[ 25 September 2005: Message edited by: blackadder ]

I have a bit of experience coping with chronic illness -- not my own, but I have been caring for my husband, who has Alzheimer's/dementia. It has helped me a lot to talk with people who live with other kinds of chronic illness. I know two young women with MS, for instance, and their thoughts, or in one case the experience of the woman's mother, who is an old friend, have taught me a great deal about living one day at a time, about trying, at one and the same time, not to overinterpret but not to underinterpret either.

[ 26 September 2005: Message edited by: blackadder ]

I'm sort of a newbie to the whole thing: four years ago (when I was 36), my MS turned rather caustic and sent me into seizures. The result was moderate brain damage plus dementia that comes and goes.

The biggest issue I have regards people with whom I was very close before my big brain scramble who have become so uncomfortable with the changes that, well, they're now 'people I used to know.'

WTF is the matter with people?

[ 26 September 2005: Message edited by: Tape_342 ]

Early on, eg, some people started talking about Thorfinn in the third person in front of him -- at a time when he could fully grasp what they were saying and what was happening. I would try to redirect the discussion back through him, but some people just could not do it, y'know? They just couldn't.

My one dissapointment is, at least in the amputee world, a definite lack of political will to change things for the better. It seems many amputees see competing at the Paralympics as the ultimate goal in life [in reference to overcoming ones physical limitations].

I'm just glad my two time Paralympic experience inspired me to ask questions rather than believe everything I was told by the so called "people who know better". It was my experience at the Paralympics that taught me that incompetence is hidden in the least obvious of places; thus inspiring my entry in the politcal realm....

There are many common inter-disability issues that could be discussed in a general forum, one of interest would be the involvement of pwd in the political realm.

The Amputee Web Site

[ 26 September 2005: Message edited by: rockerbiff ]

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Isn't it odd how the Internet is so well-populated by disabled people-- yet there's not much talk about the subject?

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Yep.

There is a City of Toronto survey/consultation around recreation happening as we type. Link.

Maybe there needs to be an explicit disability forum on babble. While "body and soul" are great, it's a bit loose for those of us that very focusssed on disability issues.

On the more activisty front:

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On September 29th people from across Ontario will WALK,WHEEL,AND RIDE FOR DIGNITY to Queen ’s Park.

 
11:30 am
Community Lunch

 
12 -1 pm
Rally and Entertainment

 
For information or to volunteer call (416)441-3714 or email at [email protected]

 
Organized by the Ontario Coalition for Social Justice,the Ontario Needs a Raise Campaign and the Peterborough Coalition for Social Justice.Financial support provided by the CAW,CLC,CUPE Ontario,OFL,OPSEU,OSSTF and the Steelworkers. (North of College and University)

 

THE ROAD TO DIGNITY

The Ontario Coalition for Social Justice (OCSJ) would like to welcome individuals, groups and institutions across Ontario to become involved in an exciting, peaceful mobilization to urge an increase in social benefit rates, an end to the claw-back of the national child benefit, and an increase in safe, affordable housing.

Poverty hurts us all. The goal of "healthy people, healthy communities" can never be achieved while one in five children across the province of Ontario lives in poverty. Many children are malnourished and in need of dental care. Many parents constantly fear that one emergency expense may result in homelessness for their families.

The Walk, Wheel, Ride for Dignity (WWRD) -- a component of the Ontario Needs a Raise Campaign -- is designed to take to Queen's Park the message that it is essential to increase Ontario Disability Support (ODSP), Ontario Works (OW) and minimum wage rates, ending the provincial claw-back of the national child benefit and increasing access to safe, affordable housing to give all the people of this wealthy province a living income. The event takes place on September 29th, 2005. Success will depend on a large commitment from many people and organizations.

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Originally posted by blake 3:17:
walk-wheel-ride-for-dignity

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Originally posted by skdadl:
Tape, as you know, I have struggled with other people's reactions a lot too ... sometimes, I was glad to see the people who couldn't cope draw back, actually.

Early on, eg, some people started talking about Thorfinn in the third person in front of him -- at a time when he could fully grasp what they were saying and what was happening. ... After one of those first visits, Thorfinn turned to me and said, "They think I'm an idiot, don't they."

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That's a big problem, sometimes even the biggest problem -- other people not knowing what to say or do.

Cerebral palsy (CP), for example, can be a "visible" disability in that it affects balance and speech, but people can't necessarily tell that a person who's walking or speaking differently is doing so because of CP. Or they may know the term "CP", but not know what it means, not know whether it's a mental disability or a physical / physiological disability (my understanding is that it's the latter, although I know it can have different degrees of severity).

And so people often avoid speaking to a person with a disability because they don't know what to say to that person. I have a relatively minor disability that doesn't have a major effect on what I can do, but I'm always wondering whether it affects how people perceive me, how they talk to me, perhaps even whether they talk to me. (This is also bound up with my own considerable shyness and anxiety in social situations, as I've discussed in a thread on that topic.)

