When you struggle for so long with something that's basically part of you, it's almost certain this will also affect the way you relate to others. So many things that are absolutely normal for the able bodied population have the annoying property of becoming intricate philosophical questions when you couple them with a disability. No wonder common facts of life such as love and sex which can be potentially screwed up for everyone will reach a whole new level of complexity when combined with disability.
Problem is human nature in us doesn't really care much. So it grants us with the very same urges, desires and emotions on one hand. On the other, the rest of mankind don't really feel we should be part of this equation. Some don't even see us as humans to begin with. The results are very often harming for the disabled individual.
Even in my newborn activist frame of mind, it would be a bit too biased from me not to acknowledge this extra difficulty can yield good fruits, although these aren't usually enough to defy our hunger. And even if this bright side is actually available to be enjoyed, it can also widen the gap between a disabled person and his/her able bodied friends or lovers.
After all, first step for a disabled person to lead a good emotional life is paradoxically to embrace own differences. This can demand a huge effort, since the more inserted the person has been in regular society, the more he/she will share the values and points of view of that dominant society. This will happen regardless of the fact doing so will split this person in half and create and nurture an enemy that will live within her/his own skin as a powerful parasite.
That explains why it can be so difficult for disabled people to reach the state of self-awareness (and why if applied with diligence, meditation can do the trick). However, once reaching this state of clarity, there will also be the matter of what to do with that new vision. Although liberating someone from the notion of being guilty for all the achievements that never came, despite of serious and constant efforts, there's also the sad part of acknowledging some of the most prosaic human dreams will possibly never come true.
Furthermore there's also the transition matter. Because when you don't get what you want despite making twice, three times as much effort as the guy sitting by your side in University makes, you tend to become a bit bitter and sauer. For that you might blame yourself, the world or both. Or you can just get confused and mentally distressed, with no clear direction in life. Plus, if the condition behind disability is medically stable and yet incurable, you don't have much hope of things getting actually better.
So embracing the mentally ill identity can be an effective mechanism for denying what's really the root cause of pain, while providing much needed company in hardship, affection, friendship and sometimes even love. But realizing who you are and where your problems concretely come from can also demolish this interim identity you've embraced for the lack of a more socially acceptable one. The consequences? If you have bonded to many people because of that, chances are these bonds also tend to be eroded or even demolished altogether.
And what about love? Well, in the hard circumstances it managed to be born and blossom at all, this internal change has also the potential to destroy what has been the common ground in life that fed love in the first place. I must say it's very tempting to utilize your own experience as an evangelization weapon and to make your loved one realize she/he is also trapped in illusions created by their own mind to protect them from a truth that can be both liberating and also highly destructive and disruptive.
I've been resisting these truths for all my life (33 years). So I guess it's fair to expect resistance in people we love will also be very hard to beat. Then again I arrive at the same end of the road I've already found before in my quest for changing social mindset about disability. Because this is an example of exactly the same issue found when one wants to make anyone else change his/her mind about a dear and old belief. Some people will find it easy, some won't, and some won't even want to taste the change at hand. Which leaves me with the same old two options: stop already or keep pushing.
In the case of society at large, the answer is really easy for me to give once I've identified my goal. But when it comes to your love, I've got to admit it's much less straightforward and it feels a bit like life did before I've accepted to be myself. It's hard. Your muscles are swollen and your heart is pumping fast. However it may well be time for holding your horses. Because the road ahead hasn't been built yet.
Sunday, July 27, 2014
Tuesday, July 22, 2014
Disability and Mindfulness - A necessary combination - Part I
I've written an essay about how Headspace helped me finally bringing meditation and mindfulness to my daily life. While I probably have much more to share on that particular journey, I'd like to draw the attention to where my interest in meditation began. If you go back a few texts in the blog, you'll realize that I've been through a deep interior change which the most fundamental aspect was identity building.
In this first part of the text I'll concentrate on the traditional treatment options used for relieving mental distress associated to physical disability, particularly cerebral palsy. In part II, I'll talk about much higher effectiveness and duration meditation and mindfulness can have in dealing with the same problems under CP context and what are the most common challenges that need to be tackled in order for these resources to be successfully incorporated to one's lifestyle.
So, to make a long story short, (and I apologize to those that have already read about that, but repetition is very important when proposing a very different point of view from mainstream), rehabilitation process I've been through because of the cerebral palsy experienced when I was born back in 1981 has made it impossible for me to accept disability as a part of my personal integral identity (for more details read Criticism and self criticism). And since the exact same rehabilitation method and logic has been used with hundreds of thousands of people around the globe (since cerebral palsy affects up to 4 children from every 1000 born alive), the same identity issue potential dimension is quite huge since population has increased from 4,5 to 7,2 billion in these 33 years, and about 500MM people have died in the same period. Thus resulting in approximately roughly 3,2 billions births.
The hard fact is this identity problem, which is primarily caused by a social phenomenon rather than a medical one, is very likely to cause a lot of emotional distress. No surprise depression and anxiety are considered common co-morbidities to cerebral palsy (UCP article and references here). But my claim is that the usual reading of the situation is absurd. Not because the conditions don't frequently occur together. They definitely do.
What I argue about is actually the interpretation of these symptoms as a sign of bad mental health. How on Earth could depression and anxiety be considered a sign of poor mental health under these terrible life circumstances? I feel the truth is exactly the opposite. Being in a very disadvantageous social situation, that constantly threat your present and future total well-being because of a physical condition, while having full cognitive capacity to understand what is really going on in your surroundings, should be considered a sign of being very reasonable and sane. But again in these respects, society casts the problem back on the disabled person and his/her family. Apart from disability stigma, the person will then also have to carry the mental health related one.
However, this wrong conclusion usually leads to poor measures to fight the emotional distress, even when making people feel better the real final intent. Most drugs for treating depression and anxiety are central nervous system stimulants. And in the presence of a CNS lesion, it's very common that these drugs side-effects will be very much augmented (in a way that's very unpredictable). Which means that if it's already difficult and time consuming for a psychiatrist to find the best medicine to help treating someone who is able-bodied (because underlying depression mechanism isn't really currently known and treatment is a great deal of trial and error), successfully treating someone with CP is even much harder.
