Author: stevekuusisto

(Reuters)

November 9, 2012

NEW YORK, NEW YORK– [Excerpt provided by Inclusion Daily Express]A Manhattan federal judge has certified a class action brought by disability rights advocates who claim the city fails to accommodate the disabled during disasters such as superstorm Sandy.

In an order filed Tuesday, U.S. Judge Jesse Furman found that the plaintiffs, which include the Brooklyn Center for Independence of the Disabled and two disabled New Yorkers, Tania Morales and Gregory Bell, had demonstrated that the litigation should proceed on behalf of the estimated 900,000 disabled people who live in the city.

The lawsuit, filed last year in the wake of Hurricane Irene, alleges the city has violated local and federal anti-discrimination laws by failing to make sure that emergency plans, shelters and transportation fully cater to individuals with physical disabilities.

Lawyers for the class said Sandy, which prompted city officials to order mass evacuations last week and resulted in prolonged power outages that left people stranded at home, put their claims in stark relief.

Entire article:

Judge grants class action to disabled suing NYC

http://tinyurl.com/ide1109123a

Related:

Suit May Go On in Disaster Plan for the Disabled (New York Times)

http://tinyurl.com/ide1109123b

Posted with Blogsy

From my friend and colleague Wendy Harbour:

An interesting situation is evolving in California.  Just to be clear, colleges are NOT able to claim financial hardship in providing disability services – meaning they can NEVER say services are too expensive, or cut services for financial reasons.  Even if a disability services office can’t afford it, the college can.  I like to say that campuses would have to be cutting out the athletics department before they could cut disability services for financial reasons.

Now the situation may be changing in California because many campuses are unable to meet their budgets for anything (including athletics).  But it’s complicated because the campuses have been relying on state funding to support disability services, instead of seeing it as part of the cost of doing business.  There was some talk at the 2012 national AHEAD conference about whether some California campuses may actually be able to claim hardship, but I am doubtful.  There have been no legal challenges one way or another, as far as I know.

Here’s one campus where this is all playing out – thought I would pass this along because it may be a sign of things to come, but also because they turned to a charity model, fundraising to keep services.  I hate seeing things go backward….

http://kiem-tv.com/node/4166

The following two articles (excerpted by Inclusion Daily Express) actually appear paratactically on Inclusion Daily’s latest news feed. I shall have more to say about these pieces “on the other side” as they say on TV…

Not Dead Yet Challenges Bioethicist On Assisted Suicide Bill
(Not Dead Yet)
November 2, 2012

ROCHESTER, NEW YORK– [Excerpt] Art Caplan has an opinion piece that came out yesterday — and it’s linked from just about every conceivable place on NBC and MSNBC. It’s an endorsement of the proposed legalization of assisted suicide on the ballot in Massachusetts. While disappointing, it’s not that big a surprise; Caplan has been sliding toward this unqualified endorsement of legalized assisted suicide for several years.

And, while he’s ended up on the same side as disability activists in some instances, he’s never given us more than a casual mention, at least in anything I’ve read. I know he reads this blog occasionally, so he gets information on disability rights activism and advocacy from here when he does stop by.

The organizations pushing legalization of assisted suicide are sophisticated and well-funded. And, like many advocacy organizations, they are following an incrementalist strategy in terms of their policy goals. Through polling, focus groups and experience, they’ve developed a vocabulary about these topics that draws a favorable response from the public. And, for the moment, the more “respectable” groups are sticking to policy that is allegedly limited to people who are “terminally ill.”

But the signs of more expansive “advocacy” are already in evidence.

Entire article:
Bioethicist Endorses Mass. Assisted Suicide Bill in a Sloppy and Intellectually Lazy Essay 
http://tinyurl.com/ide1102125

Lieber: Lawsuit Affects Medicare Coverage
(Fresno Bee)
November 2, 2012

FRESNO, CALIFORNIA– [Excerpt] Should the federal government cover the costs of many kinds of treatments for patients who aren’t going to get any better?

It didn’t, for many years. But after the settlement of a landmark class-action lawsuit last week, Medicare soon will begin paying more often for physical, occupational and other therapies for large numbers of people with certain disabilities and chronic conditions like Alzheimer’s disease, multiple sclerosis and Parkinson’s disease.

The two questions patient advocates were left with were just how many people may benefit from the clarification of the regulations and how quickly.

The settlement, if approved by a federal judge, would end a lawsuit that accused Medicare of allowing the contractors who process its claims to use an “improvement standard” over the last few decades. To the Center for Medicare Advocacy and the many other organizations that joined the suit, that standard seemed to call for cutting off physical, occupational and speech therapy and some inpatient skilled nursing for many people who had reached a plateau in their treatment.

Entire article:
Lieber: Lawsuit affects health coverage
http://tinyurl.com/ide1102126

**

I am not a bioethicist. My graduate school training (such as it was) was in literature. Worse, it was in literary writing. I can tell you where the anapests jangle or how the pathetic fallacy undermines a decent stanza but I can’t tell you with any reasonable certainty what makes a good life any good, nor can I tell you much about the nature of suffering. Poetry frames these subjects but leaves determinations to its readers, at least for the most part. This is because art is about ideas–about representations of reality–and not reality itself. There’s freedom in this: symbols are more flexible, more malleable than people. Love in a poem beats real love because its about the heroics of the heart that lives many fathoms down. But I am not a bioethicist. It is hard enough to be called a poet. And in general all rhetorical elevations are misrepresentations. 

But suppose I was a bioethicist? Presumably (because I’m calling the shots) I’d have a sprig   of irony left over from my poetry days. Let’s say so. As a result I believe I’d daily recognize three things about my occupation:

One: there are no bioethicists in nature. (Just like poets). 

