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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girl coverd in color staring blankly ahead

The Queer journey of life

 

Life was simple then. There was no need to be happy or sad after all we were all just kids. Friendship knew no boundaries – rich, poor, caste, colour or disabilities. A mere rupee was not just a rupee but the cause of smiles worth millions. A building or a tree was just not what it seemed or intended for, maybe it was a haunted castle, a witch or an unconquerable mountain everything depended on how vast the imagination was. A rustle of the leaf could be the beginning of invention of horrific stories and proven facts would be mostly denied on a whim. Everything the grownups did was weird for they were stuck up weirdoes. Everything and every job were awesome, all was easy and attainable. There was no care; life was easy, fun for we were kids then unknown to what the future brings. Continue reading

FIRST RAIN

Dark clouds took over the clear blue sky, with every passing second it became darker.

But the attention-grabbing factor were the winds that began to sweep up the dust that lay everywhere in cracks on walls, in between leaves of trees, among the flower petals, on inaccessible  tin roofs, on  paved roads; invading every little space available and into the rooms if one was too late to close the windows. All humans scurried indoors. Looked like a huge vacuum cleaner had been switched on by gods.

In a couple of hours, the Rain began. Continue reading

i belive but do you?

 

I believe in Fairy-tales, on fairies, on magic on monsters………………….

I am naive you may think, not accepting reality. I think so too! how dare I believe in something totally spun out of imagination. They for sure are children stories and I am an adult, how ridiculous would it be if a twenty-year-old told you they still believe in Santa wholeheartedly despite knowing the truth since he was 3 yrs old. Continue reading

imaginary “real” friends

 

When I held it in hands I could not believe it nor could the fuzzy, funny feeling in the pit of the stomach stop and as I opened it a familiar air engulfed me …a feeling of warmth tugged my heart in this brutal winter air. Long-lost friends met again, going together on an old route of laughter. Continue reading

#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

Every dog has its day

In Nepal, the festival of light also known as Diwali is called Tihar. Similar to other Diwali observances, lamps are lit at night during Tihar, but it also has its observances that make our’s so unique. The festival of lights celebrates the triumph of light over darkness, of knowledge over ignorance, and the dissolution of barriers that separate humans from the authentic experience of the world. Nepalese Hinduism is unique in dedicating the second day of Tihar, Kukur Tihar, to the worship of dogs. 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

all about me

 

That’s Dorian Grey?  It’s the 100th time now, said my friend with very apparent exaggeration and a genuine look of disgust. This, however, was a ruse to recommend me the latest book she was reading, a love story, “Me before you” by Jojo Moyes. I don’t mind rereading and genres don’t concern me. Hence I thought I’d give it a chance but I don’t trust her taste therefore when it wasn’t available for free on the world wide web and with talks going on for turning it into a movie I skipped buying it telling her I’ll watch the movie and telling myself I’ll hold on to my money for now.

That was in 2013 and I had forgotten all about it until one fine day in 2017 the internet informed me of the movie and I watched it. 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

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starry slice of heaven

The wind whispered sweetly into my ears as if to remind me of the drunken lull of darkness. Hark! I did. I always do. Give in to nature. Find it incomprehensible that most people do not take some time out for themselves.

For there is nothing like gazing up at the boundless sky, engulfed by a star-studded blanket; when the moon lets down her veil, revealing the beauty that can make any girl green with envy Continue reading

a lesson from Hibiscus

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White Hibiscus

 

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Red Hibiscus

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What do I call it? red or pale yellow Hibiscus

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Pink Hibiscus

 Same family, so many colors yet they are all the same, these are from my garden. Did not take a lot of work to see such pretty flowers, just a few branches to plant.You think it will die after all it has no roots just a branch stuck in soil and it does begin to wither but that is just the beginning of a new plant a rebirth you may call it and now defying death the flowers are blooming. 

more about Hibiscus

Inspirational porn

A term coined by disability right activist Stella Young, a comedian, writer, and journalist who died at the age of 32. Stella who also happened to be in a wheelchair, automatically turning her into an inspiration for all of the humanity. As the society has a habit of labeling people with disability especially visible disability into “inspiration”.

There is hardly a day that passes without seeing an “inspirational post” on social media whether it be a person on stilts running, someone painting with no hands, surfing without legs or any of its variations with words like, “if he can do it so can you or the only disability in life is a bad attitude”.
Would you be inspired by a convicted murderer or by an image of a Paralympics champion certainly the second option sounds more tempting but what would you do when they are the same person, Oscar Pistorius a Paralympics champion and a convicted murderer? To celebrate and call someone an inspiration just for breathing and staying alive since they are living with a disability is wrong on so many levels without actually knowing about the person. Implying that disability is a sorry state to be in, teaching the already marginalized group that only mediocrity is expected of them they need no achievements to be celebrated for their image already is.

The society has reserved a role for the person with a disability, of inspiring humankind and has unknown to us enforcing it with every passing day. One of the evilest man to have lived Dr. Joseph Goebbels has said, “Repeat a lie a thousand times and it becomes the truth”. Unfortunately for us, there is more truth in the statement than what we would like to be, we live in a world whereby different means of diffusion of thought exists and it has become ok to objectify one group of people for the benefit of another group. “You are inspiration” a person with the disability has heard this several times young or old all because we believe in a lie that living with the disability makes you exceptional, it does not.
Inspiration porn is when people with disability are called inspirational or brave for doing all the things that the majority of the world does, objectifying disabled people. It’s a problem because it assumes that anyone with a disability must have it so much worse. Using the image of a person with a disability to make the ‘able’ feel good about them, to motivate to work hard, exercise or whatever, except disabled people aren’t objects; they are people. Normalizing disability through greater inclusion and repetition of the positive image in the media may be the answer to be seen as equal but different. Learn to celebrate accomplishments and talent because life revolves around living, not around disability.

Who am i?

A thread of memory

Since the time I remember the “big red tree” was always there, where the gate to my house should have been. Those were nicer times of bamboo fences that automatically adjusted itself to the growing width of the tree. Eyes of the childhood I just saw the blossoming red flowers of the tree hence the name. Continue reading