When Gitanjali Govindarajan, educator and Director of Snehadhara, a city-based NGO, took a group of people with Intellectual and Developmental Disabilities (IDDs) on a visit to the Gollahalli railway station last month, little did she know the group would not only be denied entry, but would also be threatened with physical harm by officials at the station.
The episode, captured on video by the NGO, soon went viral, highlighting the discrimination that persons with disabilities (PwDs) continue to face as a result of lack of sensitivity and awareness. It also underscored the importance of language while engaging with people from marginalised communities.
“When we talk of communities that are underrepresented or discriminated against, language plays a key role. Bracketing children with IDDs under the term “mental retardation” (also an inappropriate term) may not be a fair representation because we are talking about ‘diverse learning groups’. More importantly, we must remember they are ultimately just children who learn differently,” says Dr. Govindarajan.
Arman Ali, Executive Director, National Centre for Promotion of Employment for Disabled People (NCPEDP) agrees that we must do away with terms like ‘retarded’, ‘crippled’ or ‘wheelchair-bound’. “A wheelchair is very enabling and I use one myself. If you take that away from me, it causes a lot of trauma navigating a highly inaccessible country like India,” he says.
The United Nations Disability Inclusion Strategy agrees with disability rights activists in advocating the widely accepted “people-first” language while referring to PwDs. People-first language emphasises the person, not the disability, such as a person with dwarfism, person with autism, person with paraplegia. Not a dwarf, an autistic or a paraplegic.
Terminologies, Mr. Ali believes, also matters for an accurate statement of facts. For instance, the term “persons with disabilities” is well-accepted in India and is even encoded in the Rights of Persons with Disabilities (RPwD) Act, 2016. However, in countries like the UK, “disabled people” is a more preferred term as it foregrounds the role of society in disabling people.
“In the Western world, disability is often defined as barriers existing in society and infrastructure that prevent full inclusion of a person. When you say “disabled person”, you are accepting that society has failed and that’s why a person is disabled,” explains Nipun Malhotra, CEO of Nipman Foundation that focuses on health and advocacy for PwDs.
Moving beyond labels and euphemisms
Language, however, is also limiting when it comes to human connections; not to mention, constantly changing. Therefore, even as we adopt a rights-based language when referring to PwDs, activists wonder if we can focus on the primary issues concerning the community without getting carried away by “positive” labels and euphemisms.
The RPwD Act, 2016, identifies 18 different types of disabilities. “Addressing someone as specially abled, differently abled or exceptionally abled does not improve their lives. According to government data, 75% students with disability drop out of school in India. If I am being denied a fundamental right on the basis of identity, how does the right terminology enable me?” asks Mr. Ali.
Considering the acute lack of awareness about disability in India, language can also create stereotypes. In 2016, upon Prime Minister Narendra Modi’s suggestion, the Hindi word for PwDs was changed from Viklang (one with non-functional body parts) to Divyang (one with a divine body part or divine power), which disability rights activists say puts undue pressure on PwDs to use their will power to do activities of daily living.
As an invisible minority in India, what PwDs need is not a softer or a politer name. They want basic rights and dignity without stereotyping them as superheroes, the sick or the godsent, they say.
“The bigger question is not what we call them but how we treat them based on what they are called. Are labels in fact strengthening the othering? The minute you put labels, it means ‘You and I are different’,” says Dr. Gitanjali taking strong exception to such romanticised terminology.
Acute lack of awareness, sensitivity
Jargon like diversity and inclusion, while important in the conversation about disability rights, also run the risk or remaining mere catchphrases with a shelf life.
As a social entrepreneur helping public and private sector organisations become more inclusive of PwDs, Mr. Malhotra developed the 3As (Attitudes, Accessibility, Affordability) framework. “People asked me why I put attitude before accessibility. Accessibility is visible but it is driven by attitudes. Until people internalise that PwDs are just like them, change will not happen,” he says.
To build awareness and empathy, activists suggest introducing disability sensitisation education at school level to normalise the idea of disability from a young age.
Disability is a life span approach from ages 0-100, Mr. Ali observes, suggesting the need to create a mission mode for awareness along the lines of government campaigns like Swacch Bharat Abhiyaan and Beti Bachao Beti Padhao.
“People with disabilities are people, too, and access, education and employment are something everyone needs. The needs are same, just the means are different,” he says.
|What to avoid||What to say|
|Disabled, differently-abled/challenged, specially-abled/challenged||Person with disabilities or disabled person|
|Mentally challenged, mentally retarded||Person with intellectual and developmental disabilities|
|Spastic||Person with cerebral palsy|
|Autistic||Person with autism spectrum disorder|
|Handicapped, crippled, invalid||Disabled person, person with physical disability|
|The blind, visually challenged||Person with visual impairment; blind people; partially-sighted people|
|The deaf, deaf and dumb||Person with a hearing impairment, deaf person or deaf-mute|
|Mental patient, insane, mad||Person with a mental health condition|
|Dwarf, midget||Person with dwarfism, restricted growth or short stature|
|Abled-bodied, normal||Non-disabled, average, typical, neurotypical|