[misc.handicap] H E L L O !!!

Mitch.Turbin@p0.f71.n343.z1.fidonet.org (Mitch Turbin) (07/04/90)

Index Number: 9029

[This is from the Silent Talk Conference]

Hi Ladies,
 
I was very interested reading your recent dialogue (hope you don't 
mind the eavesdropping.) Very similar thoughts and experiences to 
mine. I have Usher's Syndrome Type II.  That means that I have been 
gradually losing my hearing and vision over the years. Kinda hard 
at times, fer sure. I never know if the people I meet are going to 
take so much educating that we never get to just relax and be people, 
rather than subjects of each other's paranoia. Tho I have very little 
hearing left, I tend to still prefer using my own ALD's, mostly a 
Telex FM system. In fact though, I end up using signing with hearing 
friends who don't know sign language at all!! In other words, new 
habits are arising.
 
And the beat goes on...
 
Hope to chat again sometime. Enjoy til then.
 
Mitch 

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Vixen@f11.n203.z1.fidonet.org (Vixen) (07/04/90)

Index Number: 9032

[This is from the Silent Talk Conference]

Hi Mitch,

Well, I am glad that you were following the discussion cherryl and I
were having and decided to jump right in. These conferencers are a
whole lot more fun when you participate instead of just being a silent
reader.

As you already know then, I am also sight and hearing impaired. In
fact, when my hearing really starting popping away, some of my doctors
at first wondered if I might have "ushers Syndrome" as well. But, my
blindness really has nothing at all to do with my hearing loss, each
has a very specific and unrelated diagnosis.

I know what you mean about needing to take time to educate new people
so that you can get past the awkward communication barrier and just
feel easy in each others prescence. Myself, I tend to be very assertive
in letting both deaf and hearing know that they can communicate quite
easily with me if they will just approach me and be patient.  I find
that othere people imaginations, both hearing and deaf, make my actual
problems seem far worse than they are.  But, I certainly can understand
what you are saying.

I also use sign, but sometimes it hard for me to remember a specific
sign and I have to fingerspell because not enough hearing impaired
either care enough or have courage enough to approach me on a person to
person basis. Of course, I am making a generalization here.  But I
consider it the very same ignorance that some deaf people have toward
hearing people and hearing people to deaf people.

I often tell people I understand this type of behaviour because as
sight and hearing impaired persons, we are a deaf persons worst
nightmare walking around on two legs. But, I am begining to think that
is just making excuses, the fact is, it is only lack of concern and
ignorance that cause people to want to avoid us, whether they be deaf,
blind or hearing and sighted.

So you might ask, what do "I" do about it, well, as I said earlier, I
am very assertive and I try to be obviously friendly and open and I get
out in the world and do things and let people see that I can do things,
I can communicate and I might even be an interesting person!

How about you, how do you deal with it all?

Keepin' the faith!

.                          Vixen

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Mitch.Turbin@p0.f71.n343.z1.fidonet.org (Mitch Turbin) (07/04/90)

Index Number: 9033

[This is from the Silent Talk Conference]

Yo ho Vixen,
 
Thanks for your reply. You asked how I deal with "it all." Well, I'd 
say that, like you, I rely on assertiveness to get through to the 
people that are reachable, and I use my feet to get around when and 
where I can to have as wide a variety of contacts as possible. Since 
so many are indeed, consumers of my energy, rather than contributers 
and supporters, I've learned to set limits on how much energy to put 
out in any particular direction (i.e. move on to other people). There 
was a time when I devoted a considerable amount of energy to participating 
with deaf and deaf blind people, but I realized that the returns weren't 
always supporting the investment. Variety thus is not only the spice 
of life, it insures that the staples are more available too.
 
I'm curious about where you are, both geographically and in terms 
of stages of disability and life. I'm in Seattle, tho NY was home for 
most of my life. And tho in my 30's, I'm back to being single and 
a student again. That makes a big difference in the kind of people 
I meet and the kind of support system that I have. I think if I was 
younger or older, or had my family around, I might be more (less?) 
patient. What do you think about that? Or do you think it's really 
a matter of personality? I mean, it's interesting that there are such 
different styles of coping with the difficulties of communication. 
Also, of course, there are the inevitable sexual politics, with the 
attendant complexities there.
 
til soon,
Mitch 

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Vixen@f11.n203.z1.fidonet.org (Vixen) (07/13/90)

Index Number: 9108

[This is from the Silent Talk Conference]

Hi Mitch,

Well, you know, it sounds like you and I deal with our life
situations in a very similar fashion. I also get the impression
that we share some of the same feelings and frustrations. I
especially relate to your comments about "our" having to work so
hard expending energy to make others comfortable around us and
working extra hard at being social so that we do have contacts and
that we are seen as fun and worthwhile people to know and to wrok
and play with!

