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MDRC cultivates disability pride and strengthens the disability movement by recognizing disability as a natural and beautiful part of human diversity while collaborating to dismantle all forms of oppression.

Gwen posing and smiling Gwen, like many 9 year old girls, is fearless. She skateboards, rides a scooter, plays soccer, and performs back bends with ease. She is happy and ready to take on the world. Diagnosed with Holt-Oram Syndrome, Gwen has cardiac issues and skeletal differences in her upper limbs. She has three fingers on one hand that extend away from her body and four fingers on the other hand that extend inward toward her body, and has become adept at using her body and assistive technology in creative ways to become independent.

Her parents have supported her and encouraged her to be independent in any way that works for her no matter how unconventional. For example, they broke a plastic spoon from the Dairy Queen and glued it back together at an angle so that she could feed herself. They purchased a rocker knife that Gwen uses with the chin to cut up her food and help prepare meals. In addition, between the ages of 5 and 6 they involved her in occupational therapy (OT). While OT was helpful, many of the AT devices the family was shown were designed for adults, not children, and not for people who have no thumbs or wrist movement, like Gwen. Her therapy focused mainly upon arthritis issues, not joint issues.

modified red plastic spoons broken and reattached at a 45 degree angleFortunately, the family found their way to Jenell Williams at Disability Network Oakland/Macomb, a Center for Independent Living. Jenell is an Independent Living Specialist, and with training and funding from the Michigan Assistive Technology Program (MATP), was able to work with Gwen and her family to demonstrate AT devices that were targeted specifically for her needs.

During their time together, Jenell demonstrated various items to help with community living from the "small Changes, Big Differences" kit, including the One Touch can opener. The family could see that this particular can opener, designed for people with limited dexterity, would allow Gwen to open cans independently and add to her already growing independence with feeding and cooking . Jenell also learned that Gwen had the most difficulty with toileting due to her limited reach, and demonstrated the Bottom Buddy, a device that holds a wipe and extends the reach in a variety of directions for personal hygiene. Her parents are looking into a bidet as she gets older, but it seemed like a good fit in the meantime, and for this reason they purchased both the One Touch can opener and the Bottom Buddy.

As Gwen begins to grow in height her arms will grow in length as well. She looks forward to pursing her other interests that include gymnastics, cartwheels, riding a bike and swimming. She believes that as long as things are within her reach, anything is possible. Here is to assistive technology…for putting life within arm's reach!

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