wtm@decvax.dec.com (Bill McGarry) (02/28/90)
THE HANDICAP DIGEST Issue # 1119 Wednesday, February 28, 1990 Today's Topics: ****** Re: A NEW CANE Book publishing (after the writing) Profiteering from DISABILITY Re: CAN-DO Re: CP RELATIONSHIPS Re: Mac SE or AT ? Stay home, or get a job? Re: TERMS CONTINUED Head Injury Council of Australia USA CFIDS/CFS BBS - Mass. ****** To subscribe to the Handicap Digest mailing list or have your thoughts in the next issue, please send electronic mail to Bill McGarry at any of the following addresses: UUCP: {oliveb, philabs, decvax, yale}!bunker!wtm INTERNET: wtm!bunker.uucp l-hcap@vm1.nodak.edu BITNET: l-hcap@ndsuvm1.bitnet Fidonet: The Handicap News BBS (141/420) 1-203-337-1607 (300/1200/2400 baud, 24 hours) Compuserve: 73170,1064 Bill McGarry (Moderator) (203) 337-1518 ------ Subject: Re: A NEW CANE Written by: Greg.See-Kee@p0.f404.n714.z3.fidonet.org (Greg See-Kee) Organization: FidoNet node 3:714/404.0 V*> Yes, that is the one thing I liked best about my aluminum cane, V*> being able to fold it up and put it in my purse or just set it in V*> my lap. If I need to carry a parcel, I fold me cane, put it into the parcel, and stagger along without the cane, but carrying the parcel. I used a glue gun to make the handle of the walking stick less slippery. If it is leaning against a wall (while adjusting my dress, digging into my wallet, etc), it doesn't so easy slip onto the floor. Putting my name and phone number was done with Dymo Self-adhesive labelling tape, onto the barrel of the sick. Oh, yes, the phone number (for you ever so wealthy people! Voice 61 - 2 - 662 6953. -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!3!714!404.0!Greg.See-Kee Internet: Greg.See-Kee@p0.f404.n714.z3.fidonet.org ------ Subject: Book publishing (after the writing) Written by: Greg.See-Kee@p0.f404.n714.z3.fidonet.org (Greg See-Kee) Organization: FidoNet node 3:714/404.0 JC> Getting it published is the hard part My book is currently called "HOW TO BE HANDICAPPED. Sexism, Racism, Disabilityism, ..." I used to be a writer/ editor/ publisher of newsletters & magazines. I assumed that almost any well-written document would be published. The Topic" and writing style would need to be well considered and wisely selected. Am I wrong in my assumption about getting a publisher for a BOOK? -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!3!714!404.0!Greg.See-Kee Internet: Greg.See-Kee@p0.f404.n714.z3.fidonet.org ------ Subject: Profiteering from DISABILITY Written by: Greg.See-Kee@p0.f404.n714.z3.fidonet.org (Greg See-Kee) Organization: FidoNet node 3:714/404.0 RR> When I want to talk to groups about accessible housing, etc., RR> they look RR> at me with disdain as if to say that the profit motive is somehow RR> inappropriate in that environment. In Australia, I represent disabled people for our national version of the International Standards Organizations - those people who worry about ASCII, ANSI, etc. Many of my fellow committee members also try to dismiss me that way. So I ATTACK! "DISABILITY IS the world's biggest growth industry. Everyone is this room is going to be disabled. You have NO CHOICE! If you aren't disabled now, you eventually will be. You will need reading glasses one day. You will have to ask a big strong person the lift something, because you are not so capable. "The biggest cause of Disability is the process of ageing. Who in this room is going to commit suicide soon ?? That leaves the rest of you -- amongst the disabled people will be you!" -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!3!714!404.0!Greg.See-Kee Internet: Greg.See-Kee@p0.f404.n714.z3.fidonet.org ------ Subject: Re: CAN-DO Written by: Greg.See-Kee@p0.f404.n714.z3.fidonet.org (Greg See-Kee) Organization: FidoNet node 3:714/404.0 J> I was reading your message about showing 10 devices to the newly J> disabled group. I know you may not have originally used to word "devices". GADGETS is a far more appropriate word. J> I was wondering if you heard anything about a companion dog Yes this is a DEVICE. Other devices are: new friends, job/recreation/hobbies. Partner/ spouse. Fidonet DisAbled Conferencing, Disability organizations, solitary sex, ab/use of the medical drugs and/ or professional carers. When talking about professional carers -- they may or may not be trained/ code-of-ethics bound, disciplined. But they see that being a do-gooder is their major vocation. Before my own brain injury (motor vehicle accident), I defined myself as a professional do-gooder. Some of my causes were Feminism, Druggies, Homeless youth, crazies, quads, paras, retards, vision-impaired, and the men's auxilaries to the Women's Liberation Movement in Australia's two largest cities. Five years after the fourth most disabling thing that could ever happen to anyone, I'm still coming to terms with the new "me". BTW: The most disabling events are (1) Persistent, acute pain (2) Persistent, acute dizziness (3) Tinnitus (4) Brain Damage (5) ... ( ) Quadriplegia I'm interested in your "Hit Parades". (1), (2) & (3) are in agreement with the Australian Tinnitus Association. Brain damage, which I have, has multiple causes: 1) natural senility (premature or otherwise) 2) the birth process 3) drug abuse/ reactions, including alcohol 4) physical impact (as with me) 5) stroke 6) oxygen starvation (eg drowning, coma, ...) 