In recognition of September’s Spinal Cord Injury Awareness Month, we’re sharing member perspectives on how United Spinal’s programs have impacted their lives. We are the largest disability-led non-profit organization dedicated to enhancing the quality of life for 5.5 M wheelchair users in the U.S., with over 60,000 members, nearly 50 chapters, close to 200 support groups and more than 100 rehabilitation facilities and hospital partners nationwide. If you or someone you love has been affected by SCI, please consider joining our growing community to take advantage of valuable resources and services that enhance quality of life and independence.
Edward Mitchell
Member of United Spinal’s Tech Access Initiative
Hometown: Cincinnati, Ohio
What advice do you have for someone who is newly injured?
My recommendation for the recently injured is to establish a timeline and follow it rigorously. My priority after being injured at 16 was to visit as many therapy centers so I could build myself up but also learn from those that have been living the life with a disability a lot longer than I. Secondly, I would advise do not rush driving or purchasing a wheelchair accessible van. There are so many nuances that one has to consider such as, wheelchair compliance, driver evaluation, & most notably the cost of a wheelchair accessible van. Rushing without having the necessary direction can be very hazardous because the cost of adapted driving equipment and a wheelchair accessible van can quickly surpass the six figures.
How would your life be different without technology?
My life will be immensely different if it wasn’t for this bit of technology. I started learning how to drive during college matriculation and didn’t complete all the training until I graduated my senior year. Once I achieved gaining my license and being able to drive without the driver evaluator or my parents I felt like a Phoenix rising from the ashes. This was the first time since the outset of my hit and run accident that left me with the disability that I was capable of going anywhere and undertakes anything without assistance or collaboration with someone else’s time schedule. Once having the independence of the open road it allowed me to explore opportunities such as working in professional sports as well as conducting road trips with my fraternity brothers Alpha Phi Alpha fraternity Incorporated.
What is the most rewarding aspect of getting involved with Tech Access Initiative as a person living with SCI?
The most satisfying feature of being part of the Tech Access Initiative is the collective of persons with shared experiences and limitations that allow us to establish our own Reddit style crowd source. By expressing our views and and sharing our achievements as well as disappointments. I feel less alone as I navigate living with a disability as I acquired mine later on in life at the age of 16. Tech Access members exchange essential advice and information including where to get reputable disability focused material, and how to locate innovative tech resources. TAG provides a safe zone in which individuals can share their feelings, concerns, and anxieties without fear of judgment or criticism.
Tiffany Poland
Participant in United Spinal’s Peer Mentoring Program
Hometown: Sacramento, CA
What advice do you have for someone who is newly injured?
Be good to yourself and don’t be hard on yourself about your spinal cord injury. Being Take your time learning about what type of injury you have. Ask your doctors as many questions as you have about your injury. Ask about peer support groups in your area as well as any online. Having a community that can help you find resources and connections in your area will be extremely helpful. I know having a community of peer support has helped me with so many issues I have gone through in the thirty-two years that I have been injured. It has helped knowing there would be someone in the spinal cord community who would probably understand what I am going through when I reach out for advice.
Tell us how United Spinal’s Peer Mentoring Program has changed your life?
I joined United Spinal’s peer support program during the Pandemic and finding a support program at that time was so helpful. The people I’ve met in the United Spinal peer program helped me feel part of another community online. Being able to discuss with the group what was going on in my life as a person with a spinal cord injury was so helpful. The group has been encouraging and helpful especially during times that I was in bed due to pressure sores. Being able to connect with other wheelchair users and people with different disabilities has been so helpful in making new friends in different states. It has also been helpful in building peer connections.
How would your life be different without peer support?
Without peer support my life would be very lonely. I say this because when I was first injured at fifteen years old, I was adamant that I wouldn’t have anything in common with someone else who had a spinal cord injury. I was so very wrong about not having anything in common with others in the community. I have some amazing friends that I met in peer support groups like the ones United Spinal offers. Having others to reach out to when looking for advice on health issues, relationships, and finding resources are ways my life is enhanced by people I reach put to in peer support groups.
Leonard Mayberry
Participant in United Spinal’s Pathways to Employment Program
Hometown: Needville, Texas
What advice do you have for someone who is newly injured?
I was an active human being with a beautiful life and not a problem in the world that I couldn’t deal with. Everything changed after my injury. But never give up on your dreams. You can use your experience to help other people with disabilities. I didn’t know anything about the Americans with Disabilities Act when I got injured. It’s important to learn what laws are in place that protect your rights and what accommodations you are entitled to as a person living with a spinal cord injury.
What is the most rewarding aspect of getting involved with the Pathways to Employment Program as a person living with SCI?
