Friday, October 19, 2007

Another Terri Schiavo

My friend who I have written here now must be named. Sylvia Huttel. She has been in and out of a coma for 3 months. She has had moments - as late as last week where she has squeezed the hand of her former fiance and smiled when told about the antics of her 9 month old daughter.

Up until last week, Sylvia ex-fiance has been making all the medical decisions about her care. He has approved several brain surgeries, heart surgery, and leg reconstruction. He was told last week that the time had come to consider removing the machines that kept her alive. He has been struggling with what to do. No decision had been reached.

But this past weekend Sylvia's parents said that he would no longer be making any medical decisions. He would also no longer be able to visit her. They claimed he was a detriment to her. They washed their hands of their child many years ago - and suddenly now they have provided legal documents that they will be making all future medical decisions.

Today he was told to say goodbye as the machines are going to be turned off and her feeding tube removed.

I am now going from a sort of passive supporter of him doing what he thinks is best to deciding I must fight for the right of my friend Sylvia not to die of starvation and torture.

I don't know what I can do. But I am going to do my damnedest to prevent her from being tortured to death. Please contact me if you have any ideas for support. Please contact me if you are fluent in German and would help me research her rights under German law.

Saturday, October 13, 2007

Sign the letter to the APA - next post down

You can if you prefer, just post a post here, if you would like to sign onto the letter. Please include your name and your affiliation to the disability community, if any. I signed it!

Friday, October 12, 2007

A Call for Ethical and Unprejudiced Leadership and Practice in the Field

A Call for Ethical and Unprejudiced Leadership and Practice in the Field of Psychology

An Autism & Mental Health Community Letter
October 10, 2007

This letter is to the American Psychological Association (hereafter referred to as APA), and to all professionals in the field of psychology. This letter calls upon APA and professionals who adhere to the APA Code of Ethics to act in a manner that is ethical and consistent with that Code of Ethics. Two recent APA documents are relevant to this call to action. They are, the 2006 "Resolution Against Torture and Other Cruel, Inhuman, and Degrading Treatment or punishment" (hereafter referred to as 2006 Resolution), and the 2007 "Reaffirmation of the American Psychological Association Position Against Torture and Other Cruel, Inhuman, or Degrading Treatment or Punishment and Its Application to Individuals Defined in the United States Code as "Enemy Combatants"" (hereafter referred to as 2007 Resolution). With fervor, we are advocating for people with autism, developmental differences, and mental health challenges; urgently entreating that they may be given the same respect with regard to human rights as alleged "Enemy Combatants," or any other human beings. As professionals who adhere to the APA Code of Ethics, nothing less than an unprejudiced stance in this matter should be considered acceptable.

Currently, children and young adults with autism, developmental differences, and mental health challenges are being treated in a manner that clearly meets the definition of Torture and Other Cruel, Inhuman, and Degrading Treatment or Punishment, as defined by the two previously mentioned APA documents. The Judge Rotenberg Educational Center (hereafter referred to as JRC) in Massachusetts has a long history of using electric shock, food deprivation and prolonged mechanical restraint, as well as other painful and dehumanizing aversive techniques.

The use of the phrase "effective treatment," does not make such techniques humane or acceptable. Furthermore, attempting to justify them as "treatments" of "last resort" may not be completely accurate. It has been clearly demonstrated that positive behavioral approaches, based on a careful analysis of the functions dangerous or disruptive behaviors may be serving are as effective and more enduring than behavior change techniques based on pain and fear. JRC uses a device that they call the Graduated Electronic Decelerator (GED), to deliver painful electric shocks. Reporters, legislators and others who have experienced the 2-second shock from this device describe it as incredibly painful. A report from the New York State Educational Department noted that JRC was not only using electric shock for dangerous and self-injurious behaviors but also for behaviors that are benign or idiosyncratic such as "nagging, swearing and failure to maintain a neat appearance," or "slouching in a chair." The director of the Judge Rotenberg Center testified at a legislative hearing that one student received 5,300 electric shocks in one day. In his testimony, he stated that over a 24-hour period, this student, a teenager who weighed only 52 pounds, was subjected to an average of one shock every 16 seconds. During some periods, the student was automatically shocked every second if he lifted his hand off a paddle. A copy of the New York State Report can be found here: and a myriad of additional information on the school and its practices can be found by googling the Judge Rotenberg Center.

