What led you to write this book?
We just went through a horrific dislocation of society with the pandemic. I think it is important to acknowledge that, as a society, we are not okay, and that there is a need for empathy. All of us came out of it with scars in different ways. From the government to corporations, and at an individual level, we need to ask how we can value people with health issues. My hope is to start the conversation.
How many people have long COVID?
In the US alone, there may be 3 million to 5 million people who had to leave the workforce in the past three years because of long COVID. I’ve spoken at a lot of places. There’s always someone in the audience who knows someone with long COVID or discovers that they have long COVID soon after. People come up to me from all parts of society—former Congressmen, heads of venture capital firms, construction workers.
What is the impact of living with a chronic illness?
There is a big disability wealth gap. Many people with disabilities struggle with a rigid 9-to-5 schedule and tend to be relegated to service-level jobs with low upward mobility. Living with chronic illness also creates disability entrepreneurship. Many disabled founders are so sick that they cannot do a 9-to-5 job and decide to start their own businesses. Some of the biggest technological advances come from building for people with disabilities. The typewriter was invented for people who were blind; the touch screen was invented for people with carpal tunnel syndrome.
As an entrepreneur yourself, how do you hope Strong Haulers will help people get back to work?
People with chronic illnesses are awash with data from symptom trackers, medical reports, labs, and wearable devices, but they struggle to understand what that data means and exactly how it applies to their own unique health condition. At Strong Haulers, we aim to help people with chronic illnesses understand their health data better by providing digestible reports showing relationships between habits, biomarkers, and symptoms. This will empower them with the language needed to advocate for themselves with friends, family, physicians, and employers and ultimately receive the accommodations needed to balance recovery and life.
Why should business be inclusive towards people with chronic illness?
People with disabilities are immensely resilient and offer perspectives that are missing. A fantastic book called Mismatch talks about how inclusion shapes design. If you build for people who have been left out, you end up building for everyone. All of us are temporarily able-bodied. At some point, we are going to lose our abilities, whether through aging or through sickness and accidents. Inclusion is a huge part of building better companies.
How can corporations be more inclusive?
For all the horrible things that happened during the pandemic, it significantly increased disability employment rates. With remote work, workers with disabilities were able to enter the workspace and thrive. When companies insist on 9-to-5 with no flexibility and no remote work, they unintentionally exclude people, including those who are immunocompromised, have mobility issues, and are caregivers. Corporate America must signal that being inclusive is important. Are accommodations seen as a favor or as a right?
In an ideal world, what kind of support would you want?
We need an Operation Warp Speed for long COVID. The money appropriated for long COVID research is being used to study its prevalence, not to develop treatments. We need to accelerate the development of breakthrough treatments.
We also need widespread recognition that while the emergency phase is done, there’s still a need. The hardest part of COVID was the social experience. It was the realization that everyone in my life—professors, friends, employers, landlords, people on the train—could put up barriers by refusing accommodations, kicking me out, not getting up from the disabled seats. COVID is a crisis of social isolation and rejection.
What would you want MBA students and alumni to take away from the book?
Your differences are your strengths. And slow down and take care of yourself. Sometimes you go further if you just slow down and focus.
How can private market investors and entrepreneurs identify and utilize creative strategies to work toward social equity?Innovating for Social Equity: How Private Market Investors Affect Change