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Re: The Personal Helen Keller, Returned to Us:
What is disappointing beyond disappointing is that this book is not released in an audio form accessible to my neice, Ariel, who is just recently blind and still struggling with unqualified instructors to learn Braille. Or for my daughter, Brianna, who has disabilities that interfere with reading and who runs a the Library at our local CIL and prefers alternative format for her patrons and herself. Shame on the NY University Press for not getting with the program, acknowleding readers with disabilities and respecting our needs for alternative format by releasing this in an audio format.... maybe a project for next year, eh?

Deidre Hammon
Reno, NV
Wed, 14 Sep

Re: The Way Things Are:
Bravo, Cal Montgomery, for taking on such a formidable task as reviewing Foucault!

I appreciated your reflection on alternative futures where brains and brawn would have different relative rankings. I am halfway through Kim Stanley Robinson's book "The Years of Rice and Salt" that uses the technique of alternate history very effectively to shake up certitudes and shake out social constructions of reality.

I too have been dissatisfied with definitions and heirarchies of disabilites - even though I "only use a [manual] wheelchair." The section of your piece that most stands out for me is where you comment on the insularity of the US:

Sometimes it seems as if the way things are is the only way they could be. For those of us in the USA this appearance is heightened by the one-way nature of much of our communication with the world. We are exporting more culture than we are importing, and the result is that we do not have many people to tell us about ways that things could be different.

It may simply have been an appeal to an ideal that you mentioned Universal Design in the next paragraph or maybe you judge it to be an important tool in itself for the kind of seeing that you and Foucault call for. I use it as that sort of tool.

I find it is a helpful way to leapfrog US cultural hegemmony and restore two-way communication. I use Universal Design as a perspective for examining the travel & hospitality industry. In fact there will be an entire of the Review of Disability Studies dedicated to travel coming out shortly. Daily I post on disability and travel at the Rolling Rains Report (http://www.RollingRains.com) and find that it is an enlightening way to engage with the disability community worldwide.

To use some Foucault-inspired jargon, "How does the 'tourist gaze' change when the subject is one with a disability?" I hold out hope that there will be some important answers for us as we pursue this subject.

Scott Rains
San Jose,CA
Tue, 13 Sep

Re: Segregation and discrimination among the Boy Scouts:
Somewhere in my Bible it states "It is not for the lame to halt the quick."

On a motorway you are driving a Maserati in the fast lane, you come up behind a slow beat-up van, do you get angry and frustrated!!! Is it safe!!!!

The Boy Scouts are not responsible for the young man's condition, and they do not have to pay through the arse for the way he is.

I had cataracts as a child, I could not enjoy sports etc. In 1979 I rowed 750 miles to raise money for blind kids.

Start up a phab section in the Boy Scouts (Physically Handicapped, Able Bodied). Let the fast have their fun their way, and let the slow have their fun, rich tapestry of life.

Simon Arnall-Culliford
Southampton UK
Sun, 11 Sep

Re: The Personal Helen Keller, Returned to Us:
I was very impressed by the article on Hellen Keller. I am a blind person. In many, if not most, respects very little has changed. It is still a battle to be independent, get a job that equates your ability, and simply be treated as a "normal" person. Improvement is slow, but I suppose there is some.

Fri, 9 Sep

Re: Game On! :
I agree that "Murderball" is an incredible movie, one of the best, in fact. However, it's not flawless. There's a moment in the film where one of the athletes is frustrated because people think he's going to the Special Olympics. He makes clear that we've still got a heirarchy of disability: physically disabled on top (preferably war-wounded), cognitively disabled below, and (though he doesn't mention it) "mentally ill" bringing up the bottom. We need to think about the effects of heirarchies not just in an ablist system, but also within the ranks of the disabled.

Jenna Lahmann Gillespie
Ithaca, NY
Mon, Aug 29

Re: The Personal Helen Keller, Returned to Us :
Anne Sullivan also had a visual impairment, and in the dialogue of The Miracle Worker referred to blindness as an "advantage" in teaching Helen. Helen's mother responded skeptically, and that was the moment I remember finding most fascinating in the script, even when reading it at age nine. Thanks, Susan, for your review and chronicle.

Evonne Acevedo
Mon, 22 Aug 2005

Re: Buying Sickness :
For many years I was not in any way nor did I consider myself disabled. I think because I worked in and around the medical profession for so lon, that I could always find someone else worse off than I was. I grew up closely with cousins where there 3 out of 4 siblings who were born blind. I learned so much from these people, not only about disabilities, but about survival. This was in the 40s and 50s when there wasn't any kind of protection really for people with disabilities, even though the sitting U. S. President at the time was disabled.

I grew up in that city and saw how people treated the disabled---whether it was someone who was "shellshocked" from WWI or someone who walked with a profound limp that came about as a result of WWII. By the time the Korean "War" (excuse me: "conflict") came along, we had large numbers of the disabled returning and the institutions locally were still filled up with the WWII maimed and injured---THIS does not even get near to the numbers of those who through medical research were able to survive longer from accidents, birth defects, disease or physical or mental conditions that up until that time people did not survive for a "normal" life span--what ever it statistically was at that time.

