Sometime last year, two moms dropped into the SHEROES office, filled with enthusiasm and excitement. They wanted their own space on the SHEROES platform where mothers of children with disabilities and additional needs, could come together and support each other.
“The emotional load for every mom is high, but for moms of children with additional needs, it is even higher. We tend to do more of the heavy lifting and want our own online space to just be and support each other,” is what they articulated in our conversation. Some beautiful things have transpired on the platform, since.
1. A group of determined moms got together and started their own community, their own “me space” for mothers of kids of disabilities. There is such a dearth of information and empathy around disability that parents are in a state of panic as soon as they discover something is different about their child.
Being a SODA (sibling of a deaf adult) myself, I’ve seen this playing out first hand. Having a safe space where you can reach out with any concern, can come as a big relief for moms in a world where judgement runs so high.
2. Moms whose children are grown up began sharing their experiences in great detail. Neerja Khurana, mother of 24-year old Vinayana, who lives with cerebral palsy, has poured her heart out in a series of posts within the community. These notes have triggered candid discussions on the “inner” world of moms. They have also encouraged moms who have newly discovered a disability to embrace this journey with courage.
Recently, a mom from Bangalore shared in great detail her journey of discovering that her child is dyslexic, how she coped, and the next steps—her post was emotive and educational for moms in general, creating awareness and empathy. Needless to say it went viral.
3. Another behaviour I absolutely love is moms sharing pictures of their little ones. The world of disability has been shrouded with so much invisibility, with children being kept “hidden” away in their homes. The simple act of sharing a picture, triggers instant likes, comments and reposts, leading to conversations where a mom open up about her little one. A smile is an instant icebreaker. Going a step further, celebrating milestones has also become part of the culture.
Vinamrata Bhatia, a 40-something mom from Pune, regularly posts little nuggets on her son who is autistic, and has broken several zig-zag skating records. “My son is not a diagnosis, he’s my pride,” she emphasises. Her posts have encouraged more moms to celebrate milestones, big or small. A dyslexic little girl reading her first words. An autistic child’s first social gathering where he enjoyed himself. A deaf child’s first words in sign language.
4. The emergence of powerful allies is another beautiful trend. Aman Kumari, a special educator living in Amritsar, posts happy nuggets around her students and their activities. She recently shared how one of her students came home with accolades in the Abu Dhabi Special Olympics 2019, and that sparked a little online celebration.
Another wonderful ally is the woman whose bestie has a child with a disability; Nandita Singh, a stay-at-home mom based in Bangalore has experienced this world, up close and personal, and has been quite vocal in her support.
Yet, another valuable ally are young girls, and grown women and mothers with disabilities. They bring with them lived experiences, empathy and a practical understanding of both difficulties and aspirations. “Request you to use the word specially-abled and not disabilities,” is a common suggestion by non-disabled women on the platform. The very usage of the word disability is considered a slur by some.
Abha Khetarpal, an educator, activist and a wheelchair user, patiently responds in ways that destigmatise the word “disability”; she articulately busts myths with love! Additionally, the presence of experts like psychologists, doctors and physiotherapists on the platform, also adds much value, gently boosting the levels of hope and aspiration in moms.
5. Some moms seek counselling. While more and more moms are opening up and candidly sharing their stories, not all are comfy with being so open, all the time. Some seek a listening ear, sometimes just a venting space. Nisha (name changed), a mom living in Delhi has a tough decision to make. Should she relocate along with her spouse to a place offering poor facilities for her son? Or should she stay back in her current location, which would be more beneficial for her son’s development, which involved single parenting to a large extent? After multiple conversations with counsellors on the Ask SHEROES chat helpline, she was able to make a well-informed decision that instilled confidence in her.
There are several other difficult issues moms have to navigate—from dealing with stigmas and societal judgements to facing their own fears and getting prepared for the battle for equal access. More and more moms are becoming comfortable with the idea of seeking counselling.
6. Moms have a need for expression and conversations that go beyond parenting. There’s self-care, unwinding, fashion, creative expression and various interests that are also part of our identity. Vinamrata was looking for a space where she could connect with other moms, but also explore her own passion for the arts and crafts by sharing her creative experiments online. She has been able to explore this dimension of herself, make friends, exchange thoughts and ideas, and invest in herself by joining multiple communities in line with her interests, participating in interactive chats and other fun activities.
Moms from within the disabilities community often face a sense of marginalisation, especially in India. Non-judgemental online spaces where women with different needs come together, can help address some of the issues we grapple with in our solo journeys. Our segregated education system may give rise to gaps in our understanding of disability, but safe, high empathy platforms create a space for us to come together and desegregate.
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