Please keep in mind this was written before we knew COVID is airborne, before there were vaccines, variants or very much information at all. This is a longer version of a draft I sent to CBC at the time. I cut it before sending it and it was still deemed too long. What was desired was a version that talked about how I was having a hard time getting groceries.
I am a ‘but only’ — as in ‘but only those people are likely to die from Coronavirus anyway.’
I am disabled, poor and live in a large social housing complex in downtown Vancouver. Here is what I know about Covid-19 and why it should matter to you (even if you don’t care about disabled people or poor people or disabled poor people).
I know it is unconscionable to hold a press conference to tell people to stay at home in a city, province and country where thousands have none and announce no plan for immediately providing them with even a temporary one that meets their needs and is safe during a pandemic.
Prior to and during the initial onset of my autoimmune disease I was working and living with my then boyfriend. Before he left his income prevented me from being able to collect disability benefits. My bank account was drained and then closed. When I went into the hospital he gave notice to our landlord and moved to another city and I lost my home. And much like the social distancing video showing one match moving out of place so the fire doesn’t spread, the chain reaction from my illness to my homelessness could have been halted at any point by having the right policies in place.
Decades of strategic cuts to our social safety net by neoliberal governments means that when you fall, you fall right through. Coronavirus has turned the ground where you land into a potential mass grave. We should know this by now given the one we’ve allowed to be filled by the still going on overdose crisis caused by toxic supply.
Likewise I fought every attempt to place me in a nursing home for all the reasons that disabled people have for decades.. I am very worried about what is going to happen to people in those places now. They too are homeless and need suitable and safe housing immediately. Likewise prisons, group homes, youth detention facilities…all these are places where we lose people without a pandemic as an excuse to do so.
I know disabled people living in poverty need money NOW— immediately and ongoing. We really needed it two weeks ago.
We need a one-time sum for buying whatever supplies are left ($1500) and then a raise the rates ongoing ($2500/month for disabled people and $2000 for non-disabled people) – even if temporary (we can debate this later) – for the duration of the pandemic.
In some cases people are going to need that money in cash. Helping poor people using middle class tools is like building a house with kitchen utensils. You will look very busy and no doubt complain about how hard you are trying but you will also accomplish very little.
But it’s also a pointless waste of everyone’s time and resources right now (and arguably always) to be sorting deserving from non-deserving so the money needs to be distributed across the board to everyone, recipients of general welfare and yes, even the wealthy banker’s wife.
At the same time no one should be under any illusion that the money distributed to disabled people – call it basic income if you wish – will be sufficient minus funding for our prescriptions, medical equipment, supports and other programs. This is not a replacement.
I know it is irresponsible to go on TV and tell everyone not to panic but do nothing to safeguard and be distributing (or at minimum have a plan to distribute) the supply of things people most vulnerable to the virus need. They need to organize, regulate and control the supply chain to ensure equitable access to essential resources.
The government was aware, or should have been, that the events we have witnessed this past week would unfold as they did. It was entirely predictable that people who could, would stock up and that an unfortunate number would hoard unnecessarily and others would attempt to profit from the pandemic by buying up everything on the shelves.
Meanwhile for all the condescending shaking of heads about ‘panic purchasing’ you know who isn’t driving to Costco and filling up their SUV? Poor people.
Even in non-pandemic times I rely on online grocery delivery for accessibility reasons. Unfortunately the services I use regularly are now being used by everyone and for larger orders than usual so instead of next day delivery, delivery is days away. Between the time I place the order and the time when the order arrives things are removed from my list by the store as they become out of stock.
Without intervening in the system of distribution to ensure some form of equity it will function as it was designed to – inequitable distribution of resources.
The provincial government actually has a system in place that could assist with specific COVID related supplies right now. I used to order and have delivered my incontinence products through a government supply warehouse. The products were covered by BC medical. The government needs to expand what is distributed and organize it in such a way that safeguards the rights, needs and lives of people doing the delivering and people receiving the deliveries.
I know there are and will continue to be more additional costs and more barriers.
For many disabled people dietary and other needs can be highly specific, expensive and sometimes require more of the things people who don’t have those needs have chosen to fill their garage with.
There are and will continue to be less supports we count on to live. Home care workers will get sick. Family and friends will get sick. The same family and friends who the government has instructed disabled people to send out to do their shopping for them – a statement made by a government who has all the facts and data at its fingertips that in fact disproportionately disabled people who are poor live alone or are single parents.
I know that our systems don’t function nearly as well as advertised particularly for some of us and especially under pressure – and they were pressed long before a virus came along.
Our systems have been and are pressed by under-funding, under-staffing and a mindset that have treated healthcare and social services as a business. The business of healthcare is bad at pandemics in ways that science and science-based medicine is not.
