About me, without me & how people respond to legitimate questions

12 02 2015

I was interested in attending a conference being held in Glasgow by an organisation called Autistic Intelligence. They claim to be “a loosely affiliated group of worldwide experts in aspects of autism, a consultancy.” Comprised of writers, educators, therapists, researchers, and campaigners who all claim to have personal experience of autism in one way or another. The first person featured in their “About Us” section is none other than Professor Tony Attwood, a world renowned researcher in Aspergers. So far so good, right?

Well as an autistic person I was a little disgruntled at the price of their Glasgow conference for the unwaged, the low waged and autistic people. The sold out early bird ticket price was £60 rising to £70, an awful lot if you have no or little income. In my mind this excludes many people on the spectrum who do not have wealthy backgrounds or healthy incomes. So I emailed the organisation using their website contact form. It wasn’t my most articulate piece of writing but it got my message across in a particularly autistic style.

Personal information has been started out but nothing has been edited or removed from the following communication.

Hello Admin
You have a new contact request:

I was reading with interest about the upcoming conference in Glasgow but am disappointed to discover that even the now sold out “early bird” tickets for unwaged autistic people is out with our ability to pay. How can you expect autistic people to participate in wider society when a conference set up specifically to talk about us excludes us unless we are from wealthy backgrounds? Given the low employment rate of autistic people, there’s a far higher likelihood that they will belong to the unwaged/low waged category and given that £60 is only £12 less than the weekly income on JSA, the conference is an impossibility for up to 85% of the autistic community. Is this something an organisation set up on the backs of autistic people intended? Is exclusion from discussions and presentations about us the way forward? Added to this is the fact that parents tickets are even more expensive and there is no mention of carers. I could not afford to pay for one ticket let alone a necessary second to bring my carer with me. I am extremely disappointed but not surprised by this exclusion of autistic people.
From: ********@student.***.ac.uk – **********
Subject: Criticism
Senders IP: **.***.***.**

I was perhaps slightly blunt in my email but I’m getting more than irritated with the ‘all about me without me’ rhetoric of so many of these so called autism organisations.

The organisational contact responded within the hour. I have starred out information that I feel is inappropriate to share, although the author at the time obviously did not.

The cost price of this conference – venue, food and drink for attendees, speaker fees and transport and accommodation, handouts, and online-ticket-selling costs – is 70, provided 100 people attend, and there’s no certainty of that. I also give extra 20% discounts to anyone with financial problems.

Meanwhile I don’t get paid for running the whole show, choosing venues and speakers, answering the phone, doing publicity, writing invoices, answering emails like this, most of which are insulting as to my motives.

I am ** *********. I’ve just had a ***** *******, the first in ten years, as I was going up the stairs to bed. I fell backwards and fractured a rib, and did some major damage to the soft tissue in my chest. I was out cold for 3 hours, and on my own. I came out of hospital on Saturday. It will take me 2 months to recover, but I still have to be there in Glasgow to do registrations, and I still have to fund any shortfall on the costs from my own savings if we don’t break even.

If you have a problem, phone for clarifications before jumping to conclusions, please.

B****** J*****

I haven’t stopped laughing at this response. Not at the poor author’s misfortune, they obviously have had a very difficult time of it lately, but at how out of touch it seems to be with “intelligent” autistic people and their predicament: assuming verbal communication or desire to use a telephone; being excluded from discussions and conferences about their very existence due to financial barriers; and the attitudes of ‘professionals’ and many parents of what autistic participation is possible or even permitted.

Come to your own conclusions as to what to take away from this communication. I sure did.

My aim is to ensure autistic communication is heard, respected and valued. I want that our experiences are listened to and built upon when offering services or developing conferences about us. I’ll let you decide whether or not this organisation’s response does any of that.


But you look so normal

25 06 2014

There are probably hundreds of blogs with that title on the net today. It’s something many people with an unseen disability have been told. My response is usually ‘I am normal’ , even although my disability is one that highlights how abnormal I am, or how abnormal I should be just to appease society.

