Nothing About Us Without Us
By Annika Seaver
The podcast with George Estreich was a discussion that really resonated with me; I have spent several years passionately working with kids who have wide-ranging disabilities, and the points that George made are so important. For several summers before COVID, I worked at a summer camp put on for free by Seattle Children's Hospital for its patients with medical disabilities. It has been so eye opening to have the opportunity to hang out with the same kids year after year, where for a week I live in a world that revolves around making everyday activities accessible to everyone, no matter their disability or diagnosis. One of my favorite parts of the camp is learning how to communicate with and understand from the perspective of someone who sees the world very differently from me, so they can feel heard and understood. It breaks my heart that so many people without disabilities neglect the opinions or thoughts of those with disabilities; they are so important to this world, and have a lot to offer.
The concept of "nothing about us without us" that George mentioned is something that really hit home for me. I think it is really presumptuous to assume that engineers or those developing the technologies know what is best for the individual without taking their feedback or perspective into consideration. As we heard about in the last podcast, male engineers fail to design pilot seats that are comfortable for females. Designing technologies that assist those with disabilities is not such a menial task, and cannot be successful without fully ensuring that it is truly working and helping these individuals. I liked George's discussion about his daughter Laura's awareness, and how he asks for her perspective and permission and treats her like he would treat anyone else. As he mentioned, it is incredibly important to let individuals with disabilities determine their own fates, rather than having someone without a disability make decisions for them, or speak for them, all the time; taking away their voice really undermines the fact that they are also human beings who deserve to be treated with respect.
This discussion reminded me of the new movie, Music, that singer/songwriter Sia produced to tell the story of someone with autism. Several critics have bashed the movie because it did not kindly portray individuals with autism, rather it underestimated and infantilized them. Several tweets were exchanged, in which the National Autism Society and other actors/actresses called Sia out for not casting an individual with autism, as there are many successful stars who have autism. Sia responded in a tweet regarding a specific actress that "casting someone at her level of functioning was cruel, not kind, so I made the executive decision that we would do our best to lovingly represent the community." For Sia to so quickly decide that she knows what is best for the community, without asking someone more knowledgeable or even someone with autism, is why voices are repeatedly taken away from individuals with disabilities because those who are not disabled assume they know what is best for everyone. This is exactly the kind of decision that George spoke so blatantly spoke against: "nothing about us without us."