7) ... 8) schizophrenia ? 9) other organic brain disorders ? Unlike mere spinal cord damage (paras & quads), or damage to the peripheral nervous system [PNS] (hearing, vision, digestion, limbs, ...), brain damage affects the total human body. In military terms, if you eliminate headquarters, you do the most damage. So in my case, it not only affects my PNS (hearing, vision, gigestion, limbs, etc), but also other important Brain-Only functions. These Brain-Only functions include: 1) Logic systems ("insight") 2) Memory systems, esp short term memory 3) Muscular Multi-processing (eg listening, swallowing) 4) Input multi-processing (eg listening & seeing) 5) Cognitive multi-processing (eg thinking/ emoting) Often termed "emotional disinhibition". 6) Output multi-processing (eg walking & talking) The other determinant of the seriousness of a medical disability, is the level of civilization around the disabled person. So if the society relies on "blue-collar" muscular-type work, then spinal cord and limb-disabilities are very critical. However if a society has the physical and social mechanisms to provide prostheses (artificial parts), then access to these physical & social mechanisms becomes much more important. With Brain Damage, a person (myself included) becomes unable to fully access the physical and social prosthesis that advanced societies provide. To put it in "street language", crips like me are so bitchy and unreliable that no-one likes being near us too long. Most of the brain damaged people are living on the streets, in "overnight refuges" or just dumped into nursing homes. The science & technology has not YET evolved to the level that it knows how to handle brain damage. Our society doen't even know how it is caused! -- END OF SERMON -- <grin> Comments, questions, arguments ... please ... -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!3!714!404.0!Greg.See-Kee Internet: Greg.See-Kee@p0.f404.n714.z3.fidonet.org ------ Subject: Re: CP RELATIONSHIPS Written by: Greg.See-Kee@p0.f404.n714.z3.fidonet.org (Greg See-Kee) Organization: FidoNet node 3:714/404.0 J> It depends on his personality on how J> well he is liked. At least that's what I keep telling my son who J> has C.P. Agreed. In the 5 years before my own accident, I worked with the Australian Quadriplegic Association (AQA) As a "replacement" for the arms & legs of a man (muscular atrophy) and a woman (CP), I helped them experience their first double bed, their marriage, their parenthood to two teenage children (from her previous marriage to a bus driver working at the Spastic Centre of NSW), and their adjustment in living arragements. When I met them, they each had single beds in a nursing home, and were unemployed. AQA then gave them their first "proper" (not sheltered) jobs. After the nursing home, came the AQA shared-house, then there own rented house, then their own purchased house. Other contributing factors: strong support from their upper-middle class families, very skilled staff at AQA (myself included), International Year for Disabled Persons, plus fairly high natural intelligence, especially in the man. Which goes to support my observation -- advanced post-industrial societies value people for their number one asset. That asset is not just immitating the robots and machinery that we now have. Our No. 1 Asset is the natural intelligence. With this intelligence, we can them work smoothly, coordinating the robots & machinery around us. As Japan is now showing the world, the path to national wealth is the ability to work smoothly & cooperatively with other people. Be sensitive to their needs, their tastes. Go out of your way to conform to THEIR ways of operating in the world. PEOPLE SKILLS are the No.1 Asset. Whatever you do, though, don't give yourself brain damage. Even with temporary brain damage (induced very easily with alcohol), you will be doing things to ruin the relationships with your environment. You might not remember it at the time, but your brain damage also damaged your environment. ps: I now have permanent brain damage. -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!3!714!404.0!Greg.See-Kee Internet: Greg.See-Kee@p0.f404.n714.z3.fidonet.org ------ Subject: Re: Mac SE or AT ? Written by: Greg.See-Kee@p0.f404.n714.z3.fidonet.org (Greg See-Kee) Organization: FidoNet node 3:714/404.0 JO> impressed with her Mac SE. I will go so far as saying it is JO> probably JO> a better choice for her (and many others) than an AT clone like JO> mine would be. At the Australian Quadriplegic