Category Archives: Disability

Disability in literature, mythology, folklore and films

Captain Hook

Have you read Of Human Bondage by Somerset Maugham? The central character of the novel is a young man with a club foot. If you haven’t read this book do read it not just because it has a character that has a disability and has something “different”, it is a story that tells you how failure and success, sadness and happiness and intelligence and stupidity go hand-in-hand and despite that, we move on. The disability of Philip Carey affects every part of his life and it doesn’t allow him to live his life the way he would have liked to live, but that is not the central theme of the story. These are the problems that he has, but aside from these problems, the major problems that he faces are quintessentially related to the volatile human nature that is extremely unpredictable. He can be mean and judgemental just as people can be mean and judgemental to him. His disability doesn’t necessarily make him sensitive and if he is sensitive compared to his friends and colleagues, it is because that’s the way he is and it has got nothing to do with the way he walks. The greatest thing about this novel is that Philip doesn’t have to prove anything because he has a disability. He just tries to live his life the way he wants to live irrespective of the fact whether he succeeds or not.

These thoughts were triggered while I was reading this blog post that was published on the occasion of the Blogging against Disablism Day. I never knew that the word “disablism” existed, but it has a nice sound.

The author rightly says that people with disabilities are often depicted as vile, scheming and demented characters in various works of fiction:

There are far too many books out there that portray characters with disabilities and chronic illnesses in ways that are deeply destructive and have a seriously negative impact on the understanding of disability in general. However (and this is a big however), most of these books are clearly written by authors who have not considered their portrayal at all, and who clearly fail to respect experiences that are different to their own. These are the authors who fail to realise that disabled people are also, actually, people. These are the authors who consistently portray disabled characters as, for example, useless and/or monstrous. But these aren’t exactly difficult tropes to avoid if you treat disability as a genuine character trait, part of the full colour of your character’s depiction, rather than an easy symbol or device for your plot.

This problem arises from the fact that disability is not mainstream. You don’t see disabled people roaming around in the streets, catching public transport, getting into arguments with other people on the street, fighting elections, watching movies, doing shopping at a grocery store, visiting prostitutes, getting married, becoming successful professionals, going on dates, going to office and doing all sorts of things that people are seen doing matter-of-factly. Coming across a person with disability is always a special occasion.

Whereas situation in the comparatively developed countries might be improving and you may come across persons with disabilities more often than not, in less developed countries like India, they’re mostly seen when they are struggling with basic necessities. A visually impaired person is totally at the mercy of someone who can see especially at public places like roads, stations, stairwells and markets. A person with physical disability is often seen being helped with climbing stairs or walking across the road or something like that. Worse, you see disabled persons begging. You never see a disabled person simply going on with his or her life without having to bother about getting some sort of help. This is the problem with the environment, the infrastructure. We haven’t reached a state when public places, offices and institutions are made in such a manner that they can be universally used rather than just by people who fit in a conventional box of able-bodiedness. Once this happens, we will see persons with disabilities depicted just the way they are in literature, hypothetically.

Another problem is that we take visual cues as behavioural patterns. We have a very strict definition of what is pretty and what is not, what is beautiful and what is not and how good people look and how bad people look. For example, in most of the TV ads you will never see an intelligent person taking intelligent decisions despite being on the heavier side. He or she is always shown fumbling, unsure, doing stupid things. And then there is this slim, fit-looking, preferably taller person who has a very confident expression about him or her and takes the right decision at the right time and solves a problem that a person on the heavier side does not seem to be able to solve. It’s not just shape, even the colour matters. A darker person is shown to be under confident and not doing much in life. And then he or she suddenly uses a face cream that makes him or her fair and lo and behold! The world is nothing but a plethora of successes and happy moments.

This stereotyping is also extended to ages, social backgrounds and professions. Younger students are always making fools of their teachers and professors. In mobile phone ads, people in their 40s and 50s are often shown fumbling with their gadgets while their teen kids are shown totally cool about the latest features in their mobile phones.

Recently I saw an awareness ad in which a person from a socially disadvantaged background is shown to be gawking at a good-looking girl in a public transport vehicle. A college going well-off-looking yuppie sort of a youngster notices that and comes stands between the girl and the gawking guy. The stereotypes would have totally gone topsy-turvy had they shown a well-off guy gawking at the girl and the dark looking person from a socially disadvantaged background feeling offended and coming between the girl and the guy.

So I think more than disability, it’s the perception that is at work. You want to show a bad person or an ill-mannered person in the visual form and because you’re not very sure of your writing abilities, you use disabilities like a crooked eye, or a stuttering way of talking or walking with a limp.

As I have mentioned above, to a normal (read able-bodied) person disability is quite alien. It’s like for the directors of art movies, especially in India, depicting poverty used to be an exotic activity. That is why people like Satyajit Ray would make voyeuristic movies about how poor people live, how they dress up, how they eat and procreate. Then these movies were shown to foreign audiences because they had never seen such glaring poverty and the behavioural attributes attached to it. That is why when there is a disabled person in a movie, the highlight is his or her disability, and not what sort of life he or she lives.

Even in Indian mythology and folklore, disability is used to exaggerate villainous as well as saintly characters, or they are used symbolically. In Mahabharata, you have a limping uncle (Shakuni mama) who is the most scheming person in the entire plot. Then you have the visually impaired Dhritrashra who can see nothing and he is totally indecisive as well as impotent. Ashtavakra (having 8 physical deformities) in Ramayana had to prove his worth by showing exceptional intelligence. The jealous and evil uncle of Heer, Kaido, also had a limp and walked with a stick, but his character is a bit complex because his evil and jealousy originate from the raw deal that he gets from the society for having a disability.

