NYT: Martin Sheets, Who Shone at the Special Olympics, Dies at 62

Martin Sheets, who became a face of the Special Olympics, winning more than 250 medals competing for more than 40 years in its events for people with intellectual disabilities, died on Thursday in Greensboro, N.C. He was 62.

He had dementia, his family said.

Mr. Sheets, born with Down syndrome, competed in golf, swimming, Alpine skiing, tennis and powerlifting at the Special Olympics, his participation in the movement going back to its first international summer games, at Chicago’s Soldier Field in 1968.

He became ill after arriving there and was unable to compete, but at a banquet concluding the event, Eunice Kennedy Shriver, the founder of the Special Olympics, having learned of his disappointment, walked over to his table.

“I understand you trained to come to the games but you got sick,” she said. “Well, Marty, for your guts and your effort, I want you to have a gold medal, too. Here you go. Marty Sheets, the winner of the special gold medal for bravery.”

She draped it around his neck. Continue reading NYT: Martin Sheets, Who Shone at the Special Olympics, Dies at 62

From failure to community: College dropouts find new direction in L’Arche

Note: This is the first story in a series titled Where are they now? Life after L’Arche, which features the impact L’Arche Greater Washington, D.C., had on former assistants’ careers, faith, relationships, and lifestyles.

It was Lent, and Michael Carlisle was depressed. His plan to study philosophy and become a professor of Catholic sacred theology had fizzled out three years earlier. He was holding steady with a maintenance job at Cabela’s, an outdoor sports equipment retailer, but he was struggling to care much about life.

It was Lent, and L’Arche Heartland in Overland Park, Kan., was full of life. When Michael arrived at prayer night there was joyful shouting and a lot of laughter. The community had decided to forgo their usual dinner and eat only rice and beans so they could be in solidarity with L’Arche in Argentina, sending the dollars they saved on their meal to support those who had less.

Michael was there at the invitation of Fred Kaffenberger, a friend he’d met through involvement in a Catholic lay group called Communion and Liberation.

Twenty-five years earlier, Fred was in a position similar to Michael’s. His lack of motivation for studying computer science landed him on academic probation, and eventually he dropped out of college completely.

“I realized I couldn’t get the discipline and skills I needed by myself,” Fred said. “I figured if someone else was dependent on me I could do it. I could learn.”

He wrote to three different organizations inquiring about volunteer work. L’Arche was the only one that wrote back. So, knowing nothing of L’Arche’s founder Jean Vanier and with no particular knowledge or interest in disability services, he set off to be part of the community in Washington, D.C.

The year was 1988, and L’Arche’s home on Ontario Road in Adams Morgan was just five years old. In December of that year, Fred became one of the founding members of Euclid House, along with Dottie Bockstiegel, Wendy Moore, Gene Sampson, Glenn Houser, and Barbara Palmer. *

Fred celebrated his 21st birthday in L’Arche, and the trajectory of his life quickly began to change. He read voraciously during his spare time, consuming the works of such authors as Walker Percy and Flannery O’Connor. He and his housemates volunteered at the Potter’s House, a coffee shop with a service and social justice bent. They worked, prayed, and played together.

Early in 1989, Fred and other assistants traveled to Quebec for a retreat with Jean Vanier where L’Arche’s founder impressed upon him the underlying spirit of the organization.

“I didn’t have a lot of emotional intelligence,” Fred confessed. “I learned a lot about how to be with other people.” This wasn’t always easy. His housemates Gene and Glenn had spent their childhoods and their adult lives prior to L’Arche in Forest Haven, an institution with a notorious reputation where they’d had to keep their wits sharp and look out for themselves. At times, the housemates’ rougher edges caused conflict. But it was authentic, and it got Fred out of bed each day.

Growing up, Fred’s family was part of the Christian Family Movement, a Catholic network focused on family relationships and living out their faith through action. It was a strong foundation, but reflecting back Fred muses that his faith was perhaps a bit rigid.

In L’Arche, he took a closer took at the Beatitudes, eight blessings recorded as part of Jesus’ Sermon on the Mount. He’s quick to admit that many of L’Arche’s lessons took a long time to sink in (or, in the case of chore skills that would make him a better husband, never really stuck); but in L’Arche his faith was softened and deepened.

