DESPITE being involved in
the business of creating awareness about disability through my own life for
several decades now, there are days when I feel down and wonder how effective have
all that hard work been over the years.
How much, for instance, do people
who don’t have any disabilities in their lives truly understand what it feels
like for those of us who do?
From the ordinary folk out there
in the streets to even people who actually work with the government trying to
solve our problems, it is not unusual to come across people who haven’t really
a clue about what life is like in a wheelchair, using a white cane or even
living in a world of complete silence.
Last Friday several of us in
wheelchairs, at least, got together to have our voices heard.
We held a press conference (PC) in
Petaling Jaya. Our audience? The Human Rights Commission of Malaysia - better
known as Suhakam.
Even though Suhakam was
extremely kind and conscientious to come over to our venue – instead of having
us go to theirs, getting a bunch of people in wheelchairs together is not the
simplest thing on earth.
We had to spend hours planning
for quite a few vehicles that could accommodate wheelchairs. Then we needed to
place at least one able-bodied helper to one wheelchair person.
There was also the
disabled-friendly toilet issue to think of – or, under the circumstances – get
some to wear diapers instead.
Being able to sit up for long
hours was another issue. Some of us had pressure sores in our buttocks. In
order to get them healed, we are medically advised not to put pressure on them
by sitting.
However, because the issues at
our press conference were vital to our ongoing survival and achieving a high
quality of life, we decided to turn up despite the odds.
The PC called for several basic
things:
Ø A significant improvement of current healthcare
services. The PC heard that despite the fact that healthcare for
handicapped Malaysians is said to be free in government hospitals, this was not
entirely true in a number of cases. Disabled patients who seek treatment for
potentially fatal pressure and bed sores are told to buy medication such as
creams, plasters and even cotton swabs gauze in outside pharmacies that often
cost a bomb. The disabled also felt strongly that nurses from nearby government
hospitals should make home visits for wound dressings and other medical help as
is done in overseas countries. This is very helpful for those who don’t have
transport or anyone in order to get to the hospital. The PC also learnt of
instances where patients are sent home midway through the recovery of their
sores and are forced to do dressings at home. These “early discharge” episodes
are because there are no beds left for other incoming patients in wards. Many
disabled persons have died as a result of their wounds getting infected or
worse at home.
Ø Trained caregivers for profoundly disabled
Malaysians. The government needs to come with a clear policy
on how to care for those ageing with disabilities especially as Malaysia is
expected to reach an ageing nation status by 2035. Caregivers should undergo
special training. Levy and other fees should be waived for caregivers for the
disabled. This is especially critical when loved ones have passed away. Care
should be taken that poorer communities also have access to such services. Steps
should be taken to focus on disabled persons in the community rather than any
move to institutionalise people.
Ø Special financial aid for all disabled
Malaysians of all disability categories. A flat rate of RM500 should be given to all
disabled persons in Malaysia, regardless of their handicaps or their employment
status. This should be given in addition to whatever financial benefits some
might be receiving. The money will go a long way to help the handicapped. From rising
living costs, to repairs of assistive devices, transport and caregiver expenses.
Ø Pensions of government servants to their
disabled children should include all categories of disabilities and not some
only. The blind and Deaf should equally qualify for the benefit
when their parents have passed on.
The one hour PC ended with the
group handing over the memorandum to Suhakam Commisioner James Nayagam who
promised to pursue each point of the request with the government seriously.
The group also said they were
hoping that tomorrow’s 2013 budget speech will also cover some of these
issues.
The End
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