Creating a New Culture of Accommodation for Invisible Disabilities in a Post-Pandemic Era
As we collectively end our initial year-long response to the COVID-19 pandemic and begin to see hope for a slow return to forgotten routines, I find myself reflecting on the lessons learned, especially as it relates to workplace norms and practices. This time last year, in response to the spread of COVID-19 across the U.S., many office-based employers quickly shifted to partially or fully remote work for most or all of their employees, and many of us are still working in a virtual capacity. Through this process and with the assistance of modern technology, we have discovered that an incredible amount of this country’s labor and productivity is achievable through telework. As we begin to shift toward reopening physical offices and reintegrating employees to in-person work, we find ourselves in the perfect moment to look inward at business practices and to adapt to the needs of the changing workforce.
Although the Americans with Disabilities Act (ADA) was enacted in 1990, most people who are not directly affected by it are unaware of its intricacies or how it is implemented in places of employment. The law currently “requires an employer to provide reasonable accommodations to employees and job applicants with a disability, unless doing so would cause significant difficulty or expense for the employer,” referred to as an undue hardship. The ADA has provided much needed legal protections for disabled employees, but in many ways, it has also provided protections for employers who, due to some business circumstance (size, profit, etc.), are legally unable to accommodate a disabled employee. While individuals living with disabilities require varying methods of accommodation, seeing businesses of all types and sizes adjust to remote work during the pandemic begs the question – has the definition of undue hardship changed? And if not, will the option for telework as a reasonable accommodation request from an employee be fulfilled by employers after the pandemic, after a year of successfully adapting to telework and managing remote employees?
An Unfortunate New Normal
The impact of the last year truly cannot be understated. The vast and indiscriminate loss of life, loss of stability, and loss of sense of self is still incredibly palpable for so many of us. Many lost loved ones to COVID-19, and their pain is unimaginable. Even more of our neighbors, friends, co-workers, and family members contracted the virus but survived the immediate effects of the illness. At the time of writing this, more than 30 million Americans have contracted COVID-19, and close to 600,000 have lost their lives. Nearly 2.5 million Texans have contracted the virus since last year. How many of these individuals will now live with pre-existing conditions or suffer from an invisible disability?
The loved ones of those lost to COVID-19 are suffering indescribable grief and trauma. Many are anguishing at the thought of carrying on with their lives and routines, as if it’s expected, as if they will ever be able to fully heal and recover from something so devastating. Those who contracted COVID-19 but survived may be struggling with the grief and anxiety that comes with new or worsening diagnoses for medical conditions that may affect them for the rest of their lives. Many of these COVID survivors will face the uphill battle that exists for all people living with invisible disabilities, and the workplace is just one of many frontiers they may have to navigate differently because of that.
Living with an Invisible Disability
Having a disability means different things for different people, but there are also some common experiences. Living with an invisible disability often means suffering through recurring and profound periods of fatigue and/or pain. While trying to navigate all that comes with disease or impairment maintenance or strategies to prevent flares, people with disabilities are also navigating systems that impact their energy – doctors, tests, insurance companies, medical bills, and so much more. On bad days, living with an invisible disability, like a chronic medical condition, creates more fatigue than the body can compensate for. There is a famous analogy used to describe the experience of living in a body that is chronically ill called The Spoon Theory, created by Christine Miserandino. Her story illustrates how completing menial and simple tasks can be detrimentally draining for someone living with a chronic condition and how those who are healthy experience the privilege of not having to make choices about completing or putting off basic chores and tasks out of a need to preserve their energy and well-being. This story has resonated so greatly among people living with invisible disabilities that many refer to themselves as “spoonies.” Those who have contracted and survived COVID-19, especially so-called “long-haulers,” may now find themselves navigating life as a spoonie, with many of them suffering a wide range of physical and mental impairments as a result of the virus. This means there could be millions of newly diagnosed invisible disabilities in our country. How do we as a nation intend to respond to them and to the millions of Americans who were living with disabilities prior to the pandemic?
What We Can Learn from Survivors of Trauma
In addition to my passion for promoting awareness and belonging for people living with disabilities, I have also dedicated my career toward eradicating interpersonal violence, including domestic violence, child abuse, sexual assault, and human trafficking. There is a necessary parallel to be drawn between the conversation around systems and businesses adapting and accommodating persons with disabilities to doing the same for survivors of violent crime and trauma. In the anti-violence movement, there has been a much-needed shift toward integrating and elevating the voices of survivors, and those who are working within the field are often referred to as Survivor Leaders. Survivor Leaders often work as consultants or are employed by organizations and agencies engaged in anti-violence work, providing a much needed lived experience and expertise to the field.