It’s no secret that I have autism. The shell looks fine if a little rotund, the inner workings are somewhat wonkily wired. I’ve often joked that to be a convincing autistic I need to rock back and forth and talk incessantly about trains or numbers. People would be more comfortable with me fitting that stereotype, one where I can garner sympathy, but I don’t. I can articulate rather well, I can even successfully take part in small talk and social chat. I have thousands of acquaintances. Socially I do ok. I am a strong independent person, even if I can’t cook. You will never see what’s going on under the surface to get me to that level of interaction. I look just like you. Normal.

You, who can socialise instinctively. Normal. You, who knows the cues to talk or shut up. Normal. You, who pick up on more subtle forms of communication such as body language or facial expression. Normal. You , who is unlikely to struggle with sensory overload or processing basic information. Normal. You, who probably doesn’t become catatonic at the sound of sirens. (There you go Lex Luther, there’s my weakness) Normal.

But you struggle to read me in the same way I struggle to read you and because you are in the majority, it’s expected I will change to fit in with you. In fact, autism is a developmental disability, I am expected to ‘develop’ my skills and understanding to become normal. Some people make a fortune out of trying to get people like me to develop normal skills so I can pretend I am normal to be like you.

Well you know what? I’m really fucking successful at doing normal. Too successful. I have to convince people of my disability. I have to persistently justify my struggles (or symptoms if you prefer such language), even to people who have known me all my life. They say, “but you’re just you, I don’t care what they label you, you’re still the same to me” and in this statement those who claim to accept me refuse to learn about how my brain works, what my struggles are, or how they could help me overcome them. They silence me with their questioning, ‘what is normal anyway?’ Immediately followed by telling me I should try to understand that I’m different and I can’t expect normal people to understand. If this is acceptance then I don’t get it.

And if I struggle to justify how my brain works to those who know me best, what chance have I got of convincing those who don’t know me that I need help and support or understanding? If my disability was visible, if I hadn’t learned not to stim or hide being ‘symptomatic’ (there I go again with that medical language) I don’t think I’d have to justify myself over and over again. I’m definitely not saying those with visible disabilities don’t have problems with justification, hell I’ve read about ATOS and the WCA, but if someone can see the problem they’re more likely to try and understand it. It’s easier to try to imagine mobility issues than it is an entirely different way of processing and thinking. Physical disability is visibly justified, it makes sense to them that there could be difficulties or support needs. When you look just like them and can pretend on the whole to act just like them, when you finally get the courage to say ‘I need help’, you’re met with ‘prove it’ and if I try to prove it, I’m made to feel like a fraud or a con-artist. Only then to be told, ‘prove it more’.

I shouldn’t be made to feel like I’m faking it just because someone else struggles or refuses to understand. Why should I have to fit in with your world? Why can’t you try to fit in with mine? I do look normal. I am normal. Like any normal person I have struggles and sometimes these require me to ask for help. How I appear on the outside shouldn’t define what I need or get.

I don’t suffer from autism. You do.

2 04 2012

I don’t suffer from autism, I suffer from people’s unwillingness to accept difference in the human race. I don’t suffer autism, You do.

So today is World Autism Awareness Day and of course the media feel the need to recognise it in its own inimitable way. The Guardian for example have pictures of kids at a SEN school with descriptions of typical autistic traits underneath. Is it in pictures because we cannot read? Does it simplify autism for us or does it simplify the whole thing for you? Only just a bit* (*majorly) patronising, but as someone on twitter said, “it raises awareness for the poor souls”. This is the part of the problem, it is assumed people with autism are poor souls for being different to the neurotypical population. It also often assumed by the media, autistic people are all the same with the same behaviours and the same traits, it ignores the fact there is a spectrum or any individuality within that spectrum, just the same as neurotypical humans. The media perpetuates this ‘poor soul’ myth by talking of our “suffering a condition” that is in fact a neurodevelopmental difference. Medically they call it a disorder because it does not fit into the neurotypical view of normality.  What is normal anyway?

