An Interview with Ari Ne`eman, President of Autism Self Advocacy

MEDICAID
ADVOCATES
We Need You
Volume 7
Memoirs Look
at Disability
Experience
Independent Living Center, 15-17 Third Street, Troy, N.Y. 12180
Commentary
It’s Time to
Clean Up Our
Language
‘Jersey’ Sure
Has Come a
Long Way
In Recovery,
Nothing Left
to Chants
Asperger’s
a DisabilitY,
and a Gift
Ha Gets Last
Laugh on
‘Master Chef’
Issue 3
An Interview with Ari Ne’eman,
President of Autism Self Advocacy Network
Page 2
June 2013
INDEPENDENCE TODAY
Commentary
Medicaid Advocates: We Need You
By Janine Bertram Kemp
In Recovery, Nothing Left to Chants
It’s time to get involved.
Sometimes the help offered to us in life, well intended
though it may be, is not what we need or -- for that matter -- want. The following is a case in point.
At press time for this issue of Independence Today,
governors in all but 14 states have indicated support for
Medicaid expansion. A recent Rand Corp. study indicatMy disabilities date to Aug. 24th, 1984, when I was held
ed that states that refuse to expand Medicaid will lose
out on more than $8 billion and leave millions of citizens up and shot in the head, which caused brain injury (the
bullet remains lodged in my brain) and post-traumatic
in poverty.
stress disorder.
In some states, centers for independent living (CILs)
are part of broad-based coalitions, such as Texas’ My
Medicaid Matters, that are negotiating what long-term
services and supports (LTSS) will look like under their
state Medicaid plans.
Under Center for Medicare and Medicaid Services
(CMS) guidelines, LTSS includes both institutionalbased services and home- and community-based services (HCBS). The CMS guidelines encourage states
to include both HCBS and institutional programs in the
managed-care capitation rate (the fixed amount CMS
pays to a managed-care plan selected by an enrolled
Medicare beneficiary).
For advocates who want people out of institutions and
in the community, that means you must make sure that
both institutional programs and HCBS are the responsibility of the managed care organization (MCO) and that
the institutional programs are not “carved out.“
“Our assumption is, if a managed care agency is financially responsible for institutional-based services,
the MCO will figure out how to serve the person in the
community, where on average it’s less expensive,” says
Americans with Disabilities Act attorney Steve Gold. “If
the MCO is not responsible for institutional services, the
MCO will have a financial incentive to dump people with
disabilities -- especially with severe disabilities -- into
the institution.”
“Managed care seems to be an inevitability as the Congress debates entitlement ‘reform’ and states try to
make sense out of their growing Medicaid programs.
We can bitch and moan, or we can make managed
care work for us,” says Bob Kafka, National ADAPT
organizer. “It’s important that we are at the negotiating table so we can shape state policies and contracts
that will result in a system that has a functionally based
eligibility system, is person centered, and (is) consumer
directed with people with disabilities living in their own
Medicaid Advocates
Continued on page 4
At the time, I was a struggling writer (a fact that holds
true to this day for me and countless others who set time
aside daily to scribble words onto a page) and a New
York City cabbie.
A few weeks before I was shot, I picked up a four-person
fare, three women and a man. All were in their twenties.
They told me they were actors, and I told them I was a
writer. Telephone numbers were exchanged. One asked
me if I ever heard the chant “Nam-myoho-renge-kyo.”
“It is a wonderful chant,” they told me. “If you chant it,
you can get wealth, a beautiful woman, fame, anything
you want. The sky’s the limit.”
“I’ve heard of it,” I said, vaguely recalling some such
phrase. “But those aren’t exactly my kind of selling
points.”
“Can you say it? Just once? Can you say it?”
I repeated it, and my passengers exploded into loud paroxysms of applause and joyous squeals.
“Don’t you feel wonderful now?” one asked.
“Not any more so than before.”
One of the women, Susan, called me a day later. She
seemed like a nice person. We talked. She kept asking
me if I would be willing to come to one of their gatherings
to chant with them. I said I wasn’t interested in chanting but did like talking with her. Our conversation rolled
along for a while, and again she pushed the idea of my
coming to chant with them. I asked Susan if my joining
her group of chanters was a prerequisite to our being
friends. I pointed out that I had Catholic and Jewish and
Protestant and Muslim friends as well as atheist and
agnostic friends, and none made joining their respective
belief systems a prerequisite to our friendships. Susan
said I did not have to be a chanter for us to be friends,
Recovery
Continued on page 6
INDEPENDENCE TODAY
June 2013
Page 3
which he says “talk about us without us.”
Autism Group Founder: It’s Time
to Listen to What We Have to Say
By Mike Ervin
Ari Ne’eman is one of the wisest, most eloquent young
leaders in the disability rights movement. As president
of the Autism Self Advocacy Network (ASAN), he insists
that people with
autism speak
for themselves
and determine
their own service and advocacy priorities.
This has often
put him at
sharp odds with
more traditional
service providers and advocacy organizations such as
Autism Speaks,
INDEPENDENCE TODAY­­
June 2013
Volume 7 -Number 3
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© 2013 by ILCHV. No portion of Independence
Today may be reproduced without written permission
from ILCHV Inc.­­
___________________________
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For editorial matters, please call ­
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Ne’eman founded ASAN in 2006 when he was a
19-year-old freshman at the University of Maryland,
Baltimore County. In 2007, ASAN got its first big chance
to mobilize when the New York University Child Study
Center launched a so-called “public service campaign”
regarding childhood psychiatric conditions such as autism. The campaign consisted of several “ransom notes”
posters displayed in such places as New York City billboards and published in periodicals such as Newsweek.
The ads depicted autism as a vicious, sadistic kidnapper
holding helpless autistic children hostage. Like the Jerry
Lewis Muscular Dystrophy Association Telethon and
other paternalistic publicity campaigns that have stirred
the ire of disabled activists, ransom notes implied that
living with a disability is tragic and hopeless and the only
solution is a cure.
A relentless, two-year, Internet-generated charge led by
ASAN pressured the Child Study Center to grudgingly
shut down the campaign after a barrage of angry emails
and bad publicity. ASAN established itself as a significant new force in the disability rights movement
Ne’eman, who grew up in East Brunswick Township,
N.J., doesn’t discuss his childhood disability experience
in much detail. “My experience growing up was similar to
that of most autistic people,” he said. “We struggle socially. I had very strong interests in particular topics.”
He was diagnosed with Asperger syndrome at age 12
in 2000 and was shipped off to a segregated school.
“Instead of walking to my local high school, I took a
van about an hour and a half north,” he said. “After the
first few weeks I was there, I started wanting to get out.
One day I left in the middle of the school day, and I got
picked up and brought back pretty quick.”
Ne’eman self-advocated his way out of the school after two years, and he graduated from his neighborhood
school, East Brunswick High School. He went on to earn
a bachelor’s degree in political science.
Ne’eman is one of four full-time and two part-time employees of ASAN, which lists 15 U.S. chapters on its
website. Ne’eman was appointed by President Obama
to the National Council on Disability. Independence
Today spoke with him recently about his thoughts and
experiences.
Q: What was the atmosphere in the segregated school?
