Friday, July 27, 2007

What our presidential candidates say about the ADA

If you know of others who made announcement related to the anniversary of the ADA - please feel free to add them. THANKS.

CLINTON: See previous post- I'm voting for Hillary


CHICAGO, IL Senator Barack Obama today released the following
statement on the Seventeenth Anniversary of the Americans with
Disabilities Act (ADA):

"On July 26, 1990 the Americans with Disabilities Act (ADA), a law
that aimed to ensure that Americans with disabilities have equal
access to the American Dream, was signed into law. As a former
civil rights lawyer, I know firsthand the importance of strong
legal protections against discrimination and an abiding commitment
to equal opportunity. As we celebrate the ADA's anniversary today,
we must also re-commit ourselves to strengthening the law and
enforcing it more vigorously and effectively.

"The ADA declared that people with disabilities are welcome
throughout American society. The ADA assumed, rather than doubted,
that people with disabilities can be productive workers
contributing to our economy and the support of their families.
Perhaps most important, the ADA was a formal acknowledgment that
people with disabilities are American citizens with the same
rights as other Americans: a right to belong, a right to
participate fully in the American experience, and a right to have
dignity and respect in the workplace and beyond.

"This right is not just something to celebrate today, it's
something we must work to uphold in the months to come. We must
overcome the Supreme Court decisions that have weakened this right
by making the ADA Restoration Act the law of the land a law that
will bring us closer to the ADA's ideal of barring discrimination
against anyone on the basis of disability."

SOURCE: Obama for America


Calls for strengthening the law

Chapel Hill, North Carolina – On the eve of the anniversary of the Americans with Disabilities Act (ADA), Senator John Edwards called for Congress to pass new legislation strengthening the ADA. At the same time, Edwards' campaign announced that he had been endorsed by several prominent leaders in the disability rights movement.

"As we prepare to celebrate the 17th anniversary of the landmark Americans with Disabilities Act, we must reclaim the ADA. Hostile, conservative judges have put new barriers in front of Americans with disabilities who seeking nothing more than the right to work and live with dignity," said Edwards. "Congress should pass the ADA Restoration Act to ensure that the law remains consistent with Congress' original intent and restore civil rights protections to people with epilepsy, depression, diabetes, cancer and other conditions."

Edwards has long supported initiatives to break down the barriers that separate people from disabilities from opportunity in America, including:

  • Enforcing the right of every child to receive a free and appropriate education in schools that are fully accessible.
  • Creating new internship and mentoring programs that break down barriers for young people making the transition from school to work.
  • Providing accessible transportation so people with disabilities have a way to get to work.
  • Making the federal government a model employer to lead the way toward a fully-inclusive American workplace.
  • Securing the rights of people with disabilities to live independently with the services and supports they need, which is essential to guaranteeing equal opportunity.

Edwards is also committed to including closed captions on all campaign television advertisements and is in the process of captioning all videos on The campaign's Web site is designed to be accessible to all visitors.

"Many people with disabilities live in poverty because they are denied full and equal opportunities in education and employment. Their transportation needs are ignored. They also face discriminatory and dehumanizing inequities in health care," said Laurie McCray, New Hampshire parent advocate. "I am confident that as president, John Edwards will be a strong and compassionate advocate for people with disabilities so they can have successful and meaningful lives."

California Democratic Party Disabilities Caucus Chair August J.P. Longo said, "Senator Edwards never forgetting to include people with disabilities in his speeches and platform tells us that he will not forget us in his Administration."

"During the days when ADA was being considered I wrote to Senators and Representatives regarding this important legislation. Now as we celebrate the anniversary of the ADA I can say that I did that. That is the type of action that John Edwards inspires all of us to take" said Jon Raiss, Michigan Democratic Party Disabilities Caucus Chair.


Thursday, July 26, 2007

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

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.