Proponents of behaviorism have voiced their opposition to these practices. Although the Director of the Judge Rotenberg Center often defends his practices by stating that he was trained by B. F. Skinner, Dr. Skinner made it very clear that he did not condone such practices. At the age of 83, he was interviewed by Daniel Goleman of the New York Times. In an article published August 25th, 1987, titled, "Embattled Giant Of Psychology Speaks His Mind," his view is stated.

“The use of punishment is another issue Dr. Skinner still feels impassioned about. He is an ardent opponent of the use of punishment, such as spanking, or using ''aversives'' -such as pinches and shocks - with autistic children. ''What's wrong with punishments is that they work immediately, but give no long-term results,'' Dr. Skinner said. ''The responses to punishment are either the urge to escape, to counterattack or a stubborn apathy. These are the bad effects you get in prisons or schools, or wherever punishments are used.'' The complete article can be viewed here:

The 1965 experimental research of O. Ivar Lovaas, Benson Schaeffer, and James Q. Simmons, conducted at the University of California, Los Angeles, concluded that electric shock applications did not have enduring effectiveness. In conclusion, they questioned the need for shocking children with Autism by stating, “A basic question, then, is whether it is necessary to employ shock in accomplishing such an end or whether less drastic methods might suffice.” (Journal Of Experimental Research in Personality 1, 99-109 (1965))

A recent Mother Jones article about this institution began like this, “Rob Santana awoke terrified. He'd had that dream again, the one where silver wires ran under his shirt and into his pants, connecting to electrodes attached to his limbs and torso. Adults armed with surveillance cameras and remote-control activators watched his every move. One press of a button, and there was no telling where the shock would hit—his arm or leg or, worse, his stomach. All Rob knew was that the pain would be intense.”(Mother Jones, August 20, 2007). A horror from the Abu Ghraib prison scandal? No, torture carried out in the name of treatment, right here in the State of Massachusetts, against the most vulnerable of our young people -- and designed and implemented by Psychologists.

It is additionally noted that programs that are built around scientific knowledge and principles will generally welcome peer review and a continual improvement process. Currently and historically, JRC practices are remarkably deficient in these areas. As leaders in the field of psychology, and as professionals who are intolerant of torture, APA has an opportunity, if not an obligation, to demonstrate leadership in this matter. Please consider the following facts and arguments.

Section 1 of the American Psychological Association Code of Ethics, creates a standard of excellence in regards to the personal accountability of psychologists to their Code of Ethics. It also establishes a means for resolving professional ethical issues between psychologists and with organizations with which Psychologists may be affiliated.

Sub-Section 1.05 of the Code of Ethics covers the topic of Reporting Ethical Violations. This sub-section related to reporting, places a grave responsibility upon APA members to report apparent ethical violations that have "substantially harmed or are likely to substantially harm a person or organization." This reporting "may include referral to state or national committees on professional ethics, to state licensing boards, or to the appropriate institutional authorities."

Within the 2007 Reaffirmation, reference is made to the 2006 Resolution, stating emphatically that it is "a comprehensive and foundational position applicable to all individuals, in all settings and in all contexts without exception." We are in agreement with this position.

We are pleading with APA psychologists, and all psychologists who independently and voluntarily follow the APA Code of Ethics, to consider that the 2006 Resolution is inclusive of all human beings. We ask that it be applied toward those who are receiving treatment/services related to symptoms associated with autism, developmental differences, and mental health challenges, including such that may cause or contribute to self-injurious behavior. This letter is an earnest appeal to APA leadership and all professionals in the field of psychology to demonstrate ethical practices and adhere to the principles of the 2006 Resolution and the 2007 Reaffirmation in opposing the use of skin-shock and food deprivation that are currently being administered as "treatment" for self-injurious behavior, aggressive behavior, and other behaviors that are being considered as precursors. Skin-shock or food deprivation under any other context, or being administered to any other population segment would be considered an inhumane form of punishment that in reality is truly torture. According to the 2006 Resolution, there can be no exception for this type of degrading treatment.

Although there are some within this mental health population segment who are able to communicate how they have been "substantially harmed by a person or organization," there are many others who are unable to do so. Even those young people with the ability to communicate how they are being harmed are virtually unheard. Regardless of the individual’s ability to communicate and describe torture and its physical, mental and emotional effect upon them, this type of "treatment," is still inherently wrong. Is it not the responsibility of a professional or any human being to take action when they personally are aware of acts that are inhumane and degrading forms of torture?

At the JRC this "treatment" is being authorized under court order. While Judges may have extensive expertise within the framework of law, they are reliant upon the testimony of experts (in these cases, Psychologists) to assist them in making decisions. Experts within the field of psychology need to see an example of leadership from organizations such as APA. Good leadership provides guidance and constraints in all areas that are conducive to professionalism and best practices.

