This article is from http://www.ddc.ohio.gov/Pub/DDSummer03.pdf

John Hockenberry, Dateline NBC reporter and award-winning journalist, presented the opening keynote speech at Solidarity 2003. He urged people to “get their stories out” to broaden disability awareness. Frequently humorous, he kept the audience laughing throughout while delivering a talk rich with meaning and insight. “I define disability as a window,” he said. “It’s a window on culture. It’s a window on what humans are capable of.” He said he’s attended disability-related conferences in years past, but found that the wheelchairs he saw then were all the same, with identical technology. Hockenberry uses a wheelchair.

“What you notice here (at Solidarity) is that there are so many different pieces of equipment,” he said. “Vehicles, gadgets—‘Hey, look what I can do,’ or ‘Hey, look what I’ve figured out,’what’s for sale, what’s available.”“It shows that our stories are coming to the fore,” he said. “We’re landing on the beach; we’re on this big Mayflower ship, and man, we are at Plymouth Rock! ”He described his morning ride to the airport and an exchange he had with a limousine driver after transferring from his wheelchair to the vehicle. “So I put this in the trunk?” the driver asked, referring to Hockenberry’s wheelchair. He told the audience his thought: “No, let’s just leave it here,” he said. “I need to travel light. Are you available to carry me in the city of Columbus all day?”

“In the Third World, it takes five seconds to gather 30 people to
take you anywhere,” he said. In the U.S., “People don’t necessarily like to break out of the world that they’re in,” he said. “It’s very individualistic. It creates barriers that don’t exist in other cultures.”

“It always amazes me when people look at me and don’t see an integrated person with a chair,” he said. “I think a lot of us project in our day-to-day lives that we are completely at one with this disability experience, and we hope it translates,” he said. “We hope that people get it.” He thinks Americans without disabilities might feel more comfortable if they thought of themselves as people with disabilities who are just away from their chairs. Hockenberry described his experience of being hit by a bus in Chicago as he crossed the street using his wheelchair. He was safe, but his chair was crushed. He still remembers how he mourned for his wheelchair’s hurt, because it is a part of him, and his life.

Observing a disability isn’t the same as having one. The experience of having a disability is very different from simply observing someone with a disability and thinking that the experience will not be yours, he noted. “Experiences that bond a people are culturally significant,” he said. Some of the experience is only viewable by those with disabilities, so it is our responsibility to bring those stories to the rest of society, he added. Another aspect is that people in society make judgments based on small amounts of information. With more stories comes more information and a chance for those judgments to be revised.

“This experience is a rich experience,” he said. “It’s not a dead end. ”The stories must come out, he said, “That we are in the community, we are part of the community. It’s not up to others to let us into the community. We are already here.”


Quarterly
SUMMER 2003
Publication of the Ohio Developmental Disabilities Council bringing
disability issues and accomplishments to the attention of Ohioans.

This resonated with us in many ways. I encourage everyone read Hockenberry's book Moving Violations about his experiences after a car accident when he was 19. I think the individuality issue he speaks of speaks to the variety of equipment one finds people with disabilities using today. It is a double edged sword. Drew also was in a car accident after his illness and inability to walk. His car rolled over several times with him in it. It landed with him upside down, seat belt on. He barely had a scratch when my mom and I picked him up. It happened less than a year after I started dating him. Can I tell you how scared I was? You have no clue. And we were just dating then. A couple yrs later the pressure sores happened and we were engaged. Can we say someone has some cat biology in his system? I would add that those of us who are live in family members of people with disabilities are in limbo between being observers and participants in the disability experience. Many of our choices in life are thinking as someone who has a disability even when technically we do not have them ourselves. We must think as if we do. It's like we have two brains. One that thinks as a person in a wheelchair, one who doesn't have to. That's a story to be told, too. I guess here :)

I Married Him Anyway. I shamelessly cut and pasted this because I can't figure out how to make a link list on the side of our blog. I'm working on it. Really like this blog article... I too do not have the neatest roommate but neither am I the neatest roommate ;)

Planet of the Blind January 06, 2007
He's Blind. I Married Him Anyway.

