letter from Portugal

 

 

João Coelho (Portugal) is a writer-activist  who is working his best to make sure the voices of the people with disability is heard and not forgotten, please do check out his site  https;//www.portugalcomdeficiencia.com/ 

he wrote on for me and this platform for which I am eternally thankful, thank you João.

I’m 46 and have a disability since birth. Since my early teens, I’ve noticed that I was not alone – we were a kind of a crowd, a very large crowd of different people, with different attitudes towards being physically different. Well, the main questions, from that very specials moments, were nothing more that something like this: what can we do about finding a disco with no stupid disco bouncers, some drunks boys and girls who could not notice that we were sit on wheelchairs and, by the way, enter the dance arena avoiding a fucking stairs? How can we date without being caught by reality? Sometimes, when I felt I was among equals, things were going just fine. Well, they were not so bad at all, and maybe not really fine, but we were like… OK. If we weren’t, beer would help, anyway.
People grew up. People got separated. That’s how it was with this bloody life we live. Today the least I can say about disabled people, the ones I’ve tended to let escape to the mist as well as those who doom to think and know a little bit about contemporary History and civil rights movements, is that we do not exist as a group.
As we all know, Europe is living a pandemic. Portugal, obviously, too. I am not sure if we all are aware of this – even the Europeans – but the European Union is nothing more than a financial link between countries, made by weaker and stronger links. Portugal is a weaker one. Forget Education, Culture, forger Ethics, forget, sometimes, food. We all, Portuguese citizens, are a consequence of that week link. EU has a kind of a queen and some vassal princes, and some of those princes just have to sit and listen. That’s how things are here.
Besides that, God exists and not all things are bad. We are about one million disabled people, ten percent of the Portuguese population. And, as fas as I know, we have a public health system, supported by our own taxes and “hidden contributions” (I mean, that sort of things we can notice we are paying when we receive electricity and water bills but we can´t perceive what we are paying) but – who cares – we pay those bills anyway because we need to take a bath sometimes and cook and eat sometimes and so on.
The big picture goes like this: we live in a perfect European system, a kind of an earthy heaven. But we don’t. We’re dying, and we don’t have any data about it. We’re avoiding going to hospital, because hospitals are more COVID-19 positive than a sick lung. What could be worse than wake up and smell death, when we know our best friend died at night because doctors were more aware about next COVID ambulance arrival than his chest pain?It was not COVID, it was a heart attack. But that’s OK, because a disabled citizen costs a lot more to public health system than a healthy one (till being ran over by a truck or need some BLS in front of a disco because he or she couldn’t get so much ‘shots’).
We’re dying. Slowly dying. But that’s OK, because no one cares about who get the ventilators first. No one cares if you get stuck in the elevator because COVID is data, and you’re not. We still do not have a bloody COVID-19 toolkit officially issued by public authorities because there’s no because. Because we’re not still a number, we’re disposable, recyclable, we’re part of the problem and not part of the solution.
Fortunately, some of us are waking up and understanding than western culture needs to meet eastern culture in a way that we can both teach each other from our own experiences. We’re not guinea pigs and that’s why we should not die, but we can live a bit longer if we can see there’s future across borders.
In a certain sense, right here right now, it seems like we’re COVID-19 immune. But we’re not.

João Coelho (Portugal)

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.

Illustration: Ratna Sagar Shrestha/THT

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?

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

Do clothes introduce you?

Do clothes introduce you?

Truthfully, we all judge people and this fact cannot be denied. The only difference is how we choose to see others, through the glasses of positivity or through the glasses tinted with negativity or with a complete indifference that has taught us, “Appearance does not matter”. We as humans have an opinion about everyone especially an image of people of a certain occupation, we might have seen it once or not but that “image” is said so many times by others the image gets correlated and forms the stereotype we attach with a certain group of people. Humans are a social animal hence our opinions and images of others are not isolated as well.

Like for instance when one thinks of a politician here in south-east Asian countries automatically an image props up in our mind of an elder pot-bellied, snobbish, corrupt, authoritarian person in a safari suit but I know that to be so far from the truth as I see my father every day. He is everything good that man could ever be. Similarly, we have a set image of teachers, government/IT employees, police officers and the list goes on and on. Basically, we have images of stereotypes for every individual.

For every problem there is a solution, man is inventive by nature and necessity is the mother of inventions. So there were clothes. I wish I could tell you all about the history of clothes but I don’t know however it sure was not worn in the early times for aesthetic reasons rather for protection, safety and survival. Today it serves not just it main and primary function but also as a map of an introduction of our selves to others without even having a single meaningful conversation. Therefore introducing you.

