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Resource id #4 “Generations have paid and will pay the price of being born disabled in India”: Javed Abidi - Volume 9 Issue 11: Disability News and Information Service for India

Interview

Volume 9 Issue 11 - August 15, 2012

“Generations have paid and will pay the price of being born disabled in India”: Javed Abidi

Javed Abidi has spent 2 decades in the disability sector, pioneering the concept of advocacy and cross-disability. He is the founder and Convenor of Disabled Rights Group (D.R.G.) and Honorary Director of National Centre for Promotion of Employment for Disabled People (N.C.P.E.D.P.). He is also the World Chair of Disabled People’s International, the first Indian and South Asian to be elected to this coveted post. In an e-mail interview with Rajlakshmi Pillai of One India One People, Javed Abidi talks about the challenges faced by people with disabilities in India and the need for creating awareness in society. D.N.I.S. reproduces the interview for its readers.

A recent incident that drew attention to the insensitivity towards people with disabilities was the case of Jeeja Ghosh, suffering from cerebral palsy, who was not allowed to board a flight. Does this kind of discrimination arise due to insensitivity or lack of awareness? How can we sensitise society towards people with disabilities?

Javed Abidi: Jeeja Ghosh is a person with Cerebral Palsy. She does not “suffer” from it! If she “suffers” from anything at all, it is the lack of awareness on the part of the airline and the complete insensitivity on the part of the pilot who decided to deboard her from the aircraft.

Discrimination arises more from the lack of awareness than insensitivity. In fact, if you think about it, it is the lack of awareness that leads to insensitivity.

In this case, it was obvious that the SpiceJet Airlines had not invested in the training and awareness of their staff (from check-in to ground personnel to the airline crew including the pilot) in spite of the C.A.R. (Civil Aviation Requirements) Guidelines issued by Directorate General of Civil Aviation (D.G.C.A.) in 2008.

You have been battling for the rights of people with disabilities for a long time. What are the major problems encountered by the disabled? As an activist how have you been able to highlight the problems and find solutions?

Javed Abidi: The biggest problem encountered by disabled people in India is that they simply are not on the radar screen of the Nation. For 48 years after Independence (until 1995), there was no law to secure their rights. For 54 years after Independence (until 2001), they were not even counted in the Census and so the Nation had no data on disability. Even though these two basics have now been corrected, the damage done was so huge that generations have paid and will pay the price of being born disabled in India. From attaining education to securing a job, to be able to just move around the city and go to normal places like a cinema or a park or a shopping area, it is all one huge challenge for an average disabled Indian.

As an activist, I and my colleagues in N.C.P.E.D.P. (National Centre for Promotion of Employment for Disabled People) and in D.R.G. (Disabled Rights Group) have tried our best to highlight these issues from time to time but I don’t think we have made much of a dent as yet! We still have a long way to go.

Are there enough laws in the country to protect the rights and secure the life of persons with disabilities? Where is the lacunae if any and what needs to be done?

Javed Abidi: No, there are hardly any laws or policies! The 1995 law is old and archaic. We have demanded from the Government a new disability rights legislation but the progress has been painfully slow.

The need of the hour is to mainstream disability. It should be across all Ministries, across all thematic areas, from the usual H.R.D., Health, etc., to Urban Development, Rural Development, Information Technology, Panchayati Raj, Youth and Sports, and so on.

All relevant laws and policies need to be amended to ensure that disabled people are not discriminated in the future and that they are able to enjoy their rights on an equal basis with others.

Today, it is heartening to note that there are many organisations for advocacy studies on disability and they are also working to promote the rights of the disabled. Is enough being done? Is adequate research work happening in India on disability issues?

Javed Abidi: I don’t agree! I don’t think there is enough advocacy or research being done in India. And that’s where I feel quite upset vis. a vis. the so called N.G.O.s that claim to be working for the “cause” of disability. In fact, if you look closely, you will find most of them to be charity ridden and busy doing bad quality service delivery.

I hope that I am not misunderstood when I say that India needs one N.C.P.E.D.P. kind of an organisation in every State capital and in every Union Territory.

You were confined to a wheelchair since you were 15. How difficult it was to adjust to your new life? Did you attend regular school? Can you share with us memories of early childhood, coping up with studies and accepting your condition?

Javed Abidi: I have been a wheelchair user since 1980. My condition was congenital (since birth) but for the first 8 years, I could walk and run. Then, I was on crutches for some years.

I recall distinctly that I made friends with my disability at a very young age and the entire credit for that goes to my parents. They never hid anything from me. My father would sit with me and draw diagrams of my back (spine) to explain the issues to me and the possible challenges ahead.

