'Faking well': Notes on navigating spaces, gatekeeping people with disabilities, and asking for help

Disabled people come in all shapes and sizes. Some of our disabilities are visible, some invisible. Some don’t deteriorate. Others fluctuate. Many disabilities — like psycho-social disabilities, chronic pain and fatigue — are increasingly being discussed in India. Still, I’ve learnt that asking for accommodations is among the hardest things to do, writes Srinidhi Raghavan

Srinidhi Raghavan March 18, 2020 09:11:56 IST
'Faking well': Notes on navigating spaces, gatekeeping people with disabilities, and asking for help

What is ‘normal’? In this fortnightly column, Srinidhi Raghavan explores the understanding of bodies-minds and navigating spaces as disabled, chronically ill and sick people. Read more from the series here.

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Since the Hyderabad metro recently began functioning in large parts of the city, as a fan of public transport, I’ve been using it to get to most places I needed to reach. On my way to a meeting one day, however, a woman came up to me and said: “Can you get up? I am older than you and want to sit.”

I didn’t want to move, but I obliged — even though it meant I could barely walk after that ride. I wrapped up the meeting quickly, disassociating from my pain, and took an auto back home, too tired to try the metro again. I could have told the woman in question that I live with chronic pain and would like to keep my seat. But experience had taught me to give in. You see, I don’t “look like I am in pain” — a sentence I have heard many times in these five-odd years of being in pain. There are of course many perks to not “looking” disabled/ill. People treat you the same as “non-disabled” individuals, for instance. But it has made me think.

Disabled people come in all shapes and sizes. Some of our disabilities are visible, some invisible. Some don’t deteriorate. Others fluctuate, over good and bad days. Many disabilities — like psycho-social disabilities and even chronic illnesses such as chronic pain and fatigue — are increasingly being discussed in India, on social media and across forums. Still, I’ve learnt that asking for accommodations is among the hardest things to do.

One hears comments like: “I would have never guessed”, “but you smile so much” or the very popular “you are so brave to keep going”. Some of these overlap with remarks made to people who are “visibly” disabled. But who decides what counts as “disabled enough” to ask for accommodations, is often a process in gatekeeping. We are still part of a system where someone else (usually a medical professional) gets to decide who counts as disabled.

Faking well Notes on navigating spaces gatekeeping people with disabilities and asking for help

Many disabilities — like psycho-social disabilities, chronic pain and fatigue — are increasingly being discussed in India. Still, I’ve learnt that asking for accommodations is among the hardest things to do, writes Srinidhi Raghavan. Illustration by Sharath Ravishankar/Firstpost

In honesty, mostly, I pass as non-disabled. Passing makes many things easier — like not getting asked intimate questions about how I use the bathroom, to name one. Every time I have asked for accommodations — be it an airport buggy, or a seat on the metro/bus — I am given quizzical looks which imply that this service is not meant for me. It seems impossible for me to get a metro seat when full, or an airport buggy even when empty, without revealing private confidential medical information, unless I am able to convince someone else that I need this accommodation — i.e. I am disabled enough to need it.

I learnt about “Faking Well” from this video by Annie Elainey, a Latinx disability rights activist on YouTube. She says in the description: “To clarify ‘faking well’ is not literal; it's a joke towards those looking to police disabilities. Faking well just means doing things that people find suspicious if a disabled person does it.” The truth is that faking well is exhausting and I wish more of us spoke about it. Seeing Annie discuss it really struck a chord with me. There are so many misconceptions around who is disabled, who needs support and how we need to ask it.

Let me illustrate with an example: Anand Mahindra once tweeted, asking if Indians were “jugaadus” (“hacks”) who didn’t want to walk, so used wheelchairs at airports. He implied of course that this harms disabled people.

There are many possibilities to the presence of more wheelchairs at airports, but the assumption that those asking for wheelchairs don’t necessarily need it is at the very least unnecessary, and at worst, ableist. To be honest, the chances that someone (probably like me) is not asking for the wheelchair when they need it, is pretending that anxiety attacks are “nothing”, is breaking down in the toilet and not in front of their colleagues — all are more possible than people faking their disability. More possible than us pretending to be this way to get attention (a thing that doctors will have you believe you are doing, when you return month after month in pain or in distress.)

This reminds me of the viral Tumblr post: “If I shouldn’t use my cane because I can sometimes technically walk without it, then abled people should no longer be allowed to use potholders to take things out of the oven”. This post posits that non-disabled people often act shocked when some of us use canes (or meds or other assistive aids) to support ourselves, when as a matter of habit we all use oven mitts to take stuff out of the oven. In reality, they are both assistive aids but I see myself defending using oven mitts less than I have to defend the need to stay seated on the metro. I am not saying that every seated young woman has chronic pain. But more often than not, when someone sees me in pain (this happens too), I am offered a seat by another person who probably also needs the seat, like another disabled person, an elderly person, or a pregnant woman.

The truth is we are more likely to be pretending we are “well” rather than demanding access requirements that are so hard to ask for in a society built to fit a certain kind of personality.  Ambulatory wheelchair users exist. Temporarily disabled people exist. Invisible disabilities exist. Sick people exist.

And all of us deserve to be seen, heard and seated, when we want.

As Leah Lakshmi Piepzna-Samarasinha, a queer, disabled, femme writer and performer says in their poem, ‘Crip Magic Spells’

Darling let me show you your first magic trick.

Asking for help is the first and last spell you’ll ever have to learn

It’s the one that everything else rests on.

It’s the simplest, hardest thing.

(…)

You’ve got those words

Burden, whiners, don’t ask them for too much

Echoing in your skull

But humour me.

Practice.

Practice.

Srinidhi Raghavan is a writer, researcher and trainer. She works at the intersections of sexuality, gender, disability and technology, is involved in programme development with Rising Flame and is co-founder — The Curio-city Collective.

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