The Power of Advocacy: How Two Medical Conferences Empowered a Family with Disabilities


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Alice Brouhard was no stranger to medical conferences. As a registered nurse, she’d attended them for years. But she never imagined her family’s life could be so deeply affected by not just one conference, but two — one that she attended and the other that she founded and organized.

In 2005, Brouhard attended the Coleman Conference for Cognitive Disabilities & Technology, interested in its focus on software for people with cognitive disabilities. Her hope was that she might gain some information to help her adult daughter Kara live independently. When she was five years old, Kara fell during a family ski trip and was hit by an out-of-control skier, whose ski shattered her skull. She spent the next two months in a coma, undergoing multiple brain surgeries; when she woke up, her left side was paralyzed and her vision was so compromised that she was legally blind. But she said, “Hi, Dad,” which gave her parents tremendous hope for her cognitive potential.

After much physical therapy, she was able to walk, attend school, and participate in Girl Scouts. But the part of her brain that initiates activity had been damaged, and she needed explicit verbal prompts to do basic things like prepare a meal and take a shower.

Alice and her husband, Jim, were both trained as nurses, and were in charge of her care. But they had hopes for her to live independently someday.

At the Coleman Conference, Alice learned about an early computerized system to provide these spoken prompts, at a cost of about $7,000. It did the trick; six months later, then-26-year-old Kara moved to her own small house six blocks away from her parents. She cooked for herself, took care of a pet, and to her parents’ wry amusement, even argued with the voice telling her what to do. “She was living an independent life, and it was just huge,” Alice Brouhard said. “When she first started living there, I’d walk away at night and worry if she was going to be okay, and she was. And now, I can know that in the future when we’re gone, she’ll be fine.”

THERE’S AN APP FOR THAT

Sharing Her Story Alice Brouhard spoke at TEDxRapid City last year about the power of an app and the power of advocacy.

In 2012, Jim was diagnosed with a brain tumor, and the surgery left him similarly in need of reminders. Alice googled “best reminder apps” and discovered Aida Reminder. It allowed users to record prompts on an iPad in a fraction of the time compared to the old system they’d used, and at a micro-fraction of the cost: just 99 cents. It had the added benefit of recording the prompts in the user’s own voice. “When it was someone else telling her what to do, Kara wouldn’t listen or she’d argue with it,” Alice said. “This is her inner voice, for her.”

But within six months, Apple updated its operating system, and Aida no longer ran automatically; Kara would have to open it manually to request the prompts, which defeated the purpose. Brouhard emailed and wrote letters to Apple urging them to make a fix, but never heard back. Another update came along, and then another; she held on to iOS 6 and jerry-rigged the system, so Kara could continue to use it.

In 2014, Brouhard worked with four other women to found Families at the Forefront of Technology (FFT), a grass-roots organization committed to finding solutions for people with disabilities. That fall, they held their first conference in Snowmass, Colorado, where Brouhard spoke about how Aida had been “a game changer” for people with memory disabilities. One attendee urged her to start a Change.org petition to draw Apple’s attention to the problem, and offered help on the social-media front from her agency Trinity Services, a support organization for people with disabilities. Another attendee, who worked in the technology industry, advised Brouhard that she’d need tens of thousands of signatures to make Apple take note.

[pullquote]And now, I can know that in the future when we’re gone, she’ll be fine.[/pullquote]

Brouhard circulated the petition, and even picketed outside an Apple store in Denver with fellow supporters, where they were invited inside to continue their protest after they told the manager their story. After several months, the petition had received 1,200 signatures, but the online comments were vivid. “People wrote things like, ‘Come on Apple, this is simple for you,’” Brouhard said, “and ‘It’s a no-brainer and you can change my husband’s life.’ That totally, totally came from the conference, which was great.”

POWERFULLY IN PERSON

In 2015, Apple emailed Brouhard to open a dialogue. And just a month later, after several phone conversations, Apple restored the full functionality of Aida. When the app came back up for the first time, it trumpeted across the screen: “Voice reminders are back… Thanks to Alice and Kara!”

This past June, FFT hosted its third conference, and hopes to continue annually with the help of grants. “The power of conferences, people talk about it all the time — it’s the networking. You never know where it’s going to take you,” Brouhard said. “People really make connections; they come away from our conference knowing what to do and where to go. We know this works.”