E6 EZ EE THE WASHINGTON POST.TUESDAY, AUGUST 6 , 2019
Mindy Scheier, on the other
hand, was a career fashion de-
signer facing an urgent plea for
jeans from her son Oliver, then 8,
whose muscular dystrophy re-
quired leg braces. Only sweat-
pants would fit over the hard-
ware and still enable him to use
the bathroom by himself.
“I was horrified by what I saw
out there,” said Scheier, a mother
of three in Livingston, N.J. “There
was nothing fashionable, current
or trendy for kids. Everything
was for an aging population.”
So she sliced up boys’ denims
from Target and sewed Velcro
strips from the hem to just below
the knee to accommodate his
braces, and replaced the zipper
with easier fasteners. Those des-
peration jeans marked the first
time Oliver could put on pants
that had a zipper or buttons and
use the restroom on his own.
That was in 2013. Today, a
growing number of clothing and
footwear companies offer style,
dignity, independence, even joy
to younger, hipper consumers
with disabilities, whether they
dress themselves or get help from
others.
“Adaptive design” it’s called,
regular clothing and shoes re-en-
gineered for children and adults
with physical, cognitive or senso-
ry issues, both chronic and short-
term.
Elastic, snaps, magnets, large
buttons, zippers, drawstrings,
and Velcro fasten everything
from dress shirts and raincoats
to swim trunks and pajamas.
Spine-length back zippers on
jumpsuits deter stripping by peo-
ple with dementia or autism is-
sues. Onesies have concealed
openings for abdominal access.
Dresses, shirts and hoodies have
two angled front zippers for ac-
cess to chest ports, catheters or
PICC lines used for medicine
infusions. Cozy fabrics, flat
seams, tag-free labels and the
lack of back pockets prevent sen-
sory distress and skin injuries.
Sneakers with zippers and fas-
tener closings make shoes more
manageable.
Adaptive design began some
40 years ago, mainly for seniors
in long-term care facilities, not
for young adults and children.
Those early clothes and shoes,
while hardly fashion forward,
ADAPTIVE FROM E1 were a godsend for caregivers
and their charges, many of whom
had struggled with — or been
embarrassed by — conventional
apparel, especially last-resort
sweatsuits.
Much of today’s adaptive
clothes and shoes skew younger
than what was offered then, us-
ing fabrics and designs adapted
from trendy conventional attire.
Longtime Canadian designer
Izzy Camilleri — known for high-
end, high-style furs, gowns and
costumes worn by actors and
rockers — made her first adap-
tive piece 15 years ago: a custom
coat for Toronto Star journalist
and disability activist Barbara
Turnbull, who was paralyzed
from the neck down at 18 during
a shooting at a store. (She died at
50 in 2015).
“I’d never worked with some-
one in a wheelchair, with a dis-
ability. It was quite eye-opening
and humbling,” Camilleri said by
phone from her Toronto show-
room. Turnbull’s capelike coat
“needed to be shorter in the back,
with pockets on the inside to
keep her hands warm, and a long
zipper pull in front that her serv-
ice dog could operate. I just be-
came much more compassion-
ate, knowing what it takes [for
people with disabilities] to get
through their day.”
Her IZ Adaptive collection of-
fers wardrobe basics mostly in
black, white, gray and khaki for
women and men. Camilleri, like
other adaptive designers, often
creates two collections: one for
people able to stand, which is
how conventional apparel pat-
terns are configured, and the
other for people who sit, most
often in wheelchairs, which
means clothes must fit a body
folded at angles at the hips and
knees. “Seated” clothes are cut
wider across the lap and thighs,
with a modified waist that avoids
pressure on the abdomen while
providing coverage and comfortin the rear. Coats and blazers are
cut shorter in the back to avoid
bunched fabric that can irritate
skin and internal organs.
