No, I Won’t Shut Up About Rare Diseases: This Is Why

[Usually, this is a writing blog. But today it’s a soap box]


In case you’ve just emerged from the wilderness, the United States Congress is currently debating, like a crew of cheap Hollywood villains, whether or not millions of Americans should be allowed to access basic healthcare. Disability* advocates and our allies are out in force, which means that a bunch of concern trolls have crawled out from under their

bridges to shush us in the guise of offering helpful advice. Concern trolls, for those of you who have never encountered the species in the wild, are people who undermine and silence under the guise of, well, concern. They don’t want us to sit down and shut up because they’re abelist, they say. They simply don’t want us putting ourselves at risk by ‘oversharing’ our stories, or taking to the streets, or pretty much any other activism that shifts the conversation on disability and chronic illness from a hypothetical misfortune to be abstractly pitied towards the concrete challenges affecting the lives of actual human beings. In the case of invisible disabilities, which most rare diseases are, there is an additional pressure not just to shut up about disability and chronic illness in general, but to retreat further into invisibility and pretend our conditions do not exist.

On a practical level, this is utterly laughable. Many of us, myself included, can remain largely symptom-free, but that doesn’t mean we don’t need healthcare access or legal protection. It also belies how much effort goes into maintaining that symptom-free state. Just because we make it look like a cinch to schedule in doctor visits, pharmacy trips, adequate sleep, or any other additional needs we have into our lives doesn’t mean that work isn’t involved. Additionally, we cannot claim protection under the ADA unless we disclose our conditions to our employers; in some cases, we can actually be in trouble for failing to disclose our condition. Unless we commit to living the double life of a deep-cover agent, the people in our lives are going to know.

Furthermore, in the case of rare diseases, our best source of information is not doctors, but other patients. Many of us, myself included, had our metaphorical bacon saved by internet strangers who spoke up. Sharing our stories is literally our best route to build community, help others get the correct diagnosis, and find effective treatments. The medical system fails in the diagnostic process for 95% of rare disease patients. ‘Oversharing’, for us, isn’t some strange form of attention-seeking. It saves lives.

Finally, and most morally troubling, is that the concern trolls are asking for our cooperating in our own oppression. The concern troll logic is as follows:

  • People with disabilities are perceived as burdens on society, incompetent, and otherwise stigmatized. Genetic diseases are framed as life ruining.
  • If you, a productive, happy person with a rare disease, comes forward to spread hope and awareness, assholes who don’t like people with disabilities will be upset.
  • Therefore, you should pretend to be healthy and ‘normal’ and not challenge the perception that it’s possible to lead a fulfilling life with a rare disease.

If you still don’t get it, let’s try this:

  • Black people in the United States are discriminated against and profiled as more violent, less intelligent, etc.
  • High-achieving black people make racists upset and are targeted by the aforementioned racists.
  • Therefore, black people should avoid being in positions of power. For their own good.

If your name isn’t Jeff Sessions, reading that probably made you throw up in your mouth a bit. That’s the point.

Most us on Team Rare Disease got help from fellow patients whom we have never met. The argument that successful people with rare diseases should pull up the ladder and refuse to ‘pay it forward’ by re-sharing that lifesaving information is revolting. It asks us to be pointlessly selfish, to conceal valuable information and perpetrate shame and silence around chronic illness and disability for no discernible gain. It’s not as though my silence will save the Affordable Care Act or stop the murders of people with disabilities or advance medical research. The ‘shut up for your own good’ argument asks us not only to throw our compatriots under the bus for our own short-term gain (which is immoral enough) but to prioritize the desire of bigots to live in a bubble (in which ideas such as ‘people with disabilities have no quality of life’ go unchallenged) over the very concrete needs of people who could benefit from activism and awareness.

So my answer is no. I will not shut up. The only way to challenge the negative perceptions of people with chronic illness and disability is to speak up and tell our stories. We cannot let concern trolls take our voice away. I will continue to tell people that we on Team Rare Disease can love and achieve, that we do not have to put our lives on hold while passively waiting for a cure, that we want our rights and nothing less. I will continue to advocate not just for myself, but for the thirty million Americans with rare diseases, and the millions more who join us under the ‘disability’ umbrella.

Show me a historical example wherein a group of people improved their lot in life by quietly complying with their own oppression, and I’ll eat my shoe. So instead of sitting on my ass and hoping that medical system will magically get its act together or fascist governments will cease their attacks on healthcare access, I’ll see you in the (virtual) streets.
*’Disability’ is a remarkably diverse group united by common political aims. I was convinced by the inimitable Alice Wong that we have much to gain by uniting under this banner. My specific needs might be different than those of, say, a healthy dyslexic person or a wheelchair user or a cancer survivor, but we all rely on legal protection from the ADA and healthcare protection from the ACA and thus benefit from uniting under a shared label.


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