Wednesday, July 25, 2007

I am voting for Hillary

When Hillary Clinton answered the AAPD questions I got off the fence and decided she would have my vote. Today I know that was the right decision. She announced specific plans to increase employment opportunities for people with disabilities. Two things I am most impressed with:

  • Providing More Technical Assistance for Employers. Many employers are hesitant to hire people with disabilities because they are unsure about the accommodations necessary to enable successful work. President Bush has not kept his promises to fund programs that remove employment barriers that keep people with disabilities from work. He has cut funding for the Office of Disability Employment Policy by 41%, and his current budget proposes to cut the Office by an additional 34%. As President, Hillary Clinton will restore funding to the Office of Disability Employment Policy, with an emphasis on giving employers the tools to effectively employ people with disabilities. She will establish a new technical assistance resource center to provide real-time support for employers and help them link with local resources to implement workplace accommodations.
Workers with disabilities face extra costs for accessible technologies, transportation, and support service workers. These additional expenses amount to a regressive tax for workers with disabilities, so the federal government must work to offset these costs. Hillary Clinton proposes a $1,000 refundable tax credit to help offset additional expenses for workers with serious disabilities and moderate incomes.

Both of these items demonstrate to me that Hillary understands what people face when they are prepared to be employed and yet aren't because employers anticipate the accommodations they need to be too difficult to provide and that once employed their income is diminished by the extra cost to be employed.

This last one for me is important. I am not on SSI or SSDI and my income is far from substantial. But to work I must have a scooter. Each year it seems to need a repair of some sort, and a new set of batteries. It rarely adds up to $1,000, but is it enough that it sure puts a dent in my pocketbook. Most of the things related to my inability to hear well are paid for by work, but there have been things I use at home to work that they haven't. And I use my son as an unpaid PA, which could be rectified.

So Hillary, at least for the moment, you have my vote!

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.

Where the similarities in the history between being 'only' Black or Disabled in the USA stop

I will come back to this as I think on it more - but I've been thinking on the similarities between the history of people who have disabilities and who are originally slaves from Africa.

Both have been taken from their communities of origin to live far away
Separated from the families they love
To work for no pay
Raped and abused by the people they are entrusted to
Forced to give up their children, be sterilized, and to abort
Not be allowed to learn
Considered less than fully human
Disenfranchised to vote
Not permitted to sign contracts
Not allowed to marry
Given substandard, if any, health care

I'm sure there are more.

The difference I see is that far too little of this has changed for far too many Americans with disabilities, while all of it has changed for the (eta) nondisabled descendants of slaves.

Tuesday, July 24, 2007

Stranger in a Strange Land

An interesting video I caught on Pitt Rehab. Much like a film I had at my film festival a few years ago called "I am not from Hear". What would it be like it everyone but a minority had a disability and the world was geared to us with disabilities rather than the reverse?

ADA Restoration Act

The ADA may not be a perfect civil rights document, but its initial imperfections have been inflated tenfold by the changes in the way it has been interpreted. It is no longer being enacted in the way it was intended. Right now the ADA still offers people with disabilities important rights that without their status as equal citizens would be jeopardized. Without the ADA there would not be an increasing number of curb cuts in every city, or public TTYs in public buildings, or new voting machines that have given people their right to vote privately for the first time in their life.

What the ADA has been unable to accomplish has been in large part due to its major flaw - that to get the ADA enforced one has to go to court before a judge who will decide what the ADA says. Judges across the nation have interpreted the ADA and what constitutes a person with a disability differently. They are not ADA experts. They have generally decided to look at the language of the ADA as exact - the law must be followed precisely. But when written the ADA was written as a guideline to given people an idea of what made sense. Every situation that could confront a person with a disability could not be described in one document - so the ADA only suggests broad parameters.

Please, if the ADA is as important to you as it is to me, read the following and act!

Ask Your Representative to be an
Original Cosponsor of the ADA Restoration Act of 2007!


