New Normal vs No Normal
The world has changed a lot since March 2020. The words “covid”, “pandemic”, “mask”, and “pod” are now part of our collective, everyday vernacular. While some might describe this as a “new normal”, others would argue that there is no normal. Once the pandemic is over, we can’t return to normal because, for many of us, normal has never worked.
I live with a learning disability in addition to a physical disability that causes partial blindness and drastically limits the fine motor skills in my right arm, hand, and leg. Although I am able to walk without the use of a mobility aid such as a wheelchair, there has never been a normal for me because, for example, I can’t drive a car, cut the fingernails on my left hand, and tasks such as cooking are extremely difficult and time-consuming. Normal has never worked for me, nor has it worked for many members of the disability community and other marginalized communities. There haven’t been many silver linings throughout this pandemic, but one I’m hopeful for is that Covid has laid the groundwork for a paradigm shift in how we work, take care of ourselves, and take care of each other.
As of August 2020, one million Americans with disabilities had lost their jobs since the previous March, and on November 12, 2020, I became one of them. That’s 1 in 5 of us, compared with 1 in 7 in the general population, according to the U.S. Bureau of Labor Statistics. To put this another way, between February 2020 and February 2021, the unemployment rate among people with disabilities had gone up 4.8%, compared with 2.7% among the nondisabled population. As we continue to deal with the persistent impacts of the pandemic, we need to resist the urge to frame our new lived experiences as any type of normal because, if there’s one thing Covid can teach all of us, it’s that ‘normal’ is subjective. Instead, we are collectively transitioning from the old, pre-Covid paradigm to a new one. Taking actions that foster greater accessibility and equity, some of which I lay out here, will help ease the transition to this new paradigm, particularly for working mothers and employees with disabilities.
Increasing Access in the Post Covid World
The Covid-19 pandemic brought to nondisabled people challenges that people with disabilities have faced for decades. Framing these challenges as any type of ‘normal’ belittles the challenges members of the disability community have collectively and individually faced for as long as we’ve existed. Those of us with disabilities and working parents, especially working mothers, generally share some unique challenges, but especially during this time. How can we increase access and equity for everyone in the Covid world and beyond? In order to inclusively improve people’s quality of life and make workplaces more equitable, inclusive, and accessible, we have to rethink the future of work. This includes increasing access to healthcare, other benefits, and technology; improving workplace and societal culture; and providing more flexibility in where and when work gets done, as well as specific support for working parents and people with disabilities.
While some larger tech companies, such as Salesforce and Microsoft, are establishing flexible remote work policies, and others, such as Quora and Basecamp, are going fully remote, this is only the beginning. To truly be inclusive, businesses need to think beyond the requirement of having employees be physically in an office with their coworkers. Employers need to work with employees to determine what improves productivity instead of implementing policies based on what they think increases productivity or supports their bottom line. Business perspectives must shift to account for and prioritize the needs of employees with disabilities, treating them as assets rather than impediments to a larger profit margin.
Beyond the workplace, restructuring the American healthcare system and how eligibility for disability benefits is determined will improve individuals’ productivity, health, and autonomy by improving quality of life. As someone living with a physical disability, the balance between my need for independence and my need for assistance from others has always been a delicate one. Home and Community Based Services (HCBS) are a great way to strike this balance because they promote and foster independence by allowing people with disabilities to receive the support we need in our own homes or communities rather than in an institutional setting such as a congregate living facility. Normally, people are required to receive long-term care services, like those covered by HCBS, in an institutional setting. HCBS, however, is provided via a waiver system, which allows individuals to apply to have the requirement “waived”. This waiver provides essential, medical and non-medical services such as cooking, cleaning, and assistance with personal hygiene. Because these Home and Community Based Services are administered via Medicaid, individuals must be Medicaid recipients in order to even be considered for an HCBS Waiver. In this way, Medicaid functions as a “gateway” to further services and supports. Tying these services to the currently restrictive Medicaid system perpetuates a poverty trap in which people with disabilities are incentivized to remain unemployed, underemployed, or “spend down” their income by “buying in” to Medicaid in order to retain these necessary services. One commonly held misconception people have about the costs of being cared for at home is that it’s more expensive than being cared for at a facility. This is not always the case, which is yet another reason to make access to the program easier.
