Some months ago, I've retried to do something I had already experimented with when the first social network came along in Brazil. This time, I went to Facebook to try to find people with similar life situation compared to mine, so maybe we could exchange some thoughts, impressions and experiences and hopefully reach collectively a better place.
My first attempt back in 2006 was a total failure. The community I've created has attracted all sorts of people, some related to Cerebral Palsy reality, but extremely rarely someone that actually had it as well. I felt really frustrated. But at the same time, my level of acceptance of this condition of mine was very low at the time. So frustration was somehow balanced with the feeling I was pretty unique and maybe I didn't need this kind of social context to build my own identity.
Then I've lived in Scandinavia, and I traveled all western Europe. And while places were beautifully different, all of them had something in common among them and also with Brazil. I was still an outsider, and it was impossible to blend in.
I'm not saying I didn't have a great time, or that I didn't make good friends or nothing like that. But it has become crystal clear I wasn't a regular guy my age, sex, education, economic and cultural background. I was something else. And even if I wasn't only that, this is what others would think of me in general and treat me accordingly.
I don't want to talk about the kind of suffering I've had because of that. I think I've already written too much stuff on that part. As I've said in the title, this text is not meant to foster awareness of abled bodied people. I'm targeting disabled folks. Especially the ones in similar conditions to mine. Let's just say I wasn't happy at all.
It has become clear to me that this suffering had one single root cause. And the reason why I feel I can make this claim is because it has ceased since this piece of the puzzle has dramatically change. Let's go for it.
Humans are true social creatures. They sometimes don't know that, but most of what they do is referenced in social groups, including their expectations for themselves, their lives and their future. This lack of awareness justifies with perfection why I wasn't able to get support from friends and why psychotherapists have done nothing to make me feel better. In both cases, we were not using the same social references. Therefore their advice was useless for me at best.
This suspicion has compelled me to look for people like me. And this is the same thing that makes similar people cluster together and be the context of each other's life. But of course nobody does that with great level of consciousness, so in general they feel there are lots of coincidences in their recurrent affinities.
As I've mentioned earlier, in 2006 this search effort was a huge failure. But then I've tried again a few months ago. This time, things were different. I did find some people that had probably being diagnosed with something very similar to what I've been diagnosed 33 years ago. Not in Brazil, because here I suspect general social conditions wouldn't allow someone with my level of disability to get close to where I got in life. But I thought maybe in the US that could be the case.
On the other hand, I had read a bunch of articles and participated on a project as a researcher that had pointed to the fact there was a huge socio-economic gap between someone with or without a disability, keeping the other demographics constant. According to this scientific literature, I wouldn't find people competing at the same social play field. The reason for that is really simple. Disability represent a disadvantage on every stage of one's life. In each of these, there is some degree of loss in growth potential (social, emotional, and also economic). So, in the end, the gap gets really wide as time passes.
The curious thing is that, although this fact is backed up by serious scientific research, I'd have a surprise when I've started having conversations with people with CP in this Facebook community. Apparently the conditions in which these people lived were at best similar to mine, never significantly better. Despite of that, they would systematically deny the reality we've all lived in and as I was absolutely convinced they were wrong, I wouldn't change my mind without putting my hands on trustworthy data that would prove I was wrong. I must say that, in this case, being wrong would make my life and my future outlook incredibly better.
The guy responsible for the community, who was also incapable of tolerating a well backed informed opposed position has then expelled me from the forum, which is very compatible with someone without good arguments. But he has also completely eliminated his very poor chances to prove me wrong, but also make me very happy.
Today I dedicate this text to him, and I reiterate my challenge of outsmarting my conclusions about life outcomes from people with medium cerebral palsy diagnosis. I have to confess I don't even remember his name, and I don't feel like searching for it to put it here. If he's right, I don't have to do that, because somebody else will come to this blog and show what I'm saying is BS.
I'm assuming this is not going to happen for the time being and I'll close this text based on this assumption (that I promise to change if anyone brings good info that justifies doing so): I think that guy was in denial. Maybe he's happy like that, which I honestly don't believe. My take is that he isn't, because denying these differences and disadvantages (which I've also done for most of my life) implies in feeding unrealistic expectations, which in turn leads to chronic unhappiness and confusion (which was also my case).
My journey of getting rid of these illusions of normalcy has been tough, I'll never tell anyone otherwise. A friend of mine told me something analogous about ending a relationship. You need to bury the memories, but more importantly, you must bury the future you've dreamed of living together. This was exactly what happened to me when I gave up on normalcy. I've had to let go of the future I've dreamed for myself based on the false assumption I was like everybody else.
The fundamental difference in this case is that sadness can be finally overcome since changing expectations will effectively destroy the illusions feeding chronic unhappiness because of what was supposed to be. And I can guarantee to my CP fellow that this was the best and most liberating event that has ever happened to me. Thus, although him proving me wrong could potentially improve my concrete possibilities in life, he or anybody else will have to do a killer data analysis job to accomplish that. The challenge is on! Good luck.
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