Saturday, February 05, 2011

The end of NeuroTypical and opening of Neuro Diversity

I never heard of ‘able bodied’ before a couple years ago. Before then, I had no language for those without disabilities except: “People”, “Humans” That kind of excluding assumption reeks of the privileged view I had but also indicates why unemployment is still almost 80% for Canadians in wheelchairs and why as a minority group, they have to create language like ‘able-bodied’ and ‘Disabled’ or ‘impaired’ instead of ‘crippled’

One thing I found, particularly with groups involving people who are disabled, or seen as disabled, whether that is visible or invisible, the people who decide on who is and isn’t, on what they can do, and those who are in charge of the organizations and language the public learns: these are people who do NOT have that condition. They not only sit above us, but worse, expect us all to act and be the same (oh, if only chronic conditions, impairments, and disability did that but they don't. Even in one condition, experiences are as diverse as the individuals who have it). In all of academic learning, second hand information is not seen the pinnacle compared to first hand and experience, except in those gatekeeping, policing and commanding over disability groups. Being bipolar and talking to bipolar people in a support group are two very different things and are two very different experiences.

That’s why, after sudden onset of bipolar at 20-21, and diagnosis, reading An Unquiet Mind about an academic woman, like me, trying to succeed, finish degrees without being institutionalized and the stigma that brings made me aware of community.

I wasn’t alone. And that helped.
I wanted to be a writer from 13, and I wrote every day towards that goal. So reading Kay Jamison’s other book, Touched with Fire: Manic-Depressive Illness and the Artistic Temperament, told me that my dreams weren’t automatically over. The historical figures showed me that others had struggled and dealt with this issue, with research showing while treatment meant less mild highs of output, I would produce more, over a year ON medication, than not. I had a place in history: if those women and men could do it, so could I.

Sadly, as I joined, and left online communities, I found others who had read the books, and found complete different meanings. “I just read Touched by Fire, so I know this poem I just wrote is brilliant and that the only reason the publishers haven’t printed me is due to their hatred of those with mental illness/genius” I would see written on the boards and sigh. And when a couple of my students in writing started to tell me the same thing, and more “You wouldn’t understand, I’m bipolar, my work by nature is probably beyond your level of appreciating.” I asked how long they worked on the 14 page story. "Two hours." And how long editing? “Editing? I used the spellcheck, don’t worry.” Sigh.

There ARE those with born talent, and you know because they work for it, and reach greater heights…after a lot of work.

But it all too easy, when we are looked down as a minority, to want to see the self as better, somehow. But, what is harder is looking toward a better world by working to build bridges between people:both hard and slow work. It is something I hope all would strive for. But more often, those without the condition or impairment, which can include those placed in charge, or ‘a spokesperson’, and even those within created communities take an easier road: Policing and gatekeeping.

If a person with some authority in a group is more worried to keep out those who don’t use the right language, who don’t seem to fit perfectly, who they have assumed to not be part of this minority/disability group, that is called ‘Policing’ or ‘Gatekeeping’. And some aspect of every minority group does it. In Cardiff it was the lesbians making sure the transsexuals didn’t get in, the gay men didn’t want feminine or effeminate gay men getting in, the churches didn’t want the ‘gays’ (LGBTQI any of them) getting in.

And when I went to the MS society, the MS members were happy to have me there for support groups or ‘Yoga for individuals with limited mobility’ but those in charge, the ones without MS, didn’t want me there, and told me I was not welcome. That hurt me badly, after the non-MS moderator asked the MS members if they wanted me to come back, and all said yes, and I returned to the support group only to be met by the Moderator telling me I wasn’t welcome. It hurt me emotionally so badly I never tried going to support group for three more years. I just joined one. Linda had gotten pre-approval from B. I showed up in my wheelchair and the one person without the medical condition literally stood in my way, blocking me from entering the room, challenging my right to be there. Linda told her B. had approved it.

“Well, she isn’t here, and I haven’t approved it.” was the retort.

“You know this is for (medical condition) ONLY.” She warned me, letting me know she would be watching me.

I asked her “Why are you here?”

“I’m the moderator.”

“So you have (medical condition)”.

“Oh no!”

“So why are you here?”

“I’ve been volunteering here since….”

Having a long history of gatekeeping isn’t the same as understanding what it is like to have (medical condition). And that is what a support group is for, sharing and knowing you aren’t alone. Recreation Integration Victoria has three levels of management (for only three employees) and none are impaired, and yet they have worked there since ….., which they feel gives them the right to determine what equipment and programs people are 'allowed' to have.

‘Policing’ takes away choice, equality and understanding. These are three things I am already lacking, so at the support group, once one of the members with the (medical condition) said, “I am the co-moderator”, I smiled, and joined in. The Gatekeeper moderator told LINDA, not me, afterward that she felt I would make a good addition. Knowing one has been judged and found….acceptable. Yeah, still degrading.

With my illness, and my temporal lobe stroke, I am Neuro Diverse (My brain processes differently than many peoples). TemporaltoFrontal lobe damage due to stroke, seizure or other is the most common cause of dementia in younger people without a genetic disease. We are Neuro Diverse, yet we are not part of NeuroDiversity.
How? Why?

Because ‘Neurodiversity’ is part of the in-speak, the language needed to be created by a lack from the society, of the minority ASD individuals (Autism Spectrum Disorders) or Autism. And Autism, a topic and condition which has gained social awareness, and stereotypes (as many as each eliminated), is under pressure from those who are used to speaking FOR those with ASD from those who want to speak for themselves. That would make sense, right? So groups of ASD individuals created for support, strength, political power, are facing down and challenging the right of organizations, which are used to having non Autism Spectrum individuals in charge, whether that is a group of mothers advocating for autistic spectum children (children grow up, add those voices) or organizations for education and training which are used to saying how and why children and adults feel and learn things, whether that is consistant to actual individuals with the conditions' comments.

For example, the British Columbia website Disability Resource of British Columbia clearly states that they will tell you what to think about those with neurodiversity, and not anyone else, particularly not an organization of that type of neurodiversity:
The Disability Resource Network (DRN) is the provincial organization that
represents individuals who provide programs and services for individuals who
have disabilities, in the British Columbia Post Secondary Education system.
This webpage hosts forums, discussions, workshops and information, like the section on Developmental Disabilities which starts with definitions of Asperger’s and Autism. But it does not include information or tips from those with Autism or Aspergers. No debates please., this webpage is a place for those who will run programs and services for those with disabilities, including Autism, Downs, Brain Injuries. They don’t want information from individuals with Down/Downs syndrome or Autism, because those appointed by government, not the people with the condition will determine how those running programs are educated and what view point they have.

