Disability and Science

In 2016, after my ALS diagnosis, we moved again now to UC Riverside to lead a new Institute (EDGE: Environmental Dynamics and GeoEcology Institute). I had to start all over again building the lab and making personal connections. This time it wasn’t as easy as it was in 2013. There were a few disappointments.

“I thought we’d be further along than this,” my long term friend and colleague, Noreen Tuross, said as we discussed how women fare in academic departments, particularly as we’ve aged. I’ve seen a lot in my career but nothing could prepare me for ending my nearly 50 year scientific journey being sidelined by ALS, a disease I knew about but never imagined would partly define me. As the only senior woman scientist at a major research institution for about 35 years, I grew up and was used to the trials that women face during graduate school, postdoc training, job hunting, grant writing, and lab building. Over time, I developed a sense of where I wanted to go with my scientific career, had a full family life, and once my children were out of the nest, I was ready for extra challenges.

No one can predict when health crises may strike. As a chemist working with toxic substances and solvents my entire career, I felt that cancer might be in my future, even though I was careful from day one. In 2014 on a trip to attend a conference in Germany, my ankle buckled once – then two more times, followed by months of falling over at odd times, and wondering why carrying things seemed so difficult. After 18 months, I received the ALS diagnosis. My world stopped for days to adjust to the news. At the same time, I was being recruited for a more senior position at UC Riverside and offered the opportunity to create an institute in my field and bring together interdisciplinary faculty. My husband

newly disabled person and a member of two academic departments, as well as directing a new Institute is enough work for the youngest and healthiest. No longer able to unpack boxes of books or samples, no longer able to wield the wrenches needed to assemble a laboratory, and no longer helped by the group of students and postdocs from my former campus, the task moved at a pace I was impatient with given my new sense of time. Gradually, very deliberately, people were hired, accommodations were made for my disability, and things fell into place. In August 2018, a year’s worth of planning culminated with the instal- lation of a first-of-its-kind instrument, the purchase of a vehicle to take our instruments to remote locations, and the submission of three extramural grants. Being offered an endowed professorship at UC Riverside was a wonderful opportunity. I am able to hire undergraduates to work on sustainability, invite guests to visit from around the world, and provide graduate students with research stipends. At this stage in my life, I shouldn’t complain. Although I’d been promised a promotion to “Distinguished Professor”, administrators reneged on their offer. This decision was deeply disappointing. I realised later that women in the college of science who are members of the National Academy are those accorded the distinction of “Distinguished Professor”, however men in the college have been given the title without being members of the NAS.

After completing the first draft of this epilogue, I sent copies to UC River- side’s leaders and within a week heard back from my Dean, Kathryn Uhrich. She called and asked if I was amenable to trying to re-do the Distinguished Professor process in an expedited manner. Of course, I said yes, but this time it had to done right with proper letters and consideration of my whole career. By the end of April, the promotion package had been sent to the Provost’s office. Based on what I read in the external letters and the department review, I was hopeful.

On Tuesday, April 30th, I had just taken my first sip of morning coffee when my cell phone started to buzz. A text message from Kate Freeman

appeared. “I am writing to say congratulations on your election to the National

Academy of Sciences this morning!!” Needless to say, I was stunned and called right back. At 6:40 am, I received congratulations from seven friends who are members of the Academy. The rest of the day went fast as phone calls, emails, and flowers came rolling in. By Friday, more good news arrived. I had, at last, been promoted to Distinguished Professor!

The timing, though, seemed to still support the uncomfortable fact that women needed to be Academy members to be Distinguished Professors. I learned, however, that the committee making the decision for the promotion had decided mere days before the NAS election! This small fact is important for busting open the opportunity for women to advance without selection by an outside organisation.

I wonder if the University would have honoured its original offer if I arrived on campus without a wheeled walker and a diagnosis of ALS. Alterna- tively, perhaps my recent physical disability had little or nothing to do with the

University’s decision. But I would bet, and it would be a reasonable bet, that if I were a man rather than a woman, the promotion wouldn’t have been delayed by three years. Women, and even men, in academia need to have the resilience to let frequent disappointments fall to the wayside and not let anger shape their outlook. I’ve managed to continue having fun, enjoy my colleagues, and embrace the work of teaching young students. Even with initial disappointment to expand my career, I was able to figure things out, make positive impacts, and move on and up notwithstanding a crippling disease.