The COVID-19 pandemic has changed the life of almost everyone on the planet. There are a myriad of new precedents being set, such as telecommuting and telemedicine, which the disability movement can use to gain accessibility in everyday life. In contrast, there are daunting measures being taken in response to the lack of medical resources and how governments will “ethically” allocate them. These measures have highly disturbing effects on the disability community.
Most of the telecommuting measures are creating greater access to a society that disabled people have so far been limited to, or perhaps have never experienced. This could create a world where social participation which has previously been denied to disabled people could become entirely possible. A future where accommodations are not seen as special treatment or impossible, but the norm. This is where we are headed, and the future possibilities for disabled people are opening up more than ever before.
But we have to get through this first. We have to survive in the medical systems which hold underlying, pervasive attitudes that disabled lives are not as ”high quality” as non-disabled lives. The thought that disabled people can be devalued in comparison to a person with no previous conditions is so pervasive that major publications around the world are printing these ideas like it is no big deal.
We are living with overwhelming societal apathy in which it is considered common practice not to accommodate our disabled people. The sheer amount of inaccessibility and institutionalised ableism (that is, discrimination in favour of ablebodied people) in our society contributes to the concept that disabled lives are not as “valued” as other lives. This world is not “built” for disabled people, the space is unavailable and the platforms non-existent.
Eugenics is a movement which began in the early 1900s but was notoriously promoted by Hitler and the Nazis. It is a philosophy which advocates for the human race to eradicate disabilities and disease, in an attempt to create a “superior” human race, through actions like forced sterilization of disabled people so they can’t procreate. The thought process is that mentally and physically disabled people are inferior to the able bodied and healthy. Using the word eugenics might scare some people, but the sum of these barriers directly validate the eugenicist concepts that the disability community have historically experienced.
The response to the COVID-19 pandemic has been laced with eugenicist concepts, mainly around the fact that there may be a shortage of ventilators. The talk is all over the internet and the news. The question is this: how do we ethically prioritise healthcare and determine who is worthy of the life saving device?
Medical systems usually have a first come, first serve basis. It is quite shocking to realise just how fast this has changed to implementing eugenicist guidelines, even before a ventilator shortages exist. In Alabama, the recent Emergency Operations Plan lists underlying conditions (including heart attack, dementia, and severe brain injury) as a guideline for who not to allocate ventilators to. Written into an operations plan, despite the clear discrimination under the Americans with Disabilities Act (ADA). Or take a look at the UK, where the NHS published a Covid 19 Rapid Guideline, in which the Clinical Frailty Scale or CFS is used to determine whether one should be spoken to about “do not attempt cardiopulmonary resuscitation orders”, among other frightening suggestions. This is meant for someone who scores a 5 or higher on the CFS, the “mildly frail” category in which many disabled people would qualify.
These are not simply concepts anymore. They are becoming guidelines. Disabled people are afraid and rightfully so, as they are quite literally fighting to prove that their lives are equal to other lives. There is no ethical way to prioritiSe healthcare in this manner. Nobody can decide which life is worth saving and which is not.
We have yet to see guidelines like these published in Canada in response to COVID-19. On March 24th 2020, a coalition of Canadian disability organisations published recommendations to the federal government on issues specific to the pandemic, including the call for a national values statement on the equal rights of disabled people to access medical care. There has been no official response yet but the federal government does have the Canadian Pandemic Influenza Plan already in place. In Annex H entitled “Resource Management Guidelines for Healthcare Facilities During and Influenza Pandemic”, under Section 2.1.4 ”Plan for Patient Prioritisation”, it states “If supplies, equipment, and access to intensive care must be rationed, a fair and equitable prioritisation process will need to be established”.
This does seem to be an indication of the prioritisation process being the same as it usually is in our medical system, on a first come first serve basis. It in no way implies that disabled, immunocompromised or elderly people specifically would be on a “lower scale”, thankfully. Still, the watered down eugenicist concepts of the greater public and the blunt guidelines being promoted in countries around the world today must be continually fought by the disability community. Unfortunately, this is an ongoing battle.
As for accessibility issues that can be dealt with on an everyday, personal level, there are plenty of issues that anyone can help with by simply changing their actions. The Accessible Canada Act passed in June 2019 as the first legislation dedicated specifically to prohibit discrimination against disabled people. This is “an act to ensure a barrier free Canada”. We know that disabled people face many barriers in their everyday lives, but what are they exactly? This is a highly personal question for each individual. Even the language used varies depending on the person. Most disabled people prefer identity first language (Disabled Person), yet some prefer person first language (Person With Disability). For the record, whatever the individual prefers is the acceptable term.
