Why are we still fighting a rear guard action against the right wing fantics lead by Geroge Bush and Karl Rove.The Chamber of Horrors (Commerce) has trashed the A.D.A. from day one and has lead a very successful campaign to frusturate enforcement.
ADAPT for all its good intentions is no closer than it ever was to providing adequate community living avenues to those people needing them. The same old dismal statics stare us back in the face after fifty years in terms of people working and those falling through the cracks onto SSDI or SSI.
We need to reacess where we are and where we are going. It is time to confront the people who are not disabled and earning a living off our misery. They are Welfare providers and they maintain us in poverty and despair.
Gary Roberts

Our movement is getting crushed!!worse than when
x- President Reagen was in office.We need more protests,louder voices,more efficient communications with each other and at the very least more letters to our radically right Congressman. The fact is:those politicians are up for re-election so let's make our demands clear,concise and extremely numerous!!!

Re: Dangerous Times by Steve Drake

I also don’t like, or get, Boxing or WWF wrestling for that matter.

I hated the dog story. Hated it. It made her character seem like an insensitive halfwit.

Regarding Frankie’s night entrance into the facility, having lived through a similar experience - scary as it seems - it is very possible and done I guess more often than we know. I opened my eyes in an ICU unit that was only supposed to let in my immediate family to find a bystander who had been at the accident scene standing beside my bed. If they had meant to do me harm they would most assuredly would have gotten away with it. People and staff come and go all of the time in these units so unless patients are in a wing that is locked down there would not be any alarms. Night staff is usually minimal at best and if they are distracted, or otherwise occupied with another patient it might take several minutes to respond to equipment alarms. Since she was confined there would be no reason to put her in a secured area.

I also questioned the care that she was given that would allow such horrible breakdown of her skin but I couldn’t tell what time frame we were talking about. The ulcers can develop when blood supply to the skin is cut off for more than two to three hours and if there is no circulation to the affected area the skin would breakdown rapidly, so I guess that could sort-of happen.

I don’t understand her expressed reason for wanting to die, but I also don’t understand why some people who have lost a limb want to die either because they feel that they are less of a person. Like who they are as a person was defined by their foot, etc. If she had said that she was in constant agonizing pain or something I may have bought into it. But she said it didn’t hurt didn’t she? I agree with you that what he did to her was a horrific way to go. Unless there was a legal fight with the family she could have requested that the equipment be turned off like you said. Like you, I do believe there is a great intention to numb people in this country to the idea of death on demand for any reason.

I didn’t know that Clint hated disabled people so much. Maybe he will reconsider his view in a couple years when his young wife has to wheel him around in and out of places and change his diapers and bedpans.

There are a lot of folks out there that are like Danger... and there are a lot of folks like the members of her family. I have met them both. Most of the people that are like her family worship at the alter of Jerry Springer.

You must have missed the part that explained the reason Frankie was at church so much was seeking forgiveness for something that had to do with his daughter, and unless I missed it, that was never explained. What was his daughters big problem with him?

Having said all this I still think that it was a very interesting and thought provoking movie in an "only-in-the-movies" sort of way.

PS: I thought the movie Lost In Translation stunk so bad that it actually had an odor that I could smell.

After reading this article it made me feel al ittle better. In the sense that we are not alone. My husband Mike, born in USA, has been a hard working man all his life, never asks for anything and a true helper for others. But Mike has a pacemaker for over 9 years now, and within the last week found out he needs open heart surgery at 47! Problem is that he can't get insurance.

Why do Americans allow the insurance companies to run health care, and whatever happened to the medical oaths? We have become a society of materialistic values. We have to have a voice somewhere. I've been an RN for years and believe it or not when I was taking care of my patients their insurance or how much money they made didn't concern me. We better start taking care of our own, before we spend so much on terriorist countries, war etc.

I hate this format. It used to be that you could just click on comment and it would bring up an e-mail. This makes you go through hoops to get here, by which time, one has forgotten the title of the article.

Anyway, I want to comment on the article about the person who had a problem with flourescent lighting. I have heard of people with epilepsy having problems with flickering TVs and blinking lights but I've never come across anyone mentioning flourescent lighting. Certainly, whatever the problem was, an accommodation should have been made but I think it would have been helpful to know what the problem was? I was baffled and I am a medical editor!

