Why be normal? Q&A with Rosie King

Rosie King diagnosed herself with a high functioning form of autism (Asperger’s Syndrome) at age nine and has become a spokesperson for autism in the United Kingdom, including hosting an Emmy award winning BBC documentary on the subject. Shortly after her 16th birthday, she spoke on the TEDMED 2014 stage about her journey.

We asked Rosie a few questions to learn more about her remarkable story.

Why does this talk matter now?

I think the ideas I share in my talk have always mattered.  Society is at a stage where it is beginning to understand equality– I want this to move on from addressing racism and sexism, to addressing discrimination in all areas.  This is the only way to have a civilized society.

Gratefully not normal: "I wouldn't trade in my autism and my imagination for the world." Rosie King, TEDMED 2014.

“I wouldn’t trade in my autism and my imagination for the world.” Rosie King, TEDMED 2014. Photo, Sandy Huffaker for TEDMED.

What legacy would you like to leave?

I want everyone in the world to know that it is important to be themselves.  I come from a family where everyone is different.  We could be a sad family but we have always been encouraged to be proud of ourselves and celebrate our talents.  If the whole world was like my family then it would be a joyful world.  I want to take a little bit of my family’s attitude out there.  It could be like flicking a switch, and I hope that my talk will be that switch.  To ask someone to be anything other than who they really are is cruel, like killing their real self.  Also, that genuine self that could bring so much color to the world!

What did you learn at TEDMED?

Denise [TEDMED speaker coach] taught me about body language and how to speak to a big audience–  that was useful.  I also listened to a very interesting talk [Rebecca Adamson] about how Native American people were treated.  This made me very upset but also glad that it was being brought to light.

For all inquiries regarding speaking engagements or to learn more about her current work, please contact Joanna Jones.

Keep up with Rosie and her family on their blog, My Perfectly Imperfect Family, and check out the books Rosie has illustrated authored by her mother, Sharon.

Reimagining an old technology: Q&A with Drew Lakatos

Engineer and entrepreneur Drew Lakatos, CEO of ActiveProtective, created a smart garment that uses airbag technology to protect the elderly from hip fractures when they fall. We caught up with Drew and learned more about his work and experience at TEDMED 2014.

Reimagining

Reimagining an old technology. Drew Lakatos, TEDMED 2014. Photo: Sandy Huffaker for TEDMED.

What motivated you to speak at TEDMED?

We are introducing a new technology (that repurposes an old one) that most people will scratch their heads the first time they hear or see it.  Only after studying the problem, as well as its size and scope, does it become clear that there really is no other way to prevent hip fractures in the frail elderly.  By sharing it at TEDMED, we hope to raise awareness and begin familiarizing it as an intuitive treatment for those at highest risk.

Why does this talk matter now? What impact do you hope the talk will have?

This talk matters now because of the seismic shift required to shift our “sick-care” system to a “healthcare” one by introducing, proving, and promoting preventive technologies that can completely avoid these tragic, expensive, death-sentence episodes of injury.

What were the top TEDMED2014 talks that left an impression with you?

I was shaken watching Marc Koska’s hidden video of a healthcare worker sharing needles of HIV+ patients. I was moved by Debra Jarvis’ warmth and honesty, and inspired by her heartfelt talk. I was touched, confused, and still processing Bob Carey’s Tutu Project. I don’t know where to store the images in my head, and loved his raw honesty.

What happens when doctors move towards transparency? Q&A with Leana Wen

Physician and public health advocate Leana Wen discussed a highly controversial approach to transparency in the clinical encounter. We caught up with Leana to learn more about her ideas and actions in public health advocacy.

What happens when doctors move toward transparency?

“I want doctors and patients to come together to end the sickness of fear.” Leana Wen, TEDMED 2014. Photo: Sandy Huffaker for TEDMED

What motivated you to speak at TEDMED? I wanted to share a message to doctors, patients, innovators, and all those who are committed to transforming the future of medicine. There is no place better to do that than at TEDMED, in front of people want to learn paradigm-changing ideas and who are already motivated to take action!