If that doesn’t worry you, I can assure you, it worries me, as for example, under Developmental Disabilities there is a section called, ‘Mentally Handicapped’ which states that terms synonymous with Intellectual Disability are: “"mentally handicapped", "mentally retarded", "developmentally disabled", and "intellectually challenged".” Yes, teaching the program leaders in charge for the next 40 years that those with Aspergers are mentally retarded.

When it comes to fundraising, depending on the organization, and desire, anyone from children to those who ‘pass as normal’ can be pimped for funds. All those shown will be “Suffering”: “SUFFERING with Autism”, “SUFFERING with (insert condition here)” and promising a future and where no left handed people, or people with Autism, or bipolar individuals need exist. Except in each person lives the world, and all the possibilities within it, and more Neuro viewpoints don't change that.

The book, Generation Dead, I reviewed last month, illustrates both the sense of other as well as the way authority figures put up ‘faces’ from ‘not here, no way’ to ‘support you all the way…unless you do something I don’t approve of.” Here, a high school with ‘living impaired’ additional students (teen who came back from the dead) are in union with a Foundation which is the ‘official’ voice of the ‘living impaired’. How did they get to be the voice? Not because the living impaired teens wanted them to be, that is clear. The careful herding of these ‘different’, ‘special’, and other words of labeling and limiting teens show us those who want to speak FOR them, without listening TO them. Others will decide what is and isn’t appropriate, as well as spin the information the teens says to release not the views of the living impaired teen, but of how THEY want the society to view the living impaired teen.

Two examples of this in the book are the class where living impaired teens and high school teens mix to learn more about each other, and the Foundation’s release of marketing and products. The class is moderated by someone from the Foundation, someone who is NOT living impaired. And when Tommy, a living impaired teen tries out and makes the cut for football, the Foundation wants to use him as a spokesperson. This causes a living impaired teen, who like the majority, walk stiff, take a long time to talk, and don’t come close to ‘passing’ to ask, “Why do you only pick those who talk well, walk and move smoothly? Why those who are ALMOST normal?”

Because, the people are another form of product, they are a brand: Living Impaired Teen, the football team brand. The Foundation rolls out stores, a company with T-shirts, and products including a ‘body spray’ for the living impaired. Except that is feeding into public stereotypes, as the living impaired, while yes, back from dying, do not rot, do not smell and also, do not have the ability to smell things, including this body spray. It is an idea, and a brand to sell to the general public, off of stereotypes and entrenching misunderstanding.

This idea resonated with me as I see disability organizations do it all the time, from Colours promoting ‘hip’ wheelchairs and sending out a female wheelchair dance team, to the countless fundraisers dragging out the choosen faces, children to celebs in order to make us associate a disease with a famous name (yet know no more about the disease). The reason I bought a wheelchair from Ti-Lite instead of Colours wasn't just because it was a better chair for my use, but because the person on customer service was a Ti-Lite Chair user in Seattle who could tell me how to deal with the downhills. It was a real person using the product, not a branding, that sold me.

As Autism awareness grows, so does the realization of power and marketing image, whether that is from organizations speaking FOR those with autism, or whether it is from one group of those in the ASD, speaking for the rest of the spectrum. As for example the slick videos put out by Rethinking Autism. In this video called Autistics Speak, celebrities and beautiful people say do voice cuts saying:

“All too often in the World of Autism, celebrity and sex appeal are used to promote Psudo Science and personal Agendas. This exploits autistic people, their families, and the general public. However, RethinkingAutism.com is using those SAME tools, in service of what really matters…” (Individuals with Autism?)
Rethinking Autism puts itself forward as an ‘Autism individuals organization’ which in further enforced by the ‘Our Voices’ link on the webpage. However, it is created by Dana Commandatore, the ‘Mother of an autistic boy’ (“We do this FOR our son” – what about ‘with’ what about ‘after listening to our son’?). Though they use first names to obscure identities: actor Max Martini, who is in the Video ‘Autistics Speak’ is not autistic, but is a supporter of Cure Autism Now for his child. Leeann Tweeden, the professional model, who voices most of the video is not autistic, but the ‘face’ of Rethinking Autism. Even Dana’s actor husband is in the video (also not Autistic, nor is Dana). During parts where people we must assume have autism talk about identity, we see the hands fidget and a torso, but the pictures of non-autistic models and celebrities are put up as the face.

So, yes, that mom really doesn’t mind lying, and exploiting autistic individuals, for personal agendas at Rethinking Austism

In part of the video that makes me ill, an autistic man speaks about how the debate should be about his quality of life and those like him, but the images we see are of Dana’s Husband, not the speaker. Another model, as a ‘voices’ says that videos should ‘change how autistcs are viewed’ (a word choice indicating both a position outside the group talked about but one of authority; someone who can determine the meaning of ‘autistic). The entire video, through PRESENTED as Autistic voices, is forgetting that they are talking about individuals, not power plays because so few involved are part of those who are affected directly. Meanwhile the name Dana shows up on the screen, voiced for representing those with autism who cannot speak (“Just because I don’t speak, doesn’t mean I don’t have anything to say”). But instead of Dana, we see model Leeanne, elected in 2008 as a Top Hooters Girl of all Time. We watch as Leeanne does a photo shoot (yes, that is the 'face of autism' for ReThinking Autism), which is somehow going represents the issues of those more impaired functioning individuals with autism?

It is a video supposedly FOR people with Autism, and the voices of those with autism, and in showing single names, implies that people with Autism are being shown, and and talking. Except: not one person face who has autism is shown (if you read the start of the comments, Dana from Rethinking Austism explains her viewpoints and reasons).

In contrast there is Christopher Elf, a 35 year old man with autism who lives with his parents and has a video blog. His first of 10 videos about Autism explains what interests him, which are elf ears, and tells us how they are made, how they are put on and how they are superglued to your ears. His video isn’t using a supermodel, or words ripped from the debates between organizations created by those without autism on how ASD will be researched and viewed. It is about how one individual with autism shares his passion. “It’s REAL.” Linda says, summing up the difference between the illusion presented by ReThinking Austism: Autism Speaks and, Christopher who is autistic and is speaking. But I don’t think the organizations want to listen to him, or accept the diversity he demonstrates.
Neurodiversity isn’t supposed to be a ‘catchword’, it is about how real individuals process things differently, sometimes into verbal and non-verbal expressions and behavior. And if we care about the people of our society, understanding Neurodiversity then includes everyone from Down/Downs Syndrome to Williams, from those who are face blind, dyslexic to those who have had strokes, seizures and other injuries which create different ways of thinking, seeing and expressing ourselves in the society and world.

