By: Jennifer C. Sarrett, PhD
We are currently coping with several nationwide measles outbreaks around the country, as well as abroad. There have been at least 839 confirmed cases this year. There were 75 new cases reported last week alone. These outbreaks are the direct consequence of a strong anti-vaccination movement—one which the WHO has noted as one of the 10 top threats to global health in 2019. People cite many reasons for choosing to not vaccinate their children, and most, if not all, of these reasons are scientifically unfounded. But what is often left out of this discussion is a consideration of how the fears motivating anti-vaxxers to hold on to these theories in the face of discrediting facts reflect deeply entrenched ableism.
Ableism is a preference for able bodied and minded people and discrimination based on the presence of a disability. It is a type of stigma so deeply embedded in our society that it rarely gets called out and many people are unaware of term. Disability labels are often used to disenfranchise other minority communities, such as when women in the United States were not allowed to vote because they were thought to be too ‘feebleminded’ to think through the complexities of politics.
Ableism is everywhere. Restaurants and other public places that have no ramped entry is a form of ableism. Calling a place is accessible because it has a ramp—despite there not being other access features like braille or large print materials, lighting choices, or closed captions—is ableism. Assuming someone is not disabled because you can’t see a disability is ableism.
And the current measles outbreak is rooted in ableism.
Parents choosing not to vaccinate their children because of a fear that the vaccination will cause disabilities, including autism, ‘brain damage’, or behavioral ‘problems’, is a form of ableism. They are telling us that they are more comfortable putting their child and those in the community who are unable to be vaccinated at risk for a dangerous and potentially fatal diseases because they think it’s better than having a disabled child.
Disabilities and people with disabilities are discounted, feared, misunderstood, poorly represented in popular media, objectified, and vastly under supported by our communities.
Fear and distaste for disability is an enormous and largely unrecognized problem. Here, in a country with vast resources and material wealth, it is still considered an overwhelming challenge to raise, care for, and support a child—and then an adult—with a disability. This fear is the result of both a lack of resources and a misunderstanding of what it means to live with a disability.
Addressing the lack of resources for people and families with disabilities is imperative. Our communities need to recognize our shared responsibilities for each other. As of now, when a family has a child with a disability, they often have to fight for resources and accurate information from their health care providers, schools, and governments. And this process is closed off for families with few resources or social empowerment. Even families with these resources struggle to get accurate information about their child’s disability, appropriate education in their local school, or financial assistance from their state for critical resources such as medical devices and respite care.
To overcome the ableism in this process, we need to develop policies that funnel resources into communities for supportive services for families, children, and adults with disabilities. Not only will such policies ensure that having a child with a disability is not significantly more difficult than having a child without a disability, it will help better integrate people with disabilities throughout the community. And integration is the best way to dispel stigmatizing assumptions about life with a disability, which is the second path on which ableism has led to the measles outbreak.
There is a vast misunderstanding of what it is like to live a life with a disability. Even health care providers, with whom people with disabilities frequently interact, largely assume that people with disabilities live less fulfilling and rewarding lives than people actually living with disabilities report.[2, 3] And when disability is in the media, we most often encounter images of people with disabilities struggling or being the object of pity.[4, 5] Or—on the opposite end of the representational spectrum—human interest stories celebrating people with disabilities achieving some, often mundane, task as ‘inspirational’. As many disability advocates have pointed out, this type of representation, called inspiration porn, serves to reduce people with disabilities as objects that are promoted only to make non-disabled people feel better about themselves: “If that poor disabled person can do [X] then I can certainly do [Y]!” and other such nonsense.
Disabilities and people with disabilities are discounted, feared, misunderstood, poorly represented in popular media, objectified, and vastly under supported by our communities. And so here we are with a measles outbreak. One that is driven by the strong desire to avoid disability. One that is founded on ableism. And one that puts lives at risk. The anti-vaxxer movement is yet another message sent to everyone, including the disability community, that disability is a fate worse than disease and death. And the outbreak is another indicator of how ableism is dangerous to us all.
- Kang, Ewing-Nelson, Mackey, Schlitt, Marathe, Abbas, & Swarup. (2017). Semantic network analysis of vaccine sentiment in online social media. Vaccine, 35(29), 3621-3638.
- Corrigan, P. (2014). The stigma of disease and disability: Understanding causes and overcoming injustices (First ed.). Washington, DC: American Psychological Association.
- Werth, J.L. (2005). Concerns about decisions Related to withholding/withdrawing life-sustaining treatment and futility for persons with disabilities. J. Disability Policy Studies, 31.
- Schatz, J., & George, A. (2018). The image of disability: Essays on media representations. Jefferson, North Carolina: McFarland & Company.
- Garland-Thomson, R. (2002). The politics of starting: Visual rhetorics of disability in popular photography. In Snyder, S., Brueggemann, B., & Garland-Thomson, R. Disability Studies: Enhancing the Humanities. (pp 56-75) New York: Modern Language Association of America.
Dr. Jennifer Sarrett is a Lecturer at Emory University’s Center for the Study of Human Health. She studies and teaches disability studies, neuroethics, bioethics, human rights, and criminal justice. You can follow her on Twitter @sarrettspeaks or go to her website at www.jennifersarrett.com