A Call to Action: Timothy Shriver’s ‘Fully Alive’

Last month, Timothy Shriver’s memoir Fully Alive, Discovering What Matters was released. Shriver is the executive director of Special Olympics, an international organization in 170 countries that was started by his mother Eunice Kennedy Shriver in 1968.

Mr. Shriver has had the likes of Deepak Chopra, Martha Beck and Annie Lamott positively rave about the book. He was a featured guest on Oprah’s Soul Sunday along with countless other television and print media interviews. He is everywhere right now. With all that coverage he doesn’t actually need Thorin’s mother to put in her two cents but I am going to anyway because I think this is an important book.

At the heart of the book is Shriver’s spiritual search for a meaningful and purposeful life which he finds through the lives of people we have deemed the most meaningless—those individuals with intellectual disabilities.

The soul of the book is Rosemary Kennedy, his late aunt. Her tragic story is that of a woman who lived in the world with “mental retardation” to becoming a victim of the barbaric practice of lobotomy and institutionalized for over 60 years. As a parent of a child with Down syndrome it is almost unbearable to read her story. For someone who has never loved someone with cognitive challenges it should be mandatory reading.

‘Fully Alive’ has a little something for everyone. It is an insider’s view of the Kennedy family history including one of the funniest scenes in the book: Eunice Shriver forcing Jackie Kennedy to wrestle with her on a kitchen floor.

Shriver covers the beginnings of Special Olympics. He offers an extensive history on the treatment of people with cognitive disabilities through the lens of philosophical insight.

He shares dramatic vignettes of some of the Olympians during his tenure. There are many highlights here but I want to select a few that surprised me:

Eunice Shriver was a powerful political strategist. She traveled the country visiting institutions that warehoused people with cognitive disabilities and deemed them abominations. Then she did something about it. She helped formulate policy based on her then radical assumption children with disabilities should be treated like everyone else.

She shared the story of Rosemary publicly when it would have most impact for moving forward her agenda.

She started Camp Shriver, which was the precursor to Special Olympics, in 1962 at her home. Each summer children with disabilities came to experience acceptance and respect in the forum of athletic participation.

She referred to herself as someone who “taught swimming to children”. That too was strategic is my guess. Who would believe a mother—even one who was a Kennedy—could be possible of such foresight? It was also probably a sucker punch in the gut to anyone who got in her way. Shriver defines his mother’s creation of Special Olympics aptly as a revolution.

This book is not about parents. Correction it is about parents but only in relation to their children rather than the reverse narrative. Shriver does not live in the well of sadness instead he relates all the individuals he encounters by their accomplishments and strengths. He accepts disability as part of life not a condition that separates ‘us’ from ‘them’. One story is emblematic of his commitment to serve the person who has the disability.

He receives an email from a father desperate for help with his infant daughter who was born with Down syndrome. The family had received the opposite of support. They are told how hard life will be for them. They are told it would be better if their daughter was dead.

Rather than joining with the father at grief he joins with him at hope: “On the behalf of the whole of Special Olympics movement around the world, I want to congratulate you on the birth of your daughter. I am sure she is wonderful. I know you will be very proud of her for many years to come.”

He also offers and follows through on help to this family.

Shriver does an exquisite job delineating the “tyranny of normality” that ensures people with cognitive disabilities will suffer from loneliness and isolation simply because ‘we’ cannot abide their difference.

I found a role model. I had never heard of Loretta Claiborne. Her early path is diverted from languishing in an institution to being a Special Olympics (SO) athlete, a staffer at SO, a powerful TED presenter and an accomplished runner who finished in the top 100 women in the Boston Marathon. A terrific scene in the book is her taking on Shriver. He describes himself fuming at staff in preparation for a visit from the governor. In the midst of him barking orders Claiborne’s advisement to him is to remember “…the governor puts his pants on in the morning the same as you.”

Her egalitarian attitude is likely a big part of how this African-American woman with a cognitive disability could confidently hold her own anywhere. You are left to wonder what if she had never realized her full potential. You are sickened to think how many people with cognitive disabilities have never been given the chance to reach theirs.

