Tuesday, March 24, 2009


She's a beautiful 10 years old. Thick curly black hair frames an impish face transitioning between little girl and young woman. I know her mother, and indeed her whole family, is working to teach her boundaries. Little girl close up hugs are now for family alone. She may really like those who care for her, but it's time to show affection differently.

She is standing right beside a very handsome Latino man barely 10 years her senior. They've known each other for a long time, she desperately wants to hug him, you can see it. He smiles down at her, she grins up at him. Small for her age, he seems like a giant beside her. He knows that the rules have changed as she has changed. She only sort of understands why things are different. She leans towards him as if she was resting against the 'bubble' that is his personal space.

I'm moments away from teaching a group of 50 people with disabilities about abuse prevention. I'm inspired by this moment of wonderful parenting. I'm inspired by a little girl who is learning, right on time, right on schedule, how to be a young woman. I'm inspired by a young man who is careful to show that he still cares, but does it in a way that keeps her safe.

It's possible ... really possible ... for little girls with Down Syndrome to grow into healthy adulthood. All they need is guidance. Like all little girls, in all families. For a moment I believe that the world I want to live in is possible.


Jen said...

Let's hope that it is. My kids are 13 now, and we're in the middle of a very long road trying to help keep them safe and healthy and make sure that they have all of the tools that they need to stay that way. Things sure get a lot more complicated around puberty.

adrienne lauby said...

More on Obama's gaffe-- I like this organization a lot. I don't know if it's active in Canada.

ADAPT Urges Obama to Apologize, then Move Forward with Disability Policy Agenda

Washington, D.C.--- In the wake of President Obama's unfortunate comment on his low bowling score as reason to include him in the Special Olympics, ADAPT urges the President to publicly apologize to the millions of people with disabilities who were offended by the stereotype, and then move on.

"While I am convinced the President did not intentionally set out to disparage people with disabilities," said Bob Kafka, national organizer for ADAPT, "the remark that flew out of his mouth is so indicative of the deeply held and, until now, widely tolerated stereotypes of people with disabilities. Look at all the people who laughed. These stereotypes have resulted in our exclusion from the mainstream of society and have kept us locked up and segregated in institutions and nursing homes."

In an ironic turn of events, just prior to his appearance on the Jay Leno Show where the remark was made, the President strongly addressed employment of people with disabilities at a Town Hall meeting in LosAngeles. President Obama minced no words when he said, "So one of the things that I think is important is to make sure, as you pointed out, that we don't see this as an afterthought, a segregated program, but we are infusing every department, every agency, every act that we take with a mindfulness about the importance of persons with disabilities, their skills, their talents, their capacity."

"Actions speak louder than words, so ADAPT challenges the President to make good on those welcome words by advancing and promoting a strong disability policy agenda," added Kafka. "One that includes community-based long-term services and supports in health care reform, and assures that people with all disabilities of all ages have the opportunity to live, work, go to school, and recreate in their communities alongside their neighbors. People with disabilities have so much to contribute to the fabric of American life, but we can't do it locked away or shunted aside in segregated environments."

ADAPT will be in Washington, D.C. April 25-30, working for passage of the Community Choice Act (CCA), and celebrating the 10th anniversary of the U.S. Supreme Court Olmstead decision. In deciding Olmstead, the Court affirmed the mandate in the Americans with Disabilities Act that says services to people with disabilities must be provided in the most integrated setting.

As part of the Olmstead celebration, ADAPT will hold its annual Fun Run in Upper Senate Park on April 26th, where the National Fun Runner will be Lois Curtis, one of the two plaintiffs in the original L.C. and E.W. vs. Olmstead lawsuit. Since being freed from a Georgia institution, Curtis has gained recognition as an artist, and will bring an exhibit of her work with her.

During its week in Washington, ADAPT wants the President to meet with a small group of representatives to discuss the inclusion of the Community Choice Act/long term services and supports in health care reform, and how best to work together to finally gain real, national implementation of the ten-year old Olmstead decision.

For Immediate Release:
March 23, 2009
For Information Contact:
Bob Kafka 512-431-4085
Marsha Katz 406-544-9504

Elizabeth McClung said...

It must be very difficult, I know that you have studied it for so long that you can see good examples and bad ones; but for those of us who don't have those spectacles, how to we care enough to be vigilant for abuse, and yet let parenting occur without being apathetic? I like the story but to me it highlights how difficult it is unless you are attuned to it, to see that bubble to see that safe space, to see that guidance.

Anonymous said...

I watched with pride the same scene with the beautiful ten year old little girl/young lady. You see, she is my daughter. My precious daughter who we have for so very long reinforced boundaries over and over and over and over again. I hope you get my point. Don't give up, ever. Our loved ones will learn this. They just take longer.