Why does this talk matter now? What impact do you hope the talk will have? It’s harder for people now than ever to establish a long-term, trusting relationship with their doctor. There is a growing disconnect between what patients need and what doctors do. I explain in this talk how radical transparency will empower both patients and doctors (and other providers). I hope doctors watching the talk will choose radical transparency and voluntarily disclose both financial conflicts and personal views to their patients. I also hope patients—people—watching the talk will prioritize transparency and choose their doctors accordingly.

What were the top TEDMED2014 talks that made an impression on you? Sonia Shah flipped my conception of cause and effect, and how we may need to change the focus of public health and medical interventions. Eleanor Bimla Schwarz stopped me in my tracks to appreciate how our bodies are made, and how our efforts to interfere with normal body processes can have downstream adverse consequences. Gail Reed and Sigrid Fry-Revere challenged me away from U.S.-centric thinking to consider there is much to learn from how other countries serve patients.

What is the legacy you want to leave? I want doctors and patients to come together to end the sickness of fear. Doctors can take the first step, and let patients into our world. We can ensure patients and their families take part in all bedside rounds. We can embrace open medical records and open disclosure of medical errors. We can show vulnerability and humility with our patients. These are all steps to change the paradigm of medicine from one of secrecy and hierarchy to one that is fully open and engaged. I would love to live in a world where doctors and patients (and all healthcare providers) come together to be equal partners in medical care, without barriers or secrets or fears.

Please share anything else you wish you could have included in your talk. I wish I had more time to talk about how transparency may seem scary, but that research shows openness helps doctors as well as patients. There are studies that show collaborative medical records and open disclosure of medical errors increase patient trust, improve health outcomes, and even decrease malpractice. This will be particularly important as doctors are being measured on quality metrics like diabetes and blood pressure control. Lifestyle changes require trust, and trust requires transparency.

Lab Testing Reinvented: Q&A with Elizabeth Holmes of Theranos

The United States spends more on healthcare than any other Western nation – more than two and a half times the amount spent by most developed countries. Even so, most Americans do not have access to quality, timely care. Patients seeking care face unpredictable costs for even the most routine diagnostic procedures, like blood testing.

These hurdles are so prohibitive that seeking out healthcare is often viewed as a last resort – an option to be considered only when symptoms appear. In some cases, this can be too late. Elizabeth Holmes reminds us that access to affordable, preventive care is a human right. It is this right – the right to be as healthy as possible – that is at the root of her mission to make actionable health information accessible to everyone at the time it matters.

At TEDMED 2014, Elizabeth talked about this right and the importance of enabling early detection and empowering individuals to make educated decisions about their healthcare.

Elizabeth Holmes, TEDMED2014. Photo, Jerod Harris, TEDMED.

Elizabeth Holmes, TEDMED2014. Photo, Jerod Harris, TEDMED.

We reached out to her with a couple of follow up questions about her work and her company, Theranos.

Why does this talk matter now? What impact do you hope the talk will have?

We believe the right to protect the health and wellbeing of every person – of those we love – is a basic human right. Yet, in the United States today, healthcare is the leading cause of bankruptcy. Similarly, lack of healthcare is the leading cause of the suffering associated with finding out too late in the disease progression process that someone you love is really, really sick. We believe that every individual has a right to accurate, affordable, real-time health information before people become so sick that it is too late to change outcomes.

What is the legacy you want to leave?

Our mission at Theranos is to make actionable information accessible to everyone at the time it matters most. Theranos is a new paradigm of diagnosis, in which every person will be able to see the onset of disease in time for therapy to be effective. Through it, we see a world in which no one ever has to say “goodbye” too soon, and people are able to leverage engagement with their health to live their best lives.

“Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.” -The Universal Declaration of Human Rights, Article 25, Point 1.

How ultrasound became a disruptive innovation

Resa Lewiss, Director of Point-of-Care Ultrasound and Associate Professor of Emergency Medicine and Radiology at the University of Colorado School of Medicine, unlocked imaginations about ultrasound applications in her talk at TEDMED2014. She explained why and how ultrasound at the bedside has become a game changer for clinical care.

