I believe that everyone has the right to 'live life to the fullest'-C.MAHESH

Disability and Human Rights

Background – based on my life experiences:

Life is full of events and experiences for some the change comes by so abruptly and sudden that can either leave the person trapped for life or open up new chapters in the art of living.

It was an uneventful life till my 2nd year degree course in Science at college - a life like the majority of students. Thinngs were going on predictable lines with no particular direction.

It was during the middle of second year, and I was 19 years old, a common viral fever took a totally unpredictable turn in my life. The fever developed into tingling sensation in my limbs and within 24 hours I lost all motor control of my body below my neck. There was nothing that could prevent the degeneration of the motor nerves. After a critical phase of few weeks I managed to survive “most of my muscles had become very weak” The hospital was my home for the next 6 months.

My house was in the first floor, whenever I had to go out of the house, I had to be physically lifted up and down the flight of stairs by my father who was then more than 50 years old.

I missed going out of home – going to college, traveling in a BTS (Bangalore Transport Service – as know in those days), missed playing ‘road-side’ cricket that was followed by the never ending evening chats with friends about ‘interesting people’, movies, higher studies, job opportunities etc.

Friends from college and from the neighborhood slowly faded. Not that they were averse to meeting me but if they had to meet me – they could do so only in my house and usually the conversation would be limited to my health and it soon became boring as there was nothing much to say.

My house became my virtual prison for the next 3 years, although I could regain some of my strength where by I could walk using a walking frame and move using a wheelchair inside the house, me and my family were clueless about my future. It was blank.

If there was something we wanted to do - we were almost surely knocked down by the various ‘obstacles/ barriers’.

Example of some of the thoughts and conversations - ‘I cannot watch my friends play because – how will I get down the stairs?’, ‘I don’t like to be carried by my father because he is old and it is not fair’, ‘I don’t like to be carried by my friends either’, (Do you like to be carried?), ‘I cannot go out of my neighborhood for an ice-cream’ because ‘Taking an auto rickshaw to eat an ice-cream would be more expensive than the ice-cream itself’, ‘Better parcel and eat the ice-cream at home’, ‘I could go to the ice-cream shop on my wheelchair’ – but ‘What will people think of me?’ ‘Who is ready to push my wheelchair?’ ‘The roads are uneven and my wheelchair will get stuck/ break.’ ‘Even if I reach the shop, the ice-creams are served indoors and I cannot go inside the shop because there are 4 big steps’

After around 2 years of my illness, I could amble with the help of a walking frame. I visited my college with a hope of continuing my education. My batch mates had passed out of college, I could recognize few of my juniors but they looked back at me as if I was a total stranger. I met few of my lecturers who sympathized. They were all totally silent with no words. I saw my classroom in the second floor, which equals to 40 steps. The whole experience made me feel that I was in a wrong place and that the college was not an option for me anymore. I resigned to my fate. I did not have the courage to ask the Principal to take me back, nor did the Principal/ lecturers make any efforts to offer me ‘to explore ways by which I could continue in college’. I took the Transfer Certificate and returned home – a sad day indeed. I surely did not deserve this or anticipate this abrupt end from college.

Let us understand that many of these ‘barriers’ are true even to this day.

Long months of loneliness and frustrations made me determined to achieve something in life. I was lucky that I got an opportunity to spend few months visiting an integrated school for both disabled and non-disabled children. This was an awakening experience that made me feel that I was not the only one; there were many more children who were managing well, studying and enjoying life.

I was learning to let go of inhibitions – was willing to ask people for help when needed, experimented and found out different ways of negotiating barriers. I learnt to convey my needs at home and we eventually moved to a house in the ground floor.

I learnt basics computer skills from books borrowed from friends. This opened up employment opportunity in a rural development project located in a remote, drought prone village in North Karnataka. My first experience of independent living; life in a village; living under a thatched roof along with numerous insets and endless power cuts.

The advantages here was the ‘work-space’ and the ‘living-quarter’ were within a short distance, there were no need to depend on bus/ auto, no steps and most importantly the organization was willing to and made appropriate modifications in my living quarter, toilet and at the work place which helped me to live independently .

