Our Current Expertise Crisis

I’m in a Facebook group for people with my eye condition, Lebers Congenital Amaurosis or LCA. On Monday, someone posted in our group, noting that the reported incidence of LCA has increased in the last two decades. She wondered whether this was related to increased vaccine use. Astonished, I looked at her profile, and found several posts condemning “big pharma, CDC, WHO, and Bill Gates” for orchestrating the current COVID-19 lockdowns.

I’m not giving anti-vax ideologies any space on this blog. They not only endanger people’s lives, but they are deeply ableist in the implication that it’s better to risk a deadly disease than to develop a disability, be it autism, LCA, or anything else.

But this post is indicative of a more disturbing intellectual crisis. We are embroiled in a crisis of truth. In recent months, as real news has been declared fake, fake news becomes real. A fringe of individuals and groups are rejecting the validity of widely accepted public health expertise. We live in an age where anybody with a computer or smart phone can tout themselves as an expert. They can do a little online research, learn some popular medical jargon, get on social media and promote any number of conspiracy theories or quack treatments to their followers. These individuals are accepted and believed by followers who have lost faith in the traditional expertise system. And perhaps the most vulnerable victims of all are disabled people and our caregivers, people who have been let down by the established experts for centuries.

Within the last century, science and research were used to justify the superiority of one race over another, and eugenics against racial minorities, disabled people, and other groups. There was a time, not too long ago, when the mainstream guidance was to put disabled children into segregated schools and institutions away from their families. More recently, in the age of mainstreaming, people with titles and degrees still advocate normalization as a key part of educating disabled kids. I’ve lost count of how many times I’ve heard a parent say that “We trusted the experts with our disabled child, and now our child is suffering.” Certified educators are requiring many disabled children to struggle to read print with very little usable vision, to speak words they cannot hear, or to suffer through long Applied Behavior Analysis (ABA) regimens designed to hide their autistic traits, for instance.

For far too long, nondisabled experts have used science to justify harmful, ableist practices affecting our lives. Consequently, disillusioned parents may be taken in by the promises of self-proclaimed experts professing to know what caused their child’s disability or how to cure it. Further, many disabled activists have become wary of the natural and social sciences. In recent months, the number of science skeptics is growing at an alarming rate.

Sure, scientific studies can lead to flawed conclusions. Consensual “best practices” can be flawed as well. But that’s a consequence of the human beings running the studies, and their biases, rather than the science itself. Ironically, anti-vaxers often accuse vaccine researchers of conspiring with vaccine makers to fabricate results, but the father of the anti-vax movement, Andrew Wakefield, was himself found to have engaged in blatant fraud.

I’ve heard people criticize scientific bodies, like the CDC, under the logic that because recommendations are constantly changing, we shouldn’t take them too seriously. But this continual change and adjustment is part of the scientific process. As new evidence is acquired and incorporated into older understanding, our models and theories continue moving closer to the objective truth

Disability-related expertise needs to change with the times, too. In my opinion the answer is not to reject bodies of expertise or to make anyone and everyone an expert. I believe we need to continue with the scientific process, but we need to involve disabled people in every level of that process. Science can be employed as a valuable tool to aggregate and quantify the lived experiences of millions of disabled people. We as disabled activists know what kinds of contemporary questions are worth asking. By partnering with scientists and policymakers, we have real potential to shape the future for disabled people around the world.