She recently took a moment from her duties in Denver to share more about her work and impressions of TEDMED.

Resa Lewiss: How Ultrasound Has Become a Disruptive Innovation

Reas Lewiss at TEDMED2014. Photo by Sandy Huffaker for TEDMED

What motivated you to speak at TEDMED?

I attended TEDMED2013 in Washington DC. I was inspired by the people, the space and the vision of TEDMED. I believe that the arts inspire creativity and innovation. And innovation begets innovation. I live the aphorism mens sana in corpore sano, [a sound mind in a sound body]. TEDMED does too.

Why does this talk matter now? What impact do you hope the talk will have?

This talk will hopefully deconstruct healthcare silos. Point-of-care in partnership with ultrasound can be a concept that is difficult to comprehend. I hope to have connected the dots between the technology and the resultant improvement in patient care- for health care providers, people in tech and people in the world. The safety profile, time efficiency and cost effectiveness are self-evident.

Tell us about the top 3 TEDMED2014 talks or performances that left an impression with you.

Jill Vialet: Sobering reminder for ourselves and loved ones. Play is healthy.

Barbara Natterson-Horowitz: Back to basics, obvious and inherent and yet never quite articulated in this way before.

Bob Carey: Honest and emotional. Much respect for his willingness to show his vulnerability; a sobering performance.

Robin Guenther: She hit it on the head. Who is looking out for the healing and healers? Thank goodness she is. Mens sana in corpore sano.

What is the legacy you want to leave?

One of quality, integrity, justice, honesty, excellence, and mindfulness.

Contact Resa to learn more about how to encourage point-of-care ultrasound curricula integration at all medical schools and for all providers.

Resa Lewiss at TEDMED2014. Photo by Sandy Huffaker for TEDMED.

“Think Big”: Q&A with Eric Chen

At TEDMED 2014, Eric Chen urged us to think big and never stop asking questions. Halfway through a very exciting first semester at Harvard, Eric Chen checked in with TEDMED to answer a few questions we had about his talk.

What motivated you to tell your story on the TEDMED stage?

I see huge untapped potential in kids and nonscientists all over the world, especially in this day and age when the Internet has given all of us so many resources unavailable in the past. However, so many people seem to be intimidated by scientists and the idea of research—they don’t believe they can do something so seemingly complex or sophisticated. I saw the TEDMED stage as a platform from which I could share my story and let them know about their own potential.

Eric Chen takes the stage at TEDMED 2014. - Jerod Harris

Eric Chen takes the stage at TEDMED 2014. – Jerod Harris

Why does this talk matter now? What impact do you hope the talk will have?

In today’s age, we will need more and more scientists and innovators to tackle the challenges on the horizon—from pollution to overpopulation. To solve these daunting problems, we will need bold, daring thinkers not afraid to ask the unasked question. It is important that everyone knows they can contribute, regardless of their background or situation, and that a groundbreaking discovery can be just a question away.

What is the legacy you want to leave?

I hope that my message can encourage more youth and nonscientists to think big, and to participate in science, research, and medicine. I would like to help spread the democratization of knowledge, science, and medicine.

Taking Eric’s advice, we didn’t stop asking questions there.  In the spirit of curiosity, we tacked on a few fun questions for your enjoyment:

If you could meet your 10-year-old self, what would you tell him?

I would tell him that I now know how to time travel, and then go collect my Nobel Prize.

If you were immortal for a day, what would you do?

I would completely wreck the world record for most time with breath held underwater.

If you could meet anyone, living or dead, who would you meet?

I would meet Richard Feynman. I’ve always admired not only his scientific ability but also his curiosity and sense of humor.

Notably Ig Nobel: Science humor

Author and newspaper columnist Marc Abrahams is the editor of the science humor magazine Annals of Improbable Research. At TEDMED 2014 he shared laughter- and thought-provoking stories behind some of the winners of the Ig Nobel Prize Ceremony, which he founded and hosts. Almost all humor aside, Marc snuck away from his duties for a few moments to answer questions for us.

