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 So far, "we" is
"me". Equality Technology is an informational site whose mission is to promote uniting the disabled with adapted computers through the use of assistive technology devices.
My name is Robert Harvey Clay. Beginning at age 15, until
now at age 54; I’ve lived with a genetic, progressive disorder
known as "Friedreich’s Ataxia" (which deteriorates my
balance and physical coordination). In addition, I’ve lived alone
for many years with an intense anger and frustration level (having
to do most things for myself); practiced computer use since 1993;
and spent six undignified, nonsensical (yet, enlightening) years of
out-and-out "incarceration" in a nursing home, where I now
reside. Most importantly, I’ve experienced and seen the
therapeutic effect computers have on those with disabilities.
That said, I have come to the deep-seated, conclusion that
"computers for those with disabilities" isn’t just a
good idea; it should be thought of as an absolute
"necessity" – depending on the individual situation –
especially for those who are "bedridden" and/or isolated.
(including living alone)
Hopefully, soon, others will agree that
"computers for the seriously disabled", is not only beneficial, but one who's time has come.
The world should realize how
important computers can be to the disabled as a genuine and much-needed medical
therapy: as essential to the well-being of the disabled individual
as any other therapy or treatment. It is vital that the
"mind" is healed in unison
with body.
For more on this issue,
please read Computer response therapy. If you are
curious why I feel so strongly about this topic please read "My
cold slap in the face"
MY INTRODUCTION TO THE
WORLD OF COMPUTING AS A DISABLED INDIVIDUAL
Recovering from hip surgery in a Floridian
hospital – having just completed an advanced college degree in
creative writing – I had pretty much decided to buy a advanced
word processor (advanced, compared to other typewriters of
the time). My old electric typewriter had died recently – after
surviving its final incident of being thrown across the room. The
new word processor consisted of a black-and-white monitor; a
keyboard; and a small printer. The word processor had spell
correction; and the ability to do most basic word-processor
functions found on earlier computers – unfortunately, that’s all
it could do. At three-hundred-ninety-nine dollars the
black-and-white word processor seemed like a bargain, compared to
one-thousand dollars or more for a new computer (monitor and printer
not included).
To my delight, two unsuspected visitors walked
into my hospital room carrying an armful of computer
pamphlets. Their self-assured mission was to convince me to hold-out
for a computer, instead of investing in a soon-to-be-obsolete (and
most likely thrown across the room) piece of technology. My two good
friends, Stan and Terri (soon to become a married couple) knew that
as my progressive-disability worsened my adeptness and needs would
change, and the machine behind my keyboard should be able to grow
along with my needs, too – making a computer a much better
investment. With a computer changing the hardware and
software would render this growth possible – not to mention, the
unending variety of other uses facilitated by the PC. When they left
my room, I was so thoroughly convinced that Stan and Terri were
right; my plans to buy a black-and-white word processor were
replaced with “researching the different computer brands
available”; plus, looking into the functions each would facilitate
in the future.
Soon after, a wonderful elderly couple ‘Glen
and Ruth’ – who had been visiting my apartment, and helping me
with nearly everything – took me to a “computers for the
disabled” open house, at a nearby school for the disabled. (This
was in the early “1990’s” before computers had developed into
a mainstream consumer product – meaning they where expensive as
hell)
When we arrived at the show of new computers
for the disabled, I was absolutely blown away by the software and
devices available to make computing easier or possible for those
with disabilities. Surprisingly, in one room of the building, there
was a pre-school classroom set-up with a roomful of
close-to-the-ground computers – a few, complete with tiny chairs.
It was used on weekdays to familiarize kindergarten age,
disabled students with the wonders of computing (the event we were
attending was being held on a weekend).
Realizing the myriad of things that could be
accomplished with a properly equipped computer; my eyes were open to
the unlimited possibilities available in the near future –
especially for the handicapped. Without a doubt in my mind, I was
eager to become computer savvy. Soon, the days of retyping a whole
page because of accidentally hitting a few stray keys were soon
going to be over (which was often the reason for throwing the
typewriter across the room).
