Since a few days, we have
been reading about a wife from Mathura who has been visiting health centers
carrying her husband on her back whose leg has been amputated. She has been
going through this ordeal as they require submitting a disability certificate
so that they can avail free wheelchair from the government.
After reading this
and some of the other instances in past and also from my personal experience,
where we see how hospitals, health centers, and people treat disabled people,
only one question always crosses my mind…Why so much apathy towards disabled
people?
My husband always says out
of fourteen years most of our time is mainly spent either in therapy or waiting
outside an OPD or in a doctor’s clinic or some hospital.
But in these fourteen years
one thing I realized, India is not a place for people with special needs.
NO …it’s
not. Period.
Here you don’t get
facilities nor is an easy place for such people or for their parents. It’s a
big long, curvy road with lots and lots of potholes and road blocks.
Just a few months back we
had gone for our daughter’s disability certificate renewal.
This certificate is a proof that a child/person has a certain disability and
therefore s/he can avail certain benefits.
First of all these
certificates are not issued at all medical or health centers. You have to go
government-run hospitals in your district that have been given the authority to issue those
certificates after thorough verification and checkup of the patient. These
certificates are issued on a particular day of a week/month and these centers
have been issuing it for ages.
Statutory
warning…these places are not for faint-hearted people.
Inspite of so many
years, there is no proper waiting area for people who come from all over the
district, early in the morning and wait in a queue. Come rain or hail (in
India, hot blazing sun), parents with their special needs children or adults with
the disability have to wait in open space for hours for registration and
getting required forms.
That’s step one. Then
step two depending on their disability they have to go to different directions
(here departments) for further processing. And these can be anywhere in the
vicinity. That takes a couple of hours. Then after the form is issued, there is
another queue for getting signatures of the civil surgeons. Then submitting the
form and getting the certificate takes another couple of hours…
Consider one reaches the
center at 8 am and all this process starts at around 10 am, which will complete
until lunch time depending on availability and blessings of the electric board
and internet connectivity along with other factors.
Can you imagine, the
parents with special needs children, people on crutches standing in the rain or
scorching heat since early morning, then made to go from one place to
another???
Moreover, the place stinks.
Imagine a hospital, where a person is supposed to get healed, stinking of urine,
has junk dumped here and there, has narrow, congested corridors, no name of
cleanliness and sanitation and not to mention the pathetic staff. There is not
even a proper place where children can be fed or changed if they soil
themselves.
In some centers, one has to
make multiple visits. First for getting forms, then registration, then they
give an appointment when you have to take the child for examination and then
finally to get the certificate.
I need to ask the
Government of India and the hospital staff why such step-motherly treatment
towards them?
There is no proper source
of information nor are the facilities cheap which everyone can afford. Most of
therapies and treatments are costly which only people with the sound financial
background can opt for. What about lower strata of people???
Though the government has
now some schemes like Niramaya, which give some
amount of money but frankly, it's not sufficient. The amount one gets from the
mediclaim is much less than what an average child’s medicines and therapies
cost.
Even then these schemes are
not known to all. Some doctors or therapists don’t share the required
information with parents for reasons known only to them.
Why? Why so much apathy
towards special needs children and their family?
Not to mention the
attitude of some doctors, some of which I had already written about (Life's Challenges and Hospital-place of healing or mental
torture).
Many doctors make the
patients wait for hours. I am not blaming them saying that they are doing it
purposely. They might be having some genuine reason for being late. But I had
been to a doctor who unfortunately lives in my complex and told me to reach his
clinic at 11 a.m. but he himself left the house at 12.30p.m. Now, what to
say???
This is not just one case.
Many instances I have seen where the doctor comes to OPD/clinic (if s/he is
staying nearby) only after their staff informs them about ‘N' number of
patients have arrived.
All these are not figments
of my imagination but based on personal experience and true incidents too.
I know you will say
‘Doctors are humans too’. I am not denying it. They might have had late night
emergency call or any other genuine reason. But can anyone spare a thought for
us parents and our kids who are already going through social, emotional, mental
and physical upheaval?
We don’t want sympathy or
pity or even empathy… all we want our kids to avail facilities and treatments
which would help them lead their life without distress and with dignity. Is it
more to ask?
Like we say “All five
fingers of our hand are not same”, similarly not all doctors are
same. I have met some doctors who reach their clinic/OPD well before
time and offer concessions to patients who have financial constraints whereas
some think that we parents are some money minting machines.
I have no hatred for
towards doctors but am just bringing out the plight of people and families of
children with special needs go through.
Some will say “What’s the
big deal about having to wait for few to couple of hours”…
Nothing wrong but does anyone know, taking
care of a special needs child takes a toll on the caretaker also. Most of the parents
themselves suffer from back pain, spondylitis, blood pressure and what not. Imagine what will standing
or sitting in some uncomfortable position for hours with our squirming and squiggling children do to
their backs?
Why can't people from this noble profession do
something about this and change the way this system works and do something for
our children with special needs?