Marc Abrahams at TEDMED 2014: Science Humor

Marc Abrahams at TEDMED 2014. Photo: Sandy Huffaker for TEDMED

Why does this talk matter now? What impact do you hope the talk will have?

People are sometimes given very serious advice about their health by Very Important People who know little and assume much. Look at the crazy advice that some politicians and some journalists are giving us — “Don’t vaccinate your kids!”, “Ebola was created by evil people who want to attack the American public!”. If someone — no matter who it is — tells you something that seems absurd, the best thing you can do is laugh, if it strikes you as funny… and then go find out the facts, and think about them. And THEN decide what you think about their advice.

What kind of meaningful or surprising connections did you make at TEDMED?

Three people each told me about scarily good candidates for future Ig Nobel Prizes. I probably would never have heard of any of those nominees if I hadn’t gone to TEDMED. (Sorry — I am not permitted to tell you anything about those nominees. We have rules, y’know.)

What is the legacy you want to leave?

I hope I helped at least a few people decide that it’s okay to make their own decisions — rather than simply accept what some authoritative person told them — about what’s good and what’s bad, and what’s important and what’s not.  

Anything else you wish you could have included in your talk?

Well, of course I wanted to tell the story of homosexual necrophilia in the mallard duck. But there wasn’t time. And anyway, Kees Moeliker, the scientist who made that discovery, is the best person to tell that story, which he did in an obscure biology journal, and then at the 2003 Ig Nobel Prize ceremony, and then again years later in a TED talk.

Can you share some highlights from the 2014 Ig Nobel Prize ceremony?

The on-stage demonstration of the technique that won this year’s Ig Nobel Prize for medicine. It was awarded to a team from the U.S. and India for treating “uncontrollable” nosebleeds using the method of nasal packing with strips of cured pork. Before that night, I had never in my life met anyone who had disguised himself as a polar bear to frighten a reindeer. I am very pleased with the premiere performance — as part of the ceremony  — of “What’s Eating You”, the mini-opera about a couple who decided to stop eating regular food, and instead get all their nutrients from pills. The lead singers were magnificent, and so was the chorus of their intestinal microbes.

What was your favorite winner from the 2014 Ig Nobel prize ceremony?

I am entranced by the Nutrition Prize winners — Raquel Rubio, Anna Jofré, Belén Martín, Teresa Aymerich, and Margarita Garriga, who published a study titled “Characterization of Lactic Acid Bacteria Isolated from Infant Faeces as Potential Probiotic Starter Cultures for Fermented Sausages.” They could not travel to the ceremony, so instead sent us a mesmerizing half-minute-long video in which they explain what they did and why, and then eat some of the sausage. MA2

Claim your experience: Beyond the survivor identity

In her 2014 TEDMED talk, Debra Jarvis, a writer and former hospital chaplain, offered a witty and daring look at the way that survivors of disease and trauma can achieve new levels of emotional and psychological healing. We caught up with Debra in between her sabbatical adventures in Europe.

Debra Jarvis, Cancer Survivor

Debra Jarvis at TEDMED 2014, Photo: Sandy Huffaker

What motivated you to speak at TEDMED?

As a chaplain I always walk the line between science and spirituality. I knew that I had a unique perspective as a hospital chaplain, as a family member of someone with cancer and as a patient myself. So I had seen the issue of survivorship from all these different perspectives and knew TEDMED was a perfect venue to give a voice to the many patients who talked to me over the years. I spoke for a lot of people in that talk.

Why does this talk matter now? What impact do you hope the talk will have?

This talk matters now because the pressure to be a “participating” survivor is high and although I think funding cancer research is important, taking on this identity can keep people stuck.  Although the context of my talk is specific — taking on “cancer survivor” as an identity — I hope  that listeners/viewers will realize that the problem is universal. Taking on any kind of “victim/survivor” identity is deadly. It can be cancer, it can be a car crash, it can be being dumped by a lover! My suggestion remains the same: Process your feelings, mine the experience for all it’s worth and then move on. Keep growing. Keep becoming.