At the time, CD-ROMs and multimedia computers
were a brand new technology: the idea of having an entire
encyclopedia; dictionary/ thesaurus; or just about any other book,
complete with sound, at your fingertips (and on a monitor screen)
was mind boggling – primarily, because my poor physical
coordination made handling books extremely difficult (and soon,
virtually impossible). Priced at over two-thousand dollars (again, without
the monitor or printer), a multimedia computer was definitely out of
my price range – at the time I was surviving on a monthly Social
Security Disability Income check from the government. However,
when I truly needed money, I usually found a way to dig it up.
Desperate to buy a new multimedia computer, I
decided to sell my gradually-acquired 35mm camera outfit and
darkroom set up – which, interestingly, has since been made
obsolete by digital cameras; computer “darkroom” software; and
photograph-quality computer printers and paper. After selling the
photographic equipment, I was only able to raise about eight-hundred
dollars. My good friends and helpers Glen and Ruth knew I needed to
get a computer, and offered to finance my endeavors. Soon, I was
able to buy a new multimedia computer fresh from the factory (along
with a monitor and printer). [And yes, I did pay them back:
accordingly, my lunch consisted of a big plate of cheap potato
chips; for awhile anyway.]
When my new computer arrived via UPS; Glen and
Ruth helped un-box and assemble it. When the computer was set up,
and ready to go, I had no idea how to make it work. Too heavy to ever
throw across the room, I did what Glen suggested, and read the
manual. Soon, I was making it “do things”: fortunately, newer
computers are much more “user friendly” and much cheaper too.
Though, considered
relatively obsolete by some, my newer computer has capabilities
incomparable to my older constantly-updated computer, at any price!
From the first version of my original computer
bought in 1993, to the relatively advanced piece of technology I now
own; constantly, engrossing myself in computer operation, has
completely convinced me of the unmistakable benefits computers hold
for those with disabilities – so much so, as to spend the
remainder of my life devoted to bringing those who are disabled
together with computers. I am writing this from a small computer
desk, in a “nursing home”; with a major disability; on an
un-adapted keyboard; at an incredible age of “51”, in the year
2008. Why; because I’ve discovered the amazing therapeutic
properties of owning and using a computer.
The total mental absorption afforded by my
computer – combined with the ability to achieve what practically
anybody else can – causes me to completely forget what I can’t
do, and compels me to concentrate on my abilities (see,
Computer Response Therapy) My disability, known as “Friedreich’s
Ataxia”, hasn’t stopped me from working; communicating; drawing;
building award-winning websites; writing; or doing endless other
things – away from the computer I can do very few things without
the help of other people.
So, if you’re disabled, stop spending the
majority of your time watching the “boob tube”; use your time
wisely; and join the “interactive” world of computing – I
guarantee you won’t be sorry. And, no matter how severe your
disability, a computer can likely be adapted for your use – there
are an incredible number of individuals who are totally blind;
quadriplegics; bedridden; or have other disabilities who are
creating artwork; surfing the internet; creating websites; or are
finding an unlimited number of things to do with their specially,
adapted computers.
COMPUTERS:
A CREATIVE OUTLET FOR ALL
Living alone for
many years with a major progressive disability had me searching for
a new creative outlet. Drawing; painting; and photography were getting
difficult and awkward
(all things that had previously fascinated me). Undeniably, a clear sign my gradually
deteriorating physical coordination was taking its toll. For years,
I floated through life; constantly pondering “What I’m I
supposed to be doing?” At the time, computers (for home use) were
expensive toys; mere “alluring-magnets” for my young
nephew whenever we visited department stores.
Still living alone,
in 1993, I got my first multi-media computer; it didn’t take long
to come to the conclusion, “MAN … this is what has been
missing from my life – now I can do some of the things others
can do!” Thankfully, now, the lower cost; the increased
availability of devises to enable the disabled; the advanced
reliability; and the incredible number of added features, make a
computer a true godsend for those with disabilities – whether or not
they are seeking a creative outlet.
In contrast, my
older sister “Vickie”; had the same disease as I; spent much of
her childhood in a facility for children; and over twenty years in a
“nursing home. Being ten
years older than I, my sister hadn’t experienced the uplifting and
mind-stimulating effect of a computer. While in a nursing
home, she once told me, “I want to do something ‘important’
with my time, like take classes in college” (which is now
something that can be done online). Practically immobile at that
time, my sister “Vickie” was very “unhappy” with her life,
and eventually died unfulfilled.
