The state of disability rights activism and policy-making in Canada

It is beyond time for us to have a discussion about the history and status of disability rights activism and related policy-making in Canada.

I’m going to preface this by noting that I was born in Canada and grew up in Canada. I lived in Germany for 3 months after undergrad, then in Wales for a year. But the vast majority of my life has been spent as a disabled Canadian in Canada. And yet somehow, I know more about the disability activism occurring in the UK, the US, and even Australia, than here in Canada. Or perhaps I should say I know *about more* disability rights activism in those countries. Because I’ve done reading and research on Canadian disability activism. I’ve looked for organisations with which to get involved. There are none. There are, of course, some amazing individual activists here in Canada, and I’m lucky to consider some of them colleagues and friends. But we’re all out here doing our work as individuals .while the disability policy discourse in this country is dominated by fragmentary provincial and impairment-specific groups, and a handful of advocacy organisations with a top-down management structure and minimal grassroots engagement.

Barnartt [2008] notes that the history of disability rights activism in Canada has been highly impairment-specific, and that protests have been focused on services, and targeted to provincial legislatures, rather than the federal government. This is in contradistinction to the history of disability rights activism in, for example, the US where wider-interest groups like ADAPT have been instrumental in working toward societal inclusion of disabled people from a broad, rights-based perspective, at a federal government level. Barnartt attributes this difference to both a difference in attitude toward disability in Canada versus the US and the particular way in which social services for disabled people are structured in Canada:

“In Canada, both legal definitions and services emanate primarily at the provincial level — except that provinces have recently tried to push these down to the municipal level (Kitchin and Wilton, 2003).”

This latter point is crucial and, I think, informs the former. We activists and critical disability scholars know the disabled community has a tendency to be fragmentary and politically inactive. This is unsurprising given that disabled people are often socially and physically isolated, and are often enculturated by ableist beliefs and medical model approaches to disability.

So it is also unsurprising that when disability rights concerns are further fragmented as a result of their practical implementation at more localised levels of government this will result in disability activism, or rather advocacy, that:

1. is dominated by impairment-specific interest groups, as co-local persons sharing impairments are more likely to find each other through, for example, regional support groups, and subsequently, having met within a medical-adjacent context, are more likely to organise under the medical model of disability;

2. is dominated by interest groups with a top-down organisational structure, and minimal grassroots involvement or critical engagement;

3. is focused on services — more specifically, on operational aspects of services rather than the broad systemic issues that underpin issues of inequity and access for marginalised service users because small-scale interventions are easier to conceptualise, easier to implement, more tangible and thus more palatable to politicians and to the corporate patrons who tend to sponsor impairment-specific interest groups (and who are, not coincidentally, a major reason why top-down charities tend to dominate advocacy work in fragmentary contexts).

The consequences of this kind of advocacy are systems in which disabled people are experiencing this. And this. And this. And this. And this (content note for abuse of autistic child). And this. And this (content note for eugenics). And this. All with virtually no public outrcy, organisation or mobilisation.

And honestly, these are just the disability rights infringements the mainstream media is interested in covering. I have disabled friends whose benefit payments are routinely stopped for no reason whatsoever. I know disabled people who have had to engage in months-long battles with their municipality in order to gain permission to make their own homes, which they own, accessible. (Apparently ramps are unsightly in historic neighbourhoods.) I hear gut-churning stories of the abuse and neglect of disabled children in Ontario public schools from my mother, a supply teacher. Although I am receiving unemployment benefits, I am paying about $250 per month for those of my medications that simply aren’t covered by our province’s low-income drug benefit. Back when I was working, I was paying $600 per month for my narcolepsy medication. I am also trying to crowdfund my own healthcare because of procedure rationing and I am far from the only Canadian with an active medical campaign on GoFundMe. I’ve checked.

Having lived in the UK, and been heavily involved with the #CripTheVoteUK campaign I know very well what the state of disability rights is in the UK currently. And it looks something like this:

And I can honestly say that, with the exception* of hate crime resulting from explicitly eugenicist rhetoric by the government, my lived experience of disability in rural Ontario, and the experiences of my disabled friends across the country are not very different from what disabled people are experiencing in the UK. The primary difference is that whereas the UK government quite explicitly believes disabled people should not exist, Canadian policymakers prefer to just ignore our existence. In the end, it amounts to much the same thing.

