ANTHONY THANASAYAN July 2003 The Star Malaysia

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Thursday, July 03, 2003
Listen, learn

By ANTHONY THANASAYAN
STRUGGLING with the physical impact of a chronic or life-threatening illness
is hard, but having to cope with the other effects of illness, from
diminished capacities and loss of income to a future filled with
uncertainties (something that people with disabilities often face), is an
equally tough challenge.

A report broadcast on the Voice Of America (VOA) from Washington DC last
month revealed that in recent years, several community organisations in the
United States have been formed to help people cope with challenges of this
nature.

Listening to the report, I feel that there is much that we in Malaysia can
learn from the example set by the Americans - especially in the way in which
we care for the disabled and other marginalized groups in our society.

The VOA account began with one grassroots group called Helping Our Women
(HOW) in Provincetown, Massachusetts, that devotes itself entirely to
helping women.

Executive director Irene Rabinowitz has a client list of 163 local women
within HOW's programme, which runs on private contributions.

HOW conducts two weekly support groups - one specifically for women with
cancer while the other is for women with any kind of chronic illness.

HOW not only gives out financial assistance to low-income women who have to
deal with their illness but also includes transportation services for
clients.

The women on HOW's client list suffer from a wide variety of ailments
including muscular dystrophy, AIDS, cancer and severe depression.

HOW's goal for all its clients is to help them regain some control over
their lives. "When people become ill, they lose control of so many things,
such as the ability to make a living, and sometimes even to take care of
their basic physical needs," said Rabinowitz.

"HOW responds by not putting conditions on them or their disabilities as we
are not here to fix people up," she pointed out, "but to help our clients
cope with something that has impacted their lives - quite often very
greatly."

HOW also helps women build up self-confidence, which can suffer a severe
blow from the weakness or disability that illness can bring.

Many, for instance, are daunted by the complex healthcare bureaucracy they
must face, or are unsure about how to fill out the complex forms necessary
to qualify for state housing assistance.

According to HOW administrator Terri Nezbeth, showing women how to fight to
protect their interests is one of her job's chief pleasures.

Speaking on the VOA, Nezbeth said she is thrilled when she is able to help
women who thought that they were unable to accomplish things for themselves
like showing up at their doctor's office, filling out an application for
housing (and later getting the house), etc.

HOW's cancer support group has been a boon to Fayette Watkis, who was
diagnosed with breast cancer five years ago. Watkis initially felt confused
by the seemingly contradictory advice her doctor gave her.

"I was one of those raised to believe that the doctor was God and you don't
question anything (he) said.

"But I ended up actually firing my doctor because of the support I was
getting through HOW, and have since moved on to a much better doctor who
listened to me and didn't tell me that I was just an over-worrier," she
said.

Sometimes, clients in a support group choose to test their physical
abilities together.

For example, HOW recently sponsored a day-long retreat to a lighthouse. Last
spring, several women in the cancer support group took a lesson in open-sea
kayaking.

These sorts of activities remind women that their diagnoses do not define
them, and that fun can be beneficial.

But for Susan Mitchell, a breast cancer survivor, the most wonderful thing
about the support group is the sense of genuine community and belonging.

Mitchell said the fact that everyone realises that they're there for each
other and that they make good listeners is the key to the group's success.

Rabinowitz often receives queries from people who want to start a similar
community group of their own.

To begin, she said, simply find a like-minded set of friends and meet
regularly, get to know each other, and discover shared goals and available
resources.

"Even if you have to meet in a village square sitting on benches, or a local
religious establishment, as long as you can meet and talk about your issues,
(that is important).

"From then on, it grows and grows - just from a bunch of women sitting
around and talking," she said.

Rabinowitz acknowledged that finding a "safe space" has been easier in
ultra-liberal Provincetown than it might be in many parts of the world.

There may be cultural barriers and shame surrounding illness, she said, but
one has to let go of that and say that it's no one's fault. "When you're
dealing with someone with an illness," added Rabinowitz, "one must realise
that that person needs assistance more than anything else - and it must be
done unconditionally.

"Just open your heart, listen and learn!"

Rabinowitz and HOW can be found on the WebPages by browsing www.helpingour
women.org.
Thursday, July 10, 2003
Staying connected

By ANTHONY THANASAYAN
MAKE no mistake about it folks: the integral part that telephones play in
the lives of people with disabilities can never be over-emphasised.

Apart from the convenience that these communication gizmos offer,
telephones - whether landlines or mobile phones - act as a lifeline for
Malaysians with handicapping conditions.