Camilleri’s clothes range in
price from $29 tank tops to $259
coats and $425 for a man’s suit
with elastic in the back trouser
waistbands “for a cleaner line in
front. The seated jacket is cut to
remain buttoned to maintain a
polished look without pulling,”
Camilleri said.
“The general reaction when
people hear about adaptive de-
sign is, ‘Holy cow! How has this
not happened before?’ ” said
Scheier, who founded Runway of
Dreams in 2014 to urge fashion
leaders to embrace people with
disabilities as consumers, cre-
ators and models. “It’s no differ-
ent than plus sizes, petites and
maternity,” Scheier said. “If you
can find clothes for dogs, but not
for people with disabilities, that
is not right.”
Tommy Adaptive, part of the
Tommy Hilfiger brand, debuted in
2016, bringing the designer’s sig-
nature sporty-preppy look to
young people with disabilities.
Scheier recalled demonstrating
Oliver’s made-in-the-kitchen jeans
to Hilfiger executives while ex-
plaining the concept, and its im-
portance, to them. Tommy Adap-
tive for adults followed in 2017.
Three years ago, Target intro-
duced sensory-friendly kids’
clothes as part of its Cat & Jack
brand, which features soft fab-
rics without irritating tags or
pockets. There are also choices
for adults, and ongoing research
and focus groups driven by con-
sumer requests, said Julie Gugge-
mos, Target’s senior vice presi-
dent of owned brand manage-
ment and product design.
Zappos, the online shoe retail-
er, has an adaptive design Web
page offering multiple clothing
and footwear brands, including
Hilfiger, Camilleri and Nike. The
athletic shoe behemoth sells sev-
eral versions of its FlyEase sneak-
ers with heel zippers and Velcro,
or hook-and-loop, fasteners for
easier dressing for everyone.
“People make judgments
about who you are within 30
seconds of meeting, so what you
wear is important to your self-es-
teem,” said Brenda Wilton of
Greenville, S.C., creator of Au-
thored Apparel for women and
men, inspired by her dapper fa-ther, who was appalled by exist-
ing adaptive choices after a hos-
pital stay.
Her go-to outfit, which hits
mid-calf, is a $90 gray shift that
she wears belted and hiked above
the knees, often with stilettos.
For those who cannot raise their
arms overhead (including Wil-
ton, who suffers from recurring
upper body pain) or stand up, the
dress can be pulled on from the
ankles while seated.
It’s stylish enough to be worn to
the theater, a business lunch — or
chemotherapy owing to dual zip-
pers that angle downward from
the neckline. An unintended bo-
nus: the unzipped bodice works
for nursing mothers. Wilton calls
her clothing “normalized,” not
“adaptive,” because she said the
latter word can carry a stigma.
Semantics aside, clothes that
fit properly “increase confidence
and independence,” said Alette
Coble-Temple, a psychology pro-
fessor at John F. Kennedy Univer-
sity in California and a disability
rights-activist.
Although she wears conven-
tional garb, the 2016 Ms. Wheel-
chair America winner said
friends with disabilities are
thrilled that newer adaptives
“look hip, and they can get into
them without having to contort
their body.”
For Carolyn Pioro, a circus
aerialist who became a quadri-
plegic after a trapeze accident in
2005 while in her 20s, her cus-
tom Izzy Camilleri coat “was a
game changer.” Cut short in back,
with capelike arms and a high
collar, it’s easy for others to help
her with it.
“No one has to lean me for-
ward in my chair or raise my
arms or do any sort of ‘Carolyn
manipulation’ in order to get it
on or off. I’m comfortable asking
my friends of either genders to
help me on a night out, without
the task being too overwhelming
for any of us.”
With spiky red hair and crim-
son lips, the fashionable Toronto
freelance writer and fact-checker
presents a powerful case for up-
ping the style quotient of adap-
tive design.
“I’ve had [the coat] for years
and I still love it,” she said. So do
strangers who stop by her wheel-
chair to admire it.
