Are You Aware? Waves of Change
This is part VIII in our Awareness Wednesday series on disability. Read the other posts in the series here.
I sit down at my desk, grab my laptop, and open a new document. I look around my desk at the chaos that lies in front of me. There’s a stack of booklets and research papers and policy recommendations from states around the country. Lots of sticky notes, dry erase markers, my detailed planner, and my long to-do list. My dry erase board is filled with scribbled notes and flowcharts about contact tracing the spread of COVID-19 in “hard to reach” communities. I see a stack of reports from Utah’s Medicaid trends and my eyes fill with tears as I see the spike over the last few months in adults on Medicaid.
I think back to a call I made in February of 2016 — a call that would shift the trajectory of my life.
Before we talk about March, let’s back up to late summer in 2015. I was in California, surfing with my little brother to occupy ourselves while my older brother was at work. Universities, jobs, and grad programs had pulled the three of us across the country, and it wasn’t often we got to have a vacation dedicated to simply hanging out with each other. I took the first wave — what would be our only wave of the day. Just as I jumped off my surfboard, another surfer was swimming out. She had her board beside her instead of underneath her. Her board got swept up by the wave I was surfing and popped up and smashed me in the head.
BAM.
I don’t remember much from this moment, but I remember thinking it was an unbearable amount of pain. I remember a half moment of being underwater. I remember pieces of the rest of the day and week, though I have filled it in with pictures, videos, and stories from those who were surrounding me.
If you would have asked me what a traumatic brain injury was before that day, I would have probably talked about watching an NFL player I loved get laid out by a competitor or the Will Smith movie. For someone who’d had a number of concussions, I knew very little about what happens when a brain is smashed upon high impact.
My previous concussions, which we think number between five and ten, were like four-day experiences that looked something like this: Your head gets knocked around somehow, you feel dizzy and nauseous, you say silly things and forget where you put your keys, you sleep and drink water. And then in a week you are back to normal.
I expected this new injury would be the same. But what I had not realized was the cumulative impact that head trauma had on my brain’s ability to bounce back. I was unable to brush my teeth, walk normally, or talk without severe stuttering. I ended up on a neuro-trauma floor. After spending the rest of the month at Intermountain Medical Center, I was able to walk out of there and say my goodbyes without a stutter. I felt like I would be back to normal soon. Surely, I would feel like “Steph” again.
I told my boss I would probably just need one or two more weeks in outpatient treatment. Two weeks went by, and I became frustrated by the number of things I still had no idea how to do after 10 outpatient appointments. I told my boss to expect me back by Halloween. Or, OK, maybe closer to Thanksgiving. Definitely by Christmas, I told myself.
I have a note I wrote to myself around that time that says, “Just remind yourself that soon enough you will be back by January 2016. It feels like a long time from now. But you will be back to your life soon and this will be a simple six month pause in your plans.”
At the end of January, I was let go from my job — they could no longer hold it for me. I was heartbroken and angry. I also began to worry about how I would continue treatment, which was becoming even more important as the number of cognitive deficits were being added to the list. I was told, “You’ll get Obamacare. Or you’ll get Medicaid. There are so many programs for people who lose their jobs and healthcare. It’s fine.”
It turns out that in Utah it was a more complicated problem than I had realized. The rest of my year would be filled with exorbitant COBRA payments, 50+ pages of paperwork for Medicaid and disability programs.
Denied.
I was denied from getting healthcare on the “Obamacare” exchanges because it was set up to fill in the gap between the state’s safety net programs and 250% above the poverty line. I had no income because I had no job, and I was not allowed to work. So the national exchanges expected I would be covered by my state, but Utah had not expanded Medicaid, so childless adults could not access Medicaid.
“‘Childless adults.’ What does that even mean?” I asked the state agency that controlled access to Medicaid. They told me, “Well if you were to get pregnant you would get Medicaid, but not if you don’t have children.” It was a pretty wild thing to tell someone who was still learning how to identify what day of the week it was and how to know which stovetop burner you turn on.
I asked the state agency through my anger and tears what I was supposed to do.
She said, “Call your elected representative about Medicaid expansion.”
That was why I made that phone call in March 2016. I was calling my state legislator to ask what was happening with Medicaid expansion. They had just voted on it literally that week, and I was told it wasn’t going to happen. They would try again next year, he told me.
