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Jaime Fradera
Senior Member
since 2000-11-25
Posts 843
Where no tyranny is tolerable

0 posted 2002-08-18 05:25 PM



Jaime’s story: improved and revised.
For newbees fortunate not to have seen the first version and for oldies
who’d like to read the new version.
The trouble with our culture is that our value to the society is measured using  criteria that have nothing to do with the quality of our
lives--the
            only thing that really matters.  This leads to the perception
that
            those who posses certain attributes or material things,++ or
the
            money with which to procure
            them, are thought to be more important and worthy of
attention than
            those who do not.  (If you doubt this, try making your rent
or
            house payments with love, and see what happens to you!)  And
the
            tragedy is that so many of us buy in to this fallacy even
when we
            know better.  For many years I bought in to
            it as well, and it almost killed me, as I was presumed to
have
            nothing and be valueless.  In this piece, I will relate the
story
            of how I learned that I am neither deprived nor deficient,
that I
            was not a worthless wretch just because I couldn't drive a
car, see
            a motion picture or ever hear a symphony orchestra again.
All of
            us, as blind people, are taught, from a very early age, that
we
            cannot be useful, that we have nothing, that we should
receive and
            not give as others do, and that we have no business aspiring
to
            have a normal life.  This drum=beat brain-washing continues
right
            on through adulthood and is the cause of untold suffering.
The
            message was driven, hammered home to me twenty years ago.

                 Up until I graduated from the state boarding school for
the
            blind, blindness had not really been much of an issue; but as
I
            enrolled in junior college in the spring of #1975, I stepped
out
            into the ordinary world for the first time.  I was still a
            teenager, and hence, still preoccupied with looking for
girls.
            Although having a social life at the community college was
            difficult, I supposed it was because there were no dorms, as
would
            be the case at a university.  What really distressed me that
            semester, though, was being pressured to join a special class
and
            club for the blind.  On my first day of school, of being out
in the
            greater world, I found myself with none other than a bunch of
            people from the school for the blind, from whence I thought I
had
            escaped.  This told me, implicitly, at least, that I couldn't
make
            it socially with sighted people, certainly not sighted girls;
and
            so the best I could hope for was to hang round the blind.
This
            theory only seemed confirmed later, when I was made to live
in
            blind apartments, seek comfort at a blind bar, go to yet
another
            social club for the blind set up by the rehab agency--all
with the
            aforementioned cats from that "happy home for incurable," my
term
            for the school for the blind.  In fact, there was even a
doctor, a
            certain Dr. Patton, who did therapy on us and saw to our
emotional
            needs since we were, after all, former inmates and not really
            normal.  Had this been the end of it, I could have borne it,
for I
            understood some of my difficulties were imposed by others.
But it
            did not end there.  I would yet learn, in forceful ways, just
how
            deprived and unfortunate I really was.
            A year earlier, we had made the acquaintance of yet another
            man with pretensions of being a father substitute to us, as
Mother
            was divorced.  Because I was the only son, some of these
would-be
            patrons tried to win my favor by taking me out to eat
hamburgers
            when I wasn't away at the school--or even when I was.  I was
never
            impressed by any of these people, sensing their interest in
me to
            be superficial if not faked.  I just ate as many hamburgers
as I
            wanted, knowing big daddy would have to pay, and ignored them.
This new
            pretender fared no better than the rest, although he was more
            persistent than most. And, like so many self-appointed
benefactors
            of the handicapped, he got everything all wrong!

                 What I needed, he told me, was a woman, not just any
woman,
            but a prostitute.  It should be borne in mind that, in Latin
            countries,
            it is a common practice for a father to take his teenage sons
to a
            brothel wherein they might learn the feel of a woman and the
            mechanics of making love, this being considered a proper
right of
            passage into manhood.  I was less than enthusiastic.
Although I
            was curious what it would be like, in fact I was not ready
                 My would-be mentor had no such qualms, however, and one
night
            in my first semester of college, he brought me this I don't
know
            where he got her prostitute.
            It was awfully!
              I was
            as uncertain as ever about having sex with one but did it
anyway;
            and then, of course, I wished I had not.   It felt kind of
like an
            operation, which it was, or maybe like wanting to go to the
bathroom.  this (of
            course) was at no cost to me since I was, as big daddy said,
            "sightless.""  And what of my prostitute, Wwwww?  After being
told
            I
            was
            deprived, after giving me what she had heard I needed, she
must
            have been perplexed by my indifference and ingratitude.
Though
            sighted, she needed a man to find her a customer, bring her
to work and take her home
            again, and I am sure he gave her something to help her make
it
            through another day; and I doubt that she felt very good
about
            herself or what she was doing.  I had been tricked into
tripping
            over my Catholic and Southern Baptist upbringing, a theological
            hodgepodge which purported to teach me when sex was sacred and
when it
            was profane.  To my mind, a prostitute was "dirty;' I had
been with
            a
            prostitute
            and therefore I was "dirty" too.  Instead of reassuring me
that I
            could make it with girls, this only seemed to tell me what I
didn't
            have and couldn't do.  For if I had it so bad that only a
            hookier
            would ever want me, (for a fee, of course) then how could
anybody
            else--for free?  Now I felt so bad, so degraded and sick
inside,
            consumed with guilt and remorse that I had let myself be
used, and,
            worse, had participated in my own violation.
                 That summer, in 1975, I moved into the aforementioned
            apartments of the blind, trying to go to summer school.  And
it was
            here I would be told that I was even more deprived than I
Imagined
            possible.

