Same Old, same old...

Written by: Connie Kuusisto

I think I was ten years old when I saw my first Jerry Lewis MDA Telethon. I was definitely too young to know better. For the next couple of years I spent much of Labor Day afternoon watching the spectacle. But I was ironing mind you - what better way to spend hours ironing your father's white dress shirts, slacks and hankies and your family's pillowcases than to watch all those celebrities dance and sing and applaud each other for the wonderful work they were doing. (Yes, we ironed pillowcases back in those days.)

Oh and the kids. Those "poor, sweet" kids. Why they were just as cute in their little leg braces and their wheelchairs as any of the kids I knew. It's a shame they couldn't run and play like I could. (Yeah, but they didn't have to stand there and iron for hours either.)

The money just kept pouring in as the oh, so generous people opened their wallets and corporations tried to best one another. A check for $10,000! Oh, thank you! Here's one for $50,000! Can you believe it? Oh, thank you, thank you! And here's little Timmy: Timmy cracked open his piggy bank and is donating $12.32. Timmy, your parents must be so proud of you...

Drum roll please...our new total is....!

On more than one occasion I plunked coins into the MDA display can by the cash register as I purchased bubble gum and ice cream. That was something to be proud of too wasn't it? I thought so...

You know, I'm not going to totally bash Jerry Lewis and the MDA Telethon. In the title of a post I submitted on Planet of the Blind, I stated that the wrong message overshadows the original good intentions and that's as cynical as I'm choosing to go. Jerry Lewis and thousands of other people have worked tirelessly to raise funds for medical care and research for people with disabilities. They do have good intentions don't they?

Here's the thing though: in the 27 years since I was ten years old, I've evolved. I almost never iron anymore. I've worked side by side with people with disabilities; I married a man who can't see; I've been involved in walkathons as support staff to people with disabilities (and their guide dogs) who raised all the money and then did all the walking. I've learned that no one needs my pity. I've come to understand that emotional appeals used by the telethon industry often lead to corresponding anguish felt by people with disabilities.

Yes, I have evolved. I wish I could say that the Jerry Lewis sponsored MDA Telethon has also, but strong voices insist otherwise. I wouldn't know. I haven't seen it in years. But I'm not the least bit surprised. Why just this morning I heard on the news that Tony Orlando is in NYC to perform for the telethon....I think he said he's been doing it for what, 28 years...?

Disability Matters. 1st Edition

Written by: Connie Kuusisto

Just as "It Takes a Village" to raise children, it also takes a village to raise awareness about issues of disability.

"By uniting people with disabilities and those desiring to enjoy our social intercourse, share our cultural perspective, understand our political agenda, and address our broad general and specific consumer needs, we will achieve success."

This statement, borrowed from the powerful Mission Statement of [with]tv is also useful when referring to the community of bloggers discussing issues of disability. [with]tv is on a mission to unite people with disabilities....and everyone else. This blog has been created to support that mission and this blog, like every other blog, needs a village.

Having said that, we would like to introduce the following blogs to our blogroll titled "Disability Matters". Please visit, comment, link and enjoy one another as we celebrate life, with or with out a disability, and each other. Let us welcome these blogs, and their "bloggers", to our [with]tv Village.

The Day Al-Mohamed Blog: Day lives in Washington DC with her partner and two very spoiled yellow labradors. By day (no pun intended) she is a mild-mannered Legislative and Federal Affairs Officer but by night she is another frantic-typing, tea-swilling, candle-burning writer. For a more formal bio, please visit Day at her other blog, Day in Washington: Home of the Disability Policy Podcast.

David at Growing up with a Disability says "I am 21 years old and am taking a year away from college to pursue this project. I like sports, music, travel, and conversation. And, I have cerebral palsy. I believe society often underestimates the complexity of living with a disability - the joys, the challenges, the ordinary, and the extraordinary."

Planet of the Blind is "a space where those of us who live on the Planet of the Blind, or any other planet, can share our experiences and network together."

The Rolling Rains Report is a most informative blog "Precipitating Dialogue on Travel, Disability, and Universal Design" - and then some - by Dr. Scott Rains.

Rob Roy at The Journey believes that "Through sharing stories, we can learn accurate information about specific disabilities and challenge ourselves to look beyond people’s limitations and embrace diversity. Welcome to the journey where we explore truth and watch it evolve creating a better world for all -- one that is inclusive of all."

Ruth is a Wheelie Catholic and writes "a blog about issues concerning people with disabilities providing information, raising concerns, sharing experiences and encouraging prayerful efforts toward social justice and inclusion in the Catholic church community and the world at large."

Calling All Bloggers...and everyone else

Dear Friends,

As a volunteer working with the folks at [with]tv I have recently been honored with the title “blog master”. In that capacity I am writing to disability bloggers I know and respect to ask for support. I (we) are hoping you would be willing to either write a post, submit a post you’ve already written, or even join us as a “columnist” and submit posts whenever the mood strikes.

Posts can be submitted to my attention at articles@with-tv.com. This blog is a work in progress and I (we) sure would appreciate your support. While you’re here, please sign the Guest Book and let us know what you think. We’re working hard to spread the word. Anything you can do to help would surely give us a boost!

