How to respond to unhelpful comments around disability
Nick Sidwell, OTR/L
Nick Sidwell, owner of Ability Innovations and pediatric occupational therapists helps parents navigate responding to unhelpful comments from others that may stem from their child’s disability or diagnosis.
“But your kid doesn’t look Autistic.”
“Are you sure your kid has…?” (insert diagnosis here)
“When will she grow out of it?”
“If my kid had… they wouldn’t…”
These phrases bother some parents so much. I’ve heard pain and frustration expressed a lot since becoming an occupational therapist. It is hard to know how to respond to people showing that they really don’t know much about having a kid with a disability or a certain diagnosis. I may have even said something like that to a parent…
But the real question is, “How can anyone learn to be ok with it?” How do we get to the point of being ok with insensitive comments, others being wrong about our kid, or us as parents, and still stick up for our sons and daughters?
Sometimes we receive the diagnosis through a long battle with a pediatrician, a specialist, hours of testing and assessments. Then, the person least qualified to give their unsolicited opinion comes along and an enlightened parent might think, “This would be a great educational opportunity”, but most parents have the immediate knee-jerk reaction of being defensive.
Sometimes, this statement could also be taken as a compliment. Based on physical appearances and behavior shaped by hours and hours of programs and therapy, and now they seem more typical. Getting to this realization evokes more complicated emotions for parents too. Maybe it’s a huge occurrence that they “look normal” because they may not be judged by other children or strangers upon first glance, and no parent ever wants their children to be judged. But some disabilities go beyond the outward appearance. First glance doesn’t justify snap judgments.
On the other hand, when they start stimming or behaving in a non-typical manner, the judgements can be so much worse, especially for parents and caregivers because judgment often ends up on the parents, like they are responsible for not taming the behavior. Often these comments also invalidate everything about the lives of these parents that toils and struggle day after day. When no one is getting any sleep, when their daughter or son is having meltdowns, when they constantly have to cancel plans because it's already been a challenging day. Sometimes there are things happening at school, then tons of appointments and therapy sessions, and the rest of the day was spent on the floor crying because the child didn’t have the language to tell mom, dad, or other caregivers why they just can’t. Flippant comments come when parents are emotionally wrecked for the sheer reason that they are a family impacted by disability and deal with more than a typical family that may never understand.
All of this boils down to one thing, we as parents know our children best. We are their greatest advocates.
Comments may come when we least expect, good day or bad. But here are some things we can do about it:
1. Remember the phrase, “It's ok for them to be wrong about us.” and say it to yourself over and over. This is called Taking The High Road. Taking the higher road means being loving in the face of untactful remarks or strong feelings and reactions that another person may have to you or your child. One skill that helps is the ability to maintain a bigger picture of who your child really is and not needing validation or finding credence in someone who really doesn’t know you or your child. Bruce Lee once said, “You will continue to suffer if you have an emotional reaction to everything that is said to you. True power is sitting back and observing everything with logic… Breathe and allow things to pass.”
2. Remember this is just a person that does not know any better. We don’t yell at and berate our toddlers when they fall down when they are learning to walk. The same applies to the obvious understanding of some people who say things like, “Your kid doesn't look [like they have a disability].” People are at different levels in their life and they can be insensitive in their ignorance. Aristotle said, “There is only one way to avoid criticism; do nothing; say nothing, and be nothing.” Never forget, you are doing awesome things!
3. When you see something beautiful that your child does, celebrate it! Make more of the wonderful things of life than the hurtful ones. These celebrations and the reactions about the beautiful things that happen could last a lifetime- hurts should not.