A: On the positive side, I started to connect with other
autistic people and get this feeling of culture and community, and on the negative side, I saw how people were
Ne’eman
Continued on page 8
Page 4
June 2013
Book review
Two Memoirs Give Honest Look
at Personal Disability Experience
By Deborah Kendrick
For years, my already
excessive reading life has
included scores of memoirs and autobiographies
written by individuals with
various disabilities.
Like any genre, the outcome of such efforts is
mixed. Some present a
set of life’s experiences
with an “aw, shucks;
it was nothing” kind of
dance I find cloying at
best. Others inflate mediocre accomplishments
as inspirational simply
because a disability was
part of the experience.
Every once in a while, this
quest unearths a book
that is compelling, candid
and yes, inspirational,
while managing to provide
a genuine picture of disability as it is blended into
the fabric of life.
Two such treasures are
those written by actor
Michael J. Fox and law
professor Elyn R. Saks.
Each takes us on an upclose and personal tour of
a gripping disability experience, and each does
so with brilliance, humor
and a clear admission of
struggle with an equally
clear absence of self-pity.
Whether you first knew
him as Alex P. Keaton
in the 1980s TV series
“Family Ties” or as Marty
McFly in the movie trilogy
“Back to the Future,” you
knew Michael J. Fox as a
hilarious, always youthful,
charismatic actor. In this
first of three memoirs, Fox
maintains that light-heart-
ed, ironic appreciation of
the absurd with an honest
willingness to laugh at everything, including himself.
In “Lucky Man: A Memoir” (Hyperion, 2002),
Fox vividly recaptures the
morning in 1990 when he
woke up in a Florida hotel, hung over from alcohol and mystified by the
“message” in his left hand.
The “message” was the
first uncontrollable twitching that was eventually
diagnosed as early onset
Parkinson’s, a condition
he would keep secret for
nearly a decade.
Fox was born in 1961 to
a Canadian military family. He reminisces about
his childhood with warmth
and laughter, replete with
anecdotes clearly indicating his future in entertainment. At 18, he headed off
to Hollywood, the proverbial quest to find stardom,
which in his case he did
in a fairly short period of
time.
With refreshing, albeit
sometimes painful, candor, he describes how
quickly he became a
spoiled, self-absorbed
and alcoholic celebrity.
We see the complexity of
the young Fox, someone
who adored his grandmother and other family
members, was astonished
by his own success, and
readily admits that he was
not prepared to handle it.
Book Review
Continued on page 9
INDEPENDENCE TODAY
Medicaid Advocates
Continued from page 2
affordable, accessible, integrated homes or
apartments with needed
supports and services.”
Kafka says that many
states have a variety of
Medicaid state plan and
HCBS waiver programs
that are administratively
expensive and are based
on specific disability labels or age. It would be
more effective, he says,
to have a system with a
unified budget, a single
point of entry and functional assessments of
each individual so people
get a menu of services
based on what they need
rather than on what they
are labeled.
He adds that this system
must have attendants that
are paid a livable wage
with benefits. Frequently,
the people who do attendant work, whether in
a consumer-directed or
agency delivery system,
are forgotten.
“We used to chant, ‘Label
jars, not people!’ Now we
have an opportunity to
implement that slogan,”
Kafka says. “Each person can be assessed and
receive supports for what
he or she needs to live in
their own home and community. There would be
considerable savings in
not paying for the administration of myriad waiver
programs.
“The road to this type of
system has many political
land mines,” Kafka continues. “Many of them
are in our own advocacy
communities. The ADA
speaks to the civil rights
of people with disabilities.
Our services and supports
should be developed and
delivered with this philosophical foundation. Let’s
not be like Pogo, the old
comic strip character, who
said, ‘We have met the enemy and he is us.’”
Gail Hafner, a senior attorney at the Maryland Disability Law Center who serves
on the Maryland Statewide
Independent Living Council, notes that CILs in that
state were never providers
of personal care assistant
(PCA) services.
“We saw centers in other
states making tons of money as PAS providers but
never went down that road,”
she says. “Now that states
are all going to managed
care organization models,
those CILs have lost their
contracts and have had to
downsize dramatically.”
Hafner says that CILs still
can provide key services as
subcontractors under the
MCO model.
“In Maryland, CILs are talking amongst themselves
about what role they want
to play in Community First
Choice,” she says. “Do
they want to be the supports and planning broker,
or is that a medical model
style that advocates won’t
touch? Can peer services
be built in to the broker job
description? Can CILs provide training in managing
personal assistants? The
smarter CILs are lining up
to be part of the health care
exchange network. They
will be the navigators, fundMedicaid Advocates
Continued on page 6
INDEPENDENCE TODAY
June 2013
Page 5
Commentary
Ha Gets Last Laugh on ‘Master Chef’
By Deborah Kendrick
By Kathi Wolfe
It’s Time to Clean Up Our Language
Back in the mid-1980s,
when my freelance career
had begun but publications were not available
to me as they are today
through the miracles of
technology, I would sometimes spend afternoons
with one particular friend,
attacking a pile of magazines like beans to be
snapped.
Emily was a wonderful
blend of surrogate mom,
friend, administrative assistant and translator. We
would read the table of
contents of a magazine,
zip through certain articles – I would direct and
she would read -- getting snippets of content
and style to get a feel for
whether the magazine
was a potential candidate for my work. And, of
course, she would describe photos to me.
In one of those heartwrenching moments
frozen in memory, I recall her picking up one
magazine of particular
interest to me one day
and commenting, “On the
cover, there’s a picture of
a Mongoloid child…”
I shuddered. The word
was like an electric shock
to my head and my heart,
and I could barely speak.
“We don’t use that word
anymore,” I remember
sort of mumbling, feeling
awash with shame that
this person so dear to me
had uttered such ugliness. “I think you mean
a child with Down syndrome.”
“Mongoloid” was, of
course, the accepted language of her generation.
She was not a bigot. She
had worked for social justice in a variety of ways
and counted among her
friends people across an
array of socioeconomic
groups. But no one yet had
told her that it was unkind
or disrespectful to refer to
a child who happened to
have a certain genetic difference as a Mongoloid.
Even before there was
such a widespread move
to clean up our language
with regard to disability, I
had on many occasions
experienced that familiar shudder, that visceral
recoil when I heard certain words and phrases
-- “crippled,” “spastic,”
“retard,” “deaf and dumb,”
“imbecile” -- that managed
to dehumanize people with
disabilities. We all know
the degrading lexicon that
has been used to label us
over the centuries.
The word “blind” could fill
an entire essay in its own
right. Our casual references to “blind faith,” “blind
love,” “turning a blind eye”
and so on all employ the
adjective to connote ignorance and cluelessness.
But let’s talk about the
words that we have actually managed to expunge,
or nearly so, from our common vocabulary.
Although we still have
“handicapped parking”
Language
Continued on page 7
Eating -- whether
finding comfort
from mac and
cheese or savoring seared scallops -- is one of
life’s greatest
pleasures. Few
things are more
captivating than
watching a fabulous chef in action.
