Monday, March 28, 2016

Disability, Exploitation, and Work

While it's not a new issue, exploitive labour practices for disabled folks in Canada continues to get sporadic media coverage. Most recently, a piece appeared on about these practices. 

This piece, which I am quoted in, touches on my own research around sheltered workshops. It also includes insight from Dr. Ravi Malholtra - who has been instrumental in addressing permits that allow employers to pay disabled employees below the minimum wage. 

It is important to continue to address these forms of economic exploitation as these archaic practices persist (and even thrive) where disabled bodies are concerned. 

Wednesday, March 16, 2016

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. 

Monday, March 7, 2016

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.