Much of the suffering of people with autism arises by being forced to conform to the alleged norms of a neurotypical society. Because our “disability” isn’t one that can be easily seen, it doesn’t have the same social sympathy factor as someone with no legs in a wheelchair. Indeed often most sympathy I see is directed towards long-suffering parents. And therein lies the reality of “suffering autism”. The parents and carers, the neurotypicals, they have to suffer autism. The parental desperation for the autistic person to be “normal” and to fit into or embrace their way of life causes the suffering. Asking or forcing people who have their own way of doing things to ignore their natural compulsion and live to your unnatural standards is what causes the problems. Shoehorning any human being into a box that not designed for them is problematic, regardless of the label you wish to apply to them. Leave an autistic person to live life as they wish, in the manner they wish and they’re happy as can be. No meltdowns. The parents and carers aren’t quite so happy leaving them be though are they? We send autistic people to behavioural therapy or crave treatment to make them fit in with neurotypical life. There is no recovery. Treatment means behave more like a neurotypical person. It denies the autistic person the right to be just who they are. We are telling people with autism they are wrong the way nature intended them and to conform to the neurotypical ideal.

Of course life doesn’t allow for people to live however they wish. How dare we even contemplate letting someone live a life that is so inherently different to that which is understood by neurotypicals. We all must conform. We must all be the same; same clothes, same hairdo, same thought pattern, same tv, same car, same semi-detached house.

Could it be that the neurotypical community have it wrong? Perhaps the idea of rejecting social conformity needs to be embraced among the neurotypical community. In fact it seems to me this is where the biggest problem lies. Neurotypicals are so desperate everyone must conform to their ideals, that they can’t see the damage they are doing to themselves and society as a whole by shunning their own individuality.

I don’t want to conform. Long before I?d even heard of autism, I didn’t want to be like everyone else. I knew I was different, they knew I was different, there was a happy status quo, they didn’t want me being like them, I had absolutely no desire to be like them. Neurotypicals live in a cluttered complex world. Subtle nuance replaces upfront. Body language may reveal a truth that their words leave behind. Maybe if more neurotypicals tried to live in an autistic world, there would be a lot less bullshit. Imagine it; no spin, only common sense, honesty? you can’t imagine it though can you? You don’t want to try to imagine living in an autistic world and instead it is expected to force an autistic person to live in a neurotypical world. A world that is alien to us. A world that is confusing, if only because you make it needlessly so.

Is this my utopian ideal? Yeah of course it is. My opinion, my utopia, but it is no less utopian than the expectations of the neurotypical community that we can and will, or even want to, just fit in with their way of life. It is assumed  that we all want to but cannot. Have you even considered that some autistic people just don’t want to live and be like you? Could it be so?


Rant longer than 140 characters

26 08 2011

I just read a very emotional and touching blog. I won’t link to it as my rant isn’t supportive or kind in the end.

In this blog the writer tells a story of a homeless man being treated badly in coldest winter. He helps this man, gives him a gift voucher for food etc. He related to the likelihood of the homeless man having some kind of developmental disability like all 3 of his kids.

You’d be close to tears. It was expertly written, descriptive, emotive and something many parents will related to whether or not their children have a disability. The fear of who will look after them when the parents have died remains well into the child’s adulthood.

Had I left it at reading the blog, I’d have finished my evening with a warm and fuzzy feeling. There are still kind people in the world. All’s well with humanity etc. Blah blah

Then I read the comments.

Comment after comment where people were donating money to the blogger.

Hang on a minute… Giving money to the blogger???

The blogger gave away $25 yet people in the comments donated well over $50 in return.

So, does this mean that altruism pays and not in the feel good sense?

A quick search of the site, I’m on my phone so can’t see whole thing at once, reveals there is a donate button. WTF?

This money donated doesn’t go to charity, it goes into the pocket of the blogger.

