AN ORGANISATION THAT’S EMPOWERING LUCKNOW’S AUTISTIC KIDS DESPITE THEIR FUNDING CRISIS
Based on the 2011 census, 1 in 89 Indian kids between the ages of two and nine is diagnosed with Autism Spectrum Disorder. While this statistic might seem just small enough to be crushed by the two highly veinous hands of normality and majority, it still is approximately 2.2 million kids (in the age group) and a whopping 13 million Indians in totality – most of whom spend their days spraying out holy water like its French cologne, making weekly return trips to either the mazaars or the babas with bucketfuls of rewdi and cash, and cleansing out pichhle janm ke alleged paap in the hopes that something or the other might work out. Although all of the aforementioned methodologies reek of ignorance, they seem to be the only way out for the millions who either indulge in them due to sheer desperation or don’t know better (maybe it has to do with the fact that a staggering 46% of India’s differently-abled happen to be illiterate).
So, Inwords decided to meet up with a dynamic woman who is leading the way for creating awareness about Autistic people and their rights in the city— Ms. Bobby Ramani, Founder Director at I Support Foundation, Lucknow.
Photographed by Shubhrali.
We paid her a visit on a fine Monday afternoon.
As my team and I settle down in her office, Ms. Ramani starts to narrate an extraordinary tale of change, empowerment, and unwavering resilience. To my surprise, I learn that Ms. Ramani wasn’t always dedicated to this cause. Instead, she was working with a real estate company in the capacity of an administrative executive but a change of heart – one that felt much like a call for duty – in 2014 resulted in the genesis of the I Support Foundation.
While her professional commitment to the cause is relatively new, her personal attachment to it goes way back. In 1999, her younger brother Shivam came down with typhoid and was struck by a rare but possible consequence of the infection: autism. Hailing from a small town like Rae Bareli, the Ramanis felt helpless at the time.
“I come from a typical Sindhi business family with the mindset that ‘paisa sab theek kar sakta hai.’ Therefore we went to every doctor possible in the hamlet and ultimately ended up being referred to Lucknow,” Ms. Ramani recalls.
The government of India only recognised autism as a disorder in 2001, therefore there wasn’t much specialised medical information and help available at the time – as one can figure out. Ms. Ramani’s brother was first handed the diagnosis of a mentally retarded child – a misdiagnosis for Autism Spectrum Disorders which isn’t as uncommon in India as one would hope. It happens partially due to their high co-morbidity but more so due to the lack of expertise and knowledge.
For a long time, the government of India also categorised people with autism as mentally retarded – a misconception that many hold to this date – but it is to be noted that not all persons with autism are mentally retarded. More importantly to be noted is that this misunderstanding had disastrous consequences which included lack of specialised research and academic grants from the government which could have been dedicated towards gaining a better understanding of ASD and its implications. It was only after attending a plethora of conferences and seminars, were the Ramanis able to get the correct diagnosis and also come to terms with Shivam’s condition.
Eventually, the apprehensiveness of the people around them and the lack of special schools in Rae Bareli induced the family to pack their bags and shift to Lucknow- something that speaks volumes considering that Autism Spectrum Disorder surely isn’t restricted to the upper echelon residing in the towering skyscrapers of mega-metropolises of the country. Conditions such as Autism and Mental Retardation don’t discriminate on the basis of parameters like access to affordable health care and economic background, so take a minute to think of all the additional hardships a destitute Dharavi-dwelling person living with any of the aforementioned conditions must be facing as a part of their daily routine.
As she gives us a short tour of her office, I take notice of the cursive ink on her hand. It reads: ‘I love my bro.’ and that tells me that even though this story is one of activism and social change, it is wrapped in the fabric of genuine love. It was her love for her brother that evoked her to quit her corporate job and pursue a Masters in Social Work while simultaneously laying groundwork for an organisation specially dedicated towards the welfare of kids like her brother. Having witnessed the effects and implications of autism from a front row seat, Ms. Ramani and her sister were well aware that their family wasn’t the only one stranded in this fight against autism and held a firm belief that they could offer help to other disenfranchised young kids undergoing the same problems.
