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.
Left Brain Right Brain 
A couple of observations:
1. I think the trouble with the phrase “brain damaged” comes from the baggage associated with the word “damaged”. It implies that there is (or in an individual, perhaps *was*) some superior “undamaged” state. The negative value judgement is the problem.
2. “[Pro-]neurodiversity” to me means, simply, “honoring the variety of human wiring” — as it says on the opening page of Kathleen Seidel’s website (www.neurodiversity.com). “Neurodiversity” isn’t a movement; *pro-neurodiversity* on the other hand, is. People are not “neurodiverse”; their neurology may be atypical. I sure as heck do not see this as grounds for contentious debate about inclusion or exclusion regarding *identity*. On the other hand, there is a power imbalance based on sheer numbers. If a majority less in need of change swamps a minority in an activism movement, it dilutes that movement. The way forward when the numbers add up like that, it seems to me, is the ally model that the gay community (among others) has implemented. That is what I was writing about in my allies paper. It’s a way for us to move forward, with the demographics the way they are.
A final word about “cousins”: when autistic people speak about “cousins”, they are referring (in part) to nonautistic people whose neurology may be atypical. (The term “cousin” is also applied to people in the broader autism phenotype who do not have an autism spectrum diagnosis, and whose only neurological atypicality may be their broader autism phenotype characteristics.)
So welcome to being “out” as a cousin, Kev.
“like I guess australia has the problem with that particular frog being introduced into the system.”
It’s a toad actually – a cane toad with morphological similarities to Lenny.
I hope this hasn’t already been said, but I only got about half way down the page and felt the need to address the “brain damaged” issue before going any further.
One could argue (using Kev’s analogy) that no matter what the intent, the words still mean the same. That is – racism is racism (and Kev’s right as well – not knowing the Chinese man’s real name is the proof of the pud).
I’ll avoid another Best rant (I’ll leave that for my own Wiki) but my own view of brain damage (in the context Amanda spoke of) needs to be taken into account. Physical brain damage. That’s an ever present fact that can not be denied. And es – to avoid the phrase others are being used like Aquired Brain Injury.
Those who refer to neurological issues as brain damage – on the other hand – are going up the wrong track. If there is a physical problem, brain surgery may be able to fix it up. But how much do we really know about the brain? Especially the non physical side – where the neuro issues exist. I don’t think we know as much as we think (I’m speaking generally). I’ve always said that the brains of those with an ASD are wired differently in that area. But the brain still works – contrary to the views of the “mercury militia”. There has not been any damage at all.
That’s why I stick to the view that ASD’s are a culture with the same rights as any culture you care to name. One can use various supplements to improve certain symptoms – but you can’t change a culture that way. It exists and will always exist.
“Brain damage” – when applied to the ND world – is akin to racism in my book. That’s why Kev’s analogy was appropriate. It reflects the biggest problem of the lot – the lack of understanding of the different culture, and consequently the intolerance out of the fear of that lack of understanding.
“Brain damage†– when applied to the ND world – is akin to racism in my book.
It doesn’t have to be, though.
I have periventricular leukomalacia (PVL): some of the white matter in my brain has died. It’s technically “brain damage,” and is probably responsible for my neurotype. There are lots of people with the same diagnosis as me who don’t have brain damage–but I don’t see why they would be “neurodiverse” and I wouldn’t.
A lot of people don’t like the term “brain damage” and will go to great lengths to avoid using it; that always made me feel like there was something Really Wrong with the way I was. A neuropsychologist of mine said he didn’t want to use the term “brain damage” in his report, even though it’s accurate. (He eventually did, but he thought it would add a lot of stigma or something). My mom didn’t want me to tell anybody that I was brain-damaged, because “they’ll think I did it to you.”
I see this same shame in neurodiversity advocates all the time. (“We’re not brain-damaged!”) Yes, there are people who use “brain damage” as an insult, but that doesn’t mean they’re using the phrase correctly, or that it’s inherently bad. There are people who use “autistic” as an insult, too, but that doesn’t make “autistic” a shameful word.
