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?

---

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.

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.

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

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.

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.

#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.

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.

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.

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.

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.

a lesson from Hibiscus

White Hibiscus

 

Red Hibiscus

What do I call it? red or pale yellow Hibiscus

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

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.

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.

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.