Archive | June, 2007

On being different

10 Jun

I think a lot of people operate under the misconception that there is this group called ‘NT’ and this group called ‘ND’ and that all in the ‘ND’ group are the same as each other. Not so. The way I was taught to think about neurodiversity is that it is comprised of a group of people with differing neurologies. So to me, anyone who’s difference is primarily stemming from a neurological difference belongs in that wider grouping. Autism. Schizophrenia. Learning Disabilities (retardation in US-speak). Tourettes. OCD. Bipolar. Blindness (where the blindness originates from the optic nerve). Down Syndrome. Epilepsy. Dyscalculia. A hundred more I can’t think of right now.

Autism is not the most or the least of these subgroups encompassed by neurodiversity. It’s simply one amongst many.

This is what I was taught about neurodiversity and this is what I hope it is about. If it isn’t then I have misled an awful lot of people over the last 3 years, including myself.

I carry one of the diagnosis’ listed above. I have type 1 rapid cycling bipolar disorder (Wikipedia). The first time I can remember feeling that I was decidedly different in outlook, thought patterns, behaviour and generally _being_ was when I was about 9 – 10 years old. However, I have not carried an official diagnosis anywhere _near_ as long as that. I’m nearly 40 now. 25 – 30 years ago, just as with autism, there weren’t the same amount of diagnostic specialists who knew the signs and symptoms. Meh. Such is life. It’s well managed now which is a massive relief.

I don’t want to wallow in myself too much but I want to provide some context for how I feel about neurodiversity and how I felt last week when everything kicked off.

Occasionally – and not very often – I may need to take a neuroleptic. These are serious drugs, administered (hopefully) with great care. There are very good reasons why they should be prescribed as an absolute last resort to autistic people.

That said, for people with _my_ neurology they are sometimes necessary.

I had an email exchange last week with someone who put forward the idea that the continued use of neuroleptics to autistic people was an issue of great importance that needed to be discussed. This is something I entirely agree with. My own medication is carefully reviewed every 2 months. I hate taking pills and the less I have to take, the better.

In the course of this exchange, the phrase ‘brain damaged’ was used in a way that seemed to indicate to me that those who may have to use neuroleptics have damaged brains. I was somewhat taken aback by this. My immediate association was the idiotic null comparisons of John Best of autistic people having ‘rotting brains’. It seemed to me that using overly inflammatory and denigrating language such as this was not a good way to promote the idea of neurodiversity. I fully accept that neuroleptics are far from ideal and that there is good emerging science to indicate chronic overprescription of neuroleptics to autistic people but the use of the phrase ‘brain damaged’ was a step too far. Was this really how this person saw me?

I don’t think that this person meant to be offensive in any way. But let me tell you a story.

My grandad (now dead) served in WWII and had a British Asian man in his regiment. My grandad used to refer to him as ‘Chinky Charlie’ until one day I asked him why he was called that – it was then I learnt that ‘Chinky Charlie’ was of Chinese descent. His other nickname was ‘Yellow Charlie’ apparently. I was really shocked and told my grandad that I considered that racism. I asked him what ‘Chinky Charlie’s’ real name was – he couldn’t remember. But he said ‘he didn’t mind – he laughed it off’. I’ll bet he did. What option did he have?

My grandad didn’t _mean_ to be racist. He wasn’t intentionally trying to denigrate his fellow soldier in terms of his race. He also told me what a deep respect this man carried amongst the regiment. However, the intention – or lack of it – is irrelevant. He _was_ being racist. He was characterising someone on their race. He couldn’t even remember this guys actual name!

I hope my point is clear. Words matter. Their intent may not be to offend (its easy to tell when someone is purposefully being offensive) but if neurodiversity truly is an umbrella community for a wide variety of differing neurologies as I thought it was then care is needed. We don’t have to tip-toe around each other (that would just become a PC nightmare) but the willingness to not generalise and not use comparisons that a truly ignorant man like John Best would use are not only necessary but vital.

Rendering unto

9 Jun

I’ve taken a deliberate and purposeful step away from everything autism related (online anyway) this last week and to be perfectly frank, its been a breath of fresh air. I’ve done some hard thinking and some hard talking/listening to family and friends and tried very hard to firstly compartmentalise what exactly I found so upsetting and offensive about the events of last weekend.