And it doesn't take a lot of imagination to realise why this is so.

The blind rely on them so that they don't have to needlessly venture out on
their own into a dark and inimical world beyond their home perimeters where
open drains and manholes lurk to gobble them up.

Those without hearing also use the telephone in ingenious ways by getting
their hearing chums and families to act as interpreters in making and
receiving calls for them.

Then there is the recent heaven-sent alternative called SMS (short messaging
services) through which the hearing impaired can communicate without
troubling others. Just think how long it would take for the deaf to say
something otherwise?

In reality, however, very little consideration has been given by the
respective phone companies to, borrowing from their popular taglines, "make
their communication needs easier."

There is plenty that the communication honchos can do but don't.

A flat rate for landlines, cancellation of monthly mobile access fees,
cheaper calls and a substantial increase of free SMS services would greatly
assist a disadvantaged community like the disabled.

A personal survey that I recently conducted came up with shocking results.

Celcom, which I recall, was the first mobile telephone company to offer
special discounts for disabled subscribers close to 10 years ago, earning
them the thumbs-up from disability organisations.

Today, unfortunately, they rank the lowest in terms of services for disabled
subscribers. Through the years, Celcom has never improved or expanded their
services for its disabled subscribers.

I am still paying the same RM30 a month for access fees which is 50% less
than the RM60 for non-disabled subscribers as I did when I first joined
Celcom shortly after the deal for the disabled was introduced.

Not only does it remain as the only discount I get as a disabled subscriber
from Celcom since day one but also while non-disabled subscribers continue
to get rewarded with RM10 discounts at regular intervals for their loyalty,
disabled subscribers get nothing no matter how long they have remained
faithful to the company.

Maxis offers a better deal. As much as RM150 in starter fees is waived and
approximately RM40 is further reduced for high usage and early payments.
(Some of these features are also available to non-disabled subscribers).

Of course, the biggest offer for disabled mobile phone subscribers comes
from Maxis with their 100 free SMS a month, which is a great boon,
especially to the deaf.

With this, Maxis subscribers with disabilities such as the deaf and
physically disabled will be able to send out and receive important and vital
information to people such as medical health professionals, support and peer
counselling groups and others.

However, there is a major flaw in Maxis' current scheme for the disabled
(introduced in September 2001) that requires urgent and immediate
rectification.

For some reason, people with learning disabilities cannot apply as disabled
subscribers.

Despite my numerous queries to Maxis consultants on their Maxis Helpline
123, I was unable to get a reason for the differential treatment accorded
subscribers with learning disabilities, which is most puzzling.

Peter Young, a director of Dignity & Services (an advocacy group for persons
with disabilities that has existed for over a decade), told Wheel Power last
week that to exclude learning disabled wannabe subscribers is to
discriminate against them.

"I personally know a dozen learning disabled mobile phone subscribers
(prepaid or subscribers with other mobile phone companies) who both own and
use handphones perfectly without problems and are responsible users," the
77-year-old said.

"I see no reason why they shouldn't enjoy using such facilities," Young, a
non-disabled Maxis mobile phone subscriber, said.

Eugene Lau Boon Leng, 29, concurs.

In an e-mail to Wheel Power last week, the learning-disabled office
assistant who works in Shah Alam wrote: "I've been working for about four
years now. I have to rely on my dad or mum to take me to work every day
because I have difficulty going out alone.

"My disability robs me of my independence to respond to certain situations
especially in new surroundings like road crossings though people who meet me
for the first time would never suspect this of me.

"Despite this, I am still able to use the mobile phone quite responsibly.

"I had no choice but to get a Maxis prepaid line as I couldn't subscribe
under the 'disabled' category even though I have a government card verifying
my disability status.

"My special card allows me to qualify for most other discounts offered to
the disabled community as a whole with no problems. The mobile phone is
vital in helping me keep in touch with my family, friends and colleagues and
like others, I also occasionally use it to download fun graphics and games.

"I depend on my mum for my monthly hand phone 'top-ups' as my pay is not
enough to cover my other expenditures such as medical, and others. I
sincerely hope Maxis will have a heart for all of us and come up with smart
and workable ways in which we can avoid using the inflated prepaid accounts
so that our calls can be affordable."

All that's left now is whether Maxis will answer the call.

Thursday, July 17, 2003
Struggle to be free

By ANTHONY THANASAYAN
I WAS heading home on July 8 with one of my service canines after a visit to
our friendly vet when I first heard the news over the radio.

