Barring visitors ignores the specific needs of those with intellectual and psychiatric disabilities By Natalie Spagnuolo, Michael Orsini
CBC News Opinion, Mar. 29, 2020
Disabled people know a lot about social isolation.
Many including those with intellectual and psychiatric disabilities are relying on the success of COVID-19 containment strategies, and lives are indeed at risk if they are not taken seriously. However, public health measures that restrict visiting rights to those in institutional settings are putting many at risk in other ways.
While public health principles have a rightful place in our decisions, so too do principles that recognize the humanity and dignity of people with disabilities.
As the COVID-19 crisis unfolds, recent decisions to implement visitation bans in group homes for people with intellectual disabilities, in psychiatric hospitals and wards, and in prisons, recall a familiar and painful history for many disabled people. In these days of physical distancing, it is important to emphasize that this is one of the oldest public health measures aimed at “containing” the imagined threat of disability.
Many disabled people are already separated from non-disabled people. It is a legacy of eugenic segregation, which has been resisted by survivors of former government-run institutions for people with intellectual disabilities, such as Huronia and the Rideau Regional Centre in Ontario.
While there are legitimate reasons to think about and act collectively today to contain the spread of COVID-19, there are many “publics” who are ignored in our zeal to soothe the fears and concerns of otherwise healthy, and presumably non-disabled, people. When physical distancing is widely mobilized, other risks emerge for individuals already occupying a socially distant status.
Denying the vital supports provided by trusted people, including family and friends who may assist with decision-making and communication, constitutes not only a disruption or inconvenience, it creates an impossible situation for many. Without these “reasonable accommodations,” some individuals with intellectual disabilities, for example, are left with little scope for advocacy in difficult situations, including if conflicts arise with staff members in their place of residence.
Some of these individuals do not have access to cellphones or the internet to stay connected with other people. Others, as a result of communication-related disabilities, may not be able to use phones, TTY, email or Skype.
And if the dark history of isolating disabled people has taught us anything, it’s that closed institutional settings breed violence. Survivor narratives are a painful reminder of environments marked by physical, sexual and verbal abuse, and sometimes death.
These issues are already well known to many disability communities and organizations. Last week the UN Special Rapporteur on the rights of persons with disabilities, Catalina Davindas, spoke about disabled people confined in institutions and prisons, drawing attention to how restricting contact with trusted people can lead to “abuse or neglect.”
The Council of Canadians with Disabilities echoed this concern in a recent media statement calling for the inclusion of a “disability lens” in all COVID-19 planning.
We fully support recommendations made by the ARCH Disability Law Centre in Toronto, which on March 24 urged recognition of “caregivers and disability support staff as essential service providers.” ARCH also asked the government to work with provinces and territories to, “Ensure that hospitals make an exception to any blanket prohibition of visitors when a person with a disability requires assistance with vital services like communication, caregiving, or supported decision making.”
Such exceptions are equally important in group home settings.
In a news conference conducted by telephone, Vera Etches, In light of the 2019 passing of the Accessible Canada Act, the failure to consider the 22 per cent of Canadians with disabilities in the government response to COVID-19 is immensely disappointing. Emergency planning must equally recognize those disabled people without status, including disabled migrants who face the multiple risks outlined by the Migrant Rights Network, not least of which is the threat of detention and deportation if they seek medical care, and increased vulnerability to contracting COVID-19 if they are detained.
Government-mandated physical distancing for those already socially distant and made vulnerable by support systems, immigration and carceral policies, is harmful and surely not in the best interests of public health, unless disabled “publics” do not figure in our estimation of who counts.
We must take stock of differences in terms of impairment, and appreciate how gender, sexuality, race, class, language, migration status, and other factors shape disabled peoples’ experiences with physical distancing.
Pundits will no doubt opine that these are extraordinary times, and as the argument goes, they justify extraordinary measures to protect the public. But for people with disabilities, their needs continue to be exceptional in an age in which we aren’t making exceptions. This is the inevitable circularity of pandemic logic, which is rooted in justifying actions that are outside of the typical limits of legitimate state activity. But in pandemic times, we still need to take the time to think about our ethical commitments to disabled people.
These include respecting a person’s right to access trusted people who provide empowering supports. We can start by exempting these relationships from physical distancing measures.
Scholar Michael J. Prince reminds us that disabled people are “absent citizens,” their power assumed to be non-existent. Politicians need not worry about their vote; most people can go about their lives with limited concern for the livelihood of those who vacillate between being regarded as objects of neglect and being looked upon with charity or pity. In either of these formulations, there is limited space for imagining intellectually disabled people as rights-bearing individuals who are flourishing, but it’s something society must not forget.
Crises can bring out the best in people, and we have witnessed numerous examples during this pandemic, including the caremongering movement that has emerged in Canada to support disabled people, among others.
But it is critical in our crisis planning to consider the lives of disabled folks, whose connections to society matter now more than ever.
About the Author
Natalie Spagnuolo, PhD, teaches in Disability Studies at Carleton University. She volunteers with the Council of Canadians with Disabilities and is co-director Memory, Witness and Hope, a participatory multi-modal project that supports storytelling among survivors of regional centres for people with intellectual disabilities.
This column is an opinion by Natalie Spagnuolo, PhD, and Michael Orsini. Spagnuolo teaches in Disability Studies at Carleton University and is co-director of Memory, Witness and Hope. Orsini is a professor at the Institute of Feminist and Gender Studies and the School of Political Studies at the University of Ottawa, where he specializes in health policy and politics. For more information about CBC’s Opinion section, please see the FAQ.