This post is part of the series 14 Questions
, featuring interviews with disability advocates regarding their work and insights into the Complex Rehab Technology (CRT) industry. In our latest post, Numotion Director of Advocacy Strategy, Justin Richardson interviews Debbie Myers,
President of the North Carolina Spinal Cord Injury Association and former Miss Wheelchair North Carolina.
Richardson: Our readers are always interested to learn how our interviewees joined our community. Will you please share with us when and how your injury occurred?
Myers: I grew up in Illinois and relocated to NC in 1993 with my job at Sprint. I’ve always been very project orientated and was working on a home remodeling project in the Fall of 2001. I was on the roof finishing some window trim painting when I slipped and fell onto a concrete patio. My accident on that pretty fall day resulted in an incomplete T12 level spinal cord injury. I am 18 years post-injury. Though this is a club I never expected to join, I have a very full and satisfying life.
Richardson: How was your initial rehab experience? Was it positive? Did you feel equipped to live with your injury once returning home?
Myers: Overall, my inpatient rehab experience was positive. I met some great therapists that I’m still friends with today. I do remember being very focused on what I had to accomplish so that I could go home. The doctor gave me a list of activities that I needed to meet in order to be released and I turned this into an action list or another project. I did struggle with the idea of paralysis and this “project” helped me feel like I still had some control in my new world.
I’m not sure I was well prepared for what to expect when I got home. In addition to not walking and the physical healing, I had to deal with the change in family dynamics, the loss of my boyfriend, job and home. I found outpatient rehab and the associated SCI support group very helpful. I still had a lot of questions about support, research and resources available to folks with SCI in North Carolina and nationwide. This time period led to the development of the North Carolina Spinal Cord Injury Association (NCSCIA).
Richardson: You are a former Miss Wheelchair North Carolina. Please tell us about that experience. Are you still involved with the organization today?
Myers: I became aware of the Ms. Wheelchair North Carolina (MWNC) program in 2005. NCSCIA was still a very young organization and I was looking for ways to outreach and expand our network. I thought the MWNC program would be a great way to meet people and share the NCSCIA mission. I was pleasantly surprised to be crowned MWNC 2005 and truly enjoyed the opportunities I had that year to develop new community relationships.
The Ms. Wheelchair America program is an advocacy program that recognizes women in wheelchairs and their achievements and accomplishment while in the chair. It provides an opportunity to advocate for your peers in the disability community. I continue to support this program both personally and professionally. I appreciate the opportunities it provides women to find their voice in their community.
Richardson: What was the origin of the North Carolina Spinal Cord Injury Association (NCSCIA) and how did you become involved?
Myers: NCSCIA was established to improve the support and resources available to the spinal cord community in North Carolina. We wanted to provide a sense of community. This need was being voiced by people with SCI as well as the therapists and case managers working with individuals and families with SCI. I am proud to say that I am one of the founding members of the organization and able to use my professional background in project management and customer service to aid in NCSCIA’s development. We are currently involved in our seventeenth year as a state chapter under the United Spinal Association.
Richardson: What are the main points of focus of the NCSCIA?
Myers: The mission of NCSCIA is to “Enable people to achieve their highest level of independence, health, and personal fulfillment.” The goals of the organization are centered on the key objectives of Support, Communication/Education, Information and Advocacy. These are reflected in our programs, website, community involvement, peer mentoring, support groups, adaptive sports, financial assistance programs, and social activities.
Richardson: What role have adaptive sports played in the growth of the organization?
Myers: Our interest and support in adaptive sports came early in our chapter development and has become a strong part of our base. Adaptive Sports are tangible programs that easily captures people’s interest and community support.
Quad Rugby was one of our early successes. When the Murderball movie came out, I received a dozen calls asking about the sport. We hosted a quad rugby clinic with the help of the Carolina Crash, a wheelchair rugby team in the Charlotte area. At the time, they were the only team in NC. Based on the success of that clinic, we were able to start another team, the Raleigh Sidewinders, which is based in the eastern part of the state. In addition to the continued support of the Raleigh Sidewinders, we also host an annual quad rugby tournament in Raleigh, the Raleigh Rumble. This year will be our fifteenth annual tournament.
In addition to quad rugby, we sponsor a wheelchair basketball team, the Triangle Thunder, host both spring and fall hand cycle clinics and co-host annual adaptive fishing clinics with the PVA.
With both sports teams, you see ability versus disability, competition, peer support, self-worth and community awareness, and education.
Richardson: The NCSCIA is considered to be one of the most successful chapters of United Spinal in regard to fundraising. Why has the NCSCIA been able to consistently exceed expectations in regard to corporate sponsorships and individual contributions?
Myers: The NCSCIA approaches fundraising with a commitment to friend-raising as well as funds. Community awareness and education are important to us. We actively grow and maintain our relationships with our supporters throughout the year through our community projects and activities.
