Just being alive as a disabled person in this world is HARD, especially when you are surrounded by stigma and that has soaked into your bones, shaping both your worldview and your self view.
That might be compounded because you may be multiply disabled, or have intersections across different aspects of who you are that are more, less, or equally stigmatised, dependent on what those intersections are.
Then there is the fact that Disabled people are forced into imperfect decisions and situations constantly, that we have no choice but to make or be in. Often those contexts are dramatically life changing.
This brings massive and unavoidable stress and uncertainty.
Those decisions and situations combined with that stigma, often mean your levels of safety are dramatically reduced, which can be claustrophobic, confining and deeply contributes to anxiety.
For those of us with disabled children, there is an extra layer of this: impossible systems navigation through systems designed to be convoluted, complicated, inaccessible and to create as many barriers as possible.
Many of us now home-educate, which brings a harsh mirror of expectation and demand when normative pressures, and future fears creep in, with the added loveliness of children with trauma from years of unmet need thrown into the mix, to add to our own.
Those of us that unavoidably have kids in school, are holding space for daily dysregulation, or the intense holding together of things that you know will explode at some point, along with the constant cycle of hopes being dashed, and promises being broken.
We are often dealing with all this with zero support from family, who actually often just provide rich levels of more demand, judgement, and expectations, and extra work. Often with family members who put themselves at the centre of the universe, and assume all others orbit their needs.
We’re living this against a backdrop of pandemics and war, suffering and heartache; and a constant wave of negative noise and assault from our governments, the media, a lot of professionals, even our neighbours; that just increasingly diminishes any form of safety you might have clawed back for yourself.
Within this context you are NEVER, EVER, EVER, EVER NOT going to drop A LOT of balls.
In fact, if any balls are caught at all, it is a miracle.
Within all this context the idea that anyone wouldn’t drop balls is a ridiculous and self-harming level of pressure to place on themselves.
It’s literally unachievable.
It is going to happen constantly. It would be happening anyway, even if none of the above context existed because nobody is perfect.
Keeping ourselves, each other, and/or our young people alive, relatively safe, in relative health, and relatively happy in those contexts is an indicator of massive success, not evidence of failure at all.
When you hear that voice rising up berating yourself for having ‘messed up’, come back and read this, and try to remind yourself that you aren’t a Marvel character, this isn’t a fairy tale, life is hard and its harder with context.
That voice berating you isn’t worth a damn. Apologise to yourself for being a unfair to yourself, and remind yourself that perfectionism be f*cked because being perfect is a sign of failure.
Keep in touch with Kieran Rose, The Autistic Advocate
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Got more questions about Autism?
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