And the problems don't stop there. Not only the effectiveness of these drugs is lower for these patients but so is their tolerance for these drugs standard doses. On the other hand, the environmental stressors (frequency and intensity of life situations feeding the underlying condition) are much stronger. Since brain lesion physical condition cannot be significantly improved after a certain young age (when the person with CP stops growing), depression and anxiety tend to also become chronic.
Then, besides the messed up drugs situation, one also has to face the inadequacy of psychological common clinical practice. Basically the so called deep psychology relies entirely on a "normal" psychological development model and path to explain the deviations and the full spectrum of mental illness. The tragic detail here is that disabled people usually suffer from many sorts of social exclusion, which effectively prevent these people from following the standard development path. Thus, traditional psychotherapy has the potential to be a threat to mental wellbeing, since this state is only conceived when the individual manages to self-provide all the relevant social development situations needed for him/her to become a healthy adult (especially affective and sexual ones).
Good news here is that this therapeutic model was very much possible and even plausible in the end of 19th century, in which none of the modern image diagnostic tools were available. And even today, the lack of distinctive image diagnostic methods specifically targeted at mental illnesses such as anxiety and depression still leaves a lot of room for very primitive treatment regimes, including drug trial and error therapies and even worse, these old psychotherapy techniques that are not the subject to any form of objective performance management systems.
I really want to study all that in depth, so I can make a scientific difference in the way people with CP and other CNS lesions are usually treated for anxiety and depression. But for now I want to focus on what can really bring lasting relief and well-being and why I think that's the case based on everything I said above. Stay tuned for that in part II.
In this first part of the text I'll concentrate on the traditional treatment options used for relieving mental distress associated to physical disability, particularly cerebral palsy. In part II, I'll talk about much higher effectiveness and duration meditation and mindfulness can have in dealing with the same problems under CP context and what are the most common challenges that need to be tackled in order for these resources to be successfully incorporated to one's lifestyle.
So, to make a long story short, (and I apologize to those that have already read about that, but repetition is very important when proposing a very different point of view from mainstream), rehabilitation process I've been through because of the cerebral palsy experienced when I was born back in 1981 has made it impossible for me to accept disability as a part of my personal integral identity (for more details read Criticism and self criticism). And since the exact same rehabilitation method and logic has been used with hundreds of thousands of people around the globe (since cerebral palsy affects up to 4 children from every 1000 born alive), the same identity issue potential dimension is quite huge since population has increased from 4,5 to 7,2 billion in these 33 years, and about 500MM people have died in the same period. Thus resulting in approximately roughly 3,2 billions births.
The hard fact is this identity problem, which is primarily caused by a social phenomenon rather than a medical one, is very likely to cause a lot of emotional distress. No surprise depression and anxiety are considered common co-morbidities to cerebral palsy (UCP article and references here). But my claim is that the usual reading of the situation is absurd. Not because the conditions don't frequently occur together. They definitely do.
What I argue about is actually the interpretation of these symptoms as a sign of bad mental health. How on Earth could depression and anxiety be considered a sign of poor mental health under these terrible life circumstances? I feel the truth is exactly the opposite. Being in a very disadvantageous social situation, that constantly threat your present and future total well-being because of a physical condition, while having full cognitive capacity to understand what is really going on in your surroundings, should be considered a sign of being very reasonable and sane. But again in these respects, society casts the problem back on the disabled person and his/her family. Apart from disability stigma, the person will then also have to carry the mental health related one.
However, this wrong conclusion usually leads to poor measures to fight the emotional distress, even when making people feel better the real final intent. Most drugs for treating depression and anxiety are central nervous system stimulants. And in the presence of a CNS lesion, it's very common that these drugs side-effects will be very much augmented (in a way that's very unpredictable). Which means that if it's already difficult and time consuming for a psychiatrist to find the best medicine to help treating someone who is able-bodied (because underlying depression mechanism isn't really currently known and treatment is a great deal of trial and error), successfully treating someone with CP is even much harder.
And the problems don't stop there. Not only the effectiveness of these drugs is lower for these patients but so is their tolerance for these drugs standard doses. On the other hand, the environmental stressors (frequency and intensity of life situations feeding the underlying condition) are much stronger. Since brain lesion physical condition cannot be significantly improved after a certain young age (when the person with CP stops growing), depression and anxiety tend to also become chronic.
Then, besides the messed up drugs situation, one also has to face the inadequacy of psychological common clinical practice. Basically the so called deep psychology relies entirely on a "normal" psychological development model and path to explain the deviations and the full spectrum of mental illness. The tragic detail here is that disabled people usually suffer from many sorts of social exclusion, which effectively prevent these people from following the standard development path. Thus, traditional psychotherapy has the potential to be a threat to mental wellbeing, since this state is only conceived when the individual manages to self-provide all the relevant social development situations needed for him/her to become a healthy adult (especially affective and sexual ones).
Good news here is that this therapeutic model was very much possible and even plausible in the end of 19th century, in which none of the modern image diagnostic tools were available. And even today, the lack of distinctive image diagnostic methods specifically targeted at mental illnesses such as anxiety and depression still leaves a lot of room for very primitive treatment regimes, including drug trial and error therapies and even worse, these old psychotherapy techniques that are not the subject to any form of objective performance management systems.
I really want to study all that in depth, so I can make a scientific difference in the way people with CP and other CNS lesions are usually treated for anxiety and depression. But for now I want to focus on what can really bring lasting relief and well-being and why I think that's the case based on everything I said above. Stay tuned for that in part II.
Saturday, July 19, 2014
Celebrating 1000 views
This blog has come out of a willingness to write about pressing issues in my personal life. I had just went through the thirty years old milestone, and it has become evident that despite very constant, intense and exhausting efforts, my life journey wasn't at all taking me where I thought it would. I've blamed myself for that (very jewish behavior I guess). Considering my education, social and economic background, my deep troubles getting a more or less stable position in common social institutions (formal ones like professional occupation and informal ones like friendships and other voluntary affiliations) didn't make any sense. I felt ashamed.
