Spe­cial needs peo­ple can fend for them­selves

The Sun (Malaysia) - - SPEAK UP - BY DANIEL CHANDRANAYAGAM

IT AMUSES me to read Agatha Christie’s early writ­ing. Peo­ple were ap­palled if one had to work, rather than sip tea in the draw­ing room all day. If one did not be­long to the gen­try and deigned to work, one slipped down to the lower ech­e­lons of so­ci­ety and be­came part of the “work­ing class”.

Sadly, we all can’t sit in our draw­ing room to with­draw nowa­days. A cen­tury later, we all need some man­ner in which to ob­tain money. To that end, most of us work for a liv­ing, and if one doesn’t have to work for a liv­ing, one is very priv­i­leged in­deed.

When I say “all of us”, this in­cludes those of us who have spe­cial needs. All right, some peo­ple with spe­cial needs per­haps do not have the abil­ity to look af­ter them­selves or to earn a liveli­hood, but some are able to if they are equipped. From what I have heard from many friends and ac­quain­tances, how­ever, this em­pow­er­ment has been de­nied them.

One of my friends has an older brother who is autis­tic. I am not sure of the ex­act sit­u­a­tion, but from un­der­stand­ing, since young, his brother is prone to throw­ing tantrums which has ob­vi­ously es­ca­lated since. The par­ents have wanted to pro­tect and shel­ter the brother, hav­ing the ex­pec­ta­tion that my friend would pro­vide, both fi­nan­cially and emo­tion­ally, for the brother’s care af­ter their pass­ing.

My friend says that per­haps his brother could learn how to fend for him­self; per­haps he could be taught skills that would en­able him to func­tion in so­ci­ety. My friend, over the years, has changed from a friendly out­go­ing per­son to a bit­ter mid­dle-aged man, con­stantly ex­press­ing neg­a­tiv­ity in so­cial set­tings. I feel badly for him.

The thing that some par­ents seem to for­get, to my mind, is that they will one day leave their children be­hind, and who will fend for them then? Ex­pect­ing their sib­lings to look af­ter them is oner­ous. What kind of life could one have?

De­pend­ing on the ex­trem­ity of the case, peo­ple liv­ing with spe­cial needs might have the abil­ity to fend for them­selves. I know of a day train­ing cen­tre where folk with spe­cial needs learn skills to help them func­tion. From sim­ple things like wash­ing their own dishes and clothes, they learn how to use public trans­port, pho­to­copiers and other skills that we take for granted. This, of course, de­pends on each in­di­vid­ual case.

Some of them are earn­ing a liv­ing now. I know of one who is hired as a li­brar­ian in a pri­vate col­lege. Mean­while, my aunt has hired one of them as a run­ner for her of­fice. This guy ap­par­ently is bet­ter than most other run­ners: he makes a list of er­rands he needs to run; he ticks them off metic­u­lously; he does not stop for cof­fee or break­fast; he takes great pride and plea­sure in his work.

One other friend was in sim­i­lar cir­cum­stances but he has mi­grated to Canada. One of the rea­sons was his sis­ter needed tak­ing care of be­cause she ap­par­ently re­quires mild spe­cial care. Ac­cord­ing to him though, her cir­cum­stance doesn’t war­rant the ex­treme shel­ter­ing the par­ents give her. His par­ents have a con­stant ex­pec­ta­tion for him to look af­ter her, even to the detri­ment to his own mar­riage and liveli­hood. This re­ally shouldn’t be the case, in my opin­ion.

It’s a dif­fi­cult bal­ance, but I think there needs to be an aware­ness that we all have to live our own lives. If the par­ents have this ex­pec­ta­tion of their children to look af­ter their sib­ling with spe­cial needs, imag­ine once they pass on and the sib­lings do not ful­fil this ex­pec­ta­tion. Imag­ine if the sib­lings, fed up with a life­time of this, de­cide to put their sib­ling in a home, or worse, aban­don their sib­ling with spe­cial needs to­tally. What kind of favours would the par­ents have done to their children?

Daniel free­lances in writ­ing and fit­ness train­ing, and has a deep pas­sion for health, fit­ness, sleep and travel. Comments: let­ters@the­sundaily.com

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