There was a time in everyone’s life when someone else dictated our choices of clothes first parents then came school-guidelines, peer pressure, fashion trends society’s norms and values; etc. at some point in life we were all granted the opportunity to find ourselves in the world of clothes so sometimes with mishaps we learnt to speak for ourselves in the language of clothes. Clothes that we wear help us to combat some of the misconceptions and avoid being typecast. In other words, clothes that we wear function as a tour guide showing our real self to others successfully changing the idea of us from what people think they know of us because of where we come from, how we live and what we do professionally. Clothes give off the crucial introduction to self.

Maybe that is the reason why we don’t give any importance to what we wear when we are alone or with very close friends, family because they already know us, hence there is no trying involved in the relationship. However, the opposite stands true when we feel the need to impress someone before reaching the comfort level. Different images emotions and meaning are attached with a piece of clothing item eg; suits/formal pants/collar shirts all scream professional likewise some clothes are inappropriate for some occasions while it is exactly what is needed for some other occasion. We also attach “personally” some sentiments with some item of clothing like I  am always partial to clothes having stripes of blue and I cannot see myself ever wearing distressed jeans  both have images I have associated with them blue stripes makes me remember schooldays and was a happy time in my life, distressed clothes my mind attaches with poverty, beggars and homelessness.

Certain clothes make us very happy, they speak of values that we as individuals want and find attractive hence we are drawn towards them, we are all latching on to the concept that, “clothes embody values”. We are unknowingly but strategically showing to the world as well as reminding ourselves of who we are through the clothes that we wear. Our wardrobe is in fact lines of our autobiography. Consequently, to answer do clothes introduce you? Yes, clothes introduce us all.

Caged but free.

  A couple weeks ago when the weather was not this hot we, my family and I had the opportunity to visit Jamunkhadi Simsar; a community’s effort towards forest area and wetland conservation at the same time also uplifting the community economically.

On the way

Reached

Suspension or hanging bridge

Deer area .

deer area.

Jamunkhadi-Jhapa Ariel Drone footage

There were many animals some were relatively more free than others in terms of area they could move around freely in but they were all caged. it cannot be denied we had a nice time there. On the way back, however, I kept remembering lines from the poem;

“Caged Bird”
~Maya Angelou~

A free bird leaps
on the back of the wind
and floats downstream
till the current ends
and dips his wing
in the orange sun rays
and dares to claim the sky.

But a bird that stalks
down his narrow cage
can seldom see through
his bars of rage
his wings are clipped and
his feet are tied
so he opens his throat to sing.

The caged bird sings
with a fearful trill
of things unknown
but longed for still
and his tune is heard
on the distant hill
for the caged bird
sings of freedom.

The free bird thinks of another breeze
and the trade winds soft through the sighing trees
and the fat worms waiting on a dawn bright lawn
and he names the sky his own

But a caged bird stands on the grave of dreams
his shadow shouts on a nightmare scream
his wings are clipped and his feet are tied
so he opens his throat to sing.

The caged bird sings
with a fearful trill
of things unknown
but longed for still
and his tune is heard
on the distant hill
for the caged bird
sings of freedom.

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.

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.

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.

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.

Rose a story

In life we meet many people hear their very different stories while doing so unknowingly we become a passive yet a very active character in their story. Some stories are complete and come with a moral; some are patiently helping other stories to be complete or are just as many things life incomplete.

My name is Rose and this is my story, one of my many stories of life. I think it was in my destiny to wither when my parents named me Rose, a flower of so many colors and character nevertheless a very delicate and fragile flower.

Happy new year

Hi, friends Namaste

Wish you all a very happy and a blessed new year.

oh! You must be thinking and even saying loudly it is already the fourth month of this year and now you are wishing how late a person can be..tch tch

of promise and posts

When I began writing here I promised myself I will write and post once every week but the past couple of months I haven’t upheld my own word. I wouldn’t be telling a lie if the reason asked for the late post would be one of the following. 

• There were guests in my house so I pretty busy. 
• I had to get a lot of documentation ready so it was Search, search and more search.

(A person can have happy delusion…right)

can’t cook, won’t cook

Let me tell you about me when hungry I don’t like cooking I just raid the fridge and eat whatever I find bread, some salad, cheese, chocolates anything and if there is nothing I would rather go to the store to buy chips.

I wish I could cook… but…“I don’t know how to cook” but I am learning to sincerely, ask youtube, my trusty instructor, however only if and when I am in the mood to.

the confusion of hail stones

We saw hailstones after year more than 8 years, 8 years because that’s the age of my oldest dog in human years and she had never seen it so after the simple deduction I got the answer.

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.

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.

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.

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.

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.

Thankyou!

 Oh! I have dreamt scenarios where I was on stage receiving an award giving a long emotional speech ending with a thunderous applaud.

I am back

I am here and no one could be more happy than me.