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WHO I AM and WHY I’M HERE
My name is Sharisa Joy, I’m
almost 25 years old, and I am here today to talk to you about
autism and to learn what you think about it. I learned at age 13
to use keyboards to communicate and was able to go to regular
school starting at age 15. I am now a senior at
Denver
University majoring in
Psychology and due to graduate in November. When I was younger,
I had no way to communicate and people thought I was "hopelessly
retarded". Before I started typing to speak, I couldn’t express
myself or respond in any acceptable way… and to all outward
appearances, hopelessly retarded is exactly what I was… but:
"NOT BEING ABLE TO SPEAK IS
NOT THE SAME
AS NOT HAVING ANYTHING TO
SAY!!!!"
People should never be seen or
treated as labels. I know the horrible hurt of cold, cruel
stares that shout "YOU’RE RETARDED!" louder than any WORDS could
say to or about my "special" friends or me. People sometimes
look right at us and speak badly about us as if we don’t even
exist, let alone understand! But most of us do understand and
are awfully hurt by mean words! Why can’t people allow us
"non-verbal" people to be people rather than trying to depict
and keep us as some kind of non-communicative, unthinking,
unfeeling "vegetables?"
I WANT THIS TO
STOP
NOW!!!!!
CHANGING HOW PEOPLE THINK
It’s good to know people can
change their perceptions through contact with new people and
ideas. It is, on the other hand, sad that some people go through
life with the blinders and earplugs of bigotry firmly in place.
It’s even worse when they try to force their beliefs on others;
innocent people get irreparably hurt.
Even now, there are times that
the way I look and act causes people who don't know my true
brainpower to think I’m "retarded." The only answer I see to
this "tunnel vision" is to try to teach others how to see past
surface behaviors. The benefit of the doubt is the best gift we
can give to others... I've even learned to give it to people who
pick on me! What I try to take with me everywhere is my
one-of-a-kind example of what’s behind what people think they
see – if they open their eyes, ears and minds to what is
truly possible. Even if someone is "challenged," people are
always people first and most of all. We all deserve fair
treatment as a right rather than a "gift." People only
need be themselves and let themselves know me for me to feel
comfortable, safe, and trusting enough to be myself and let
myself know them. But it wasn’t always this way because I
have AUTISM! That’s my biggest personal wall of all.
WHAT IS AUTISM?
While no one
is completely sure what autism is or what causes it, there are
many ideas. What I can say for sure is that autism is very scary
to most people and a puzzle to researchers and even to
those of us who have it. It is, in its simplest terms, a
mysterious disorder that affects language, thought, mood,
feeling, and even movement.
BEING A CHILD WITH AUTISM
People always ask me how it
feels to be a child with autism. I can only tell you how
it felt and what it was like for me. As a young child
with autism, I created a complete inside world in order to
protect myself. I still have pieces of that world. At age two, I
was a sad and unresponsive little girl. I stopped talking, chose
to be alone, and wouldn’t even look at people. I created
imaginary friends to guard and shield me from what I thought was
dangerous. They kept me company and made me feel safe by giving
me something to focus on rather than what frightened me. I
stopped being "Spontaneous Sharisa" and became "Automatic
Androida!" After a while, I didn’t even really know I was doing
that – it took control of me. I spent more than 11 years with no
face, voice, or name to call my own except those that existed in
my mind!
I never totally lost myself,
however, because my dad helped me hang on to it by letting me
hold on to him and knowing what the real me once was and still
could possibly be. I see that in his eyes – I always have. Help
isn’t only something physical – it’s all-embracing
and all-loving! That’s why I have been able to re-enter
the "outer" world as much as I have and walk the tightrope
between the world of autism and the world of nearly everyone
else. I try to explain each side to the other in order to reduce
the many fears and prejudices that separate us.
It’s time for so-called "normal"
people to realize that those who are different from them in any
way are still people! I, for one, am here to STAY and
will fight prejudice of every type in every possible way!