Canada has less per capita hospital beds than the UK or USA (data). It wasn’t always this way. We don’t need conservative think tanks to solve the ‘mystery’ behind wait times and patients sleeping on stretchers in hospital hallways. Our healthcare system needed then, and needs now, more public funding and instead it’s been starved of it. That needs to change NOW and ongoing. All levels of care and support need immediate injections of funding and plans to add capacity – everything from 911 to post-hospitalization supports like home care and occupational therapy assessments.
I know Covid-19 means it’s more certain I and other disabled people will be on the losing side of medical ethics decisions.
In Italy anesthesiologists issued a utilitarian protocol for determining whose life was worth saving, instituting age cut-offs and screening for exclusion of those with “preexisting conditions” who might take longer to recover. Some people online found this shocking. I did not.
Who gets help, for how long and which kind of science-based medicine is covered is something our government has been making decisions about for a long time.
This criterion was applied beyond Coronavirus patients to anyone with any illness or injury requiring ICU care.
The line between science and bias is hard and fast but it is also easy to miss. Some very elderly people are surviving. Most ‘comorbidities’ are anything but uniform across people – or time – and BMI may be more effective at measuring wealth than health, not to mention that many disabled people are on medications that cause weight gain.
It’s also remarkable how quickly people will accept things that are human caused as being inevitable. The number of per capita hospital beds in Canada shrank when it should have grown. Tax cuts were waved as enticements for votes instead of responsible governance.
I know this because when, after months of physiotherapy, which was only available to me because I was in hospital at the time anyway, I stood and took steps in the bars for the first time in years, I was allotted the same recovery period as someone who had undergone a knee transplant. Not long after discharge, without the physiotherapy that I was told I was greedy and selfish for wanting, contractures set in and I stood for the last time I ever will in 2010.
I know Covid-19 means everything on the other side of my door is something and someone who is even more a potential threat to my health, safety and well being than usual. People are not going to change their behaviour without a considerable amount of public education and policy in place, including policy that makes those changes possible. Strong, firm, clear directions are essential. There will need to be regulations and rules.
I stopped going outside as soon as the virus started its world tour.
Even before there was a pandemic whenever I left the house it required preparation, research, a plan and a back-up plan. It also meant knowing that all of that might not matter.
I knew not to trust most of you to do the right thing for those around you or to listen to instructions about why and how you must do some things differently than you are used to doing them.
It can take an absurdly long period of time to convince a non-disabled person that “just one or two steps” is not wheelchair accessible. They honestly don’t seem to understand and it baffles and frustrates me but I’ve come to accept this is part of the reality I must navigate. People will run to walk in front of me when I’m going down a ramp and then abruptly stop if their phone rings, placing the back of their legs in direct range of my titanium frame. They will grab my wheelchair from behind without asking and push me so that I tip and fall face first on the pavement and then look at me as if I have done something to traumatize them.
I know that even if I am explicit, and give clear direction and explanation, sometimes nothing short of shouting and commanding them to STOP will make them.
And I know that people on the street aren’t the only people around me who don’t listen, don’t care, have no clue and/or respect for standards, protocols or guidelines that are necessary for anyone other than themselves. Add in policy makers at all levels, planners, architects, designers, doctors and every head of every system and structure we have in place.
Accessibility is really just designing policy, programs, services, things, spaces or places with people in mind as we are seeing now as things that were deemed too extraordinary a request for disabled people are suddenly very doable now, like online learning and meetings. But it is still a long way from saying these things can be done and doing them in a way that is accessible to everyone. Adapting from being a person who walks to being a person who never does is more than just a matter of doing things at a different height. Pandemic design is about more than moving from everyone in the same physical space to everyone in the same virtual space. This is a major transition and requires invention, creativity and will invariably mean new frustrations. The likelihood is people will react to these frustrations with overly nostalgic memories of the way things used to be. I can’t just decide I want to walk again if I get frustrated by barriers. People need to learn the language of barriers and follow disabled people’s lead.
I know Covid-19 makes bad design even harder to live with and perhaps impossible to survive.
Narrow hallways in apartment buildings that make social distancing impossible. The size and design of elevators likewise. The lack of any outdoor space. The shrinking of what space we’re allowed to occupy and the rebranded closets known as micro apartments struggling to accommodate the concept of storage and COVID supplies will all impact people’s mental and physical well-being more dramatically than they already do.
I know Covid-19 all means less for and of those of us with less — unless those with more power, health and money do more right now.
I have lived my entire life as if I were a member of society and that my decisions and actions should be governed accordingly and now with Covid-19 I feel abandoned by society more than ever before and question whether I am on the margins of one or if it the truth is nothing more than the outline of one exists.
The feeling of being tossed aside by your fellow humans is not new to me. Capitalism’s cost/benefit analysis of me makes me an unsuitable investment. I have a feeling you are all about to experience a little bit of this.
Why does any of what I know matter to you? Well the simple truth is everyone would be fairing better today if everyone had listened to and included disabled people all along. We are the original and best adapters; the hackers before there were any computers to hack. We see the cracks and sitting in the margins gives us the perspective to tell you when the mirror is level. You should have been listening all along but can you hear me now?
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