Also, why call anybody a geek? Isn't the whole idea of Ragged Edge to get away from miserable stereotyping? Methinks that being intelligent is kind of a disability too because people are always saying such negative things about us. Hey, we didn't choose our IQs any better than a person suffering from mental retardation or schizophrenia. And the last I check, there wasn't anything pathological about a high IQ either, so why does everybody feel so compelled to insult us?

A good article--but needs more information about the problem. I'd like to be sensitized to it.

Readers can ALWAYS send a letter the old fashioned email way -- just send to contact145@advocadopress.org

As for fluorescent lighting -- many people with aautism have a lot of trouble with fluorescents. Do you recall the name of the article you read? Was it A Hard Look at Invisible Disability? Or perhaps The Way Things Are?

I have never seen the movie United States of Leland (The Sub-Human Life, Ragged Edge Library), but I was very interested in the commentary about it. I was so shocked (although shouldn't really) about how that director uses the autistic boy as a sensless way to get the audiance to sympathize with a killer...A KILLER!!!

I remember once when there were poeple in my high school picking on someone who was mentally handicapped. I was outraged. I chased the guys away. I was so upset for the rest of the day.

I think it would be nice if poeple could get to know each other better and to meet each other half way, instead of the person with any kind of disability having to always meet the standards of 'normal' poeple.

Thats all for now....(yes, I realize this article was written over a year ago...o well.)

http://www.southbendtribune.com/stories/2005/10/04/local.20051004-sbt-LOCL-B1-A_rough_road_every.sto

This lady is in a worse position than what I am in.
One of the churches helped me with fundraising to repair my van.

I hope that I can help by spreading the word and getting her family some assistance.

3 kids with muscular dystrophy and she needs a hand up.

Please check out the story & if you can help
- it would be appreciated.

If you are going to yell at someone - yell at me not her. I am only trying to help...

Kat...

Hi,

Service Dog Rights!

The articles I read about referring to SA are shocking. Many times some of the problems are brought on by the person with the dog who is not educated about the three things they only need to volunteer when stopped with the SA. Others are brought by the businesses personnal ignorance of the law.

In an emergency Service Aniaml owners should have documentation ready in advance and know when where and what to do in that moment of emergency. Its too late after the fact. Denial is usally the problem for not being ready.

Yet, another is the battle with some people refusing to use an ID for a Service Dog and dress them with a SA vest or cape with the exception of dogs with harnesses.

Through my own experiences in the last 12 years, I have found the the dress wear and a photo ID usually settles 90 per cent of access problems. Also a specific colored leash with type of service animal task is embroidered on it along with a specific colored collar.We also know you are always going to have some smart butt who knows it all to approach a person with a service animal and challenge their accessability.

First I educate the person on the first visit. On the second if stopped I educate and show ADA and state law. If I come back the third time and still have problems, I call police and follow through with suit if necessary.

However, as a warning, not all police officials know the ADA for service animals so be prepared to educate them too.

My point is, until you establish a form acceptable to most service animal owners to show in public then continued problems exist and more add to it. Not everyone will agree but all it takes is the majority to accept or deny it.

If there were certain rules or even a ID which is to be used to satisfy the business , then things may become easier without all the delays for accessability. Yes there will be the frauds too!

There are people out there refusing to accept a form of ID and many are Trainers who are not LICENSED Dog Trainers. They do not want to meet standards set by law but only make money. If they operate a business, they should be required to meet certain standards just like any other business. Otherwise anyone can say they are a trainer and hand you a bill for x amount of dollars leaving you with nothing for an certified trained SA.

Then there are those who feel its illigal to have to show ID or dress the service animal in a vest or cape in public.

There are a few things that need to be addressed as to where do you get these IDs and the guidelines to receive a certified ID. The guidelines of course would be different for the different types of service dogs. People who are licensed to train the dogs and government officials should agree on the accepted guidelines made into law.

Licensed organizations for training the service animals usually provide ID cards and this should be accepted that the dog is cerified to serve as a service animal. They would have to abide by the given guidelines too.

The cost for doing this can possibly be collected through the dog licensing fees through out the state. Say an additional dollar for every dog that gets a dog license in the state or county according to law. This would bring in lots of revenue.

To some all this up! Beware of government officials elected and appointed to our high courts. It only takes one to take us ten steps backwards after all the work that has been done in the last 15 years or so.

