OIF108 Winter04 3.7

Winter 2004
One in Five Americans has a disability
In this issue:
Headlines
Can Riverview Psychiatric
improve upon AMHI’s
legacy?
Page 8
John Callahan jostles
others’ reality with biting
humor.
Page 4
Business
Jo Waldron created a way
to hear telephone
conversations while at her
kitchen table.
See story — page 6
Independent
Living Profile
Steve Loignon is stepping
out to meet life head on.
See story — page 10
Technology
Select assistive technology
working from the bottom up.
See story — page 13
Travel
One traveler finds New
England’s accessibiity
inconsistent.
See story — page12
Volume 3 Issue 1
The three A’s of housing
A
ffordability, accessibility,
availability — this could be
the mantra for anyone in Maine
(or any state for that matter) with
a disability who wants to purchase or rent living space. All too
often, a living space meets two
but not three of these criteria.
The situation sounds dismal
but it’s better than even 10 years
ago, say housing advocates.
The Americans with Disabilities Act (ADA) essentially does
not apply to housing and the Fair
Housing Amendment, while
mandating significant resident
rights and architectural access,
excludes townhouses.
Need access to visit
Housing and Urban Development (HUD) funded buildings
must create a small percentage
of accessible units. However, recently, HUD began to explicitly
encourage visitability in these
buildings.
Eleanor Smith, founder of the
visitability movement and of
ConcreteChange in Atlanta,
writes that “the spirit of
visitability says it is not merely
unwise but outrageous that new
houses continue to be built with
basic barriers — outrageous,
given the ease of building basic
access into the great majority of
new homes and given the harsh
consequences lack of access inflicts on many peoples lives.”
Visitability means: one zerostep entrance, 32 inches of clear
passage space in all main floor
interior doors — including
bathrooms, and at least a half
bath on the main floor
In 1989, the Atlanta affiliate of
Habitat for Humanity, agreed to
start experimenting with building visitable homes. Today, there
are more than 300 such Habitat
homes there. (The Greater Port-
land and Hancock County,
Maine and the Southern New
Hampshire Habitat affiliates
construct with accessibility in
mind).
One of the world’s most significant housing accessibility laws
is the United Kingdom’s
visitability law passed in 1998. In
the U.S., Pima County, Ariz., Urbana, Ill., Austin, Tex., Iowa City,
Iowa, and the State of Georgia
have some sort of visitability law.
In addition, last June, U.S. Rep.
Janice Schakowsky (D-Ill.) intro-
See Housing — page 5
First Mainer receives Ticket to Work
Joined by Congressman Tom
SOUTH PORTLAND — Daniel
Halstead, a York resident and Allen and Social Security
student at the University of Administration’s Regional Commissioner
Maine
in
Manuel J. Vaz,
Machias, was
Halstead rethe first of
ceived
his
53,000 Mainticket at a
ers who will be
kick-off cerreceiving their
emony
on
Ticket to Work
Tuesday, Nov.
from the So25 at Alpha
cial Security
Daniel Halstead, with his
One in South
Adminitration
parents at left, received his
Portland.
during the
Ticket to Work from U.S. Rep.
The goal of
next
10
Tom Allen (D-Maine), right.
Ticket to Work
months.
is to increase choice in employ- Center, 888-208-8700; or visit
ment services, maintain the Social Security Administrawww.ssa.gov.
healthcare coverage, and in- tion Web site at www.ssa.gov
Information is also available at
crease self-sufficiency.
Tickets can be used to access the Web site www.yourticket
employment services offered by towork.com.
one of seven employment networks operating
Alpha One, 127 Main St • South Portland, ME 04106 Non-Profit Org.
in Maine.
US Postage
For informaPAID
Permit #7
tion contact a
Portland, ME
benefits specialist at Alpha One,
800-640-7200
(V/TTY) or at
Maine Medical
When you’re one of a kind,
you tend to stand out.
There’s no other organization
helping Maine people with
disabilities quite like Alpha One.
No other enterprise providing
the community with Alpha One’s
variety and depth of information,
services and products that create
opportunities for independent
living. That’s why all of us at
Systems Engineering are proud
to support — and applaud —
Alpha One’s continuing success.
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207-772-3199
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Network Security Audits • Web Application Development • ERP & CRM Solutions • Custom Software Development
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PAGE 3
Vantage Point
Winter 2004 | Volume 3, Issue 1
Informed choice key
S
everal months ago, Carl
Leinonen, executive directory of the Maine State Employees Association (MSEA), approached me about the role a
union could play in representing personal assistants (PAs) who
work for consumers in Maine’s
Consumer Directed Personal Assistance (CD-PAS) program. After a series of meetings involving MSEA, Alpha One, and the
Consumer Action Union, MSEA
expressed an interest in organizing Maine’s PAs.
Alpha One, and these programs in particular, have always
been grounded in the idea of
choice. Even though Alpha One
is neutral on the matter of
union representation, we felt it
was important that consumers
and their PAs be able to make
informed choices. For that reason, we scheduled 10 workshops throughout the state to
provide information and an opportunity for MSEA to speak
with consumers and PAs.
Since then, MSEA has contacted individual PAs seeking
authorization to represent them
in collective bargaining to improve wages and benefits.
To further this flow of information and to broaden the base
T
the CD-PAS program upon learning of the inadequate compensation received by PAs. We believe that all workers are entitled
to a livable wage, good benefits,
and respect for the work they do.
While working with PAs, consumers, and Alpha One, it became
clear that there is a high level of
mutual respect between consumers and PAs. The problem is
that inadequate funding and
state imposed program restrictions prevent PAs from receiving
the compensation that they and
consumers know they deserve.
The lack of health benefits in this
largely state-funded program is
unconscionable at a time when
the governor is promoting quality, affordable health care for all.
MSEA-SEIU, working with all
parties, can help correct these
inequities.
he Maine State Employees
Association SEIU is a membership driven organization
that represents over 10,000
Maine workers. We have over
sixty years of experience in advocating for effective public services and assuring that those
who deliver the services are
fairly compensated for their
work. Our members work in
hundreds of service occupations, including social services,
health professionals, administrators, public safety, road maintenance, and natural resource
management. Despite our diverse membership, we are
united by the common thread
of providing vital services to the
people of Maine.
Spread throughout Maine
Like consumers and PAs, we
are spread out across Maine,
with members residing in literally every municipality and
township in the state. We use
this geographic diversity to
build a legislative advocacy program that is second to none.
The combination of our size,
organization, and ability to
reach every elected official gives
us a unique advantage in influencing the policymakers at every level of state government.
Our affiliation with the Service
Employees International Union
(SEIU) — the largest union in
the U.S. — gives us the same advantages at the federal level.
This is important because the
pay, benefits, and jobs of all of
our members are dependent on
funding by the state and/or federal government.
We first became interested in
Unique nature
The unique nature of the CDPAS program creates an interdependent relationship between consumer and PA. The
program must provide for the
needs of both, if it is to be effective for either over the long
term. Consumers need reliable
PAs. Even the most dedicated
PAs must provide for their own
families. Low pay and lack of
benefits inevitably leads to rapid
turnover. High turnover significantly undermines consumers’
efforts to live independently.