“The Beatitudes stayed with me because faith is about the love that Christ has for us that makes us free and allows us to grow,” he said. “It isn’t so much about what I do for other people, or the accomplishments that I have, but remembering that gaze on me.

After a year in L’Arche, Fred was ready to take on college again. This time, he focused on English. He completed a bachelor’s degree, then a master’s, and then a certificate in teaching. Lessons from L’Arche stuck with him when he taught at an all-girls Catholic school in the South Bronx after graduate school and in every job he’s had since.

“When someone is doing something to me or is against me, it’s because they have a great wound,” Fred said.

Now, L’Arche is back in his life in a way he never expected.

In the spring of 2014, Fred and his wife, Karen, lost their home on a short sale. Plus, Fred was looking for a better job. To say the least, it was a challenging time for their family.

Fred had visited the fledgling L’Arche Heartland community once soon after leaving D.C., but hadn’t connected since. While looking for work Fred discovered that the community was accepting applications for assistants. He thought Michael might be a good fit.

It turned out Fred was right. Michael moved in to Mercy House, one of Heartland’s five homes, in June 2014. At first, Michael thought it would just be a better job than working retail. He now sees that it’s a whole life—“a really beautiful life”—that he can imagine living for several years or more.

“I’ve learned to really care about life again,” Michael said. “Living here has forced me to live outside of myself and to enjoy life, to see the value in it, in myself, and in the people around me.”

Fred and Karen now live in the L’Arche Heartland neighborhood and are being drawn in to the community through their friendship with Michael. Fred reflects that it’s taken him a long time to see the value of community and the value of people more than accomplishments.

“But you know,” he said, “If it weren’t for failure, a lot of good stuff would never have opened up like it has.”

original article

Disability Scoop: Self-Advocate Gets State Of The Union Invite

Sara Wolff fought hard to help others like her, so U.S. Sen. Bob Casey, D-Pa., offered her a special thanks.

He invited Wolff to sit in the U.S. House gallery next Tuesday to watch President Barack Obama deliver the State of the Union speech. Wolff helped Casey get a bill passed that helps those with disabilities.

“I was very surprised and excited at the same time,” Wolff, 31, of Moscow, Pa. said Monday. “This is my first time. I’m very excited. A little bit nervous, but very excited.”

The Achieving a Better Life Experience Act, ABLE Act for short, allows people with disabilities to save money in untaxed accounts similar to tax-advantaged accounts used by families who save for college. The act also allows Americans with disabilities to save money for education, housing, transportation and health care without losing eligibility for government programs.

The bill passed the House on Dec. 3 by a vote of 404-17. In the Senate, the provision was part of a larger tax bill that passed 76 to 16.

Obama signed the bill into law Dec. 19.

“I call it history in the making,” Wolff, who has Down syndrome, said. “It’s very important for people with disabilities, Down syndrome, autism, etc. Now, they can save money for their future.”

Casey said he wanted to honor Wolff because of her advocacy. She kept him focused on getting the bill passed with a catchphrase, “Stay pumped,” he said. Wolff testified for the bill at a Senate hearing in July.

“If she wasn’t the leading, she was one of the leading voices in the country for passage of the ABLE Act,” he said. “I wanted to acknowledge her contribution, which was substantial. She was a personal witness, which was very compelling.”

original article

NPR: How Hema Ramaswamy Found Healing Through Traditional Indian Dance

Jewish girls go through the bat mitzvah, 15-year-old Latinas celebrate the quinceanera. And for generations of Indian-American girls, the culmination of years of studying classical Indian dance is a lavish solo performance before a crowd of hundreds. Reporter Arun Venugopal of member station WNYC attended what may have been the first such performance by a woman with Down syndrome.

An arangetram, which literally means “ascending the stage,” is a major accomplishment that takes years of preparation. This moment, when a student of dance or music asserts her artistic independence, usually happens in the teen years. Ramaswamy is 23.

Ramaswamy, who has Down syndrome, originally began dancing for health reasons. “But then it became part of her, and she really loves and enjoys it, and it took her 13 years with a lot of challenges, midway, to complete this,” explained her father, Ram. “And now today is a perfect day for her — her graduating in this art.”

She was able to achieve this despite her diagnosis and despite two major surgeries for a dangerous leak of cerebrospinal fluid. Her father said dance has strengthened Ramaswamy’s muscles and given her fine motor skills she simply didn’t have before.

