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					AAPDnews
A Quarterly Newsletter for AAPD Members

WINTER 2007

Emerging Leaders to Receive National Recognition for their Disability Rights Work

John Register and TyKiah Wright were selected to receive the 2007 Paul G. Hearne/AAPD Leadership
Awards for emerging leaders with disabilities. They will be honored guests at AAPD‘s Leadership Gala
on March 7 in Washington, DC.

Register, of Colorado Springs, Colorado, is a Gulf War veteran, Paralympic medal winner and a strong
disability rights advocate who believes that participation in sports can enrich the lives of people with
disabilities and change public perceptions towards the disability community.

As the Associate Director of Development and Outreach for the U.S Paralympics, Register was
instrumental in the launch of the U.S. Paralympic Academy in 2003. Register is also a member of the
State Department‘s Advisory Committee on People with Disabilities.

Wright, of Columbus, Ohio, used her personal experience and entrepreneurial skills to establish
WrightChoice, Inc, an advocacy organization for people with disabilities. WrightChoice offers an Intern
Program that builds bridges between college students with disabilities and the workforce, and
complements their educational experience with on-the-job training. The firm‘s Good Business Training
program addresses diversity related training needs for employers by offering seminars focused on
disability awareness, the use of technology in the workplace, and leadership. Wright has received many
honors for her work in disability advocacy, including being named one of Ebony Magazine‘s ―2006
Young Leaders of the Future.‖

For additional biographical information about the award recipients, please visit the AAPD website:
www.aapd.com.


Grassroots Activist and Organizer to be Recognized by National Disability Community
Mark Johnson, a nationally-recognized activist, community organizer, and Director of Advocacy at the
Shepherd Center in Atlanta, Georgia, will receive the highly-prestigious 2007 Henry B. Betts Award on
March 7 in Washington, DC.

 Johnson, who sustained a C 5-6 spinal cord injury at the age of 20, has dedicated his life to creating an
identifiable sense of community among people with disabilities. He ran the Transitional Living Program
at Holistic Approaches to Independent Living (HAIL) in Denver, Colorado, and was subsequently its
Director of Advocacy. In 1984, he helped to create Americans Disabled for Public Accessible
Transportation (ADAPT), a grassroots-driven organization that has been an effective force for change in
the national disability rights movement. Johnson‘s visionary and planning skills helped to make the
Spirit of the Americans with Disabilities Act (ADA) Torch Relay, which was hosted by AAPD, a reality
in 2000. Johnson is a founding member of the board of the Healthcare Georgia Foundation, which
awards more than $4 million annually to organizations throughout Georgia. In addition, he helped to
create the Brain and Spinal Injury Trust Fund, which provides independent living services to thousands
of people with brain or spinal cord injuries throughout Georgia.
Additional biographical information about Johnson can be found on the AAPD website: www.aapd.com.


Disability, Social Justice and Emerging Technologies
by Patricia Berne, Project Director,
Project on Race, Disability and Eugenics, Center for Genetics and Society

Every week we can hear it on the news – identification of the ―skin tone gene,‖ a wealthy U.S. couple
―rents‖ an Indian woman‘s womb to carry their genetic child, women being exploited in the trafficking
of eggs – and every day in fertility clinics, women are choosing embryos that have been selected
because they are ―free‖ from genetic markers associated with disability. This complex web of genetic,
social and economic phenomena has been woven with threads of biotechnology, specifically, emerging
assisted reproductive and genetic technologies (ARGTs).

ARGTs are developing at breakneck speed, far more quickly than informed public dialogue. A social
justice vision including a respect for human diversity and the lives and rights of people with disabilities
must be developed and integrated into the development and applications of these powerful new
technologies.

Selection Practices
ARGTs include technologies that ―test‖ sperm and/or embryos for a particular genetic characteristic. In
conjunction with in-vitro fertilization, a woman, couple or prospective parent can use sperm sorting or
PGD (pre-implantation genetic diagnosis), then select for or against a given characteristic. Choices are
made, for example, to implant an XX or an XY embryo, or to implant an embryo without the genetic
markers associated with Down syndrome, spinal muscular atrophy, or early Alzheimer‘s, to name just a
few.

Historically, women or couples have used in-vitro fertilization to address fertility related concerns. Yet
with emerging ARGTs, prospective parents with no fertility related concerns have become consumers in
the fertility industry, for the purposes of selecting – and de-selecting – eggs, sperm, and embryos.

The Implications
The complexities of ARGTs are truly revealed when we consider their political and historical contexts.

The current public dialogue often references individual choices, for example, a couple selecting an XX
embryo based on gender- based hopes and expectations of their new family member. Yet the social
implications of these individual choices must
be part of the debate as well.

Is it a right to choose the ―type‖ of child we will conceive? How are we to understand the value of
people with Down syndrome, for example, while the number of children with Down syndrome is
declining as a result of de-selection? Can society both affirm the rights of people with disabilities and
select against our existence?

