By Ben Mattlin, author of the memoir “Miracle Boy Grows Up”

In midsummer, I learned of the death of Laurie Hoirup, a prominent 60-year-old disability rights advocate in California. Laurie drowned in the Sacramento River after a July 4 celebration. She was well-loved and accomplished. She’d served as a chief deputy director of the State Council on Developmental Disabilities for five years and wrote books about living with a disability.

Laurie’s sudden and tragic death was not directly caused by her S.M.A., but it is a stark reminder of the vulnerability of disabled lives. She was deboarding a pleasure boat when the ramp to the dock shifted. The weight of her motorized wheelchair — and the fact that she was strapped into it — pulled her down into the water too rapidly for rescue.

Laurie’s death had extra significance for me, a 53-year-old husband and father of two, in part because we shared a diagnosis: spinal muscular atrophy.

S.M.A. is a congenital and progressive neuromuscular weakness akin to muscular dystrophy. Until recently, half the babies born with it would die before their second birthdays. Their hearts and lungs became too weak to continue. Medical care and understanding have improved the odds somewhat. (more…)

By Matt Flegenheimer and Amy Chozicksept, New York Times – September 21, 2016

ORLANDO, Fla. — Of all the attacks that Hillary Clinton and her fellow Democrats have tried against Donald J. Trump since he captured the Republican presidential nomination, one has stood out for its emotional force and persuasive power: No one, it seems, can abide Mr. Trump’s mockery last year of a reporter’s physical disability.

And as Mrs. Clinton strains to make a more affirmative case for her own candidacy, after a summer focused largely on hammering Mr. Trump, her campaign believes that a focus on an often-overlooked constituency — voters with disabilities — can accomplish both goals at once.

On Wednesday, without mentioning the Trump episode, Mrs. Clinton discussed her vision for an “inclusive economy” with expanded job opportunities for what she called “a group of Americans who are, too often, invisible, overlooked and undervalued — who have so much to offer, but are given far too few chances to prove it. (more…)

By Susan Campbell, Contact Reporter, Hartford Courant

When he was a kid, Nick Glomb watched his mother prepare food for the family in her kitchen. He knew enough to stay out of the way — this was his mother’s kitchen, after all — but it was inspiring in the way his mother made so much from scratch, and her preparations planted a seed.

Now Glomb is putting his dream into action. He wants to open a hot dog stand, using only the best ingredients, and he has a GoFundMe account to help him raise the cash. Right now, he’s at just over $6,500, a few thousand short of his $10,000 goal.

He has a name for the cart already, Family and Friends Roadside Cart.

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By Rosemarie Garland-Thomson, New York Times – August 19, 2016

Not long ago, a good friend of mine said something revealing to me: “I don’t think of you as disabled,” she confessed.

I knew exactly what she meant; I didn’t think of myself as disabled until a few decades ago, either, even though my two arms have been pretty significantly asymmetrical and different from most everybody else’s my whole life.

My friend’s comment was meant as a compliment, but followed a familiar logic — one that African-Americans have noted when their well-meaning white friends have tried to erase the complications of racial identity by saying, “I don’t think of you as black,” or when a man compliments a woman by saying that he thinks of her as “just one of the guys.”

This impulse to rescue people with disabilities from a discredited identity, while usually well meaning, is decidedly at odds with the various pride movements we’ve come to know in recent decades. Slogans like “Black Is Beautiful” and “We’re Here, We’re Queer, Get Used to It!” became transformative taunts for generations of people schooled in the self-loathing of racism, sexism and heterosexism. Pride movements were the psycho-emotional equivalents of the anti-discrimination and desegregation laws that asserted the rights of full citizenship to women, gay people, racial minorities and other groups. More recently, the Black Lives Matter and the L.G.B.T. rights movement have also taken hold. (more…)

Thanks to the initiative of Self-Advocates at Favarh, HB 5050 – An Act Concerning the Modernization of Parking Spaces for People with Disabilities, passed both the House and the Senate today and awaits the expected signature from the Governor. With that, Connecticut becomes the second state in the country to both remove the word “handicapped” from parking signs and to change the static wheelchair to a more active, independent, and modern icon.

The measure is a ZERO COST bill which means the new signs will only be installed when existing signs need replacing and with new construction. (more…)

Restraint: “Life-threatening physical restraint” means any physical restraint or hold of a person that restricts the flow of air into a person’s lungs, whether by chest compression or any other means. “Physical restraint” means any mechanical or personal restriction that immobilizes or reduces the free movement of a person’s arms, legs or head.

Seclusion: The confinement of a person in a room, whether alone or with staff supervision, in a manner that prevents the person from leaving.

With the passage of Public Act 15-141 (SB 927) the Connecticut General Assembly has made major revisions to the State laws that govern the use of restraint and seclusion in schools.

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