Wednesday, November 28, 2012

Nobody cares about this

Given how often Andrew Sutton has been citing my humble entries you could get an impression that I'm a highly regarded source in the world of Cerebral Palsy, Conductive Education and independent living. I think he is far too kind. I would like nothing more than to share my experiences with anybody that listens, speak at events and talk shows, but trust me. My story impresses very few people and my phone has not been ringing off the hook. It's not that that I think I'm amazing or that I seek fame. I've spent many years getting advanced  law degrees so I really don't need to promote myself as a tabloid sensation, but I'm willing to put my time and energy if it helps others and brings attention to the things I care about most: inclusion, opportunities for people with my type of disability and wheelchairs in general, and bringing barriers. I want to talk about hard work, parental dedication and applying yourself. But the problem, I think is bigger than me. I can share the anecdotes from the Peto Institute for many years to come, but it won't change the fact the fact that I think we have failed. We have failed as the Conductive Education community - pupils, conductors, parents, friends and supporters to explain why this is important. Why the media should pay attention. We have failed to show the need in highlighting success Cerebral Palsy stories. What it's like to live with this disability and how very little progress can mean a drastic increase in the quality of life. You may think my story is impressive (I think it's really not, it's simply my story and everyone has one), but the media disagree. In a blatant attempt at self promotion and looking for a way to talk about experiences with CE in a exciting way, I've sent the link to the video with me in it to a number of  TV shows, non profits and news outlets. I know both online copies combined have been played a few hundred times. It's like one of the reporters at a local TV stations told me, when she called me a few weeks ago trying to figure out who exactly I am and how I fit in to this thing. It's interesting and it may be inspiring, but it's not happening, it's not developing, it's not news. Andrew in one of his latest pieces talks about the need for joy, optimism and positive routine. I think we still haven't found a way to talk about these things in a way that explains that example, hope and inspiration are crucial to kids and parents a like. We've got to find a way that uses attractive terms fitting today's media model. But if it's not a miracle, if it's not a cure or a drug or a magic spell, if it doesn't happen over night I doubt that we can make anybody understand. This is exactly the problem that I've had dealing with American immigration. Nobody quite understood why my story of life with Cerebral Palsy and years at the Peto Institute matter and can be helpful to new generations of kids And note one thing: I've been fortunate enough to be featured in local press a number of times. Gainesville Sun wrote about me twice, Alligator dedicated its spread to me, InSite picked me as one of Gainesville's most interesting among others. But it's  not that mainstream media took an interest in what we do all of a sudden. All these texts were written by students. They started as school assignments and the editors were so impressed with the result thry went to print. Claudia Adrien had to fight for every sentence of her story that her publisher wanted to cut. David Cumming saw me at a bus stop and what started as a photo assignment ended up as a feature in the Alligator. Andres Farfan read about me on Facebook, took some pictures and then decided to submit his work to InSite. All these people because their dedication, passion for their work and time and energy to dig deeper brought my story to the public. Because they cared about doing something they found meaningful. And they wouldn't give up when they were told to drop it. But I have yet to be interviewed by a real, grown up reporter. And I guess they really don't know what to do with me. Even the public station only sent their student reporter to the Academy only after I went there a pleaded with their news assignment director. (The segment openly panned by the CE community never aired). For now, Oprah isn't calling and I have always felt that the very hermetic nature of CE world isn't helping. But again, the same is true with any disability initiative. The media may care about me if I build the nonprofit I've been talking about, but how can I build it without the support of the people that first need to hear about me? Maybe it's time to say it. You may care as do I, but the world probably doesn't. Now what?


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  2. Ralph,

    I refer to some of what you write because you have things to say, and you say them lucidly and openly – attributes none too common in CE, alone or in combination. Kindness doesn't come into it. Nor does 'high regard': there is no regard in the world of CE, and one should not hold one's breath waiting for that phone to ring.

    The points that you express are worth saying – inclusion, opportunity, hard work, parental responsibility, application etc – and bigger that any of us who would say them, and the 'conductive community' has indeed failed to make a coherent collective statement that achieves the needed level of importance.

    Yes, of course your story is not unique. Every one has one, some commonplace (at least in their teller's opinion), some quite out of the ordinary by any measure. Over the years I have tried to bring some of these to wider attention. I cannot judge why these have not ignited a wider intellectual curiosity, it is as though, following an initial 'Aaah' response such burning, heuristic human experience can be safely compartmentalised and filed away as irrelevant to thr real life of all of us.

    It takes a Vygotskii, or a Luriya, or a Sacks, or a Wallon to see the sharp, bright light that such individual experience sheds upon the whole human circumstance. Many could share in this light, but most prefer their well used easy ways. Or they send a junior hack. And as for many, many of the foot-soldiers of the relevant 'professions', emotionally, intellectually, morally, perhaps they are out just of their depths.

    Yes, the various individuals and their tiny institutions that might be stated under the rubric of 'the conductive world', if they have one factor in common, it is a tendency towards a default hermeticism, esoteric and sealed close against the world outside.

    'Now what?' you ask. Keep kicking against the pricks – or walk away and leave them to their chosen destiny. Do your thing, ally with those on the same path, and never give up.


    By the way: 'The segment openly panned by the CE community never aired.' Panned by the CE Community? What is the story behind this