Don’t get me wrong, everyone’s struggling at the moment and every little bit helps but surely if someone felt obliged to help, they too would donate to a good and needy cause such as a homeless charity/shelter or a food bank or even pick a random homeless person off the street and give them $20.

By my calculations, reading the blog, the writer can afford to run a car and have Internet access in his home. I’m not saying he’s not struggling or that he’s rich but he already has far more than the homeless man he helped and far more than the millions of homeless people worldwide.

It made me doubt his kindness. It made me doubt the sanity of those leaving comments, who would rather donate to a man who made a kind act, than to the truly needy causes he supported with his kindness.

I am a cynical bastard but I could write tragi-blogs and put up a donate link. I could play on people’s emotions and financial kindness in a time of economic turmoil. I could make a lot of money from a bunch of vulnerable strangers who feel the connection between their family situation and that of the blogger is enough to warrant giving me money to help me in my time of difficulty.

But I never would and should a stranger try to give me money, I would never accept it. I would suggest more worthy causes than me for their cash.

I’m now left with a cold feeling about what started out a beautiful story. My take on it now: Skint man helps autistic homeless man because skint man worries his kids could end up like that. Skint man cries like a baby and blogs about it. Conveniently there’s a donate button on the site. Skint man isn’t quite so skint anymore. His website gets lots of traffic, he gets lots of money and autistic homeless man is still autistic and homeless.

I hope I’m wrong but I smell a rat. I could harp on about my financial and personal woes with disability in the hope I could con a few people out of a few bob but it wouldn’t help anyone else out and all I’d learn was that gullible and vulnerable people fall easily for the written word.

I’m now left feeling a bit disgusted. At myself for thinking this way, but mostly at a blogger who felt he could cash in on what may or may not be a true story.

Retard, Retard, Retard…

23 06 2011

Retard – It’s a word that people feel awkward saying. Often referred to as the “R” word, I feel this detracts from the importance of the discussion. I’m not afraid to say or write the word retard because I’m not afraid to discuss it. I’m hoping others feel the same too.

Nicky Clark (@dontplaymepayme on twitter) has started a campaign called People not Punchlines, aiming to remove hate speech and associated terminology often used against people with disabilities, and have disabled hate speech included in current legislation that protects other minority groups.

In the main, I support the campaign’s aims but have been fascinated by the responses to her campaign. In particular from those who responded negatively to her request. In her Guardian, Comment is Free post, “It’s time to cut ‘retard’ from use” there are six+ pages of readers comments arguing over the right to use or the right to stop people from using the word retard.

Commenters, missing the point completely, insist that campaigners are demanding the use of the verb retard (as in to hold back or slow down) is stopped and as such this restricts their freedom of speech.  But rarely does the word retard get used as a common verb in modern discourse these days, and I can’t see why people should have to stop using the verb, in a contextually correct manner.

Etymologically, the word retard has origins in many different languages from Anglo-Norman/French (retarder) to Latin (retardare) to Spanish (retardar). It essentially means the same thing: to slow. In modern language it is used most commonly in engineering and chemistry as a process; retardation.

This is not insulting and such use should not be stopped. This was the main ‘sensible’ argument put forward in the Guardian comments for keeping the word retard in popular circulation. I don’t believe this is what the People not Punchlines campaign is asking for. Correct me if I’m wrong but there is nothing insulting about discussing e.g. chemical retardation.

However, the current problem doesn’t lie within the chemistry labs of universities or the cad files of engineers. The issue resides when it is used as an adjective or noun. Initially a medical term from the 18th Century, it is rarely now used in medical settings within the UK. That is not to say it is never used, just that more suitably descriptive terms have been employed.

Retard used as a derogatory term, became prevalent in 1960s United States but in recent years it’s become more common in the UK and doesn’t always refer to the intellectual capacity of the recipient. It’s the derogatory use of ‘retard’ that upsets people and equally it’s the derogatory use of retard that people seem to love.

