Long COVID disabled me 2 years ago, and the disabled tax means I pay for it constantly

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• Disabled adults in America have to pay 28% more to achieve the quality of life of non-disabled Americans.
• I used to love thrifting, but the disabled tax means that's not a viable choice for me due to long COVID.
• I can't work full time, and that means that I can't make nearly as much money as others.

Before long COVID disabled me two years ago, I had some understanding of disability's financial implications. I knew that getting approved for SSDI disability benefits is a huge hurdle for disabled folks — and that many legally entitled to benefits have their applications denied. Those benefits, I also knew, pay so little that many disabled people can't pay their rent and also afford to eat.

But I'd never heard of the disabled tax, or, as some disabled people have reclaimed it, the "crip tax."

The disabled tax affects all disabled people differently

Like the pink tax, the disabled tax isn't charged by governments, but by society itself.

Products and services disabled people need for our health and well-being are often inherently more expensive, and research has found that American households with a disabled adult need an average 28% more income "to achieve the same standard of living as a comparable household without a disabled member."

But disabled Americans are more than twice as likely to live in poverty as non-disabled Americans. That's partly because simply staying alive is so very expensive for us.

The disabled tax manifests in unique ways for all disabled people. For some, it might include needing to pay extra for things like prepared food, food for a specialized diet, a home health aide, a service animal, catheters, co-pays while visiting the doctor, adaptive technology, cleaning services, or accessible housing — and more.

Buying a home while disabled »

I've had to give up my favorite ways of being frugal

In my own life, disability has been incredibly expensive. Before long COVID, I'd long prided myself for a frugality that helped my family live well even on just one income. I regularly comparison shopped at three different grocery stores, including a discount supermarket for bargain-priced staples.

But the current lack of COVID precautions puts me at too much risk of reinfection to shop in-person, the only option at that discount supermarket. Instead, I pay more for the same staples at an expensive supermarket owned by the same corporation as the discount supermarket, because the expensive supermarket offers curbside pickup.

Pre-pandemic, shopping at thrift stores was one of my favorite hobbies, and I managed to buy the majority of my kid's clothes secondhand. I'm often homebound by long COVID symptoms these days, and haven't found a trustworthy and inexpensive virtual source of used children's clothing online, which means I buy new clothes. But I still dream about thrifting.

The added costs to my home and car

Then there are the medications, supplements, mobility aids, and medical supplies. Because COVID left me with a heart condition that causes lightheadedness when I stand, I equipped almost every room in my home with stools. I bought a suction holder for my shower head so I could shower sitting down. A year in, the suction holder broke, of course, and I had to pony up for a replacement, mailed to me with the Amazon Prime subscription I begrudgingly need for such daily necessities.

Luckily, my insurance covered my folding electric wheelchair — our policy normally only covers manual wheelchairs, which I don't have the ability to push. Barring that lucky accident, I would've had to wait months for a public program to cover a custom wheelchair that wouldn't have folded to fit in our compact car, adding a van large enough for the wheelchair to my expenses. I fear the day my wheelchair eventually dies.

Even my nearly 20-year-old car is a part of the disability tax: Car insurance, gas, and repairs make simply owning a car expensive, but I am too unwell to handle public transportation and cannot risk COVID again in an Uber.

My salary is severely limited

In addition to the sunk costs of the disability tax, loss of income is another financial penalty. Although I work, I often have to take off days or weeks at a time when I am particularly unwell. I cannot manage more than 10 hours a week of work, or my health worsens dramatically. And even 10 hours sometimes feels like too much, especially given that I homeschool my child because of the risk to our family of in-person school without masks.

Living on less than a quarter of a full-time salary with no benefits means that my retirement savings are non-existent, and my total lost wages are immense. I worry about my future needs, but will never qualify for benefits as long as my spouse is alive because of his income.

My story is not an anomaly, as anyone working on disabled justice over the past decades can attest. Disabled people make up 26% of the adult population in the United States, yet we are still cast aside by society and left by our government to struggle against poverty. Facing the financial challenges of life with a disability is daunting. We have no other choice.

This story was supported by the journalism non-profit the Economic Hardship Reporting Project.