essay on another framing of disability
for our fight for income security

by claude wittmann, ODSP recipient, part-time earner and advocate
November 2020

Introduction Disability seems to stay associated with poverty whatever poverty reduction strategy is followed at the municipal, provincial or federal level and people with disabilities are among those receiving the less attention at the moment. One speaking example is how we have been treated during COVID-19. People with income of at least $5,000 received CERBs of $2,000/month from March to the end of August 2020 and now have access to other benefits. People with disabilities who worked for less than $5,000, or did not have access to accommodating jobs before the pandemic, or could not work received a one-time payment of $600 by the federal government and an incredibly meager emergency benefit from ODSP that amounted to $100/month before it was suddenly cancelled in July. As if this were not enough negative attention, our provincial government also shamelessly clawed back on CERB and spared about 33 mio/month (37,000 ODSP earners * $900 clawback/earner/month = 33 mio). That this is at all possible blows my mind.
Are we as advocates participating in this disaster?

I hypothesize that there is a difference between a human-rights-based discourse and the discourse of support and access that we tend to focus on and that it might be time for us to consciously decide which one of these discourses we want to use and when.

How we define disability determines how we think of the income security of people with disabilities

Some cultures do not use a concept of disability "The doctor said that she is a girl with a disability, but I don't think that the case... we don't think that of her". "In my community I'm not disabled". "As a Maori woman well I don't identify myself as disabled. I find that word a negative, disgusting deficit word. I don't know why anybody would want to dis my ability, it's that simple". "Disability, it's like when people tell you that you cannot do a thing" (while you can do many other things). "Disability doesn't exit". Disability is Western doctor's language. These are quotes from Indigenous participants in a study of perceptions of disability by Indigenous communities. In general, participants shared a common experience of disassociation from Western disability discourses and a common experience of oppression and barriers outside of their communities, but not in their communities. (source: "Indigenous Perspectives on Disability" , by Minerva Riveras Velarde, Disability Studies Quarterly, Vol 38 no 4, 2018).
Disability is a social construct Disability only exists in ableist societies that consider some differences as a lack, impairment or impediment: it is a social construct. At the moment, it is both oppressive as it is source of stigma and discrimination, and necessary for people with disabilities to survive. But, in fact, we would not need it. We would only need to trust the experiences of those who suffer and provide for what they say they need. Would that be too expensive? There is no way to predict what needs would manifest in this (utopian) society that is not ableist. Let's remember that a lot of the suffering of people with disabilities comes from the ableism they face. Maybe trust would be less expensive than disability.
A recent trend: social definitions of disability Most current definitions of disability fall on a spectrum between medical and social. In a purely medical definition, the disability is in my body/mind because something in me is deemed of a lesser standard. Medical definitions can classify individuals according to clinical diagnostics or according to functionality. A functional disability would be a long term limitation in activity resulting from a medically recognized situation.

In a purely social definition, the disability is not in me but between me and others. It is a barrier to my way of being that has come to exist simply because I am in an ableist collective and not seen and valued as much as others. Wheelchair users experience barriers at every corner. Individuals whose neurosystem is wired differently than the norm are also often cast on the side of disability, a casting that can interestingly change over time or centuries.

When disability is defined socially

When disability is defined purely socially, disabled individuals are freed from the burden of the lack. There is space to consider them as true equals. It becomes easier to see that a person who lives with a disability has as many teachings to share as anybody else.

It also becomes easier to understand that their need for support only exists because of how our society is structured and that, thus, the support, be it financial or structural or medical or else, should be freely and unconditionally provided in a mechanism of equalization that holds the collective accountable for the barriers.

Canadian trend towards a social model of disability

CRPD Canada ratified the United Nations Convention on the Rights of Persons with Disability (CRPD) in 2010 and joined its Optional Protocol in 2018. CRPD's definition is old and largely not a purely social definition but it recognizes our right to a social model of disability. A social model of disability is a mixed definition in which people are still diagnosed with a lack, but their participation in the collective is said to be limited, not by their internal make-up, but by how they have to interact with their outside reality.