This Thursday, July 26, marks the 17th anniversary of the Americans with Disabilities Act (ADA). On this day, the ADA Restoration Act of 2007 will be introduced by chief cosponsors Representatives Steny Hoyer (D-MD) and James Sensenbrenner (R-WI) to restore protections for Americans with disabilities under the landmark law.

Despite the ADA's intent to create a level playing field in the workplace, the full promise of the law has never been fulfilled. In recent years, the Supreme Court has slowly chipped away at the broad protections of the ADA and created a new set of barriers to employment for people with disabilities.

Courts across the country have been quick to side with businesses and employers, deciding against people with disabilities who challenge employment discrimination 97% of the time, often before the person has even had a chance to show that the employer treated them unfairly. Indeed, courts have created an absurd catch-22 by allowing employers to say a person is too disabled to do the job, but not disabled enough to be protected by the ADA. For example, people with conditions like epilepsy, diabetes, hearing loss, and mental illness that manage their disabilities with medication, prosthetics, hearing aids, etc. or mitigating measures are viewed as too functional to have a disability and are denied the ADA's protection from employment discrimination.

This is not what Congress intended when it passed the law and President George H.W. Bush enacted it into law in 1990. The law was intended to be broadly - not narrowly - interpreted.

The bipartisan ADA Restoration Act will amend the ADA to require courts to focus on whether a person has experienced discrimination "on the basis of disability," rather than requiring individuals with disabilities to first demonstrate that they are substantially limited in some major life activity.

Disability advocates have been working tirelessly for the last several years to restore the original intent of the ADA by meeting with Members of Congress, collecting stories about disability discrimination and ADA success stories, issuing a petition to support the ADA Restoration Act, and leading a bus tour that has traveled more than 13,000 miles in 28 states. We need your support now more than ever.


On July 20, a "Dear Colleague" letter was sent by Representatives Hoyer and Sensenbrenner to all members of the House of Representatives seeking original cosponsors before the bill is introduced next week on July 26.

Take Action

Call your Representative TODAY and ask him/her to cosponsor the ADA Restoration Act now! Our champions need to have as many original cosponsors as possible to make a good showing on introduction.

Monday, July 23, 2007

Discomfort with my values

I've been communicating with a woman and now her boyfriend on my sex support site about her various medical conditions and my concern for their child. As her boyfriend gets more detailed about her various mental illnesses (she is an anorexic cutter with borderline personality disorder who is now in hospital with myocarditis) - I find myself saying things I feel need to be said to protect the child, but feel very unaccepting of the mom and who she is.

Can a woman with a mental illness be a good mom? Of course she can.

Is this still true if she refuses to get counseling or medication to help her, and facing serious medical complications, and is having suicidal thoughts? I'm not sure, but I think not.

If you support a person's right to refuse to be mediated or to get counseling when they have a mental illness (as I do) - then why is it different when she has a child? Does a seven month old child trump what a mom thinks is best for herself?

Is it the responsibility of a woman who is a mother to subject herself to medication and counseling if she becomes a mom? If she thought it was best for her before she became a mom why is it different after she becomes a mom?

Is it ok to take risks when you don't have another person to be responsible for? but what if what the medications do to you is an unacceptable risk and you think they will make you a bad mother?

Is it OK for a mom to feel suicidal? Is it OK to be a cutter or a have a diagnosis of some sort and refuse treatment, but once you feel suicidal that means you have to accept help?

If you have a history of feeling suicidal, should you not be allowed to have children? Does everyone have the right to conceive, to parent? Is it unfair to prevent a person who hasn't done anything wrong except to happen to have a mental illness from having a child? Isn't that like punishing someone for what you think they will do rather that what they have done?

But then there is the child.

Do we as a community of adults have the responsibility to take educated guesses about how fit a person is to parent? If that is the case then what other people should we make educated guesses about? - women who are poorly educated? women who are racist? women who are unmarried? women with labels of mental retardation?

