Thank you to my fellow organizers and panelists. Before I get started, I’d like to identify myself within this conversation, as a white, employed person with a physical disability that is easily identified with, and the privilege that comes with those things. I also identify as a radical disability activist, knowing that I’m someone who has the privilege to be able to identify myself in that way without much repercussion. The presentation I’m giving today and the research behind it are given in recognition of that privilege, and knowing that the knowledge I share has built on the knowledge of others who may not have these privileges.
I’m also the founder and co-organizer of an annual event called the Toronto Disability Pride March, now in its 7th year. For those of you who may not be familiar with the march, it is a grassroots event lead by a small team of dedicated organizers. We highlight issues facing the disability and mad communities, and by prioritizing the voices of those of us who are the most marginalized. We recognize that the mad and disability communities are as diverse as the communities we come from, while turning privilege on its head. This is reflected in the speakers we call upon each year, but also in our organizing team. Our social media discusses subjects ranging from accessibility standards to Black Lives Matter and Idle No More to labor struggles, the lack of housing in Toronto, and the struggles faced by the many people living in poverty. It’s an amazing bubble of disability justice organizing that we’ve been fortunate to steep ourselves in for the last eight years without any government funded restrictions on the activism we do.
Like many such social justice bubbles, it becomes seductively simple to forget or overlook the reality that most disabled and mad people in Canada do not have these spaces. If these spaces do exist are often much less diverse and harder to plug into, they may seem detached or elite, or simply don’t connect with the day-to-day realities of people’s lives. Many disabled and mad people are connected in small local networks, but a great many others are on their own and left to tackle issues of oppression and discrimination in an individual way.
I’m going to be exploring two main groups of disability organizations today what I refer to as grassroots disability organizations and legacy disability organizations. Grassroots disability organizations are smaller, local organizations with minimal funding or structure, with a focus on a particular disability issue or event. The organizations have a short history, and they often make use of intersectional discussions and social media to increase public awareness to build political pressure in creating change. Legacy organizations tend to focus more on policy and programs, they have a long history usually spanning over decades, and have built strong relationships with governments, and potential funding organizations.
While grassroots disability groups have difficulty connecting with older legacy organizations, the reverse is also true. Legacy organizations seem to do their work outside of what’s happening on the grassroots level. It is the segregation between these two groups that brought about the research I present here. Some time ago I was asked to participate in a research project by legacy organization, asking why younger disabled people weren’t participating in activism. I don’t have my response, but it started with something like “perhaps we should re-examine this question”, and so I am.
To illustrate the bias in the research question of why younger disabled people aren’t participating in activism, allow me to use the example of a poverty group that I worked with back in the early 2000s. The group had a board structure, and was comprised of 50% community members who were people living on ODSP, and 50% service providers such as legal clinic workers and social workers. I sat in both categories as a social work student living on ODSP, and within a few years I was asked to Chair the group. By taking on that role I came to realize why the group had such difficulty communicating. While both sides of the table shared the goal of eliminating poverty, the two sides were not equal. There was a clear power imbalance between the two sides that the structure of the committee could not address. Different priorities in both the structure and goals of the committee were very clear, and both sides looked to me, as the Chair, to prioritize the needs of their group.
The bias is that legacy organizations have failed to acknowledge that a conflict between grassroots and legacy disability organizations exists, or that they may have some role in the conflict. While each group is passionate about disability rights, they end up competing for talking points within larger institutions, rather than working in tandem with each other, and this has led to a decreased effectiveness of the movement as a whole.
To understand this better, we need to have a look at the power structures that make up these groups. When we look at the structure of legacy disability organizations at the national and provincial levels we see a few common traits, a hierarchal board structure, members are voted in by other members of the organization. To become a member, you may have to submit a resume and letter of interest, or be in good standing with another organization. There is nothing inherently wrong with this process, but it is vulnerable to biases of power and instutionalization of historical beliefs about structures of power without much consideration for intersecting oppression.
Grassroots disability organizations do not have a very transparent structure. Their membership is not publicly posted as it is with legacy organizations, there’s no staff time, or experience staff changes with new projects. Members have their own vetting system, and much of the communication happens online or is not open to the public. For the Toronto Disability Pride March, our four-person organizing team was vetted by its members based on their past activities and skill set. The advantage grassroots groups have is in the fluidity of their structure, and their nimbleness for dealing with on the ground shifts in the movement. The recognition these groups gain comes primarily out of their collaboration with other groups.
When we look at other movements like Black Lives Matter and Idle No More, and the disruptions they’ve made; these are the types of struggles that legacy organizations were built on. Many legacy disability organizations were built on a history of struggle, and when those struggles succeeded, those projects became government funded organizations who could no longer advocate against their main funder. This has allowed strong disability projects to be co-oped outside of a disability lens.
Consider the case of the Canadians with Disabilities Act, as I discussed in a recent article I wrote called “Trudeau’s Accessible Canada includes Unpaid Work” (Graham, 2017).