Singapore Radio interrupted its broadcast just before 7pm to bring in a live
press conference from the medical team at the local Raffles Hospital.

The doctors who had tried to surgically separate the 29-year-old conjoined
Iranian twins, Ladan and Laleh Bijani, who were fused together from birth in
one skull but with separate functioning brains, solemnly and sorrowfully
announced their failure in their mission - and that the girls had died in
the Lion City as a result.

Like most Malaysians, I was devastated by the news.

Conjoined Iranian twins, Ladan and Laleh Bijani, 29.
I recall needing to drive myself around the block several times before I
could finally come to terms and comprehend the depths of what had happened.

Although we all knew that the never-before-attempted-surgery had only a
50-50 chance of working out, like most of my friends, we were somehow only
expecting and praying for nothing but the best to happen for the Bijanis.

The woeful news of the women's deaths first brought on lots of tributes and
praise for not only the girls who were well-known in Iran for their courage
and academic success, but even for the surgeons who performed the operation.

Then slowly came the blame and shame.

One of the most scathing of these was from the Bijani's adoptive father,
Alireza Safaian, a doctor himself who had raised the girls.

"When they took them to Singapore, I knew they would bring back their
bodies. They took them there and killed them," Alireza was reported to have
said.

There were also, upon hindsight, serious medical and ethical factors
involved in the outcome of the twins' surgery.

Dr Richard Nicholson, editor of the Bulletin of Medical Ethics, told BBC
Online that in most cases the risk of death would be rated too high for
doctors to proceed with surgery.

Dr Nicholson, however, conceded that imaging techniques were not
sophisticated enough to allow doctors to know with precision how surgery
would develop before they started.

"Doctors have a duty to act in the best interests of their patients, and in
retrospect one is bound to conclude that maybe this surgery (Bijanis) was
misguided," he said.

"These twins were not suffering from a life-threatening condition, and
although there were many things wrong with the quality of their lives, they
had coped for 29 years."

Dr Nicholson added that he had concerns about the fact that it would have
been impossible to brief each twin separately about the risks.

Thus it was possible that one twin could have pressured the other to go
ahead against her will, he concluded.

The Bijani debate was also a hot issue in discussions on international
disability chat rooms and newsgroups.

Some wondered if conjoined twins could be considered "disabled" at all,
whilst others called it a "spectacular disability".

Whilst almost everyone appreciated and respected the struggle that conjoined
twins had to go through to try to be independent of each other, they were,
however, more concerned about disabled persons being treated as "freaks" of
society where they needed to be studied by the medical world.

Sometimes society tends to go to extreme lengths to try and "fix" disability
hoping that it will go away - instead of doing the right thing by facing up
to a situation and offering societal support and total acceptance that
people with disabilities need, said one disability expert.

There were other more blunt questions and comments: is death considered a
"better" option than life for conjoined twins and severely disabled people?

(Incidentally, some chums with disabilities confessed to me that given the
chance, they would much rather go through life as a conjoined twin than to
be blind or crippled as they are now.)

Or could situations like that of the Bijanis and others be a subtle form of
eugenics (the race to create a better race) at play, or perhaps plain
scientific research being pushed to the limits to try and eliminate the
existence of disabled people by trying to "correct" those whom we perceive
as having "birth defects"?

Even if disabled people request for surgery, do they have access to relevant
advisors, say, other disabled people who would be in the best position to
proffer the right kind of counsel?

All this brings to mind my own extraordinary beginnings.

I was born with spina bifida, (a congenital condition of the spine) which
showed up as a lump on my lower back that was the size of a small marble
when everyone first noticed it.

The doctors at the time wanted to surgically snip it off to "improve my
fate" but warned that I would only have a 50-50 chance of survival.

They also said that with my disabilities and possibly newer ones that could
come later on, my life really wouldn't amount to much.

My family vehemently refused (thank God!) and I still have the lump with me
today except that it is about the size of a football now that's nicely
concealed by the back of my wheelchair.

Imagine for a moment the unthinkable if my parents had listened to the
doctors and gone ahead with the surgery.

Gosh, there just might not be a Wheel Power column today!
Thursday, July 24, 2003
Focus on Alzheimer

By ANTHONY THANASAYAN
IT WAS Alzheimer's Awareness Week from July 6 to 12 and BBC Online had much
to say about the disease - and how it affects people in Britain - as part of
its health awareness campaign.

