What disability means to me

What does it is mean to have a disability?

Frankly, there cannot be a single answer to this question, and this characteristic (that there cannot be a single answer) can be attributed to practically every aspect of life: “What it means to be a transgender?” or, “What it means to be a poor person?”, or even, “What it means to be a rich person?”, or even, “What it means to be a writer?”

This is because every person is going to have a unique answer based on where he or she lives, what sort of society he or she is surrounded by, whether he or she is financially independent or not, and what is his or her educational or awareness background.

For example, in the Western world, while many persons with disabilities cannot decide whether to feel good or bad about having a disability and what is able-ism and what is not, in the developing world the question may have existential connotations at a much deeper level.

A person living in rural India and not being able to move out of his or her home because there is no wheelchair and even if there is a wheelchair, there are no plain roads and floors, may have a totally different take on what it means to be a person with disability than someone living in Los Angeles cruising around on a power wheelchair.

In a place like Sparta, babies with disabilities were killed the moment they were born (frankly, I’m not sure if this is real). Contrast this with the modern world: we have disability rights and constitutional privileges that enable us to sue businesses and organizations if they don’t provide certain accommodations for us.

In fact, I strongly believe that the meaning of disability will change in the next 150–200 years when it won’t matter to even have a body. If we don’t destroy ourselves by then, I’m pretty sure technology will enable us to transcend the limits of our bodies.

Around a few year ago I came across a news about someone who blinded herself intentionally (hyperlink) to become a visually impaired person. It was her life-long dream to be disabled.

Maybe after a couple of centuries I will be able to relate to having eyesight or not being a lifestyle choice (something like, having long hair or short hair), but right now, I just can’t understand why a person would like to lose such a blessing, purposely. The strange thing is, she is not alone.

A few weeks ago, or maybe a couple of months ago ( I can’t find the thread now) I came across someone’s post on Facebook claiming that she was proud to be a person with disability and she would rather be a disabled person than a non-disabled person. And she was not being religious.

At that time, I found her statement quite cringe-worthy. I have spent my entire life dealing with cerebral palsy and I can state with 100% surety, I have never felt proud of having cerebral palsy.

Sure, I have had my proud moments. Despite my disability I have lived an independent life and I’m proud of that. I’m raising a family and am proud of that. I’m proud of my daughter. I’m proud of my wife and the fact that she finds me totally capable of providing for her and our daughter no matter how our financial situation is. I’m proud of the fact that her trust in me never waivers.

But simply being proud of being more than 80% physically disabled due to cerebral palsy, no, I cannot see the logic.

Our circumstances make us. Actually, not the circumstances, but how we react to those circumstances.

Some people excel even when they are born into extreme poverty or are pushed into extreme poverty.

A coolie named Sreenath K in Kerala cracked the Public Service exam by using free Wi-Fi available at the railway station to study, rather than watching meaningless videos on YouTube (hyperlink).

Malala Yousafzai became a Nobel Prize winning, world renowned human rights activist, despite being shot in the head for wanting to go to school in Pakistan.

Arunima Sinha was a national level volleyball player when she lost her leg while trying to fight with train robbers. Always wanting to do something great in life she decided not to give up and conquered Mount Everest and became the first Indian female amputee to achieve that.

Was Sreenath proud of the fact that he was poor? Was Malala proud that she lived in a place where wanting to go to school can get a bullet in your head? Was Arunima proud that at the peak of her career as a national level volleyball player she lost her leg?

I think none of these people who have achieved great feats were proud of their circumstances. But they are surely proud of becoming what they are right now despite their circumstances.

Disability is a condition or an environment that limits your independence compared to people not having a disability. Right now, in the current state of technology, medicine, socio-ideological milieu, and even finance, having a disability is a disadvantage compared to the next person who doesn’t have a disability.

Now, you can say that you might be having a more fulfilling, happier life compared to the person who doesn’t have a disability, and I totally agree with you. I’m sure that I’m much happier and more content compared to many people around me who don’t have cerebral palsy or any other type of movement-confining disability. That’s because of my attitude and the way I deal with life. That’s a different issue. That doesn’t make my cerebral palsy an acceptable situation to be in. If tomorrow someone says that if I want, I can get rid of cerebral palsy, I won’t even blink before saying yes.

Disability for me is a confinement, and I will say it again, in the current situation, when you cannot overcome physical limitations with technology as you may be able to, after a few decades.

Take for example my power wheelchair. Compared to the time I didn’t have a power wheelchair my movement, and consequently, my independence, was quite limited. Although my disability is still overpowering, physically and psychologically, I don’t feel as disabled as I used to feel when I didn’t have a power wheelchair. My younger life would have been more enriching (and certainly more adventurous!) if back then I had a power wheelchair and places like schools and colleges were accessible (most still aren’t).

My wheelchair makes me independent as long as I have to move around on even ground or when there is an elevator. Even a single step can leave me stuck. Luckily, in an environment I live right now, there are ramps almost everywhere I need to go, but without them, I’m totally stuck. For example, I risk being run over by a speeding car or a bus because I have to drive my wheelchair on the road because the pavement is in shambles and consequently, totally inaccessible.

But I’m pretty sure that in a decade, I will be able to have a robotic chair that won’t require wheels and it will be able to climb stairs and walk on uneven ground, and even use public transport. My disability then will matter a little less than how much it matters now.

The more things I am able to do, the less disabled I feel, and vice versa. Hence, disability means not being able to do many things that people without a disability easily do.

Although not being able to do scores of things that people around you can easily do matters a lot, I think a person feels disabled the most when he or she is socially isolated. It is very difficult to make friends because, naturally, friends like to move around, which you cannot.