Anything that is not ordinary becomes a stereotype, and I think in most of the stories, disability, whether depicted in good light or bad light, is used as a stereotype rather than making a statement. So when a writer writes about a villain who has a limp, he or she is not trying to say that people with limps are bad, he or she usually just wants to express it stereotypically. I’m not saying this is right, but this is how stereotypes are used.

Will this change once disability becomes mainstream? I don’t think so. Things will surely improve, but do you really think people who create stereotyped characters using race, color, regional accent and body shapes will be open-minded enough to depict persons with disabilities in a non-stereotypical manner?

The importance of regular exercise

I hated exercising as a child. It always meant painful stretching, being isolated from friends and cousins, and occasional beatings. I’m not one of those blaming-types but my father and my grandfather contributed a lot towards my disenchantment with exercising. They didn’t have the required patience to assist a kid with cerebral palsy keep himself flexible enough. After just a few tries, they would get frustrated and that would result in some good old-school venting out.

I liked physiotherapy in my special school even when sometimes it was quite painful. The therapists knew that I had to go through tremendous pain each time I exercised so they were never angry or pissed off when I resisted. They simply forced me to follow a schedule. When I was young, physiotherapy was mostly physical, they had no idea that for the muscles to relax, the mind needed to be ready. Later on pre-therapy relaxation became a part of physiotherapy but by that time I had left my special school and joined a mainstream school.

After leaving school nobody paid much attention to my exercise. My parents used to bug me on and off whenever suddenly they realized that it was difficult for me, or instance, to get into a cab, or get out. Other than that, normally they wouldn’t bother, and I preferred that way.

In my late teens I became conscious of how I looked, although I knew beyond a certain point I couldn’t improve my appearance. I would lift weights, I would do push-ups and situps and I would go on long walks to keep myself healthy. I wasn’t regular, but for the next 10 years or so, I was exercising or doing long walks at least 6 months of the year. My focus was, of course, misdirected. Whenever I exercised, my 2 motives were: having good shape for my upper torso and arms, and building lots of stamina for walking.

Although both these aspects benefited me in the long run, they also made my body stiff. My problem was moving my limbs away from my body, not towards my body, and when I was lifting weights, I was always moving my arms towards my body and that was counterproductive because my body already had this tendency of coiling every limb inwards.

The benefits were that I’m still healthier compared to many of my friends with cerebral palsy, and my 10 years of an intermittent physical schedule also made my bones stronger. People with cerebral palsy have this tendency to develop osteoporosis, so if for nothing else, one should exercise just to avoid this problem.

Then I got married and got busy with other pressing needs of life and somehow, regular exercise got relegated to “O yes, I should exercise”. Even walking got reduced to as little as maybe a month in a year. After my power wheelchair, even indoor walking ceased.

All my work involves typing (computer keyboard). I was doing so much typing that by the end of the day my shoulders would ache because when I type it’s not my wrists that move up and down, but my arms. That was not the only problem; just because I use two fingers to type (middle finger of both hands) my typing speed wouldn’t go beyond a particular limit. I started using a dictation software. I can easily claim that if I was typing 20 words in a minute, now I could type 100. That was a big leap. Soon I stopped typing. I only typed while doing programming.

So most of the time my right arm would remain in this position:

arm-position-1

After a couple of years my arm got fixed to that position, and it became difficult to even clip my nails. While attempting to charge my phone, keeping the phone in place on the table with my right hand while plugging in the charging pin would turn into an ordeal.

I do stretching everyday in the morning these days, both legs and arms. When I had just started exercising I could raise my arm only this much:

arm-position-2

and that too with lots of effort and pain. Now I can bring it this much:

arm-position-3

I’m sure in 3-4 month I can take it beyond 90 degrees but my objective is not that. Regularity is my main objective. Rather than worrying about how high I can take my arm in 5 months, my objective is to keep on exercising for 5 months without losing track and without getting discouraged.

With a permanent disability, especially when you are dealing physical disabilities at multiple levels, keeping your motivation level up can be difficult. It’s not like you are exercising to lose weight or something. You are exercising just to be able to hold your spoon or type that next sentence on your computer. It can take months to notice even a difference of a few inches of flexibility.

Another problem is, each time you stop exercising for a few months, it’s back to the square one and by the time you start again, your muscles have atrophied. You may also face resistance in the beginning. You may feel stiffer and this may permanently set you off.

This is why I’ve started following my wife’s advice, who was an athlete in her college and trained under a professional coach. She always says that listen to your body and never over-stretch. For instance, if you can stretch your arm just 30 degrees, don’t start thinking of stretching it 90 degrees. Just focus on 40, and then 50, and then 60, and so on. This way your body gets to adapt to your exercise routine at its own pace, and there is also no initial resistance.

Coming back to not setting time-bound goals when exercising. Every body has its own pace and when you start thinking in terms of this:

arm-position-4

you may either injure yourself or get highly de-motivated if you don’t succeed.

Instead, focus on regular exercise for the next two months, and then, for the next two months. More than how much you exercise, focus on regularity, even if it is just for 15 minutes. It’s a proven medical fact the your body reacts to movements. So whether you can feel it or not, when you move your arms and legs new cells are building and your muscles are getting stronger. When you stretch regularly your joints are stretching and moving your arms and legs is becoming a little bit easier, whether you realize it or not.

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.