Why I Advocate Against Ableism

Ableism is the harmful, pervasive and normalized culture surrounding ability and disability. Let’s clear a few things up before we begin – ableism is no single person’s fault. It is not necessarily intentional (though it can be) and it intersects with every facet of a person’s identity (sex, gender, race, etc.).

When we are growing up, our parents, friends, teachers, church groups, youth clubs and media teach us what is “normal,” including the limits and expectations people have. For example, a “normal” expectation is that a person should be able to eat. But there are plenty of people out there who cannot eat either due to a mental illness or GI disorder. We expect people to eat and be able to do so. Until we don’t, because we are exposed to someone who cannot. Up until that point, our expectations have been defined, and sometimes people don’t understand when someone can’t meet the expectations (climbing stairs, not sleeping inordinate amounts, hearing, walking, seeing, etc.).

Why is this problematic?

No one is immune to disability, mental illness or chronic illness. Tomorrow anyone could get hit by a bus and become permanently disabled. So I am not advocating against ableism just for myself, or disabled people like me. It’s for those of you who are abled too, because one day you might be disabled, mentally ill or chronically ill.

When people don’t understand why someone can’t meet abled expectations, it manifests as overt and covert marginalization and denigration. We see it often – someone leaves a s***ty note on the windshield of a person’s car because they have a disability parking permit but they “look fine.” Even though they had heart surgery recently, or they have a prosthetic leg you can’t see, or they might collapse upon standing and getting out of their vehicle. This is just one blatant example of individual ableism.

There are many examples of covert ableism and how it can be pervasive and dangerous. It took 8 years of active pursuit, but 22 years total, for me to be diagnosed with Ehlers-Danlos
syndrome. Part of that is because information on EDS is limited, but a lot of it is the idea that I had to look some certain way to be “sick.” At 15, I was told it was likely my pain was psychological, despite zero tests actually being done. This is an intersection of misogyny and ableism. I was a female young teen, so obviously, the only thing that could possibly be wrong was psychological.

It’s important to clarify there is systematic ableism (lifetime caps on insurance, no coverage for pre-existing conditions, lack of accessibility in certain schools, careers, etc.) and individual ableism (the examples I provided above). The construct of ableism is evolving and it has many historical roots, but it is important to dismantle it today.

Although my limits are different than an abled person, I am still human and I still matter. Disabled people matter. Mentally ill people matter. Chronically ill people matter.

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