Interview

Volume 2 Issue 13 - July 01, 2004

"The network provides solidarity"

Ketaki Bardelai is the driving force behind the North East (NE) region Disability Law Unit (DLU) and was instrumental in organising a workshop on disability issues for lawyers in Guwahati in July. She is an Honours graduate in Economics and worked in the advertising industry for many years. After marriage she moved from Kolkata to Guwahati where she soon made her presence known, setting up her own marketing and advertising agency. Then, following a project helping out a friend, she was asked to join Shishu Sarothi, where she has worked ever since. She speaks to DNIS about her involvement in the disability sector and her role in the NE region DLU.

You are currently secretary of Shishu Sarothi. How long have you been with the organisation?
My association with Shishu Sarothi was not planned. I strayed into the disability sector and over the years, become deeply involved with and committed to the work.
I was first involved with the organisation in 1988, when I helped with the backroom arrangements for a fundraiser show for the organisation. Ustad Amjad Ali Khan was performing, and I got involved in developing and producing all the publicity material for the event, as the founder chairperson, Brinda Crishna, is a close personal friend of mine. After the fundraiser Brinda asked to me join the organisation and help with the secretarial and admin work of the organisation, which at that point of time seemed a light load to bear!

What does your organisation do?
It runs needs-based services for children with cerebral palsy and associated multiple disabilities. These include the running of a Diagnostic Clinic cum Outdoor Services Department and a parallel Centre for Special Education. At the DC/OSD we counsel families and draw up detailed Home Management Programmes, which are monitored and upgraded over subsequent visits. These programmes cover all aspects of the child’s developmental needs, including physical management, cognitive and early education, daily living skills, language and communication etc.
Over the years we have seen and counselled more than 2000 families, including many children under two years old. Children who live in Guwahati and need intensive special education inputs are taken into the Centre for Special Education, where we offer all round educational inputs along with physiotherapy/speech therapy. Run on the lines of school, this centre caters to between 80 and 100 children each year. Numerous children have also been sent on to mainstream schools.
We also offer parent counselling and have extended our services into training. In this way we can disseminate our experience and knowledge – gathered over the years – across the state and region.
Increasing public awareness about the acute and extraordinary needs of children with cerebral palsy is also an important element of our work. This has evolved into advocacy of disability rights and related issues.

When was the NE region Disability Law Unit formed?
It began in September 2003, as a logical follow up of an initiative taken in March of that year, to conduct a regional workshop on Disability and the Law. The workshop aim was to generate more awareness and interest in the legal arena. It was conducted with funding assistance from ActionAid India and in collaboration with NCPEDP and the Human Rights Law Network.
Our relationship with NCPEDP and Javed Abidi goes back a long way, to his days in Rajiv Gandhi Foundation. Since then we have been closely associated and involved in the various programmes and campaigns that he has spearheaded for the disability sector.
We have participated in his programmes for developing the National Disability Index and a workshop on speedy implementation of the Persons with Disabilities Act 1995. We conducted a programme here in Guwahati with NCPEDP for creation of employment opportunities for disabled people. Additionally we were involved in all his advocacy campaigns etc.

How many members are there in the DLU? What sectors do they come from?
There are no members as such. It is an initiative of Shishu Sarothi, additional to its existing services. Officially

What is your personal role in the network?
There are just two people on the team: Arman and me. Inky Sen has joined Shishu Sarothi recently as an assistant co-ordinator and I am pinning great hope on her legal background to shoulder this project on in the near future. As the Project Coordinator, I am responsible for the activities of the DLU as per the guidelines detailed in the Memorandum of Understanding. These include creating awareness among disabled people about their rights, the need for empowerment and rehabilitation, and educating them on the existing laws

What have been the benefits of belonging to a regional network?
We had over the years developed a good relationship with other disability sector NGOs in the region and belonging to this network has strengthened that relationship. It helps us to keep in touch, share concerns, and be aware of the various activities, programmes and ground realities in the region. Regular contact with the network helps to take up common issues, though we are yet to take up tangible issues together. I hope that the recent workshop will catalyse action on that count.

Do you have any contact with the other DLU regions?
We have occasional contact via email. We all met in July last year in Delhi. Arman also attended the World Social Forum in Mumbai in January 2004, but I do feel that more regular contact would be useful.

Would you recommend organisations that are not yet involved to join the network? What would they gain?
Yes I would recommend others to join. The network provides member organisations with solidarity and support and a forum to help resolve common problems too.

What level of commitment are member organisations asked/required to make?
Empowerment of persons with disability and rights based approach I think. Since most organisations are involved in service delivery, this approach is a little different to what they are used to. Hence organisations will have to see how to converge this with their existing services/programmes.

How much contact do you have with the centre in Delhi?
Contact is regular and ongoing.

What is your experience of law and disability issues?
More awareness, sensitisation is needed among implementers on the one hand and awareness and empowerment among the disabled people on the other. Workshops and programmes like the recent one go a long way in creating this awareness. The momentum has to be kept up.

What is the state of implementation of the Disability Act in your region?
Not exemplary by any standards. The State Government continually needs to be sensitised in a big way. Some awareness has come in the recent past, due to our own efforts and the confrontational approach of the various associations of disabled people. We have to be vigilant to ensure that the rights of persons with disabilities are protected.

How do you expect the NE DLU to grow?
That will happen with the active involvement of all the regional partners (state partners of the NDN). As they take up disability related issues in their own states, growth will surely follow.

What do you consider to the biggest challenge facing disability organisations in India?
One challenge is organisation but we also need to establish a sense of unity across the various disability organisations and groups. Programmes need to be seen to be more professional, and of course, we need to build the capacity of disabled people to lead independent, fulfilled lives.
These are some of the challenges that I can think of, not necessarily in that order though.