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.


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.