by Dan Spoone
This issue of the E-Forum focuses on exercise and good health. Both of these areas are very important to my family and our community. My wife, Leslie, has devoted her life’s work to the pursuit of physical fitness. As a blind woman, she has had to overcome the barriers of being told that a blind woman could not be an aerobics instructor and a personal trainer. How could a blind woman lead a class of sighted people in step aerobics, kickboxing, cycling, water aerobics, Pilates and yoga? Leslie did it. It was not easy, but she never gave up. The biggest challenge was the transportation hurdle to move from gym to gym to meet her classes. Finally, she gained enough experience and confidence to open her own women’s fitness center, which she owned and operated for five years. These experiences have brought her a group of lifelong friends that were clients at her gym. Leslie’s journey is similar to your own stories. It required persistence, fighting discrimination, turning skeptics into believers and winning the confidence of clients and employers. Having to prove herself over and over again to each new person she met that doubted her capabilities. I’m very proud of Leslie’s accomplishments, but it should not be this hard.
Leslie has found a new exercise family in the ACB Community. She teaches exercise classes five days a week from Monday through Friday afternoons. I hear the smile in her voice each afternoon as she welcomes ACB members and friends to her yoga, resistance, and my favorite, the Friday Happy Hour Cardio classes. She has finally found a group of clients that are excited to receive instruction from a blind aerobics instructor. Leslie’s normal technique for instruction has always been to be very hands-on with her clients, making up for her lack of vision by using her hands to lead her clients through the proper routines. These ACB Community classes are 100% verbal, so she must describe the poses with directional cues. Put your hands at 11:00 and 2:00. Extend your arms straight above your head, reaching for the stars with your palms facing each other, while placing your feet shoulder width apart with your left foot at a 45-degree angle. These descriptions continue for an hour each day with lots of laughs, some yelling above the class noise and lots of questions and clarifications. She’s met so many new friends. The official class each day is usually followed up with more one-on-one instruction. Wow, I’m exhausted, and I’m only listening from the next room! Exercise is so very important to good health. So, as Leslie would say, “Please take 30 minutes each day to go for a walk, do some stretches and get your heart pumping.”
The other major component of good health is good accessible health care. Accessible is the most important word in the previous sentence. The digital revolution has changed our lives in so many ways over the past 10 years. The health care industry has been profoundly impacted by this digital transformation. We now encounter digital accessibility issues with self-service kiosks at medical labs or hospitals, with online medical appointments and with digital heart monitors or continuous glucose monitors. These interactions with the medical profession can be terribly frustrating for our community. Most digital medical devices are not accessible.
Such inaccessibility can no longer be blamed on the cost or capability of technology. Almost everything we own talks to us. We have smart houses, fully accessible smartphones and personal digital assistants, all with wonderful voices. So why can’t my heart monitor be accessible?
Last month my cardiologist prescribed a three-week heart monitor for me to check out my heart rhythm. The monitor was a really cool setup. It had three major components. There was an adhesive electronic strip that had an entry port for a remote control. The strip had to be replaced every seven days. The second component was a one-inch by two-inch remote control that had to be charged every two days. The third component was a Samsung smartphone with a charger for both the phone and the remote control. The phone had to be charged each night. It was Bluetooth enabled and the remote control sent a continuous signal to the phone, which communicated to a data monitoring center in Dallas, Texas. The Samsung smartphone provided a series of reports. These included a set of green lights letting you know that the remote control was receiving a good signal from my heart and transmitting it to the smartphone that was passing the information to the data center in Dallas. How cool!
Unfortunately, the Samsung smartphone was not accessible. I could not see any alerts or fill out any reports on my symptoms. Why not? We all know that the technical capability is available.
My fear is that this lack of accessibility to the latest advancements will only get worse as the digital footprint in health care expands. Our blind and low vision community is going to be left behind if we do not act quickly. We must demand equal access to digital health care equipment. Delay will impact our health. We are entitled to the same independent monitoring of our own health as sighted patients.
This is why the ACB “Get Up and Get Moving” campaign is so important. We must encourage our community to “Get Moving” with exercise and good nutrition. We must also encourage our community to “Get Moving” with the advocacy efforts that are required to ensure that digital health care equipment meets the full accessibility needed for us to independently monitor our health. Let’s all “Get Up and Get Moving.” Our lives depend on it!