The Korean conflict gave the medical researchers lots to work on as did the Vietnam conflict, the 1st Gulf conflict and now the Iraq "situation" are doing the same for big pharma as well as the medical researchers. The disabilities of all these returning vets PLUS the general population who have disabilities due to as I said the above situations have created a huge and profitible industy not only with the mega pharmaceutical companies, but ALSO with the nursing home industry---of which Tenn.Sen. Bill Frist's family owns a sizable chink on a national scale.

This is not chump change, and war and sickness go hand in hand with providing these folks like Frist with a lucrative style of living. There will be no nursing home for these folks, or drugging up of these family members. No siree, only the finest will do and if their family members have a disability problem, they won't do what the Kennedy's did and institutionalize they will have the financial resources (as a result of selling sickness) to take care of their own in the style we would all like to become accustomed to.

I have watched the pimping of drugs in many hospitals over the years and after my thoracotomy in 2001, I was put on so many drugs, it made me sicker to where I could hardly move let alone keep any food down. After 7 weeks of this ,I called my doctor and told her I was discontinuing all 19 medications because I was convinced that my body was so toxic, it was in the process of killing me. This was during the 911 crisis, and my brother had died in D.C., so stress for me was very high. Within 2 days though, I could get up without assistance and the severe nausea stopped, and I was able to function as a human being.

This is a classic example of selling not only sickness, but death as well. I know for a fact that the drug "therapy" was doing exactly what the doctors have sworn not to do----the drugs were doing me great harm. My doctor fortunately listened to me, and was apprehensive for me, but she helped me start back ONLY what I needed.

I too started on Celebrex, then to Vioxx, and finally to Bextra. All of these worked only for a little while, and while I now occasionally do take a pain Rx, it is somehing I can control the dosage and still be able to function. I too have daily pain from other disability situations, and on a daily basis I deal with my own demons as a result (i.e. anger and discouragement).

But each day is a challenge and when I have a good one I savor it. I live by the motto--"Where ther's a will, ther's a way" and I don't mean religion of any sort---I grew up with my Irish mother saying "Suffer in silence" and that is bull---, and no way to live. The medical, pharmaceutical, and nursing home industries have improved the quantity of lives, but have done damn little to improve the qualities of our lives!!!!!!

Eileen Horner
Shoreline, WA
Wed, 10 Aug

Re: The Carrot or the Stick? :
One mouth can wield so much power, whether it be positive or negative. Two years ago on vacation at a NJ resort, I was subjected to public scrutiny due to the uneducated about Service Animals. The person yelling at me to "get that dog out of here" refused to listen or take the literature about SDs I offered. He was in the 'power position'-a cashier on a small riser and a large audience of shoppers! As several others tried to get this fellow to listen, he called security..who came, took one look at me with my SD, gave the fellow a tongue lashing, and left. I still had to pay for the items I'd selected,and had my change thrown at me. Some of it landed on the floor, which of course, my SD retrieved, much to the amazement of those standing nearby. I stared at the cashier, as did others nearby.I was awestruck not only by the first incident, and the change thrown at me but by the obvious level of anger this person had risen to. Several in line behind me dropped their baskets and left the store. I was about to shoot my mouth off but realized it not only would have been futile and raise the ire of an already infuriated young man, but more importantly, would make me appear as ignorant as he. I left the store and once on the boardwalk, a Police officer came up to me and asked if I'd had any trouble "in there". I replied that yes, I had, but it was a case of ignorance, attitude,and desperate need of SD education on the employer's part. After all-what could I possibly gain from lodging a complaint? The store was a boardwalk dollar store, staffed by International Students who obviously had little or no experience with PWSDs. In less than a month, the students would be gone and the store would be shut for the winter. I sure didn't forget the encounter, and somewhere in this world is a young man that possibly..just possibly, LEARNED more when I learned to keep quiet for once.

Joan Tease
Wellsboro, PA
Thurs Aug 4

Re: Game On! :
"Murderball" sounds like a great movie and I'll see it when it comes to Madison.

However, I did not like the misogynist paragraph about women. Are not women also quads and athletes? and I for one don't want to see how 'things work'.

This was offensive to me and to women in general and makes me have reservations about this movie already, before even seeing it.

Elspeth Krisor
Madison, WI
Wed Aug 3

RE: 'Paranoid' MO Gov Bars Activists From Open Meeting, Speech :
I am appalled that the poorest in the state are denied health care when even above average income have a hard time paying medical bills and medical insurance..

I am appalled that people must give up part time jobs or die because the part-time job might pay over 325. per month.

I am appalled that the governor attempts to justify denial of medicaid to 100,000 by suggesting "widespread fraud" because an alleged 26 sex offenders obtained Viagara on Medicaid. First, Medicaid does not pay for Viagara and if it did, what has the alleged "26" have to do with 100, 000 Missourians without medical coverage.?

Blunt policies and legislation are causing real damage to Missourians and Missouri. No one wnats to move here, work here, live here...because of Blunt legislation. Adjacent states will be patroling their boundries to keep Missourians from pouring over the boundry of our oppressed state.

Carolee Wood
Columbia, MO
Wed Aug 3

Re: The Lawsuit Dilemma :
My wife and I purchased a saloon 9 years ago. We were informed of everything legal in the way a business is sold. Eight years later, we are informed by a server from the courts that we are being sued . The plainteff is Jarek Molski. Now to our amazement the charge is that we are not ADA compliant.

