All about Inking a Truly Inclusive Narrative for Children with Disabilities

ICONIC WOMEN OF NORTHEAST

Mainstreaming people with disabilities was and still continues to be hence very challenging. People and society at large has a rampant tendency to view these individuals only within the confines of the medical labels that define their disability. The realisation is not there that there is so much more to each individual beyond the disability. In the year 2000 Shishu Sarothi was rechristened to Shishu Sarothi Centre for Rehabilitation and Training and this was essentially done to deflect to a non-labeled approach towards individuals with disabilities. However, although terminologies have changed not much has changed at the ground level even today

When Saturday Fare contacted Ketaki Bardalai, executive director of Sishu Sarothi for an interview, the lady very pleasantly stated that she is hardly iconic. One then realises that her candour and forthright ways, along with her work (steeped in profound insights and empathy) is what qualifies her so aptly for this space. Despite her candid admission, she consented to share her professional journey and observations pertaining to rehabilitation and training of children and young adolescents.

"Although I am formally at the helm of affairs at Shishu Sarothi since October 2018 I have engaged with this noble organisation since its inception in 1987," she states and shares, " In the early days, the founder Mira Kagti largely ran Shishu Sarothi with the aid of a small team of volunteers and friends. The struggles that time were different as there was no accurate understanding in society about disability. The organisation entailed a considerable amount of correspondence and secretarial work and therefore I largely extended help in an administrative capacity."

Ketaki who was born in Mumbai (erstwhile Bombay) to an Indian Naval Officer has a very cosmopolitan outlook and that has also positively impacted her ability to view ground level realties from multiple yet very cohesive perspectives.

"My father eventually opted for premature retirement and embarked on a professional stint in the public sector. However, while he was in the Navy I studied in Kendriya Vidyalayas across the country subject to his postings. Finally I was sent to a boarding school in Himachal Pradesh- The Lawrence School Sanawar and completed my high school from there. Thereafter I pursued college education from Miranda House in Delhi. By that time my parents had relocated to Kolkata and I started my first job in an advertising agency in Kolkata," she recalls and adds, "While working in Kolkata I met my husband Basant. I got married in 1981 and shifted to Guwahati and have been largely here ever since."

Ketaki had started her professional stint in the city with Guwahati Management Association and had worked there for nearly a year and a half. "Around that time my husband who was working with Hindustan Computers Limited had given up his job as he consciously wanted to start something of his own. So we along with two of our friends, Nripen Dutta Baruah and Ranjit Chowdhury had started an advertising agency that was largely into sales and marketing. It was around this time that I came into contact with Shishu Sarothi and Mira Kagkti," she recounts.

For almost three decades till she took charge as the executive director, Ketaki has been part of Shishu Sarothi in an informal capacity. Her engagement and contributions have been instrumental in defining the current focus of its work.

"While doing their administrative paper work (in the early years) I got oriented with the myriad and complex realties in which the lives of people with disabilities are actually mired. Mainstreaming people with disabilities was and still continues to be hence very challenging. People and society at large has a rampant tendency to view these individuals only within the confines of the medical labels that define their disability. The realisation is not there that there is so much more to each individual beyond the disability. In the year 2000 Shishu Sarothi was rechristened to Shishu Sarothi Centre for Rehabilitation and Training and this was essentially done to deflect to a non-labeled approach towards individuals with disabilities. However, although terminologies have changed not much has changed at the ground level even today," Ketaki explains.

In the initial years after its inception, Shishu Sarothi largely functioned as a day care facility that provided support in terms of learning and activities. The services were rendered to communities in and around Guwahati. "Getting it to its current scale and stature was a collective effort of the founder and all of us who were actively engaged with the operations and upkeep of the organisation. It also entailed support from the external stakeholders and government who was forthcoming by way of a land grant. As is usual with all organisations that engage in social work, funds were always a challenge and I was often involved in the arduous task of garnering funds. Infact I was handling a flagship fund raiser show in 1995 exactly two years before Shishu Sarothi shifted to its permanent premise (that was painstakingly erected in phases) in Birubari," says Ketaki.

Ketaki has also anchored discussions and public discourses (which had participation from Activists, Advocacy groups and NGOs) on various subjects that fall in the spectrum of physical, mental and even intellectual disability. For a few years in early 2000 she had been living in Delhi where she worked in association with the Spastic Society of Northern India and Action for Ability Development and Inclusion (AADI). It was during this time that she had a closer brush with legislation and advocacy.

Prior to her formal appointment at Shishu Sarothi in 2018 she had worked with Foundation for Social Transformation wherein she got a macro and micro understanding of the larger dynamics of development issues and could fathom the pressing relevance of outreach programmes.

Today at Shishu Sarothi, Ketaki admits that she is still contending with the stone wall of apathy that exists (beneath the apparent sheen of acceptance) for children (and older people) with disabilities. "Today unlike earlier there is not much discrimination. However, there is rampant neglect. The help system is simply pathetic. There is no entrenched ecosystem through which people and children with disabilities can easily and promptly avail support. In other words there is no concentrated effort to create an inclusive society. People who talk about support in this domain largely and very fallaciously refer to charity oriented support."

Ketaki rues that most children with disabilities are lumped into the home system of education. "At Shishu Sarothi I have tried to defy this by introducing and implementing the universal design of learning. We also let very young children who have disabilities learn and interact with the ones who do not have any disabilities. The observations are very heartening as both the groups end up learning something from the other. We constantly have workshops on universal design of learning along with a host of learning and extracurricular activities that envisage harnessing the unique innate potential of every child," says Ketaki and sums, " Doctors, educators, social workers like ASHA workers also need to change their approach from a charity based one and hence we routinely undertake awareness building programmes for different stakeholders."

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