Throughout this pandemic, I have found myself becoming increasingly preoccupied with societal attitudes and inadequate medical standards.
Among chronically ill, disabled, elderly, “essential” but expendable, migrant, and poor communities there is a sense of being sacrificed for economic reasons. I am angry at the dismissiveness of precautions, at the refusal to wear masks, and at the flippancy with which people refer to the small percentage of those who may die. Newspaper headlines debate who is truly worthy of care, while lifesaving medications are becoming inaccessible due to hoarding. I am part of this small percentage whose immune system is not strong enough to risk COVID-19 and whose monthly medication supply remains precarious. My anger stems from knowing the ease with which society has finally found the means to become increasingly accessible in educational and job opportunities and the fear that it will just as easily be taken away. I am also envious that life continues for most, while my isolation remains.
Increased reports of people unable to recover fully from COVID-19 within prescribed timelines rings eerily true of my journey to diagnosis and treatment, as doctors fought amongst each other, disagreeing as to why I continued to deteriorate despite their standards. Many of us exist in a liminal space, not quite fitting into outdated regulations and inadequate research, while growing sicker by the day. The medical system’s failure to keep up with rapidly evolving illnesses and the sheer magnitude of the COVID pandemic fills me with fear for those affected.
I often joke that I came out twice in my life, first as queer, and recently, as disabled. However, this laughter is often a coping mechanism. For many, coming out is often difficult and traumatic, as individuals are forced to choose between living one’s truth and, if possible, living in the relative safety, but also shame, of denial. Coming out can also often lead to violence and loss of community. I have struggled for years with queer identity in the Eastern European diaspora, and now I struggle coming out into hyper-visibility as a cane user in my thirties. Although my health had been deteriorating for many years, it truly fell apart in 2018.
But humans have an incredible capacity for survival, and somehow we rebuild and continue to rebuild despite tragedy and complications. Despite the joy I feel as the world began to open up to me once again, it is simultaneously devastating, not as a result of my illness, but by the constant societal reminder that I am less than, that I am somehow damaged and broken.
I sense my presence causing discomfort, as friends drift away and strangers refuse to make eye contact in public spaces. As if my state were too much of a reminder of the fragility of life and of our bodies, that we can all become disabled in an instant, that we will all age, that we will all die. As if disability were something to be ashamed of. As if disabled bodies were not a source of pride, a source of joy, a source of beauty. Despite the struggles, I am fortunate because I am surrounded by those who broke my fall and provided me with shelter and safety. I am fortunate because, despite what I have endured, my privilege has allowed me to make it this far. And slowly I make my home in this new, albeit changed, body with a newfound understanding and respect.
My education continues thanks to Athabasca’s online format and ProctorU. Many chronically ill and disabled students are often forced to discontinue their education as a result of lack of accommodations, exclusion, and bullying. Years earlier, I had to leave school because of health; this time, my education continues around my medical schedule.
When I began my freelance career, I made the decision not to hide my illness, fully aware that it would affect my hire rate, that people would doubt my competence or my ability to be productive. Although this body allows for many things, it does not allow for a typical job. Those who require accommodations deserve flexibility to contribute in our own way, to sustain ourselves and lift ourselves out of the endless cycle of poverty and systemic abuse that illness and disability often bring. Despite this knowledge, I often hide how ill I truly am, as I continue to produce work, not only to support myself, but also, subconsciously, to prove that my life has value. A lifetime of societal and internalized ableism under a labour-centric economic system is difficult to overcome.
July is National Disability Month in the United States, a movement that has spread unofficially to Canada as well. According to Statistics Canada, disabled individuals make up 22% of Canada’s working age population and 6.2 million Canadians live with at least one disability. Despite varied bodies, minds, and experiences, we are the world’s largest minority, and our voices matter.
Models of Disability
Various models of disability exist, two of which include the medical model and the social model. The medical model links an individual’s disability with the limitations caused by physiological or cognitive health problems, often characterized as deficiency or abnormality, and seen as something that must be treated or cured. In contrast, many disability justice advocates and individuals subscribe to the social model of disability, which sees society as disabling individuals from full participation through a lack of accommodations.
