Autism Awareness Week (post two): Autism Awareness in Africa
Please note this is very preliminary and there will be further research to enhance the piece.
I am up at the time New Yorkers are in their school clothes going home and Californians are thinking about surf and sand. I do not know what my many Midwestern friends are doing, but I am sure it is interesting. I love y'all, or youse all, as Australian boxer, Jeff Fenech, was wont to say in his heyday. I am waiting for the imaginary taxi to take me to the imaginary Disneyland or the imaginary safari. Whatever I decide, I know I will use my imagination, intuition and courage, which are fairly universal human qualities, but deepen and richen within each indivudal like a mix of cocoa bean and the sun, which is a great way to take English tea in the tropics or the desert. Besides, Bob Geldof and his Live 8 crew have taught me the importance of tuning into the concerns of the Majority World, even if they are soon to be overshadowed by globalised offerings. Of course, the Majority World connotes great unity in diversity - from Africa's heart of darkness (with full and due apologies to Marlow and Kurtz and all who Kurtz harmed in the name of ivory and wood) to the bright lights, big city of Asia to the lush but rapidly disappearing plant and animal biodiversity of South America. I hope by the time my serioes takes me to the last location in the Majority World, the neurodiversity will not have suffered a similar fate, but knowledge and unverstanding will grow lush, strong and indestructible.
The Second World Autism Congress is in Cape Town, South Africa, from October 30 to November 2 2006. If I had cleared the commitments in my diary, I would have been there in body. Like most generation Xs and Ys, I have an ambivalent attitude towards the country that time and the cessation of apartheid have not resolved. While I was assistant moderator on the Polish and East European Culture forum (from October 4 2001 when I accepted the position with Alexandra Akulina of Yaroslavl at the same time - approximately June 2002, until September when I was retrenched/seconded due to Delphi Forums' tiering structure), I was accousted in my duties by a Russian woman who had a son. The son is now in his teenage years. It is to be resolved how he is taking in his mother's emotional instability and florid sexuality. Even at the distance of a computer screen, it was wearing, and I cannot presume to imagine how exhausting it would have been to live with. This was the first time I did not keep my personal and professional life separated as I had been taught to do and as I would in normal circumstances most scrupulously. At that time in my life I was wanting to be in people's good books so much that my natural desire for approval and validation left me extremely vulnerable to narcissistic, histronic, borderline and perhaps antisocial defences wrapped up in the most seductive packages. Until July 2003, when she finally snapped in the classic way of those who use the Net principally for their own mischief and consequently get trapped in their own web of deceit and deception, how was I to know that I was in the right and she was projecting? At this stage I was still childlike and helpless - especially trying to maintain the restless clientele of older and often conservative or reactionary men. I am sure I appeased them - against my own beliefs and deeply held convictions . My attempts to compromise had a great element of self-sacrifice, and I must have appeared wishy-washy at best and integrity-impaired at the worst times. Fortunately, regime change got me out, but it took over four months of acrimonious separation and estrangement to achieve even a modicum of peace with myself and my actions. I am far more experienced now; I recognise the obvious guilt. I should have been far more bitter to the sweet, as Charlene's I've never been to me says, to paraphrase a very little. To ordinary hardworking South Africans her life style must have seemed like the Charlene song. I really wish I had not opened up that thread about international travel - that sort of thing is bound to have competition and fantasy at the best of times - or indeed responded to any of her posts. It was the lack of response which did me in. I am not accustomed to ignoring people - that has never been part of my coping repertoire. Ever. Absolutely zero tolerance in regard to that sort of behaviour. It would have been painful, me who is accustomed to give 110% like Horton the Elephant. But to get to a point where I can write this down, feel my feelings and not walk away from the hurt, and mourn the loss and grief appropriately - is wonderful and beautiful in itself. And recognising my own wrongs in that situation, and acknowledging harm ... this episode reminds me so much of Marianne Williamson and her famous quote about power and beauty which so many attributed to Nelson Mandela. One last thing before I leave: probably most people with autism spectrum conditions should disclose, even if it means risking avoidance or rejection in loev. It was the frustration in not getting and giving positive strokes attuned to your unique nature, and being unable to process normal social signals of interest, attraction and scorn. One's neurological status may not matter in employment - one is protected in employment - but love is a whole different ball game, especially if one has not the skills. An autistic person's purity may well make her the perfect target for all sorts of social and emotional games. It helps alleviate tension if her condition is recognised among the honest mass and those in authority who have the right to adjudicate for her in the basis of decision-making debility or incapcitation (certainly this already variable ability decreases markedly/dramatically under stress, as in my case) - to advocate for her when she cannot (yet) feasibly do so. A special education student who worked as technology volunteer in a 5-19 school for those with moderate and severe learning difficulties did this on my behalf and cheered me up when another French member asked about plans for 2003, and over the next six months her posts were a pleasure to read and a spur to my ambition, which had laid dormant for various reasons, personal and professional. She may be young, attractive and educated - and thus appear Bliss Ninny in combat - the archetypal Internet Warrior - she is intrinstically defenceless, and only after very hard experience does she become less trusting of the world outside her door, and to protect herself and put appropriate coping strategies against the determined manipulator and stay safe and honest.
