Communities Transformed by Individuals

Web Development inMotion

Volume 19 · Issue 1 · January/February 2009 | Download PDF

by Élan Young

The Amputee Coalition is lucky to have its share of volunteers who are willing to support the organization’s outreach efforts. These trained volunteers have proven their muscle in the field and have taken official roles as regional representatives, Volunteer Outreach Team (VOT) members and certified peer visitors, participating in a host of Amputee Coalition-sanctioned activities. But one need not be an official volunteer to engage in effective types of outreach. Although only official volunteers represent the Coalition, anyone who has been helped by the organization can reference the Amputee Coalition and spread the word about the organization. At the core of this effort is the goal of increased visibility – for amputees and for the larger community of people with disabilities.

Random Acts of Outreach

Communities Transformed 01Members old and new, or anyone with a desire to share the story of their amputation and recovery with others, can have a positive impact in their community. Here are some of the ways people with limb loss can reach out to others.

  • Attend a support group and offer to help its leaders.
  • Start a support group if one does not exist in your area.
  • Help bring a peer visitor to speak at a support group.
  • Tell your story on the Amputee Communicator Forum.
  • Advocate for more accessibility in public places.
  • Let teachers know about the Limb Loss Education & Awareness Program (LLEAP), a downloadable curriculum that helps address the social stigma of children with disabilities.
  • Talk to all of the medical professionals in your life, and don’t assume your prosthetist or physical therapist already knows about the Amputee Coalition. Offer to have a general information packet sent to them.
  • Share your story with your church congregation or members of a community organization.
  • Share your story with the media. You can reference how the Amputee Coalition has helped you and provide the toll-free number and Web site.
  • Approach other amputees you may meet in public places. As a fellow amputee, you are a peer. Tell them your story and ask them if they’d like to share their story. Tell them about the Amputee Coalition if they don’t already know.

“Any way that helps increase visibility for the Amputee Coalition is something that can help a potential amputee down the road,” says Charlene Whelan, health educator for the Amputee Coalition. “If you step forward with your story more publicly, you have the potential of helping another amputee find the Amputee Coalition and get the support that we offer.”

All amputees are a part of the larger community of the roughly 1.7 million amputees. Telling your story makes the entire amputee community more visible and contributes to normalizing limb loss. Whelan notes, “It is easier for a new amputee to adjust after amputation and move into the phase we call ‘normalizing’ if society has achieved a greater degree of acceptance.”

Another nice thing about community outreach is that it can be fitted to individuals’ strengths and desires. Just as novice outreach volunteers can engage in simple acts of outreach by striking up a conversation, so too can volunteers devote their time and talent to spreading the message and mission of the

Amputee Coalition. Many of Amputee Coalition’s volunteers are dedicated, talented people who go above and beyond. These amputees are just a few of them.

Supporting Role

Communities Transformed 02When Rose Bissonnette attended the peer visitor training at the 2003 Amputee Coalition National Conference, people recommended that she attend a support group. She kept saying, “We don’t have one in my area of Massachusetts.” They responded by saying, “Well, what are you going to do about it?” With this gentle chiding from her fellow conference attendees, Rose began the labor of love that would develop into one of the most successful support groups in the country.

Now a member of the Amputee Coalition’s Volunteer Outreach Team (VOT), Bissonnette’s approach to community outreach is grounded in what’s practical. When it came to starting a support group, she consulted with Amputee Coalition Regional Representative Charlie Steele, who also sits on the Amputee Coalition Board, and with Richard Nickle, a fellow peer visitor trainee and president of the Amputee Support Team of Central Pennsylvania, based in Philadelphia. She talked with other volunteers at her town’s commission for people with disabilities. Finally, after weeks of researching, planning and talking, she decided she had enough information to go forward.

Bissonnette insisted upon finding a meeting location that met strict conditions: First and foremost, it must be wheelchair-accessible, with an accessible bathroom; second, it must be available on the same day of the week and time every month.

When she got the call from a nearby hospital approving the use of a conference room that met these conditions, she went to work on publicizing what would eventually become a group. The first month, she had one attendee. The second month, she had two. On the third month, she was about to pack up early since she figured the pouring rain outside would keep most people away, but in came three people who had driven from over an hour away. That’s when she knew she would have to keep it up.

Bissonnette also considered the group’s vision and purpose before launching headfirst into it. To her, a group needs to consider whether it wants to be a social group or a place for emotional support and information. In her case, she felt that offering both would be a boon to the amputee community.

Today, Bissonnette’s support group is a registered 501(c)(3) nonprofit with a board of directors and a steady group of attendees. In fact, demand was so high at her group, with people driving great distances, that she and her core supporters arranged a pilot program for another meeting on a different day of the week in a different area of the state.

To celebrate their success, both groups met midway – in donated hotel space – for a dinner and dance fundraiser. One person’s vision and hard work can have a huge payoff. A dance hall filled with over 100 celebrants is proof enough.

Redefining the Focus

Communities Transformed 04Three years and 15 operations after a traumatic accident led to her below-knee amputation, Shari Caradonna was still unable to return to the work she loved as a physical therapist, a career she had held for 26 years.