…but the brain damage we’re talking about is often-visible actual damage to the brain (like the kind on Kassiane’s brain scan) from a known outside source. Not a nebulous term applied to everyone “ND”.
Alric wrote:
“It’s a toad actually – a cane toad with morphological similarities to Lenny”
Chuckle … I can never remember the names for things any more…
Speaking of Lenny It seems way back when on alt.support autism that Lenny was one of the first persons that I heard use the word “Broader autistic Phenotype”
I didn’t think much of it at the time.
Anyway I listened to Joseph Piven M.D talks that he did on that…
I still don’t know quite what to think of the way the study was done… I guess the characteristics for BAP were taken from Simon Barron Cohens work as far as behavioral traits… I am not sure I agree with a lot of SBC’s conculsions.
V.
Phil wrote:
“Those who refer to neurological issues as brain damage – on the other hand – are going up the wrong track. If there is a physical problem, brain surgery may be able to fix it up. But how much do we really know about the brain?”
Well neuro surgeons know a bit about the brain… sometimes they can fix stuff and sometimes they really make problems worse.
I’m sure you have read studies on differnt parts of the brain being larger or smaller in the imaging studies done on autistics… so there are findings that presume that there are structural abnormalitys.
By the way I met you briefly when you were in San Francisco for the AAsend conference,,, we had lunch in the same room and I believe I was sitting next to you….
Vicky, I’m not Phil Schwartz (I assume that’s who you are talking about). I live in Australia and have never left it.
but the brain damage we’re talking about is often-visible actual damage to the brain (like the kind on Kassiane’s brain scan) from a known outside source. Not a nebulous term applied to everyone “NDâ€.
That wasn’t what I meant, Amanda. Sure – there are a number of varieties of brain damage. And I was talking physical as well when I spoke of that. When I went to the other side I wasn’t talking about any outside source. I was talking about the generic usage of “brain damage” (a la John Best as Kev was saying).
And Vicky – I wasn’t talking about the brain/neuro surgeons when I said we don’t know enough about the brain. I was talking about the layman – ie US. But you’re right, some of them don’t know what they’re doing either.
Such as trying to fix a problem that doesn’t exist.
“Vicky, I’m not Phil Schwartz (I assume that’s who you are talking about). I live in Australia and have never left it.”
Oh my,, Sorrry about that.
My mistake.
V.
Phil,
About Trolls..
Rule of thumb says that we don’t Feed trolls in any shape or form.. By feeding we mean no mentioning their names and No interaction as this is what Trolls thrive on.
A Troll can take any benign word and turn it into something Nasty,,, for them it is Pure sport and the minute you engage with them you have lost.
What a troll wants is endless attention,,, do not give them what they want.. you can’t reason with a Troll because that is a part of the “game”
Most trolls use anonymity to their advantage. Anyone is fair game in their book and any word is fair game.
V.
If you mean Best, Vicky, I disagree. I’ll leave that there because I don’t want to clog Kev’s blog with him.
Hi Phil,,,
I was going to try to write a disclaimer earlier but didn’t … of course everyone is free to do as they choose… Sometimes with information I have stored in my mind it comes out rather dogmatically or whatever…
I guess what I base my opinion on was formed from being on Usenet for so long and seeing what happened there and how we all eventually handled trolls and that was to ignore the “not feed them”
or we had the option of kill fileing them… sorry I can’t spell well..
anyway… Some of my experience was with malicious hackers too… since I am not computer savvy I don’t have the techno fist to take the enemy down so the wisest thing to do would be to steer clear of them…
I know it probably seem like some sort of passive resistance to ignore the beasties but for some reason it seems to work although it does take a collective effort on the community that is under siege..
V.
Yes, well that community does need to work together and not get side tracked by issues brought in for whatever the reason. That’s when trolls pounce – at that weak moment.
You take to now concluded fight here – Best has been all but doing a victory dance on his blog over it. Sick as! It angers me to see a dolt like Best take such a cheap shot at something based on face value.
Really – the only way to deal with that is take away the “voice”. And in the case of Best that means shutting down his blog. If only it was that easy!