Holding onto the Light Amidst a Pandemic

As a pandemic grips the globe, I’m trying to maintain as much normalcy and calm in my life as possible, which means I’ve come back to the things that bring me the most peace, and that includes writing. I never thought I would live during a pandemic like the ones I read about in history books, but here we are. We can’t change the situation we are in right now, but we can try our best to make it as bearable as possible for ourselves and each other. So all that being said, I’m offering you some of my major thoughts on COVID 19, and I will probably expand them into their own essays in the coming weeks as time and spoons allow.

What COVID--19 has Taught Me About Accessibility and Accommodations:

 Perhaps my first and most visceral realization in the wake of the pandemic comes around the issue of accessibility, and specifically our willingness and ability to make accommodations. Within days of the pandemic beginning I saw companies, schools, organizations and even individuals making accommodations such as allowing people to work from home, or join meetings or classes virtually. These are accommodations that disabled people have been asking for for years, and have routinely been denied, or told it's just not feasible.

The reality is, it's always been feasible especially in our modern world, but the drive to do it wasn't there. Disabled people's needs were not enough to convince people to make these accommodations. Too often the needs of disabled people are seen as "special" or "extra" and what we can bring to the table is overlooked in favor of the changes that nondisabled people would be required to make. We are seeing now what disabled people have always known. Accommodations are not that hard if you're willing to think outside the box. If you want to make accommodations, you can do it, and I hope if one thing stays with us after this pandemic is over, it's an acknowledgment that we can make a room for different ways of working, socially interacting, and attending school. It will make our world a richer, more diverse, and more accessible place for everyone.

Some Thoughts on Isolating, Quarantining, and Social Distancing When You Need Support to Survive:

As I’m writing this, I have been self quarantined in my apartment for over a week, as much as a physically disabled girl can.  You see, I’m trying to follow the rules, and definitely trying to reduce my risk, because I know my disabilities put me in the higher risk category, but I can’t survive without the help of others. I haven’t left my apartment in over a week, but even still, I must have contact with about three people a day. Those people are my PCAs who help me with my basic needs. I’m so grateful to them for taking the precautions necessary, yet still showing up and doing the work I need them to do so I can survive. Isolating, quarantining, and social distancing are all really important, but we have to be realistic and think about what pandemic looks like for people who cannot completely isolate, or even completely social distance.

Even in a Pandemic, Nobody Should be Considered Expendable, or "an Understandable Loss":

This part is really hard for me to write, but I think it’s so important, so I’m going to try my best. As we think about pandemic, a lot of people are talking about the inevitability that some people will die. While it’s true that we will lose people to this virus, I think it’s really important that we never consider one group of people an acceptable or inevitable loss. As we worry about the capacity of the medical systems, I hear people saying that certain people are not going to be able to get treatment, and they’re usually talking about people like me. In this time of pandemic, disabled people, whose lives are already devalued on a regular basis, are being considered disposable, and that’s not okay.

I’m a person.

I have passions, family, loves, aspirations, and a life I want to live just like you.

Just like anyone else, I deserve to be given the best shot I possibly can to survive this pandemic, and my disability shouldn’t make me expendable.

This is why it’s so important to flatten the curve. We can survive this if we work together and support each other, instead of thinking about who should die and who should live.

Do not write whole groups of people off as less worthy of life and survival because they are different than you. Remember, that we are somebody’s parent, child, sibling, lover, best friend, etc.

We are people.

We love and are loved.

We dream and we create.

We have messy and complicated and beautiful lives, and we make this world a better place, just like you.

I will do everything in my power to give you your best shot of surviving, all I’m asking is that you extend me the same courtesy and compassion.

The Inevitability of Time, and the Importance of Holding onto the Light:

When COVID 19 took hold, and I had to isolate myself from the world, for a minute, it felt like my life was on hold. It felt like time stopped, but then March 15 came, and I remembered that time doesn’t stop for anything, even a pandemic. For me, this reminder came in the form of grief, at the five year anniversary of the death of someone I loved very much.

 In that moment as I remembered him, I was hit with immeasurable grief and immeasurable joy all at the same time. I thought of all the things he had missed in the last five years, as his life was cut way too short, but I also thought of all the experiences that I have had, as I've been blessed with the opportunity to keep living, breathing, and growing each day.

 I realized I'm still here, and I have a responsibility to keep living, keep growing, and keep fighting, pandemic and all.

I think it’s important to remember that as this virus unfolds time will go on. Life will keep happening, even if it looks different than it did a week ago. Time doesn’t stop. We don’t stop loving, grieving, wanting, or needing. In all this, we are still human, and when it feels like darkness is all around us, the greatest thing we can do is refuse to give in, and to hold onto the light.

In this time, I encourage you to hold onto the things that bring you joy and bring you life. Having virtual dates with friends and lovers.  Still posting selfies and challenging standards of beauty. Pursuing your passions or getting back to the things you once loved that you lost time for.

In this time of distance and uncertainty, I challenge you to be alive.

Don’t let a pandemic rob you of your humanity.

Hold on to the light and treat others with compassion. Remember that we are all in this together, and together we can prevail. Hold onto the light, find your joy and don’t let it go.

As for me, in my effort to maintain normalcy and light, I will still be here doing my makeup, posting selfies, challenging the patriarchy, smashing standards of beauty, living and loving and finding joy wherever I can, and trying to write about it all.

Through it all, I’ll still be here, I’ll still be me because that’s all I can do.

Image description: black text on a white background reads, "the greatest thing we can do when it feels like darkness is all around us is hold onto the light. The quote is attributed to Karin Hitselberger. In the bottom corner of the image is a web address: www.claimingcrip.com