Disability Advocacy: A Community Divided (#3 in a series)

Opinion: The Inclusion Agenda: Disability Advocacy in Canada – a community divided

Third in a series submitted by Dr William Cowie, Every Canadian Counts Coalition, https://everycanadiancounts.com,

Recent years have shown great progress in addressing important issues for persons with disabilities largely as a consequence of renewed federal actions culminating in the enshrining into legislation the Accessibility Canada Act. The passage of this Act was important in two ways.  First, it reflected a new activism on disability issues by the federal government after a roll back in engagement that began some 30 years ago. Secondly, and equally important, it represented the culmination of a brand of disability activism that began with the deinstitutionalization process in the 1970’s, and was propelled by the ideology of neo-liberalism, a doctrine which abhorred government and lauded market based solutions to social problems. Under this model, ‘community’ was to replace government as the overseer of carer of last (and first) resort with government providing incentives for the community to take on this task.

Neoliberalism and the Community Movement

There is no doubt this community led movement has changed society’s approach towards, and understandings of, persons with disabilities. It is reflected for example, in a changed discourse. We no longer speak of ‘retarded’, ‘handicapped’ or even disabled persons.  It is persons with disabilities. In addition and in keeping with the market orientation of the broader neoliberal agenda which emphasized market relations and productive engagement with society, persons with disabilities were presented as people capable of contribution, and with that came the right to be employed, not on a special basis, but on the same terms as anyone else.  Indeed, if there is any agenda that has characterized the last few decades of activism among the many organizations that represent persons with disabilities, it has been the push for equitable access to employment. It was the driving force behind the Accessibility Agenda. The problem was seen to be not of the person with a disability, the individual, but of a society that was putting obstacles in the way of their participation. The turn of phrase was, ‘People do not need fixing – society does.’ 

This neo-liberal perspective with respect to persons with disabilities rested on two fundamental guiding principles. One was that of the sovereign consumer.  Persons with Disabilities were sovereign consumers like anyone else, and as such had the same right as anyone else to control any resources that came their way. And with that came the right of choice. This notion has driven the individual funding (Passport) agenda and was compatible with the individualized care model. Another important principle – already noted – was the presentation of individuals as productive members of society.  Overarching both was neoliberalism’s central thesis that an individual is valued and assessed in terms of their relationship to the market, i.e. as agents of supply and demand.  Ideally under neoliberalism this market place was unburdened of government interference (deregulated) as much as possible, and where community replaced the ‘nanny state’ government and its agents and agencies.

The Accessibility/Community building Agenda

There can be little argument as well that many of the elements of the neoliberal agenda were progressive. It placed the individual at the centre; it recognized the right of choice; and, it worked to change the image of persons with disabilities as contributing members of society. It also realigned programming for persons with disabilities in two major ways. The first was an emphasis on overcoming barriers to participation particularly with respect to employment. Indeed, employment became the core message and focus of the activism that has been at the heart of the Accessibility Agenda. Deriving from this, the role of government in this framework was seen as an agency to help overcome barriers – not to oversee care.   Care was not the issue as people ‘did not need fixing’. 

The second programming emphasis that emerged related to ways governments could strengthen community support and especially support for families. In true neoliberal fashion this was accommodated with various tax incentives (RDSP, Disability Tax credit} or where transfer payments were involved, non-mediated direct to person funds (Passport funding, CPP Disability benefit) to be used in the marketplace as consumer choice allowed.  The assumption here was that Canada was a country populated by wealthy middle class families capable of providing the resources and support for the disabled family member where tax incentives would have a real impact. 

A third programming emphasis, and one which gave birth to the community movement in the early days, was a preoccupation by many advocates with de-institutionalization of any form. It was not just the Regional Centres which housed hundreds, but group homes, and government funded service agencies that supported them (including sheltered workshops) which were viewed as violations of a person’s right to live independently.  They were seen as the antithesis of choice, and reflected discrimination rooted in a prejudice that saw persons with disabilities as less valuable as contributing members of society.

The neoliberal agenda also promised one other thing: efficiencies. These efficiencies were born of its market orientation and consumer choice capability facilitated through the provision of competition. The result was the fragmentation of the sector, with coalitions of advocacy and service being built around different disabilities (MS, Blind, Deaf, Spinal Bifida etc.) pursuing the same or different agendas, employment, housing, inclusion, training, accessibility, or combinations of these often formed by parent’s groups ultimately seeking government support. In this framework unified agenda setting was impossible as all the different groups competed for limited resources.

Through all this the Accessibility/Community Agenda has been the dominant focus of activism and programmatic initiatives since the 1980’s. It has reached its Apex with the passage of the Government of Canada’s Accessibility Act in 2019. With that Act the federal government defined its role as a model employer of persons with disabilities in the hope that its example, coupled with facilitating instruments and programs, would encourage other levels of government, civil society and the private sector to adopt the same standards and practices. 

But as anyone who it at all familiar with the landscape faced by persons with disabilities knows, we are far short of what is needed. Some, even the majority, benefit from the programming afforded by the accessibility approach, but many do not and will not, or will do so only partially. And until those other needs are met, the community that supports persons with disabilities will remain a community divided, and it will remain so unless we move on from the strict neoliberal market oriented straightjacket that has so focused (needlessly) disability related policy and programming in the last decades.