This problem also happens in other circumstances, like where a relative / spouse / friend is ill or dying or has died, all the more so if it happens unexpectedly or while someone's still quite young, that people who aren't directly affected and who don't have similar experiences are at a loss for what to say or do (which has also been discussed on a Babble thread).

As you point out, skdadl, there's an overlap between this kind of situation and a situation where people have a disability. I experienced a combination of the two when my mother died several years ago. First she lost her cognitive abilities, and I could see her struggling with the awareness of that, while I felt at a complete loss about how to interact with her. Then, after she died, my two closest friends and I drifted away from each other, at least partly because of the awkwardness of talking about what had happened with people who had no similar experiences. For me anyway, that was more of a temporary situation, although it still generates some awkwardness in talking to people about my family.

So in all of these circumstances, education is important -- teaching people who don't have direct experience with a condition what that condition involves. This works two ways -- some people need to be prepared to learn, others need to be prepared to teach.

I'm lucky to have had the benefit of being in two worlds, in a sense, as a person who is more or less able-bodied but who because of his minor disability has met a range of people and heard from people with other disabilities how they navigate the world and the obstacles they face, including the ways that others perceive them. This included a job at a disability resource centre, where I met blackadder as well as another mutual friend.

And of course the most important thing (perhaps so obvious that it shouldn't have to be said, but sometimes it still has to be said) is that people with disabilities are PEOPLE first and foremost. Some of them people with an encyclopedic collection and knowledge of rock music and British comedy.

[ 26 September 2005: Message edited by: obscurantist ]

And I think it's important what you say about the teachin' and the learnin'. Because most of what I know comes from personal experience, I've kept feeling that I gotta research, I gotta research before I open my mouth about anything -- I just assumed that I didn't have that much to say. And it has been valuable to me to do some research -- I don't mean to dissuade people from disciplining their personal experience with as much research as they can find.

But I slowly came to realize just how much I do know, partly because so little has been popularized widely among us. About many major illnesses and chronic conditions, people know almost nothing -- until it hits them or someone close. And about the immense practical difficulties, financial, legal, bureaucratic difficulties that we encounter, that sometimes crush people with disabilities -- again, most of us know nothing until suddenly -- it's us.

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I can't tell from the notice: are we just supposed to go to Queen's Park? We're not assembling somewhere else and walk/wheel/riding there?

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Originally posted by audra trower williams:
Would anyone like to offer to co-moderate a disabilities issues forum?

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I've been severely hearing and slightly speech disabled since birth, in addition to being born with one rare, horseshoe-shaped kidney. All these experiences pushed me to work harder than most around me, and to succeed at whatever I chose to do in life. A bit ironic that I chose a career with a huge amount of public speaking and involvement in public forums. I had a stroke in 2002 which resulted in an irregular heartbeat, and made one of my disabilities (hearing) slightly worse. I then retired on long term disability on the advice of my physician, at age 53.

[ 27 September 2005: Message edited by: Boom Boom ]

One thing I am curious to learn more about, as a model for better support and/or caregiving in general: the new, so-called intensive therapy for autism, which I've learned about only from the outside, through reading about legal challenges for its funding.

Does anyone here know in detail what the autism therapists have developed?

Basically Prader-Willi is a missing chromosome which results in a variety of challenges, including: developmental delays, lack of full sexual development, no sensation of fullness when eating which results in obesity, lack of muscle tone, problems with balance, and short stature.

Children born with Prader-Willi have no appetite initially and lack muscle tone and in our wonderful modern medical world are then subjected, less than a week old, to spinal taps and all sorts of tests, which result in no answers because the answers only come through genetic testing.

Until she was two years old we had no diagnosis although it was clear to us that she was different. When she was small she was the funniest, cuddliest little being, and now that she is older she is all that and more. She adores animals and they her, she takes dance classes, she reads and studies for hours with determination, loves card games, has a fantastic memory and is adorable. And. She is old enough and smart enough now to know that she is different and that she doesn’t have friends in the same way others have friends. I see that as she grows toward independence, and she wants that, her vulnerability in a society that values “perfection” and that fears “imperfection” becoming a harsh reality for her.

I see our fear of those who are different as a hindrance to our development of a healthy society. I also see a real arrogance on our part when we assume that we have the answers and that those who are different are less capable of contributing.

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Originally posted by blackadder:
I am a 28 year old male who has Cerebral Palsy living in Vancouver Canada just wanted to start this topic and invite anyone with Cerebral Palsy or who knows anyone with Cerebral Palsy to share there expeiences and just want to hear from others with Cerebral Palsy

[ 25 September 2005: Message edited by: blackadder ]

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Hi I have too cerebral palsy (slight) and have what is thought to be 'ticks' which is involuntary movements. Or to put it simply, I jump in fright terms whenever something unexpected happens. The jumpiness is really just like any human being getting a fright but with me it happens in everyday life, abnormally. Do you experience this or know of anyone who has and how to go about either stopping it or minimising it ?

