H for Hospital's Apathy Towards People With Disabilities

           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?