I went to a meeting in Chinatown attended by parents with children on the autism spectrum going to Boston Public Schools. The attendees spoke Mandarin, Cantonese, Vietnamese, English, and Bureaucrat-ese. The parents helped each other advocate for services for their kids. Most only spoke one of those languages. After 2-3 minutes of speaking in one language, someone would raise their hand and there was cross-translation by the 2 or 3 people who spoke more than one language. This repeated for about an hour. I went home and my 7-year-old grandson tried to teach me to play Pokémon. I understood less than I did in Chinatown. Opa, you don’t understand this at all!!
I go to meetings of researchers and academics for PCORI (Patient-Centered Outcomes Research Institute) and call into a weekly meeting of Information Technology/coder geniuses working on developing the technology and rules for person-centered exchange of health information (OpenID HEART). I join both as a patient advocate. I start each session feeling like an 8-year-old going to college for the first time. I’m in awe of the brains and credentials around me, wonder what the heck I’m doing there. I concentrate as hard as I can to understand the lingo and the acronyms and get distracted googling something I have no clue about. Then I remember I belong there. I’ve done my homework, I have specific person-centric concerns and I speak up. In my last job I had new staff from Nigeria, Kenya, and Egypt entering a team of veterans who had been working at the company for 10-25 years. My job as leader was to help them all become a team with a common purpose. I often stopped conversations to translate. I’m treated with respect in each of these settings. And I’ve been a nurse for 40 years, a leader for 30, an informaticist for 20, and a person for 63. I empathize with people on a health journey who don’t speak English. Who cross translates for them? Are they respected and listened to? Health literacy is a puzzle. Please take the time to translate and listen. The life saved could be your own.