The post below is from my response to a proposed by question for the Christopher Reeves ‘ foundation’s Blog posts for their advocates. (I’ve been a volunteer advocate with the foundation for a little over a year now.)
The past few weeks have been hard on me physically and draining mentally. Slowly working on fulfilling orders, buying supplies for future orders and continue with my mindfulness and art therapy courses.
I, however, I wanted to share something with you and although this was written almost a year ago it’s still pretty relevant.
By Brittany Branard, Reeve Foundation Public Policy Coordinator and Deborah Vick
Deborah Vick advocates for the Reeve Foundation via the Regional Champions advocacy program. We asked her to share a bit about her story and her experience as an advocate living with disabilities.
Q: Please share a bit about your experience with living with disability.
A: Though there are many thoughts that come to mind when I think of my life through “the eyes of my disabled self,” the word that appears most often is CHALLENGING. I believe this word is in the forefront as I continually face challenges - be it physical barriers, those created by the insurance agencies, those created by the pain and debilitation of some of my disorders, or simply getting from “point A” to “point B” after losing the ability to drive. I endure and overcome so many challenges on a regular basis, yet the most difficult of all is the internal battle between what “I want to do” and what my “body can do”. With invisible disabilities, I fight the ongoing battle to receive true pain management, facing many doctors who do not believe, comprehend, or understand the levels of pain one might be in. Along with so many others, I have also fought for many years, in some instances decades, for proper diagnosis of my various diseases. Fortunately, over the years I have finally found a team of doctors who are working with me to help me manage many of my disorders and secondary symptoms. The disorders, secondary disorders, treatments thereof, have all posed some form of a challenge for either my family or myself. Like so many others who battle chronic illnesses, mine have at times been very isolating. Many times my levels of chronic pain, fatigue and weakness were so great, I am unable to get out of bed. However, with my increased involvement with social media, this has greatly declined. I also strive to make the most of my “better” days through various volunteer roles in local community organizations. Most do not know what my “bad days” look like for they only see me on my “good days.” I try my hardest to put forth a “positive attitude” as I find this helps me work through some of my personal challenges, as does doing all I can to give back to my community.
The second word that comes to mind, when thinking of my life through the eyes of a disabled person, is EMPOWERMENT. At first, I was surprised to pair this word with my experiences as a disabled woman, but when analyzing my experiences, this word is a perfect fit. This word can mean so much to so many people. For me it means taking control of all I possibly can, educating those around me and helping inspire those in similar situations to EMPOWER themselves so that they too may lead the fullest lives possible. Like so many others, I fight the ongoing battle to receive medical treatments, especially for treatments that are "off label," yet are known to be extremely beneficial. I have supported legislative efforts for Orphan Drugs so that doctors may use FDA approved drugs to treat rare diseases. One such orphan drug has truly been life changing for me. It may even have saved my life. My experiences and challenges that I faced while coming of age with a progressive disability has empowered me to fight for our rights as people with disabilities. I have been knocked down or detoured from chosen path more times than I care to count. (I still regret that my disabilities and the treatments prevented me from completing my last 5 units of my law degree. I’m still hoping, one day, I will find the means to completing my JD). I do my best to get back up as quickly as possible. My experiences have taught me that we can never give up. That we must always push forward, in whatever capacity we can. Sometimes it may mean taking only a few baby steps forward but that we must never give up. Moreover, my experiences have taught me that we all have something of value to give back to our communities. That we must strive to help those with disabilities become active members in our community. That each and every one of us has something of value to contribute. As such, we must do all we can to help include those with disabilities, even those confined to their homes or healthcare facilities.
Q: Why are you advocating for the Reeve Foundation?
A: Over the years, I have shared my stories and experiences with many others. Time and time again, people have encouraged me to share my story, write a book about my experiences, especially those as I navigated through higher education, and/or create a blog/vlog. Many people with whom I have shared my stories found them to be inspirational. My family, especially my two young boys, have encouraged me to share more of my experiences. For the longest time I delayed sharing my experiences, partly due to the challenges I have faced while gaining control of chronic illnesses. Obtaining the right treatments and all the maintenance treatments needed to help keep me functioning are very time consuming and physically draining. Finding the time to share my experiences can be very challenging as I already delicately balance my time between my treatments, recoupment periods, my familial obligations and the various organization for whom I volunteer with. In addition to this, I recently formed a new small crafting business to help raise funds for inclusive programs, especially for youth.
Over the past few years, I have been inspired, if not driven, to share my stories and experiences as a disabled person. I am most especially motivated to do so after the challenges I faced obtaining “lifesaving” medical treatments. I find it incomprehensible that I had to battle and go through a lengthy appeals process simply to obtain O2 therapy and endure further challenges while appealing to obtain my portable O2 concentrator. Like so many others, I was forced to be my own advocate during some of my most challenging moments. As some of my symptoms stabilized, I turned inward to see how I can best serve our community as a whole. I had once dreamed of and prepared for a career in politics and social justice law. I had a very strong background in political advocacy. I believe the best way to serve our community is through advocacy and sharing my experiences. I believe by sharing my stories with legislators, I help to connect a face/image to what otherwise may have been a “faceless” piece of legislation crossing their desk. I have chosen to work with the Reeve Foundation as I believe they work hard to help so many people. They provide a wide variety of education programs, as well as mentoring and referral systems that help those who are newly disabled to veteran members and/or caregivers in our community. They are also hard at work to help provide us with the tools necessary to be the best possible advocates within our own means.
Q: Do you have any tips for advocacy?
A: The most important piece of advice I can give someone is to “put yourself out there”. In other words, be willing to meet with your legislators. Moreover, be willing to truly share your experiences with them. I found many legislators to be very receptive. For most, it will be an “eye opening” experience as they “would never” have imagined such challenges. My most successful meetings occurred after sharing a personal experience or article of which I had written. It helped the person which whom I was meeting to better understand some of my experiences.