Hi, my name is Meishy and I live at home with my mom, Cheryl. She is helping me write this because I am a quadriplegic and unable to write and dysarthric and unable to speak. However, I want to tell you about my experiences of surviving in the world of Covid 19. I know all of you are having to survive this as well, but I am on a ventilator 24 hours a day, so if I get this virus, I have a 99% chance of dying, so that is scary to me. I want to tell you about all the things people have done to try to protect me and keep me safe so you know what people can do to help keep you safe too.
I have not left my room since February 18 of last year when I went to see Dr. Tolley at the pain clinic at Riley Hospital. That was right before Covid burst on the scene. In March I was told by my doctors that I needed to stay in my house and not leave for any reason; that my mom, who is a nurse, and my nurses would need to take care of any problems at home. The doctors made sure that I had all the medications that I needed (antibiotics, meds to thin my mucus, etc.) were on hand so they could be started if I needed them so I did not have to make a trip to the emergency room. I am a palliative care patient because I no longer have any veins that are good enough for IVs, so all my antibiotics must go through my stomach tube. I have needed these medications a couple of times during my isolation period, and it has been wonderful to not have to go to the hospital to get them. My doctors have also been great about doing all my doctor visits via virtual visits. Mom holds the phone up and we talk with the doctor about what has been happening with me and we are able to do our appointments that way. It has been amazingly effective. Another important thing is that the only people that I have seen since I left the house are my mom, my two nurses, Steve and Shannon, my therapist Jaime, and my aunt Susan. All of them do things like wearing masks and gloves when they get close to me if they are not feeling well. Mom even had to take care of me in November when she had Covid and managed to keep me from getting sick. She wore her mask, her gloves, and washed her hands a lot. She also kept herself in the other room except when I needed something bad, just so she could keep me safe. I did not get sick at all. I cannot say it has not been a little lonely, but I have my iPad and my DVDs to keep me busy and happy. Those are the things that I really enjoy. I plan to keep on doing what I am doing for as long as I need to do it, and I hope you will all do the same. Please remember that masks and social distancing do work. I am proof of that and stay safe.
Woman with brown skin and long black hair, wearing a pink dress with a fierce look on her face.
About the Author:
Meishy was born in Philadelphia and lived in a foster home there until she met her adoptive mom. They flew home to be a family on 9/20/2001, right after the planes started again. Meishy attended Shelbyville High School. She loves all things Disney, but especially the princesses. She spends her days watching movies and surfing the internet.
(Please Note: The author wrote this piece before the roll-out of the COVID-19 vaccines.)
I never thought of the phrase “may you live in interesting times” as a challenge until recently. But after the last few years and especially 2020, it’s starting to feel at the very least like a challenge if not an outright threat. I’m only thirty, but I am so tired of living in interesting times. I’m also disabled, and historically speaking interesting can generally be defined as ableist to one degree or another. The past few years are no exception, and this last year reached levels of ableism that repeatedly enraged and terrified me. I’ve been disabled for three decades, my entire life. I’m no stranger to discrimination, hatred even, on the basis of a person’s disability. But the absolute disregard for the lives of disabled people I’ve witnessed in the last year is on a whole other level than anything else I’d personally encountered. The worst part is it stems from a complete lack of empathy and an almost prideful ignorance of the disabled community.
People have talked a lot in the last year about what they’ll do “after quarantine is over”, or compared their day-to-day to what it was like before the pandemic started. It took me a while, but I finally realized why conversations like that bothered me. For those people being separated from others, unable to go places, feeling secluded all started with social distancing at the beginning of the year. But for me, and many other disabled people, quarantine life hasn’t differed much from daily life before COVID-19.
Disabled people already live largely secluded lives. So much of society is inaccessible to us. Transportation is either non-existent or difficult to arrange. Most public buildings still aren’t fully accessible, the same is true for most homes.
Beyond accessibility, there is the issue of not having people to connect with in the first place. Family and social circles often shrink or in some cases dissolve completely if non disabled loved ones decide a person’s disability makes them too difficult to deal with. In other cases disabled people may cut ties with harmful people if the relationship has become toxic and they are able to leave.
