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HEALTH MATTERS: Persons with disabilities fight battle for inclusion

Would it surprise you to know that the world’s largest minority group is the disability community?

The world’s population is 7 billion and counting. Worldwide there are more than 1 billion people who live with a disability.

In the United States, nearly 20 percent, about 57 million people, live with disabilities. Of those 57 million Americans, 6.5 million are children and young adults.

The World Bank reports that, “Every minute, more than 30 women are seriously injured or disabled during labor. However, those 15 – 50 million women generally go unnoticed.”

In 2014, UNICEF estimated the number of children with disabilities between 0 and 18 years ranged between 93 million and 150 million. The likelihood of children with disabilities to experience violence and some form of bullying is nearly four times higher than non-disabled children. Isolation and lack of exercise is another issue among children and young adults with disabilities.

KEEN Founder, Elliott Portnoy saw a need to provide a way for children with disabilities to have fun in a safe, noncompetitive environment. Kids Enjoy Exercise Now (KEEN) links children with disabilities to other children like them in an innovative, recreational program. Elliott and his wife, Estee brought KEEN to the Washington, D.C. area in 1992.

In 2005, KEEN began its expansion across the United States, opening its doors to more children and volunteers in Chicago, Los Angeles, St. Louis, San Francisco, New York and Phoenix.

As KEEN grew, it remained committed to maintaining its basic ideals: providing free recreational opportunities to children and young adults with disabilities by pairing them with trained volunteers. KEEN seeks to develop each child’s self-esteem and confidence, as well as recreational skills and talents.

KEEN LA meets the needs of young people like Freddy, a 15-year-old boy with autism. Freddy had difficulty participating in physical activities. Too intimidated to interact with the other kids, he chose to spend recess alone. As he became increasingly withdrawn, Zulma, Freddy’s mother, knew that bullying was most prevalent during recess time. She heard about KEEN and brought Freddy to the sessions.

KEEN’s sessions include general gym-based activities, such as basketball, scooters, tunnels and parachutes to music-and-dance or arts-and-crafts, as well as swimming, bowling, and tennis.

“Together with their volunteer ‘coach,’ we let them discover together just what they can and want to do,” said KEEN LA Executive Director Rebecca Polivy.

“KEEN sessions created an atmosphere for him to learn how to play, throw a ball, and be part of a team,” Zulma recalled. “It was a routine he enjoyed because he was part of a group. At KEEN, Freddy became a leader as opposed to an outsider.”

KEEN LA welcomes any child or young adult regardless of their disabilities to participate in an open, unstructured environment. For some of the children and young adults who are unable to participate in other programs, KEEN may be their only recreational activity.

Sport is widely recognized as an integral part of Australian life. The Australian Sports Commission ensures that all Australians — including coaches, people with disabilities, Indigenous Australians, juniors, officials, older people, volunteers, and women and girls — have opportunities to be involved.  (Source:  Australian Sports Commission)
Sport is widely recognized as an integral part of Australian life. The Australian Sports Commission ensures that all Australians — including coaches, people with disabilities, Indigenous Australians, juniors, officials, older people, volunteers, and women and girls — have opportunities to be involved.
(Source: Australian Sports Commission)

Since 1992, the International Day of Persons with Disabilities is celebrated on Dec. 3. It is a reminder to the world to continue to raise awareness about disability issues and reinforce the benefits of an all-inclusive and accessible society.

“In my first year in office, the United States joined 140 other nations in signing the United Nations Convention on the Rights of Persons with Disabilities — the first international human rights convention to fully address human rights in the context of disability,” President Barack Obama said. “Now joined by over 160 states parties, this convention serves as a beacon of hope to the more than 1 billion people worldwide who live with a disability — a reminder that the need to protect disability rights does not end at our borders.”

In 2010, President Obama issued Executive Order 13548 for the federal government, the nation’s largest employer, to become a model employer of individuals with disabilities. At the end of fiscal year 2015, the U.S. Office of Personnel Management reported in September 2016, that the federal government hired 154, 212 permanent and temporary employees with disabilities, with 109,575 of these being permanent career employees with disabilities, which exceeded the administration’s goal of 100,000 people with disabilities. There are more people with disabilities in federal service than at any time in the past 35 years.

“We have taken important steps forward to advance the rights of persons with disabilities, but the fight is not over,” President Obama said in a recent proclamation. “Because of the advocates who have led the way, more individuals with disabilities can pursue their full measure of happiness.”

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Considered one of the nation’s leading experts, advocates, and thought leaders for disability, aging and health and human services policy and programs, Steven J. Tingus is one of the 1 billion voices for persons with disabilities.

In 1963, Tingus was born with a rare form of muscular dystrophy, which is a slowly progressive muscle disease characterized by muscle stiffness and limited mobility.

“The oldest of three siblings who are able-bodied, my parents never treated me differently,” he said. “In fact, they punished me right along with my brother and sister when I got in trouble.”

