Pandemic in the DisCO
The disability community is profoundly resilient. As someone who has been disabled since infancy, I have seen this play out in my own life, among my friends with disabilities, our families, and the people who care for us countless times. In my lifetime, this need for resilience has never been as great as it has been in the last 2+ years of the Covid pandemic.
The McMahon side of my family has the fabled luck of the Irish. Undeniably, much of this is white privilege, but some of it is mystical Leprechaun stuff. In the pandemic the mystical part of this luck played out with timing. The end of 2018 and first half of 2019 I spent having unexpected hip surgeries that required stays in a skilled nursing facility, a lot of in-home care, and adjusting to life with a mobility scooter. If the pandemic had started a year earlier, I couldn’t have socially isolated. Not in skilled nursing, and certainly not in the several months when I was first home.
In those months, my one-bedroom apartment became a crossroads for physical therapists, nurses, and direct support professionals (DSPs). The nurses would check that I was physically okay, and the physical therapists kept me focused on regaining mobility. The DSPs were by far the most important to my overall wellbeing. They helped me shower for the weeks it took me to regain the strength to get in and out of the bathtub on my own. Acting as if this was the most normal thing in the world, one guy would discuss presidential biographies with me as I showered even though it meant he had to listen to my not so favorable opinions on Andrew Jackson for the rest of the day. DSPs helped me get in and out of my apartment until I was able to get a wheelchair ramp installed. This meant that I could get to medical appointments and run errands. One DSP even came with me to the fancy patio bar around the corner when I was desperate to sit outside eating french-fries and drinking a fussy cocktail just to feel like part of the world again for a moment. For me, DSPs helped with all of the human stuff that other medical professionals tend to be too specialized to bother with. After my surgeries, DSPs took care of everything I needed to feel like a person rather than a failed science experiment.
By the late winter of 2019 and early spring of 2020, I was finally hitting a stride that felt manageable on my own. I was steady enough to shower alone without being overly afraid of catastrophe, and I had a ramp installed on my two front steps so I could come and go whenever I wanted. I no longer needed in home care. To keep making progress I was swimming and doing pool exercises multiple times a week at the Easterseals heated therapy pool in Sacramento and working with a Pilates instructor once a week. After a stressful few years, with access to exercise and the capacity to get out of my apartment on my own, I was starting to feel at home in my body once more.
When everything shut down two thoughts punched me in the gut. First, relief that I was able to care for myself and terror and empathy for those who weren’t. Second, certainty that my degree of disability had leveled up overnight. The pool and Pilates studio were no longer safe.
My disability is a chronic autoimmune and inflammatory disorder. The inflammation is managed with a daily regiment of medications that shut my immune system down. Pre-pandemic I had joked more than once, when a friend noticed the collection of pill bottles on my kitchen table, that sadly none of them are any fun unless they want to throw a party where everyone goes home with a cold.
Without these medications my health deteriorates quickly. So in the first year of the pandemic, I did the only thing I could do. I stayed alone in my apartment doing the best I could to not lose any of the functional gains I had just barely begun to make. Doing the best I could to care for and connect with the people important to me from isolation. The beginning of the pandemic was what it was for so many of us. Lonely and terrifying, a year that more than any other seemed to be shoving us towards a bottomless pit of rage and nihilism.
People with disabilities deserve so much more than that bleak pit. The capacities and creativity of the disabled community are what pulled me through these last two years. Playing online video games with my autistic godson and his family brought joy. Weekly Zoom cocktails with friends with disabilities brought catharsis and understanding. Occasional birdwatching outings to various Sacramento valley middles-of-nowhere with other high-risk friends reminded me that the world will always be beautiful and full of surprise somewhere, even in 2020-2022.
As challenging as it has been for me, I know that the pandemic is far worse for other members of the disability community. My recovery from surgery stalled, but even so I can care for myself, I have access to technology to keep connected with friends and family, can afford to have groceries and whatever other things I need delivered, and can go out for long drives when the walls of my apartment feel entirely too close. This is not true for far too many in our community.
Resilience is a survival skill. It’s what you do when you have no other options. Resilience is making something out of nothing, having no resources and continuing to exist anyway. Resilience is a word that is never used to describe someone whose basic needs have all been met. Resilience is not voluntary, it’s compulsory. It’s exhausting.
Advocacy is the collaborative work of meeting basic needs and, ideally, creating options. During the pandemic when people with communication disabilities were being denied access to family members or staff necessary to their communication in hospitals, disability advocates quickly pushed for and got an exception, ensuring that this need could be met.
Now we are pushing for a living wage for the DSP’s essential to so many of our survival. I could not have lived on my own during my pre pandemic recovery without the support of these professionals. Every day they work to ensure that people with disabilities are safe and cared for in highly individualized and holistic ways. Carrying a chunk of the burden of resilience for each of their clients, and their clients’ families. Over the last two years I am sure that this already complicated job has become infinitely more challenging.
As a new board member with The Arc of California I aim to work towards a world so equitable that no one would think to use the word resilience when talking about the disability community. This work begins with improved wages to attract more people to the DSP’s profession and is limitless from then on. I look forward to collaborating with anyone who is reading this.