United Spinal News



gary-karpSCI Hall of Famer Joins United Board

Bringing up Gary Karp’s name in the disability community is akin to talking about Joe Montana or Vince Lombardi with a bunch of football fans. With over 40 years of disability education, advocacy and leadership on his resume, Karp’s legacy is known far and wide. Heck, he was even inducted into the SCI Hall of Fame in 2007. Karp will now bring his expertise and insight to United Spinal, as the newest member of the board of directors.

Karp, 61, comes to United Spinal on the heels of a highly successful 11 years where the Christopher and Dana Reeve Foundation sponsored him to educate people working with and around disability about how best to work with the SCI/D community and people dealing with new injuries. During that period, Karp spoke at 70 universities and 25 rehab centers and helped thousands of future professionals, while also honing his own understanding of disability.

Despite ending his affiliation with the Reeve Foundation, Karp continues to speak, write and train others about disability. His books, Life on Wheels, From There to Here and Disability and the Art of Kissing, are available online and remain must reads years after publication. At the root of much of his work, is his gift for telling stories and his understanding of their power and potential to change the way others think about disability.

“I’ve always tried so hard to tell my story in a way that gets across the universal lessons of disability, that human beings are adaptable in our nature and everybody wants to find their way to be OK with themselves and what’s possible,” he says. “It can’t be a matter where people with disabilities are seen as remarkable individuals, it has to be a matter of everybody getting a shot and believing everybody has the potential.”

Karp conveys that message in all of his efforts, and is looking forward to delivering it via United Spinal’s advocacy efforts.

“I think that through our advocacy we can help the legislature by having conversations to help them get their heads around the new frame of disability and get over all these old ideas — that they are taking care of unfortunate people, that the disabled are a burden — it’s a new world where we want to invest in independence and what is actually possible without having to be inspirational heroes to do it. The chance to get that across to legislators and the broader population is really exciting.”

In addition to helping bring about that cultural shift, Karp is eager to work on funding for complex rehab technology, addressing how short rehab stays have become and improving employment opportunities for people with disabilities while also helping employers better understand how to work with people with disabilities. “Very early in this process I set my sights on making myself a value to employers and that meant I had to go beyond mobility and start learning about broader disability.” One outgrowth of that process is Real People, Real Potential, a video training series specifically geared to helping educate workplace cultures about disability.

Working on a board will be nothing new for Karp. From 2004-5 he sat on the board of directors for the National Spinal Cord Injury Association. During his involvement with NSCIA he served as the executive editor of SCILife, the organization’s newspaper. He has also been a regular contributor to NEW MOBILITY.

Karp was born in Detroit, Michigan, but currently resides in Tempe, Arizona. He has been living with a T12 SCI since 1973 when he fell from a tree at the age of 18. For more information on his speaking, books or Real People, Real Potential, visit his website www.moderndisability.com.

finn2A Farewell to Our Friend Finn

We lost a great friend and a powerful and unique voice Jan. 31 when Finn Bullers passed away from complications from Charcot Marie Tooth disease, a rare neurological disorder. Bullers, 52, leaves behind two children, Alora and Christian Bullers, and a long and impressive record of advocacy for people with disabilities.

Bullers spent most of his life as a reporter, starting as the editor of the Iowa State Daily in college, and moving on to stints with the Ames Tribune, Bismarck Tribune, the Dubuque Telegraph Herald, the Quad City Times and the Kansas City Star. He stayed on the desk as long as his disease allowed him, and when he could no longer work full or part time, he turned his reporting skills to exposing the problems facing people living with disabilities. Like any good reporter, he knew the tough questions to ask and he often knew the answers before he asked them. He was never afraid to challenge authority when he saw it treating people unfairly and he always had solutions.

He brought a relentless approach to fighting for a number of key advocacy issues, including preserving access to complex rehab technology, ratifying the Convention on the Rights of People with Disabilities and expanding Medicaid in Kansas to include greater in-home care he and other Kansans desperately needed. He also fought to get governments to adopt more modernized wheelchair accessibility signs.

In honor of his advocacy efforts and the genuine zeal with which he pursued them, United Spinal Association named Bullers its 2014 Advocate of the Year. He was presented with his award at United Spinal’s 3rd Annual Roll on Capitol Hill, legislative and policy conference in Washington, D.C., June 22-25, 2014.

“Finn Bullers was a courageous and tenacious advocate, both for himself and others with disabilities,” said United Spinal President James Weisman. “He used his writing skills to promote independent, community living for all who need attendant care. He was a staunch proponent of integration, self-determination and self-management.  His presence and participation will be missed by Kansans with disabilities, the members and staff of United Spinal Association and people with disabilities everywhere.”

As a member of United Spinal’s Kansas City chapter and a policy advisor for the chapter, Bullers was a shining example of how one advocate’s voice could break down barriers and spark positive change on the local, state and national level.

Memorials may be made to his children’s college fund; Sisters, Servants of Mary (who helped care for him for many years); the Society of Professional Journalists Education Fund; and/or the Greater Spinal Cord Injury Association of Kansas.

Handizap inventor Josh Smith was surprised his simple idea has already garnered an award.
Handizap inventor Josh Smith was surprised his simple idea has already garnered an award.

A Touchscreen Solution for Quads

Touch screens are the future and they’re everywhere, and if you’re a quad with limited or no hand function they can be a conundrum. Virginia quad Josh Smith has solved the conundrum with the invention of the Handizap, a slick little stylus users can slip onto their pinky to make using touch screens easier.

Smith introduced the product, originally branded the Sixth Digit, via a Kickstarter campaign last March and quickly raised over $2,000 to put the product into development. Late last year backers received the promised Sixth Digits. Smith has since rebranded his product as Handizap, and now sells it through handizap.com. For $30 you get two Handizaps, two replacement tips and a carry bag.

The Handizap
The Handizap

In early February, Smith was recognized by Governor Terry McAuliffe with Virginia’s 2016 STEM

[Science, Technology, Engineering, Math] Catalyst Award for his invention. “I was very surprised since I didn’t even know I was being considered,” he says. “The chief wonder officer of the Science Museum emailed me Friday saying he had some great news and was going to call me Monday. When he told me I won the award I was really excited. It was definitely a great surprise.”

Smith thinks the success of the Handizap is just the beginning. “We’re hoping to either develop more products for the disabled community or offer products we think could help make their lives better,” he says. “We also want to be a resource for people that want to create products.”


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