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THE BEACON for [dis]ABILITY™
World Association of Persons With Disabilities [WAPD]
A Non-Profit, Non-Political-Association
The Beacon of Knowledge & Refuge for the World's Largest Minority
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December 7, 1998 BOOKMARK: <http://www.wapd.org>
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"Let us be among those who renew this world
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_ Zarathushtra.. about 1738 B.C. _
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IN THIS ISSUE:
Big Thinking Precedes Big Achievement
1. LETTERS TO EDITOR..
2. A Mom trying to do too much? & A WAPD Director Responds..
...ALERT!
3. Resources
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A. Disability Social History Project Web Site
B. Achieving Together What We Cannot Alone
4. Ability Magazine
5. Worlds Largest Deaf Party!!!
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BIG THINKING PRECEDES BIG ACHIEVEMENT...
If you don't have a dream,
how are you going to make it come true ?
High achievement takes place in the framework of high expectation.
You'll always hit what you aim for in the long run.
Why not aim high ?
Have the courage to follow your dreams.
It's the first step towards your destiny.
The empire of your future is in the empire of your mind.
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IF IT'S GONNA BE IT'S UP TO ME/YOU !
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To Whom it Concerns:
I'm a mentally disabled disability activist in the
state of Virginia. I belong to no organizations although
I currently assist Vera Sharav of Citizens for Responsible
Psychiatry and Research. Many of you may primarily address
accessibility issues and may have little knowledge of the
current nature of research done on the mentally disabled
in the U.S.
I can attest to the fact some of the research which has
occurred and still is occurring is unethical and often
done without the informed consent or understanding of the
disabled research subject. It has become standard
psychiatric research to inject ketamine (related to PCP)
into schizophrenic research subjects and the results have
often been inducement of "temporary" psychosis or an
exacerbation of symptoms. This information can be accessed
through CRISP database among others. It has also become
routine to conduct "washout studies". Here a mentally
disabled research subject who has been put on an
antipsychotic medication and stabilized is taken off
the stabilizing medication (not gradually but immediately)
and the results are scientifically collected.
In the past UCLA protocol a washout study resulted in
the suicide of one of the research subjects. Despite
criticism from a few groups and handful of disability
activists, the National Bioethics Advisory Commission
has recommended that research be done on mentally
disabled research subjects who can't give consent and
they have refused to issue a moratorium on relapse
producing experiments and washout studies. At the same
time the state of Maryland (out of the Attorney General's
Office) has crafted a statutory proposal which would
allow research on human subjects who can't give informed
consent and the research wouldn't necessarily have to be
therapeutic or related to the incapacitating condition.
NIH and NBAC are located in Maryland. The issue of
national research on human subjects has enormous import
for the future. We live in an age when molecular biologists
are unraveling the DNA, fetal tissue and embryo research is
done, human cloning is on the horizon, and gene therapy and
genetic engineering are done. At the same time,
pharmaceutical companies, academic research facilities, and
the government form a powerful confluence of interests
where literally billions of dollars are awash. There is an
increasingly strong tendency to regard the research subject
as a commodity to be used rather than a human being who has
rights. The current research mindset in the U.S. points
towards the "recruitment" and utilization of human
research subjects who are incapable of providing informed
consent. This will have broad effects on many disabled
segments of the population, not just the mentally disabled.
I urge disability advocates/organizations to take up this
issue and to make it an important priority. There are many
issues which effect the disabled and require attention.
This is an issue which is largely hidden from our view
but will have telling effects if gone unchecked.
For further information please contact me.
Respectfully,
Michael Ragland
<[log in to unmask]>
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IF IT'S GONNA BE...IT'S UP TO ME
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Sandusky, Ohio - Register Newspaper
Sunday, November 15, 1998
Our opinion -- A MOM TRYING TO DO TOO MUCH?...
There was a movie where one character warned another:
A person can lose a lot if they let their pride get in the way.
That's the predominant feeling when you consider the case of
Sandusky's Kelly Dillery.
Dillery is the wheelchair-bound woman battling the local legal
system, which has charged her with child endangerment for a
July 30 incident.
Her crime?
Dillery strapped her 4-year-old child to her wheelchair and
navigated the streets of Sandusky. It is something she
frequently does when she goes places -- the store, to visit
friends, etc.
Dillery's street escapades, which have her and her daughter
wheel-to-wheel with vehicles, have gained her the attention
of local officials. In Dillery's mind, she is doing all she
can to be a mom.
Many people support Dillery. But police officials and many
drivers believe she is going about it dangerously.
For us and for many callers to the Register this week,
the issue points out many areas worth questioning.
