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---------------------------------------------------------------------- (28) Sat 2 Jan 93 10:41a Rcvd: Tue 5 Jan 2:15a By: David Jacobs To: Earl Appleby Re: Ny's grate job St: Rcvd ---------------------------------------------------------------------- This situation is unfair, unwise, and inhumane. State funds allocated for mental health purposes should have as their primary purpose the rehabilitation of those with a mental illness, not the "economic development" of job-starved upstate communities. Kenneth J, Dudek Executive Director Fountain House New York, NY Hi Kenneth: I live in Schenectady Ny. ( One of those Job Starved communities) I belong to Reach Out, which is a consumer operated newsletter. Also I am a member of the Advocacy Committee on Mental Health. We have found that the bigggest problem is public awareness also. Our Newsletter goes out monthly and someday soon I hope it will come out every 2 weeks. Recently we were show a bill admendment for the re-investment of mental health funds. This bill is designed to put money back into the mental health community that was once slated for psychiatric centers that are closed or will be closed. Up till now the money has been going into the State's general fund. I hope you and your organization are voicing your ideas on this bill. Hopefully it will go through because we ALL need that money. Best wishes David Jacobs Reach Out ... Speak kind words and you will hear wonderful echoes.... * Origin: Access BBS * Ballston Spa, NY * 518-885-4192 (1:267/136) ---------------------------------------------------------------------- (32) Wed 6 Jan 93 1:28a By: Earl Appleby To: David Jacobs Re: Ny's grate job St: Local ---------------------------------------------------------------------- David, Thanks for your informative response to ABLEnew's post of a letter-to-the-editor from-- Kenneth J, Dudek Executive Director Fountain House New York, NY I note you addressed it to Kenneth. Of course, since I posted the item in this conference, I (and our readers) had the pleasure of reading it. If you'd like me to forward it to him by mail, just let me know. I'd be glad, too. > Hi Kenneth: I live in Schenectady Ny. ( One of those Job Starved communities) I belong to Reach Out, which is a consumer operated newsletter. Also I am a member of the Advocacy Committee on Mental Health. We have found that the bigggest problem is public awareness also. Our Newsletter goes out monthly and someday soon I hope it will come out every 2 weeks. I'd love to see your newsletter sometime. If you could add us to the mailing list, it's: CURE, Ltd. 812 Stephen St. Berkeley Springs, WV 25411 > Recently we were show a bill admendment for the reinvestment of mental health funds. This bill is designed to put money back into the mental health community that was once slated for psychiatric centers that are closed or will be closed. Up till now the money has been going into the State's general fund. As I noted before, CURE doesn't believe in robbing Peter (institutionalized mental patients) to pay Paui (persons needing the services of community mental health centers). But to throw money earmarked for mental health into the pit of the general fund when there are more mentally ill persons on streets than in hospitals is unconscionable. > I hope you and your organization are voicing your ideas on this bill. Hopefully it will go through because we ALL need that money. I hope you get it. Please keep us posted on this bill, David, and thanks for your valued contribution to ABLEnews. Every success with Reach Out. Earl ABLEnews moderator * Origin: ABLEnews...counting on U for our s*ccess. (1:262/4) ---------------------------------------------------------------------- (93) Sat 9 Jan 93 1:15a Rcvd: Mon 11 Jan 10:36p By: David Jacobs To: Earl Appleby Re: Ny's grate job St: Rcvd ---------------------------------------------------------------------- On <01-06-93 01:28>, Earl Appleby said to David Jacobs about Ny's grate job. EA> David, Thanks for your informative response to ABLEnew's post of a letter-to-the-editor from-- Kenneth J, Dudek Executive Director Fountain House New York, NY EA> I note you addressed it to Kenneth. Of course, since I posted the item in this conference, I (and our readers) had the pleasure of reading it. If you'd like me to forward it to him by mail, just let me know. I'd be glad, too. I would be grateful if you would. thanx EA> I'd love to see your newsletter sometime. If you could