Over the weekend I graduated from my Partners in Policymaking course. It was six months of training in political advocacy – at turns exhilarating, tedious, heart-wrenching.
On our last day, we watched a TED Talk from Chimamanda Adichie about the danger of a single story. She doesn’t talk about disability specifically, but what she says certainly applies. She spoke of the power a single story can hold – and the damage that story can do. She shared a story from her own childhood in which her mother tells her that the house boy working in her home comes from a very poor family. Her mother tells her nothing other than that, so Chimamanda has a very limited, specific perception of this boy’s life and family and is shocked during a visit to his village to find that they are also capable and talented. She had only been told they were poor and never imagined they could be anything other than poor. (If you have 18 minutes, please watch the video – it’s wonderful.)
Our society has a pretty singular story about disability – that it’s something to fear, something life-altering but always in a negative way, that people with disabilities are burdens, that we put them into the service system where they’ll be “taken care of.” I can’t tell you how many times I have heard in two years that I don’t have to worry about something related to Rowenna because “doesn’t the state pay for that?”
These past six months have been instrumental for me in coming to terms with some lingering struggles I had with disability in general as well as the current service system.
You see, when Rowenna was still in the NICU, a social worker told us that we wouldn’t have to worry about Rowenna because the service system would take care of her from the time she left the hospital until she died.
That one statement so shocked me, so hurt me that I tried to bury it deep inside and get it away from the rawness of my new momma heart. It wasn’t enough just to be her mom? It wasn’t enough to raise her like I would any other child? The state will be involved in my child’s life until she dies? There was something so radically different about my child that the state had to intervene with therapies, programs, and funding?
That one statement just sat there on my momma heart and eventually started to fester. I started to believe that accepting Rowenna’s diagnosis completely also meant accepting this single story I had been told all along – that the service system knew what was best for my own child. What did I know? I was just a new mom who had some crazy ideas.
Then I started my Partners in Policymaking training. I found myself surrounded by like-minded parents who also questioned this single story about disability. I met self-advocates who showed me the single story doesn’t have to be true. We talked about a future that is so beautiful and so bright and so very possible. A future that combines paid supports, natural supports, and self-determination for people with disabilities…a future that chucks the single story right out the window and replaces it with something written by people with disabilities themselves.
I had an “aha” moment sitting there on my last day. I can refuse that single story of disability for Rowenna. I can finally put a name to what sat on my heart for so long, and I can get rid of it. The single story that told me I am somehow less of a mother and someone else will take care of my child until she dies. I can refuse it, and I can use my voice to write a new story – one that incorporates the voices of many.
People with disabilities deserve the dignity of being more than that single story. They deserve for all of us to know and understand the nuance of their lives – the good, the bad. The things we love to know and the things that sometimes scare us.
I think this beautiful blogging community plays an instrumental role in changing the single story. Every time we share a struggle, a success, a mundane detail, we show how life with disability is a multi-faceted, intricately layered story about just being human.
I am so grateful for the opportunity to learn more about disability, life with disability, and how things could be for my girl. I am grateful for the opportunity to have a drink at the bar, talk dating, talk politics with the self-advocates who affirmed over and over again my belief that one day my girl will be capable, shining, a strong voice for her generation.
My sweet girl is going to write her own story.