Problematizing How we "See" Down Syndrome

As World Down Syndrome Day approaches (March 21st) there are bound to be campaigns aimed at Down Syndrome awareness and inclusion. While well intentioned, it's important that these efforts are contextualized to ensure they do not perpetuate or reinforce stereotypes. 

With this in mind, the #HowDoYouSeeMe campaign strikes me as particularly problematic. In short, this video narrated by a woman with Down syndrome is shot almost entirely using a famous, white, non-disabled woman to demonstrate all the things folks with Down Syndrome do. The reveal at the end is that the reflection in the mirror is that of a woman with Down Syndrome - and the catch is that we should "see" people first. While this plays on notions of personhood and disabled status (there are many pieces on the politics person-first language that are well worth the read), the ultimate take away is that we should not see Down syndrome. Yet, historic and contemporary resistance to the physical characteristics associated with Down syndrome are important considerations that this campaign completely ignores. 

There are many reasons this is problematic, and disability rights advocates quickly responded to voice their concerns (a specific thank you to @erabrand for our conversation and shared insights here). However, my specific discomfort with this campaign is the ways in which it ignores historical context around the physical features associated with Down syndrome and subsequent attempts to correct and erase these. 

In his paper "Observations on an Ethnic Classification of Idiots" John Langdon Down (sometimes uncritically embraced as the "father" of Down syndrome) situated Down Syndrome in relation to the physical characteristics of various "ethnic standards" suggesting the presence of Down syndrome was a kind of "retrogression" linked to non-European races. Of note are how these foundational ideas still persist in language around Down syndrome and practices aimed at erasing and/or diminishing these physical features. For example, both tongue reduction and facial reconstruction have been touted as means to diminish the physical features of Down syndrome. 

Folks with Down syndrome have been (and continue to be) subject to invasive and abusive interventions aimed at minimizing Down syndrome and making them appear less disabled to the outside world. Given this, it is especially important that any awareness campaign does not erase the physical features associated with Down syndrome and instead promotes inclusion that is based on "seeing" and embracing our peers as they are. 

Dyslexia, Disability Simulation, & Media Coverage

It’s not often I notice dyslexia trending on social media, so when I saw it this morning I was intrigued. I was disappointed to learn dyslexia was trending and getting all kinds of press because of a new simulation that uses a computer code to continually scramble letters within the text. I’ll be honest; I got my hopes up and thought this might actually be a story that mattered – maybe a story about building a more inclusive curriculum or supporting invisible disabilities in the work place. Needless to say, dyslexia wasn’t trending for either one of those reasons.  It turns out it was trending because it seems folks cannot get enough of disability simulations. The news that a coder had created an experience to mimic how a friend described dyslexia, was enough to really excite a lot of people. But there are so many aspects to this code, disability simulation, media coverage, and the public response to these types of things that are problematic. Below are a few of my quick (and messy) thoughts on why this bothers me... 

First, let me start with the obvious, there is nothing new about jumbling up words so non-dyslexic folks can experience what it’s like for dyslexic folks when they read. I’ve lost count of how many times this has been done and framed as some innovate insight into the dyslexic mind. This may not be something a coder has done before, but even still, why exactly is this newsworthy now?

Second, the lived experience of disability varies. Each person will have a different experience and this experience can and will change over time. There is no one standard set of experiences that illustrate what it’s like to read with learning disabilities or dyslexia.  Also learning disability and dyslexia are more than simply jumbled words for readers. This actually matters quite a bit because covering dyslexia in this way reinforces stereotypes about dyslexia and in doing so you leave little room for the wide range of experiences and individualized accommodations.

Third, by shifting the discussion to “what the world looks like to them” you also end up framing disability related barriers as inevitable. If this is how dyslexic folks see words, what can really be done about it besides feel sorry for us? It turns out quite a bit. There is a growing and endless list of things that can be done to make things more accessible for dyslexic folks. Dyslexic folks don’t struggle in school and work because they are incapable of learning and working –they struggle because they are faced with countless (removable & preventable) barriers. If you really want to know what it’s like to face disability related barriers listen to dyslexic folks, respect their individual needs, and stop questioning their need for accommodation.

Fourth this kind of simulation ignores the complexity of the brain and a whole body of research, literature, and self-advocacy that works to highlight the value inherent in the diversity of our brains. There are real benefits reflected in this diversity. Yet these kinds of simulations completely ignore this.

There is a growing body of work that problematizes these kinds of disability simulations, for a number of reasons, including those I’ve outlined above. What is needed now is for individuals and the media to start giving space for coverage around dyslexia (and other disabilities) that is reflective of the very real systemic and attitudinal barriers that prevent dyslexic folks from accessing the same opportunities as their peers.

Strength in Uncertain Times: IL Philosophy, Service Delivery, and Canadians with Disabilities

There have been drastic changes to the way the federal government administers various programs. Yet  many are unaware of what these changes mean for disability organizations and persons with disabilities. 

To lear more, check out this recent piece in Abilities "Strength in Uncertain Times: IL Philosophy, Service Delivery, and Canadians with Disabilities." 

Embracing Disability as a Valued Part of the Human Condition

The recent ruling by British Columbia's Supreme Court to allow Gloria Taylor, a woman with a disability, to end her life has profound impacts for the disability community. While much of the public discourse around this issue is framed in terms of individual choice, the issue of suicide (assisted or otherwise) and disability extends beyond individual cases, as this debate reinforces the notion that disability is automatically linked to a reduced quality of life. 

Rhonda Wiebe, who co-chairs the Council of Canadians with Disabilities' (CCD) ending of life ethics committee wrote a brilliant and eloquent piece in the Winnipeg Free Press that captures the impact these kinds of cases have on Canadians with disabilities. I would encourage anyone wanting to learn more about the disability communities views on this issue to read this piece. 

To add to this issue, I want to share my own discomfort with this debate. Having a sibling with Down syndrome at a time when technology to screen and abort children with Down syndrome is met with overwhelming approval (over 90% of those who learn their child has Down syndrome through these tests will abort), has made the 'quality of life' debate that much more important to me. 

The assumption is almost always that having Down syndrome means a life not worth living. I can assure you that this is not the case. Our peers with Down syndrome are valued and contributing members of society. Down syndrome does not condemn individuals to a life of pain and suffering, nor does its presence disrupt families, or drain communities of resources. Yet, when the issue of prenatal screening is debated, these are the misconceptions that those unfamiliar with Down syndrome tend to embrace as the truth. These notions in turn inform public perception and policy and negatively impact the lives of those with Down syndrome. 

The foundation of current discourse around disability and quality of life issues is based on misinformed, negative, and stereotypical notions of disability. More problematically, we have excluded people with disabilities, who are the true experts in lived experience, almost entirely from this debate. Including these voice and their lived experiences would surly allow us to have a more informed debate.