For consumer direction to
reach its greatest potential, consumers must be able to offer PAs
not just a job but also a career.
This can be accomplished by
providing PAs the benefits that
should mark any good career
publisher
editor
contributing
writers
Photography
layout
Steven Tremblay
Publisher of One in Five
from which consumers and PAs
can make an informed choice,
I’ve asked Carl Leinonen to
write a guest editorial for One
in Five this month.
path, including retirement,
health insurance, paid holidays,
and a system that rewards years
of service. This will only happen
when state policymakers make
adequate resources available to
support the CD-PAS initiative.
Steven Tremblay
Karen Farber
John Dunleavy
Carl Leinon
Matt Peterson
Loraine Spenciner
Judith Ann Squier
John Nunan
Interface Media
Group
advertising
info@interfacenow.com
subscriptions
subscriptions@
alphaonenow.com
800-640-7200 (V)
866-906-5375 (TTY)
An Alpha One Publication
One in Five is published quarterly
by Alpha One Enterprises in
association with Interface Media
Group, Inc., Old Port Technology
Center, 164 Middle Street,
Portland, ME 04101.
Copyright ©2004 Alpha One
Enterprises. All rights reserved.
Reproduction of any part of One in
Five without the expressed permission of the publisher is prohibited.
Stronger together
Our union has a saying: stronger together . By working together and organizing through
MSEA-SEIU, we can form a
strong coalition of consumers
and PAs to address issues of mutual concern. Our relationship
will not involve any of the
adversarial qualities present in
some union settings. We will not
negotiate or interfere in the
working relationship between
consumers and their personal
assistants. MSEA-SEIU has
never had a strike and believes
strongly that consumer-directed
programs are an inappropriate
setting for one. We have made
this commitment in writing to
demonstrate our resolve to
never strike in this setting.
During the last several weeks,
MSEA-SEIU visited homes
across the state, discussing with
individual PAs how we can work
together to raise wages and provide health insurance through
CD-PAS. It was an excellent opportunity to learn firsthand
about the programs and meet
the individuals who make them
happen. This face-to-face contact is the best way for us to form
a strong relationship with both
consumers and PAs.
The response, by both the
consumers and PAs with whom
we have met, was overwhelmingly positive. Some were a little
Powering Independent Living
www.alphaonenow.com
surprised to find someone from
MSEA-SEIU at their door, but
once our objective was made
clear, PAs throughout the state
welcomed us.
Once a majority of PAs demonstrates its desire to form a
union through MSEA-SEIU by
signing membership cards, we
will submit these cards to a neutral third party for verification.
Then, a committee of PAs and
MSEA-SEIU staff will sit down
with consumers and Alpha One
to begin the process of negotiating a compensation agreement and developing a joint
strategy for funding it.
In the meantime, we are working with Alpha One and consumers to develop legislation to
open up CD-PAS to more
people. Our interaction with
consumers and PAs convinces us
of the need to move forward on
this important issue. Together,
we have a unique opportunity
to enhance service to consumers, recognize the value of PAs
and assure Maine people that
they are getting the highest
value possible for their tax dollars. — Carl Leinonen
PAGE 4
One in Five
www.alphaonenow.com
Feature
Jostling others’ reality systems
By Karen Farber
C
artoonist and author John
Callahan is anti politicalcorrectness. He has been called
a racist, a homophobe, an antifeminist, politically incorrectbrained, and more. He describes his audience as “a lot of
been a quadriplegic since his
early 20s), Callahan said, “It
makes me think about things
and letting go in life. I have a
different sense of life because
of disability — I have more appreciation for the passage of
Political correctness is a
synonym for no humor. It sticks
out like a sore thumb.
— John Callahan
misfits, free thinker types,
oddballs.” “People who’ve been
through things can take a jostling on their reality system,”
Callahan said.
Syndicated in approximately
50 publications, the creator of
the children’s cartoon series
Pelswick and the adult cartoon
series Quads , Callahan has
been creating cartoons since
his youth. He admits he never
really went through a struggling artist period. His cartoons were published in his college newspaper and early in his
career in Penthouse Magazine.
“I felt confident, felt funny. Although I wasn’t as (readily) accepted as I thought I would
(be),” he said.
Asked if his disability impacts
his cartooning (Callahan has
Callahan’s humor is not to everyone’s liking.
time, the shortness of life, the
value’s of the physical world.”
tribulations as an adolescent.
The boy, Pelswick, uses a wheelchair like Callahan.
No fan of television
Demystifying disability
Callahan likes to get out and
about in his Portland, Ore.
neighborhood. Though he’s
not much of a traveler, he enjoys, and finds entertaining, life
around him. “It’s sort of a (process of) osmosis in culture. I
don’t watch much T.V. It’s so offensive nowadays. It’s so brain
dead — the males portrayed
are so insipid,” he laments. Instead, he watches old movies
and reads the foreign press via
the Internet.
Disability is visually obvious
in Callahan’s two cartoon series. Pelswick, which no longer
airs in the U.S., is about a 13year old boy and his trials and
Beth Haller and Sue Ralph in
their study of Pelswick in Disability Studies Quarterly, Fall
2003, believe Callahan focuses
on society’s ableism. The show,
they write, “both normalizes and
demystifies the disability experience focusing on Pelswick’s
interactions with others and the
world around him, not his disability... Most of the characters
have no disability and much of
the laughter is directed at them.
When the humor focuses on his
disability, it is Pelswick poking
fun at himself.” The true innovation of Pelswick, the pair suggest, is that disability is just part
of the diverse humor panorama.
An example of Pelswick’s humor — he refers to his wheelchair as an SUV — a Spinal
Utility Vehicle. Regarding
handicapped
parking,
Pelswick ponders, “When you
think about having a special
place to park just because you
can’t walk, it’s pretty funny. After all, you don’t have people
with bad taste park closer to
the clothing store.”
If Pelswick is about adolescence, Quads is about and for
adults. Aired in Canada and
Australia, Callahan describes
the series as “outrageous, reckless, in your face.” The story —
Reilly O’Reilly becomes disabled
when he is run over by a car
driven by a very rich man. The
driver, overcome with guilt and
fear of a lawsuit, gives Reilly a
mansion in which to live.
Living at Maimed Manor
Reilly, who uses a wheelchair,
eventually occupies the mansion, known as Maimed Manor,
Continued on next page
Winter 2004
www.alphaonenow.com
PAGE 5
Disability humor has a history
Beth Haller and Sue Ralph (Disability Studies Quarterly,
Fall 2003) outline three phases of 20th century disability
humor preceding Pelswick.
Phase 1: “Freak” shows and the use of those with mental
disabilities as representing “fools” are characteristic.
Phase 2: Sick jokes, quadriplegic jokes and Helen Keller
jokes are created by people without disabilities.
Phase 3: People with disabilities take control of the humor message, poking fun at society’s barriers and their own
place in a world that has pitying or negative attitudes toward them.
Phase 4: The advent of Pelswick illustrates an integrated
approach rather than a disability focused approach. The
person with a disability is just another character in the
humor landscape.
along with his friends. Together,
they are known as the Magnificent Severed.