The idea of ―improving the human species through genetics‖ is not a new one. In fact, this idea was
central in the eugenics movement, a shockingly popular movement in this country that resulted in the
sterilization of approximately 60,000 people characterized as genetically ―unfit.‖ It is true that these
policies were publicly acknowledged as unjust and apologies have been made. And, it is also true that


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disability, race, sexual orientation and gender variance are still often viewed as troubling and framed as
genetically problematic, paving the way for human rights abuses.

The concern about selection is straight-forward – that in the absence of a broad and informed social
dialogue, the use of emerging reproductive and genetic technologies may lead to a eugenics future.

Genetic ―fixes‖ will not counter disability oppression or the lack of resources for families with disabled
members. Informed public debate and effective social policies will.


Keeping the World Safe for Disability
Why We Need to Step Forward

Dear Members:

This March, the United States and countries around the world will have the opportunity to ratify a new
United Nations Convention on the Rights of People with Disabilities. The purpose of the convention is
―to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental
freedoms by all persons with disabilities, and to promote respect for their inherent dignity.‖

The product of years of effort by member states and disability organizations around the world, the U.N.
Convention will inspire countries to pass legislation and call attention to the many human rights
challenges still facing people with disabilities across the globe.
Three developments that played out in December and January provide important reminders of the need
for a renewed commitment to basic human rights for people with disabilities in the U.S.

In December, National Public Radio (NPR) reporter Joseph Shapiro called attention to the case of Misty
Cargill, an Oklahoma woman with a mild intellectual disability, who had been turned down as a
candidate for a needed kidney transplant because of her ―lack of mental competence‖ to grant informed
consent to the procedure. Notwithstanding the fact that her own physician had determined that she was
perfectly competent, Ms. Cargill was not even permitted to get on the list for a transplant because of a
discriminatory policy that apparently is not uncommon in the world of transplant centers.

An op-ed published on Christmas Day in The Washington Post called attention to this case. Special
Olympics Chairman, Timothy Shriver, noted that, ―people with intellectual disabilities who have been
lucky enough to get a transplant do as well if not better than non-disabled people, probably because of
their fidelity to instructions and their network of caregivers and supporters.‖

Moving from Oklahoma to Washington State, we learned in January from the parents of a nine-year-old
girl with an intellectual disability named Ashley about a special treatment they had performed on her at
age six to prevent her from growing to her full adult size. The parents pushed for this procedure so that
Ashley would be easier for them to care for as an adult, and so she could be spared the pain and
discomfort of having a fully formed adult body. In this case, where the six-year-old was truly incapable
of giving informed consent, a medical ethics review board at Children‘s Hospital in Seattle approved the
removal of the girl‘s uterus and breast buds, as well as experimental estrogen treatment. This was all
done despite the fact that there was nothing wrong with her pre-pubescent reproductive system.

A fully competent adult with a mild intellectual disability is turned down for a medically necessary
kidney transplant while physicians sign off on an experimental and unnecessary invasive procedure for a

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six-year-old with a significant intellectual disability. What is wrong with this picture? Who are the
decision makers that guard our health care system, and on what basis are they making their decisions?

Another troubling development came in January from the American College of Obstetricians and
Gynecologists (ACOG), when it recommended that ALL pregnant women get prenatal testing for Down
syndrome. Given the estimated 85-90 percent termination rate among prenatally diagnosed cases of
Down syndrome in this country, there is good reason to fear the impact of these recent ACOG
recommendations. Patricia Bauer, the mother of an adult woman with Down syndrome, lamented this
situation in her Washington Post op-ed that responded to the ACOG recommendation. She wrote that
Americans continue to have a ―fundamental societal misperception that the lives of people with
intellectual disabilities have no value – that less able sometimes equates to less worthy.‖

In the disability rights movement, we promote the idea that disability is a natural part of the human
experience that in no way should limit a person‘s right to make choices and participate fully in all
aspects of society. That idea is embodied in laws like the ADA and the new U.N. Convention on the
Rights of People with Disabilities. And yet, when tough decisions are being made in real cases, our
medical gatekeepers too often let their own deeply held biases impact their decision-making.
If we are truly committed to building an inclusive society, we need to have a great deal more discussion
about how the fields of medicine and bioethics can be informed by a better understanding of the realities
of living with a disability. We also need to address the longstanding tendency of science and medicine to
undervalue the quality of life and dignity of individuals with disabilities.

In the last Congress, Senators Kennedy and Brownback introduced a bill that would require parents to
receive better information about disabilities and supports available for families with disabled children at
the same time that they receive prenatal diagnoses of Down syndrome and other disabling conditions.
Passing that bill in this Congress would be an important positive step.

More fundamentally, I hope we can use the ratification and implementation process for the new U.N.
Convention to force a deeper conversation on these and other important subjects in this country and
around the world. We need to define exactly what we mean by the ―fundamental freedoms‖ and
―inherent dignity‖ of our brothers and sisters with disabilities.