How do we know who makes a fit parent? I am sure there are women who fit every "typical" label that exists and can still not be good at parenting. Or can anyone be a 'good enough' parent if we all surround our children in our communities with support? Is it too much to expect any mom to do it all?

So is the answer for this mom I am trying to help is to say - it is your choice not to get treatment, it is your choice to live with your mental illness without medication, but if that is your choice you have to accept help/ intervention from the community that is concerned with the welfare of your child? I wish I knew.

Hate Crime Bill

If a person deliberately harms you because you are of a particular race,
it is considered a hate crime and they are prosecuted for a hate crime
in addition to whatever other crime they committed. No so if you are a
person with a disability. If your very existence pisses a person off and
they decide to harm you, it is still a crime, but only a crime for the
crime act, not the intent behind it. So a person might be willing to
risk the penalty for a simple assault, but not be willing to risk the
penalty for a simple assault AND a hate crime. It also demonstrates to
the community at large that this government is serious about protecting
people with disabilities - even if it doesn't always appear so by other
laws and regulations we enact or don't enact or enforce.


Urge your Senators to Enact the Hate Crimes Bill
Take Action!
Calls needed TODAY!!!!


Last week, Senators Edward M. Kennedy(D-MA)& Gordon Smith(R-OR)
filed S.1105, the Matthew Shepard Local Law Enforcement Hate Crime
Prevention Act of 2007 (LLEHCPA) as an amendment to the Dept.
of Defense (DOD)reauthorization bill currently being considered on
the Senate floor.

The LLEHCPA, already passed by the House of Representatives will,
for the first time, allow for the federal prosecution of hate crimes
based on disability, as well as gender, sexual orientation and gender
identity.It will also provide local police and sheriff's departments
with vital federal resources to address hate crimes on a larger, more
inclusive scale.

The DOD reauthorization bill vote could happen any time, most likely
this week after the Iraq war debate. Thus, it is imperative that we
communicate NOW with Senators urging them to move the K-S
Hate Crimes amendment on the DOD reauthorization bill. Without the
LLEHCPA, crimes committed against people w/ disabilities SIMPLY
BECAUSE THEY HAVE DISABILITIES may continue to go unrecognized,
unprosecuted, and unpunished.

Take Action

ACT NOW! Call your Senators TODAY at 202-224-3121 & urge
them to support S. 1105, the Matthew Shepard Local Law
Enforcement Hate Crime Prevention Act of 2007 (LLEHCPA)
and to ensure that the Kennedy-Smith Hate Crimes
Amendment is passed as part of the Department of Defense
reauthorization bill.

Sunday, July 22, 2007

Disability Pride Parade

It was a wonderful parade - the best ever. But I am disappointed. I know there were going to be some people there I know online. But we didn't make any exact plans to hook up and we didn't. We might have seen each other- but since it isn't a conference - no one wears name tags. I also forgot my camera. I have a camera on my phone, bt sadly I just couldn't get any good pics with it. I do have a few - if they look any good bigger I will post them.

I have no idea how many people were in the parade - countless. People in chairs, scooters, on crutches, with dogs, on bikes, sitting on floats, and walking. Everyone is happy! (Except possibly some of the parade volunteers - who like previous years all seem to be overwhelmed with the stress of it all ). People are excited to meet friends they know from far away - or close by. New people hook up with like-minded agendas.

I was impressed with the float ahead of us. It was a group of people with various Hispanic ties - most, but far from all had developmental disabilities. Latin music was played full blast which gave everyone the inspiration to dance. Everyone held flags - many from the country of their origin. Somebody gave Teddy a flag - which interestedly enough just happened to be from Puerto Rico where his birth grandparents were born.

This year I noted two things - Justin Dart was brought up many times (well-deservedly so) and appears to have clearly taken the role of the creator of the current flavor of disability pride. And Not Dead Yet has taken over as the most popular self-identifying slogan. As a self-identifier it seems to represent the idea if that we do not want to live in institutions like nursing homes - that is where people go to die and we are not ready to be dead yet, nor are we dead yet - so support us living in the communty.