In 1996 when we purchased the business and not the property it sat on there was not one, and I repeat, not one person on either side of the transaction of this sale, said anything about ADA compliance. The state of CA made absolutely clear how we are supposed to pay sales tax, gov. made clear on how to pay income tax, state also made absolutely sure on how and when to pay workmens' compensation, but in no way, shape or form did anyone tell us about the ADA.

I'm sorry, but if yop are not in a wheelchair or anyone that you know is, or not one customer tells you of the situation that they (disabled) face, then we are ignorant. Not maliciously, as everyone wants to believe.

Molski is not the brains behind all this. He is nothing more than a pawn. He would love for you to believe, but it's simply that he does this more out of anger than than anything else. He honestly believes that taking people's hard earned money will free him from his shackles. I'll bet 100 to one that with all the notoriety and cash he's still a miserable Œlack of compassion' person.

Frankovich is the brains behind this. I've seen court documents on him in 1990 of a case involving one of the major studios. We had absolutely no warning of this lawsuit , in fact Molski was NEVER even in our saloon that he claimed he was in.

The building was built in 1890s, by all laws governing the state of CA we were in compliance with everything. And we were in compliance with federal.

Frankovich picks on middle-class businesses, he doesn't go after major corporations. The reason people settle isn't that they are in the wrong; it's that a business can settle for $20,000 and be rid of him, or fight it and risk a two or three million dollar suit that may go against you even on a technical decision. Frankovitch even sent in a photographer claiming to be from my landlord's management who photographed my estabishment because Frankovitch and Molski were starting to lose cases. After all, when he said he was in my establishment was Sept, 2003. When we got the letter saying we were being sued it was a year in a half later stating that he had all this trama in my establishment.

You know what? I have much more to say, but no one wants to hear or believe it.

Dalton Holladay
Cambri, CA
Sat Jul 30

Re: Business Strikes Back :
If I'm frustrated and wondering what's really fair when I'm in a hierarchy -one based on body type, gender, race, or many others -- I'll switch the higher group with the lower group and play the scene over again. Here's one that always puts a smile on my face:

In our place of business we have ceilings with a maximum height of six feet. Ambulatory people complain that they cannot work in the buildings because they are inaccessible. Most ambulatory people have to stoop to walk, being especially careful to duck around light fixtures and vents. They must bend over to obtain documents from a three-foot high filing cabinet. They say they feel like they are working in an underground coal mine. Each building has only one set of stairs. Ambulatory employees complain that the steps are inconveniently located. New ambulatory employees and visitors who walk must search for the stairs, which are not well marked. Even though each building has several elevators, they are reserved for use by people who have wheelchairs.

The wheelchair riders sympathize, but only see the bottom line. "Gosh! Do you know how much money it would cost to raise the ceilings? Do you know how much floor space a stairwell takes? We'd have to make our twelve-story building sixty feet taller and remove four offices on each floor. Our stockholders wouldn't consider the outlay of millions of dollars for those changes cost effective. Your request is not a reasonable accommodation." The company has a large campus with several internal streets. At the intersections, the signs that indicate it is safe to cross either say ROLL or illuminate a picture of a wheelchair rider in motion. The walkers ask for the signs to be changed to say CROSS so all will be included. The management finds the suggestion ridiculous.

This role reversal appears in the book, Clueless at the Top, www.cluelessatthetop.com

Charlotte Childress
Eugene, OR
Sat Jul 30

Re: Activists call 'New Urbanism' to account over lack of visitability :
As an "alum" AmeriCorps*VISTA with United Cerebral Palsy of Tarrant County's "Home of Your Own" Program for 2 years, I believe that "visitability" was, and still is, one of the most important change(s) for everyone, not only those labled "handicapped" to see come about...and not only in America, worldwide. What more can we do? Here in Fort Worth, and elsewhere in TX, the state, cities, counties, give lip service...even the Mayor's Committee's for citizens w/disabilities, the universities and community colleges with their "Students w/Special Needs" Departments, do not address this, and other areas that are of utmost importance in order to bring "Handicapable" and disABILITY a reality to so many today...and in the future. There seems to be so much "lip=service" and very little decisive action by those in a position to JUST DO IT! It's cost effective, economical in the short and long run, and not only empowering, it contributes to all citizen's independance and cuts costs of "rehab" to zero. If done correctly to begin with, the cost to build, finance, and design with the future in mind, saves trillions...so it makes "cents" and bolsters "accountability."

As a "retired" special ed teacher, and volunteer on the Deaf Advisory Board of the Goodrich Center for the Deaf and Hard of Hearing in Tarrant County, I am very active presenting programs for the Self Help for the Hard of Hearing (SHHH) related to accessible technology...not only for the Deaf and HH community, but ALL struggling with disabilities...from infants, to Seniors that need and want guidance, education, access to resources (and much more). I consider myself "retread" and have a strong desire to continue to advocate and assist in pushing the envelope to see these goals blossom and come to fruition...and look forward to hearing from you and others as to "where, when, what, and how."