Thank you,

Connie Kuusisto
Blog Master, [with]tv

P.S. A person need not be a blogger to submit articles to [with]tv or to sign the Guest Book. Anyone interested in the topic of disability is encouraged to participate.

Cross-posted on the Planet of the Blind

Meet Columnist Connie Kuusisto

Connie Kuusisto has worked for over twenty years in the world of guide dogs and their blind partners, first as a Trainer/Instructor, then as Manager of Admissions at Guiding Eyes for the Blind, one of the premier guide dog training programs in the United States. She co-founded, with her husband Stephen Kuusisto, Kaleidoscope Connections, a resource for bringing people together to help promote disability awareness. Together they've worked with a wide range of businesses, including Sandals and Beaches resorts in Jamaica, where they've given workshops on customer service for people with disabilities.

You can visit Connie and Steve on their blog: Planet of the Blind

He's Blind. I Married Him Anyway.

Written by: Connie Kuusisto

Note to reader: I had written this post back in January and was thinking of submitting it for use on this blog. Then I read Laurie Rubin's terrific post, Two Invitations, and realized now is as good a time as any to follow up with mine...

The world is full of perfectly lovely, well-intentioned, but in some ways, clueless people. Admit it. There are people in your life who, as much as you care for them and they you, could use a little "disability awareness" training. There are also people who are ignorant. And there are those who are just plain mean. I won't make the claim that I've "seen it all", but as a former guide dog instructor / manager of admissions at a highly regarded guide dog school, I've seen and heard plenty. As have you I'm sure.

A few years ago I was asked, as a member of a local women's group, to be on the nominating committee for the next year's "officers". I was the youngest person in the room. I was, I'm pretty sure, one of the two youngest women in the entire club. I'm talking decades here. I assure you the other women in the room did not attend school in an age when children with disabilities were "mainstreamed" into public schools. Nor had they ever given much thought, I'm sure, to the concept that they themselves might only be temporarily "abled". Time was no longer on their side..

Before the meeting started, I was enjoying small talk with one perfectly lovely woman; I'll call her "Alice". Alice eventually revealed that she had heard from "Betty" that my husband was blind. Really? Can he see anything? Does he work? Well how does he get to work? Really? How did he go blind? Really? Was he blind when you married him? OH REALLY!!

Well it just so happens that my husband is, among other things, a talented writer and I'll take any opportunity I can to plug his book "Planet of the Blind" (including this one!). So I gave Alice the particulars and suggested she ought to read it. "Oh isn't that nice. Oh I will read it! Thank you for telling me about it...." And then, just as we were being interrupted by the announcement that the meeting was coming to order she said, almost under her breath, "So. He's blind and you married him anyway...." *Smile* Alice fell into the "perfectly lovely, well-intentioned, but in some ways, clueless people" category. She didn't mean to sound insensitive. I know she didn't. She's far too nice.

Is that what people think? Was this sweet little grey-haired old lady just voicing what everyone else thinks? Oh if they only knew. To quote Ralph James Savarese in his soon to be released book: Reasonable People: a Memoir of Autism and Adoption, she "underestimated what a relationship is, conceiving of disability only as deficits."

You see, I was married once before. I call my ex my "insignificant other". My insignificant other could see just fine. He could mow the lawn in straight lines. He could drive to the corner store for milk. He could change the oil in the car and make sure the tires were inflated properly. And I'll say it hear and now, he was the neatest roommate I've ever had. On Saturday mornings we'd do housework together. Let me tell you, he was meticulous. Not a crumb could you find in the kitchen. Not a Labrador hairball could you find on the floor when he was done. Oh he was fine in that regard! Oh, but if only he could have been a friend. If only he could have been loyal.

Several years later I met Steve. My two young children didn't seem to notice he was blind. My parents met him, liked him immediately, and didn't care. Neither did my friends. Most of them had been guide dog trainers too. We had a small wedding ceremony in Jamaica. We call it our "family-moon" because my children and all four of our parents spent most of the week there with us.

So here we are ten years later. Steve can mow the lawn, but I prefer it when he doesn't. I like a lawn to look mowed when it's done. I'm fussy that way. Steve can go to the corner store for milk - he walks. It's too close to drive anyway. I should walk there with him. It's true, he is not the neatest *roommate* I have ever had. He fails to see the crumbs on the kitchen counter and yes, what with three dogs, more often than not there are Labrador hair tumbleweeds everywhere, even after he vacuums. I am fussy. But that is my problem, not the fact that my husband can't see. I mow the lawn now, but in exchange for taking on that chore, I've got a true friend. I've traded crumbs on the kitchen counter for loyalty. I've left the life of a single Mom behind for a life of adventure with a man who's taken me to San Fransisco, Jamaica, London, Helsinki, Milan, Venice, Hawaii...

As for Steve, he traded his days as a bachelor for life with a fusspot and her two teenagers. Can you imagine? A fusspot and not one, but two teenagers!

Yes, Steve is blind. And borrowing these words from Jane Eyre: "Reader, I married him."

Cross-posted on Planet of the Blind