Accessibili-tea: Co-pays, ‘passing,’ and everything in between

Abby Fournier

Privilege exists in the disabled community, a fact not considered by non-disabled people who treat disabled people with condescending pity. To be clear, my disability itself is not a privilege — qualification for closer parking spots is not at all worth the neverending pain that accompanies my diagnosis. People with disabilities have varying degrees of privilege, and it more often than not is a matter of life and death. Privilege affects access, resources, health care, and every other aspect of daily living. It controls the progression of your disability and how it impacts your life. Privilege and disability are inherently connected; they feed off each other and one cannot be addressed without the other. Two types of privilege have become quite evident during my time on this campus: identity-based privilege and diagnosis-based privilege.

Identity-based privilege, as I define it, refers to privileges from other, non-ability parts of your identity. This can include class, race, gender, sexual orientation, and more. A wealthy cis-straight-white male benefits from quite a bit of privilege just from identity, regardless of ability. I’ve included a summary below of some of the privileges that differentiate the experiences of people with disabilities, and their associated access benefits. This list is not at all exhaustive and I am sure because of my privilege — upper-class, healthy parents, white, cis, English-speaking, educated, average body shape — I have missed a great deal. Consider this a formal invitation to, if you feel comfortable, able, and willing, contact me so we can together think more about privilege and disability, particularly on this campus.

The primary benefits of each dominant identity trait are of access. The ability to afford copays or non-prescription medical supplies can completely change how disability is experienced. Access to my own car and to disposable income has allowed me to travel home for every medical appointment — sometimes even once a week — so I can see my home doctors and receive the best care possible. That is not the norm for all people with disabilities. (Side note, even the “best” doctors have tons of problems so improving access to doctors alone will not solve disability inequality.) Our healthcare system is extremely biased and difficult to access, so any advantages in health care and treatment are a significant privilege.

I define disability-based privilege as privilege that arises from having a formal diagnosis and/or having one diagnosis as opposed to another. With the way accommodations function in education and the workplace, a formal diagnosis is powerful. The College’s Office of Accessible Education (OAE) requires documentation of a disability in order to receive certain accommodations. For those who can’t afford expensive, out-of-pocket, hard-to-schedule evaluations, OAE has funds set aside. However, the fund is limited and supposedly ran out this year — which was for many, a catastrophe. 

Additionally, the Graduate Record Examinations (GRE) requires significant formal documentation to apply for testing accommodations. Without the funds for an evaluation,  students whose future plans require the GRE are out of luck and must take the test without proper support. Having a formal diagnosis is a privilege, especially in academia.

To some, a diagnosis determines how they will engage with the disabled and neurodivergent community. Diagnosis sometimes leads people to question if their disability is “bad enough” to use the accommodations they qualify for, regardless of their lived experience. However, disability is not a linear scale from “least-bad” to “most-bad” because disability cannot be objectively positive or negative or be compared between people; it is an apples and oranges situation. There is definitely a shared experience of being disabled that can unite the community, and it is incredibly valuable. Nevertheless, the disabled experience varies widely based on each person’s specific diagnosis and how it manifests in their body. One instance of this is the visible/invisible binary. A visible disability can be a privilege when it results in increased understanding and compassion. An invisible disability can also be a privilege when it protects against ableist discrimination. This does not mean that having one disability as opposed to another makes someone “lucky” or “unlucky,” just that different types of disabilities have different privileges depending on the situation.

The Accessibili-tea on campus is that students with disabilities are treated as a homogenous group when in reality, a wide range of support is needed. While some students with disabilities may have the privilege of a diagnosis and just need OAE to sign off on their accommodations, some students may not even be aware of their disability and the services that could be available to them. This is yet another reason why it is crucial to include people with disabilities in all planning, evaluation, and communication at the College. If the senior staff cannot even admit their fault and lack of ADA knowledge, how are they supposed to support students with multiple intersecting needs? We need to be in the room where it happens.

***

A working summary of privileges, in no particular order, and their effect on disability:

Privilege Access benefits
If you had this privilege, what would you get?
Class – personal
[Disposable financial resources]
Ability to buy more advanced medical supplies & technology, choice of service providers/treatment, flexible job with time off for medical appointments, ability to afford cost of transport to appointments
Class – family
[Parental education level, home, investments]
Experience with and knowledge of health care system
Race
[Racial identity and race presented]
Lack of discrimination based on skin color
Gender
[Male-identifying and/or cisgender]
Doctors believing you, gender-affirming environment, appropriate medical & psychological support
Language Knowledge you need is in your (and your caregivers’) first language
Education Ability to assess doctors’ evaluations and understand medical jargon, previous basic health education
Diagnosis
[One diagnosis compared to another]
More awareness of your disability → more understanding, more (or less) visibility, ability to “pass” as non-disabled/neurotypical
Diagnosis
[Just having a diagnosis]
Qualification for benefits, receipt of accommodations, knowledge of what is causing your experience, acceptance into disability community
Size
[5’3”-5’10” tall skinny people with 2 arms, 2 legs, and a straight spine]
Ability to fit into medical equipment/hospital beds/transport vehicles and other places, ability to use public structures such as tables, swings, doorways, and aisles

 

Abby Fournier ’21 is a political science major from Natick, Mass.