"There's nothing worse than seeing your child suffer"

I’ve heard a lot of nondisabled parents of disabled kids say things along the lines of “there is no worse feeling than seeing your kid suffer.”

This has always bothered me, and recently I figured out why.

That sentiment implies that disability and pain are harder on parents than they are on disabled kids. I don’t think that’s true. I think this wrongheaded sentiment has done a lot of damage. (I don’t think that all parents who say this mean it literally. Many people say this just kind of because it’s what it’s customary to say. But a lot of them do, and it’s a sentiment that’s encouraged.)

A child’s disability is about them. They’re the one experiencing it directly. They’re the one experiencing any associated physical pain. They’re the one experiencing struggles to do or understand things. They’re the ones facing intense discrimination, hate, and exclusion. They’re also the ones facing a scary future in which services they need once they outlive their parents may not be there.

Parents experience a much more mild version of that. What nondisabled parents of disabled experience is big, and it’s difficult. What people who actually have disabilities experience is much bigger, and much more difficult.

Parents need respect and support, and they don’t get nearly enough of either. People with disabilities get much less respect, and much less support — even though the problems we deal with are bigger; even though we need more support than nondisabled parents do. (And people who are both disabled and parents of disabled children get almost no support or respect at all.)

tl;dr “There is no greater pain than watching your child suffer” isn’t true — and it leads to ignoring the fact that disability is the hardest on people who are actually disabled. Nondisabled parents don’t get enough respect or support; they do get the lion’s share of it. People with disabilities need more and get less. This needs to change. (For everyone’s sake.)