Our rights under the CRPD include the rights to:

- a social model of disability: the Convention recognizes that "disability is an evolving concept and that “persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.""

- self-determination: the Convention "recognizes the importance for persons with disabilities of their individual autonomy and independence, including the freedom to make their own choices".

- active participation in decision-making in programs that concern us: " .. Persons with disabilities should have the opportunity to be actively involved in decision-making processes about policies and programmes, including those directly concerning them".

- a recognition of our economic and social rights: "Countries recognize the right to an adequate standard of living and social protection; this includes public housing, services and assistance for disability-related needs, as well as assistance with disability- related expenses in case of poverty (Article 28)".

- the highest standard of health: "Persons with disabilities have the right to the highest attainable standard of health without discrimination on the basis of disability."

- equal recognition before the law (Article 2)

- respect of our privacy (Article 22)

- respect of home and family (Article 23).
Supreme Court of Canada and Ontario Human Rights Commission The Supreme Court of Canada and the Ontario Human Rights Commission (OHRC) follow our right to a social model of disability. They interestingly even go one step further by stating that for the cases of discrimination they deal with, it is the experience of the person with disability that should be trusted (i.e. their own definition of disability), not any external definition of disability (details here).
Bill C-81 In June 2019, the federal government introduced a new definition of disability with An Act to Ensure a Barrier-Free Canada (2019)/ Bill C-81. This definition, which will eventually trickle down into federal policy, is still rooted in the medical model, but it also reflects a social model of disability:

"Disability means any impairment, including a physical, mental, intellectual, cognitive, learning, communication or sensory impairment - or a functional limitation - whether permanent, temporary or episodic in nature, or evident or not, that, in interaction with a barrier, hinders a person's full and equal participation in society (handicap)."
What does show that this definition is still rooted in the medical model? The fact that part of the disability is in the internal make-up of the disabled person.

What does reflect the social model? That part of the disability is a barrier in the outside reality of the person deemed disabled.

What else is interesting? This definition is inclusive, by stating: "any" impairment; "permanent, temporary or episodic"; "evident or not", it covers experiences that in the past might not have been recognized as victims of barriers and this is very important in the current context. the definition also makes clear that it is not only full but also equal participation that we want for people with disabilities.

Our context is one that legitimizes poverty

Poor people are shamed and helped, not given rights All levels of government in Canada establish their poverty reduction strategies. Unfortunately these strategies still put budgets first and never address the urgency on the ground, mostly because the mindset behind them is that poverty is primarily an individual problem that the collective generously "helps" to solve through "charity", "supports", "benefits", "training", i.e. measures that are supposed to put poor people "back on track". This is the most basic form of legitimization of poverty. Poverty reduction strategies are also lacking teeth in the details: in a 2019 moment of pride, the federal government announced that there were less poor people in Canada. In the end, the drop in poverty was closely tied to a drop to a lower income level of the poverty line used for the calculations. The definition of the poverty line had just been switched from being the Low-Income-Measure to being the new Official Poverty Line based on a Market Basket Measure. For people with disabilities, these strategies are rarely effective: the disability lens is usually only marginally used if used at all, and again there is no recognition of the urgency.

The legitimization also happens by ignoring our rights.

As seen in the 2019 report by the United Nations Special Rapporteur, Canada is still far from full-filling its obligations under the CRPD.