In my twenties, I sought support from a local protection and advocacy agency in New York City, only to be told that in order to receive HCBS and support from the agency, I would need to be a recipient of what’s called ‘Straight Medicaid’, which is different than the Medicaid I was receiving at the time, and receive currently, through New York state’s health insurance marketplace, known as ‘Managed Care’ Medicaid. On top of that, I was also informed that in order to receive Straight Medicaid, I would have to buy into the program, as although my income was limited enough that I was qualified for Managed Care Medicaid, my total income and assets exceeded the threshold for qualifying for Straight Medicaid. After buying into the program for a brief time, I ultimately decided at the time that the support, although useful, wasn’t worth the ongoing restrictions to how much income I could earn and my ability to obtain gainful employment. Many other people with disabilities don’t have the relative luxury of being able to make the same choice that I did. This lays bare the difficult decision many people with disabilities have to make between financial independence and stability and other aspects of our wellbeing. In order to be truly inclusive, policymakers need to rethink how disability benefits eligibility is determined and increase the income and asset allowances.
Unfortunately, due to stringent and unrealistic Medicaid eligibility requirements, it is extremely difficult for anyone with a modest income to receive and maintain these services. If you are disabled or age 65 and older, you can’t have a net income more than $10,600 annually, or $884 per month in order to maintain your eligibility. This is even less than the threshold for nondisabled single people, which is $17,609 annually. The income limit for people with disabilities and older adults is particularly burdensome and egregious because it is even less than the federal poverty guideline of $12,880.
As they are now, the Medicaid eligibility rules are designed to keep the people who utilize these benefits in poverty. Just because a person’s income (or their spouse’s, or a dependent’s parent’s income) exceeds a certain number, that doesn’t mean that they are any more easily able to access resources that enable greater independence. Furthermore, health insurance must not be tied to employment, as the United States is the only developed, industrialized nation that doesn’t provide universal health coverage to its citizens. With 3.3 million Americans experiencing permanent job loss since April 2020 and over 500,000 deaths, both due to Covid, a new light is shone on the problems with the American healthcare system and why policymakers urgently and drastically need to rethink it.
In order to promote greater equity in the workplace, President Biden and Congress must also end the subminimum wage for workers with disabilities, which is ironically permissible due to a clause in the Fair Labor Standards Act of 1938, and increase the minimum wage to $15 per hour for everyone. If more people are earning more money for their work, they’re more likely to spend that money, which in turn, stimulates the economy.
People with disabilities often rely on family members or Personal Care Attendants (PCAs) for assistance with daily living activities. As frequent recipients of care, we have unique insights into the challenges that caregivers face. With an average salary of $25,365 in New York state, where I live, PCAs don’t get paid very much to do tedious, often labor-intensive, highly-skilled, and high liability work, including but not limited to performing physical and occupational therapies, managing medication regimens, knowing and understanding how to use adaptive equipment and how to implement life-saving techniques like CPR, as well as assisting clients with daily living tasks such as cleaning, meal prep, and grooming.
My mother often functioned as my unpaid PCA during childhood, juggling her demanding career as a doctor, responsibilities towards my siblings, and leaving work early to help me advocate at doctor’s appointments. Throughout the pandemic, many parents have been struggling with a similar balancing act and pondering such existential questions as, “How can I focus on this work meeting with my kid screaming in the background?” and “How can I be expected to educate my child when I have my own job to worry about?” The US government could do a lot more to support caregivers generally and mothers specifically who, to this day, do the bulk of caregiving in opposite-sex couples, even when they’re the primary earner in a working family.
