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:
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”.
Panel Discussion 2: Overcoming Barriers to Social Change
Moderator: Ms. Tulika Das, Secretary, Sanchar
Keynote Speaker: Mrs. Reena Bhandari, Project Director, Voice and Vision
(Supported by Hilton/Perkins Program of Perkins School for the Blind, USA)
Daring to Dream
As families, what dreams and aspirations do we have for our children?
We dream of a life for them where they can achieve their highest potential, have choices, and lead a fulfilled life. We hope that they will exercise their rights as individuals and fulfill their obligations in the community that they live in. As parents of a child with disability, can we have the same dreams for our child? Can we aspire that our child will find her/his strengths, and have opportunities to lead a life of dignity and independence, and be a contributing member of her/his community? Can we dare to dream so??
We are fortunate to live in present times where there is a worldwide movement for
people with disabilities. Who better than families and people with disabilities as stakeholders to bring about change??
Some ways we can do so..
Let us be aware of the legislation in place
Use government redressal mechanisms
Have a face and be visible – use the media to exert pressure
Network with other disability groups
Ensure representation in Government committees, consultative groups.
People with disabilities, their families, and voluntary organizations are very powerful agents of change.
Let us be proactive and ensure that we use our potential power to bring about positive change in the lives of people with disabilities.
Snigdha Sarkar, Secy. Anwesha
Social Change through Legislation
Social consciousness and legislation complement each other. Social change is a general term that refers to change in the nature, the social institutions, the social behavior or the social relations of a society or community of people. It is an act of /advocacy for the cause of changing society in a positive way. Legislation or statutory law is law, which has been promulgated or enacted by a legislature or other governing body. The term may refer to a single law, or the collective body of enacted law, while "statute" is also used to refer to a single law. Before an item of legislation becomes law it may be known as a bill, which is typically also known as "legislation" while it remains under active consideration. Social consciousness is the root to legislation and legislation secures and establishes the rights of the people.
The most significant impact that recent legislations for disability have made in the lives of persons with disabilities in our country is that they have triggered a paradigm shift in the approach towards disability. The medical, clinical and charity model is being forced to shift to a right based, development and social model. This shift has brought dignity to the lives of disabled people.
· Existing legislation needs to be effectively implemented and resources must be allocated to make sure the qualities of life of life of people with disabilities improve.
· The amendments that have been suggested to the Act should be tabled and passed in the Parliament.
· Measures should be taken for uniform implementation of the Acts through out the country.
· Disability should become an integral part of all national policies. For instance, special education should be part of the Ministry of Human Resources Development (Department of Education) and not part of the Ministry of Welfare.
· Policies to promote greater participation, representation and involvement of disabled people in the decision and policy-making bodies as also in the political process need to be lobbied and advocated for.
Noney Khullar, Principal, AKSHAR
Inclusion ….a right not a privilege
We are an Inclusive I.C.S.E. affiliated school. Each class has a maximum of 24 students of which 3 to 4 are those with special needs. Students with varying disabilities find their place in AKSHAR - such as those with Down’s Syndrome, autism, cerebral palsy, mild hearing impairment, dyslexia and others, who have mild to moderate cognitive challenges.
In AKSHAR, we have tried to provide a platform for both regular and special children to wmerge and grow together, contributing to each other’s development. In my eight years of experience, I find that inclusion has resulted in immense gains in comprehension and reading skills, and the overall progress of children with special needs. They interact with regular children and learn new social and communicative skills and over the years, these children continue to surprise us in their achievement in co-curricular activities, which we have included in plenty. There is something for each child. In our school, a child with autism plays the tabla in all our shows. An Inter-School Martial Art Tournament has had 2 children with Down Syndrome participating. Having competent role models allows them to learn new adaptive skills and learn through imitation.
The benefits of an Inclusive School have not only been confined to those children with special needs but also for the regular children. Children without disabilities learn from the ‘lesser able’ and observe how they strive to achieve their goals despite limitations. When we started AKSHAR, I wondered whether parents of regular children would choose to send their children to our Inclusive School. Today, I feel that they are part of the catalyst for change.
Ajin Sen, Technical Adviser, Parivaar
Attitude changes society
When we talk about ‘Barriers’ and ‘Attitude’ in the context of disability, I feel it is just two sides of the same coin and one is inextricably related to the other.
In every situation we are facing:
n an attitude of apathy,
n an attitude of ‘taking for granted’,
n an attitude of ‘how does it matter any way’
n an attitude of ‘what do parents understand’
n an attitude of despair burdened with stigma and
n an attitude to quest for personal / individual prominence put before the cause.
To me, the term ‘Barrier’ seems to have two dimensions. One consists of the visible (physical) barriers and the other, the non-visible (ethical) barriers. Both types of barriers in the society contribute equally in creating hindrances for the all-round positive development of persons with disability, denying their constitutional rights and not allowing them to live like equal citizens of India. Thus, it calls for:
a) The total change of attitudes of the concerned individuals, the parents, the professionals, the establishments, Government
b) The commitment from society as a whole to provide a barrier-free environment
This can be done by clear policy statements and sensitization and public information and educational programmes.
I feel if we really want to succeed in changing attitudes, we need to have strong determination, creative solutions, innovative strategies, the will of wanting the ‘best’ for the disable’, willingness to face and overcome stigmatizing situations, ability to put aside personal fulfillment of one’s own needs to take care of more critical basic needs of others. This is by no means the last word on changing attitudes and creating a barrier free society. We are sure that there are many more initiatives that have a lot to contribute. Please let us do whatever is needed to remove barriers and change attitudes.