After my 10 years stint with the rural development project, I moved back to Bangalore due to the needs of my child's education. This also provided an opportunity to complete my degree in Sociology from Indira Gandhi Open University. However, I could not attend any of the week-end coaching classes at the study centre as the classes were in the basement. Similarly we had to submit our assignment once ever quarter and I had to depend on someone to accompany me as the office was in the 3rd floor. I was always scared if the person submitting my assignment would give it to the right person, get proper acknowledgement with signature and seal. I could not read the notices posted in the office again due to the same reason. The exams were conducted in the 3rd floor and I was sitting separately in the Electrical Lab in the ground floor, which could be reached after climbing 10 steps. There was no access to the toilets and I had to be 'innovative' in finding appropriate alternatives.

19 years later, I am still walking at the same speed as I did 2-years after my illness, but there is a big difference to ‘what it was’ and what I am today. Thanks to my family and friends, my wife who has been a source of inspiration and support. I am earning, supporting a family and lobbying for ‘removing the barriers’ that prevent persons with disabilities to participate in society.

Due to the physical barriers, I cannot go to a temple because of the number of steps and because of the unwritten rule/ thinking that ‘tyres’ of the wheelchair are ‘impure’ – therefore they cannot be used inside the temple.

I cannot accompany my child to visit museums and other places of interest, I would love to go swimming too, there are no hotels or lodge that is wheelchair-accessible and within my budget, there is no access to economical public transport. There is no information available in any city/ state of the list of places that a ‘disabled friendly’.

How do persons using wheelchair go inside the salon or sit on the chair for a hair-cut? Enter the studio for a passport photograph? Get their teeth examined by a dentist? Access the narrow-room for getting their vision tested or transfer to the special seat for a ‘computerized’ eye check-up? Go to shop for choosing the clothes of your choice, use a ‘trial room’ before finalizing the purchase. Get a ‘mammography’ done? Dine with everyone else during weddings but the dining hall is in the basement or in the first floor and there is no access to a lift. These are some more examples in the way the world is designed and the only way to overcome is to be physically lifted/ transferred. What if you use a catheter to drain your bladder, there could accidental leakage during such transfers. All of these deny access to the basic services and prevent the active participation of persons with disabilities in our society as equals.

Getting a driving license:

Although I have a certificate issued by the medical board of the Govt. hospital that I am fit to drive a modified 4-wheeler, and having proved that I can safely and independently drive the ‘hand-operated’ car for the last 6-months on a learner’s license, the authorities at the Regional Transport Authorities ‘do not want to take the risk’ of issuing me a permanent license. This conclusions is not based on my driving skills but because I use a pair of crutches while walking. The authorities may be thinking that ‘how can a person drive a car with a pair of crutches’ but ‘while driving one is sitting and does not need crutches!!’

Travel by air:

Whenever I am traveling by air, the airline staff faithfully follows the ‘flight regulations’ and asks the person next to me/ the person accompanying me ‘What is the problem with him?’. ‘Is it because I use a wheelchair?’ ‘Why can’t they ask me?’ The perception is that persons with disabilities are ‘forever dependent’ and ‘somebody more powerful (parent/ guardian/ other ‘good’ souls) have to decide on their behalf’.

Some of the airline staff insists that I sign on a ‘Medical Passenger’ form – saying that they are not liable for any thing that could possibly happen to me during the journey. “Aren’t the airline company equally responsible for the safety of all their passengers?” “In my opinion every passenger should sign on the ‘Medical Passenger’ form. I have to always argue with the ground staff that I am not on any medication nor am I on any medical treatment, therefore I do not fall in the category of a ‘Medical Passenger’ and many times I have been victorious in convincing them.

The risk to the airline company is not because I am on a wheelchair but in reality they want to protect themselves from any damages or claims “if and when their ‘loaders’ drop me” while they physically lift me on my wheelchair to the airplane from the tarmac or while they are getting me off from the airplane.