In college, my friends would suddenly make a plan to go watch a movie and to be polite, despite knowing that I would refuse, they would ask whether I would like to go or not. I would refuse. A contact point lost forever. Gradually they would move away. They would hang out with boys and girls who were not confined to a limited space.

I couldn’t go to the canteen because it was inaccessible and it was a major hanging out point. Another contact point lost forever.

No question of having a girlfriend because no girlfriend would like to simply spend time with me in the lobby of the college or stand by as I physically struggled trying to get in or out of an auto rickshaw, or profusely sweating after a small walk, or taking 20 minutes in the stairwell to go to my class, or not being able to impulsively go to the nearby market or a fast food restaurant, or do something totally goofy.

Yes, you can easily say that why not go with a girlfriend or a boyfriend who has a similar disability and I have no problem with that argument but this is only possible when in your surrounding environment there are other people with disabilities. This is not the case when you join mainstream schools, colleges and offices.

Small, unplanned activities, moments of serendipity, are the foundations of building relationships in younger days (even in older days) and when you have a disability, everything needs to be planned in advance. This is where disability hurts the most — the need to plan constantly even for trivial activities. I’m writing about this quite matter-of-factly now, but during those days, it used to be devastating.

So, personally, if you ask me what disability means to me, although right now I don’t feel as constrained as I might have felt a few years back without my power wheelchair, I think it is the need to plan everything in advance and even if there is small oversight, things can get out of control.

Due to my disability the most important things that I have missed are sense of spontaneity and independence, I mean physical independence. I just want to do something and I cannot do because of my disability. Everything needs to be planned. Every time, pros and cons need to be weighed before I can embark upon an expedition whether it is for myself or for someone else. To put it simply, everything is made difficult. Every small activity is turned into an “effort” or a “plan”. Even a small activity out of the way becomes something to be “proved” or “accomplished”. You cannot just drop in somewhere. No casual visits to your friend’s place. No casual visits to your relatives. You can’t even pay condolences if someone dies.

Other than that, I don’t think disability is philosophical, social or cultural, although these attributes have a big impact on someone’s quality of life. Disability is less about having a dysfunctional body part and more about not being able to perform activities that allow you to live an independent life without aides. Despite my disability if I can travel, if I can visit places I want to visit, if I can perform the activities that I want to perform, if I can be more spontaneous, if I can be alone without needing physical assistance due to my own choice, obviously I will feel less disabled (again, I’m talking about myself). One gets used to disability so after a while, it does not bother you as much as your inability to do things.

A few years ago, a friend of mine (multiple disabilities due to polio) lamented the fact that he would die without ever seeing uncovered boobs of a woman. Of course, he meant the uncovered boobs of a woman who would actually want to show her boobs to him due to sexual attraction. The way he was talking, it seemed to be one of the biggest regrets of his life.

During my younger days when I was desperate for a relationship with the opposite sex, I used to think that the biggest disadvantage of having a disability is one’s inability to get into such relationships, but my point of view has changed a lot since then. The biggest disadvantage, as I’ve mentioned above, is the lack of spontaneity.

Does disability mean just a compilation of things I haven’t been able to do? What about things I have been able to do due to my disability?

There are many. You can call my disability a big mountain that fell upon a river and then changed its course.

Disability made me sensitive towards my environment and towards other people. Going by what happened with and to my cousins, I would have ended up similarly without my disability. My disability forced me to pause and think about things. It made me think about myself and about others and about life in general. My disability made me chart a different way. It made me walk slowly. I used to proudly say that I don’t step on insects by mistake because I have to watch my every step.

There is no culture of education and reading on my father’s side and although some people on my mother’s side are quite educated, most of them are very, to put it mildly, self-centered, and consequently, wouldn’t have had any impact on our family. I would have ended up either in Punjab or Haryana, running a grocery shop and becoming a potbellied alcoholic. Even a drug addict.

My disability got me in contact with people of different cultures and different backgrounds through my special school, including people who encouraged me to read. Although no one knows what turn life takes, I’m pretty sure that the vocations of reading and writing would have been alien to my existence without those people.

Right now, at this moment (when I’m writing this), given a choice, I don’t know what I would choose, my current life in which I feel well-read and quite comfortable at writing and expressing myself, but with a disability, or living a life of total ignorance and without literature, and without an ability to write, but, with no disability. I know I’m assuming too much and totally neglecting the fact that even without my disability I could have been led into the life of reading and literature because life is full of infinite possibilities, but given the environment around me, I know there was a greater chance of my assumption becoming true.

Is it too great a price to pay? Who knows?

And what about my family, my wife and my daughter? Would they be in my life had I been a person without disability?

My daughter was born to us so it was not a conscious choice on her part in which family or to which parents she wanted to be born. So, it is of no consequence whether my daughter came to me because of my disability.

I don’t think my wife was drawn to me because of my disability. She was drawn to me because of my nature, and my disability was a part of me, which she chose to accept. But as I have written above, my nature is because of my disability and I might have been a totally different person without my disability.

I started writing this post when I came across a few updates from people with disabilities who claim that they are proud of their disabilities, and I wanted to express something. I’m surprised that I haven’t written much on the topic of disability till now. Most of my writing in the past few years has centered around politics, religion and other non-disability stuff. And of course, professional content writing for business clients.

I wanted to share my thoughts on disability, how I feel about my disability, and how my disability has impacted my short-term and long-term life. I know this is a topic for a book and not for a post, but I wanted to start somewhere. My thoughts here are incoherent but I’m publishing them anyway hoping that when it comes to talking about my disability, soon I will find a way to express myself without rambling.

I don’t care much about being politically correct. Things are just right or wrong and yes, sometimes there are grey areas in this is why we write, don’t we?