Being disabled and being proud of it

Either via Facebook or different online groups, I often get to interact with people with different disabilities from all over the world. There is this one particular topic that has caught my attention: there are many people with disabilities, especially in the West, who are proud of being disabled. They are so proud that when somebody talks about “treating” that disability, they are offended. They often argue that they are fine with how they are and they don’t feel bad about it.

I especially mentioned “West” because they have a totally different lifestyle. I haven’t had an opportunity to talk to people from either India or from other lesser developed countries unfortunately, but it will be interesting to know their take on this.

When I am asked how I feel about my disability (in fact I don’t just have a single disability in the conventional sense, I have multiple disabilities due to cerebral palsy) I don’t say that I’m proud of being disabled, I say that I am proud of myself, despite my disability.

I don’t see disability as my identity. For me it is not something to the tune of what Descartes said, “I have cerebral palsy therefore I am”. For me it is more of a hindrance. I will come back to this thought later on.

Comparatively things in West are easier. Most of the places are accessible. Even restaurants and bars are quite accessible for that matter. People can easily use public transport. There are more disabled people in schools, colleges, food joints, railway stations and offices compared to a place like India. There is a solid social security system. The rehabilitation programs are much better and concrete. The food is good. There are better career opportunities for the disabled. They don’t have to spend lots of energy on fundamental day-to-day survival. For instance, if they want to go out for dinner, it is much easier. Here in India, if you use a wheelchair, merely the act of getting outside of your house onto the road can in itself become an ordeal, forget about having a fun filled evening with your friends or family. I have disabled friends who haven’t gone out for years.

You feel less and less disabled if your daily needs are easily met with. When you don’t have to think twice before visiting a local general store. So one has this luxury to feel good about being disabled. Disability, as they often say, is more environmental and less physical, at least when it comes to an average lifestyle – climbing a mountain can be difficult for both disabled and enabled people at certain levels.

A few months ago we moved to Indirapuram. Since these residential localities are being developed according to modern lifestyles, competitively they are far more accessible compared to conventional towns and localities. When we moved, our building didn’t have a ramp. We talked to the RWA and now we have ramps in every building. There are two fully functional lifts in every building. From the compound of the building to our apartment I don’t have to encounter even a single step.

Nearby there is a shopping mall. I won’t say that the mall was constructed keeping accessibility in mind but most of the modern malls are built in such a way that people can easily use trolleys. Since they use trolleys, they have ramps wherever there are steps. Although perpetually in a state of disuse, most of them have “toilets for the handicapped”. Consequently, without encountering a single obstruction, I can go to the mall, purchase the daily necessities of life, and come back. I have never felt so independent. I don’t have to depend on anybody. In the previous blog post when I wrote about roadside barbers, I can easily roam around in the entire area without any problem. I don’t even have to tell anybody before going out because everything, at least to me, is fully accessible.

Make some changes in the apartment and I will be able to do practically everything. Does this make me disregard the fact that I am physically disabled? It suits my environmental definition of disability.

But I’m independent as long as I am in this comfortable zone. What if I want to climb up a mountain? What if I want to go on trekking? What if I want to travel in a train with my family? What it I want to explore in a jungle on a my own? What if I want to run around with my daughter and play all sorts of games with her?

All these things I want to do but I am unable to do because of my physical disability. Now you can say that if I put my mind to all these things, in one way or another I can accomplish them. Sure I can. But then it will be more about proving a point rather than doing and enjoying those things.

When we were kids we were shown a movie in our school (I studied in a special school, mostly for spastic children). There was this boy who wanted to climb a mountain and reach its peak. The only problem was that he had cerebral palsy and he had more than 90% physical as well as speech impairment. His family and their friends got together and made a plan. Together with 6 people they started their expedition. The used rope and they built a special wooden platform on which the boy could sit without falling off. With every push of the rope he squealed with happiness and eventually after hours of struggle they all reached at the top and the boy was ecstatic.

When the teacher asked us how we felt after seeing the movie, my only reaction was “What’s the point? He didn’t climb the mountain, he was just carried there.”

Similarly when people say that they are proud of their disability the immediate question that comes to my mind is, “What is your exact point?”. Let us suppose that all the ramps, fancy wheelchairs and everything else that helps you live a “normal” lifestyle are taken away, will you still feel proud of your disability? In my opinion you are simply trying to prove a point and nothing else.

Disability for me is a hindrance because it stops me from doing things that I would like to do in my own way. I’m fed up of compromises. I don’t want to do things just for the heck of doing them, I want to do them because I want to do them, and in a way I want to do.

Does the thought that I may never be able to do them make me miserable? It used to, but not now. Does the thought make me less confident and think less of me? Again I will say, it used to, but not now.

I’m not proud of my disability, but I am at peace with myself. I know my worth and I have people around me who love me and appreciate me for my inner qualities. Nobody around me is happy about my disability but they are certainly happy about the way I deal with it, and I think that’s what matters. The rest is jingoism.