First, I was dismayed to find someone I considered an ally calling me names. It doesn’t matter under what guise it was – literary allusion or not – if you call people names they’re never going to find it easy to talk _with_ you.

I still haven’t been able to resolve the sheer mindless immaturity of this act and so I simply won’t try and rationalise it any more. It happened, it can’t be undone.

Secondly, I was even more dismayed – and deeply hurt – to hear someone I considered an ally accusing me personally and people I like of doing ‘things’. These things were never quantified and were never illustrated. I (we) were just supposed to accept they had happened.

I don’t operate like that. I do plenty of accusing on this blog. But I _back it up_ – and if I can’t back it up then I retract it. That’s how the world works. Nobody – under any circumstances – should be free to accuse anyone else of anything unless they can provide some evidence. Without that, we descend into anarchy.

Even more hurtful was to hear friends of the accuser wandering from blog to blog essentially saying ‘So? So you were accused of something – what’s the big deal?’ The big deal is integrity, respect, truthfulness. These things matter. Or at least, they matter to me.

A sideshoot of that issue was the same people saying ‘yeah, but underneath all the bluster, he has a point’. I cannot possibly convey to you how unbelievably frustrating it is to try and explain time after time that the underlying point – nothing about us without us – was never in question. Nobody thought otherwise. I was asking for the _specific examples_ of the allegations made against me and the Hub membership at large. Hijacking, usurping agendas, taking over.

This _is_ a big deal. To me, as someone who has spent the last 3 years invested in listening to autistic people regarding the autistic experience and trying to _support_ the agenda in one of the only ways I know how – technically – to hear that dismissed – _without any foundation whatsoever_ was like a kick in the teeth. That it should come from people that I deeply respected and who’s opinions I valued was the worst thing of all.

Thirdly, the vaccine connection. If anybody truly thinks that the vaccine/autism bullshit is anything other than the most important issue facing autism and autistic people right now then they need to pull their heads out the sand.

Right now, this week, a trial will begin that will effectively determine whether vaccines can legally cause autism. The outcome can potentially change the way the whole world views autism. The quacks lose and we can scale back a bit and move focus elsewhere. The quacks win….well, what happens then? Who knows, because as far as autism goes, all bets will be off.

Are you autistic? You’ll be considered first and foremost vaccine-injured. If you refuse treatment – what then? Will your ‘diversity’ be respected? Or will you be the new schizophrenics? Condemned to be held down and chelated much as schizophrenics were once held down and given ECT. Will you still be eligible for the help you get? Housing? Social? Monetary benefits…do you think you’ll still get them?

How about those autistic people who work? Think you’ll still have your employment rights? Would you be a ‘better’ employee for the company as autistic or chelated?

Are you the parent of an autistic child? Children who’s parents refuse treatment can be legally forced to surrender their paternal rights so doctors can apply that treatment. At the moment chelation for autism is seen as quackery. If this legal case goes through – who knows?

This happening right now.

Which brings me on to the concept of leadership. If autistic people alone want to not only lead and set the agenda but also decide what is acceptable for others to blog/talk about then they need to be exceptional leaders.

Leaders inspire, support their ‘troops’ and lead by example. They take responsibility. I haven’t seen much of that from certain autistic people of late. Indeed, when a leader is short sighted enough to think that its OK to ignore the vaccine issue then we are all – leaders and followers – in trouble.

If ever the autistic community needed leadership and vision in the face of a real, tangible threat then it is right now. This week.

I wish I could share with this (so far imaginary) leadership the emails I have received from parents this last week. If I could then I would tell my leaders that a good sized portion of their troops were now disillusioned and feel like they have been sold a bill of goods regarding neurodiversity. I feel a bit like that myself. Here is a quote from a parent (I was given permission to use this) who also happens to be ‘ND’:

All our voices are important. Even that of those who are less tolerant, as long as they can back up their thoughts and feelings with solid foundations, not walls that only bounce back reverberations of the original thought. I am afraid that some of our fellow ND associates have completely forgotten what the D stands for, and that truly bothers me.

It bothers me too. As someone else who is not NT but not autistic (e.g. – neurodiverse) I also think there are some people in the autism community who have forgotten that autism is a subset of neurodiversity, not its definition. They also seem to think that – as my email correspondent points out – ‘diversity’ = ‘autism only’. The people who originally taught me about awareness, disability rights etc continue to teach me but this time the lessons are not so pleasant and smack more of exclusion and not belonging to a ‘boys club’ than they do of diversity.