Tobi Faye Kestenberg
Fort Worth, TX
Sat Jul 30

Re: 'Paranoid' MO Gov Bars Activists From Open Meeting, Speech :
I am writing this response to the claim by the ADAPT organization that they were barred from the Governor's speech. I write this not as a Republican or Democrat, or to defend Governor Blunt and his staff, the Highway Patrol, or even as a member of the Governor's Council on Disabilities -- which I am -- but as a witness in the room where the incident occurred to share some of the physical facts.

1) Plan Ahead! The Show Me ADAPT group knew the estimated time that Governor Blunt was supposed to present his speech. We had a long fifteen to twenty minute break before the introductory speakers began and the Governor came into the room. I know I entered the room late when our Chair was already introducing the first speaker, and there was no sign of the Show Me Adapt group present in the hallway at that time. Even if only some of the group had been present early they could have easily entered the room and moved down to the area where only a news reporter was sitting. Yes, this portion of the room could have accommodated the group.

2) Common Courtesy! The Show Me ADAPT group arrived after the speakers had started. Except for the area where at least 4-6 ADAPT members were permitted to stand and listen to have crossed the room to the area that could have allowed more people would have been extremely disruptive for the speaker (Gov Blunt) and the rest of those present in the room. Even live theater and sometimes movie theaters don't allow people to come in once the play or movie starts. Once the Governor started speaking the room was crowded on the entrance end. Weelchairs and scooters made it difficult for people to walk through them without moving around the wheelchair users and then walk down across the back wall behind other seated council members and guests. In fact when the Governor's staff or Highway Patrol did let the ADAPT members in, close to the entrance door, it distracted me. I was to the far right, on the same side as they entered. I must add that, yes, the group that did come in were quiet and respectful.

3) Safety for the Governor! As far as I know, no one is allow to go behind a Governor (especially as close as they would have been) when speaking, for obvious safety reasons. The Governor's Staff and Highway Patrol are first and foremost responsible for the safety of the Governor, with everything else following as deemed possible. By the way the Governor did start to head back to the door he entered and his staff directed him to the other door. This is a common occurance regardless of the event. Staff often direct a head of state to a less crowded direction for both safety and speed. Very often the Governor has another commitment and must arrive as close to the designated time as possible without out distractions slowing down his/her progress.

Let's turn to common sense and look at the whole picture related to this event. NO, I AM NOT DEFENDING THE GOVERNOR, his Staff or the Highway Patrol. In this incident I am only explaining the facts and explaining that the effort to allow some of the group into the room after the Governor started his speech showed a positive, good faith effort on the part of the Govenor's staff and the Highway Patrol.

Let's fight the real battles and not make up paper tigers where they don't exist.

Michele S. Ohmes
Mon, 1 Aug

EDITOR'S NOTE: For another article about the broader issue the Show Me ADAPT group was protesting, read Governor's plan to avoid disabled turns to nightmare in the Columbia (MO) Tribune.

Re: The Carrot or the Stick? :
I use a service dog and carry a copy of Delta Society's Service dog law and description with me to show if I am questioned. I also carry my original SSI disability letter, with the official blue and red stamp to "prove" I have a disability as my disabilities are hidden. I have been welcomed at most places, but some places not only do not welcome us, but they have a well planned out stratedgy for getting around the law.

I used to caution those in the disability community not to "go after" those who are non-compliant in a heavy handed way, filing lawsuits, but I have now come to realize that it is not that those who do not comply are not educated, it is they do not want to be educated, and do not want to comply. One thing is sure, it is confusing to the service dog to perform correctly only to have his partner screamed at. It disrupts the training of a dog, because the dog thinks he/she did something wrong. My dog is too valuable to me to allow her to be treated this way.

I now believe that we need a law to protect persons with disabilities with service animals that is equal in strength to trespass law. Interfering with the access of the person using the service dog would then be a "reportable" incident. A call to the police would result in a police report. This will put an end to false acusations of tresspass, disrupting behavior, questioning the disability or training of the dog, and false acusations of assault. I myself have been falsely accused 3 times of crimes by those who would deny access. The police are powerless to "take a report of denied access."

I am not sure a huge fine is necessary. A maximum fine of $500 would do. But in order for it to be a "reportable" incident it has to carry some jail time. Up to 30 days is the trespass law in Massachusetts. So, if a store (or other public accommodation) denies access, we can call the police, and they can take a report. This will protect us from false acusations, avoid huge fines for small stores, provide one-on-one explaination of the law at the time, prevent the employee from lying about it to the owner, and, if we haven't had our stomach upset too much, we can still get that burger! 

I think it would not be necessary to "prosecute" based on the report, especially if after the report is writen the law is complied with. The purpose of reducing the fine, but making it a "jailable" and therefore "reportable" offence, is to allow access and end false criminal reports made against the person with the service dog. Anything less is de-facto segregation. Not unlike a sink for folks who are white, and around the corner a sink for those folks who use a service dog!

Here in Cambridge, a police officer informed me, "I don't care about the recent training we recieved, if the store calls and wants you out with the dog, if you don't leave I am going to arrest you for tresspass." I have news for him. I am not going to leave anymore. I, like Rosa Parks, am tired of all this. I am not gonna sit on the back of their bus anymore. I suffered a false arrest by the police at CVS, threats of arrest at a sub shop, and a truck driver who refused to move his truck from handicapped parking space and called the police falsely accusing me of assault and battery!!! The police in every case was sympathetic with the party denying access. "If they don't want you in there, why do you want to go in?" My answer, "Gee, officer, I see the store is open, and people going in and out doing their business. I want to go in too, what's wrong with my money?"