The blog was primarily an exercise to get a bit of distance and perspective from these thoughts and feelings (and hopefully getting more insight about what I was doing wrong). This time it wasn't an attempt to share the pain and gain external sympathy, affection, comfort.
However, all of a sudden, it has become clear my journey in this world was quite similar to the ones of many other people everywhere. For almost my entire existence I've been unable to perceive these similarities. But as a matter of fact, like me, these people very often also felt completely lonely and confused.
After this A-Ha moment, the blog has become my best response to that encounter with truth. And I'm very happy because not only I'm not lonely anymore, but I've also found a higher purpose to my tiny little insignificant life, as is. Creating light to guide me in the previously dark road of my life will hopefully also illuminate all these folks'. As I believe we were lost and lonely for very similar reasons, I guess a shock of awareness can set us all free. This is a damn great reason to celebrate a thousand accesses. But I really want to multiply that by at least 7 million and the reason why I think that's possible is the fact that in the end what I've found concerns every single human being on Earth.
Maybe my father is right and humanity will eventually get better at caring for everybody after stumbling and tripping wildly over each other repeatedly. As for myself, I'm in favor of a less chaotic and random approach. I'll be struggling for building it, one day at a time.
The blog was primarily an exercise to get a bit of distance and perspective from these thoughts and feelings (and hopefully getting more insight about what I was doing wrong). This time it wasn't an attempt to share the pain and gain external sympathy, affection, comfort.
However, all of a sudden, it has become clear my journey in this world was quite similar to the ones of many other people everywhere. For almost my entire existence I've been unable to perceive these similarities. But as a matter of fact, like me, these people very often also felt completely lonely and confused.
After this A-Ha moment, the blog has become my best response to that encounter with truth. And I'm very happy because not only I'm not lonely anymore, but I've also found a higher purpose to my tiny little insignificant life, as is. Creating light to guide me in the previously dark road of my life will hopefully also illuminate all these folks'. As I believe we were lost and lonely for very similar reasons, I guess a shock of awareness can set us all free. This is a damn great reason to celebrate a thousand accesses. But I really want to multiply that by at least 7 million and the reason why I think that's possible is the fact that in the end what I've found concerns every single human being on Earth.
Maybe my father is right and humanity will eventually get better at caring for everybody after stumbling and tripping wildly over each other repeatedly. As for myself, I'm in favor of a less chaotic and random approach. I'll be struggling for building it, one day at a time.
Wednesday, July 16, 2014
Different agendas. Why is integration so difficult? (part 4) the mindset challenge
And without knowing, my text about meditation has provided one of the main reasons why this integration process is so difficult. As I said before, practical conditions even very qualified disabled people encounter at the workplace are still far from good. They often also suck in other dimensions of life. As I've mentioned, several of these barriers are invisible, because the environment creates an adverse selection of those capable of hiding their difficulties and differences. It does that by rewarding this conduct in the short term with partial integration opportunities (which obviously exclude the medically so-called more severe disability cases).
Don't get me wrong. Acknowledging this mechanism is key to find a solution to the problem (if one really wants to). Unfortunately, it's only the beginning, since the mere understanding of this reality won't bring its automatic solution. Even if all the people in charge of big corporations hiring and firing would read my texts and even if they would agree with all the claims I'm making here, change wouldn't magically happen because there are tacit truths about people with disabilities that carry along a huge and often invisible weight, as much as all the tons of air we have on us all the time. Which makes me end this series about integration in low key (sorry about that).
As much as I and all the other disabled people in the world desperately need change for leading a good life, there's too much history to be untold. All the human organizations (as well as the other biological systems) tend to resist change to keep their internal structure, despite of environmental stimuli. Which means, as for meditation, that social change, which is the true cure to disability, will demand time and lots of persistence.
Don't get me wrong. Acknowledging this mechanism is key to find a solution to the problem (if one really wants to). Unfortunately, it's only the beginning, since the mere understanding of this reality won't bring its automatic solution. Even if all the people in charge of big corporations hiring and firing would read my texts and even if they would agree with all the claims I'm making here, change wouldn't magically happen because there are tacit truths about people with disabilities that carry along a huge and often invisible weight, as much as all the tons of air we have on us all the time. Which makes me end this series about integration in low key (sorry about that).
As much as I and all the other disabled people in the world desperately need change for leading a good life, there's too much history to be untold. All the human organizations (as well as the other biological systems) tend to resist change to keep their internal structure, despite of environmental stimuli. Which means, as for meditation, that social change, which is the true cure to disability, will demand time and lots of persistence.
Healing effect of conscience and patience
The moment you experience a great improvement on your subjective quality of life, without any meaningful change in your practical conditions, is ideal for reflection and to draw somewhat clear conclusions about what you've been doing to get that result. And besides sharing my thoughts in this blog, I've been meditating non-stop for the last month and a half or so. I've always believed meditating could be very beneficial, because it has been scientifically tested (using functional MRI). Anxiety drops, concentration improves, there's much more mental clarity and even happiness. However, for you to feel these benefits mentioned everywhere, it's necessary to persist for a certain variable period of time.
I used to be really anxious most of the time, which made it really hard for me to stop and sit with my thoughts and feelings for a brief while (even 10 minutes). Plus I was too often worried about how well I was meditating. Thus I used to obsess I couldn't feel any of the benefits because I was doing it wrong. However I've kept trying new courses, music, podcasts, you name it! But for some reason it was really hard to keep the meditation routine.
The reason for the big change was satisfaction of the need for gradual transition. What has solved the matter for me was an app called Headspace. It's funny to say that, but I think this was the first time the author of a meditation method really took the meditation mindset into consideration in its development. In other words, this program has included a great deal of information about meta-meditation, meaning all the conditions and internal situations that can help or disturb the building of your habit of meditating. It's very interesting to observe how deeper this guy went on assessing all the possible difficulties and feelings people would face in meditation, even in several different levels of expertise.
Yes, principles of meditation are really simple. Actually they are so simple it can be quite frustrating not to be able to master them in a reasonably short time. Problem is that these principles go in the exact opposite direction of everything we learn to do mentally for living successfully in the western civilization.