Teddy sells tshirts at the parade and Not Dead Yet was clearly the front runner as the most requested tshirt. Teddy has a new design that has Justin on it ( fully approved by his widow Yoshiko) and that was the best seller of the day. (We were out of Not Dead yet shirts.)

The most impressive part though was the entertainment. I can't say I liked all of it, but there were some really stellar performances. A dance troupe that was people of mixed abilities, including 2 chair users was stunning. There was a discernable change in the crowd when these women danced. No one could keep their eyes off their fluid graceful movements. There was a group that sings using sing language. It was beautiful to watch and makes me regret not keeping up with or improving my signing. Even without understanding the signs, you understood the intent of the music. And there was Sarah Triano's hop hop raps. She is either improving or I am getting my ear tuned to rap. Each year Sarah raps to a rapt audience and must say that in previous year although I thought what she did was clever - it didn't really excite me. This year was diffferent - loved every rap - and wanted to hear more. (BTW Teddy got on stage with his friend Micah and another young woman with Down syndorme and they danced as Sarah's back-up.)

All in all it was as is always a wonderful, eneergizing place to be. It still does not have the feel of a national parade like I wish it would - more and more people and organizations are coming from afar, but not enough to make it feel like we have come along way to travel 240 miles.

July 26, 2008 That is the date of next year's parade. Put it on your calendar now. Start saving your money so you can afford to go . (There is an inexpensive youth hostel that anyone of any age can stay at - that is accessible.) You won't regret going -and I am going to be sure people I want to meet are going to be wearing name tags!

Wednesday, July 18, 2007


Why is that word so bad? It is a word like many others we label too egregious to even spell out or say - "the N word". It is a word that segregates you. Isolates you. Demeans you. Relegates you to a category without an identity. Makes you less a person. Takes away your rights. Makes you fear the person who says it. Takes away your your dignity. Destroys your ego. Allows people to do things to you without your permission.

The history behind the word retarded is nearly as long as nigger. (No, I am not afraid to write the word. To me calling it the N word does nothing to diminish its power.)

Mental retardation has existed for all eternity. (Skip reading this if you hate history.) In 1876, the American Association on Mental Deficiency was formed - in about 1978, deficiency was changed to retardation and in 2007 to intellectual and developmental disability. In 1910, words in common usage were feeble-minded (a generic term), idiot (under 2 in development), imbecile (2-7 years), and moron (7-12). In 1959, new words were adopted - borderline MR (IQ 67-83), mild MR ( 50-66), moderate MR (3-49), severe MR (16-32), and profound MR (under 16). In 1973, borderline MR was eliminated as a label, but mild MR was raised to 70. In schools however, other terms were used - educable (could learn up to grade 4 tasks), trainable (learn self-care only), and untrainable.

It doesn't matter which word you use- they all do the same thing. They classify you in a substandard category of life. They allow unspeakable things to be said and done to you. They allow people to expect less of you than others - not only expect less - but give you less opportunity to have access to what would help you be less like what they say you are.

My son Teddy can't read. At 24 you'd think I'd given up. But periodically I read about some new way to teach, or he expresses anger at not being able to read, and I try again. I expect I will never give up on his learning to read. There are those, even those I love, that think this is a wasted effort. Better to spend time on doing things he can do. But he learns more slowly at a different pace, retardedly if you will, and how am I to know at which point he might have caught up and now is ready to read unless I keep giving him the opportunity to learn? I refuse to accept his being labeled as mentally retarded as meaning he has stopped changing, growing, and learning new things.

The horror for me of the word retarded is the little box it puts you in. For some, too many, a little box you can never escape. For others it is just a shout across the playground, where a person gets plopped into the box until they can worm their way out. But at what cost? Much too high a cost.

Blogger Tag

I read David Hingsburger's blog and today he posted " I haven't heard of blogger tag and was surprised to be 'it'. The rules, yes there are rules for everything ...

