Q&A with Cindy Greatrex, Founder of HATECH

I started HATECH  in 1998 as cochlear implants for deafened children were starting to become a reality. The name is a pun on HAT (hearing assistive technology) and the concept of something being high-tech.

Cochlear implant  technology was nascent back then and the costs were not covered by insurance as the procedures were considered experimental. The costs including pro-surgery mapping (i.e. clinicians aiding children to turn noise into sound) were about $40,000 out of pocket, which was a massive sum at that time. The best cochlear implant results came forth were children were pre-lingual.

So parents had a very limited timeframe beyond the diagnosis of deafness to raise all of that money, find a physician and network of care, and have the surgery. Parents were taking out second mortgages. It was a very bad situation. At the same time, the post-care options were greatly lacking. Clinical education had not caught up to device manufacture.

I was seeing situations where parents raised all that money, had the surgery, and the child never responded well so the device was abandoned and all was for naught. Deaf parents has a particularly hard time with the process, as many in the deaf community viewed the surgery as audist, a pejorative way of saying that deaf children were not good enough. This was very disturbing to deaf parents who wished to explore technology for their child, as they were suddenly caught between two cultures.

HATECH was originally founded simply to raise funds to help individual families. But over the first few years it became very clear to us that we were  going to have to grow this into legislative advocacy so that insurance companies would start to pay. I spent enormous amounts of time with lobbyists. Years later it became clear that we needed to also help to bridge hearing and non-hearing communities, and our third and final outgrowth was to open a lab for clinical research on device efficacy and also on the possibility of regrowing ear cilia. The latter is coming to fruition in labs all over the world, and will eventually lead to the natural regrowth of hearing with no devices or surgeries for many people.

Back in 1998 I was working for MCI Telecommunications and it was a brilliant think tank, you had people like Vint Cerf working there. It was outstanding. But I began to question the big picture of telecommunications. We were coming up with really interesting ideas to help people communicate better, but I felt something was missing in my heart.

Then one day I was on the subway in NYC and a deaf person was panhandling the crowd but with a good approach. He was asking for $1.00 and in exchange for that you received a business card that taught you six ASL words. So, you actually received something for your $1.00 donation. Yet it troubled me that he was making his living this way. How much could he possibly earn in one day? $40.00, maybe? And with a loss of the dignity that we all deserve.

I realized then that the people who would really benefit most from improved communication tools were not corporate clients but deaf individuals and associations. By coincidence about a week later– in March of 1998– I saw on television that there was unrest at the premier deaf/hearing impaired University, Gallaudet. The students were protesting the Board of Directors and President, who were a predominantly hearing group.

Quite impulsively I boarded an Amtrak train to DC and helped out as a hearing volunteer to mediate the unrest. No one questioned my credentials (good thing, as I had none) and I simply jumped in, picking up rudimentary ASL and, in this pre-data-device age, doing a lot of writing on yellow pads. By week’s end I knew that my future had found me.

Simply put, experiencing a person hear for the first time. Two years ago, the Huffington Post compiled personal videos of cochlear implant activations, and I recommend viewing this:

2015/02/10/people-hear-for-first-time-video_n_6646594.html

Time ticking like a heartbeat, Fighting the clock. We live in a world where everyone wants everything smarter, faster, better, less intrusive, and we want it now. Every day, approximately 10,000 baby boomers retire. Fastest growing group in the US. As they age and their hearing starts to decline from all the rock concerts and worksites from decades ago, they want peak performance with minimal surgical intervention. And each year 2 to 3 of every 1000 babies born are deaf. Not all parents are interested in intervention, but those who are will want early intervention and the best technology. The bar keeps raising.

To educate and be educated on the evolving field of bioethics, which is the confluence of biology, medicine, ethics, philosophy and law.

In short, just because we can do something, should we?

There are tremendous ethical issues in health care, health science and health policy. As a society we have more questions to answer with each new technological leap, and I want to be someone asking and answering those questions.

To be flexible, and to never stop learning. At 50 I am still taking ASL courses at a local college in San Diego, Mesa College. I am not only older than the other students, I am older than the teachers. Who cares?

To anyone looking for career advice I always say, never stop learning. Start anywhere. Start for free. Start today. Watch one less episode of The Voice and take a MOOC- a Massive Open Online Course-  in that timeframe. These courses are held by Harvard and MIT in a variety of interests and are completely free. You never know what ideas may come to you as a result.

To disrupt and stay driven in that pursuit. Sometimes easier said than done. I have had a lot of hearing parents thank me for aiding them, and I have had many deaf parents condemn me for seeking change. In business I firmly believe that if everyone agrees with you, you have a real problem. You are ineffective and/or surrounded by the wrong people. You hear the word “disruptive” quite a bit in boardrooms today, as in disruptive technology. And that is what you need to be– Disruptive. Lyft was disruptive, Amazon was disruptive, 3D printing was disruptive. If you see a model that does not work, break it.

I am blessed to live in La Jolla, where we have an amazing ecosystem. We have some of the top research labs in the world, including Salk and Sanford Burnham, and we have year round sunshine. So after work you can usually find me at the beach.

I recommend the author Atul Gawande, MD. He has written a series of books on the crossroads of medicine and ethics. He shows us what its like to be a doctor and a human being. From a website perspective I am always following TED, TEDx and TEDMED. I was very fortunate to be chosen as a 2017 Research Scholar of TEDMED, and this is a great experience.

TEDTalks are fascinating, as you witness the gamut of the human experience. If anyone wants to view a great Talk, check out Stella Young’s on “Disability as Inspiration Porn”. She cuts to the heart of how society can inadvertently fail by bestowing honors on the disabled that they don’t want or need when they just want to be living their lives. A fresh perspective.