In conclusion, we are respectfully appealing to APA members and leadership on the basis of professionalism and unprejudiced application of your own code of ethics, and consistent with your 2006 Resolution and 2007 Reaffirmation, to formally and specifically declare your position regarding the use of skin-shock "treatments," food deprivation, and any other aversives that inflict pain or deprive basic human rights at JRC or elsewhere. We are calling upon APA members to apply the Code which condemns the treatment that is currently taking place at JRC.

We respectfully request that the APA send this letter to its members, post it on their website and/or publish it in a newsletter or other publication that reaches its full membership. We request that the APA as a professional organization, and as professional individuals actively and vociferously advocate for best practices while opposing that which is torture. We furthermore request that the APA, as an organization, make a formal and specific declaration of its stance in this matter and exercise appropriate discipline, thereby demonstrating that the Code of Ethics will be applied without prejudice. Your example in this will be a voice of hope for those who have been locked away, subjected to daily torture and unseen and unheard for too long.

Written and Presented by:

Derrick Jeffries

Person with Asperger’s Syndrome

Nancy Weiss

Co-Director, The National Leadership Consortium on Developmental Disabilities, Center for

Disabilities Studies, University of Delaware

The following individuals and organizations endorse this message:

To be added to this list, please submit your name and/or the name of your organization to . Individual submittals should include an identifying title, such as parent, person with autism, Ph.D., concerned citizen, etc. For organizations, information must be submitted by an officer of the organization. Posting this letter on websites is encouraged; however, we do ask that you send us an e-mail address where updated copies can be received. It is our intent to update this section of the letter on a monthly basis for a reasonable length of time. Updated copies will also be sent to the APA.

For those interested in contacting APA directly, please consider sending mail or e-mail to:

Lynn F. Bufka, Ph.D.
Assistant Executive Director, Practice Research and Policy
American Psychological Association
750 First St., NE
Washington, DC 20002


Sunday, October 07, 2007


I am so scared and worried today. My friend in Germany is back in her coma and the doctors aren't very positive about the outcome now. And her boyfriend, who I have become very close to is giving up - not on her - but himself. He has dropped out of school. He is talking to counselors about giving up his daughter for adoption. And he talking about fixing all his problems for good. He hasn't said the word suicide yet, but I hear it none-the-less.

He isn't disabled, but his baby's mother is. He is so desperately in need of help. He is 22 and alone in making life and death decisions about his girlfriend. He isn't handling it well. Right now the only things that keeps his girlfriend alive are his decisions to keep providing the machines that keep her alive, and the medication and his holding her hand that keeps her lucid when she awakes. Without him, she will die. Because of her, he may choose to die. A little girl may lose both her parents because we don't offer enough support to people who are in desperate need of support.

I feel so helpless. There is nothing I can do but wait for the next email and hope I have something helpful to say.

Thursday, October 04, 2007


My friend is out of the coma ever so slightly. She has come out of it and gone back in. She has refused medication she was getting while in her coma and then become paranoid and hysterical. When they calmed her down she went back into the coma. They have turned off all the machines that have been keeping her alive. I never thought I would be for doing this, but I am. The doctors said it was time to find out whether she wanted to fight to live or not. It's not clear yet what is going to happen. She seems to be living in limbo. Sometimes I wish one thing would happen and others times I wish the other. I wish she could be who she was before, but since I don't think she will, maybe it is best if....oh I can't even write the words.

In the meantime her daughter has spoken her first word. I am so excited. Her first word was prego - which is please in Italian. Her dad is Italian. I think it is such a wonderful first word. My first word was cookie. Prego is such a polite word - a sign of good breeding - a sign that she has a father who truly respects her as a person. Please let her have the wonderful life she deserves!

Sunday, September 30, 2007

New family members

In our house live Teddy and me. Teddy lives downstairs in his own apartment. Opal and Jack also live with us. They are 2 rabbits. They were supposed to live with Teddy, but I wasn't sure they were being kept clean- so they live upstairs with me.

Opal and Jack are supposed to be siblings. We got them from a rabbit rescue. Don't trust a rabbit rescue to know what they are talking about. Our twins were the same size when we brought them home. But Jack started to grow and grow and is now about 3 times the size as Opal. It turns out they are the same breed - just one is full-size and the other is dwarf.

Well now we have two more family members: 2 ringneck doves. I'm not sure their names might not change - but they are Irma and Flora at the moment. Named after my grandma and her sister. My son adored them both and think that the doves are from heaven.

