One of those deaths is relevant here.
Niki reached out to me several years ago, a year after her brain tumor diagnosis.
She needed a librarian to help her get to documents and emerging research findings that weren’t freely available.
Niki did not have an advanced degree. She had no university contacts.
What she had was a serious information need and a pressing desire to learn what she needed to learn to understand dense medical content.
Niki was beautiful and intrepid.
But she quickly learned that the information she needed was not available in the free medical portals she’d already exploited. Most of it existed behind a wall even she could not move.
Niki would come to me with citations and abstracts, names of researchers, and leads relating to new clinical trials. I used the databases we subscribed to and called in university favors to get her to the fulltext she needed.
She got really good at reading and interpreting and sharing the dense language of cancer research for herself and for the growing online community she supported.
In what felt like black market activity, I poked into subscriptions I didn’t subscribe to. I moved what walls I could move.
And as I did, I wondered how many other Nikis did not have access to a personal librarian, or just never knew they could seek an information advocate to easily move the walls separating them from the research they needed.
Yes, information is a commodity.
But sometimes information is a life and death issue.
How can we work together to tear down walls to content, to make life just a little easier for those who are desperate to understand their options?
Can we establish some kind of program in honor of Niki?
I don’t know how, but I know we must find a way to offer some kind of research lifeline to those with critical and immediate information needs.
Situations like this feel antithetical to everything I stand for as a librarian.