Dear Not Disabled Yet*,
You can buy hope.
It can be a one-off payment, but if you’re desperate you’ll come back for more.
It’s funny how expensive hope can be.
When I posted on socials about my usual, pretty humdrum way of coping with chronic pain (in this case using a TENS machine during a flare-up), simply showing my reality and making no comment about how I was feeling emotionally, it attracted this comment from an Instagram wellness life coach:
“Hope your pain gets better today and I’m glad you have tools to help! I use [sic] to love my TENS unit too. It was a lovely distraction.”
So far so kind, if it ended there, but it didn’t. In response to my thanks I got:
“Hang in there! I had pain for 20 years and am finally pain free!!! No tens units. No ice, no heat, no more kenesio [sic] tape or SI belts!!! It IS possible!!!!!!”
Ah, so this is what was really behind the past tense in the original comment. Firstly, note the (very quick) shift from praising the TENS machine to the casual dismissal of useful aids that can make people’s lives better, the implication that you’re doing something wrong by needing them, relying on them. They’re not the answer!!! She has the answer!!! But note that she doesn’t give that answer, doesn’t say how she is pain free. She first has to reel me in with her positive!emphatic!exuberance!
Cue an exchange where I don’t play ball and she says, “I don’t know your story, but…” in response to my list of societal-wide changes that need to happen to improve the lives of chronically ill people. In this context, there’s absolutely no need to know my story, but she has to bring me back from political change to the self as atomised individual under capitalism. She ends on: “There is always hope.” Which I took to mean: following her motivational Instagram and paying for her life coaching. And I will keep hoping and keep paying. Because that positive outcome is always just out of reach… These self-made health gurus tell us: “You too can be like me… But not until you pay my mortgage.”
People need hope when they have nothing else. Which is why I’ll always take to the mat anyone who exploits this by weaponising and monetising hope.
We are not your prey, lady.
*
When people email me and say: “I hope you're well”, I interpret that in my own way because I’m never well and likely never will be. I take it to mean they hope I don't get any illness on top of the usual flu-like exhaustion and 24/7 pain.
Of course, it’s my own fault that I’m unwell and likely will never be well again. My own fault for not hoping enough, for not spending enough money on hope: if I don’t buy hope, I don’t want to get well.
By acknowledging I’ll likely never be well and getting on with living my life in the present, does this mean I’ve “lost hope”? No. It means I’ve stopped harming myself trying to live up to the expectations of the well of how the ill should be. I won’t perform the martyr nor will I attempt to perform “overcoming” through “sheer force of will” inspiration porn.
*
When it comes to health and wellness people think in black and white. They like simplicity. They like the idea they have control over their health. It comforts them. Oh, how they cling to the idea of control and oh how I laugh like an old crone. They’re smug in their wellness, sure of their superiority to those who are sick (if you take even a brief moment to ruminate on where this belief takes a person, you’ll find them cosied up with fascists and eugenicists).
To them I must seem like walking chaos, disrupting their controlled, ordered existence with my lived experience.
When people say, "at least I have my health", what does that mean and what does it imply?
I don't have my health. Does that mean my life is
bad
tragic
unhappy
If the lives of disabled and chronically ill people are a nightmarish struggle, that is a choice. Not our choice (we rebel against it with joy when we can). It's society's. It's yours.
When people say "don't lose hope" in response to the reality that I'll likely never be well again I roll my eyes at their tilted head condescension. I don't need hope. Do you know what I need?
I need for my illnesses to be free of stigma. I need adequate – no, more than adequate, given the years of neglect – funding for good quality biomedical research. I need a fit-for-purpose stigma-free benefits system, a non-draconian government, and excellent medical and social care.
We all need this.
And none of it requires hope; it requires action. From you. From all of us.
But you prefer your empty hope and empty platitudes. You'll stubbornly stick with sentiment and fantasies of supremacy.
And I’ll go on, living my life, refusing your narratives and building new joyful ones with my fellow crips**. Our hope is predicated on action. And it is not for sale.
Yours,
Ever Dundas
*
*Not Disabled Yet (NDY) or Not Yet Disabled (NYD): a term some disabled and chronically ill people use to refer to non-disabled people; if you have the privilege to live long enough it is very likely that you will become disabled at some point in your life.
**A punk, political, reclaimed word used by crips for crips.