We first began hearing of a deadly virus designated Covid-19 back in late January and early February of 2020. I need to remind myself of that fact. Everyone I talk to about the virus that resulted in a global pandemic will say something like, “It feels like two weeks ago or two months ago rather than two years,” or “It feels like five years ago rather than two years.” Like a person who experiences an accident resulting in a traumatic head injury, after they “come to” are asked what day it is, what year we’re in, and who is the President in order to make an assessment of their orientation to time and place. A tragic crisis like the pandemic will do that to us — make us lose a sense of time and place, the structures of our lives that orient us thrown into chaos by the pandemic.
Entering a new year anniversary of the Covid-19 pandemic, many of us are taking stock of our lives, asking where we are at and what life looks like now with the reality of Covid-19 as a part of it. The loss of lives due to the pandemic is beyond our comprehension. While still in chaos about the best preventive practices for spreading and contracting the virus and it’s ongoing variants, when and where to wear masks and receive vaccinations, we are literally and metaphorically waking up, shaking our heads, and asking, “What time is it?” “What year are we in.” “What are my losses?” “What has changed?” “How will we recover?” “How will we live our lives now, and what does our future look like?”
I recently interviewed and asked some of these same questions of a few mothers, members of a group of parents, caregivers, and family members of teenaged or adult children living with disabilities. It’s a group that I am a member of, my own thirty six year old daughter, Temma, lives with multiple and profound disabilities and the associated medical risks. For Temma, the pandemic has actually meant some positive changes. Her care team — made up of me, her father, and our friend who is Temma’s caregiver — all of us have been much more close-by and at-home with Temma, able to make the needed changes to work from home and care for her. Temma has not been out and about to catch other germs and viruses, so she has remained free from colds and flu that once contracted can be so devastating and long-lasting for her. Needed doctor’s visits have switched to tele-health appointments. Her body — muscles stiff with spasticity, curvature of her spine, and bones out of joint, at times wracked by a seizure that breaks through the medications — has been more at rest without the trips out and with all her caregivers staying in. Yet, the negative side to all this is that her world has become more confined and limited. Like any one of us who lives with increased fear, stress, and anxiety, there is a toll on Temma’s emotional and physical well-being and quality of life. But is there an even greater cost?
The mothers I interviewed, whose teenage or adult children live with a range of developmental disabilities and high-risk medical issues both physical and psychological, describe the effects on their children of being isolated, kept from attending school, from seeing grandparents, other family, friends, or caregivers, many of their daily routines abruptly stopped and even dropped long-term because of the lack of staffing or the loss of funding due to the pandemic.
“The pandemic and resulting lockdown hit just at the time of my twenty-three-year-old son’s last couple months in the school system. We were right in the time of strategizing for his transition from school to what comes next. The pandemic took away his future,” said one mom. “My son refuses to return to his day program. His care team has disbanded because of retirement, illness, or leaving for a different job due to the pandemic,” said another. “His obsessive-compulsive disorder is through the roof and he has gained a lot of weight due to routine and structured activities no longer available.”
“I needed to quit my own employment and career to take care of my son. His co-diagnosis of anxiety with autism made it difficult for our entire family. As his mother I want to help him prepare for the future, but what will the future look like? There are too many unknowns. Life is too unpredictable now.”
“My seventeen-year-old daughter did so well with virtual learning during the pandemic. She did not need to miss so many days of school due to her many medical needs. Now that her school is going back to in-person learning, it’s as if they have turned on her and on us, becoming adversarial rather than collaborative. The administration told us at the beginning of the school year that she should just take a year off. Now they are not going to give her credit for the on-line classes she completed during this semester. They have an attorney and now we have needed to hire an attorney too. I know it will be a long fight.”
Throw a global pandemic crisis at an already beleaguered and dysfunctional school system, limited community-based housing and other support services, limited health-care, poorly paid aides, caregivers, special-education teachers, and health-care workers, and you get crisis on top of crisis, stressing out already fragile gains in accessibility, fair and equal rights for persons with disabilities. Forced isolation of persons who are, because of ableism and discrimination, already marginalized and socially isolated results in even higher anxiety and loneliness, more harmful behaviors, and, in some cases, death. “In many cases state and federal legislation did not provide for the special needs of our children and the legislation that was in place was not set up for our children’s different needs in mind.”
“Are you awake?” “What time is it?” “What year are we in?”
“We have to fight.” “We need your voice to raise awareness so the extended isolation and separation are never permitted to occur again.” “We need to fight for legislation that includes plans for special education needs when a crisis such as this happens again.” These are the voices of the moms, the caregivers of our adult children. Before the pandemic nearly a million people were already on long waiting lists for support and housing options. Now the availability for home and community-based services is scarce and even non-existent. The push to return schools to primarily in-person learning and to drop the mask mandates leaves out of consideration persons with high-risk medical issues.
The future is indeed uncertain for these moms and their children. In an article from The Center For American Progress based on data from the Bureau of Labor Statistics, “In 2021, 1.2 million more people were identified as having a disability than in 2020.” There is a clear indication that this increase in persons with disabilities is not only due to an aging society but rather to the long consequences of Covid-19. The barriers to entering and remaining in the workforce are complex for disabled people. Access to health-care and other supports are difficult to find and maintain.
“Wake up!” “Can you hear me?” “What is the date?” “What year are we living in?”
We’re entering the third year of keeping Temma at home. That means two full years you’ve not seen her or any of “our kids” out and about. You’ve missed seeing Temma being pushed in her wheelchair by one of us, simply going out for a walk in the neighborhood, visiting our local Starbucks, or tooling around the park or at the mall. You’ve not seen Henry at the recreation center, or Nathan at summer camp or the grocery store. You’ve missed Erin at her school surrounded by a group of friends. Some of you may breathe a sigh of relief. A few of you would rather not have to subject yourselves to seeing someone as strange or different-looking as my kid, or need to spend your hard-earned tax money on people such as our kids, the “others” who should be at home or institutionalized somewhere outside of our community. But at what cost to you and our culture, the life and the soul of our society? “We are all in this together” was a popular slogan often used at the beginning of the pandemic. Often, I would wonder when I heard someone say that or when I would hear it over the speaker system at my local grocery store, “Who is a part of the all in that slogan?” “Whose bodies are we listening to?” I wonder, when our schools and universities demand that all teachers and professors along with all students be back in the classroom? When the mask-mandate is dropped, who is left out? Who is hurt when the health-care workers who were labeled as “heroes” at the beginning of the pandemic are now leaving the profession because they are underpaid and overworked? Who is unable to receive quality health-care because of their disability or because they need Medicaid?
The effects of the pandemic on the entire world are far-reaching and long lasting. We, the mothers of adults with developmental disabilities, know that social change is long and hard work. The push to bring things back to normal will leave out so many who help us push the boundaries of “normal.” We are good at building networks, advocating for alliances, and demanding support and equality for our kids. We know that our family members are a part of the all, and when they’re not, then we all suffer. We know the collaboration needed to make strong and lasting social change. We are all in this together.
“What time is it?” “What year are we in?”
It’s a time of change and upheaval as we take stock of where we’re at. Now our world enters another war that will, rather than solve any problem, only result in thousands more traumatized and disabled, left behind as collateral damage in the rush for power. As we slowly arise out of the depths of the Covid-19 pandemic blinking our eyes and shaking our heads, please, do not forget the voices, the bodies, the collective disability community, now grown so much larger, the community of our kids, the people living with disabilities on whom we depend and who depend on us to make our world whole.