Being taken care of doesn’t mean you’re being cared for. For quite some time, I grew up in a very ableist household. I’ve been a victim of toxic self-narratives and self-victimizing parents, and well meaning, but completely oblivious peers. The ABC sitcom Speechless touches on this rather well. What I like about the show is the fact that it is about a family dynamic and a yearning to be “normal”. It addresses many things like inspiration porn and the relationships between siblings in a special needs family.
I know not every family is like this. Mine sure wasn’t, but it’s nice to see a healthy dynamic and dialogue that illustrates the struggle for both parties. Personally, for me, I was something of a plot point. Something my parents could use to garner sympathy. They’d introduce me as “their daughter with Cerebral Palsy” as opposed to their daughter Adina. I rarely heard my name in reference to me, but I heard Cerebral Palsy, and that’s just the surface of things. All and all, I know that the vast majority of parents of disabled children mean well. They want them to succeed and reach their full potential, and just like any other parent, this takes feedback from the child and backing away every once in a while.
I found it interesting that so many parents of disabled kids found Speechless to be offensive. They were offended when the mother on the show, Maya, was “called out” for smothering her son JJ, who has Cerebral Palsy. One of the reasons I enjoy the show is because it’s not written for the abled bodied audience. It’s written for the disabled audience. Maya sometimes smothered her child just like every other parent, disability or not, has done a time or two before. Parents can be guilty of losing their child’s identity the moment they see their disability as something that they carry.
A child’s disability does not belong to a parent. It belongs to the child and both of you can, and should, carry it together. It is a team effort. Peers and families can all benefit from a dialogue where both sides are presented. When I tell people “If you think raising a child/having a friend/having a partner with a disability is difficult, you should try living with it.” I’m not saying it to be snappy or experiencing a bout of misplaced anger. I’m simply reminding you that if the conversation is about me, I probably should be included.
I see many disability blogs written from the perspective of parents, which are super important. I know that these blogs, support groups, and forums serve a vital purpose. But sometimes I can’t help but wonder “Does their child know that they’re being written about?”. I know that these parents are sharing their experiences with others in similar situations in an effort to help or seek guidance. It’s important to remember that both the parents’ and the childs’ experience matters. It is a shared experience, as illustrated so gracefully in the show I’ve been binge-watching as of late, and should be treated like one.