People with disability: do we care?

Like most nations, Nepal is a country that prefers to ignore what it doesn’t like, and it doesn’t like disability. For we live in a society where people believe in a number of untrue things. Among the many things, we believe we’ll never become disabled. I know I did. For a start, young people are known to believe they are invincible. And we think we’ll never be the 1.94% (2011 census report), it will always be someone else.

So it concerns the general population no more than choosing candy from the remaining change the store owes them about how rubbish the government disability provision actually is. If we did care, there’d be more fuss and discussions about how little the government provides, how difficult it is to access any provision, and how humiliating the process can be.

The local “chiya pasal” would be abuzz with about how many of the disabled people live in poverty, in disgusting conditions, and how difficult it is to access the workplace if they are lucky enough to have work, and how rubbish public transport can be because these informal discussions often work to raise awareness.

There is also a deep-seated belief that medical intervention will fix almost anything. People frequently seem surprised that doctors were not able to solve my “health problems”. Trust me when I say I have been to far too many doctors for my own liking, yet strangers find it fascinating to recommend all kinds of new treatments and healers to me.

We belong to a country where our religion talks about rebirth and karma of our past lives. So it is of no surprise if someone said out loud that disability was the very fault of the person. Others blame the parents for bringing a disabled child into this world. And there are those who may think people with disability shouldn’t have access to affordable transport options, health care, education and training for sustainable careers at the taxpayers’ expense.

I became disabled due to an illness in my late teens. It’s been years now, yet it still amazes me how little other people are willing to adjust so that we may live like them, for once forgetting all our disabilities and only focussing on and celebrating only our abilities. I recently participated in a training camp, which was held on the top floor of a building, no lift or escalator. The world often seems pretty unfriendly to the people with disabilities. So many things could be easily adapted to fit our needs in this world of ours. What we should remember is that it’s the cities that are disabled not the people with disabilities.

We distinguish disability from ability as black and white. People generally think anyone who can’t walk or has a physical feature missing is disabled, but the many shades of grey confuse them. A friend once told me the way “I simply forget my walking aid” (stick) and walk or exercise (which I frequently do), people would think I was an actress. Some even go further and think I’m some kind of “benefit” fraudster. The fact is I can walk a lot with the help of my walking aid, and without it for 15-25 minutes before fatigue sets in, and one foot of mine begins to kick the other — in simpler words, the cerebellum, or the part of our brain that controls balance in all of us, is not fully working in me.

What we so easily tend to forget is that disability is varied. Invisible disability, or hidden disability, is an umbrella term that captures a whole spectrum of hidden disabilities or challenges that are primarily neurological in nature and are not immediately apparent. Invisible illness is, in general, difficult for people to take in. This is compounded by our obsession with ‘fakers’. Yes, people do fake sick days, but when you haven’t been faking, and you get treated like you have, it really sucks.

I have discovered that acquired disability is very often accompanied by isolation. We often see on the social media ‘inspirational quotes’ like ‘cut out the negative people in your life; find those who energise and inspire you’. I fully understand cutting out an abusive, unsupportive friend, but these days many people will happily leave by the wayside anyone who’s inconvenient to meet up with or anyone who is feeling depressed.

I’ve heard many a story from the chronically ill of their friends just ‘disappearing’. Why do people do it? Surely it must link to with what I said earlier about how we believe it will never be us in that position, and how we believe that it is somehow their fault.

Many of the people with acquired disability suspect some friends disappeared because they are uncomfortable with the idea it could happen to them. We want to be around happy, shiny people in a bright, perfect world, just like in the adverts. Many people will admit they fear death and so just don’t think about it, and I suspect much the same attitude is taken to disability. But we urgently need to face up to it so that we can be there for our disabled relatives, friends, employees, colleagues and neighbours. Learning to live with a physical or mental impediment is hard enough as it is.

I write about myself not for sympathy but to raise awareness and understanding. “We learn ourselves, we understand, we teach others, they understand, and together we have hope, we have recovery”. This is a quote I heard years ago as I lay in the hospital bed. I feel it fits here perfectly for isn’t life to be appreciated and not shunned simply because you have a disability? So do you really care?


A version of this article appears in print on June 21, 2019 of The Himalayan Times.

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#my story

 

There are numerous benefits of education and equally many critics exist too but that’s the discussion I will gladly leave out today. Today I will only acknowledge the good of education, especially in my context. At the time I fell ill and realized I had now to live with a disability; I had only completed 12 Std and was preparing for the medical entrance examination. My confidence, self-esteem, self-image was all time low. Continue reading

Tired but trying

They say “what doesn’t kills you makes you stronger” but they are so wrong what doesn’t kill you just does not kill you and that may be all you get. Except sometimes what does not kill you maims you, cripples you, leaves you weak and makes you angry, sad; feel cheated.

Some things that didn’t kill me did come so close that it’s still damaging. They didn’t all make me better some made me worse and bitter. Isn’t that okay, cant something just break you? The world wants us to believe that admitting defeat makes us weak. However, you just can’t be positive all the time we may be angry, frustrated, sad, annoyed, scared, anxious or any of the numerous negative feelings. Having feelings does not make a negative person. It only states how human you are. Continue reading

i am you – a page from my journal

Please stop looking at me like that your gaze stab and bleed me, it hurts so bad but I know I can’t put my thoughts into words or explain anything to you before I get all rallied up in emotions, you that can understand it all but don’t want to; you that are the society of which I am a part too.

I understand you are sad to see me in such a sorry state but are you “sad”? Isn’t it acceptable anymore for a person to fall sick; being vulnerable is what a human is I am a human seems you are don’t know or accept the sad part of reality; makes me question are you really that delusional. Continue reading

Dignified & Correct terminologies- words are powerful

Words have an immense power they can easily make or break a person. A word is very powerful and we often underestimate its power.
Of late I have been reading a lot of blogs describing people with disability as “differently able” which angers me a lot because I want to be referred to as person first not different because I have a disability. This is my opinion and opinions are not facts that can’t be proved wrong. Continue reading