When Dr. Temple Grandin, the bovine/animal doctor with autism from Oliver Sacks’ book, spoke in Vancouver recently, the subject was about a world inclusive of autistic adults. Because the raising of kids, the moms have taken over the debate, the children are what bring in funds to the organizations. But children grow up, and have, and many are late diagnosed, so there are more adults with autism than children, but we don’t have a society prepared to accept that. This is a subject that Dr. Oliver Sacks (who is face blind, by the by) also speaks on, how ‘autistic’ is so linked with ‘child’ or ‘youth’ that the majority of those on the austistic spectrum (ASD), are ignored.

In North America and parts of Europe, the recognition of autism has given rise to a strong young blogging autistic community, one which like other minorities, gains identity with understanding they are not alone. But one, which by the command of technology and expression creates a two tiered grouping. There are the high functioning individuals with Asperger’s Syndrome, high IQ, high functioning austistic who often choose ‘autism’ to define themselves versus those who aren’t, the ‘NT’ (neurotypical). These bloggers, often university/college educated can using bridging language which extends to more people, and talks about subjects which are broader in scope. And whether intended or not, these become the voice for austism.

Much like the bipolar book that helped me, Touched with Fire, so there are books and lists of the famous individuals who may fit on the autism spectrum from Albert Einstein, Isaac Newton and Bill Gates. Indeed, Prof. Michael Fitzgerald has created a career niche on being an ‘expert’ on autism (he isn’t ASD), and writing books not just identifying famous historical figures from Amadus Mozart to Lewis Carrol and Emily Dickenson were autistic but ‘proving’ Autism IS connected to genius (well in men and ‘male minds): Autism and Creativity, Is there a link between autism in men and exceptional ability?

Prof Michael Fitzgerald’s other books include: Genius Genes: How Asperger Talents Changed the World, The Genesis Of Artistic Creativity: Asperger's Syndrome And The Arts, Unstoppable Brilliance: Irish Genius’ and Aspergers’ Syndrome among others. Okay, this is beyond ‘accepting’, this is downright attractive, so please sign me up for austim: because I want to change the world and be a genuis.

Fitzgerald explains in his book, “Asperger’s Syndrome: Gift of Curse” that it is a genetic gift of the highest order while his book Austim and Creativity states that for males (and male minds) autism is “a prerequisite of genius” – citing individuals from Tesla to Jonathan Swift. Though his work is heavily criticized for his lax anecdotal diagnosis (in Lewis Carroll’s case he diagnoses him as autistic based on how he could not ‘play make believe’, yet Carroll wrote Alice in Wonderland, and had an extensive photography collection of prepubescent naked girls in fantasy settings, topics which did not get included in the diagnosis or the book). Also he is criticized for his broad and unproven statements like people with AS "suffered unbearably" but also do things "a hundred times better than the average person". Eh? 100 times? Unbearable suffering, how does he know exactly?

Is Prof. Michael Fitzgerald jumping on a popular wagon of individuals and parents who want to see this condition, newly aware in societies’ mind, as a ‘super-gift’? Considering before this he did two books on the previous condition that swept awareness: Attention Hyperactivity Disorder, I think so.

I am not saying there is not ADHD, because there IS! Anyone who says there isn’t, I would like to lock you in a long car trip with a few adult friends I know once their meds wear off. Nor am I saying that there is no Aspergers. But when did the agenda go from society understanding and accepting those who have neurodiversity to those with Aspergers being the focus?

This focus has cropped up in the Austistic blogging circles, and forums as well, not just the question of why non-austistic people are setting the agenda, but how those who are critical thinkers, who fit enough well enough to speak publically, and to represent the upper autistic point of view have BECOME the autistic point of view.

In a list on Neurotypical privilege which is both spot on and ironic (any list with 275 things you MUST know is ironic whether it wants to be or not) has gone around the autistic community: List of Neurotypical Privilege. While it starts as Neuro diverse inclusive, it ends up with ‘Autistic’ creeping in and taking over the list. The points are valid, why do moms identify themselves as “Autistic Moms” when they don’t have autism? The ironic part is that it is 275 points that you as a neurotypical should know, and understand about your privilege. Some are universal, but many are about discrimination in University and jobs, not the cost of helmets, the need for rituals, the colors that make you have nausea, things that calm you or how being touched may be physically painful, even as a child, and even from parents. Plus, staring is more of a social convention (Williams Children do it – a LOT, Fragile X children will do anything to avoid it).

The big analytical Austistic/Asperger bloggers, Ballatexistenz, Asperger Square 8, Biodiverse Resistance, Andrea’s Buzzing About don’t link to Mother of Shrek, Faces of Austim, or Christopher Elf a 35 year old who likes dressing as an elf, and has a video blog, as well a 10 part blog on his autism and Aspie 4 life, an older adult diagnosed with Austim. One group is made up of people giving academic papers, and doctors and the other group is more diverse, sometimes less about rights and more about their life: living in group homes, videos of a man with elf ears superglued to his head. Neurodiversity. And Reality, like Marla blog with Maize, discribing day by day how she learned and how they work together to make boundries and avoid meltdowns, in order for Maize to have a richer life. An example is her blog post for Sensory Processing Disorder Awareness month, illustrated with pictures of Maize at under five, with the challenge of getting a hair cut for Maize (real issues!). Or how Mother of Shrek’s post: Autistic Shower Bondage shows with humor the difficulties in finding a way to shower C., her adult son with autism whose head banging (even more and harder when he is happy) breaks helmets, tiles, and walls. How then to make a bathroom that is safe, but he can enjoy? When all her search finds is whips, chains and gag masks, it shows how unprepared society is for autistic children and adults outside of institutions.

Nuerodiversity used to mean just that: the diversity of the brain, or ways of thinking, processing and being, which includes Autism Spectrum Disorder, William’s Syndrome, Fragile X and other Chromosome syndromes, Downs, late brain injury but also includes children tested as ‘gifted’. But when schools get $30,000-$45,000 for each child with a level 3 learning disability and $300 for each gifted child, you can guess where the focus is going to be. One school I worked at had a quota, and budget time, the testers came around because they needed another 1 or 2 ‘learning difficulties’ kids from each class.

Neurodiversity could be an umbrella to bring real change to laws, to ensure support for parents, children and adults with Neurodiversity. And with the internet, we could have video blogs for Down/s adults, the same way I have seen one for a 19 year old Williams Syndrome female. Getting the voice of the actual individuals out gives the option at least for making them partners in organizations and planning, and taking control away from those who are given decades old material and get to play ‘little god’ in schools, homes and centers.