“I feel so happy in dancing,” she beams, surrounded by a flurry of doting aunties while preparing for her performance.

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Patti Saylor to be honored nationally for advocacy

Patti Saylor will be honored with the National Down Syndrome Society’s Advocate of the Year award at an event in Washington later this month, the group announced Friday.

Saylor, of New Market, advocated for her son Ethan all his life, but took on a new role after his death.

Ethan Saylor, 26, died in January 2013 while he was being forcibly removed from a Frederick movie theater by three off-duty sheriff’s deputies.

Since Ethan Saylor’s death, Patti Saylor and her family have advocated for changes in police training and for better inclusion policies, among other things.

“I’m very honored,” Patti Saylor said Friday about the award. “I think the night will be a little difficult. It will be bittersweet because of the reason.” Continue reading Patti Saylor to be honored nationally for advocacy

News-Post: Judge criticizes use of force in Saylor case

A U.S. District Court judge’s opinion this week — which allowed a lawsuit filed by the family of Ethan Saylor to go forward — dwelled on issues of state police training and excessive use of force, topics brought to the state and national spotlight after Saylor’s death in 2013.

In a decision released Thursday, Judge William M. Nickerson wrote that he would not dismiss all claims against three Frederick County sheriff’s deputies or the state of Maryland because there was evidence the deputies violated Saylor’s constitutional rights and the state could be held responsible for violations of the Americans with Disabilities Act for improperly training them.

Nickerson indicated that his position was based on the allegations in the family’s initial complaint and could change as the case carries forward and more evidence is introduced.

In a lawsuit filed last October, Saylor’s estate alleged violations of his civil rights and of the Americans with Disabilities Act by the state, county sheriff’s deputies, and the companies where the men were moonlighting as security guards at the Regal Cinemas Westview Stadium 16 theater.

Saylor, 26, of New Market, had Down syndrome and died Jan. 12, 2013, from a lack of oxygen while being forcibly removed by the deputies after he tried to stay for a second showing of the movie “Zero Dark Thirty.”

Saylor died of asphyxia with a fractured larynx, according to the state medical examiner’s office, which ruled the death a homicide. A Frederick County grand jury declined to indict the deputies.

In separate motions, attorneys for the deputies, Regal and the state of Maryland all asked the judge to dismiss all claims against them.

In dismissing each of the claims against Regal Cinemas, Nickerson wrote that the actions of the manager in calling for help from security were too far removed from the actual action taken by the sheriff’s deputies. Continue reading News-Post: Judge criticizes use of force in Saylor case

Transition to Washington centers around son with Down syndrome

FROM THE WASHINGTON POST Barry and Kim Trotz figured familiarity could guide their youngest child through the biggest change of his life, so first they made sure to find 13-year-old Nolan a decent Tex-Mex restaurant. On the eve of Washington Capitals training camp, the final day of the offseason, the family dined at El Paso Cafe in Arlington, where Nolan had grown to love the salsa during their regular stops since moving here this summer.

“He’s a staple guy,” Barry Trotz says of his son, who was born with Down syndrome. But the new Capitals head coach also knows Nolan as many other things: a fearless adventurer, a strong swimmer, an ace at Wii baseball, a lover of spicy foods, a flirt around his sister’s friends and a prankster at dinner parties, a kid whose smile made hockey losses feel okay.

Raising a special needs son, the Trotzes usually worry about not doing enough, but in their new city, they lately have been feeling like they have too much piled on their plates.

They picked their Clarendon home based on Nolan’s needs, and at first it seemed ideal: grassy parks down the block, middle school within biking distance (either Barry or Kim steering the family tandem and Nolan riding in back), neighboring adults who invited them to an ice cream party and whose daughters knocked on the front door to invite Nolan to play kickball.

“Which never happens when you have a special needs kid,” Barry said.

But summer soon ended. No more knocking, no more kickball. Then school started, and Nolan’s teacher was great, but a new environment with less individual attention led to acting out in class. At home, Nolan had grown quieter since the family completed its move in late August. Vocalizing his feelings had always been a struggle, a product of his condition.

“I wish we could get in there for a couple minutes,” Kim said, meaning Nolan’s thoughts.

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NYT: Down Syndrome and Quality of Life, continued

Letters to the editor.

