By Paul Nyhan and Aimee Riordan
Alejandra Tristan was an active kid in the usual ways: running, jumping, tumbling in gymnastics, dancing ballet, until she turned nine and began dislocating her joints during these activities. First her left knee, then her right, then her shoulders and ultimately her fingers started popping out of place.
After years of misdiagnosis and some doctors telling her she was crazy, Tristan finally found out what was wrong. She has a rare genetic disorder, Ehlers-Danlos syndrome (EDS), which makes her joints fragile and loose. Too often her days end painfully by noon, cut short by dislocations that sometimes keep her in bed for weeks.
As she grew older, Tristan had trouble doing the typical things necessary for school and keeping up with friends. The simple act of typing on a laptop could pop her shoulder, wrist or finger out of its joint, making it difficult to connect through social media.
To prevent dislocations, Tristan, now 16, placed splints on her fingers, but this made it virtually impossible to use a mouse or computer. A laptop that could have connected her to an increasingly digital world was often of little use. Rather than being a lifeline to the world, technology was a painful reminder of her disorder.
She sometimes felt cut-off, different and directionless.
Then Tristan discovered Windows 8. With its customizable design, enhanced accessibility features and touchscreen, Windows 8 is helping Tristan transform both her learning and her life, allowing her to do more.
With Windows 8, Tristan, who starts her junior year in high school this fall, has reclaimed her studies, her friends and her voice. She writes research papers by gently touching the on-screen keyboard and dictates notes using speech recognition software. When she works on vocabulary words, she uses digital notecards.
“It gave me my school and friends back,” Tristan says. “It gave me the ability to do my schoolwork, but more than that it helped me enjoy school again.”
It also reconnected Tristan, who is homeschooled because of her condition, with the academic and social worlds of high school.
“The first thing I check, like any teenager, is Facebook. I chat with friends for a while. Then I open my textbooks,” said Tristan. “It has made it so much easier to have a conversation with someone and still be able to continue that conversation with the touchscreen.”
She also uses Skype to connect with friends or get help from her tutors when she can’t leave the house.
“I love Skype,” Tristan says. “Through video chatting I get to go ‘outside.’”
Rob Sinclair, Microsoft’s chief accessibility officer, says Tristan’s story “hits the core essence of what Microsoft is trying to do philosophically by developing people-centric experiences.”
“It’s really about her,” Sinclair continues. “It’s about us supporting the way she wants to interact with technology to do her homework and communicate with her friends. It’s a big focus of ours, as a company, to give the individual that flexibility.”
Another important part about Tristan’s story, Sinclair adds, is that it challenges assumptions.
“There’s a lot of talk about natural user interfaces. But she explains clearly why it’s so important not to make assumptions about our customers and the way real people use technology in this world,” he says. “Her experience highlights the importance of multi-modal interfaces and the fact that Windows allows her to choose speech input, touch input or mouse input.”
Like most high school students, Tristan now regularly ends her school day well into the evening, something she says she can only do because of Windows 8.
“I wouldn’t be able to go all day on my computer, and socialize, and get the word out there on EDS through Twitter. Or, I would have to stop around 12 o’clock because I would no longer be able to move my upper body because of pain,” Tristan explains.
Windows 8 is also empowering Tristan to resume some of her favorite hobbies, such as painting. She loves art, but pushing a brush on a canvas could dislocate her fingers. Then she discovered the Microsoft Fresh Paint program and realized she could paint on a screen by applying little pressure with her digital brush.
Windows 8 also empowered Tristan in the EDS community. Instead of being a victim of the disorder, she can now engage and educate others. With Microsoft technology supporting her, Tristan is finding her voice to speak about EDS and help others affected by it to chart their own paths beyond merely enduring the condition to realizing their dreams.
Like a lot of incoming high school juniors, Tristan is getting ready to apply to college and continue her dream of raising awareness for the EDS community. And Windows 8 can help her get there.
“It is just so easy to use. Everything was there and set up. It’s super intuitive,” Tristan says. ”I am forever grateful.”
Dressed in black and white, Tristan likens herself to the animal embraced as the mascot of the EDS community — the zebra.
“When you hear hooves think, zebra, not horses. It means look outside of the box,” she says. “There’s always that one thing that’s a little bit different than what you expect. [People with EDS] are that difference, that unique thing…in a big crowd of people.”
Tristan’s story is the second in a Microsoft News Center series about the transformative power of technology for people with disabilities.
Paul Nyhan, is a staff writer with the Microsoft Accessibility Blog. Aimee Riordan is a staff writer with the Microsoft News Center.