Callahan’s cartoons, published
in newspapers in the U.S. and
abroad as well as on postcards
and greeting cards, are not solely
focused on disability nor on ridiculing ableism. Rather, Callahan
pokes fun at and offends just
about everyone. “I choose everything but certain groups are
more touchy. There is a line in
the sand and I rely on my intuition to know where to stop (with
humor). Some people like it because they (the cartoons) do piss
people off. I don’t make bones
about laughing at people,” he
said. ■
News
Three A’s—
from page 1
duced the Home Design Act,
BH-2353.
Vermont passed a visitability
law governing the new construction of single and multifamily
dwellings in 2000. In addition
to wide door and hallways, the
law requires accessible environmental and utility controls and
outlets and requires that bathroom walls be reinforced for
grab bar attachment.
Maine’s accessible units
Housing built with public
funds must create a minimum
number of accessible or adaptable units.
Maine State Housing Authority (MSHA) estimates that of the
2,500 units it financed between
1997 and 2000, 10 percent or
250 are physically accessible.
There are roughly 320 accessible units in Maine found in
the federal Section 8 program
developments built before the
mid-1980s.
According to the USDA Rural
Development’s housing service
project director in Maine, Dale
Holmes, of the 8,000 units Rural Development has funded
statewide, about five percent, or
400, were constructed with accessibility in mind.
Unfortunately, accessible
housing in rural areas is often
underutilized due to lack of
proximate public transportaion
and services. Holmes explained
that if there is no renter with a
disability available, the unit will
be rented to someone without
a disability.
Even without financial incentives, some individual builders
and owners incorporate accessibility features. Unfortunately,
one home at a time is a slow
path to increasing accessible
housing numbers.
Housing and accessibility
funds
A number of Maine programs,
targeted to those with low incomes, are accessible to people
with disabilities. Rural Development helps finance single family dwelling purchases as well as
property improvements and repairs. “There’s money that goes
to repairs; and accommodations
are like repairs. As long as the
house meets our requirements,
if the buyer has a disability and
they need accommodations —
doors, ramps, appliances — we
work with them to get it done,”
Holmes said.
Coastal Enterprises Inc.’s
(CEI) Home Assistance Venture
II assists people with disabilities
with the down payment and
closing costs of home purchase.
Active from May 1997 through
January 2002, the fund is currently loaned out.
According to CEI’s Elaine
Sederlund, to date, 80 Maine
households received these CEI
loans ranging in amount from
$2,200 to $17,000. These loans
are “soft” second loans — no interest, no monthly payment —
used to fill the gap between
what one can borrow and the
purchase price, often covering
the closing costs or necessary
repairs, Sederlund explained.
Since the fund’s beginning,
three loans have been paid off
— typically when the house was
sold. In each case, the money
was loaned out again.
Sederlund said the waiting list
for the fund is more than 100
people long. “There is a huge
need,” she added, “we know the
need is greater than the funds
we have.”
However, Sederlund encourages interested individuals to
contact CEI. “It helps to indicate
need to us and we can often
make an appropriate referral,”
she said.
The City of Auburn’s housing
rehabilitation program has a
little known accessibility component. For homes in targeted
areas, there are 20-year $7,500
interest-free loans available to
owners to make both rental and
owner-occupied properties accessible. Outside of these areas,
there is a low-income requirement and the loan is deferred
until the property is sold.
“There are not a lot of referrals. I don’t think people think
of us,” Auburn’s community development administrator Reine
Mynahan said.
Through the state bond funded
program mPower, Maine residents
may borrow up to $100,000 for
home access features and modifications, stair lifts, and ramps.
Landlords may also be eligible for
low-interest loans.
For renters and owners, Independent Living Services grants
of up to $5,000 may be available for equipment used in the
home, such as ramps, roll-in
showers, and flashing alarms or
signals.
Availability
There is Web-based information about accessible housing
for rent and purchase in both
New Hampshire and Maine. Presented by Granite State Independent Living, the accessible
housing registry for New Hampshire
is
available
at
www.gsil.org/Housing/
Housing.htm
Housing.htm. Maine’s, operated by Alpha One, can be found
at www.adaptedhome.org/
www.adaptedhome.org/.
The nation’s aging population,
particularly the aging baby
boomers, may help increase the
amount of accessible housing.
The concept of ‘aging in place’
— growing older without having to move — is a cause championed by the AARP. “Older
people are living longer and
better — and they will live the
best and happiest possible lives
in housing that catches up with
them,” said William Novelli executive director and CEO of
AARP in a May 2002 speech.
Novelli argued that building
in components of accessibility
and visitability is good business
and good construction. ■
PAGE 6
One in Five
www.alphaonenow.com
Business
Breaking down the sound barrier
By Karen Farber
J
o Waldron lives in what might
be thought of as two worlds.
When using a telephone, she
participates in a world of
sounds. When she leaves the
telephone, she lives in a world
without them.
Waldron, the CEO of Fort
Collins, Colo.-based Able
Planet, who is also Deaf, is an
avid user of the company’s
microtechnology (m-tech),
which allows her to hear when
using telephones.
The m-tech is about the size
of a grain of rice and fits into
telephones and hands-free
headsets. The product’s original
goal was to make digital wireless
phones Hearing Aid Compatible (HAC) as required by the
FCC. (Wire phones must comply with the access requirements under the Telecommunications Act of 1996; see
sidebar.)
The Able Planet product is installed internally in the phone
or hands-free headset and creates a direct wireless link between the T-coil in a hearing aid
and the device in which it is installed. It differs from traditional
HAC technology in performance, size, and cost. Able
Planet reports that there was
almost a 30 percent difference
in average audio discrimination
scores between users of the two
technologies.
No hearing aid
To the company’s surprise, for
some individuals, including
Waldron, the m-tech also allows
hearing over a phone without
the use of a hearing aid.
Waldron explained that at the
urging of her patent attorney,
she reluctantly tried using her
cell phone (with the m-tech installed) without wearing a hearing aid. “At first, I didn’t hear
anything; then, there was some
sound; then, I understood what
was going on. We went back to
the testing group (who originally used hearing aids in the
T-coil position with the m-tech)
and they could all hear via these
phones without the use of the
hearing aids,” Waldron said. “Essentially, we’ve found a new delivery system.”
Waldron invented the new
technology at her kitchen table
with lots of technical guidance,
she said. Her impetus — she
wanted to hear the world.
“When I started down this path,
I was determined to find a way
to use the telephone,” she said.
Through the telephone she now
feels connected.
Counting phones
“The law says I should have
access to all of them (phones)
— I want to be able to go anywhere and use the phone at a
school or hospital. Count the
phones on the way to work
someday — all those offices, all
those payphones, all those
stores,” Waldron said.
“At first, before I started knowing what voices were, I thought
all men would sound one way
and all women another. Little
did I know that young boys
might sound like girls. I admit I
was a little overwhelmed,”
What would our nation do?
FORT COLLINS, Colo. — Rape drove Jo Waldron, CEO
of Able Planet, out of college. She describes it as the last
straw in a series of bad experiences.
Waldron recently went public with the story of her rape.
Why? To ask: “If 79 percent of American women experienced rape, what would our nation do?”
