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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on and off topic

More often than not I have a concrete outlook of what I want, armed with the rough draft in my notebook that I wrote before I sit in front of my laptop to type. The rough draft makes sure I don’t stray from my idea just work to make it better with every word I add or subtract. However for a couple of weeks, I get up with an aim to write but all I end up doing is staring at my open notebook and empty, blank screen of my laptop.

Which I have come to know is very harmful to the personal well-being and for the thing called pride. Going off topic, a very important person of my life told me and I agree fully that pride is a positive emotion whereas jealousy and vanity are negatives and for sure should always be kept far. Doing nothing is bad but being made aware every second by the blank word document is worse. A point comes when despite doing everything to get motivated you can’t seem to do the task you should be doing for your own self. When I feel disheartened I begin to question my ability which is not a good sign because I would be sadder and the cycle will continue on and on. I have a list of topics I would like to write on however words have failed me recently.
Again off topic, I have a small room 11*6 feet when I am uncertain or disturbed, with music playing; I

  1. reorganize my room
  2. reorganize my almari (wardrobe )
  3. refashion my clothes
  4. make art and crafts.

I just need to do one of the above like by reorganizing my room I somehow reorganize my haphazard thoughts. What do you do to help the mental or emotional aspect of yourself??? Just doing one of the above has always been enough to stabilize and push my thoughts back on track and break through the wall of procrastination but not this time everything is done yet I can’t seem to perform my day the way I want sometimes I just think I am lazy then again I quickly dismiss that stupid negative thought.
Writing is very important for me I cannot emphasize on this point enough. It is not just as a way of self-expression for me but my identity, a source of pride and happiness for my family after I became disabled my life took a completely different path and writing for me became that shining pearl in the setting sun, one was never enough.
Again going off topic but does this writing have any topic, thank you for reading this nonsense as I thought just now to dump all my all my clothes from my almari and rearrange it again.. maybe I’ll invent a new me.

Hans Boodt, mannequin,wall,faces,quote"people with disability are not props for your philanthropic posts"

People with disability, are not props for our “philanthropic posts’’

 

When I became “disabled” due to an illness after proper 20yrs of living a life of privilege ability my life and not just my life alone but the life of my family changed too. While I am on the very difficult path of self-acceptance, my father is not okay neither do I think he will ever be after his daughter’s life took a complete 360°turn.

In the early years of my disability I decided to volunteer in an organization that houses people like me, the only organization here that takes care of their needs and provides training and education but the stark difference is that they are worse than me physically, mentally, emotionally and economically; this being the only life they have known. Continue reading

graffiti,wall,old-man, child, girl,quote "on his blindness"

Charmer of Words

 The one beauty of writing is rather than painting a full picture with words and telling a tale it lets the Reader imagine. There is always room to add and subtract for now the reins of interpretation is no longer remain in the hands of the author.

  With each new reader it becomes more than a beautiful  just a combination of words or just another story the author intends to tell but with each reader it takes a different form, it tells a new story; story said not just by the words but by the emotion of the unwritten words which just suggests their presence.

 Maybe that’s why written words never grow’s old; it only begins to tell a new story. 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

The Hiprocacy of judgement

“But you don’t look disabled.”

Both baba and I stared with an apparent look of surprise, disbelief, and sadness at him I was shocked with loss of words and baba was quiet too. Some people think saying nothing is a sign of approval, he did the mistake too as he launched into the topic of “well-meaning” advice as I controlled my angry tears from falling. Continue reading

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Saraswati Puja and making friends

Will you be my friend? Let’s play together or else saying can I share your toys; I gather that’s how you make friends as a child I never had to do it consciously because no introduction or formality was required of “us” living in the paradox of insider and outsider. Though the friendship of such kind never existed beyond that of playmates for which I am entirely to blame. Nonetheless, I never had a shortage of friends. 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

gender perspictive on development-a thought

Simone Lucie Ernestine Marie Bertrand de Beauvoir a French writer, intellectual, existentialist philosopher, political activist, feminist and social theorist. She wrote in her book “ The second sex”  “….one is not born rather becomes a woman …it  is the civilization as a whole that produces this creature intermediate between male and eunuch, which is described as feminine “ 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

dead

 

It’s always hard trying to come to terms with it, once a person is born Death is decided we know the truth of the mortal nevertheless we cry,  grief,  tears it’s the love we give but the other can’t receive in spite knowing it all each Death we see is difficult even if its 100th   we’ve encountered.

 We ask questions beginning or with sentences ending with why as we struggle to breathe. We often weep in despair, silently: sometimes offering ourselves as the replacement because a life without them is unimaginable. A heart raging in the fire of questions with tears that hurt with the flow; later the same heart tries to console. 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

weaving imagination

Poetry brings within its compass everything nature, weather, beasts, beauties, and every realm of imagination. Though not everyone is a Shakespeare or a Milton, I believe, everyone has a poetic mind, a penchant for rhyme and rhythm – it’s only a matter of time before it manifests in one form or the other.

Poets are the architects of beauty and melody, expressed so eloquently through their beautiful verses. A poet weaves magic and makes the world gaze and wonder. Poets have been deemed eccentric and escapists. However, the likes of William Butler Yeats, John Milton and William Shakespeare and every poet have proven that no one can portray as vivid a picture of life as they can. Continue reading