So the doves are exploring the house and we are trying to figure out where in the house they will live- what they eat - etc. We are also wondering what the rabbits think of them and if they might turn out to be friends.

Update: they have been with us for less than 18 hours and we have eggs. I can only assume the eggs were made before they came to live with us and these are truly 2 girls.....but just like rabbit rescues can be wrong - so can dove owners.

Update: They are ignoring the egg. There is only 1 now.
Opal, our rabbit has died. Old age maybe. Shock from seeing the birds? Teddy is heartbroken. Jack seems sad. We introduced Irma to Jack. They didn't seem to mind each other. But Jack couldn't get in his cage fast enough when the introductions were complete.

Friday, September 28, 2007

Bad Mom

I know we all have our days and today I had mine. Teddy was going to a football game and was supposed to bring 2 bottles of Mt. Dew and 2 of Pepsi as his contribution.

I had been to the grocery store the night before on my own - and the big bottles were up high in a new contraption that I couldn't reach. So I just figured we would get them today. So we went to Kmart because Mt. Dew was on sale - but we went to a Kmart that had just one scooter and it was in use - so we kept going. I sent him into the Kroger's on his own with strict instructions as to what he was to buy.

So he came out with 2 Vernor's , 3 Pepsi, and 2 Mt. Dew. So I screamed and hollered about buying 4 not 7 and what was he doing. Couldn't he count to 4? Well he said he bought the 2 Vernor's for me because he knew I didn't feel well. Well I said I didn't ask you to buy that I said 4. Why did you buy the extra Pepsi. He said I wanted one.

Well I talk all this talk about a self-determined life for him - and he was very much thinking his own mind when he bought all this pop. SO why did I lose it?

Teddy knows.

One day a month the mother from hell appears. So, he just listened and ignored me. A few hours later I apologized and said I didn't feel good, but it was no excuse. He said it was OK and did I want some Vernor's? I said yes please - and after 15 minutes he appeared with warm chocolate chip cookies (thank goodness for premade cookies dough) and a big glass of cold Vernor's.

My sweet angel.

Sunday, September 16, 2007

Hanging on

My friend is still in a coma. Her fiance is struggling with what to do about her life. It is hard to be a support person to help a person make their own decision when you have very very definite ideas about the choice you think they should make. Or at least you did for awhile.

She has two doctors - one which says pull the plug, she will never recover and the other who says it is too early to tell, she is still improving. He says in one minute he is so tired of waiting and not knowing and having her not react to him at all - and then he says he will hold her hand forever waiting for her to wake-up.

His life is on hold while he waits for her to wake up. I want to help him move on with his life without feeling as if he is abandoning her. He worries if he is not there everyday by her bedside it will be his fault if she dies. But he is 22 and college is important. He needs to make money to support himself and his daughter. He can't be there everyday and give their 8 month old the attention she needs.

So does a point come where because her quality of life has to be set aside because two other people - the only other two people who truly care if she lives or dies - can't spend much time with her- so she shouldn't live anymore? We don't know what, if any, awareness she has - perhaps it doesn't matter to her that no one visits her for several days. Perhaps she is healing and has no sense of time. Is her life any less valuable because she spends days of it alone?

But I also wonder if the reason she doesn't wake up from her coma is that she doesn't want to. She, after all, attempted suicide. Could living be torture for her? She can't get the therapy she needs now to want to live. If she could - would she say pull the plug? We all have the right to refuse treatment, but she can't refuse it. Is it wrong to give life sustaining treatment to a person who has attempted suicide and failed?

I don't know anymore. I was sure before that she should be given as much time as she needed to recover. Months, years, whatever it took. But now I wonder. Is she hanging on or is she being tortured by being forced to live?

We can only guess.

Note: Everytime I post about these friends - something new happens. Well about the time I was writing this she woke up again. Still not communicating, but her eyes are open and she is tracking things.

End of day - she is moving a little, talking a little - things are looking good.

Saturday, September 15, 2007

Where will he be?

Where will my son be when I am gone. I've thought about that for 24 years and hopefully will think about it for 24 more. I have tried to put everything in place so that he can live a life as independently as possible. But he will still need support - a lot of support. Who will give it? Will he end up in a horror of an institution like where I worked when I was young? Will he lose all his freedom and be forced to live in a group home that does not respect his individuality? Will he have as I have planned a caring person in his life who will live in what is now my part of the house and be my replacement? But can I be replaced? Can any parent be replaced?