There are over 700,000 people in Britain with dementia. About half of them
have Alzheimer's disease, which is the most common form of dementia.
(Dementia is a serious mental disorder caused by brain disease or injury
that affects the ability to think, remember and behave normally.) Symptoms
include memory loss, forgetfulness and confusion.

This year's Alzheimer's Awareness Week in Britain focused on the particular
concerns people with dementia and their care-givers have about eating and
drinking.

The Alzheimer's Society is in the process of publishing a report based on a
survey of the personal experiences of almost 4,000 caregivers and
professionals in relation to nutrition for people with dementia.

What causes Alzheimer's disease?

About 450,000 people in Britain have Alzheimer's. The exact causes of the
disease are not yet known, but the biological process has been identified.

Alzheimer's destroys cells in the brain, which in turn disrupts the
transmitters that carry messages to the brain, in particular those
responsible for storing memory.

Scientists have also identified a number of risk factors. Age is one of the
most significant factors. The chances of being affected are fewer than 1 in
1,000 under the age of 65 years old, and one in five over the age of 80.
This clearly suggests that the risk increases with old age, although the
youngest person with Alzheimer's is only 30 years old.

Other risk factors include injuries to the head (such as people who
sustained injuries to the head, and lost consciousness, like boxers) and a
genetic predisposition.

There are about 200 families in Britain which have a genetic history of
dementia.

Typical signs of Alzheimer's are lapses of memory, mood swings, and
confusion in finding the right words for everyday objects. These symptoms
usually emerge over six months or more.

As the disease develops, a person may routinely forget things (such as
appointments, names and faces), experience mood swings or have difficulty in
handling money and understanding what is being said to them.

In advanced cases, the brain becomes more damaged and sufferers experience
severe memory loss and physical disability.

A person with advanced dementia may become totally dependent on a caregiver
or nursing care. However, as with many other conditions or illnesses, early
diagnosis means management of Alzheimer's can be started as soon as
possible.

Scans and simple memory tests will determine whether a person can store
information in the memory. These tests are then repeated after a few months
and used as a comparison.

People with the disease usually live for five to 10 years after diagnosis,
albeit with close supervision and nursing care.

Memory aids can be useful to deal with some symptoms of the disease.

There are new drug treatments, which although not a cure, can delay the
onset of symptoms for one to two years.

In addition to funding research into the cause, cure and care of all forms
of dementia, the UK Alzheimer's Society provides information, education and
support to people with dementia, their caregivers and healthcare
professionals.

There are more than 300 local support groups in Britain together with a
national helpline service, concluded BBC Online. Readers may visit the
society's website at www.alzheimers.org.uk. Additionally, you may also click
on BBC Health's Alzheimer's features at www.bbc.co.uk/health/older and
www.alzheimers-research.co.uk.

Hope at home

Meanwhile, the Kuala Lumpur-based Alzheimer's Disease Foundation Malaysia
(ADFM) moved to its new address at 9A Lorong Bukit Raja, Taman Seputeh,
58000 Kuala Lumpur, in March.

In January, ADFM together with the Ipoh Specialist Hospital, organised a
public awareness talk on Alzheimer's for a small crowd in Ipoh. ADFM also
held its annual "Thank You" dinner in the same month. The wide variety of
food, raffle tickets and prizes donated by well-wishers helped to make the
dinner a big success. Perhaps the most encouraging of recent happenings for
the ADFM is the emergence of new voices which dare to share moving stories
of how they cope when a family member is struck by Alzheimer's.

A 55-year-old retired assistant branch bank manager and now a full-time
caregiver shared about her struggles in caring for her 83-year-old mum who
has Alzheimer's, in ADFM's recent newsletter.

She revealed that her initial ignorance of the disease had led her to seek
exorcism of evil spirits so that her mum could return to normal.

Now with the support of her religious community, and by attending ADFM's
support groups for Alzheimer's sufferers, she is better able to cope with
the situation.

Besides Kuala Lumpur and Petaling Jaya, ADFM has active support groups in
Penang, Malacca and Johor Baru.

For more information about Alzheimer's, contact 03-22603158, 22749060 / fax:
03-22738493 / e-mail: lzheimers@pd.jaring.my / website: www.adfm.org.my
Thursday, July 31, 2003
No freak

THE response to my article on the abortive surgical mission on the conjoined
Iranian Bijani twins a fortnight ago was overwhelming.