Andrew J. Imparato
AAPD President and CEO


We Need Your Help to Restore ADA
In recent years, a number of Supreme Court decisions have significantly reduced the protections
available to people with disabilities within employment settings. The courts have been quick to side with
businesses and employers, and have ruled against people with disabilities who challenge employment
discrimination a staggering 97 percent of the time. Many of these decisions have been made before the
person has even had a chance to demonstrate how their employer treated them unfairly. In addition, the
courts have created an absurd Catch-22 by allowing employers to say a person is ―too disabled‖ to do
the job, but not ―disabled enough‖ to be protected by the ADA.

People with conditions such as epilepsy, diabetes, HIV, cancer, hearing loss and mental illness who
manage their disabilities with medication, prosthetics, hearing aid or ―mitigating measures‖ are often
viewed as ―too functional‖ to have a disability. As a result, they are denied ADA protection from
employment discrimination. Other individuals have been denied jobs, or even fired, because an

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employer mistakenly believes they cannot perform various duties. More appallingly, some individuals
have even been terminated or denied employment because the employer does not want ―people like
them‖ in the workplace.

To combat this situation, AAPD needs your compelling, real-life stories of disability- based employment
discrimination to help us make our case to Congress. Many of the Supreme Court‘s narrow
interpretations of the ADA have significantly harmed people with disabilities in employment.
It‘s time to restore the original scope and intent of the ADA. AAPD, in conjunction with the Consortium
for Citizens with Disabilities (CCD), will use these personal stories to build bipartisan support. We will
also use them to educate members of Congress, so they can readily understand the situations faced by
people with disabilities, and focus on the need for a legislative fix to the ADA.

Anyone who has experienced employment discrimination on the basis of his or her disability can assist
with this effort.

This includes people who:
       • Have or haven‘t brought their claims to court.
       • Didn‘t bother to go to court because they were told or believed they could not prove they have
       a disability.
       • Are veterans with disabilities.

Help us by sending an email summary of your story, detailing what happened, when it happened, and
how. Also be sure to indicate if your situation was resolved. Please be sure to document any denials of
reasonable accommodations, or instances of hiring discrimination, discriminatory firing, layoffs or
harassment. We will not use your name without your express permission.

Send your stories to Anne Sommers, Policy Counsel at AAPD. You may email her at
aapdanne@earthlink.net. You may also call on (202) 457-0046 (V/TTY) or toll-free at (800) 840-8844
(V/TTY). Every story helps support our cause.


The Ashley Treatment
Disability Advocates Compare it to Eugenics

In October 2006, two doctors presented a case report in the Archives of Pediatric and Adolescent
Medicine outlining a new application of a decades-old therapy to restrict growth — a multi-step process
available to radically alter the body of a young child with developmental disabilities for — as the
argument goes — purposes of improving the quality of life of both the child and the caregiver.

At the request of her parents, and with the blessing of a hospital‘s 40-member ethics committee, doctors
stripped this child of her appendix, her uterus and her budding breasts, and prematurely fused her growth
plates through administration of hormone treatments, which prevented the additional eleven inches of
growth and fifty pounds of weight doctors forecasted her to have gained had there been no intervention.

Despite the expectation of an average life span, even as an adult, she will forever retain the body of a
child.

Her name is Ashley.


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In late December, Ashley‘s parents launched a weblog (http://ashley treatment.spaces.live.com/) to
address commonly asked questions about the treatment (which they dubbed the ―Ashley Treatment‖), as
well as their own decision-making thought process on the matter.

Because she cannot sit up, walk, speak or feed herself, Ashley‘s family and doctors rationalized growth
restriction as a way to maintain her at a manageable size to facilitate in-home care. As for Ashley‘s
uterus, her family claims she has no use for it and that its removal will ensure she avoids the physical
discomfort of menstruation, the possibility of cancer, and the chance of pregnancy if she was assaulted.
Doctors describe the hysterectomy as sparing Ashley and her family, ―expense, pain, and
inconvenience.‖ Her family also maintains she has no need for developed breasts either, claiming the
breast bud removal ensures their daughter will be more comfortable and will not endure the possibility
of fibrocystic growths, cancer, or sexual abuse by a future caregiver.

Disability advocates across the globe have reacted strongly to the news. The first impulse of many is to
draw parallels between the Ashley Treatment and the American eugenics movement in which over
60,000 people with disabilities were forcibly sterilized due to their differences. While the doctors state
that the Ashley Treatment is only appropriate for nonambulatory, profoundly impaired children, why
wouldn‘t the same rationale apply in other disability populations or stretch to include other ―convenient‖
medical measures, some advocates ask? Would a developmentally disabled young boy receive
castration? Would quadruple amputation of motionless limbs be an allowable convenience measure, as
well?

