Letters February 2013

Kudos on Buyer’s Guide
Congratulations on making what could have been a boring infomercial into an interesting, information-packed issue [December 2012 Consumer Guide]. And I loved the plug for my book. Thank you!
Bob Samuels
Piermont, New York

Access: Back Seat?
Between the lines of Tim Gilmer’s essay [Bully Pulpit, “Compensatory Progress?” Dec. 2012] was a quite remarkable and consistent failure of each of the businesses [hotels, rental car] he interacted with to provide the accessible accommodations they had promised with his reservations. After he strongly advocated for an acceptable alternative, they were provided, but what about those who are not able or not comfortable in advocating aggressively?

I’ve been in the disability rights/access field for over 30 years and have actively written and advocated for disability access in the development of state building codes/federal access guidelines. What I see happening is an ever-increasing attack on the rights of people with disabilities and reduction in access within the built environment, even after over 40 years of access codes and regs in California (we were one of the first and one of only five states that had specific access codes when the ADA was adopted in 1992).

Currently one city in Marin County has over 35 complaints about access code/regulatory violations that are at least two years old and haven’t been resolved. I could point to any city/county throughout California (or any other state for that matter) and show you access violations. The problem is overwhelming and our state attorney general has determined that she will not take on any disability rights cases. And the U.S. Department of Justice only takes on major cases because there would be no way for that office to resolve the great number of cases. If you expect our elected officials to do something about the problem, don’t hold your breath! They aren’t interested, because supporting the rights of people with disabilities won’t get them re-elected.

At this point, I’m not sure what the answer is, especially since the disability community is now fighting to maintain critical basic services like in-home attendants. Access has taken a back seat.
Richard Skaff, Executive Director,
Designing Accessible Communities
Guerneville, California

Mark O’Brien Revisited
I discovered Mark O’Brien [“Sex Surrogacy and Disability on the Silver Screen,” Nov. 2012] through an earlier video documentary about his life called Breathing Lessons. I had ordered the video for the CIL where I am the executive director. My intention was to use this film as an icebreaker for a support group for individuals with disabilities who had expressed an interest in discussing and sharing their sexual anxieties, interest and fear. After seeing the video about Mark’s experiences, I was sure that the video was perfect, well almost perfect. For some it may have been a little too real, a little too honest.

Fast forward to 2012: I’m sitting with some friends in one of my favorite movie houses watching trailers when I see images of Mark O’Brien and the voiceover describing his journey in experiencing his sexuality. I was in disbelief at first. Was this film really about Mark O’Brien? I felt confused and angry as I realized that the audience was giggling over Mark’s first sexual encounter. I felt a mixture of anger and humiliation for him and for myself as a woman with a similar disability.

As I write this, The Sessions hasn’t made it to Memphis yet, but I’m glad that Mark’s essay is now a feature film. I will definitely see it and I hope that it will be a positive experience. I know that I will be sure to talk with some of my friends with disabilities to get their opinions on the movie. In the meantime, until I see it, I will remain cautiously optimistic that the filmmakers captured Mark’s essay on film.
Deborah Cunningham
Memphis, Tennessee

Spirits Lifted
Thank you for the wonderful article [“Dimestore Millionaire, April 2011]. Sometimes I get really discouraged about finances. This article provided many new ideas, as well as tried and true ones. I am glad I found this website. You lifted my spirits.
Ruthella White
Everett, Washington

Phantom Pain Research?
I’m a bi-lateral above the knee amputee, and my Lenny and Riggs are both 6 inches long [Bully Pulpit, “Adaptathon,” Oct. 2012]. During rehab I saw an NM magazine and subscribed to it. All this happened when I turned 65 and retired from being a barber since I was 17. That was 10 years ago. I spent my whole career standing up and now it’s all sitting in a wheelchair.

Even though I’m an amputee, all my gimp buddies have spinal cord injuries, and I thank God all I have is a couple of “flesh wounds” and that I was in such good shape with upper body strength. I was a gymnast in school and could still walk on my hands and do front and back flips when I was 65 — I didn’t realize it was prep for my flesh wounds.

I struggle with phantom pain, and my doctor is treating it with pain meds that I wish I didn’t have to take. I never know when it’s coming or how long it will last. Doctors love to publish papers about how much they know, but they don’t write about what they don’t know. My doctor tells me any research on phantom pain is discontinued because they can’t get enough subjects to volunteer. Do you know of anyone who has done any work on this, or do they need volunteers? I’m ready for any tests out there.
Modesto Chavez
Gresham, Oregon

Support From Little Ones
I wanted to thank you for your column on the loss of your left leg, Lenny [“Adaptathon,” Oct. 2012]. I have been rooting for you since you first brought us into your struggles with the unanticipated infection. I can so easily picture your grandson Cooper bringing you tea. I have 10 little ones, and each one approaches my paralysis and wheelchair with a nonchalance and tenderness that nourishes. If their love, like Cooper’s, could heal, we would be running marathons.

I have called my legs Flopsy and Mopsy since my onset of transverse myelitis in 2005. Flopsy and Mopsy are heavy, and “leg management” is a big part of my day and my active lifestyle. Mopsy, my right leg, is particularly unruly, and due to a fall last year, she broke in two places. But I still love my “special leg,” although it is now crooked at the knee. Your words made me appreciate her more, and, to embrace, ever more fully, that tender love of the little ones who surround us.
Cindy Ranii
Pasadena, California

Life Goes On After SCI
I want to share with you a story about Luis Peña. Although I do not have any training in the medical field nor have I dealt with anyone with a spinal cord injury before, I began to work as Luis’ caregiver not long ago. In October 2007 Luis was involved in a rollover accident while on duty as a border patrol agent. He was chasing a car packed with illegal drugs and the next thing he knew he woke up in a hospital bed a quadriplegic, unable to move anything lower than his shoulders.

Luis has lived quite a life, and through working with him only a few short months I have had the joy of hearing some stories. How at a young age he became a firefighter, aided in 9/11, became a dad to two beautiful daughters, 4th degree black belt. But he didn’t want his story to end there — he was driven to still make a difference even after that fateful day in October. Luis invented an Xbox controller so that quadriplegics and others with limited use of their fingers can still find enjoyment in playing games with friends [Xbox 360 LP Pad Game Controller; www.lpaccessibletechnologies.com]. And with his launch of the controller, he celebrated by skydiving. How awesome is that? He has shown me that even with a traumatic event like becoming paralyzed, this doesn’t mean that your life just stops. You see the ocean from a different view, but everything is still beautiful.
Melissa Valdez
Casa Grande, Arizona

Correction
The article “Changing Conditions Means Changing Cushions” [December 2012 Consumer Guide] provided incorrect contact info for two companies. The correct information is:
• ROHO cushions: www.therohogroup.com; 800/851-3449 or 618/277-9173
• Jay Cushions (Sunrise Medical): www.sunrisemedical.com;800/333-4000 or 800/300-7502

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