It is probably fair to make the disclosure to the trusted people but not to the mass, particularly if one is superficially socially skilled and appears to be emotionally intelligent and one's slip-ups can be in the normal range or attributed to non-autism factors (for example, familial stress or a co-morbid condition - specifically an affective disorder such as anxiety and unipolar/bipolar depresssion. In my case, rather more pragmatically, I was going through dental treatment that week). The greatest problem for the able autistic person (and I am speaking both of individual and systemic problems) is that she is treated as normal too often without being able to handle it. She should instead be able and encouraged to be secure in her core identity and get on with the job of being the best autistic person she can possibly be. Yes, some of it comes off as self-esteem rhetoric; but my intent is to hold those who would plead for an intrusive programme of treatment or even an identity-threatening cure accountable to their constituency. And develop nurturing presences - tough and firm but fair and endlessly forgiving - who can negotiate the more subtle Khyber Passes with the person. Every decent Internet forum should have a Named Person, especially for children and vulnerable adults. Ideally, the parent or guardian should take a friendly interest and an active supervisory role in the experience, as they would do outside the computer. Such concerned people with best interests at heart are to be valued and treasured as pearls (or diamonds - de Beers style) beyond price. The social interaction and communiaction is as real and valid in the virtual world as in the real, and the Named Person or Persons (in an ideal world 1:2:1 or 1:8:1 per open-Web-2.0 application designed primarily for social purposes) will have a nuanced awareness of this and its effects on those she is appointed or elected to look after, and be able to change her approach subtly to different ages, stages, needs and abilities.
Many Majority World countries have a natural and healthy distrust of the Internet. In the wrong hands it may indeed be a tool of post-colonalist ideology with all the baggage this carries. In the right hands, it may be a wonderful resource for persons with autism spectrum disorders, and their families. Autism South Africa has a vibrant presence on the Net, even though many of the links are broken and whiz bang features are important. This is frustrating and many parents would be advised to seek more information elsewhere in the world. Happily if they speak English or Afrikaans, they are not so much at a disadvantage. We should definitely encourage open-source, right-out-of-the-box approaches to awareness - a wiki or a blog in, say, Zulu, can encourage sharing very much in the traditional vein, preserving knowledge and stories well into the third millenium and creating productive relations and networking among generations, very much as Lindsay Weekes, an autism support worker, has done in Victoria, Australia, through his Autism Picture Page and seminars in various fora.
