Spina Bifida = "Split Spine"

Spina bifida is a condition in which a baby's spinal column didn't close completely (please refer to my April 29 post titled "Spotlight: Chris Douglas" to read about a sled hockey player with spina bifida). As the most common permanently disabling birth defect in the United States, spina bifida may cause impaired mobility, gastrointestinal issues, and other symptoms. The four-day Spina Bifida National Conference in Minneapolis, Minnesota, ended yesterday. For more information, go to http://spinabifidaassociation.org/.

 

Image obtained from pgqb.blogspot.com

Hiking the Appalachian Trail

Stacey Kozel, a 41-year-old woman who is paralyzed from the chest down due to lupus, is attempting to hike the Appalachian Trail by herself. Thanks to computer-generated leg supports, Kozel of Medina, Ohio, has gone through almost half of the 2,190-mile trail from Maine to Georgia since March 24. She isn't letting her disability stop her from achieving her goal. For more details on this story, go to http://www.today.com/health/woman-who-paralyzed-hikes-appalachian-trail-alone-t99811.

"Finding Dory": An Exploration of Disability

Released in the United States last Friday, Finding Dory (the sequel to the 2003 Pixar film Finding Nemo) focuses on the Pacific regal blue tang fish Dory's journey to reunite with her parents. Dory has memory problems because of a developmental disability (a chronic condition due to mental or physical impairments); four of her friends (including Nemo) also have challenges. Displayed by its main character's positive attitude and persistence, Finding Dory has an uplifting message about disability. For more details on this story, go to http://www.usatoday.com/story/life/movies/2016/06/17/finding-dory-could-change-conversation-around-disabilities/85981674/.

Rock the Silence

Based in Palm Bay, Rock the Silence is an interdenominational, nonprofit ministry in which its members sign while singing, so the deaf can also enjoy their performances. The next concert, the first of three patriotic ones, will take place at 2:30 P.M. on Wednesday, June 22, at Anchor Care in Palm Bay. Rock the Silence also holds a prayer meeting from 1:00 to 2:00 P.M. on the third Tuesday of every month at the Franklin T. DeGroodt Memorial Library in Palm Bay. For more information about Rock the Silence, go to http://www.rockthesilence.net/.

Easterseals in D.C.

On Flag Day, about 200 staff members, volunteers, and clients of Easterseals (formerly Easter Seals) were in Washington, D.C., to speak with senators and representatives about supporting people with special needs and their loved ones. People were encouraged to send letters and emails to members of Congress about funding federal programs that help individuals with disabilities with employment, early childhood, caregiver, and other issues. Advocacy is just one of the ways Easterseals serves others. For more information, go to http://www.easterseals.com/.

One Year Later

It's hard to believe it has been one year since I created UnabASHed by Disability: The Blog. Even though I'm familiar with disability, I have learned a lot from the research I've done for this blog. One of my fellow Space Coast Writers' Guild Board members and I will be giving a presentation on blogging at our next meeting on Saturday (go to scwg.org for information on the Guild). It has been my pleasure to raise awareness and share information on disability issues with you, and I intend to continue doing so. Thank you for reading and commenting on my blog. Please stay tuned for future posts!

What Is Barth Syndrome?

Barth syndrome is a condition that results in weakness of muscles (especially the heart), neutropenia (a reduction in white blood cells that fight bacterial infections), and below average height and weight. The June 5 episode of Guy's Grocery Games on the Food Network showed Chef Justin Warner donating the money he won to Barth syndrome. The 8th International Barth Syndrome Scientific, Medical & Family Conference will be held July 18-23 in Clearwater. For more information about this condition, go to https://www.barthsyndrome.org/.

Remembering the Strength Coach

Author and motivational speaker Greg Smith, passed away last Thursday night. Known as the Strength Coach, Greg lived for more than 50 years with muscular dystrophy. I had the pleasure of meeting him at a youth disability conference in Orlando about ten years ago. Greg generously gave everyone in the audience a free copy of his memoir On a Roll: Reflections from America's Wheelchair Dude with the Winning Attitude, which eventually led to the publication of my own autobiography. To learn more about Greg Smith, a man who was truly "unabashed by disability," go to his website http://www.thestrengthcoach.com/.

A Preview of "Me Before You" (SPOILER ALERT)

The film Me Before You starring Emilia Clarke and Sam Claflin is being released in the United States today. The movie is about a rich British man named Will who became paralyzed in a car accident years ago. A young woman named Lou becomes Will's caregiver with whom he falls in love. However, Will decides to end his life by assisted suicide and bequeath his fortune to Lou. Disability activists don't approve of the pessimistic view of disability in Me Before You. For more on the movie's controversial message, go to https://www.theguardian.com/film/2016/jun/02/me-before-you-disabled-backlash-not-pitied.

McDonald's: Blind to Disability?

A blind man named Scott Magee from Metairie, Louisiana, recently filed a federal lawsuit against McDonald's for denying him service at the drive-thru window late one night last August. Magee believes the refusal of McDonald's to serve people without vehicles during late night hours discriminates against those unable to drive. McDonald's has to respond to the lawsuit by June 17. For more details on this story, go to http://www.nbcnews.com/news/us-news/blind-louisiana-man-sues-mcdonald-s-refusing-him-drive-thru-n583441.