Living with a disability or chronic illness comes with a unique set of challenges. They can extend beyond the physical and emotional aspects of the condition. One often overlooked aspect is the financial burden that individuals with disabilities face. These hidden costs are known as the “Crip Tax” or “Disability Tax” — terms used to describe the additional expenses that people with disabilities and chronic illnesses bear simply because of their health conditions. In the United States, one in four adults are disabled. Recent research has shown that households with disabled adults require an average of 28% more income – an extra $17,690 USD per year – to achieve the same standard of living as a comparable household without a disabled member.
The Crip Tax:
The term “Crip Tax” was coined to highlight the extra costs that individuals with disabilities incur, above and beyond the expenses faced by the general population. Yes, it literally stands for ‘cripple tax’. While I don’t love that phrasing, it does tackle an important topic. It’s also helpful to use because often the term ‘Disability Tax’ is used in reference to a disability tax credit. Crip Tax costs can be attributed to a variety of factors. These range from medical supplies and assistive devices to the limitations on savings and employment opportunities.
1. Medical Expenses:
Specialized Equipment and Devices: Individuals with disabilities often require specialized equipment such as wheelchairs, hearing aids, or mobility aids. These devices are essential for daily functioning but come with a hefty price tag. For example, a power wheelchair or electric wheelchair can cost upward of $10,000. For me, I use a feeding tube. The machine itself costs about $1500. Additionally, I need to purchase supplies like feeding tube bags and syringes, which cost about $600 every 3-4 months.
Adaptations to Living Spaces: Many individuals with disabilities need to modify their homes or living spaces to provide easier access and accommodate their unique needs. This may involve installing ramps, handrails, or other accessibility features.
2. Other Healthcare Costs:
Medications and Treatments: The ongoing need for medications and medical treatments can place a significant financial strain on individuals with chronic illnesses. These costs may not always be covered entirely by insurance plans. For example, my nutritional formula, which is considered a life-saving treatment, costs about $1500 a month. In Ontario, the formula is only covered by insurance for certain people.
Therapies and Rehabilitation: Physical, occupational, or speech therapies are crucial for maintaining and improving the quality of life for many individuals with disabilities. However, these therapies often come with out-of-pocket expenses.
Travel: An often forgotten extra cost is that of traveling to and from medical appointments. You may need to take time off work for appointments. You might need to take a taxi to get there, or pay for gas and parking. Hospital parking can get really expensive. If you have more than one condition, you may need to see specialists at different hospitals or clinics. Some may not even be in the same city you live in. Patients often travel several hours to see their healthcare provider, which creates an added cost. If you can’t drive after a procedure or test, you may need to get someone else to take time off work as well, or book a night in a hotel, which obviously, costs money.
3. Loss of Income:
Unemployment: Many people with disabilities find it challenging to secure employment due to discriminatory practices or inaccessible work environments. This results in a loss of income and increased financial dependence. Many employers are very inflexible and don’t allow their employees to take the necessary time off to attend appointments or rest and recover. It can be very difficult for people with chronic illnesses and disabilities to partake in a traditional workplace. As such, many remain unemployed, which can lead to financial stress.
Underemployment: Many people with chronic illnesses and disabilities who are employed remain underpaid. They may need to settle for jobs that they are overqualified for (and thus are considered under-employed), but in 2020, disabled workers were only paid 74 cents for every dollar paid to their non-disabled peers. The gap increases when you include gender and race. There is a major income gap for those with disabilities.
4. Other Costs:
Housing: Another huge cost many don’t consider is housing. While everyone needs housing, very few homes and apartments are disability-friendly. The average home is not built to, for example, fit a wheelchair. Doors are not wide enough, handles are not low enough, and stairs are… impossible. Another example is that people with joint issues or limb differences may need all the handles in their homes, from doors to cabinets, to be moved in height or lightened in weight.
Food: Many people with disabilities rely on food and grocery delivery services, especially since the pandemic when it became especially dangerous for them to leave their homes. Even if someone does not need to follow a specialized diet, there is a huge surcharge when using these services.
My Personal Experience:
As a disabled person, I am personally affected by the Crip Tax, I can attest to the overwhelming expenses associated with managing a chronic illness. In my case, the cost of feeding tube supplies and formula adds an extra layer of financial burden. Despite living in Canada with its healthcare system, the coverage for these supplies is limited, leaving a substantial portion of the cost on my shoulders. This is a reality faced by many, where insurance coverage may not extend to all necessary medical expenses or may vary based on individual circumstances. I take several prescription medications for my illness, only some of which is covered by insurance.
I’ve had to pay for extra baggage when I travel so that I can carry all my formula with me. I’ve had to pay for Ubers when I’m too sick to take public transportation. I have to buy wound supplies like gauze, tape, and bandages to cover my feeding tube every day so that it doesn’t leak onto my clothing.
I’ve spent hundreds of dollars on high-nutrition drinks like Boost and Ensure in a bid to try and avoid needing a feeding tube. I have paid exorbitant shipping charges to have extra high-calorie boost shipped to me from the United States as it’s not available in Canada. And I’ve even purchased new furniture like a cabinet to hold all of my medical supplies and a chair for my shower.
And I’ve spent hundreds more on things to try and relieve my symptoms. From over-the-counter pain and nausea medicine to Gatorade and Pedialyte, to heating pads and ice packs, being sick is literally so expensive. These additional costs are ones that I would not have if I was healthy.
![A woman is sitting at a table counting cash. She has a notebook and pen in front of her. Only her torso is visible. She has cash bills in her hands and more bills on the table.](https://i0.wp.com/cdn.shortpixel.ai/stsp/to_webp,q_lossy,ret_img/https://i0.wp.com/dealingwithdisability.ca/wp-content/uploads/2023/12/Crip_tax_disability-scaled.webp?resize=300%2C200&ssl=1)
Disability Benefits:
Applying for disability benefits is much harder than anyone ever expects. In the United States, getting approved for SSDI disability benefits can be a huge and arduous task. Many people who apply have to wait months or even years only to have their applications denied. Fortunately, some hospitals have their own social worker or financial services to help individuals navigate the system and try to ease the burden on individuals.
In Canada, no provincial support program pays nearly enough to live off of. There is a huge lack of resources and social programs for those with disabilities. Additionally, for many with disabilities, it is impossible to have any kind of meaningful savings due to the strict rules that apply when receiving government assistance. Many have absolutely no kind of breathing room when it comes to extra or unexpected expenses. With the increasing cost of living, people with chronic illnesses and disabilities are going to struggle even more.
Final Thoughts:
The Crip Tax is a stark reminder of the financial inequalities that persist for individuals with disabilities and chronic illnesses. As we strive for a more inclusive society, it is crucial to recognize and address these additional costs. Advocacy for better insurance coverage, accessible employment opportunities, and increased awareness can contribute to reducing the burden of the Crip Tax, allowing everyone to live a fulfilling life regardless of their health condition.