There are the more common sense barriers we know of, like a lack of elevators or a work space needing ergonomic adaptations. Then there are the barriers that aren’t necessarily visible right away. The Canadian federal and provincial disability benefit programs are set far below the poverty line, anywhere between $700 – $1,200 a month (note: the federal government recently acknowledged that $2,000 a month for the Emergency Response Benefit is a realistic basic living wage). Living in poverty negatively impacts health. It often means less nutritious food, medicine rationing or discount mobility equipment that isn’t quite what they need. The ramifications of the societal isolation that comes with this poverty often leads to chronic depression and anxiety, compounding even more health issues onto the disabled population. These are larger issues, but even the relatively smaller ones need to be considered. A barrier-free Canada does not only mean work accommodations, living wages and federal building access. It means access to everyday joys, the stuff of life, like normalising closed captions at cinemas.
People with invisible disabilities are greatly affected by these issues as well. When they walk out of their cars from the disabled stall, or take the reserved seat at the front of the bus, they get judged or spoken to by people who think they are taking advantage of the system. This ableist trope comes from the myth of faking disability in order to “get the perks” which is, indeed, a myth. The trope still exists because the concept is still prevalent in our society today. How else are they supposed to accommodate themselves? By telling the entire bus their private medical history in an attempt to prove their need? Anyone can defend against everyday ableism by speaking up if you witness a situation like this. This is an example of how to be an ally and fight stigmatisation. Simply believing these people when they say they need accommodations.
The exhausting need for disabled people to be their own self advocates is in itself a barrier. Non-disabled people can learn how to be comfortable in asking a disabled person what their specific needs are, and if and when they need to ask in the first place. Perhaps you think it isn’t rude to ask a disabled person what they need in a given situation, but one would argue that it is rude to assume that you understand their physical or mental limitations. It is best not to assume that the disabled person may need help in the first place if they have not asked for it.
Now that we understand that there are all kinds of barriers for all kinds of people – how can we work to eliminate them?
As a result of COVID-19, accessibility measures are being used across the globe for the abled population. The difference is that most are not referencing these as “accessibility measures” at all. As the healthy and able bodied population need these measures, there is no doubt in creating them. Why is this not the case when it comes to disabled people?
These measures are swiftly being made with coordination and ease. For example, universities who have refused to accommodate disabled students by letting them work online have gone on to creating entire online platforms within a week’s notice. When the abled need these accommodations, there is no proof needed, there are no administrative hoops to jump through, and it is done without hesitation. (The hashtag #AccessibilityForAbleds has people sharing their stories of being refused accommodation and seeing them made now for the abled population.)
Historically, accommodating disabilities has driven innovation, and many inventions created for accessibility purposes have now become the norm in our society. Did you know that plastic straws became normalised in hospitals as an accessibility tool for bed bound people? Or that the typewriter was invented so a blind person could write letters in privacy without having to dictate to another person?
Changes being made to accommodate people during this pandemic are inadvertently creating access for disabled people, which could become one good silver lining. Going forward we need to advocate to policymakers for these precedents to stay established so these accommodations can stay indefinitely. There is no valid reason why these accessibility measures need to end.
Working from home and teleconferencing in the workplace have become commonplace. People’s differing schedules are now being accommodated because something that is beyond their control is happening. Disability can be viewed the same. Perhaps you have an illness which means your cognitive function only works long enough for a few hours in the afternoon to get work done. It would have so far been difficult to find a company that would have been willing to accommodate that for a worker, but that can change. The same differing schedules are being accommodated now for issues beyond the worker’s control. Why not provide that flexibility for the chronically ill workforce?
Schools are making almost all classes available online, which opens up the opportunity to disabled or chronically ill, home bound people to be able to participate. This is life changing! It means so many more are included, without the stigmatization of fighting with the university or school to become included in the first place. Other institutions which disabled people have had to fight to be included in, like the medical system, are now offering telemedicine. This is another example of what true access looks like. It saves valuable time, money, and energy for patients and doctors alike.
Accessibility is for everyone. The more we include the participation of everyone in our society, the more diverse and creative we get, the more we drive innovation and create better living standards for everyone. Let’s remember these precedents being set now, in these unprecedented times, and use them to further establish equality in disability rights and occupational justice.
Author: Kate McWilliams
Bio: Kate McWilliams is a disability rights advocate living in Canada. She became chronically ill with CRPS in 2014 and has since become a proud part of the disability community. She writes on disability rights, chronic illness, pain, and life with CRPS on her website www.kateandcrps.com