* My exception of hate crime does NOT include disabled POC, and especially disabled FNMI people in Canada. People from these communities are routinely subjected to harrassment, assault and murder, and remain oppressed by our government’s denial of their rights, which is ultimately both the legacy and perpetuation of genocide.

** I will also note that most of the news stories I’ve included in this thread are from Ontario. This is because I am from Ontario, and I know next to nothing about current disability rights issues in the other provinces. This is exactly the problem.

So. We have a system (or rather, an assemblage of systems) in which disability rights are, practically speaking, quite similar to those under a system which was just described as a ‘human catastrophe’ by the UN Convention on the Rights of Persons with Disabilities.

And yet, Canada’s major national, policy-focused disability advocacy organisation draws conclusions like this:

“In summary, there is no clear indication from the data that we have assembled of a widely-held need or desire for omnibus federal disability legislation. In particular, the human rights, anti-discrimination agenda seems to be well served by the current suite of federal and provincial statutes. Rather, it appears that what may be required is a harmonized approach to economic considerations for Canadians with disabilities, including training, employment, income replacement and taxation.” [McColl et al. 2010]

Notably, none of the authors of the Canadian Disability Policy Alliance (CPDA)’s reports publicly identify as disabled, nor do any of them come from critical disability studies backgrounds. The methodology of the report I’ve quoted involved no consideration of how the policies surveyed actually impact disabled people. Nor does the CDPA include employment of, or consultation with actual disabled people in its mandate.

I’m also quickly going to note that Canada has begun drafting its first accessibility law. This does not nearly approach the range of rights violations that disabled Canadians deal with on a regular basis, but it’s a start, at least.

But the real reason I wanted to bring this up is that the drafting of this legislation was spearheaded by our former Minister of Sport and Persons With Disabilities.

Minister of Sport. And Persons With Disabilities.

Say it again.

Minister of Sport. And Persons With Disabilities.

The position was called Minister of State (Sport) until autumn 2015 when for some reason they decided that sport went really well with disability. I can’t find anything to verify this, but I assume it had something to do with the fact that Toronto hosted the Parapan-Am Games in summer 2015, and the federal government thought a hat tip to the fact that disabled people actually, y’know, exist, would go down well.

And it did, for the most part. And so I’m going to explain why exactly it’s harmful.

1. It tells everyone in this country that we are an afterthought.

“Oh fuck, we forgot about the cripples. Shit. Just…uh…just stick them with sports or something. People like crippled athletes, right?!?”

2. It situates disability in relation to sport, thus calling out to the tradition of para-athletics and setting up the “super crip” narrative as the default image of disability in the context of federal policy-making in Canada.

3. It ensures the only explicit disability representation in Parliament will represent a very narrow range of disabled experience because in addition to being disabled, the Minister for Sport and Persons With Disabilities must of course also be engaged with sport, preferably at a high level of achievement.

4. It leads people to believe that disability representation and rights in Canada have improved substantially without this actually being the case at all.

So that’s it. That’s my explainer on disability rights and activism in Canada. For now at least.

Now I put my question to you. What the fuck do we do about this?

Set up a grassroots policy advisory group? Organise to push for a federal bill on comprehensive disability rights? Actually draft the legislation and try to get it sponsored by an MP? Say fuck it all and organise to try and get the UN CRPD to address the need for federal disability rights legislation?

I’m open to suggestions. I want to do something but it’s such a monumental task and literally everything about this country is structured so as to make it more difficult to organise effectively for disability rights. So I’m at a loss for where to begin.

[NB: I’m looking for suggestions from disabled people. If you’re abled, please don’t offer advice unless you happen to have expertise specifically in drafting legislation or accessing support from politicians.]

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Alex Haagaard

Alex Haagaard

Disability-led design & health justice. Director of Communications for The Disabled List. They / theirs. Tip jar: