United Spinal’s Independence Expos put consumers in touch with products, services and information that make aging or living with a disability easier and more manageable.

By Christofer Pierson

Independence Expo is fast becoming one of the highest profile ways for United Spinal Association to put into action the ideals expressed in its mission: to improve the quality of life of individuals with spinal cord disorders. It also enables United Spinal to share its 60 years of expertise in the disability rights movement with a whole new audience whose needs overlap with those of United Spinal’s core membership: the growing population of people heading into retirement years who want to be able to age in their homes.

Long Islanders had their first opportunity to attend United Spinal Association’s Independence Expo this past June, a little over a month before Orlando hosted its version for the third year. Altogether, more than 1,500 people visited the exhibit halls and attended workshops at Suffolk County Community College (Brentwood, Long Island) on June 26 and 27, and the Buena Vista Palace Hotel (Orlando) on August 7 and 8—about 600 at the former and more than 900 at the latter.

In each location, United Spinal President and CEO Paul Tobin welcomed guests with ribbon-cutting ceremonies before the doors opened on the first day of the two-day events. On Long Island, Tobin was joined by retiring Director of the Suffolk County Department of Handicapped Services Bruce Blower and his successor Frank Krotschinsky; in Orlando Orange County Commissioner Scott Boyd read a proclamation from Mayor Richard Crotty declaring August 7 through 9 Independence Expo Weekend.

Mission in Action

Each event featured a large exhibition space shared by vendors whose merchandise and services—durable medical equipment, service animals, health care products, accessible design—promise to improve quality of life for people with disabilities and a menu of workshops on subjects ranging from lifestyle enhancement to the national legislative agenda.

Long Island’s workshops, held in seminar-style classrooms, offered attendees the opportunity to get close to instructors. Peter Zarba of Accessible Vans and Mobility (avmvans.com) in Bethpage, New York, was able to get specific with answers to questions attendees of his workshop had. Zarba’s general message was that anyone who wants to drive a vehicle should be able to drive, given the right technology. He told a story about one client—a triple amputee— whose van was adapted with controls that were operable using just one foot. He was also able to encourage a middle-aged couple, the husband of whom was recently injured and was eager to get back in the driver’s seat again.

Jordan Silver, designer and founder of Ag Apparel (www.agapparel.com) delighted the women who attended her seminar on fashions for women with disabilities when she showed her stylishly versatile line of clothes. “Oohs” and “ahs” erupted from the originally skeptical group when Silver demonstrated how a pretty sarong-like evening dress unzipped all the way down in order to be put on like a robe. “Now that’s wheelchair friendly!” one attendee exclaimed.

Hands On Learning

Some workshops, like the one conducted by therapist Shelley Sidelman (www. yogabilityandyou.com), who offered a class on yoga and body work for people of limited mobility, were more interactive than others. Sidelman had her students stretching their arms overhead, rolling their heads gently on their necks, and deeply inhaling and exhaling. “You can definitely do this on your own,” Sidelman told her class. “I’m just giving you a little hint of what I do.

“Here’s the deal,” she said, pointing to her elbow. “Someone has a pain here, they don’t move it, it becomes like a broken wing. The important thing is to try to move it so the broken wing can heal.”

Sidelman’s session drew the interest of, among others, United Spinal member Martin Barker and his wife Debbie. The Barkers, who had come all the way from Yardley, Pennsylvania, to take advantage of the Long Island Expo’s relative proximity to their home, also sat in on sessions given by motivational speaker Ethan Ruby on the power of positive action and Senior Vice President Kleo King of ABLE to Travel on accessible travel by sea and air.

Orlando’s workshops were held in grander settings, more reminiscent of lecture halls. King and Travel Coordinator Mary Peterson easily filled the room with the Orlando version of the ABLE to Travel workshop. Based on the continuous stream of questions and comments from the crowd, the attendees were there not just for the chance to win a stuffed travel bag from Gillette.

