Author: stevekuusisto
See "Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children"
Disability Rights and Education in the Election Season
The latest report from the Department of Education on disability rights enforcement and guarantees is out and can be read in an accessible pdf at:
http://www2.ed.gov/documents/news/section-504.pdf
In this election season it’s useful to remember the infamous moment during the primaries when Texas governor Rick Perry announced that if he became president “three departments of government would be gone of the first day”. Of course everyone remembers that he couldn’t remember the three he was planning to eliminate, a gaffe that ruined his campaign, but how many remember that “Education” was a department he did remember? My point (such as it is) is that MItt Romney if elected will pick up that cudgel despite his declaration during Wednesday’s debate that he cares about education and about children with disabilities. Don’t you believe it!
“What Are You? Some Kind of Dog?"
“Oh, it’s a service dog,” says the airline woman, clearly flustered, uncertain, even a wee bit panicked. It’s possible she’s never seen a working dog. It’s also possible that disability and political correctness and unfamiliarity have collided in her head.
It’s early and I’m at O’Hare airport in Chicago, catching a flight to New York. My noble guide dog is at my side, though she’s not as noble as she should be because she’s sniffing a stranger’s suitcase. I pull her gently to a heeling position. The airline lady has disappeared. Poof! This is like old Scandinavian magic–someone put a spell on her and she’s vanished to the underworld. Well alright, I put a spell on her. Or “we” did–me and guide dog Nira, a seemingly innocuous yellow Labrador Retriever from Guiding Eyes for the Blind in New York. We have the power to make people go away. Right now she’s in the back room asking a supervisor what to do. Do we have to take the dog away from the man? Do we charge extra for a service dog? Does the dog get crated like cargo? Does it get a seat in the cabin? Can the man sit anywhere or does he get a special seat? Nira and I know all the questions that are now being asked behind the curtain.
**
The sensational creature next to me is known in English as a “guide dog” and sometimes she’s called a “Seeing-Eye” dog since the first school in the United States to train dogs for the blind is “The Seeing-Eye” in Morristown, New Jersey. Now there are a dozen guide dog schools in the US and more than 80 around the world, and their ranks are growing.
The technical name is guide dog.
What does a guide dog do?
Why is the appearance of a guide dog in public still so surprising?
I ponder these things in the United Airlines ticket area while loudspeakers broadcast phrases like: “unattended luggage”; “liquids, gels, and creams”.
**
When the woman returns she’s all smiles. Her supervisor has assured her guide dogs fly on airplanes, that they lie at the feet of their human partners, and that no charge will be applied for the dog. Perhaps the supervisor also said it’s a good thing if you give the guide dog team a bulkhead seat–though this isn’t required. The only thing the law really says is that people with disabilities can’t sit in the exit row.
One thing’s for sure: guide dogs are still relatively unfamiliar to the public, even some 80 years after their introduction in the United States. People know they exist, but they don’t know what these dogs and their people can do.
12 Years
I haven’t been sleeping well, my mind full of tasks I have to remember, conversations I want to forget, the excitement of newly developing adventures.
Last night, lying awake as Zac slept next to me, I breathed deeply, tried to quiet my mind enough to sleep. Instead, I thought about my friend Gracie, who would have turned 19 last weekend if she hadn’t been killed in an overturning SUV. I thought about my friend Dan, murdered on an ordinary Saturday. I thought about my Dad, how having a child late in life meant leaving me sooner than I would have liked. I thought about the ring he and my step-mother bought me when I graduated from college—a square garnet, my birth stone, surrounded by cut diamonds. I don’t often wear it, but right now, I want to wear it constantly, somehow cull strength from its presence on my hand.
I thought about how this week, I will celebrate 12 years with Zac, an anniversary I never imagined I would celebrate. Throughout my childhood, I imagined a life filled with friends and pets, with traveling, with overflowing bookshelves. I would wrap my white woven blanket around my head and pretend I had long, straight hair I could swirl around my shoulders—not that I was getting married. I spent hours alone in my room arranging stuffed animals on my bed and teaching them how to read. Even through college, I imagined sharing a big home with dear friends, of retiring together in some lovely beach location. I never dreamed I would find a partner willing to put up with me.
And yet, for 12 years, I have found a partner willing to put up with me. 12 years ago this week, Zac and I had our first date watching the presidential debates (Gore versus Bush) on the television in my apartment. I remember making Zac tea—he had a cough—and I remember my cat Orion, who was terrified of everyone, walked right up to Zac and demanded petting. I remember sitting on my living room table instead of the couch—but I can’t remember why. It was the perfect first date for the way our relationship has unfolded—politically inclined, thoughtful, full of lively (and lengthy) discussions.