Here's the rules.

1. Let others know who tagged you. (David Hingsburger)

2. Players start with 8 random facts about themselves. (see below)

3. Those who are tagged should post these rules and their 8 random facts. (here they are)

4. Players should tag 8 other people and notify them they have been tagged. (hmmmm)

Random fact 1: I hate summer. It is too hot and I can't take off enough clothes. If I was a man I am sure I would like it better - that or lived in a nudist colony.

Random fact 2: For the first 18 years of my life my favorite color was yellow. I hated pink. I think I loved yellow because it was gender neutral. When I discovered it was good to be a woman I began to love pink - and still do.

Random fact 3: I have an enormously long gum wrapper chain I made when I was 14. Over time it has disintegrated, but I still have around fifty feet of gum chain. I try to throw it away periodically, but, but, but....!

Random fact 4: My son's real name is not Teddy - but everyone has always called him that. He was named, when adopted, after my beloved dalmation-sheepdog, who I named after a character in Winnie the Pooh.

Random fact 5: When I was very small I was a redhead, then my hair turned yellow blonde, then it turned what we called dirty dish water blonde, then brown, and in my twenties started to turn silver. So I dyed it red. I stopped when I adopted my son - it didn't seem important anymore what color my hair was.

Random fact 6: I still have the first article of clothing I ever bought myself with my own money without my mom. I took the bus downtown to J. L. Hudson's. I spent hours trying to decide what this first all important purchase was going to be. It was a dark blue dress with a flower print, shirt sleeves, round neck, empire waist, and hung to my ankles. I still love it. And wish I could still wear it.

Random fact 7: I have a fireplace in my house that has been lit only once. I like the look of it, but it just never occurs to me that I want it lit.

Random fact 8: When I eat a Hershey's kiss, I love to spread the foil out and flatten with my thumbnail so there are absolutely no creases in it.

Now to figure out who I will tag!!!!!!

So far..... Pipecleaner Dreams, Pitt Rehab, This is Not my Country , Can't Teach This, & Wheelie Catholic. I'm surprised by how many people have already been tagged.

Monday, July 16, 2007

I'm rich because of Rich

I have a wonderful son, but I also have another wonderful man in my life. His name is Rich and he is a most extraordinary man. He has loved me for about 8 years. He lives about 700 miles due east of Teddy and me, but he is a part of my life every second of every day.

Our relationship is not typical in many ways. We spend part of most days on the phone with each other, or IMing, or emailing each other. Rich travels a lot for work and when not on the road works. He works a lot. Too much as far as I am concerned. But he makes an amazing amount of time for me - including a few days with me here and there.

This works out well for us. It might not work forever, but right now it meets both of our needs exactly. I can prioritize my son's needs and he can prioritize work. Together I think his work would suffer and eventually my son would feel left out. when we are together we are inclined to forget about the rest of the universe.

I would tell you Rich is one of the smartest men I know, but then his head might swell. So let it suffice to say that Rich is a geek extraordinaire. I am a closet geek and he has helped me in countless ways to take a few steps outside my comfort zone. Rich is part of the reason I am writing this blog, because he keeps telling me I should. So Rich this is for you!

Sunday, July 15, 2007

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?

Friday, July 13, 2007

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.

Wednesday, July 11, 2007

Illegal assisted Oregon

You might think that legalizing assisted suicide in Oregon would end illegal assisted suicide - but it hasn't. Two nurses in Portland decided to help a woman to die 2 years ago, but it is only recently that the family was told. They thought she had died as a natural progression of her cancer.

These two nurses decided that they didn't need to follow the rules about having a period of notification before it was done, having counseling, and most importantly have a physician be involved (as it is physician assisted suicide, not nurse assisted suicide). They had access and knowledge how to do it- so they did.

Now perhaps you think people should have the right to assisted suicide, but there is also a question as to whether assisted suicide was even wanted. Yes, the person in question was in pain, and was receiving hospice care, but the children of Wendy Melcher don't believe this was anything requested by their father (Wendy is transgendered). They believe their father would have told them and he didn't.

