People need to put faces to stories to believe them and care. This is why non-profit organizations ask one or more of their clients to stand at the podium and tell their own story at the annual fundraiser. This is why local news channels throw at least one feel-good, from-struggle-to-success story into almost every broadcast. It already feels like forever ago when the Affordable Care Act (ACA) was signed into law in March 2010. Maybe that is why so many people have forgotten about the faces and stories that were publicized during the year prior in efforts to humanize the need for better access to insurance and healthcare. I wasn’t one of those faces at the time, but I am now, and repealing the ACA will cause my death. That’s not hyperbole, it’s fact. I am a face and story you can consider when you wonder if the ACA matters.
In March 2010 I was a year and a half into a pretty great job at a local non-profit agency. Sure, there were things about the job that were less than ideal, but for the most part I felt good about the work we were doing, the people with whom I was doing it, and my ability to contribute to that work. I was being paid slightly more than I had ever made per hour before, I had extremely low cost health insurance because the agency paid so much towards it, and my son still qualified for Medicaid as a secondary insurer which covered the copays and things my private insurance didn’t pay in full. I was getting dental care for the first time in 15 years, and I felt like a responsible mother. I wasn’t making enough money to realistically save any, and I lived pretty simple, but I finally felt like an adult in my mid-to-late 30s. I had some health issues, most of which had been addressed by getting a hysterectomy in 2008 and being diagnosed with PTSD and fibromyalgia in 2009. I was profoundly grateful to have insurance that covered a lot of testing to rule out epilepsy, brain tumors, and other concerns caused by the physical symptoms of my PTSD. The ACA did not change anything for me, but I recognized what an important step is was for so many others.
Even though the ACA didn’t immediately affect me personally, I was working in the field of healthcare access—particularly for children on Medicaid. We were on the frontlines of helping families find reliable and culturally competent pediatric care. We saw how many children were falling through the gaps in receiving services, despite having Medicaid, because of other barriers such as: getting to the doctor, a shortage of pediatric dentists who accepted Medicaid, and long waiting lists to see a psychiatrist for behavioral health prescriptions. As far as we could tell, the ACA was the greatest thing to happen in our lifetimes. In the long run, it meant more children would have more access, and it meant their parents would also finally have some kind of coverage.
I will never forget taking a phone call from a mother to arrange transportation for her sick child to the doctor’s, and the mom asking if I knew of any program that provided transportation for adults. There weren’t any. She told me she had just had a miscarriage the week before while at home alone with her toddler. She didn’t have a way to get in to see her doctor for aftercare and didn’t have any insurance so she couldn’t afford whatever prescriptions they might give her anyway. As someone who’d had several miscarriages, some of the symptoms she named alerted me to the fact that she was at severe risk of sepsis and infection. She needed to be seen immediately. I broke rules. After arranging the transportation to the child’s appointment at a clinic across the street from an ER, I suggested the mom go to the ER immediately following the appointment. We were not allowed to provide transportation to the ER or for adult appointments, but she could do both in one trip and then get the return cab as if it had just been one long appointment. This didn’t address how she would ever pay that ER bill, but it did, in fact, literally save her life. This is how I knew the ACA was a vital change for our country.
In 2014 I was let go from that job, the casualty of longstanding ableism and racism – both of which had taken a major toll on my physical and mental/emotional health. It had taken changing doctors and trying other options we knew were not appropriate fixes for me to finally convince my insurance to let me try a more expensive medication that many people with fibromyalgia were finding worked for them. We tried it, but because I am also bipolar, we learned the hard (and scary) way that I cannot take something that contains an anti-anxiety medication because it has the opposite effect and dramatically increases my anxiety and paranoia, while also causing extreme jitters and mania. I had warned my supervisor I was trying out this new medication and not reacting well to it, but that we were trying to give it the appropriate trial period to see if those side effects would lessen as they had for others.
Instead of accommodation or compassion, I was placed in more and more stressful situations in the office, situations that preyed on my documented anxieties and gaslighted under the guise of my paranoia. After being racially verbally abused by a new coworker and, under this stress, revealing a previous supervisor’s longstanding harassment, I was fired. Just like that, I had to go off the new medication before we could see if time would mellow the side-effects. Just like that I had no medical care at a particularly vulnerable time in my mental well-being.
