Author: stevekuusisto

“No one ever told me that grief felt so much like fear.”

–C.S. Lewis

My guide dog Nira has cancer, or “had it”. She underwent surgery this morning and along with the known tumor the vet found another. I don’t know if they got all of it. So grief and fear are driven by not knowing. In turn I add up the things I know. This is one of the tricks of poetry. Another trick of poetry is waiting. The elements of attention will fascinate us again.

Nira had a mast cell tumor and a second unidentified thing which may or may not be cancer. The trick is waiting. May her luck be excellent. I’m doing my best to be her poet. The lab results should be back in a few days.

Posted with Blogsy

(Seattle Weekly)
July 19, 2013

SEATTLE, WASHINGTON– [Excerpt provided by Inclusion Daily Express] It’s 5:45 on a Friday afternoon, and members of the Autistic Self Advocacy Network’s Washington chapter are gathering cross-legged in a basement hallway on the University of Washington campus.

Normally they would hold their monthly meeting inside the campus’ Disability Center, outside whose door they are now sprawled. But a keycard isn’t working and the maintenance staff has started the weekend, leaving the members to digest the biggest week of their group’s existence on the linoleum floors of Mary Gates Hall.

The previous Friday, Seattle Children’s Hospital had agreed, at the group’s urging, to pull a bus ad that called for “wiping out” autism (along with cancer and diabetes). ASAN’s argument: “Wipe out autism, wipe out us.”

The ad’s removal was a huge victory, but perhaps more important was the press the episode received, as Seattle reporters bombarded the chapter with interview requests, all curious about what could be America’s next big equal-rights campaign: the right to be autistic. After years of strategizing on how to get Seattle to accept autism — the developmental disability that now affects an estimated one in 88 children in the U.S. — the group’s message was going mainstream.

Entire article:
Who Should Define Autism?
http://tinyurl.com/ide0719136

(Washington Post)
July 19, 2013

FREDERICK, MARYLAND– [Excerpt provided by Inclusion Daily Express] Moments before off-duty Frederick County sheriff’s deputies tried to force a young man with Down syndrome out of a movie theater — a move that eventually led to his death — Robert Ethan Saylor’s 18-year-old aide warned them that he would “freak out” if they touched him.

“Next thing I know, there are I think three or four cops holding Ethan, trying to put him in handcuffs,” the aide told authorities, according to documents from the Frederick County Sheriff’s Department obtained Monday by the Associated Press. “I heard Ethan screaming, saying ‘ouch,’ ‘don’t touch me,’ ‘get off’ and crying. Next thing I hear is nothing.”

The aide’s statement about what happened the day Saylor died is among a package of documents released to the Saylor family’s attorney and the Associated Press by the sheriff’s department detailing its criminal investigation. The 98-page incident report and handwritten statements from 22 witnesses provide the most detailed account yet of how Saylor, 26, went from wanting to watch a movie he liked twice to dead from asphyxiation within minutes.

“I don’t understand why it has taken this long to produce,” Joseph Espo, an attorney for the family, said of the report Monday night. “We’re happy that we finally have it.”

Entire article:
Aide to man with Down syndrome who died in theater had warned police, report says
http://tinyurl.com/ide0719133

(New York Times)
July 19, 2013

NEW YORK, NEW YORK– [Excerpt provided by Inclusion Daily Express] There was a painful moment on Capitol Hill in December when former Senator Bob Dole, seated in a wheelchair, was greeted warmly by old Republican colleagues but then rebuffed by some of those very same members after he had urged Senate ratification of a United Nations treaty defending the rights of people with disabilities.

The treaty drew a 61-to-38 vote that fell five votes short of the needed two-thirds majority after skittish Republicans bought into a nonsensical attack by right-wing critics that it would undermine national sovereignty.

Senator Robert Menendez, a New Jersey Democrat and the chairman of the Senate Foreign Relations Committee, is now negotiating with the ranking committee Republican, Bob Corker of Tennessee, to arrange another vote.

Should Mr. Corker agree, it is essential that Senate Democrats vote as one to approve the treaty and that Republicans rise above the hackneyed politicking that undermined the vote last year.

