"The kindest thing anyone could have done for me, once I'd finished five
weeks' radiation, would have been to look me square in the eye and say
this clearly, "Reynolds Price is dead.  Who will you be now?  Who can you
be now and how can you get there, double-time?"  Cruel and unusable as it
might have sounded in the wake of trauma, I think its truth would have
snagged deep in me and won my attention eventually, far sooner than I
managed to find it myself.  Yet to this day, with all the kindnesses done
for me, no one has so much as hinted that news in my direction; and I've
yet to meet another dazed person who's heard it when it was needed most
- Come back to life, whoever you'll be.  Only you can do it.

  How you'll manage that huge transformation is your problem though and
nobody else's.  Are there known techniques for surviving a literal hairpin
turn in the midst of a life span - or early or late - without forgetting
the better parts of who you were?   What are the thoughts and acts
required to turn your dead self inside-out into something new and durably
practical that, however strange, is the creature demanded by whatever hard
facts confront you now?  So far as I've heard, nobody else knows - or
knows in a way they can transfer to others.  If they know, I haven't
thei{ method.  I'll go on sketching my own course then.

--Reynold's Price

  A Whole New Life, An Illness And A Healing  -- 1994

59 responses total.

Thanks mwarner!  Am I really the first to respond on this conf? Peacefrg
will FLIP!  Actually, seriously, I want to thank you for the above message.
It is something we need to share, preparing ourselves for a friend or family
member who can at any moment encounter a traumatic event which will
neccessitate reshaping his/her lifestyle due to a disability.  Thanks for this
conf.

Thanks for the thanks, but I think a good number of people would have been
willing to start this conference.  You were first to respond! 

Me three.

I have Muscular Dystrophy and i think that this is the best thing i've found
yet on the INET.

This is a new conference.  What is needed really is just more people
reading it and adding their discussions.  Feel free to add any items you
wish.  By the way, (if you are new to grex and don't already know this)
the staff of grex is VERY VERY helpful if you have any technical questions
on how best to use this system.  Ask in "agora" or "info" and good answers
generally pop up, or you can e-mail the staff. 

Hey mcmud and bigguy! That makes three of us plus the staff!  WE ARE GROWING!

I'm here too.

Re #0:

People's personalities change after a disabling sickness or injury.  
Conditions that cause severe chronic pain, for example, often make 
people uncommunicative and short-tempered.  You can see the pain in 
their faces, and in the way they carry themselves.  Also, something 
that changes disabled people is loss of identity.  Many (most?) people 
tend to think of themselves in terms of what they do.  Ask, "Who are 
you?" and you'll get "I'm a teacher," "a full-time parent," "an auto 
worker," "a musician," or whatever.  But after fate has taken away 
your ability to do what you do, who are you then?  For most people 
this is an unanswerable question, based on a literally unimaginable 
scenario.  No one is ever prepared for it when it happens, and it may 
take nondisabled friends and family a while to understand.

MD, your message was wonderful and straight! The traumatic experience of an
injury is emotional as well as physical to the Individual; emotional and 
lifestyle changes for family members who surrender personal time/interests to
stay at home with the Individual who suffered the injury .  Let's keep up this 
wonderful dialogue!

Roger that on the uncommunaicativ
e and short-tempered, MD. For me, some kind of exercise usually
helps blow off steam.

My FIL has arthritis and back problmes that are sometimes cripplingly
painful.  He used to think he had to "keep it all inside" and he we
would be jus as MD described...uncommunicative and short tempered.
Over the years, he has learned that when he is with us, he can say
even to the children, "I'm in a lot of pain and just want to be alone"
believe it or not, he relaxesmore and is less grumpy.  He is still
in pain, and we respect that small talk or houshold noise might be
an irritant to him, but he is no longer trying to suffer stoically.
He is comfortable ggoing to his room instead of trying to pretend to 
be okay.  That
 lilittle bit of openness has mad for a much better relationship.

