Planet of the Blind

Sauna Talk

So I went to the local health club and had a long swim and then I went and sat in the sauna. A woman there asked me if I "could see anything at all" and when I said "colors and shapes" then she just went on and on. "Can you tell that I’m female?" "Do you see my shape?"

Godfrey Daniel! I wanted this woman to shut up. I was wrapped in my own private endorphin Eden and I didn’t need this miscreant to ask me about my blindness and for God’s Sake I thought she was going to grab my hand and put it to her face and say: "Can you tell what I look like?"

So because she wouldn’t stop talking I just got up and walked out. It was easy.

She probably thought: "What a miracle, the blind man walking away, all by himself."

People with disabilities seldom get a break. Some days you just feel like Hester with the scarlet "A" on your chest.

Shut up! You! You Out There! Read a book about eye disease. And do it in the privacy of your own home or apartment. Promise yourself that you won’t spoil other people’s hard earned moments of bliss.

Of course the real problem in this sauna was that it wasn’t the authentic Finnish variety. In Finland if there’s a jerk in the sauna you just throw more water on the stones and drive the fool away with hot steam.

This was one of those pale imitation American saunas which is just a hot little room without the all important bucket of water and ladle.

I think from now on when people do this intrusive "do you know what I look like" thing, I’m going to say, "Yeah, you look just like Sponge Bob."

Emotional Appeals, Corresponding Anguish

Labor Day is upon us and this means that it is time for the annual MD “telethon” and as many already know, corresponding anguish will be felt by people with disabilities in perfect accord with the emotional appeals that are used by the telethon industry.

I don’t want to persuade people to give up on charity—especially where real cures can be found for illnesses that can alter lives. I do wish that the fund raisers in all areas of disability related work would wean themselves of the old fashioned Victorian language which is dependent on words like “courage” and “inspiring” and “heroic” and the like.

As a person with a disability all I want today is to be a regular citizen. I don’t want to be any more inspiring than the person next door.

Can’t we have medical advancements and good rehabilitative services without patronizing lingo?

The problem is that the treacle of “old charity” really gets folks to open their wallets. Rational discourse doesn’t seem to “do it” and isn’t that kind of interesting?

But we can cure muscular dystrophy and champion the dignity of people who have MD. We really can do both of these things. Why are charitable organizations so afraid to try new and dignifying approaches? Ah, we’re back to the wallet.

Here’s an idea: the donors can bid for a chance to be on a reality TV show in which they must survive by living with the challenges of people with disabilities.

This scenario would provide both charity and comedy.

You may say that I’m a dreamer, but I’m not the only one…

Read Connie’s thoughts in her post on the [with]tv blog: Same Old, same old

MDA Telethon: Wrong Message Overshadows Original Good Intentions.

The following text comes from a blog I just discovered: Miss Crip Chick’s Weblog…thanks to a recent comment from Kara:

"Jerry Lewis is the host of the Muscular Dystrophy Association’s Annual
Telethon, a telethon that occurs every Labor Day to raise funds for
cures by using disabled people as posterchildren. Disabled people
protest the telethon because of its outdated, negative portrayal of
disabilities. These images that the telethon promotes sticks in
people’s minds and continually serve as a barrier for disabled people.
Disability is not the problem, but rather the attitudes and barriers
that society places on us."

"What can we do? Protest. Write a Letter to the Editor. Tell people
about the charity, medical, and social model of disability. Blog. Kara
and I, along with the Disability Activist Collective (website coming
soon) are organizing a campaign against the telethon and the charity
model of disability. We need bloggers (not only
disability bloggers but all! feminist, queer, woc, environmentalist,
activists, great time to build alliances) who will agree to write about
this! The campaign will work much like a blog carnival and will be
heavily publicized in listservs and other sources of media. We
encourage you to participate! To participate, please a comment or email
us a consciouslycrip@gmail.com
We will be announcing the campaign on Thursday via media and will tell
them to check the website postings on Monday. The campaign will be
posted on Kara’s site."

Visit this link for more information, including "A template letter the Disability Activist Collective wrote for you to use…"

Walking Catfish

Alright, I admit it: I talk a lot. I wake up talking. I talk like a man who has had a gallon of Turkish coffee. (Note: when you’re in Greece don’t call it "Turkish coffee").

I woke this morning and said "bean sprout and Buddha" though I don’t know why. Then I said "winged chestnuts and garland of daisies".

I do not know why I say such things. I do not have Tourette’s and I can control my impulses to sing and dance for the most part, unless I have had too much of the grape.

The troubling thing is that I tend to wake up in a state of advanced good cheer. This is very annoying to the people who must share the kitchen with me. I’m talking right away about the kings of France and about the swell shoes they used to wear at Versailles.

I am, in short, full of exquisite dung. I am a minor character in Finnegan’s Wake.

Tuesday; walnut; hardware; ballet; ars moriendi; blow fish; spoon dropped in the snow…

I wake this way.

And sometimes I wish it might be otherwise.

On the bright side: I don’t have to fawn after the news for good cheer. I am glad that Alberto Gonzalez has resigned from the Justice Department. I am glad that the New York Mets are in first place in the National League East. I’m very glad that the Chicago Cubs are making a run for the Central Division.

I’m glad that genetic research is becoming a branch of linguistics.

I’m glad that autumn is coming and that college football will be returning this weekend.

I’m grateful to live on the same planet as Bishop Tutu.

