Good news, bad news

Do you want to make the world a better place in your lifetime? Well friends, I've got good and bad news for you. Which do you want to get first? Well, I'll go with the good one first: you're probably going to live a long life. I'm no psychic or anything to make this statement with great level of certainty. This is what's happening to most human beings that are not inhabitants of war zones or other extremely unfortunate life conditions. Even in my country, Brazil, which used to be seen as a very poor one (at least populated with millions of very poor people), average lifespan has gone beyond 70 years old. In rich countries this is even more pronounced, and general life expectancy is increasing more and more. In some cases, average is reaching 80 years of age. People usually say they wanna live long lives. So this is the good news I've had for you.

Time for the bad news (it usually comes eventually). And it is very much related to the good one. When people live that long, disability rates of all sorts go through the roof. World population is getting older. Thus it's also getting increasingly disabled (group number is currently more than a billion people). That happens because medicine has done a terrific job in preventing death from all types of disease, and trauma. But it has been far less efficient in restoring bodily functions that make people live well. A great example is paralysis caused by spinal cord trauma. Prognosis for someone that experiences that in 2015 is not that different from whom would faced the exact same issue a thousand years ago. Of course today very few people can benefit from electronic exoskeletons and other high-tech/high-price solutions. But it's not really restoring body function. It's replacing it at best, with very mixed results. So let me make it a crystal clear for you: if you're really lucky, you will be disabled at some point of your life.

This blog is almost entirely dedicated to show everyone that's interested how leading life with a disability is. So I'm not going to focus much on this here (you can refer to all the other 70+ essays I've published before). Now I'll switch to good news again: because you are not disabled yet, you can still probably change your future with far greater ease than someone that already is disabled. In so doing, you'll improve lives of these folks who are disabled already, but also make your own life much better and easier in the future.

Sure, you can wait for some brilliant scientist to work her ass of for inventing the cure for all the underlying physical disorders that contribute to disable people along with the environment we live in. It's probably the easiest thing to do now. But if you were your current age 50 years ago and had done that, you'd still be waiting for the cure to come.

Don't get me wrong. I really love Kurzweil's landscape of human future. It's based on hard science (which is refreshing per se) and it's rationally very optimistic. Everywhere we look at, it's possible to detect exponential increase in technology advancement. That means projecting the future with a linear mindset (which is usually what people do) will generate a very imprecise picture, to say the least. The world itself can be very complex and hard to anticipate, but, for some reason, our ability to create more powerful technology is not. Therefore, any reasonably accurate prediction about the future should take that into consideration. Problem is that generates leaps we can't fully understand. Because this is not only a quantitative technology revolution. It's also a qualitative social one, in the sense that as price of these tech resources drops, it enables them to be used in very different ways compared to what we currently do.

Unfortunately, young people get disabled too. It happens all the time because of traffic accidents (which are also a leading cause of death in this age group). Again, getting hurt but disabled is actually the second best case scenario. Not to mention your kids that can be born with cerebral palsy, that affects eight babies in 1000 born alive and it's only the most common disability among children. There are several others. In all these cases, you'll have to deal with disability now. And believe me, it sucks.

So my proposal for you is that you selfishly take action now. Help destroying the barriers, physical, cultural, and social that prevent a disabled person to live to her full potential. You can do it out of altruism, or just treat it as a pension plan. In any case, as with saving money when you're young, this is the best time to make most impact because you're not disabled yet. This means the current environment settings don't disproportionately offset your every effort. So do that now! And I promise, with 100% certainty, this will make the world better for every human being on Earth.

How much truth can we get to?

Human beings are flawed. They make mistakes all the time. But I feel the most dangerous mistake we often make regards our judgement, not our actual knowledge about objective facts. In other words, I wouldn't have any problem with the world if decisions were mostly made by using the best methods available to mankind at a given point in time. What really bothers me is human capacity of condemning perfectly good methods of reaching objective knowledge just because conclusions they lead to go against human intuition itself. 

The universe is huge. We won't probably be able to get to know a significant share of it. Ever. But this doesn't have anything to do with how valid our methods to build knowledge are for explaining what they've aimed to explain. For example: it's illogical to think medicine effectiveness on fighting Polio has any direct correlation with its current ability to cure cancer. These two measures are completely independent, even if the method for getting to both has been exactly the same. It's possible and it happens all the time. You can establish two completely different effectiveness levels for currently curing two different diseases and at the same time be completely unable to deny the validity of the scientific method that has produced the two different treatment protocols.