In most instances, advocates empathize with the family‘s circumstances while passionately condemning
the treatment. Disability activists in Chicago protested at the headquarters of the American Medical
Association, demanding a state and federal investigation into the treatment itself. They also asked for
inquiry into whether or not Ashley‘s individual rights may have been violated. Other advocates are
issuing a call for the inclusion of people with disabilities on hospital ethics committees. Some groups are
focused on using the news story to draw further attention to the significant need for adequate social and
home-health supports for families like Ashley‘s. As one advocate remarked, ―Our society must adapt to
the needs of all children, disabled and non-disabled alike. Children must not be adapted to fit our
society.‖

Whether it‘s through an individual blog post, a press release, protest or television interviews, the
disability community here and abroad has united over a commitment to the value that regardless of one‘s
level of disability, everyone is entitled to full and equal human rights. Ashley is her own whole person,
despite the dependence she will always have on others for the most basic of her human needs. Medical
interference with a child‘s physically healthy body in the interests of the convenience of her caregivers
is an egregious violation of her physical autonomy and human rights.

To stay informed on this and other disability-specific bioethical concerns, visit the AAPD website at
www.aapd.com/News/bioethics/ indexbioethics.php. Also be sure to sign up to receive Justice For All
email news alerts, which periodically highlight these topics at www.aapd.com.

Anne Sommers works as Policy Counsel at AAPD, and is AAPD‘s newest staff member. Informed by
her own experience with two gene-linked disabilities, Anne brings both sensitivity and sensibility to the
area of bioethics policy development.




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Accessible Paper Currency
In 2002, the American Council of the Blind (ACB) sued the Department of the Treasury and alleged that
it violated section 504 of the Rehabilitation Act, by continuing to design and issue paper currency that
cannot be distinguished by blind and visually impaired people. In the time since the suit was filed, there
has been a great deal of discussion on the subject. To date, however, not much progress has been made
in addressing the situation. ACB encourages its members and affiliates to keep this issue at the forefront
by contacting and speaking with their local congressional representatives, as well as newspapers, radio
and television stations. Let them all know how important it is for everyone to have access to money, as
well as effective means to identify the denominations.

For more information, visit: www.aapd.com/News/court decisions/indexcourt.php.


Taxis For All North America
United Spinal Association administers the Taxis For All North America website, ww.taxisforallNA.org,
where tools and updates are available to foster local accessible taxicab advocacy. This site was
established to complement the introduction later this year of the Standard Taxi, www.standardtaxi.com,
a factory-built accessible sedan vehicle that can be used in taxi, paratransit and other ‗special‘
transportation services, with seating for four passengers in the rear compartment, and an additional
ADA-compliant space up front for wheelchair or scooter users.


Survey Finds Medical Equipment is Not Accessible
A recently conducted National Consumer Need Assessment found that users with disabilities are
experiencing lack of access to a variety of medical equipment. The survey looked at examination tables,
x-ray equipment, rehabilitation/exercise equipment and weight scales. It found 75 percent of the persons
surveyed had moderate or greater difficulty with examination tables, over 68 percent had moderate or
greater difficulties with x-ray equipment, 55 percent had moderate or greater difficulty with
rehabilitation and exercise equipment and 54 percent had moderate or greater difficulty accessing weight
scales. The survey also found that 50 percent of those surveyed reported moderate or great difficulty
with examination and procedure chairs, such as those typically used by dentists or for other outpatient
medical services.

The survey was funded by the National Institute on Disability and Rehabilitation Research (NIDRR),
and conducted by the Research Engineering & Research Center (RERC), which includes collaborators
from Marquette University, Western University and University of California (San Francisco). Almost
500 persons participated in the research, which will be used to create new standards for accessible
medical equipment. The research will also be used to help reduce the costly health disparities among
people with disabilities by removing barriers to health care services. To see the Needs Assessment
presentation and for further information, please visit
http://www.ilru.org/html/training/webcasts/archive/2007/01-04-JK.html.


Disability Report Required in AT&T/BellSouth Merger
AT&T has agreed to deliver a report describing its efforts to provide high quality services to customers
with disabilities as part of the merger agreement made between BellSouth and AT&T. The agreement
was approved by the Federal Communications Commission (FCC) on January 29, 2007. The $82 billion
merger creates a giant telecommunications network comprising almost half of all telephone land lines in
the U.S., the wireless network of Cingular, as well as significant television, music and web services via

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its broadband system. The disability report will address AT&T‘s efforts to provide service to customers
with disabilities and is due within 12 months of the merger‘s closing date. The agreement to produce a
disability report resulted from multiple disability coalition efforts, including AAPD, who commented
into the docket on the merger.


Accessibility Lives Here
Top Cities for Disability Friendliness and Outreach

The National Organization on Disability (NOD) has announced that Berkeley, California, and Chicago,
Illinois, have been chosen as the winner and runner-up respectively in the sixth-annual Accessible
America Contest. These cities are being heralded as national models for innovative programs to promote
community inclusion of people with disabilities. For additional information, visit www.nod.org.