Therefore, it shares the intrinsic difficulties of overcoming a mindset you're not even aware of. Suppose you've lived in a social context that accepted the Earth was the center of the Universe. This idea also works for explaining the most basic and observable astronomic phenomena. However, more careful observations will demonstrate that assumption is basically wrong. But besides grasping the arguments and facts that prove this point, people have to struggle with a certain social mental inertia.
Post relativity theory folks usually feel very enlightened from birth, which makes them a really easy pray for this mental inertia trap. So it's not really surprising that someone who is eminently western in education will have a great deal of difficulty in practicing meditation, even when realizing the underlying principles make a lot of sense.
Headspace creator has been very smart in starting by explaining the proposed journey into this activity using many figures of speech to convey the meditation principles. This is very useful because it brings the eastern and the western mindsets closer to each other. It actually uses western common facts of life for building analogies that function like bridges or stairs to reach a different higher perspective.
Another advantage is that, different from most self-study meditation methods, it provides company and guidance. More than that. It offers a gradual framework for you to transition from your initial super anxious and tense western mental background to something else. So you have the chance to experience small steps with which you get increasingly comfortable and gradually practice different aspects of a mental life you sometimes didn't even know existed. This is very common in physical training, but it has been brilliantly applied in training the mind instead.
Because of all these characteristics, the method helps you to build a habit quite quickly. And then your brain basically does the rest, because it absolutely loves habits and routines and often forgets about the time when you didn't have the habit yet. Then the benefits start showing up. Somehow timidly in the beginning. Then all of a sudden, you're able to naturally handle the most difficult issues in your life.
There are basically two conclusions to be reached here. First one is that no matter how obvious a method, a fact or a process really is, rationally explaining it, or even providing hard evidence to prove it's valid doesn't necessarily generate a deep level of understanding and acceptance. The second concerns both my own journey into self-acceptance and the one I really want to bring the rest of the world along with me. The fact is it took me more than thirty years to understand my life in a different perspective, even though that perspective really makes a lot of sense for me, especially at the personal level.
But even if this new perspective about disability at large makes total factual sense, and my strong belief I have all the right arguments to convince people around me to incorporate it, this might take a while. That said, I'm under the impression it can become faster and more efficient if meditation becomes a habit for more and more people.
I used to be really anxious most of the time, which made it really hard for me to stop and sit with my thoughts and feelings for a brief while (even 10 minutes). Plus I was too often worried about how well I was meditating. Thus I used to obsess I couldn't feel any of the benefits because I was doing it wrong. However I've kept trying new courses, music, podcasts, you name it! But for some reason it was really hard to keep the meditation routine.
The reason for the big change was satisfaction of the need for gradual transition. What has solved the matter for me was an app called Headspace. It's funny to say that, but I think this was the first time the author of a meditation method really took the meditation mindset into consideration in its development. In other words, this program has included a great deal of information about meta-meditation, meaning all the conditions and internal situations that can help or disturb the building of your habit of meditating. It's very interesting to observe how deeper this guy went on assessing all the possible difficulties and feelings people would face in meditation, even in several different levels of expertise.
Yes, principles of meditation are really simple. Actually they are so simple it can be quite frustrating not to be able to master them in a reasonably short time. Problem is that these principles go in the exact opposite direction of everything we learn to do mentally for living successfully in the western civilization.
Therefore, it shares the intrinsic difficulties of overcoming a mindset you're not even aware of. Suppose you've lived in a social context that accepted the Earth was the center of the Universe. This idea also works for explaining the most basic and observable astronomic phenomena. However, more careful observations will demonstrate that assumption is basically wrong. But besides grasping the arguments and facts that prove this point, people have to struggle with a certain social mental inertia.
Post relativity theory folks usually feel very enlightened from birth, which makes them a really easy pray for this mental inertia trap. So it's not really surprising that someone who is eminently western in education will have a great deal of difficulty in practicing meditation, even when realizing the underlying principles make a lot of sense.
Headspace creator has been very smart in starting by explaining the proposed journey into this activity using many figures of speech to convey the meditation principles. This is very useful because it brings the eastern and the western mindsets closer to each other. It actually uses western common facts of life for building analogies that function like bridges or stairs to reach a different higher perspective.
Another advantage is that, different from most self-study meditation methods, it provides company and guidance. More than that. It offers a gradual framework for you to transition from your initial super anxious and tense western mental background to something else. So you have the chance to experience small steps with which you get increasingly comfortable and gradually practice different aspects of a mental life you sometimes didn't even know existed. This is very common in physical training, but it has been brilliantly applied in training the mind instead.
Because of all these characteristics, the method helps you to build a habit quite quickly. And then your brain basically does the rest, because it absolutely loves habits and routines and often forgets about the time when you didn't have the habit yet. Then the benefits start showing up. Somehow timidly in the beginning. Then all of a sudden, you're able to naturally handle the most difficult issues in your life.
There are basically two conclusions to be reached here. First one is that no matter how obvious a method, a fact or a process really is, rationally explaining it, or even providing hard evidence to prove it's valid doesn't necessarily generate a deep level of understanding and acceptance. The second concerns both my own journey into self-acceptance and the one I really want to bring the rest of the world along with me. The fact is it took me more than thirty years to understand my life in a different perspective, even though that perspective really makes a lot of sense for me, especially at the personal level.
But even if this new perspective about disability at large makes total factual sense, and my strong belief I have all the right arguments to convince people around me to incorporate it, this might take a while. That said, I'm under the impression it can become faster and more efficient if meditation becomes a habit for more and more people.
Saturday, July 12, 2014
Different agendas. Why is integration so difficult? (part 3) Disabled talent supply and demand
This is the first issue a company faces when making the first incursions through disabled people hiring. By the way, I guess it's not a secret that this has only begun to happen at all because affirmative action laws have forced enterprises of a certain size to hire disabled people as part of their workforce.
Companies feel this request from the state is unfair because of a simple fact: while there's a large population with disabilities (worldwide), there are very few disabled people that have managed to get good formal education. And this is the first filter any company applies for selecting candidates. This is a factual truth and there's little a company can do to change this reality in the short term.
So why put that burden on companies? Because companies extract their profits from society and inclusion is eminently a social responsibility. Plus, companies and their higher level employees usually claim they are much more efficient and less corrupt than the State. So that's an additional reason for having private companies handling the matter.