Yet, though many
who are blind have
learned to cook
as well as their
sighted peers, it’s Christina Ha/Triple 7 Public Relations
often believed that
band and I like to spend our
people with low
leisure time with friends,
vision can’t engage in the
culinary arts. Christine Ha, being surrounded by good
the first blind contestant on food and drinks. It would
feature a menu I create.”
the Fox TV show “Master
Chef,” blew this misperIn the foreword to Ha’s
ception to bits.
book, Gordon Ramsay,
a “Master Chef” judge,
Ha, who is legally blind,
wrote that when he first
was the winner of “Master
saw her white cane, “All
Chef” Season 3. She won
sorts of questions were
$250,000 and a cookbook
running through my head.
deal by defeating more
How would she handle hot
than 30,000 home cooks
stoves? What about sharp
across America for the
knives? Would she chop off
“master chef” title. Her
her fingers? ... (but) it was
cookbook, “Recipes From
My Own Kitchen” from Ro- clear that this was a woman
who was using each of her
dale Books, is now availother senses ... to elevate
able in print and e-books,
her cooking to an extraordinary level.”
Ha, 34, earned an M.F.A.
(Master of Fine Arts) degree from the University of Ramsey wrote that Ha “has
an extraordinary palate.
Houston’s creative writing
She picks up hot ingrediprogram. With her husents, touches them, and
band, Ha hopes to open
she thinks about this ima gastropub in Houston,
age on the plate ... I know
where they both live.
chefs with Michelin stars
that don’t have palates like
“It has been a dream of
mine,” Ha wrote by email,
“because that’s exactly
Master Chef
Continued on page 7
the kind of spot my hus-
Page 6
Recovery
June 2013
Continued from page 2
and then, in short order, returned to urging me to come
to a gathering to chant.
Flash forward to a day or two after the shooting. I am in
a two-person hospital room in Brooklyn’s Long Island
College Hospital hooked up to several tubes and I am,
not surprisingly, in rather poor shape. But my roommate
is in worse shape than I am. He is an older man named
John. He is in a coma and is being fed through a nasogastric tube.
I get a phone call from Susan. She’d gotten the number
to my hospital room and a run-down of my situation from
David, my apartment mate. She says she is in a subway
station with two of her fellow chanters, and they are coming to the hospital to chant over me! On her end of the
phone, I hear a train approaching in the background. To
my dismay, the train drowns out my pleas (heartfelt, I assure you) that maybe, just maybe, they could come chant
over me some other time. No such luck. She is off the
phone.
The chanters are coming.
Now, I do not know all the specifics of what nurses are
required to study in nursing school, but I think it is safe to
say that helping a patient manage an impending invasion
of chanters is not in any of the lesson plans. Luckily for
me, the nurses taking care of me were, as I was about to
find out, capable of managing anything.
I ring the call bell. I tell them of my problem: the impending invasion of chanters. In short order we (actually, they)
devise a chanter’s management plan based on two concrete realities. First, we know John is in a coma. Second,
the chanters don’t know John is in a coma.
When Susan, accompanied by her two fellow chanters,
comes into the room that afternoon, the TV and lights are
off, and I am lying in bed looking up at the ceiling.
Susan says: “Hi, Peter. How are you? We thought we – “
I raise my hand, gently cutting her off, and whisper:
“Look, I would love it if you could chant over me. But you
see him?” I nod in the direction of John. The chanters
nod that they see him. “Well, they just got him to sleep.
Hasn’t slept in days ‘cause of pain. The poor guy’s been
in pain for a long time. If we chant, we might wake him.”
The plan works. They leave. I thank John. A couple of
nurses come in smiling. We have pulled it off. The next
day I learned that the chanters had gone to the nursing
station to double check that chanting would have been
a bad idea at the time of their arrival because of Peter’s
roommate. Oh yes, these wonderful nurses assured
INDEPENDENCE TODAY
them, it would be a very bad idea.
*****************************************************************
Peter S. Kahrmann writes a blog on disability issues. He resides in
Massachusetts.
Medicaid Advocates
Continued from page 4
ed to help individuals in Medicaid make choices about
what HMO or what exchange to use.”
Hefner, who is involved with Medicaid negotiations in
Maryland, knows of what she speaks.
“Maryland has been resisting covering communication
as an activity of daily living,” she says. “They agree
that bathing and eating can be covered but not aides to
communication. What could be more central to control
over one’s own life than communication? If you cannot communicate, how can you say what you want for
breakfast or that you need to get downtown for a meeting or you want out of that nursing home? The provider
types in our state cannot seem to grasp that.”
Henry Claypool, senior vice president at the American
Association of Persons with Disabilities, began his
career at the Center for People with Disabilities in Boulder, Colo. He first learned how to schedule personal
care assistants, then managed a home health agency,
and later directed the center. He has held positions at
CMS and most recently as principal deputy administrator at the Administration on Community Living. Claypool, who lives with a spinal cord injury, is an expert in
Medicaid and HCBS. When discussing advances made
in Medicaid HCBS and LTSS under the Obama administration, many leading advocates credit Claypool.
“Advocates in the states should be advocating for expanding HCBS and state rebalancing programs,” Claypool says. “They should urge states to take up available
incentives like Money Follows the Person, although 45
states now have MFP. States should apply for BIP, the
Balancing Incentives Program. Advocates should also
push states to apply for the Community First Choice option and HCBS state plan option 1915(I).”
ADA attorney Gold’s most recent information update
on Medicaid noted five key points on the CMS-issued
publication “Guidance to States using 1115 Demonstrations or 1915(b) Waivers for Managed Long Term Services and Supports Programs.” If your state is applying
for a 1115 demonstration or 1915(b) waiver, you should
review and follow Gold’s guidance. (Most states are
applying because it means additional federal funds for
state Medicaid programs).
Medicaid Advocates
Continued on page 10
INDEPENDENCE TODAY
Language
June 2013
Continued from page 5
placards, the passage of the 1990 Americans with Disabilities Act has gone a long way toward replacing that
ickier word with the more respectable, less diminishing
identifier “disability.”
People First language is more or less adopted in journalism now, so “that guy who uses a wheelchair” or “that
girl with cerebral palsy” is becoming happily habitual. It
is with deepest gratitude that I recognize it has been a
long time since I’ve seen or heard “cripple” or “spastic” in
any context.
We still, however, have miles to go. Even some of the
new replacements are offensive to some of us. “Special needs,” for instance, has the proverbial nails-onchalkboard effect on me. On one hand, it clearly denotes
shame. Instead of calling a difference what it is, such
as “my son has autism,” we say, “my son has special
needs.” Translation: I am too embarrassed to name the
set of traits that marks my child as “different,” so I’ll just
pigeonhole him as “special needs.” On the other hand,
it’s just plain dumb. Everyone has special needs! Isn’t
my preference for dark chocolate over light special? Isn’t
your love of folk music over jazz special? As a lover of
clarity, I find “special needs” silly and vague.
Still, some words are so blatantly hurtful that legislators
have weighed in. In 2010, an act of Congress mandated
a change from “mental retardation” to “intellectual disability” in all references in federal laws and programs. In
response to the ongoing campaign to eliminate the Rword, many states have now passed similar laws. Organizations and agencies across the country are changing
their names.
Clearly, recognition is spreading that the word “retarded”
is fraught with the connotation of incapacity or stupidity.
