Growing up, I always found the kitchen a little intimidating. So in 2020, during a period when many of us were sheltering at home, I decided to learn how to cook. I was already able to make basic meals like pasta, salad and sandwiches, but working in finance meant I often ate out or turned to easily microwavable meals. To prepare, I purchased kitchen staples, including a knife and cutting board. My right arm was permanently paralyzed in a car accident when I was younger, so I bought a one-handed cutting board. It was a sturdy piece of plastic with suction cups on the bottom. On top, there were two features to help stabilize what I was cutting: sharp spokes that stuck out on one side and a clamp on the other side. It came with a “rocker knife”, which I later learned was inspired by the Inuit ulu.
The catch: the board cost $75. For people who can use both hands, kitchen knives are available for $3 to $10 and cutting boards for $5 to $20. But to participate in the same activity – say, cutting a tomato – would cost $75 over someone else’s $30. Why did I have to pay over 100% more to do something as essential as cooking in my own kitchen?
The reality is that it is expensive to be disabled. Research shows that disabled people need at least 28% more income, at least $17,690, to achieve a standard of living similar to that of non-disabled people. Working-age disabled adults are less likely to be employed than our non-disabled peers and have lower wages on average. Furthermore, caregivers often take time off work to support disabled family members, further reducing the overall household income.
This is what many of us in the disability community call the “disability tax” – it costs us more to simply live. And it isn’t just medical expenses, which is a common misconception. The autistic author and advocate Becca Lory Hector describes the disability tax as “the additional effort, energy, finances, and time it takes us to regularly match what our peers and colleagues do on a daily basis”. So, while the disability tax includes financial costs like medical needs, adding accommodations to our homes or vehicles, grocery delivery or buying one-handed cutting boards, it also includes costs like the extra time we need to get ready and leave the house, the mental energy needed to sort through complicated paperwork to request the disability benefits that are meant for us (which can result in reduced working hours), a slower pace of progress and poor job performance.
“Things like showering, getting dressed, preparing meals, and getting where we need to go can often cost us so much ‘disability tax’ that by the time we get to our jobs, we have already spent beyond our budget, and that can make keeping a job unsustainable,” Hector writes.
“The next time someone says I don’t look autistic, I might invite them to look at my bank statement,” writes the social entrepreneur Sara-Louise Ackrill, referring to the money she’s spent on consultants to help her with her autism, ADHD, CPTSD, anxiety and OCD so that she can show up as the business owner of her company Wired Differently, a creative hub for neurodivergent professionals and students.
For neurodiverse individuals or people with mental health disabilities, the disability tax can look like buying first-class tickets on trains or airplanes if they are easily overstimulated, renting one-bedroom apartments so they won’t have to deal with roommates, and accessing therapy. For others, it can mean opting to take rideshare or a taxi over public transit that might be inaccessible and doesn’t offer door-to-door service. I often pay to check in my luggage on flights because I’m unable to put my carry-on luggage in the overhead compartment on my own.
Costs associated with the disability tax can be categorized as direct and indirect costs, according to the National Disability Institute. Direct costs are expenditures such as healthcare – with out-of-pocket costs more than twice as high for disabled people as those for people without disabilities – personal assistance services, service animals, food for special diets or accessible housing or housing accommodations, to name but a few. Indirect costs include forgone income when disabled people have to take time off work, when they face workplace barriers like employment discrimination or when family members have to take lower-paying jobs in order to have the job flexibility they need to take care of a disabled person.
A person’s financial stability depends on the relationship between their income and expenditure. However, most means-tested US public assistance programs consider only a person’s assets and income as a way to determine eligibility for a benefit: if your assets or earnings are above a certain limit, you will not qualify. These public policies do not factor expenses – not even the significant expenses disabled people often have to take on – into the equation.
What ends up happening is that many of us are denied public assistance based on our savings and income levels, even though our extra disability-related expenditures mean we are not actually financially stable. To overcome this impossible hurdle, disabled people who depend on benefits might choose to keep their income and savings low, trapping them in a vicious cycle of poverty.