Conclusion to this topic is there are really not enough qualified disabled people out there (especially in Brazil) to make up the sum of all the companies quotas. Yes, that creates a real and economically impacting issue for the companies. And I think that's much more fair than leaving the burden of unemployment on disabled people and their families, which by the way correlate quite well with poverty statistics.
But that raises a question I don't quite get, and it's also about supply and demand. If fines for not complying with hiring quotas are substantial as companies claim, and if qualified individuals are so rare in the target population, why don't we see any sign of inflation on wages employed disabled people have? Good topic for next part. Stay tuned!
Companies feel this request from the state is unfair because of a simple fact: while there's a large population with disabilities (worldwide), there are very few disabled people that have managed to get good formal education. And this is the first filter any company applies for selecting candidates. This is a factual truth and there's little a company can do to change this reality in the short term.
So why put that burden on companies? Because companies extract their profits from society and inclusion is eminently a social responsibility. Plus, companies and their higher level employees usually claim they are much more efficient and less corrupt than the State. So that's an additional reason for having private companies handling the matter.
Conclusion to this topic is there are really not enough qualified disabled people out there (especially in Brazil) to make up the sum of all the companies quotas. Yes, that creates a real and economically impacting issue for the companies. And I think that's much more fair than leaving the burden of unemployment on disabled people and their families, which by the way correlate quite well with poverty statistics.
But that raises a question I don't quite get, and it's also about supply and demand. If fines for not complying with hiring quotas are substantial as companies claim, and if qualified individuals are so rare in the target population, why don't we see any sign of inflation on wages employed disabled people have? Good topic for next part. Stay tuned!
Different agendas. Why is integration so difficult? (part 2) Hidden disadvantages and hardship
Alright, let's explore the first hypothesis: First insight I want to bring is to look into the recent past. Not excluding disabled people from collective life altogether is a very recent idea. It has started as a tiny spark in the 70's and it has reached mainstream thoughts in the last 20 years, tops. And it's still restricted to some portions of collective life.
By no means society currently really means to include the disabled in all of them (how many disabled TV, movie and music stars can you recall? What about CEOs, or C-level executives at large? Supermodels? High level politicians?) I believe this is a powerful beginning to the answer about integration in the work environment. Companies hire people. Complex human beings, with complex lives beyond the workplace. And the fact is that even if life at work has all the elements and conditions to function (which is rarely the case by the way), it's very likely other life conditions will have a negative spillover onto the work sphere. Everyone knows how difficult life events do affect one's ability to do a job. Can you imagine the effect of these events happening on a daily basis, no estimate date to stop? Are companies willing to deal with this dark side? Statistically, it's likely part of the disability package.
I guess everyone knows the answer here.
In the next part I'll further explore disabled talent supply and demand idea. But please make a comment if you want to read more about each of these individual topics.
By no means society currently really means to include the disabled in all of them (how many disabled TV, movie and music stars can you recall? What about CEOs, or C-level executives at large? Supermodels? High level politicians?) I believe this is a powerful beginning to the answer about integration in the work environment. Companies hire people. Complex human beings, with complex lives beyond the workplace. And the fact is that even if life at work has all the elements and conditions to function (which is rarely the case by the way), it's very likely other life conditions will have a negative spillover onto the work sphere. Everyone knows how difficult life events do affect one's ability to do a job. Can you imagine the effect of these events happening on a daily basis, no estimate date to stop? Are companies willing to deal with this dark side? Statistically, it's likely part of the disability package.
I guess everyone knows the answer here.
In the next part I'll further explore disabled talent supply and demand idea. But please make a comment if you want to read more about each of these individual topics.
Different agendas. Why is integration so difficult? (part 1) Introduction
Sometimes it's not simple to understand why it's so hard to successfully promote diversity through disability inclusion in for profit organizations environments (and in non profit ones as well). In the surface, disabled people and companies really have totally compatible agendas: enterprises are interested in having more diverse people in the workforce (because of hard evidence it's beneficial for innovation and growth), happily integrated and contributing to the end goal of the organization whereas disabled people want meaningful jobs, steady income sources and chances to progress in life by being instrumental to other people through work. So why is that difficult to get things done here?
I don't think I can give a definitive answer in a short enough text. So I'll break it into shorter pills, and hopefully we'll get there eventually. Stay tuned!
I don't think I can give a definitive answer in a short enough text. So I'll break it into shorter pills, and hopefully we'll get there eventually. Stay tuned!
Sunday, July 6, 2014
Running against time
First question: is it an exageration to say humanity is in crisis? I find that doubt quite (tragically) funny. Because if the answer is "yes", probably 98% of people everywhere are concentrating on the wrong things in their lives. And if the answer is "no", then one can be absolutely sure that there's too much air time and space in papers, magazines and internet dedicated to that issue, because it's not that bad after all. Plus these guys from press would be deliberately missinforming people, which is something terrible if the subject is human existence being soon swept from the face of the Earth.
Second question is how can we doubt about our own iminent extinction as a species, and still hear all sorts of bullshit everyday and doing nothing about the (possible) real problem?
I don't have the answers at this point. And even if I did, it wouldn't probably make that much of a difference because I'm no one, and people need reassurance from experts and geniuses. Problem is even these guys don't agree enough to alert the rest of us about the best course of action to take.
Apparently the catastrophic forecasts are quite likely to happen as soon as in a few decades (which is not lots of time even in the insignificantly short human lifespan). So let's suppose we are in the midst of a crisis and that no genius in charge is currently capable to outline a feasible solution. This has a powerful implication about human beings and especially society.
Because in a situation like that, I think it would be basically rationale to want to have as many heads possible thinking about a solution and timely implementing it. So my third question is: can we afford to loose brains that could help us get out of this mess (that apparently we've made ourselves)?
I think the logical answer is a clear no. And that's absolutely incompatible to excluding physically disabled people from society, so they can't realize their full intelectual potential. Because those could be the very brains to help us all out of the path for destruction.
So if you don't really care about disabled people themselves, be selfish! Think about yourself, your existence and that of all your loved ones. The brain that could take you all to a safe spot from disaster can be that of the guy in the wheelchair. He would normally just be left alone, isolated at some dark corner because he's not similar enough to everybody else.