As much as Dave Hindsburger does on his blog for Down/s Children, I am sure he would support the voices and public blogs of Down/s children and adults as much as I do. The job of any advocate is to hope for a society which makes their job redundant.

My conversations with individuals with Downs was about jobs, about hobbies, about boyfriends, and yes, about sex. So, like all my conversations, pretty much. And yes, those individuals I talked to were living independently and likely were high functioning? But I can’t know until I hear from others with Downs syndrome, not just those who caretake them.

When I first published this blog, I was not aware of a Down/s syndrome blog, only a William's Syndrome teenage. But I found and recommend My Name is Sarah, a blog of an adult with Down Syndrome comprised of her writing, videos and pictures to illustrate her day and express her viewpoints.

The problem of how other's stereotypes and limitations as it is now is shown in the complexities of taboos in Pumpkin, a Christina Ricci starring film, is that society doesn’t really WANT neurodiversity incorporated into it. Nor do all those in the health care field and organizations who have made their living being the official voice of those with neurodiversity. Cure Autism Now/Autism Speaks is particularly criticized for the large number of individuals getting high six figure incomes ($600,000+?) in a ‘charity’.

In Pumpkin, the falling in love of Ricci’s character Carolyn for ‘Pumpkin’ (whose is older than Carolyn, but whose mother freaks when she finds him with his father’s porn stash from the attic: “That’s not for you, you are a little BOY!”). Carolyn is later accused of raping Pumpkin after they sleep together, regardless he is in his 20’s and it is consentual. And it is not an abstract taboo since in Canada it is still permissible to sterilize for ‘therapeutic purposes’ which is still open to interpretation for those under care. British Columbia, my province still targeted those who were ‘retarded’ as I was deemed, but quietly eliminated the law in the 70’s and destroyed the evidence. I met the not so nice man who played god, and still does, he just doesn’t sterilize against their will, ANY MORE, children in or from ‘special schools’ in case they might have sex (oh forbid!).

That might be why in the UK and EU mothers with fetus’s with Down's Syndrome are encouraged to abort, and over the last 20 years, 92% have. That seems an adamant statement against neurodiversity.

These taboos, and social pressures against incorporating and understanding individuals with neurodiversity is why I don’t use the term Neurotypical (NT), which has been picked up by Autism groups along with those with aspergers. Beyond the basic illogical idea that there is some sort of ‘typical’ neurology, when for thousands of years, the whole, ‘who can understand men/women’ has been going on, it eliminates the fact that EVERY person is unique in how they process the world. The other issue is that for that ‘in group’ language, NT needs to mean ‘us’ versus ‘them’. And I have never known how people know who is the ‘them’?Are those with strokes ‘us’, and not NT? Or those with the 2,500 different seizure disorders? Or those with invisible illnesses, like depression and bipolar?

Is there discrimination against those who do not ‘fit in’ to expected social standards in terms of behavior and thinking? Oh yes. For every rose, there is the wrap of thorns, at least that how it seems most days. But I would rather go after widening those parameters of 'us' and work together for change than create a ‘Neurotypcial Boogieperson” which ends up hurting and excluding those who are part of ‘us’ (currently those mostly high end Autism).

Should it matter if I say that I know, from the inside, what it is like, being neurologically different my whole life? Or that I have autism (or something they could never figure out?). No. And if it does, how exactly did I go from NT to ND in this essay? Or was it just the perception that changed? And what does that say?

I don’t want policing, and I don’t want ‘authorities’ to establish themselves because it gets away from what is important: individuals. If the energy is spent making sure that people are all like us, there will ALWAYS be people excluded. That is simply because no matter what, when it comes to humans, there is always an exception. For example JFK, the President of the US was dyslexic. So he was Neurodiverse. But his dyslexia also allowed him to read 10 times the speed of ‘average’ at 2,500 words a minute. So now Neurotypical? No, because the dyslexia caused his brain to completely separate his language and vocab centers into two different lobes, just as it did with me, which is why I can write even when I can’t talk.

There are always exceptions, and how about spending time and energy into educating, building bridges and including more into the Neurodiverse umbrella? When that time and energy is spent picking out some ‘baddie’ who is the cause of all the problems, it is just a circle of discrimination and counter attack without any vested intested. If you want change, try including dementia and forgetfulness into Neurodiverse, and suddenly the minority becomes an eventual majority. Of course, dementia itself is a taboo, as the YA book Pop indicates when the character with dementia commits suicide to avoid it.

There is so much ignorance and hurt that goes on already, why add to it, as my Grandfather would say while splitting wood or making shingles, ‘If you can stand around watching, then you can pick up an axe and help me work.”

33 comments:

Dana said...

A friend just sent this to me. I think you have a misconception about me and my website. My son is 8 and can't speak out on quality of life issues, so I advocate for him. In that process I met many autistics adults across the country and have decided to try to help them get their message out as well. I never actually put my son in videos for I want that to be a decision that he makes when he is an adult, not something forced on him as his parent.

I am trying to fight the message by Jenny McCarthy that autism is a disease and can be cured. I originally decided to fight that message using the same thing that Jenny did to get famous, a nice body. You might not like the delivery, but the message got out there to an audience that would never have access to such information.

Regarding the autistics speak video. I wanted it to be autistic adults but all of my autistic friends live in other states. I make the videos with my own money and the generosity of others, so I don't have any money to fly people from all over the country. I was able to get them to do voiceovers and I combined the two. I am not a charity or an organization. It's just me and my husband.

My next video features an autistic woman, so maybe you will like that one.

I don't really think I'm the enemy, but you seem to think I am. I'm not here to tell you what to think, just what I actually stand for. If you still don't like it, then I guess you don't really believe that parents should advocate for a better quality of life for their children.

I just felt it necessary to write you for I feel you have a misconception of who I am and my intentions. It is important to note that I DO NOT MAKE ANY MONEY off RethinkingAutism.com. I do not accept any money for my advocacy and I certainly am not a shill for big pharma (many of the anti-vax folks call me this).

Just felt I should clear that up.

wendryn said...

"The job of any advocate is to hope for a society which makes their job redundant."

That is an excellent quote, and very true.

You talk about talking to people with Down Syndrome about hopes and dreams. I wish you could talk to the ones who can't live on their own, who need care, but a lot of them can't. My little brother wasn't high functioning enough to have those conversations. We were his advocates, we spoke for him when he wouldn't or couldn't speak for himself, and we did the best we could. I understand your frustration with people taking over when others really do have the voice to speak, but there are a lot of us who have been advocates because otherwise no one would or could speak for these people.

