Category: Disability Perspectives

The House of Representatives is currently considering an appropriations bill that would, among other things, cut by half the requested funds for the Library of Congress "Talking Books"program for blind and disabled readers.  At stake are the funds necessary to move the old fashioned casette tapes of the library to digital playback.  This transition is necessary because the old fashioned tape machines that play talking book tapes and which the blind have been using since the late sixties are no longer being manufactured.  The Talking Books program which is also known as the National Library Service for the Blind must have the full funding in order to continue providing books to people with disabilities.

The very notion that the U.S. government is willing to cut the heart out of the books for the blind program is so disgraceful that even I am shocked by the brazen indifference of our legislators.  What kind of a nation do we purport to be?  We talk endlessly about the respect for life, respect for education, equality, opportunity for all, and at the same moment our federal government will actively consider underfunding a program that has for over fifty years provided blind people and the elderly with the opportunity to read.  What will come next?  Let’s stop funding the protection of environmentally fragile wetlands. Oh. We already did that?  Hmmm. Let’s stop funding for nutritional programs for women in poverty with children. Oh.  We did that already?  Well let’s get rid of the books for the blind and the disabled.  Let’s get them back on the streets with tin cups while we’re at it.  And let them buy their own tin cups.  Maybe Haliburton can manufacture new government approved begging bowls?  Hey, we could try those out in Iraq first?  Good plan! I need a muscular cigar! Where’s my spitoon?  I thought Haliburton was still making those spitoons?

Please contact your local U.S. Representative. Or don’t. One could be tempted to just give up. Forget the fundamental tradition of providing educational opportunity for all.  Let’s change our country’s name to: "The Country Formerly Known as the United States" and get on with the ravaging of the defenseless and vulnerable.

S.K.   

Welcome Ryn Tales to the Planet of the Blind won’t you?  Kathryn is "MOM" to Ellie.  She recently wrote Discombobluated and asked us, her readers, "am I crazy?"  Clearly she is – about her daughter Ellie that is.

We’ll be hearing from Kathryn again as she’s putting together the next Disability Carnival later this week.

~ Connie

I have written two memoirs that are respectively and in part concerned with the subject of my family and the matter of disability.  If you have read those books you know that my mother and father were deeply divided about my blindness when I was a boy.  They knew the "facts" concerning my disability but they had little or no emotional language that might enable our family to talk about the daily realities that accompany visual impairment.

The gap between empirical knowledge and emotional intelligence is a common problem for families that are faced with disability.  I think it’s also the case that this language gap happens when family’s face almost anything they weren’t counting on: teenage pregnancy, drug addiction, alcoholism, an unfaithful spouse–all these problems naturally come to mind.

The difference with disability is that unlike the other circumstances you can’t really deny its existence for more than about sixty seconds, which is about how long the average person can hold his or her breath.  You can pretend that grandma is eccentric for years even as she sequentially sets fire to the living room furniture and wrecks several station wagons.  She’s not a drunk.  She’s gravitationally challenged; she’s "spiritual"; by God she’s a genius!

Even though my family liked to pretend that I wasn’t blind, I always "was" and the story of our growth together has everything to do with learning the emotional language of disability.

Another way to think about this is to imagine that the idea that you can "not think" about disability is as ridiculous as eating opium.  Everybody knows the story of Samuel Taylor Coleridge who began writing his visionary and Romantic poem "Kubla Khan" while under the influence of laudanum.  The poem was coming along nicely when suddenly a local laboring man knocked on Coleridge’s door and interrupted the poet’s "Magical Mystery Tour".  Coleridge was never able to complete the poem and it is routinely reprinted in anthologies to this day, largely as an example of "what might have been".

I’ve always thought of the Kubla Khan story as being a kind of disability narrative.  Disability always knocks and interrupts what you were thinking about.

In turn, I guess you could say that disability asks us to live out in the open and to use our poetic gifts in the service of community.  This is why I believe that so much good contemporary literary writing has been done by people who have chosen to talk about disability in their lives.  Writers like Ralph Savarese, Floyd Skloot, Anne Finger, Kenny Fries, come to mind and of course there are hundreds more.