Telecommunications and Technology Policy Initiative
Digital TV Transition: Consumers with Disabilities Beware!

TV stations in the U.S. are now showing some digital programming and most will continue to provide
analog programs through February 17, 2009, when TV stations will cease broadcasting on their current
analog TV channels. At that time, stations will move programming to four (digital) TV channels. Cable
and satellite TV subscribers should contact their providers to see if any new equipment is needed. Over-
the-air ―free‖ TV viewers should still be able to use their analog TV sets when analog TV service stops
in February 2009 by using a set top box converter, available in retail stores in 2009. AAPD is keeping a
keen eye, however, on this DTV transition, as there will be a discount coupon give-away program for
the digital-to-analog set-top box converters. There are questions about the reach of coupon distribution,
and whether the manufacturers of the converter boxes will ensure closed captions will be passed through
to the analog TV sets. There is also a question as to whether video description for blind viewers will be
heard. Another concern is whether the converter-boxes are designed with simple user interface/controls.
It‘s too early to tell whether there will be problems, but consumer action may become necessary. Please
stay alert for updates on DTV transition.

For more information, contact Jenifer Simpson: AAPDJenifer@aol.com.


Disability Accessibility in Health Information Technology
Health information technology (HIT) refers to electronic products and systems that are intended to
improve quality, prevent errors, reduce costs, increase efficiencies and decrease paperwork in health
care service delivery. They typically involve databases and their management, telemedicine tools, and
new technologies for evaluating and managing personal health. The Medicaid Commission‘s ―Final
Report and Recommendations,‖ issued December 29, 2006, included a set of recommendations for HIT.
One of these recommendations was generated by AAPD and addressed accessibility for persons with
disabilities.

The recommendation stated that ―HHS, state Medicaid agencies, and their vendors, shall assure that
health information technologies that are acquired or upgraded continuously meet federal and state
accessibility requirements.‖ This requirement means that Medicaid beneficiaries should be able to
access their health record information in formats that meet their communication preferences. If
implemented, this would mean that federal government and state Medicaid agency acquisitions and

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purchasing upgrades meet federal and state accessibility standards, such as Section 508 of the
Rehabilitation Act. For instance, an accessible HIT purchase would allow a person with vision disability
to review their electronic health record the same way others do. It might also mean that a Deaf person
using telecommunications relay services would have the same ability to call in to their record and
retrieve information the way a voice-based telephone user may.

Another Medicaid Commission recommendation of significance to persons with disabilities was that
―All Medicaid beneficiaries should have an electronic health record by 2012.‖ This recommendation
included a caveat that the electronic health platform ―… follows accepted privacy standards.‖

 In coalition with many other groups, AAPD has supported strong patient privacy language in all
legislation dealing with health information technology affirming that giving patients control over who
can access their personally identifiable data over electronic health data networks should be the privacy
standard for HIT. AAPD has also submitted recommendations to the U.S. Health & Human Services
agency to ensure people with disabilities can easily access Electronic Health Records (EHRs) and
continues to monitor HIT initiatives for accessibility and usability.

AAPD Thanks its Sponsors
Outstanding Support Makes Leadership Gala a Success On March 7, AAPD held its sixth-annual
Leadership Gala in Washington, DC. This event could not be possible without the generous
contributions of many sponsors. Their ongoing support is critical to financial subsidizing of AAPD‘s
vital national programming, such as its job shadowing, career exploration, voter registration, get-out-the-
vote and summer internship programs. AAPD extends its deepest gratitude to event Lead Sponsors,
Independence Technology and SAP; to Platinum Sponsor, American Airlines; and to all sponsors.

Visit the AAPD website to see who is supporting AAPD and its disability programming:
www.aapd.com/gala/gala07/gala07sponsors.htm.

“Independence Technology is proud to once again be the Lead Sponsor of this tremendous event, which
recognizes leaders in the disability community. Our company is dedicated to providing people with
disabilities with greater freedom and independence, and we want to congratulate and salute all of this
year’s award winners.”
Gregg Howard, Vice President, Independence Technology
Member, AAPD Board of Directors

“As the largest cross-disability membership organization in the U.S., AAPD is dedicated to ensuring
economic self-sufficiency and political empowerment for Americans with disabilities. SAP Americas is
proud of its long-term partnership with AAPD to advance its mission of social change.”
Rick Knowles, Senior Vice President, Operations & Communications, SAP Americas Member, AAPD
Board of Directors

“American Airlines is honored to be a sponsor of the 2007 AAPD Leadership Gala. The national
leadership that AAPD offers as an advocate for individuals with disabilities is invaluable and
unparalleled. In addition to our continued long-term support of AAPD, American Airlines also supports
dozens of organizations that aid persons with disabilities who live in communities that we serve
throughout the U.S.”
Will Ris, Senior Vice President – Government Affairs, American Airlines



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Starchild is Only the Beginning
An Interview with David Grigorian

David Grigorian is a 2004 recipient of an Award of Excellence from VSA arts for Starchild – one of just
15 awards presented to young artists with disabilities around the country. As part of this distinguished
honor, his work was displayed at the Smithsonian Institution in Washington, DC. Starchild was featured
at the 2007 AAPD Leadership Gala. Currently, David is a student at Rocky Mountain College of Art and
Design, majoring in design.