I got into this originally due to my daughter and that remains the overriding reason I participate. The idea of neurodiversity – that people with _a variety_ of differences – appealed to me instantly and still does. I don’t want to lead that community but I do want to participate – have my say – on how its agenda is set. I urge every parent of every autistic child, physically ND or not, to have their say too. I would temper that with reminding you that neurodiversity does not equate to autism and that as far as autism goes, you should have your say but never exclude autistic people – and be prepared for the weight of opinion to go against yours.

The saddest thing about all this is that I never thought that reminder was necessary based on our collective behaviour. The trap I fell into – until shown the nature of the trap by my big sister – is that not all autistic people do not want to hear your voices. The majority appreciate that you have something to add but they also know that they are (to borrow Kassiane’s phrase) QbE – Qualified by Experience – and that experience carries a large amount of weight.

In my next post I want to talk more about neurodiversity and how it encompasses – as oppose to ‘is defined by’ – autism. I’ll try and talk some more about my own ND neurology and why I am uneasy about how that neurology is viewed by some in the autistic community.

Downtime

4 Jun

To say I’m disappointed and angry is an understatement. I’m going offline from all things autism for a few days. I still have no idea about what neurodiversity is to me anymore or my role in it.

To the untold amount of people who’ve dropped me mail regarding this issue, I sincerely thank you. Its good to know I have your support, especially the autistic mailers amongst you. It does mean a lot.

There’s a lot going on ‘behind the scenes’ right now as well that is saddening to me and some of that is neurobigotry and ableism towards people such as myself. This has hurt me a great deal and I need to get away from that too.

So, my email acct is suspended temporarily and I’m going to just vanish for awhile (few days, week, not sure). When I come back I’ll hopefully have a better idea about how (if at all) I want to participate in neurodiversity and a better idea of what I want to do (if anything) with the Hub.

Nothing is decided here

3 Jun

I’ve done a lot of thinking over the last couple of days. I’m trying to get my head around the events and make some kind of sense out of them before I make any decisions on my own future association with neurodiversity and in particular the Hub.

I’ve read and re-read a lot of the threads and comments that preceded and also followed mine and I have come to a few conclusions that have not made me happy in any way but I intend to speak my mind.

The first conclusion that I have come to is that Larry is a pseudo intellectual poseur. I’ve looked carefully at what he has written both now and in the past and applied his own criteria to his words and actions. I find him duplicitous – dishonest and narcissistic.

This does matter. Larry makes some strong allegations. It is these allegations and his subsequent behaviour that led me to my conclusions about him.

A prime example of Larry’s purposeful misinterpretation lies in this comment in which Larry berates me thusly:

…the battle is not being fought or won on the scientific front it is a political battle, and economic one, about education, welfare, employment rights, housing, you name it. Scientists are a small cog in a much larger machine and the media is where the battlefield lies. NT’s are not the heroes in this battle either.

I was very puzzled by these words as the post Larry was referencing made no claim that the science of autism was ‘the battle’. I also found his comment that ‘NT’s are not the heroes in this battle either’ bizarre as I don’t think I’d even brought neurology into the post. Larry had built himself a couple of strawmen which he could make himself look clever with by taking down. This was just needless narcissism.

Next, Larry made a post on his own blog in which he states:

…I am becoming critical of a lot of posting in the autism hub itself, because I believe in the reasoning behind the slogan “nothing about us without us”

I have to say it, but the problem is that important though it is to disabuse the public of the notions that mercury poisoning = autism (which nobody much believes in the UK as we are still too busy blaming MMR) , important though that is, that is not where the main fight is, and that is to realise that autism is for life, and because most of us spend more of our lives as adults than children, that there we must have proper recognition and a place in society.

Furthermore, that although there are ‘good parents’ who agree with that and want it as an aim for there as yet young children, the message has to come primarily from us not them. If the parents continue to evoke that old line “but you can speak for yourself my child cannot” they run the risk of effectively taking our voice away, because we are the ones with the condition?

I tried to engage Larry on his blog about why I believed he was right and wrong (something I still believe). He is right that there should be ‘nothing about them without them’. He then infers that there is a problem associated with this statement originating from some parent blogs in the Hub. He then goes on to expand on his comment on my blog about how vaccines/mercury/science is not the main fight. He closes by saying that ‘the message’ should come from ‘us’ not ‘them’ (parents).