I owe a good deal to my parents even though they were slow to learn the language of disability.  They encouraged me to take up writing and they understood that progress is progress, even if you don’t always like the new names you have to give it.  My parents didn’t like the fact that I was blind but they learned to talk about it and even admire it.

This is what good families do: we learn new emotional languages together.  One day your daughter announces that she’s marrying someone you can scarcely imagine in your midst.  And then you do imagine it.  And then, after years, you think it was your idea all along.

Thank God for families, even with all their flaws!

Steve Kuusisto

I watched part of the Tony Blair-George W. Bush news conference and was reminded of the old folk story about the turtle on a fence post.  Here were two men who know that their respective places in history will be circumscribed by the course of events in Iraq.  They can’t imagine how this turtle got on top of that fence post.  And so of course they talked about courage and they spoke about the hard decisions that leaders must make and they spoke affirmingly of their corresponding strength of purpose.

The trouble is that for George W. Bush the war in Iraq was always meant to be nothing more than a theatrical production.  It was supposed to be easy.  It was never meant to be a war on terror.  Iraq was nothing more than an extravaganza.  And when it quickly became a civil war with a swift infusion of real terrorists Bush failed to put enough troops on the ground to manage the situation.  We don’t have to wait for history to know these things.

I am certain that our nation’s current course of action is utterly wrong.  No rational person inside or outside the military believes that we should keep our troops in a civil war.

But courage in this instance requires more than the social semiotics of the turtle on the fence post.  Iraq is not the front line in the "war on terror"–it’s a blunder  that looks and smells like imperialist occupation and the sooner the U.S. gets out the sooner we can work toward peaceful solutions for the many conflicts that are heating up across the Middle East.

Such a move will look at first like defeat.  But it won’t be.  History assures us of that.

I wasn’t in the best of moods last night as we headed to town to the Ohio Theatre to see and listen to Dr. Maya Angelou.  In fact I was a little worried I might fall asleep listening to poetry being read for an hour and a half.  But an opportunity to be present in the same space with Dr. Angelou is not something to be taken for granted;  I was determined to adjust my attitude and appreciate the "real moments" gifted to us by this lovely, remarkable woman.

Dr. Angelou is lovely indeed.  Warm, witty, opinionated, wise, courageous…. She actually recited very little poetry last night.  She talked, sang a little and why she even cussed on occasion!  Much of what she shared can be read here.  She talked a great deal about how we all have in our lives "rainbows in the clouds" and how each of us have opportunities to be a rainbow in other peoples lives.  She spoke warmly of her "crippled" Uncle Willy and of the numerous people touched by his presence in their lives – a rainbow to many.  "Uncle Willy was crippled" she said, paralyzed on his right side, perhaps from polio.  No one ever really knew…

Maya shared with us her belief that courage is the most important virtue we can "practice" because with out courage, we can not consistently practice any of the other virtues.  Not consistently, she emphasized.  That’s when she mentioned her reaction to people who call themselves Christians.  "Really?  Already?" she said to the delight of the audience.  "I’m not done being a Christian; I’m still practicing…when did you finish?" 

In speaking of courage, Maya explained to us her refusal to spend any time in the company of others who use the "N" word or any other pejorative words directed at anyone for that matter.  "To Hell with that!"  It takes courage to excuse yourself from such situations, but we all need to practice it.  With great humor, she told us of an experience she had years ago in dealing with "Hollywood" executive types.  Pejorative language was tossed about the room; she left as people warned her that if did there would be no future for her there.  She then reminded us of just how successful she’s since been as an actress, producer and director despite having walked out then and there.  Just be careful, she warned us.  If you do storm out of the room, make sure you take your car keys with you.  Otherwise like me, you’ll be "hiding in the bushes" until they’re gone.

