The unsung heroes: 'Invisible disabilities remain overlooked in the domain of public policy,’ shares Autism activist Mugdha Kalra

18 April,2024 11:06 AM IST |  Mumbai  |  Ainie Rizvi

Without a specialised census focused on individuals living with neurodivergence, they`ll never be important enough for the government, shares Mugdha Kalra. An autism activist and mother, she works to tackle systemic issues that impede the progress of neurodivergent children

Obtaining Madhav`s disability certification required 14 sessions spanning over three and a half months

Key Highlights

"Madhi, Badmash bachcha! Come and say hi," hollers the Parel-based mother and autism activist - Mugdha Kalra at her son. After minor resistance, her son arrives and waves at this writer through the computer screen on a video call. While he avoided making eye contact, his greeting was heartfelt and topped with warmth.

Madhav (14), son of Mugdha was diagnosed as being on the autism spectrum when he was 4. While Mugdha has spoken extensively about bringing up a neuro-diverse child, she is now onto raising awareness about the importance of building a community of parents who can support each other.

To help autistic children, she has co-founded Not That Different - a child-led movement that focuses on inclusion and understanding neurodiversity. The project is the outcome of a collaboration between Mugdha and Nidhi Mishra, founder of Bookosmia. It comprises a comic strip, in which Bookosmia's 12-year-old persona Sara introduces her readers to her new friend, Madhav, a child on the autism spectrum. Through Sara's journey of meeting and accepting someone a little different, one can understand what being neuro-diverse entails.

"Autism is a developmental difference that influences a person's worldview and their social engagements. However, what one fails to realise is how society's understanding and acceptance can positively impact the lives of autistic children and their families," Mugdha shares with Midday.

Also Read: Health cover denial sparks mother's advocacy for autistic son

Systemic issues that affect the growth of autistic children
"The government does not prioritise the creation of specialised policies for individuals with invisible disabilities, indicating a lack of recognition for their needs and challenges," opines Mugdha. Over a period of time, she has set 4 goals that she is primarily tackling to help the development of neurodivergent children:

Curriculum crisis: In India, there is currently an absence of a tailored curriculum specifically designed for functional academics catering to children with special needs. This gap continues as there are no educational reforms to enforce the diverse learning requirements of these children.

Lack of awareness on therapy: Is there a system by which the government is giving any kind of license to practice to the number of people who have now mushroomed in the name of therapy - questions Mugdha, highlighting the grave issue of self-anointed therapists that are emerging. How does one get to know which therapy center or which professional is qualified to be doing what they are doing?

No health cover: Autism and Down's Syndrome fall under the category of intellectual disabilities as per the Rights of Persons with Disabilities Act, 2016. This Act obligates the central and state governments to design schemes ensuring inclusive insurance coverage for persons with disabilities - however, insurance companies breach these regulations by refusing coverage or denying claims of individuals living with neurodivergence.

Disability certification: It requires 14 sittings spanning over 3 months to obtain the Unique Disability ID (UDID) Card. Usually, these sessions get extended leaving parent and their special-needs children harassed by the inefficient ways they are carried (elaborated later in this article).

Data deficit for policy formation
Regrettably, Mugdha sees little hope for progress, particularly because this disability is invisible, making it less likely to receive attention. Despite the recent efforts of the National Health Scheme to conduct a survey, it appears that individuals with invisible disabilities may not be adequately accounted for in the data collection process.

"Any matters concerning invisible disabilities or disabilities in general remain overlooked. Without a specialised census focused on data collection for individuals on the spectrum or those with invisible disabilities, they'll never be important enough for the government. So why do you see today blind association or the blinds in the country have the most solid presence?" asks the autism activist Mugdha.

Indeed, the visibility of blindness makes it impossible to conceal, and since individuals who are blind typically do not have cognitive impairments and are functional, they tend to receive the most support. Similarly, those who use wheelchairs often receive significant assistance. However, individuals with invisible disabilities face stigma and taboo, which complicates their access to support and understanding.

The issue primarily lies in the lack of acceptance, remarks Mugdha. "Parents often hesitate to openly acknowledge that their child has an invisible disability. Consequently, accurate statistics on the prevalence of these disabilities are lacking. Without this data, the government may perceive this demographic as a small and insignificant group."

When disabilities are approached collectively, progress tends to be limited. However, when specific conditions like autism are individually addressed, significant strides can be made. It's essential to recognise the prevalence of various special needs children across the country and have accurate data to inform decisions regarding school placements and government support.

Without precise numbers, appropriate interventions become challenging to implement. This highlights a significant gap in addressing discrimination, particularly between visible and invisible disabilities.

Also Read: Catch autism early: Key steps for early intervention

Obtaining UDID remains a complex task
Despite the government setting in place certain policies to address the needs of autistic children, it takes a lot of time and harassment to get the benefit of those policies, shares Mugdha. For example, obtaining her son's disability certification required 14 sessions spanning over three and a half months. While some may consider this relatively quick, it's worth noting that it typically involves a longer process.

"Now, just imagine taking your specially-abled child to a government hospital, which may not have public bathrooms, which, in the same room is also, evaluating your son along with inmates of your local jail. You are made to wait in lines for two to three hours for 14 different sessions and you are not even based in Bombay," Mugdha sheds light on the plight of parents and children who have to come from far off to obtain a UDID card.

Also Read: How bureaucracy is failing the applicants of Unique Disability ID

While the disability certificate indeed provides benefits such as access to writers or readers during examinations, additional time and permission to use a calculator, obtaining it is far from straightforward in our country.

Mugdha and Madhav's journey
When Madhav was diagnosed with autism, Mugdha was completely unaware of the developmental condition. It took her about three to four years to grasp the concept of autism and truly understand the needs of her differently-abled son. "Our journey began in Bangalore, which proved to be excellent in terms of therapy options. Following this, we relocated to Bombay, where his academic intervention began."

While Madhav began to make progress in academics, it was albeit slow. Regarding schools, Mugdha has exclusively turned to special needs schools to support her child, as mainstream schools, even those claiming to be inclusive or integrated, often lack the resources to adequately meet the needs of autistic children.

Instead, the family embarked on a journey focused on special needs education and enrolled him in specialised schools. Now, at the age of 14, Madhav continues to attend a special needs school and is passionate about fitness and is progressing at his own pace, focusing on functional academics.

Mugdha's career as a broadcast journalist has been instrumental in her efforts to create acceptance around neurodivergent children. Apart from raising awareness, Mugdha actively engages with parents of children with intellectual disabilities, equipping them with valuable tools to support their special needs.

On raising a child with a developmental difference, Mugdha opines that the initial difficulties are always there till you do not fully accept the fact that you have a differently abled child who perhaps is not neurotypical. Once that acceptance takes shape, you are ready to embrace the new life as new avenues open up.

"I've been very open with my friends and my family and my neighbours and my collegiate society about the fact that my son is autistic and that he has different needs and that he is going to occupy his deserving space in the world," says Mugdha who is indifferent to the opinions hurled at her. She concludes by saying:

In India, everyone will have an opinion on your parenting style. Everyone will have an opinion on why in the first place you have a special needs child. So the only way to deal with it is to accept that your child is autistic and raise them by prioritising their needs and at all times being prepared to give back answers when tough questions are put to you and fighting for your child's rights!

Also Read: Our expert answers some common questions about Autism

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