SpecialStories

Author: Thomas J. Lambke

Major Character with a Disability: Bryan Lambke

Short Description

The story of Tom and Bryan’s experiences going to Special Olympics World Games in Ireland.

Published by: Morelos (US), 2004

Tom and Bryan are father and son as well as Unified Partners in Bowling with Special Olympics from Arizona. The book describes their experiences going to World Summer Games in Ireland in 2003. It covers the time before, during, and after the Games from Tom’s viewpoint with much of the emphasis being how his son was affected by the experience. There are also many descriptions of their family life apart from the Special Olympics experience (which frankly I found to be somewhat boring). However, the book gives a thorough description of what it is like to go through an very exciting experience.

Authors: Bryan and Tom Lambke

Major Character with a Disability: Bryan Lambke

Short Description

The author describes his life with the help of his father.

Published by: Five Star Publications (US), 2006

Author with Disabilities: Bryan Lambke

A black-and-white photo essay about the life of Bryan Lambke who has Down Syndrome. Mostly it is pictures with captions that describe his life and give his viewpoint on matters important to him. There are not a lot of words but he does get his point across.

Original Source: San Diego Union-Tribune

SAN DIEGO – The first time Patrick Ivison, 14, went surfing, he said, “It felt like flying.”

The blond teenager with the cracking voice and braces has been in a wheelchair most of his life because of a childhood spinal injury. But Patrick’s disability hasn’t stopped the Scripps Ranch High School freshman from playing sports.

“The first time I went surfing, the guy threw me on his board and took me along for the ride,” Patrick said. “It’s gone beyond that to where they’re teaching me what to do.”

This year, with help from friends, Patrick achieved his dream of tackling the waves on his own surfboard. His mentor, Robbie Nelson of Happy Barrels Surf School in Encinitas, taught him to use a custom board with foam ridges he can grip with his arms.

That success has motivated Patrick to work even harder at the grueling physical therapy that makes him stronger.

Recently, Nelson took Patrick out in a boat for his first try at tackling the powerful waves off Point Loma’s Sunset Cliffs. With volunteers paddling nearby, Nelson positioned Patrick on his surfboard facing the shore.

It took awhile before they could catch one of the waves barreling toward them, and they went under a few times. Patrick shrieked with delight as his board finally caught one of the reef breaks.

“Woooooo! I’m flying!” he yelled as he coasted on the wave.

Nelson cheered him on from the water, praising Patrick for hanging on tight.

The teen stayed out for more than an hour, cheeks red with cold. He returned to the boat only once, to have hot water poured into his wet suit to warm his 130-pound body.

“That was incredible,” he said afterward. “Complete weightlessness.”

Patrick lost most of the use of his legs and arms in an accident when he was a toddler. He and his mother, Jennifer Kayler, were walking behind a car in Imperial Beach when the driver suddenly backed up and trapped Patrick underneath.

That was Sept. 24, 1995. He was 14 months old.

The doctors said Patrick’s spinal cord was damaged near the base of the neck and that he would be a quadriplegic, in a wheelchair for life.

The driver was uninsured, Kayler said.

Kayler quit her job as a secretary to care for her son and relies on government assistance while studying to be a registered nurse. She has sole custody of Patrick and his sister, 11-year-old Samantha, and they live in Scripps Ranch with Kayler’s parents, Janice and Bob.

Despite a prognosis that Patrick would not walk again, Kayler was determined to give her son a full life.

He plays wheelchair sports through the San Diego Adaptive Sports Foundation and is an active Boy Scout. In his bedroom, rugby, soccer and basketball trophies overlook a bed that he can lower or raise with a control pad. Surfing posters – one signed by Greg Noll – adorn the walls.

In 2003, Patrick got his first taste of surfing through Life Rolls On, a Los Angeles-based organization that helps disabled people surf. The group was founded by Jesse Billauer, a well-known surfer who hit his head on a sandbar at age 17 and became a quadriplegic, a story documented in the 2003 film “Step Into Liquid.”

Nelson, a volunteer with Life Rolls On, agreed to teach Patrick one-on-one last year. Nelson devised a system in which a “pitcher” would aim Patrick toward the shore, and a “catcher” would help him safely come to a stop.

In July, Patrick was able to surf by himself for the first time.

“He’s making dramatic progress, and I’m blown away,” Nelson said.

Patrick hopes that one day, a scientific breakthrough will allow him to walk – and maybe even stand up on a surfboard.

“The ultimate dream is to be able to walk,” he said. “But the goal in the meantime is to become 100 percent independent.”

A few years ago at a mall, Patrick and his mother met some men in wheelchairs who told them about a rehabilitation program in Carlsbad known as Project Walk. The nonprofit center helps people who use wheelchairs build strength by exercising parts of the body they can’t move or control on their own.

