What is ableism, anyway?

 In the last few years, I have started conducting “me-search.” I have had the privilege to collaborate with friends, colleagues, mentors, and role-models on projects broadly related to barriers faced by people with disabilities. As part of my “me-search,” I recently read a paper about a new self-report measure of symbolic ableism adapted from a measure on racism. 

Reading Drs. Friedman’s and Awsumb’s article about measuring symbolic ableism got me thinking deeply about the construct of ableism in relation to my lived experience. Before I share more, I want to acknowledge that many of these ideas are not my own, and have been shared by others, including these wonderful researchers in their piece. I am using their operationalization of ableism as a framework, and I have expanded on their constructs based on my observations, learning from others with disabilities, and growth in therapy.

The authors explore how opposition to disability rights seldom has been marked by overt displays of bigotry or hostility but instead is marked by outward warmth and support rooted in pity and paternalism. One of the sub-scales of the adapted ableism measure is called “Recognition of Continuing Discrimination." Whereas, in the original measure about race, this sub-scale was “denial of continuing racial discrimination.” Ableism is so pervasive and insidious that most are not even aware of its existence, let alone deny its presence. 

So what is this subtle form of oppression referred to as ableism? According to this scale, symbolic ableism involves individualism, a failure to recognize continued discrimination, lack of empathy, and believing people with disabilities make excessive demands. Let us unpack these components of ableism and look at some examples. 

Individualism

Ableism is upholding the rigid individualism that suggests everyone can and should be able to pull themselves up from their bootstraps on their own and without support. Ableism is believing success is only dependent on hard work. Ableism is believing people with disabilities are not at any form of systematic disadvantage; we live in a just world and people get what they deserve. If you fail, that is your problem. 

But, people cannot simply achieve no matter what happens to their bodies and minds. Although some illnesses can be cured, many people cannot simply overcome their disability. I will never have sight. And no matter how hard I try, I will never be able to do visual tasks. Individualism would say this is my weakness and my fault. Individualism would suggest that any failure is my doing. For a long while, I believed that narrative. I thought it was my responsibility to work twice as hard to compete. If I could not do something, it was because I did not try hard enough. Over time, though, I have come to accept I am a blind person in a predominately sighted world. I will always be at systematic disadvantages. No matter how hard I pull up on my bootstraps, I will not be able to lift myself out of this body. More radical still, I would not want to lift myself from this body. Our ableist society may say there is something wrong with me, but I choose to appreciate all my body gives me.

Recognition of Continuing Discrimination 

As is true across the “isms,” ableism involves gaslighting. People with disabilities are told they complain too much and their inability to get ahead is due to their faults. Ableism is the lack of recognition of systemic inequality for people with disabilities.  

Ableism often involves outward warmth, support, and appreciation. Most would say they would never want to disadvantage someone who is in a wheelchair. At the same time, that same person may leave a rental scooter in the middle of the sidewalk or take advantage of a friend’s handicap placard without seeing the contradiction. I have often been told, “just let me know and I will do whatever I can to help,” to then be told that my requests for accommodations are too inconvenient, burdensome, or difficult to provide. People believe they care deeply for people with disabilities while also failing to comprehend how their actions contribute to continued discrimination for people with disabilities.

Empathy for Disabled People

Ableism is believing that people with disabilities are incompetent and in need of assistance. Ableism is believing that the able-bodied know what people with disabilities want and need.  Ableism is associated with pity and paternalism. Ableism sends the message that people with disabilities are victims whose lives are inherently tragic. 

“You’re blind? But you’re so young! I’m so sorry!” “If I were you, I could not even get out of bed in the morning let alone do what you do.” Veiled in sympathy and flattery, these remarks lack empathy for the experience of what it means to be someone with a disability. I am living my life the best I can, just like everyone else. Some days it is easier to get out of bed than other days. Very rarely is that due to my disability.

In general, the disadvantages due to disability are often exaggerated. The suffering caused by ableism is under-recognized, but in my experience, the daily suffering caused by disability is overestimated and misunderstood. My struggles are not because I cannot see; my struggles are because systems are designed for people who can see and often people are reluctant to accommodate to include my means of interacting with the world. 

Excessive Demands

Ableism also takes the form of thinking people with disabilities are asking for too much and a drain of the system. People with disabilities are taking advantage of testing accommodations to get ahead. People with disabilities are exercising an unfair advantage by having extended time on classroom assignments. Receiving disability benefits from the government is a waste of tax dollars and enables people to be lazy and not work. 

Although the examples above demonstrate more flagrant forms of ableism, I am often subtly blamed for making excessive demands for accommodations. It is too much to send a digital copy of a paper handout before a meeting begins. It is too inconvenient to use the software that works with my accessibility tools. It is unreasonable to require a PDF to be accessible by a screenreader. Believing people with disabilities are making excessive demands is ableist. 

I am still wrapping my mind around the contradictions of ableism: people with disabilities need to work harder and also are pitiful and tragic; being disabled seems insurmountable, and if a person with a disability cannot overcome that is their fault; people with disabilities deserve support and also make excessive demands and drain resources. Ableism is comprised of seemingly paradoxical beliefs, and all of them oppress people with disabilities. Despite being painful at times, I am profoundly grateful to have the opportunity to contemplate the complexity of ableism in “me-search” alongside my personal journey.