Association, they've bought so many MACs. I set up a few ATs for their admin sections, and used Norton Commander. With the "NCS" menu systems that they have developed, in my opinion they are better off than with the MACs. Flexible & pwerful menus can literally mean: "SHHOT!" But on the MAC, the quadriplegic man/ woman has to POINT first. I dare anyone to say that POINTing with a mouthstick /trackball is better than SHOOTing your mouthstick at one of the buttons on a keyboard. MACs are for preschool children who have trouble knowing their ABC's. If you can read, try a menu system, and SHOOT! Quadriplics don't have to POINT before they SHOOT. And they should not be forced to, either. Comments & arguments please. Because when I express viewpoints similar to the above in other places, I want to be convincing, well considered and very persuasive. -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!3!714!404.0!Greg.See-Kee Internet: Greg.See-Kee@p0.f404.n714.z3.fidonet.org ------ Subject: Stay home, or get a job? Written by: Greg.See-Kee@p0.f404.n714.z3.fidonet.org (Greg See-Kee) Organization: FidoNet node 3:714/404.0 RM> they seem to prefer that a RM> disabled person stay home and watch TV, rather than make the RM> effort to educate themselves and go out for a job. Because of my insurance lump sum, I don't have to go out and get a job. But I find it so lonely sitting/ lying, all isolated in my bedroom... My room is better euipped than average. Several computers with impressive statistics, including a few modems, CD ROM drive, dot matrix, daisywheel & laser printer (just one of each). HIFI with CD music, TV, loudspeaker phone -- all remote, cordless controls. But if I had the emotional stability, I want to go to work. I don't need the money. What work used to give me was a sense of being ALIVE. There were people I could interact with: talk, play, argue, grumble with, flirt, tease, teamwork, boss, be-bossed, ... Unlike some people, I'm like my cat -- I'm a social animal. Unlike some robots, I have a babyhood, a childhood, and my teen years -- being with people. And when I'm work them, life was so interesting. There were gossip sessions, hints, tricks, how-to sessions, challenges. In teamwork, we have the team satisfaction of failing or succeeding to meet certain goals. We had shared triumphs andshared failures. I wish I didn'y have brain damage. I tell you what. I'll give all my money and all my emotional bitchiness, in return for your gadgets, your personal staff members and you ability to stay in the same room as another person without them leaving the room because of the bitchiness. Anyone want to trade with me? If you have constant pain, constant dizzyness or tinnitus - you can keep it. I won't trade with you. -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!3!714!404.0!Greg.See-Kee Internet: Greg.See-Kee@p0.f404.n714.z3.fidonet.org ------ Subject: Re: TERMS CONTINUED Written by: Greg.See-Kee@p0.f404.n714.z3.fidonet.org (Greg See-Kee) Organization: FidoNet node 3:714/404.0 V*> talking about labels that hurt, devide, emphasize negatives, then V*> I am dead against your position and contention concerning the V*> lack of importance of terminology and behaviour. I think you are V*> very wrong. Some of the "New Age" practitioners say: "Who is HURT? Who causes the HURT? If it's not them, then it must be YOU!!" The flaw in this "New Age" BLAMING either of two causes, they are ignoring a third cause: the existence of Social Psychology, Sociology and Politics. (all very new Sciences - see my discussions in the Fidonet Science conference). I think New Age people are SOCIO-ILLITERATE. As well, many political activists are PSYCHO-ILLITERATE, and many drug-prescribers are SOMATO-ILLITERATE. But returning to the topic: HURT & BLAME ------------ Most of us are SOCIO-LITERATE. We can "read" (sense & understand) our social environments. For instance, most women in Australian cities are socio-literate enough to know that if they walk the city-streets alone at night, they will probably attract abuse and unwanted attention (verbal or physical). So the experience of HURT is not necessarily in YOU nor ME. It could also be in our ENVIRONMENT. Because we have intelligence, we can sense and understand ENVIRONMENTAL HURT before it happens, and during and after it ever happens. This kind of INTELLECTUAL HURT is not caused by you nor me. Because we have intellectual structures around us, it is those intellectual structures that do the hurting sensation for us. For example, remember how it hurt when you last fell down. Now do you fell hurt if I am about to make you fall down again. This Intellectual Hurt uses SOFTWARE devices which have a parallel existence with actual HARDWARE devices. The Intellectual Environment is the "software" representation of the real hardware environment. We imagine/ remember the incident. We hurt from the incident. If and when it happens to the us physically, we also hurt