Patrick started the program in 2005, three days a week after school. At rehab, he struggles to get his legs to cooperate with a stationary bike. He practices his walking gait on a treadmill in a weight-supporting sling. He forces his fingers to curl around hand weights while a specialist stretches his legs.

By the time he leaves, he is exhausted – and proud.

Kayler holds fundraisers to pay the $2,800-a-month bill for rehab, which insurance doesn’t cover.

“He really looks like a different kid,” she said. “He’s 100 percent stronger.”

Patrick is learning how to take care of himself. So far, he can handle a fork and knife, and can get himself in and out of bed.

Early this year, he mastered an essential skill – emptying his bladder with a catheter, which means that his mother no longer has to accompany him to the bathroom. “You can put that in the story,” he said.

Patrick said learning to surf gives him confidence that he can do even more.

In a few years, he hopes to “go to college without my mom.”

This story isn’t about an athlete with disabilities (although an injury might be considered a temporary disability) but it is definitely inspiring.

Original story

PORTLAND, Ore. – With two runners on base and a strike against her, Sara Tucholsky of Western Oregon University uncorked her best swing and did something she had never done, in high school or college. Her first home run cleared the center-field fence.

But it appeared to be the shortest of dreams come true when she missed first base, started back to tag it and collapsed with a knee injury.

She crawled back to first but could do no more. The first-base coach said she would be called out if her teammates tried to help her. Or, the umpire said, a pinch runner could be called in, and the homer would count as a single.

Then, members of the Central Washington University softball team stunned spectators by carrying Tucholsky around the bases Saturday so the three-run homer would count – an act that contributed to their own elimination from the playoffs.

Central Washington first baseman Mallory Holtman, the career home run leader in the Great Northwest Athletic Conference, asked the umpire if she and her teammates could help Tucholsky.

The umpire said there was no rule against it.

So Holtman and shortstop Liz Wallace put their arms under Tucholsky’s legs, and she put her arms over their shoulders. The three headed around the base paths, stopping to let Tucholsky touch each base with her good leg.

“The only thing I remember is that Mallory asked me which leg was the one that hurt,” Tucholsky said. “I told her it was my right leg and she said, ‘OK, we’re going to drop you down gently and you need to touch it with your left leg,’ and I said ‘OK, thank you very much.’”

“She said, ‘You deserve it, you hit it over the fence,’ and we all kind of just laughed.”

“We started laughing when we touched second base,” Holtman said. “I said, ‘I wonder what this must look like to other people.’”

“We didn’t know that she was a senior or that this was her first home run,” Wallace said Wednesday. “That makes the story more touching than it was. We just wanted to help her.”

Holtman said she and Wallace weren’t thinking about the playoff spot, and didn’t consider the gesture something others wouldn’t do.

As for Tucholsky, the 5-foot-2 right fielder was focused on her pain.

“I really didn’t say too much. I was trying to breathe,” she told The Associated Press in a telephone interview Wednesday.

“I didn’t realize what was going on until I had time to sit down and let the pain relax a little bit,” she said. “Then I realized the extent of what I actually did.”

“I hope I would do the same for her in the same situation,” Tucholsky added.

As the trio reached home plate, Tucholsky said, the entire Western Oregon team was in tears.

Central Washington coach Gary Frederick, a 14-year coaching veteran, called the act of sportsmanship “unbelievable.”

For Western Oregon coach Pam Knox, the gesture resolved the dilemma Tucholsky’s injury presented.

“She was going to kill me if we sub and take (the home run) away. But at the same time I was concerned for her. I didn’t know what to do,” Knox said.

Tucholsky’s injury is a possible torn ligament that will sideline her for the rest of the season, and she plans to graduate in the spring with a degree in business. Her home run sent Western Oregon to a 4-2 victory, ending Central Washington’s chances of winning the conference and advancing to the playoffs.

“In the end, it is not about winning and losing so much,” Holtman said. “It was about this girl. She hit it over the fence and was in pain, and she deserved a home run.”

Major Character with a Disability: Alex (played by Joey McFarland, Joshua O’Neill, and Ted Polito)

Short Description

A mother educates about people with Down Syndrome like her son.

First Broadcast on CBS (US Network) on November 8, 1987

Main Cast:

Tyne Daly - Joanna Goodman Richard Crenna - Bob Goodman
Martin Balsam - Grandpa
Joey McFarland - Alex–Age 4
Joshua O’Neill - Alex–Age 5 1/2
Ted Polito - Alex–Age 8 1/2 to 9 1/2
David Kaufman - Ritchie
Amy Van Nostrand - Amy

Writer: Emily Perl Kingsley

Director: Georg Stanford Brown

Long Description

Bob and Joanna, both over 40 years old, have a baby with the Down syndrome. Their doctor advises them to give the child away, not to “waste their time” with a kid with a mental deficiency. But the parents decide to keep their son, to allow him a life with dignity and to support him as best as possible. And their devotion bears fruit… Written by Tom Zoerner {Tom.Zoerner@informatik.uni-erlangen.de}

A television movie about a mother who starts a crusade to re-educate the community to the truth about kids, like her own, who have Down’s Syndrome, a cause of mental retardation. One of the writers, Emily Perl Kingsley, is the mother of a Down’s Syndome child, and the film is based on her story.