All of this was couched in Larry’s usual pontificating prose style. At no point did Larry ever mention any specific examples of these parent blogs he was so concerned about. He makes no explanation or examples of blogs in the Hub that abuse the notion of ‘nothing about us without us’.

I was concerned about this enough to want to write my own blog entry about it and try and get as many views as possible, particularly from autistic people.

During the course of the comments I read some of the statements Larry had made on Steve’s blog – a harmless enough post Steve had made promoting a few of the things going on. This was Larry’s first comment:

I happen to believe in the promotion of the case of autism from an autistic viewpoint contra mundum and in spite of everybody. This is Cosa Nostra, our thing, autism advocacy will only ever be advanced by ourselves speaking for ourselves and so I don’t go a bundle on NT’s even if they are on our side, being promoted to hero status.

Again, Larry seems to be building strawmen for himself to knock down. No where in Steve’s post did he advance an opinion that promoting the case of autism should _not_ be made primarily by autistic people. Nowhere did Steve refer to anyone as a hero.

I left that whole post taken aback by the use of the phrase ‘cosa nostra, our thing’. It seemed to me that Larry was claiming that Neurodiversity was solely the province of autistic people. This opinion was reinforced when Larry followed up his first comment on Steve’s blog with this:

Your blog which I have commented on talks about parents, it seems to me that neurodiversity has been hijacked.

Now I was genuinely alarmed. Firstly by the thought that autistic people might think that parents on the Hub was hijacking the issue of neurodiversity but even more so by Larry’s obvious and growing inference that neurodiversity was strictly something to do with autistic people and no one else.

That bothered me a lot. It is most certainly not what I thought neurodiversity was and most certainly not how I had had neurodiversity explained to me.

It was at this point that I first began to suspect that there was considerably less to Larry than I had ever thought. However, I asked in my next comment if autistic people would tell me their thoughts. They were pretty much in line with my thinking. Four commenters who are autistic essentially said that autistic people should lead but they were very happy with how the Hub worked.

So now I was perplexed. What was _really_ going on here?

Larry’s next few comments were about his personal history with the disability movement and how it evolved. They seemed to be an exercise in meaningless verbiage.

I still had no idea why Larry felt that neurodiversity was solely something that belonged to autistic people or what specific thing(s) had happened to make him think parents were taking over the agenda. The opinions of the other autistic people who had posted seemed to reflect my bewilderment. In short, everybody agreed – as they always had – that the agenda of autism advocacy should be set by autistic people.

Larry’s next comment simply added to the strawmen.

What is worrying is when the outside world, the press will seek out non autistic representatives of this blog world to represent what neurodiversity is about.

The autism hub is not the be all and the end all of neurodiversity anymore than the aut-advo list is the sum total of autistic self advocacy.

Again, it is clear from the first quote that Larry firmly believes that neurodiversity is the sole province of autistic people. His second quote is a total strawman – who ever claimed that the Hub was the be all and end all of neurodiversity?

By this point I was getting frustrated and increasingly annoyed at Larry’s evasion. His further comments only served to increase that annoyance:

As far as neurodiversity not being an autistic only thing, that is a comment I have been making for sometime with my dyslexic hat on.

This is at direct odds with Larry’s previous statements such as : _”What is worrying is when the outside world, the press will seek out *non autistic representatives of this blog world to represent what neurodiversity is about*.”_

It was becoming increasingly clear to me that Larry was being evasive and dishonest when representing his own opinions. I had made the point numerous times by this time that Larry was failing to take into account the fact that neurodiversity was _not_ solely about autism, that there were lots of other ways of not being NT and also that there were plenty of bloggers on the Hub that were both autistic _and_ parents.

All in all, I asked Larry about eight times to provide examples of what he was talking about e.g. where bloggers on the Hub that he knew were definitely NT were trying to wrest the agenda away from autistic people. He never did.

There was plenty more bloviating passages of prose about the history of the disability movement but that was about it. There was – after I pinned him down – an admission that:

neurodiversity does not belong exclusively to autistics it is an evolving culture

Which was a great relief to hear.

However, I’d reached a pretty firm conclusion by this time on what Larry’s motivations were based on his words and deeds. He is an attention seeker who is annoyed that he isn’t the story. Throughout this entire episode he has made accusations that he is unable to backup, he has switched positions when exposed in his illogic and has demonstrated a nasty tendency to turn neurodiversity into The Larry Arnold Show.

