By Antara Sengupta for Youth Ki Awaaz:
Mahendra Vinayak Agavni, 45, a resident of Kurla in Mumbai has had a tough day in the city’s suburban trains. It’s an ordeal he faces pretty much everywhere he goes.
Agavni, a peon in the Indian Navy, is a dwarf or a ‘little person’, as they are known. Standing 3 feet 5 inches tall, for close to 20 years now, he has been taking the train to Chhatrapati Shivaji Terminal (CST) daily. No mean task for anyone, let alone a person of short stature, he has figured out his own way to manoeuvre through the crowds, “I hold on to people’s bags and let other people push me into the compartment… Everything I do is an ordeal. There is no place that’s not a struggle to get in and out of for people like me,” he tells us.
48-year-old D. Mallesh of Uppal village Hyderabad also suffers from dwarfism.
For 16 years, Mallesh was a clown in a circus. “I looked for other jobs. But people I met took one look at me and told me I was useless. That I was too short to fetch things from high places, and that I won’t be able to sit on a normal chair and work. They were not wrong,” Mallesh tells YKA. “I’m not even tall enough to pee in public urinals. I’ve gotten used to life as it is. Things won’t change. No one’s hearing us,” he adds.
The Little People of America (LPA) defines dwarfism as “a medical or genetic condition that usually results in an adult height of 4’10” or shorter, among both men and women… The average height of an adult with dwarfism is 4’0, but typical heights range from 2’8 to 4’8.”
Dwarfs face problems that most other people don’t give a second thought to. For example, door handles. Most find door handles placed too high for them. Public urinals aren’t fixed while keeping people of such short stature in mind. Chairs and desks aren’t dwarf-friendly. Public transport doesn’t have ramps for easy entry and exit for them and even cars don’t come equipped with specifications to suit their needs.
“Their problems are very similar to wheelchair-dependent people,” says Shabnam Rangwala, head of therapy at ADAPT, India’s first special school for children with cerebral palsy. “In India, infrastructure is not friendly to people like them.”
In line with the United Nations convention on disability, India enacted a Persons with Disability (PWD) Act in 1995. The Act defined the rights for people with disabilities. However, till 2014, dwarfism was not a separate classification in the Act. Even the 2011 Census which listed 6,105,477 people with locomotor disabilities in India, failed to count dwarfs separately.
Then in 2015, the Standing Committee on Social Justice and Empowerment presented The Rights of Persons with Disabilities Bill, 2014, which looked at dwarfism with a fresh pair of eyes.
The committee recommended that “dwarfism should be considered as a distinct disability rather than a part of locomotor disability.”
It said people with dwarfism were able to perform all normal activities but need help to do them because of their height and certain other physical characteristics peculiar to them.
But for all that, Parliament is yet to pass the bill. And that’s a telling statement on how lawmakers in India look at dwarfism and the special needs of this section of India’s population.
Experts say it’s a vicious circle. “With discrimination over the years and the absence of jobs, they can’t elevate themselves from their current economic situation. With no education, they are forced to do low-paid jobs,” says M. Srinivasulu of Network of Persons with Disability (PWD) organisation in Hyderabad.
In 2005, Srinivasulu formed a group and filed a petition in the Andhra Pradesh High Court seeking special status for dwarfs. The petition demanded free public transport passes, right to education and loans at low interests. The group got a favourable response and these facilities are provided to the dwarf population in AP and Telangana.
If the proposed PWD bill, 2014 becomes an Act, people suffering from dwarfism will get 1% of the 5% jobs reserved for the disabled.
While physical needs might still get taken care of, that in itself is not enough for a better life for people like Agavni, Mallesh and their families.
“There is a need for social awareness and public sensitisation. They are laughed at, stereotyped for certain jobs and discriminated against in several spheres – these need to be corrected,” says Javed Abidi, world chair of Disabled People’s International and director of the National Centre for Promotion of Employment for Disabled People, Delhi.
As of now, aside from Andhra Pradesh, only Telangana and Kerala have done something to help this community. The Uttarakhand government, in January, offered an allowance of ₹800 per month to eligible dwarf adults and also gives them reservations in certain services of the state government.
In the United States of America, dwarfism is a recognised condition under the Americans with Disabilities Act.
There are organised groups like ‘Little People of America’ that ensure the rights of dwarfs in the USA. Similarly, there are little people groups in South Africa, United Kingdom, Canada, New Zealand, California and Atlanta among others.
These groups offer regular awareness workshops, college scholarships and support, adoption and conference attendance grants, medical camps, international conferences and socialising meets for dwarfs in their nations.
Abidi says, in India, sympathy is seen mostly for people with disabilities that are orthopaedic in nature, or visual and hearing impairments – ones that are starkly visible and advocated for by various activists and groups.
“All facilities go to these disabilities. However, the problem is also that there are a very few organised groups that are fighting for the rights of the dwarf population. They should get together and demand their rights,” he adds.
Recently, the Kerala Small Men Association approached Srinivasulu’s organisation and is asking for reservation under the PWD Act, 1995.
“It is important to give them political reservation. If they aren’t politically represented, it will be tough for them to fight for their rights,” concludes Srinivasulu.
Antara Sengupta is a Mumbai-based independent journalist and a research fellow with Observer Research Foundation Mumbai. She is a member of 101Reporters.com, a pan-India network of grassroots reporters.