She remembers a peer visit that brightened her whole outlook about the process she was about to go through. “It was incredibly frightening,” she says. “I asked her to walk back and forth in the room, to take her leg off, just so I could see what it looked like.” The peer visitor offered her encouragement through words, but all Caradonna cared about was that the woman was walking. “It changed everything for me, decreasing my anxiety and fear,” she says.

As the shock of amputation wore off, and with time to heal, Caradonna eventually learned more about the Amputee Coalition and its mission. She heard about the peer training program, and decided to give it a whirl since she was brimming with desire to get back to helping others one-on-one. With her enthusiasm bubbling over, she attended the first training she could, driving from her home in Long Island, New York, to Allentown, Pennsylvania, because she didn’t want to wait another several months to attend one closer to her.

There, Caradonna was inspired by her trainer, Charlie Steele. He always urges his trainees not to sit around and wait for the phone to ring with referrals for peer visits. He suggests that they begin by approaching the hospital where they were treated and branch out from there. Within days of the training, Caradonna called him, asking for more ideas. Caradonna was frustrated that she couldn’t return to her work as a physical therapist, but when she became a certified peer visitor she realized that she could still connect with others and help them realize their full potential.

With Steele’s guidance, Caradonna reached 10 of the 12 hospitals on Long Island within 6 months of her peer training. She’s conducted 12 peer visits to date, even going far out of her way to establish contact with amputees she hears about in her community. Steele notes that Caradonna stands out because of the number of volunteer hours she puts in. “If the Amputee Coalition had a Shari in every community, we would not leave any amputee behind,” he says.

Testament to this is a recent peer visit that took a long time to arrange. Someone told Caradonna about Laura, a woman who had lost her left leg above the knee in a traumatic motorcycle accident. Caradonna tried to connect with her, but the acquaintance didn’t think she would be able to get Laura’s phone number. Then a friend called her out of the blue and described a woman who used to cut her daughter’s hair and had been in an awful accident. It didn’t take Caradonna long to realize they were talking about Laura. With a few more phone calls, Caradonna was able to contact the owner of the salon, who replied: “I don’t think she wants to talk to anyone right now.” Caradonna pleaded with the owner to pass along her number to Laura, but she knew that her request would not be honored. Some time later, Caradonna met a third woman, also a client at the salon, who proceeded to tell her Laura’s story. It was just too much of a coincidence, and the next thing she knew, she was speaking face-to-face with the salon owner. She pleaded again, explaining how important the peer visit would be but received the same response. Finally, the receptionist, who overheard the conversation, decided to call Laura directly and find out if she would like to speak with Caradonna. “She came back out and told me that Laura would love to be contacted,” says Caradonna. “Tears started streaming down my face.”

The peer visit turned them into fast friends and was an important breakthrough for Laura, who was unable to move forward with therapy because her insurance refused to foot the bill. Caradonna made a few phone calls and set Laura up with her prosthetist, and later a physical therapist, and both agreed to treat Laura pro bono. When Caradonna saw her walk for the first time in 4 months, she shed even more tears of joy. “It’s just amazing to be able to help people like that,” she says.

Small Town, Big Impact

Communities Transformed 03Woody Thornton was busy reaching out to amputees even before he learned of the Amputee Coalition. After 15 years as an amputee, Thornton’s Christian faith led him to start a support group that would help uplift fellow amputees. He’s now a member of the Volunteer Outreach Team, and, in a little over a year, he has expanded his role from being an active peer visitor to a representative of the Amputee Coalition, where he’s spoken to local amputee support groups and attended health fairs. He’s also traveled to represent the Amputee Coalition at larger events such the American Diabetes Association’s Diabetes Expo.

Thornton sometimes finds it easier to share the Amputee Coalition’s message than to find people to share it with. However, this is not necessarily due to living in a smaller community. “It can be challenging, convincing healthcare providers or educators about the importance of peer visits,” he says. “Sometimes it helps when they have a personal connection with someone with limb loss.” Certainly, Thornton’s proactive approach helps him overcome these setbacks.

Being in a smaller town, a lot of his contacts come from family and friends who hear about someone who had an amputation. “Even still, I think I probably get most of my contacts just from wearing shorts for most of the year,” he says, noting that his Auburn College tiger-striped prosthetic socks draw a lot of attention from strangers as well.

“You do not have to be a great speaker or the most knowledgeable person to reach out to other amputees,” he emphasizes. “You just need a caring heart.” Thornton believes that amputees who reach out in their communities will be accepted as peers by other amputees because of the common bond that amputation brings, no matter how different the individuals’ stories. His experience has also shown him something of a positive feedback loop. “It is easy to think that you are only part of a small group,” he says. “But when you start seeking out other amputees, you realize that there are many people who share a similar experience with you.” Being committed to community outreach has taught him how broad the scope of limb loss truly is, even in a smaller community.

There is no doubt that the mission of outreach-oriented organizations like the Amputee Coalition is expanded in scope and reach when its body of members feels empowered to spread the word about the programs and services that helped them. While a number of individuals have committed to being visible, active volunteers in their communities, this need not intimidate new or shy members. “Small things do count,” says Whelan, “Just think what small things 1.7 million people could do to help the nearly 200,000 new amputees per year find the resources they need to achieve their full potential after amputation.”