So what happened to these nurses who essentially murdered Wendy Melcher? So far nothing as it was only reported to the state two weeks ago - even though the Nursing board has known about it all along.

How do we protect our most vulnerable citizens from people who are over zealous to do what they think is right and now live in a state that gives them easy access to the tools to do it?

Tuesday, July 10, 2007


Why am I starting yet another blog? Well I guess I have decided that this is a more popular place to blog than the other two places I have begun blogs at. And perhaps I will stick with it longer as I read so many blogs here. But why blog at all? I have trails of thought I want to write down. It is not enough to think and spin - I want to leave a mark.

So for those who are curious enough to read, I suppose you might be curious to know who I am . I think of myself as a disability activist. Most of what I do every single day of my life all day long relates to disability in some way or another. Some may think it is because I am disabled, but it is not. Some may think it is because my son is disabled, and while that may be closer to the truth, it also is not.

How I came to be a disability activist can be attributed to a set of books that my elementary school deemed so important that every classroom had a set. They had gray covers and were biographies of important people. I read and reread only a few of them: Helen Keller, Jane Addams, Dorothea Dix, and Susan B. Anthony. These women became my heroines and led me to read voraciously about women in history. So why not become a women's rights activist?

When I was 14, I decided to volunteer at the local institution for adults and children with disabilities. My guess is that Dorothea Dix led me there. She worked to create institutions that were separate for prisoners and people with disabilities and mental illness. She had seen unspeakable conditions that people lived in and thought that people should be treated humanely. People should be clothed, have beds to sleep in and not be chained. Early institutions for people with disabilities as awful as they were - were much better than the conditions people lived in when housed with prisoners.

But it was Helen Keller who led me to the Annie Sullivan ward. Ms. Sullivan was Helen Keller's teacher and this ward for children who were deaf and blind and otherwise disabled were named after her. The ward was painted bright colors, but was starkly bare, except for the oak cupboards that lined the walls.

The 60 or so children sat or laid on the cold linoleum floors or were stood in standing frames. It was important that each day the children were dressed and gotten out of bed. (Why? I guess this was why they were considered progressive.) 3 or 4 workers took care of the children. First they needed to be cleaned up and dressed. This was no small feat as many of they smeared their bodies with their shit over night. Some were put on toilets to sit and sit and sit. Sometimes they would be forgotten and would be found after breakfast or lunch smearing the walls.

Breakfast and all other meals were the same. Carts arrived with food in metal trays, pulverized beyond recognition. Sometimes something smelled remotely familiar, but most often nothing like food at all. All of the children had to be fed. It was a race to see how quickly the children could be fed. The only break the aides would get was when they finished up quickly. So they raced without talking to the children or even letting them properly swallow. As much food rolled down their faces as slid down their throats. Children who didn't want to eat didn't. Children who were too much trouble to feed would be fed only as much as patience allowed.

Meals were the only punctuations to the childrens' days. There were no toys to play with. There was no television roaring. There was no music to muffle the sounds of the perpetual cries and shrieks.

Children lay on the floor in their food stained clothing until lunch time. If there was time between the inevitable diaper changes and placement in standing frame or other seemingly forward thinking torture chambers a few might get their clothing changed.

Lunch was the same as breakfast and dinner more of the same. After dinner all the children needed to be washed and dressed for bed. It all had to be done before the night shift came on. I usually went home when the night shift aide came on - if they came. Only one person was there for the 60 children thru the night.

It was a horrid, smelly place and yet I went every Thursday until I went off to college. I don't really know why. I felt I made a difference. I did things with the children no one else did. Maybe the kids got 5 minutes of my singing them a song or reading them a book and their lives were a little better. My mother decades later told me she hated picking me up because I stunk so badly. She never told me and I didn't know.

I went off to college and explored ideas I never knew existed.