Exploring Innovative Housing Solutions in Ottawa

In the fall of 2015 I jumped at the opportunity to be a part of a research team looking into the housing needs of adults with intellectual disabilities in Ottawa. 

I recently had the opportunity to talk a bit about this research with CBC Morning Ottawa. Here is a link to our interview. 

This research was made possible through Citizen Advocacy Ottawa  and the Housing Task Force. 

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 rabble.ca 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. 

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.

E.T. Kingsley Historical Archive

For those interested in disability history, particularly those interested in efforts by scholars, historians, and activists to uncover "hidden" histories of disability, the launch of the E.T. Kingsley Historical Archive is exciting. 

In this unique digital archive (and the forthcoming book under contract with UBC press) Dr. Ravi Malhotra and Dr. Benjamin Isitt explore the life and career of American-Canadian Eugene T. Kingsley. 

What many do not know is that Eugene T. Kingsley, who was a central leader of the Socialist Party of Canada, was also a double amputee. This now visible aspect of his life illustrates important intersections between class, disability and socialism in the Pacific Northwest. This online historical archive provides a rich and accessible glimpse into aspects of his life which until now were almost entirely absent from the historical record. 

Accessibility, Voter ID Regulations, & the Upcoming Election

One important aspect of the electoral process and accessibility that will play a significant role in the upcoming federal election is how changes within the Fair Elections Act will impact disabled voters. Traditionally voter information cards have been used by a significant number of Canadians to identify themselves at the polls, specifically voters who lack other forms of identification. In the last election, 400,000 Canadians relied on voter information cards as a form of identification. 

While possessing ID may not seem to be a barrier to some, there are a number of individuals and groups that this creates real barriers for, including people who don’t drive, people who cannot afford fees associated with acquiring some forms of ID, and those who face barriers accessing government offices. In the US, voter ID legislation has already significantly impacted disabled and older voters, and research indicates turnout among these same groups will likely continue decrease under these measures. On the issue of voter turnout, it's worth noting that in Canada we have already seen significant changes to the electoral process since 1997 that have dramatically impacted turnout, and these new measures will likely exacerbate this trend. 

While these most recent changes in the Fair elections Act were packaged as a way to cut down on voter fraud, there is little to no evidence that voter fraud was an issue in previous elections. In fact, the government has based a large part of its case on what they claim were the findings of an expert hired by Elections Canada, Harry Neufeld. Yet, in his report Neufeld recommended that Elections Canada simplify their paperwork and more importantly, utilize the same Voter Information cards the Fair Elections Act will no longer allow. Of note, Neufeld has filed an affidavit in which he reaffirms that voter fraud is in fact extremely rare in Canada and that these new rules pose a significant barrier to many potential voters, including those who reside in long-term care facilities, students, and those living on reserve. 

For disabled voters these new measures pose a significant barrier as well as many lack the necessary ID. In fact, Elections Canada’s own research related to aging and electoral participation notes anecdotal evidence that suggests ID requirements present significant barriers, especially to those residing within long-term care facilities. With young disabled adults increasingly finding themselves in long-terms care facilities, these new regulations are troubling. In a time when we should be making the voting process more accessible to disabled people, regulations within the Fair Elections Act are in fact creating more barriers. 

Disability & the Federal Election

Canadians have been thrust into the longest elections campaign in Canadian history. As with other elections, some of the key issues where disability is concerned include inclusion of disability issues in party platforms and debates, as well as how accessible the political process is for disabled voters. Sadly on both fronts we have a long way to go.

For those interested in steps Elections Canada has taken to make voting more accessible, check out their resources and policies.  While accessibility on voting day is a part of the issue, making the political process more accessible is a larger and more complex process and there are  key barriers we must confront in order to do this.

First, we know that many disabled persons still face significant barriers that likely result in their exclusion from the electoral process. For example, those living in institutional settings, group homes, and with parents may not be actively supported in this aspect of their lives.  Antidotal evidence indicates many disabled adults are prevented form taking part in the political process because of a lack of control around decision making coupled with attitudinal barriers that falsely suggest some disabled persons are incapable of making an informed political decisions. Here it is important to note that in Canada voting is still a relatively new opportunity, for example citizens with intellectual disabilities were disqualified from voting in federal election until 1988. This means many voting-aged adults with intellectual disabilities were born at a time when their right to participate politically was not guaranteed. In addition to how this might impact how notions of citizenship and participation are internalized,  this may also influence the extent to which an individual's existing support system may value, promote, and facilitate this right.  

Second, with respect to representation, historically our major political parties have done a poor job where disability issues are concerned. In fact, accessibility and inclusion often seem more like token gestures rather than a core element within political platforms and policy design. We still lack disabled candidates on the ballot, and there are significant barriers that prevent disabled persons from volunteering in the campaign process. This means disability remains excluded from the larger political process itself. 

The barriers noted above are just the tip of the iceberg, but begin to illustrate how exclusion operates with respect to the political participation. In part though these may help explain why disabled persons are 20% less likely to vote, as well as why decreasing voter participation remains high among disabled persons. 

These issues do matter and making making the political process more accessible and inclusive requires work.  There is no excuse for these barriers to remain, and with ratification of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2010, Canada has a duty to enable this political participation. The question remains, can we leverage the time granted to us under the longest election campaign in Canadian history to make sure disabled voters and their needs are fully included this time around? 

To learn more about disability and the electoral process check out the following links:  

Council of Canadians with Disabilities (CCD)Federal Elections Archives.

Electoral Participation of Electors with Disabilities: Canadian Practices in a Comparative Context. 

Facilitating an Equal Right to Vote for PErsons with Disabilities (Lord, Stein & Fiala-Butora, 2014) 

Independent Living Canada facts sheet on political rights of persons with disabilities.

More Than Voting Booths: Accessibility of Electoral Campaigns for People with Disabilities in Ontario (McColl, 2015).

Enabling the Voter Participation of Canadians with Disabilities: Reforming Canada’s Electoral System (Prince, 2014)

Persons with Disabilities and Canada's Electoral Systems: Gradually Advancing the Democratic Right to Vote (Prince. 2004)