Dillery claims she's forced to the streets because of
inadequate sidewalk and pedestrian pathways. There's
truth to that. Sidewalk quality is inconsistent anywhere.
If they even exist, often they are uneven and cracked.
And pedestrian lanes along local roads are a newer concept,
and where they do exist and are of adequate width, often
they are pooling areas for roadkill and other scraps.
Our local transit system has found a need it cannot meet.
Sandusky Transit System is a valuable service and provides
a lot to people in need. The Dillery episode exposes a gap
in what STS can do. It deserves a look.
But our biggest concern is with Dillery, and it's hard to
say this about someone who is trying to do the right thing.
She wants to be a mom. She wants independence. She doesn't
want to be a burden on others.
You have to admire her for that. Many more of us need that
same courage.
But her practice is simply not safe. While we would encourage
her to drop the practice entirely, we offer these basics if
she wishes to continue what she's doing.
Her wheelchair should be well-lit, and laden with reflectors
and flags to make motorists aware of her presence -- day or
night. Her daughter should wear a protective helmet and ride
in an enclosed three-wheeled carriage behind her wheelchair.
These are essentials for any road pedestrian. It should be
the same for Dillery.
(End of Sandusky Editorial)
WAPD Director Jill Jacobs Responds...
(Faxed to the Sandusky Register)
I have to start by saying that I am confused as to who the
'we' in this editorial actually are. Or is that is? Well,
no matter. What I find even more baffling is that, for some
reason, Sandusky's 'we' feel 'we' have the right to suggest
what a Mom with a disability should and should not do, even
when these suggestions (bike helmet and the enclosed
three-wheeled tow-behind) are not, according to Sandusky's
Assistant Chief of Police, laws. In fact, these recommendations
are not made to Moms on bikes, as a matter of course.
What's more, nobody that I spoke with in Sandusky can recall
transporting a child on a bicycle, in a stroller, in a wagon,
(or any other sort of open vehicle with wheels!)becoming hot
enough copy to get editorial space in the local newspaper.
Regardless, 'we' feel compelled to make suggestions to a
Mom who happens to have a disability... and hey... am I the
only one who gets that "as long as she is living under my
roof" feeling here?
In reference to the many callers 'we' refer to, and the
'predominant feeling' around town, well… I just cannot help
but wonder… Since Miss Dillery did not go public with this
story, why has this become a community issue, much less an
issue of righteous public examination? Perhaps those folk
who identify themselves as members of the 'predominant
feelers' circle' ought to turn their scrutiny inward. Could
there possibly be a predominance of prejudice?
Sandusky's 'we' waxes judgmental on the subject of pride,
and preaches pedagogic on courage. I would venture to guess
that Ms. Dillery is, indeed, proud and courageous. One might
note, however, that Ms. Dillery's courageous and proud bearing
is no different than the courageous and proud essence of any
mother who recognizes her innate ability to nurture.
Disability has nothing to do with it. This woman is simply
mothering her daughter with grace, dignity, and pure beauty.
Sandusky's 'we' claims that Ms. Dillery "… can lose a lot if
she lets pride get in the way". I find it curious that 'we'
deem Ms. Dillery's pride to be of the foolishsort, rather
than of that darn tootin' variety.
Kelly Dillery takes her daughter to the library. She takes
her daughter to the park, to the grocery, to the post office,
to pay the bills, to fun places, to tedious places, to
educational places. Ms. Dillery is a Mom. Carrying her
daughter, secured with a safety belt, on her lap, is one of
the ways this Mom chooses to manage the responsibilities of
Motherhood. It is called taking care of family business.
Sandusky's 'we' chose to refer to Ms. Dillery's outings as
'escapades'. Escapades? The American Heritage Dictionary
(3rd edition) defines 'escapade' as "a reckless adventure".
I am a Mom, myself. I love being with my kids, I really do.
However, shopping for school clothes, going to the post
office, the library, trudging about paying bills, and
stopping into the grocery store to pick up a loaf of bread
and baby wipes on our way home most certainly come nowhere
close to my idea of a "reckless adventure"! If anything,
these are run-of-the-mill basic American Mom daily
activities. No Mom would ever try to package these daily
grind errands as 'reckless adventures' and expect a kid to
buy it! But Sandusky, Ohio buys it?
Last spring I loaded all three of my kids and our family
dog up into our van and headed South from our home near
Washington, DC toward Alabama. We were going to see Daddy
in Fort Rucker, where he was stationed on temporary duty.
He had been gone for two months. We all missed him. He
missed all of us. The trip down took nearly three full days.
It was a heck of a long haul. It was worth it.
Plenty of people said that I was making a big mistake. They
thought that because two of my children (they were both 5
years old at the time) have Cerebral Palsy, and especially
because one of them uses a wheelchair, and because my 10
year old daughter has ADHD, I should never make that trip.