The only problem with education is the scope of service animal uses, making it difficult to cover all instances, leading to stereotyping both what a person with a disability might look like, and how a dog might perform his job. Especially for those with severe hidden physical disabilities, where dogs may perform unusual tasks, not picking up keys and opening doors. So, the problem I have with the "training" I have seen so far is that the venue thinks they are now dog trainers and doctors able to judge for themselves if the dog is trained to perform a task for the disability.

I think it is essential to focus on whether or not the person has a disability as defined by the ADA and is therefore protected from discrimination. One would hardly question where the wheels on the wheelchair were manufactured. One would quickly "see" that the person was disabled therefor allowing the wheelchair to enter is not questioned. The problem with service animals is the whole focus has been on the assistive device, the dog, and not the person. I think the training should be how to determine if the person is protected by the ADA. I hate it when someone asks me what is your dog trained to do? "She helps me to walk." "You look like you can walk just fine, my mother has arthritis and doesn't need a guide dog"; or "Well, my dog can smell my liver disease, and warns me and then tries to get me to lie down." No, I don't think so. Not what I want to deal with when out with my friends. I much prefer informing them! "I have a disability as defined by the ADA and need the assistance of the dog." I know many in the disability community dislike this approach, but really, how can you ask for a reasonable accommodation if you do not inform them you are protected under public law?

Kathryn Podgers
Cambridge, MA
Sat, 30 Jul

Re: Segregation and discrimination among the Boy Scouts :
My son and I just returned this morning from his first year of summer camp as a Webelos 2. He has multiple disabilities. I recognized much of William Peace's article in my experience; although it is now 2005. Discrimination and stigma, alive and well.

My son has been in Scouting since he was eight years old. His disabilities have never been a real challenge until Webeloes. We had to change Packs; and I had to take a leadership role in order to advocacte for his rights. I not only became a leader for his Den but a Pack Trainer as well. The Pack quickly became aware of my son's abilities; and his disabilities blended into the woodwork. Then, we began to participate in Council events...

We went to the Council Camporee last Spring. The boys worked hard for this opportunity, practicing to work as a team in spite of my son's challenges (Cerebral Palsy, Epilepsy, Bipolar Disorder, ADHD, and retardation). They did well. And, like the previous letter I just read, accessibility was a major concern. While my son is not in a wheel chair, the rough, uneven terrain and long distances between events made the experience less than tolerable. However, the boys held him up in the Scouting way. We were told that they would be judged on sportsmanship and working as a team, not speed or even accuracy. They gave it their all. Admittedly, my son slowed them down in all events. The most memorable event was the "Pop Nye Challenge". We thought for sure this couldn't be a timed course. As my son struggled to work his way through the course, everyone cheered; as the boys helped him through the many obstacles. Even the judges were in tears as he fell on the rope bridge, nearly hitting his private area. We thought certainly our boys would win the award for teamwork, after this. They didn't. At the closing campfire, our boys struggled to hold back the tears. Because of my son's disabilities, the other boys had to "suffer". They were resentful as a result. The following den meeting we discussed what happened and rewarded the boys for their efforts.

So, my son went to camp... We went to the parental walk-through. We let the camp staff and management know that our son has multiple disabilities; which they forgot by the time we returned.

1. I have a Service Dog. They never saw a Service Dog before. I was thoroughly chewed out by the Ranger and told that "pets" were not allowed in camp. I provided documentation and signed a form to release them of all liability. The camp provided us with a private hut to sleep in. However, this hut was far away from the rest of the camp.

2. Boys were assigned to "Dens". This, by itself is not a challenge. However, for a child with disabilities. A den with multiple disabilities, being placed in a den with other boys who were on their own would have been best. My son was placed in a den with seven boys all from the same place. Thus, he was ostrasized not only for being alone but for being different.

3. The camp program was not conducive to boys with disabilities. A boy with developmental disabilities requires more time to complete projects. This was not allowed. All boys were rushed through the program. When I discussed this with the administration, I was shocked at the response I received.

Don't get me wrong... The camp did all they could to make sure my son had a good time. (My son cried most of the time he was there.) They couldn't understand why parents of disabled children expect reasonable accommodations for their children! They should be treated like everyone else!

4. Hikes. Because he couldn't do his age-level hike, I tried to let him do the lower level hike. I was told that because he was no longer a Bear or a Wolf, he couldn't go on the hike; and if she let him go on the hike, they would have to let all Webelos go. This is wrong! Not all Webelos have Cerebral Palsy or Retardation!!!

Okay, what does all of this mean??? BSA has programs and information for councils, districts, packs, dens, troops, leaders, etc to use concerning youth with special needs; however while this information is available, nobody knows it exists. Additionally, in "A Guide To Working With Boy Scouts With Disabilities", the National Council of BSA suggests that councils suggest a Council Advisory Committee for Special Needs. Few have them.

I will not allow my son to continue to have bad experiences in Scouting. They are not necessary when education is readily available. However, I am only one parent. My plan is not to have units of single disabilities; but I envision a unit bringing all disabilities together.

