Author Gary Presley has been riding in a wheelchair since he got polio 50 years ago, and says he has nothing to complain about. Writing in the Washington Post, he says he plans to “dance through life until hell freezes over.” An excerpt:

… like other people who have evolved from being “an invalid confined to a wheelchair” to a man advocating for such important issues as MiCASSA (the Medicaid Community-Based Attendant Services and Supports Act), as I have done for the past 10 years, I cannot forget that people with disabilities are among the last awaiting full integration into society.

I am one of a group once segregated by circumstance. That’s the significance of my story: that people with disabilities have made great progress in the last generation, and even though there’s much left to do, especially in the realm of employment, things continue to change for the better.

Gary Presley is the author of “Seven Wheelchairs: A Life Beyond Polio” (University of Iowa Press).

From the BBC News Magazine:

Noel Martin, a British construction worker who was paralyzed from the neck down after being attacked by neo-Nazis near Berlin 12 years ago, says he is planning a trip to Switzerland to commit suicide. Broadcaster Liz Carr interviews Martin for a BBC report (included here), then follows up with an open letter urging him to reconsider. Carr herself has a disability and uses a wheelchair.

An excerpt:

Worn down, feeling like a burden and with their needs unmet, it’s perhaps understandable why people like yourself might choose death. But surely before we even consider assisting people to die, we need to assist them to live.

One of the main problems I have with assisted suicide stories like yours, Noel, is that the media perpetuates the idea that to be disabled or ill must be the greatest tragedy of all. Disability inevitability equals no quality of life.

…I just think it’s too easy for a society to promote assisted suicide as a right rather than work to overcome the barriers to supporting older, ill and disabled people to live fulfilled and valuable lives. Forget the right to die, isn’t it more urgent that we campaign for the right not to be killed?

(Liz Carr and Noel Martin, BBC photo)

Writing in Parenting Magazine, Connecticut writer Hallie Levine Sklar tells how she came to accept her four-month-old daughter Johanna.

She and her husband Jamie had been “ambivalent parents,” self-absorbed and career-driven. When they found out after Johanna’s birth that their baby had Down syndrome, they were sure they wouldn’t be able to handle it.

But as time went by, they fell in love with their baby and realized that they had nothing to fear — “other than outdated stereotypes.” An excerpt:

For now, we’re taking life day by day. And while my days are filled with coos and giggles, sometimes at night, after she’s asleep, I find myself searching the Internet for information about Down syndrome. What I read fills me with dread: talk of increased risk of childhood leukemia, limited job opportunities, early cognitive decline, shortened life spans. It’s at these moments that I race into Johanna’s nursery and pick her up. As I feel her body, warm, plump, and soft against mine, I realize once again that she’s not some statistic in a medical textbook. She’s my baby, our Johanna.

The story is accompanied by galleries of photos of babies with Down syndrome, submitted by readers in honor of National Down Syndrome Awareness Month.

See:

• Photo Gallery – A Special Joy: Beautiful Babies with Down Syndrome
• Photo Gallery — A Special Joy 2: More Beautiful Babies with Down Syndrome
• POLL: If Sarah Palin were a father to special-needs infant son Trig and pregnant teenage daughter Bristol, what would you think about the VP nomination?

From the New York Times, ‘Lesson Plans’ blog:

Christine Gralow, a pre-school special needs teacher in New York City, says children with disabilities and their families have an especially difficult time dealing with the city’s “culture of cut-throat competition” in kindergarten admissions. She recalls a student whose family had to move out of the city to find an appropriate kindergarten placement for their son, who is on the autism spectrum.

All this is not to say that there are no good public kindergartens in New York City, or no good public kindergarten programs for special needs children. They do exist, and some parents of special-needs kids — those enough lucky to live in one of the city’s coveted public education districts — do find good placements for their kids in well-run team-teaching classrooms, or, when appropriate, in well-run self-contained classrooms. But such placements are few and far between. Even in the coveted districts, I’ve rarely seen an appropriate special-needs kindergarten placement come without a parent struggle.

Writing in NPR’s ‘This I Believe’ section, Penn State University English Professor Gregg Rogers explores his reaction to his daughter’s prenatal diagnosis of Down syndrome. Rogers and his wife were overwhelmed by fear and anxiety at the thought of raising a child with a disability, he says, but were transformed when their daughter Genevieve burst into their lives.

I now believe Genevieve is here for everyone. I believe Genevieve is taking over the world, one heart at a time — beginning with mine. I believe that what was once our perceived damnation has now become our unexpected salvation.

… On my right wrist, I wear a simple silver chain with three little beads on it. I used to say the three beads signified the third chromosome that results in trisomy 21, Down syndrome. Now when I look at those beads, they simply remind me that I don’t ever know as much as I think I do, but I’m always capable of more than I think I am.

Rogers and his wife Lucy host a website for other families in their area who have children with Down syndrome.

From Gretchen and Dan Thibault of Shoreview, Minnesota:

September 19, 2008
Rally at the Anoka County-Blaine Airport outside Minneapolis
Ricky Thibault, age 2, with Gov. Sarah Palin.
(That’s Ricky’s mom, Gretchen Thibault, whispering in Todd Palin’s ear.)
Photo by Beth Knutson.

The Thibaults and their children waited by the runway where the candidates left the bus and headed toward the stage. They were holding signs mounted on popsicle sticks that said “Trig is perfect” and “Trig in the White House!” In Gretchen’s words:

As Governor Palin approached, she paused, crouched down, and said, “Oh … what is his name. I love him.” She asked, “Could I hold him please? Is that okay?” She was so moved by seeing Ricky. She just squeezed him. She said she was going to work for “these guys.” I thanked her. I gave her husband an article that I had written for our St. Paul Pioneer Press (“The value of these precious lives”) that was printed the day before.

Ricky has Down syndrome.

Editor’s note:

Readers, if you’d like to have your snapshots included here, please send them to patricia@patriciaebauer.com. We’re looking for shots of people with Down syndrome alongside Sen. Obama, Sen. McCain, Sen. Biden or Gov. Palin.

Please enclose the following information: Your full name and city or town; where and when the photo was taken; IDs and relationships of the people in the photo (and ages, for kids), and a few lines about the circumstances. Please also let us know where we may contact you. By sending photos, you are granting permission for their publication.

Earlier posts here, here and here.

Guest commentary:

What Kind of Advocacy

Do Americans with Disabilities Really Need?

By Paul K. Longmore

Ever since Sarah Palin’s acceptance speech, the “needs” of children with disabilities have gotten a lot of press. Palin pledged to be a “friend and advocate” for those children. News stories have reported the excitement of parents and other people in the disability rights constituency that disability issues are finally getting some attention. Some of them have decided to support the election of Palin and John McCain. But do the Republican candidates offer the kind of advocacy Americans with disabilities really need? I don’t believe they do, and I want to explain why I am voting for Barack Obama and Joe Biden instead.

(more…)