According to the National Center for Injury Prevention
and Control and the National Violence Against Women Prevention Research Center:
• Women with disabilities report rates of sexual violence
in the range of 51 to 79 percent.
• Adults with cognitive disabilities report a lifetime experience of sexual violence at a rate of between 25 and 67
percent.
• Adolescent boys with disabilities report rates of sexual
violence of four to six percent — adolescent girls at approximately 24 percent.
Hearing aid
compatability
Able Planet’s microtechnology
allows its CEO, Jo Waldron, to
hear telephone conversations.
Waldron said.
Life as an entrepreneur is not
always easy. “Entrepreneurship
is not for the faint hearted and
it’s a challenge with a disability,” Waldron said. “Attitude is
the first hurdle. Some assume
that one’s intelligence level
drops in proportion to the severity of disability.”
Even in the business world,
some assume she is just a figurehead for Able Planet.
“There’s a preconceived idea
(of) what a person with disabilities can and can’t do,” Waldron
said.
Waldron, however, even without a college degree has lots of
experience — 25-plus years at
the executive level in the manufacturing environment. She also
served on a Space Shuttle Design Team for AMI/NASA, received the President’s Trophy
from President Ronald Reagan,
and has worked with the FCC
developing hearing access standards for the telecommunications industry.
Being able to use a telephone
opens up all sorts of possibilities for people with hearing
loss, Waldron believes. Waldron
notes that during a recent hospital stay, if the hospital phones
had been equipped with Able
Planet’s m-tech, she could have
spoken with her family (cell
phone use is not permissible in
hospitals).
Hotel use
In June, Hyatt Hotel Corporation announced that it will
specify the inclusion of Able
Planet’s technology in all new
guestroom telephone sets purchased for Hyatt Hotels in the
United States, Canada, and the
WASHINGTON — In July
2003, the Federal Communications Commission
(FCC) modified the exemption for wireless phones under the Hearing Aid Compatibility Act of 1988 to require that wireless phone
manufacturers and wireless
phone service providers
make digital wireless phones
accessible to individuals
who use hearing aids.
For additional information
visit www.fcc.gov/cgb/dro or
call FCC’s Consumer Call Center at 888-CALL-FCC (888225-5322) voice or 888TELL-FCC (888-835-5322)
TTY.
Caribbean. At press time, Hyatt
had installed the technology in
almost three hundred telephones at their Colorado hotel
properties.
Waldron noted that the technology will also be included in
Hyatt’s business operations telephones.
Manchester, N.H.-based
HighSpeed Communications
Inc. and Mitel Networks, of Ottawa, Ontario, recently, implemented the latter’s phones using Able Planet’s m-tech at New
Hampshire-based Highlander
Inn. Highlander Inn wanted to
enhance its Mitel communications systems with hearing access technology for employees,
guests, and visitors with hearing
loss.
Waldron emphasized that Able
Planet is about more than products for those with hearing
losses. “Our mission is to create
multiple technologies for people
with different disabilities, giving
them greater access to everyday
living,” she said. She expects the
company to announce another
product in the next few months.
Able Planet’s m-tech is available to Original Equipment
Manufacturers (OEM) of
wireline (corded, cordless, and
pay phones), and consumer
electronics manufacturers of
hands-free earphone/microphone systems and full range
headsets including those with
microphones. ■
Winter 2004
www.alphaonenow.com
Poetry
PAGE 7
Invitation to our readers
Human Blizzard
By Sarah M. Menkin, Plymouth, Maine
Intricate patterning,
Delicate workmanship ...
Snowflakes like diamonds glintingly fall,
Forming a cascade of mingling beauty
Each one distinctive, yet similar all.
E
njoy expressing yourself in writing? One in Five invites readers
to submit poetry, fiction, personal essays, or cartoons to be
considered for publication in the Spring 2004 issue.
Submissions should be no more than 750 words in length and be
exclusive to One in Five.
Those pieces selected for publication will be edited for spelling,
punctuation, and grammar. One in Five also reserves the right to
edit for space considerations.
Email submissions to editor@alphaonenow.com or mail to One in Five
c/o Interface Media Group. P.O. Box 4615, Portland, ME 04112.
Hardcopy submissions will not be returned. Submissions must be received
no later than Monday, Feb. 16, 2004 in order to be considered.
Soft swirling, shimmering,
Light, whirling, falling
Forming in driftlets heavy and white,
Even in piles the snowflakes may glisten
Reflecting in cold the warm beauty of light.
Intricate patterning
Delicate workmanship ...
Women and men go forth every day,
Forming the crowds that mingle in business
A crowd, but each separate in some special way.
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PAGE 8
One in Five
www.alphaonenow.com
Will a new building solve old problems?
Receivership and consent decree cloud Riverview opening
By Karen Farber
A
s Marya Faust walks through the
state’s new, state-of-the-art mental
health hospital, she speaks of light
— both the physical and metaphorical
kinds. Faust, project manager of Riverview
Psychiatric Center for the Department of
Behavioral and Developmental Services,
points to the windows — tall ones that look
out onto newly landscaped courtyards.
The more elusive light is the hope that
Riverview will help heal wounds of the past
and signal a new era of mental health services in Maine.
While touring Riverview, a nearly completed $33 million facility, on a dreary day
in November, the effort being made to create an environment that is infinitely more
respectful and hopeful than the soon to be
closed Augusta Mental Health Institute
(AMHI) is palpable.
Input from staff and current and former
patients is evident from art selection to a
consumer-designed granite bench sitting in
a courtyard outside the patients’ greenhouse. “We wanted to make sure everyone’s
input was important,” Faust said.
Diverse services
What most lay people may be surprised
to learn is that Riverview (and AMHI in the
past) serves a variety of patients. Some
people may stay at Riverview for 24 hours,
others for 24 years or more. The facility
must accommodate both civil and forensic
patients in separate wings. It has a special
acute care unit and offers outpatient services.
Riverview’s 92-bed configuration (48 civil
beds and 44 forensic, compared to AMHI’s
76 and 27, respectively) is based on assumptions about the availability of communitybased services at both the local and regional
levels. There are roughly 172 civil psychiatric beds among Maine’s community hospitals. The goal of Maine’s mental health services system is that individuals be served in
the community whenever possible. The current AMHI and Riverview are places of last
resort for civil patients.
Riverview’s inpatient services are targeted
at individuals who: require involuntary hospitalization; require acute, specialized and/
or extended treatment; require a secure setting in which to receive treatment; or are
The single entrance at Augusta Mental Health Institute (AMHI), left, constrasts sharply with
the staff entrance at Riverview Psychiatric Center. In addition to the staff entrance, there is a
visitor/outpatient entrance as well as two private admissions entrances at the rear of the
building.
committed under the criminal statutes for
observation, care and treatment. Outpatient
services are primarily for individuals who
are unable to readily access community services.
At AMHI, just about everyone enters the
building through an overwhelming granite
portico (see photo above). Riverview has
two, rear, patient admissions entrances, a
separate staff entrance with its own parking area, and a visitor entrance for visitors
and outpatients.