But again, usually people that are similar enough also have similar enough ideas and thoughts. And so far, none of these were able to clearly tell how endangered humans really are or worse yet, come up with any good solution in case we are really screwed.
So forget about inclusion for doing good to others. Advocate for inclusion to save your own precious ass!
Second question is how can we doubt about our own iminent extinction as a species, and still hear all sorts of bullshit everyday and doing nothing about the (possible) real problem?
I don't have the answers at this point. And even if I did, it wouldn't probably make that much of a difference because I'm no one, and people need reassurance from experts and geniuses. Problem is even these guys don't agree enough to alert the rest of us about the best course of action to take.
Apparently the catastrophic forecasts are quite likely to happen as soon as in a few decades (which is not lots of time even in the insignificantly short human lifespan). So let's suppose we are in the midst of a crisis and that no genius in charge is currently capable to outline a feasible solution. This has a powerful implication about human beings and especially society.
Because in a situation like that, I think it would be basically rationale to want to have as many heads possible thinking about a solution and timely implementing it. So my third question is: can we afford to loose brains that could help us get out of this mess (that apparently we've made ourselves)?
I think the logical answer is a clear no. And that's absolutely incompatible to excluding physically disabled people from society, so they can't realize their full intelectual potential. Because those could be the very brains to help us all out of the path for destruction.
So if you don't really care about disabled people themselves, be selfish! Think about yourself, your existence and that of all your loved ones. The brain that could take you all to a safe spot from disaster can be that of the guy in the wheelchair. He would normally just be left alone, isolated at some dark corner because he's not similar enough to everybody else.
But again, usually people that are similar enough also have similar enough ideas and thoughts. And so far, none of these were able to clearly tell how endangered humans really are or worse yet, come up with any good solution in case we are really screwed.
So forget about inclusion for doing good to others. Advocate for inclusion to save your own precious ass!
Thursday, July 3, 2014
Yesterday
This new stage of my journey is granting me some unexpected fruits, by which I'm kind of happy about. Lately I've been studying my theoretical condition quite a lot, but in a slightly different way than I've always done. I have this disability (cerebral palsy, which I'll call CP for saving time) but I'm also a geek that works for Google.
And I've been a geek for quite some time, being engaged with the internet (and even more primitive computer networking types like BBSs) since they first became available in Brazil (which happens to be where I was born and raised). I have to say that probably among the first ideas I've had about the internet and search engines was that I'd be able to find the cure somewhere. That can be kind of illogical from the medical standpoint, but the naïve impression the internet gives you is that the world has finally become accessible at your convenience.
It's really hard to believe that this disorder of mine doesn't have a cure anywhere in the world! Come on! In Brazil it's very common to think things are better in the really rich countries, because regarding loads of aspects that's actually true. It's kind of thinking about those math problems in which the solution depends on the scope, and the function may have different global and local maximum values. I guess many of us tend to think we live with the local maximum solutions of the functions of life, but there must be something better out there. Harvard, Johns Hopkins, anybody?
Nope. No cure at this time. Some experimental treatments. Some speculation around stem cells. A lot of theoretical possibilities, but it's frustrating how tough it's for finding something new for CP. Still there are people selling stuff they can't deliver as usual. If it was contagious, people would probably be generally more concerned, and incentives to create new treatments would be much higher. That's the paradox with relatively benign conditions. They won't kill you, only maybe the life you wanna live.
Funny how people are obsessed with death. We're all going there sooner or later. But it's the biggest deal ever! And at the same time we screw the environment which can probably kill us as a species. I don't really get people...
Enlightening versus reality
I'm pretty certain to say last 3 months were an internal revolution. My degree of awareness about myself and my surroundings has grown exponentially. But today, facing the same reality now I know doesn't support my true existence, has brought me a whole new dilemma. What do we do with this extra awareness? How do we cope with situations we already know are not fair, or right or even moral if all these concepts are human constructs that have already changed enormously overtime? Will they be different before I die?
It's pretty clear to me per research data that exclusion is a factual reality in disability. For my specific subtype I even have the figures in my head and they are not pretty at all. And it's also crystal clear how this process has operated in my life on a daily basis for more than 30 years. That means I've got more than 30 years of concrete examples in which it has happened as a comic act, repeated ad infinitum.
Now I even have the theoretical framework through which the whole thing has repeated over and over again. The question is: once you see a train is coming and you know it will hit a car full of people that unfortunately has got a dead engine right in the middle of the crossing, what should you do?
Maybe more important than that, can you hate someone for letting disaster happen because of inability to see the train? I've got this newly discovered moral framework which this person clearly ignores. What if what this subject is doing is completely compliant with the tacit and explicit laws that govern current society? It may seem quite superfluous at this miserable point as my energy gets completely drained with the tragedy I'm the only one who see. But I don't want to be unfair and immoral myself.
Am I living the last breaths of a dyeing pathological false mainstream identity, like that of people suffering from Stockholm Syndrome and defending their violent captors? Or am I trying to be a better person and not trigger the sort of suffering I'm going through because social acceptable standards are not yet on my side? I wanted out.
When I was younger, maybe because my teen years were not fulfilling at all, I used to feel I was born at the wrong time in history. A sort of too old to rock'n'roll and too young to die kind of mood. I wanted out. Today I was driving my car in the heavy traffic of this chaotic and crowded city and I felt the same urge to escape from this dimension. Again, it felt as if I was really claustrophobic. But the air conditioning was turned on, I was listening to good music, sitting comfortably and yet I felt I was going to drown in this air, this century, this city, this world.
I've had a flashback and recalled feeling the same way sometimes when I was very little, like 2 or so. And while I don't remember the reason that made me feel like that at the time, I can surely tell it was exactly the same feeling. The feeling of being expelled from the face of the Earth by the wrong shape of my own flesh. The feeling of inadequacy that I now recognize so well, but that at the time was just a raw and empty sense of doom.
And I remember understanding my body was ruined and there wasn't anything that would make me get better. The thoughts that would come from this conclusion were articulating the wish of not have being born at all, which is quite sophisticated, but very sad for a three year old kid to grasp. Twisting the time in my head was the only way to repair my broken body, and in the concrete impossibility of that, escaping from Earthly existence through a window in time seemed to be the correct answer.