Back in 2015, before the Canadian federal election, a movement of disabled people was building across the country. The call for a barrier-free Canada was built in that time by a small, dedicated group of people who reinforced their message daily through social media and on the ground action. Their methods were so effective, that what began as a grassroots call for national solidarity grew into a campaign promise by Trudeau.
What was mandated was more conversation, in the form of a seven month long cross-country consultation process with Canadian with disabilities. Consultations like these are a favored trend in the current federal government. Perhaps this is because they act as public evidence of some kind of action, regardless of how effective it is.
These events were heavily managed conversations. They seemed designed to give the appearance of consent, rather than provide opportunities for consensus and moving forward. At the public consultations, any participant that was given time to speak was restricted to a two-minute limit; a method that was inaccessible for many participants. There was the impression that the people who spoke were expected to be grateful for the opportunity to share their perspective, even when it’s only taken in limited amounts.
There were impressions that a lot of what was being said was being filtered out, and reframed to fit an agenda. Any comments referring to issues of discrimination in immigration, affordable housing, poverty, or anything involving active redistribution was notably left out. There was some potential raised for amending some existing regulations, but little else. The focus was clearly centered on employment, while carefully avoiding much of what keeps most disabled people in poverty.
This isn’t something new of course, in 2001 Michael J. Prince took a look at the state of Disability policy in Canada, and noted something he called deja-vu discourse as a government tactic in working with issues of disability policy. It included strategies like stressing gains made on the surface while overlooking structural gaps, consciously not taking action on particular measures, and promising additional action at some unspecified time in the distant future at which point the whole process would begin again. (Prince, 2004).
So why is this a problem? We are a country that still celebrates advocates that suggest our society would be better if we didn’t see disability. We see this during presentations at International Events like the Toronto Pan-Am Games when Rick Hansen proudly championed “Here in Canada we won’t see your disability” (Graham, 2016) This is also evident in many advertising campaigns where disabled children are framed in battle with their illnesses, or frames people as not disabled because they have other skills (Sick Kids Hospital Foundation, 2016), (Easter Seals, 2017). The dominant narrative is to bring disability into Canadian society rather than having it embraced as part of that society already.
For some of us this may be true, particularly those of us that are white, male, and cis gendered, perhaps these barriers are all they see of disability oppression. For the rest of us, disability is a construct and culture that impacts many aspects of our lives. It’s difficult to have an investment in structural change when working with those who are still invested in that system.
During the consultations I spoke of earlier, instead of reaching out to offer paid work to disabled people, they paid consulting firms to find disabled people to consult with. They were doing market research rather than accepting the expertise of disabled people in designing policies or programs. Disabled people were brought in as volunteers to act as champions, panels and facilitators, and provide unpaid consultation. This is a significant problem, and one that many disabled people are familiar with; recognition of expertise without status or compensation. Volunteers were put in a position of either feeling exploited or declining their knowledge, while government representatives proclaimed the need for more jobs for disabled people within the consultations.
The contrast between our political language around disability and the lived reality is most clearly seen when we can see past our privilege. The Excessive Demand clause in Immigration and Refugee Act is a strong example of this. I have many privileges in my life, but the one I’ve taken is for granted was my citizenship. If I had not been born a citizen of Canada I would not have been able to become one. My disability could be seen as an excessive demand on the health and social services system. This clause also impacts people with disabilities who are already citizens of Canada. As long as this exception is law, then our citizenships remain socially exceptional. It is impossible for Canadians with disabilities to find equitable treatment in this country when that which sets us apart bars other people from obtaining citizenship. We’re still sitting at the separate table.
Being a disabled person has power. Over the years since de-institutionalization, a lot of that power has been eroded by shame, doubt, striving for normalcy, and the idea that disabled people should either go to great lengths to hide this part of themselves or see disability as all that they are. During this time our political, societal, and economic structures have benefited from an invisible contributing force of disabled people. In the margins, we support economic structures though our spending habits and an intricate web of services that maintain the oppression of disabled people. By forgetting our power and hiding ourselves we remain invisible, or at least give society little reason to see us.
Policies and programs alone will not provide the systemic change that grassroots disability organization call for, and legacy organizations work to legislate. Change can only happen when a community recognizes its true power and collaborates with the community’s people live in to create that change.
In closing, I would like to finish this talk with some comments from disability activists I spoke with across the country, some from grassroots and some from legacy organizations. I asked them what they would like to see in creating a stronger disability movement. Some suggested a greater use of technologies like slate, and conferencing systems, others pointed to a greater diversity of members that’s more representative of the communities we come from, still others pointed to great successes in working with labor, as in the struggle against community mailboxes back in 2015.
In all of these conversations there was a common thread. Grassroots and legacy organizations do see a place for each other, and to collaborate. There is also a realization that the disability community is not yet fully aware of its own power.
Yet that power still exists, as a people, we with disabilities show the world that there is no normal way; conventional ways were created by human beings, and they can be unmade. This is our shared strength. We must keep this torch lit, and visible to all who would challenge it. We can and we will take our power back.