The final straw for me was when he told me that the work that some of us had done with mercury/vaccines was actually misrepresenting autistic people and/or neurodiversity.

Since than I have been inundated with email, primarily from autistic people, telling me that my suspicions are correct. Larry like to ensure that Larry is the show. These are people who have known Larry online I’ve also heard from one person that Larry comes from a philosophical perspective that likes to blow things up and then see whats still standing to work with. That isn’t a philosophical perspective, thats just stupid.

Lets boil down Larry’s actions and words into a nutshell. He invented a problem and then couldn’t back up his claims. The guiding principles of the Hub are laid out on its homepage. If Larry or anyone else can show me where there is a growing cadre of parents abusing those ideals then we can act. Until then, the only issue is how Larry deals with his tendency to overblow nothings into somethings in order to bask in the attention.

Think I’m being too harsh? Well, I’m just emulating Larry and trying his trick of pretending everything is a pseudo-intellectual exercise in destructive philosophy.

Larry once said:

As for what people consider people to be, the evidence is in the actions not the protestations of innocence.

Which I’m guessing is his way of saying ‘actions speak louder than words’.

This parent blogged about the Judge Rotenberg Center.
This parent blogged every time an autistic child was murdered.
This parent blogged when quacks abused autistic people.
This parent blogged when autism was misrepresented in the media.

Those were this parents actions. I’m not sure what Larry’s were.

NT Parents cannot be leaders when it comes to autism advocacy. Did they ever want to be? Were they trying to be? No. I’ve seen nothing that would indicate they were.

The events of the last few days will have an impact. This was played out – and will continue to be so played out – against the backdrop of the web. The web was the enabler that brought autistic people and the parents of autistic people together. As this plays out, the web will record everything. Parents who ‘found’ neurodiversity via the web will find this too.

Right now we stand at a crossroads of opportunity. Right. Now.

Autistic people have had a horrendous time in the past. I know as much from reading the emails and blogs of those who survived it. They have been let down by parent organisations time and again.

But that was the past. At some point autistic people who do not trust parents are going to have to start. We are not those same people who let you down. We came to autism advocacy via the words of autistic people. We did not come via parent led organisations. You call the shots. We get it. Continually harping on what parents have done to you in the past is pointless in this respect. A non-autistic parent being interviewed about a website he created is not a threat to you or your autonomy. Please stop living in the past and try to see the opportunity of right now. Again, we do not want to lead you, we want to support you.

What do you want? An opportunity to wield the power of both autistic and non-autistic people? Or do you want to carry on putting your hands over your eyes, ears and mouths and reminiscing about ‘the bad old days’? Has it really got so bad that now you actually have the opportunity to use this power that you have to invent factions where none exist in order to escape the responsibility of using it? Now that you are very close to getting what you say you’ve always wanted from parents are you worried about accepting the mantle?

Parents are not perfect. We are much newer to this than you. Even those of us who, like me, are not NT but are not autistic either, and who have fought our own battles through the decades are not spat out of an allies-factory somewhere, ready made with all the right answers and actions. We *will* screw up. We *will* get it wrong. We need you to guide us in these times. If you want to lead, then act like leaders.

And the last thing we need is vainglorious challenges to our non-existent actions when you are unable to point out exactly what it is we’ve apparently done. This world we cohabit in is difficult enough without having phantoms to fight.

I would also urge some of you autistic people to be very careful of your own neurobigotry. One person has said that my actions are a total overreaction. Maybe. However, my own neurology makes this impossible for me to avoid sometimes. Would this person be happy with me if I said that their actions were totally antisocial? Or if I said that their inability to perceive a differing neurology indicates their lack of theory of mind? Or would I be accused of ableism? This person also said I should make every effort to separate the message from the personalities involved. I have. My neurological make up makes that very, very difficult to do but if I want to try and pass as normal I can sometimes do it. However, I was surprised to hear such encouragement to assume normalcy from someone I always considered a strong advocate for being who you are at all times.

This entry will solve nothing. Its not intended to. Its merely me letting off steam. I still have no idea about what neurodiversity is anymore or my role (if any) in that movement. I still have no idea what to do with the Hub. However people can rest assured Larry will have no role in deciding its future.

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