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.

Disability microeconomics: easy to understand, hard to fix

Let's begin with the easy part, since it's easier. Equation for perceived value by a disabled person is shockingly the same as for everybody else:

benefit/cost = value

Suppose someone has 2 options about what to do on a Saturday afternoon. If the choice is rational, this person will compare her/his pool of available options, observing these two dimensions to determine the best one (higher value one).  Interesting point is this expression shows that there are endless benefit/cost combinations that result in the exact same value. These combinations are equally interesting for this particular person, which makes her/him indifferent to the choice at hand.

Another important aspect to consider in this analysis is that even if the ultimate judgement of benefit is individual, the cost is considered within a common framework: money. Surely the subjective value someone attributes to money can vary. And certainly the same amount of money can represent whole different individual costs, depending on each individual income or wealth. Still, money is the common transaction denominator that acts as a mutually agreed unit of value. In other words, if I and somebody else goes to a store to buy a TV, the same appliance model will have the same price for both of us (let's leave complex commercial terms aside for now).

The price is the same because it takes into account how much profit the store owner wants (and is able) to extract from the activities related to commercializing an item. In simple terms, it doesn't matter to this person who will provide her/him with the money in exchange for the TV set. The important is that this money is more than enough for her/him to have made all the previous efforts and investments in order to be able to sell this product.

To a certain degree, everybody in a society is doing the same all the time. Comparing the investments and efforts needed to obtain a particular amount of money, which by its turn can be converted into benefits or the investments and efforts needed for getting something good (and that can usually be priced as well). If people are rational, the equation mentioned above will be valid for almost every decision someone makes in their lives. And economically, people are valued according to their capacity of converting their efforts and time into the highest possible amount of money. Theoretically, because they can provide services, products, skills that are highly demanded compared to their relative supply.

Disability matters have been sometimes considered complicated. But reality is awfully simple. Complicated part is living reasonably well under disability conditions because of the fact able bodied folks usually don't get the problem at all (by get, I mean perceive, understand and act on it). Let's find the explanation in the simple math expression above.

Disability is not something one has. It's not a malfunctioning or missing body part. It's actually the restricted participation in social activities that results from interaction between an individual as a whole and his/her environment.  Thinking about the equation above, let's analyze the part where a disabled person exchange time, effort and investment for money. In other words, work. Environment conditions will first of all prevent the disabled person from acquiring skills to be traded by more money later on. School is a hostile environment that usually doesn't take individual needs into account for preparing someone to life.

A deficit will also happen with the purely social interaction activities, because usually the disabled person won't be able to part take in other children play. Not only this will make this child more insecure and less happy. It will also stand on the way for getting the related social skills.

If this individual is lucky and really hard working, exclusion won't be a total one. But the social benefit extracted from the interactions with others will be relatively lower, because of the partial degree of inclusion. More than that, the cost will also be higher, since it will take extra effort for this individual to achieve even a sub-optimal degree of participation and benefit.

However, western culture really loves selling hero images of disabled people. Maybe because these help to alleviate other people from the guilt of providing such awful life opportunities for the disabled ones. Perhaps they think this aura of special has any value, since real non-disabled life is not a real option. Or even that cheap pity-like emotion generated by treating disabled folks like that can also be turned into money somehow.

In any case, being an inspiration on these terms is something every disabled person should refuse. Price for being an outcast, either in the good or the bad sense, is way too high. We ought to want to be people. Let's leave the inspiration to art.

Another one on parents

I guess I've already written something along these lines. But even if I did, mentioning this aspect again will be definitely a good use of time. It's difficult to be disabled. And to a certain degree, it's really tough if your parents are not. Obviously the fact mine aren't probably made their life a bit easier in providing for me, besides covering all my so called special needs.

However, despite in my case love has never been a doubt, it's hard to identify with your folks, and especially feel understood by them. You may desperately want to be like them, and use their role model as a means to overcome the challenges of life. Yet, although most issues disabled people face are the same everybody else does, intensity, level of preparedness and timing are usually completely different.

Particularly in my case, this has also happen with all my school mates and siblings, since I've never attended special school in my life. Meaning that chances I'd meet some other disabled guy at school were extremely low. No wonder even today I still feel this urge to fit in, even though by now I'm super aware of how different I am, and also that despite others also see me as such, their portrait of me is of little use to make my life better or easier.

Anyhow, for a big chunk of my life I've been reflecting about what my parents did wrong, because since I've turned 14, life has always been very far away from where I thought it should be. Then I'd come to the conclusion they didn't protect me from others when I needed the most, because they wouldn't fight others when they would point out my differences, and make my world collapse.

In this very painful looking back exercise, I've convinced myself that if they had protected me from these external threats to my identity as a normal kid, I'd probably have felt more secure, and would have been better able to tackle these threats by myself when the time came (and it has come really early).

Although psychologically compelling, I don't really believe that anymore. It's true that feeling I wasn't facing this world alone would have probably made me stronger in some sense. But the understanding they've had that engaging in these fights would only single out my differences even more makes total sense.

In my current state of awareness about my life, I realize they were not the only ones confused about how to treat my differences. For them and all my closest friends, I was truly just like everybody else. Not just because you tend to find close people normal, but also because I did a very good job pretending I was normal.

And honestly I don't think it was such a bad idea to try that. If it wasn't for this effort, I'd probably be even less capable of living in this non-accessible world. But the issue is how much you believe you can get through all the barriers and how failure makes you feel with yourself. I'm pretty sure if I didn't believe I could live a truly normal and fulfilled life, I wouldn't have made so much excruciating efforts.

On the other hand, the gradual clarity about how unlikely I was to succeed, has left me in a tough situation. Because not only all the effort I had made hasn't brought me where I thought it would. At the same time, my success at entering able-bodied world has given me a privileged view of folks around me, going much farther with half the gas.

So now I've reached a weird place in life. Because of all these disadvantages I've had, I haven't got even close to my full economic or social potential for my age and education. At the same time, I know although my disability is said to be stable, in reality it will make me older and more tired sooner than everybody else I'm competing with.

As much as I've learned to detach from the social circus for thinking about my self-worth, I'm dead sure than when I go to the supermarket or when I pay the rent, I won't get special prices for disabled people. This means despite making more effort, I'll get less because of reduced income. And at the same time I'll need more, because of speedy aging and physical impairment evolving.

I really wanted to be optimistic about my life, and hopefully inspire some folks in the process. And I guess whoever watches me pretending my life is normal may get this mistaken impression I've made it. But it turns out I've got much better at math after turning 30, and this problem doesn't have a good solution.

While I want to thank my parents for all the effort they've made, and absolve them from any guilt of raising someone that will face increasingly serious economic issues, despite of a high educational level, I'm afraid I can't provide much hope to anyone right now. I feel my parents and I did the best we could, and still we've failed to overcome this disability related vicious cycle. And some days I just don't know how to carry on along this road.