The Pathways to Employment group has been great – giving business plan support and even talking about location. I was thinking about cheap land outside Houston, but I got good advice that having a small central location for the fleet means I’m closer to the heart of the city and clients. The program’s team and peers have helped me persevere. You go to a job interview in a wheelchair, you can’t hide it. You go through 100 `no’s’ to get to one `yes.’ I’m the kind of person that the minute you count me out, you made a big mistake — I’m not going quietly.
Shannon Minnick
United Spinal Grassroots Advocate
Hometown: Silver Spring. Maryland
What advice do you have for someone who is newly injured?
It’s up to me and individuals like me to be out in our community advocating for ourselves. The biggest misconception of wheelchair users is that ‘we can’t’. They always see what we can’t do, and not what we can do. But I’ve done things in my life that i never thought I could do as a person walking and I’m doing it as a person who uses a wheelchair.
What is the most rewarding aspect of getting involved with United Spinal’s Roll on Capitol Hill?
Advocacy is not something you learn in a day. But as long as I stay connected to United Spinal I’m going to continue to learn more and grow with the organization. I’m a loud voice and i think it’s important for me to be out there speaking up for my community.
Mat Barton
New Mobility Magazine Contributor
Hometown: Portland, Oregon
What advice do you have for someone who is newly injured?
Everything gets easier with time. At first it’s going to feel like there is no way you can live like this, and it’s going to be very hard, and you will be sad over your loss. But each month or so it will get a little easier. And then the years go by and it’s not nearly as bad as you initially thought. I was very lucky to have someone reach out to me while I was in the hospital and he told me this, and he continued to check in with me and see how I was doing. I would reach out to the SCI community and seek help and advice from someone who has been where you are now. You’re going to make a lot of mistakes figuring stuff out and that’s ok. With time it gets better. I’ve been in a wheelchair for 10 years now and I still reach out to others when I have questions about something.
How would your life with a spinal cord injury be different without New Mobility?
I wouldn’t have pushed myself to create cartoons that deal with disability. The editors at New Mobility encouraged me to create comics that I would not have done on my own.
What do you most get from being involved with New Mobility as a person living with spinal cord injury?
A sense of purpose and an outlet for experiences I’ve had dealing with my disability. Some days can be real bummers, but sitting at the drawing table and making jokes about it is very therapeutic.
Karen Roy
Member of United Spinal’s Tech Access Initiative
Hometown: Baton Rouge, Louisiana
What advice do you have for someone who is newly injured?
If you find technology that will improve your heath and it is denied by your insurance provider, keep fighting. Don’t take no for an answer when it comes to staying healthy and improving your independence. Find any way you can take care of your body and stay vigilant using the technology once you obtain it.
How would your life be different without technology?
If I had not had standing frames and my robotic standing mobility device I would not have been wound and contracture free for the last 35 years of being paralyzed. Standing has improved all my bodily functions and improves my bone density.
What is the most rewarding aspect of getting involved with Tech Access Initiative as a person living with SCI?
Seeing the passion that is growing in the corporate world for inclusion of people with disabilities in the development of their products and services. In the past people with disabilities were an afterthought.
What future progress do you envision due to your involvement in the Tech Access program?
A world where people with disabilities are not just given access, but embraced by society as employees, customers, and the amazing humans we are. A future where people with disabilities do not have fight at every turn for equality.
Ashley Lyn Olson
New Mobility Magazine Contributor
Hometown: San Francisco Bay Area
What advice do you have for someone who is newly injured?
Welcome to a new world. A world where you can use your innate skills and interests and make an impact now. Be bold in your own way. Be creative in and conscious of your unique journey. If you have the will, there is a way, even if you have to make your own path. Figuring out how is the challenge, but in life, we are meant to be challenged, and life doesn’t give you what you cannot handle. Accept what is, day by day, moment to moment. Have patience for the world around you, and of course for yourself as well. Ask questions and get advice from those with experience. Countless advocates have worked for decades so that we have the accessible opportunities available today, but the work isn’t over because more barriers need to be broken. What’s possible? Who do you want to be? What kind of world do you want to see now? You have the freedom to decide. You can do this, and you have the SCI community’s support.
How would your life with a spinal cord injury be different without New Mobility?
I love motivating and being motivated by my peers. I thrive on possibilities. In so many ways, we are all pushing each other to be better and try harder—to innovate and make the inaccessible accessible. All the editors, contributors, and community of the magazine are the ramps in a world of stairs. Together we are expanding in every avenue of life, making it possible to achieve our dreams and open doors for others.
What do you most get from being involved with New Mobility as a person living with spinal cord injury?
As a writer and the founder of wheelchairtraveling.com in 2006, it’s a chance to share a unique perspective about traveling the world that encourages others to get out and experience the joys of life. As a reader, I have access to meaningful insights on current inventions, products, policies, and politics that directly affect my lifestyle.