Focus on the Positive
This is a very clever and well-formulated story
The goal should be, not to have a perfect world, but to not let all the annoyances, inconsiderate people, and outright assaults on our rights and humanness cause us to be in a constant state of anger, bitterness or despair. We need to keep moving forward, as little or as slowly as we can, sometimes even going backwards on progress while we try to focus on our triumphs (like all the side features in the story did) and find joy in those who do make our lives easier, in supporting others, and giving back.
We all must also unite, as summarized in the story. I have noticed so much recently the coalitions of different groups forming to become a unified force, a stronger, larger base. Yet, we have not been invited to this party. We are being forgotten and not included when they speak of civil rights: gay rights, racial and religious discrimination, and immigration reform. We must at least unite among ourselves. We have to support groups like United Spinal Association, be connected to what is occurring in our community and help each other succeed. Like a NAACP for crips. The National Association for the Advancement of Crip People: United for Criptopia!
Owner and Founder, PhotoAbility.net
Fort Lauderdale, Florida
Long Way to Go
Still a long way to go in Maine [“Criptopia”]: a neurosurgical office with heavy doors and no assist; other places the same, assuming all wheelchair “folk” bring their “caretakers.” Housing is a nightmare … but on the good side, some small towns are really making it work. No more excuses for historical buildings in Ellsworth, Maine. They just made extra sidewalks in the rear or sides of buildings, and the insides have accessible bathrooms. Just be sure someone else isn’t using it. Check the floor for feet! Ugh!
EDITOR: These “Criptopia” comments come from NEW MOBILITY’s Facebook page:
Not Much is Different
To be honest, after 46 years in a chair, I notice very little difference in accommodation in almost every venue. In fact, looking back, I think cafes and restaurants were more willing to “lend a hand” in accommodating me and my chair. I know cars were easier then, with the large two-doors available, now long gone.
Billy Lee Sharkey
St. George, Utah
I’m Not Complaining
How about a new accessible van that doesn’t cost $60,000? I have Criptopia day dreams that it doesn’t cost a lot of money to be a wheelchair user, but the reality is, it does! That’s just for a nice fitting perfect custom chair, not to mention all the other things that they have at the Abilities Expo, and it is great to go there and dream! That comes from a 52-year old T3 paraplegic who has been a wheeler almost 30 years. My life as a wheeler is great, and I love life, but the fact is that being a wheelchair user is expensive, and insurance doesn’t pay for much. I am not complaining, just stating a fact.
Bridgewater, New Hampshire
I Am Complaining
Well Alan, I am complaining. They do it because they can. I don’t see how they can be allowed to sell a damn cushion for more than the price of my recliner chair. I do six to 10 miles a day training in my everyday chair. It would cost me a pair of the cheap tires every two weeks. I use Schwalbe’s wheelchair tires, about $90 a set and they last me almost six months because I rotate them a few times before replacing is needed. I got my son new tires for his 27-inch touring bike for cheaper.
Inspired by Subway Protest
We are beginning the same process here in the Oakland neighborhood of Pittsburgh, Pa. It started with a complaint to the Department of Justice about a local Wendy’s [“Advocates Protest Inaccessible Subway Restaurant,” August 2013 News]. They closed up shop instead of complying. Now I have started a site called Accessible Oakland. I’ve been going business to business posting pictures of obvious non-compliance, like a step. My original estimate is 80 percent of the businesses along two main streets are inaccessible. One is a Subway restaurant. Good luck, Colorado!
I have spent much time in Florence with my scooter [“Tuscany’s Florence: The Jewel Awaits,” August 2013]. People are very accommodating, and much of the city is accessible, especially the art galleries, museums and Duomo. My daughter was married there in Medici Palace and I was fine. The cobblestones are a challenge and take a huge chunk out of battery life. Old elevators are sometimes too small for a scooter. Thanks for the article.
We’ll Get There
Excellent article, so many nuanced voices are part of this conversation [“Equal Acess: If Not Now, When?” July 2013]. I have my own stories of complaints filed, and always I scratch my head thinking this is a hospital or clinic and no one thought there might be a concern here with equipment, structure, lack of sensitivity, access? Sigh … we’ll get there, eventually.
I broke my foot three months ago and the local urgent care inside of a hospital did not have a radiologist read the film [“Equal Access”]. There was a very visible break. The urgent care people did not get back to me as promised. They refused to splint me correctly. I knew my foot was broken; I’ve broken it before. I am articulate, have a doctorate, yet am often treated as someone of below normal intelligence.
Caring is the Difference
Your August 2013 Bully Pulpit, “What Might Be,” hit the nail on the head. Most of us share the feeling of incredible anger and frustration with hospitals, doctors and others who continue to ignore the ADA. We, like you, have also known doctors and nurses who are saints, making unbelievable sacrifices each day to do their best for patients with disabilities.
Caring makes all the difference. As you’ve noted before, the most difficult things we can go through in life are bearable if there is caring and love in our lives. We’re lucky to have an outstanding internist who goes the extra mile and will come to our house after a long day. Most aren’t so lucky, and our hospitals, especially the rural ones — not familiar with disability — can be downright scary.
The negative emotions that erupt during these unnecessarily scary experiences and the lingering bitterness can get in the way of being an effective voice for change. I hope that more of us can learn to put aside the negative and become effective speakers. Good apples produce more good apples.
Beverly and Bryan Gingg
San Luis Obispo, California