So far this conference has 10 participants.  I'd like to say thanks to all
the people who have taken the time to read and write the various items
here and also to say welcome.  One of the reasons this conference was
started here is because picospan is such an open, easy to use conferencing
system and because grex is relatively easy to get to and make use of.  If
you know anyone that might have ideas to share here or an interest in the
discussions please help them find their way here. 

  Also, if you see (or start) related discussions in other conferences on
grex (particularly outside of Agoro, which most people probably read) let
me know and I can "link" the items to this conference.  For example, I
started an item in aaypsi to discuss access and then linked it here
because it was of particular interest in this conference as well.  I can
see many items in cf's like travel, cooking, music, etc. etc. etc. working
the same way. 

what problems are encountered and what solutions were used...ADA  Americans
with a Disabilities Act problems/updates/discussions/advise.  MANY THINGS.  and
Thanks for your continued interest and support.

In our family, both my wife Megan and I suffer from chronic pain.
Mine's from on-the-job injuries, hers from a mix of congenital problems
and the mistakes of medical science.
I still go to work each day, but it gets harder each time I have to
lever myself out of bed.  Megan's identity has basically been wiped
out several times by medical setbacks.  Currently, she's having 
extreme difficulty with another setback.   I'm trying to teach her
how to navigate around on the Net, because she's housebound much of
the time, and it's a way for her to communicate with other people.
I'll be back from time to time; it's hard to get on from MichNet.

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Hello! I think you have just gotten a new addition to this conferance. I am a
very new user to this place and I will try to come on alot more to learn how to
use it. I am totally  blind do to a lack of developed optic nerves in uturo. I
have

Sorry to post again but like I said I'm new here.
I have a guide dog named Carol who I received in
1992 from Guiding Eyes for the Blind Inc.
I use a Eureka A.4 talking computer to get
around the internet. Well that's about it for now and again my
appologies for the double post. I think I'm
figuring things out now. Take care all.

Welcome to Grex, Tara.  A talking computer - that is truly amazing!

I've been thinking about starting an item in the "info" conference and
linking it here that would be along the lines of "how to make grex easier
to use and understand" because I am beginning to see that people have a
very wide and sometimes unexpected variety of neat ways to get here that
might require some special info or maybe even small changes in the way
grex is presented.  I'll enter it fairly soon.

Hi Tara and welcome!

Very interesting conference.   I'm brand new and just started a few days
ago.  In fact i"m #133 on BBC,  I have had heart trouble since 1980 and 
things got so bad I had a heart transplant at the U OF M.  Sure gave me
anew outlook on life.  Every day is a good day and I havn't met a person
I don't like. I'm a whole lot more tolerant of everything  and I didn't
know I had so many friends. You folks can count on me for whatever.
thanks again.

Glad  Sorcha told us of her talking computer with Eruka (spell)?  There is
also a program called JAWS which is great with our DECtalk synthesiser. We
have one lady who is blind and comes into the office to use this program.
It helps her with studying for her GED...and she is near forty, fifteen
years in the world of blindness.  We are proud of her determination to 
continue her education.

I have been becoming more aware of accomodating differently abled people for
many years, and since I started dating a developmentally disabled woman some
five years ago, my awareness to their needs and concerns have really hit home
with me.  At first I thought that being in love with a DD would alienate
family and friends, but instead, just the opposite happened.  

Maybe ten or twenty years ago such relationships would have been taboo.
However, differently abled people have always been able to express intimacy,
love, and even sex, and now that such relationships are coming out, I feel
that many of these people will get needs met that couldn't have been done
before.

Well said Bruin.  Finally others will realize that some things do happen or
people will find a way to do certain things when there is a (leer) "drive"
or desire.  For myself, years ago, I worked with a hearing lady (Iam deaf)
for a couple of years.  One Saturday when my son was visiting (I am divorced)
he and I went to the grocery store.  We met this lady I work with and when I
introduced my son, her mouth dropped....she gapped, stammered..."But....Ray
...how do deaf...I mean...how can..."  and I told her "You do not do those 
things (make baby) with your ears."   I have had the pleasure of repeating
this story many times.  I still laugh at the ignorance--not the individual--
when this happens.    Could we have other persons experiences on this board?
Happy readings!!