I point out the particularities of my loss of medical coverage so you can understand what a loss of treatment options for an already traumatized and disabled person means. I couldn’t refill my prescription and had to simply stop taking it. The timing was such that I wasn’t even able to gradually step down, so I also experienced some rather unpleasant withdrawal symptoms. I wasn’t able to pay for an office appointment to see my doctor to formulate new options. I point these things out so you can consider what it means to be without insurance – something that prior to the ACA a huge portion of our population was – and what it means to lose the insurance one has grown accustomed to – something that will happen to a huge portion of our population if the ACA is repealed.
I applied for Medicaid as quickly as I could after losing my job. I was turned down because even though I answered the questions and informed them I no longer had an income, that I had lost my job, they judged my income based on the six months prior when I had been employed. There was an appeal process that I followed, presenting updated information to them, including proof directly from my ex-employer that I was no longer employed, and I was still turned down because they said I had made enough money that I should have savings that would allow me to purchase insurance. They could plainly see that I had no savings in my accounts, but that wasn’t their point. They believed I should have saved money.
Six months later my tax preparer (fortunately, also a long-time friend) raised his voice at me from the other side of his desk, shocked that I had not obtained insurance and now required to provide evidence of an exemption so I would not be fined. He also informed me there were just a few days left before the deadline to get on the ACA website and apply for coverage. I immediately did so, and it was the federal government that determined I qualified for Medicaid, forcing the state to begrudgingly give it to me. I also started college and have been “out of the work force” since and instead living (in very difficult conditions) on my student loans, freelance writing, and occasional small sales of my own artworks. But I have health insurance.
In August 2015 I was diagnosed with a lifelong STI that combines with my existing autoimmune issues, causing my fibromyalgia to “migrate” to other parts of my body not previously affected by it, and creating a pretty consistently painful situation. This change has also lowered my immunity to infections. I’ve had bronchitis more times in the past year than in my entire life prior, for example, ending up in the ER and requiring heart function tests more than once. At the same time, a lifetime of disordered eating caused by the mix of poverty and trauma began to cause noticeable problems for me, and I was diagnosed as chronically malnourished – but because of ongoing poverty this continues to be an issue and I have not yet succeeded in breaking the pattern.
In February 2016 I fell and broke my ankle, requiring surgery and three months completely off it. I’m still in a great deal of pain and have strained it repeatedly, torn a ligament at least three times, and generally been extra clumsy ever since. Being less steady on my feet and having to keep weight off that one a lot of the time has exacerbated an old hip injury from giving birth 20 years ago, and made my scoliosis more pronounced. My knees are starting to give out on staircases. My autoimmune issues have gotten worse and are flaring almost constantly. I have a few prescriptions and a few over-the-counter medications that I need in order to help manage pain and illnesses a little better. I’m still a full-time student, working a few hours a week in the school gallery, and living on very little. My Medicaid has covered all of the care associated with my illnesses and injuries. Medicaid through the ACA has granted me access to doctors, tests, and treatments as needed.
Whatever you might think about my quality of life when you read all of the above – I have a good life. I am studying art history, making art, going to shows with friends, writing and publishing, engaging in critical dialogues about art’s role in social justice, planning a research trip to Morocco after graduation, considering graduate school options, and genuinely enjoying life. I am not “suffering” because of disability. I am sick, I am in pain, yes. I am a queer, crip, person of color in a country where I thought we were evolving but instead we are moving backwards suddenly. But I have a beautiful life in many ways. I am not someone to pity.
I am a face of someone who will be devastated by the ACA being repealed. I will lose my Medicaid. I will not be able to afford any other insurance or the copays and deductibles associated with them. With the proposed exclusion of coverage for pre-existing conditions, even if I had insurance it would be of very little use to me. I won’t have access to my doctor, access to my medications, access to any new treatments for my conditions that might become available, or even access to any mental health services.
If you don’t live with chronic pain and illness, you can’t fully understand the toll it takes. When chronic pain and illness are combined with existing mental health conditions and no treatments of any kind, it is impossible to imagine living. If the illnesses themselves and opportunistic infections don’t kill me first, the inability to deal with the pain and hopelessness will. And the scariest thing about it all is this: I have so many other disabled and chronically ill friends who will die so much faster and more painfully than myself if the ACA is repealed.
I have friends – people I know and love – who will quite literally die within months, some in weeks, when their medications and treatments are taken away. I might last a couple years. Probably not more than two, but maybe that long. I might manage to still accomplish something in that time that makes me worth remembering, something that serves humanity. But so many people will be destroyed and we will never know what brilliance, beauty, and marvelous things they might have created to save us all. That makes me feel pity for all of us.
Aaminah Shakur is a queer, crip, multi-racial/multi-cultural artist, art historian, culture critic, and poet. Their website is aaminahshakur.com.
