What Should I Say? Part 3
This is a part of a series called That's a good question designed to provide answers to questions I commonly receive from interested individuals. I do not claim to have all the answers, nor do I attempt to provide concrete answers to every question. However, I do hope to provide opportunities to rethink existing questions.
I guess this post should really be titled, "what shouldn't I say." However, it fits with an overall theme. A month or two ago, I stumbled upon an article outlining the controversy surrounding the musical artist, Sia, and her new movie project. I didn't have time to reflect on the controversy at the time, but after some thought, I felt the need to process through it.
The crux of the controversy, as it played out on Twitter, was that Sia is making a movie about a non-verbal young woman on the Autism Spectrum, yet using a neurotypical actress to portray the role. I don't need to rehash the whole back and forth as you can Google the details at your leisure (or check out this article https://www.cbr.com/sia-music-autism-movie-controversy/). However, I do think there are a few lessons to draw here for those who work alongside of individuals who are labeled with disabilities or perceived as such.
- Don't be afraid to say Disability or Disabled. I have written about the patronization that accompanies the use of the term "Special." As the above mentioned article points out, according to the Disability Language Style Guide, "The word “special” in relationship to those with disabilities is now widely considered offensive because it euphemistically stigmatizes that which is different." Sia's use of the phrase "special abilities" belies her belief in the "otherness" of those she is claiming to champion.
- Nothing About Us Without Us. This was, remains, the rallying cry of the Disability Rights Movement from the late 1960s to the present day. Doing "for" or talking "about" people with disabilities is not the same as creating space for individuals to tell their own stories and to shape their own narratives. This is not easily done. Yet it is imperative that those who are temporarily abled-bodied (to use a phrase that is not as common as it once was) or neurotypical to be intentional about including a diversity of ability in decisions that impact them as well as creating opportunities for individual voices and narratives to be heard. This is something I feel both the Church and secular service organizations get wrong more than they get right. However, I do see some hope as more organizations are including in their bylaws something about representation. I wish more Church Ministry and Para-Church Ministry did as well.
- Choose Your Friends Carefully. The last beef that individuals had with Sia was her partnership with Autism Speaks. Why? Well, Autism Speaks, until recently, has been solely focused on a cure (not to mention their willingness in the past to wade too deeply into pseudoscientific causes). This is a problem as many 1) do not think Autism needs to be cured. Rather, society needs to be cured of its lack of acceptance and 2) feel that the language of cure relies too heavily on the Medical Model of Disability and leads to a logical conclusion of euthanasia and therapeutic abortions. By allying herself with an organization that she had not fully vetted, Sia lost any remaining credibility on the issue. This should serve as a warning to individuals and organizations to make sure that we understand who our partners and allies are.
I don't intend to beat up on Sia. In fact, I am sure her actions started in a good place. Unfortunately, good intentions are not enough. Good actions are better than good intentions. This seems to be understood almost everywhere expect for those who work alongside the disability community, particularly in certain "bless your heart" enclaves. If Sia had spent a little time speaking with disabled individuals and done a little homework, maybe she could have avoided much of the controversy. Hopefully, that is the lesson that others might learn from this episode.