So today when I was in the car, I've realized that I wasn't feeling claustrophobic because of the present traffic noise and smell. My feeling came from the fact that, as with my broken body, this city feels sick beyond repair and it tends to get its arteries increasingly clotted with cars, and people and in a noisy crack it will eventually collapse under its own weight. And again at that precise moment, there was nothing for me to do about that. Same as there's still nothing I can do thirty years later about my body. My vessel through this human existence. It's still treated as broken, and navigating the one way stream of time, the only thing it can do is to get old, without never having tasted the clear and calm waters of youth.
But today was a different day. Not because my daily problems at work were solved or because I've finally become something good in the collective eyes of consumption driven society which I live to serve. Today was a different day because for the first time in more than 30 years, there was a tiny space that separated myself from the broken image I've been cursed with from the start. The accompanying voice saying I was a mistake wasn't mine anymore. I felt the warmth of the good intentions of my curse, and that I even have something to be grateful about.
Because my body is not my curse. It has actually handled all these attacks from inside and out relatively well. Then I've realized I don't have to free myself from my body, or from this city, or this world. My body can be the means through which I can and will do something truly remarkable. Not because able bodied people surrounding me will tell my salvation depends on being a hero for climbing the stairs. Or because I'll be accepted by them for whom I really am and my material life will change for the better. Truth is the opposite.
For once I felt I'll be precisely at a place I've always wandered about in my dreams. A tiny portion of Earth from which I will be able to see human beliefs start moving, and justice as conceived today furiously swinging as an old tree on a thunderstorm, rocking and twisting, finally falling in a burst of fury. And I will part take in what I've always felt was lost forever. Something that would have made my existence meaningful only if I lived my happy days as someone young, healthy and loved and perfect. But I will be part of real change and the tiny piece of Earth I'll taste it from will be my body.
Wednesday, July 2, 2014
What's the point?
Today I've discussed this blog over lunch. And one of the questions I've got was what was the purpose of it and to whom I was writing for. And while I really love the delightful opportunity to be just spontaneous, there's indeed a purpose here. But I feel that more than a goal, like those that driven people use to set to themselves to get stuff done, the purpose here is most similar to a dream.
The interesting fact is my dream is not original at all. Maybe I could just copy and paste Dr. King's famous speech talking about his, and then in essence, my dream would be quite well illustrated. Here goes a famous part of it:
"I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character." I must say that in essence I also share this dream. This is a dream of equality. This is a dream related to the freedom from being treated as inferior because of an arbitrary physical characteristic that hasn't been chosen by the person at any time, and which within the noble values framework most people claim to personally uphold, shouldn't really matter anyways.
But another part of the same speech reveals a certain ambiguity regarding the very equality that is being rightfully demanded by Dr. King (specifically to the black men) in the 1963 US: "One hundred years later [slavery was abolished], the life of the Negro is still sadly crippled by the manacles of segregation and the chains of discrimination. One hundred years later, the Negro lives on a lonely island of poverty in the midst of a vast ocean of material prosperity."
Dr. King intentionally uses the word "crippled". And although that doesn't change the fact he was one of the greatest people in the last century, this choice reveals a legitimation of yet two other instances of social exclusion. But in 1963, treating disabled people as invalid was the norm, even among the greatest of the men. The use of the word "crippled" enables him to make a key point. That racial prejudice and discrimination imposed such a heavy burden to healthy, able bodied, black men that this was leveling these perfectly capable human beings with disabled (crippled) people, keeping black American citizens from enjoying the wealth that was otherwise widespread in the country at that point in time. Again, what's implicitly claimed is that, in contrast, it's naturally fine to exclude the disabled from the same social good.
In 1963, the white male able bodied US lived a golden age of economic and cultural boom created by the country having become the center of the economic universe after WWII. Something that was accomplished primarily at the expense of poor countries through the world trade economic dynamics. And before that, through the accumulation of capital resulting from, among other things, buying and selling slaves (excluded from the status of humans at the time) to work at monoculture export bound farms. The point Dr. King is quite precisely making is that it's very unfair that black people are excluded from that American collective prosperity because their skins are darker than those from the dominant social group. He has made that claim based on collectively valid moral standards contained in the basic principles established by the constitution and declaration of independence of the USA:"When the architects of our republic wrote the magnificent words of the Constitution and the Declaration of Independence, they were signing a promissory note to which every American was to fall heir."
In other words, the legal framework created for ruling the country just being born in the end of the XVIII century has establish the rights for the citizens of this new country. All of them. Generation after generation. But of course at that point in 1783, that did not include black people. But then Dr. King has himself done something really similar to what the first Americans have done more that a hundred years before. In his speech he mentions "men" most of the time because it was ok to exclude women from this set of principles and certainly it was also fine to exclude the "crippled" people.
But again, I'm not trying to twist history and say that Dr. King was actually some misogynous bastard that also hated and discriminated disabled people. There are only two points I want to make with this analysis:1- Establishing an identity is key for organizing people around a common goal. Excluding other people from this particular group is very useful to forge the idea of belonging and to motivate formerly excluded people to act towards a shared larger social objective.2- This second point is longer and more complex. The theoretical leap is also wider, so hold on tight: medicalization of disability, specially after WWII, and the rehabilitation theories and practices generalized then, have neutralized a lot of the potential of disabled people to unite around common goals because it created a framework in which rehabilitation was the promise to rid the better adapted disabled individuals from "living in an island of poverty in the midst of a vast ocean of material prosperity".
The problem is that, although rehabilitation may deliver part of this promise, it deprives disabled people from having a true natural and positive collective identity. Plus, the very concept of disability presupposes there has to be some residual losses in the ability to fully participate in society for it to manifest. Even though able bodied will generally ignore this residual effect, it will still be there to justify the lower standards of living and quality of life. It will be successfully disguised as part of the meritocracy the dominant members of society believe having established in the most noble and impartial way.