I hung up and sobbed. I couldn’t wait another year for my treatment. I was supposed to be better by then, I thought. I appealed the paperwork, and because a thorough neurological testing analysis was completed, the federal government deemed me “disabled.”
I sobbed. I didn’t want to look at the paperwork. I understood why my brother had to apply to this program for me — it was required for any “childless adult” who applied for Medicaid “due to being unable to work.”
Disability is a term used to describe the programs workplaces have for those who have a short-term condition they need extended paid time off for. It’s also used to describe a physical or mental condition that limits movement or daily activities.
I looked at that paper and read it over and over again: “Disabled.”
I didn’t want to believe it was true, to be honest. All I wanted was to go back to the day before it happened. I wanted to go back to my job. I wanted to be able to drive again, up the mountains where I spent every weekend hiking and climbing from the moment the snow melted until the snow reappeared six months later. I wanted to be able to go back to the day when I could hold my “nieces and nephews” (used loosely to describe every baby my friends have) without cringing the moment they cried. I wanted to go back to the day when I was a social butterfly and felt comfortable in any situation.
There is incredible work done in the disability activism community to encourage disability pride and empowerment. I get it. I believe in empowerment. But I didn’t want to believe my life had changed.
But it had. And as my brother kept reminding me, “This is an important step for you to have some more independence and more choices financially. And you will finally get back on a healthcare plan so you can continue treatment and continue to heal.”
After learning I was approved for disability, we would shortly discover that barriers to accessing Medicaid in Utah still existed.
Because I had worked long enough prior to my injury and paid into the social security programs over the amount required, I was able to qualify for a level of disability income that placed me over the federal poverty limit in Utah. So I no longer qualified for Medicaid unless I spent a certain amount each month on Medicaid (to put me below the federal poverty limit). They didn’t offer a lot of money to live off of, and now they wanted me to pay about 13% of it to the state so that I “qualified.”
I was so irritated. And I was denied again. But about 18 months after my first application, I was finally approved and enrolled in the program.
In the middle of it all, while seeing that the system was not set up to help people when they needed it the most, I began reaching out to organizations and advocates to learn how I could help others. If I hadn’t had a brother with a master’s in public policy, and an ability to get through barrier after barrier, I would not have been able to push those barriers down myself.
So now I sit here looking at a blank document, thinking about this journey, which, in the midst of a pandemic, feels like a lifetime ago. I think about the ways my life and joy have expanded through my involvement in various advocacy efforts. I’ve met so many heroes on this path who have taught me how to show up and be involved.
After a long road, Utah finally expanded Medicaid, and in a pandemic where so many people are having economic and health burdens, we have a functional safety net program to catch them. I think about how I have been able to use my public health education to push for better community health. Now, I get to sit on the committee that plays an advisory role to Medicaid. I look at the number of people who have been able to enroll in the last three months, and I feel so much gratitude for progress — individually and collectively.
I fail a lot. I still lose track of the day. I still forget where I am. I can’t drive. I definitely have barriers. And I’m still in treatment. Treatment that, after enrolling in Medicaid, helped me grow and relearn. My brain is healing. My life is healing.
As I reflect, I see the trajectory of all the things that led me to this moment. This moment of using my advocacy and public health education to push for smarter and better public health policies. And I realize that, while it’s been hard and exhausting and frustrating, I finally don’t wish I could just go back to that day before my accident.
Many of us will face burdens and frustrations and barriers. Sometimes our society doesn’t have things set up for all of us to succeed or have ease in navigating the programs we need. But don’t let that stop you. Our voices matter, and we must speak up and make things better.
Stephanie Burdick is a survivor of a traumatic brain injury and a policy researcher for public health in Salt Lake City, Utah. Stephanie is relentlessly striving to bring greater health equity in policy and programs throughout Utah because she recognizes one of our greatest societal injustices lies within our nation’s health disparities. Stephanie has a public health degree from Brigham Young University and has used her education and lived experience to collaborate with fellow advocates and community leaders on expanding Medicaid, bringing greater value to Medicaid members, researching and identifying funding mechanisms for improvements in community health, and building sustainable pathways to a better public health infrastructure. In addition to building bridges of partnership in the community, she finds joy in hiking Utah’s beautiful mountains, reading, painting, and spending time with family and friends. Stephanie is a member of Mormon Women for Ethical Government.