The use of word retard is, as a descriptor or a thing, not a pleasant term and this is reflected in its use as an insult.

And its a damn effective insult too. The derision is clear to anyone within earshot.

There is no mistaking the intention of using retard as an insult. “You’re retarded” isnt suggesting a slow chemical bonding process, it’s designed to liken the recipient to someone with a learning or developmental disability,  more specifically mental retardation, suggesting a low IQ.

But its more complicated than just that.

“Those shoes are retarded” for example doesn’t refer to the intellectual capacity of the footwear. It is highlighting that the shoes are somehow unacceptable, pointless or worthless. By comparing shoes, or anything else negatively with mental retardation is in essence saying its bad and saying mental retardation is bad.

And I don’t personally believe any individual has the right to suggest that a disability or a label based on an IQ score, high or low, is a bad thing. Nor is any other kind of intellectual or developmental difference bad, be that disability or quirk.

Using the likeness of intellectual or developmental disability as an insult directed at a non-disabled person or their footwear is wrong and therein lies the crux of the problem. There is nothing necessarily bad about having any kind of disability and it shouldnt form the basis of an insult, by perpetuating the use of retard and other derogatory terms such as “mong” or “spaz”  you are saying it is wrong and bad and unacceptable to have a disability.

What kind of society is it that celebrates derogatory terminology deriving from a negative attitude towards a minority? What kind of people feel the need to defend using derogatory language, regardless of who it hurts in the process? (And I should add those most hurt will rarely be the non-disabled recipient!)

There have been claims from within the disability community to reclaim the word retard in the same way some black activists reclaimed the word nigger, but this seems to disregard the historical hurt the term causes. The same can be said of nigger too. Many black people continue to oppose the use of the term nigger due to its historic and current negative connotations. Why should people with a learning disability accept the use of retard as an insult, implying it being a bad or undesirable thing?

It is noted that those most vocal and visible in calling for reclaiming the word retard, are not themselves living with a learning or developmental disability. Not intending to drive a wedge between people with different disabilities, as everyone has their struggle, but the power of the word retard used against someone with a mobility issue but no cognitive or intellectual impediment has far less impact than if used against someone who has, for example, Downs Syndrome or Autism.

Ask a disabled person what the most offensive disability related term is, they will say retard. Ask someone with a disability who is hurt most by using the term retard, those with learning disabilities come out top.

Now there will always be those who use words like retard or nigger without conscience and they are likely to be people who will never change their minds on language or offensive terminology. I know of people who revel in being as offensive as possible in the name of humour or shock value. The threat of illegality is highly unlikely to bother such a person.

The people, campaigns such as People not Punchlines need to approach, are those who have some degree of conscience. It’s not political correctness gone mad, its basic respect and all too often respect is forgotten about, the more popular a word becomes in the modern lexicon.

Children need to understand why such terminology is considered offensive, not just to be told it is and that’s that. Adults need to understand too. Children will be the proponents of change in language for the older generations. This happened with the term “Paki” and while it is still widely used in a derogatory capacity, everyone knows it’s considered wrong. It was taught in schools that Paki was not an acceptable term and in many cases this filtered through to the home. I remember my grandparents being reprimanded by my younger cousin for using the term and they never used it again from that moment on. That doesn’t stop it being used as a derogatory term and it doesn’t stop it being an undesirable term but those using it, in general, are aware of the social faux pas before uttering it and that’s a start.

The biggest problem with widespread use and acceptance of use of derogatory terms, is that the more common the usage is, the less shocking it becomes. The less shocking it becomes to the general public, the less they understand why its derogatory in the first place.

Rather than policing people and demanding the language is considered hate speech in statutory legislation, which only serves to irritate, movements need to teach people why such language is hurtful and unacceptable.

Learning disability is still a taboo. People fear difference and with learning and developmental disability, it’s something talked about in whispers, it’s pointing across the street, it’s misrepresented and misunderstood. Until this is tackled, terms like retard will continue to be used in a socially acceptable way.