Science is not perfect. It has its limitations and it is always evolving. But making intuitive claims about its method and call it critic view is just counterproductive. The main reason why science has allowed us to amplify our collective knowledge about the world so ridiculously in a very short period was the possibility to detach its conclusions from individual sensory experience. Which means that if a study was properly conducted (this is where critic view may actually  apply) and it got to a result that goes against your own experience and intuition, probably your experience and intuition are wrong. 

This is wonderful. Because it means that this piece of knowledge generated there doesn't depend on anyone's ability, personal opinions or perceptions to be valid. It's also the main reason why science is so powerful and so great. My take here is simple: discussing can be a healthy and productive exercise. As long as we focus on the right questions. Otherwise it's just like going back to dark ages again (even if you don't leave your cutting edge smartphone alone the entire time).

Disability and romance: tough combination

Dating sites offer a near magic experience for me. One of the things I've always hated about disability, even more so as a teenager and then as a young adult, was the apparent impossibility of getting some rest of it. Especially as a social interaction mediator. I really wanted to be seen, beyond any underrated external appearance or label. But this one would never go away.

Last time I've checked, over 60% of women claimed they will never be romantically involved with some guy with a disability. Even before having data, I've already come in too close contact with these statistics. This situation has always been very perceptible with several different degrees of clarity. Actually, this was the very first aspect of my life for which disability has shown to be a rather powerful excuse for exclusion, and frustration source. Best part is nobody needs to say a word about it. But it's there. It always is.

I could go (and went) for the psychological simplistic reading that I was pushing all these girls away, because I myself wouldn't accept who I really was. Again, accepting that would give me some sort of potential feeling of control over my own life and destiny, which I guess any developing person needs to grow up with a bit of self-security. Plus, despite the fact this pseudo therapy process would transfer a lot of my parents money to psychotherapists' pockets, there hasn't been much noticeable effect over my emotional well-being.

Apart from that, the more these romantic relationships would grow in importance and time spending among my friends as I'd grow up, the more alone I've gotten. Not only I wouldn't be able to interact with the girls at this level like they were, and make a sense of my own sexual identity, but I'd also become so different from my able-bodied friends, that I would soon become some sort of cast away right in the middle of regular school, the place I'd be occupying if it wasn't for being disabled (in fact, a place I had occupied not very long before since at that point it was up to me).

Most of my timid experiences in the romantic arena have started happening when I was around 19. And of course there was an additional price to be paid for initiating my life as male at that point. When I say these experiences have started then, I don't absolutely mean they've become a steady flow. Quite the opposite. Too many obstacles in life would provide extra difficulties for getting and maintaining these relationships. They'd feel much more like a fortunate accident, than something I could say I've had any control over. I've had too heavy luggage to carry. So either I'd be discriminated (no words of course) or would be deemed as exaggerated and neurotic.

This has been an ever present giant hole in my life. Scale would tilt to both sides and I'd never be positive about the ground I was stepping on.  Difference was later on, unlike in my teenage years, it wouldn't be the only one. Fact I was really clever all my life has brought me safe and sound only until University prep course at the age of 18. Everything I needed to study was well organized and accessible, which gave me the chance to become a top student, despite the never ending depression, exclusion, and loneliness.

But when I went to the University, things were all so different. Nothing was organized or accessible there. Classes would happen all over the giant campus. Books wouldn't be available, and even if they were, I'd have to spend very long looking for them at the huge libraries. I'd just get exhausted and learn very little. Fun was always related to activities I couldn't take part on. I was ashamed of all that. I thought it was somehow my fault and couldn't bond with my colleagues. Plus, it seemed I had become dumb all of a sudden. There was absolutely nowhere to anchor my self-esteem to. It took me more than 10 years to understand why university was a lousy experience for me, even as a student.

Today, besides the limitations currently imposed on me in leading my quasi-normal life experiment, I still face all these other demons from the past. Exclusion is something similar to heavy-metal poisoning. You get it a little at a time, and it accumulates all over your body and your life, generating some nasty effects as time goes by. It's always easier to blame that on someone's personality. It's better for the conception of world dominant people like to live with. Only issue is that's freaking unfair.

Very often, I feel like escaping all that. And a guy  like me, whose disability is only perceived by others as I move and speak, online relationship sites are extremely refreshing. As I've mentioned in previous essays, not because I'll trick girls to believe I'm something I'm really not. Before meeting them, I always go through the very unpleasant process of telling them about my disability, explaining it in the most detailed manner I possibly can. Some of them will just stop talking to me, as if I've done something wrong in having that in the first place. Others will say it's ok. Of course ok in theory is a whole lot different from ok in practice, and I get it, really, I do. Few will like me as a man, and treat me like they would do to any other guy. I realize these are very few, and meeting them takes lots of time, effort, and emotional energy. This is very frustrating at times, since I also have extra work to do at the other aspects of my life.