It would certainly be much easier to replace a person with the skills necessary to do the things I do if the Community Choices Act was passed. The passage of this act is absolutely essential to the youth of today as they will in the future be those who need support and have lived a fully included life and don't want that to end - ever. But the way we fund health care now - that can certainly not be guaranteed. It doesn't matter that if in my son's case and in most, but not all others, it would be far more financially efficient to provide the services he needs to live at home.

I need to feel that his future is secure. That he will have the life he wants. The life he deserves.

Friday, September 14, 2007

Does a worthy punishment exist?

Workers at a trucking company in East Butler discovered a body inside a burned out dumpster Friday evening. Police say the condition of the body is such that they can't even tell if it is a man or a woman. Police are asking anyone with information about a missing person in the area to call them at 724-284-8100.

Ritzert was forced to wear the lighter fluid-soaked T-shirt and was set on fire as he lay in a bathtub, police said. After Ritzert lost consciousness, Caldwell kicked him and put his foot on Ritzert's chest and neck for five to 10 minutes. The defendants (Tim Caldwell and Melissa Adams) then took Ritzert's body to a trash bin, where they set it on fire, police said.


Who does things like this? Where is the outcry when they do?

I read about this some time ago - 3 people began to live in the apartment paid for by social services with Ritzert about a year before the murder and refused to leave. Jason Michael Ritzert was a part of what we desperately want with the Community Care Choices Act. We want the right to live in the community. But we want that right with the support services we need we live our lives in freedom and safety.

Things equally horrible happen in institutions. They happen under the watchful eye of the same people who ignored Jason.
Summary of Rosewood Center Deficiencies Cited in OHCQ Survey
Released September 12, 2007 (a few excerpts)

Rosewood is not ensuring that complaints and allegations of abuse, neglect, mistreatment and injuries of unknown origin are promptly detected and reported and had documentation of thorough investigation for only 50 of 183 reported incidents reviewed by OHCQ.

• When an individual experienced numerous broken ribs on several occasions, Rosewood did not inform his guardian. An x-ray showed two fractured ribs after a Heimlich maneuver was performed while the individual was choking. Three weeks later, another x-ray revealed 9 possible fractured ribs that may have been of different ages. The resident again choked on food
about 6 weeks later, and again experienced four broken ribs. The family and guardian were not informed about any of these injuries.

• Staff who was supposed to provide 1:1 support for an individual with frequent seizures was found sleeping, too far away from the individual to be of assistance.

• Water drips out of equipment and onto food, including vegetables. Mold was found growing in the moist conditions, and water leaking onto floors poses a slip and fall risk.


So absolutely we need the Community Choices Act, but we also need the COMMUNITY TO CARE. How do we get the community at large to feel a responsibility that our most vulnerable citizens are not exposed to the horrors other people inflict upon them by their neglect or abuse? How do we recover the time when I was a child when everyone in the neighborhood knew everyone's business and everyone looked out after each other?

When I was 4 my mom became a widow. I remember feeling as if I had a whole load of people looking after me. We took in Sandra who was a foster child of 16 to help with the babysitting of me and my brother. I have good memories of that time because I was so surrounded with love.

My son is gregarious and well-liked. I imagine that if something happened to me - he too would be surrounded with love. But I worry. I have worried for all of his 24 years what will happen to him without me to protect him? I know all too well what places like Rosewood are like. And sadly I have become all too conscious of the hate crimes committed against people with disabilities in our communities when people live alone and in isolation.

How do we as people with disabilities stop being perceived as outsiders - as aliens - as people unworthy of life? How do we become an integral fabric of our communities?

How do we ferret out the people who are willing to abuse us? When 2 people burn a man to death they get punished, but what of all the people responsible for the atrocities at Rosewood - what punishment do they get? Does our society send a message that it is OK to treat us this way when we continue to refuse to close the institutions that continue to abuse us?

We need to live in our communities where people learn to be with us and us with them. We need to be a community of interdependent people who learn from each other the value of living. The Community Choices Act offers us that opportunity.

You're inconvenienced for a day - We're Inconvenienced for a lifetime

I was in Chicago all week with ADAPT. Unlike most of the protesters I stood my ground on the street corners just beyond where the police held vigil keeping the public away. So I handed out leaflets and talked to the people who had questions. Most people took a flyer. I don't know that they all read it, but many did right, then, and there.

Some would stop and ask me questions on their way back in the opposite direction an hour later. Some would read a bit that then come back to ask questions. Nearly everyone I talked to - whether they originally agreed with what we were doing or not agreed by the time they walked away.