The Social Security Administration has two disability programs: SSI [Supplemental Security Income] and Social Security Disability Insurance (SSDI). In 2024, the earnings threshold is $1,971 a month for those on SSI, and for those on SSDI, it is $1,550 a month for a non-blind person and $2,590 per month for a blind person. In some places, these thresholds are so low that it would make it hard to afford rent. A disabled person can lose their SSI benefits by having too much income, and we can lose our SSDI benefits by going back to work and surpassing the earnings threshold. We can also lose SSI benefits by being married. In this way, the government essentially controls the lives of disabled people on benefits, penalizing us for our successes, which doesn’t erase the fact that we still need different types of support (such as a personal care attendant).
Neil Hughes, a 53-year-old autistic and paralyzed worker who was placed on SSDI after a roofing accident, shares: “When moving to Utah from California in 2007, the state required divorce for me to keep Medicaid. I refused, so they required a Medicaid spend-down of 50% of all wages. The state worker didn’t understand why I would work to then have half of the money taken.”
Financial stress is a dangerous mix of both financial and mental or psychological burdens. “Being disabled is like having a second job,” writes the artist and writer Rachel Litchman. “The hours spent on phone calls, filling out paperwork and collecting medical records just to ‘prove’ deservingness for services we need can add up to hours lost from the day and lost income. While these administrative burdens are literally taxing, one of the worst consequences is the psychological costs.”
after newsletter promotion
Litchman calls this “navigation anxiety”, the anxiety that comes from dealing with hostile systems and people that sometimes even traumatize disabled people, like the public benefits system, healthcare or disability accommodation services. Because of navigation anxiety, many disabled people avoid engaging in tasks such as filling out forms or making decisions, even for something we need.
There have been some recent steps in the right direction. In 2014, Congress passed the Achieving a Better Life Experience (Able) Act, which allows people to save for disability-related expenses in a tax-advantaged account that does not count toward their assets when determining eligibility for public benefits. In 2018, I attended the launch of CalAble, the implementation of the Able Act in California, which has a set limit of $100,000 in savings, and I noticed that there was still lingering distrust among disabled people in the system. One remaining issue is that it’s up to individual states to implement the act; another is the question of what counts as disability-related expenses.
During the 118th Congress, a bipartisan proposal was introduced, seeking to raise asset limits for SSI from $2,000 – set in 1989, when the cost of living was much lower – to $10,000, a more realistic and much-needed update that would allow more disabled people to qualify for federal benefits. As reported in WBUR last November, the disability rights activist Patrice Jetter supports the recent move, but points out that while this asset limit works for SSI, it does not apply to other services that disabled people may use, such as Medicaid, the Low Income Home Energy Assistance Program (Liheap) and the Supplemental Nutrition Assistance Program (Snap, also known as food stamps). In other words, saving $10,000 for SSI would disqualify people from other essential benefits, and “you’re going to be right back at square one”. The solution, Jetter suggests, would be for all other programs to get up to speed.
Lowering the disability tax is a function of economic justice and equity, and a crucial part of anti-ableism work. We can all help lower the “taxes” of the disabled people in our lives. How? According to Hector, normalize asking for accommodations so that disabled people feel safe and free to do so, offer flexible schedules and hybrid remote work to recognize the extra time we need to do things, and simply provide accessibility. “Accessibility is my favorite way to lower that tax,” writes Hector. “It reduces the work a disabled colleague has to do simply to attend, which means they can just show up and participate with all their energy intact.”
-
Tiffany Yu is an award-winning social impact entrepreneur, disability advocate and content creator. She is the founder and CEO of Diversability, a social enterprise to elevate disability pride and build disability power.
-
Excerpted from The Anti-Ableist Manifesto by Tiffany Yu. Copyright © 2024 by Tiffany Yu. Reprinted with permission of Hachette Go, an imprint of Hachette Book Group. All rights reserved.
