The Invisible Women

When I met Sunitha* in 2012, she was sad, with suicidal thoughts. She had centered her life around her child who had a severe disability and she was made to believe she was responsible for the state of her child, and the child was her responsibility, and so she had to push herself more and try harder, to make her child “normal”. It took 8 long years of constant support and counselling for her to accept the child without wanting to normalize things, to accept help from others, and to let go of the things that couldn’t be changed. Sadly, she is not alone in this situation and from my experience I can say this is the story of the majority of women who function as informal caregivers for their children with disabilities.

For those of us working in the disability sector, this is a common experience. It is a documented fact that intersection of gender and disability can be lethal and women with disability have worse outcomes. In all of our efforts, we tend to highlight how disability has a different impact on women and girls. However, missing in these dialogues are the other women, the invisible women, who silently care for their children with disabilities. 

Picture Credits Pixabay

There is a vast body of literature on every aspect of motherhood. What I would like to mention is how the situation of mothers becomes even more complicated in the Indian context, made worse by the prevailing gender order. Despite all our efforts, the society refuses to learn about our actual experiences as mothers and to separate the mother from the woman. An ideal of motherhood gets thrust upon us and we are often forced to live up to it. Take this dogmatic view of motherhood and combine it with the twisted and widely held belief that a disability is somehow a defect, and more so the result of something the mother has done during pregnancy, which is often detrimental to the health of a mother caring for her child with a disability.

In my 30 years of working in this sector, I have been  with many women who have children with disabilities. Their resilience is compelling, yet their despair is also heartbreaking. When I sat down and tried to put together all of their challenges and struggles, a common theme emerged: that of blame. The blame placed on her by the society and often by members of her own family for the disability of her child. These women then go on to internalise the blame and toil away their lives to correct it.They are hurt, disappointed, and the feelings of inadequacy are amplified when the world sees their child as different. They refuse to see themselves as individuals and their future is invariably entangled with that of their child’s. Most mothers I meet are repressed and refuse to believe they even deserve to be happy. Their personality vanished and their life a blur. Their road to recovery is a long one, the first step is to make them see themselves as distinct human beings with their own needs and wants. 

It may seem like I have overlooked the other half of parenthood, namely the father. They are as important as the mother when it comes to caring for a child with disabilities but that’s a conversation reserved for another day. On this day for global celebration of women, I would like to bring to the fore the personhood of these women, the silent caregivers. I want to remind them that they do not owe it to the society to exist as saviours, paragons of motherhood, as inspirational stories, as beacons of hope and sacrifice, I want to remind them that they can just simply exist.

*Name Changed

About the Author:

Vaishali Pai – Founder & Director at Tamahar Trust, Malleswaram, Bengaluru

An Occupational Therapist (OT) by profession and a Gold medallist in Bachelor’s and Master’s degree with three decades experience working with big names like Spastics Society of India, Mallya Hospital, Vydehi Institute of Rehabilitation and Align Centre. Vaishali has worked in child and adult rehabilitation in varied situations and facilities throughout her career. As a certified Early Interventionist, she is adept at handling infants and newborns, even as young as 1 week old.  She has served as the Chair of ORDI Organization for Rare Diseases India Care Coordination Committee, member of the Board of B D Tatti Annavaru Memorial Trust of Laxmeshwar, Dist. Gadag, on the board of APD – Association of People with Disability, a 60 year organisation working for disability, and also on the board of Disability NGO Alliance, a consortium of disability NGOs in the state of Karnataka. She is also the Civil Society member of an Ethics Committee of a medical research institute.

Contact:

Manisha Raghunath

Communications Manager – Tamahar Trust

Email: manisha@tamahar.org

Tamahar Trust – Penning Down Our Journey of the Last 11 Years

An idea is a seed that first happens before any action. It took me some years to make my dream come true. And this is exactly how the seed of Tamahar was sown. ~Mrs. Vaishali Pai, Founder-Director, Tamahar Trust

Tamahar Trust-Founder-Director Mrs Vaishali Pai
Our Founder-Director Mrs Vaishali Pai

We completed 11 years this year, in January, just before the pandemic hit the world, we celebrated our 10 years, Dashanjali, a celebration of ten years of hard work, persistence, learning, and a never-give-up attitude. It was also an occasion for us to recognize the relations we’ve built over the years and an opportunity for us to forge new bonds as we grow our Tamahar family. As we have begun our 12th year of working toward a better life for children with special needs and their families, we’re going on a small flashback to our humble beginning.

Our journey began in the year 2009 with just 1 program having 4 children, 1 employee, Tripti BG, and 1 friend, Sree Rao, who was hell-bent to help our Founder-Director, Mrs. Vaishali Pai succeed.

Tamahar Trust programs
Our first employee and now, the COO of Tamahar Trust, Mrs. Tripti BG

From then to now, we’ve grown organically, through word of mouth and referrals. At 45+ employees across programs and operations teams, we stand strong as a family committed to ensuring the best for our children.

A session in progress at Tamahar Trust
A session in progress at Tamahar Trust

A mission to empower as many children with special needs and their families as humanly possible.

Tamahar Trust Staff
Our staff who are our life force

This we do through our strong workforce – a group of almost all-women whom we hired simply because they had in them, the passion to learn and contribute meaningfully while carving a better future for themselves. So, apart from formally qualified professionals especially in physiotherapy, occupational therapy, and mental health spaces, we also employed women who had a high emotional quotient which held an extremely important place for us, over and above their formal educational qualifications. We were also looking for those women who were passionate about creating a better future for themselves and their families, had within them, an immense love for children, and caring nature. This we say with pride, we have managed to skill women who would have otherwise continued to do unskilled jobs and created job opportunities improving the lives of at least 40 families.

We have not restricted our training to just our staff but have ventured into awareness and advocacy programs as well. Mrs. Vaishali Pai and our COO Mrs. Tripti BG have taken the building blocks of the programs at Tamahar to various parts of the state as well as a few programs in other parts of the country. This has helped us train more individuals and organizations in the areas of special needs and disabilities.

Tamahar Trust-Remover of Darkness
Our children’s families are an integral part of our programs at Tamahar

As more children came in, the number of programs increased and we began services for parents as well, recognizing their individual needs separate from their child and the needs of the family to understand the child. In time, we found passionate partners to provide various therapies to our children and parents too. We think the best thing we did with Tamahar was that we never stopped searching for more, for better. We have always strived for excellence, to be the best service provider possible for our beneficiaries, never afraid to take risks, sometimes when we were not sure where the next salaries would come from.

We are proud to say that Tamahar has come to be a nurturer not just for families, but for the employees too. Learning is in our DNA and each one of us is striving to be better in our individual way, and it all boils down to one thing – how can I help my children and parents better? They are at the core and WE are BECAUSE of them and FOR them! The road ahead is filled with more opportunities to make a difference.

After having taken the last year slow for a moment and basking in the warmth and success of the decade gone by, we catch our breath, and right after, we charge ahead, not letting COVID-19 dampen our spirits. There is much to be done. Bridging the demand-supply gap by creating more resources and contributing to the collective knowledge of the sector through research and training, creating more service opportunities.

“There are miles to go before I sleep, there are miles to go before I sleep.”

Know More – https://tamahartrustblog.wordpress.com/2017/03/13/empowered-families-encourage-better-development-in-the-child/