Author: stevekuusisto

Governor Mitt Romney’s recently revealed remarks at a fundraiser demonstrate a remarkable detachment from reality — and a profound misunderstanding of the challenges faced by everyday Americans, including people with disabilities.

Governor Romney’s comments are troubling and wrong in two major ways:

First, it is simply not true that 47% of the American public pay no taxes. In fact, according to the Center on Budget and Policy Priorities, 61% of Americans who pay no federal income tax are instead paying payroll taxes (Source:http://www.cbpp.org/cms/index.cfm?fa=view&id=3505). These are not folks who want a handout. Belittling low-income workers for paying payroll taxes is simply insulting. 

Second, by characterizing those who do not pay federal income tax as people who are not willing to take responsibility for their lives, Governor Romney has (whether he is aware of it or not) leveled a tremendously unfair charge at a  group that makes up a large part of that category: people with disabilities. Accusing Americans who either cannot work or cannot find work due to a serious disability of having some irreparable character flaw is beyond insulting: it is callous, narrow-minded, and silly. 

As the Center on Budget and Policy Priorities has noted when discussing proposals to change the tax system to force low-income individuals to pay some federal income tax:

“The remaining 17 percent [of Americans who pay no federal income tax] includes students, people with disabilities or illnesses, the long-term unemployed, and other people with very low taxable incomes.  To make these people pay federal income taxes, policymakers would have to tax disability, veterans’, and similar benefits or make full-time students and the long-term jobless individuals borrow (or draw from any available savings) to pay taxes on their meager incomes.” (Source:http://www.cbpp.org/cms/index.cfm?fa=view&id=3505)

If this is the mindset Governor Romney would bring to the negotiating table as president, people with disabilities now have even more reason for concern than they did last week, when the Romney campaign was merely ignoring them while proposing massive cuts to Medicaid. Now, it appears that active disdain could be driving those bad policy proposals. 

People with disabilities are not looking for a handout. What’s more, the benefits they receive are not handouts. Those benefits are an indispensable system of services and supports that allow people to live in the community, to go to school, to maintain friendships and be near their families, and, yes, to train for and apply for jobs so that they can achieve the goal of independence and self-reliance that Governor Romney claims to value so highly. Unfortunately, he doesn’t seem to have a very clear vision of what that goal means to millions of people with disabilities, or what it will take for many Americans to achieve it.

Governor Romney has reduced millions of people facing real challenges to a caricature. He says they fail to take responsibility for their lives. We say he doesn’t understand the true meaning of the word responsibility — which, in the America we know and love, means backing each other up, helping each other improve our lives and improve our country, and not allowing any of our fellow Americans to slip through the cracks in the system. 

Governor Romney has clarified this debate and shown his true colors. It’s not a pretty picture. 

We shouldn’t stand for it. We should fight back. 

You can start by learning more about what President Obama is doing to fight for people with disabilities: http://OFA.BO/ARsQ3b

It’s quite a contrast.  

I care what people think of me, but I do not always care. A proverb might be attached: sings to the wind, sings to stillness. Something like that. A student put me in mind of this, asking me how I keep myself buoyant (my words) in a world of endless disappointments (my words) and I said that in my experience those who do not like you would never have liked you, and so what chance do you have? You simply make the music that is your life. I’m always making analogies, not only because that’s what writers do, but because for over a hundred years the thinking of our thinking classes has been infused with metaphor, whether you’re a poet or not. So religion is about ideas of god, science is about wish, far more than scientists will allow, and art is what you make of it. And that’s a fancy way of saying you can’t please everybody.  

It is a sobering moment when you first realize that the educated in the US are afflicted by self-loathing and self-doubt to the same degree as your butcher. Talk subsumes surprise all too often, and a grey formalism mixed with gall settles in. You see it in university professors but also in bureaucrats and business people–a vague, unspoken sense that wisdom is not enough in a life. It’s as if the nervous self-awareness of adolescence has become permanent for millions of people; growth has stopped; and so the millions live in thrall to sad confirmations. You can ask why this should be the case and according to the province of theory you’re in, you will get different answers depending on whether you’re reading Osupensky or Marx or Alan Watts. What matters is that one is surrounded by idio-pathic zombies, which is of course why zombie games are so popular on mobile devices.