add us to the mailing list, it's: CURE, Ltd. 812 Stephen St. Berkeley Springs, WV 25411 I will add you to the mailing list tonight. I'll see about getting you a copy of the Janury issue. It's a small newsletter but I am very proud to be a part of it and the other mental health consumers that work on it. EA> As I noted before, CURE doesn't believe in robbing Peter (institutionalized mental patients) to pay Paui (persons needing the services of community mental health centers). But to throw money earmarked for mental health into the pit of the general fund when there are more mentally ill persons on streets than in hospitals is unconscionable. I agree with you on this one. As New York begins closing the state institutions the former residents will need extensive help adjusting to the outside. If out-patient facilities are inadiquate, these people will flood the already understaffed hospitals and clinics. This will cause a lot of problems that include an already high percentage of mentally ill in jails and homeless shelters. New York State is putting a temporary band-aid on a wound that will soon be gushing in order to finance other pet-issues. It will be the mental health consumers who pay the ultimate price for it. EA> I hope you get it. Please keep us posted on this bill, David, and thanks for your valued contribution to ABLEnews. Every success with Reach Out. Thank you for making me feel welcome Earl. David ... "Milhouse, we live in the age of cooties!" - Bart Simpson * Origin: Access BBS * Ballston Spa, NY * 518-885-4192 (1:267/136) ----------------------------------------------------------------- Sun 3 Jan 93 4:48p By: Cal Howarth To: All Re: Do you need 'help'? ----------------------------------------------------------------- Do You Have an Advocacy Problem? Please take a few moments to complete the following quiz to determine whether you may indeed have an Advocacy Problem. Remember, the first step to recovery is acceptance of the idea that you may have an Advocacy Problem. Treatment programs are available if you find you need help and are ready to ask for it. 1. Do you ever do advocacy before noon? 2. Can you stop your advocacy without a struggle after one or two contacts? 3. Have you noticed an increased tolerance to advocacy? 4. Has anyone ever told you that you have mouth trouble? 5. Have you found yourself doing advocacy in unplanned ways? 6. Have you ever done advocacy at a social event and felt embarrassment over your behavior afterwards? 7. Do you work at protecting your supply of information and resources? 8. Do you sometimes do advocacy alone? 9. Do you usually do advocacy to get high? 10. Have you ever lost friends because of your advocacy? 11. Have you ever done advocacy first thing in the morning to steady your nerves, clear your head or relieve your worries? 12. Have you ever had severe shaking, heard voices, or seen things that weren't really there after doing heavy advocacy? If you answered "yes" to fewer than three of these questions, there is no doubt you have a serious Advocacy Problem -- NOT ENOUGH!! Adapted from the Rhode Island Developmental Disabilities Council newsletter. * Origin: Project Enable - Dunbar, WV (ADAnet 94:3040/1) (FidoNet 1:279/14) ---------------------------------------------------------------------- (48) Tue 5 Jan 93 10:55p By: Cindy Venuto To: All Re: This is great ---------------------------------------------------------------------- Re: Do you need 'help'? By: Cal Howarth #0 @1:102/481 FIDOnet Hi Cal I just had to tell you you caused me to chuckle and caused a big grin to surface across my face. Thanks!!! Cindy * Origin: Helping Hands (1:102/433.0) ---------------------------------------------------------------------- (58) Tue 5 Jan 93 6:28p By: Gordon Gillesby To: Cal Howarth Re: Do you need 'help'? ---------------------------------------------------------------------- CH> Do You Have an Advocacy Problem? CH> Please take a few moments to complete the following quiz to determine whether you may indeed have an Advocacy Problem. Remember, the first step to recovery is acceptance of the idea that you may have an Advocacy Ahhh . . . another gem from Cal Howarth! I'll be giggling for a week now and there'll be assorted snickers, snorts, groans and gaffaws around the DRA office tomorrow. Thanks Cal -- you do such a wonderful job of making sure I don't take myself too seriously.... - glg - * I tried to drown my problems but found they could swim! * Origin: DRAGnet - Disability Resources - (612) 753-1942 (1:282/1007) ---------------------------------------------------------------------- (12) Sat 4 Jan 92 1:22a By: Earl Appleby To: All Re: More MDA Malice St: Local ---------------------------------------------------------------------- [The following message is forwarded for your information from the Abled Arts conference in the hope you may find it of interest.] ===================================================================== BBS: Project Enable Date: 12-29-92 (14:33) Number: 347 From: GORDON GILLESBY Refer#: NONE To: ALL Recvd: NO Subj: ASK NICOLE Conf: (4) Abled Art --------------------------------------------------------------------- Dear Readers, In September I wrote a column sharing my memories as a Jerry Lewis Telethon Poster Child. After another publication called "The Disability Rag", printed my, article, I received the letter below from Robert Ross, Vice President and Executive Director of the MDA. I decided to share this letter from Mr. Ross an well as my response with you. Although I never thought well of the organization or its telethon, this response proved more outrageous than I had previously supposed they could be. -Nicole Dear Nicole: I've just seen Your "Poster Child Memories" letter in the November- December Disability Rag. As a result of the way you've structured this dreamlike creation the casual reader could get the impression that you were featured on the Labor Day Telethon with Jerry Lewis - which, of course, was not the case. Wherever you appeared and I assume it was on a local television station, I'm sure Jerry Lewis had nothing whatsoever to do with you directly. Your letter, it seems to me, is a disservice both to your mother and to MDA. I can hardly believe that anybody representing the Association or its Telethon would say the things you attributed to "the man." Nor can I conceive that your mother would permit you to be subjected to the kind of indignity you claim to have experienced. Whether or not the awful things you described actually happened as you said-- and I certainly doubt that --your letter plays right into the hands of those who have been so intent on damaging the Association. For shame! Sincerely, Robert Ross Senior Vice President & Executive Director Muscular Dystrophy Association In my article "Foster Child Memories" I shared my experience as the Wisconsin State Poster Child. I thought writing from this view point might help some people see the telethon controversy in a more human, emotional perspective, rather than as a relatively detached, political controversy. Needless to say, Mr. Ross didn't get it. He is so busy protecting his organization that he has lost his ability to be compassionate toward another human being. Obviously, the goal of his letter was to hurt my feelings. The only sense I make of the entire letter is that he wants to make me feel bad for not meeting Jerry Lewis, and for misleading the "casual" reader into thinking I had. The amazing part of this accusation is that never in my article did I even remotely claim to have met Jerry Lewis. I said that I was on "The Jerry Lewis Telethon"--which I have always assumed was what the show was called, especially since I had to wear a huge button with the words "JERRY LEWIS LABOR DAY TELETHON" circling Jerry's smiling face. His motivation in the second paragraph is simply to call me a liar, which is really the only way anyone could reasonably fight with my article. Either my experience is true or it isn't and clearly Robert Ross doesn't want it to be true and therefore he can't even conceive of the possibility; so that makes my a liar. In order to intensify my hurt feelings, he also scolds me on a deeper personal level by pointing out the "disservice" I have done to my mother. Damaging the MDA, in Ross' mind, is just as disgraceful as damaging my mother. In spite of all this, it was his final paragraph that was perhaps the most disturbing and indicative of his real attitude and the attitudes of those he represents. He not only repeats that I was a liar, but went further, attempting to shame me for speaking out against the organization. "For shame!" -- I was being a "bad kid". When I read this letter I first absorbed the incredible negativity he had intended for me. Looking up from the letter and taking one deep breath, I realized the true horror of what this man had done to me. Anger ended the shame. There is absolutely nothing respectable about Robert Ross, he has gone far below any lines of professionalism, making it perfectly clear