And yet, we all hear in casual conversations a reference
to someone who has done something foolish as being a
“retard.” Legislation is helping, but it can only go so far.
Last year, two senators, Kent Conrad, D-N.D., and Mike
Crapo, R-Ind., introduced a bill designed to put an end
to yet another dehumanizing identifier. The legislation is
dubbed the 21st Century Language Act of 2012, and its
aim is to remove the word lunatic from the first section of
U.S. code, a section of basic definitions.
Page 7
Master Chef
Continued on page
hers.”
In a telephone interview with Independence Today, Ha
discussed a wide range of topics from why she learned
to cook to how food connects all of us across cultures
to how she coped with vision loss.
Q: What made you learn to cook?
A: Cooking has always been something I really love! I
started cooking out of necessity. I was in college and
lived off-campus. I couldn’t afford to keep eating out all
the time. The process of turning raw ingredients into
a mix of flavors and textures was kind of cool! I was
re-creating what I’d eaten and others had cooked. I
thought, I can do this!
Q: Why do you love food and the culinary arts? Your
mom died when you were 13. How does that influence
your work as a chef?
A: My mom was a great cook, but her recipes – for
noodle soups, braised meats, etc. are lost. [Ha’s parents came to the United States from Vietnam in 1975.]
I have nostalgia for when she was alive. It makes me
want to pull together recipes. I cook to honor her.
I enjoy it when I feed other people and see them enjoying my food. It’s the nurturing side of me. It’s an affinity
(for) being able to make people happy with what I’ve
created. Food is universal. Everyone has to eat to sustain themselves. It’s an easy way to connect people
who don’t have many things (or anything) in common. It
unites people to share a meal.
Q: You began losing vision from neuromyelitis optica
(NMO) when you were in college. In your cookbook you
write, “I recall being home alone one afternoon in 2007,
shortly after my vision had worsened to the level it is
today. I was hungry and so made my way to my kitchen
... I retrieved peanut butter and jelly but had trouble
spreading them onto the bread ... I thought I might have
to give up cooking forever ...” How did you move on
from this despair? How did you learn to adapt to your
vision loss?
A: In 2004, my vision decreased to where I could no
longer drive. Since 2007, I use a (white) cane or a cane
The term “lunatic” has been around for centuries, origiwith a sighted guide. I see shadows and shapes and
nally connected to the notion that certain kinds of “madcolor contrasts. When you’re losing your vision, it’s
ness” were induced by particular phases of the moon.
about survival and acceptance. I was (wondering), How
The senators say that because even the psychiatric
am I going to survive? I’d been independent -- I’d lost
profession abandoned the term long ago, it just plain has my mom at a young age. An only child, I just wanted to
no business appearing in U.S. code and should be rekeep being independent. I was really bored at home –
Language
Continued on page 12
Master Chef
Continued on page 9
Page 8
Ne’eman
June 2013
INDEPENDENCE TODAY
Continued from page 3
talking about autism and autistic people.
The first thing I noticed there was that when I was in public school, the emphasis was on teaching us academic
topics. In the segregated school, the emphasis was on
teaching us how they thought we should behave. There
was this idea that by removing us from our local communities and schools and sitting us down and telling us how
we were supposed to behave, we would be better off
interacting with people and (would) succeed in life. We
were no longer given the opportunity to get an academic
education or to define our own goals.
I responded rather poorly to the often rigid expectations
of the school environment. There was always this emphasis after I left the special ed school on trying to present me and the others who left as the “good” disabled
kids: “You have potential. You have a future. You can be
included. And the people who are still there -- they don’t
fall into that category.” I still don’t buy into that message.
I fundamentally don’t believe there is that much difference between me and my classmates that meant that I
was deserving to do the things I wanted to with my life
and they weren’t. That experience taught me how arbitrary the things that lead to a person with a disability
being able to succeed or fail in life can often be.
There’s always this implicit bargain that you see in those
educational environments where they say, “We’ll recognize your worth if you put yourself above the other disabled students.”
Q: Why do you think that bargain exists?
A: It’s about power. We’re in a period of tremendous
change. If you go back 10 years in the autism world,
the voices of self-advocates were nonexistent. Thanks
in part to the work we’ve been doing, it is now an embarrassing thing to be excluding autistic people from
Ari Ne’eman/Google Images
conversations about autism. That doesn’t mean that the
people who were in the business of excluding us are willing to give up the power they once had. They’re looking
for people who are going to tell their stories but not put
any meaningful demands on them. So it’s our responsibility as folks who are active in the disability rights movement and have some prominence to not be the easy
self-advocates, to not just speak on our own behalf, but
to link our experience to the larger experience of disabled people.
You see that come up in the political context disabled
adults work in. Particularly in the developmental disability and psychiatric community, there is tremendous
pressure coming from service providers, professionals
and parents’ groups to let yourself be separated into that
subset of disabled people that get deemed as capable.
If you’re not willing to do that, you pretty much have no
choice but to join the real disability rights movement.
The biggest thing I took out of my experience in a special education environment is understanding how fundamentally arbitrary and also how ridiculous and unjust
those distinctions can be. This was a useful framework
for me to have for the beginning of my advocacy.
Q: How did you discover the larger disability rights
movement?
A: The Internet has been incredibly important for me.
The first autistic people I connected with who had the
same views and frustrations with the status quo were
online. I learned about the existence of a larger disability
rights movement online. That was very powerful.
Q: When you founded ASAN, what did you envision?
Ari Ne’eman speaks at 2011 “My Medicaid Matters” Rally in
Washington DC/Google Images
Ne’eman
Continued on page 10
INDEPENDENCE TODAY
Book Review
June 2013
Continued from page 4
He pokes fun at the dissimilarities between himself and
typical Hollywood celebrities – his youthful appearance,
his short stature – and the same endearing qualities that
drew so many of us to his earliest award-winning roles
ring true on every page.
We learn about his battles with Parkinson’s: the details
of agonizing physical changes, the almost Herculean
(and sometimes comical) wrestling matches he has with
his own limbs to keep them under control lest he give
his condition away, and the quest for medical knowledge
many readers with disabilities will find familiar.
He doesn’t ignore the stories that reveal his earlier self
as an occasional jerk or the recognition of his problem
with alcohol. But neither does he fail to express the love
and gratitude he feels for his wife, his children, his family
and his fans.
Another notable incident that undoubtedly will resonate
with many readers is Fox’s decision to tell the world
about his condition. After a decade of shame and the
sometimes bizarre machinations he used to hide his disability, he ultimately shared his secret and then became
Master Chef
Continued from page 7
not working.
Book Cover/Triple 7 Public Relations
Before my vision
loss, I worked with
software – doing
accounting and consulting for oil and
gas firms. It wasn’t
satisfying. I felt like
I wasn’t fulfilling
my purpose on this
earth. Losing vision
was in a way a blessing in disguise. Life
is too short not to
do what you want –
what you love.
I did some research and learned about rehab (vocational rehabilitation). I learned about adaptive tools to use
in the kitchen. I adjusted slowly and began to live more
independently. I went back to school to get my master’s
in creative writing.
Q: How did the other contestants and the public react
to your vision impairment when you were on “Master
Chef?” Did they wonder how someone who’s blind
could enter the fray?
