Category: Disability Awareness

National Spina Bifida Month is observed every year during October. According to the National Institutes of Neurological Disorders and Stroke, spina bifida “is the most common neural tube defect in the United States—affecting 1,500 to 2,000 of the more than 4 million babies born in the country each year.” To commemorate National Spina Bifida Month, we’ve compiled the following summary of information about this disorder. We at Enabling Devices hope that raising awareness about spina bifida will create a more accessible and supportive society for those who live with it.

Spina bifida (literally defined as cleft spine) is a condition that typically occurs in the first month of pregnancy when the fetus is just beginning to develop in the mother’s womb. In spina bifida, the fetus’s neural tube doesn’t close as it should. Though we don’t know exactly what causes spina bifida, most scientists believe it is due to a combination of genetic and environmental factors. Prenatal testing often reveals the presence of spina bifida and babies with the disorder usually undergo surgery to close the spine and minimize complications very soon after birth.

Depending on where the opening of the fetus’s spine is located and how big the opening is, the effects of spina bifida can range from mild to severe. NINDS identifies four types of spina bifida.

Occulta
The mildest form of spina bifida, occulta (hidden) spina bifida results in the malformation of one or more vertebrae. The malformation is covered by a layer of skin and the neural elements are not exposed. Affecting 10-20 percent of the general population, this type of spina bifida almost never causes symptoms or disability. In fact, individuals with occulta spina bifida many not know that they have it.

Closed neural tube defects
In this type of spina bifida, various spinal defects may exist but the neural elements are covered. Though some people with closed neural tube defects don’t experience significant problems, in others, it can cause partial paralysis, bladder and bowel dysfunction.

Meningocele
As defined by NINDS, in meningocele spina bifida, “spinal fluid and meninges protrude through an abnormal vertebral opening; the malformation contains no neural elements and may or may not be covered by a layer of skin,” In this type of spina bifida, symptoms range from mild or non-existent to complete paralysis.

Myelomeningocele
The most disabling form of spina bifida. myelomeningocele spina bifida “happens when parts of the spinal cord and nerves come through the open part of the spine,” according to the Spina Bifida Association. This causes damage to the nerves and partial or full paralysis below the location of the spinal opening. Myelomeningocele spina bifida may also cause a neurological condition known as Chiari II malformation. Chiari II causes compression of the spine and can lead to feeding, swallowing and breathing problems as well as hydrocephalus or spinal fluid accumulation on the brain. This can result in learning disabilities.

There is no cure for spina bifida but children with the disorder are typically of average intelligence and can lead robust and productive lives. Organizations like the Spina Bifida Association “are committed to helping people live longer healthier lives through research, advocacy, education and support.” Each October, the Spina Bifida Association sponsors Walk-n-Roll events across the country to raise money and awareness about the disorder. To locate in a Walk-n-Roll event in your area, visit SBA’s events page. Other ways to support people with spina bifida include participating in SBA’s online advocacy efforts or planning a community awareness day. You can also share your spina bifida story at hashtag #MySBStory.

For more ways to get involved, visit spinabifidaassociation.org.

In 1997, Mattel Toys made news when they released “Share-a-Smile Becky, a Barbie doll who came with a wheelchair. At first, disabilities advocates praised the company for its inclusive stance. But soon after she was released, they discovered that Becky, who was marketed as a friend of Barbie’s, had some issues. For one thing, her wheelchair didn’t fit through the door of the Barbie Dream House.

Confronted with the problem, Mattel chose not to change the dimensions of the Barbie Dream House. Instead, the company changed Becky. They tried remarketing her as “Becky, I’m the School Photographer,” “Sign Language ‘I love you’ Becky” and “Paralympic Becky.” Eventually, Mattel gave up on having a Barbie doll with a wheelchair and stopped selling Becky altogether.

As Karin Hitselberger, a blogger with cerebral palsy who uses a wheelchair told PRI (Public Radio International) in 2017:  “A lot of the talk about why Becky doesn’t exist anymore in any iteration is that it was too complicated to redesign Barbie world to fit Becky.” Hitselberger said Mattel’s way of handling Becky’s accessibility challenges “speaks volumes to the way we think about disability.

“A lot of the ways we think about disabilities, we talk about ‘fixing disability,’ instead of focusing on ‘fixing society,’” she said.

But more than 20 years later, Mattel has gone back to the drawing board.

Last week, the company announced they will introduce two new Barbie dolls. Part of a more inclusive Barbie line called Fashionistas, which also includes racially diverse dolls, and dolls with different body types, Mattel will now offer a Barbie that uses a wheelchair and a Barbie that comes with a removable prosthetic leg.

In a statement, Mattel said: “As a brand, we can elevate the conversation around physical disabilities by including them into our fashion doll line to further showcase a multidimensional view of beauty and fashion.”

Though it’s not yet known whether the new Barbie’s wheelchair will fit into the Barbie Dream House, this time around, Mattel has taken steps to design a wheelchair and a removable prosthetic that are realistic-looking representations. It appears they have also taken the issue of accessibility into account, since the new Barbies will be sold with wheelchair ramps that are Dream House-compatible.