Why doesn’t the airline company have an ‘ambu-lift’ which is a safe and dignified way of getting passengers on wheelchair on board?

Although in recent times passengers use the aerobridge as this avoids the use of steps totally, but persons on wheelchair cannot use this facility, it is because – ‘due to safety reason’, passengers on wheelchairs are allotted the last row of seats. It is a long way to the last row from the front entrance using an aerobridge and most importantly the aisle wheelchair that the airline company provide for the transfer may not pass through the narrow passage to reach the allotted last row. So who is to be blamed for this creating all this confusion?

Travel by rail:

At the Railway station, one has to surrender his/ her ticket to the station master for using the wheelchair provided at the railway station. The person accompanying me has to push me up to my compartment, get me inside the coach and run back to return the wheelchair and collect our tickets. As there are no access to sub-ways one has to push the wheelchair from the ‘stations master’s office’ which is usually in the middle of the main railway platform to the end of the same platform, cross the railway tracks to reach the appropriate platform – push till the allocated coach, do all these in the reverse to reach the station master’s office to return the wheelchair and get back your tickets. The person who is escorting me has to be physically and mentally fit to endure all these tension. An added spice to life is almost always the front two-small wheels of the wheelchair would invariably be broken or missing so the ‘escort’ needs the skill to balance by tilting and pushing the wheelchair on the big-rear wheels. The platforms are uneven or broken and usually when you reach the end of a platform the big luggage from the brake-van would be strewn all over – all these would make the obstacle course complete, exciting and one has to finish this race in record time. When systems/ rules are introduced to benefit persons with disabilities what measures are in place to ensure the opinions and feedbacks of persons with disabilities are taken seriously.

Getting a ‘medical certificate’ and a ‘disability identity card’:

Due to the complicated and cumbersome procedures and practices, a majority of persons with disabilities do not have a ‘medical certificate’ and a ‘disability identity card’. Both of which are the primary documents that has to produced to the schools, to access any Government welfare programmes/ schemes, income tax department, banks, insurance company the list of places where it is required is endless.

Some of the prevailing practices, to get the above certificates; the person with disability has to report between 8.30 to 9.00am on 3 days a week in specified Government hospitals. Only 20 persons would be registered in a day. After the ‘medical examination’ by the doctor, the person or their guardian has to come after 3-4 days for the ‘medical certificate’ as the same will have to be countersigned by 2 other doctors who form the medical board.

For the ‘disability identity card’, after the doctors signs and affixing the seal of the Government hospital, the document has to be countersigned and sealed by the authorities of the ‘Social Welfare Department’ that is located in a different place.

With no access to a public/ affordable transport, how many have the physical and financial capacity to run around from one place to another to get this primary document? Added to this the ‘medical board’ has not been constituted in many of the districts and one has to travel to a neighboring district for the certificates.

To conclude:

Most of the ‘barriers’ are in the way we think and understand ‘disability’ and very little to do with what the person cannot do due to their impairment.

The physical barriers like steps, narrow doors to toilets prevent access; persons with visual and hearing impairment face barriers in accessing ‘information and communication’. Many of which violates the ‘Rights to Privacy’ of a person with disability.

Creating ‘barrier-free’ spaces is considered as extra cost and not as a necessity that will create an enabling environment for all.

Barriers are posed by institutions such schools/ colleges as they have not implemented provisions to create/provide a level playing field for all. Thereby many have been denied opportunities to complete their education. Employers continue to think that employing persons with disabilities is a liability therefore many are without income to support themselves or their families.

Addressing the issues of persons with disability as a ‘Human Rights’ issue would in many ways help in clarifying our thoughts and putting things in perspective towards creating a world where everyone can live life with grace and dignity.

C. Mahesh
I have posted my articles on issues around 'Persons with Disabilities' which I hope you find both interesting and useful.
**Click on this link to read my articles**
I believe that everyone has the right to 'live life to the fullest'.
Come let us join together in creating a society where everyone can live with grace and dignity.
You can contact me at: mailto:mahesh.chandrasekar@gmai.com or mahesh_mobility@yahoo.com

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