Criticism and Self-criticism

Sometimes I feel that what we criticize in the world is actually something we hate about ourselves, but that it's so deep inside we cannot manage to get rid of. So we keep fighting it externally as a means to become better people, all that unconsciously. I've just got this insight today about something I've hated for very long: Brazilian upper-middle class habit of solving collective problems individually.

For example, public education was good when my mother was a student. But for political reasons I don't wanna discuss right now, public schools didn't get the funding they needed, and in about 20 years, these state schools became low quality. Private school market flourished with the money from middle and high class families who could afford paying for their children to get good basic education.

Anyways, this was always something I've hated. Using the games theory approach, it was an individually sound decision to switch to private when things got sauer. But in the end it actually turned out destroying public schools which had taken many years to be established as quality education institutions in the first place. And when the good public schools were actually gone, middle class people became hostages from the private school market, forced to spending and increasing share of their income to provide their precious offspring with something they used to have as a social right.

And while I was not aware of the impact rehabilitation had in every single life decision I've made, in the end I have done a similar thing for most of my life. I've bet on my own means to beat the social mechanisms that exclude disabled people in different degrees, depending on how well these people can adapt to a world that's willing to change very little to grant them the right of full participation in life.

Similarly to what has happened with the upper middle class folks,  my solution of choice has proven to be a bad one, both socially and individually. At the individual level, I've managed to offset part of the nasty effects of exclusion by investing full throttle in rehabilitation, not minding the others whose physical conditions would make that harder or truly impossible (or even recognizing their existence or importance in any way).

So at first one can say I did well on that dimension, while letting others that shared a great deal of the pain I've faced to struggle alone. On the other hand, like what happened to the upper middle class people education example, I've also eventually ended up with a very unstable an suboptimal solution, even individually. That is, denying my condition in order to be better accepted has had this beneficial effect for me to some extent. But the weight of living in constant rejection of who I ultimately am implies in really high vital energy consumption. That coupled with prejudice and other adaptation impossibilities that were never recognized by anyone, having thus become hidden costs, has major impact in my quality of life and also in the lives of people I could have joined forces with to pursue a better collective solution together. As a result, my gross income relative to able bodied people with the same qualifications and credentials is also substantially lower.

Therefore, my point is that if something in the world really bothers you, to an extent that makes you want set things on fire, take a breath and a good look inside. The reason for you to burn stuff will likely have a strong presence deep inside you. And contrary to the middle ages widespread beliefs, fire won't set you free from these demons. But dialogue, awareness and social mobilization well might.

Too many answers

Lately I've been engaging in a sort of activism I never thought to be possible. This blog has begun with rejecting such an activity. In a way I've so far lived a life I didn't quite understand. Mostly because the real assumptions were missing.

In my recent disability activism spur, I came across with a book called "The Crip Theory" from Robert McRuer. And truth is this book has given me more answers than I've ever imagined being able to get in life (excluding probably some kind of esoteric experience of revelation). 

I'll definitely elaborate more on this discovery, because the theory is brilliantly outlined, very logical and clear. So even if the subject isn't free from technicalities, I feel the ideas are really accessible. On the other hand, it has left me in silence regarding actual alternatives for my own little life. 

I can totally get the mechanics of exclusion and it's not hard at all to frame my personal history to that structure (which is scary since we tend to think our personal history is actually personal). But now what? Can one scape from this carefully crafted social script and write his own stories from the moment of awareness on?

I'm sure there's a way since there is and there has always been a will. But for now I've got to confess that I've become existentially speechless.

A bit of concrete stuff - boy night out!