12 years ago this week, a man lovelier than I could have imagined, a man I wouldn’t have dreamed of imagining, walked through the front door of my apartment. So even when I lie awake thinking about heartbreaks, all the things I wish were different, I also think about the many reasons I have to be grateful, the many people who fill my life with love. I lie awake thinking about Zac—for 12 years, the very best thing to have happened to me.
Graphein
This morning I am in Estonia, in memory, Tallinn in winter. Because I am still young when I think on it, I am young and more than a little foolish.
I held a seashell to my ear in the cocktail lounge, pretended I was confiding to the police–recited a poem by the Finnish poet Pentti Saarikoski.
I spread old tales of war across two tables I said, with the satisfaction of knowing I meant it.
I meant that war is always a narrative at first, then a calamity. I meant that brutal stories had been told, were being told, were written on the monolith hotel in graffiti.
7 AM and Still Have a Disability
Yup. Still can’t see the future. Still feel like a refugee from a forgotten battle. I’ll bet you do too. We know who we are, don’t we?
Meanwhile we clean the mortal house. And owing to visual impairment, we can’t see the dead tree standing in the yard. Therefore, I cannot feel like a swindled naturalist.
You see?
Beautiful video of folksinger Elizabeth Cotten, interviewed late in her life. Poignant and deeply rewarding to watch.
The Morning Coffee Bioethics Blues
It’s early and this promises to be a long day. I have to fly to New York tonight where I’ll be speaking in the morning to high school guidance counselors about the honors program I direct at Syracuse University. It’s early though. I can still pack, walk my dogs, finish some business. The mind enjoys its small compensations.
The mind likes coffee. The mind does not like contemporary bioethicists who subborn people with disabilities into categories of further abjection. Peter Singer and his posse.
If you parse the thinking of the Singerites down to its minimalist acorn their thinking is that medicine is aimed at curing people, not assuring people the most dignified and diverse lives possible. Why am i thinking about this? It’s early and this promises to be a long day. I will likely be treated poorly by New York City taxi drivers, maybe airline personnel. My disability marks me as a sub-caste and there’s no getting around it. And American academics hold the same prejudices. The mind likes coffee.
Last night I was explaining to my stepson how metaphorical thinking contributes to human manners of inequality. I told him that we think imagination is a terrific moral force, but in fact it’s equally primitive and awful–a thought he hadn’t quite allowed himself. My point was that symbolic thinking will kill us if we don’t master it. Just call me Ernst Cassirer.
The utilitarian idea that good lives are those that are flawless, or can be made so is tied to the industrial revolution–good lives are lives that can be devoted to the factories.
The mind likes coffee.
Clearly I haven’t had enough this morning.
Of Peter Singer:
“In an interview with The Independent newspaper in England, Singer said he would definitely kill a disabled newborn baby.
He indicated he would do so “if that was in the best interests of the baby and of the family as a whole.”
http://www.lifenews.com/2006/09/12/bio-1766/
Advocacy Groups Push For 'Strong, Unequivocal' Legal Guidance On Organ Transplants
(Babble.com)
October 1, 2012
WASHINGTON, DC– [Excerpt provided by Inclusion Daily Express] In response to two major stories involving people with disabilities being denied organ transplants, in part due to their disabilities, a national coalition of fourteen different advocacy groups is pushing for change.
The National Disability Leadership Alliance met with senior staff at the U.S. Department of Health and Human Services, Division of Transplantation, to urge HHS to issue legal guidance to transplant facilities regarding their responsibilities under the Americans with Disabilities Act.
The National Disability Leadership Alliance (NDLA) is comprised of fourteen advocacy organizations that are run by and for people with disabilities At the meeting, NDLA was represented by Ari Ne’eman, president of Autistic Self-Advocacy Network; Kelly Buckland, Executive Director of the National Council on Independent Living; and Diane Coleman, president of Not Dead Yet. The group discussed organ procurement and transplantation policies, and how they impact people with disabilities of all kinds.
Among the issues discussed were ensuring meaningful consent in organ procurement efforts and addressing discrimination against people with disabilities in accessing organ transplants. NDLA’s representatives raised the recent cases of Amelia Rivera and Paul Corby, individuals with developmental disabilities denied access to transplant waiting lists, and urged HHS to issue “strong and unequivocal legal guidance to prevent such acts of discrimination,” according to ASAN’s website.
Entire article:
Disability Advocacy Groups Push for ‘Strong, Unequivocal’ Legal Guidance on Organ Transplants
http://tinyurl.com/ide1001123