                 This was a bleak time, my first apartment in San
Antonio.  I
            had too much time and not enough to do; and I amused myself
by
            listening to Armed Forces Radio.  I detested getting mixed up with any more blind people and had no social life.


            My life was full of monotony and sameness, of empty days, of
            sleepless nights, and then one day I heard about the dating
            service.

                 There are few things that sadden and disgust me more, I
think,
            than the way so many dating and mating so-called "services"
exploit
            and suck money out of desperate lonely people in exchange for
            broken promises of instant love.  The one I went to was
called
            Match-maker something, 1259 Jackson Keller, and upon hearing the commercial, I
called a
            cab.

                 On arriving I talked with a certain Jack, who told me
how the
            service worked.  For a fee of $250 one could look at pictures
of
            women in their file and make a selection, and conversely,
your
            picture would also be available for women to select.  He said
that
            if I paid the $250 fee my picture would be put in the file
but that
            I
            couldn't see the pictures.  I offered that perhaps someone
could
            describe the pictures to me; but this Jack person repeated
that
            they couldn't do that and I had to see the pictures and I
couldn't
            see the pictures.  Well, I thought, couldn't I hear their
voices or
            something?  But Jack person only retorted that, look, I would
have
            to see the pictures and I couldn't see the pictures because I
            couldn't see.  I decided I couldn't convince him and got a
cab for
            home.  Back home I decided I'd been chicken and should have
stood
            up for my rights.  I called Jack person back to resume the
argument
            on the phone; I don't remember which one of us hung up.
                 Two hundred fifty dollars!  Was this the price for a
date; was
            this the cost of love?  That was all the money I had in my
San
            Antonio Savings account; and I was only getting $97 a month
from
            the government. The fact I had even considered such a rip off
            racket only illustrates how desperate and how naive I really
was.
            But fortunately, I decided paying out two hundred just to sit
            around and hope to be selected wouldn't be a good
investment,;
            especially since I was blind; so who would want a blind
person like
            me, anyway--except maybe another hooker----for a fee, of
course.
            I did not know then how
            to
            live outside an institution, and unknown to me, I was also
very
            ill.  When I finally saw a doctor and went into the hospital,
it
            was late; but not too late.  And it was in the hospital that
my
            life would take a sudden and dramatic turn, and the dogma
that no
            woman could ever want me because I was blind was about to be
            disprove and shattered, forever.

            The hospital in which I stayed was a teaching facility for
            students in the nursing program, and it was common for these
            college-age students to see me on their rounds, sometimes
singly,
            often with trailing instructors.  If they tried to draw me
out and
            make me talk I just ignored them, sensing that as amateur
            clinicians most were only there to
            get a grade, knowing they would leave me and move on.  But I
was
            not prepared for Xxxxx.

                 The trouble with Xxxxx was that she took her nursing
charge
            too literally.  She came in one morning, woke me, introduced
            herself and took my vitals, like all the rest; but then,
instead of
            leaving me to my own devices, she wanted me to have lunch.
this
            seemed odd as I knew I would be fed lunch.  Then she said
that,
            well she wanted to have lunch so why not??  I think I sort of
            growled at her, thinking: Don't they have lunch breaks?  But
she
            kept bugging me, pestering me, saying that, well, she wanted
me to
            have lunch with her so why wouldn't I lunch with her?  She
just
            wouldn't leave me alone until I said that, well, okay I would
have
            lunch; hoping she would leave me in peace.  She finally did
leave--
            for a while

                 And so it was that, carefully, tenderly and patiently,
with
            the skill of some one born to her profession, with the
insight of
            a woman twice her age, Gentle Xxxxx
            reached inside me, and drew me out; and did so in a way that
no one
            else
            had done before.

