I met Ann about six months ago at her facility in east central Arkansas. She had just become a Be-X client and Tom asked if I’d check in on her from time to time to make sure the technology was working for her. I had to make sure she was practicing using the laser keyboard in order to reach her goals. Since I live in Little Rock it made sense for me to be her first line of technical support rather than have Tom’s folks drive halfway across the state.
Tom, Eryn, and I met to plan out a process of getting the technology installed, training her on how to use it, and then making sure she practices using it daily. As engineers, process is a pretty important concept for us. We understand steps, dependencies, decision points and feedback loops in the journey in reaching our goal. Unfortunately, the real world rarely works that way and the world of someone with a disability almost never works that way.
When we met with Ann we realized quickly that our plan was unworkable. She did not have experience using technology and consequently we would have to train her on the basics of the laser keyboard and the tablet. We also realized the staff of her facility needed training as well on the technology. We assumed all Millennials were tech-savvy and comfortable with using new devices. So, we spent a lot of time writing very detailed instructions for the staff on how to set it up, turn it on, run it, turn it off, and put it away. We also trained Ann on how to instruct the staff on what to do.
That’s what makes the work Be Extraordinary, well, extraordinary. Everything has to be customized. Even off-the-shelf equipment has to be tweaked to fit a certain situation or condition. And there’s no real process to follow. Much of it is giving the client’s environmental and their physical abilities, which often change during the day.
But if Be-X doesn’t do it, who will? I’ve been in Ann’s facility six or eight times over the past six months and I’ve never seen another organization in there working with a resident to help them communicate. You can’t blame them for not trying. It is frustrating, time consuming, and expensive. It doesn’t “scale” in the sense that you can’t use what you do for one resident as a template for many others. In marketing we call this situation a segment of one. It doesn’t make economic sense. But then often the payoff from Be-X comes in different forms.
Ann has two primary goals: read her Bible by herself and be able to write letters to her brother who lives on the West Coast. We were successful in getting her set up to be as independent as possible to read her Bible, although she still needed someone to set up the equipment and put it away when she was finished. Eryn came up for Ann to navigate her through the books and chapters herself, which is a big deal since she is now less dependent on the staff for help.
Writing her brother was a big deal, too. He is her only sibling and she has no other family around. Over the course of two sessions Ann was able to write three or four sentence letters to her brother, which we printed and the staff mailed. She was disappointed when she didn’t hear back from him but that didn’t stop her from wanting to write more.
The Friday before Halloween I showed up to see how she was doing and help Eryn install some new equipment. Ann had a surprise visitor in her room: her brother. He had the staff keep the secret from Ann until he walked in the door. Ann was beaming and talking non-stop. She was so excited to see him and to be able to spend time with him. He even took her to see a movie in town.
Did her letters play a part in his unannounced visit? I’d like to think so. Be-X can justifiably be proud that we had a role in that. But the bigger payoff is the effect on the brother. He asked Eryn and me several times about Be-X and why we do what we do. He knows now that 3,000 miles away there’s an organization that cares about his sister’s life and dignity. That’s the payoff. That’s why Be-X does what it does.