Her trapeze accident may
have, at times, “taken my digni-
ty,’’ she said recently by phone,
but it certainly “did not take my
vanity.”
[email protected]Annie Groer is a Washington
journalist, formerly with The
Washington Post, who writes widely
about design, culture and politics.People with disabilities see a
fitting improvement in attire
The decision
seemed
straightforward.
Bob McHenry’s
heart was failing,
and doctors
recommended
two high-risk surgeries to restore
blood flow. Without the
procedures, McHenry, 82, would
die.
The surgeon at a Boston
teaching hospital ticked off the
possible complications. Karen
McHenry, the patient’s daughter,
remembers feeling there was no
choice but to say “go ahead.”
It’s a scene she’s replayed in
her mind hundreds of times
since, with regret.
On the operating table, Bob
McHenry had a stroke. For
several days, he was comatose.
When he awoke, he couldn’t
swallow or speak and had
significant cognitive impairment.
Vascular dementia and further
physical decline followed until
the elderly man’s death five years
later.
Before her father’s October
2012 surgery, “there was not any
broad discussion of what his life
might look like if things didn’t go
well,” said Karen McHenry, 49,
who writes a blog about caring
for older parents. “We couldn’t
even imagine what ended up
happening.”
It’s a common complaint:
Surgeons don’t help older adults
and their families understand the
impact of surgery in terms people
can understand, even though
older patients face a higher risk
of complications after surgery.
Nor do they routinely engage in
“shared decision-making,” which
involves finding out what’s most
important to patients and
discussing surgery’s potential
effect on their lives before setting
a course for treatment.
Older patients, it turns out,
often have different priorities
than younger ones. More than
longevity, in many cases, they
value their ability to live
independently and spend quality
time with loved ones, said
Clifford Ko, professor of surgery
at UCLA’s David Geffen School of
Medicine.
Now new standards meant to
improve surgical care for older
adults have been endorsed by the
American College of Surgeons.
All older patients should have the
opportunity to discuss their
health goals and goals for the
procedure, as well as their
expectations for their recovery
and their quality of life after
surgery, according to the
standards.
Surgeons should review their
advance directives —
instructions for the care they
want in the event of a life-
threatening medical crisis — or
offer patients without these
documents the chance to
complete them. Surrogate
decision-makers authorized to
act on a patient’s behalf should
be named in the medical record.
If a stay in intensive care is
expected after surgery, that
should be made clear, along with
the patient’s instructions on
interventions such as feeding
tubes, dialysis, blood
transfusions, cardiopulmonary
resuscitation and mechanical
ventilation.This is a far cry from how
“informed consent” usually
works. Generally, surgeons
explain to an older patient the
physical problem, how surgery is
meant to correct it and what
complications are possible,
backed by references to scientific
studies.
“What we don’t ask is: What
does living well mean to you?
What do you hope to be able to do
in the next year? And what
should I know about you to
provide good care?” said Ronnie
Rosenthal, a professor of surgery
and geriatrics at Yale School of
Medicine and co-leader of the
Coalition for Quality in Geriatric
Surgery Project.
Rosenthal tells of an 82-year-
old patient with early-stage rectal
cancer. The man had suffered a
stroke 18 months earlier and had
difficulty walking and
swallowing. He lived with his
wife, who had congestive heart
failure, and had been
hospitalized with pneumonia
three times since his stroke.
Rosenthal explained to the
man that if she operated toremove the cancer, he might land
in the ICU with a breathing
machine and then end up at a
rehabilitation facility.
“No, I don’t want that; I want
to be home with my wife,”
Rosenthal recalled his saying.
The man declined the surgery.
His wife died 18 months later,
and he lived another six monthsbefore he had a fatal stroke.
Surgeons can help guide
discussions that require complex
decision-making by asking five
questions, said Zara Cooper,
associate professor of surgery at
Harvard Medical School:
How does your health affectyour day-to-day life? When you
think about your health, what’s
most important to you? What are
you expecting to gain from this
operation? What health
conditions or treatments worry
you most? And what abilities are
so critical to you that you can’t
imagine living without them?