Increasing Economic Struggles
The majority of chronically ill and disabled Canadians live well under the poverty line. Disability benefits are often difficult to obtain and keep recipients in a cycle of poverty. In Ontario, the Ontario Disability Support Program (ODSP) is $1,169 per month, while many others survive on Ontario Works (OW), where a single person receives $733 per month with a $200 exemption before the government begins clawing back 50% of earnings. ODSP has not been substantially raised for decades and both programs fall under the poverty line. The government has only recently eased restrictions on assets, with a limit of $10,000 for OW and $40,000 for ODSP. 1.6 million Canadians with disability are unable to afford required prescriptions, aids, and devices. In many countries, those who get married are further penalized, often resulting in unequal power dynamics and abusive situations.
Pre-pandemic, these amounts were almost impossible to live on in most Canadian cities, including major cities, with their close proximity to hospitals, appointments, and specialists. During this pandemic, CERB and CESB payments from the federal government have been treated like income for ODSP and OW recipients, with 50% of the provided amounts cut back from ODSP and OW payments after the first $200, despite rising food and household supply costs, special diets, medications, and inaccessible transit, while many are simple ineligible.
Disability History
The long and complex history of the disabled community is often difficult to track, as many individuals were simply excluded from the historical record. The record does include the barring of “undesirables” or those who could not support themselves (Nielsen 100) during immigration and industrialization, the rise of forced sterilization and increased institutionalization (Nielsen 66), and the so-called “ugly laws” seen in the United States in which forbid “any person who is diseased, maimed, mutilated or deformed in any way, so as to be an unsightly or disgusting object, to expose himself to public view.”
Despite successes and society’s proclamations of progress – especially increased rights, deinstitutionalization, and independent living movements, and overlap with the civil rights, queer, and feminist movements (Nielsen 160–162) – a great deal remains the same, including the criminalization of any sort of apparent difference in the eyes of society, including disability, mental illness, poverty, and skin colour.
When the disabled community is represented, it is often as a source of derision, as a source of pity, or as a foil to abled-bodied individuals. Often, the disabled community, in its countless manifestations, is expected to be inspiring and motivational, as opposed to simply being human. We are all familiar with the countless inspirational memes that ask, “What’s your excuse?” juxtaposed with an image of someone in a wheelchair performing extraordinary feats. The implications are clear; disability is only acceptable if it inspires, reduced to simply existing for the sole purpose of making abled bodied individuals grateful for their lives. It also implies that disabled individuals could “overcome,” if only we truly made an effort.
In her memoir, Falling for Myself, Canadian author Dorothy Ellen Palmer sums this up succinctly as she reveals the “real function of inspiration porn: to assert narrative control. Ableism only accepts two stories: disabled people can either die quietly or ‘individually triumph over’ disability … [It] cunningly plants the lie that all disabled people can individually overcome disability, if they really want to, if they just work hard enough, it absolves people of any responsibility to see systemic ableism, or to fight it with us” (Palmer 180).
The constant reminder that you do not belong, that you are less than, that you should not take up space remains. I feel this acutely when I leave my home; as if I dared to break some sort of code that people like me should be hidden from public view, so our bodies do not offend. I have found myself being addressed in infantilizing voices; I have well-meaning, but ultimately harmful, people taking away my agency by deciding for me that I need help, as opposed to simply asking. I have struggled with the term disabled, as a result of my own internalized ableism, the privilege of living many years in an able, albeit, rapidly changing body. I struggle to this day, feeling as if I do not deserve to claim it at times; despite the fact, every aspect of my life has been altered, despite the fact that the world is now full of limitations and accessibility concerns.
The Disability Justice Movement
As a movement, disability justice evolved from work by the queer disabled community of colour, including members of Sin Invalid, a disability justice-based performance project, who stress, “Disability exists in every sector of society: in immigrant communities, in prisons, in religious and spiritual communities, among veterans and homeless folks, among children and elders and everyone in between, so every movement has to advance disability justice, and vice versa.”