                  Alone among the nurses Xxxxx truly seemed to care, for
she
            brought the joy and precious Sun my shattered spirit needed
most.
            Every day she came to see me she exhorted me to smile, and
smile
            and smile again, saying I looked so much better when I
smiled.  And
            she insisted that I groom and dress for when she came to see
me,
            not stay in hospital pajamas;
            that I go for walks with her on the grounds--and no one else
did
            that
            And when I left the hospital, Xxxxx followed.  She stood with
            me for hours, waiting in lines that never moved, waiting to
be seen
            at
            welfare offices, waiting for prescriptions to be filled,
taking
            all the time it took for me to understand how to use the
pharmacy
            and get what I needed from social service technocrats that
did not
            have the time to care.  This was absolutely critical, for I
did not
            know then how to live outside an institution and had
virtually no
            private support system at all.  I am convinced that, if she,
or
            someone like her, had not gotten personally involved, I would
            eventually have gone off the medication, that the illness
would
            have
            recurred, that my life would probably have ended, that you
would
            not be reading this post.  Instead, In the weeks and months
that
            followed, she showed
            me in ways I would never forget, that it wasn't what I
couldn't do
            that counted, but what I had that mattered most.  And of all
the
            golden treasure Xxxxx saw locked up inside me was my own
living
            humanity, that, unlike
            anyone else she knew who could see, I seemed always to have
time
            for her.  I would notice, I would listen, I could understand
and
            care.  And it was for all of
            that and more that she had loved and needed me, that a world
of
            lonely people needed me--and what difference did it make that
I had
            been a patient; what matter did it
            make that I was blind.


            (so, how about that, Mister "Jack" sir.
            If you're still operating, squeezing money out of desperately
            lonely people, I have a message for you, and it is this:

            Ha!     Ha!     Ha!     Ha!     Ha!
            Perhaps it was YOU who couldn't see the picture!!!)

            Xxxxx was the last oasis, the final  life-giving spring
before
            my great crossing of the desert.  For as I went on to
university,
            the rejections and browbeating continued: I was blind.  I
could do
            nothing.  I could be nothing. I had nothing.  I was worth
nothing.
            No one would look at me because I couldn't look back.  I
should go
            to a special university for the blind.  I was strange and
freaky,
            the amazing blind person that walked alone without a dog.  I
wish
            I could tell you my chief tormentors were 17-year-old
ignorant
            university freshman boys and girls, but they were not.  The
            generals who led this charge were the counselors and teachers
I was
            turning to for help.  And just what sage advice did they all
have
            for me?  That I should be so ashamed of who I was that I
should
            pretend to be what I was not; that I should wear bigger
glasses to
            look more sighted, even more radical procedures to make
myself seem
            "normal"; Though even then, I never could be.
            I wish I could tell you that I knew better than to believe
            them, that the hail of epithets (however kindly meant or
well-
            intended) bounced off me, that the barbs, the pins and
needles
            never stuck me--but they didn't bounce.  They stuck.  they
hurt me,
            and made me bleed inside.  Inside is the worst place you ever
want
            to bleed, because there's little you can do, to make it stop.
And
            as the barrage continued, semester after semester, year after
year,
            I withdrew, curling to a little ball inside myself, flinching
from
            the funny world outside.  For in my fantasies and solitary
skull
            games, I could hear what no one else had time to tell me.  My
old
            girlfriend was there to telephone after a "bad day" again,
there
            reminding me, "please smile, and smile, and smile for me
again;
            because you look so much better, when you smile!"  And
sometimes
            there were also others,  and they were friends of herb's, and
mine.
            And like no one else I knew outside, they seemed always to
have
            time for me; saying there was nothing wrong with me, saying
please
            take care of me, that there was still a world of lonely
people who
            needed all I had to give
            and so, for my sake and for theirs, I left the university,
            having lost most of my hearing, and went home to San Antonio,
to
            reconstruct my life.  I was now a member of Mensa and began
            attending social functions.  It was at one of these, a month
after
            quitting school, that I met Yyyyy.

                 For the first time in eternities, it seemed, I was in
the
            company of adults, not boys and girls.   Yyyyy was distraught
over
            her recently failed marriage and we began to talk.  Given my
own
            recent battering, perhaps you can imagine my astonishment and
            delight to realize that Yyyyy who wasn't "disabled," was
actually
            confiding in me; and even more amazingly, that it

                  didn't seem to
            matter to her that I was blind and could only just barely
hear her,
            patiently repeating and repeating  until she finally got it
            through--and how many people bothered with all that?
            (today, I understand that this is normal and that my
differences
            with sighted people, despite what I was always taught, are
only
            superficial, but at the time I did not know this).

                 And I was even more astounded when Yyyyy called on the
phone
            to ask me out!  There was an art exhibition, and she had
talked to
            the curator to inquire if it would be all right for me to
touch the
            sculptures, and it would be no problem.  She picked me up
with a
            friend, so I actually got to go out with TWO women instead of
one!
            And I hadn't had such a good time in such a long, long time.

                 We kind of "broke up" after that; perhaps we were both
too
            absorbed with the wreckage of our lives.  But, to me, what
she and
            I had had together could only mean one thing: That I really
could
            be the object of a woman's desire, in the privacy of my own
            thoughts, that there was nothing wrong with me.


                 Great stuff, all of this was; and I would have to take
what
            comfort I
            could from it.  For as I continued to press for inclusion and
            acceptance in the greater world, the browbeating resumed.  I
was
            surprised to learn that the crazy doctor, the same one who
"did"
            the
            blind, was still operating, and that the blind club at the
blind
            bar was still going strong.  I was naive enough to think I
had a
            choice not to go to the blind bar and play beep baseball, not
to get
            mixed up with the crazy doctor, to insist there was nothing
the
            matter with me.  But there were others who did not agree.