Re “The Truth About Down Syndrome,” by Jamie Edgin and Fabian Fernandez (Op-Ed, Aug. 29):

Two and a half years ago, I had the very choice the biologist Richard Dawkins and others deem so simple. Continue my pregnancy with a Down syndrome fetus, or terminate? I was 37, happily married, with one nondisabled child.

I have a Harvard degree and a graduate degree, and somehow the utilitarian calculus Mr. Dawkins cherishes (not to mention notions of what might happen 40 or 50 years down the line) provided zero assistance in that moment.

It was simply: Do my husband and I feel able to care for a child with a lifelong disability, whose severity we cannot determine but who will most certainly be significantly compromised? Who will also be able to love and be loved, and achieve within the limitations we all bear?

We went ahead, and I can only say our son has healed the doubt and fear in our hearts.

RACHEL SIEGEL

Great Barrington, Mass., Aug. 29, 2014

 

To the Editor:

Jamie Edgin and Fabian Fernandez write that virtually all children with Down syndrome will develop Alzheimer’s disease later in life. They write about this probability as if it were a mosquito bite, not the exhausting, nightmarish and costly situation that it is, with no upside whatsoever.

This occurs when the “child” is 40, and the parents, therefore, in their 60s or 70s, and badly in need of rest and time for themselves.

The “truth” about Down syndrome and dementia is that when you are faced with them, you deal as best you can, but you should not be talked into choosing them if it’s possible to make another decision for yourself and your child.

SUE W. RANSOHOFF

Cincinnati, Aug. 29, 2014

To the Editor:

As a mother of two children with Down syndrome and a concerned citizen, I question the wisdom of trying to predict quality of life based only on someone’s genes. Jamie Edgin and Fabian Fernandez carefully made the point that having Down syndrome does not hamper the ability to lead a happy, fulfilling life.

To be sure, not every person with Down syndrome is a happy person leading a rewarding life. There are grumpy, poorly behaved people with Down syndrome. There are plenty of those in the general population, too. The truth about people with Down syndrome is that they are individuals; most are happy, some are sad, some are smart, others not so much. They all add value and diversity to our society.

Now, when their existence is under severe threat because of advances in prenatal screening, I applaud every effort to underline the positive facts about living with Down syndrome.

RENATE LINDEMAN

Heiloo, the Netherlands, Sept. 1, 2014

 

To the Editor:

While I respect Richard Dawkins’s expertise and scholarship on Darwin and evolution, I take issue with his views on Down syndrome.

My son, Jason Kingsley, who has Down syndrome, has co-written and published a book (“Count Us In: Growing Up With Down Syndrome”); plays the piano and violin; paints, lives and works in the community; and recently performed as Snug the Joiner in a New York City performance of “A Midsummer Night’s Dream.”

While not all people with Down syndrome will achieve at this level, it is not possible to predict at birth, and certainly not prenatally, what their level of accomplishment will be.

What is safe to say, however, is that my son will never be the chief executive of a large corporation who remorselessly cheats millions of people out of their life savings. He will never be a lawmaker obstinately determined to obstruct progressive legislation.

I question who brings more suffering into the world.

EMILY PERL KINGSLEY

Briarcliff Manor, N.Y., Sept. 2, 2014

The writer is a member of the advisory board of the National Down Syndrome Society.

original article

NYT: The Truth About Down Syndrome

LAST week the biologist Richard Dawkins sparked controversy when, in response to a woman’s hypothetical question about whether to carry to term a child with Down syndrome, he wrote on Twitter: “Abort it and try again. It would be immoral to bring it into the world if you have the choice.”

In further statements, Mr. Dawkins suggested that his view was rooted in the moral principle of reducing overall suffering whenever possible — in this case, that of individuals born with Down syndrome and their families.

But Mr. Dawkins’s argument is flawed. Not because his moral reasoning is wrong, necessarily (that is a question for another day), but because his understanding of the facts is mistaken. Recent research indicates that individuals with Down syndrome can experience more happiness and potential for success than Mr. Dawkins seems to appreciate.

There are, of course, many challenges facing families caring for children with Down syndrome, including a high likelihood that their children will face surgery in infancy and Alzheimer’s disease in adulthood. But at the same time, studies have suggested that families of these children show levels of well-being that are often greater than those of families with children with other developmental disabilities, and sometimes equivalent to those of families with nondisabled children. These effects are prevalent enough to have been coined the “Down syndrome advantage.” Continue reading NYT: The Truth About Down Syndrome