Chronically ill and disabled individuals are often treated as an afterthought, a burden on able-bodied society, despite transcending age, race, ethnicity, and gender. Disability justice means justice for all. Our pandemic has truly brought our shortcoming as a society to the forefront. We live in a society in which our judicial systems continue to fail to tackle issues of race, poverty, mental illness, and disability without resorting to violence. Nearly half of all those killed by police in the United States are disabled, with a majority, people of colour, with systemic problems apparent in Canada as well. Our economic system is on the brink of collapse from consumers simply buying only necessities during the pandemic, and many of us live one paycheque away from financial ruin. As a society, we continue to prioritize individualism initiatives over the health and lives of the most vulnerable in society. We vote in governments that defund education, health care, and social safety nets, that refuse to create increased rehabilitation services, safe injection sites, and access to therapy, but prop up transnational companies and violent institutions.
Cries of “all lives matter” coupled with the refusal to wear masks and vaccinate to protect vulnerable communities, despite the knowledge that Black and Indigenous lives in Canada face disparate rates of systemic violence and medical racism, especially those who are disabled and trans. These communities are dying from COVID-19 at disproportionate rates as a result of historical and current systems of oppression. Calls for straight pride month and white pride month, without understanding that prides exist to celebrate triumphs and acknowledge struggles, many of which continue to this day. Human rights for those underserved in our communities does not equal less rights for the majority. Only when dominant power structures celebrate and protect all lives will the need for pride affirming the very right to exist become superfluous. Refusing to acknowledge the struggles and celebrations of the overlapping disabled, queer, and BIPOC communities simply reinforces the idea that, in our society, many lives do not matter.
When those individuals who refuse to wear masks speak of their rights and freedoms being taken away with thoughtless comparisons to oppression and tyranny, I wonder if this is the first time, many have been told that the world is not theirs for the taking. As the closure of the world’s borders have shown, passport privilege exists, and like many of the world’s citizens, Canadians now acutely sense the absence of ease with which we crossed borders for vacations and relied on the Global South for resources. For the majority of the world’s citizens, borders are obstacles, and often-terrifying ones.
As a society, we need to come from a place of believing those who come forward, whether those facing health issues, or women during #MeToo, or those currently in #BlackLivesMatter. We know how difficult and unforgiving this world can be, so when someone confides that they are being harmed, we believe them. Believe survivors; believe women when they are in pain, in particular Black and Indigenous women who die in disproportionate rates because of medical racism. Despite my privileges, I too was dismissed and undiagnosed for years, until my illness rapidly progressed.
Moving Forward
I ask those who have spent these four months of these pandemic-living-modified, increasingly impoverished and uncertain lives, to understand that this is daily reality for many chronically ill and disabled individuals. Keep in mind the added uncertainty and fear brought by this pandemic, and lack of adequate medical care that has exacerbated the situation for many.
Although I am angry, I am not bitter, and I continue, because my life has value, as do the countless lives of those in our communities. We are all worthy and pointing out difference is not, as some say negativity and divisiveness; pointing out difference and inequity is hope because it gives us the option to redress historical and current injustices. Change is not possible, until we first acknowledge that our society is fundamentally flawed.
So I say, go enjoy your summers and your lives, but remember that this pandemic has not ended. I am not asking you to feel guilty, only mindful and careful. Remember those of us at home who do not cannot as easily access the often unearned privileges that many enjoy. I only wish to be protected and included in fair and equitable ways, which is what everyone deserves.
I leave you all with a quote I often think of during these uncertain days. Above a photograph of Black disabled activist and artist Leroy Moore, one of the founders of Sins Invalid, a caption attributed to Patty Berne reads, “All bodies are unique and essential. All bodies are whole. All bodies have strengths and needs that must be met. We are powerful not despite the complexities of our bodies, but because of them. We move together, with no body left behind. This is disability justice.”
