My essay on resilience
The last couple of weeks have been heavy in the disability community.
Multiple stories from the UK have shown just how much disabled people are discredited, erased, and dehumanized.
(I will hasten to say that although all the stories this week come from the UK, these conversations are happening all over the world.)
What are the stories?
A Times columnist and past MP, Matthew Parris, used his platform to voice his support for assisted dying. Not only should it be legal, he claimed, it should also be encouraged for sick people to avoid becoming “burdens” to their loved ones.
Three guys on a very popular podcast had a clip where they talked about whether or not they would continue to date a girl that was “mangled” after a car accident. And whether they (as the guy dating said girl) would be considered “grim” for doing so.
Disabled kids were literally erased from their school photo. The company that took the photos offered parents two versions of the image: one with the visibly disabled students, and one without.
These are all real conversations that are being had today. In 2024.
And as my heart sank a little lower with each of these stories, I couldn't help think about resilience.
The role of resilience in disability
For many disabled people, resilience is a constant companion.
We learn very early that building resilience is a form of survival. It's the only way that you can navigate an ableist world.
A lot of non-disabled people will comment on that resilient. “Oh wow, you're so resilient / strong to manage this or that." And what's funny to me is that they're actually acknowledging ableism and the ableist structures that exist, without actually doing anything about them.
Instead of pointing out the problem, they celebrate the resilience.
As disabled people, we become resilient to all sorts of things. It's not just learning to live with our injury or diagnosis, it's actually going out there and living.
We build resilience by coming up against:
Access challenges and barriers
”Harmless” comments that are actually microaggressions
Blatant ableism from people in power or with a platform
Being the butt-end of jokes
Medical systems that don’t support us
Being called lazy for not being as “productive” as non-disabled individuals
Being denied access to employment or education
The need to fight for basic human rights
Not being seen as human
Being left behind in policy and other decisions
Not being considered in event planning
Life in a world that was not designed for us
Needing to bend over backwards to make other people more comfortable about our disability
Being put in scenarios that make us vulnerable
Uncomfortable and sometimes scary situations
Being treated as either invisible or like a hindrance (neither is good)
Those conversations and stories that I brought up at the beginning of the email — they build resilience. We have to constantly learn to hear them, shake them off without internalizing them, and keep living our lives to the fullest.
But there's a question that's been bugging me. If we're constantly building resilience and facing situations that require resilience, then how can we be expected to live in the moment? How do we form memories if we're continually operating in a state of survival? How do we exist with ease if we're always anticipating things that can go wrong?
Being this resilient is exhausting.
As much as I live a life that's full of joy — and spend as much time as I can celebrating disabled joy — the truth is that it's constantly balanced by this need for resilience. (There's another both/and for you.)
I can only really be joyful if I learn resilience. And how sad is it that that's the condition for me existing fully in the world?
