A Brush With Greatness: A Farewell to Brooke Ellison

The best part of what I do is all of the diverse people I get to meet. Everyone I meet is better than me in something or another, and has something to teach me. This month I met a great one who taught me a lot.

A few weeks ago we lost Brooke Ellison, 45, a disability advocate who was a professor at Stony Brook University and VP of technology and innovation for United Spinal Association. She led an extraordinary life and I encourage you to watch this “TODAY” show profile. Along with her prominent career, she wrote a couple of books, one of which was made into a movie by Christopher Reeve; ran for the New York State Senate; and was a professional speaker and one of the first quadriplegics to graduate from Harvard University — all after being hit by a car and paralyzed from the neck down at age 11. Here is Brooke Ellison’s TED Talk: The Pillars of Hope.

Ellison and her mother, Jean, who aided her throughout the undergrad years.

I had the honor of speaking to her just before she passed. We talked for an interview on a few tech-related accessibility topics, subjects she had been working on her whole life. We had difficulty scheduling it, but I knew she was a busy person and I’m not reading anything more into it. However, once we finally got down to it, she poured out the information. In her mind was coiled a nonstop string of knowledge that unspooled into my ears. My mouthstick was throwing sparks trying to keep up on my keyboard. This is why I record interviews. It’s not just to get the quotes right — it is being able to unravel all of the points and concepts skipping past my baby-smooth brain. Tape, don’t fail me now!

Birds of a feather.

We gabbed almost 17 minutes, transferring a ton of info and sharing a few laughs. That was the best thing, that we shared a genuine rapport. We both had high-level disabilities, and I could tell she appreciated my questions that could only come from someone actually living the life. I was truly gleeful, not only to have gleaned from her exactly the info I needed to cap off my story, but also to have had a real conversation with such an authority on things that make my and many other’s lives much better.

One thing we really got into was the MouthPad, a revolutionary new device that is worn like a retainer in the mouth, to control computers, phones and other Bluetooth devices. It is a touchpad for your tongue that is worn on the palate of the mouth.

MouthPad.

The MouthPad will have uses for people from all walks of life, but in the testing phases the developer, San Francisco-based Augmental, has included many people with disabilities, including Ellison. She was the perfect person to speak to on the MouthPad too, because for years she used a forerunner of the MouthPad called the Tongue Touch Keypad.

TTK.

Developed some 15 years ago, the TTK was also worn in the mouth and had buttons like a remote control that could be pressed by tongue. Ellison used it to control her wheelchair, lights and environmental controls. However, the developer went out of business in 2011 and the aging device was “on its last legs,” she said. With time, the infrared TTK grew more and more out-of-date in a Bluetooth-heavy era.

“I felt in a lot of ways that technology was kind of passing [me] by,” she said. “My cell phone was basically like a paperweight.” How I could relate to that last comment! When I finally found a cell device I could use, it was 2022. I felt like Rip Van Cellphone.

Ellison was very excited about the MouthPad, which she thought will dramatically expand disability access across many different areas in society. “The promise is so much greater and the company that developed this technology is thinking much more broadly than the TTK ever did. … I’m really excited to see how this technology is going to continue to be integrated into many different aspects of our lives. I don’t think the limit is going to be computers (or) handheld devices,” she said. “I’m really excited to see how everything unfolds.” Ellison contributed for years on the development of the MouthPad with Augmental, and finally got a device of her own only a week before our interview. No wonder she was excited. With her unique history, she could experience the progress that’s been made on the tip of her tongue.

Two days later came word from my editor that she had passed. He and I and the entire United Spinal community were shocked. If she was ailing in some way when I talked to her, I had no idea and she gave no indication. I felt sad all day long that I didn’t get to know her better, and a lot of sympathy for those lucky enough to know her. But looking back, I’m grateful she granted me that opportunity to talk together. It was a brush with greatness. It's natural, then, to dedicate my story to Brooke. It will appear in New Mobility magazine this summer.