Shriver is a passionate, committed and dedicated leader. He is also angry—really angry– about the injustice done to people with cognitive disabilities. Hallelujah! My biggest criticism of some of some of the disability organizations is that they are run more like charities than serving as the powerful agents of social change they could be. Shriver’s book is a call to action for continuing the fight to secure civil rights for those with cognitive disabilities.

I have often gotten the feeling from many professionals who have worked with our son that they know nothing about the struggles that have been heaped on people with cognitive disabilities. They are not ‘fully alive’ with the understanding that my son has the same universal need for acceptance that they do.

Unfortunately their understanding of my son is through the narrow lens of disability and never understanding he has tremendous ability. I hope someone buys them this book.

 

 

You Get The One You’re Supposed To

I have written about how we found the awesomeness that is Thorin on this blog but it was almost five years ago. If you never traveled back into the archives you may have assumed Ward and I were a couple on the look out for a child with Down syndrome. The truth is different than that. Louise Kinross, the editor of BLOOM, a magazine on parenting children with disabilities, asked me if I would write about how we came to find Thorin. So I did.

I direct you to her site, Bloom, to read our story: You get the one you’re supposed to

Kudos to The New York Times for Championing Diminished Voices: Judith Scott and Ethan Saylor –

I have had my issues with The New York Times, including its employees, with regard to people with cognitive challenges and Down syndrome, in particular.*

This week I only have love for The Times. On three occasions this past week they not only got it right with regard to people with Down syndrome, they set the bar on how to do it.

The first came December 1st, from Lawrences Downes, of the paper’s Editorial Board, on the Opinion

Judith Scott

Judith Scott

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Downes wrote about Judith Scott, a deceased artist, who has a current show at the Brooklyn Museum of Art. She also had Down syndrome.

An Artist Who Wrapped and Bound Her Work, and Then Broke Free is a masterful piece on art, disability and civil rights. If it were possible to win an award for one sentence it would be this one:

“Sometimes, rarely, one among them hits the cosmic lottery and breaks through on her own.”

Downes is poetically reminding us we are dismissing a multitude of human potential because we simply do not believe these people capable of anything.

On December 4th, Holland Cotter, art critic at The New York Times, Art & Design, Review, Silence

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Wrapped in Eloquent Cocoons: Judith Scott’s Enigmatic Sculptures at the Brooklyn Museum:

Cotter’s powerful review of Ms. Scott’s exhibit is predicated on the assumption she is an artist with an intended vision rather than a person who is accidently creating art. His one sentence award would be for proclaiming that:

“…Ms. Scott emerges as the complex and brilliant artist and person she was.”

My jaw dropped. When has anyone– with authority– ever said a person with Down syndrome could be “complex or brilliant”? As an art critic, Mr. Cotter was simply giving his expert opinion but in doing so he is challenging a world-view that demonstrates otherwise.

The New York Times published another seemingly unrelated piece December 4th, It Wasn’t Just the Chokehold: Eric Garner, Daniel Pantaleo and Lethal Police Tactics, The New York Times Editorial Board.

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Ethan Saylor

The author correctly drew a comparison between the death of Eric Garner with that of another death not so widely known:

“Mr. Garner’s death recalls a similar tragedy involving a less familiar name: Robert Ethan Saylor, a 26-year-old man with Down syndrome who was killed last year in a struggle with three off-duty county sheriff’s deputies at a movie theater in Frederick County, Md.”

The gravity of this observation is that in a world where people with Down syndrome are mostly excluded from participation we are forced to realize that inclusion unfortunately also means they are over-represented as victims of violence.

I invite you to not only go read these pieces immediately if not sooner, but share them widely. This past week at The Times was one in which people with Down syndrome were acknowledged as belonging in our world. This is so exceptional anywhere in the world it bears a legacy.

*An Open Letter to Chuck Klosterman, The New York Times, Ethicist and Forget About Richard Dawkins I Have a Bone to Pick with The New York Times.

I have been fortunate to get positive response from my concerns: Chuck Klosterman’s response to my letter and Readers Protest ‘Hate Speech’ in Comments Section on Down Syndrome.