From hollywood.com

Original source: The Gazette

Six young adults with Down Syndrome will travel to Peru, live in a village and climb to Machu Picchu. The trip is intended to show that people with the condition can contribute to a community

IRWIN BLOCK, The Gazette

At the end of May, six young adults will be flying to Peru to live in a village, study Spanish and climb to Machu Picchu.

What makes this excursion special is that all six have Down Syndrome and it’s planned as much more than an educational trip, says Gregory McKenna, father of Shawn, 20.

“The goal is to show what people with trisomy 21 - the scientific term for Down Syndrome - can do if they have the chance,” the senior McKenna, an inspector for the Canada Border Services Agency, said yesterday.

Jean-Franois Hup (left) and Shawn McKenna are two of six young adults who are hoping to change how the public perceives people with Down Syndrome.

JOHN KENNEY THE GAZETTE

(Trisomy 21 is the presence of one extra copy of a chromosome, usually chromosome 21, which causes developmental problems.)

These four men and two women, age 18 to 30, all had the advantage of coming from families who sought the best resources available to develop their children’s potential to the fullest.

However, their parents and teachers want to show that many can lead useful adult lives beyond subsisting on welfare payments, McKenna, a Valleyfield resident, explained.

“They may not be able to be professionals, but there are lots of things they can do to contribute to society,” said Jean Hupé of Laval, an administrator, father of Jean-François Hupé, 30.

Two of the young adults chosen for the trip, for example, are accomplished athletes. Mélanie Giroux was a gold and silver-medal swimmer at the 2007 edition of the Special Olympics World Summer Games in Shanghai, while Shawn McKenna is a multiple sports medallist in provincial and national sports events.

An additional aspect is that no parents will be coming along, a condition set by trip organizer Jean-François Martin, who teaches special education at CEGEP du Vieux Montréal and is the father of Karl, who also has Down Syndrome.

Martin is also president of the Regroupement pour la Trisomie 21, an association of 400 families, one of whose members has Down Syndrome.

“We hope to change the vision that people may have of Down Syndrome,” Martin said.

A film that is being made of the project for broadcast on Canal D will show that people with Down Syndrome “can have goals, can achieve goals and can provide something to the community,” Martin said.

In the village, the visitors will help with agricultural tasks and assist in building a library there.

Six of his CEGEP students in their third year of special education will be using the 12-day excursion as a training experience.

About 14 young people applied and were then evaluated and selected for the trip by the CEGEP students.

The applicants hiked at Mont St. Hilaire and went on a few weekend trips to assess how they function in a group.

“The organizers wanted to avoid any surprises,” McKenna said.

The initial budget is about $55,000 and the cost is being borne by parents and some donations.

The project is getting a boost from singer Jean-Marie Lapointe and his singer-father, Senator Jean Lapointe, who are presenting their comedy show Faces à Farces as a fundraising benefit to aid the project.

Faces à Farces is on April 12 at 9 p.m. at Maison Théâtre, 245 Ontario St. E. Tickets, including a tax-deductible donation, are available at $100 or the regular price of $35 at admission.com

iblock@thegazette.canwest.com

Update from Greg McKenna (Jan. 2009)

The trip by the 6 young adults with Down Syndrome was a great success. A
documentary and a book has been made of the event. Both are in French.
The documentary has won 2 prizes at its first showing at the Festival
International du Film de L\’Abitibi in Rouyn-Noranda in early October 2008. It
won the Grand Prize of the jury and also the Grand Prize of the public.
The documentary is a roller-coaster of emotion bringing the viewers from
laughter to tears and back to laughter with a breathtaking landscape of Peru as
background.
The documentary should be on the big screen in mid-Feb 2009 and on Canal-Vie
during the year.

Major Performers with a Disability: Wyatt, Henry, Adam, Lexi, Neal

First Broadcast on HBO (US Network) in March, 2008

Information from tv.com

Cast

Main Cast

Elaine Hall
Wyatt
Henry
Adam
Lexi
Neal

Description

Five autistic children seize the spotlight in this moving documentary about a troubling disorder affecting too many children in the world today. Focusing on the children, the camera follows the families as they struggle with and eventually triumph through the power of theater through the help of The Miracle Project founder Elaine Hall.

Unified teams from China and Germany after their gold medal game at the World Games in Dublin, Ireland in 2003.