Lisa Partaker
Yucaipa, CA
Sun, 31 Jul

Re: John Roberts Bad News for Disability Rights:
Thank you, Mary, for beginning this discussion of Roberts' questionable understanding of Constitutional law. Were Roberts' history concerning civil rights solely based upon his work for Toyota, one could suggest that he was merely voicing the views of his employer and providing the best possible argument for his client.

However, this is not the case. His history concerning the civil rights of many groups, including people with disabilities, suggests his "understanding" of Constitution law is limited at best. While he cannot be blamed for the U.S. Supreme court's decision in Toyota -- it should have been expected considering the legal precedent of Sutton -- his articulation of Toyota's position (that because Ms. Williams could brush her teeth, for example, she wasnít disabled) reinforced the discriminatory behavior of the court.

As many of us who do legal analysis have stated before, the court's ideology in these cases has clearly shown that they do not perceive the A.D.A. as civil rights legislation or Disabled people as worthy of anything but charity.

Carolyn Tyjewski
Davis, CA
Tue, 26 Jul 2005

Re: John Roberts Bad News for Disability Rights:
I would need to ask John Roberts questions to clarify his position. To base my opinion solely on Toyota v Williams would be bias. If Sandra Day O'Connor based her entire opinions of ADA on Roberts' argument, then she is to blame for her research on the issue.

My husband and I are both deaf so we know the importance of the Americans with Disabilities Act! However, there are "abusers" of this Act and their attempts to be labled as "Americans with disabilities" are actually weakening the law for those whom the law was meant to protect! From your writing and my reading of Toyota v Williams, her "disability" resulted from the type of work she was doing. Our deafness never ceases! Persons' disabilities in wheelchairs never cease! Blindness never ceases! This is a daily disability: one confronts barriers in employement and "tasks central to daily living" -- attempting to purchase new electronic items in which deaf persons have no sales representative to explain the items, for one example. I'm sure Ms. Williams has never experienced "discrimination" outside of her work force.

Perhaps, how this "problem of definition" can be resolved so we who are truly Americans with disabilities can be protected, is to have Senator Hatch, the originator of the act, amend the Act stating its "original intent." Boy! how abused we Americans with disabilities are by private citizens as well as corporations!

I ask: Did Ms. Williams file for Worker's Comp? At least, this would had paid for her medical expenses, her time loss from employment and assistance in having her placed in a position within Toyota that would not had complicated her "injury." Sad that she attempted to use the AMERICANS WITH DISABILITIES ACT instead; she and her lawyers HURT us more than John Roberts!

Mary Yamasaki
McDonough, GA
- Sat, 23 Jul 2005

Re: John Roberts Bad News for Disability Rights:
It's important to note that attorneys are hired guns expressing their clients' opinions rather than their own. So what an attorney writes in a brief provides no indication of what he himself thinks about the issue. As an attorney, Roberts wrote that Roe should be overturned. When asked his personal views during his 2003 confirmation hearings, he described it as the established law of the land and said he saw no reason why it should be overturned.

So we have no idea where Judge Roberts stands on disability issues. It will be important to ask our Senators to find out.

W A Thomasson
Oak Park, IL
- Thu, 21 Jul 2005

Re: Sandra Day O'Connor and disability rights:

Good summary. I couldn't agree more. O'Connor's position, or perhaps the lack of a position, was also obvious in the latest Supreme Court case involving Norwegian Cruise Lines' failure to make ships accessible specifically to disabled American passengers -- another picture-perfect example of the Court's inability to defend and support all American civil rights, and the Congressional intent and resolve of legislators who passed the ADA. Truly for the Court, we are a country of mind-numbing laws, and not of people.

Midland, TX
- Thu, 21 Jul 2005

Re: Sandra Day O'Connor and disability rights:

Sandra Day O'Connor, like so many other people, is incapable of understanding the many dimensions of disabilities and the more subtle -- but just as troubling -- manifestations of disability. There is a whole subset of us who have hidden disabilities. Nothing obvious can be seen on the surface, but something is perceived as different or askew -- a tone of voice, a posture, a way of walking etc. A conversation will be sailing along and then a person puts a hand in front of her face and her hearing-impaired listener misses the entire paragraph spoken during that time. Another person has a petit mal epilepsy attack or a fade-out from diabetes and misses something else. The things that are missed could make the difference between getting or keeping a job, saving a marriage or a friendship, and so many other things.

As a person with a hearing impairment, I cannot begin to tell you the number of conflicts I have been involved in because people simply did not believe that I missed something because the rest of the conversation was going well until, say, a phone rang or someone else nearby spoke. Some of these conflicts are horrendous indeed and I have suffered through them all my life -- and I am 56 years old!

These things play out on the job too and were my employer inclined to be less understanding, I would not even be working today.

The ADA states that a person must have a disability that limits major life activities (working is sure one of them!) or must be PERCEIVED as having such a disability. The ADA says NOTHING about disabilities being mitigated or not.

O'Connor was wrong and Roberts is wrong. I fear, however, with the current government we have in office, we are not going to get anybody better, much as I oppose the new nominee for many reasons, including the ones outlined in this excellent article.