A dear friend of mine has read these texts I'm casting upon the web and have asked for a bit more daily, routine, concrete content. As much as I love abstractions, I guess she's right, and the average reader might like to see things in a more down to Earth fashion. So I'll start with the first one that popped out in my head. I currently work for Google at a really international team, which provides me the chance to travel abroad more or less often (more to come on this part as well). In one of these trips I went to Munich, Germany. It was already weekend and I thought about going out and have some fun (as a handsome young foreign guy would love to do on a Saturday evening). So off I went to the place recommended by the hostess at my hotel. It was a Mexican restaurant-bar, which is not my favorite food anyways. But what a hell, when in Germany, why not go to a Mexican bar?

Transportation in Europe is quite amazing compared to my South American Megalopolitan standards. Metro took me quite close to the place. Plus, believe it or not, a cab in Germany richest city is much cheaper than in my hometown São Paulo. When I got to the bar, it was quite packed, warm and noisy. The young handsome and south american part of me loved that. But reality check quickly made me refrain from my earlier mentioned young handsome guy identity to the one of the disabled fellow that has a lot of trouble in walking in crowds (some idiotic and yet interesting effect of cerebral palsy is that learned gait adaptation mechanisms can fail under physical or emotional circumstances, as much as the other motor coordination control gained in 20 years of physical therapy). So there I was, trying not to trip on people, and politely reach the bar for maybe getting something to drink. Luckily I really like beer, but even if I didn't, no other drink would come in a package that would avoid spilling stuff in the crowd.

Of course I'd as usual refrain from eating, because that would demand too much from my motor coordination, killing the last bits of enjoyment I could get from that situation my friends in Brazil would have loved to be into. When I finally managed to swim the crowd under critical eyes that treated me like some drunk scumbag everytime I've lost balance and touched someone unintentionally (even though I hadn't even reached the bar yet), there was still the matter of being understood by the bartender in the midst of all that noise. But again luck was on my side, and the German for "a beer please" is really straight forward. The young German bartender took a few minutes to bring me my beer, but I was ok with it since there were many other people ordering at the same time in the middle of that fake Mexican chaos.

When my beer finally came, it was time for reaching for the money in my wallet. Usually I don't use money, I always go for cards, but for some reason (maybe one of those illegal rules bars love to institute) I needed to pay in cash. Well, you know it can be hard to distinguish foreign money bills in the dark and with people pulling you around for getting somewhere. All that must have made me extra slow in getting the money, because when I paid, the guy just threw the change as if I had called his mother a whore or something like that. I felt I needed to do something about it. Of course not throwing the full bottle on his head, which was the first thing that crossed my mind, but something civilized and adequate. Since I was in a rich and civilized country, my choice was to look for the place manager and make a complaint. I'm not quite sure what was the outcome I was expecting from that complaint. Probably an apology, or something similar.

There was a woman who appeared to be giving orders to the bar crew so I thought either she was the manager or at least knew who the manager was. I've approached her and asked if she was the manager. She said no and dismissed me as if I was some sort of homeless guy asking for money in front of the bar. My heart was pumping like crazy, and now I felt I'd need an extra bottle to break in that sorry woman's head. Maybe with that in the back of my head, I came to a lovely young waitress and ordered another beer. She was sweet, delicate and beautiful and I felt like asking about the manager. She confirmed the manager was the woman I've approached minutes ago. That was it. There wasn't a place for me to seat, it was too hard to get a drink, and people would star at me as if I was drunk or drugged. So not that much fun for me there. I thanked the young waitress for talking to me like a human being and wrote a review on trip advisor. Of course I didn't get any answer, much less an apology from anyone related to the bar.

And at the time, this sort of situation would be extremely upsetting. Because I never thought how much of a jerk the guy and the old woman had been back there. I was mad at life and God, and myself to be disabled and thus not be able to have fun on my Saturday night in Germany. My goal with this text is not to make anyone feel sorry for me or to show how frustrating it can be to be disabled even being young, healthy, and having money to spend. What I want to show is how much disrespect and distress someone with a disability can find regularly, even in a very rich, educated and civilized country. Also disturbing is how the people causing this distress will get away with that as if they haven't done anything wrong. They can always say they didn't know. Plus, I wasn't physically hurt and I got the beers I've paid for. Experience was shitty but I guess this is what's expected from disabled people life to be like. Still I can't find a good rational explanation for that to be the case. Maybe I should measure my cranium or invent other stupid meaningless number for the situation to make sense.

