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)”.
“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.
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 thatThis 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.
represents individuals who provide programs and services for individuals who
have disabilities, in the British Columbia Post Secondary Education system.
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.”