I'm not saying everything is fine and dandy with advocates and who they speak for - I know they aren't. Some of us have spoken because we had to, though, and we speak from a place of love and work towards acceptance.

Linda McClung said...

Wow, Beth, this is a really impressive piece. The time you spent on it (12 hours yesterday, and many more throughout the week) really come through in your logic and progression from one topic to the other.

About half way through, I was thinking that there is no such thing as neurotypical as everyone thinks differently, we all see the world a little differently. I was happy to see you say something similar towards the end.

Like you, I see that every type of group I can think of, has discrimination in one form or another: religion, sexual orientation, intelligence, sports, medical illnesses, and even support groups. It is frustrating when you are the one being ostracized. And when you are one of the 'in' crowd it can be easy to forget that there are others who aren't.

Even with caregiver support groups - support for caregivers is a real need. But do the care recipients receive a similar support network? Rarely.

I am glad you found Touched By Fire as it would have been a real loss to society if you had given up your dreams of writing - and more importantly the practice and work you put into it.

I really liked your pictures, especially the girl with the sunflowers, the girl in the world and the girl in clover.

And grandfather's comment - how appropriate. We can all do something about it, can' we?

Elizabeth McClung said...

I knew this was going to be a topic that brings up feeling and opinions. Which is good because without hearing them, we can't learn, I can't learn, we can't change.

Elizabeth McClung said...

Dana: I am glad you gave your view and opinion as you say in "Autistics Speak" with actors "Let's change the conversation (about austism) one video at a time" - so I think this is a new converstion.

I had no opinion on you making money or not. I specifically talked about Cure Autism Now/Autism Speaks which this article 'Why autistic people don't like Autism Speaks' does better than I do in the money trail:
http://www.examiner.com/autism-in-long-island/why-autistic-people-don-t-like-autism-speaks#comments

I believe that if the purpose of ReThinking Autism is to listen to the voices of autistic individuals as being not just equal but actually stronger stakeholders in the decisions organizations make (since they live with the consequences), then individuals with autism should be part of that process. But is that the purpose? What IS 'the message'?

The video is entitled: Autistics Speaks, and presents a view that we will be hearing the viewpoints of individuals with autism.

If you wanted to make a video called, "I think Jenny McCarthy is a self obsessed celebrity" as you outline in your interview/article here then please call it that: http://bighollywood.breitbart.com/dcommandatore/2010/04/08/autism-needs-progress-not-self-obsessed-celebrities/#idc-cover

Elizabeth McClung said...

Dana (Part II): You have created eight videos, many/most definately use sexual cheesecake in order to make points that are, well, close to spam (I still don't get what Pet Peeves is about - it is Chelation Therapy For Seniors? About the scientific process of chelation in Geology?). Your ads seem to be some part of a conversation that we've walked into the middle of, like how instead of 'Autistics Speak' being about..well, people with autism speaking, it is about you getting back at Jenny McCarthy.

Is that what you meant by saying in the video that you were using the same methods (exploiting people with autism, using celebrities and sex appeal and promoting personal agendas?)??

If you call up your local autism/aspbergers society or go to the local University and put up a flier telling people you are making a video with the star from Tour of Duty, and other actors and need people on the Autism Spectrum to give opinions and let their voice be heard - you would have dozens to hundred of people without the need for airlines.

The excuse that you can trip over models and actors but can't find a single person with autism to actual allow to be seen is sad, and indicates how insular your world and organization is. Do you think there even should be a ReThinking Autism if you don't know any autisic individuals in the city where you and the son you advocate for live?

There are many ways to advocate for your son. Having a sexy model doing videos is not one of the top choices for moms with autistic sons.

And what did you think on the REST of the 4000 words about Neuro Diversity?

I believe a message got out, but right now that message is: ReThinking Autism lies about letting those with autism have an equal part.

I would repeat your words back, "I don't really think I'm the enemy, but you seem to think I am."

For example: you say the next video features an autistic woman and maybe I will like that. Well, how do people with autism like it? How do the other moms with autistic sons like it? What does Mother of Shrek think?

Your website has 'Our Voices' - who is 'our'? Those on the autism spectrum? Parents? Advocates? Actors?

Does having a desire to advocate mean using misinformation and 'any means' is okay? I am not seeing a lot of advocating for eight, or ten, or 12 year old autistic kids.

If the only autisic individuals or adults you know are those you meet AFTER you already started travelling, interviewing, and advocating that indicates a distance from the 'Real'. To advocate BEFORE knowing those you advocate about?

As you quote in your article: “Many of us believe that wrongs aren't wrong if they are done by nice people like ourselves.”

One conversation at a time: I don't have professional editing, or cameras, or actors or models, so I hope this will have to do.

I hope other people with autism are able to add to the discussion.

Elizabeth McClung said...

Wendryn: I wish I could talk to those with Down/s who can't live on their own as well, as I and I think many others are very under educated in this area.

I think hearing from advocates is important, but I think as advocates would want to hear from the individuals they advocate for (or I hope they would), I would love to be able to see a video blog/s from those with Down/s for firsthand information.

I already have a legally empowered advocate for the parts that I can't do, in the same way that I can't live alone. No, I don't have Down/s, but I am aware that if the advocate messes up the person advocated for, they are the ones who pay the price. I think many are aware that for any live in facility there are 'good ones' and ones that meet basic needs. The same occurs with advocates, those who go to the gold limit, and those who meet minimum. That is scary when being the person advocated for.

One thing I like about Mother of Shrek is she details the ups and downs of advocacy, when C. is in a good home or a bad, and the consequences (for example, he was causing himself head injury because she got him in a good place and he was so happy - how to deal with that?). It is a hard and often thankless job, but one which many of us will end up requiring ourselves (to be advocated for).

I want educating which is why I would love to have neuro diversity NOT split into so many areas.

Linda: Thanks for your comments. I think your assistance to help me continue writing while trying to find medications that worked helped a great deal. And thank you for advocating now. Yes, those who get the voices, get the support often - which is why children often have far more options than adults in terms of organizations and options, because they have more advocates. Also the advocates have more of a community - the disability RRSP for Canada is something, about the only thing that advocates for adult individuals needing long term care have gotten.

And yes, I think we are all diverse, and I would hope one day in a world where all those individual ways of thinking are valued.

SharonMV said...

Dear Beth,
this is an important blog. Just today, I was watching Jeopardy as Alex was interviewing one contestant, he said I understand your son has "an affliction".Yes, the contestant's son is autistic. This was enough to make me feel sick, I wonder how the boy's father kept his composure.