                 It came to my attention one day that the San Antonio
Free
            Clinic was offering a free class for singles, and I thought
this
            would be a great way to get out in the world and meet more
            people--especially women.
            And since the announcement didn't say that the handicapped
were
            not invited, I was naive enough to think I would be welcome,
and I
            took a cab.
            It turned out to be one of those touchy-feely-talk-about-
            yourself pop psycho-babble encounter therapy groups wherein
            everybody forms a circle,
            takes turns talking, but never says anything that matters to
            anybody else, and the therapist plays a game called active listening.  I sat in the center of the circle, explained
that I
            couldn't hear too well, but that by getting near enough to
each
            person as they spoke, I could participate in the discussion.
All
            I remember about the first session is that the group
"facilitator"
            was yelling.  Since it was hurting my ears, I asked him not
to
            yell; but he kept yelling.  Since he had told me that he was
a
            veteran, I supposed that he was disabled too and might have
been
            deafened by the sound of general Giap's exploding artillery shells while single-handedly defending the Khe Sanh Marine combat base, or
something.
                  But at the next session the problem turned out to be my
            presence in the group--though I don't know that anyone else
            complained.  The session began with the "facilitator"
complaining
            that he had gotten a sore throat trying to yell at me the day
            before, and  yelling at me that I was too distracting and
that I
            couldn't be in the group because I was handicapped and they
didn't
            have time and I should go to this group for blind and maybe
hearing
            impaired he didn't know but he knew about this doctor whatsit
and
            would give me their phone number.  When his tirade finally
stopped,
            I told him I knew more about the Crazy Doctor and his "group" than
he ever would and that I had purposely chosen a class open to the general
            public.  He countered that I was deaf and couldn't be in this
            group.  I countered that surely something could be worked
out.  He
            countered that they didn't have time and more single women
were
            going to join.  I countered that was all the more reason to
stay
            and I wanted to meet more people too.  We kept at it, the
            "facilitator" and I, in this marathon contest of opposing
wills and
            philosophies.  I said I didn't want to just sit around the
house
            and wanted to live in the world.  He said I should go to the
agency
            for the blind.  I said I knew more about the agency than he
cared
            to.  I said I had had relationships with women and I had
something
            to offer the group, and furthermore, that he was depriving
everyone
            of the chance to know me and of what I had to offer.  On we
went,
            and the others started complaining I was taking too much time
and
            others needed to talk and it was getting late; but we just
kept
            arguing!  I appealed to them for support, asking them to try
to
            reason with their "facilitator," but no one wanted to.  I
told them
            I wanted to live, to compete, to make my way in the world,
            only to be told that wasn't realistic and to talk to the
blind
            counselor---or was it the counselor for the blind----he
wasn't
            sure...  By now, it was almost #9-00.  I tried to tell them
what
            they would miss by excluding me, that they would regret it
later,
            that no one else in the world had what I had, that they would
be
            all the poorer for leaving me out--but alas, all my pleading
was to
            no avail.  I finally decided the "facilitator" wasn't about
to
            facilitate my participation.  And as if to underscore the point some one volunteered to take me home.  For
I
            realized the futility of participating in a group that didn't
want
            me.

            I wish I could say it didn't hurt me, to be kicked out like
            that, but it did hurt, and still made me bleed inside.  It
hurt me
            to be told my blindness and deafness were so freaky that no
normal
            people would want me, so horrible I could not even be human.
I
            wanted to believe I knew better--and I did know better; yet
it
            still hurt; still made me bleed, and cry.  On the other hand,
I'm
            sure I bore this kind of vitriolic trash better than I ever
had
            before.  By now, I could cite a body of evidence to support
the
            contention that I was important, that I was still needed in
the
            world--even if everybody else said I was not.
            I had also found, in Mensa a degree of acceptance and
support
            that I had never known before, the more unusual because those
who
            included and understood me were not blind.  I was learning
how to
            avoid toxic browbeating people; I was learning how to select
the
            company I kept, the programs I listened to, the friends I
made.
            And it was with the help of a salesman friend of mine that I
            finally moved to Austin, in the summer of #1983, where I
would once
            again begin to re-invent my life.

                 I moved into one of the co-op houses near U.T.  It was
called
            the Ark, and held about 50 or so college-age kids in the
summer
            time.  When I was admitted, the question arose as to what
sort of
            labor I could perform for the house.  No one seemed to know
what I
            could do, and neither did I, but we tried various things.
the
            behavior of those kids was commendable because, though they
knew
            almost nothing about blindness, I was never treated
discourteously.

            In the end nobody made much of an issue over holding me to
the
            labor requirement; and being the lazy person I am, neither
did I,
            though I still wished I could find a way to be useful.  Soon,
I
            would be, however, and in a way I could never have even
imagined
            possible.