A Divided Constituency

The movement to community-based caregiving driven by the neoliberal ethic was revolutionary. But like all revolutions, there was a power structure to overcome. And there have been winners and losers in large part born of neoliberalism’s inability to represent the interest of all persons with disabilities. After 50 years the neoliberal revolution has achieved only limited victory.

But first, who was the enemy? As already noted, it was governments. At the launch of the neo-liberal revolution it was symbolized by Nurse Ratchet from in ‘One Flew Over the Cuckoo’s Nest’, the hard-hearted public health bureaucrat (hardly presented as a self-sacrificing nurse) in her role as a manager in a state-run institution. But as also noted above, there was the assault on all the features of government programming of the day: sheltered workshops, Agencies charged with care and supports that received government funding, unions (driving up the cost of services when the money could be better directed to individuals), as well as any (even partial) defenders of the old ‘ward of the state’ system.

Who were the winners and losers? In what might be viewed as a harsh judgement, the winners were those typical of the neoliberal economic reform agenda – the lucky and the strong. When one examines the chief beneficiaries of the various Accessibility Acts, the singular achievement of the neoliberal era, it was those in the disability community that were well resourced and relatively privileged and/or capable. The societies being required to adapt, were for persons with a disability who had the personal support they needed to function to the fullest of their capability and who were capable of adapting to the discipline of employment at some level. And here lies the source of the great divide. The losers were those who did not have the service supports they needed, and who were for any number of reasons incapable of working. 

How did this group – the under supported and the less capable, become the losers? It was found in the slogan, ‘people do not need fixing, society does’. This phrase denies non-employment related personal needs. It assumes it exists. Indeed, such expression was discouraged as it was counter to the message of persons with disabilities being productive members of society. Neediness confused that message and perpetuated the image of dependency when independence was being preached. The result is that an entire constituency of persons with disabilities were denied a voice – the voice for needed supports that existed, especially but not exclusively, in the still state supported disability service agencies.  

One group however has been able to bridge this divide and has made the call for ‘needs’ central to the discussion again. That is the Autism community. Autistic children are presented as often being capable, and even brilliant in some aspect of their lives (hence productive contributors) but cannot realize that potential without supports. But the need is great and governments have been resisting the calls.  

In their activism the autism community has done the wider community of persons with disabilities a great service.  They have pointed out a need for a new discourse not just for accessibility, but for supports to help them with the challenges they face.

A New Discourse in the Post Everything World

Post Accessibility Act, post Autism activism and now post COVID-19, it is time for a new discourse on disability issues.  But before that new discourse can begin some long held assumptions and predispositions need to be reassessed. They relate to: the ability of ‘the community’ to replace government; the role of agencies; and, the embedding of persons with disabilities in market relationships.

With respect to the community replacing government as the care giver, this is a pipe dream. We noted that the assumption in the neoliberal model, was that there was a middle class in Canada capable of looking after and supporting persons with disabilities if the right enabling conditions were made available. While it is true in many cases, it is certainly not so for all, and furthermore it is likely to get less so looking ahead.  Specifically, there are persons with disabilities who do not have families, or have families that don’t care and do not want the responsibility of managing their care. Secondly, many middle-class families are under extreme financial pressure (highest debt loads in the OECD) and this is likely to be much more the case post-COVID. Thirdly, families are smaller and becoming more scattered with less ability to share the burden. Fourth, persons with disabilities are outliving their caregivers more frequently. Parents and caregivers are frantic, and state support is the only recourse many can foresee. 

Agencies will not be going away. For some of the reasons noted above the demand for their services will likely grow. It is also worth recognizing the agencies themselves were the children of community activism. They were often founded by parents and caregivers. They are not denials of community, they are reflections of them. In addition, they provide jobs, professional help and are often very creative support. They need to be strengthened. They have also embraced the positive features of neoliberalism: person centred programming and support; embracing productive and meaningful engagement with society; and, the right of choice. 

Also, and singularly important, persons with disabilities are not defined by their relation to the market. They are not ‘customers/consumers’ or ‘producers’ but citizens and humans. They may or may not be productive in the economic sense of the term. But they have a right to enjoy healthy, safe and secure lives as participating members of society, ideally enabled through equitable access to the broadest range of societal supports and opportunities. That is the true meaning of inclusion.

Opportunities and Inclusion. Within these words lies the new discourse and the new programming. What is needed to maximize the opportunities for persons with disabilities however they might define them? It may be a need for a job, or a prothesis, or therapy, or a laptop with internet access, or a personal care worker to help navigate the world. It is time to broaden the discourse and engage in related actions to not only provide accessibility but to address need.

The Opportunities/Inclusion Agenda

If a measure of society is in how it cares for its most vulnerable, then Canada still has a long way to go to meet the needs and build opportunities for persons with disabilities.  But if Canada is to meet its obligations under the CRPD it needs to up its game and reconceptualize the agenda. We will also need to find the means to do so, and as anyone familiar with the Every Canadian Counts Coalition agenda, the most efficient funding mechanism to do so is through a national disability insurance program. 

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