Repeating History

Female actresses were not allowed on the English stage until 1660 so in
Shakespeare’s plays female roles were played by young boys. How quaint
we think now. In the 19th and early 20th centuries, African Americans
were portrayed by whites in black face. How racist we think
now. Today the gay and lesbian community questions why so many straight
actors get the parts to play members of their community.

It’s not hard to come up with examples of actors without disabilities who
played someone with an intellectual disability: Dustin Hoffman in Rainman,
Sean Penn in I Am Sam, or Cuba Gooding, Jr. in Radio.
Able-bodied actors also appear with regularity in roles where
characters have a physical disability: Jon Voight playing a parapalegic
in Coming Home, Daniel Day-Lewis playing a man with cerebral
palsy in My Left Foot, or Ben Affleck playing a blind superhero
in Daredevil. Now let’s think of movie stars with a disability.
There’s Marlee Matlin, an actress with a hearing impairment. And then
there’s, uh, well, … no one. Get my point?

Representation

Like most minorities, people with disabilities are underrepresented in
the media. According the 2003 US Census (the most recent available),
27.4% of the population has a disablility. That includes the 4.8% with
an intellectual disability. Do we see 1 person out of 4 on tv or in movies
having a disability? I think not.

I understand that movies and tv are for the most part fantasy and
escapism. Most actors and actresses are prettier and more handsome than
average. They speak in complete, well-formed sentences and are much
wittier than you and me. However, consider the audience. We all like to
see stories about us and want to relate to people with the
same abilities and disabilities as we have.

Realism

Actors like to stretch and play characters that are very
different than them. It makes their job more challenging and the result
more impressive. I wouldn’t want to deny them that opportunity. Of
course, they should be willing to allow an actor with disabilities the
same opportunity in reverse but I won’t go into that here. However, how
accurate are these portrayals? When I hear Marlee Matlin speak it
sounds very different than an actor that doesn’t have a hearing
impairment trying to immitate those sounds. People with Down Syndrome
have distinct physical characteristics (e.g. very flexible joints) that
are hard to realistically portray by people without that condition.

There are often situations where it would be appropriate for an
able-bodied actor to portray a character with a disability. For
example, in Forrest Gump Gary Sinise plays Lt. Dan Taylor who
has both legs at the beginning of the movie but loses one part way
through. With special effects it is a lot easier to paint out
a leg than to try to realistically add one to a person that does not
have one. I am not saying that there is no occasions for able-bodied
actors to play these roles just that the current balance is way off.

Capabilities

I am sure that one of the responses to my rant would be that people
with intellectual disabilities would find it hard to remember all their lines
and work in a complex industry. I have two words for them: Chris Burke.
He is the fine actor that was one of the leads in the television series
Life Goes On. The fact that he has Down Syndrome didn’t seem to
prevent him from doing a fine job in his role as a character with Down
Syndrome and it was much more realistic that way. That tv show also had
secondary characters (e.g. Chris Burke’s character’s girlfriend/wife)
portrayed by actors with intellectual disabilities and in my opinion it all
added to the realism of the show.

The Present

Life Goes On seems to have been a high point that has not been
duplicated in the dozen years since it went off the air. On tv a recent
special, Riding on the Bus with my Sister, the main character
had an intellectual disability but was portrayed by Rosie O’Donnell. In
the movies the situation is similar. In I am Sam, Sam had
several friends that were portrayed by characters with intellectual disabilities
but they were very minor roles. In Radio there were no other
such characters. The Ringer had a great supporting cast made up of real Special Olympics athletes but that movie was about Special Olympics and even there two of the supporting actors did not have intellectual disabilities. Nonetheless it was a welcome exception.

The Future

One can only hope that it gets better. If you agree with me then vote
with your pocketbook (i.e. watch shows, go to movies, etc. that feature
actors with disabilities) and make your friends and family aware of
this issue.

Words Matter

Words can open doors but they can also create barriers or stereotypes. Many people think that political correctness (or PC) has gone too far and that some people are overly sensitive. However, if it means that one person will not be hurt by a negative word or phrase then I’m willing to go as far as necessary.

The main guideline is that people should not be defined by their conditions, so we refer to a person with an intellectual disability and not an intellectually disabled person. Some other guidelines from Special Olympics literature can be found below.

There is no consensus on the proper term to use as a general term to describe the athletes in question. Disabilities are either intellectual, physical, or in some individuals, both. See the table below for a longer list of acceptable and not acceptable terms. Given the wide variety of acceptable terms it should be possible to find a description that we can agree on.

Appropriate Terminology

It is not appropriate to use the word kids when referring to Special Olympics athletes. Adult athletes are an integral part of the program.

It is also not appropriate to use the word the in front of Special Olympics unless describing a specific Special Olympics event, e.g. the 2005 Regional Summer Games Competition.