If stopped with your service dog, exercise your civil rights and refuse to be a couch potatoe. Educate, Educate and keep educating!

Many toes have been steped on with my comments, however if you do not agree, at least respect my rights for speaking my feelings.

SAM in the Midwest

Reading the review : Buying Sickness by Cal Montgomery ...I would just like to comment that perhaps he was too quick to jump ship on his doctor. Celebrex is likely a safe drug for many patients...however you have to be the right patient. I think Celebrex is still a good drug...but for the right people. I think no doctor should have been advising a patient at high risk of heart disease to take this medication, or perhaps other COX 2 inhibitors. Maybe you have very low risk factors for heart disease and therefore are likely at a very low risk for the adverse effects sensationallized by the media. All drugs come with risks however...and seeing you had already tried the medication with no results the potential benefit probably did not outweight the risks. I think it is important that people are well informed before they take medication and that they have an open dialouge with their doctor or pharmacist.

Who ever wrote the review for Million Dollar Baby needs a wake up call. Boxing was used to describe and illustrate a more broad and personal meassage. All three characters: Frankie, Maggie, and Morgan Freeman's character are all very honest people in the movie...which ties in with letting go and the fight we all need to partake in this society and world. The movie was a masterpiece, which depicted a different side of Clint (he directed Mystic River; extremely raw and intense, while this film took a different look on things in life. So do some philisophical thinking before you review movies, know the director and producers and know what they have shown in the past to get the gist of the movie. A movie like Million Dollar Baby goes a long way, a movie like War of the Worlds dies short with a poor actor and no really touching moments that we as human people can understand and relate to. Thats all I wanted to comment about. I take no offense I just feel the person who wrote the review did not know what they were talking about. Thats my opinion anyhow!

I was reading Cal Montgomery's response to that guy who said disability rights don't apply for Terri Schiavo. I really admire you, Cal. I think you described the issue really well. Too often rights activists of various kinds have done this. I was reading this thing about the gay rights movement and how they would dress really conventional and such for their marches - no drag - because they wanted people to decide they were really just like everyone else except what they did in bed and with whom. That made it hard for the gay people who didn't fit gender stereotypes in other ways. Also, the gay men were pushing down the lesbians - and the feminists didn't want to deal with lesbians because it was too controversial. Those issues I believe were eventually worked out. But the whole thing reminds me of what the anonymous webmaster of www.gettingthetruthout.org said about the people who said there was no hope for her vs the people who said she could be cured of autism:
"They both declared an identical view of the world in which only people with certain innate traits were deserving of freedom. The only difference between them was where they drew the line. I needed someone to show me there didn't have to be a line."
A lot of rights movements so far have just been moving the line. Gay people are "normal" and therefore OK, so are blacks and natives and women. But why do you have to fit certain criteria to be considered an OK person? I hope the disability rights movement can be the first to go beyond stretching the line and just get rid of the line. Even someone who sadistically hurts people is a worthwhile person, although their actions are wrong.
Ettina
PS: If you want to e-mail me, go to my website first. It's a bit tricky to e-mail me and I'm tired of repeatedly explaining it. If you just e-mail me without checking the instructions I have at my website, it will not get through

I wanted to comment on an article by John Kelly titled Incontinence. His essay is well written and makes its point clearly.

I actually approve of Oregon's Death With Dignity legislation. However, I now have another perspective which broadens my sensibility about the disabled. Thank you.

Now a question: I have a phrase in my mind and I am believe it came from an article in The Ragged Edge. The phrase is "pity, the kissing cousin of disgust." Anyone know the origin of this?

I'm in Arizona, and in the Tempe area, they have been experimenting with the visitability concept.
I live in Northern AZ, in the mountains, and myself and a few other wheelchair users are trying to get the concept adopted up here. We are hitting walls, so to speak, with the builders, and I was wondering if you have any hand out info that you could send me. It would be a lot of help if I had something to give the builders so they wouldn't think that we were just "picking" on them.

Thank you for anything you can do to help the cause.

Sincerely,
Brian Garfield
blackfootj@cableone.net

I just finished reading "Too Late To Die Young, Nearly True Tales From A Life" by Harriet McBryde Johnson. What a wonderful book!! I could hardly put it down. She writes clearly and with so much feeling of her everyday life. It amazes me how much she has accomplished and how she never gives up, regardless of the obstacles in her path. She is an inspiration, especially to those of us not struggling with what she deals with every day. I hope she continues to write in her intelligent and thought-provoking voice -- I am waiting to hear more of her daring deeds!!

