16/06/2026
“I’m disabled so I’m going to tell you how to advocate for your child who has a disability that isn’t even remotely close to what I experience.”
That’s what I hear when I read these comments.
Someone who is capable of reading, writing and commenting online is going to tell me how I should approach advocacy for my profoundly disabled child.
And that’s a trend I’ve noticed in the comments of many parents who share their lives raising profoundly disabled children.
Other people with disabilities trying to silence us as parents.
If you try to take away us sharing our lives, our struggles, and our children’s struggles, what you’re really asking for is for profound disability to become invisible.
You are asking for families like mine to quietly carry the weight of caregiving behind closed doors.
The truth is that profound disability exists.
Our children exist.
Their needs exist.
And parents who spend every waking hour advocating, caregiving, and fighting for them have every right to talk about that experience.
Being disabled gives you ownership of your story.
It does not give you ownership of my child’s.
And it certainly does not make you the authority on what advocacy should look like for every disabled person, especially those whose disabilities and support needs are vastly different from your own.
My child deserves to be SEEN.
She deserves to be included.
She deserves to take up space in this world without people assuming her visibility is exploitation.
I will not hide her to make other people comfortable.
I will not apologize for speaking about the realities of profound disability.
And I will not be lectured about advocacy by people who have never lived a single day of the life they’re criticizing.
The voices of disabled people matter.
The voices of parents of profoundly disabled individuals matter too.
There is room for both.
What there isn’t room for is demanding silence from the very people carrying the responsibility of advocating for those who cannot advocate for themselves.
