Upon the Anniversary of the ADA

My son Teddy has a business selling tshirts. He sells tshirts designed by Dan Wilkins, but also his first personal design. This was designed to honor the person considered the father of the ADA, Justin Dart. Below is what Justin said when the ADA was signed and also what Teddy's new tshirt looks like. You can order these from his website, Teddy's Ts. They cost $18. and come in sizes S, M, L, XL, 2XL, and 3XL. They are Texas orange, Justin's favorite color. They say " I am with you. I love you. Lead on" Yoshiko Dart approved their design before they went into production.

ADA: Landmark Declaration of Equality By Justin Dart

President George Bush signed the Americans with Disabilities Act on July 26, 1990, a landmark date in the evolution of human culture.

Throughout all of reported history until recent decades, people perceived as having significant disabilities have been treated as sub-humans. At worst they were killed or left as beggar-outcasts to die, at best they were cared for through subsistence welfare, out of sight and mind in institutions and back rooms.

With the development of modern medicine and social responsibility, millions of 20th Century humans are surviving previously fatal conditions and living on with significant disabilities. These individuals have a great potential to be happy, productive members of their communities. However, our best efforts to fulfill this potential have been consistently limited by a massive residue of prejudice and paternalism. Our society is still infected by an insidious, now almost subconscious assumption that people with disabilities are less than fully human, and therefore are not fully eligible for the opportunities, services and support systems which are available to other people as a matter of right.

More than two decades ago many of us in the disability community concluded that Americans with disabilities would never achieve full, productive citizenship until this nation made a firm statement of law protecting their civil rights.

The Americans with Disabilities Act is such a law. It establishes a clear and comprehensive prohibition of discrimination on the basis of disability. Taken in combination with previously existing disability rights law, it provides a sound legal framework for the practical implementation of the inalienable right of all people with disabilities to participate equally in the mainstream of society. It extends to people with disabilities the same protection of their rights that is already enjoyed by the members of all other minorities.

Most importantly, ADA is a landmark commandment of fundamental human morality. It is the world's first declaration of equality for people with disabilities by any nation. It will proclaim to America and to the world that people with disabilities are fully human; that paternalistic, discriminatory, segregationist attitudes are no longer acceptable; and that henceforth people with disabilities must be accorded the same personal respect and the same social and economic opportunities as other people.

ADA opens the doors of opportunity for millions of isolated, dependent Americans to become employees, taxpayers and welcome participants in the life of their communities. It prepares the way for the emancipation of more than half of a billion of the world's most oppressed people.

I am proud of America. I am proud of President Bush, Attorney General Thornburgh and Boyden Gray. I am proud of Senators Harkin, Hatch, Kennedy and Dole. I am proud of Congressmen Hoyer, Owens, Bartlett, Mineta, Fish, Brooks and all the great members of Congress who supported ADA. I am proud of former members Lowell Weicker and Tony Coelho. I am proud of Bob Silberstein, Bill Roper, John Wodatch, Melissa Schulman, Bob Tate, Maureen West and all the great Congressional and Administrative staff who authored and fought for ADA.

I am proud of Pat Wright, Lex Frieden, Evan Kemp, Sandra Parrino, Paul Marchand,
Wade Blank, Elizabeth Boggs, Liz Savage, Marca Bristo, Judy Heumann, Arlene Mayerson
and the thousands of other patriots who have struggled for long, hard years in a
wilderness of prejudice and paternalism for the victory of ADA.

Once again America has passed the torch of liberty and productivity to the world.

All who love justice must unite in action to protect our hard won ADA rights, and to ensure that they are implemented through strong regulations, and enforced in every community.

We of the disability community must communicate to America that full compliance with ADA can be profitable for all citizens, and we must join in cooperative action with government and the
private sector to ensure that all will profit.

But ADA is only the beginning. It is not a solution. Rather, it is an essential foundation on which solutions will be constructed.

We must undertake a courageous reallocation of our society's resources from paternalism to independence and productivity. We must invest in a continuum of new and strengthened programs to liberate people with disabilities from dependency, and empower them to be equal and productive participants in the mainstream: Productivity-oriented education for all citizens. Economic, technological, independent living, vocational rehabilitation, transitional, personal assistance and community based supports for productivity and quality of life. Prevention. Affordable insurance and health care for all. Incentives for productivity to replace disincentives. Accessible communications, transportation, housing, and completely new communities that are accessible as a whole.

A large agenda? Certainly! But no larger than that which faced our patriot forefathers at the successful conclusion of the revolutionary war.

Like them, we have accomplished much. Like them, we have a profound responsibility to make a bold declaration of equality real in the lives of hundreds of millions of people in future
generations.

I believe that we will unite to fulfill that responsibility. Because I believe in you, the patriots of ADA. And I believe in you, the patriots to be.

Together we have overcome. Together we shall overcome.

Shouldn't everyone get a Vote?

Why is it that people who are deemed incompetent get no vote? Why if you have alzheimer's or dementia or have a guardian you get no vote? Important decisions are made via voting that have an enormous impact on the quality of your life. Shouldn't you have a say in those important decisions?

I am not saying that the person with dementia casts the vote, but there is a person who is that person's next of kin who could vote on their behalf. I think there should be proxy voting for people deemed to be incompetent to vote.

I know this would be a ripe situation for abuse. It would have to be carefully designed so that it was only people who had nothing to gain from having a handful of proxy votes. A nursing home logically could be considered to be a proxy voter, but they have too much to gain from having those votes.

