The outpouring of emotion for the recent passing of tech genius, Steve Jobs, is validation of how much the magic of digital devices has become a central part of our daily lives. Phones and tablets are lifestyle managers, offering apps that help with organization, planning for dinner or checking one's budget. Jobs will be remembered as a central inspiration for the digital age, but how people continue to make creative use of digital technologies is the post-Jobs story.
Bridging Apps is a innovative web community of parents and professionals who seek to share information on ways to use educational/therapy apps on the latest technology devices—iPad, iPhone, iPod, Android and others—to support developmental learning goals for people with disabilities.
Throughout the year, I come across many dedicated non-profits doing important advocacy work for health and wellness. Among my favorites: The American Brain Tumor Association, Blissful Bedrooms, and Post Polio Health International. Donations to such organizations fund research to find cures, provide adaptive
rehabilitative equipment to those who do have not the resources, or sponsor projects to improve quality of life for young persons with disabilities.
Each October, Post-Polio Health International hosts the We’re still here! campaign, to raise public awareness of both the successes and the current health needs of polio survivors. In the spring of 2009, I attended the New York premiere of The Polio Crusade, a PBS documentary directed by Sara Colt for the American Experience. If you are from that generation, the story of polio is not an unfamiliar one. The film catalogs the race for a cure and the public health campaign that resulted, inspired by Franklin. D Roosevelt. Watching the footage of the beginnings of polio history was compelling, but the film also highlighted what is less known to the wider public—the story of polio survivors estimated at 750,000 in the U.S. today.
Each year in the U.S., 765,000 American youths, about one every 40 seconds, visit an emergency room for a traumatic brain injury (TBI). Compounding this complex diagnosis, families have to navigate an
often-frustrating maze to access health care or discover the lack thereof. “Whether you are prince or a pauper, you face the same struggle across the U.S.,” says Patrick Donohue, founder of The Sarah Jane Brain Project (SJBP).
Donahue knows the challenges parents face firsthand. The Sara Jane Brain Project is named after his daughter, Sarah Jane, who at 5 days old was shaken by her baby nurse, breaking four ribs and both collarbones and resulting in severe pediatric acquired brain injury (PABI). From the outset, Donahue became harshly aware of what families of children with brain injuries contend with—an uncoordinated system of care, a medical issue with minimal research dollars, and haphazard treatment options.
“I wish to be, I wish to go, I wish to meet, I wish to have.” These are the magical questions in the wish-making process that have guided the granting of more than 1,700 wishes of children with progressive, degenerative, or malignant life-threatening medical conditions by Hudson Valley Chapter of the Make-a-Wish Foundation . I recently had the privilege of attending the annual Wish Gala, and took few moments to speak with Denise D'Amico, Vice President of Program services, on the work of the Foundation.
[I had the privilege of speaking with Judy Goldberg back in 2011. Passionate with an advocacy spirit in every sense, Judy cared deeply about empowering young women. Judy passed away on November 5, 2013. It was an honor to know her and this post is in memoriam to her work and to the continuing work of IWD...]
The Initiative for Women with Disabilities (IWD), Elly and Steve Hammerman Health and Wellness Center, located at the NYU Hospital for Join Diseases, is a comprehensive health care facility designed to empower women and adolescent girls with disability. IWD is fully equipped with an accessible GYN table, and scale, and it offers a variety of wellness education resources, “We teach the wellness aspects of disability - how to sustain a healthy life style with nutrition, acupuncture, stress management – not only to help to minimize hospitalizations, but also to bounce back easier after relapse,” says Judith Goldberg, director of the center. The wellness movement is a growing one; health care centers around the U.S. are each defining how this approach would translate for their patients.
The world of hand control driving technology for persons with
disabilities is not a widely known area of accessibility. Three years ago, when I transitioned to hand controls, I embarked on a new learning curve that I had little familiarity with. I reached out to my former teacher, Beth Rolland, an occupational therapist, driver rehabilitation specialist, and tri-athlete at Kessler Institute
for Rehabilitation, to gather advice for people who may be thinking of taking this step.
How people cope and subsequently learn to live well while dealing with a progressive medical condition is a central theme in my health
advocacy writing. Later this year, I will be interviewing Deshae Lott, PhD, a prolific writer and health care advocate. She has written widely on subjects related to ventilator dependent living, spirituality, and health care access for persons with disabilities.
In the following essay, "No Way Out But In: Responding to Chaos Positively with Forgiveness and Grief", Deshae walks the reader through the challenges of a week in her life of living with Limb Girdle Muscular Dystrophy. In this piece, Deshae shares her own acquired model of coping, “Whether much is going awry or right, I restore my inner serenity and well-being each day by using prayer and meditation, and processing grief and forgiving.
No day seems to pass without my using these mental resources,” she states. Her mission is to offer encouragement to those who struggle with the emotional stresses of complex health concerns.
Janne Kouri, President and Founder of NextStep Fitness, a state-of-the-art specialized gym facility in Lawndale, California, is an advocate with a focused dream: “…to expand NextStep Fitness in communities of
need throughout the U.S., so people living with paralysis or disability would have access to community-based fitness options. This is a nationwide problem, and it needs to be addressed,” he says.
This mission is inspired by Kouri’s own journey. In 2006, while playing beach volleyball with friends, Kouri took a break and dove into the water to cool off; he hit his head on a sandbar and was instantly paralyzed from the neck down. He then began a challenging rehabilitation for his spinal cord injury at Fraizer Rehab Institute in Louisville, Kentucky. His background as an avid exerciser and former college football athlete at Georgetown University equipped him with a unique sensibility for tackling the demands of his recovery.
Claudia Glaser-Mussen, the sassy singer-accordionist of the Grammy- nominated children's rock band, Brady Rymer and The Little Band That Could, has a lot to say about her muse, “I can feel my mother's presence on stage, when I perform; she inspires me and I'm able to convey that energy to the audience.” A thread of music runs through Glaser-Mussen’s life, "I grew up in a home where music was a part of our experience,” she says. Music never became more important for Glaser-Mussen than it did in the final stages of her mother’s life, when she was coping with Alzheimer’s disease. In this telling, WNYC radio interview, Opera Mom, Glaser-Mussen and her brother, violinist Matt Glaser, reflected on the role that music had in the care of their mother, Jeanette Glaser-Taubin, a professional opera singer.
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