from the incident. Somehow, Albert Ellis described it when he invented "RATIONAL-EMOTIVE THERAPY" [many books of the same or similar names]. Treatment for INTELLECTUAL HURT should not just be that used by the New Age people. Rather than ignoring the Intellectual Environment by just blaming YOU or ME, we can treat this "software" representations of the real hardware environment. There are several ways. Rational Emotive is just one way. If you are interested further, please respond with your opinions, experiences, arguements, etc. Closely linked with the treatment of HURT, is my study of the GRIEF/ BEREAVEMENT. -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!3!714!404.0!Greg.See-Kee Internet: Greg.See-Kee@p0.f404.n714.z3.fidonet.org ------ Subject: Head Injury Council of Australia Written by: Greg.See-Kee@p0.f404.n714.z3.fidonet.org (Greg See-Kee) Organization: FidoNet node 3:714/404.0 Went to the formation meeting, 4 years ago. * * More news/gossip about that if you ask... But last night, went to the Conference dinner. It was held in my city, the biggest in Australia. HICOA bused me from and returned me home. I could have driven my (absolutely new) car *. But the nature of my disability - BRAIN DAMAGE - makes me like the standard drunken driver * Had a spendid flirtation with another charming woman - she is able three times more head injured than me. I am about twice as head injured as a normal person who has a social glass of alcoholic drink * Unfortunately Susanne & I were very different. I was more like her father. She 28, me - 40 years old! Her dad was Lecturer in Education at a nearby university. But my musical tastes were neither hers nor her father's tastes. Interestingly, her pituitary gland (she didn't know the medical side) had been damage. Susanne understood it as "I don't have my periods any more". * At my dinner table sat 2 of the top brain-damage medical practritioners in Australia. Dr John Dixon didn't disagree with my points: 1) Brain Damage is part of normalcy eg drinking alcohol, & gerontocratic politicians. 2) Research is well underway on the peripheral nervous system, but we don't know much about the CNS (Central Nervous System, which includes the brain. 3) Treatment for medical disorders reflects the level of understanding that we have on whatever medical disorder is researched. 4) All brain injured people have more in common with each other, no matter how they received their disability, than they have in their differences. 5) Because Brain Damage is relatively "invisible", it receives low priority by the community, the legal practitioners, academics, researchers, and governments. 6) My racial minority status (Australian-born Chinese - ABC) is far bigger handicap to me than any medical disability * 7) ... * * more gossip/discussion on these points, if you seem interested ... -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!3!714!404.0!Greg.See-Kee Internet: Greg.See-Kee@p0.f404.n714.z3.fidonet.org ------ Subject: USA CFIDS/CFS BBS - Mass. Written by: John.Kossowan@f1039.n261.z1.fidonet.org (John Kossowan) Organization: FidoNet node 1:261/1039 - Maryland Med-SIG, Baltimore MD There is a Medical Information BBS dedicated to providing information on the disease called myalgic encephalomyelitis ,also called chronic fatigue syndrome,or chronic fatigue immune dysfuntion syndrome.The Centers for Disease Control currently calls the illness Chronic Fatigue Sybnrome. The illness mimicks most of the symptoms of polio myelitis,but does not produce permament paralysis. The USA CFIDS/CFS BBS is at 508-468-7750,8/n/1; 300/1200/2400; hours: Friday 8 pm to midnight;Saturday 11 am to midnight, and Sunday 11 am to 8 pm; lists of med articles,physician referral lists and national info groups for patients are listed.This is an illness that has received a lot of press in the last few years,namely because it has been spreading ,has affected all age groups,has hit health professionals particularly hard,among other professions as well. The etiology is currently unknown. The C.D.C. started in Oct.'89 a four city study on the numbers:Atlanta,Reno,Grand Rapids,and Wichita. This is presently considered one of the mahjor epidemics now in the U.S.,Canada and Europe. A conference in L.A. was heavily attended Feb.26th where over 30 specialists presented findings.A Dr.Beam of Scotland,had documented evidence of isolating an enterovirus that may be the cause. Research grants are being given by NIH to look into the cause,involving theNat'l Center for Immunology in Colorado. For more info,call into the CFIDS/CFS BBS. March 4th to 11th is CFS awareness week.This is sponsored by Governor Perpich of Minnesota. Thanks for your attention ! John F.Kossowan D.D.S., sysop of the USA CFIDS/CFS BBS -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!261!1039!John.Kossowan Internet: John.Kossowan@f1039.n261.z1.fidonet.org ------ ****** End of Issue # 1119 of the Handicap Digest ******