Balancing Act
The facility is truly the result of a grand
balancing act and not just between budget
and needs and desires. “It is a balance of
what risks to take in style versus safety,” said
Faust. Indeed, sometimes safety and accessibility needs are at odds, “There’s no kit
for that,” she added. “There were compromises all along the way but nothing that
affected patient areas and programs,” she
said.
Riverview’s courtyards, designed for comfort and pleasure, cannot contain any poisonous plants or furnishings or plants that
can be used as weapons.
Accessibility features such as grab bars in
bathrooms must be modified so no ropes or
belts can be looped through to create a
noose. Window blinds are contained between
two panes of glass and have a specially designed control mechanism allowing patients
to open and close exterior bedroom blinds
at will without having to touch the blinds
and without requiring staff assistance.
Continued on next page
What is the AMHI
Consent Decree?
In 1989, a class action suit was filed
on behalf of all patients at AMHI on
or after Jan. 1, 1988. The fifteen
count complaint alleges that the
plaintiffs’ rights — to a reasonable
opportunity for physical exercise and
recreational activities; adequate sanitation, ventilation and light; protection against physical and psychological abuse; adequate professional
medical care and treatment; individualized treatment and service
plans; freedom from unnecessary seclusion and restraint; appropriate
privacy, humane care and treatment
and a humane treatment environment; provision of treatment and related services in the least restrictive
appropriate setting; and more — had
been violated.
A settlement agreement (known as
the Consent Decree) was ratified in
1990 requiring that Maine be in substantial compliance with 200 provisions by September 1995.
Since then, the courts have found
Maine to be in contempt three times.
The last time was in September 2003.
At that time, the court ordered that
AMHI be put into receivership. In October, the state filed an appeal
against receivership; shortly thereafter, the court master appointed a receiver, Elizabeth Jones, to take over
AMHI’s management.
Winter 2004
“We didn’t want it to have the look of a
security facility but we needed the security. We wanted open space not a pen. We
had lots of group meetings with consumers both in and outside of AMHI,” Faust
said.
Fresh air spaces
For example, there are three courtyards.
One, for both forensic and civil patients, is
internal to Riverview and surrounded completely by buildings. The other two (one for
civil and one for forensic) have exterior
sides and therefore must have security
fences. The answer was to have the fences
built at a level below the courtyard thereby
creating the feeling of a lower fence without losing the security of a higher fence.
Environmental conditions, once a serious
health problem at AMHI, are crucial here.
Patient rooms are humidified and have
modern heat and cooling systems. According to Faust, the air exchange with the outside is higher than necessary standards.
There are also numerous thermostats allowing for more individualized environmental
controls.
The typical patient room is at least 100
square feet, Faust explained, with a bed,
nightstand, window bench with storage, ,
desk, shelf, storage unit, and a Velcro bulletin board. Room doors have push and pull
handles for both accessibility and safety.
A big change from AMHI is the recreational and leisure time opportunities available. A gym with a fitness center is located
adjacent to the forensic wing; there are
numerous sitting and reading areas for both
staff and patients; and, there is a separate,
non-denominational chapel. The treatment
mall for patients includes computer rooms,
small group therapy rooms, teaching kitchens, and lounges. ■
www.alphaonenow.com
PAGE 9
Keeping the faith in oneself and the courts
One in Five recently spoke with Karen
Evans, a former patient at AMHI and a
current member of the AMHI Quality
Improvement Council, about her hopes
for Riverview Psychiatric.
Evans is a respected advocate for
those with mental health issues and
those who are poor and homeless. She
continues to receive services and support for her own illness and has gone
from being a client to a Peer Specialist
for Catholic Charities Maine Support
and Recovery Services. Her work involves speaking in the community, developing services, and working with
mental health service consumers to assist in their full integration into the
community.
OIF: What do you hope Riverview can
offer that AMHI could not or did not?
sunlight. Now all (patients) will have private baths, bedrooms, and showers.
At AMHI, there was nothing to do except watch TV and play cards — nothing productive. At Riverview, there will
be a treatment mall of activities. There’s
a gym, new custom-made maple furniture, and the consent decree requires
improved environmental controls.
There are also three large courtyards
— I would never have dreamed of it.
I’m particularly excited about Maine
Art Commission’s use of consumers’ and
others’ art to decorate the facility.
There will be no more seclusion or restraints. (Previously,) patients had no
bathroom privacy — they were not
treated with dignity and respect.
I know we’ll be working with some new
staff and with different training; but, if it’s
The consent decree is the only
thing to hold onto that admits
what was done is wrong.
— Karen Evans
Evans: I’d much prefer the use of hospitals in the community ratherthan
support a psychiatric hospital. We
(people with mental illnesses) are a part
of the community but the culture of the
legislature will not approve that. Also,
my druthers would be to never have consumers in a mixed-use (forensic and
civil) hospital. However, I accept that a
forensic unit will be there but separate.
AMHI had 30-bed units with the beds
organized headboard to headboard. I remember AMHI as dark and dingy with large
wards and chairs chained to walls. This is
a new environment and will have lots of
Top photos: a granite bench in Riverview’s interior common courtyard displays a patient’s
artwork. The AMHI courtyard (center) resembles a prison with its curved fencing. Bottom
left: picnic tables appoint Riverview’s civil courtyard. Bottom right: the security fence appear less intrusive because landscaping places the fence below the forensic courtyard level.
the old mindset and treatments then the
beautiful building will not mean anything.
OIF: How do you think Maine and consumers can best close the door on AMHI
and move forward?
Evans: Honor the consent decree, first
and foremost. The consent decree talks
about rights and quality treatment. If we
do that then we’ll have come a long ways.
The other is the cemetery project. I experienced a friend’s death at AMHI. She
died by hanging herself on the jagged
glass of a broken window. I never learned
whether she actually lived or died. We
were never allowed to discuss or honor
the deaths.
There were probably 10,000 deaths at
AMHI since 1840. When we memorialize
these — some were tragic, some no one
acknowledged — that would create a
healing for me.
OIF: Is there anything out of your past
AMHI experiences that you hope others
can learn from ?
Evans: My experience was horrible; although, in the oral history project, you
can hear of good care. I was only 17
(upon arriving at AMHI) and slept next
to a woman who killed five kids. I (intentionally) got in trouble a lot so I’d
be put into seclusion — I feared the
woman. Also, staff molested me.
I could choose to live in those memories but bitterness hurts you. My healing power is to forgive. Until I was willing to let go (of these experiences), I
couldn’t go forward.
OIF: How would you assess the state’s
efforts regarding mental health services?
Evans: They’re not doing enough. They
are trying but it’s not happening fast
enough. There’s been plenty of time. It’s
not about working with evil people. The
judge said it’s poor management. I’m
hopeful we will see things move forward
on the consent decree. That’s what I
hope for.
PAGE 10
One in Five
www.alphaonenow.com
Independent Living Profile
Stepping out to meet
life head on
By Matt Peterson
M
isfortune affects people in different ways. At the onslaught
of what initially seems like disaster, some fold under the load
of stress while others stand up to the face of adversity. Proof positive of the fact, that tragedy is only tragedy if you do nothing with
it, is Steve Loignon, president and founder of Stepping Back Into
Life, Inc., whose Web site is dedicated to supporting people with
physical disabilities.