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re # 24:  bruin, one of my employees is completely deaf, and married to 
a deaf man and has two little boys (both hearing).  As she, like many of 
us when I hired her, is a young mother, we felt free to ask lots of 
dumb questions.  Although none was as dumb as what you related, they did
tend to be amusing to her.  Some were about courtesy:  What is the
equivalent of not talking with your mouth full if you are signing at the
table?  Another had to do with substitutions for those sweet nothings
whispered into ears in dark rooms...Her response was a wonderful and
amusing putdown, something along the lines of "how much talking do YOU do
when you're kissing?!"

re #26...Thanks for these tidbits...might I add "Who turns out their light?"
Isn't it amusing that "DEAF PEOPLE LET THEIR HANDS DO THEIR TALKING"....Do 
tell your co-worker of my comments..Please?  I love her attitude!

Hi folks! It seems  that this inyeresting conference has long died out. Anyway
I am  a brand new entrant to grex  and it struck me by surprise to find the
last response on May 1995.Welll I am a congenitally disabled man  (left arm)
from India and I believe there is a lot to discuss among personss like us.For
example it is very dificult for a disabled person to get a driving license
or even a decent job in India .Iwould like to know whrether the world deals
withi it's crippled in the same way everywhere.We have to be born fightrers
to make a place for ourselves in this world.It is a great idea to have like
peaple to talk to.So pplease keep up the conference.

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Welcome Shailendra.  Please enter a new topic or start a discussion in one
of the existing topics, If you wish.  There may be a number of people
still looking at this conference, although it has been inactive for quite
a while.  I too think that this is a good conference, particularly within
Grex's well run conferencing system.  All the participants have had
interesting and useful comments.   The only problem has been getting a
large enough group of regular participants to keep the various topics
active and to introduce fresh topics.  

  Who knows?  One person getting involved could be all this conference
needs to get rolling again.  At one time I had hoped that this conference
might actually draw people to Grex specifically to participate in the
"disabilities" cf.

This response has been erased.

I think what you suggest would be a good idea.  To be fair to any
participants, though, someone should F-W this conf. who spends more time
with it than I have been able to or am likely to in the near future.  One
other draw back is the intentionally general nature of a Grex conference.
I think it is a good feature, but at the same time many people who are
interested in dissabilites issues already participate in very specific
discussion groups and the like on the internet, and may not have time or
interest in a general conference.  Still, I liked what I saw of this
conference and wish it could continue.

Hi my name is Rosemary Goddard. I am new to grex. I was extremely happy to
see a conference like this one. I am a single mother of two disabled children.
They have a genitic disorder known as 3Tp-monosopy, it has to do with thier
chromosones. It causes mental retardation, and my son is also Deaf. I would
like to meet someone whom I can talk to on a daily basis about them, and about
me. Raising my children is hard, but I love them too much not to do it. By
the way, I'm 23 and my children are 3years and 16 months old.

Welcome to Grex, rosemary.  It gets easier <tm>.

I'm concerned about developmental disability as well.  In fact, my 
girlfriend Janet has a developmental disability herself.

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thank you for the welcome.. I am very new to the format here... so if I have
alittle trouble responding to messages forgive me.
x

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Please define developmental disability.   Is this genetic or acquired (or
both), physical, mental, emotional...?  When I asked someone at a nonprofit
that trains people for jobs, they said it meant simply 'retarded'.  Can this
be?

Mike, it says you have not read your mail since Dec. 19, but you seem to be
logging on.  I entered a disability-related item under language (I think it
is #90), can you link it?  

- Backtalk version 1.3.30 - Copyright 1996-2006, Jan Wolter and Steve Weiss