Covid19, Our Brothers, and the New Reminders That Only Certain Lives Matter

This post, by Helen Ries (@helenries) and Jihan Abbas PhD (@JihanAbbas) speaks to the Canadian experience of disability, ableism and family relationships in the face of COVID-19. It highlights what COVID-19 has brought to light about the way that people with disability are treated as a result of the citizens and circumstances that society and political systems value and those which it actively does not value. While Canadian, many of the themes resonate in Australia, and in the lives, service and political experiences, and family relationships of people with disability here. This post was originally published at https://helenries.ca/covid19/.



It will be about six weeks since we have been at home. Soon it will be six weeks since our illusions of Canada moving towards being a more fair society have been shredded and are now lying in tatters on the floor. As we survey the escalating devastation to the disabled because of Covid19, none of the progress we thought we had made seems relevant anymore. 

Covid19 has shown us that Canada has two classes of people, those that are expendable and those that aren’t. While many talk of Covid19 being the great equalizer, it is not. Early data indicates disabled people, racialized bodies, older adults, the incarcerated, the homeless and others who are marginalized are bearing the brunt of this devastation. 

On our own again

Our brothers, two middle-aged men with Down syndrome, are unfortunately among those considered expendable. Paul and Brian live around the corner from each other. They are friends and they used to go to the same high school. Most importantly, both of them are well-loved, especially by us, their sisters. 

When Covid19 hit, we as sisters and family caregivers felt powerless and terrorized. We spent time on the phone comparing notes. We tried to anticipate and plan how to mitigate its impact on our brothers. What are you doing about your brother’s home supports? Are you going to pause support? How did you explain the virus to him? Did he understand? What are you going to do if he gets sick? If he gets sick will we be allowed into the hospitals to support him or will he be alone? What if he needs a ventilator? Would he even be given the same access to one as others? Thankfully we had each other to consult and console because at first there was nothing available to advise or inform us. 

While this may sound unusual to some, if you have or love someone with compromised health, the practice of social distancing and guarding against infection is not new. We may not have had a collective name for these things, but we’ve taken similar measures in the past. Covid19 is unique though because all those same measures we take to protect our brothers every time there is an aggressive virus (e.g. H1N1) are the same measures that everyone is now taking (staying in, limiting exposure, wearing masks, hand-washing etc.). 

Just an afterthought

The fear we felt leading up to Covid19 reaching a pandemic level was rooted in our collective experiences trying to advocate for a good life for our brothers. People with intellectual disabilities are an afterthought on a good day, except perhaps with token measures aimed at scoring political points by short-sighted governments who chip away at shrinking and meagre support to please populists agendas.  Our brothers are rarely considered in planning, never-mind a crisis plan. The rapidly evolving nature of Covid19 left many disabled people on their own, many suddenly separated from their families, without support, and like our families alone in determining what to do. 

People with Down syndrome and other intellectual disabilities are disproportionately impacted by Covid19. It is not just underlying medical conditions that put them at a greater risk of serious complications. As the pandemic unfolded the world over we saw how disabled people were being sacrificed on all fronts (access to health care, policies to support those in need of food and shelter etc.). For disabled people there is a pervasive perception that they have little to no social and economic value. This comes from deep-seated and systemic forms of ableism that reinforce the idea that these are lives not worth living. 

As people wring their hands with worry for the folks stuck on cruise ships, staff working at a group home for adults with disabilities in Markham Ontario were dealing with an evolving and dangerous situation as Covid19 rapidly spread throughout the residence.  For years we have been warning that this would happen – underfunded care and support labour, mass facilities that continue long after the promise of deinstitutionalization, a lack of basic and needed materials for front-line workers were a recipe for disaster. While we warned of this, cuts continued to chip away things like health, housing, inspections etc. People were already dying because of these conditions, Covid19 created the perfect storm. Both in Markham and across the globe disabled people, unpaid caregivers, underpaid support and care staff, and family members have been left to navigate life and death decisions alone. It has always been like that, and it is not different in the era of Covid19.

The one difference this time is that people are openly considered expendable, making the sometimes thinly veiled rhetoric of ableism and the canyon of inequity suddenly obvious. The elderly left to suffer through Covid19 in private long-term care facilities built for profit, prisoners locked inside correctional facilities, those living in the shelter system, and let’s not forget the minimum wage workers, many new to Canada, serving on the front lines for barely livable wages. 

We can’t afford to go back to normal

Like many other siblings, we have dedicated our lives to ensuring our brothers could have the crumbs of a good life. Those include things many non-disabled people now mourn, the things they regret taking for granted. Our brothers never had access to those things. If you cannot imagine weeks or even months living like this, imagine what it is like to live with stress, uncertainty, communication challenges, unemployment, social isolation, and lack of access over the course of a lifetime? We are frustrated that we find ourselves worrying once again for access to basic things like health care for our brothers against a backdrop of public discourse debating a premature return to their sense of ‘normal’ and restoring the economy at the expense of those who are vulnerable. 

So as business, government and institutions engage in the self-congratulatory grandstanding over the services, plans and economic stimulus they have cobbled together under duress, our brothers and many like them, are once again reminded that their rights are not absolute, but rather a byproduct of the generosity and mood of the non-disabled world. 

As others pine to return to their “normal” we are begging for this collective spirit of solidarity to continue and extend to those among us who have been left behind. Covid19 has revealed the many cracks that have made this virus so devastating. We can no longer afford to limit our collective action to glossy and performative campaigns – the mismatched socks you wore on World Down syndrome day did not facilitate the policies and supports our brothers need to live good and valued lives. Simply put, our brothers and many others cannot afford to go back to “normal.” Our new “normal” must include our brothers and others in tangible ways. Vote for policy and leaders that value their lives and invest in the support we all need (health care, affordable and accessible housing, community supports so people can age in place, living wages, poverty reduction etc.). Reject populist agendas that falsely and divisively pit our brothers’ needs against your immediate wants. We should forever be ashamed that in our last provincial election we voted on the promise of buck-a-beer and supported a political party that reduced the necessary inspections of our now ravaged long-term care facilities. We simply cannot afford to prioritize our wants at the ballot box and instead must collectively hold our leaders accountable and ensure that each and every one of us has their needs met. Anything short of this is a collective admission that we are ok with the expendable nature of some lives for our own profit.

Jihan Abbas PhD can be found on Twitter at https://twitter.com/JihanAbbas

Helen Ries can also be found on Twitter at https://twitter.com/helenries

This post was originally published at https://helenries.ca/covid19/.