Part I: Being Disabled is Damn Expensive!
The parts of being disabled that no one wants to hear about.
I was raised in a very traditional family in which conversations about money were strictly forbidden. I remember inquisitively asking my father how much money he made only to be immediately reprimanded. Money was something that you just don’t talk about. It’s gauche. It’s poor taste. Comments about those in financial hardship were made with knowing glances and insinuations instead of transparent discussions. Through my late teens and early adulthood, I adopted this approach. That is, until one thing changed my viewpoint forever: my disability.
Beyond the physical and mental burdens, the rampant discrimination, and the institutionalized lack of accessibility, being disabled is just so damn expensive. Between medications, doctors’ appointments, specialist appointments, testing, imaging, physical therapy, and mobility aids, my disability costs my partner and I almost 1/3 of our total income. Because I have a rare condition, I often have to travel extremely far to see specialists (for example, my geneticist is an 8-hour drive away). After figuring in travel costs and incidentals, my disability takes away at least half of our income. Unreasonably, the university where I work only offers a supplemental stipend for having dependents, but not for having a disability. I staunchly believe this should change.
It is crucial that the financial burden of being disabled is considered when determining stipends and salary. Disability and poverty are inextricably linked, and by refusing to account for this connection, we solidify its inevitability. Currently, having a disability means you are three times as likely to be impoverished, and over two-thirds of people in poverty have a disability. Additionally, the numerous side effects of being destitute are far more devastating for a disabled person. Having no savings means emergency surgeries, ER visits, and unexpected injuries become ruinous. The inability to afford good health insurance leads to substandard care or the accumulation of further debt. Furthermore, rampant discrimination and institutional biases often prevent disabled people from finding steady, gainful employment in the first place.
Although the American with Disabilities Act (ADA) prevents employers from discriminating against people on the basis of their disability, disabled workers are frequently restricted by bigoted hiring practices. Even if they do get hired, a 1939 federal law allows employers to pay disabled workers less than minimum wage (a ‘sub-minimum wage’). The average sub-minimum wage? Just $2.15/hour.
Of course, there’s always Supplemental Security Income (SSI). However, not only is applying for SSI an extremely complicated, arduous process, but to have any chance of success, the applicant needs a lawyer and often is still declined multiple times before being accepted. Again, this means more money. Even if one does get granted SSI, the applicant is limited to $2000 in assets in order to qualify. This amount was set in 1972 and, despite inflation, has not been raised. This financial limit precludes people with disabilities from becoming financially stable and reduces their chance of attaining financial independence.
In order to support people with disabilities more effectively, the SSI asset limit needs to be raised. Additional stipends or grants must be offered to offset the financial burden of being disabled. This is especially true in academia, in which graduate students are often paid a stipend that is well below a living wage. These outdated, unreasonable compensation packages prevent people with disabilities from moving forward in academia. In STEM fields, for example, the percent of people with disabilities drops from 10% at the undergraduate level to just 1% of PhDs.
Personally, I would not be able to attend graduate school if not for having a partner who effectively doubles our income. Even then, the sheer amount of medical debt I accrued in my 4 year path to diagnosis prevents us from having any degree of financial stability. For example, I usually cannot afford textbooks, and I am often prevented from participating in networking and research opportunities because of the cost. Beyond that, the pernicious mental and physical consequences of living paycheck to paycheck are well-documented, but for someone with a disability, they become life threatening. This is an egregious example of institutionalized ableism, and the secrecy protecting it is systematically preventing people with disabilities from escaping poverty.
The solution is clear: we must refuse to stay silent about money, so we can illuminate the extent of financial ableism. We must begin providing compensation and monetary support to people with disabilities. We must pressure our governments to address bigoted hiring practices and outdated laws.
Otherwise? We confirm that disabled lives have no value, and we further reinforce the eugenic underpinnings of modern society.