Inclusion

In 2007, I was invited to participate in a Kavali conference on the human healthspan. It focused on thinking about ways to help people live more of their lives with good health. It brought people from a wide range of disciplines to the table to talk in seminar rooms about the issues involving reducing disease burden, identifying assistive technologies, and other interventions.

I was invited because I had developed some approaches for drug delivery in the eye that were relevant for diseases of the aging eye.

What I brought to the meeting was something entirely different.

My mom had stage IV bladder cancer. I spent a week a month at home taking care of her. A year earlier she had moved in with me to get treatment for stage III bladder cancer. While the original treatment looked successful, three month later, the cancer had recurred in a range of tissues.

I brought the lived experience of taking care of someone with a serious, life ending illness. I knew more then that I ever will, I hope, about morphine doses, side effects, pain, financial challenges associated with care, and what it is like to try to help someone you love while being on the tenure track in academia.

I was supposed to talk about technologies, and to some degree I did. But the part that I brought and shared that was unique in that room was the experience of the caregiver. A big part of the conference was about the challenges of aging and how they could be managed, but no caregivers– people on the front lines of managing aging and illness were there, except me.

The conference was a great one for a variety of reasons. Professionally, I made connections that led to my next position, and personally, I made some wonderful friends and got a break from the day to day challenges of juggling everything.

When we think of inclusion, we often think of it along racial or gendered lines. That is certainly an important part of it. But different experiences and stories are also important. Sometimes, we can’t plan or expect how the experiences will be involved. What we can do is make sure we engage as many people from as many different perspectives as possible and give them the space to tell their stories. All of their stories, and not just the one we assumed they would represent. To start, we invite, and then we listen.

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