And so I don’t care what people think of me–I’m a person with an evident disability living in a civilization that sentimentalizes disabilities. The blind man who climbs a mountain can dine out forever giving talks about inspiration–talks that tell millions who live in thrall to sad confirmations that their lives could be bigger if only they dared live bigger. I have a general disdain for these sorts of talks, and in truth would rather have a colonoscopy without anesthetic than listen to the treacle that far too many celebrities with disabilities willingly toss at conferences and conventions. Inspirational speaking is always missing the point–that life is life, and lived with better ideas it’s a better business. Life is not cavalier emulation. It’s something else. It’s perhaps nothing more than a flaunted non-sophistication that finds honest satisfactions. And it’s about inviting your neighbors in, after you’ve swept the house. If you’re going to emulate someone, emulate the teacher who read a book all weekend. 

Meantime, I don’t care if I’m not liked. Oh I grieve over it a bit. But what I want isn’t personal. I’m not indifferent to the peculiarities of the world, the one we’ve made. I’m angry that Lockheed Martin can advertise weapons of mass destruction on my television. I’m angry that young people are being told their votes don’t matter; that people of color in my country are being prevented from voting because they don’t have driver’s licenses; I’m wildly angry that my nation has killed a million citizens of Iraq for nothing more than a bullying neo-conservative idea that we could export democracy at gun point. I’m angry that the old damage of American imperialism is so poorly understood by my neighbors, many of whom honestly believe that muslims hate America because we’re Christian–failing to realize that our foreign policy has undermined the dignity of human life in a large part of the world for a generation and that human beings have a good grasp of what has been happening to them. I wake up angry. I go to bed angry. And in the meantime I walk about. 

I live in the communion of words with my firm shoulder blades and half groomed head and I read as much as I can about liberty and I say what I must. 

If you have a disability you see almost daily how many have learned the language of shoulder shrugging. If you work at a university you see professors who shrug–they’re my pet peeve–the ones who don’t want the students with disabilities in their classes. And the administrators who make it hard for faculty and staff with disabilities to do their jobs–I can’t stand their shrugging. The latter especially as it’s loaded with double talk.  

So to that student who asked: I think of the static from the remorseless sun and keep shining. 

It was a gloomy day and I found myself reading Matthew Arnold. I wanted god and love and  knew both to be evanescent, and I also knew (as I’ve known since adolescence) that both are simply ideas. And so I thought of Matthew Arnold: for the world, which seems to lie before us like a land of dreams, so various, so beautiful, so new, hath really neither joy, nor love, nor light, nor certitude, nor peace, nor help for pain…

One may go on: Arnold’s god was the product of a cartoon where the old testament meets the new testament and creates a granitic and loving deity who can only be envisioned by intense meditation. Thinking of this late in the day encouraged my sadness. Oh the sad retreat of the Sea of Faith; the mordancies of knowing what imagination can and cannot do. 

I thought today how Arnold presages Stevens in his tough minded insistence that poetry stands for something. 

And in the meantime I played with dogs, wrote a book review about disability and American history, affirmed the rightness of a film under production about autism and poetry, and ate, standing up, half a burrito. 

I did not go to the ocean. It was in my head all day. 

Gore Vidal on the academic American novel could just as well be describing the state of the Romney campaign:

Maximum entropy is that state at which no heat/energy enters or leaves a given system. But nothing known is constant. The Second Law of Thermodynamics appears to be absolute: everything in time loses energy to something else and, finally, drops to zero (centigrade) and dies or, perhaps, ceases to be matter as it was and becomes anti-matter. Question: to anti-matter are we anti-anti-matter or no matter at all?

When I saw “the video” of Romney talking to his private donors club (the 47% video) I thought, “he’s in his laboratory.”

Posted with Blogsy

“Therefore all deformed persons are extreme bold — first, as in their own defence, as being exposed to scorn, but in process of time, by a general habit.”

–Francis Bacon “Of Deformity”

1.

The pregnant emptiness. 

Morning, color of shipwreck. 

Without leaving the present, or the condition prior to entrance, our spine was always curled like a fetus. 

2.

Ignominy, jewels of perdition strung together. 

3.

The eyes are nudists. The eyes have no philosophy but they cry to be entertained. 

4.

Boyhood: all lapsus linguae. 

Even now I keep a mortal house with no inhabitants.

5.

Last night I cracked a window and my hands shook as they often do. The body, the dark, the raising–what? I saw how literalism and futurism are of little value when you’re crooked. 

6.

The broken body is fire. Das Lebend’ge will ich preisen/Das nach Flammentod sich sehnet

Walked the neighborhood, slowly, in the way of the crippled, but I was really in the cave of phantoms–

Playing a part, spiritual body, no singular life

Bones full of warnings

7.

