There is a thing people say to parents of disabled children that is meant to be kind and is actually one of the more dishonest things you will ever hear. It comes in a few forms. You wouldn’t change them for the world. You love them just the way they are. Disability is a superpower. You wouldn’t want them any other way.
And the parent being spoken to smiles, or says nothing, or agrees out loud because what is the other option — explaining the truth to someone who has never changed an adult-sized child who cannot understand why, who has never restrained a kid mid-self-harm, who has never sat across from a feeding specialist at nine in the morning trying not to cry because your child has not eaten a full meal in four days.
So I’ll say it here, where the people who need to hear it are actually listening.
I would change it. Without hesitation. Without grief. Without a single moment of ambivalence.
I would want my child to be able to talk. To understand what I’m saying when I explain that the bath is not a threat, that the food is safe, that nobody is going to hurt them. I would want them to have a future that does not depend entirely on whether I am still alive and capable enough to provide it. I would want them to be able to tell me when something hurts. I would want them to not hurt themselves. I would want them to have a life — not a managed existence inside a system built on underfunding and waiting lists, but an actual life with the full range of things a life is supposed to contain.
Wanting that is not a failure to love them. It is what loving them looks like when you are being honest about it.
The disability-as-superpower narrative exists to make people who are not living this feel better about the fact that they are not helping. It reframes a systemic failure of support, resources, research, and basic social infrastructure as something poetic. It takes the grief of parents who are not allowed to publicly grieve and tells them the grief is actually gratitude they haven’t accessed yet. It is inspirational content built on the backs of people who are exhausted and have no time for inspiration.
It is also, not incidentally, deeply condescending to disabled people themselves — many of whom would also choose health if health were an option, and who are not interested in being someone else’s metaphor for resilience.
Loving your child exactly as they are is not the same thing as believing their disability is fine. I love my child exactly as they are and I would take a cure today. I would take functioning. I would take independence. I would take a version of them that could have a full life without me running interference for every moment of it. I would love them just as much in that version — more freely, maybe, because loving someone without constant fear underneath it is a different kind of love.
The statement I would not want them any other way does not make you a better parent. It makes you someone performing goodness for an audience. It is a virtue signal dressed up as devotion, and the people in this community have been required to applaud it for long enough.
You are allowed to love your child completely and want their life to be different than it is. Those are not competing things. That is just honesty — the kind that doesn’t make for a good bumper sticker, but makes for an actual human being telling the truth about what caregiving costs and what it would mean to have something different.
Not different love. Different circumstances.
That distinction matters. And it’s past time someone said it out loud.