[ 02 October 2005: Message edited by: saltandpepper ]

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Originally posted by skdadl:
One thing I am curious to learn more about, as a model for better support and/or caregiving in general: the new, so-called intensive therapy for autism, which I've learned about only from the outside, through reading about legal challenges for its funding.

Does anyone here know in detail what the autism therapists have developed?

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I can help a little with that. I think you are talking about ABA-based therapies, such as Lovaas. ABA is Applied Behavior Analysis. It is not a new discipline, but its applications to autism are relatively new.

It doesn't really seem groundbreaking at first glance. The basic principle is an intensive, specialized, individual program of therapy that includes behavior management. Reinforcement is used to change behavior. Generally there's an emphasis on positive reinforcement, rather than punishment or averse stimuli. In the case of children with autism, the behaviors encouraged at first are basic social, educational, and communicative skills. This is stepped up to encompass more complex behaviors until (ideally) the child is able to interact with peers.

Each program for each child should be individually designed, but all programs should be scientifically based, measurable, and replicable. The children's gains are measured, and the therapist should be able to prove that the gains are the result of the therapy. This constant measurement is used to adjust and individualize the therapy for maximum efficacy for each child. So there's not a one-size-fits-all intensive program, but there is a commonly shared basis for individualized programs.

I believe the groundbreaking part was that it had a measurable effect on children with autism. Prior to that, children with autism spectrum disorders had largely been written off as uneducable. This is proof otherwise.

It has its critics. Some say that ABA-based therapies reduce the subject to a robot, responding mechanically to the therapist. It is also criticized for ignoring internal mental processes and focusing exclusively on observable behavior.

Links:

Lovaas Method

Cambridge Center: ABA

Journal of Applied Behavior Analysis

CBC story: Lovaas, funding issues

[ 02 October 2005: Message edited by: vmichel ]

I was surprised to read that because in the US, the burden is on the school system to provide whatever is necessary to educate the child with a disability. Thus in the US parents are suing the schools for the same reasons that Canadian parents are suing for health care coverage.

What are the rights of Canadian children with disabilities with respect to a public education? Is anyone familiar with the differences b/t Canada and the US in this regard? I know that's a horribly detailed question but if anyone can fill me in I would be curious.

[ 02 October 2005: Message edited by: vmichel ]

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Originally posted by skdadl:
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Early on, eg, some people started talking about Thorfinn in the third person in front of him...

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Basically Prader-Willi is a missing chromosome which results in a variety of challenges, including: developmental delays, lack of full sexual development, no sensation of fullness when eating which results in obesity, lack of muscle tone, problems with balance, and short stature.

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Are people with disabilities more religious than TABS ?

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Originally posted by vorlon:

The wife and I will be out for dinner at a place where we're not known, and every so often the wait staff will ask me, "What does she want?" I usually reply with, "Ask her." What is it with these people who are afraid to speak with the wife because she's blind? Once in a while she'll pipe up with, "It's ok to talk to me, you know, it's not contagious....

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Hello, my name is CMOT Dibbler and I have CP.

Often society forgets about 'hidden' disabilities, like depression.

That said, no reason why we could not have different threads under category of disabilities.

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Often society forgets about 'hidden' disabilities

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Does your relative have a parking pass that they can put in their window with the wheelchair sign on it? That worked well for my relatives when they had to take my (not obviously disabled) grandparents places.
That said, you could also give anyone rude enough to demand an explanation an earful they won't forget in a hurry. At least then you'll have the comfort of knowing that you'll be the last person they harrass!

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excerpt:

The Liberal Leader said this week he has a hearing problem that makes it difficult for him to isolate sounds and catch the intonation of words, which may explain the trouble he has communicating in English, his second language. Although he has seen a hearing specialist, he said, he does not know the name of the ailment he suffers from.

Now, hearing loss experts and advocates are applauding Mr. Dion's move to speak openly about the issue and give voice to those who may feel stigmatized by their hearing problems.

"One in a place of power might not want to say 'Pardon me' or 'I didn't catch that' because it might be misread as not understanding the question from a cognitive point of view. This is why a lot of people try and hide their hearing loss," Ms. Hannan said. "I am delighted he has come forward."

excerpt:

But people who suffer from hearing loss have trouble distinguishing between sounds, making some everyday situations challenging to cope with. The hearing problem described by Mr. Dion - difficulty isolating noises in crowded rooms, for instance - is a common ailment that may be classified as sensorineural hearing loss. It makes it hard for people to hear high-frequency noises such as consonants.