I imagine many foundations and aid agencies are doing this - it oculd be a fruitful subject for womens' microcredit schemes, and I would support any project like this with knowledge, time and server and wiki farms. And blogs! Blogs are like today's campfires, and I know I have so much more reach - LiveJournal has 10 million blogs created in seven years - and Blogger at least that many readers. And for every poster on the very popular THBB, which has recently (10.5.2006) moved to a database-driven architecture, with all the attendant teething problems among the long-term members (some of whom have been on this board since March 2000) - there are at least 100 lurkers. Many of these people are Africans of all stripes, just waiting to get their untainted voice and choice out. It will be interesting when the Majority World's Generation Y and Millenials (hopefully we'll have met the Millenium Developmental Goals, if not by the UN stated time, then by the time they mature into adulthood) come into their own. I've seen the bubble in Asia and a little bit in South America. I have greatly valued South African friends, and in general greet them as fellow cricket and rugby (both league and union - go the Springboeks and Protaeas!) fans as well as the invisible threads which connect us as fellow members of the Commonwealth.
And who could forget Eric the Eel in the 2000 Sydney Olmypic Games? If that isn't pure unadulterated sporting talent [!], I don't know what is. And aren't those Kenyan runners fantastic? And musicians? I wonder how sponsored sporting events can leverage African awareness of disability in general? Among the working and middle classes there would be millions of people willing to give it a shot. We will see one day soon how young Africans react to the concept of autistic pride. It would be good to pass on the flame to a black African like the ones in Henning Mankel's sensitively told stories about life in Mozambique, aimed at young adult readers. Here is a man with a healthy appreciation of the global village and what it means to us all, and the ability and will to put it in his writing and activism with his theatre. In 2004, Mankell told a story, at the end of his presentation, about an African teenager who had nver heard of kissing. It is when we hear tales like these that the world does get smaller and the world's people do get closer and realise that 'we're more alike than different'. Can you lot tell I'm stoked that Torey Hayden's works are at last selling bonkers in the Commonwealth (indeed, it was not until this week that she got knocked over by Sharon Osbourne. One devoted fan vowed to burn that book, until another one told her that she might want to buy it again!) That means many people will get to encounter the oeuvre from One Child to Twilight Children. Now if Hayden's home publishers would kindly allow her to write 1) the fiction so dear to her heart, especially exploring alternative realities which would fit in well with the accepted range of literary fiction and especially the tradition of magical realism which non-English speaking readers have experienced through their reading of The Mechanical Cat and 2) more stories about her life and work in Wales, especially her avocation as a sheep farmer. I think the stories need a new setting - generic American special education is no longer what it was when she was actively teaching. It's inclusion, inclusion, inclusion these days, and while that isn't such a bad thing, it does make reading the books very different. And I'm not sorry that the chat room will be gone. If I learnt one thing from the Chat Room - it's that K-Mart sucks so much that no decent Briton would go to one, even were it in the country. Of course there was the more usual gossip about cats, books, pop rocks and poop - to take the combined subject of a current, popular and well-known thread. A great parody of Hayden which I would have no hestitation to share with everyone, even those who have never read her books. The Haydenverse is pretty much its own world which ocassionally intercedes with the real one of anonmyous minor children who meticulously consented to have their remarkable stories told for the public interest and edification; when we go too far in our comments or speculations, we are told pretty instantly to respect the real people who are represented in the books and smartly too.
That's all for now.
Not much about Africa per se, but it does explore some pretty complex thoughts about the digital divide and how I used it to straddle Autism Awareness challenges in a myriad of contexts. It may well be relevant to other people, particularly young teenagers and parents who are just starting to explore the Internet as a source of reading, writing and communicating opportunities. Remember everyone this is first draft writing and I make indented edits in a second draft so it sounds so much fuller and richer. Otherwise what you're getting here straddles the balance between essential and literal truth fairly well. So well that I got sick just reliving it.
quvack now knows what I've been up to (though I hardly think he anticipated receiving quite such an honest and expansive answer on my part - I tend to grunt out 'Good' when I am asked this in the 3d world!), and indigowombat and those others who were concerned about my physical, mental, emotional and spiritual health will know now that for the last two hours I have been much calmer than I was this morning or even earlier this afternoon, when Mum and I were knocked in a crash of three cars. Your classic example of triangulation. I would like to apologise to zathras26 for getting his name wrong in my last. Most days since I was very ill in 1999 I have been heaps agitated in the morning and I would get more to my level of euthymy in the late afternoon and then become drowsy after about 4:30-5:00 and then active around dinnertime which we take in time for the news.