Ms. Billie M. Spaight
Richmond Hill, NY
- Thu, 21 Jul 2005

Re: 'No more food, water' to protesters, says TN Gov. as takeover enters 23rd day:

Thank you for addressing the problem we disabled face in the state of Tennessee at this time. I am disabled and have been now for 12 years. I worked and paid taxes for 36 years prior to having a brain anurysum and stroke, and was insured by Nationwide Insurance -- or thought I was, but having to pay out 20 percent of the huge bill over time has caused me to lose everything and all of my pride as being a working able bodied law abiding citizen.

When I applied for help with my medical bills my husband and I paid $100.00 a month to Tennessee for my TennCare Insurance, and when I got Medicare after 24 months, I was dropped by TennCare and put on TennCare Select which paid for my very expensive medications. (Note I offered to continue paying the $100 a month premium but was told no, I couldn't, I would have to take the medications free of charge).

I received my notice of termination and as of Aug. 1, 2005 I will no longer have any medication coverage and will have to decide if I want to save my brain, heart or stop treatment on my sugar diabetes.

My medications will cost over $1,200 a month and even with my husband working and me getting $714.00 a month in SS we can't afford this each month. I do realize there are a lot more out there who are in much worse shape than I;m in, but this seems so unfair. It's a shame Im not young and pregnant I would still be on the roll with 100 percent coverage.

What can I do? Lack of management is what broke Tennessee, not the disabled .

Diane Simmons
- Thu, 21 Jul 2005

Re: Activists call 'New Urbanism' to account over lack of visitability by Eleanor Smith:

Eleanor Smith's vision of communities as wheelchair-accessible ranch-style low density homes is not one I'd care to live in. As for the day when I can no longer climb steps -- I'll take my chances. Personally, I'd like to see fewer communities where wheels overrule walking. I'm perfectly happy to see a certain percentage of housing wheelchair accessible, but I have no desire to live at street level. I like stairs for their visual appeal, their potential for exercise, and the view when one reaches the top of a set of them. Mandating that all homes meet the criteria of wheelchair access violates my right to live in a home I'd enjoy being in.

Donald Baxter
University Heights, IA
- Thu, 14 Jul 2005

Eleanor Smith replies:

Mr. Baxter read lines into my article about New Urbanism that weren't there and that don't reflect my view. Far from wanting to mandate one-story, low density homes, I like urban living and am enthusiastic about inner-city dense residences near public transportation. The visitability movement advocates for the zero-step entrance to be located wherever it makes sense topographically -- front, back, side, through the garage. For an example, see the Houses on Steep Terrain photo sheet on the Concrete Change website. At Glenwood Park, the houses with the looming front steps had zero-step entrances for the cars around back. But for human access, the developers blew off the two opportunities by putting steps into the houses from the garage and steps onto the back patio from the alley. New Urbanists and other designers must rise to the present-day challenge of creating homes that don't rely on steps for beauty, or (if desired) for a "traditional" look. Otherwise they will cause inevitable but needless collisions with current population needs and important civil rights and, in the process of repairing poor practices of the past, will leave their own socially negative legacy.

Re: Game On! by Ed Hooper:

Another movie about cripples playing wheelchair sports but unable to work full time, pay health insurance or compete against their walking counterparts.  Why not a movie about guys in chairs working in the real world in an intergrated work enviroment? Getting up at 6 every morning working 40 to 50 hours per week just like the able bodied guys. Now that is what is really tough!  This movie will reinforce the idea that all "cripples" can do is play sports against each other.

Randy Cummings
- Thu, 14 Jul 2005

Re: Activists call 'New Urbanism' to account over lack of visitability by Eleanor Smith:

There is an irony here. "New" Urbanism, as long as it clings to discrimination-by-design, has doomed itself to being behind the times.

As I read trade magazines for the construction industry I hear of aging Boomers' needs changing sales patterns for everything from heating and air conditioning to lighting. The industry is touting accessibility retrofits as a major income stream for the next 20 years in the US.

When I survey designers I find a growing interest in Universal Design - to the point where local conferences on the topic, like the one in Santa Cruz, CA this August, are attracting national participation. We are at the point where sterile and unimaginative application of ADA specifications have begun to give way to stylish integration of human-centered design. There are even awards for this (I know because my contractor wants to enter my bathroom in one!)

Working in the area of inclusive tourism and inclusive destination development (http://www.RollingRains.com) I see serious investment flowing into urban and non-urban development based on a sophisticated awareness of the market potential of seniors, children, and people with disabilities.

Visitability is the wave of the future. It has already surfaced as "Guestability" last year in Western Australia as a paradigm for the travel & hospitality industry. At the speed things are changing around them, New Ubanism's ideological rigidity is doing it harm. Fortunately, Universal Design has always avoided the error of substituting a design style for a design philosophy -- and kept people first.

Scott Rains
The Rolling Rains Report

- Tue, 12 Jul 2005

Re: Game On! by Ed Hooper:

My son Ryan Gilmer plays for the Pasadena Texans quad rugby team. Ryan was injured in 2003 playing against Texas A&M -- he was injured in a scrum playing rugby. His injury is C4-C5. We heard about quad rugby while we were still in the intensive care unit in Fort Worth. It immediately gave Ryan a goal, a dream, something to look forward to. He started training for rugby while he was still in intensive care. Now Ryan pushes around sand-filled buckets to improve his strength and speed. His goal is to someday be as good as Mark Zupan. It is great to have dreams and goals no matter who you are.

