1. Please share a bit about your experience

I am a quadriplegic of 37 years and a former lawyer for the Federal government. I spent 19 of those years at the US Department of Health & Human Services, Office of Inspector General. I have a natural interest in policy related to healthcare. Along with my professional experience, I have had many health issues that give me insight into the operational and procedural challenges and barriers in our healthcare system faced by individuals with disabilities, especially those with spinal cord injury (SCI). This background is a natural fit to be a Reeve Champion. The group policy calls are of great value. For instance, I shared my views regarding PPE for caregivers in the home setting as well as for individuals with SCI during the pandemic calls regarding the CARES & HEROES legislation. As someone with a trach, this was important to me personally. I was pleased to receive feedback, and Reeve successfully got grants for Independent Living Centers to fund PPE-related supplies up to a certain amount.

Additionally, as a breast cancer survivor, I am passionate about accessible healthcare for women, especially mammography machines. I met with Kim Beer, Director, Public Policy, and representatives at the American Association of Medical Colleges (AAMC) to discuss their study and recommendations to include individuals with disabilities as healthcare providers. We spoke about challenges with the accessibility of equipment, especially for mammograms and Pap smears. AAMC expressed interest in these ideas as they move forward.

In short, I’m always thinking of ways to improve service delivery to individuals with SCI. Being a Reeve Champion gives me a forum to share my policy proposals with those who can make an impact.

2. Why are you advocating for the Reeve Foundation?

I believe in the Reeve mission of advancing innovative research and improving the quality of life for individuals and families impacted by paralysis. I sustained my SCI at 16. My life was turned upside down. At 53, I have learned the ropes and have much to share to make this difficult transition easier. I believe it is a moral obligation to give back and help newly injured individuals transition back into society and the “new normal” that they face. Reeve is making a tangible difference in creating a more accessible society. Great strides have been made since my injury in 1983. Especially through Reeve quality of life grants. As a quality of life grant reviewer, I got a firsthand look at the wide range of applications, from adding a ramp to a library all the way to funding recreational activities such as accessible horseback riding.

Also, as a Reeve Ambassador, Champion, Peer Mentor, and guest blogger, I am able to educate others about the resources and programs of the Reeve Foundation. The Reeve staff is top-notch and has a wealth of information. Reeve works with individuals and/or families on a wide spectrum of issues such as approaches specific to health issues, home modification, and funded guidance to assist in transitioning to college. Additionally, their innovative research impacts the lives of those currently injured and those that will be injured in the future. I have found a “home” to use my voice to educate others based on my experiences.

3. Do you have any tips for advocacy?

To be an effective advocate, fully understand who and what you are advocating for. Providing a personal story of either yourself or someone else that relates to your advocacy efforts is incredibly effective. Understand the person or organization on the other side. What is their perspective? Are they aware of what you are advocating for? Do they know about your organization? Sometimes advocacy is more than education, especially when you are dealing with a violation of civil rights laws, such as the Americans With Disabilities Act (ADA). Give the entity in violation the benefit of the doubt by pointing out the problem. However, if there is no amicable resolution, it is important to enforce the law. The ADA is not self-enforcing, so it is important to step up when violations occur.

Additionally, and something that Reeve does well, is to partner with other organizations and/or policymakers; find your allies. There is power in numbers. Organized efforts such as the Roll on Capitol Hill, have proved to be successful. There is also a need to respond when there is a “call to action.” This can involve an email campaign requesting individuals to reach out to their representatives as well as collective lobbying efforts. Finally, recognize that change is difficult, and vigilance is necessary. Be strategic. Think of how you can advocate for incremental steps that may be more achievable than a massive overhaul. It doesn’t mean that systemic change can’t happen. But breaking it down one step at a time may result in a more successful effort.