What made the angriest stop and think was when I said that yes, I sympathized with the fact that they were inconvenienced - that they were forced to go where they did not want to go - but tomorrow they could go where they wanted to go, but how many people with disabilities had a lifetime of not being allowed to go where they wanted to go.

I was surprised by how many people had stories to tell me. Stories about a grandparent forced to go to a nursing home because they could not get any funds for care at home, about a sister who wanted nothing more than to die in her own bed but ended up dying 2 days after being placed in a nursing home, a parent who cried when they told me about the institution her child had lived in and how horrible it was but at the time she felt she had no other choice, the direct care worker who wanted to work in the community because she hated the institution but she couldn't live on the wages she would get working in a home, and the older man who told me about the days he worked in an institution and remembers it as filthy and not fit for humans.

The people do get it. Why don't the people who make policy get it?

No one who doesn't want to live their life in a nursing home should. Everyone in this country should have access to affordable, accessible, integrated housing. It's that simple.

Want to read more about it?

Friday, September 07, 2007

Jerry Lewis

I've read so much about Jerry Lewis, but what I haven't read is what pissed me off the most. JL called out "illiterate fag" and all of the hullabaloo has been about the word fag. What about the word illiterate? Not that illiterate is a bad word, but it was used as a word to demean.

People who are illiterate are often people who are disabled, and often cognitively disabled. So is what he said that much different than calling out retarded fag?

Why do so many people continue to give a man with such little respect for people with disabilities so many accolades? He apologized for saying fag, but I heard no apology for the rest of the spew of hatred.

And no one demanded he do either.

Thursday, September 06, 2007

Love Penalty

Gay marriage isn't legal. Same sex couples want the right to the benefits of a contractual marriage. They want to be able to adopt children together, to make medical decisions for each other, and to pay less in taxes.

On the other hand marriage between two people with disabilities can cause financial hardship. Benefits two people receive can be adequate to live on, but if they marry it can be too little. Some types of disability housing is restricted to people who are single. Some people because of having guardians are not allowed to marry.

In both situations we make people's lives difficult because they have fallen in love. We don't allow gay people to marry and we make disabled people suffer if they do.

If we provide a penalty to people who have long term relationships - are we discouraging people from becoming strong and more unified?

Why is the government involved in our private lives? Why are there benefits to abled-bodied heterosexual couples who marry and none to homosexual couples who desire to and penalties to disabled people who choose to. This is unfairness at its core.

Tuesday, August 14, 2007

Mattel Toy Recall

How many recalls must there be before Mattel says they have to raise the prices of their toys because they are going to have ALL their toys manufactured in the US where these laws are more seriously enforced.

Clearly China does not care about who dies as a result of their lack of quality control.

We insist on low prices. This is what we get.

It is next to impossible to refuse to buy anything from China. At Walmart virtually everything comes from China (so they say.)

We must be willing to pay more and have less things in our life.

I know this presents the greatest hardship to people on disabilities who live on a measley fixed income as it is. So we also have to insist on spending more of our taxes on programs such as SSI and SSDI.

We in the US have the right to believe that the goods we buy in our stores are safe. Where is the quality control?

I cannot boycott all goods made in China, but I sure am going to try to boycott them to the best of my ability.

Saturday, August 11, 2007

More sunshine

Today my friend said her first words since going into her coma 3 weeks ago. She said the name of her fiance. She doesn't remember she has a baby daughter. She doesn't remember the days of the week, and she can't feel her legs. And she has no idea what happened to her to get her in the hospital. But she is responsive. She feels pain. And she is getting better, albeit slowly.

Depression is a scary thing and should not be ignored. If a person says there life is too hard and they are doing things like not eating and cutting themselves and getting so drunk they don't remember what they did - those are warning signs to pay attention to. Don't be like my friend who decided one day that driving her car into a tree was easier than the life she was living. It isn't now and I doubt it ever will be. She has a very long road to whatever recovery she accomplishes.

Tuesday, August 07, 2007

Today was good.....

Silly day. Did mostly nothing. But did it without a schedule. Without consideration for anyone else. Did not feel once I should be a good example. Felt no guilt for talking on the phone to my friend for several hours. And now I am going to read - perhaps read all night - and tomorrow sleep all morning. A life alone. It feels good.... for a few days.

Monday, August 06, 2007

Lonely until

Yesterday my son went to camp. This morning my lover left for home. Today I am lonely. SO I will blog.

I won't miss Teddy tomorrow or the day after - as I will have settled into my solitary life. But today the house seems so quiet. No TV set on. No questions about what we are going to have for dinner or do tomorrow. No unnecessary lights on. No announcements of where he is going or that he is back. No one to feed the rabbits. No one to remind me to eat. Just me.

