The Crip Tax: Unveiling the Hidden Costs of Disability

A close-up image of a person in a white shirt holding a fan of hundred-dollar bills in their hand. The focus is on the money, showing several crisp banknotes prominently featuring Benjamin Franklin. The background is blurred, drawing attention to the hand and the cash.

Today, I want to talk about what is colloquially known in our community as the "Crip Tax." This term encompasses the increased cost of living that accompanies being disabled. Whether it’s accessible housing, home modifications, therapies, treatments, medications, or elevated electric bills to maintain medical equipment—these costs are substantial.

Selma Blair shared her struggles with the financial strain of managing her multiple sclerosis with the The Hollywood Reporter: "People perceive you as rich and famous but there were many years I’d have to take off work that deeply impacted [me]. If I don’t [get] my SAG-AFTRA insurance, then I don’t get my blood products." This sentiment resonates deeply with many of us who face similar financial burdens.

Accessible housing is often limited to more expensive areas, and making one's home accessible through modifications can be financially draining. The cost of mobility aids, which are often not covered by insurance, further strains our finances. But the Crip Tax extends beyond monetary costs. The psychological impact of being perceived as exploiting our disability for preferential treatment, when all we seek is basic equity, is profound. We face conscious and unconscious biases that affect our dating lives, career progression, and personal relationships.

In the workplace, requesting necessary accommodations can be a delicate balance. The fear of being perceived as a burden looms large. If we ascend to positions of leadership and conquer these prejudices, we are often met with accusations of tokenism and claims that we are less qualified and less deserving. On the other hand, asking for too many accommodations can lead employers to assume we will underperform. Add to that the often bureaucratic and adversarial nature of making such requests, and many of us simply won’t, effectively making our jobs harder and feeding into the false narrative of our capabilities.

Additionally, the medical field often discounts our experiences. If ailments aren’t found on routine tests, they are frequently deemed imaginary. This constant need to defend our reality is exhausting. 

Socially, the unpredictability of our health means we sometimes have to decline invitations, leading to perceptions of flakiness. Chronic pain and fatigue turn every decision into a game-time choice, based on our body's state that day. The Crip Tax also includes spending time defending yourself to people who don't believe you, expending extra energy from our already limited supply, defending our right to exist.

This tax is a lifetime of financial, psychological, and emotional burdens that seem only to increase.

What did I leave out? Sound off in the comments. Additionally, share your thoughts with NPR for an upcoming feature story.

Selma Blair on Getting “Back on Track” With MS Treatment: People Don’t “Get How Expensive It Is to Be Disabled”

Unseen Costs: Navigating Student Debt and the Disability Tax in America

An artistic rendering of a wheelchair user in a cap and gown. His hands are clasped and he looks depressed. Above him, a chain link.

As we enter the final week of May, dedicated to highlighting mental health awareness, it's essential to discuss student loan debt and the "disability tax" — colloquially known as the Crip Tax.

This invisible tax represents the extra expenses incurred by those with disabilities, ranging from increased transportation costs and frequent medical appointments to accessible housing requirements and assistive technologies. According to the National Disability Institute, people with disabilities pay an extra $17,690 each year to maintain a similar standard of living as a household without a member with a disability. When combined with the burden of student loan repayment, the financial landscape becomes increasingly challenging.

An analysis from the U.S. Department of Education reveals a shocking truth — nearly one-third of borrowers hold student loan debt without possessing a degree. Research from the Education Data Initiative found that the average public university student borrows $31,410 to attain a bachelor’s degree. Moreover, the National Center for Education Statistics (NCES) reports that the six-year graduation rate for students with disabilities at four-year colleges is 49.5%, compared to approximately 68% for students without disabilities.

Existing student loan forgiveness programs often overlook these hardships. The Public Service Loan Forgiveness (PSLF) program, for instance, mandates a 10-year commitment to public service employment, a condition untenable for many.

Income-Driven Repayment (IDR) plans, though ostensibly beneficial, have inherent flaws. By concentrating on annual disposable income, these plans can impose disproportionate repayments on disabled borrowers with lower incomes. This issue becomes especially glaring when considering that the labor force participation rate for individuals with disabilities is 38.3%, with an unemployment rate of 7.0%. In contrast, the same statistics for people without a disability are 77.4% and 3.0% respectively according to the latest data from the U.S. Department of Labor.

The Total and Permanent Disability (TPD) discharge — a beacon of hope — fails to provide relief for all. Qualification is often a convoluted process, leaving many behind.

The pending Supreme Court case concerning widespread student loan forgiveness might not benefit many in our community. Why? Because it primarily centers on forgiveness that doesn't affect monthly payments for those of us still carrying debt. In contrast, IDR plans are designed to adjust loan payments based on income, with forgiveness occurring for most at the 25-year mark.

We urgently need further modifications to IDR plans. Calculations should include disability status and consider our elevated cost of living. Incorporating these added costs into the monthly payment formula could provide significant relief.

The weight of student loan debt should not disproportionately rest on our shoulders.

Junk Fees Hit Disabled People Too

The disability community is heavily impacted by the Crip Tax, whether it’s in the form of so-called junk fees or simply a higher cost of living. The toll is physically, emotionally, mentally, and financially exhausting simply fighting for our right to exist.

"President Biden dedicated quite a bit of airtime in his State of the Union address to the Junk Fees Prevention Act, a push to limit hidden fees and surcharges in a number of industries. The proposed legislation would curtail companies from overcharging on things like extra resort fees at hotels, service fees at concerts and sporting events, and added costs charged by airlines so that family members can sit together."
Deepa Shivaram, Emily Olson–NPR

President Biden talked extensively about the Junk Fee Prevention Act in his State of the Union Address. While the White House cited research from the Consumer Financial Protection Bureau highlighting the racial disparities of added fees, the disability community is also adversely affected. We routinely pay the colloquial “Crip Tax” simply to level the playing field.

Consider the most recent data released by the U.S. Department of Transportation that found airlines mishandled 941 wheelchairs or scooters in November of 2022; or roughly 1.5% of mobility equipment. While that number may seem small to non-disabled people, if those were your legs, you’d be more cautious.

Uber settled a multi-million dollar lawsuit brought by the U.S. Department of Justice last year over the illegal practice of wait time fees— disproportionately affecting disabled passengers.

Our hotel rooms often come with increased costs, too. The ADA prohibits charging more for accessible rooms, yet hotels and travel sites try to get away with it anyway hoping uninformed travelers will simply not know the law or be too exhausted to contest the rate hike. I recently lost hours on the phone with American Express resolving excess fees associated with booking an accessible room through their travel portal at Virgin Hotels.

The Biden administration talked about excessive ticketing fees for concerts. Here again, the disability community faces added expenses. We often pay more for our seats because venues do little to verify that the limited quantity of accessible seating goes to disabled patrons rather than scalpers charging a premium. I’m working with local venues in Washington D.C. including Capital One Arena to help address this challenge.

These are just the simple things. Pricer items like healthcare, transportation, and medical equipment are essential, which is why I was glad to see the administration tout a proposed rule change simplifying reporting requirements for the more than 7 million disabled people who receive monthly Supplemental Social Security Administration benefits.

The disability community is heavily impacted by the Crip Tax, whether it’s in the form of so-called junk fees or simply a higher cost of living. The toll is physically, emotionally, mentally, and financially exhausting simply fighting for our right to exist.