Perhaps you would have to designate who was going to be your proxy while you still were competent in the case of age-related acquired incompetency. Designate your spouse or your adult child. And perhaps in the case of children with disabilities - that if and when they acquired guardians - that would be decided as part of that procedure.

The problem this presents is what happens if your proxy dies or doesn't stay in touch - then do you lose your right to vote?

One of the reasons (only one)I will never become my son's guardian is because I will never take away his right to vote. He votes with tremendous pride. He chooses himself how he will vote with my support to understand the issues and the candidates. Twice he has been challenged about his right to vote (and he is just 24). I doubt he would have been challenged if he didn't have Down syndrome and look so obviously disabled. How many people who actually legally do not have the right to vote - vote - because no one challenges them?

Voting is a privilege. It is how we make decisions about the future of the place where we live. It is a privilege that should be denied no one.

Is forcing a test for Down syndrome a form of genocide?

If every women who gets pregnant must have a test to determine if the fetus has Down syndrome and the stigma attached to Down syndrome is so extreme that 90% of women who know they are carrying a child with Down syndrome abort - isn't making it mandatory that all women get this test a form of genocide? I think so.

Children are not cookies made of dough that we get to shape and decorate anyway we like. We are given a gift to raise. And too many people just don't understand what a tremendously good gift a child with Down syndrome is until they've gotten over the shock and actually come to experience it.

I was listening to this Harvard professor discuss happiness on NPR. And one of the things that struck me was that he has found that there is a genetic predisposition to happiness. There is a part of the brain that exhibits a change when a person is happy. I was wondering if they could find that people with Down syndrome have a predisposition to greater happiness because their brains are different as there is substance to the idea that people with Down syndrome are happier people.

I won't say my son is never unhappy, or not even at one time been clinically depressed - but overall he is an exceedingly happy person and when crisis strikes he bounces back very quickly. And from observing kids with Down syndrome these past 23 years plus - I'd say it is a pretty universal way of being. Now how lucky is that?

So given the real struggles we face as a family including a member with Down syndrome, wouldn't I really rather not have had to deal with Down syndrome if given a choice? An uneducated choice yes. But the person Teddy is - is all wrapped up in Down syndrome. You can't separate out those parts of him - take them away- and leave behind the person who is Teddy. I think he has unique gifts to give to the world that we would no longer have. He would be just a shell of the person he is today.

So why wouldn't that be OK? He'd probably be just as extraordinary, just in different ways. But I think we need what he gives. He makes sure people remember what is important. His most extraordinary gift seems to be to help people feel good about themselves. It was a gift I saw when he was just a toddler, and became most apparent other parents requested their kids be in the same class as Teddy in elementary school. I'll always remember the mom who said that her daughter felt so much better about herself because of seeing how Teddy was happy being who he was.

Accepting everything life throws at you and still continuing on with a smile (after a few minutes of anger/sorrow) is something I wish I could do better. Teddy forgives more quickly and completely than I can ever imagine doing. I simmer and rage and rarely completely forget. He just has a momentary explosion and carries on.

Teddy is unique. He is not just about Down syndrome. But there are certain characteristics - positive characteristic that are so prevalent among people with Down syndrome that they cannot be denied - or can they - thru genocide?

Life with Teddy

Teddy is the light of my life and my greatest consternation. I do so wish I understood his world as he does. I try, but I end up not being able to imagine how he is as compassionate as he is and also can't do things so many things he seems so close to doing.

OK, none of this make sense unless you know Teddy. He turns 24 next Friday and there is a part of him that is inextricably 24. He spends his time thinking about sex, politics, music, and sports - in various orders. He keeps his stuff neat and clean without discussion. He does his own laundry and never has to be reminded. He cooks dinner many nights and tells me what we need from the grocery store. He is a very responsible young man.

But he is also more like a young teenager - he sleeps for as many hours in a day as I allow. On the weekends it in not rare for him to sleep 12-14 hours. Who needs that much sleep? He goes off to camp for a week- with a weeks worth of clothes - and most of them come back clean. His desires for the future are more like what a young teenager aspires for - a red corvette, a hot girlfriend, his own house with a pool and a place for guys to hang out, and have a business where he goes to an office and does little more than answer phones. Just a tad shy of realistic.

He is also like an older child. He adores me and tells me everything that happens in his life. There are no secrets. He likes to snuggle. He likes to draw pictures. I still have a bit more influence than his peers. He still enjoys me singing the songs I have sung him since he was a baby. This part of him I never want to let go of, but imagine someday I might just have to.

And he is also like a very young child. He can't read and can't make sense of why I seem so aggravated that he doesn't see the consistency that letters in words present. He also can't do math- actually it is more he has very little sense of numbers. Ask him to bring you three things and he is just as likely to bring 2 or 5 as 3. And he cries. Not just cries. But cries in utter despondency over TV shows and movies, hurt animals in the road, accidents we pass by - and if it is more personal it takes him over for days.

Sometimes I feel like I live with a whole bunch of people. But it is just Teddy.

Some of this can be attributable to Down syndrome, but some of it cannot. Some of it is attributable to my hard work trying to support him being the best he can be, but some of it is just who Teddy is. Sometimes I look at my son and marvel at who he is - and other times I look and want to cry because I know what a struggle he has ahead to have the life he wants. My son is the best thing that ever happened to me. Through this blog I expect you will get to know him very well.