One late evening on a mountain top, I sat with my biker friends, warming up to the bonfire we had created gossiping over cups of hot coffee. The beauty of such banter is that you never really know which direction it might take. At one moment, you might be taking each other’s case and the other moment you might be arguing over a serious issue.
The gossip right now was about one of the boy’s new riding boots that was bothering him, causing him to eventually start limping.
As we laughed at him, some called him names and imitated his walk, he blurted out, “Only the wearer knows where the shoe pinches!”
“So why don’t you take it off?”, another friend fired with a grin on his face.
“And ride barefoot? Your Dad’s going to adopt me if I hurt myself, you idiot?”, came the instant reply. He was irritated and rightly so. A new riding shoe takes some breaking-in, some getting used to and it will pinch you until you either get used to it or tell others who have devised ways of dealing with this issue.
It was in a moment like this that I thought of relatability, of what brings me close to these buggers, women and men who love the smell of gasoline, dirt, burnt rubber and would ride to a place 100 kilometers away just to have a cutting chai.
And then, I realized, thanks to this relatability, I have developed a few circles for myself. One of them is this circle of motorheads, another one of people who like me, love great food but also focus on fitness, and then there’s the third, the most prominent one; One that rules my life day in and day out, and that is the circle of people who like me are related to someone who has what we loosely call, a disability. The relationship I have with this circle is what has shaped my life and a lot of who I am.
Now, I meet my biker friends every other Sunday and we share our jokes and journeys. I meet my gym bros every day. We train together, guide each other. But this group of people who like me have a space called “disability” in their lives, this group is often left out. Not because we don’t have technology to our advantage or shared passions, but because in the daily rut of life, we get busy dealing with the problems at hand and in a moment like that, it’s a choice between “let me deal with this problem first”, or, “let me call someone and seek guidance.”
More often than not, we end up choosing the first option because the day the term “disability” entered our lives, we switched to survival mode. We are more prone to dealing with the problem first because that is how we have been programmed.
But, being the younger brother to a fine lady with Apert Syndrome, I have realized one thing. Whenever there is a challenge, I can either try to overcome it, fail, try to overcome it again and fail again and keep repeating it until I have found a solution, or I discuss it with someone who’s in the same boat as I am. Yes, that other person might not be as far ahead in the journey as I would want, but if we’re in the same boat and we row it together, we might get to the destination faster.
I hope the answer to my next question is a big NO, but, have you ever had someone you know fight cancer? Have you heard people meet them and say things like, “Oh, I understand. But you’re strong. It’ll pass!”
Do you think those people really understand? Or do you think the person on the next bed in the hospital ward knows it better? Don’t you think the patient on the neighboring bed knows the catastrophe that chemotherapy can be, how it makes you break you first, making you feel pukish, lose hair, wish you’d rather die instead and then when it’s done, you eventually do get back to a better self? Don’t you think that after all the struggles that one has to go through, when someone says, “Oh, but once it’s done, you’ll live a happy life”, it instills a bit more faith in the patient than a frail, meaningless “I understand”?
I am writing from that same space.
I know what it is to have a specially-abled family member in the house. I know what it is like when they have a melt-down and throw things or shout uncontrollably. I know how weak the society makes us feel just because one member in our world is different, or rather bluntly speaking, less useful than the rest of us. I know what sibling fights are like. I know how at times a basic argument might turn into violence which finally leads to regret. I know the love-hate relationship you have with that “different” family member because you spend your lives trying to correct or improve them according to the worldly standards, and yet, the moment even a scratch comes on them, the world takes a backseat and the only thing that matters is that one person.
That one person in my life reminds me every day that she’s not perfect, but nor am I. And, (newsflash), neither are you. But because we’re all together on this ride, and we know where the shoe pinches, I thought why not start talking about it. I might not have all the answers, but hey, we’re in the same boat. Join me, hop in, pick up an oar and let’s see how far we get into the horizon.
Tons of love and hope, from a crazy brother who refuses to give up.