Years after my
sister had died, my disability advanced to the point where I felt
living alone was a detriment to my own safety (falling on the floor
was now a one-way trip: getting-up again was virtually impossible).
So, entering a “nursing home” at the age of forty-six seemed to
be the appropriate avenue for me – something I had been dreading
for years.
Leaving my computer
behind while entering a nursing home for the first time was
extremely difficult; considering, every night since 1993, most (if
not all) of my time was spent working at my computer. It wasn‘t
till three weeks after I entered the nursing home that my computer
was shipped: those three weeks seemed like three months. Staring at
the albino sea frog, daily, in the nursing home’s fish tank
quickly became the highlight of my day. During those three weeks, I
realized how disabled I was: trying to read a book and realizing I
couldn’t turn the pages; trying to draw a sketch of the albino
frog and realizing I couldn’t hold a pencil and pad; sleeping in
the hall in my wheelchair; sleeping in front of the large screen TV
in the "resident's” lounge; and getting “pissed-off” at
everybody who worked at the nursing home (something I still do,
because most employees invariably ask me when I’m at the computer, “What
game are you playing?” – at the time, I’m actually working on
my fifth website).
After being in the nursing home for 3 years, I expressed
interest in Social Services’ first computers, they were quick to
tell me, “These computers aren’t for fun – they’re for
serious work.” This made me hopping-mad, considering, since 1993
“serious work” is typically what I used my computer for –
disability information on several award-winning websites;
photography, and picture restoration; drawing and painting; writing;
and email to name a few – at the time I probably knew more about
computing than all-of-them put together (The employees in Social
Services were all new to computers – at least for “serious”
work). I can only assume that because I was disabled, my
computer (to them) was just a “toy” to amuse me!
Don’t get me
wrong, for some individuals playing games on the computer can
be an extremely powerful tool for maintaining an individual’s
psychological well-being, and interest in life itself. From the
first day I arrived at this nursing home, till now, my roommate has
been a very quite individual named “Tom”.
On the first day, I
arrived and someone rolled me into my new room. Tom (my new roommate)
was sitting in
his wheelchair playing one game over-and-over on his computer.
When I tried to begin a conversation with him, Tom was so deeply
absorbed in playing Solitaire he didn’t turn his head, or say a
word. Realizing how engrossing a computer can be (not having my own
computer yet), I went down the
hall and watched the albino frog for a few hours. This happened
early in the afternoon. Later, it was time to return to our room for
dinner: when I arrived, Tom was still playing Solitaire. Soon after,
two aides came in our room carrying our trays of food. When one of
the aides tried to feed Tom, she had difficulty prying Tom’s
attention away from the computer to feed him. Eventually, the aide
had to turn the computer off to be able stick a fork-full of
macaroni and cheese in his mouth!
The next day,
Tom’s mother came to visit with him, and I asked her if Tom was in
an accident. She told me Tom has a massive brain tumor: Meanwhile,
Tom was at his computer playing Solitaire. Later, after Tom’s
mother had left, I began to wonder what was so captivating about
Solitaire to a guy with much of his brain damaged by an active
tumor– “was it the bright green background … being able to
move the cards around with the mouse?”
Recently, with Tom
being my roommate for almost six years; he has since lost eyesight
in one eye, and for the most part his hearing: yet, he is still
playing Solitaire all day long – stopping only to eat (every day,
the aides take Tom to the dinning lounge [were we eat now]: then,
before the food comes, he sneaks back to play – you guessed it –
Solitaire).
Almost totally
deaf, Tom hasn’t talked much from day one; however, not long ago,
he shocked the crap out of me. I heard someone mumbling behind me in
our room, it was Tom thinking out loud; repeating and planning his
next card move. Not playing Solitaire myself, it sounded like a very
complex gathering of logic emanating from my “brain-eaten
roommate!” All those years … all those days … all those hours
… Tom knew exactly what he was doing! I can only assume Tom was
using the small amount of his brain that was unaffected by his brain
tumor to master Solitaire.