                 The trouble started over something trivial and silly--my
            decision to go back to school.  New audio equipment was now
available.  The house had made it policy that
            you had to be a student to live there, and everybody who
cared to
            know had plenty of advance notice from me of my plans.  I was
also
            undergoing a massive psychological transformation  I was
gaining an
            appreciation of my personal worth, that I did not have to be
            hostage to circumstances, that I could carry out my own
plans, and
            control my own life--even though I was now both deaf and
blind.
            and, not surprisingly, there were others who did not agree.
            When registration opened that fall; I requested a nuisance
            form, claiming tuition exemption, from my rehab counselor at
the
            Texas agency for the Blind, but she denied it on the basis I
did
            not have a 2.0 grade point average and was not taking 12
semester
            hours, repeating she had told me many times that she could
not
            approve my plans.  (this would later be exposed as a pretext
she
            used to dominate and control the lives of her clients,
threatening
            them with loss of funding of services if they didn't do what
they
            were told; that her actions had nothing to do with agency
policy
            and everything to do with intimidation and browbeating.)
            There it was again.  I could not do what I wanted; I could
not
            live in the world; I couldn't even go to school.  It would be
hard
            to imagine how many sighted adults would tolerate such
mindless
            dribble, such arrogance and interference in their personal
lives.
            In an unprecedented act of defiance, I requested a supervisor
            review without even knowing if it was allowed and without
having
            any idea what I would do when I got there.  I was talking
back to
            "god" for the first time; and it was very, very frightening,
            especially because "god" was blocking my financial aid, as a
            controlling device, and I was about to be kicked out of the
ark for
            non payment of rent.  Next, I tried to reach some one in the
            Governor's office, then the state library.  I was beginning
to
            shake--to shake with both fear and unbridled rage.  I was
racing
            against time, for I was losing what was left of my hearing
very
            quickly.  Then I RAN over to the school and registered,
paying them
            $200 I didn't hare.  Then, on a tip, (and with some
reservations)
            I called the local president of the National Federation of
the
            Blind, the NFB
            There I was again, back with the blind; but I had never been
            here before.  These were not like the passive, complaining
blind
            people of my past.  They had jobs and families; they had
schedules,
            places to go and things to do.  Instead of living apart from
the
            greater world, they were right in the middle of it, right
where I
            had always wanted to be.  And what was startling was meeting
            friends from the school for the blind, from the past.  Mike
            Marshall was there,, and Tommy Craig, and others--guys who
had been
            trouble-makers at the school, who wouldn't conform, wouldn't
do
            what they were told, earning the ire of the administration,
and who
            left.  They told me that many in the Texas affiliate were
            despairing of finding a student to contest new unpopular
            regulations promulgated by the agency for the blind.  Now, I
was
            doing it, and I was pledged the full support of the
organization,
            that the Federation would do whatever it might take to help
me
            carry out my plans.  This they did, and two years later I was
back
            in school, ending the term on the honor roll.

                 But more than that had been accomplished.  Eventually,
the
            regs used to keep me out of college were struck down by the
Texas
            legislature; and appeal and fair hearing procedures were
            streamlined.  I have been told many times that what I did was
            courageous and historic, but I feel rather uncomfortable
writing
            about that.  All I ever wanted was to be free to run my own
life.
            I can only describe the miraculous wonder I felt over what my
own
            persistence had brought me, that for the first time in my
life I
            had openly contested the power of those who would have ruined
my
            life and broken my spirit, and won a victory in which each
and
            every one of us can share.

                 The next several years were hard and turbulent.  I was
now
            attending a new church as my social circle widened with new
            friends.  Many interesting people came to live with us at the
ark;
            and they were an important base of support for me.  I tried
five
            times to complete another semester before I finally
succeeded.  But
            the illness began to rage out of control, giving me
unpredictable
            spells of total deafness lasting anywhere from a few hours to
a few
            months at a time, complicating everything I did.  In #1986,
as my
            illness worsened, I went into another rehab program, only to
have
            them conclude, after two months of testing, that I was not
low-
            functioning and was learning disabled because I was blind
which
            made me multiply-handicapped which made me a patient because
I
            needed a social worker.  This was by far the most painful
            browbeating of all; but it was also the last.  As #1987
began, I
            was now in extreme discomfort, and my doctor persuaded me to
let
            him do a surgery to relieve my symptoms and hopefully arrest
            further damage.  I had this done in April, and after a few
days in
            the hospital I went home to recover.  It was there, while
            recuperating at the Ark, that I met Zzzzz.
            My eyes mist with tears as I am writing this, as I remember
            her.  Zzzzz had moved into the adjoining suite when I came
home
            from the hospital.  For a few weeks we would briefly exchange
            courtesies.  She would tease me as she passed me in the hall;
and
            I would sometimes say hi as I passed her room, or knock to
see if
            she was home.  She was friendly but reserved, so I guessed
she was
            also a student.  On the other hand, I was feeling very sick
from
            the effects of medication and deep surgery. I was even afraid
I
            would never be well again.  I had too much time and nothing
to do
            with it, as all my plans to do anything had been thwarted,
            temporarily, by the illness.  As yet another "storm" began of
            deafness, I don't think I could have felt more lonely,
useless and
            sad, knowing nothing else to do but to keep reading the same
            Braille magazines over and over.  But then one night, in the
midst
            of my dizziness and pain, Zzzzz wanted to talk.
            I told her what I told everybody, about the illness and that
            I couldn't hear.  When she wouldn't leave I told her it would
be
            easier to go talk to somebody else, but she wouldn't leave.
I said
            it would be easier to talk with me in a few days, maybe
weeks, when
            the deafness cleared, but she still wouldn't leave. My ears
hurt.
            I was getting exasperated with her.  I felt bad and wanted to
lie
            down.  Didn't she understand I couldn't ''' Then she began
spelling
            into my hands; and I decided to make an effort and see what
the
            trouble was.  I got my keyboard and she began typing right
away,
            but the machine was broken, yet she kept insisting this was
            important.  At last I yielded to her, wondering in amazement
why
            she would want to go to so much time and trouble just to talk
with
            me--and not another person who could hear!  And just what was
so
            important that we had to talk about it now, not later, right
now?