Seeing the bright side
Following a June 2001 car accident, Loignon spent five weeks in
a coma as doctors fought to keep him alive. Upon waking, Loignon
learned that both of his legs had been amputated. His first reaction to hearing this heartbreaking news? He extended a weak and
unsteady atrophy-crunched fist as he went to grasp the doctors’
hands in a sign of “thanks” for saving his life.
“I discovered at a young age how great it was to live and love life,”
Loignon said. “My parents died when I was young and I’ve grieved
with my wife Peggy when her grandmother and mother passed away
six months apart — this has all really taught me that life is good.”
Loignon’s Web site, www.loignon.org
www.loignon.org, originally began as a
means of communicating news about Loignon’s health and progress
during his hospital and rehabilitation stays. While in rehab,
Loignon made the commitment to take the Web site to the next
level. “There wasn’t a support unit out there to tell the success
stories about people with disabilities,” he said, “So I thought, what
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Steve Loignon, seen graduating last year from Daniel Webster College in Nashua, N.H., hopes his enthusiasm for life is contagious.
can I do to make a difference? What can I do to help someone who
is going through what I went through — what can I do to help
them get through it a little bit easier? That’s what “Stepping Back
Into Life” grew out of.”
Success Stories
Focusing on the theme of the individual who has persevered despite his or her disability, the Web site is a veritable cornucopia of
‘success-despite’ stories emphasizing Loignon’s idea that, “The
people that come out of a disability with a good attitude are the
people that had a good attitude before their disability.”
“Keeping a positive attitude and focusing on goals has helped
me to get where I’m at today,” Loignon said. “I had these qualities
before my accident and I have them with me today.”
Loignon reported over14,000 visits to his Web site during its first
year — it may be one of the fastest growing Web resources for
people with disabilities.
The site also offers a scholarship for educational programs and
activities. Loignon predicted that next year two $500 scholarships
will be awarded.
In addition to maintaining Stepping Back Into Life, Loignon divides his time among work as a senior engineering assistant at Pratt
& Whitney in North Berwick, running Shapleigh Hops Craft Brewing (his brewing specialty supply shop), working out, and spending time with family and friends.
“Once I learned of the accident and that my legs were gone, it
was clear to me that I was very lucky to be alive... During my four
months in rehab regaining my strength and fighting off a staff infection that kept me from eating, I did go through moments of
despair. However, it was important to me to get back to my life and
the way I left it,” Loignon said.
“It’s all cliché, but all very true — ’Life is great and it is what you
make of it,’” he concluded. ■
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www.alphaonenow.com
PAGE 11
Opinion
Family dysfunction overshadows discussion of implants
By John Dunleavy
who by the end of the film will
receive a cochlear implant.
T
he 2000 film, Sound and
Fury, does not live up to its
billing as an exploration of “a
world without sound and one
controversial option for breaking
the silence, the cochlear implant.” The setting of the fight is
a family of both deaf and hearing
people; the excuse for the fight is
whether five-year old Heather
should get a cochlear implant.
This is not a film about cochlear implants. It is a vivid portrayal of a dysfunctional family,
with deafness and surgical procedures thrown in.
The opening scene sets the
stage as Marianne, Heather’s
paternal grandmother who is
hearing, tells Heather about all
the sounds the latter is missing.
Heather is the child of two
deaf parents, Peter and Nita.
Peter’s parents are hearing, as is
his brother, Chris, who is married to Mari, a child of deaf
adults (CODA). Chris and Mari
have a baby boy who is deaf and
Superficial treatment
The film presents cochlear
implants with breathtaking superficiality. The serious issues
are trivialized or ignored. Virtually no hard information about
the potential for hearing with
cochlear implants is presented.
Nor is there mention of risks
associated with this neurosurgical procedure until late in the
film, when a surgeon tells Chris
and Mari that their son’s “face
moves” following surgery. This is
the sole acknowledgement that
there is a possible negative outcome.
The film glosses over the fact
that implanted children still
need special equipment to function in a school environment
and that extensive speech and
hearing training are required in
order to use the implants effectively.
The viewer catches glimpses of
this equipment during schol
scenes which bear a striking resemblance to the oral education
classrooms of the 1950s and
1960s. The mannerisms, the behavior patterns, and the careful,
consciously formed speech are
virtually identical. Even the ban
on sign language — lest the
children “use sign language as
a crutch” — has a familiar ring.
In 1956, my own family received
the same warning about me.
Peter and Nita make what
seems a genuine effort to determine what is best for Heather.
They visit this school and a New
Jersey family whose daughter
recently received an implant.
With no way to assess the New
Jersey girl’s speech quality, Peter asks the interpreter for her
opinion.
Separation from family
For a hearing family, the birth
of a deaf child can be a calamitous event. The child’s deafness
is likely to cause separation from
the family. The appeal of the cochlear implant, particularly
when it is billed as a “cure,” is
obvious.
For deaf parents, however, implantation of a cochlear device
in their deaf child is likely to
create separation — something
both Peter and Nita fear.
When they decide to postpone
the implantation decision until
Heather is old enough to participate, Peter’s family verbally
attacks them — even accusing
them of child abuse.
I honestly do not know
whether Healther should have
received an implant — the decision belonged to her parents.
Sound and Fury erroneously
presents the Deaf and Hearing
worlds as different as black and
white. “Deaf identity” is both
simpler and more complex than
portrayed here: it is formed of
an awareness of shared experiences and a common language
— a language, in this case,
finely evolved to suit its environment. This makes it an acquired
identity, not something innate
or given from birth. ■
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PAGE 12
One in Five
www.alphaonenow.com
Travel
Doing wheelies across New England
By Judith Ann Squier
P
lanning a trip to the East
Coast, for me, a northern
Californian creates an excitement equal to a Mainer crossing the country for a San Francisco holiday. As eagerly as a kid
in a Vermont chocolate shop, I
savor the travel books and surf
the Web. My choices must
match my personal needs as a
bilateral above-the-knee ampu-
whose illustrations donned the
cover of the Saturday Evening
Post when I was a kid. The inn
is welcoming with a recently
constructed exterior ramp and
a spacious, fully accessible bedroom and bathroom inside.
History over access
I wish I could say accessibility
is that good for the entire trip.
I ask my husband: “Are we in
colonial times?”
tee who walks minimally with
artificial limbs and a cane. After much deliberation, my husband and I choose five days in
Vermont’s Green Mountain and
New Hampshire’s White Mountain regions.
Booking our flight, I specify
that I am a semi-ambulatory
More than once, I ask my husband: “Are we in colonial times?”
Often, we encounter steps and
narrow doorways in buildings
erected before the 1990 Americans with Disabilities Act. We see
first hand how the preservation
of historical authenticity perpetuates architectural barriers.
Judy Squier felt welcome in many New England locations.
wheelchair user who is able to
walk but who needs an aisle seat
as close to the front as possible.
At the airport terminal, I request
a gate-check tag for my wheelchair, allowing me full use of my
own chair to enter and exit the
plane.
Aboard the plane I review our
New England itinerary and
lodging reservations. The Inn on
Covered Bridge Green in Arlington, Vt. is the place I can’t wait
to see. Hours later, we drive
through a red covered bridge
past a white church to the
former home of America’s beloved artist Norman Rockwell,
Pockets of inaccessibility
We find pockets of inaccessibility throughout our travels.