If you ever have the occasion to spend an evening with Dr. Maya Angelou, do not pass it up.  You’ll laugh.  If you’re like me you’ll cry.  You will walk out with a greater appreciation for the rainbows in your clouds and a determination to look for more opportunities to be a rainbow to others. 

If I could say just one thing to Dr. Angelou, I would ask her to have the courage drop the "C" word and to explain to her audiences why she chooses to no longer refer to Uncle Willy as being a "cripple".  We know Maya’s audience is vast.  She is known around the globe for her work and for her words.  If Maya would acknowledge that she’s come to understand that to many, such language is considered hurtful and pejorative, people would hear her message.  Imagine Maya as a rainbow in the clouds of people with disabilities.  Wouldn’t it be magnificent?

Oh, and one more thing I’d like to say to Maya Angelou: thank you for a lovely evening.

~ Connie

Book critic Bill Eichenberger of the Columbus Dispatch recently interviewed Dr. Angelou.  Here is the link.  You may need to wait a few seconds for it to load.

In a post I wrote back in January called Calling All Book Loving Bloggers, I mentioned a book due out this spring called Reasonable People, a Memoir of Autism & Adoption by Ralph James Savarese.  Well, not only is it now available, it’s been reviewed in NEWSWEEK Magazine!  Congratulations Ralph!!!

Steve I know felt honored when asked to write a blurb about it for the book’s dust jacket.  Here is what he said:

"Reasonable People is the story of a homemade disability rights movement, one that defies many contemporary institutional and social service expectations about autistic children.  This is also a book with a historian’s care for facts and a poet’s concern with emotional candor.  It belongs on the shelf with the best work in disability history and memoir."

I’m hoping Steve will find time soon to write more for us…

Here is what Morton Ann Gernsbacher, Ph.D. had to say about it:

"Articulate and passionate, Savarese’s intricately crafted memoir of his son’s early years challenges all of us to embrace diversity, to triumph over adversity, and to become not just reasonable people – but a reasonable society."

Here are a few blogs discussing it as well:

Autism Vox;
The Joy of Autism
Autism Society of North Carolina Bookstore

Again – Congratulations to Ralph.  And to DJ, Ralph’s son.  DJ contributed his own chapter called "It’s My Story!"    DJ, thanks for sharing….

~ Connie

I discovered this fundraising event while reading the local newspaper this morning.

The Mental Health America of Franklin County  is "dedicated to promoting mental health in Franklin County through advocacy, education and support services."  On their web site there are all kinds of links offering information, resources and support, both local and national.

They are currently hosting an online auction.  New items are added every day under 26 different categories.  While there are items listed best taken advantage of by people who live or are willing to visit locally, don’t let that stop you from taking a look.  How about bidding on a one week stay in a "cottage" on the Outer Banks.  Prefer a Florida vacation?  How about a stay in a townhouse condo in the Florida Keys?  There are also books, gift cards and many other items to choose from that could easily be shipped.   

MHAFC 2007 Online Auction

Mother’s Day is coming up.  Find a gift for Mom and support an important cause.  Just a thought…

~ Connie

First off I want to say that I can answer lots of mysterious questions because my grandparents came from the Finnish woods and they knew all about forest superstitions and so if you want to know why socks disappear in the laundry room I am your go to person.  (They of course didn’t have a laundry room in the Finnish woods, but they did have sock fairies and yes, it is true that your socks will be stolen if you covet even for a minute someone else’s possessions.)

The fact is that there are over fifty million Americans with disabilities and if you factor in that these people have friends and families the disability vote may in fact be the largest sector of the voting population.  Yet its seldom one hears the "d" word when our plutocrats are gilding the lily.

The reason is that disability is believed to be a code word for "entitlement" and both the Republicans and the Dems want to avoid the appearance of being in a "giving mood".

Yet disability and its associated issues of accommodation and universal design and health care policy should be an opportunity to encourage a capitalist system to invest in improving the lives of people with bodily differences.  The consumer numbers are certainly already there. And the numbers are growing.