I found a lot of knowledge & help from Dr. Jamison's books too. I read Touched by Fire first. Later I found out that my neuro-psychiatric symptoms were part of my Lupus. I read one article that said the psychiatric diversity ( I think that is a good way to say it) caused by Lupus is similar to bi-polar. And the MRI I had recently showed small areas of past brain damage cased by vasculitis (in my case most likely Lupus). So, I am not connitively or psychiatricly impaired - I am a small point on the spectrum of neuro-diversity.

Sharon

Neil said...

I would like to recommend the book "Born on a Blue Day" by Daniel Tammet. He was diagnosed in his 20s as having Aspergers. He's a very good writer.

Dana, I understand you not wanting to exhibit your son (or expose us to him?); I applaud you for not acting like P.T. Barnum. But surely you could have shown consenting adults with Autism/ASD from your own area? Or are beauty and friendship more valuable than honesty and reality?

Closer to home, I think one of my own sons may have Aspergers. His grade 1 teacher wanted him tested,but the school board said that a doctor had to do it, while the doctor insisted it was the school board's responsibility, and it never got done. When I mentioned it to his grade 9 teachers, they said they'd send us the forms to get him tested; but three months later, they told me that the school board can't make that diagnosis; a doctor has to order the testing, so we're back on that merry-go-round again.

Beth, this is a wonderful post. I suppose that there are some people who really do need someone to speak for them; but let it be someone who truly understands them. Dana, for instance - but it's not about Dana, it's about her son.

Others with disabilities could speak for themselves, but "we" don't have the time or inclination to wait while they make themselves understood. Then the overzealous Rick Hansens of the world homogenize those disabilities to "us" while not recognizing the ones who are different to "them".

Have I got that compartmented right?

Thank you, Beth, for teaching me to slow down and take the time to listen to "Them."

Love and zen hugs,
Neil

Dana said...

We are obviously coming at this from very different directions but I would hope that you can appreciate my intentions are meant to help. There will be people that agree and people that don't. I respect your input though I still think you have some misconceptions about my intent and those who helped. Mother of Shrek is in one of my videos. Maybe you missed that one.

cheryl g said...

Thank you for a really well researched, well written post. It gives me a lot to think about. I always cringe whenever the words "normal" and "typical" are used. We are all individuals with our own perceptions and ways of looking at the world. There really is no typical.

"...but worse, expect us all to act and be the same..."

That's the line that resonates with me. I get so tired of hearing, "My aunt/friend/3rd cousin had depression but she did X and is fine now." That's great for them but I'm me - not them.

I like the quote from your grandfather. I heard a man on TV yesterday say, "I can't change the whole world but I can change my world and that change will spread."

I liked that idea. Change what I can locally and that change can continue to grow and spread.

Kate J said...

Beth, this was a really interesting post, which has given me a whole lot to think about - and the comments and your answers too. I have nothing to add - as I'm not disabled myself, or a carer or family member or whatever, I'm not sure I'd feel qualified to anyway. But a really informative, challenging and thought-provoking post. Thank you!
Love & peace

Elizabeth McClung said...

Dana: I like your 'get to know an autistic adult' video, I'm not sure which one has mother of Shrek in it - was it C.?

I don't think we need to have different viewpoints if making sure that there is a world in which those with all types of neuro diversity are heard and included.

Yes, our approaches are different, as you use video format and seem to have access to interview spaces which most don't. But like you said, it is your dime, and what you chose to make with it is your choice. I hope that when the 'our voices' is included in your webpage, that includes some adults and perhaps teens with autism as well - but I don't know who 'our voice' is, because when your dime choses to skew perception and reality, I guess my dime is free to point it out.

How about getting aspbergersquare8 and others as consultants?

As for me, I'll be waiting for a 'Autistic are lesbians too' (and all of LGBT) video.

SharonMV said...

I once saw a very good film about a young autistic woman who is non-verbal. She was able to communicate through alphabet boards, computers. She was attending college and doing well. I wish I could remember her name & the title of the documentary. This young women required aides to help her in school & with daily life. And she had behaviors & things she liked to do. for instance she enjoyed playing with spoons & flowing water - changing the & manipulating the water-flow from a faucet. I think it both fascinated and calmed her. She wanted to speak out for non-verbal autistic people, and she did.

I will try & look up the name of this documentary. I saw it on tV, I think PBS several years ago.

Sharon

Elizabeth McClung said...

Sharon: Thank would be great, I would really like to see, that and I think many others would as well. I want to know enough and experience enough to make a world and space around me so any Neuro Diverse person can feel at home.

SharonMV said...

Found it Beth - It's called "Autism is a Word". the young woman is Sue Rubin. I think It's available on Amazon.

jypsy said...

"Autism is a World" (not "word").

Here's another couple of shorts - "Something About Us" http://video.google.com/videoplay?docid=1373348481069145464#

"Positively Autistic" http://www.cbc.ca/thenational/indepthanalysis/story/2009/10/06/national-positivelyautistic.html

Elizabeth McClung said...

Thank you Sharon for finding the title.

Thank you for the links jypsy, I am curious about your thoughts.

In the UK this one is used a great deal and may not be as widely watched over here:
A is for Autism is an older DVD of shorts, drawn by or based on sketches by those with different autism spectrum, includes a short by Temple Grandin.

jypsy said...

"A is for Autism" is one of my favourites. We had someone from England send it over in the early 90's and a guy in the US made NA friendly copies for us. I have it on VHS and now DVD (a DVD copy of the VHS tape copy of the PAL tape...) I always smile when I watch it.

"I am curious about your thoughts" is way too open ended a gesture for me right now... but we can work on it...

jypsy said...

...or maybe we're talking about 2 different things? This was on TV (Channel 4 Maybe?) A half hour, made for TV, Temple (her story & voice) were in it, and a guy who drew trains, there was a lot of his train animation in it...

Kate J said...

Did you ever hear Ian Dury's song 'Spasticus Autisticus'? He did it for the UN Year of Disability but it was a bit too radical I guess and got banned by BBC etc. Dury himself had polio and I think he was bipolar as well. I lot of young 'disabled' activists really liked the song at the time but I'd rather forgotten it until I saw recent biopic of Dury (entitled Sex & Drugs & Rock'n'Roll)
Love & peace

Drake said...

Hey my sweet...

* awkward silence *

It's been way too long...unforgiveable even

* stares at feet *

I don't have much to say right now, just * HUGE WARM HUG *

As to why I have reappeared so suddenly? I don't know. Maybe it's the Lithium...maybe guilt for having treated such a treasured friend with nothing but silence...