that to the MDA, I am not just a person differing view point...I'm a bad child; a bad half-person. He finds it his job to shame me for my badness, his motivation being to injure me emotionally, as best he can. Before I received this letter, I thought the MDA was an organization who's basic intentions were good, even though they often manifest themselves quite negatively. With this as my basis, I wrote "Poster Child Memories" in an attempt to help the organization discover the terror they subject their poster children to, believing that if they understood how it felt to be a five year old used in this way, they would naturally want to stop. Where [are] the well intentioned human beings I imagined to be running this organization? Sincerely Exasperated, Nicole * Origin: ABLEnews...beyond the headlines. (1:262/4) ---------------------------------------------------------------------- (70) Fri 8 Jan 93 10:04a Rcvd: Mon 11 Jan 10:34p By: Paul Shankland To: Earl Appleby Re: More mda malice St: Rcvd ---------------------------------------------------------------------- Hello Earl, EA> [The following message is forwarded for your information from the Abled Arts conference in the hope you may find it of interest.] I just read the notes of Cole and Ross. It is clear that Ross, and possibly the MDA organization, is deeply shame based and consequently at risk of abusing any vulnerable person he/they contacts. The Ross letter is not unlike the communications that take place in cults. Joy Paul, Indianapolis * The results of IQ tests are always negative. * Origin: Project Enable - Dunbar, WV (ADAnet 94:3040/1) (FidoNet 1:279/14) ---------------------------------------------------------------------- (55) Tue 5 Jan 93 6:47p By: Rob Jacobsen To: All Re: ADA Alert ---------------------------------------------------------------------- * Message is Forwarded by Rob Jacobsen On 1:3403/4 * Originally to All On 1:2060/1 * Original message from area "OPMED_STORE" * Message originally created at 1:2060/1 * Original Area : (ECHO) DWARFISM Dept. of Transportation Proposes to Weaken ADA Regulations: Standees Could Lose The Right To Use Lifts From the Consortium for Citizens with Disabilities for more info, contact Marilyn Golden, Disability Rights Education & Defense Fund, (510)644-2555 Your letters are urgently needed by Jan. 19, 1993 informing the federal Dept. of Transportation (DOT) that a proposed change in their Americans with Disabilities Act regulations senselessly removes the right of many Americans with disabilities to use public transportation. One of the ADA's most important transportation provisions was that mobility impaired ambulatory persons (such as persons using walkers, crutches, or canes, or who use no mobility device but have difficulty walking, sometimes called "standees") must be allowed to use the lift to board a bus if they need or prefer to do so. On Nov. 17, DOT published a proposal to change its ADA regulations such that transit agencies would only be required to allow standees to use lifts if the lift has a hanrail, or if the lift complies with the new ADA technical standards. Many buses on the road today have lifts, but most of them do not have comply with the ADA's tough new standards, and many have no handrails. The result is that many standees' right to ride the bus will be delayed for years until the buses wear out and are replaced by new ones. The only reason for DOT's sweeping proposal is concern for the safety of the standees, but there has been no documentation or even anectodal evidence of any threat to safety -- in fact, in many cities, standees routinely use lifts with no problem whatsoever. It is crucial that unfounded allegations of a safety risk not be allowed to create policy. Most importantly, since DOT has now raised this issue for public comment, letters from the disability community are urgently necessary to counteract the many letters from the transit industry urging DOT to make the regulation even more restrictive than what is proposed. Federal agencies should preserve and protect the ADA rather than weaken and dilute it! We hope that you and other disability rights supporters write letters to DOT in large numbers, encouraging DOT to maintain the requirement allowing standees to use any lift. Send your letters to: Docket Clerk Docket No. 48463 Department of Transportation 400 - 7th St. S. W. Room 4107 Washington, D.C. 20590 * Origin: Rob's ADAnet Wreck Room, Longview, WA 206-636-0276 (1:3403/4) ---------------------------------------------------------------------- (82) Fri 8 Jan 93 2:06p By: Gordon Gillesby To: All Re: MENTAL HEALTH ADVOCATE OB ---------------------------------------------------------------------- - - - - - Rosemary Dybwad, Champion of Self-Advocacy, Dies The world has lost a friend, Rosemary Ferguson Dybwad. Rosemary, wife of Gunnar, died of cancer on November 3, 1992, at her home in Wellesley, Massachusetts. She was 82 years young. Her official title was senior research associate at the Heller Graduate School at Brandeis University. Her unofficial title, as bestowed by Robert Perske, was "International Network Leader." Rosemary was born in Howe, Indiana. She graduated from the Western College for Women in Oxford, Ohio, in 1931, and then became an exchange fellow at the University of Leipzig from 1931 to 1933; where she met Gunnar and married him in 1934. Her early work dealt with women's prisons and juvenile delinquency, but beginning in 1958, she worked exclusively in the field of mental retardation. From 1964-1967, Rosemary and Gunnar directed the mental retardation project of the International Union of Child Welfare in Geneva, Switzerland, which was the beginning of their journeys to most countries throughout the world. From 1966 to 1978, she served as a board member and later first vice president of the International League of Societies for Persons with Mental Handicaps. Her greatest contribution at the international level was collecting, editing, and publishing of The International Directory of Mental Retardation Resources, U.S. Department of Health and Human Services (1971, 1979, and 1989). It was her work on the international scene that inspired the creation of the Rosemary F. Dybwad International Awards, a program begun in 1963 by The Arc. A collection of her speeches and writings was recently published in Perspectives on a Parent Movement: The Revolt of Parents of Children with Intellectual Limitations, published by Brookline Books, 1990. Her thoughts preceded what we now know of today as "self-advocacy," "parent- to-parent efforts," "parent-professional partnerships," "supported employment," "transition from school to work," and "age-appropriate activities." Her frequent observation about early intervention was, "Why does it come so late?" Or, about people with mental retardation-- that they are NOT "children forever!" There are many fond memories of Rosemary. Some will remember her with the placard at Belchertown that said "Don't think that we don't think!" Others, like Bob Perske, will remember his observation: "Believe it or not, Gunnar's office was tidy! Not so with Rosemary's." Perske then related how Boston Today Journalist, Steve McFadden described her office in 1978: Her office is a quagmire of data. The chairs are smothered in studies, and the walls fairly groan from the accumulated weight of a total bookcase environment. She sits before burly heaps of printed matter, literally walled in by towering stacks of information from around the world. She labors placidly, her blue eyes taciturn pools of understanding as she imperturbably scans another document. Then, there's the intense memory of those who attended her presentation at the close of the four-state self-advocacy conference in Stamford, Connecticut. Dr. Rosemary Dybwad at Belchertown Common during a protest march on behalf of the Coalition for Community Living in 1984. In 1988, as described by Robert Perske: The self-advocates and their helpers became wide-eyed and quiet as they listened to her soft, sincere voice. They understood every word she said. They listened as if they had been slaves about to receive freedom papers. And they loved her for what she said. In special tribute to her life, the Rosemary Ferguson Dybwad International Fellowship Trust has been established. Contact: The Rosemary F. Dybwad International Fellowship Trust, Inc., 18113 Town Center Drive, Olney, Maryland 20832. 301/598-3568. - - - - END ARTICLE - - - - This article is a reprint from FUTURITY NEWSLETTER. Editorial content may be reprinted with attribution to Futurity Newsletter. Letters and editorial submissions are welcome. For more information or to submit material for publication, contact: Roger Strand Governor's Planning Council on Develomental Disabilities Minnesota Department of Administration 300 Centennial Building 658 Cedar Street St. Paul, MN 55155 612/296-9963 * Regardless of what you may think, this is NOT a tagline. * Origin: DRAGnet - Disability Resources - (612) 753-1942 (1:282/1007)