Kaileen lost her voice. Technology lets her be heard.
Millions of Canadians live with at least one disability. Powered by the country’s world-leading networks, a customized program now gives them access to the assistive technology they need to independently connect to the digital world.
Three words -- Born This Way -- tattooed in dark ink along Kaileen Selig’s slender right arm say a lot about who she is and how she wants to be seen in the world.
The message, in part, pays homage to Lady Gaga, Kaileen’s favourite artist and muse to her own creative expression as an accomplished mouth painter.
But it’s hard to miss their deeper significance given Kaileen was born with an extremely rare neuromuscular condition known as Charcot-Marie Tooth Type 2 (or CMT Type 2). Since she was a child, she’s faced a series of physical challenges stemming from the progressive loss of strength and range of motion. At 27, she is unable to walk, hold a pen, use a smartphone, or breathe easily without the aid of a ventilation mask over her nose.
To Kaileen, though, all that was manageable. She graduated from college, moved in with her boyfriend, and landed a job she enjoyed in the technology field. It was only when she lost her voice -- her best and easiest form of independent communication -- her normally unshakeable positivity wavered.
“I love to talk,” she says in a strained whisper that leaves her exhausted. “My best friend and I used to talk on the phone for hours.”
It’s why, when the Neil Squire Society recently introduced her to an innovative piece of assistive technology that makes it possible for her to reclaim her voice, albeit in a different way, she embraced it without hesitation.
The LipSync is a deceptively simple-looking device that enables people, like Kaileen, who have limited use of their hands and fingers to independently operate their smartphone or tablet. Through the device, users control a mouse cursor and tap keys on the touchscreen by either sipping or blowing into a mouth-operated joystick.
The device is one of several assistive-tech innovations made available through Neil Squire, a national nonprofit that works with people with disabilities.
To ensure even more Canadians can get the access they need to assistive technology and connection to the nation’s world-leading wireless networks, the organization recently partnered with TELUS to launch Assistive Tech for Good.
The program is now available in British Columbia and Alberta. It is designed to help people with disabilities who require a customized solution involving assistive technology to independently access their TELUS smartphone or tablet. The program provides specialized assistance with selecting the right assistive technology, such as the LipSync, compatible smartphone or tablet, and free set-up and training. TELUS also provides financial assistance to those in financial need to ensure full program inclusion.
In-store customer service representatives can also help TELUS customers with less severe disabilities by discussing built-in accessibility features on digital devices, and refer them to the Assistive Tech for Good program if necessary.
“It’s hard to put into words the kind of world this opens up to Canadians with disabilities when they have this kind of accessibility,” says Gary Birch, executive director of Neil Squire. “In some ways it puts them on a level playing field with every other Canadian who can use digital technology and doesn’t think twice about it.”
Kaileen’s LipSync, encased in purple plastic in keeping with her preference for bright colours, attaches to a Samsung phone and tablet and enables her to do all the things she loves best: binging on Netflix (anything creepy or funny), texting with friends and family, and posting photos of her original acrylic and watercolour artworks to Instagram. That last point is a particularly big deal to Kaileen, whose passion for mouth painting is now taking shape as a small business.
“I wasn’t planning on selling my work, but after I sold three paintings, I realized I could use the money to buy more supplies and I have had so much fun. It made me realize this could be my next career,” she says.
The LipSync also made it possible for Kaileen to apply for -- and win -- a full scholarship to attend art school courtesy of the Association of Mouth and Foot Painting Artists of the World. Additionally, adaptations to the device made by the Neil Squire Society mean she can partake in another of her great passions: video gaming.
“The assistive technology has been life-changing for me, ” she says.
Perhaps most satisfying of all, though, with each message she shares, Kaileen’s spreading the word on what’s possible to those who face physical barriers to the digital world.
“When I lost my voice, I was so upset because I thought I couldn’t be heard. It was so tiring,” she says. “Now, the LipSync allows me to use my voice in a different way. I am honestly quite grateful.”