We regret that it took 20 years, but we’re very pleased that Mattel is trying again! The new Barbies are expected to be available during the summer or fall of 2019.

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Most likely, you know swimmer Michael Phelps as the most decorated Olympic athlete in history. Over the course of his career, Phelps won 28 medals including 23 gold medals — the most golds any Olympian has ever won. But perhaps you don’t know that in 2008, Phelps used the performance bonus he received from his gold medal wins to start the Michael Phelps Foundation. The Foundation promotes water safety, health and wellness and encourages participants to reach their highest potential.

Since Phelps retired from competitive swimming in 2016, he’s redoubled his efforts to promote health and mental health and has worked tirelessly on behalf of the disabilities community.

Specifically, Phelps has supported organizations that work to destigmatize mental illness, something he has struggled with in the past.

Last week, word came that Phelps, 33, is the recipient of the fifth Morton E. Ruderman Award for Inclusion of People with Disabilities. Previous winners include actress Marlee Matlin who is deaf.

In a statement, Jay Ruderman, President of the Ruderman Family Foundation said “Michael has shined a national spotlight on mental health and is helping to eradicate shame and stigma from our society. He has changed the landscape of mental health awareness, and we look forward to working with Michael to create a world in which everyone feels comfortable sharing their stories.”

Phelps’ efforts on behalf on the disabilities community include serving as global ambassador for Special Olympics International. As Honorary Chairperson of the Substance Abuse and Mental Health Services Administration’s (“SAMHSA”) National Mental Health Awareness Day 2017, Phelps received the organization’s Special Recognition Award. Additionally, Phelps is an Ambassador for the Child Mind Institute’s #MyYoungerSelf social media campaign which aims to end stigmas associated with mental illness and learning disabilities.

In a press release, Phelps expressed gratitude to the Ruderman Foundation for “their continued efforts to help eliminate the shame and stigma that surrounds mental illness.”

“Together, we can normalize the mental health conversation and recognize the potential in every person — with or without mental illness — to contribute to our world in their own unique way,” said the athlete.

Gerber has been making baby food since 1927. A year after its founding, the company launched a contest to find an image of “the perfect baby” to represent its advertising campaign. The winning entry was a charcoal sketch of an adorable infant drawn by artist Dorothy Hope Smith. Forty years later, the identity of the Gerber Baby, was finally revealed. The baby was Ann Turner Cook, a neighbor of the artist, who later became an English teacher and mystery novelist. Her image has remained the company’s trademark for more than 90 years.

In 2010, Gerber originated another contest — the Gerber Baby Photo Search. Earlier this month, the company made history when it chose 18-month-old Lucas Warren, a baby with Down’s syndrome from Dalton, Georgia as its 2018 Gerber “Spokesbaby.” The choice of Lucas speaks volumes about the country’s evolving attitudes toward people with Down syndrome and other disabilities.

Down syndrome was formally recognized by British physician John Langdon Down in 1866. According to the National Association of Down Syndrome, little was understood about the syndrome until 1959, “when French Pediatrician/Geneticist Professor Jerome Lejeune discovered that individuals with Down syndrome have an extra chromosome—just one year before NADS was founded. Shortly thereafter, chromosome studies were developed to confirm the diagnosis of Down syndrome.” Prior to that, most babies born with Down syndrome, then referred to by the derogatory and obsolete term, mongoloid, were institutionalized.

By the 1970s, some parents were being advised to raise their babies with Down syndrome at home. NADS helped parents to do so through their services for families and children with down syndrome. Yet, several decades would pass before people outside the Down syndrome community would gain awareness of the abilities and talents of individuals with Down syndrome.

In recent years, the world has come to recognize that having Down syndrome need not be a barrier to accomplishing just about anything. Today, people with Down syndrome are well-known actors, musicians, athletes, fashion designers and politicians — and yes — Gerber babies!

In a Feb. 7, 2018 press release, Gerber President and CEO Bill Partyka said: “Lucas’ winning smile and joyful expression won our hearts this year, and we are all thrilled to name him our 2018 Spokesbaby… Every year, we choose the baby who best exemplifies Gerber’s longstanding heritage of recognizing that every baby is a Gerber baby, and this year, Lucas is the perfect fit.”

Upon learning that her son was grand prize winner, Lucas’ mother Cortney Warren said: ““This is such a proud moment for us as parents knowing that Lucas has a platform to spread joy, not only to those he interacts with every day, but to people all over the country…We hope this opportunity sheds light on the special needs community and educates people that with acceptance and support, individuals with special needs have the potential to change the world – just like our Lucas!”

Congratulations Lucas!