Page 9
a leading activist in raising
awareness of and seeking a cure for Parkinson’s
disease.
If you weren’t already a
fan of this actor, author,
producer, and activist from
his many award-winning
artistic endeavors, you will
be after reading this book.
It is written with warmth,
irony and acceptance and
the clear message that
any disability can still take
a back seat to a full and
rewarding life.
Book Cover/Google Images
Saks’ memoir, “The Center Cannot Hold: My Journey
Through Madness” (Hyperion, 2008), reads like a fascinating novel, but it is so much more. With vivid detail and
excruciating honesty, Saks brings the reader on a terrifying roller coaster ride of her own episodes with psychosis.
Book Review
Continued on page 12
A: I think everyone had that question. Because I was in
the top 100 (contestants), some people thought having
me on the show was a stunt –that I was on as a gimmick
to increase ratings. They’d ask me, “Who’s going to use
the knife for you?” I was like, “Me.” They didn’t take me
seriously. I wasn’t hurt by that. I knew that if they didn’t
think I was fierce competition, they would worry about me
once they saw that I could cook.
It’s natural. People are curious about how I do things.
Even my friends find it interesting to see how I achieve
things in the kitchen. Fans want to know how I put on my
makeup. I’ve thought of putting on makeup or cooking on
YouTube – so people can see how I do things (as someone who’s legally blind).
Q: What are some of the accommodations that people
who are blind use when they cook? What are some of
the limitations that folks who have low vision encounter
when they engage in the culinary arts?
A: There are things like talking thermometers. In my
home kitchen, I cook by myself and with my husband.
Knowing where things are is important. I ask him not to
move or remove things from where I’ve placed them.
Cooking in a commercial kitchen isn’t impossible for a
blind person, but it’s difficult – it has challenges. Food
has to be prepared in a short amount of time. A visually
Master Chef
Continued on page 13
Page 10
Ne’eman
June 2013
Continued from page 8
A: I envisioned it being a collective voice. When policymakers were making decisions, they were hearing
from parents. They were hearing from professionals.
They should hear from us. ASAN was designed to be
a source of political power and to have a sophisticated
understanding of public policy as well as research and
service provision that could put us on par with comparable advocacy efforts within the parent and professional communities.
Q: Why was ASAN successful in shutting down the
ransom notes campaign?
A: We were clear that this was not going to work if we
were only blogging about this and speaking to ourselves. We sent out action alerts where we provided
not just the email and phone number for the NYU Child
Studies Center. We also managed through various intelligence efforts to get the email addresses of several
of their large donors. So we hit them where it hurts.
We managed to get media coverage in The New York
Times, The Wall Street Journal, The Washington Post.
The most important thing we were able to do was tap
into the broader cross-disability community. The first
group we got on our sign-on letter was ADAPT. After
that, getting groups like NCIL, AAPD and TASH (an
international advocacy association of people with disabilities and advocates) on board was pretty simple.
Q: What are ASAN’s main priorities?
A: We’re very interested in pushing the boundaries of
the Olmstead decision. Very often, states just rebrand
institutions as community-based settings. Two years
ago, Missouri decided to take the residents of an institution and put them in several large group homes on
the same grounds of the institution. They were going
to call it a gated community. We were fortunate that we
and other organizations were able to convince CMS
(the Centers for Medicare & Medicaid Services) to refuse permission. So some of our advocacy is centered
on urging CMS and state governments to come up with
meaningful definitions of home- and community-based
services that talk about the rights people have. Are
people free to invite visitors? Do people have the freedom to go to bed when they want? If you’re 45 years
old and you have a bedtime, you’re living in an institutional environment, even if there are only two or three
roommates there.
Right now, most autism research funding goes toward causation and cure. We don’t believe in the
idea of cure. There’s not going to be a magic pill that
Ne’eman
Continued on page 16
INDEPENDENCE TODAY
Medicaid Advocates
Continued from page 6
Claypool says some CILs have lost significant funding
by losing the HCBS service provision.
“CILs will have to rejigger their business models if they
want to provide PCA services. The CILs were robust
but (were) based on a business model of the state paying for agency services. They were funded like nursing
homes. Consumer direction doesn’t need that much
staff attention. It needs a fiscal intermediary and modest support on how to arrange PCAs. Really, you are
just a fiscal intermediary providing case management.”
The Disability Rights Education and Defense Fund and
the National Senior Citizens Law Center recently issued a guide that should prove valuable for state-based
My Medicaid Matters coalitions and other disability
rights advocates. The guide, “Identifying and Selecting Long-Term Services and Supports Outcome Measures,” focuses on outcome measures based on individual experience, because a beneficiary’s experiences
are the best starting point for judging whether systems
are performing well. The guide discusses existing and
in-development quality measures, presents criteria for
selecting LTSS outcome measures, suggests methods
for building LTSS knowledge and infrastructure, and
promotes steps advocates can take.
Navigating Medicaid LTSS and HCBS and advocating for consumer direction in state Medicaid plans is
a challenge, yet helping people with disabilities live in
their own homes and communities rather than nursing
homes is a priority in the disability rights movement.
The best way to ensure sufficient home- and community-based services (HCBS) in your state is to be at the
negotiating table to help shape the Medicaid plan. For
those stakeholders not invited to the planning table,
make sure your state is including funding for HCBS/
LTSS in its Medicaid plan and delivery system.
And if your state is not following the ADA and Olmstead
guidelines, I urge you to file complaints with CMS. If
you still don’t get results, go ahead and sue your state
– you can do so under ADA and Olmstead law.
***************************************************************
Janine Bertram Kemp is a writer, advocate and president of the
Disability Rights Center. She also is a member of ADAPT.
WRITERS WANTED
SEND INFORMATION TO :
independencetoday2@gmail.com
INDEPENDENCE TODAY
June 2013
‘Jersey’ Sure Has Come a Long Way
By John M Williams
To Father and Son, Asperger’s
a Disability -- and a Gift as Well
By Kathi Wolfe
To quote 27-year old Matthew “Jersey” Thomas: “I am
the luckiest man in the world.”
When asked why he thinks that, he replied: “I have a
job. I am engaged. I won thousands of dollars (on a
horse race), and I was recently promoted.”
A native of New Jersey, Thomas recently received his
doctorate in economics from Penn State University.
Earning a Ph. D. had been his goal for 10 years since
starting college in 2003. Along the way, he graduated in
2007 magna cum laude from Michigan State University
with a Bachelor of Arts in economics. Two years later,
he received his master’s degree in economics from
MSU.
“‘Jersey’ is a braggart about his accomplishments, but
they are real,” said Terrence O’Rourke, who roomed
with Thomas for five years. He came up with the name
“Jersey” because every one of Thomas’ sweaters and
sweatshirts had that name on it. Thomas was born in
Jersey City in 1986.
Thomas likes being called “Jersey”; he wears the nickname proudly. Most of his classmates and his friends
and family call him that. He and his family spend two
weeks on the Jersey Shore every July. They have been
going there since Jersey was 1 year old.
“‘Jersey’ has a right to brag,” said Thomas’ fiancée,
Maureen McCormick. “For someone with multiple disabilities, he has achieved much.”
