Lisa Danielson is the director of the Center for Space and Earth Science and the NASA Program Manager for Discovery Science and New Missions at Los Alamos National Laboratory — all while managing the debilitating side effects of an aggressive cancer treatment that saved her life, but changed her body. This July for Disability Pride Month, she talks about the importance of changing perceptions of disability, illness and injury.
Twelve years ago, I was diagnosed with triple negative breast cancer. The treatment was intense and neuro-toxic, and as a result, I suffer its side effects: chronic fatigue, chronic pain and neurocognitive disabilities. I also manage additional side effects, including PTSD, lymphedema, vertigo and nerve damage to my hands and feet. For minor examples, I am a runner, but I don’t feel blisters developing. Or if I am carrying things, I have to carry them in a way where I can sense their weight, or I can’t hold onto them and will drop them.
To those around me, I appear positive and upbeat, but by the end of the day I really crash because managing pain, fatigue and neurocognitive difficulties is draining. I try to seek out things that make the most of today because tomorrow, I may feel completely different.
Finding new ways of working and encouraging open dialogue
Disability affects my job, but I have a number of coping strategies. One example is that I have to arrange my schedule (and particularly travel) carefully to deal with chronic fatigue and my neurocognitive challenges. Also, as I’m sure as is common for many people with disabilities, I face roadblocks with people who don’t understand how I have to manage my disability and mistakenly conclude that I’m being difficult or unreasonable. Nearly all aspects of my disabilities are invisible, and I always need to explain why I am the way I am — but some days I don’t have the energy to explain.
When I came to Los Alamos National Laboratory, I decided to be open about my disabilities, but sometimes I incur judgment from individuals because I have neurocognitive difficulties as a career scientist. Some required software programs can be difficult for neurodivergent people like me to use. These tools are not designed with accessibility as a focus. However, if you build a tool that is accessible for persons with disabilities, those design principles benefit everyone. Even so, it can be a major struggle to convince policy makers that accessibility as a ground-floor software design principle is a worthwhile investment. That’s where groups like the Lab’s DiverseAbility Employee Resource Group come in; because DiverseAbility not only supports individuals with disabilities but advocates for our needs to decision makers who might not understand at first.
What all of us must ask ourselves is, “How does a tool (or other policy decision) disproportionately affect persons with disabilities?” For example, I can do just about anything, but it just takes me longer overall (like most persons who have a disability). Individuals with disabilities also need more opportunities to rest and recover. This is a critical need — but it’s not available in a traditional work environment.
Embracing support and advocacy
Having a strong support system is critical, too. My partner also works at the Lab and gives me a lot of support. A recent challenge we had was that my partner got really sick with COVID-19 which transitioned to Long COVID. This was a common example of vulnerability, how just coping with trying to work full time and manage a basic household for the two of us can easily become stressful and feel almost impossible.
In the past I’ve had a lot of support from MD Anderson Cancer Center in Texas. They provide a great support network, so I became a peer counselor to help others who have cancer, as well as their caregivers. I’ve given entire seminars about my recovery journey; it’s a personal success story.
My advice to anyone with a disability is to fight to make systemic changes! In this country, illness, disability and injury are treated as personal failings, and thus it’s seen as the individual’s responsibility to manage them, rather than the broader society. The truth is, if you live long enough, everyone will have a disability of some kind. So why not fix the system so everyone benefits and can continue contributing to the workforce? Because many organizations will only do what the law requires, we need new laws that truly support equity in accessibility.
DiverseAbility is an employee resource group at Los Alamos National Laboratory that has 157 members. At the Lab overall, 904 employees identify as individuals with disabilities and another 147 identify as disabled veterans.