Disability is an identity, like race, religion, caste, gender and sexuality. Even if a person does not want to be labelled as a disabled person, other people may attribute this identity to them. For example, people will refer to any person who uses a wheelchair, or a white cane, or a mobility scooter, as a person with disability. On the other hand, persons who would like to be recognised as disabled may not be given that recognition because they do not look disabled from their physical appearance. For example, the general public does not consider persons with anxiety disorder1 , or chronic pain2 , as disabled because they look 'normal'.
Disability is based on an impairment of the body or mind, and it is something any of us can develop at any stage in our lives. It is an issue that will affect all of us. Some of us may experience it as our parents grow older.
Unfortunately, owing to popular culture and other influences, many of us may not understand the present framing of disability. It is useful to take a brief look at the development of disability as an identity over time. This may help us appreciate where the discourse is now.
The charity/ medical model of disability
In earlier times, people thought disability was a curse or penalty for sins committed in this life or a previous one. Some people believed that persons with mental health disabilities or epilepsy were 'possessed' by an unworldly spirit. People with disabilities were objects of pity or scorn. This is referred to as the 'charity model' of disability. People would make donations to the disabled of amounts that they believed were adequate. This assistance was not enough to help the person with the disability live well, but it was enough for the person making the donation to feel better about themselves. Over time, scientific approaches to medicine improved. So did our understanding of the human body. This led to the 'medical model' of disability. This focused on the individual impairment and on how to fix it. If the individual could not be fixed, sometimes they would be removed from society in the 'best interests' of everyone concerned. This includes groups such as people with mental disorders, intellectual impairments, and contagious diseases such as leprosy. People believed that disability was an 'undesirable' trait in humankind. Much of the discourse around disability was how to prevent these traits from persisting in the human race. This field of science came to be known as eugenics. Eugenics became an influential field throughout the western world. It was adopted by the Nazi regime as a justification for laws relating to sterilisation of persons with undesirable traits. This later escalated into genocide - one of the first victims of the Holocaust were, in fact, children with disabilities3.
Disability rights came to the forefront in the aftermath of the world wars. After the wars, the available labour force sharply reduced in number because of casualties and injuries. This prompted better economic inclusion for many persons with disabilities4 , particularly war veterans5 . Persons across disabilities came together as a lobby force demanding their rights to citizenship. One such organisation formed in the United States was the American Federation of the Physically Handicapped (AFPH)6.
The social model of disability
The social model of disability emerged around this time. The social model is: A person may have an impairment, but what really disables them are various barriers that prevent their participation in society on an equal basis with others. A lack of availability of books in braille or in an electronic format disables a blind person in the context of receiving an education. A lack of sign language interpretation disables a Deaf person. A lack of accessible infrastructure disables a wheelchair user. Negative attitudes and stigma disables a person with mental health issues. The social model seeks to move the focus away from the individual's impairment. Instead, it focuses on how we can remove barriers that prevent people with disabilities from participating on an equal basis with others.
Video: "The Social Model of disability and what it means for people with disabilities" https://youtu.be/0e24rfTZ2CQ7
This is why the preferred term is "persons with disabilities". 'Differently abled' or 'specially abled' or the now popular 'divyaang' places an onus on a person with impairment to have something extraordinary about them. This plays into tropes about persons with disabilities that they must be 'extraordinary'. Instead, they would like the right to be as normal and mundane as everyone else!
[Editor's note: "Divyaang" literally translates to "divine-bodied" in several Indic languages. The term has been adopted by agencies of the Indian government such as the Department of Empowerment of Persons with Disabilities8 and the Indian Railways9 , which refer to disabled persons as 'Divyangjan'.]
Do: Use the term 'persons with disabilities' or 'disabled people' when referring to this constituency
Don't: Use terms such as specially abled, differently abled, handicapped, special, divyaang, et cetera.
Person-first language and exceptions
Most people with disability prefer "person-first" language ("I am a person first, and then I am disabled.") There are some notable exceptions to this preference. Many disabled groups prefer to be addressed by their impairment, for example, the blind, and the Deaf. The term (d)eaf is used for someone who has a complete hearing impairment, but the use of the term (D)eaf is to refer to people who are 'culturally deaf'. The Deaf communicate in Sign Language and identify as members of the Deaf community. The community refers to itself as a 'linguistic minority'. Persons who are (d)eaf may not use sign language, preferring to lip read and speak instead. They may want to opt for cochlear implants. Many people who are on the Autism spectrum call themselves "autistic" as opposed to "persons with autism"10.
Do: When you refer to a group of persons who have an impairment, do your research on the terminology preferred by the members of that group. Remember to refer to resources developed by persons with that disability and not by parents or professionals.
Don't: The disability movement and persons with disabilities have been reclaiming11 terms such as "mad" and "cripple". Please do not use these terms to describe persons with disabilities even if they have used the same terms to refer to themselves. Always use direct quotes of the person with disability in places where the person has used such terms.
Disability as a part of human diversity
There is no fixed definition of people with disabilities that excludes or includes any specific group. The definition as per the UN Convention on the Rights of Persons with Disabilities12 "include(s) those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others". In line with this definition, the Convention has seven guiding principles, which includes "respect for difference and acceptance of persons with disabilities as part of human diversity and humanity". Persons with Down's Syndrome believe that prenatal testing will lead to them being 'screened out' of existence in the future and are protesting a new range of tests13 . The Deaf community protests against the imposition of cochlear implants as a 'cure' for deafness14 . They believe that the focus should be on removing barriers to participation, instead of removing them as a group of diverse human beings.
Do: When you refer to a specific person with a disability, where possible, refer to the person's own narration of their experience. You may also want to refer to the works of writers on disability studies who may have placed the person's experience in context.
Don't: Assume disability is the end of someone's life. Don't let your writing reflect
negativity either. Instead, try the following:
"Wheelchair bound" - "wheelchair user"
"Suffered from polio" - "ontracted polio" OR "is/ was a polio survivor", if the person has used this phrasing to describe themselves
"devastated/ ruined by a condition" - "developed/ acquired a condition"
Limitations of the social model
The social model isn't perfect. Many groups feel that they identify as persons with disabilities but do not share the view that barriers to participation are entirely external. An example of this is persons who experience chronic pain. They identify as persons with disabilities, but they also feel that more focus needs to be on curing the disease that causes this pain. Another example is persons who have spinal cord injuries. The social model means we need to focus on barriers to accessing assistive devices and accessible infrastructure. However, persons with spinal cord injuries also want the medical establishment to respond to, say, their vulnerability to urinary tract infections resulting from the use of a catheters. In the present times, a balance has been sought between the medical and social model, depending on the impairment group that is involved.
Do: Read user accounts of the impairment you are concerned with.
Don't: Assume everyone with a disability is looking for a cure, but empathise with those who are.
One of the most important shifts in conversation regarding people with disabilities is the question of objectification of their lives, particularly with regard to the oft-repeated trope that people with disabilities are "inspiring" to the able-bodied person. People with disabilities have come out and explained why this practice is harmful and really makes no tangible value addition to the lives of persons with disabilities.
Video: "I'm not your inspiration, thank you very much| Stella Young" https://youtu.be/8K9Gg164Bsw15
Do: Appreciate the achievements of persons with disabilities who have had to overcome significant barriers.
Don't: Use words such as 'inspiring' and 'divine' to describe the attributes of a person with a disability.next: Technology and persons with disabilities