Ryan has had a remarkable recovery and an unbelievable amount of return. What is amazing is that Ryan does not want to have too much return, as he is afraid that he may be classified out of quad rugby. When he was able-bodied and played football, I don't think he had such a love for a sport. That is what is great about this game -- it gives hope to people who may have lost hope. It is the one crip sport that we ablebodied people truly would love to play.

I hope that many will see the movie Murderball -- it's a great story about a great game played by unbelievable athletes.

Randy Gilmer
- Tue, 12 Jul 2005

Re: Dangerous Times by Steve Drake

I didn't like Million Dollar Baby and don't ever want to see it again. Reading Steve Drake's review made some things clear to me that I felt about the movie but hadn't thought out. The review was right on.

Duane Hilton
Provo, UT
- Tue, 12 Jul 2005

Re: From 'mercy killing' to 'domestic violence': Shirley Harrison, the Chicago Media and Not Dead Yet by Steve Drake:

Mercy killing should be treated as murder. Older Americans are at risk due to local law enforcement officials not wanting to charge family members with murder. I was unfortunate to have my father become the victim of murder by lethal doses of morphine by two of his children. The Loudon County Sheriff's Dept. investigated the case and could find no criminal activity, stating " he was going to die anyway", and the D.A. agreed even after receiving lab results verifying that he was given 1800mg of morphine in a 72-hour period. He was given a lethal dose every 24 hours. Like Shirley Harrison, he was experiencing some anxiety and discomfort but was not suffering with severe pain, although he did have lung cancer.

If something is not done to stop this murder all senior citizens may have to face this same situation some day. What can be done to force local law officals to press charges for this crime?

I wrote to the AARP and received the statement "we do not have an official opinion on the subject of mercy killing." If AARP is not going to defend the rights of our senior citizens, then they are useless. I agree that Mr. Harrison should stand trial for murder and be punished accordingly.

Peggy Lane
Madisonville, TN
- Tue, 12 Jul 2005

Re: Defining Autistic Lives by Cal Montgomery:

Cal Montgomery's piece reinforced things I have learned in working with people on the "autism spectrum" and and from living life as long as I have.

I learned several lessons long ago. One is that no one can truly understand what it is like to be inside the skin of another. If our imagination and empathy are good, we may get into the ball park, but we can never really know what it is like for someone else. That has led me to be very reluctant to make any assumptions about what people want and what they are capable of. I am gennerally skepical of "experts" in any field, but in the disability field my knowledge of the history of the field makes me wonder why anyone ever listens to them. In real life, a disability diagnosis is almost meaningless in terms of telling you anything important about that person.

I have also learned that change is the only constant and the future is impossible to predict. My work in disability rights has made me constantly aware of my "temporarily able-bodied" status. I am continually amazed that most people see disability justice issues as something that will never affect their lives. We will all become disabled at some point, if we don't die first. I am also continually amazed that most people can't see the justice issues surrounding disability in this society.

I'm not sure I'm quoting it precisely and I can't cite the source, but I truly believe that "when one us is oppressed, none of us are free." I think it's oppressive to tell people what they want and need, rather than to ask them. That doesn't touch all the things that are done by force in the guise of "helping", but I think that is where it always begins. I think it is part of the essential nature of human beings to make choices and to try to communicate them. The "system" generally doesn't respect the choices of people with disabilities, and for people with autism it does very little to find ways to allow them to communicate. So, in my opinion, the "system" generally denies the essential humanity of the people it is supposed to serve.

Paul Phillips
- Thu, 7 Jul 2005

Re: Defining Autistic Lives by Cal Montgomery:

I found myself reading Cal Montgomery's excellent piece and saying, "Amen" throughout. I believe that she articulates many of the things I believe to be true about the ways in which our society labels, marginalizes, dismisses, and fails to learn from people with autism and other disabilities.

Everything I learned about this topic, and many others, I learned from my daughter, Rachel, who had autism, which made her wonderful, and epilepsy, which killed her just over a year ago at the age of 17.

Like most parents of newly diagnosed children, I spent many hours looking for a cure and trying to "normalize" my child's life. However, my brilliant, determined, gorgeous and delightful child had other ideas. She taught me -- stubborn, unintelligent, misinformed and reluctant me -- that there was nothing wrong with her. It was the rest of the world that was out of sync.

I watched people fall in love with my daughter, just as she was, despite their original beliefs about disability and its place in the world. After her death, some people who didn't know her opined that perhaps she would be "normal" in the afterlife, to which I replied "God, I hope not." I could not imagine her as any way other than she was. She was perfect in her "imperfections." The world is so much poorer for its loss.

Over the past year, I have slowly slipped farther away from the disability community, losing a source of support, connection and friendship. It is just too hard for me to be around all of those parents who have children with disabilities -- I am just so jealous! If I could leave parents with one message, it would be this: love your child as he or she is, concentrate on changing the world, not the child, and learn to become more like people with disabilities, instead of trying to make them like you. You will be a better person for it, and the world a better place. Rachel taught me that.

Michele Rowe
Dalmeny, Saskatchewan, Canada
- Thu, 7 Jul 2005

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