Cooper recalls an 88-year-old
man seriously injured in a car
crash arriving in the emergency
room several years ago.
“When we started explaining
to his family what his life would
be like — that he would be highly
functionally dependent and not
able to live independently again
— his wife said that would be
absolutely devastating, especially
if he couldn’t ski,” Cooper said.
“We didn’t even anticipate this
was in the realm of what
someone this age would want to
do.”
The family decided not to
pursue treatment, and the
patient died.
Sometimes surgeons make the
misguided assumption that older
patients want to follow
recommendations rather than
having input into medical
decisions, said Clarence
Braddock, professor of medicine
at UCLA. In focus groups,
97 percent of seniors said “I
prefer that my doctor offer me
choices and ask my opinion,”
according to research Braddock
published in 2012.
Yet in another study involving
older adults, Braddock found
that orthopedic surgeons rarely
discussed the patient’s role in
decision-making (only 15 percent
of the time) or assessed the
patient’s understanding of what
surgery would entail (12 percent
of the time).
At the University of Wisconsin
at Madison, Margaret Schwarze,
an associate professor of vascular
surgery, has developed a tool
called “best case/worst case” to
help surgeons communicate
more effectively with older
patients. “The idea is to tell the
patient a story in terms they can
understand,” Schwarze said.
Instead of citing statistics on
the risk of pneumonia or
infection, for instance, a surgeonwould explain what might
happen if things went well or
badly. Would the patient be in
pain? Would she need nursing
care? Would he be able to return
home and do things he liked to
do? Would she land in the ICU?
Would he be able to walk on his
own?
A similar range of possibilities
is presented for a treatment
alternative. Then the surgeon
identifies the most likely
outcomes for surgery and the
alternative, based on the patient’s
circumstances.
“Going through a major
operation when you’re older is
going to change your life,”
Schwarze said. “Our goal is to
help older patients imagine what
these changes might look like.”
Because of her father’s
experience, Karen McHenry was
cautious when her mother,
Marjorie McHenry, fell and broke
five ribs in fall 2017. At the
hospital, doctors diagnosed
significant internal bleeding and
a collapsed lung and
recommended a complicated
lung surgery.
“This time around, I knew
what questions to ask, but it was
still hard to get a helpful
response from the surgeons,” she
said. “I have a vivid memory of
the doctor saying, ‘Well, I’m an
awesome surgeon.’ And I thought
to myself, ‘I’m sure you are, but
my mom is 88 years old and frail.
And I don’t see how this is going
to end well.’ ”
After consulting with the
hospital’s palliative care team
and a heart-to-heart talk with her
daughter, Marjorie McHenry
decided against the surgery.
Nearly three years later, she’s
mentally sharp, gets around with
a walker and engages in lots of
activities at her nursing home.
“We took the risk that Mom
might have a shorter life but a
higher quality of life without
surgery,” Karen said. “And we
kind of won that gamble after
having lost it with my dad.”This column is produced by Kaiser
Health News, an editorially
independent news service that is not
affiliated with Kaiser Permanente.For older people, surgery poses risks that aren’t always made clear
MICHELLE KOEHLER
Maggie Koehler, 14, models a pair of Downs Designs jeans from
NBZ Apparel International. Sitting next to Maggie is her
grandmother, Karen Bowersox, who founded the company.JESSIE NINESTEIN
Brenda Wilton, creator of Authored Apparel, wears a dress with
angled front zippers to allow easy access.Navigating
Aging
JUDITH
GRAHAM
“What you wear is
important to your
self-esteem.”
Brenda Wilton of Authored Apparel
for women and menISTOCK“Going through a major
operation when you’re
older is going to change
your life.”
Margaret Schwarze, associate
professor of vascular surgery