I also, have some interests in participating with the deaf blind,
but more along the lines of perhaps working with them in some
capacity as opposed to building my social life around deaf blind. I
am far too active and live too much in the world of the non
physically handicapped.

To answer your questions about where I am at. Geographically, I
live in Sacramento, California. In terms of my disability I am
legally blind with visual acuity beyond 20/2400 in each eye, though
I can see colours up close, have good but painful light perception,
and can see shapes and people, though my vision is fuzzy and
cloudy. I do have useable peripheral vision though.

I have been losing my hearing to Otosclerosis with some other
complications and had to be prescribed Binaural hearing aids and
assistive listening devices and my right ear is still fighting to
hang in there and even works pretty good in very quiet
environments. I have had a mild hearing loss in my left ear for
years and it just started to really roll not too long ago and then
suddenly lost a considerable amounnt of hearing within the past six
or seven months.  So, I am not as well adjusted to losing my
hearing as I am to my vision loss.

I also am a very severe allergic with chronic and sometimes severe
bronchspasm and everything from house dust to a short walk outside
could set me off, so I have a Pulmo Aide and other goodies and meds
and since someone decided all this wasn't enough, they decided to
toss in some hypoglycemia and a suspected floppy heart valve (The
less serious of the two types.)

But, I am actually, very social, very active and my blindness is my
only obvious disability until one of the others lays me out for
awhile heheh.  However, I am "happily maladjusted and enjoy life
and all that. But I look good and that is something heheheh!

Ah, the politics of sexuality and disability! Generally, I do quite
well in this department, at least as far as those guys who are not
frightened by my sight or hearing loss or the toys I use to get
around them! Men certainly do seem to take an interest in me, but I
will share that I have shared some of the same pains in this area
as other disABLED people. I have had those guys who I liked very
much who just could not see past my physical limitations. Too bad,
they would have found out just how unlimited I really am heheh! But
all in all, I do pretty good.

I am looking forward to sharing more thoughts and ideas with you!

Keepin' the faith!

.                         Vixen

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Jack.O'keeffe@f26.n129.z1.fidonet.org (Jack O'keeffe) (07/13/90)

Index Number: 9115

[This is from the Silent Talk Conference]

Hi, Mitch,
     Sorry you missed the SHHHBASH in Little Rock, but you were a
whole lot cooler at home.  Hot as hell's hinges there! Whew.  The
major new attraction (In addition to the Anniewich vs Miss Piggie
spectacular) was the First Annual Gathering of the Clan of Silent
Talkers.  As always, it was the PEOPLE who made the convention
worth attending.  Saturday evening we rallied 'round the RJ11
jack in my hotel room, Frank brought his Toshiba, Roy his Zenith,
Ann and Wayne were there, and a couple of young programmers that
Wayne found and was introducing to Fidonet/SilentTalk.  Laurie
was involved in a wedding at home, and didn't make the scene 'till
much later that evening.  Many of the program sessions would be
familiar to you if you attended Palo Alto, Chicago, Rochester,
and Bethesda.  As always, an attempt was made to advance the art
of assistive listening systems.  This year it was Audex trying
some new ideas.  The kindest thing I can say about that is they
did a helluva lot better than Oval Window did in Bethesda.  Still
quite a way to go, but we're progressing.  Realtime captioning of
the plenary sessions and some of the workshops was VERY WELL DONE.
American Data Captioning (Caption America) did the honors this
time, and they were great.  The captioned notetaking using PCs
and overhead projectors in other sessions worked as well as the
person on the keyboard.  There seemed to be a bit more oral
interpreting, and possibly a bit less ASL, but that's just an
impression - not a survey.

You made some really valid points in your recent post to Vixen.

 MT> but I'm happy to be using these B I G hearing aids (FM
 MT> reciever and microphone/transmitter) so that now people can
 MT> see that I'm hearing impaired. It really does make it easier.

Wish more folks would realize that, and not waste time and money
trying to get "invisible" aids to hide their hearing loss.  Those
little "stick-it-in-your-ear" thingies don't actually help much.
Some of the SHHHers wear fireengine red aids to be sure people
notice.  Ah well, people used to feel the same way about eye
glasses - now they are fashionable!  Maybe we need "designer" aids.

 MT> I'm in the unusual situation of beginning a national lecture
 MT> tour (I kid you not) to discuss issues of late onset hearing
 MT> loss and visual loss . . .

You will, of course, post your itenerary?  And I hope you will make
it to Denver next year for SHHHBASH VI and SilentTalk II (not to
mention the Anniewich / Miss Piggie rematch).

Best regards,

... Jack.

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