Tom’s mother and
I are probably the only two people in the world that senses my
roommate’s need for “his computer” and Solitaire. In the six
years I’ve known Tom; my roommate’s computer has broken down a
number of times. When Tom doesn’t have a working computer to play
“his” game on; he seems to go into a “depressive” state: he
hangs his head; sits by his computer; tries to turn it on every five
minutes; and wants to go to bed every time someone walks into the
room.
When I try to convince anyone here at the nursing home how
important Tom’s computer is to him; hardly anyone pays attention.
When I try to explain to just about every staff member I see,
“Someone needs to call my roommate’s mother, who’ll get his
computer repaired immediately” – with nobody taking me seriously, it
might be over a week by the time his mother arrives. Meanwhile, Tom
is suffering needless misery. When Tom’s mother finally does come to
visit, she is very upset to find Tom’s computer is not working. This
unforgivable, lack of sensitivity still has my blood boiling!
A few years ago, I
met a very pretty, young blind woman here at the nursing home;
“Stacey.” One day she entered my room, and asked me if I could
get her a computer: Social Services (down the hall from my room)
must have heard me talking about “free computers for those with
disabilities”. At the time, Social Services had no idea what I was
talking about; so, I explained to Stacey that “I’ll see what I
can do.”
Unfortunately,
Stacy left the nursing home before I could help her get a computer:
but happily, Stacy’s question gave me the idea to research the
subject of “computers for those with disabilities” on the
internet. In the process of examining the topic on the internet, I
was amazed to find enough material for a large website. As a Result,
I spent the next two years piecing together a website on
only one subject: “computers for those with disabilities.”
In the middle of
building my new website, I connected (by email) with an organization
that was distributing refurbished computers to the disabled, I asked
several disabled friends here at the nursing home “if they wanted
a refurbished computer at no cost.” I was surprised to find, none
of them knew “computers for those with disabilities” programs
exist!
Each disabled
resident at our nursing home sounded exited about the prospect of
getting a computer for nothing. I then explained they needed to get
their “assigned doctor” to write a short letter stating how
their life would be improved by owning a computer. One of them
returned with the excuse, “I don’t have the room for a
computer.” A strange reaction considering, our nursing home allows
room for quite a few pieces of furniture. Each friend I had asked
returned with a weak excuse of “why they couldn’t get a
computer.”
Suspecting “a
letter from their doctor” might be responsible for my friends’
peculiar explanations of “why they couldn’t get a
computer”; “Getting to the bottom of this” seemed appropriate.
My next move was to tell my doctor I needed a letter from him
to get a computer.
After waiting over two weeks for my doctor to
make his customary twenty-second “hello, how are you feeling”
visit, I asked him about the “letter.” My doctor’s reaction
was, “Give me the name of the organization in writing, and the
next time I visit (next month) “I’ll have them ‘checked out’
to make sure they’re legitimate.”
The following month, I was
asleep, and the doctor “didn’t want to disturb me”, and left
without waking me.
Later, when I tried to call the doctor, the operator at the hospital
asked me if it was “a medical emergency”, and said, “If it
isn’t, I couldn’t disturb the doctor.” My initial reaction
was, “I guess I don’t really need a second computer?” Then it
hit me, “HEY, what the hell am I thinking!? [If a person
lives in a nursing home why does that person need a doctor’s
letter to get a computer, anyway!? I guess they think all disabled
people in nursing homes are faking their disability!]
Frustrated by
trying to get a “letter” from my doctor, I was not ready to give
up. I thought it was time to take action.
"MY COLD SLAP IN THE FACE"
WHY I’M NOW DEVOTED TO COMPUTERS FOR THE
DISABLED:
After collecting a massive amount of information for my newest
website, I began to assemble what I thought would be a wonderful
addition to the excellent websites already available on the subject
of "computers for the disabled."
Days before I had planned to upload my new website
"Computers for those with disabilities" (a two year
project - now lost), the electricity started to go "off and
on" every few minutes in the nursing home where I’d lived for
the past five years. Unfortunately, my computer was running at the
time, and I wasn’t able to get to it to turn it off. The nursing
home was testing the emergency electricity generators again. Only,
this time, they didn’t announce ahead of time, "Turn off all
computers, we’re about to test the generators" – something
they had always done before.
