As a professional Sickle Cell advocate, there is nothing that supersedes the lived experience. Living with a chronic illness every day gives a perspective that can never be acquired by those who do not suffer from the disease. I was born with Sickle Cell Disease. Sickle Cell Disease (SCD) is an inherited genetic blood disorder, the most common in the United States. It is characterized as a condition that causes the blood cells to be malformed and break down, thus causing pain and other complications. As a child, I suffered from more frequent bouts of pain, a hallmark of the disease called a vaso-occlusive crisis, than I do as an adult. I suffered a stroke at the age of two due to complications of SCD.
SCD is an unpredictable disease that can strike at any moment, and as a student in primary and secondary school, I missed a lot of classroom time due to being hospitalized. Despite missing a lot of days of school, I always earned good grades. I was privileged to graduate with honors from high school and with my undergraduate degree. From then on, I continued to excel and progress in my studies, regardless of the prescribed limitations that many wanted to put on me. I took advantage of every opportunity I was given to educate my school on SCD. I coordinated presentations, authored papers, and even hosted blood drives – I still do it in graduate school; I am doing it now in this blog post!
Let me take this time to encourage anyone who is reading this. Do not let anyone tell you what you can and cannot do. If you want to achieve it, go for it. If one door closes, just try another door. I would love to see where those teachers and administrators are now and tell them all the wonderful things I accomplished and prove to them that they were wrong.
In my last post, I mentioned that I am a person of faith. I strongly believe in Divine Providence and the intervention of God (whomever that may or may not be for you). I am here today due to a myriad of events that have worked together for my good. It all started when I met Tonya Prince, the Executive Director of the Sickle Cell Association of Houston. I met her several years ago at the Sickle Cell Disease Association of America, Inc. National Convention. We instantly connected and began to collaborate on several sickle cell advocacy projects. Soon after meeting Tonya, she introduced me to Texas State Representative Jarvis Johnson while attending another national sickle cell event. When I first met Representative Johnson, I would not have guessed that in 2021 that I would be interning in his office.
While searching for MSW programs, I stumbled upon the University of Houston’s MSW with a Political Social Work focus. Instantly, I became intrigued and knew I had to apply. I also found the information for the Austin Legislative Internship Program and was sold on the placement. I applied to and was accepted to both programs. When I learned that I was selected to be an Austin intern, I knew the only person I wanted to work for was Representative Jarvis Johnson. Dr. Pritzker, the director of the Austin internship, attempted to manage my expectations and informed me that it is not customary for interns to request where they are placed, and that I may not be able to work specifically on SCD related legislation. None of that mattered. After his accomplishments for the SCD community in Texas, I was adamant that I wanted to work in his office, regardless of if we get the opportunity to pass SCD bills.
Fortunately, during this 87th Legislative Session, Representative Johnson filed two bills dealing directly with SCD and one resolution. He also joint authored and coauthored several pieces of legislation that would expand access to healthcare. Sadly, one SCD bill never made it out of its respective House committee, but the other bill was voted out of committee unanimously and passed the House with bipartisan support. Unfortunately, the latter bill died in its Senate committee. The filed resolution was adopted and sponsored by Senator Borris L. Miles, who is the senator who represents me, and lives with SCD as I do.
Although the bills directly concerning SCD did not get signed by the Governor, I am still happy to have had the opportunity to staff the legislation and gain this once-in-a-lifetime experience. At the beginning of the session, my Chief of Staff told us that we must learn how to “redefine wins.” Of course, everyone wants every bill that they file to pass. However, this is not a perfect world, and sadly bills will die. I came with high hopes that more of the SCD and other bills that I worked on would pass, but they did not. However, I have learned to review and redefine what is viewed as a victory. To file bills and get them in committee hearings and educate the Legislature about these topics is a win. I am honored to have worked in Representative Jarvis Johnson’s team with brilliant and passionate people.
SINE DIE (emphasis on DIE)
I am so looking forward to SINE DIE, the last day of the legislative session. I have been honored to work for my member, along with my coworkers and cohort. I enjoyed meeting new people, with whom I hope to maintain an indelible bond. However, I am excited to move on to new endeavors. I will be honest to say that as someone who has a chronic disease, this internship was unlike any other experience. SCD patients experience chronic fatigue, and the demands of this placement honestly began to weigh on me. During these 140 days (about 4 and a half months), my health has always been a looming concern. I always had a slight worry in the back of my mind that I would get sick and not have the capacity to finish the assignment. I have worked in the federal, county, and state-level government in various positions. Nothing compares to working for a legislative session. The demands, long hours, and unpredictability of the scope of work were something that the leadership appropriately warned my cohort about well before we arrived. However, it does not make sense until you actively live through it. There were many nights I went home contemplating quitting, thinking that I could not handle the pressure. I would go home thinking I am slowing my office down instead of being an asset. However, I know that by sine die, I contributed all I had to offer.
I have never been so challenged in my life. I do not say this to be negative. I say this to underscore the fact that I survived. Despite living with a chronic disease, regardless of the odds, I made it! I have committed to being an example for those with SCD and other rare and chronic diseases. If they see I can do it, they can too. I want to inspire others like me who are disabled that although framers of the state and the Legislature did not create spaces like these with us in mind, we can and should insert ourselves in the process to make sure we represent those who look like us. Representation does matter. I was reflecting a few days ago; during this session, I have not met any staffer or member who was disabled. Not saying they do not exist here; I observed I had not met any. I often wonder if they feel like that these opportunities are unreachable.
I am incredibly humbled for the small part that I played in this legislative session on impacting the lives of thousands of Texans who suffer from SCD. I am happy to take a lifetime full of pain and despair and turn it into hope and healing for those in this state. Although new to Texas and not sure if this state is my home after I graduate, I am happy to have the opportunity to change the narrative around SCD and for those who survive every day with a chronic illness.
by André Harris, intern with Rep. Jarvis Johnson
Originally posted from University of Houston Graduate College of Social Work’s Austin Legislative Internship Program. The College selects graduate MSW students to intern at the Texas Legislature during its legislative session every two years. This post was syndicated with permission from its authors.
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