As a freelancer I wear many hats. I write fiction books and screenplays. I also write for websites and sometimes I do consulting on any number of topics. I recently wrote an article on Me Before You and why that movie is harmful to the disability community and to women. This led to a consulting job on disability issues and ableism. It’s my job to look over proposed advertisements, blog posts, and other copy to point out the ableism that may exist or phrases that might be offensive to people. What I found did not really surprise me.
Before I go on, I feel it’s prudent to mention that I am the mother of a child that has Asperger’s Syndrome. As a family we have dealt with numerous issues concerning ableism, but I rarely talk about these things. The reason I don’t talk about these things are the same reasons why I don’t talk about Dominick’s SMA. They are not my stories to tell. That’s it. That’s all. They are not mine.
The number of issues I am flagging as ableist in my new job come from stories of parents. How Billy’s brain injury has devastated their lives and they walk around in a cloud all day, only able to focus on how he can’t think, walk, or even have emotions (not my words…). Note that all you know about Billy at this point is that he has a brain injury. We do know how it affects mom though, don’t we?
I see this all the time in the disability community with parents. I am not saying your feelings don’t count. I get you want to raise your children up. I get that it hurts when society just doesn’t love them as much as you do or it pisses you off when insurance companies dictate how integrated your children or loved ones are able to be with the community based on the acceptance of medical equipment or therapies, but it hurts your loved ones more to be talked about like they are a pity-inducing burden on your life.
I understand that everyone has a vision of their little boy growing up to be a sports star and every girl growing up to be the future Mary Poppins or FLOTUS (first lady), depending on your feministic views, but these images are not only unfair to your children and their future abilities, they are damaging gender stereotypes, to boot.
Maybe your son will grow up to be a ballet dancer and his favorite color will be pink. Maybe your daughter will be a welder. Maybe your son will be a lawyer and in a wheelchair. Maybe your daughter will be D/deaf and on Broadway. The reality is that once you have them, the decision of what they will become is no longer up to you. Raise them, love them, but realize that they are growing up every day to be more of their own person. The person they are or the abilities they have are not yours to monopolize, talk about, or draw pity from. You do not have the right to compliment or feel sorry for yourself as a result of what they can physically or mentally do.
How would you like it if your spouse talked about some issue you had but they only spoke about it in terms of how it affected them? I have hypothyroidism and PCOS. If Dominick talked about how my mood swings and weight gain affected him and how people don’t understand all we go through, that would upset me. He is an affectionate, loving bystander but he does not understand what it is like to have these problems. I stand by and help him with physical issues every day. I move his legs. I bathe him. I see the way people look at him, at times, like he is an inconvenience. I am a loving bystander. I do not know what it is like to have a disability in this sense. I may never know and that’s alright. I can still support him. I can still love him and stand up for his rights. It’s not about me though.
I can love my son and help him to understand the world that he often finds confusing. I can also tell him that if the world finds him weird that they can fuck off. I can hug him and tell him he’s great when he struggles to find friends. I cannot speak as an authority on what it is like to have a form of Autism though. I don’t have Autism. I can be a loving bystander, but I cannot be an authority. I’m not an authority, because it’s not something I have. I can’t tell you what goes on in his brain. I can tell you I will love him no matter what and that no one will fight harder for him than I will, but that’s where it ends.
I won’t tell you his stories. I won’t tell you how he feels. They are his feelings and his stories to tell. I love him and as his mother I would never take that from him and you shouldn’t take that from your loved ones, either.