AAPDnews recently had an opportunity to talk with David about his work and the factors that influence
it. Here‘s what we learned:

Personally, who has been the most important influence on your life?
My family. They have provided me a lot of help and influence. Even today, I rely on them to help me
move on and become independent. Another influence was my only childhood best friend, who shared
my passion for art. My uncle is an artist, and he was the first artist I knew. My early memories of art
were his paintings.

What influences your art the most? Is it at all influenced by your hearing loss?
Certain music and songs have influenced me. Currently, my favorite ones are by Sarah Brightman.
Movies, nature, and my imagination and story telling skills also influence my art. Because of my hearing
loss, I tend to draw people, or other made-up characters, without any trace of ears. Hearing loss made
me use my eyes to observe and learn about this world, so I give eyes important attention and
significance in my art.

How do you continue to generate fresh ideas for your work?
I‘m able to generate fresh ideas for my work because my inner world is alive. As I grow, gain new
perspectives on the world, learn new things, meet new people, participate in activities, overcome
hardships, and mature, I get more inspired. My inner world also grows stronger and generates new ideas
based on what I‘m experiencing at the moment.

In 2004, you received an Award of Excellence from VSA arts. What did that mean to you?
The experience reassured me that I was heading in the right direction. It confirmed that my long years
dedicated to creating art weren‘t in vain. Since my childhood, my art has grown up with me. In 2004, it
was strong enough to help me break out of my shell and get recognized by the art community. The
experience gave me more courage to pursue my artistic practice, to connect to the art world, and go to
art school to fine-tune my skills. I learned how to present my art to the public, how to approach art
receptions, and how to face the media. While Starchild may have made a tiny ripple in the world of art,
it made me a stronger artist and gave me the confidence needed to tackle other art projects and
challenges. Starchild opened a gate to my inner world for the first time. That gate has been open ever
since.

You have lived in Armenia, Japan and the U.S. What are your perceptions of how the different countries
treat and accommodate people with disabilities?
In Armenia, public buildings don‘t have ramps, so a person in a wheelchair is confined to their
apartment building. There are special schools for the blind and Deaf, but I went to public school. The
teachers didn‘t know about my hearing loss, and neither did I. Armenian TV shows don‘t have the
captions for the Deaf and hard of hearing. The government doesn‘t provide assistance for the people
with disabilities, and most do not have jobs.

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In Japan, the government assists people with disabilities to some extent. Students with disabilities get
some extra help at schools. Later, the government offers some assistance in finding jobs. Japan has
communities where people with disabilities meet and help each other — much like the U.S. Most
Japanese public buildings have ramps.

In the U.S., I received help from a special education teacher in high school. Students with special needs
get help and are accepted at schools. In America, it seems that all the public places have ramps, even the
public transportation. Here, television programs have captions for the Deaf and hard of hearing. I‘ve met
and heard more about people with disabilities here then in either Armenia or Japan.

What are your career aspirations?
I want to illustrate children‘s books and articles for magazines. I also want to create art for galleries and
write my own picture books. In addition, I would like to write a fantasy novel. In ten years I want to be a
published children‘s book illustrator. Most of all, I‘d like to make a tiny difference in the world.

What advice would you give to other aspiring artists with disabilities?
Stay in tune to the world around you and observe it. Learn what inspires you, your emotions and your
thoughts. Keep in touch with your inner world. Think about what you want your art to communicate,
and what you want to express in your art. Grow, learn, and evolve along with your art. Find your own
artistic style by searching and practicing regularly. Most importantly, create your art with passion, and
believe in both your art and yourself.


AAPD-Cornell Policy Forum –
Social Security: A Disability System for the 21st Century
On January 12, 2007, Cornell University and AAPD collaborated to present their latest forum entitled
―Social Security: A Disability System for the 21st Century – Information and Discussion of the Report.‖
Approximately 50 policy makers, disability advocates, and Hill staffers attended the latest in a series of
forums that address employment policy for persons with disabilities.

Dorcas Hardy, of the Social Security Advisory Board, presented information about general trends of
disability beneficiaries and related expenditures. She stated that one overarching goal for future public
policy development was to place emphasis on one‘s ability to participate rather than one‘s inability – the
focus under which the current system has operated.

Kim Hildred, from the Social Security Subcommittee and House Ways and Means Committee, focused
her remarks on the economic impacts of the current social security trends, and shared statistics from the
Social Security Advisory Board‘s report. Hildred emphasized the need for broad reform and emphasis
on transitional programs.

