Shakti: Parents as Advocates

In celebration of IICP’s 32nd Founders Day on 18 November, this Seminar on Parent Empowerment was held. It acknowledged the potential power – Shakti – of parents and the noteworthy role played by parents in the development of the organization. All invited speakers are parents of a child or adult with disability. The seminar was structured around an inaugural session and two panel discussions. We bring you a brief account of the proceedings and excerpts from the speakers

 

Inaugural Session

The Chief Guest, Mrs. Poonam Natarajan is the Chairperson of National Trust and till recently, the Founder Chairperson of Vidyasagar, formerly, Spastics Society of India, Chennai.

 

Parents as Advocates…Building Trust

The Parent of the child with disability has a very different experience with her child and gains a TOTAL perspective of the child and her needs. Having a child with disability thus changes one’s philosophy of life

Special Parents therefore have a Special role in the world. The mother of the child with disability

is concerned about her child living an independent life and needs support systems from the family, the community, the government…. And a community she trusts. Are we creating just a jungle or a trusting and caring community?

We’re Here to change the rules of the game, where everybody plays, and everybody wins!

Dennis Waitley has said “As we enter the 21st century, innovators and visionaries will replace the predators and intimidators.  Independence will be replaced by interdependence.  The winners will be champions of co-operation rather than tooth-and-claw competition.” 

We are here to build Trust.  Just as the National Trust is…”

 

Panel Discussion 1: Parents as Leaders for Social Change

Moderator: Veena Lakhumalani, Specialist in Child Protection, Cini-Asha (a unit of CINI)

Pix 8837 (l-r) Kalpana Sarkar, Iona Kundu, Veena Lakhumalani, Dilip Khan, Jo Chopra

 

Keynote Speaker: Jo Chopra, Director, Karuna Vihar, Latika Roy Foundation, Dehra Dun

Parents as Leaders for Social Change!

Leadership is a process, a creation. You have to have the ability to:

  • Be in the driver’s seat
  • Slow Down
  • See with new Eyes
  • Get the whole picture
  • Stand in different places
  • Ask the right questions; then listen to the answers
  • Use another’s lens

 

Iona Kundu, Director, Mentaid

Parents as professionals

Training parents leads to:

•         Becoming more focused

•         Finding answers

•         Adopting a systematic approach

•         Learning techniques

•         Increasing their coping strategies

In a study of 157 parents conducted at NIMH imparting knowledge and skills to parents, led to an improvement in communication aspects, skills training & behavior modification in children (Peshwaria, R., 1994)

So let us bridge the gap between professionals and parents by thinking about parents who are professionals too!

 

Mr. Dilip Kumar Khan, Member, Sahay Parent Support Group

Parent Support Groups

Sahay is the association of parents with children who are challenged by cerebral palsy. It would not be out of place to resonate the feelings of the parents of ‘Sahay’ when I say that parenting a child with handicaps leads to a variety of stresses. Eventually, it is not an easy responsibility. By interacting in large numbers on the platform of Sahay, the earlier feelings of disenchantment, extreme isolation and loneliness started giving way to some sense of bonding and belonging. It also started helping in realizing our potential and our children’s too, and identify other resources – physical, emotional, material – and hope for the future.

 

The various reasons for bringing parents together include:

§         Non-existence of services

§         Dissatisfaction with services

§         Mismatch between need and provision

§         Trying to find solutions to the major concern – what will happen after parents are no more?

§         Implementing legislation and dealing with social ignorance

§         Meeting own emotional needs

§         Exchanging information and awareness

§         Providing as platform for utilizing leadership qualities and team building

§         Helping NGOs

§         Creating a platform for their voices to be hear by lawmaking and implementing authorities

§         To persuade the Govt. departments and corporates to include the ‘challenged’

§         To allow them to live with dignity by providing employment

§         Promote the involvement of siblings

 

 

Mrs. Kalpana Sarkar, Principal, Prerana Educational Centre

A project of North Bengal Council for the Disabled, Siliguri)

Parental Coping Strategy

 I do not think anyone is capable of teaching the process of coping but as parents who are professionals we can share our views. I would like to divide coping strategies in three categories – emotional adjustment for the parents and immediate family, social adjustment in trying to cope with society; physical adjustment in terms of professional advice about mobility and other aids and appliances, adaptations in the home environment for easier handling, a barrier free environment in the community; financial adjustment is very very important for coping.

 

I would like to suggest that to cope with different situations, we need not aim at ‘unique solutions’ – sometimes we may do the most common things bit in different ways and that makes all the difference. I conclude by saying that knowledge, honesty and dedication are what makes one powerful and by quoting Tagore, “I do not pray that thou protect me from trouble, but that thou makes me fearless when I face my troubles”.