Founded in 2014, ISF is now a registered non-profit Lucknow based organisation with an active branch in Bangalore with the Lucknow chapter being headed by Ms. Bobby Ramani herself. The organisation runs a school for underprivileged differently-abled kids, currently having 50 students on roll. The school not only has all the facilities of a regular school (Academics; Sports; Extra Curricular Activities) but also has provisions like physiotherapy, occupational therapy and speech therapy for their students.
In addition to that, ISF regularly conducts awareness drives and campaigns, the biggest being their drive for transforming restaurants and cafés to make them differently-abled friendly. This initiative aims towards providing a hassle-free experience for these kids and their families at social eateries. “Even kids who don’t live with conditions like Autism tend to get excited when they visit a public place and they want to touch anything and everything. These kids aren’t any different but the intensity of their excitement just goes a little overboard when in a new environment which in turn embarrasses the parents. They mix salt and pepper and spill the sauces on the table. This often ends up in parents completely refraining from taking their kids out,” Ms. Ramani explains.
Having experienced the discomfort from the constant stares and whispers, Ms. Ramani and her team are spearheading a drive that targets this issue – which may seem minor to us – but if resolved will make the lives of these kids and their families a lot more comfortable.
“When we partner with a restaurant, we expect them to serve such kids and their families on a priority basis and also make the staff go through a mandatory sensitivity training in how to identify and cater to differently-abled kids. We provide them with special kits that can be handed out to the kids while they wait for their food so as to keep them busy.” As of now, they have tagged about 25 locations in Lucknow including Homeys Cafe, The Cherry Tree, Mocha and Royal Cafe. “We just need to tag a few more locations to be able to get a ‘Specially-abled Friendly Category’ on Zomato in Lucknow just like ones in Delhi, Bombay etc,” Ms. Ramani proudly grins as she tells me this. She and her team have also launched another initiative called the ‘Raahi Drive’ which aims to encourage the differently-abled kids living in slums of the city to enroll in a public or private school so that at least some level of intellectual and physical growth is maintained.
Unfortunately, the foundation’s groundbreaking work in the city came to a startling halt this year when Ms Ramani had to make the tough call of scaling down the magnitude of their work when the government abruptly cut off all of their funding. Organisations such as ISF received funds from the Disha and Vikaas Scheme under the Ministry of Social Justice and Empowerment of the Central Government, whose budget was reduced by one-fourth without the provision of a prior notice to the affected NGOs. For the sake of the kids, Ms Ramani has decided to drain her own pocket to pay for the expenses of the school as long as she can afford to.
“I’m really concerned about the situation. We have kids here with problems like Muscle Dystrophy, who require daily therapy or their limbs will lose all function. These kids are from the slums and their parents can’t afford therapy. I have paid from my own pocket as long as it has been possible but now we won’t be able to cater to the same number of kids as before – and it upsets me to no extent.”
Currently, she drowns in paperwork as she plans to take the government to court while simultaneously looking for private sponsorships to help the kids in the meanwhile. While there have been quite a few sponsorship pitches that have monetised, they still are not enough to restore the school to its original potential.
Although Ms Ramani has proved to be the calm in the centre of the storm, handling the obstacles in her path with the utmost grace, she does admit that having a few more helping hands around wouldn’t hurt. Due to the recent monetary setback, the foundation has had to let many of their paid-staff go which has not only been tough on the kids but also has created administrative snags. To overcome this sudden setback, the I Support Foundation is actively looking for volunteers of all ages who can help them in tagging new locations for their ‘Differently-abled friendly’ drive and also facilitate the advancement of their nascent Raahi Drive. Following are their contact details:
Email: [email protected]
Mobile Number- +919889121939