Alaine Perry, of United Spinal Association, stated that only people with disabilities know when they are
ready to return to work. She emphasized the need to improve administration of existing work incentives
programs, as well as the need to reduce beneficiary fear by ensuring easy re-entry into the workforce,
continued access to healthcare, and access to accurate information.

The final presenter, Connie Garner, Policy Director for Disability and Special Populations for Senator
Edward Kennedy on the Committee on Health, Education, Labor and Pensions, highlighted a number of


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social and economic problems people with disabilities currently face, as well as urgent needs for
legislative fixes.


Disability Mentoring Day Grassroots Focus Works!
Disability Mentoring Day (DMD) is one of AAPD‘s major national programs. At its core, it is a
grassroots organized, resulted-oriented program. With each successive year, the program grows and
evolves, not just in terms of number of participants and organizers, but with tangible, long-term benefits
that address the needs of young people and job seekers with disabilities in every corner of this country.

The program name, however, may be a bit misleading, as AAPD encourages the program organizers (the
local coordinators) to develop longer-term mentoring, internships, and other opportunities, which can
ultimately lead to employment for the mentee participants. Disability Mentoring Day has evolved into a
launching point for greater, longer-term outcomes.

In 2006, DMD was held on October 18. We are learning from the program‘s on-the-ground local
coordinators around the country that it was an effective launching point and there were some extremely
positive outcomes for program participants. Here are just a few examples, which also illustrate the
tremendous geographic diversity of the program:

        •       In Anchorage, Alaska, one mentee received an internship, another mentee was offered a
full-time job, and a third mentee accepted a job offer as a result of the TV coverage about DMD.
        • In Los Angeles, California, a mentee attending college is now being considered for a county
internship.
        • In Highlands County, Florida, three mentees were offered jobs as a direct result of DMD.
Several businesses will become work experience sites allowing potential job seekers to try out a
position. Another local business is starting a mentor program whose participants will include mentees
from DMD.
        • In Chanute, Kansas, a mentee is now being considered for an office job, resulting from DMD
participation.
        • In Detroit, Michigan, seven mentees were given the chance to
participate in a major corporation‘s pilot program that targets jobs for people with disabilities at all
levels of the company‘s retail store operations.
        • In Jackson, New Jersey, a mentee who was having a hard time
in his new school worked alongside a store manager for the day. Duties included stocking merchandise
and practicing customer service skills. It was a good experience for both the manager and the mentee,
and at the end of the day, the store manager informed the mentee of an upcoming job opening and
encouraged him to apply for it.
        • In Broome County, New York, four mentees received long term mentorships at the location
where they had job-shadowed on DMD and another mentee received a full-time job offer.
        • In Lumberton, North Carolina, based on the experience of DMD, a student plans to begin
certified nursing assistant classes at the local community college.
        • In Charleston, South Carolina, several students were offered part-time employment by the
employers they mentored with on DMD.
        • In Knoxville, Tennessee, a mentee secured employment as a result of DMD participation and
another is being considered for a position at a major bank.
        • In Burlington, Vermont, thanks to DMD, a mentee is now doing a long-term internship at the
University of Vermont.


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     • In Seattle, Washington, two mentees are now engaged in ongoing mentorships, resulting from
DMD participation.

The grassroots focus of DMD is the key to its success. AAPD designs and continues to enhance the
overall program, and provides print materials, seeks out and trains local coordinators, and does extensive
national media outreach highlighting why it is critical to the disability community. But local on-the-
ground creativity, knowledge, contacts, outreach and expertise truly support the program‘s success.

For a list of local coordinators in every state, visit www.dmd-aapd.org/ coordlist/coordlist.php. If you
would like to participate in this grassroots career-exploration program as a local coordinator, contact the
state organizing committee in your state, found at www.dmd-aapd.org/docs/stateorg.php. If one does not
yet exist, contact the AAPD national office by email at dmdaapd@aol.com.


Making Sure America Hears our Voices
The right to vote is one of the cornerstones of American democracy. Rather than live under the rule of
kings, queens or dictators, U.S. citizens, 18 years of age and older, have the right to vote for or against
the election of leaders. They are also empowered to register their views on laws and amendments to the
Constitution that have been put forth for public referendum.

For many groups of Americans, however, the right to vote has not come easily. Women in the U.S.
didn‘t have the right to vote until early in the 20th century, when Elizabeth Cady Stanton and a host of
other activists championed the cause. While African-American slaves were freed in 1865, many did not
enjoy the right to vote until after the passage of the 1964 Voting Rights Act. And in recent years,
through the efforts of AAPD‘s Disability Vote Project and other leaders around the country, a growing
number of people with disabilities are finally being able to cast their votes and express their views on
public policy.