My conclusion here is bitter sweet. Maybe inequality is an innate human characteristic (although I've become a little reluctant to accept monolithic human truths since my disability medical aspect was one of them for me). Perhaps disabled people will get more equality for themselves by exploring human inequality in a socially smart way, as the black people and the LGBT community have done. That's how these two social groups hence now collective occupy a much better position, at least in the western world.
Or maybe human kind as a whole will realize inequality has become a burden too huge on itself, and despite having been highly adaptive in most of the 200,000 years we've inhabited this universe, it's time for us to create a different path towards a huge and inclusive human brotherhood.
So coming back to the target audience of these controversial essays, I'd say I'll better cover all the basis. I'll address disabled people community to foster identity and pride creation. I hope it will promote union and fighting for the rights of this specific group of people I belong to. And I'll also address the other chunk of humanity, just in case they finally come to realize inclusion will truly benefit everybody, abled or disabled.
Tuesday, July 1, 2014
Where has the big change started?
You might not believe, or care, or both that I was as far from a disability activist as George Bush is from Dalai Lama. But I know myself for quite sometime at this point, so my personal judgement should account for something.
Anyways, if you take this statement to be true, it's natural to ask why the hell this happened. Why do you live as someone for more than 30 years and then you just migrate to the end of the sprectrum of many of your previously held values.
Some of this process is already described and written in the posts of this very blog. But one of the things I haven't mentioned yet is a book I've read at some point last year. The author is Daniel Kahneman, a fancy Nobel prize winner. This book is very revolutionary, although I must say usually books don't start any revolution despite the fact they can bring a lot of inspiration to the ones who do.
Anyways, "Fast and Slow Thinking" is a brilliant way to make the complex neuroscientific theory that has awarded the author with the Nobel prize, something that non scientist community can read, understand and appreciate. The book brings some staggering examples of real situations in which the limitations of human perception due to evolutionary adaptations to the cognitive aparatus are the ultimate cause for several judgement errors in life and death decisions made on a daily basis everywhere. And yes, it's a hell of a scientific proof of how inadequate the death penalty really is, but that's not all.
Daniel articulates the two mechanisms working together in every human cognitive process and show how the way they split their workload can lead to very bad decisions (although this very interaction has made humans incredibly adapted to life on Earth since we began to exist as a species about 200000 years ago). Looking back, reading this book was a tipping point in the beliefs I've been cursed with in my rehabilitation process. By getting more insight about human perception, I've concluded that:
1- The notion of disability is also governed by these same parallel cognitive mechanisms.
2- Therefore, probably the judgement the society and I had about my own disability must be the object of these same distortions.
That was the scientific window that has opened in my mind replacing the medical truths about disability planted so deep in my mind and soul so early in my life. My point here is that the impossibility of psychotherapy to act therapeutically on me has everything to do with the fact my mindset about my life and condition was highly scientific because it had a strong medical framework as its backbone.
Therefore, I feel compelled to speculate that rather than treating psychological distress related to disability issues in one's life with deep psychotherapy and the likes, a scientific approach can be much more effective, especially as person that has been rehabilitated in the 80's and 90's. At least it was in my case.
Deep psychology approaches fail because they rely on the individual experiences to outline unhealthy inconscient processes. And the cause for distress is definitely much more related to the social framework instead. Failing to recognize that makes psychologists and doctors treat the disabled person as the sick one, again deviating from the healthy person standard, when in reality society has the disease all along.
That's my short attempt to advocate for a sociological solution for individual disability related distress. Because in my opinion, psychological distress is absolutely healthy if one is the object of conscious social exclusion. It would be indeed a sign of lack of self conciousness and awareness of one's surroundings not to feel crushed by this huge pressure. In other words, a sort of madness.
Anyways, if you take this statement to be true, it's natural to ask why the hell this happened. Why do you live as someone for more than 30 years and then you just migrate to the end of the sprectrum of many of your previously held values.
Some of this process is already described and written in the posts of this very blog. But one of the things I haven't mentioned yet is a book I've read at some point last year. The author is Daniel Kahneman, a fancy Nobel prize winner. This book is very revolutionary, although I must say usually books don't start any revolution despite the fact they can bring a lot of inspiration to the ones who do.
Anyways, "Fast and Slow Thinking" is a brilliant way to make the complex neuroscientific theory that has awarded the author with the Nobel prize, something that non scientist community can read, understand and appreciate. The book brings some staggering examples of real situations in which the limitations of human perception due to evolutionary adaptations to the cognitive aparatus are the ultimate cause for several judgement errors in life and death decisions made on a daily basis everywhere. And yes, it's a hell of a scientific proof of how inadequate the death penalty really is, but that's not all.
Daniel articulates the two mechanisms working together in every human cognitive process and show how the way they split their workload can lead to very bad decisions (although this very interaction has made humans incredibly adapted to life on Earth since we began to exist as a species about 200000 years ago). Looking back, reading this book was a tipping point in the beliefs I've been cursed with in my rehabilitation process. By getting more insight about human perception, I've concluded that:
1- The notion of disability is also governed by these same parallel cognitive mechanisms.
2- Therefore, probably the judgement the society and I had about my own disability must be the object of these same distortions.
That was the scientific window that has opened in my mind replacing the medical truths about disability planted so deep in my mind and soul so early in my life. My point here is that the impossibility of psychotherapy to act therapeutically on me has everything to do with the fact my mindset about my life and condition was highly scientific because it had a strong medical framework as its backbone.
Therefore, I feel compelled to speculate that rather than treating psychological distress related to disability issues in one's life with deep psychotherapy and the likes, a scientific approach can be much more effective, especially as person that has been rehabilitated in the 80's and 90's. At least it was in my case.
Deep psychology approaches fail because they rely on the individual experiences to outline unhealthy inconscient processes. And the cause for distress is definitely much more related to the social framework instead. Failing to recognize that makes psychologists and doctors treat the disabled person as the sick one, again deviating from the healthy person standard, when in reality society has the disease all along.
That's my short attempt to advocate for a sociological solution for individual disability related distress. Because in my opinion, psychological distress is absolutely healthy if one is the object of conscious social exclusion. It would be indeed a sign of lack of self conciousness and awareness of one's surroundings not to feel crushed by this huge pressure. In other words, a sort of madness.
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