What kind of meaningful or surprising connections did you make at TEDMED?

The best thing for me about TEDMED was being around so many people who are using their power for good. As Spiderman’s uncle said, “With great power comes great responsibility.” And so many of the speakers there were using their brains, education and energy to find solutions to some of the world’s thorniest problems. They are taking on great responsibilities, and that is inspiring.

What is the legacy you want to leave?

“Claim your experience. Don’t let it claim you.”

Anything else you wish you could have included in your talk?   

I wish I had time to talk about knowing the difference between being truly wounded and simply not getting what you want. The latter is your ego stamping its little foot and whining. I would have also loved to talk about what it would be like to not carry a wound, but instead carry a scar. A scar is so much stronger than the original tissue! And finally, I wish I could have included why I think we get so excited about surviving: It’s because we are so afraid of death. It’s like, “You’re a survivor!” but the unspoken thought is, “For now.” Because ultimately, no one survives. Americans in particular are loathe to face this. I would have loved to talk about teaching our children not to fear death and to give some great examples I’ve seen of how to do that.

An Extraordinary Out-of-Body Journey

In her TEDMED 2014 talk, photographer Kitra Cahana shared a new visual language accompanying the extraordinary story of her father’s severe brainstem stroke, a catastrophe that they transformed into an inspiring and imaginative spiritual journey. She spoke with us via email about her talk and her father’s progress.

What motivated you to speak at TEDMED?

It’s very difficult to express the sublime and the surreal in words and photographs. I wanted to attempt to communicate all that my family had experienced in the summer of 2011 – my father’s brain stem stroke, and the profound spiritual awakening that followed – with others. When my father first had his stroke, I wrote down these words, and whispered them to him when I first came to his bedside: “We only ever needed one pair of hands, two legs, a respiratory system to keep the world afloat between us.” This became my mantra. We can sustain ourselves through each other. This is what my father taught us; he said that all who came into his room of healing should expect to be healed themselves. Healing has to be mutual.

Kitra Cahana at TEDMED 2014. Photo: TEDMED/Sandy Huffaker

Kitra Cahana at TEDMED 2014. Photo: TEDMED

The stroke ruptured my reality as well as his. In those initial months, so devoted to his limp body and to allowing him to communicate all that was bursting to come out from within, I saw sides of myself I never knew existed. I would have loved for him to have spoken at TEDMED himself. But as in the hospital, where my mother, sisters, brother and I acted as his mouthpiece, so too do we continue to act in that capacity, sharing his words and his Torah with others.

Why does this talk matter now? What impact do you hope the talk will have?

To me, this talk should be timeless. In fact, part of my father’s message is that he hopes others will step outside of the space-time hustle and bustle that many of us are so used to. He experiences life in a kind of slow-time (that’s what he’s called it), watching with curiosity as his body reawakens tingle by tingle, twitch by twitch. He spent and continues to spend hours alone with himself. That space of aloneness with his thoughts is not a place of anxiety, but a place of joy and introspection.

I hope that others get a sense of this slow-space-time, where you exist only with yourself, with those other humans that you are intimate with, and – my father would also say – with G-d. I tried to recreate this kind of in-betweenness (in between the inside and the outside, heaven and earth, body and mind) in the video series and photographs that I have been working on and that I presented in the TEDMED talk.

What kind of meaningful or surprising connections did you make at TEDMED?

I met a wonderful woman at TEDMED who runs a high-end rehabilitation center in Boca Raton, Dr. Lisa Corsa. Our chance encounter at the coat check turned into a half-hour consultation, wherein she reaffirmed our family’s sense of what intensive rehabilitation should look like. A body that has had every system affected as severely as my father’s needs hours of attention each day if there’s any intention for it to make functional progress. A body that doesn’t move hardens; it stiffens and withers away.

We have a wonderful circle of volunteers who give so much of themselves, but it’s not enough. Dr. Corsa helped me get a sense of how far we have to go to advocate and fundraise for my father to receive the minimum amount of proper care and attention. He’s currently living in an institution with limited human resources, and as a result we are only able to provide limited access to physiotherapists each week. She affirmed my resolve to fight for my father’s right to basic daily movement and to seek the funds for intensive physiotherapy, so that he can eventually move back home.