You have no Idea how much your postcards has meant to me over the years...

Aviatrix said...

Excellent blog. The book in the living-impaired high school students should be a television show so teenagers will see it. Biting!

And please tell me the elf-ears kid uses latex prosthetic adhesive and you were using hyperbole when you called it superglue.

Elizabeth McClung said...

Hi Drake!

Hi Aviatrix, watch the video,and you can see the glue for yourself. I dunno, I remember in art class that superglue hurts and burns, but maybe he has another glue?

tinarussell said...

This is great! Yes, I’m a little sick of the constant victimization, and the mobilization of people to find a “cure” for autism or ADD or whatever. It’s like, as soon as you’re different, there must be a way to make you “the same,” and someone with the power to decide what that is. Besides, the concept of a cure for simply being different made X-Men 3 way too top-heavy with plot elements.

If there were a cure for ADD, I’m not sure I would take it... sure, I hate dealing with constantly forgetting things and taking forever to get anything done, but what else would be lost of I took those away? Given that ADD never evolved out of us, with what other traits might it be linked? I treat my ADD with meds so that I can function, but removing it entirely would be more playing God than I’d be comfortable with.

Stephanie said...

Language is an evolving means of communication. Words and their meanings change.

"Neurodiversity" is not an inherently exclusive word, but it can be used in an exclusive way. The way, in my opinion, to keep it broad is to use it broadly.

I'm the mother of three children with autism, both my husband and I are "near" the autism spectrum, but I also experience cyclic depression, my husband has a diagnosis of bi-polar, and we both have been considered for OCD. Our family is neurodiverse, not just because of autism, but because of all the other stuff, too.

My step-son, however, is neurotypical. That word is not inherently deragotory, nor do I mean it that way (though, I know others do). What I mean when I say that, the way I define it in the book I'm writing, is that societies have a perceived neurological norm. "Perceived" is a key word there.

You are right. Everyone is neurologically diverse, because everyone's neurology is unique. But there is an expected standard, a statistical norm. To deny that removes the ability for those within that norm, those who see deviations from that norm as "abnormal" or "disorders" to see that the norm is part of a whole that includes everyone.

Elizabeth McClung said...

Stephanie: Sigh, 'typical!' - of course 'That word is not inherently deragotory, nor do I mean it that way' - except that I have yet to find a group that will go, yup, they are 'Diverse', and those are 'Bright Lights' and me, I am one of the 'Typical'.

Words change and also gain meaning in subgroups. If the meaning cannot be accepted by the whole however, it has no meaning (or as my linguistics teacher said, "50 million housewives can't be wrong"), which is why in Harry Potter the general population of the UK didn't go around calling each other, 'muggle' or 'mudblood', 'muds', only those who went to an elite exclusive school did that.

Linquistically, you and are are brain damaged, since we both have brains which are not able to operate at capacity in a stable form due to missing components. However, that is not how I introduce myself. Neuro Diverse helps me, but not at the point where I shove another down ('Diverse' - many paths, 'Typical' - one path) - if you wish you use the definition of exhibiting the characteristics of a group or catagory, that would actually be those with autism, with bi-polar disorder, as the DSM IV and V outline what the 'typical' characteristics are, of that group - one can hardly demand to break free of being 'classified' while holding up our classifications as proof that we are entitled to call others and ourselves as we wish.

Statistical Norms, when it comes to minds the Eugenic's books from the American Eugenic's society of 1920, and my own great aunt Nellie McClung, ensured the purity and uplift of those norms through the involuntary castration of thousands in the 30's, while US researchers found links to everything from seizure disorders to alcholism, way back 90 years ago in order to know who to institutionalize so they did not breed. The last book, The Bell Curve, which 'objectively' looked at mental 'norms', stated almost exactly what you did, it just happened to also note that statistically US blacks make up the lower part of the curve, in intellegence (I think this was the early 90's) - oddly, this book was not that popular. And I have no plan to be part of any group who wants to start classifying those other than themselves with differing words for 'other'. To Michael Bailey, anyone who is gay, is atypical (and needs to be fixed), to others, it is anyone with Downs', with CP, 80 years ago it was those who used their left hands (which is why they were bound, as my relatives hand's were).

If Neurotypical is a neutral word as you describe, then you will have no problem if I assume that you and your husband are both Neurotypicals, since it has no negative meaning, nor so the doctors say, does 'crazy' for bipolar, which gets lots of bipolar people shot by security forces while holding scissors and such.

I will continue to advocate a world which embraces all viewpoints, of all people and I have yet to find an art school of 'Neurotypicals' which all keep producing the same art, the same books, the same music - the one thing humans are is diverse, and I like it.

Stephanie said...

"Words change and also gain meaning in subgroups. If the meaning cannot be accepted by the whole however, it has no meaning ..."

That is a problem with language as a means to communicate. It's one of our better tools, but it is flawed, because words do not mean the same thing to everyone. I have never met a word that has a single accepted meaning that is shared by everyone. Thus, from your premise, words have no meaning at all.

Yet, we use them.

One of the things I try to do when I talk about neurodiversity is to distinguish terms.

Neurological diversity, for example, refers to the fact that all human beings have a unique neurological makeup. Thus, everyone is neurologically diverse.

Neurodiverse refers to a sense of identity, particularly one that identifies with a neurological sub-set that is often labeled as disordered, disabled, or other value-laden terms that imply brokenness.

Neurotypical refers to individuals who are able to and choose to conform with the neurological traits expected by their society--it's perception based.

Neurodiversity refers to the social justice movement that is affiliated with the disability rights movement.

These distinctions are not widely accepted, but I'm working on it.

Personally, I would prefer not to have to identify as neurodiverse or neurotypical or anything but myself. I would prefer not to have to identify as white (which is what I am visually, i.e. pale skinned) or to clarify that I am bi-racial (that I have Sioux ancestors). I would prefer my gender, my marital status, my intelligence and the like not to matter. I would prefer to be seen as an individual and to be accepted as I am--to be judged by my actions.

And I work towards all of that.

But, in the meantime, I have a husband with bi-polar who has never been accommodated at school or at work, and has failed out of schools and lost all hope of holding a job because of it. In the meantime, I have three children who need accommodations, and are thankfully granted them, in the school, but the seemingly ever-present threat that their needs will be blamed for budget cuts to the football team or some such nonesense.

There are people who really don't understand that what my husband needs and what my children needs is different than what they need, and when they do understand that they assume my husband or my children are less valuable because their needs are different. I use neurotypical to communicate that difference, and it helps communicate "different" not "less than."