But like Paul Simon, sometimes I feel like the only living boy in New York. I can get all the news I need from the weather report. I wake up saying "cake walk; la vie en rose; big bang; photo synthesis siblings…"

"Goodbye, Alberto. Goodbye grimy soap. Goodbye propeller hat. Goodbye walking catfish."

The Day of the Station Wagons

Those who have read Don DeLillo‘s classic novel "White Noise" will recall his designation of the start of the university’s calendar year as "the day of the station wagons". The entire campus is suddenly overrun with family cars as bewildered parents and their respective happy or diffident children unload the "stuff" that all Americans believe they can’t live without.

As I embark on a new year of teaching at the University of Iowa I find myself wondering if perhaps the immense amount of "stuff" that college kids are unloading might mean that materialism is the new "reasonable accommodation" for "normates". You see, "normal" people seem to need a lot of items just to keep their normative lives in trim. Gone are the days when a kid could move into a dorm room with a steamer trunk and a typewriter. (That’s what I took with me to college believe it or not.)

Nowadays everyone needs his own microwave, refrigerator, HD TV,; computer, popcorn maker, mini component stereo with iPod connectivity, cell phone, coffee maker, and these are just "the basics" as the normates like to say.

Normal life is now as complicated as maintaining an iron lung. I picture the new dorm residents lying prone under this mountain of gadgetry and status life accouterments and I feel a bit sorry for them.

The poet Gary Snyder used to say that one shouldn’t own anything you could not leave out in the rain. I have it on good authority that Gary now uses a "Mac" so there it is: even a Buddhist poet needs to keep up with the times.

Activists in the disability rights community have long been arguing that "disability" is a social construction, and one has to wonder on the day of the station wagons if perhaps the high price of American normalcy is a bit too dear.

I travel with a guide dog and I need to use a talking computer and sometimes I feel bad that I need to ask for accommodations. But I’m starting to get it. American daily life is just one big commodity accommodation and by jimminy if you don’t have your own entertainment and appetite devices , well you might as well just stay at home.

David Hosts Disability Blog Carnival # 21

David is Growing up with a Disability
and believes "society often underestimates the complexity of living
with a disability – the joys, the challenges, the ordinary, and the
extraordinary."

As host of the Disability Blog Carnival this month, he warns David Letterman to "move over" because "here come the bloggers!"

"The topic for this carnival is Top Ten Lists, and people put together a variety of lists on a variety of topics."

David, we’ve never seen you in a double-breasted suit like Letterman wears, but we bet you’re equally as dashing! Audience, don’t you agree?

As per David:

"The next carnival will be hosted by Reimer Reason on September 13, with entries due by September 10. Posts can be submitted via the carnival site. Update – Penny says the theme is "Resilience".

Cross-posted on the [with]tv blog

On the Road Again

We’re entering Phase II of our transition to Iowa today. I’m driving Steve, Vidal, and "stuff" to Iowa City where they will stay with friends (dear friends) while I come back to Ohio to sell our house. (Phase I was moving Ross, our 18 year old, into his own place…)

I guess it’s too early in the morning to sort through my thoughts. Or perhaps I’m just feeling numb.

~ Connie

Chautauqua Mystique

We all know that human beings are tribal creatures and that we suffer when we don’t have a neighborhood to live in. Even "deviants" like academics and bishops need to have a community. Still, knowing this and feeling it are substantially different experiences and I was reminded of this during my recent two day visit to Chautauqua in western New York. Plenty of people have written about Chautauqua and tons of really important people have gathered there over the last century and far be it for me to claim any special insights about this remarkable gathering place. All I can say is that I have seldom beheld so many intellectually curious and kindly people in one location. From the visiting artists and thinkers to the staff who maintain the generous grounds to the very children of the families who come to the lakeshore to engage with the arts and sciences, everyone was humanely awake. People were curious about each other. "By God," I thought, "this is the America that Walt Whitman once hoped we might create." We are in this life together and living it must be a collective celebration if this social experiment is to work.

I am by nature a mildly suspicious man and so I kept thinking that some odious and officious little person would appear and tell me that I obviously didn’t belong there. I imagined that some guy wearing an Odd Fellow’s fez would turn up and yell at me for walking with my dog on the grass. Or maybe someone would say that my books are "too wordy" or "too dirty" or someone would say that I obviously buy my shoes at the discount warehouse.

But as far as I know, no one wearing the "fez of bureaucracy" followed me about.

I was impressed by all kinds of events: Peter Gelb spoke about his experiences as the new managing director of the Metropolitan Opera. Daniel Levitin talked about his career as a rock musician turned neurologist–he’s the author of a terrific book entitled "This is Your Brain on Music". I got to hear the contemporary Israeli composer Yinam Leef talk about time and its role in the composition of his work. I met Mary Rogers, the composer of the signature Broadway musical comedy "Once Upon a Mattress" and Connie and I had the opportunity to see and hear a wonderful production of that famous show.

Still, the signature moment for me was when a pre-teen boy, maybe around 11 years old, stopped on the sidewalk because he heard Connie and I talking with a couple who were walking their Wheaton Terrier. We were saying that we’ve thought about getting one of these dogs someday. This boy stopped in his tracks and turned and with evident joy encouraged us to do it. You see, he also has a Wheaton Terrier.

In an era of besotted video game kids who mostly mumble, well, this was a moment of Chautauqua mystique: even the kids are encouraging of others and fully awake.

S.K.