Please share anything else you wish you could have included in your talk.

Since my father’s stroke, I have become involved in a global community of people who have experienced brain stem strokes, either personally or on the part of a loved one. They are either still fully locked-in, or have since made great progress, including some partial to full recoveries. We share and compare our experiences online.

So many of those who have experienced being locked-in were written off too early. Their families were told to expect very little. As a result, they did not receive proper rehabilitation therapies, nor were their bodies moved on a daily basis to maintain a minimum quality of comfort and life. I’ve seen health care professionals refuse to address the locked-in patient directly, speaking about him or her in the third person, insensitive to the fact that the person is still completely conscious and able to communicate. We struggle every day to sensitize health care professionals and institutions.

Healing is taxing. But what is even more taxing is trying to heal in systems and institutions that drain the already low reserves of patients and their support systems. My father was able to have the spiritual experience that he had because he had a family and a congregation that preserved him in his role as father, husband and rabbi and advocated for him when he wasn’t able to.

How sleep deep cleans your brain

Jeffrey Iliff at TEDMED 2014. Photo: TEDMED/Sandy Huffaker

Jeffrey Iliff at TEDMED 2014. Photo: TEDMED/Sandy Huffaker

 

In his TEDMED 2014 talk, neuroscientist Jeffrey Iliff illuminated a newly discovered, critical function of the brain during sleep: a natural cleansing system that keeps toxic proteins at bay.  We spoke to him via email about his talk.

What motivated you to speak at TEDMED?

TEDMED offered the unique opportunity to tell the story of our research – not just its facts, but also its story. As a neuroscientist, I go to the lab every day expecting to see something new within the brain, its pieces, processes, and the systems that comprise it that no one has ever seen before. What we find within the brain – its simplicity, minimalism, functionality, and its beauty – are a continuous source of wonder to me. In the methods, results, and careful interpretation of our findings, this wonder can easily be distilled. When the outside world looks in at our work, they may only see cells, blood, water, and so many solutes; not the beauty I see through the eyepieces of a microscope. TEDMED gave me the chance to tell the story of our work as we experience it, as the story that it is.

Why does this talk matter now? What impact do you hope the talk will have?

First, I think that it is a subject to which every person can relate. Each of us who is in school, works long hours at a job, or has kids to keep them up when they’re sick, deals with the inescapable fact that sleep is necessary for our brains to work correctly. Learning that parts of the way our brains work can make intuitive sense is comforting, and makes our brains seem a little less like these strange alien machines that no one can really understand.

I think that the research itself is timely, as well. An increasing number of clinical studies have begun to link such seemingly disparate processes as sleep, neurodegenerative disease, cardiovascular disease, brain injury and others. The science that we describe, and that is the subject of my talk, is fundamental to the basic function of the brain and may help to explain many of these puzzling associations. My hope is that my TEDMED talk will spur people’s imaginations and encourage them to dive headfirst into these questions and, in doing so, drive the field forward far beyond these small contributions that we’ve made.

What kind of meaningful or surprising connections did you make at TEDMED?

During the conference, I was approached by several people who were attending TEDMED for their own professional reasons, but who had also dealt – either personally or within their immediate families – with conditions that are likely impacted by the biology that we are studying. For those of us who are scientists, but not physicians, it is incredibly easy to view our work academically, to equate progress with papers and grants, and to view treatments as ideas and hypotheses to be tested. To an extent, this is completely appropriate. But, I was reminded that, when I talk about “Alzheimer’s patients” in a scientific talk, those words stand for millions of mothers and fathers, grandfathers and grandmothers who live with this disease every day – each loved and missed as they slip slowly away. In the face of this reality, the thin replies of “We don’t know yet,” “Here’s what we think is happening,” or “Here’s something we’re testing in our mice” seem hollow and inadequate. It was a stark reminder to focus not only on what, but also whom we are trying to cure with all of this amazing science.