Three recommendations I have for employers that would benefit working mothers and employees with disabilities by embracing the new paradigm as well as easing the transition to it, include:
1. Promote frequent check-ins and open communication.
Due to the way my disability manifests itself, I’m often told I don’t look disabled. Because of this, I’ve been subjected to other people’s inappropriate and incorrect expectations, even by my own family members. I’ve internalized these messages to mean that in order to be successful in any given situation, I should pretend I don’t live with a disability and that asking for help is unacceptable and may be met with resistance. This has contributed to my ongoing struggles with mental illness, including a lot of insecurity around my identity as a disabled person, which makes it difficult for me to advocate for myself as an adult. Encouraging frequent check-ins and open communication will help employees feel more comfortable stating their needs without fear of rejection or ridicule. Disabilities are so varied that two people with the same diagnosis may be affected differently; and one person’s needs may change depending on the hour, day, month, or year, varying as well with the context or situation they find themselves in. A person may or may not need more accommodations, but they may instead need different accommodations too.
Employers must accept this impermanence if we want to create equitable opportunities. We need to normalize empathy and humanity in both virtual and physical workplaces. We can’t rely on the disability community as the sole source of knowledge on ableism. That’s a lot of added pressure and responsibility when some of us struggle with anxiety disorders simply due to the necessity of surviving. Nondisabled individuals and companies alike need to take the initiative to proactively educate themselves on how to be better allies. We would also be mistaken to think of accommodations only as adjustments and customizations made to meet the needs of working people with disabilities. Accommodations not only benefit workers with disabilities, but also working mothers and others who juggle a job with taking care of a sick, disabled, and/or older family member or friend.
2. Allow employees to work on flexible schedules.
Along with parenting and paid work, mothers have taken on additional responsibilities as educators during the Covid-19 pandemic. Beyond the pandemic, people with disabilities have a variety of health issues to manage, requiring time-consuming doctor’s appointments, therapy sessions, or treatments that often occur during a ‘typical’ business day. The same goes for those with mental health needs, who may need to take more frequent, short breaks, for example. Life can be messy and unpredictable for relatively healthy people, so greater flexibility will ultimately benefit almost any working person. Allowing people to work on flexible schedules will help them to maximize their productivity, achieve a better balance between their personal and professional obligations, and, most importantly, generate a culture of care within the workplace. Members of the C-Suite must take into account the complexities of life by shifting away from the idea of fixed office hours and cultivating trust that employees will complete their work well and on time. As long as deadlines are met without sacrificing quality, it shouldn’t matter what time of day the work is done, anyway.
3. Promote digital access and inclusion.
Working in an office environment gives employees access to tools and other resources they need in order to do their jobs as effectively as possible. These tools are arguably even more important for workers with disabilities who may require assistive technology accommodations in order to perform their core job responsibilities. I, for instance, was extremely grateful when my former employer sent me a one-handed keyboard that allows me to type more efficiently by remapping the keys to one side of the keyboard at the press of a button. Companies may also have employees who, although they are paid at regular intervals, are not paid enough to afford all the things they need to perform their essential job functions in the home environment. Ensuring that employees, for example, have access to an adequately stable, reliable, and powerful internet connection by providing those who need it with a wifi signal booster is a simple way to ensure these employees are able to continue doing their jobs with minimal friction.
Easing, not restricting, access to government benefits and work accommodations will facilitate greater independence, autonomy, and productivity. People with disabilities and working mothers have long-shared commonalities that the Covid-19 pandemic has brought to the surface. Those of us with disabilities, specifically, have been requesting accommodations such as the ability to work from home for decades, only to have them dismissed as too burdensome or too risky. Only when nondisabled employees needed these same accommodations throughout the pandemic did employers honor them. It shouldn’t have taken a global pandemic for these needs to be provided. While it remains to be seen if and which of these accommodations will remain common in the workplace once the pandemic subsides, it would be a sign of good faith if business operators continue to embrace the new paradigm we’re living in. Employers and employees have to work and think collectively in order to reduce the pain points and friction caused by the sudden and drastic shift to a fully remote work life and a future that appears to be trending towards greater flexibility. This flexibility will be innately more equitable and inclusive, but that doesn’t mean there won’t be a learning curve for both employers and workers alike.