Written Story by A. Smith

Creativity for Equal Access

Because of the pandemic, we currently live in a world where immunocompromised and other disabled and high-risk people don’t have equal access to society. 

Somehow, we’ve rewound and rewritten the last 50 years of disability history, protest, and legislation. 

COVID is still here, and everyone is still being impacted by it in many different ways, even when that isn’t always acknowledged. It especially now feels so present for immunocompromised and other high-risk people, because the societal and governmental desire to “move on” has left many vulnerable people behind. When even a visit to the doctor’s office now provides an increased risk of severe illness or death for more vulnerable people because masking is no longer being used for infection control, higher-risk people face a much harder time trying to protect themselves. I find it so immensely difficult and burdening to try to protect myself, and this burden has expanded a lot because we’ve as a society largely stopped trying. 

Instead of trying to reduce exposure, we’ve stopped counting cases. 

Instead of the most simple act of care – wearing a high-quality mask when sharing spaces with others indoors, because COVID spreads the air – we often refuse to do so, choosing instead to leave large numbers of people out of society instead of doing something we find slightly less convenient that would allow for other people to access public spaces. 

And with each of these things, the world becomes less and less safe for vulnerable people.

What the world is missing is creativity. Many disabled people have learned how to be innovative and creative in order to reshape the world to match their needs. My disabled parents taught me this from a young age – to change according to the circumstances; that a life well lived includes creativity to address what you experience. I have learned this even more as an immunocompromised, mainly bedbound adult. Adapting things, being creative, you can not only make things work, you can make them work well.

The world was so much more equal in access for many disabled people starting at the beginning of the pandemic (a pandemic that is not yet over). Suddenly, I could watch a favorite performer’s concert online or tune in to an opera or join in other virtual opportunities. Although I can no longer work so it did not personally affect me, many people were now allowed to work remotely – something which I had been denied by a job years earlier (“If you’re well enough to work from home, you’re well enough to come to work” is what HR told me). The world became more accessible in 2020, because everyone needed accessibility. 

But over the last couple years, the world has become less accessible again. Most food places have stopped offering curbside options, even though immunocompromised people can’t safely go into spaces where there are a lot of unmasked people. The world largely stopped the online performances, the virtual conferences, the accessible options disabled people for years had advocated for. Instead of keeping a more accessible infrastructure, we have dismantled it in our attempts to claim some semblance of “normal”. But nothing is “normal” yet, and normal cannot and should not include inaccessibility. 

Indeed, we’ve retreated in our accessibility even further than where we were before the pandemic started. We’ve gotten rid of mask requirements that allow immunocompromised and other more vulnerable people to more safely access areas of society such as the store, doctor’s offices, and public events. This creates a culture where higher-risk people have to risk getting a virus that can cause severe illness or death to access public spaces. As disabled advocates teach, public accommodations belong to every person; they do not only belong to people who consider themselves at less risk. And yet, societally we are currently ignoring the equal rights of higher-risk people and see it as okay, because we want to avoid physical reminders, such as masks, of the traumas we’ve experienced and continue to experience. 

We’ve largely ignored that in the last year, two of our main tools – monoclonal antibodies and the preventative treatment Evusheld – no longer work because of how COVID’s evolved. Many people often act as though higher-risk people need to just get on with it and stop taking precautions, even though a lot of COVID remains in our communities and the CDC still tells immunocompromised people to avoid crowded and not well ventilated spaces and to mask and stay away from others if they have to go into such spaces. The World Health Organization often reminds people of the dangers of Long COVID and how many people are still passing away from COVID. Meanwhile, many act as though “life goes on,” but this is with the loss of so many people and of other people continuing to be excluded, and that affects the world in many different ways.  

We need to be better, and we need to be creative. If we’re creative, we can reduce COVID transmission and ensure that disabled people have equal access to society. 

Society as a whole ran from staying at home the moment that they could, even though the early days of staying home were largely the same as my every day experiences as a mainly bedbound person. It’s hard to think about your everyday experience being something that others can’t wait to move away from. But I’ve learned how to adapt, be creative, live my life in a way that meets my needs and is beautiful. Disabled people have tried to share this knowledge with the world over the past three years, and the world has largely ignored this in favor of the “normal” that we wish we could go back to. 

However, we as a society could improve so much by building back creatively, innovatively, accessibly. This can include simple things like wearing masks in public spaces, requiring masks in healthcare settings, and improving ventilation. It’s not too late for us to create a more accessible society and ensure equal access to all members of society, all of whom have an equal right to public spaces. We just have to be creative.