Another popular workshop, in both settings, was offered on service dogs: In New York, Jessica Reiss and Lisa Moran of Canine Companions (www.caninecompanions.org/) and in Orlando, Janet Severt of New Horizons (www.newhorizonsservicedogs. org/), based in Orange City, Florida, demonstrated some of their animals’ amazing skills, such as picking up keys, or even transacting business at a bank or retail store. Reiss and Severt both noted one of the lesser known benefits of having a service dog, the social benefit of breaking down the wall between the person with a disability and the animal-loving public at large. Although interfering with a dog while it’s working is bad form, the experts stressed, most dog owners welcome the attention their dogs bring in idle moments—and the dogs seem to welcome it as well.

In the Hall

Many of the workshops were run by people who could also be found behind tables at the booths in the exhibition hall. Kristy Carter of Sportsability, a program of the Florida Disabled Outdoors Association (www.fdoa.org/) based in Tallahassee, gave an inspiring talk about the importance of all kinds of recreation to the health and wellbeing of people with disabilities. One of her audience members, Sandy Marzloff-Moore of Orlando, listened raptly as Carter listed activities for which adaptations are available for people with disabilities, then ticked off ideas for finding recreational opportunities outside one’s comfort zone.

“I just got married in November of last year to a wonderful man, who has been really great in accepting my disability and taking good care of me,” Marzloff-Moore said afterwards. “But it does take a toll on both of us. Up to now, I’ve never known how to get into a program of recreation or sports. There are activities that he wants to show me that I feel I can’t do. But now coming to this seminar, I feel there is hope out there.

“I’m looking for other things to do and that’s why I came back here,” she continued, speaking of the Expo in general. “This is my second year. This year I’m learning a lot more. I researched more on my own so I could come back here with more questions. Kristy was really great talking about Sportsability. They don’t tell you about this stuff outside. It’s like a hidden secret. I’m finding everything after opening one door after another.”

Jennifer S. French of Tampa was another presenter who spent time on the exhibit floor. The executive director of Neurotech Network (www.neurotechnetwork.org/), a nonprofit that promotes functional electronic stimulation systems for neurological disorders, French was the first woman to receive an FES implant to allow her to stand and walk, despite having sustained a C-6/7 spinal cord injury. She used the system to dramatic effect to begin her session on neurotechnology by standing up from her chair, taking a step with her walker and announcing she has quadriplegia.

“Our organization focuses on educating people with impairments, clinicians and care providers about devices and treatments that are available, and just tries to get the word out to people about what their options are,” French said. “Because believe it or not, a lot of physicians, occupational and physical therapists are not aware of the new technologies that are coming out and how quickly it’s changing.”

French is the subject of a film, To Have Courage, made by Brian K. Dery and Triple Knot Productions (www.tripleknotproductions.org/), which also had a booth at the Expo.

Entrepreneurship

Fittingly, considering the event’s theme, Independence Expo had a number of booths run by entrepreneurs with SCI. Earl Hielm of Port Charlotte, Florida, demonstrated his “indestructible” E-Z Pull Door Closer (www.e-zpulldoor.com) with all the panache of a reincarnated Billy Mays (as he himself was pleased to note). A simple rod-like device that hooks around any kind of door knob or handle, the E-Z Pull enables anyone to pull a door closed without having to roll over the threshold. And all for just $14.99!

Terry Darling, from Davenport, Florida, exhibited his Wheelchair-Accessible Recliner (wheelchairaccessiblerecliner.com), a high-backed, cushion-armed slip that a manual wheelchair user can back his or her chair into and lean against for relaxation. A threshold keeps the chair from rolling forward. Each recliner can be equipped with cup holders and electronic or manual controls to adjust the grade.

And Thom DeLilla, best known to Floridians as the bureau chief of the Brain and Spinal Cord Injury Program (which also had a booth in Orlando), had his Bottoms Up Bar (www.mybottomsupbar.com/) available to try out. For quads and paras with reasonable upper body strength, the Bottoms Up enables a person to go from chair to floor and back up in three quick and easy steps. “I love turning problems into solutions,” DeLilla said. “This idea was born out of my frustration over not being able to get on the floor and play with my children.”

This is just a small sampling of the vast amount of ideas, products, and information Independence Expo offered attendees looking to make themselves more independent and better able to handle life’s ongoing challenges. If you missed either of these events, consider coming next year. Check out United Spinal’s Independence Expo page (www.independenceexpo.org/) and watch future issues of Action for more information.

Christofer Pierson is managing editor.