I was recently asked to speak at a conference on the work that an organisation I’m associated with is doing. The theme was ‘How effective communication strategies are needed to combat air pollution’ and I talked about the inclusion of marginalised voices in these spaces. It was a big deal for me because I’m not great with public speaking, more so since my Meniere’s.
It’s been two years since my symptoms began and I’ve generally figured out a way to be in public with it. In the first year, I refused to go out. Aside from being triggered by pretty much everything under the sun, I didn’t feel comfortable using a walking stick and was terrified of falling in public. But, I slowly started stepping out; a lunch here, a visit to a friend there. At the one-year mark, I was able to attend work events in person.
But, people can be shitty.
I go about minding my own business and random strangers believe they have the right to ask me intrusive questions. I’ve had someone I crossed while getting off an elevator ask me what happened to me (literally, just crossed; she was getting on and I was getting off!). Last month, a man came from behind me on the road, blocked my path and demanded I tell him why I needed a stick.
In the latest instalment of ‘I have the right to know what is wrong with you so I can tell you how to fix it’, I was at the aforementioned conference where more questions were raised about my stick than my work. Here’s one conversation with a person I’ve met before,
Them: “Why are you still using the stick?”
Me: “Oh, it’s probably a lifelong thing.”
Them: “You know, I will also have to get one soon. I keep getting this knee pain when I stand for too long.”
SIGH.
After my panel, someone came up to me and I was excited to talk about the points I had raised. Nope. “What happened to your leg?” “It’s actually not my leg. I have a balance disability.” “What a pity! That must be so difficult. How do you manage?”
No. Don’t make excuses. Don’t tell me, “Roshini, it’s just that people don’t know what to say.” “This is how they empathise.” “It’s awkward for people.” If it is awkward, don’t talk about it.
Look, I get it. Really. This urge to say something. The curiosity. The stick looming over your head, the elephant in the room.
BUT,
it is not my responsibility to always be the bigger person and answer these questions. I am the one dealing with the disability every damn day. The person who cannot sleep because of the tinnitus or walk in a straight line because of the dizziness. The one afraid of losing her hearing or scared she’s turning into Dr. House (IYKYK) by ‘grumbling’ about it.
There are few spaces where I feel safe. Spaces where my Meniere’s exists, but it isn’t the only thing that is there. I don’t think about it too much when I am outside because I want to be present in what is going on. Be present in conversations with friends, talk about my work, or even just listen without it always being about my Meniere’s. I’ll talk about it too, but my human experience isn’t wholly this.
If I am at a conference on Meniere’s or vestibular disorders or disability rights, by all means, ask away. If I know you and you want to ask me how I am doing, go for it. I appreciate the concern – truly. I have had school mates, college acquaintances and even strangers message me on social media and we’ve had meaningful conversations about my Meniere’s. They are conversations that have touched me and made me feel less lonely.
I know I sound bitter and it is only because I won’t say these things to those strangers in person. I won’t say it because it still catches me off guard and more so, because I don’t want to be the asshole. I’ll suck it up and hear about how I should try yoga instead of talking about the ways we can protect urban poor people from the adverse effects of climate change (seriously, we need to do more!). I don’t have the guts to tell you off, so you need to be the one to stop!
My body is mine and I don’t owe you an explanation.
Article by Roshini Suparna Diwakar
THE GLASS ELEVATOR 