This past summer I took my kids to an amusement park. A big
amusement park. It was hot and humid that day. There were
scads of wild rides to ride, tons of sticky candy to eat,
and miles of snaking lines in which to wait our turn. At
each ride, we discovered that rules precluded my son from
enjoying the thrills and chills awaiting all of those kids
whose bodies did not happen to have Cerebral Palsy. At each
ride I questioned the operator why. At each ride I asked to
see a supervisor. At each ride I was told "It would not be
safe", or "We would be endangering 'kids like him'". At
each ride, others rode while my son and I watched.
At some point, while awaiting the arrival of yet another
park supervisor whose answer would inevitably be "no",
I decided. I decided we would wait no longer. I decided we
would not listen to "no". I decided we would not even ask.
I walked with my son to the front of the line where his
sisters were waiting to get aboard. I told his big sister
to get in, and placed him on her lap. I strapped them in.
They rode. He sat, smiling, laughing, imagining himself a
pilot, just like his Daddy, as he slowly traveled to
nowhere in a shiny green helicopter 4 feet above the ground.
Breathless, thrilled and eager for more (hey, amusement parks
do that to people!), we rushed to a roller coaster. This was
not a huge coaster. It was in the kid section of the park,
but it was no kiddie coaster, either. It was speedy. We got
in line. Our turn came up. We hopped into a car. People in
other cars stared. People in line scrunched their brows. Ride
attendants gawked. Somebody made a move for the supervisor's hut.
The kids and I avoided eye contact. We recognized that the
'predominant feeling' was not swinging in our favor. The coaster
lurched forward. One jerk. Two jerks. Three jerks. GONE!
Nothing mattered now because we… were… out of there! Up, down,
loop-dee-loop! The ride was over almost as quickly as it
started. We got off happy, caring only about our own predominant
feelings of joy.
The predominant feeling among the disability community most
certainly does not view Kelly Dillery as neglectful. With or
without curb cuts and sidewalks, Ms. Dillery is doing her job
every day. She is doing her best. So am I, and so are countless
ranks of Moms; Moms with and without disabilities. Sometimes,
we Moms have to dig deep and discover exactly what our best is
going to have to be. If this is the time in her life that Kelly
Dillery is forced to dig deep, I am confident that she will have
Moms galore in her corner.
As for my Spring travels with kids in tow and my 'reckless'
amusement park adventure. I guess I'm just a scofflaw.
So arrest me.
Jill Jacobs
<[log in to unmask]>
WAPD NOTE: Mrs Jacobs is a Member of the WAPD Board of
Directors. We are calling on all to lend strong support
to Ms. Dillery... E-mail the Sandusky Register Publisher,
Jim Hofmann: <[log in to unmask]> or Editorial
Director: Don Lee <[log in to unmask]>
Telephone: 419.625.5500
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KEEP ON KEEPING ON!
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[-RESOURCES-]
Disability Social History Project Web Site...
Check out the new "Archives" section on the
Disability Social History Project web site.
To get to the archives go to the main page
of the DSHP web site and scroll down to link
to the archives.
<http://www.disabilityhistory.org/dshp.html>
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ACHIEVING TOGETHER THAT WHICH WE COULD NEVER ACHIEVE ALONE!
That's what WAPD is all about.......
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SUCCESS IS A JOURNEY NOT A DESTINATION
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ABILITY MAGAZINE...
<http://www.abilitymagazine.com>
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NOT dis....BUT...ABILITY!
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Announcement .............
WORLDS LARGEST DEAF PARTY...
Held on June 3, 4, 5, 6, 1999 in HOPE, ARKANSAS!!
Rain or Shine, cool or hot!! Trophies, Door prizes,
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Bikini Contest, 50/50 Drawng, FREE MEALS!!
Free camping, Small R.V. welcome, Cold Shower,
Refreshments. DON'T MISS THIS PARTY!! Everybody welcome.
For more information or question? emai at:
<[log in to unmask]>
Or for a copy of flyer/form or question,
Please send S.A.S.E. to;
Stone Deaf
c/o B.Fleener
P.O Box 11231
Waco, TX 76716
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"PART-TIME WEALTH WEBMALL"
Let Kathy....from her wheelchair, show you a way to Independence!!
<http://www.sysop.com/dajack>
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IF IT'S GONNA BE..IT'S UP TO ME! or YOU!
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Be Proud Of Who You Are!
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Copyright© 1998 World Association of Persons with Disabilities
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George B. Kerford,Ph.D. Chairman/CEO Tel: 888.288.4909
World Association of Persons with disAbilities [ WAPD ]
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