BEING A GROWN-UP WITH AUTISM
I am also
constantly asked how I feel about being a grown-up person with
autism. I have many feelings about this. Please let me explain:
It is far too often said of
people with autism and other disabilities that we "have No
imaginations." Imagine someone saying that about you?!
Imagine how it would make you feel! Horrible, right? I
won’t pretend to speak for or represent all autistics,
but I, along with several others I know, have extremely
vivid imaginative powers and enormous creativity.
It is, in fact, imagination
alone that prevented me from shutting down my "self" and
shutting out the world entirely! It was and is my imagination
that enabled me to create those defenders and protectors within
my own mind that prevented me from losing that very mind itself.
It was imagination that gave me
a mental picture of myself communicating by typing. It has
helped me write poetry and prose filled with graphic images. It
lets me hear words and music I write "inside" my head before
they are typed, printed, written, spoken, sung or played, and
given "lives" of their own.
It has let me dream and
daydream, hope and pray, plan, succeed, and live; and visualize
a very bright future where none had seemed possible. It
is imagination and creativity, hope and faith, and lots of hard
(but satisfying) work that will always be there to see me
through.
In my ongoing effort to prove
I’m real and to "fit in" everywhere, I have changed nearly every
part of my personality and behavior. I truly doubt that very
many other people could do this. I have never, ever given up
trying to be more like so-called "normals" while clinging to the
one thing that makes me most unlike them – AUTISM!
I value my AUTISM above all else
with which my life has been "gifted." While I also have cerebral
palsy and epilepsy and these are wonderfully special to me, and
I often think being "unable to speak" is a blessing in disguise;
none of these remotely match the total delight of being
AUTISTIC.
I can see and hear people
reacting to this by wondering "Is she serious or is she pulling
our legs?" Well, wonder no more! I mean everything I have said
and am about to say.
I used to view my AUTISM as a
major CURSE! I thought IT caused me to be withdrawn, weird, and
very unacceptable.
I was wrong, because I have
since found out that these are "behaviors" that I can usually
control.
I’m not a "prisoner" of
anything I refuse to LET control me. If I fight and never give
up not only can I win, but I also help others win by the example
I set and by explaining myself.
If I had given up, the "DARKNESS
and SILENCE" that imprisoned me would have been the only
"winners". My life and I would possess little or no meaning, and
the true blessings of my AUTISM would have gone unnoticed and
died unmourned.
THE GIFTS OF MY AUTISM
What do I see as the gifts that
autism has given me? My incredible intelligence, unique
insights, talent for improvisation, creativity in writing and
music, wonderful memory, and awesome ability to teach and help
others understand... I believe all of these are valuable
"side-effects" of my AUTISM that far outweigh all of the
"negatives". I am who I am at least partly because of
what I am, and that includes AUTISM and how it has gifted my
life.
HELPING US COMMUNICATE
I’m also very lucky I can hear
well and that I have communication devices that make it possible
for me to "speak." I believe these should be made available to
all people with communication and/or hearing impairments.
Children should be given them and trained how to use them at the
earliest possible age, and similar training should be given to
family members, friends, classmates, teachers, and anyone else
working or playing with them.
It’s tough enough to live in
total silence without anyone or anything making it harder in
any way. Technology, education, increased awareness, and
understanding are the best answers to making disabilities
less disabling. Anyone who is deprived of these opportunities is
left without both the right to communication of their own and a
life that is better than any they might have without
communication. The only real answer is to enable;
anything less only disables.
These days, I have unlearned
most of my autistic-like behaviors and am much more open and
friendly and like being with people. College has helped me learn
to do this more and more. It has definitely been an incredible
roller-coaster ride, but at least now it’s mostly fun instead of
frightening, and I believe it will continue to be! Thank you all
for listening today and for seeing and accepting me as a real
person instead of just some "autism expert!" Thank you also for
joining me on my journey and letting me share my gifts with you
and allowing me to explain and educate!!!!
Please feel free to write to me
at:
Sharisajoy@aol.com
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