I am up at the time New Yorkers are in their school clothes going home and Californians are thinking about surf and sand. I do not know what my many Midwestern friends are doing, but I am sure it is interesting. I love y'all, or youse all, as Australian boxer, Jeff Fenech, was wont to say in his heyday. I am waiting for the imaginary taxi to take me to the imaginary Disneyland or the imaginary safari. Whatever I decide, I know I will use my imagination, intuition and courage, which are fairly universal human qualities, but deepen and richen within each indivudal like a mix of cocoa bean and the sun, which is a great way to take English tea in the tropics or the desert. Besides, Bob Geldof and his Live 8 crew have taught me the importance of tuning into the concerns of the Majority World, even if they are soon to be overshadowed by globalised offerings. Of course, the Majority World connotes great unity in diversity - from Africa's heart of darkness (with full and due apologies to Marlow and Kurtz and all who Kurtz harmed in the name of ivory and wood) to the bright lights, big city of Asia to the lush but rapidly disappearing plant and animal biodiversity of South America. I hope by the time my serioes takes me to the last location in the Majority World, the neurodiversity will not have suffered a similar fate, but knowledge and unverstanding will grow lush, strong and indestructible.
The Second World Autism Congress is in Cape Town, South Africa, from October 30 to November 2 2006. If I had cleared the commitments in my diary, I would have been there in body. Like most generation Xs and Ys, I have an ambivalent attitude towards the country that time and the cessation of apartheid have not resolved. While I was assistant moderator on the Polish and East European Culture forum (from October 4 2001 when I accepted the position with Alexandra Akulina of Yaroslavl at the same time - approximately June 2002, until September when I was retrenched/seconded due to Delphi Forums' tiering structure), I was accousted in my duties by a Russian woman who had a son. The son is now in his teenage years. It is to be resolved how he is taking in his mother's emotional instability and florid sexuality. Even at the distance of a computer screen, it was wearing, and I cannot presume to imagine how exhausting it would have been to live with. This was the first time I did not keep my personal and professional life separated as I had been taught to do and as I would in normal circumstances most scrupulously. At that time in my life I was wanting to be in people's good books so much that my natural desire for approval and validation left me extremely vulnerable to narcissistic, histronic, borderline and perhaps antisocial defences wrapped up in the most seductive packages. Until July 2003, when she finally snapped in the classic way of those who use the Net principally for their own mischief and consequently get trapped in their own web of deceit and deception, how was I to know that I was in the right and she was projecting? At this stage I was still childlike and helpless - especially trying to maintain the restless clientele of older and often conservative or reactionary men. I am sure I appeased them - against my own beliefs and deeply held convictions . My attempts to compromise had a great element of self-sacrifice, and I must have appeared wishy-washy at best and integrity-impaired at the worst times. Fortunately, regime change got me out, but it took over four months of acrimonious separation and estrangement to achieve even a modicum of peace with myself and my actions. I am far more experienced now; I recognise the obvious guilt. I should have been far more bitter to the sweet, as Charlene's I've never been to me says, to paraphrase a very little. To ordinary hardworking South Africans her life style must have seemed like the Charlene song. I really wish I had not opened up that thread about international travel - that sort of thing is bound to have competition and fantasy at the best of times - or indeed responded to any of her posts. It was the lack of response which did me in. I am not accustomed to ignoring people - that has never been part of my coping repertoire. Ever. Absolutely zero tolerance in regard to that sort of behaviour. It would have been painful, me who is accustomed to give 110% like Horton the Elephant. But to get to a point where I can write this down, feel my feelings and not walk away from the hurt, and mourn the loss and grief appropriately - is wonderful and beautiful in itself. And recognising my own wrongs in that situation, and acknowledging harm ... this episode reminds me so much of Marianne Williamson and her famous quote about power and beauty which so many attributed to Nelson Mandela. One last thing before I leave: probably most people with autism spectrum conditions should disclose, even if it means risking avoidance or rejection in loev. It was the frustration in not getting and giving positive strokes attuned to your unique nature, and being unable to process normal social signals of interest, attraction and scorn. One's neurological status may not matter in employment - one is protected in employment - but love is a whole different ball game, especially if one has not the skills. An autistic person's purity may well make her the perfect target for all sorts of social and emotional games. It helps alleviate tension if her condition is recognised among the honest mass and those in authority who have the right to adjudicate for her in the basis of decision-making debility or incapcitation (certainly this already variable ability decreases markedly/dramatically under stress, as in my case) - to advocate for her when she cannot (yet) feasibly do so. A special education student who worked as technology volunteer in a 5-19 school for those with moderate and severe learning difficulties did this on my behalf and cheered me up when another French member asked about plans for 2003, and over the next six months her posts were a pleasure to read and a spur to my ambition, which had laid dormant for various reasons, personal and professional. She may be young, attractive and educated - and thus appear Bliss Ninny in combat - the archetypal Internet Warrior - she is intrinstically defenceless, and only after very hard experience does she become less trusting of the world outside her door, and to protect herself and put appropriate coping strategies against the determined manipulator and stay safe and honest.