                 It was Zzzzz, herself.
She was lonely and wanted to talk.
            She spoke of a world obsessed with trivia, with superficial
            appearances, full of counterfeit people playing stereotyped
roles.
            People didn't want to talk about important things, things
that
            mattered and counted.  She was important. She had something
to say,
            and nobody seemed to really be listening to her.  (How
astonishing
            it was to me that, although I was deaf, she still thought I
would
            listen, and understand her!)  She spoke of a brief and
violent
            marriage, an abusive husband that threatened to follow her if
she
            tried to flee, and how she fled anyway.  On we went.  She was
a
            poet, she said and, yes, I could read her one of mine.  The
piece
            of twaddle I read her was but an effort, full of mistakes.
and how
            wonderful it was that a sighted person wanted me to read to
them!
            And when I finished, about all Zzzzz said was, "O! ''' O,
Jaime,
            ''' O! '''Oh! ''' And so we continued.  We talked of our
fathers,
            our childhoods, our bills, even our diseases, and just about
            everything else in the entire universe--and the more we
explored,
            the more we had in common.  Finally, after several hours of
this,
            we called it quits and went to bed--separately, but right
next
            door!

                 I had fallen helplessly in love with Zzzzz and I always
will
            be.  I loved her unbridled passion; I loved her
determination; I
            loved her intellect, her command of English.  And most of
all, I
            loved the way she wore down my plastic persona, the way she
broke
            through my stiff reserve, the way she finally reached inside
me and
            drew me out, the way she showed me I had more ability than
others
            who were not "disabled" that she still needed me.  Today, I
understand that this is normal, but back then I really didn't.  At last,
it
            seemed to me, Zzzzz my neighbor, my new friend, was someone I
            could really talk to, and my fantasies of what she and I
would have
            together began to run away with me.  But, alas, she and I
would
            never be.

                 For there was yet another thing we had in common; Zzzzz
was
            disabled, too; and her problems seemed at least as
intractable as mine.  She
            seemed too thin to have been eating properly.  There was a
problem
            with low blood sugar, she said, and it was apparent that her
            illness and her life were out of control.  She was
irresponsible,
            couldn't pay her rent, and refused to leave.  On the day she
was to
            be evicted, the last time I saw her, she was in what could
only
            have been a manic phase.  She was high, said she wanted me
to read
            to her, then wanted me to eat dinner with her, then she just
wanted
            me.  Her bizarre mania frightened me and I
            locked my door.  Phil gave her an hour to leave and was about
to
            call the police.  My own heart was breaking and breaking.  As
we
            discussed whether to call the police, ZZZZZ
            finally left, probably spending the night on the street,
ending up
            back in the hospital.  I would never see her again; and I can
only
            hope she got the help she needed.  I would steal a final
fleeting
            chance to say goodbye.
            KZZZZZ, the one person I thought I could really talk with,
the
            one who would let me read to her, the one who didn't care
that I
            was deaf and blind, was gone; and I was devastated.  I
despaired of
            ever finding anyone like her again.  What could I do now with
all
            the lump inside my throat, with all the things I meant to
tell her?

                 And so it was, having no one left to talk with and
nothing
            else to do, that I began to write.  I didn't keep any of it.
It
            was just unreadable twaddle.  It was the way I felt, full of
            sadness and longing, roiling with re-ignited passion and
unfulfilled
            desire.  But When the pain was finally over, when the tears
at last
            were dry, I began to see that, beyond the sadness and the
pain,
            Zzzzz gave something no one else could ever take from me: yet
            another confirmation someone else could love and need me,
that
            there were also many others, still waiting for all the love I
had
            to give.  Whether she intended to or not, Zzzzz had somehow
helped
            unlock me; and one day I, too, would help set
            others free, returning the favor, completing the circle.
From now
            on, I would emulate the qualities I so admired in her.  No
longer
            would I seek the right person.  Instead, I would strive to be
my
            own ideal.  From now on, my "disabilities would be as nothing
to my
            wonder, to my joy in living, to my desire and willingness to
love.
            This would be the next chapter of my epic journey.

