Today’s post is by our guest writer Vedalakshmi Venkatesh. She currently volunteers in education of children and young adults with intellectual disabilities. She also works with caregivers to support their psychological and emotional needs.
In this post, she beautifully describes how through a little kindness and compassion a truly inclusive environment can be built.
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Its the occasion of the International Day for Persons with Disability this year, presenting me with an opportunity to reflect on changes that have taken place, in this space, since we did this blog hop last year.
The brightest spot is the performance of the Indian athletes in the World Paralympics Competition – it’s been an inspiring and outstanding performance. That performance didn’t come overnight, and goes to show that ground-level changes have been taking place over the last several years, slowly but surely.
While it’s fantastic to see these stellar performances, I would like to focus on the lives of those (with disabilities) who are just regular individuals like you and me. These individuals also have a right to be included in our society – go out to eat, visit parks, get invited for tea, go for walks in the neighbourhood, and do all the activities that able-bodied people take for granted. In other words, inclusion of the average neurodivergent individual (and their family) in daily life as part of a majority neurotypical community is what I am driving at.
Our society (at least in urban centres like Bangalore) has progressed to the point where someone with a physical disability is not looked at with fearful looks, or looked-down upon in other ways in public. However, those with intellectual disabilities such as autism, Down’s Syndrome, cerebral palsy, mental illnesses (schizophrenia) etc, look and behave very differently from neurotypical individuals in daily interactions. When an uninformed neurotypical able-bodied individual meets a person with autism, in a common elevator for example, what are the emotions triggered in the mind of that neurotypical person?
The first and foremost emotion is that of fear – fear of the unknown and unfamiliar. This fear leads to avoidance and these uninformed individuals may make adverse comments or tell their family members to “stay away from” the neurodivergent individual. They may find the behaviour of the neurodivergent person inexplicable or even weird and therefore attribute that to incompetent parenting and pass comments denigrating the parents.
This is non-inclusion at its cruellest. It is deeply hurtful to the neurodivergent individual and the parents. Given that the parents are already dealing with the emotional, financial and physical implications of having a child with intellectual disabilities, this sort of attitude from the neighbourhood is a double-whammy.
Lest someone think this is a thought-experiment, let me iterate that this was an actual occurrence in my immediate neighbourhood.
How do we go about rectifying this process? Loud declamations about “ignorant and cruel neighbours” will only make for a further distance between neurotypical and neurodivergent individuals. We need to foster understanding and empathy for which the most important need is awareness. Creating awareness in our neighbours means that we need to be open about the challenges and nature of disability in our child. Unless we fully accept our neurodivergent child (though an adult) and feel proud of who s/he is, how can we expect others to?
But this is not an easy task – each of us wants our child to be like other children. One crucial source of strength is to band together with other parents of neurodivergent children/adults. Working as a special educator, I have come to realise that the parents (of special needs individuals) face challenges that are no less than those faced by the individuals themselves – the challenges are not the same but they can be equally intensive. Informal hyperlocal parent support groups are one way to get together. In my community, we have one such group which meets up informally for tea and snacks at my home. The moms come by themselves and each person talks about her own personal challenges ranging from child care to family tensions. We exchange information about resources – therapists, schools, helpers and anything else relevant. We have another group for the dads which talks about other issues.
While all these meetings, by themselves, provide a lot of support and emotional energy to the mothers and fathers, the most important outcome has been the increased participation of the neurodivergent child / adult in cultural and sports activities within the community. One of our special adults has now become a regular dancer in all community events – this individual gets the maximum applause. Another special child is now a regular walker in the evening along with all the other children who play. Yet another special adult now walks openly in the evenings and talks with some of us in the elevator – even if it is just to say that he is happy. Another special adult participated in a community sports event. All the special adults/children will participate in the community run on the occasion of Republic Day in 2024. Our society WhatsApp group now is aware that there are many special families in our community. The most important part of this awareness is that neurotypical families now realise that neurodivergent individuals and their families have the same social and emotional needs as they do. Most crucially, it reduces the judgmental attitude towards the parents, especially the mother, leading to greater empathy and openness towards including everyone in the normal course of life.
Each of us – neurotypical or otherwise – has to advocate for ourselves, whether it’s about getting admission in a college or getting accepted for a job or asking for a promotion. Let’s all recognise and accept this. A neurodivergent individual is generally less capable of self-advocacy than a neurotypical one. This responsibility therefore falls most often on the parents, who are already dealing with the emotional and practical challenges of raising and living with a neurodivergent child/adult. I believe therefore that the onus is on all of us to make the job of the parents a little bit easier, to whatever extent we can. And we can do this by very simple actions – a smile, an invitation to tea, an offer of support in times of need – made without judgement. We can simply ask what we can do to help – most of the times, just asking is enough to energise the parent who is then able to do what s/he needs to do. In other words, adding a little kindness in our daily interactions with neurodivergent individuals and their families can go a long, long way in making our society much more inclusive and the world a better place.
This post is a part of “International Day of Persons with Disability” blog hop hosted by Sakshi Varma – Tripleamommy. #IDPD2023Bloghop. Access all posts of this blog hop at Championing Diversity, Uniting Voices: Commemorating IDPD Together
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Regards, Sakshi aka tripleamommy
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