For the event itself, we have a wonderful venue and program outline for the evening that includes an iconic location for the event, wonderful food, heartwarming speaker videos, and fun raffle and auction items. Our planning committee is very creative and committed and our volunteers are strongly vested in the organization. The NCSCIA videos are very compelling and share the heart of our organization. Our corporate sponsors and individual contributors can really see how their donations are impacting the lives of our SCI community and their families. Community leaders that have attended our function tell us this is “an event not to miss.” This year will be our thirteenth year for our annual fundraising event.
Richardson: One of the NCSCIA’s primary 2020 goals is to hold a Women’s Empowerment Conference geared toward a female member of the SCI/D population. What led you to focus specifically on women?
Myers: Many of our educational programs and adaptive sports clinics are based on the feedback from our community about their needs and interests. We have been very successful in meeting these needs and the subsequent programs have provided us a strong base to build from each year.
Based on the feedback within our community, the need for a women’s conference has been on my radar for several years. Only 20% of all people with spinal cord injuries are women, a minority within a minority. Females tend to struggle to find information specific to their needs and issues. It is our goal to reach out to these women and address the specific needs they have expressed in the peer groups and social media. Areas of concern include health care challenges, body image, aging, relationships, personal safety, domestic abuse, depression, work modifications, etc.
This empowerment conference will be a platform to provide education, resources and networking opportunities. We hope to expand the life choices for the women in our community and provide them the tools for self-advocacy initiatives.
Richardson: Beyond fundraising, adaptive sports, and the excitement around the upcoming Women’s Empowerment Conference, what NCSCIA accomplishments or programs best highlight the organization’s success
Additional programs include our support groups, peer mentoring, social activities and our annual conference, “A Day to Connect”. Past conference topics included Fitness and Nutrition with SCI, Emergency Preparedness, Self-Advocacy Tools and Self-Defense. We also collaborate with our community partners throughout the year and provide support at conferences, sporting events and speaking engagements. One of our newest programs is a Financial Assistance Program that was established to help with the unexpected and often urgent needs of individuals with SCI.
Richardson: What is the most challenging aspect of running a successful nonprofit organization?
Myers: The commitment of time, energy and heart that is required to keep the association successful can be a challenge but also what makes it very rewarding. Our community, our board, and our members are all busy people who care tremendously about our cause but also have multiple competing priorities. For a nonprofit to be successful it needs someone to develop close personal relationships with members, supporters and with community leaders. Our community is generous with their time, talent and treasure when it comes to supporting our organization. But the reality is that the needs often overwhelm our resources and it can be a balancing act to manage those needs with the available resources.
Richardson: What do you believe to be the most significant issues facing those with paralysis today?
Myers: I think one of the greatest challenges is learning to live with the secondary conditions that come along with paralysis. So many in our community deal with debilitating chronic pain, neuropathy, muscle spasms, skin break down, bowel and bladder issues, depression, isolation, etc. We talk about many of these issues in our support groups and peer mentoring sessions. There is not always an easy answer to these issues but the SCI peer groups do provide the opportunity to share and learn what others may be doing to help manage their individual challenges. Our goal is to provide resources and support so our SCI folks can learn to manage their personal challenges and integrate successfully back into the community.
Richardson: What are your thoughts on the current state of complex rehab technology (CRT)? What advancements would you like to see in manual and power wheelchairs in the future?
Myers: It’s encouraging to see the choices of equipment and innovations available in the marketplace today. However, it’s concerning to see the decrease with insurance allowable, thus limiting the choices an individual may have for specific equipment. My concern is for the end-user and the need for the safe and proper equipment for their daily use. We need to advocate for more accessible and affordable complex rehab technology which will increase independence and reduce the secondary complications that many people experience.
Richardson: When not consumed by the day to day requirements of running a thriving nonprofit, how do you spend your free time?
Myers: Every year I make the resolution that I am going to find a better balance between my personal time and NCSCIA commitments. I’m not always successful with this goal but I do enjoy spending time with my nieces and nephews, my dog Maggie and gardening. I have several raised beds and I spend a lot of time with them. One of my favorite gardens has the spring tulips and I love the mass of color they provide.
I also deal with chronic pain and I have a fitness and stretching routine that I’m very consistent with every day. I’ve recently joined a drumming class at the gym that’s physically and mentally refreshing.
Richardson: If your readers would like to learn more about your work and that of the North Carolina Spinal Cord Injury Association, what would be the best way for them to learn more?
Myers: I would encourage anyone interested in contacting me and/or learning more about NCSCIA to visit our website, www.ncscia.org or our Facebook page, North Carolina Spinal Cord Injury Association. We are also listed as a state chapter under the United Spinal Association. All these platforms provide information about our upcoming events, support groups, and ongoing programs. We look forward to meeting new community members!