People with chronic pain know that familiar feeling of dread that happens during a period of particularly heightened pain, typically referred to as a “flare-up.” Flare-ups are destabilizing parts of our already destabilizing illnesses. They make it so that everyday tasks that we may not typically worry about are now even more time-consuming and sometimes simply impossible to reach. It can even be difficult to wash my face during most of my flare-ups. The repetitive motion of rubbing soap over my pores can end in tears because the nerves connected to my shoulder get upset. On my worst days, I have to crawl to get to the bathroom, and I’ll lay in bed for hours wondering if I can even make it. 

During my flare-ups, I can barely do the daily tasks I need to function, but I also am unable to take time off of work. This is because I work in the nonprofit sector, the home of the typically underpaid and overworked employee. While we rarely see movement wins, people who work within the nonprofit industrial complex usually do this work because we have a passion for helping our communities. The same passion for helping our neighbors is rarely extended to us as employees, which is why nonprofits are often rife with serious union-busting efforts. Nonprofit management typically talks about extending grace, compassion, and services to the most marginalized of people yet fails to understand that their staff are often members of the communities they serve. 

Most nonprofit jobs do not offer their employees unlimited paid time off (PTO), which can be life-saving for disabled employees. As a trans person hoping to have top surgery this year, I have to be cautious with using my hours because I will need to use a significant portion for surgery recovery. I also have to be careful about when and how I disclose that I am disabled. Though it’s illegal, I’ve been fired and harassed at previous jobs for how my chronic pain impacted my work. It’s scary opening up about a vulnerable part of yourself, especially when it can lead to unemployment, limited opportunity, and rejection. 

COVID is one of the largest mass-disabling events in our nation’s history, so you would think that nonprofits would look toward a disability justice framework for maintaining work environments for employees. Disability justice gives us the spaciousness to envision worlds where people show up to work because they’re passionate about the mission and not because they’re being coerced. Unlimited PTO would not just help people when they are sick from COVID; it could stop the spread of COVID at in-person workplaces. COVID has changed all of our lives, and we need more time dedicated to testing, accessing masks and resources, and recovering after vaccinations. While some workplaces have added more COVID PTO, these benefits have mostly been considered temporary, only existing while COVID dominates media discourse. This expectation that eventually we will all go back to “normal” is unrealistic at best, but also violently ableist

Nonprofit bosses will sometimes argue that their organizations cannot offer unlimited PTO because some research shows that people with unlimited PTO do not take off as many hours as they would have had the PTO been mandated. Statements like these fail to understand the bigger picture. Not only do we need unlimited PTO, we need a work culture and environment where we feel encouraged and safe taking it. If an organization offers unlimited PTO but also is heavy on retribution or promotes an unhealthy work culture where productivity is prioritized above everything, then of course employees would not feel empowered to take their PTO. Another argument against unlimited PTO is the fear that employees won’t get their work done. However, this argument fails to account for the fact that someone showing up to work in the midst of a flare-up, or dealing with extra symptoms associated with their chronic illness is typically just doing whatever it takes for the day to go by quickly. Instead of working through my pain and extending the life of my flare-up by days or even weeks, it would be more beneficial to have two-to-three days of dedicated rest and healing. This way I can show up to work focused and motivated. 

While unlimited PTO is a powerful way that workplaces can show that they respect and honor their employees’ time and health, it is only the beginning. We need a complete overhaul of our work structures, and that won’t come through just hiring additional social justice consultants or sending out long surveys. A commitment to disability justice means a commitment to understanding the ever-changing ways that ableism impacts all of us and unlearning the systemic ableism that has permeated our society since the beginning of capitalism. Disabled employees who lack the protection that management has are begging people in leadership positions to not only hire us, but to respect our guidance and trust our analysis. We need our work environments to understand that there should be “nothing about us, without us.” 

K Adetoyin (Toyin) Agbebiyi is a Black lesbian, and disabled organizer, writer, and macro social worker from Kennesaw, Georgia. They earned their MSW from the University of Michigan School of Social Work....