Please don't stare at my sister

Most people get very uncomfortable in her presence; some turn away while others just ignore her.

Ikhlaq Ahmed May 15, 2013
My little sister is well into adulthood. Mentally, however, I’d say her behaviour is that of a particularly sober and socially adept five or six year old.  This is due to a combination of Down’s syndrome and profound hearing loss (which has obviously been a hindrance to her development). It also means that she cannot speak and relies on a slightly limited sign language vocabulary.  

As she’s the baby of the house, we all do as much as we can to spoil her. One of my pet activities with her is frequenting coffee shops and restaurants. She loves the whole routine, dressing up, driving there, nodding to the parking attendant and the waiters, picking up a newspaper on the way to her seat (not to read it, of course, it’s all part of the act), carefully pretending to consider the options on the menu and giving nonsensical orders to a somewhat bemused waiter. After eating, the whole routine starts up again, this time in reverse order.

Because of her limited communication, while she will make occasional small-talk with me, if someone else is accompanying us, they are treated to make-belief conversations; basically just sounds, coupled with gestures she has seen other people make while talking.

By the end of the outing, she is generally satisfied and goes home happy… except for one small thing. This is where I have a minor complaint to register against my fellow human beings, especially the educated one who frequent these establishments.

The purpose of the entire activity is that it makes her feel grownup, doing grownup things, surrounded by grownup people and feeling accepted in the fraternity. This last part, unfortunately, is where things tend to fall away a little bit.

The fact is, while we are all taught that it is impolite to stare, this rule needs to be revisited and updated when dealing with people such as my sister. Understandably enough, most people get very uncomfortable in her presence. They don’t know how to act, and as a consequence end up trying to ignore her completely. The more polite ones will turn away, the less ones will not bother. As far as she is concerned, neither is acceptable!

For any other person, perhaps this behaviour might be acceptable. Most people would not ponder long over such an exchange. Frankly, for a basically anti-social person such as myself, it is even desirable! But special people need special attention. By being treated in this manner, people who are already very self-conscious about being different from others are being sent the message that others find it undesirable to even acknowledge them and that they are unwelcome in society.

As educated, civilised and caring members of the society it is our responsibility to adjust our behaviour such that we are not making others, particularly those requiring our attention, uncomfortable.

Perhaps the biggest hurdle facing people with special needs is social acceptance. By this, I do not mean the misinformed people who regard such people as some sort of source of shame. While that attitude is an issue in itself, a much more prevalent problem is the lack of existing social etiquette when dealing with people with disabilities (specifically in the case of mental disabilities).

Special people already lead increasingly isolated lives, especially as they grow older and the differences between them and their peers become starker. Furthermore, they usually face certain constraints that inhibit their ability to socialise. This often leaves them starved for interaction. One result of which I can see in my sister holding endless pretend conversations with imaginary people.

In this context, sending her unwelcoming vibes can be a particularly cruel punishment.

I do not want to get bogged down into how difficult the lives of such people are. This post isn’t about that. This is, in fact, a self-help guide for you, dear reader. I know that most of the time people do not mean to be rude or cruel. They don’t even realise what they are doing. For these people, this is to enhance your knowledge – now you know what you are doing. Stop it!

On the other hand, there are those poor people who find themselves ill-equipped to deal with a social situation they haven’t been trained for, and shut down. For these people, read on, your problems are about to be solved as well.

I should also add that there are also occasionally people who are able to deal with my sister perfectly naturally. These are usually people who are confident and socially interactive. But the numbers in this category have been dwindling for a long time now (perhaps due to an increasingly generally despondent and more selfish culture).

But I digress, the real point of this article was to inform the reader about the minimum he or she can do when in the vicinity of a person with special needs. Here it goes – smile! For some, this advice is ridiculously simple. For others (such as yours truly) it is spectacularly awkward. I am not a big smiler. It seems like an unnatural thing to do and requires actual conscious physical effort. But believe me, it absolutely worth it.

For first-timers, let me allay your fears. Nothing bad will happen. The entirety of your being may be against it; telling you to just let it pass and not get involved. But I assure you, the entirety of your being is wrong! The world will not stop spinning, there will be no meteor showers or tidal waves; there will be no bad consequences whatsoever. But you will have to overcome your own insecurity!

Secondly, what’s waiting for you as a result will more than make up for the physical strain your lips are having to endure. Whenever I visit my sister’s special school I make this effort to smile and nod at any children I come across and, invariably, what I get in return is absolutely magical. It usually the biggest, warmest, most genuine, and most beautiful smile you can imagine. It really is enough to make your day, no matter how much of a curmudgeon you may be.

Also, once you get past this initial inhibition and are comfortable, you may progress further. Nod at special people, wave to them on the street. Go crazy, I assure you, you will not be disappointed! These are, of course, optional extras, but the smiling is compulsory.

Although one should practice the same courtesy with all children, even if we don’t, most of them will grow up pretty soon to be able to ignore children themselves; special children usually don’t get that luxury.

Obviously, not everyone can devote their lives to making other people’s lives better. We cannot all be social workers and paramedics. However, I do strongly believe that such basic common courtesy is the responsibility of all responsible citizens in a society, regardless of whatever else we may be doing. As cliché as it sounds, a smile costs you nothing and makes someone else’s life much better.
Ikhlaq Ahmed A Pakistani citizen who loves his country.
The views expressed by the writer and the reader comments do not necassarily reflect the views and policies of the Express Tribune.


American Desi | 11 years ago | Reply Honest and candid. Somehow we human have quite forgotten what it means to "Be Human". My regards, blessings and well wishes for your sister as a brother.
Muhammad Sohail | 11 years ago | Reply worth reading material, you have really done a great job having shared this invaluable article! I am sure it has helped me a lot more knowing how to treat these special angles!
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