However, as nice as being in the game for finding a life partner maybe, I've realized the most value I actually extract from the whole online dating experience is not very correlated with the 3 or 4 dates I can have in a very long time and in which we both get attracted to each other (and that won't necessarily become anything else, because life's too complicated). The thrill I get from swiping and talking is actually bitter-sweet. I get to experiment a taste of the life I'd have if it wasn't for my disability. It's sweet because it gives me the certainty I'm a nice, even good looking, very lovable man. It reassures me about qualities I do have, but which are often offset by stigma or any other form of prejudice others usually have embedded in their eyes. But it's also very bitter when the real date shock makes me aware of how my life is poorer in pleasant and tender social experiences than it would be in a disability-free environment like the virtual one I've had the chance to flow in. No matter what happens, I've got to come back to this concrete reality eventually. And especially in comparison, it truly sucks.

Disability and fundamentalism

Today I finally felt like a suicide bomber. Of course I didn't explode myself or anyone else. Not literally anyways. But I've had the experience of protecting a principle with my life, because as for suicide bombers, what was being innocently minimized by others is exactly what has finally given me a direction and provided a compelling meaning for my life as is.

However, contrary to what usually happens to terrorists, enemy identity wasn't really obvious. As a matter of fact, the enemy was disguised in such a way that externally we'd have been considered as equals.

This was probably the most painful part for me. Because what has likely brought us together were terribly similar life circumstances. I'm sure although she had never mentioned that explicitly, the fact she has been temporarily disabled when she was a kid, must have opened her eyes to several issues I've faced myself.  Question is to what extent.

I've told her about my disability since the beginning. I thought that was the most honest thing to do. Also, I've realized this is always a much better approach than assuming the difference doesn't matter, and meet the other person unprepared.

What I wasn't expecting at all was that she herself had something that could be disguised in pictures, and that potentially could change radically her attractiveness judgement by these. At first, I just didn't feel attracted when I've faced her true self. This wasn't new at all. It was indeed the most frequent experience I've had in these semi-blind dates short career of mine. Something I didn't expect at all, by the way.

The other unexpected came later. All these unattractive layers of her just melt away right in front of me. And all of a sudden, I was able to see a person that was actually much more attractive than the idealized and carefully edited virtual version of her. Things could then flow well, at least for me. But on the day after, she has felt the after-shock of our collision. She was hurt by the fury with which I've argued for protecting my reason to live. And she never wanted to see me again.

The impossible

I came to believe there's no such a thing as impossible. But definitely not in the inspirational porn way people use to portrait disabled folks. Rather than that, I just draw on the fact at least as long as we live, there's always another day, whether you claim you can't stand it or not.

But there're certain mechanisms in living creatures that seem to act as a circuit breaker. If you like the idea of God, maybe you'd like to blame this on her/him. These switches seem to do nothing but to abbreviate terrible suffering with death. And they can be activated in animals, usually by inducing life threats the subject can't either escape or successfully beat.

Issue is, for some reasons probably related to human distancing from a standard animal model, these mechanisms often become the problem itself, turning into an acute or chronic mental illness. Under this light, disability has huge potential to produce that as a byproduct. Because analogous to survival in lower animals, development stage of someone in a given chronological time in life is very much correlated to this person'a ability to integrate socially, and support himself and possibly a family by doing so.

But for some reason, when partial integration is achieved, people around don't seem to get the weight of this deficit. Maybe it's just a matter of reference. Since these people don't identify completely with a disabled person, they can't see her as just another human being. Partial integration itself motivate able bodied people to expect less from the disabled, and therefore not get the gap dimension between the two body conditions.

On the contrary, able bodied folks seem to consider minor accomplishments as something disabled ones should nurture their souls with. This is probably the reason why it's so difficult to make things better, closer and more fair. 

Van Gogh

Today I'm playing Vincent Van Gogh. I won't produce exquisite art. I'll just play with contradiction. I'll write these words down with the sincere hope no one else will ever read them. Because the fewer people do read them, the easier it will be for me to forget them all. And in my case, as with so many other folks on Earth (over a billion), this is the best way to live, for very often only ignorance can justify hope. So I'll throw these words up, and then just forget them.

It seems like a contradiction such as the one of those Van Gogh is famous for. Everybody knows Van Gogh. He's considered one of the greatest art geniuses of all times. A painting made by him can easily be sold by dozens millions dollars. Yet when Vincent was alive, he has been mostly sustained by his beloved younger brother Theo. But this isn't the contradiction I'm referring to. The one I'm talking about is usually not deemed as such.

Most people think the act of cutting off his own ear is rather consistent with Van Gogh's poor mental health status. And in a mere factual perspective, this interpretation makes all sense. However, if one looks a bit closer, it's not difficult to realize this self-harm act was actually a clear struggle towards sanity. Very similar to my own.