It is probably fair to make the disclosure to the trusted people but not to the mass, particularly if one is superficially socially skilled and appears to be emotionally intelligent and one's slip-ups can be in the normal range or attributed to non-autism factors (for example, familial stress or a co-morbid condition - specifically an affective disorder such as anxiety and unipolar/bipolar depresssion. In my case, rather more pragmatically, I was going through dental treatment that week). The greatest problem for the able autistic person (and I am speaking both of individual and systemic problems) is that she is treated as normal too often without being able to handle it. She should instead be able and encouraged to be secure in her core identity and get on with the job of being the best autistic person she can possibly be. Yes, some of it comes off as self-esteem rhetoric; but my intent is to hold those who would plead for an intrusive programme of treatment or even an identity-threatening cure accountable to their constituency. And develop nurturing presences - tough and firm but fair and endlessly forgiving - who can negotiate the more subtle Khyber Passes with the person. Every decent Internet forum should have a Named Person, especially for children and vulnerable adults. Ideally, the parent or guardian should take a friendly interest and an active supervisory role in the experience, as they would do outside the computer. Such concerned people with best interests at heart are to be valued and treasured as pearls (or diamonds - de Beers style) beyond price. The social interaction and communiaction is as real and valid in the virtual world as in the real, and the Named Person or Persons (in an ideal world 1:2:1 or 1:8:1 per open-Web-2.0 application designed primarily for social purposes) will have a nuanced awareness of this and its effects on those she is appointed or elected to look after, and be able to change her approach subtly to different ages, stages, needs and abilities.
Many Majority World countries have a natural and healthy distrust of the Internet. In the wrong hands it may indeed be a tool of post-colonalist ideology with all the baggage this carries. In the right hands, it may be a wonderful resource for persons with autism spectrum disorders, and their families. Autism South Africa has a vibrant presence on the Net, even though many of the links are broken and whiz bang features are important. This is frustrating and many parents would be advised to seek more information elsewhere in the world. Happily if they speak English or Afrikaans, they are not so much at a disadvantage. We should definitely encourage open-source, right-out-of-the-box approaches to awareness - a wiki or a blog in, say, Zulu, can encourage sharing very much in the traditional vein, preserving knowledge and stories well into the third millenium and creating productive relations and networking among generations, very much as Lindsay Weekes, an autism support worker, has done in Victoria, Australia, through his Autism Picture Page and seminars in various fora.
I imagine many foundations and aid agencies are doing this - it oculd be a fruitful subject for womens' microcredit schemes, and I would support any project like this with knowledge, time and server and wiki farms. And blogs! Blogs are like today's campfires, and I know I have so much more reach - LiveJournal has 10 million blogs created in seven years - and Blogger at least that many readers. And for every poster on the very popular THBB, which has recently (10.5.2006) moved to a database-driven architecture, with all the attendant teething problems among the long-term members (some of whom have been on this board since March 2000) - there are at least 100 lurkers. Many of these people are Africans of all stripes, just waiting to get their untainted voice and choice out. It will be interesting when the Majority World's Generation Y and Millenials (hopefully we'll have met the Millenium Developmental Goals, if not by the UN stated time, then by the time they mature into adulthood) come into their own. I've seen the bubble in Asia and a little bit in South America. I have greatly valued South African friends, and in general greet them as fellow cricket and rugby (both league and union - go the Springboeks and Protaeas!) fans as well as the invisible threads which connect us as fellow members of the Commonwealth.