Like so many girls her age, Melissa Shang of Westborough, Massachusetts, loves American Girl dolls and the accompanying books that tell the dolls’ stories. The company’s BeForever line includes dolls and stories that teach children ages 8-13 about American history, with characters including Kaya, a Native American girl living in the mid-late 1700s, Felicity, whose story takes place at the beginning of the American Revolution, Josefina, a Mexican-American girl living in the early 1800s and Molly, who resides in Illinois during World War II. Beginning in the early 2000s, the company launched its Girl of the Year line, featuring contemporary heroines of different races, religions and ethnicities dealing with a variety of challenges.

Melissa enjoyed playing with the dolls and learning about their stories, but as a girl with Charcot-Marie-Tooth disease, a type of muscular dystrophy, she longed for an American Girl doll who like her, had a disability. With the support of her older sister Eva, in 2014 Melissa initiated an online petition asking the creators of American Girl dolls to add a Girl of the Year doll with a disability. Though the petition went viral, was signed by more than 140,000 people and garnered significant media attention, the company has not committed to produce a doll with a disability.

So, the Shang sisters moved on to Plan B: They wrote a book about a character named Mia, who like Melissa, attends middle school, has hobbies and friends and uses a wheelchair. The sisters set up a Kickstarter campaign, quickly raising enough money to hire an editor and literary agent and eventually, they sent the book, “Mia Lee is Wheeling Through Middle School” out to publishers.

Yet, the responses Melissa received from publishers were disappointing and remarkably like one another. Publishers felt that Mia, the book’s protagonist, seemed “too happy” for a girl with a degenerative nerve disease who used a wheelchair.

Writing in an opinion piece for the New York Times published in June, 2017, Melissa explained, “Mia Lee, my sassy, YouTube-loving heroine, differed too much from the convention of what a disabled kid is supposed to be like…There are very few stories about kids in wheelchairs, and there are even fewer with a disabled person who is cheerful and happy.

“Disability is always seen as a misfortune,” wrote Melissa, “and disabled characters are simply opportunities to demonstrate the kindness of the able-bodied protagonists.”

Still determined to get her book out, Melissa used money from the Kickstarter campaign to self-publish it. In August 2016, her dream came true. Since then, “Mia Lee is Wheeling Through Middle School” has sold hundreds of copies. According to Amazon.com “Melissa has gone on to become a young disability advocate. She has given a TEDx talk, spoke at the United Nations, and introduced Malala Yousafzai at the National Constitutional Center.”

To learn more about Melissa Shang, visit her website at melissashang.com

Planning on being in or around the Buffalo, N.Y. area this summer? If so, you may want to spend a few hours at the Museum of disABILITY History. Founded in 1998, the museum was the brainchild of Dr. James Boles, president and CEO of People Inc., Western N.Y.’s leading nonprofit human services agency. Boles first recognized a need for a museum that collected and displayed archives and materials related to disability while teaching an Introduction to Disabilities class at the State University of New York at Buffalo.

“The museum started with a small traveling exhibition entitled, “The Birth of Newborn Screening,” says Museum of disABILITY History director, Douglas Farley. “From there, it grew by adding a new exhibit each year. After ten years, the museum had enough content to set up shop permanently. In 2010, the New York State Board of Regents granted a charter.” It remains the only bricks and mortar museum dedicated to preserving disability history, says Farley.

The museum’s permanent installation includes exhibitions on how the care of people with disabilities has evolved from early poorhouses and almshouses to state schools and institutions. Other permanent exhibitions include “Eugenics in America,” “Pop Culture,” “Sports and Disability,” “The Evolution of Adaptive Equipment,” and a display of  “The Invacar, a three-wheeled carriage powered by a motorcycle-type engine, that was manufactured in Britain from 1948–1977.”

On display through the end of 2016, visitors can view the museum’s newest temporary exhibition, “In Celebration of Down Syndrome.” The multimedia exhibition chronicles the medical history, myths and realities highlights the successes of people with Down syndrome and explores depictions of Down syndrome in popular culture.” Highlights of “In Celebration of Down Syndrome” include photography by Eva Snoijink, author of “Downs Upside: A Positive View of Down’s Syndrome,” and “Kelly’s Hollywood,” a documentary by a woman with Down Syndrome.

Also on temporary display, is “The Lives They Left Behind: Suitcases From a State Hospital Attic.” The exhibition includes contents from hundreds of suitcases, belonging to patients at the Willard Psychiatric Center, located in the Finger Lakes region of N.Y. When the facility closed in 1995, the forgotten suitcases were discovered. They “tell the stories of the lives that were left behind when patients entered the center, many of whom never left.”

In addition to its exhibition, the museum features a wide range of public programs including films, openings, readings and special events.

The building which houses the museum, originally a 1930s-era fire hall, includes a 5,000 square foot gallery, a small theater, a space for the museum’s archives, offices and meeting rooms. Farley says the museum’s main floor is fully accessible, and each of the museum’s three levels is accessible by elevator. Museum docents are part of a vocational program with People Inc.

For additional information about the Museum of disABILITY, and to take its virtual tour, visit museumofdisability.org. Also available on the museum’s site are free educational curricula about disability history for grades PreK – 12.