This week’s prompt is to get real about challenges related to disability. The host of this blog hop ran the list of topics by me a few weeks before they went live. This one jumped right out at me because I wondered what I would write this week. Things have been a little too real and a little too raw in our house lately and I feel a very real need to be protective of Rowenna and her story during this time. I need to reflect before I can accurately represent some of the changes in her life in a way that honors her.
So I thought I would attempt to write about something in a more general sense. I’ve written a few drafts of this post, but nothing has been quite right. I wrote a bit on the beast we call the Service System, a few paragraphs on purposely choosing segregation in a community that uses “inclusion!” as its battle cry.
But I think what I want to say is actually pretty simple: the hardest thing about raising a child with a disability is watching people other her.
It’s a service system that makes you prove, over and over again, in writing and interviews and in-person observations, just how very different your child is from her typical peers. And bonus points (in the form of extra dollars!) if your kid is extra different.
It’s a school system that makes you ask for what is simply given to other students, and sometimes that ask ends up as a fight with lawyers and a judge.
It’s a doctor who completely dismisses your child’s legitimate health concerns because “isn’t that how those Downs kids act?”
It’s the specialists who constantly recommend the “special needs” version of everything when the typical version works just fine. Being told your child shouldn’t try t-ball because she can just do Special Olympics in a few years or that swim lessons aren’t a possibility because no one in your area does aqua therapy, completely ignoring the possibility of regular ol’ lessons at the local YMCA.
It’s the occupational therapist who happily shared with you the good news that there is a sheltered workshop in your county and how wonderful it is that Rowenna will basically have a guaranteed spot when she’s an adult.
It’s the elected officials and board members who give you the side-eye and wonder what you’re on about when you explain a self-directed life.
It’s a family member sending you the adoption information for children with Down syndrome and asking you to pass that along to your friends, while asking her own friends to pray for and consider adopting the “typical” children at the same orphanage.
It’s hearing, over and over again, that your child is an angel, God’s gift, and a child they could “never” raise. God bless you, and all of that. The people who talk about individuals with disabilities like they are some kind of mystical beings, or worse, the ones that speak about them in a way that strips them of dignity and agency.
The incredible othering of Rowenna’s life can be overwhelming. It is heartbreaking to watch, and a near-constant reminder of how much work still needs to be done. It makes me so incredibly grateful for the people in our life who so warmly embrace her, love her, and encourage her.