With the social-issue pandering of the 2012 campaign behind us, the treaty can be seen for what it is: a singular opportunity to apply the principles of the highly effective Americans With Disabilities Act to the world at large.

Entire editorial:
A Second Chance for the World’s Disabled
http://tinyurl.com/ide0719131

Now they are calling us in, the old ones. They wrote the great symphonies; bound the Lindisfarne Gospel. The willow leaves are out for rain. 

It’s time for the children to come in. The summer flags are pointing west. The coming storm has no heart. 

A fritillary dances in circles beside the horses’ graves. 

In the apple orchard it is already dark,

though down by the road the last stem of day flares.

I walk the dogs in the Janus-faced shadows.

The moon rises from mankind’s doubts. 

You can live with sorrow 

If you walk with your face open and your hair light. 

When your guide dog is sick your heart stops and you have to talk softly to both your heart and your dog. I feel a heavy frost though its summer. I know in rational terms that a mast cell tumor on her belly is probably not going to kill her–but we won’t know whether the tumor has progressed into her lymph system or what kind of tumor it is until after the surgery which will be on Monday. Meanwhile I go from room to room rubbing my eyes. I love my girl Nira so much. She’s also the half sister of my first guide dog Corky. We’re a team–a heart team. I’m frightened. 

Sometimes all the particles of the human body shout together. “I don’t believe it,” cry the particles. “I don’t believe in unfairness!” And the mind, that inveterate slow mill, tries to sound like the autocrat at the breakfast table: “You kids stop arguing! Life is hard. Eat your porridge!” The scattered and sensate body parts cry out how unfair the mind is. Everyone sulks. Meanwhile your beloved dog goes on wagging her tail and looking at you with her deep admiring eyes and pretty face because she knows you’re a worthy part of her pack and heart. 

I’ve lost two guide dogs and many beloved pets. I’m tired of losing, you fates, do you hear? But the fates don’t hear a thing.

Like my autistic friend’s hand–soft move

Of clouds, stars appear and disappear. 

No exact words for this,

Waving in the dark…

–for D.J. Savarese 

It is easy to imagine agreement across the aisle is no longer possible and I’m not optimistic about the future of legislative negotiation but today’s Senate vote to bring the confirmation of Tom Perez as Labor Secretary to the floor tomorrow was a start. See the American Association of People with Disabilities site for more detail.

Posted with Blogsy

(Atlanta Journal Constitution)
July 15, 2013

ATLANTA, GEORGIA– [Excerpt provided by Inclusion daily Express] A Fulton County judge on Monday granted condemned inmate Warren Hill a temporary stay of execution to give her more time to consider a new state law that shields the identities of those who make and supply Georgia’s lethal-injection drugs.

Superior Court Judge Gail Tusan issued the stay — the third Hill has been granted over the past year — just four hours before his execution was to be carried out at 7 p.m.

“For the court and the public, it is a big issue,” Tusan said of the state’s capital punishment procedure. She scheduled another hearing for Thursday after state attorneys told her the warrant that orders Hill’s execution expires on Saturday at noon.

Hill’s case has attracted international attention because three state experts who previously testified Hill was faking mental retardation have come forward over the past year to say they were mistaken. They said an improved understanding of mental disabilities has led them to believe Hill is mildly mentally retarded, which would make him ineligible for execution.

Hill recently asked the U.S. Supreme Court to consider his mental retardation claims, but it was Tusan who stepped in on Monday and granted him at least a temporary reprieve. The high court’s justices had said they would consider Hill’s petition in September, and it remains unclear what action they will take if Hill’s execution is rescheduled before then.

Entire article:
Fulton judge stays Warren Hill’s execution
http://tinyurl.com/ide0715131a
Related:
Disability advocates fight for change in death penalty law as Hill execution approaches (Athens Banner-Herald)
http://tinyurl.com/ide0715131c
Statement on Georgia Prisoner Warren Hill’s Scheduled Execution (American Civil Liberties Union)
http://tinyurl.com/ide0715131b
The Death Penalty and Mental Retardation (Inclusion Daily Express Archives)
http://www.inclusiondaily.com/news/laws/deathpenalty.htm