I don't get the chance to be lonely often. I sometimes think of Teddy and me being attached at the hip. I support him in the work he does. He supports me in the work I do. We enjoy doing the same things. I have to know where he is at all times. I never get to stop being responsible - no matter how independent he becomes.

I do get breaks from him. 4-5 hours in the summer when he goes to the pool or during the school year when he goes ot school. But the only time we are away from each other for more than a few hours is when he goes to camp for a week in August and December.

Rich is here when he leaves - so the first day Teddy is gone is rather blissful. A day where Rich and I can be alone with each other. We make love for hours on end without any concerns. We go to a wonderful romantic restaurant and I don't have to feel a bit of guilt for leaving Teddy home alone with his pizza. I feel more free than almost any other day of the year.

But than as is typical, Rich leaves and the silence without Teddy gets so loud. Today I miss Teddy. Today I feel a loss. Today I worry if he is having a good time and if he is fitting in. Today all my fears about a young man with Down syndrome going to a camp for teenagers without disabilities being OK are on alert. Today I worry. Today I miss the men I love. Today I blog.

Tomorrow I read uninterrupted. Tomorrow I play music all day. Tomorrow I cook with ingredients Teddy doesn't like. Tomorrow is mine and mine alone. Tomorrow will be wonderful!

To my friend Peaches!

H A P P Y ---- B I R T H D A Y !

A bit of sunshine...

A person I met thru my message board has had a very very hard time of things lately. His girlfriend inspired my post about the whether people with psychiatric labels like Borderline Personality disorder should parent. Since that post things with her got much worse.

This young woman drove her car into a tree. She has been in a coma now for over 2 weeks. She broke many bones - some so badly they were removed. There is no way of knowing if she will recover and if she does what she will be like.

But this post is not about her, it is about her 7 month old daughter and her daughter's Dad. I have become very close to him. Worrying with him. Fearing the worst, wondering what the best could be. I have tried to help him help his daughter - who of course has no way of understanding why her life has been turned upside down. I have tried to support him wherever it is he needs to be as it fluctuates from moment to moment. He says he thinks of me like a mother - and I think of him like a son.

So when social services picked up their baby last week because he had no proof he was the father I cried. It was as if they snatched my son out of my arms. I remember all too well when my son was my foster child the tenuous hold I felt I had on him. I lived in fear that one day the foster care agency would say they had decided he needed a 2 parent home. I wanted what was best for him - but I felt in my heart I was what was best.

Today I also cried. Today she was returned to her father. They apologized and said they made a mistake. The midwife contacted them and evidently said the magic words. I feel as if my granddaughter is back home where she belongs. Sometimes there is a bit of sunshine where before there seemed to be none.

To Silly Man

I know you read this blog. So you can come here and read this over and over because I never tell you often enough how much I love you. I never say often enough how much I appreciate how much you care about my son and his future. I never say often enough how patient you are with him and what a tremendously good influence you are on his life. I can't know how you put up with me when I have my fits of despair, but you do. You hang in there with me and are still there when I emerge with regained composure. You love my body which I do not love myself. You make me feel like no one else in the world can. I cannot imagine my life without you. Everyday is better because of you. Weekends with you here are like my own little piece of utopia. My life changed the day you reentered it and waited patiently for me to notice you there. I can never ever communicate in words how incredibly significant it is to me that you love me.

Friday, August 03, 2007

Blogs vs Message Boards

In love. Is being in love when you feel pissed, but instead of being pissed you blog? Has blogging become my own personal therapy tool? Could we become a kinder, gentler world if we blogged instead of wrote messages on message boards?

I read numerous message boards. Several seem to thrive on adversarial communication between its members. It almost seems as if without controversy they have no reason to exist. I was going to say message boards are topic driven but blogs are not- but that isn't true. Perhaps the difference is that message boards are intended to be democracies where there is never any intention of a blog being one. The reason people often post to a message board is not to agree with a poster, but to disagree.

A blog is a "one man show". One person writes it and the community it creates may not be required to agree, but it seems to me that bloggers are much more about find the commonilities between its community than in finding it differences. There seems to be an attempt to educate people to come around to your way of thinking rather than bash them over the head with your perspective.

But maybe I've just had a run of bad luck with message boards and find blogs than are more compatible to my way of interacting with the world.