―While a growing number of people with disabilities are getting out to vote, and people with disabilities
did make up approximately 10 percent of the total turnout in the 2006 election, two poles conducted by
the New York State Independent Living Council showed that only about half of the total possible
turnout of registered voters with disabilities actually cast votes,‖ observed Jim Dickson, AAPD‘s Vice
President of Government Affairs, who directs the Disability Vote Project. ―Much of the difficulty in
getting people with disabilities to vote rests on the fact that, in many cases, members of the disability
community can be hard to find and identify.‖

Connecting With our Constituents
In many cases, disability organizations are the only groups that actually have lists of people with
disabilities. To strengthen the turnout of disabled voters, a number of grassroots organizations have
taken on the challenge of registering individuals and personally encouraging them to vote. Many of
these groups have found that the most effective way to get people to go to the polls and cast their votes
is to ask them one-on-one. In fact, research has shown that the closer the relationship is between the
asker and person being asked, the more likely the asked person is to vote. Over the past several years,
many well-organized groups, such as the Disability Vote Alliance, have emerged to help structure the
disability vote. While the numbers are improving, there still is, however, a great deal of work yet to be
done.

While establishing an advocacy framework is critical, access to polling places is equally important.
Despite the fact that there have been two major pieces of legislation in the past 23 years focused on

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voter access, there is still a significant way to go before all people with disabilities have unencumbered
access to private and independent voting.

The most recent bill, the Help America Vote Act (HAVA), was passed in 2002 in response to significant
voting irregularities in the 2000 election. HAVA requires that there be at least one accessible voting
machine – usually some sort of computer with a touch screen – at every voting place by December 1,
2007. In 2000, only one county, Riverside, California – had a partially accessible machine in every
voting place.

In 2006, only 40 percent of the country‘s polling places had an accessible voting machine in full
operation. With less than one year to go before the December 2007 deadline, compliance has been less
than impressive. Access has been hindered by a number of factors. New York State, for example, has
simply refused to address the access issue and has not outfitted its polling places with accessible
machines. Other states are pursuing voting technology that generates a paper trail for each vote – a
method that is, more often than not, completely inaccessible to individuals with visual or motor
disabilities.

Voting Requires Access
Another significant challenge revolves around wheelchair access. When the ADA was passed in 1984, it
mandated that polling places should be accessible. Unfortunately, it didn‘t specify when that needed to
happen. A 2000, General Accounting Office (GAO) survey found that 16 years after the ADA was
signed into law, only 20 percent of polling places were accessible. In 2006, another survey found that
approximately 30-35 percent of polling places were accessible. While there was progress, there certainly
wasn‘t enough. Some states have done better at making their polling places accessible than others. As of
the last election, only 29 percent of Indiana and Missouri polling places were accessible. On the other
hand, Maryland‘s polls were approximately 90 percent accessible, while Rhode Island‘s, North
Dakota‘s, and Washington D.C.‘s polls were 100 percent accessible. Where efforts have been made on
the part of the individual states, results have been seen – increased voter turnout of people with
disabilities.

To counter the access issues, some states are experimenting with telephone voting and have seen mixed
success. While voting over the phone may be a good idea in theory, making it work in practice is
another story. In Vermont, Maine, New Hampshire, and Connecticut, telephone votes could be cast only
from phones that were located in polling places. As a result, phone voting only worked if you could get
to the phone. AAPD is currently working with election officials in those states to make it possible for
people to vote privately and independently from their homes or offices in 2008 – and hopefully
eliminating the issues involved with physically getting to the polling place in order to cast individual
votes.

Stay tuned for more information on the Disability Vote Project in coming issues of AAPDnews.


Our Point of View

AAPD to Join New Legal Blogs and Discussion Forums from NPR’s Justice Talking

On February 1, 2007, AAPD joined forces with a number of the nation‘s leading legal analysts and
commentators by regularly weighing in on the issues making headlines in a new online blog and
discussion forum called Talking Justice. Located at www.justicetalking.org, the new feature is a project

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of Justice Talking, the award-winning NPR program that airs in nearly 100 public radio markets and in
140 countries around the globe. The program is broadcast by NPR Worldwide and Armed Forces Radio
Network. AAPD is featured on the thirteenth day of the month.

Listeners and readers are invited to participate in the debate through discussion forums centered around
topics aired on Justice Talking programs. Each program features intelligent conversation with activists
and analysts, personal stories of those affected by the law, and lively debate of today‘s legal issues. A
project of the Annenberg Public Policy Center of the University of Pennsylvania, Justice Talking is
made possible with the support of the Annenberg Foundation. The program is hosted by veteran NPR
correspondent Margot Adler.

We invite you to visit the Talking Justice online blog and offer your feedback at
comments@justicetalking.org. You can stay up to date on what‘s happening on the show by signing up
for weekly podcasts or e-newsletter at www.justicetalking.org.


Are You Receiving JFA Email Alerts?
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message parts of the email.


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