Since all the major candidates in both parties are now on the web I encourage people to write disability related questions to each and every political hopeful.

If you don’t have a lot of time then one question will do:

Dear _________: How can we at last assure that people with disabilities in the United States can fully participate in our nation’s economic and civic culture?

You could also ask each candidate to talk about the sock fairy.

S.K. 

P.S. submitted by Connie:  read what this man, Eric Taffoureau-Millet, is doing in France to bring attention to this very issue.

P.S.S. also by Connie:  I was looking for the link to the Rolling Rains Report by Scott Rains (for the accomodation and universal design link above) and in doing so stumbled on Scott’s May 2 post titled: Why Stephen Kuusisto Will Let Stephen Hawking Blast into Space First.  Read this comment by Scott and you’ll want to read more of his post:

"Who can predict the cultural fallout of someone as visibly and severely
disabled as Hawking penetrating the sanctum of space travel machismo. Brokenback Space Cowboys on DVD?"

Thanks for the link Scott.

A long time ago, in a galaxy far away, I believed (with ardor) that the Americans with Disabilities Act would usher in a thrilling new era of employment opportunities for people with disabilities in this country.  I was only 35 years old when the ADA was ratified and signed into law.  I suppose you could say that I was just young enough to be uplifted by the adoption of a sweeping civil rights law.  Young people are necessarily idealistic and thank heaven for that fact.

Still, 17 years later I can see how the organized "disablism" of corporate and right wing forces have worked assiduously to undermine the ADA and to further ensure that people with disabilities remain largely unemployed.

That last sentence was painful to write.

Nevertheless, a long string of U.S. Supreme Court decisions have been hostile to the power of Congress to enact civil rights legislation for people with disabilities and in turn the court has been hostile to real human beings who have real disabilities. 

This is not simply a matter of personal opinion.  You can look it up.

In fact, the U.S. Supreme Court has been so hostile to disability rights that Congress has started to consider legislation that’s aimed at restoring the employment discrimination oversight powers to the ADA.

Disablism is in my view the organized and determined use of power to prevent people with disabilities from becoming full members of society.

I believe along with tens of thousands of other people who have disabilities that the highest court in our land is guilty of disablism.

Justices like Antonin Scalia believe that people with disabilities should be grateful just to be carried up a flight of stairs when there’s no ramp available in a federal building.  You can look it up.

Disablism is an organized and conscious affair.  It differs from ableism which is simply a fear and misunderstanding about disability.  The person who wants to pray for me on the public bus is an ableist.

Judges on the Supreme Court who argued that an employee whose job had been terminated because she had cancer had no legal redress because the federal government had no jurisdiction over a state’s right to fire someone, were, and are, disablist.  They are looking for a loophole in the U.S. Constitution to argue that federally mandated civil rights guarantees won’t protect a disabled woman in Alabama.

You can look it up.

Disablism is still rampant long after the ADA.

Shame on our Supreme Court.  Shame on the employers who spend millions to set back the cause of employment for people with disabilities.

On this day when disability rights advocates are blogging about matters of disability discrimination I want to join the chorus of good voices in cyberspace.

Disablism is alive and well in the Supreme Court and those justices who do not believe in the rights of people with disabilities are shameful men, men who are out of step with our nation’s sense of fairness.

That’s my take.

Steve Kuusisto

Follow this link for more thoughts on Blogging Against Disablism

Join us won’t you?  Steve is contributing a post to this "event" being hosted for a second year at Diary of a Goldfish, along with many other strong voices.  Yours included if you’re so inclined.  Blue says:

"Everyone is welcome to join in with Blogging Against Disablism day,
disabled and non-disabled, as long as you wish to blog against the
discrimination that disabled people experience."

"On Tuesday, May 1st – or as near to as you are able – post something on
the subject of Disabilism, Ableism or Disability Discrimination (see Language Amnesty).
You can write on any subject, specific or general, personal, social or
political, anything which states an objection to the differential
treatment of disabled people."

For more info: Blogging Against Disablism Day