And, when I acquired disability, they treated me as another normal kid. I continued going to a regular school. I was not stopped from doing by and large anything in the name of protection. Thus, I gained confidence and lived by and large a “normal” life.

Parents of children with disabilities too face a number of challenges in bringing up their children? Very little is being done for their counselling? What needs to be done so that they can accept/cope with the situation in a better way?

Javed Abidi: I can’t deny that disability brings with it many challenges and yes, parents are troubled and even traumatized. Yes, they need counselling and good advice. Unfortunately, not much is available in our country on that front either.

You can “cope” with your own or your child’s disability only if you first accept it. In India, often, for a long time, parents are in denial. They keep running from one doctor to the other and then to mazars and mandirs, etc. and I can’t blame them.

India needs to invest in counselling but India also needs to invest in infrastructure. If and when a parent realises that tough luck my child is disabled but even then, she/he can do as well as another child, as in gain good education, get a decent job, and be able to move around with dignity and comfort, things would be easier for them emotionally also and in real terms also.

How tough or easy is it for disabled people to get employment in India? What are the opportunities abroad? Is there any reservation in place? Will reservations help? N.C.P.E.D.P. has been in the forefront in this regard. Can you recall some success stories/initiatives?

Javed Abidi: Getting employment for disabled people in India is not that easy but it is not that difficult either. The challenge is to be educated and to be skilled. Today’s is a very competitive world. Most of the jobs have moved to the private sector and there is no quota system, no easy way out.

The laws are still very weak and even as we speak, employers discriminate against disabled job seekers with impunity. Having said that, thousands and thousands of disabled people have got jobs over the last 10 years alone. Most of the Chambers like C.I.I., N.A.S.S.C.O.M., etc. now have a disability focus. Awareness is being created and it is a continuous and never ending process.

Whatever we have been able to do at N.C.P.E.D.P. is not even the tip of the proverbial iceberg. We need a tough anti discrimination law, one that would also guarantee reasonable accommodation at the work place.

India is not regarded as a disabled friendly country. In foreign countries, people on wheel chair or using crutches can easily move around independently but in India, such facilities are lacking. What should be done to increase accessibility in public places for disabled?

Javed Abidi: As I said earlier, we need a new law, a strict, rights based disability legislation. It is simple really. Do not construct, design, or procure in a way that discriminates against people with disabilities and not just those who are wheelchair users or crutch users but also those who are blind or deaf or with any other visible or invisible disability.

Today, the civilised world as I call it, is practising what is called “Universal Design”. A design that is friendly and convenient to all people.

Inclusive education is what many activists advocate. It is generally felt studying in a regular school will benefit a child with disabilities than studying in special schools. Do you agree?

Javed Abidi: Of course! Let there be no doubt about that. We firmly and passionately believe in inclusive education. All children, irrespective of their disability, should be able to go to the same school and attain the same education as any other child. Our schools and colleges and universities should be such where a student with disability is able to study with dignity and comfort. And, even in the case of some children where some special or extra attention is required, it should be within the overall so called “normal” setting! So that even if they are not in the same classroom together, at least for all other activities from say music to dance, drama, sports, painting and so on, all children are together and are able to interact and are able to learn from each other’s strengths and weaknesses.

For God’s sake, do not segregate children in the name of disability.

Lack of awareness about different disabilities often gives rise to discrimination/hurt knowingly or unknowingly. What can or should be done to sensitise general public on issues regarding disability?

Javed Abidi: Well, as I have said repeatedly, create more awareness on the issue. More importantly, mainstream disability into all facets of life. Create infrastructure that is disabled friendly. Get thousands and thousands of disabled children into regular schools. Also, remove negative stereotypes.

What is the key for disabled persons to discard ‘dis’ from ‘disability’ so that only ability remains?

Javed Abidi: There is no reason to discard anything. Embrace disability. Accept me as who I am! Your calling me able or special or different will not make me able or special or different!! These are words created by a guilt ridden society. Empty words, which don’t change much. My honest suggestion would be to not play with words but to bring a real change.

Finally, is there any message you would like to give our readers?

Javed Abidi: Disabled people are as much a citizen of this Nation as you are. They have the same rights. Ensure that they are able to get their rights: to be able to go a school or a college; to be able to get a job; to be able to move around in a bus or a train; to go to a cinema or to a park. How difficult is that? Why has India taken this long to wake up to its 70 million disabled citizens? And quite frankly, has it woken up? Search for an answer within yourself, Look around yourself and see if you can change something. Each one of you can be an agent of change. Do something to make India a better place for its disabled citizens.

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