What an honor it was to represent NCLD at the White House to commemorate the 20th anniversary of the signing of the Americans with Disabilities Act! It was energizing to hear Patti LaBelle sing "New Attitude" and watch the talented and beautiful Marlee Matlin sign an impassioned speech about love and the example Helen Keller is to us all. Of course nothing topped the moment that America's President regally walked onstage to deliver an eloquent speech and said...
Today, as we commemorate what the ADA accomplished, we celebrate who the ADA was all about. Sit-ins in San Francisco. Demonstrations in Denver. Protests in Washington, D.C. People marched, and organized, and testified. And laws changed, and minds changed, and progress was won. You knew from your own experience that disability touches us all. If one in six Americans has a disability, then odds are the rest of us love somebody with a disability.
As I sat among my heroes — the resilient fighters that have lobbied, argued, anguished and dreamed of a country that views all people as "able" — my feelings ran the gamut from sheer admiration, excitement and respect, to somber reflection of where we have come collectively in our society, and how far we still have to go. This myriad of emotions surprised me and also reminded me of the very real connections I have to these fighters, and to this fight.
In 1928, my father, Lloyd Winward, was born with double club feet and several other birth defects that doctors said would surely end his life. Despite this burdened beginning (before medical technology had advanced to know what to do with babies born with club feet) - he endured many hardships which included wearing casts on both legs until he was eight, multiple surgeries and feeling rejection when he was told he couldn't attend the local country school because he was "crippled"— my grandmother made up her mind to do everything she could to help him thrive and achieve his potential. Hannah Winward was the original parent advocate.
Later, after years of treatments and surgeries, he made a big decision to have one of his deformed feet amputated to increase his chances of continuing to walk. At the age of nineteen, he began to wear a prosthesis that he strapped onto his soft, rounded stump each morning. By the time I came along (number five in a family of six), he was running a successful accounting practice, supporting a middle-class lifestyle for us, and providing leadership through civic, state and international organizations.
As I think back, I don't remember using the word "disabled" or "handicapped" in my home. Dad's prosthesis was ‘his leg.' Sometimes we impatiently waited on Christmas morning for him to lace it so we could rush into the living room together, or when cleaning we'd see the spare in the closet and say "there's Dad's other leg." but we never thought about it as something negative.
There were things he couldn't physically do with me (ride a bike, snow ski, mow the lawn) but he made up for it by helping with homework, teaching me to drive a stick shift, shoot a shotgun or speak with confidence (and proper grammar) so I could win my speech and debate meets in school. He was also incredibly patient, soft-spoken and kind. It wasn't until I was a teenager and I heard a group of kids refer to him as "limpy Lloyd" that I realized some people didn't view him the way I did. At the heart of it though, I knew it was their problem and they just couldn't see past his gait.
Throughout his life, he did have physical pain and challenges that he didn't openly share or dwell upon. My mother would often tell us that he had spent a sleepless night rubbing his stump. He refused most pain medications (this was related to another birth defect - he only had one kidney and he wanted to take care of it); however, he never complained. With his perseverance, can-do attitude and infectious optimism he was truly one of the best examples of resiliency that I know.
So, as I looked around on the South Lawn of the White House at the array of people listening and sharing the moment with President Obama, I saw my colleagues and others with their seeing- eye dogs, wheelchairs, canes, assistive listening and speaking devices, interpreters and other aids — I just couldn't help but think about my Dad. I thought about his gift to me in knowing that nothing is impossible and that we each have an innate ability to do something well. I strive to insert that into all we do for kids and families at NCLD every day. President Obama ended his time with us by saying:
Life. Liberty. The pursuit of happiness. Words that began our never-ending journey to form a more perfect union. To look out for one another. To advance opportunity and prosperity for all of our people. To constantly expand the meaning of life, liberty, the pursuit of happiness. To move America forward. That's what we did with the ADA. That is what we do today. And that's what we're going to do tomorrow — together.
So here's to my first hero, my Dad — the man that taught me about advancing opportunity and understanding that life is about "ability." Here's to the parent advocates that are heroes every day and here's to another twenty years of progress. Let's work together to speed up the positive outcomes and benefits for the 15 million people with LD. I can only imagine how much we will be celebrating in 2020!