Perhaps someday we will be socially developed enough not to distinguish between needs, because we will recognize that individuals all have unique needs. The statement seems obvious enough, but for some reason it's not. Because enough of the people who are perceived as normal can get by in school, work, and living systems that do not meet their individual needs, many assume others who cannot are either less than themselves or aren't trying hard enough. How do you address that assumption without drawing attention that many can get by while others cannot?

Elizabeth McClung said...

Stephanie: I believe we are on the same side, as I want to move toward a society which is not impaired. The society does not currently accomodate a spectrum (pretty much any spectrum - as the MIT study where they sent out resume's with African-American names and the same resume with traditional upper class white names and 1 in 10 'white' resumes got shortlisted while the same resume only got 1 in 15 for African American names), whether that is gender presentation difference, sexual orientation difference, racial difference, religious difference, disability or neurodiversity.

I think we both want to work toward a society where people do not assume that all are accomodated when in fact the framework of the society is impaired in accepting diversity and accomodating it. In the EU, when I worked at the University in the UK, accomodating neurodiversity was not only part of teaching, but it was the law - though it too was developing as understanding changed, and there were accessibility departments to help all students have equal learning experiences. So that meant having pink or yellow paper handouts for those with dyslexia (as the ability to read and recall is improved on non-white paper), oral study group and exams for those who have oral processing, sign language exams and transcripts as well as what other accomodations were needed.

It is a model I hope will spread.

I think that both of us, from our personal experience and with those we love, want to have a world of equality, and accessibility.

To answer the two questions I see: No, I am not a follower of Derrida, nor chomsky as MRI's show language appearing in different sections of the brain simply based on wide spectrum tests with gender. So, I am not saying that words have no meaning at all.

For me, words written are often the only way for me to communicate, as is true for many, from those who are post stroke, head trauma, shut-in syndrome, as well as some individuals in the austism spectrum. So words are important to me and I believe that while how words are emotionally or intellectually felt is different for different people, a bridge can be made between minds using words.

However, just because I make a word and want to apply it to others does not make it so. Even if my subgroup does that, particularly if it seperates in a negative sense, groups historically will not accept the word. I think for example, the reverting of the USSR to the identity of individual countries, to be Polish, not Soviet, to be German, not East German was strong enough to create a domino effect that overthew governments with armies with guns saying, "No you are a Soviet, part of the great Soviet republic" and they said, "No, I a Slovanian" even though for 50+ years, they had been told what they were to be.

I believe that creating a 'them', a negative arch-type of 'Neurotypical' is discrimination and a move away from a society of acceptance.

How can we hear the secret stories of people hiding their selves, and their diversity if we make assumptions about them, simply because of what they do to survive?

Elizabeth McClung said...

Stephanie: Your second and ending question is about how to deal with predjudice and also have a society without barriers but accessibility?

The answer was why I wrote this piece. We recognize that we are not the same, and that is okay, it does not make another better or lesser, but part of human diversity. And most important we recognize what is common between us, that by including all of those who are neuro diverse, and educating people that they are, indeed our allies, as they will likely either need accomodation due to aging, accident, or in the case of men, the loss of testosterone at male menopause and the effect on the brain - people they love, and family who are all needing what we need. And the sooner we make a society where that is not 'politically correct' but caring about individual people because it is a good thing to do. Part of being a community is including ALL in the community, and if that needs to have laws passed, lobby for them being passed.

Right now however, getting Austism groups and blog to link with post-stroke blogs, or Cerebral Palsy blogs, or bipolar blogs, and gender identity blogs is the step I am hoping for: to recognize each other as allies. If we stay only in one group and demand that others change, without challenging ourselves to change, and see how to accomodate those who WE can, then it is unreasonable. And I believe will fail.

So, we challenge ourselves in accepting that having internet friends across all aspects of the neuro diverse spectrum is good. That I want more friends who are neuro diverse so I can learn more about interesting people, see how they view the world, learn how to properly accomodate them, and they me.

That's the post, that's the first step I am hoping for.

Stephanie said...

Elizabeth McClung,

"I believe we are on the same side, as I want to move toward a society which is not impaired."

I believe we are as well.

" In the EU, when I worked at the University in the UK, accomodating neurodiversity was not only part of teaching, but it was the law - ... It is a model I hope will spread."

I hope so, too, and that the news of it spreads. I wasn't even aware that a successful model existed.

"So words are important to me and I believe that while how words are emotionally or intellectually felt is different for different people, a bridge can be made between minds using words."

I certainly agree. Success comes, in part, from the back and forth. You say what you mean, I say what I heard, you revise what you say so I can hear better. I think as a whole, there needs to be more of that. Word can only do so much; it takes more to actually communicate.

"I believe that creating a 'them', a negative arch-type of 'Neurotypical' is discrimination and a move away from a society of acceptance."

And you make a very valid point. I agree with you. And I'm very much against the us/them dichotomy in whatever form.

I'm just at a loss on how to communicate without using it at all. I modify it, as I did here, but I see what you're saying. It's not enough. But still at a loss. Something to think about.

Concerning the goals you've laid out, you have my support and encouragement and offer to help. I try to link to as many blogs as I can find, but it's a trickling process. For example, I found your blog very recently through The Goldfish's whos who post. In time, I will find other blogs through yours and on and on it goes. But I've noticed people that come to my blog for one thing--usually autism--resist visiting blogs unrelated to that one thing. It's sad. We all can be richer for stepping out of our respective boxes. Even better to break the boxes apart and not use them at all.

lilwatchergirl said...

This post has been included in this month's Disability Blog Carnival - see http://lilwatchergirl.blogspot.com/2011/02/participate.html. Thanks for a really interesting contribution!

And on a personal note, I don't feel excluded from the neurodiversity community, even though I'm 'only' dyspraxic. I'm an academic, which makes me elite in the neurodiverse world, so I may be missing your point entirely. But I don't feel that others get to define me, personally. But thanks for making me think more about the issue. (Damn. Now I have to think.)

Elizabeth McClung said...

lilwatchergirl: thanks, I don't know if I did submit it, but I was planning to and thank you for including it, particularly if I didn't, a gracious act of accomodation - thanks.

Oh, I had meant for it to be about how together, we can get workplace, universities, and the world to accomodate us, by making bridges and by pointing out that in a way, there is so much 'us' there isn't a them, we are just a community where all types of neurodiversity accomodated is a better community, which includes university education, arts and research for all those with neurodiverse viewpoints, to make a more interesting society.

I am sorry that point got lost, I will write another piece then.