            While I was undergoing this latest psycho-spiritual
            transformation, my illness was finally brought under control.
The
            damage to my hearing had stopped, and although I had already
lost
            90 percent of it, my dizziness and bouts of total deafness
began to
            subside.  I was moving from place to place, unable to stay
anywhere
            for long because I didn't have enough money for basic needs.
I was
            still; writing up a storm, though it was mostly to amuse
myself
            since no one else seemed interested, as far as I knew.

                 But then one day the co-op house I lived in put on a
            coffeehouse at which anyone wishing to do so could read what
they
            wanted.  Just for the hell of it, I invited myself to it and
read
            some of my twaddle, relishing the experience of reading to
sighted
            people for the first time in, ''' in ''''''.  Then two months
later
            I had to move again, and a month later, yet again!  I was
living in
            a new co-op house, and when we had another poets' reading, I
was
            invited to be in it!  They had heart about me, they said; so
would
            I read?  I was so startled, I was surprised!  Especially when
            someone asked could they have a copy of what I had read!
Since
            everything I had was in Braille, making print copies was very
            cumbersome, and it involved getting somebody to take down my
            dictation with a pencil, which was slow and tedious.  Then a
friend

            of ours died, and at the "informal" burial service I read
some
            twaddle about life and death, of which fortunately no one
wanted a
            copy.  Until then, I wrote using a Braille writer, a machine
            similar to a typewriter, and because of the difficulty of
            transcribing my work into print for a mass audience, I didn't
keep
            most of it since, apart from my blind friends who read
Braille, I
            was mostly talking to myself.  This, however, was about to
change.

                 In 1989 we finally convinced the Texas agency for the
Blind
            that I needed a computer, which incidentally, they had claimed
was
            only a "convenience!"  It was a little convenience called a
            VersaBraille.  The machine featured an electronically driven
            (paperless) Braille display and a keyboard.  With the
addition of
            a dot-matrix printer, I had a way to compose and print
documents
            for the first time without any sighted help at all.  Now, I
could
            write letters, homework assignments, fliers, subversive
literature,
            anything I wanted with what to me seemed incredible ease and
            independence.  I also found to my delight that writing on the
            electric keyboard was much faster than on a mechanical one,
and
            that the more I wrote the more clearly I could think, and
vice
            but there were more startling developments to come.  A
year
            later I decided to buy a modem for my VersaBraille and
plunged into
            the world of cyber land and to me it was a new and truly
wondrous
            world.  For the first time I was actually able to read stuff
posted
            on public boards--and read it all with privacy and in clear,
sharp
            electronic Braille!  And there were o, so many, so many
boards to
            explore.  And these were, indeed, historic times.  As silly
Seldom
            raved and ranted from Baghdad, as the largest invasion force
in
            history poured into the Persian Gulf region, I got to read
about it
            all, via the AP press wire, in Braille.  This may seem an
            irrelevant part of the story, but it is an important part.
By
            using this new tool, I was closer to being a part of the
greater
            world than I had ever been before.  As I read the wire
service
            copy, I was, in effect, reading a daily newspaper, and my
deaf-
            blindness, so long the excuse for so much ostracism and
            browbeating, the occasion of so much anguish, isolation and
pain,
            had at last been transcended, indeed, had finally been
rendered
            almost completely irrelevant!  Momentous as these
developments
            were, there were, even greater thunderclaps to come.