McCormick met Thomas three years ago when her
brother Larry brought him home for Thanksgiving weekend. She was impressed by his willingness to play
touch football even though he has been blind in his left
eye since birth. They are getting married on June 8th,
2014.
Thomas does not like to talk about his blindness, his
40% hearing loss or his articulatory problem. “I am
measured by my ability and not my disabilities,” he said.
Nor does he like to dwell on the past challenges his
disabilities posed. His enthusiasm disappears when he
remembers his early school years.
“The public and private schools in Jersey City were not
intellectually equipped to educate a student with multiple disabilities,” said his father, Randolph Thomas.
‘Jersey’
Page 11
Continued on page 13
Forget about – bonetingling detective mysteries or irreverent comedies. Nothing’s more,
by turns, dramatic or
humorous than parenting -- especially when
the parent is John Elder
Robison.
Robison, a writer and
machine aficionado,
wrote the 2007 bestselling memoir “Look
Me in the Eye” about
learning that he had
Asperger’s syndrome
Book Cover/Google Images
after spending more than 40
years feeling he was different but not knowing why. Decades later, Robison discovered that his adolescent son
Jack (aka Cubby), who had seemed odd to his peers
and a stubborn misfit to his teachers in school, also had
Asperger’s. Robison’s new book “Raising Cubby: A Father and Son’s Adventures with Asperger’s, Trains, Tractors, and High Explosives” is the moving, riveting, slyly
funny story of their loving, offbeat relationship.
Robison’s parenting story involves tall tales, fast cars
and explosives. When Cubby asked where he came
from, Robison told him that he’d bought him from the
“Kid Store.” The salesman, he added, had cheated
him by saying that Cubby would do “all the chores.” At
bedtime, he told Cubby stories about nuclear-powered
horses. Santa, Robison told his young son, was a whaling captain. He shared his enthusiasm for navigating
machines with Cubby. By age 10, Cubby had steered
a Coast Guard cutter, driven a freight train and run an
antique Rolls Royce into a fence.
Cubby grew into a budding, brilliant young chemist. By
age 17, he was making military-grade explosives in a
field and writing about it online. Cubby was (and is) no
terrorist. He had no wish to harm anyone. As a scientist,
Cubby only wanted to see how the chemicals worked.
Unfortunately, his activities came to the attention of a local prosecutor in the western Massachusetts town where
he lived. Though he was charged with felonies that car-
Father, Son
Continued on page 15
Page 12
Book Review
During her roles as
an Oxford scholar,
a Yale law student
and the daughter of
a Florida family of
means, Saks experienced repeated,
sometimes horrific,
hospitalizations In
England and America.
June 2013
Continued from page 8
Elyn Saks/Google Images
In one milestone episode, we see her as an intense
law student, spiraling into one of her episodes while in
her professor’s office. She climbs out onto the roof and
fashions herself a belt from the telephone wire she finds
there. The compassionate professor invites her home
to have dinner with his family, but inevitably, they wind
up at the emergency room. We feel both the anguish of
her life spinning out of control along with the concern of
those around her.
When we read of her
as a determined psychotic in the emergency room who is
restrained with leather straps on all four
limbs and has medication forced down
her throat, her terror
is ours. This is only
one of countless episodes of her spiraling
into and out of her
psychotic episodes,
and again and again,
we see her resilience
as she resumes her
Book Cover/Google Images
therapy sessions and
takes the medication essential to maintaining her mental health.
When her psychotic episodes are triggered, she babbles incoherently with engaging word play, twirling while
singing nonsense ditties, or muttering that she fears
she must be dangerous, identifying herself with various
murderous criminals who have been in the news.
And yet, again and again, she is a survivor. She is brilliant; she won a MacArthur Fellowship, also known as
the “genius grant,” and currently is a law professor in
southern California.
She writes poignantly of the stigma surrounding mental illness and her empathy with patients who still are
sometimes mistreated. She has firsthand knowledge of
INDEPENDENCE TODAY
the humiliation and degradation that some patients still
suffer. Despite being labeled as essentially incapable of
making any contribution to society, she has proved that,
with proper treatment, a person with schizophrenia can
have a brilliant career, friendships, love -- a life.
Saks writes with passion and stunning clarity. What
makes this book well worth reading, however, is her
honesty. She exposes herself entirely,– including her
delusions and insecurities – and does so with the clearly
fervent hope that her candor will help others better understand and more appropriately treat others with mental illness.
***************************************************************
Deborah Kendrick is a newspaper columnist, editor and poet. She
Language
Continued from page 7
moved.
While I applaud this particular endeavor to wipe out a
pejorative term from U.S. code, much more is required
of all of us to change the way we speak and write about
people with disabilities than a handful of well-intentioned
laws.
When I hear the word “retarded” used in casual conversation (usually as a slur to connote incompetency
directed toward someone who doesn’t have an identifiable disability), it is a reflexive reaction for me to insert a
comment such as, “We don’t use that word like that anymore.” Sometimes, this elicits a mumbled apology; just
as often, it gets an eye roll.
Does it really matter, this business of words? It matters
every bit as much as having an equal shot at a job for
which we are qualified or an accessible approach to the
playground.
Our words reflect our attitudes, and if we really believe
that all humans have equal rights and value and responsibilities, then it is vital that we reflect that conviction in
our written and spoken words.
And I’m not saying that it’s easy.
Have I ever used the word “lunatic” to connote out-ofcontrol or irrational behavior? Sure I have. But my earnest aim is to stop it.
Our language is constantly evolving. We have countless
words today that our grandparents never used, and many
that we use today will be amusing or absurd in the minds
of generations to come. There are plenty of words available to us, though, and we can at the very least make the
small mental adjustment to choose the most respectful
ones when referring to one another.
****************************************************************
Deborah Kendrick can be reached at Kendrick.deborah@gmail.
com.
INDEPENDENCE TODAY
‘Jersey’
Continued from page 11
Thomas said school bored him because his teachers
treated him as though he was not even there most of
the time. As a result, he was a C-minus student and
was not motivated to study. When his family moved to
Lansing, Mich., in 1999,Thomas met “a most remarkable teacher.” That teacher was Sarah Campbell.
“I had read Thomas’ school transcripts before I met
him,” Campbell said. “I had a totally different picture of
him when I met him.” She said Thomas impressed her
when she asked him what his goals were.
“I want to attend college and earn a degree in economics and earn $100,000 a year when I reach 30,” he
said.
“I was floored,” Campbell said. Instead of spending
30 minutes with Thomas, she spent 90 minutes. She
learned that the schools in New Jersey had not given
Thomas the technology, the counseling and other services to which he was entitled.
Campbell believed that given the proper tools and guidance, Thomas could be successful. She worked with
the school, Thomas, his parents, a speech therapist
and an audiologist on his individualized education program (IEP) diploma. She encouraged Thomas to get
involved in the math club and chess club. The athletics
coach convinced Thomas to become involved in softball as a third base coach.
The school printed materials in 16-point type, so
he could read them. He recorded his classes using
a handheld tape recorder. His teachers wore a microphone, and Thomas wore a headset. He went to
speech therapy twice weekly and became interested
in acting. In his junior and senior years, he had small
parts in the school’s plays. Academically, by the end of
his freshman year he was 15th out of a class of 191.