RE: Mad as Hell--and fighting for our lives by Zen Garcia:


I was recently briefly employed with Sunbridge of Griffin and the care mentioned in this article continues. I reported the CNAs for all leaving the residents unattended at once and even leaving residents so soaked in urine that blisters were formed. Nothing was done to these CNAs so I submitted my resignation. I was not even allowed to write them up! The only thing that was done by the administrative staff was a review of their job description. While working out my notice, I had to call the physician about one of the residents and the physician HUNG UP ON ME!!!! That was the last straw!!! I only had 2 days to go to complete my notice but I could not do it!! I refused to be part of such NEGLECT! My specialty is Med/Surg on a hospital floor but my passion is Geriatrics. However, this facility is only concerned with how things look on paper. There were incidents where resident injuries did in no way match the CNA account of what happened. But these individuals continue to enjoy a paycheck for doing absolutely nothing. The more the nurses complained, the more work that was piled on the nurse. ABSOLUTELY NOTHING HAPPENS TO THE INDIVIDUALS WHO ARE RESPONSIBLE FOR KEEPING THESE RESIDENTS CLEAN AND DRY AND INJURY-FREE! This information is accurate as of 01/26/2006!!!! That was when I finally had enough and told them that I would not be back!

From Passing to 'Coming Out'is a wonderful story I am a person with a disability who is thirty years older than Candice. She has reaffirms my belief that we should accept ourselves for who and what we are. I was born with my disability and had no opportunity for passing myself as a non disabled person. My daughter who is thirty five has the same disability as I but is able to pass and has done so. I tried to explain to her as she was growing up that this is not a really good thing to do. You will always live in fear that sombody someday will find out and then what do you do. Friends who do not know may feel bad that you could not trust them. If an employer happens to find out he or she may find you untrustworthy. The psychological stress and the feeling that there is something unworthy about you is something that is very unsetteling to a person. You may think you are successfully hiding the situation but you are not. It is never hidden in the caverns of your mind but it is not. It's smack in your face every hour and every day of your life. I have done a great deal of special education advocacy during my life and I have a friend who has a child with fine motor issues. She thouught it was a good idea when his teacher bought special pencials for all of the kids in his class. I don't think itr was such a good idea because it takes a way that very fact that he is different which promotes passing and all of the wonderful psychological benefits that go along with it. Will the next teacher in the next grade do the sam? Teaching self worth is best taught when we are children. Having a disabilit ymakes you no less of a person than anybody else.

There might be a greater risk of you having a child with a disability the same as you but no one knows that for sure. Family is funny stuff. By that I mean most of the health problems that occur are going to be your fault regardless if they are realted to your disability or not. Everyone needs to find a scapegoat. Just for fun mention in a passing statement how great your sex life is. Just watch their jaws drop. You do not have to go into detail because they won't want to go there. Sometimes it's fun to watch people who are not disabled freek out. I read somewhere that the majority of children with disabilities are born to parents without disabilities. What will your family say if you give birth to a healthy baby boy or girl.

You don't know me and I don't know you but I am so proud of you that I am sitting at the keyboard almost in tears. Your baby will love you no matter what or who you are.

You are no longer a fugitive from yourself. For what it's worth that's my opinion.

Jim
PS My daughter got cautht passing.

Re: http://www.raggededgemagazine.com/0903/0903ft2.html
"Coming out vs Passing"
God, I thought I was looking in a mirror when I read this piece. From the fourth grade until I was actually granted the status of an official Disabled Person in 2004 at the age of 43, I've been passing too...and I *kept passing* as one disability became two, three, four five...Passing was killing me so I had to stop.

Everything she said rang true for me, and made me sad.

The biography didn't tell enough! You see I am doing a biography of Helen Keller and I didn't get the important information I needed. In case you are wondering what I was looking for...
Who all did Helen Keller fall in love with?

I was horrified to read the story of Shakeel and his group who went to the Dr.Phil show and were treated like a leper. The rude employees of Dr. Phil and then making them be seated behind the camera in that awful spot where they would not be able to see or be seen. I have a disabled child and im furious over this situation and shame on Dr. Phil And his employees!!!!!!