                 It has been written that, "among times there is a time
that
            turns a corner, and everything this side of it is new."  For
me,
            that time came, that corner was turned on January #8, #1992,
as I
            stepped off the plane on to Stapleton Field in Denver.  I had
            decided to leave behind everything and all the world I knew,
to
            pull up stakes and move west; and that move, that decision,
would
            profoundly change my life forever.  I had come in search of
greater
            opportunity, a brighter future, a better life.  In the end, I
would
            find all of that and more; but as I walked out the jet way,
            flinching against the bitter cold, I did not know how I would
fare,
            or what might befall me in this new, and cold and alien
place.  I
            only knew what I had done could not be undecided, that I
could not
            renege on the commitment I had made, that I had no choice but
not
            to quit and meet them to the end.  Later, I would find more
things,
            new friends to help sustain me; but for now, shivering
against the
            cold, knowing that my life would be turned upside down,
facing an
            uncertain and unsettling future, I would have to do the best
I
            could with all I had brought with me--my Faith, and hope, and
            dreams.
            So began the greatest adventure I had yet undertaken.  For it
            was here, at the Colorado Center for the Blind, that I would
take
            a giant step toward inclusion in the greater world, and this
was
            one of the very few rehabilitation programs in which we, as
blind
            students, were required to live out in the world, to take on
the
            realities of daily life as an integral part of training.  In
the
            past I had been browbeaten, treated as a child or a patient;
here,
            for the first time, I was assumed to be an adult and adult
wishing
            to learn all the skills I would need in order to reach my
            aspiration, to live in the world.
            For in spite of all the "training" I received in Texas, I
knew
            I still did not have what it took to live in the world.  I
was
            afraid to cook and didn't know how to tell when a steak was
"brown"
            or chicken "done."  I didn't travel alone anymore and only
used
            paratransit services because that's what they had taught me
to do
            in Texas.  I knew next to nothing about word processors.  I
didn't
            know about checking accounts.  I moved slowly, thought
slowly, and
            had yet to rid myself completely of the image of the
helpless,
            clumsy blind man, and I knew I would have to do that if I was
to
            have any chance or claim to living a normal life.  I was now
also
            deaf, and would need to learn to use tools and techniques
allowing
            me to earn a living, travel anywhere, converse with anyone,
and
            otherwise make my way and go about my business in the world.
            Instead of being a major disability, my deaf-blindness would
have
            to be reduced to the level of a minor nuisance, an incidental
            characteristic that would determine how I do things, but not
            whether
            I can do them--not by denying deaf-blindness, but by
accepting it,
            then learning compensatory skills and an affirmative
philosophy
                 The next 13 months of my life were a whirlwind of
activity, a
            blur of strong emotions.  Although some of it was fun, much
of it
            was not, so grueling, so furious was  the pace.  It was too
fast,
            too much, too exhausting, too cold.  the sudden change in
climate
            and activity made me ill, at first, and I couldn't join in
much of
            the skiing and rock climbing, doing as much of it as I could
though
            I was in a lot of pain.  I was being pushed, tested; my
character
            was being measured.  Was I one to be counted on to keep
            commitments, finish out what I had begun?  Would I be
willing, on
            a moment's notice, to demonstrate that I believed the things
I said
            I did?  Would I give this program everything I had, and more?
In
            retrospect, I can only say I did the best I could.  But
during
            training, in the heat of the arena, I kind of lost awareness
of
            time passing, and knew only that I woke one day to find that
I was
            graduating, unbelieving I had just prepared, from scratch, a
five-
            course meal for forty people (despite the minor kitchen fire
I
            started, then put out.)  This is not to brag about myself,
for
            every graduating student does the same, although it was
without
            precedent for me.
            But even long before I graduated, the payoff had begun.
            Because I knew Braille, I was often asked to work with
students who
            did not.  As I gained travel skill, I did the same and was
once
            assigned to lead a group to a restaurant I had never been to
            myself.  As I grew in philosophy, I could share my insights
and
            personal experiences with junior students who were not as far
along
            on their journey.  Then I began to hear from people who
wanted me
            to do miracles for them, who thought that I could fix the
world--
            and these people, who wanted me to help them, were not blind!
            
                



© Copyright 2002 The Sun - All Rights Reserved
Kethry
Member Rara Avis
since 2000-07-29
Posts 9082
Victoria Australia
1 posted 2002-08-21 06:04 PM


Jamie,
this is fascinating reading but very long. May I suggest that you break it up for us sighted disabled people who have the accompanying short attention span.
Natural breaks appear to be around the change of mood between love and rejection. I enjoyed reading what you have to say.
Write on
Kethry

Here in the midst of my lonely abyss, a single joy I find...your presence in my mind.  Unknown



Larry C
Deputy Moderator 1 Tour
Member Patricius
since 2001-09-10
Posts 10286
United States
2 posted 2002-08-30 02:10 AM


Jaime,
You tell your story with such passion! Keth is right...that is a long chapter. Well worth the read but in smaller chapters others would be more willing to tackle the read.

I have worked with blind people and I have had family members that were deaf. I have not personally known a person that was both blind and deaf. I have employed the deaf and have worked with a blind person.

The challenge of non-disabled people you refer to is a painful challenge, I have no doubt. For me, I find a way, though not always easy, to have something in common to discuss. I have friends who are paralyzed and have similar challenges as yours.

But my little bit of experience doesn't scratch the surface enough for me to truly understand how overwhelmed your life has been with the ignorance of people without disabilities. I wish an apology on their behalf would matter...but it won't.

From where I stand I am compelled to acknowledge your great courage and dogged determination. But on a more personal level I want to tell you that this is very well written. Inspite of its length, the style drove me from one paragraph to the next. Despite the lines not being tidy the writing compelled me to press on.

Mensa huh? Wow. I'm reasonably intelligent but no Mensa candidate I am sure! I have felt your heartache in this read and I have felt the joy of conquering the impossible. And being here at PiPs I have found that sometimes friendships are the best relationships.

It seems technology didn't just set the able free but liverated the disabled even more. Go Jaime...you're the bomb! Larry C

If tears could build a stairway and memories a lane, I'd walk right up to heaven and bring you home again.

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