And who could forget Eric the Eel in the 2000 Sydney Olmypic Games? If that isn't pure unadulterated sporting talent [!], I don't know what is. And aren't those Kenyan runners fantastic? And musicians? I wonder how sponsored sporting events can leverage African awareness of disability in general? Among the working and middle classes there would be millions of people willing to give it a shot. We will see one day soon how young Africans react to the concept of autistic pride. It would be good to pass on the flame to a black African like the ones in Henning Mankel's sensitively told stories about life in Mozambique, aimed at young adult readers. Here is a man with a healthy appreciation of the global village and what it means to us all, and the ability and will to put it in his writing and activism with his theatre. In 2004, Mankell told a story, at the end of his presentation, about an African teenager who had nver heard of kissing. It is when we hear tales like these that the world does get smaller and the world's people do get closer and realise that 'we're more alike than different'. Can you lot tell I'm stoked that Torey Hayden's works are at last selling bonkers in the Commonwealth (indeed, it was not until this week that she got knocked over by Sharon Osbourne. One devoted fan vowed to burn that book, until another one told her that she might want to buy it again!) That means many people will get to encounter the oeuvre from One Child to Twilight Children. Now if Hayden's home publishers would kindly allow her to write 1) the fiction so dear to her heart, especially exploring alternative realities which would fit in well with the accepted range of literary fiction and especially the tradition of magical realism which non-English speaking readers have experienced through their reading of The Mechanical Cat and 2) more stories about her life and work in Wales, especially her avocation as a sheep farmer. I think the stories need a new setting - generic American special education is no longer what it was when she was actively teaching. It's inclusion, inclusion, inclusion these days, and while that isn't such a bad thing, it does make reading the books very different. And I'm not sorry that the chat room will be gone. If I learnt one thing from the Chat Room - it's that K-Mart sucks so much that no decent Briton would go to one, even were it in the country. Of course there was the more usual gossip about cats, books, pop rocks and poop - to take the combined subject of a current, popular and well-known thread. A great parody of Hayden which I would have no hestitation to share with everyone, even those who have never read her books. The Haydenverse is pretty much its own world which ocassionally intercedes with the real one of anonmyous minor children who meticulously consented to have their remarkable stories told for the public interest and edification; when we go too far in our comments or speculations, we are told pretty instantly to respect the real people who are represented in the books and smartly too.
That's all for now.
Not much about Africa per se, but it does explore some pretty complex thoughts about the digital divide and how I used it to straddle Autism Awareness challenges in a myriad of contexts. It may well be relevant to other people, particularly young teenagers and parents who are just starting to explore the Internet as a source of reading, writing and communicating opportunities. Remember everyone this is first draft writing and I make indented edits in a second draft so it sounds so much fuller and richer. Otherwise what you're getting here straddles the balance between essential and literal truth fairly well. So well that I got sick just reliving it.
quvack now knows what I've been up to (though I hardly think he anticipated receiving quite such an honest and expansive answer on my part - I tend to grunt out 'Good' when I am asked this in the 3d world!), and indigowombat and those others who were concerned about my physical, mental, emotional and spiritual health will know now that for the last two hours I have been much calmer than I was this morning or even earlier this afternoon, when Mum and I were knocked in a crash of three cars. Your classic example of triangulation. I would like to apologise to zathras26 for getting his name wrong in my last. Most days since I was very ill in 1999 I have been heaps agitated in the morning and I would get more to my level of euthymy in the late afternoon and then become drowsy after about 4:30-5:00 and then active around dinnertime which we take in time for the news.