Tingus said his parents taught him the worth of a solid education and the meaning of gainful employment in order to be self-sufficient.

“Regardless of my need for physical assistance with things that the average person takes for granted, I maintain full command of my life and the pursuit of the American Dream,” Tingus said.

Following the enactment of the Rehabilitation Act of 1973, Tingus became the first “handicapped” student to enroll in the public school system in Northern California. This “first” set the stage for him to achieve several accomplishments that opened the doors and improved the lives for his peers with disabilities.

Tingus earned a bachelor’s degree in biological sciences, and a master’s degree in physiology from UC Davis.

His advocacy did not go unnoticed. President George W. Bush invited Tingus to the East Room of the White House to deliver a speech on behalf of the president for the unveiling of the New Freedom Initiative (NFI) before members of Congress, the press and leaders from the disability community.

Tingus helped craft the NFI which served as the blueprint for the Bush administration’s policy supporting people with disabilities.

President Bush appointed Tingus to serve as the director of the National Institute on Disability and Rehabilitation Research at the U.S. Department of Education, followed by an appointment to serve as the deputy assistant secretary for Planning and Evaluation (Disability, Aging, and Long-Term Care Policy) at the U.S. Department of Health and Human Services. He also chaired the President’s Interagency Committee on Disability Research and various White House task forces focused on disability policy and research.

In 2011, Steven J. Tingus Consulting was established to advise nonprofit foundations, entertainment industry executives and political leaders on disability policy, diversity and inclusion. Tingus brings his expertise in disability policy to the entertainment industry in support of talent with disabilities.

“The entertainment industry can be an incredible ally in creating social change,” Tingus said. “I enjoy educating industry leaders on the business sense of hiring highly-talented and trained people with disabilities onscreen and behind the camera.”

His mission is to build a network of high-profile actors, producers, casting directors and other key players in the entertainment industry towards increasing storyline development and hiring so that the 2.5 percent representation on TV and 0.9 percent in film is changed for the disability community.

“At Diverse City Entertainment, we advocate that amongst the world’s population are some of the most talented people on earth,” said Tingus, who is a partner. “Unfortunately, very few ever get the opportunity to shine on the world’s stage.”

He states that many things need to change:

• Talent and production trailers should be made to accommodate people with physical disabilities.

• Stereotypes of people with disabilities should not be depicted in the media as evil, non-sexual, objects of curiosity or pathetic.

• The use of language and terminology to describe people with disabilities should not be negative or one-dimensional, such as handicapped, crippled or lame.

“I learned to adjust to society’s ever-changing perceptions and discriminatory practices that seem to hold back people with disabilities and those of color,” Tingus said. “Our communities are not well understood by the general public because we haven’t done an effective job of educating the public through the media about our struggles and aspirations.”

One of the most important things Tingus wants people to know is that the term “disabled” is a misnomer.

“Of course, there are people with severe conditions, but most of us are capable of living the American Dream with reasonable accommodations that assist us in filling in with the physical adjustments,” he said.

“People think that you can’t, when in fact you can,” Tingus said. “In my case, I’ve done more than the average able-bodied individual; however, when you want to do more they still think that you can’t.”

Tingus developed strategic partnerships with Diverse City Entertainment, Abilities Network@NBCUniversal, and Writers with Disabilities Committee to promote the employment of talented individuals with disabilities into all facets of the entertainment industry.

He constantly pushes for accurate portrayal of individuals with disabilities and others with health-related challenges, and the hiring of talent with disabilities (including veterans) in front and behind the camera to promote diversity and inclusion.

“TV series like ‘Speechless’ about life in a special needs family is a great start but only a drop in the bucket,” Tingus said. “The TV family’s oldest son, JJ — a high school student with cerebral palsy — is played by actor Micah D. Fowler who actually has the disorder.

Practicing what he preaches, Tingus is an actor and his roles in movies and TV (e.g., Showtime’s upcoming “Twin Peaks” revival miniseries), have earned him a membership in the Television Academy, the Multicultural Motion Picture Association and the Hollywood Diversity Association.

“International Day of Persons with Disabilities means to me that we set a standard whereby anyone with a disability is treated with respect, and is welcomed and included to all parts of the world,” Tingus said. “With nearly a billion people with disabilities in the world, it just makes sense — literally, monetarily, and physically.”

The world is slowly allowing people with disabilities to develop and showcase their talents. If it was up to advocates like President Obama, Portnoy, Polivy and Tingus, no one would be left behind and we would live, work and play in an “all-inclusive” world. 

Marie Y. Lemelle, MBA, a public relations consultant, is the owner of Platinum Star PR and can be reached on Twitter @PlatinumStar or Instagram @PlatinumStarPR. Send “Health Matters” related questions to healthmatters@wavepublication.com and look for her column in The Wave.