8 Costs of Being Disabled and Paying the ‘Disability Tax’
Table view with laptop, papers, coffee mug, a person using a calculator while holding cash in hand. (Canva)
By Arielle Dance
This piece was originally published in Ave Astra’s Volume 03.
“The term "disability tax" or "disability squeeze" means that I am forced to spend extra money simply to live my life in my body.” - Sarah
Everyday, disabled people across the globe are paying both tangible and intangible unexpected costs. These significant extra expenses necessary to live and survive are known as disability tax – an expense most non-disabled people never experience.
Members of the Diversability Leadership Collective shared what the disability tax means in their lives. From healthcare expenses to the cost of living, respondents with varying disabilities have experienced additional hardships trying to manage the financial implications of their disabilities. These are examples of disability taxes in their lives.
Costs of Medical Expenses
Many disabled people have substantial medical expenses to support their diagnosis. From medications to assistive devices, expenses can cost thousands per year. Although people may have public or private insurance that cover costs, they often leave gaps that require self-pay.. Beth, who has Bipolar II Disorder, has struggled to care for herself properly, largely because of the high cost of medication and mental healthcare. “Even when I wanted to maintain consistent treatment, the financial burden often made it impossible to do so.”
Zoann, someone who lives with asthma, Cushing's Disease, and significant mobility limitations, pays out of pocket for several over-the-counter medications, prescriptions, and supplements. In addition, Zoann shared that, “I have also paid for my own electric scooter and wheelchair so that I can get around my house and to medical appointments. I am not able to save money for a new scooter.” Sarah, who is paralyzed from the neck down due to a spinal cord injury, shared that her biggest barrier is being able to afford to drive. She needs specialized modifications to any vehicle she drives at a cost of nearly $90,000. “It would be amazing if there was a program disabled people could apply for to receive funding for adaptive car modifications.”
Costs of Specialized Care
In some cases, disabled people need specialized care which may be out of network or outside of their geographic area. The costs of specialized care not covered by insurance can be a substantial financial burden. Many people travel outside of their state or even their country for specialists. With these barriers in mind, frequent visits can be especially costly. Sarah shared, “I visit the doctor much more often than most people in general. I am fortunate to have health insurance, but the cost of my care is not always covered, resulting in lots of out of pocket healthcare expenses.”
Gaining and Maintaining Work
Many disabled people struggle with employment or maintaining work due to the effects of their disability or bias in the workplace. In some situations, disabled employees are forced to prioritize their health over maintaining employment. Despite the financial impacts, people may have to sacrifice their professional growth in order to care for themselves, travel long distances for appointments, or qualify for government assistance. Additionally, disabled people who receive state financial support are limited in their hours and income.
Zoann, who is unable to work full time and relies on state support, shared that she is “stuck in a system which penalizes a disabled person who wants to return to work part-time.” She's left with the impossible choice of receiving care with a $2000 cap on her bank account or pursuing professional growth free of the $1900 monthly stipend limit, but without the crucial assistance of her caregiver.
Cost of Personal Grooming
For disabled people unable to perform personal grooming on their own, there may be additional expenses for help. Sarah spends extra funds on getting her hair washed and styled and for regular nail trimmings at the salon. She’s able to wash her hair but her disability makes it tiring and difficult. “While I am grateful I am able to afford these extra costs, not everybody can, and they certainly can cause a financial burden for many disabled individuals.”
Cost of Transportation
When driving is not an option for a disabled person, there are costs for transportation. accounting for travel to work, personal connections, and medical appointments, these costs become exuberant. In an ideal world, stipends for transportation for disabled people, reliable public transportation, and cities with safe pedestrian paths could help lower the costs for transportation. Dennis shared, “Since I can't drive and don't live near public transportations, relying on [rideshare apps] living in LA, while living in a low income environment, have been difficult and expensive, and inaccessible. [I] can't go out as much and have to rely on others to get around.”
Cost of Meal Delivery
With the climbing costs of groceries, affording groceries is challenging especially for people on fixed incomes. Additionally, for some, the physical task of cooking is challenging. Sarah acknowledges, “my disability limits my ability to cook for myself, so I often utilize food delivery services for meals. [Food delivery service] is much more expensive than cooking at home or picking up food at a restaurant.” When grocery shopping is an option, Sarah purchases frozen meals and pre-cut fruits since she’s unable to cut fruit on her own. “Purchasing pre-cut fruits and frozen meals is much more expensive than the alternative.” Selecting healthier options also comes with additional costs. .
Costs for Caregiver
The need for a caregiver is a unique expense for some disabled people. Whether it’s someone to help with grooming, household tasks, or in-home medical support, the cost of a caregiver is not always covered by insurance. Zoann wants to return to the workforce, however, “in order to keep my caregiver and medical services, I am not allowed to make more than $1900/month or have more than $2000 in my bank account. It means paying my caregiver gas money to drive me to specialist appointments in the city which is 50 miles away from where I live.”
Cost of Mental Health
Financial hardship can have extreme negative impacts on someone's mental health. Dennis believes that his mental health has suffered greatly due to the stress of debt and paying for his needs. “[Worrying about debt makes] my physical health worse and increases stress and anxiety, grief, and anger.”
These and other additional costs of being disabled often cause have caused financial strain and debt for many people; To address these high costs of living as disabled people, respondents agreed that universal free healthcare and federal stipends for disabled people would be beneficial. Programs that help address poverty and debt in the disabled population would help support this community as well.
Diversability would like to thank DLC Members for sharing their experiences for this piece.