The world shut down on April 2, 2020, and I woke up.
As a disabled person, I have always known isolation. My community has always known isolation. When the world shut down during the pandemic, we found ourselves in our isolated existences, even more torn from the world. All who identified as part of the disabled community entered the state of utter fear. In contrast, those not identifying as disabled were now afraid of sickness and terrified of death, therefore being forced into identifying as disabled. Many of my friends who knew the freedom that they had worked so hard to establish found themselves back in the aging, ailing arms of now-elderly parents. Caregivers afraid of getting sick stopped showing up, and caregivers who refused to follow protocol and wear masks quit or were let go.
I was in lockdown with my best friend, dog, and cat, living in a 600-square-foot, inaccessible, and expensive apartment. With every PTA bath, dog spa hair wash, and story I heard through the grapevine or read on social media questioning the value of our disabled lives, the lives of seniors living with disabilities, or individuals with preexisting conditions, I asked myself over and over, “When will things change for the disabled and aging communities?”
Then I watched the Oscar-nominated documentary, “Crip Camp,” which focuses on the rise of the disability civil rights movement starting with a motley crew of disabled campers. Immediately, I was taken back to the years when my parents advocated for my rights and the rights of my siblings. I asked, “How can I make a change for my community?”
My parents were my first advocates. My mother, who had watched and remained haunted by the images shown in the 1972 Geraldo Rivera expose, “Willowbrook: The Last Great Disgrace,” acknowledged that one or even all three of her disabled children could have found themselves in the same situation. She lived in unrelenting fear and anxiety that her children could be at any given point institutionalized, never knowing self-sovereignty. My mother and father had to fight for everything we had, and they taught us how to fight in turn.
As I grew older, I began to hide from my disability under blooms of cigarette smoke, strange hair dye, eclectic clothes, and an angsty adolescent attitude in the hopes of fitting in with my peers. Art has always been my safe space, a way to flourish and figure out life at my own pace and on my terms. I used my creative abilities to make a name for myself and carve out the life I wanted, but when my siblings passed, I pulled back further from my community, thinking only of myself and my pain. To see others with disabilities alive, surviving, and in some cases even thriving in the face of adversity hurt my heart. My siblings should’ve been there with me. My siblings should still be alive.
I then witnessed what happened to my community during the pandemic. It made me realize what a lonely, selfish, and, yes, even entitled disabled existence I was living.
I did not seek to become an activist and advocate for my community. I’ve always wanted to simply be an artist, but activism and advocacy found me and perhaps saved me from being a person I didn’t want to be. My disability has constantly robbed me of my physical ability. However, I still have my voice, and it is my voice that I use to carve out a new pathway for my community while also keeping the memory of my siblings and others who have passed alive. With this, I employ the help of all communities to make a change for the disabled and aging communities before we are lost to hate and a system that robs us of autonomy and what remains of our abilities.
As an individual living with a degenerative disability, I have always needed people to assist me with accessing life. When I was younger, I was far more independent. In a healthy body, age pulls from its abilities, but in my disabled body, it pulls faster. I’ve gone from crawling to walking to crawling to sitting and, now, being stationary with only my mind, my voice, and a few fingers to paint the world I want my friends, family, and community to live in. My drawings have gone from life size to stamp size. But still, I create.
During the pandemic, I was fortunate to have my best friend take care of me. After the pandemic and my separation from my best friend, I relearned just how brutal the care system actually is for people needing care and, moreover, for those wanting to care for people in need.
Since August 2021, I have had 11 caregivers. Some were friends who decided to care for me, and some were strangers who I taught to care for me. All of them left. I have been reminded of past trauma due to my care: being robbed, being threatened with assault and murder, being left in my urine, being left hungry, and simply being left. I have brought new traumas to my care: the omission of low pay and the building of resentment from caregivers, acknowledging my hands are tied, experiencing the withholding of care, advocating for higher pay for caregivers who are my arms and legs, knowing the only way I will get more money for my care and their pay is if I get weaker and close to death.
As children, we’re taught from the same script. We are told that if we do well in school, go to college, and get a career, we will be successful. We can achieve our dreams. But once we’ve left the umbrella of safety that public school provides, all those in my community know the pathway to success is not readily accessible. Creating our pathway can leave people asking, “Why do we need help?” We live in a world that is able-body friendly. Though people watching online or in my life want to place my existence as an isolated incident, it is only a microcosm of what’s happening on a greater scale within my community: a lack of care for people in need. Caregiving is a grossly underpaid demographic.
The disabled community is a patient community built on watching, waiting, and hoping. But as time passes and we watch nothing be done and continue to wait and hope for change, our patience grows thin. All change begins with the ability to have a conversation about what needs to be changed. By sharing all our stories and accommodating our access needs, you, in effect, become an ally and a co-conspirator in recreating a life you will one day have to live.
Statistically speaking, there is about a 33 percent chance of becoming disabled before the age of 40, and this chance increases with age. More than 375,000 people become disabled each year, and 90 percent of disabilities in the U.S. are due to illness. To the “for now” nondisabled community, ask yourselves:
“Am I privileged enough to not have to worry about what will happen if I become disabled?”
“Who will take care of me if I have no benefits or when the benefits run out?”
“Who will take care of me if I have no family around?”
“What will institutional life look like for me?”
“Is my life still of value if I am disabled?”
If you are a practitioner of true social empathy, then asking these questions should cause one of two, if not both, effects: your lungs will feel robbed of breath, and your throat will tighten as if you swallowed your own heart with spoonfuls of pride. Being able to hold on to those honest and raw emotions is fodder for the fire needed to burn down toxic infrastructures, quiet the words, and slow the progress of those who actively and effectively hinder the advancement of an entire community that continues to go unrecognized every day, whose stories go unheard, whose faces go unseen, whose needs go unmet, and whose lives are never truly lived by their design. One day, soon enough, your face will join our crowd.
While waiting for the ramp to the stage to be built, I’m taking the fucking microphone and I’m screaming to the world. Our stories will be your stories, and we all will inevitably need help. With the announcement of our new president merely days away, your vote matters to our voices, and your ability to be heard as your future self. If Donald Trump takes the presidency and enacts Project 2025 people with disabilities or those who become disabled will live in perpetual peril. Project 2025 plans to eliminate the rights of and protection for students with disabilities, ratify major cuts to key healthcare coverage programs and services, create even more barriers to employment for disabled workers, restrict disability and other social benefits programs, and reduce enforcement of the Americans with Disability Act. Effectively, our civil liberties that we received only 34 years, 2 months and 3 days ago will be stripped away from us. But, still, as I lay here wide awake at 6:05am I promise we make every moment of our lives count for something, bearing witness or not. Whether it be lifting our fork to feed our mouths on our own, achieving high grades in the classroom while still being referred to as an R word (which Donald Trump seems to enjoy using more than women and the working class), or navigating terrain meant to exclude us from participating in our everyday lives, or living in poverty while feeling like a burden because we chose to marry the person that we love.
We make every single moment count. We are awake and waiting for our needs as a community not to exist in jeopardy, but to live in permanence. We are awake and waiting for the world to acknowledge and accept their impending future of living a disabled life. Together we need to work to change the landscape of our future. We all need to be awake and no longer waiting, but working to change our futures.