Disability Carnivals

If you like reading blogs and need more inspiration than what a blog roll provides - try reading a disability carnival. A carnival is similar to what you find in the forward of a book or an introduction to a journal - it gives you a tease - so you want to read more. A blog carnival gives you a little snippet of a blog related to a theme. The theme is decided upon by the blogger and they cull the net looking for blogs to cite.

Zephyr aka Arthritic Young Thing assembled a bunch related to the topic of sexuality and disability. She cited the disabled soapbox - even though the topic she made note of didn't relate to sex. (I haven't blogged much about sex -that is going to have to change soon.)

SO read you first carnival! Here's the link!

Thursday, August 02, 2007

Which disability is worse?

That is one of those nonsensical questions that seems to get asked a lot. Well last night I didn't decide which was worse, but I sure got a dose of what my (unacquired) tolerance is for certain behaviors. My son had a birthday party last night and had 5 friends over. 2 had Down syndrome like he does. 3 had other unknown to me disabilities. But the disability itself really doesn't matter, it is some of that behaviors that drove me nuts.

Eating with your mouth full and talking. I never really understood why this was such a problem. Now I know. Or maybe my level of tolerance has lessened. I watched the two young men sitting across me at the table as the food bits spewed out of their mouth in various directions. Not a lot- just a few tiny bits. But it drove me crazy. I wanted to tell them to close their mouth when they chewed and stop talking. I also felt like I wanted to run over to the other side of the table with the vaccuum.

I sat next to a young man on the couch who decided to go through a pile of items neatly stacked on the lower level of the coffee table. He also opened up cabinets in the kitchen and looked at them. And open up the refrigerator. He also went to the bathroom and I found myself wondering if he opened up the cabinets. This all made me feel uneasy. I was sure it was just curiosity and harmless, but I felt protective of the privacy I am accustomed to.

Another young man had one conversation he wanted to engage in all night. It would get interrupted and he would engage in other conversations, but as soon as there was a lag it was back to that same conversation topic. I wanted to say - enough already - but of course I didn't.

Another young man paced the floor back and forth, back and forth. I commented that he sure did like to walk. He said I like to walk OK, am I hurting anyone? I said no, of course not. But it exhausted me to watch him pace back and forth. I wondered did I need to do something to stop his desire to pace?

And another young man reminded me of my mom. He talks very quietly. My mom is sure she doesn't talk any different than before, but I am sure that her hearing aids have her thinking she is talking louder than she is. This young man didn't wear hearing aids, but I knew it was futile to ask him to speak up and I had to guess what he said from the one syllable I could hear in most words. I know I really have to give in and get hearing aids.

And lastly the young woman who perceived herself to be my son's date. She is that hypersexual person with a disability who misses the cues to slow down, back off, and take it easy. It is sort of amazing to watch my son be the object of affection of another - and I wanted to say - go downstairs and do it in private. But she really is just a tease. And my son really was in the party with everyone mood.

I found myself wondering - am I getting old that these really insignificant behaviors drove me to distraction? Am I so accustomed to my son's quirky behaviors that I've lost the ability to accept other quirky behaviors as well? I wonder what other parents say about Teddy that they wouldn't say to my face?

Maybe the things that drive me crazy about Teddy drive them crazy too? Or maybe they see those as endearing and behaviors I don't even think twice about are the ones that they find annoying?

Teddy is constantly asking about what happens next. Sometimes I want to scream (and do), forget about what happens next, enjoy now. But I know this is a monster I created. Early on I would tell Teddy what was going to happen for the day. Warn him about transitions. 5 minute reminders before we change gears. 1 minute reminders. Patience when he is still not ready. Most of the time I give him a running itinerary of the day, the next few days, the week without even thinking about it. But some days it seems like such a chore to answer - what are we going to do tomorrow?

The other thing he does that really makes me crazy is that he asks people questions he knows the answers to. Or questions he asked 10 minutes ago. I find myself saying, if you ask me a question, listen to the answer so you don't have to ask me again. Is this such a big deal? Does it really matter it takes 2 seconds to repeat myself? But sometimes I prefer to rant for 3 minutes about my having to repeat myself.

I 'm not sure this is a disability thing after all. We all have quirks. But then I am sure one of the quirks people think I have is that I interrupt and sometimes answer questions in what seems to be nonsensical ways- and it IS a function of my disability. I can't hear very well. Actually I am deaf. Not deaf in the way that people think where you can't hear sound at all - but in the way that I just can't make sense of what I hear too well. SO the other quirk is that I have to ask people to repeat a lot. I am sure I drive many crazy. And I wonder how many people say to themselves - when is she going to get those damn hearing aids!

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.