Two: (To paraphrase Heidegger): the exertion of thought seems to meet its greatest  resistance in defining the thingness of a thing. (Just like poets).

Three: We should avoid attaching undue value to intermediate positions–life before birth, life after death, life that requires the insertion of machines or anything that introduces equipment into our appreciation of the human. 

Number three may be the hardest thing for bioethicists like Art Caplan to entertain. Since the industrial revolution all human life has been valued and granted utility in terms of its relation to technology. Children were valued in the first wave of industrialization because their limited stature made them more efficient working in the overcrowded mechanical looms. By the second wave of the industrial revolution higher standards of strength and endurance became valuable and children were sent to school. Any intellectual failure to understand the algebra of industrial utility and human value is to my mind a failure of ethics. 

Art Caplan believes the pending vote in Massachusetts that may authorize the introduction of physician assisted suicide in the Bay State shouldn’t concern disability rights advocates who argue that people with disabilities may subsequently be at greater risk for euthanasia. Caplan fails to recognize that the machinery of medicine carries costs that are often far greater than medicine’s rudimentary code of ethics can withstand. People with disabilities have every reason to be afraid. 

The dog is in no hurry to be different

Wakes to parts of yesterday

So the day is memory’s dream

Wind tosses leaves wherever he goes  

By Andrea Scarpino

It’s not difficult to analyze this dream: my father has been kidnapped, and I’m trying to rescue him from his kidnappers. I finally track them down, two men dressed in oversized sweatshirts like frat boys, holding my father captive in the corner of a restaurant. They decide to return him to me because they think he is dead, slumped over on a square wood table. I know better, although he has become very sick and old in his captivity, and has shrunk to the size of a 10-year-old. He opens one eye to look at me, to confirm he’s not really dead. 

I leave with him on my back, holding his arms over my shoulders, half carrying him, half dragging him away from the restaurant onto a bus where I know his kidnappers won’t be able to follow us. Sitting on the bus seat where I’ve managed to set him down, my father finally speaks to me. I can’t remember what he says.

I remembered this dream in yoga while squeezing my body into twisted chair pose, a pose that’s incredibly challenging because I don’t have flexibility in my Achilles tendons—surgery, scar tissue. I twisted and tried to breathe, and I suddenly remembered carrying my sick father away from a certain death. I remembered saving him, his body on my back. 

Which makes a certain kind of sense: in twisted chair, I focus on my Achilles tendons, imagine lengthening them so I can sit even a third as deeply as everyone else seems to be able to sit. And when I think of my Achilles, I often think of my father, how he would hold my feet in his hands, moving and stretching them, how he would ask about my scars on the phone, how he took me to doctor after doctor throughout my childhood to make sure I was walking properly.

On first remembering, twisting my body awkwardly, trying to breathe, I read my dream as wanting so badly to save my father from death, to carry him away from death’s kidnapping. 

But now I also see it as a reminder not to forget him, to carry him with me. In my dream, he was much smaller than he was in real life, hardly weighed anything at all. And he winked at me. Making sure I knew he was okay. 

Ben Mattlin: Suicide By Choice? Not So Fast
(New York Times)
October 31, 2012

LOS ANGELES, CALIFORNIA– [Excerpt provided by Inclusion Daily Express] Next week, voters in Massachusetts will decide whether to adopt an assisted-suicide law. As a good pro-choice liberal, I ought to support the effort. But as a lifelong disabled person, I cannot.

There are solid arguments in favor. No one will be coerced into taking a poison pill, supporters insist. The “right to die” will apply only to those with six months to live or less. Doctors will take into account the possibility of depression. There is no slippery slope.

Fair enough, but I remain skeptical. There’s been scant evidence of abuse so far in Oregon, Washington and Montana, the three states where physician-assisted death is already legal, but abuse — whether spousal, child or elder — is notoriously underreported, and evidence is difficult to come by. What’s more, Massachusetts registered nearly 20,000 cases of elder abuse in 2010 alone.

My problem, ultimately, is this: I’ve lived so close to death for so long that I know how thin and porous the border between coercion and free choice is, how easy it is for someone to inadvertently influence you to feel devalued and hopeless — to pressure you ever so slightly but decidedly into being “reasonable,” to unburdening others, to “letting go.”

Entire article:
Suicide by Choice? Not So Fast
http://tinyurl.com/ide1031126

I spread the papyrus across my table and see four words. I know the fifth must be conjectural. 

Today I am the strongest man in the kingdom. Strength is a proposition. 

So many clouds of dust are behind these words. 

Although it has no name we call it sorrow. This morning sorrow was at the windows and high in the branches. Sorrow was in the branches tipping like a basket, a remnant from a storm. It’s strange that this thing is much larger than us.  It has passed through two hundred winters. It has eaten blood meals. It knows your weakness is no easy matter.

The first guide dog trainers devised a rolling cart which they dubbed the “artificial man”. They attached it to dogs in training and, given its essential dimensions, the cart was believed equal to the height of a man and to the width of a man and dog. Pulling these rolling machines, dogs would learn what “not” to do–not to try and pass through spaces too narrow for a team, not to walk beneath a low hanging branch, never to navigate the edge of a ditch. 

I picture the dogs, mostly German Shepherds, and their trainers, German officers fresh from the trenches–a terrible earnestness to their shared activities, and that strange machine like some remnant from the Ardennes.

From What a Dog Can Do: A Memoir of Life with Guide Dogs

Stephen Kuusisto 

Forthcoming from Simon and Schuster, 2014