Bennington, Vt.’s Subway deli
lacks handicapped parking, has
steep steps at the entry and a
broom closet-size bathroom. The
neighboring One Hour Photo offers no wheelchair access yet on
the same block is a 24-hour
Dunkin’ Donuts with a drivethrough, disabled parking spots,
and no steps. Also, the
Bennington Museum, with the
largest collection of folk artist
Grandma Moses’ paintings, is
fully accessible.
Montpelier, the state capital,
has ample curb cuts, with the
majority of shops level with the
sidewalks. We enjoy a tasty, artistically presented dinner at
the Chef’s Table on Main Street,
a restaurant operated by the
students of the New England
Culinary Institute and we appreciate the exterior ramp and
spacious interior.
I am thankful for the handcontrols on our Avis rent-a-car
that we special-ordered in advance. I drive; my husband navigates as we travel west of Montpelier. Using exit 10 off Highway 89, we enter the town of
Waterbury which offers a ‘must
do’ fully accessible ‘munching
tour.’ Enjoy a 30-minute guided
tour of the Ben & Jerry’s Ice
Cream Plant, then sample Cabot
Cheese and Lake Champlain
Chocolate down the road at A
Special Place. If you still have
room, sample ciders at the Cold
Hollow Cider Mill across the
highway.
Traveling east, we go out of our
way to use the interstate Cornish-Windsor covered bridge.
We enter the bridge in the state
of Vermont and exit in New
Hampshire. We spend hours
each day locating covered
bridges, barns, and church
steeples — the scenes that New
England is famous for. Landscape photography from the car
offers me a barrier-free pastime
as well as providing material for
my barrier-free hobby of
scrapbooking.
New Hampshire’s Visitors
Guide contain a page entitled
Accessible New Hampshire, listing accessibility in state parks
and forests for camping, fishing,
skiing and outdoor exploration.
For specific information visit
www.visitnh.gov or call 800852-3405.
Judy Squier enjoys a fully accessible ‘munching tour’ that begins
at Ben & Jerry’s Ice Cream Plant
in Vermont.
White Mountains by rail
North Conway, N.H. attracts us
for Route 112’s scenic 34-mile
stretch from Conway to Lincoln
along the Kancamagus Highway.
Enjoy the White Mountain region with a train trip on the
Conway Scenic Railroad (800232-5251). Or, take an unforgettable journey to the highest peak
in the northeast on the Mount
Washington COG Railway (800922-8825). We learn that accessibility varies with the different
trains, so phone ahead to discuss
specific needs.
Travel with a disability
stretches one’s ingenuity, but
the pluses cancel any minuses.
In fact, en route to the airport
for our return trip home, a quick
stop at a McDonald’s provides
an uplifting final note for our
New England holiday. A sign on
the door reads: “Braille and pictorial menus available upon request.” I eagerly thank the establishment for their desire to
provide equal access to all. ■
Buffalo sled hockey team
trounces competitors
FALMOUTH — The Buffalo Freeze captured the championship in the first annual Alpha One Lobster Pot Sled Hockey
Tournament at the Family Ice Center on Dec. 15, 2003.
For the final game, captains waived the ‘one Paralympian
per active shift rule’ and the Boston team augmented its squad
with Paralympians and U.S. national team members from the
Eastern Paralyzed Veterans Association Islanders and the
Northeast Passage Crushers to create a virtual all-star team.
However, the Freeze still won on a hat trick by Chris Manns.
Winter 2004
www.alphaonenow.com
PAGE 13
Technology
Select assistive technology working from the bottom up
By Loraine J. Spenciner
C
omputers with assistive
technology help break
down barriers that prevent individuals with developmental
disabilities from participating
in many activities that others
take for granted.
For students with developmental disabilities, the choices
frequently begin with the
computer’s “footprint”. If an individual needs a structured setting, a desktop computer provides this advantage while
laptops provide portability and
flexibility.
The next consideration is the
cursor that indicates a point on
the screen. Since some cursors
are difficult to find and follow,
specialized software may simplify this with choices about the
cursor shape and size. One such
program, Biggy, can be downloaded for a 14-day trial from
R.J.
Cooper
at
www.rjcooper.com/biggy/
index.html.
Students with small functional reading vocabularies can
work more independently using
specialized email software. Customized to the individual, both
program names and files can be
displayed as graphics or photos.
Incredimail allows the user to
write by selecting graphics and
using a voice message recorder
rather than written text. It also
allows the user to listen to the
message before sending it. To
download a free copy, visit
www.incredimail.com/
english/splash.html
english/splash.html.
Another email program designed for non-readers is
IcanEmail, which comes with
large print and graphics. When
the user makes a selection, the
program reads all text on the
screen. A free 14-day trial copy
is
available
at
www.rjcooper.com/
icanemail/index.html
icanemail/index.html.
Students with poor fine motor control often find enlarged
keyboards easier to use. A number of companies distribute
Organizations in this Issue
Able Planet
ableplanet.com
AMHI/Riverview
www.state.me.us/bds/amh/
index.html
207-287-7200 (V)
207-287-7219 (TTY)
Coastal Enterprises, Inc.
www.ceimaine.org
207-882-7552
Concrete Change
www.concreatechange.org
The Inn on Covered Bridge Green
800-726-9480
Assistive Technology Resource
Center, UMaine Farmington
departments.umf.maine.edu/~sped/
at.htm
Maine Parent Federation
www.mpf.org
800-870-7746
Ben & Jerry’s Factory Tour
www.benjerry.com/our_company/
about_us/tours
Maine State Employees
Association
www.mseaseiu.org
Bennington Museum
www.benningtonmuseum.com
802-447-1571
Maine State Housing Authority
www.mainehousing.org
800-452-4668 (V)
800-452-4603 (TTY)
Chef’s Table
www.necidiningg.com/
chefMaine.htm
802-229-9202
City of Auburn
Housing Rehab program
www.auburnmaine.org/cdbg/
housing_rehabilitation_loan.htm
mPower/FAME
www.mpowerloans.com
Consumer 800-640-7200 (V/TTY)
Business 800-228-3734 (V/TTY)
Spindleworks
207-725-8820
USDA Rural Develoment
www.rurdev.usda.gov/me/
these. Check out Eagle.com, at
www.eaglecom.bc.ca/
input.html and IntelliKeys at
www.intellitools.com/
products/IntelliKeys/
home.htm
home.htm.
A mouse or other pointing
device can eliminate keystrokes
altogether. However, using a
mouse is an abstract operation
and some students may need a
more concrete and natural interface. A touch screen permits
selection by directly touching
the picture, symbol, or word on
the screen. Two of the most
popular are Magic Touch and
Touch Window. (Go to
w w w . m a g i c t o u c h . c o m and
www.riverdeep.net/products/special_needs/
touch_window.jhtml respectively).
Voice recognition software is
another keyboard alternative.
Scansoft is a leading maker of
this
type
of
software
www.scansoft.com
(www.scansoft.com
www.scansoft.com). As long
as an individual can use a consistent sound to indicate a word,
voice recognition software will
identify the utterance and
translates it into text on the
screen.
