ActivismAdvocacyDisabilityDisability Rights

Systemic Injustice – the Views of a Disabled Woman in June 2020

Right now, the world is trying to manage a pandemic while centuries old systemic racism in the US may have finally met its match as people take to the streets, as long as “we” don’t get bored with it, and move on to the next news cycle expecting to see something different on our screens. As a white woman, I know I have massive privilege, and I know I have little or no understanding of what it is to be black, and particularly a black man, and particularly in the US. I know that when I moved to Canada 22 years ago where I was shocked at the implicit and explicit racism acted on our indigenous population, so I know that as a nation we are not innocent of this original sin.


Almost 12 years ago I became disabled. Throughout my career and volunteer work, I thought I had been a pretty good ally to disabled people. Becoming disabled taught me that I had not. I now know that my actions and beliefs were based on systemic ableism – ableism that surrounds everything we do and everything we see.


To be clear, I am not writing this as a piece of “what-about-us-ism”, complaining that while we focus on racism we are forgetting about all the other injustices in the world. I can try to understand the horror of racism and want to learn my place in this fight as a white woman at the same time as continuing to highlight the systemic injustices faced by disabled people, which are being exacerbated by our current conditions of living under a pandemic. It’s not one or the other. It’s both, and more.


“Shock and horror” seem to be  words that are used regularly at the moment, as easily, and perhaps as lightly, as “thoughts and prayers”. As we work our way through the pandemic, we hear the news reports of multiple long term care facilities in multiple countries where multiple people have died, and that in some of these homes the conditions have been appalling. The news highlights that these people are seniors. Let’s be clear. Every one of these people is disabled, and some are not seniors. People live in long term care facilities to receive care, not because of how old they are – you don’t turn 65 and move into long term care. You move there because there has been a change in your capacity to care for yourself independently. You are disabled.


Everyone of these people who have died while being a resident of a long term care home was disabled. When you read that, what’s your reaction? “Well, they were old, they were disabled, what else could they have expected?” Sounds like “they resisted arrest, they were struggling, they broke the law, what else could they have expected?” to me. Both sentiments equally appalling in their own very different ways, needing their own very different urgent solutions.


We hear the metaphor of “bad apples” being applied to police in the US, that not all police behave like that. As a response, we hear that there are systemic issues of racism that transcend individuals. Equally, not all long term care facilities have cockroaches running around in them, with soiled bed linens lining the hallways, and people living in the most inhumane conditions possible. However, there are still systemic issues with living in a long term care facility, and these conditions transcend the conditions created in a crisis. A care home is an institution, and the people living there are institutionalized. Can you choose when you bathe? What you eat? Who can visit you and when? Can you come and go as you please? If you live in a long term care facility you cannot. Your freedom is curtailed. You are institutionalized.


Perhaps you think that this is sad and awful, but only applies to a small portion of people, so that somehow makes its okay, pretty much the way only a small proportion of Black Americans are killed by police, so perhaps it’s not that big of an issue. However, another common path we share is that these are only the cases that make it to the news. As disabled people we deal with many aggressions and micro-aggressions on a daily basis that try to control and change the way we live freely and independently. I know that this is the same for racialized people, even though, at the same time,  I know that I do not understand what it is to live as a racialized person. I can see parallels while still only claiming to understand the part that is my own lived experience.  


Consider masks. In 2017, Quebec banned face coverings from those delivering or receiving public services, a ban that was implicitly aimed at Muslim women wearing niqabs, while explicitly claiming to be something else. Now, in 2020, everyone is encouraged, and in some cases mandated, to wear a face mask. I guess the niqab is acceptable now? It’s just a cloth face covering after all. There are also reports, though I have no idea how prevalent this is, that black people, particularly men, are being seen as aggressive when they wear a face mask, and are being refused service. For disabled people, masks are a complex issue. Some of us wear them all the time, with or without a pandemic, concerned about our immune compromised status, and wanting to do everything we can to protect ourselves. For others, wearing a mask is a problem. Some of us have respiratory issues that mean we cannot breathe through a mask. Some of us have dexterity and arm mobility issues that mean we cannot put a mask on. It’s an accessibility issue, covered by our human rights in Canada. Wearing a mask cannot be demanded by anyone or any organization. But how does that play out in public? If you’re in a wheelchair, maybe you’ll be given a pass without being challenged, which may sound fine, but really stems from a fear of asking, or from taking pity on us for being disabled. If you’re not visibly disabled but cannot wear a mask, what do you think happens? You are met by looks, even hostility, and challenged on the veracity of your claim to be disabled.


There are cracks in our system that disabled people inhabit constantly. During the pandemic, the cracks have widened, more people have fallen in, and those who were already in the cracks have fallen deeper into the abyss. Crucial income supports have missed sections of the disabled community, and the solutions have often been slow, piecemeal, and inadequate. Even worse, they have relied on disabled people having to have their disability status validated by just the right medico-governmental system that they have struggled to access even before this began. Isolation, anxiety, and depression have all become parts of the regular discourse, which is a good thing, but also one that has always existed, and will continue to exist after the pandemic inevitably passes.


So, what is my message in this? Is it one of doom and gloom? No. It’s one of hope. I see hope for the possibility that we will come out of these combined pandemics – the current health pandemic and the enduring pandemic of racism – as a society that is prepared to confront injustice and take the hard road to fixing it. We all have seen injustice unfold on our screens and we have all felt the fear of vulnerability personally, from the invisible threat of a virus. However, to achieve this hope we need to work hard. I watch a YouTube channel called “Uncomfortable Conversations with a Black Man” by Emmanuel Acho and I know that we must have these conversations, everywhere. If you have privilege, you need to feel uncomfortable, but you also need to be able to ask the uncomfortable questions to educate yourselves – because otherwise, how does change happen? No longer can “we” presume that “we” know what’s best, that “we” understand, that “we” can ignore the injustice right in front of us. However, at the same time, we must all accept that we are not the experts in everyone else’s lives, and “we” cannot presume that “we” know what is best for minority communities. “We” must follow their lead and ask them.


So, anyone want to have an uncomfortable conversation with a disabled woman? I’m here ready to help you out!

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