To my able bodied friends: Comments on the video "I'm not your inspiration, thanks!"

Video

Again the old ambiguity. Can we get actually real?

This is a brilliant video about that particular end of the spectrum on how to conceptualise disabled people. Here we're probably looking at the good and warm hearted part of the so called "normal" population. But hopefully this video will clarify this is not adequate or positive either. This is like a soft form of exclusion. It probably feels a bit less worse and cruel, but it's still far away from good.

Let's try to separate things. If the society makes it extremely hard for a disabled person to perform well in the normal material standards - like money and accomplishment, it won't get any better for this person to be considered an angel, or pure, or anything like that. Yes, it is much harder to live with a disability and statistics show clearly that there are huge economic costs associated to that hardship (even when it's very difficult to dimension it). But what disabled people need is you guys to help reducing the barriers, not turning them into something cute or noble.

In 2012, I was engaged in researching the cost of disabilities in Brazil for half a year. And the more I'd study the methodology we were using at the time, the more I'd realize that approach was completely pointless for some one with my particular disability. Why? Because all the aids we were assessing and pricing that can be used for making the life of other different disabled people better are completely useless for me. And still, by being part-time employed in that very research project was a very good sign of the cost of the disability in my life.

It's not that the work wasn't good, or if it was especially badly paid. It's just that this wasn't my choice in terms of career. I've studied business, and even though I don't agree with lots of principles in capitalism and corporate world, that's what I was trained to do. As for most of my University colleagues, I speak several foreign languages, I went to the best University in the country, I have international experience and I've been an intern at very reputable places. Plus I have a high level of general culture and maybe even higher level of intelligence.

So why do I make 70-75% less money than my average classmate? Some people will tell me we shouldn't compare ourselves to others, especially in a world of inequality. And of course this observation doesn't make me happy. But the weird thing is that, accepting that fact is much less painful than thinking about what I've been doing wrong for all these years. 

My invitation to my abled bodied friends is then the following: please don't think about me as an overcomer, a natural in these inspirational affairs. That doesn't do any good for the fact I've got disadvantages in almost every field of my life. Instead, try to work with me to understand these disadvantages on a deeper level and reduce them the best you can.

I must say perception is one of the key sources of these disadvantages in my case. So spreading the word in the right direction will some day allow me to lead a life that's more similar to yours. Not because I'm a professional overcomer. But because I'm clever, educated, polite and kind, and in a world that doesn't treat me badly (or inadequately, even with good intentions) all will come natural as our relationship has become. Not only for me. But for everyone. 

Passive prejudice

It's everywhere. But like with the air you breathe to survive, you're probably not aware of it. You might be a perfectly nice and descent person and you can still be acting exactly like the asshole next to you. Why? Because we depend on perceptions to grasp underlying truth. 

But by just looking at the outside, you might appear to be acting on exactly the same manner. I'm not saying that makes you exactly the same as the racist asshole by your side. In this case I'd be acting like one myself, and blaming others for this decision of mine. 

As for myself, before judging someone and casting your rock solid certainties upon the world, actively or not, please take a step back. Think about the consequences of going down that road. The world is still much more physical than anybody seems to care to admit. And I think this gap lies exactly on the confusion between passive rejection and actually not having prejudice. They look the same on the outside, but don't fool yourself for even a second. They are not.

Small digression

When I talk to my friends (none of them has any disability as formally defined) about issues I face in life, they will often tell me something like: but these are things everybody feels/go through!

I've never been satisfied with this answer, but could never find the perfect answer, which I just did. Quoting Bono Vox, truth is "We are one, but we are not the same".