It was a fine afternoon in my former office when a coordinator from another project team brought along a set of new joiners for their round of introduction. Turn by turn, one from Bangalore, one from Pune, and then my (former) team introduced them to their names, and roles, turn by turn.
‘While I introduced my role to the project team, the coordinator added more to my introduction, applauding my recent PhD submission which got everyone to an ‘aww…’. This extended the round of introduction a little, digging further into my area of work. I started with a brief intro to the thesis, ‘Basically my work was on developmental disabilities…’ and before I could continue, it followed with a ‘wow’, appreciating the topic, and a follow-up (complex) question, ‘which form of developmental disability?’.’While I introduced my role to the project team, the coordinator added more to my introduction, applauding my recent PhD submission which got everyone to an ‘aww…’.
This extended the round of introduction a little, digging further into my area of work. I started with a brief intro to the thesis, ‘Basically my work was on developmental disabilities…’ and before I could continue, it followed with a ‘wow’, appreciating the topic, and a follow-up (complex) question, ‘which form of developmental disability?’.
Well, Why I said complex is not because there are a range of options to pick, but what would be the reason to pick one, which I could not explain. I replied ‘None specific, but IDDs as a wholesome construct’. I continued to introduce the rest of my thesis, ‘…and how parents perceive their child’s disabilities, what challenges do they face in the process, and while seeking care…..’. Reflecting on this, this has not been the first time. Be it social sciences, or the medical community, this question is raised to me (might also be the case with others), wherever I try to introduce my doctoral thesis.
I am taken back to the phase when I was working on my PhD synopsis, to studying the epidemiological trends of disabilities, and struggling of how to take it forward. Could not cherry-pick it; data is a big gamble-game to trust (and was quite evident through my own field experience where I struggled to find comprehensive data with respect to age, demographics, types etc; and a similar poorly representing figures in availability of proficient resource team to screen (or identify or diagnose) them correctly). Moreover, I am not a data-person, to put it more abruptly.
At conferences, or workshops, and social platforms, I was always left with this question of ‘which one? ’. Even if you read literary resources, or you have lived experience, or explore it as a researcher from the real-life experiences of a community, it is a hard task to segregate the experiences based on someone’s condition (developmental disabilities) when they are so intertwined.
While medical professionals would go by symptoms, psychologists would stand by the observed behaviour (all in technical language), hyperactivity and whatnot, a public health researcher would (adhering to a social/rights-based model) would bring them as one community (with diversity), the situation in space and time, like any other social identity or community representation. Important is to see this representation of construct, and their positionality in the wider context, which restricts the way they live, think, conduct themselves, and so do their carers.
Apparently, the game of terminology is a variant of domination. I will share an instance from my doctoral fieldwork, where a mother (also a manager in an NGO for children with disabilities), corrected me for the usage of the word ‘care-providers’, and evidently the Grammarly/language editing tools also identified the above-used word ‘carer’ with a suggestion to change it to ‘careers’ (humorously strange).
They asked, “Why do we refer to someone as ‘-providers’ or ‘givers’ or ‘takers’, while the one at the receiving end is strangely identified with their ‘dis-abilities’ such as, ‘an autistic child’, ‘child with cerebral palsy’, ‘girl who is handicapped’ and what not.
Though a politically strong statement-cum-argument would be to question the entirety of philanthropic documentation, political speeches, and even scientific writing, it would not be wrong to entitle its origin into ableistic complexities, that the usage of these terminologies has been inferiorly objectifying someone’s limitations or appearances and inactivity.
Even after my thesis draft, I keep pondering this question time and again, as has been strongly inherent in this ableistic world. What is there in the name? but…