In this commentary, Lauren Elizabeth, a chronically ill journalist, reflects on how the things perceived by nondisabled people as luxuries can vastly improve quality of life for disabled people.
This commentary is part of the Voices of Disability Economic Justice Project, a partnership with TCF’s Disability Economic Justice Collaborative. Voices of Disability Economic Justice showcases disabled writers’ first-person perspectives on the economic issues that matter most to them.
I’ve always known that having a chronic illness is expensive. From a young age, I can remember my mom talking about the cost of having a “medically complex” child. Health insurance, deductibles and copays, prescriptions, physical and occupational therapy, mobility aids—it all added up. But it wasn’t until I developed several more debilitating conditions at the age of 19 that I realized the cost of chronic illness goes beyond what we typically think of as medical expenses.
For non-chronically ill people, things like grocery delivery, takeout, and ride-shares may seem like luxuries. For those of us who experience pain, fatigue, and other disruptive symptoms on a daily basis, those “luxuries” are often the difference between maintaining our baseline and triggering a flare up—or in extreme cases, a permanent worsening of your condition or even death. But, of course, convenience comes at a price. For example, having groceries delivered versus buying them from a physical store can see price markups of 15 percent or more, plus delivery fees and tip.
A disabled person needs, on average, an additional $17,690 a year to obtain the same standard of living as a non-disabled person. Coming into that kind of money can be nearly impossible for chronically ill people, especially those who are multi-marginalized.
In 2022, just 21 percent of disabled people in the United States were employed, compared to 65 percent of non disabled people, according to the U.S. Bureau of Labor Statistics. Those who need to rely on Social Security Disability Insurance (SSDI) benefits only receive an average of $1,234 a month, which the Social Security Administration admits is barely above the 2018 poverty line. In fact, many chronically ill people are forced into poverty, largely due to the asset limits for people on SSDI. As of 2019, 27 percent of disabled people in the United States were living in poverty, compared to 11 percent of non-disabled people. These rates are even higher for BIPOC, especially Black people. Thirty-seven percent of Black disabled people in the United States live in poverty, compared to 24 percent of white disabled people.
So, many chronically ill people can barely afford to survive, let alone live comfortably.
I have been incredibly privileged over the last few years to be able to experiment with various products in an attempt to reduce the frequency of my chronic illness flares and improve my quality of life. It started with a slow cooker, convection oven, and sustainable single-use plates to make cooking more accessible to me as someone who experiences heat intolerance and limited energy. Then a mini fridge for my bedroom so I could have cold food, drinks, and ice packs on days I’m too unwell to get out of bed. A robot vacuum to avoid the pain triggered by cleaning the floors. A laptop desk and extra-long phone chargers so I can work from my bed. I even invested in a portable air conditioner in an attempt to survive summers in my house without a central cooling system. My next investment will likely be a countertop dishwasher as washing dishes not only triggers many of my symptoms, but is also a sensory nightmare.
Most of these things are not marketed as disability aids—and, if they were, they would be even more expensive—but they have made a positive impact on my ability to do the mundane day-to-day tasks that most people do on autopilot. They aren’t a perfect fix. Some days I still have to order takeout or wear the same pair of pajamas one more time than I would prefer. But they mean that I get to spend more of my precious energy doing the things I care about like writing, playing video games, and snuggling with my dog.
So much of what goes into managing a chronic illness is being privileged enough to be able to outsource—either to other people or to technology—tasks like running errands, cooking, and cleaning. Chronically ill people already have significantly fewer usable hours than non-chronically ill people, many of which must go toward coordinating and attending appointments, picking up prescriptions, fighting with insurance companies, and recovering when we inevitably experience a flare. So we deserve things that can offer us relief, yet it comes at a cost that many can’t afford.
Having access to the things that will help us have the best quality of life possible shouldn’t be a privilege. We should all have the choice to instead spend our limited time, energy, and money on all the little things that make life worth living.