When he graduated from high school, he was ranked
fifth out of a class of 248.
When Thomas graduated in 2007, he was offered jobs
with Arthur Andersen and Co., General Electric, Apple,
Ernst & Young, and a dozen smaller companies. He
picked Goodrich. After 18 months, he left to attend Penn
State University. The company promised to hire him back
when he earned his doctorate. While at Penn State, he
worked for Goodrich part time.
“In my time with Goodrich, I never heard a discouraging
word about my disabilities,” Thomas said. He believes
he was judged on his ability. “I would not work for a business that would discriminate against people with disabilities.”
Thomas has had numerous job offers but has not decided which one he will accept. He wants to be challenged
personally, mathematically and economically. He wants
to see more people with disabilities with a college education hired in responsible and prestigious positions.
Thomas rejects the notion that he is a role model for
people with disabilities. He does not consider himself to
be disabled. He believes he is physically limited in certain areas but that those limitations do not make him a
disabled person.
“I am what I am,” he said.
As a rabid horse race follower and a cautious gambler,
he also won thousands on the Preakness Stakes this
year.
“I will never be as lucky as I was picking It’s My Lucky
Day to come in second,” Thomas said. The horse, a
longshot, did exactly that.
Thomas’ heroine is Helen Keller. He believes that as a
deafblind woman, she did more to educate the world
about the abilities of people with disabilities than any person with a disability who ever lived.
****************************************************************
John M. Williams can be reached at jwilliams@atechnews.com.
Master Chef
Continued from page
In the fall of 2003, he attended MSU on an academic
scholarship. He graduated in 2007.
impaired person would have to understand -- be really
familiar -- with how his or her station is set up.
“College was my salvation,” Thomas said. “I had all the
assistive technology and student services for disabled
students I needed.”
Q: What type of writing are you doing now?
He made friends with blind students, deaf and hearingimpaired students and students with speech impediments. He joined the chess, accounting, acting and
foreign language clubs. He even tried out for the baseball team but didn’t make it. “I am about as athletically
coordinated as a 70-year-old-man with arthritis in both
knees,” he said, laughing.
A: At the University (of Houston), my concentration was
fiction. I switched to creative nonfiction after taking courses from writer Nick Flynn. He told me that what I’d written
about my life was so rich that I should write a memoir.
I’ve been working on it since then. I hope it will come out
eventually – maybe next year.
*****************************************************************
Kathi Wolfe is a writer and poet. Her chapbook “Helen Takes
the Stage: The Helen Keller Poems” was published by Pudding
House.
Page 14
June 2013
A Long-Ago March to Conquer Fear
By Peter S. Kahrmann
Sometimes facing what scares us the most, entering
the environment that scares us most, may mean going
for a walk. In my case, leaving my home scared me the
most. And the walk? Well, it actually was something of a
march.
I once asked a close friend why people ask me or encourage me to write about my life -- particular times in it,
to be precise. “Because it’s true,” she said. As surprising as her answer might sound to some, it made sense
to me. Pretty much anything about my life that is, in any
way, extraordinary or unique is so in spite of me, not because of me. I am well aware of this fact. Life happens
to us whether we like it or not.
And so it was that in 1985 after being held up and shot
a year earlier and then held up at gunpoint and not shot
some six months later that the idea of leaving my house
for any reason (I lived in New York City’s Lower East
Side at the time) was out of the question, or so every
fiber of my being -- physical, spiritual, psychological and
emotional -- had concluded.
But, thankfully, my friend Dane lived upstairs from me.
Then, as now, he was a loyal, loving friend, and then, as
now, he had an uncanny talent for identifying what was
necessary to fracture, or begin to fracture, the viselike
disabling grip some of the more difficult things in life
have on us. In my case, it was my heartfelt reluctance
to step foot out of my house.
Just days after the second holdup, Dane visited me.
This is how I remember it:
“It’s time to march,” Dane says. “You’ve backed I don’t
know how many people through hard times. Today’s
your turn. I’m backing you. We’re gonna march.”
“March?”
“Yes. We’re going for a walk. We’re going out and
march. You have to move. All I want you to do is stay
with me as best you can. You don’t have to talk; just
keep walking.”
I am frozen in place, terrified. I can feel my body and
my veins ice over. I can barely move. But I know that I
trust Dane, and I know that I can go out the door with
him although I don’t know what will happen to us. Here
I am, the man who used to protect his friends, male and
female, thoroughly stripped of all his armor, incapable of
protecting himself, much less anyone else.
INDEPENDENCE TODAY
Dane persists. “Come on, Pete. You can do it. Look at
what you’ve been through. We’ll just go walk. We don’t
have to stop anywhere, talk to anyone. We’ll just walk.
March.”
I nod.
A few minutes later I am following Dane west on Houston Street. The day isn’t just hot, it is sticky-hot, and I
am sweating. My eyes stay glued to Dane’s back. Just
keep moving and don’t stop, I think. I watch his stride. It
is powerful, defiant. I know this man is my friend. He’s
like a brother, and he loves me, and he wants to keep
me alive, I think. We don’t talk because we don’t have
to talk – because Dane probably knows I can’t talk anyway. We just walk. We march.
Dane is in front of me, leading the way; my eyes cling
to the comforting presence of his back. I am afraid to let
go. I want to scream but know I am incapable of making a sound. For the life of me, I do not understand why
people are not staring at me. I am sure I am lurching
about, my body movement awkward, out of sync.
We walk 19 blocks to Broadway, turn left and head
south, downtown. I had hoped we were simply going to
turn around and head back home. I hold tight to Dane’s
back with my eyes. I can barely keep up. From time to
time he turns his head, checks on me, and says: “We’re
marching, bro. We can do this. We keep marching. This
is our march.”
People move past us in blurs, foreign shapes and
smells. Everything feels alien; nothing is in focus. Everything is a shimmering blur except the back of Dane’s
shirt and the welcome, familiar smell of sun-warmed
pavement. I know there is traffic moving. I hear horns,
but none of their sounds seem to reach me. I am in a
shell, marching, sweating, following my friend, whom I
love and who is fighting to keep me alive because I am
not far from not being alive, and I think he knows this.
We are getting farther away from home, and I am afraid
that, at any moment, someone will kill me.
We keep marching.
We cross Prince Street and Spring Street and then
Broome Street. Soon we are walking through Little Italy.
My walking movement feels awkward, out of sync, as if
I could lose my balance. I feel like I must be staggering,
but I know this can’t be true because no one is watching
me or staring at me.
The joyous dancing scents of Italian food fill me and
provide brief respite from the terror. The scents of fruit
March
Continued on page 15
INDEPENDENCE TODAY
March
June 2013
Continued from page 14
from the fruit stands, an amalgam of Italian sauces, fill
the air, an undercurrent of fresh bread their bedding. The
musical sounds of the Italian language, a symphony of
vowels and laughter, swirl in the air around me. I keep
marching.
I am bleary-eyed and at some point realize we are beginning to head back toward home, and it dawns on me
that I have not once asked Dane to stop walking, and I
have not once asked him to please get me home. I don’t
understand why this march is important, but I know it is. I
don’t need to understand why; I just need to know.
