Interview

Volume 4 Issue 2 - January 15, 2006

Paradigm shift from the medical model to the rights model has not been taken seriously: Natarajan

The paradigm shift in the disability sector from the medical model to a development and rights based model has not been taken seriously, especially when it concerns people with mental and multiple disabilities, says National Trust Chairperson Poonam Natarajan in conversation with Parvinder Singh.

1. Please tell us about your engagement with the issue of disability, particularly with mental and multiple disabilities.

Well, I have been living, breathing, working, thinking and dreaming of disability for the last 26 years. Actually, since my son Ishwar was born in 1979. In the beginning it was a journey of understanding disability, and then training in the field from Spastics Society of India (S.S.I.), Mumbai. I switched careers from research and academics to special education and disability issues. Initially, I worked at A.D.D.I.. (then known as the Spastic Society of Northern India). I was part of the team that set up the rural project at Dayalpur with A.I.I.M.S., and later I worked both in the Day Centre and the Home Management. Once I shifted to Chennai in 1984, I was keen to set up a parent-to-parent support group, and parent’s training services. We started with this, but were soon flooded with students and families. All the programmes we set up at Vidya Sagar have been because of the individual needs of many children with neurological impairments.

It has been an exciting journey, setting up services for Family Based Work, Community Based Work, Day Centre, and later in the areas of Training and Advocacy. Vidya Sagar (formerly the Spastic Society of India, Chennai) has touched the lives of thousands of children and their families, and each one has taught us how to go forward. Today, we network with mainstream schools and work on Advocacy. Our Day Centre has also been very proactive in working towards mainstreaming.

Today, perhaps we are the only “special school” with an alumni of students, who are in college and employed in several exciting professions. My work with mental and multiple disabilities has taught me many things. The most important of these are: It is crucial to enable and empower the family. The only way forward is inclusive education and community living. The major oppression is the social isolation of the disabled people and their families. The misunderstanding that disabled people are not capable of much, has also led to many regressive attitudes.

2. Your appoint as the Chairperson of National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities has been widely welcomed by disability sector at large. How do you react to it?

It is an overwhelming and heart warming welcome. I am very excited about this new challenge as well, but of course, quite worried whether I will really be able to make the much-needed difference.

3. Please share with us your immediate plan for improving on the focus and functioning of the Trust.

The former Chairperson, Aloka Guha, has set up the basic structure and several programmes in the National Trust. I will of course, like to take these forward. However, my main focus at the moment will also be to set up several consultative meetings and committees to develop an effective and transparent strategic plan. I think, the road map of the National Trust must have many strategies which empower the disabled people with mental and multiple disabilities towards employment and community living.

4. Do you feel that the issue of mental disabilities has been sidelined by our policy makers and also to an extent by the disability sector? Are we lacking in unity within the disability sector?

To some extent, perhaps it has not been given enough importance. But, more than that, I feel that the paradigm shift in the disability sector from the medical model to a development and rights based model has not been taken seriously, when it concerns people with mental and multiple disabilities. They are still people whose lives are controlled by doctors and other medical professionals. My attempt will be to try hard to change that. Of course, the main problem of the disability sector has been that each disability is only willing to think within its own parameters. This lack of unity has led to lopsided concessions and benefits. A convergence and unity in the disability sector will be very welcome, and I think can be the only way forward.

5. India’s state education system is posed for major strides in the field of inclusive education with significant developments in past one year or so. Do you feel there is need for an inward debate on the status of special education for severely disabled?

Definitely, an inward debate in the disability sector is the crucial need of the hour. Most times, we find our own sector not agreeing on the important and urgent need of “all” disabled children being mainstreamed. The severely disabled are mostly people with mental and multiple disabilities. Professionals, parents and policy makers somehow still want to marginalize them.

6. As a veteran of India’s disability movement, do you feel that there has been a perceptible shift towards the rights based approach? What are the breakthroughs needed for taking the movement to the consolidation phase?

There has been a shift to the rights based approach. However, to my mind the consolidation phase is many years or decades away. This is because the breakthrough we need are many:

I) The disability sector has to come together

II) The professionals have to understand their role and where to let go

III) People’s understanding has to change

IV) Policy makers have to understand the paradigm shift.

7. Is there any message that you would like to extend to D.N.I.S. readers?

I would first of all like to thank you for the warm and wonderful welcome. D.N.I.S. readers must realise the power they have, in terms of the voice they can raise. They must think and write about their challenges and give suggestions on what changes they want. Personally for me, as I will be engaged in making a road map for the future, I would welcome all comments and suggestions. I would like to wish D.N.I.S. readers A Very Happy New Year and Coming Together. It is only if all of us put our heads together that we can achieve our dreams and aspirations.