MY STORY
Welcome to “My Story.” Below, you’ll find more on the enormous challenges and diverse accomplishments I have had in spite of those challenges, than you will have discovered in the brief introduction on my home page. You’ll also get a sense of the diverse ways I’ve found to circumvent the often very significant barriers in my life whenever I could, and learn a little about some of the amazing people who have been willing to assist me in achieving my goals and dreams.
The good that has come from giving and getting help in my life fires my determination to find ways to help other people do the kinds of great things that I, and so many others around me, have done - and all because we chose to step up and help each other maximize our potential while solving the challenging problems we all face in life.
A CHILDHOOD FILLED WITH CHALLENGES
I was born in Colorado Springs, Colorado on August 30, 1970. It became clear I had congenital cataracts when I was six weeks old. Surgery was performed, and although I could read large print and distinguish colors until I was about age eight, I was
never fully sighted.
I developed diabetes when I was one, possibly due to the effects of the cataract surgery on my immune system. Because my father was a type I diabetic, and other members of my family have developed type I diabetes as well, I probably would have gotten it in any case. Even so, some believe the disruption of my immune system caused by my cataract surgery may have sped the time at which my diabetes developed. In any case, largely due to the uncontrolled nature of my blood glucose when I was young, I had many seizures until about age five. I would spend three Christmases in a row in the hospital in diabetic coma. Comas due in no small part to the challenges that controlling my blood sugar posed for parents who had to figure out what was going on at a time when I was too little to easily communicate why I wasn’t feeling well.
Being blind is very difficult, having diabetes is also a major challenge. Having both at the same time is exponentially more problematic because there hasn’t been—and in many ways still isn’t—reliably safe and fully accessible technology for someone like me to do the blood glucose monitoring and insulin dosage measurements diabetics must do frequently in order to have any hope of controlling our diabetes. The existence of barriers like this—and many others such as the problems a blind person has in getting about independently, particularly in unfamiliar or disrupted environments—ignited my family's determination to give me the best possible chance at a full life.
Everyone around me became even more determined to give me as many experiences as possible because many of my doctors believed I would only live until about 21 due to the combination of diabetic challenges, seizures, and the inability to see well that I faced.
MY FAMILY AND OTHER PEOPLE WHO CHOSE TO DO SO, HELP ME RESPOND TO MY CHALLENGES
Because disabled people like me weren't fully guaranteed the right to a public education until the fall of 1975, my parents helped create a school to ensure my ability to learn, gain skills and grow. That school, called the Childrens’ School, is now part of the Colorado Springs School.
With the help of many around me, I also had to learn many skills you probably haven’t needed to—or at least have had relatively easy paths to gain because the world is constructed for sighted people. I had to learn braille along with how to write in print and make early attempts at learning cursive. I was learning to type at a very early age when most children didn’t touch a keyboard until at least junior high school. I had to get all of my books either brailled or read onto audio tapes; learn to navigate with a white cane; and be trained on how to move around in environments where signs and other navigational aids either weren’t accessible or weren’t reliably so—much as is often the case today in both the real and virtual worlds… all of this while needing to do well in my regular classwork.
Along with being determined to see me go to school, my parents believed deeply in the value of life experience. They engaged me in activities like swimming and piano lessons, skiing and camping. They also took me on numerous trips around the United States and later to Europe.
All of these things and so many more would not have been possible without the network of people we drew together whose importance to my life and future cannot be understated. I was so fortunate to have experts around me like the endocrinologist who helped set up my insulin plans for the trips to Europe that we made when I was in junior high and high school. I also had incredible people in my life like the teacher from another high school who agreed to take me with his student group to Washington, D.C. for Washington Close Up—a week long exploration of how the government works.
These people didn’t just come to us in neatly wrapped packages. My family and, in time I, had to find people like them who would choose to help us make my life, goals, and dreams possible. Searches that have required a great deal of time and energy—but which have brought huge rewards as well.
The need for control of my diabetes motivated me to develop the discipline, self-advocacy, and team building skills that have helped me become the first totally blind and diabetic person to graduate from Yale, Princeton and Harvard universities; a healthcare innovator; a world traveler; and much more.
ACCOMPLISHMENTS AWAY FROM HOME
While an undergraduate at Yale who ultimately earned a B.A. in Political Science as well as a letter of commendation from the faculty in the Department of Biology, I co-developed an early method to convert printed text into e-text that people with reading challenges could “read” using a computer and text-to-speech technology. The “Yale Text Scanning System” as it would be called could convert books and other printed matter into accessible text at least twice as fast as people reading onto audio tapes. The material it produced was also 10,000 times easier to store and search than audio tapes were. The “scanner” was, literally, essential to my academic competitiveness because the speech my computer could generate could be sped up to allow me to “read” text at more than 400 words a minute. This is much faster than most people can read to themselves—and three times faster than they can read material aloud.
In part, due to this invention, I was then able to earn a M.P.A. in Public Affairs at Princeton in 1995 followed by an A .M. in Genetics from Harvard in 1996. I then returned to Yale to earn an M.Phil. in Genetics and Ph.D. in Genetics, the Ph.D. being completed in 2004.
If you'd like to see if you read as fast as my screen reader does to me, please feel free to click here to access a four slide PowerPoint that will let you compare your reading speed with my screen reader, and a person reading a text I first created in 2014.
While in my various graduate programs, I worked with leaders at the National Institutes of Health to make its data and facilities more accessible to the blind. One way I did this was by becoming the lead non-sighted beta tester on an accessible version of the PubMed interface for the academic literature which was available from about 1999 to 2010. I also interacted with decision makers in the United States and Western Europe on policy surrounding use of personal genetic data, gene modified organisms, assisted reproduction, embryonic stem cell research and human cloning. I continue to write—and offer advice—on these topics today.
While at Yale for graduate school I would also become the first totally blind and diabetic person to complete a rollerblading marathon.
All of these accomplishments and many more would not have been possible without the hundreds of volunteers who assisted me with my medical routine and, in most cases, went with me to meals in university dining halls which were nearly as difficult for me to navigate alone as my medical protocol has been. Many help me overcome the barriers to easy and effective travel that I face. A similar network of paid helpers ran the volunteer system and made sure all my readings were available to me either via scanning or, later, downloads from the internet.
My ability to network with others and find win-win solutions to complex problems has made it possible for me to help launch the Wisconsin Institute for Discovery, a $150 million research center at the University of Wisconsin-Madison, create inexpensive programs that have helped hundreds of patients; teach thousands of health professions students about how people manage chronic health conditions at home and work—thereby helping them become more effective in their careers, help innumerable students move toward getting into college and health professions school; and mentor hundreds of current and future professionals working in fields ranging from scientific research and transportation policy, to business and professional athletics.
I have also come to greatly enjoy helping institutions make their websites and facilities accessible to the blind with a particular focus on how they can make their information and viewpoints as easy as possible to discover for people with all kinds of reading challenges.
WHY I HELP OTHER PEOPLE DO GREAT THINGS
I deeply believe in helping other people do great things. So many have done this for me. If I can help others, I feel I’m giving back and hopefully making the world a little better. This is the heart of the talks I give today and the reason for the networking I encourage people to do immediately after I’m done speaking. I also spend a lot of time helping people in my ever-growing network connect to each other—and to people I meet either at my talks or online via my social media and various email lists I follow. Whatever the method, bringing people together to help others feels so great and makes our world a little better and stronger. Please join me in this effort either at one of my talks or via connecting with me on social media or through the options I have on my website. If you would like to help me in my various projects or have something you think I can work on for your organization, please contact me.
