Let’s Talk Disability – Suruthi Gnanenthiran
Disabled people. Everyone knows we exist and yet it’s something you never hear mentioned in the South Asian community. It’s a taboo topic, but it really shouldn’t be and I wanted to share a few reasons why talking about disability can be beneficial to our community.
I was first aware of the fact disability is a taboo topic from my own experiences growing up with Juvenile Idiopathic Arthritis. My mum told me never to tell anyone, and this caused a lot of arguments for us as I felt like my own mum was ashamed of me. She always said she didn’t want to give people a reason to gossip about me but this just confused me more; since when was disability something to gossip about? However, as I grew older, I started to understand my mum’s view a bit more, even though I still didn’t agree with them. I saw how people spoke about other’s conditions, and blamed it on unrelated factors such as their diet. Some conditions aren’t always visible, and these are often met with skepticism. I’ve had many people question if I’m lying either because I don’t ‘look ill’, or because I am ‘too young’; and my mum just wants to protect me from such hurtful comments. However, the reason behind this is that so many people are unaware of many disabilities, and that’s because we don’t talk about them. It’s also so hard to hide it sometimes, like at the temple when you are expected to sit on the floor. As my mum didn’t want anyone to know, I had to just do my best to blend in, which meant sitting in uncomfortable positions that would inevitably cause me pain. Hiding my disability wasn’t hurting anyone else but me, and that’s when I realised it’s time to stop hiding something that I am not ashamed of.
If we break the stigma around disabilities and start discussing them more openly, people are going to be inevitably more educated on the subject matter and hopefully make fewer unwarranted comments to disabled people like myself. I can’t tell you how many people have just told me to have more turmeric, do yoga or try harder to overcome my incurable condition. There is nothing more infuriating that someone behaving like they know more about your condition than you, when you’ve lived with it for two decades. People often think that Arthritis is a condition that only effects the older population or is a result of wear and tear, but neither of these are true. I was diagnosed at the age of 3, and 1 in 1000 children in the UK are diagnosed before the age of 16. It was lonely at times, missing events and not being able to tell people why, and I hope by speaking about our disabilities more freely, we can support each other.
Sharing our disabilities with people also gives us a better idea of family history. Doctors have asked me before if there is a family history of arthritis to which I respond ‘no’, but if no-one is talking about their conditions, how would I possibly know? Knowing this information can really help with getting diagnosed and so it’s really important that we mention these conditions to our family members.
It’s not a change that happens overnight, but with time I really hope that disability stops being so taboo. I shared my own story quite publicly on social media and was so scared that someone would tell my mum but instead I was receiving messages from many South Asians that also had a disability that they felt they couldn’t share. It seemed that so many others were keeping their condition a secret out of fear of being judged or misunderstood, and dealing with it by yourself can be quite lonely. I found out I even had family members going through similar experiences and we were able to bond over this.
The most significant moment that stands out to me is when a friend told me “if you hadn’t been so open about your condition, I would have never known just how much Arthritis can affect someone”. Knowing that even one person is more informed on my condition and invisible illnesses gives me hope that slowly but surely, our society becomes more understanding of disabilities.
By Suruthi Gnanenthiran | Instagram: @fightrheumatoidarthritis
