We find ourselves in the middle of a pandemic that we were not prepared for. As we think about how to best make public health decisions for the future, we must grapple with America’s ableist past.
Disability self-advocates often have limited chances to express themselves and develop critical expressive skills when it comes to their health. This pandemic serves as a monumental opportunity for people with differing abilities to consult their doctor and other members of their health support team, learn how to advocate for their personal health, and make other informed decisions for themselves.
In addition, for disabled children and adults living in residential facilities or group homes, the vaccine serves as the key to positive communal health outcomes and as a gateway to future community outings. The development of these vaccines allows people to congregate at events and can help people build meaningful social skills again.
But let it be known, that while I as an autistic adult would love to ‘level up’ and reach new Autistic heights, vaccines do not cause autism. Period. While this claim was originally cited in The Lancet in 1998, the study has been overwhelmingly debunked since then.
But the damage has been done. As a result, parents of young children across the country have opted out of vaccinating their children for routine diseases such as the flu, in exchange for the failed promise of their children being neurotypical. The pseudoscience of the so-called ‘anti-vax’ movement which has seeped into parental consciousness for over two decades has now come to fruition.
Officials are begging people to take the vaccine, including the Autism Society of America and over a dozen other leading Autism advocacy groups, yet there is widespread skepticism. A November report from the UK shows that people with disabilities are as much as six times more likely to die from COVID-19. The CDC says this might be due to co-occurring medical conditions.
During the COVID-19 pandemic, some people have said that the vaccine is dangerous, that the approval process was rushed. While Dr. Anthony Fauci has insisted the process was scientific and accurate, there is a darker truth to the hesitations of people with differing abilities, which is based in oppression past and present around the world.
The term Eugenics, coined in 1883 by Charles Darwin’s half-cousin Sir Francis Galton, refers to the idea that the human race can be improved through breeding out undesirable traits. The American eugenics movement took off in the early 20th century and sought to breed out disobedience and ‘immorality’ during capitalist America’s boom period.
In other parts of the world, Autism was both developed further as a diagnosis, and simultaneously killed off intentionally during Nazi rule to fit national goals. In Edith Sheffer’s book ‘Asperger’s Children,’ she tracks the development of the Asperger diagnosis (broadly defined in DSM IV) and ties the murder of disabled children to the communal will of the Reich.
More recently, in 2011, UMB’s autism research neighbor to the East, Kennedy Krieger Institute, was named in a lawsuit that found more than 100 black children, all of whom were 5 years of age or under, were exposed to high levels of lead unknowingly as part of a study. The parents were told the houses they were moving into were safe.
The keys to getting people in the disability community vaccinated are education, relationships, and community partnerships. On a systemic level, vaccine rollout must be synchronized and methodical. But getting the vaccine to the masses has been slow and riddled with setbacks.
We can combine these two levels of analysis and include perspectives from people with disabilities in the distribution of vaccine output because of the gifts of pattern recognition in many Autistic people. The systematic oppression facing the disability community limits positive health outcomes and challenges self-advocacy skills every day.
If there is anything good about this pandemic, it is that full participation of people with disabilities in health decision-making and technological invention has a chance to be prioritized.
We have the vaccines now that work with over 90% effectiveness. But, past oppression has left its mark on the trust between the disability community and the medical establishment.
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