Twelve-year-old Joel does not speak more than one word at a time, but uses body language to communicate. He loves music, and remembers all the lyrics of the songs he likes, trying to sing along.

He has Down’s Syndrome, a lifelong condition that has different manifestations in physical and mental attributes. Most children with the disorder need speech and physical therapy. Furthermore, as they grow up, occupational therapy is essential.

Sajan Titus, Joel’s dad, says the family makes sure to take him everywhere they go — be it to the market, church, or visiting someone. He admits that the general public’s reaction to his son is cold, sometimes downright rude. “We take him out and people will stare. If there are small kids, they’ll pull away,” adding that over a period of time they’ve learnt to live with it.

Like Titus, Madhusudan Srinivas, father of Abhimanyu, who turns 25 this Sunday, believes in taking his son out, like “a personal crusade”. “He’s the kind of autistic person who will look normal but will tap his face or exhibit other ‘peculiar’ behaviour. Anyone who sees that — even our relatives or friends — could become apprehensive.”

Autism is a disorder with a range of conditions including challenges in social skills, repetitive behaviour and speech disorders. Srinivas says his son’s behaviour is a defence and not an offence, but “are we as a society ready to understand that?”

The Titus family believes an integrated education is the right one.

He says gestures and direct abuse from the public are just physical acts he abhors. Sometimes, other kinds of action from people close to him have been offensive. “For example, we’ve not been invited for some weddings on the presumed notion that my son would be uncomfortable, or that the larger community would be uncomfortable.”

Many people fear those with mental disorders. It is like the fear of the unknown. When people don’t understand the condition, they are uneasy and want to run in the opposite direction.

Srinivas points to the people’s lack of empathy, “they are more focused on consoles, moving pictures,” and not people. “Many are brought up hating the other.” He reflects on how people’s notions directly relate to the way the other looks, “when they see an unkempt person, they want to perpetrate violence against them”.

He points to the recent killing of a mentally ill man in Kerala’s Palakkad by a mob. The man called Madhu succumbed to injuries after he was brutally assaulted, for (they say) stealing rice. His mother was quoted as saying that her son had been unwell for the last 10 years, living in caves in the forest and only venturing out when he was hungry.

The men went looking for Madhu in the forest, found him and tied him up, beat him with sticks and called the police, after taking selfies with their victim. What his case exemplifies, Srinivas points out, is “the fear of someone not like you.” Awareness through the media, is one solution as well as promoting integrated learning. For all kids, despite their abilities, to be able to study together would be one way to understand the things that make people unique.

When Joel’s family lived in Hyderabad, they found a ‘normal’ school that accepted him “as an experiment”, but moving to Delhi brought new challenges. With integrated schools being very expensive, Joel now goes to a special needs one.

Even here, Titus says he found it disturbing that families demand that the school be kept open during the summer holidays as they don’t want the child at home. He didn’t know whom to blame, “the culture? Because in Delhi things are openly crude. People’s perception of their own kids is very concerning”. There are cases where kids while being helped and trained at school find themselves behind lock and key upon returning home.

Even in the medical profession, barring mental health care practitioners, it doesn’t seem like all understand the disorders. Take Shweta Dey, a 24-year-old with cerebral palsy. Neurological conditions affect her movements, while others like her may also have problems with communication and learning, even affecting vision and hearing.

Shweta Dey enjoys a day out with her family.

Shweta’s has been bedridden for several years. During a recent bout of sickness, doctors didn’t show much hope saying “such kids and their quality of life will never be better.”

In the earlier days of hospitalisation, “doctors thought she was unresponsive. They didn’t understand her mental condition,” says her sister Swati. She says she had to plead with them to allow her and her mother to meet her sister in the ICU as often as possible, “else Shweta would not be able to cope”, adding that people like her find it difficult to adapt to new or strange environments.

The Deys have had to face many thoughtless jibes, insults and pity directed at the family. The gravest instance was when neighbours told them to their face that death would be better for the girl than living this way.

People’s perception of those with special needs is apathetic. Is there no place for those other than whom the general public deems “normal”?

This story was published in the Patriot.