When COVID19 first came upon us, disability activists were ready to embrace the steep influx in our population. We had hoped that new Long COVID and ME patients would arrive and end up joining our ranks.
But early on it was evident that there would be two types of new Long COVID patients, those who embraced the disability community and those who see themselves as separate.
There are of course many problems with this.
Not the least of which is power in numbers. We tend to work together to support each other's issues, to organize and band together.
Particularly in Disability Twitter, both pre and post elmo, it's difficult to be taken seriously when you favor only one type of disabled people.
And for positive change to happen and be fair to all, we're better working together.
The main issue of course is that Long COVID is a new chronic illness that comes on suddenly, so people have a much steeper transformation. Like many people, some do not see themselves as disabled, or think they are not allowed to use the label, particularly starting, as many do, with a singular disabling condition.
Since they do not see themselves as disabled. though by definition they absolutely are, their thought process defaults to the standard opinion of popular culture, which is the hatred of disabled people, whether directly and with intent or indirectly and perhaps, subconsciously.
This of course perpetuates internalized ableism, and ironically, interferes in the ability to achieve justice for themselves. It also splits them from the guidance of the disability community, many of whom are going through the same struggles, and have addressed many of the problems they will face.
It doesn't help that even some doctors still view accepting disability as "giving up."
Not recognizing what the central problem is will always have you using the wrong strategy to solve your problem.
From a disability justice lens, we can see that one reason Long COVID is not being funded is not simply because the powers that be aren't aware it exists, or how prevalent it is, nor how serious the symptoms are.
Another is that there is a perception that Black people die from COVID more due to race, rather than racism, which contributed to the end of government enforced protections.
Without the benefit of this perspective, these points are easily missed.
That is not to say other issues don't exist or contribute, or aren't a priority.
But if the solution to gaining consideration for Long COVID has to do with marginalization, due to ableism, we cannot achieve the solution merely with education, raising awareness, explanation, our personal stories or representation in media.
If we had the power to provide ourselves with research money into COVID and Long COVID, we would not need to appeal to the government for help.
Public health is one of the functions a democratic government is supposed to have, whether it is a representative democracy, a direct democracy, a republic, etc. The bottom line is that our representatives on all levels from local to federal are supposed to represent our interests, especially when we tell them directly what they are and we are in the clear majority.
It is one of the core ideas behind democracy that the government works for us, not just in return for our tax dollars, but in return for our votes and the privilege of public office.
Only when the people want something evil and perhaps unlawful such as enslavement or genocide, should the representatives then be overriding the decisions of the populace.
But when populations that are marginalized, such as disabled people, attempt to get equal representation, it is not achieved through the same direct routes as they may for the privileged.
That will call for organizing, which will call for common interest, as well as pride and belief in justice for the sub-culture that marginalization maintains - keeping in mind that one in four of us is also Black, slightly more men than women and include 23% of Americans between 60 and 75, 46% of people over 75.
So sometimes it is more than one type of marginalized representation that is needed.
But if you don't think of yourself as disabled, you likely won't see yourself as a comrade of disabled people, due to the prevalence of ableism. You won't learn the principles behind why ableism exists and how it helps perpetuate the systems and institutions that prevent us from receiving equity and justice for the worse health outcomes we have. Nor will you see us as worthy of better health outcomes as world citizens.
You need only recall the rhetoric surround COVID and the lack of COVID protections that would prevent death and further disability, not just during the lockdown phase of the pandemic, but during the second largest surge we've ever had, which we are passing through now.
Were you not part of the larger Disability Community, you may not find out about the inequities that exist between Americans and other nations.
Nor even discover that almost all other nations take better care of their citizens, and have better health care programs that prevent disability to an extent, but that still fail disabled people, often continuing to perpetuate harm.
We cannot "raise awareness" our way into better laws, policies, better healthcare, or Universal Healthcare. We will not be able to gain enough empathy to move politicians and researchers into dedicating more attention and money toward the study of Long COVID.
If empathy were the issue, the hundreds of articles about Myalgic Encephalomyelitis would have been enough to get enough funding for that specific disease as well as Post Viral Syndrome in general decades ago.
Even the prevention of the disease that causes Long COVID is highly politicized. It shouldn't be- it doesn't care if we're from a red or blue state. it will make us ill all the same.
We must be able to organize and demand justice to get funding for Long COVID and action for prevention and protection, as well as changes to Public Health, especially since it is more profitable for people to get sick and die.
In those cases, part of the solution may be in the disruption of profit for those who would leave us to perish. Although hopefully, joining with the like-minded from other conditions that have similar symptoms is what will help us make progress faster, especially as they have been down the same road before.
And again you cannot achieve either without organizing and activism.
And you can't organize effectively if you don't understand the principles of why your strategies must exploit the power we have, which is in numbers, as well as our ability to unite and disrupt business as usual. And to leverage the fact that our tax dollars, whether income tax, sales tax, or the hidden taxes we pay, can be used to fund the help we are seeking.
My proposed solution, which I have begun to work on already, is not to wait for them to come to us. Not just them, but all the people who may have one disabling condition and is beginning to wonder - what if I get sick?
What if my spouse falls ill and never gets well?
What if one of my children or parents needs an operation or a caretaker? How will I afford this?
Finding and educating the people we need to united with before they even stop masking has worked before in both disability advocacy and in other ignored widespread diseases that were initially politicized out of aid.
An example of the rom is the online disability unity that came to be from the "But You Don't Look Sick" website, before social media came to be.
As more people begin to realize that
- Long COVID is not uncommon,
- but recovery is,
- or 1 in 10 infections (not people) results in Long COVID according to the WHO,
- some infections are asymptomatic,
- every COVID infection can damage you,
- and the government simply decided COVID has come to an end,
or especially if it's it's new nickname of "airborne AIDS" (despite that not being quite right), a backlash will come.
I believe if we as a community are ahead of that, instead of trying to change the ideas of the part of the Long COVID community and/or mainstream culture which sees itself as separate from disabled people, they'll eventually have no choice but to come around.
With HIV, it too was ignored for a long time, because it was associated with a population that the mainstream culture was programmed to believe didn't matter.
Gay men were the "unwell anyway" of that time. By the time activists and recording artists were able to convince charities and governments that heterosexuals could also get the disease, it was out of control.
Instead of letting gay people die of AIDS or related infections in hospitals in poor neighborhoods with few resources that could not afford the medications that helped with treatment, eventually there was research.
And we got to the age of PreP where a person in love with an HIV positive person doesn't necessary get HIV, and even better, the person with HIV doesn't necessarily get AIDS, nor is AIDS an automatic death sentence anymore.
It took decades for that to happen.
At the rate COVID is spreading, we can't afford a disease that causes this much damage from even a single infection to run through the population. The next generation will be mostly disabled people and the system can't even handle the disabled people it has now.
Not to mention what happened in the aftermath of mass disabling events in the last century. Turns out it was directly tied to the rise of the Nazi party.
What will an economy that wants all the kids in their physical schools and all the workers at their physical jobs, do with a generation made up of a majority that cannot leave their homes or beds?
Where will the workers we need to enact any hopefully upcoming green legislation come from? How else will we remain on planet Earth? Even if the answer is robots, before they can build each other, they still have to be created first.
People under 25 talk about not growing middle aged or old because the planets weather extremes will no longer be survivable by then.
Even they understand- this problem has to be solved now.
There are probably other ways, and the other tactics I mention likely have their place. All the more reason to work on all of them, and any other we can think of, right away.