virus pathogen infection

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.

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.

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

#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