For these and a myriad of other reasons the daily lives of disabled people resembled life in quarantine long before social distancing became the norm. Personally my reasons for being largely homebound, aside from a lack of accessible transportation, had to do with dealing with poor physical and mental health, both of which had markedly improved before the pandemic. But both before the pandemic, and even now to an extent, there have been people I’ve been able to rely on for help when I needed it.
I recognize the privilege of my situation in saying that. So many disabled people don’t have in-person support, forcing them to find other ways to meet their needs and build relationships. The internet is often a vital tool for accomplishing both. Online, disabled people can find other people who can relate to their experiences; they form relationships, friend groups, whole communities. This has been true for me as well, even more so in the last few years. The people I’ve met online are a lifeline that’s become vital to me.
Another literal lifesaver for myself and others is the ability to shop online, order food, set up delivery of medications or other supplies and engage in other necessary communication. Quarantine saw the use of these and other tools and services boom as non disabled people also took advantage of them. Then there was the sudden availability of work-from-home, online learning and telehealth, all allowing the world to, hypothetically, become more accessible to disabled people than it had been before. In a time when society was experiencing en mass how solitary the disabled existence could be, the world became a little more open to us.
I say a little more, because even with mask mandates and stay at home orders, too many people decided to risk their lives and the lives of others by refusing to take the proper precautions. From the beginning, politicians and journalists alike repeated the damming line “only the vulnerable are at risk”. Too many people decided that didn’t mean them, so they didn’t care. This endangered those who should have been protected by virtue of their living situation. Yet COVID-19 cases in long-term care facilities account for nearly half the reported deaths.
Now with the vaccine being distributed there’s even more talk of “when things get back to normal”. No one seems to realize the “normal” they’re talking about is most likely lost. Oh sure some things will go back to the way they were, but it will be to disabled people’s detriment. Telehealth is already being phased back out. It wouldn’t surprise me if work-from-home and online learning opportunities disappeared as well. The opportunities that could have been open to disabled people will vanish like they never existed.
This is how society seems to work. Regardless of the work of the disabled community to fight for our rights and equity, we are always the second thought, “other”, expected loss. In this way disabled people are more easily forgotten about, out of sight out of mind. Turns out marginalization is a pretty effective practice to guarantee social distance.
I recognize how bitter and jaded I’m coming across saying all this. Let me assure you I’m less angry than I sound. Mostly I think I’m afraid. I’m afraid that what progress we’ve made might be all there ever is, and that all of it could be stripped away. Even more, I’m afraid no one else cares.
We’re facing possibly the largest disabling event in recent history and it seems we haven’t grasped the implications of this as a collective yet. People have already been permanently disabled by COVID-19 and guaranteed there will be scores more. The long-term effects are still largely unknown. We don’t have the infrastructure or other resources to support the current disabled community, let alone the influx of newly disabled people we’re about to see. This will leave people in deeper need of aid and more secluded from that aid than ever before.
The disabled community is one of the most resilient, supportive and dynamic I’ve ever been a part of. The accomplishments of my disabled peers is continuously a source of joy and pride for me. But I worry about our ability to cope with the magnitude of the loss our community has sustained from COVID-19 and the knowledge that so many considered that loss acceptable in exchange for returning to their “normal”.
Simply put, we were told from the beginning to maintain social distance, so I will. I won’t go away completely, and I refuse to be silent. But putting distance between myself and people bent on doing me harm feels like the best tool for self-preservation I have, at least for now.
I’ve been wondering if the answer isn’t staring me right in the face. The best way to cope post-COVID-19 may be to continue with safety procedures. For instance, no gatherings of large groups of people, especially any who were ok with sacrificing me and others like me. When out in public, wear a mask of calm and collectedness to hide simmering rage at ableists I encounter. And most importantly, staying a minimum of six feet away from t? said ableists to lessen the likelihood of arguments that could escalate.
Syd Chasteen
Name: Syd Chasteen
Bio: I am a queer disability justice activist born, raised and living in southern Indiana. I am a 30 year old, full-time wheelchair user with Spina Bifida and Hydrocephalus, and self diagnosed Autistic. I am a graduate of Ball State University and I’ve been married for 6 years. I started my blog, BifInMediasRes.com as a way to share my experiences as a disabled person. As an advocate for both myself and the wider disabled community I am always looking for ways to improve my advocacy and connect with others in the community.