Survivors of trauma face a similar yet unique journey as others living with disabilities. They are often suffering from symptoms of complex trauma, manifested as physical, reproductive, and mental impairments and illnesses. Additionally, many survivors live with temporary or permanent physical disabilities due to injuries sustained from the abuse they endured. Gender-based violence is so pervasive, the World Health Organization has declared it to be “a global problem of pandemic proportions.” In this context, survivors of violence are also survivors of a pandemic that will likely affect their health, possibly for the rest of their lives.
There are survivors everywhere who are trying to put the pieces of their life together while seeking or maintaining employment and navigating unnecessarily arduous systems like medical services and the criminal justice system. Imagine finding yourself in a position having endured unspeakable harm, with newly diagnosed disabilities, living in a cloud of fear and shame, and regularly interacting with systems that seem designed to re-traumatize and exhaust you, all while trying to be a “productive” employee. It’s an unimaginable experience, but one that unfortunately so many of our neighbors, friends, family, and colleagues are facing. Our society still does not have an appropriate grasp on how to respond and provide support to survivors, and employers are even less equipped to do so. Even those who employ or contract with Survivor Leaders find themselves unable or unwilling to adapt their work environment to the ongoing needs of someone recovering from the effects of trauma.
The irony is that the anti-violence movement is responsible for generating concepts like trauma-informed care and creating standards for ethically working with the survivors they serve in their organizations. These same organizations who create anti-violence programs or provide direct services to survivors are well equipped to adapt these services to meet the unique needs of survivors and often provide training to others on how to do so. But they fail to incorporate these same principles into their practices as employers, and their employees can suffer from extremely high levels of burnout and compassion fatigue.
A Moment of Reckoning
The armchair and performative activism of our culture saw a boom over the last year of protests against police brutality and widespread pandemic suffering. Companies across America, as well as influencers and individuals, all took turns making public commitments toward promoting racial equity or mandating safe working environments for their employees. As we think about the term intersectionality and how it is used in activist rhetoric today, I often think about the pervasive ableism our culture has yet to reckon with and how so desperately it belongs in the conversation alongside racism, sexism, classism, homophobia, transphobia, and xenophobia. In fact, it is inextricable from any of these other oppressions in the lived experience of the persons affected by it. So, how can we begin to tangibly address the impact of ableism on our society?
Too often, employers will provide the legal minimum standards they are mandated to comply with when it comes to offering reasonable accommodations for persons with disabilities. But as we have seen from the changes in work norms created by the pandemic, companies by and large are well equipped to make quick, vast, and sweeping adaptations when doing so benefits their interest. If your company was able to deploy and maintain completely remote work for an entire year for your employees, what justification will you have for denying this same type of accommodation to a qualified candidate or current employee who has a disability – whether visible or invisible, whether as a result of trauma or not? Under the newly released guidelines from the Equal Employment Opportunity Commission, employers are not required to continue to provide telework as a reasonable accommodation once in-person work has resumed. But my question remains, why wouldn’t you? What undue burden does it create for an employer to accommodate occasional or regular telework for an employee who is otherwise skilled and qualified for the job?
It is well past time that we decided to do more than the bare minimum to integrate and celebrate those with varying abilities and skills. It is imperative we realize that accommodating someone’s disability actually serves all parties involved – it expands the workforce, it creates work environments amenable to all types of people, and in the end, employers will benefit from the profit generated from the skills of diversely-abled persons. In fact, hiring those with lived experiences – like Survivor Leaders – brings immeasurable value to organizations and companies, and providing accommodations that reflect their circumstances actually helps better inform anti-violence programs. If your agency works on anti-violence programs or with survivors of violent crime, you likely already incorporate trauma-informed concepts and frameworks in your approach to the work, and adapting your internal policies related to hiring and retention of employees should be a natural extension of that existing practice. All employers can and should educate themselves about creating truly inclusive and equitable work environments that foster the success of diversely abled employees and teams.
As possibly millions of Americans face newly diagnosed disabilities as a result of surviving the pandemic – whether it be ongoing medical or mental health conditions – we are faced with an opportunity to demand a shifting of the norms. We are actively being presented the choice between creating a more fair, equitable, and just society or choosing to remain on course and maintaining the status quo. Persons with disabilities and survivors of trauma have been waiting far too long for our country to be ready to embrace and celebrate them. If the time for that is not now, when will it ever be?
Tiffany Lee is a freelance project manager and consultant currently based in Austin, TX and specializing in anti-violence programs, policy, and intervention strategies. She also has lived experience navigating various types of workplaces as a person with an invisible disability and is available for consultations.