Canada acceded to the International Covenant on Economic, Social and Cultural Rights (ICESCR) in 1976, but still we have no legal mechanism to claim these rights. Among other rights, the ICESCR recognizes our right to

- self-determination, which means that we can all freely determine our political status and freely pursue our economic, social and cultural development (Article 1)

- social security and social insurance (Article 9)

- an adequate standard of living, i.e. adequate food, adequate clothing, adequate housing (Article 11)

- freedom from hunger (Article 11)

- highest attainable standard of physical and mental health (Article 12)

- education (Article 13)

ODSP in Ontario

Last-resort In Ontario, persons with disabilities have to be in last-resort situations before having access to the financial support of the quite punitive Ontario Disability Support Program. Applicants have to pass stringent income and asset tests, then be medically diagnosed and then adjudicated as "disabled" in a process experienced mostly as non-transparent and threatening.
Medical definition The current definition of disability for ODSP does not embrace a social model of disability. It is a medical definition which locates the impairment in the person with disability. Meeting the current definition means that:

- you have a substantial mental or physical impairment that is continuous or recurrent and is expected to last one year or more AND
- your impairment directly results in a substantial restriction in your ability to work, care for yourself, or take part in community life AND
- your impairment, its duration and restrictions have been verified by an approved health care professional.

This definition is the result of a long battle at the start of the program in the late 1980s, which if lost would have resulted in a narrower medical definition which in turn would have excluded most people able to work throwing them into the hands of Ontario Works which currently provides a max of $733/month compared to the $1,169/month for ODSP recipients. What allowed for this inclusion are: the word "substantial" which means that the impairment does not have to be severe or prohibiting all ability to work; "recurrent", which means that it allows for a certain level of come and go for the impairment (episodic); the "one year or more" which means that the impairment does not have to appear to be prolonged, the "take part in community life" which means that somebody who can work, care for themselves but has an (invisible) disability limiting their participation in the community can qualify too.
Back in time In 2019, while the larger discourse about disability was creating space for persons with disability to be seen as individuals who have been failed by an ableist system and have rights, the Ontario Ministry of Children, Community and Social Services (MCSS) threatened to go in the opposite direction and narrow the ODSP definition of disability to a very stringent medical definition. Advocates were thrown about 40 years back in time and started another battle which resembled that of the 1980s. In November 2020, MCSS said that they had abandoned their plan to change the definition, which relieved us, but still, we wish that the battle could have led a recognition of our rights and at least bring our allowance rates up to what they should be had inflation been factored in since 1987.
More ableism and more suicidal ideation? Now, social services and employment services are in a process of being merged/integrated towards a privatized results-funded system sold under a discourse of support and access. Of course, people with disabilities would be happy to encounter less barriers, but it is extremely difficult to trust that privatization and results-based funding will respect our rights and not add to ableist practices and suffering.

For recipients, ODSP can be seen as an abusive family whose 800 rules can change for the worse whenever a new government comes in, or a new budget is drafted, very often without much consultation, if any, and with absolutely no formal participation by recipients in the decisions that affect the core of their lives. It is a very disturbing situation which continues to unfold partly because, again, the premise is that the problem at stakes is an individual problem that the state is generously helping to solve. Internalized in recipients, this premise, when combined with poverty, sometimes deep poverty and housing instability, manifests through shame, isolation, health problems and suicidal ideation.
Time to change our framing of disability In 2019 the United Nations Special Rapporteur on the rights of persons with disabilities, Ms. Catalina Devandas-Aguilar, on her visit to Canada said: "... during my visit I have noticed that discussions about the rights of persons with disabilities are still framed in terms of social assistance, rather than from a human rights-based approach. While the Canadian Charter of Rights and Freedoms enshrines the right to non-discrimination, and federal, provincial and territorial human rights laws recognise a duty to accommodate, which allows for individual remedies, this is insufficient to ensure a systemic transformation of society."

I hypothesize that as long as we as advocates are not clear on what definition of disability we are committed to, we continue to participate in a discourse of support and access. This might be a good strategy at times, but we should be aware that this discourse keeps people with disabilities as impaired and in need for help when available, rather than frames us as equals who are failed by an ableist system and have the right to mechanisms of equalization that call their governments to accountability.

Would that separate us from other anti-poverty advocates?

I hypothesize that we can do better than that but that some focus on disability might be good for now. Disability starts to be seen as a social construct and this shift in concept is quite equivalent to recognizing poverty as a systemic problem, a shift that is still needed.