Luisa Dillner: Identity and humanity at TEDMED, day 3

luisa_dillnerIt’s at the end of a long TEDMED day that Andrew Solomon comes onto the stage. He looks a bit shiny, with a smart blue suit (did no one tell him the dress code is resort casual?) and a high forehead. He turns out to be single handedly worth the price of admission to this conference (as I am later to shout without realising he is standing right behind me). This is because he tells a story ostensibly about him,  that is as much about us.

He is speaking on the theme of identity. This may not sound immediately medical, but becomes so when he reminds us of how medical thinking and its advances influence identity.

So he starts with a quote from Time Magazine in 1966 (when he was three years old). It’s chilling stuff about how homosexuality is a “pathetic secondary substitute” for normal relationships and represents a “pitiful flight from life that deserves no treatment and no compassion.” Opinions have changed sufficiently for President Obama to declare his support last May for same sex marriage. So how, asks Solomon, did we move so quickly from an illness to an identity?

When he was a young boy, shoe shopping with his brother, and behaved so well that the assistant offered him a balloon, he asked for a pink one. “But your favourite colour is blue,” said his mother. “What colour do you want then?” asked the assistant. “Pink,” insisted Solomon.  “Blue,” said his mum.

That as an adult, his favourite colour is blue, but he’s gay is, he says, a measure both of the strength of his mother’s influence and its limits. His parents loved him, but struggled to accept his sexuality. It made him think there are two types of identity—the vertically transmitted one from your parents that makes you like them and the horizontal one you develop for yourself from peers as you grow up. This is the one that your parents find alien and want to cure. It is the one they take time to accept however much they love you. Most gay people, he says, are born to straight parents who want them to function in a straight world.

Solomon is a writer (mostly for the New York Times) and he spent ten years on writing a book (that modestly he doesn’t plug on stage) called Far from the Tree. The book is about identity, but also about love. He interviews parents of children who have very different identities from their parents. Their children are deaf, they have autism, dwarfism,  and one of them killed his classmates at high school (and his mother still loves him). He immerses himself in the culture of deaf clubs—even attending the Deaf Miss America contest in Tennessee. Deafness, he realises, is not the absence of hearing, but has its own culture and an identity that is as valid as anyone else’s. He points out that social progress means we are more accepting, but that in parallel medical advances mean that there are fewer children who are deaf (because of cochlear implants) and fewer children with Down’s syndrome because of screening tests. He concludes that as far as the children are concerned—they grow up to engage with the life they have and they don’t want to be eliminated or cured. He realises that negotiating differences in families is a universal phenomenon—not just his personal experience. The love he sees during his book project prompts him to have the children he never thought he’d want, with his husband in a dizzying arrangement of surrogates and lesbian friends that involve five parents, four children, and three states. “There are people who think families like mine should not exist,” finishes Solomon, “But just as we need species diversity we need diversity of family to strengthen the scope of kindness.”

Even people watching Solomon in rooms on monitors instead of the main stage cheer him. What’s not to like about reaffirming humanity?

And there is humanity in abundance today…

Amanda Bennett is another writer who speaks almost as poetically as Solomon. Some presenters at TEDMED are high energy. They project, they point, they speak loudly, and some of them say the same thing over and over again as if we didn’t get it the first time. Hey, everyone can be a scientist and we can crowd source doctoring. I don’t disagree, but I prefer the writer’s approach. They just talk to us. Bennett tells us how she met, loved, and lived a life travelling, working, and having lots of children with her husband. When he got a rare kidney tumour they “fought, struggled, triumphed” and somehow, trying every new drug they could, he outlived his dismal prognosis by seven years. When he died, they never had a chance to say goodbye because they were still hoping he’d survive. “We never got to no hope, “she explains, “Because we just kept redefining hope.” She makes the point that doctors might call this denial, but she just believed she could keep her husband from dying, There is not, she says tellingly, a heroic narrative for letting go, for acknowledging a valiant battle, and a gentle surrender.

And this is true, she argues, for doctors as well.

Except later, hearing the passionate and compassionate John Kheir, a Boston pediatrician speak, you remember why not letting go can be a good thing in medicine. He shows the picture of curly haired Jordan, a “wicked cute” baby. And we know, for sure that in this story this child will die, which is exactly why I never had the guts to do pediatrics (that and their teeny veins) and want to sidle out of the auditorium. But I can’t and so I hear in painful detail how she dies from a catastrophic bleed, managed as desperately and well as possible, partially because of irreversible brain damage from being deoxygenated for too long. So Kheir can’t gently surrender. In fact he can’t sleep, or hear what his wife is saying to him. Or do anything else except try to work out how to get oxygen filled micro particles into blood to avoid brain damage during cardiac arrests. After five years he has published his translational research showing it works in animals. Goodness you want it to work for him as much as humanity.

Rewinding to the morning this was all about innovation, with panels of healthcare innovators followed by those in industries outside of medicine. It’s fine but a bit flat. Michael Weitraub, founder of Humedica, says you should never build something just to sell it.  Call me mean spirited, but I see in his programme biography that he sold his previous start up to the massive UnitedHealth Group.
Staying with innovation, Christopher J L Murray, a doctor and health economist, is director of the Institute for Health Metrics and Evaluation and shows us GBD compare, an online tool for comparing the global burden of disease. And very good it is too—since you can use it in real time and compare traffic deaths in China (high) to those in the UK (much lower), analyse clinical outcomes over time, visualize maps of premature death, and not only is it about the world, but it’s free to access globally as well.

Since I’m mostly talking highlights here, there is a themed session about letting life into death. Charity Tillemann-Dick, an opera singer who was diagnosed with pulmonary hypertension, had two double lung transplants, and sings us an aria from the opera Rigoletto.

Finally Kelli Swazey, an anthropologist, talks about Toraja, in Indonesia, where death is so not hidden that people continue to live with their dead family members until they get round to raising the money for the mandatory elaborate burial rituals (which can last a few weeks). Her husband, who comes from this community, has fond childhood memories of playing with his dead grandfather. There is a cultural rather than biomedical definition of death, with a transition period from this life into the next, during which the family get used to the person not being as alive as they used to be.  The Torajans, she says, do not set much store in preserving life. This has made Toraja a tourist attraction, with thousands of people coming each year to see how the Torajans do death.  The inference being that their approach to death means they do life better too.

Luisa Dillner is head of BMJ Group research and development.