthanization of babies born with birth defects.

There, the depth of her intellect and her principles were apparent. Yet there was no grandstanding, none of the shrill diatribes or sheltered truisms we've come to expect when this kind of explosive issue is discussed. She didn't need that to stand her ground.

Instead, her observations were clear-eyed and nuanced. The details that stuck with me weren't searing debate points or sarcastic remarks, but how genial she found Singer to be (remember, he is also a prominent spokesman for animal rights). Her depiction differed so with my expectations, that as I followed their conversation I felt the hairs raise on my neck. Killer and Killed facing one another across a desk, one step away from Fellini.

Her strength of vision made me feel like a mere dabbler. Reading the tributes of others, I find that I'm not alone in this regard.

While her work should be emulated, it was Johnson's attitude that taught me something. McBride was afflicted by a form of muscular dystrophy. Her body sat small and hunched in her wheelchair, shaped by the years with her lifelong condition. She was probably a peculiar sight to most eyes.


Harriet McBryde Johnson

Her appearance was something she addressed forthrightly when introducing herself to us in her articles. She didn't gloss over, but detailed her physique to us. She framed her image matter-of-factly and boldly in our (her readers) minds ... because this is me. She was comfortable with her body, even liked her body, and was confident within it ... because this is me.

This is me, as I am. Can you, Peter Singer or anybody else, deny my humanity? Can you declare me any less human than you? You cannot, because I won't let you ... because this is me.

That, to me, is a powerful realization. It underscored to me something that I already knew, that we all know -- only in Harriet's case it was brought out in stark relief. That we are all individuals. We make our own ways, with a billion different paths. Harriet went one way. Oscar Pistorius, the Blade Runner, and Josh George, the wheelchair racer, go in different ways.

Me, with my slowly changing body, I've got to go along another. It's a challenge, but it's mine, and it's all good.


A Harriet McBryde Johnson Reader --

A New Mobility blog notice of her passing

Unspeakable Conversations, New York Times, February 16, 2003

The Disability Gulag, New York Times, November 23, 2003

Too Late To Die Young: Nearly True Tales From a Life

A fun piece in Ouch! a few weeks before she died

Articles and remembrances of Harriet McBryde Johnson

Scroll to the bottom for a list of Harriet McBryde Johnson's online works to read

 

Fight the Good Fight

Soar above limits -- give to SKYDIVING FOR MS 12, June 2009

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