When I returned later to work on my website and turned on my
computer, nothing happened, and nothing seemed to be working – I
figured it must have blown a fuse, or some Good Samaritan must have
unplugged it when the electricity started to go "off and
on". Not realizing it at the time, the entire electrical system
in my computer had been totally "fried". I'd lost ten
years of data; my previous websites, including my newest one
"Computers for those with disabilities"; hundreds of
dollars of downloaded software; thousands of dollars of computer
upgrades; and the use of my computer. I felt sick to my stomach.
After accepting my loss, I decided to go to the nursing home’s
administrator; explain my ordeal; and hoped they would offer to
replace my computer with a new one: after all, it was their
fault – or so I thought. After talking to the administrator a good
fifteen minutes, with no success, I realized it was up to me to ask them
to replace my computer. The answer I got from our nursing home’s
administrator was, "No, I don’t think we can do that."
Seeing as how I’d just lost ten years of data; thousands of
dollars in upgrades; not to mention ten years of my life, I managed
to keep my cool. My next thought was to ask the administrator if
they would help me search the internet for organizations that give
new or refurbished computers to the disabled. (Regrettably, even
though I had just built a website on this very subject; I’d made
the unfortunate mistake of not printing out their phone numbers.)
The administrator said, "Searching the internet is something we
can do to help you."
The administrator of my nursing home immediately explained my fate
to the Social Services department at my nursing home (whose office
is across the hall from the administrator’s office). Without my
connection to the world (the internet), I was exceedingly conscious
of how cut-off and lonely it felt to be isolated in a "nursing
facility" without a computer. So, I was really looking forward
to calling one of the associations who could help me get a new or
refurbished computer. Luckily, I was able to remember the names of a
small number of organizations that could help me.
All I needed from our Social Services department was the
organizations’ phone numbers, off their websites, so they could
help me call and get a computer. The day before, they told me they
would do it, but the next day when I returned Social Services said
they couldn’t. The excuse my "nursing facility" gave me
was, "We don’t have the time to make an exhaustive search on
the internet!" It would have taken only a few minutes to locate
the organizations’ websites: I had the "exact" names of
the organizations; the results’ on the search engine would
probably have been "the first ones on the list." When I
tried to explain why the search wouldn’t take long, the person I
was talking to, said rudely, "Excuse me, I have another client
to talk to." I felt like I was just told to "get
lost."
Before leaving Social Services that day, I thought. "I’ve
got to find someone who will help me." After the counselor was
finished talking to the other client, I asked the counselor to help
me find an outside social worker that would help me find these
organizations. The counselor replied, "I don’t think
contacting an outside social worker is necessary." Immediately,
I thought, "Without help, I’m ‘sunk’." (My speech is
indiscernible to some on the phone, and I couldn’t push the
buttons, so naturally calling by myself, even if I did have the
phone numbers, was out of the question. Plus, I had no relatives;
friends; or family in that area of the country to help me.)
The next day, I tried to convince the folks in Social Services
that the government-funded "Vocational Rehabilitation" had
a little-known program that supplies new computers to individuals in
a nursing home who are disabled – "If, the computer will
improve their client’s life." The counselor in Social
Services told me, "VR won’t give you a computer, unless you
are going to take classes." I’d found my information on that
subject just a week before, on a government website, and I knew I
was right – but Social Services refused to have the VR counselor
come see me. So, I went to talk to one of the residents of our
nursing home who got a computer on this "improving your
life" basis, and asked him if he was required to "take
courses." He told me he was asked after he got a new
computer set-up with voice recognition; a special miniature
keyboard; and a printer, if he wanted to take classes: then, he told
me he never did take a college course. When I went back to
Social Services and tried to tell them one our
"resident's" got a computer from VR without taking
classes, they said, "they couldn’t discuss another ‘resident's’
activities."
Feeling down and defeated, I began to sit outside my room in my
wheelchair staring into space all night. Being a fighter, I soon
began to make plans, in my head, for stopping this ridiculous
underestimation of the value of "computers for those with
disabilities."
Next, every chance that came along, I talked with my nurses about
my dilemma. I repeatedly asked the ones with an "online
computer" to help me contact one of these organizations, and
explain my problem. Most of them said, "Yes, of course I’ll
help you": but, no one ever did – they all repeatedly
returned the next day, and said, "They forgot."