Routine, dismal, bored with gathering. 

A cripple reads too many newspapers. 

8.

Canary on the terrace filled with excess. His narrow throat of destiny.

Of deformity, knowledge is specific, enters the man like seeds.

9.

Incarnation is iconoclasm.  The crooked man throws ashes.

Advances across borders. 

10. 

Desperately rocking like a cart loaded with coal.

That men are pre-formed is beyond dispute, but the method is unknown.

By Andrea Scarpino

Here’s the thing : no one wants to talk about breasts, at least not without giggling or pointing or making jokes. We all seem to adore them—children, women, straight and gay men alike—but when it comes down to actually having a conversation about them, things get pretty wonky pretty quickly. 

I know this as fact. When talking about my now two-decades-long struggle with breast pain, I’ve watched listeners shift uncomfortably in their seats, watched doctors cover their smiles—and worse, laugh heartily without trying to hide their laughter. Even my mother changes the subject pretty quickly. Breasts may be just another body part like arms or legs, stomachs or livers, but they carry so much metaphorical and symbolic weight that we can’t ever seem to understand them as such. 

And here comes a book dedicated to all things breast : their evolutionary history, our fascination with them, their double-identities as baby feeding machines and sites of sexuality, their illnesses, their ability to absorb and store chemicals. Florence Williams can’t escape from breast jokes and giggles, of course, but that may be part of the book’s charm : she knows her subject matter is uncomfortable, and she gives us permission to laugh—I mean, we’re going to anyway. 

As expected, much of Breasts is dedicated to breast cancer, which has grown at a rate that should alarm us. And in that, I learned I’m lucky to have made it this long cancer-free, what with my early onset puberty, extensive exposure to radiation as a child with physical disabilities (x-rays, MRI machines), extensive soy consumption (a vegetarian since my teenage years), extensive exposure to chemical pollutants (in virtue of living on our heavily polluted planet), no pregnancies. 

But much of Breasts also glances sideways at our construction of disease. According to Williams, it was 20^th Century surgeons who pathologized small breasts, even developing a term—micromastia— which they likened to a deformity. The same goes for menopause; Williams writes that drug companies invented “a new pathology called menopause in the same way the surgeons had invented one called micromastia.” All the better to sell us implants and hormone replacement drugs! The social construction of illness at its finest! 

And much of the book helps make sense of how complicated our biology really is, how sensitive breasts are to our environment, which helped our species survive (keeping babies alive even through times of famine, for example), but which now, given our high rate of pollution, threatens our survival. As Williams makes clear : as go the breasts, so goes humanity. And breast health isn’t looking very rosy. Inuit women’s breast milk is so toxin-filled it could now “technically qualify as hazardous waste,” more and more men are developing breast cancer and at younger ages, more girls are entering puberty earlier than they ever have before. 

And more and more people are like me—without cancer but still struggling with “unspecified endocrine disorders” and “other signs and symptoms of the breast” (diagnoses from my medical files). Our Earth—we’ve really screwed it over. And in doing so, we’ve screwed over our breasts, our bodies, our future as a species. Or we haven’t—the science linking breast diseases to toxins, Williams makes clear, isn’t as cut-and-dry as we would like it to be. 

Still, there is much to fear from all the toxins we’ve created and pumped into our Earth, all the toxins we pass on to our babies in the womb and through breast milk, all the toxins we eat and drink and breathe. And there’s much to fear, I’ve learned from reading Breasts, in not understanding breasts as well as we should. They’re not just body parts, Williams makes clear, but sentinels. Warnings.

We at Planet of the Blind love this piece by Laura Shumaker about parenting and autism. Here’s how it opens:

I saw a woman at the gym the other day that I really wanted to avoid.

I used to see her a lot when Matthew was small. It seemed she was always there when he was bolting away from me at the grocery store, the swimming pool, the park. She watched me as I tackled Matthew before he wandered into the street, and while I tried to defuse a big bad meltdown. She was always sitting right behind us in church while Matthew flapped and tapped and giggled. Her pale blue eyes followed us everywhere and her frown was constant.

Mr. Stromer, a student at the New York City Lab School for Collaborative Studies has cerebral palsy and is one of eight high school seniors  the world blogging about their college searches for The Choice. 

A majority of students with disabilities in New York City public schools do not graduate. I have a responsibility to make the most out of my college process and journey so that I change things in the future and redefine what it means to have a disability.

I am excited to share my journey through the college process with you
http://thechoice.blogs.nytimes.com/2012/09/14/envelope-please-bryan-stromer-1/