The majority of non-disabled writers reacted by saying that they thought no
one should be blamed for the deaths as the readers perceived life as
conjoined persons too much of an impossibility due to the unbearable burden
of limited freedom and loss of privacy for such twins.

However, writers with disabilities, not surprisingly, saw things
differently.

A deaf reader felt frustrated with the hearing world every time they tried
to impose "their world" on the deaf by encouraging cochlear transplants so
that they can "hear better" or forcing them to learn to lip read instead of
the hearing world making an attempt to learn sign language.

Dr. Gregor Wolbring, a thalidomider, is a research scientist and a member of
the board of the Canadian Commission for Unesco.
But, perhaps, the most enlightening and thought-provoking views on the
subject of conjoined twins (and disability) yet comes from someone who has
been keenly following the ethical issues of Siamese twins for some years
now.

Dr Gregor Wolbring is a research scientist at the Department of Biochemistry
and Molecular Biology at the University of Calgary in Canada.

An Adjunct Assistant Professor of Community Rehabilitation and Disability
Studies and member of the board of the Canadian Commission for Unesco, Dr
Wolbring is a thalidomider, which he defines as "a person born with
non-mainstream body compositions without legs as a result of his mother
taking the drug thalidomide during pregnancy."

He writes: "People all the time have dreams and wishes they'd like to see
fulfilled. In the Bijani twins' case, their dreams were to live separate
lives.

"The above-described dynamic is nothing new and happens all the time. People
have the desire to be different from what they are now like former Superman
star, Christopher Reeve, who wants to regain his ability to walk again,
which he lost after a riding accident.

"Blind people want to see, deaf hear, some women wish to be a man and
vice-versa. And there are people even who are known as 'apotemnophiliacs'
who prefer to amputate their own limbs."

"The way I see it, people have two options: They can define their perceived
shortcomings within a medical deficiency framework, which would
automatically necessitate a focus for a medical cure for themselves.

"Reeve falls under this category and he therefore supports any form of
research that offers him the dream of getting back on his feet again.

"As someone who was non-disabled before, it is understandable that Reeve
perceives that his problems (with his paralysis) would be solved if he could
regain his ability to walk, as this would fit best with the understanding
that he was brought up in.

"However, Reeve could also choose to see his inability to walk within a
societal framework - and decide instead to seriously question society's
focal point and obsession with the need for human beings 'to walk' at all.

"For thalidomiders, society was fast to portray these newborns as 'monsters'
, 'not God-willed', or as 'aberrations'.

"Voices immediately called for their termination on the grounds that such
children without arms or legs were 'much better dead than alive' than to
endure the 'horrors' of being a thalidomide survivor.

"The ones who weren't killed were subjected within the medical framework and
fitted with artificial limbs (where often the feet were amputated to
accommodate the artificial limbs).

"They proved to be nothing more than cosmetic 'improvements' that hardly
functioned.

"Most thalidomiders eventually threw away the contraptions as being alien to
their bodies, refusing to be viewed as 'defects of society'.

"What they saw instead as the real defects in the world was societies'
failure to provide adaptations in their systems (social cures) to fully
accept people and their physical (or mental differences) so that they could
live out their lives like everyone else.

"In this light, sadly, the Bijanis' case has only displayed once again that
money, publicity and public sympathy and support are available if the
so-called 'disabled' wishes for a medical cure.

"However the hard facts remain that such sympathy/support publicity and
money do not exist when disabled people require and ask for social cures
instead.

"The Bijanis might have wanted to take the high risk of death to achieve
that goal.

"But there are other conjoined twins alive today who in fact cherish and
treasure their existence and way of lives being stuck to their siblings, and
do not for the world wish to be separated.

"But we hardly get to read about their lives and their wishes because of the
demands of the media.

"What's even more important now is that the focus of medical cure versus
social cure will have huge impact on everyone soon.

"The converging abilities of the number of modern fields of sciences such as
biotechnology, nanotechnology, information technology and cognitive sciences
will all increase our abilities to modify and manipulate human beings and
their abilities as never before.

"They will increase the desire of human beings to see him/herself as a
defect product in need of fixing through the newest medical and
technological 'fixes' that are made available

"What would happen next?

"Zero in on all the 'defects' in our bodies and seek newer ways to improve
our 'normal' abilities with superhuman vision, leg strength, etc, that would
allow us to be more competitive with each other and justifying it by
defining the now still 'normal abilities' as defects?"

For further information, readers may visit Dr Wolbring's web page at
www.bioethicsanddisability.org.