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."

Poor guy. What was he thinking?

So it's our anniversary today! Thank you to everyone who sent us cards and well wishes :) We went to Monterey this weekend to celebrate. It was a great weekend to be there except that it was the motorcycle race weekend, too. Everyone in our hotel had come for that. Literally, we were the only people who had not come for the race/parade. The guys next door were really loud. They kept Hannah awake Friday night. So that took a little of the romance away from the otherwise romantic inn we stayed at. But that was okay because the hotel was very accessible and centrally located for restaurants, the ocean, aquarium, etc... Drew's parents reserved the Victoria Inn (www.victoriainn.com) for us. Thank you Tom and Mary! It was a very pretty (as you can see from the photo) and comfortable place to stay. They had a complimentary wine and cheese "tea" in the dining area in the afternoon, too. It is owned by Best Western (though you'd never know it from its appearance) so it's not too expensive either.

We went to the Monterey Bay Aquarium on Saturday. We both hadn't been since we were like 10. We got tickets at the hotel which saved us waiting in the massive line. Well, Drew gets to go to the head of lines anyway. Fortunately, he gets in for about $10 less than standard adult price. Hannah got $2 for being a student. It's normally $25/per adult! The only problem was getting into the aquarium was a steep hill. It was packed but it always is. Drew was able to enjoy all the exhibits, including the touch pools. You could touch starfish and sting rays. We esp liked the jellyfish and the shark exhibits. We couldn't get any photos of the sharks though. The featured exhibit was about otters. That was hard to see because there were so many people. Hannah esp liked the sardine tanks that were in a circle above your head. We found a place with smooth pathways in Pacific Grove (next town down the street from Monterey) and decent parking. That place had a great view of the ocean. Our hotel room had a small view of the water on the balcony. We found three good restaurants to recommend. The first was Hula Grill on Lighthouse Blvd. It was a fun Hawaiian place for a casual dinner. Drew had a cocktail that came in a Tiki God head glass. For lunch after the Aquarium we had Thai food at Amarin. It's right next to the Aquarium in one of the old cannery buildings. The chicken satay and spring rolls were yummy, esp the sauce for the rolls. Then we had a romantic dinner at Loose Noodle Italian restaurant, also on Lighthouse Blvd. Hannah had her standard gnocchi (which was delicious). Drew had pesto cannelloni that he really liked. We had a connoli for dessert that was soo good!! We had planned to hit Big Sur on the way home (about 30 miles out of the way) but Drew was exhausted since he slept badly Saturday night. He promises to take Hannah before the summer is over since she has never been. We had a great time in Monterey :)

July 4th Photos from Treasure Island~ We went with Peter and his girlfriend, Michelle, to Treasure Island to see the Pier 39 Fireworks display. They moved in to their apt in San Francisco this week. The fireworks display didn't actually happen at Pier 39 but over Alcatraz. Don't know why they changed it. It wasn't foggy around the city at all. I thought I had a secret about Treasure Island being the hidden best place to see the fireworks. I found this out because I stayed on the island with a friend back in 2001, when I first moved to the Bay Area. I guess since then others have discovered it because it was packed! We got there early so getting in wasn't an issue really. Getting out was a different story! So many ppl were double parked and the road out is only one lane. Drew and I got out and were home within an hour. It took Peter and Michelle 90 minutes to get home to San Francisco! Poor things. I felt bad. But I think we had a good time. We saw the sun set behind Alcatraz and dusk settle over both the Bay Bridge and Golden Gate. I love when they turn the lights on the Bay Bridge because it looks like a string of pearls. We had a great view of the city. You can see the port of SF, Trans America and Fisherman's wharf in the last photo. Hope everyone had a happy, safe 4th!