Meanwhile, (no doubt tired of me bugging them) Social Services
found a repair service that would fix my computer at a discount rate
(at my expense, of course). However, I was reasonably sure my
computer was completely "dead." Eventually, the repair guy
showed up, and took my computer to his shop (which seemed to take
forever). Later, he returned to tell me that my computer had
"kicked the bucket", and there was "nothing he could
do." That news didn’t surprise me, but I was still
devastated.
Nevertheless, I was still sitting in the hallway every night, as
someone described, "With nothing to do." Our nursing home’s
"Activities Department Director" became aware of my
dilemma and was kind enough to loan me an older computer.
Disappointingly, the modem didn’t work, so I still couldn’t go
online. It was a small, slow computer, with a dinky hard drive –
word processing seemed its strongest feature. So, pecking one letter
at a time, using an ordinary keyboard, with no special adaptive
input devices, I began to write a book that would hopefully appeal
to the general pubic -- "facility Blues." … I had hoped,
this over-exaggerated (but somewhat accurate) satirized
interpretation of my earlier life would catch-on, and this book
would help fund an organization of people who agree with my views
concerning the importance of "computers for the disabled."
While writing "Facility Blues", I stayed offline; had
my phone uninstalled; and began to save my measly $52 a month that
our "kindhearted" nursing home gives us (with no
cost-of-living increase, I might add) to buy a brand new computer.
Two years after my old computer "kicked the bucket", I’d
finally saved enough to buy a new computer. Then it was shipped to
my room, and sat in the box unopened for three weeks. All this
occurred after asking my "nursing home" to set it
up for me. Happily, a kind "nurse’s aid" offered to
set-up my new computer for me: it only took ten minutes to put it
together!
I am not saying these things to "point the finger of
blame" at anybody in particular: but at a time where computers
were offered at no charge to those with a disability – there was
no acceptable excuse for no one paying attention to my pleas
for help!
Later, I started using my new computer to finish and correct my
book. Three years after my "cold slap in the face" my book
was finally finished. I’m also saving for another new computer (as
a backup), to prevent this extremely depressing "isolation from
the world" from happening to me in the future, and to help
safeguard my "computers for those with disabilities"
efforts. It is my sincere hope; other "incarcerated"
disabled residents in health facilities will be able to avoid this
"injustice" in the future.
“THIS ‘UNDERESTIMATION’ OF THE IMPORTANCE OF
‘COMPUTERS FOR THE DISABLED’, MUST STOP.”
“(IF MY TV BROKE DOWN (IF I OWNED ONE) SOCIAL SERVICES WOULD
PROBABLY HAVE BEEN QUICK TO HELP ME)” BC
a.
Help make “computers for the disabled” the norm.
Computers
adapted for the seriously disabled are indeed, an essential,
assistive therapy. These computers (specially equipped with
alternative input/ output devices) should be freely available in the
United States
and other developed countries. The
therapeutic benefits amount to a powerful, mind healing, self-esteem
building, panacea, and should never be overlooked as a viable
medical treatment.
Doctors; nurses;
therapists; social workers; nursing home staff; and other closely
involved professionals should be required by law to recognize the
significance of "computers for those with disabilities."
And if need be, help qualified individuals receive and maintain
these adapted computers. Professional caregivers should be obligated
to inform the disabled individuals (and their families) of:
(1) The life-improving benefits of an adapted computer
(2) The eligibility for a free or low cost computer, either
refurbished or new
(3) The organizations that help to provide computers;
adaptive devices; and training
Nursing
facilities should be required by law to employ a qualified
individual who trains residents in the use of adapted computers and
the internet. In addition, it is of utmost importance that a person
who has knowledge of computer repair is readily at hand. In essence,
I call this "Computer Response
Therapy."
Help us
make "Computers for the disabled" lawfully recognized as a medical necessity (donate
a few dollars today)
If
you agree with my views concerning the importance of “computers
for the disabled.” Or would like to change or add wording to the
above, write me a short email.
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Help insure
that people with disabilities get adapted computers: contact your
congressperson online in a few simple steps. 