Speech-to-text software can
change how students receive
information. When text is displayed on the screen, this software translates the text to
speech — email, short stories or
entire books, and Web pages.
Free text-to-speech programs
include Natural Voice Reader at
www.naturalreaders.com/
Standard_version.htm and
ReadPlease
found
at
www.readplease.com
www.readplease.com.
Plan a trip to the Assistive
Technology Resource Center at
the University of Maine at
Farmington. The center is the
only free resource in the state
where students with disabilities,
their families, teachers, and
other professionals can view
and borrow assistive technology.
Loraine J. Spenciner is a professor of special education at the University of Maine in Farmington.
PAGE 14
One in Five
www.alphaonenow.com
News
Mainers dominate U.S.
wheelchair curling team
BELFAST — Wheelchair curling teams from Belfast and
Utica N.Y. competed, in a November national competition,
to determine who will represent
Mainers make up the bulk of
the U.S. wheelchair curling
team scheduled to compete in
Sursee, Switzerland this month.
the U.S. at the 2004 World
Wheelchair Curling Championships in Switzerland this month.
The competition between the
teams was quite intense and after a series of tiebreakers, it
came down to a Belfast win in
the last of eight matches. The
U.S. team was then selected by
the U.S. Curling Association,
keeping to the requirements of
world competition of sending
forward three of the original
four players who competed and
won at the nationals, plus the
addition of two other players.
The five who will be representing the U.S. in January are, from
Maine, Wes Smith of Glenburn,
Sam Woodward of Surry, Loren
Kinnwey of Hallowell, and
Danell Libby of Gray, and from
N.Y., Mark Taylor of Utica.
The top eight teams, of 13
countries entered in the world
competition in January and in
the world competition the next
year in Scotland, will be invited
to the Paralympic Winter games
in Torono, Italy during 2006.
Talking Checkbook
released
JOLIET, Ill. — The Talking
Checkbook, from Premier
Assistive Technology, Inc., is
designed to make account management and check writing accessible for individuals who find
it difficult to see small print,
write in small areas, or find
simple math difficult. For these
individuals, the Talking Checkbook may be easier than manu-
ally writing checks. It handles
entries for virtually all types of
everyday banking transactions.
The checkbook product simplifies traditional banking tasks
for its users. With the Talking
Checkbook, users can maintain
or regain their independence
by reducing and/or eliminating
their reliance on others to help
them with their banking activities, the company said.
The Talking Checkbook manages an unlimited number of
accounts, reads transactions,
uses common everyday terms
rather than acounting ones,
prints checks, and is compatible with major screen readers
such as JAWS and Window Eyes.
It also has a search capability
and check signing template. Reports can be saved to MS Word
documents or exported to Ex-
cel or Lotus. The product also
offers a built-in talking calculator and accessible calendar.
For more information visit
www.readingmadeeasy.com
www.readingmadeeasy.com.
Spindleworks hits 25
PORTLAND — Spindleworks
of Brunswick celebrated its 25th
anniversary with an art exhibition at the gallery Space in Portland through late December.
Spindleworks is a nonprofit
art cooperative for those with
developmental disabilities.
Opened in the late 1970s, it was
founded to help people with disabilities following a court-ordered closing of a state home for
those with mental disabilties.
The artists receive 75 percent
of the proceeds when their art
sells; the rest is channeled back
into the program.
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Winter 2004
www.alphaonenow.com
PAGE 15
News
Viewing AMHI through
a telescope of personal
experience
AUGUSTA — Anticipating the
closure of AMHI, the Maine Department of Behavioral and Developmental Services (BDS)
hired Diana Scully to, among
other things, collect and publish the human account of the
institution’s history.
Beginning this past summer,
Scully and others spoke with 30
people, about two-thirds of
them former patients. After the
interviews are transcribed,
Scully hopes to “line them up
and see what themes flow
through.” “We’re looking for the
personal view of being at AMHI,
the good, the bad, and the ugly,”
she said.
The value of this document is
to “speak and share, so perhaps
people will learn and do better
in the future. Patients at AMHI
are kind of a forgotten people
and shouldn’t be. It’s important
to take stock of the past and not
lose it so the future can be better,” Scully said.
Former patients have conducted most of the interviews.
Scully said, “It’s been an honor
to hear [people’s stories]. I’ve
been deeply touched — the resilience and strength I’ve seen
has blown me away.”
Interviews with former staff,
from the 1940s through the
1960s, offer perspectives on
changing treatment. Not all of
the staff, said Scully, were comfortable with past methods.
Maine’s Historic Preservation
Commission is documenting
the history of the physical plant.
The Maine State Library has all
of the annual superintendents’
reports up to the 1970s, as well
as some of the photos that have
been stored at AMHI. The question, said Scully, is where all the
papers currently stored at AMHI
will end up.
Art is another venue through
which the AMHI experience is
being told. In addition to what
is known as the “Duct Art” (see
www.state.me.us/bds/amh/
D u c t A r t / I n d e x . h t m ll) ,
Natasha Myers, an artist who
has worked at AMHI in the past,
is gathering slides of various art
efforts of patients. Some, said
Scully, are incredible pieces that
capture aspects of mental illness
and of living at AMHI.
Scully hopes the oral histories
will be presented at AMHI’s formal closure currently expected
in the January to February
timeframe.
For more information about the
oral history project contact Marya
Faust at 207-287-7239 or via
email at Marya.Faust@maine.gov.
M a r c h 3 1 , 6 - 8 : 3 0 p . m ..,
‘Why can’t Johnny B. Goode?’
Challenging behaviors and
positive supports; and
April 7, 6-8:30 p.m.
p.m., ‘Can
you hear me now?’ Advocacy
and communication skills.
To register, contact G.E.A.R. at
839-6915 or 800-264-9224.
Learning educational
advocacy skills
AUGUSTA — The Maine Parent Federation and the G.E.A.R.
Parent Network will present a
five-week course in the spring
of 2004 designed for parents to
acquire advocacy skills in the
special education process.
All classes will be held on
Wednesday nights at Central
Maine Medical Center in
Lewiston.
The class schedule is as follows:
March 17, 6-9 p.m.
p.m., Disabilities overview and resources, special education qualifiers and
disability awareness;
M a r c h 2 4 , 6 - 8 : 3 0 p . m ..,
PETs and IEPs: Tips, tools and
techniques;
Send
your
disability-related
news to:
editor@alphaonenow.com
or
Editor, One in Five
Interface Media Group
P.O. Box 4615
Portland, ME 04112
The Road to Empowerment
Begins with Knowledge.
Congratulations to Alpha One and One in Five for paving the way.
Thomas C. Newman, Esq., and Murray Plumb & Murray applaud
Alpha One’s efforts to open the doors of opportunity for all people with disabilities.
We are proud to serve as Alpha One’s legal counsel since 1980.
75 Pearl Street
Portland, Maine 04104-5085
www.mpmlaw.com
(207) 773-5651
tnewman@mpmlaw.com
civil rights and disability law • business and employment law •
commercial and personal injury litigation • intellectual property
PAGE 16
One in Five
www.alphaonenow.com
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