What has happened to me? My lungs can barely find the
air to breathe, my legs the strength to move, my eyes the
vision to see. I am numb inside and out and back again.
There is a simmering electric current throughout me. It’s
fear, and it’s everywhere. I am outside on the streets,
and I know I can be shot and killed at any time, and I
know this because twice in a matter of months someone
has tried to do exactly that to me.
Finally, I am home again. I am safe, relieved. I give Dane
a hug and thank him profusely.
The next morning I see a slip of notebook paper has
been slipped under my front door. There, in large letters,
is one word: MARCH.
****************************************************************
Peter S. Kahrmann is a writer and an advocate for people
with disabilities.
Father, Son
Continued from page 11
ried a prison term of more than 60 years, Cubby was
found not guilty of all charges after a drawn-out, highly
expensive trial. Today, Cubby, who has a girlfriend, is still
interested in science, though he is no longer involved
with explosives. He and his girlfriend speak about Asperger’s to young people.
John Elder Robison was born in Athens, Ga., and grew
up in the 1960s before people knew of Asperger’s syndrome. In addition to his other memoirs, he wrote the
book “Be Different.” His business, J. E. Robison Services, restores and services European cars. He is on many
committees and review boards, including the International Society for Autism Research, the Interagency Autism
Coordinating Committee of the Department of Health
and Human Services, and the Centers for Disease Control.
In a recent telephone conversation, John Elder Robison
and Cubby touched on a wide range of topics from how
Asperger’s is both a disability and a gift to the difficulty
Page 15
of reading social cues to being a natural storyteller. Excerpts of that conversation follow. (The interview with
John Elder Robison appears first; the chat with Cubby is
next.).
John Elder Robison:
Q: You first heard about Asperger’s when you were 40.
You were in a restaurant with a friend who said you might
have it. What was it like for you at that moment and when
you were formally diagnosed with Asperger’s?
A: I didn’t know what Asperger’s was when I first heard
about it. The only kids with autism who I knew about
didn’t talk at all. (But) I’d felt different always, and I didn’t
know why. Learning that I had Asperger’s made me understand – it made my life better.
Q: What made you become a writer? What sparked you
to tell your (and Cubby’s) story?
A: I love to tell stories. People say I’m a natural storyteller. I was asked if I’d ever try writing. I said, “Well, sure!”
It’s easy to tell stories. I wanted to speak about being
different, having Asperger’s and parenting. I basically sat
down and wrote “Look Me in the Eye.” I told the story of
being a father in “Raising Cubby.”
Q: Would you talk about the difficulty that people with
Asperger’s have with reading social cues and how, especially as children, they can be bullied?
A: People with Asperger’s have difficulty with social cues.
Kids on the (autism) spectrum have a hard time reading
the feelings of other people. People say teaching social
skills to kids is complicated, but it’s basic. It’s teaching
manners, teaching them to care. When Cubby was a kid,
I’d see him getting into a tussle with another kid. I’d say
(to him): “Say, that’s a nice toy! Can I see it?” Don’t say,
“I like elephants!” Don’t grab it out of his hand. It’s basic
stuff.
Kids with Asperger’s a lot of times are singled out -- they
can be mistreated because it’s an invisible disability. If
you look at a blind guy, you can tell that he doesn’t see
facial impressions. But, looking at Cubby or me, you
don’t expect us to be oblivious (to social cues, such as
body language). You assume that we’re deliberately
ignoring you. Another thing: People with Asperger’s often
have clear, precise speech. You don’t expect them to say
the (socially) wrong thing.
Q: You’ve said that there’s too much talk (of Asperger’s)
as a disability. Would you talk about how you view it as
not only an impairment but as a difference -- a gift?
Father, Son
Continued on page 16
Page 16
Father, Son
June 2013
INDEPENDENCE TODAY
Continued from page 15
A: Yes, Asperger’s is a disability. I wouldn’t dismiss the
disability that people with Asperger’s or autism (especially those on the spectrum who are nonverbal) deal with.
But it (Asperger’s) also makes us different – it makes us
who we are. People with Asperger’s have a greater ability to focus -- to concentrate -- to systematize. It gave
me insight into electronics and rock ‘n’ roll when I was
younger that contributed to my success. It was something I wouldn’t have been able to do if I was an ordinary
(without Asperger’s) kid. [Robison created electronic effects for the band Kiss.]
Q: What is your concern with current autism research?
A: Hundreds of millions of dollars have funded promising
original research into promising therapies for intervention
for autism. Yet this knowledge isn’t getting out to clinicians and others who help those who need the help. A
clinician anywhere ought to be able to find information -a guidebook -- on different aspects of autism -- from challenges facing people on the spectrum who don’t speak to
the gastric problems of some people with autism.
Cubby Robison:
Q: What does having Asperger’s mean to you?
A: Having Asperger’s is the way I am. It’s how I’ve always been since I was little. Before I was diagnosed
with it, I knew I was unlike the other kids. Asperger’s put
a name to it. It wasn’t a revelation. I already knew what
was there. It’s hard to describe feeling different. I just
knew that some people were my sort of animal, and that
everyone else seemed like a different species. It was
apparent at an intuitive level. In elementary school, one
friend was like me. Two friends were not like me. To me,
there was a clear difference in how we seemed to think.
Q: Would you describe your feelings about your trial (for
making explosives)? Thankfully, you were acquitted. But
it must have been highly stressful.
A: I thought the trial was going to be the end of my life!
I thought they’d put me in jail for 80 years! I wondered:
Would I have to be sent away forever to another country? I wasn’t prepared. I didn’t complete Eagle Scouts
because of it. I couldn’t go to school for a semester. I
was paranoid. To say I was stressed is an understatement! I wasn’t trying to hurt anyone.
Q: You and your girlfriend, who also has Asperger’s,
speak to groups about love and relationships. What’s
dating like for folks with Asperger’s?
A: I tend to think people with Asperger’s and autism
flock together. You get along better. My first and present
girlfriend both have Asperger’s. We think similarly ...The
Author John Robison/Augusten Burroughs
skills of small talk necessary with neurotypicals (people
without Asperger’s) aren’t as necessary with our own
kind. We often have the best luck meeting people and
socializing in special interest clubs (such as computer or
chemistry clubs) instead of at parties.
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Kathi Wolfe writes frequently about disability and the arts. Her new
poetry book, “The Green Light,” is forthcoming from Finishing Line
Press.
Ne’eman
Continued from page 10
makes somebody suddenly not autistic, and many of us
wouldn’t want to take it if there was. So we advocate for
the research agenda to instead focus on improving the
quality of services.
Q: What should be the guiding principles of those creating and funding public policy affecting people with autism?
A: We prefer that the autism service provision system
doesn’t repeat the mistakes the disability service provision system has made and begun to move beyond. The
big priorities are community inclusion, equal protection of law, hearing self-advocate voices. Let’s focus on
empowering us to have happy lives as autistic people,
rather than trying to force us to pretend that we’re not
autistic people.
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Mike Ervin is a writer who lives in Chicago. His blog, “Smart Ass
Cripple,” appears at smartasscripple.blogspot.com.