When I was little, I was used to blaming myself for all the recurring social defeats I'd face. Said that way, it seems I was just harming myself like Van Gogh, which can also be seen (and it was) as a sign of poor mental health. But as with Vincent's, my case was also a big contradiction, deep down. Because for blaming myself to depression about the my consistent bad life outcomes I've started accumulating in my teenage years, I was actually protecting myself at two very deep existential levels - thus demonstrating remarkably intact mental health, despite feeling very sick.

On one hand, blaming myself would harm me by leaving me lost in confusion and uncertainty about my present and my future, which is a very unpleasant place to be. It would also be quite unfair of mine, which is usually something we don't really desire to have targeted at us. But as with Van Gogh's cut-off ear, I was actually just claiming sanity through apparent madness.

Because if I was to make myself my own slaughter, theoretically I'd be able to stop the torture when it got nasty enough. And in this case, there would be concrete reasons to keep hope for a better life one day. A life I would still be in control of. Furthermore, it would also let me keep my imagined future intact, and keep dreaming about reaching my full potential one fine day. Meaning I could still hold on to the normalcy I've fought so hard for my entire life. Of course I was hurting myself. But that would allow me to ignore something much worse.

What's indeed demanded from a highly qualified disabled person is also utterly contradictory. One has to be detached, but in an highly engaged way. She has not to care much about the relative results of her efforts, and still feel she's not considered inferior by others, thus preserving her self-worth. She needs not to dream much, but still keep motivated, because not doing so will mean an even greater level of failure and misery.

She must accept being supported by others at the age of peak of her productivity, and yet not feel scared by the fact her parents are getting older, and won't be around forever to help out. She must not feel inferior, even knowing she has to put up with conditions nobody else at her standard social position would. And she needs not to hate the world around her so she has some belief in the status quo, although she knows there lie exactly all the underpinnings of her deepest fears realization.

Since I'm meant to live in these contradictions, I'll myself seek sanity and hope to figure them out by writing down every single one of them. Forgetting is the only way my inner peace can reemerge at some point. And as in all the countless other times before, this is exactly what's going to happen. At least until I get blind with all this worldly clarity and once again have to pierce my own mind's eye while seeking some darkness to be able to finally see again.

Much better, but still not good enough

For the past two years I've been under a terrible combination: a very bad manager (in every possible way) and a working environment which would allow her to disguise misconduct as pure ignorance. The forces inter-playing in that situation didn't leave much room for hope.

But this time around I've been very lucky. Because not only the acute terrible situation went away with the people that were triggering it, but also because I finally got to face my true self and deliberately stopped the fine art of making things worse.

However, concretely, no matter how stronger and more prepared to deal with nasty people I've become, I'm under the impression some of the damage made has been sort of permanent. I guess the model of disability I've come up with, mirrors quite well the one Malcolm Gladwell Outliers has used to establish why some people get incredibly good and successful in what they do.

The book brings several staggering examples of the very same phenomenon. A combination of little recurring life advantages coupled with the chance of employing extra effort ends up producing gigantic results.

I've never read anything along the path I'm going to walk here, but I have the feeling disability functions in a very similar way, but in the opposite direction. Results consolidate overtime, which provides the possibility to someone not to understand what's exactly going wrong. But socio-economic research doesn't leave much room for doubts: disability usually results in lower income coupled with higher regular life expenses.

I'm a very good example of that cumulative disability effect. In theory I don't have any categorical limitation to perform ordinary life activities. So together with a lack of identity with any social group where disabled people are prevalent, I've lived most of my life in this very strange situation. An instant analysis of what I could potentially do at any given point in time would never reveal clear signs of incapacity, (as by the way the little ad. And because of that, I really couldn't tell until very recently what was wrong with my life, even though for someone that doesn't know me very well that seems really obvious.

Time and again I've been blamed by these cumulative results. Most of all, I've been accused of being spoiled and intolerant for either being mad at that situation or depressed after depleting my vital energy reserves fighting it. The more I interact with people, more I come in contact with these two extremes. Some will vehemently deny the existence of any significant difference. Others will despise me, and treat me as an inferior sub-race.

I reckon if there wasn't any difference at all, just this schizophrenic nature of the social treatment I and most disabled people encounter on a daily basis, would already be enough to generate a negative impact on one's quality of life, let alone self-worth and hope for the future.  So not being abused at workplace (at least not deliberately) is a great improvement in my life. However, when I think of myself as any other human being, that's really not enough.

But again, no matter what anyone tells me, disabled people are not seen or treated as people. Therefore, for everybody else, all is just fine.