Tag Archives: learning disability

Inspiration Porn – an autistic point of view

Autistic people, and disabled people as a whole are not here to inspire you. They do not live their lives so that it can be filmed, put to an uplifting sound track and posted on Facebook. Most of you should know this, and you might even be nodding along to this blog, but it’s amazing how many people fall in to the trap of re-posting what has become known as “Inspiration Porn”.  But what is Inspiration Porn?  And why is it an issue for disabled people?

First of all what is inspiration porn? From what I can find online Stella Young the comedian, journalist and disability rights activist was the first to use to term ”Inspiration Porn” back in 2012. It refers to stories where someone with a disability is called inspirational for doing normal, everyday things just because of their disability. Think of someone using a wheel chair being approached by a stranger in the street, and told they are an inspiration. Then imagine that same stranger takes a photo to tweet, or writes a post on Facebook about what an inspiration this disabled person is.

So why is this so bad? Well inspiration by its very definition means being inspired to do something, or to feel something. But mostly you would say you were inspired if you saw, read or heard something that then pushed you on to go and do something yourself. But the word inspiration in terms of inspiration porn is used in a very strange way. Think “Autistic person gets date to prom” what has that inspired anyone to do? Is it in terms of “Well if someone with autism can get a date why can’t I?” Just break it down and think for a second. What’s the inspiration here? Someone with a disability did something day-to-day. Not only is that a headline, but it’s going to go viral and become world news. If you’re non-disabled try and put yourself in that story. You wake up and go to the shops. When you get home from work that night you log on to twitter only to find out that someone noticed you out shopping, and was so inspired, so moved by watching you decide what flavour crisps you wanted that they just had to take a picture and tweet it out. In fact what you did was so fantastic that thousands of people re-tweeted it. Makes no sense right? Well run through the same story again only this time pretend you`re autistic, or you have one arm. It could be anything. Do you think you would be any less shocked or perplexed to see yourself all over twitter?

The bottom line here is that disabled people are just living their lives. Yes some things might be hard for them to do, and yes doing day-to-day stuff might feel like a big deal to some people. But that’s their life. They are not doing it to try and make other non-disabled people feel better about themselves. If you are disabled and you feel like you might never be able to do something, and then you see someone with the same disability as you doing it sure that might inspire you. But it would inspire you to do something, not just post about it online. The idea behind it seems to be that disabled people just sit in a room all day doing nothing. If they do anything outside of this it must be a huge deal, and worth taking time out of your day to admire. Disabled people are not here to act as inspiration, but what makes it even worse, in my eyes at least, is that people are not even inspired to do anything. It’s not as if the people who share these stories go out and do something – they just talk about it, post about it, and then forget about it. That is not on any level inspiration.

Also let’s think about how these stories and images tend to be played-out. More often than not it’s not even the disabled person who is given the headlines. It’s “Cheerleader asked boy with Downs Syndrome to prom” Or “Staff member helps man with autism in busy shop.” In other words “Girl asked boy out on date.” “Staff member does what they get paid to do.” But as soon as you bring disability in to it their acts are elevated to almost hero status. The girl did not ask any old boy to the prom, no she took it upon herself to ask the disabled boy. And that act should inspire you to …well I am not sure? And the staff member doing their job, nope, a hero because even though they are paid to deal with the public someone with autism is clearly outside of that right?

People share stories like this because they want to feel there is good in the world. Because they know how much bad stuff happens to disabled people and how hard life can sometimes be for everyone, disabled or not. But this is not the way to show how good the world can be. This is just showing people living their lives, or doing their jobs. It’s like saying “look at them, they`re disabled but they can still get out of bed, and live with themselves. Even like that. My life is not so bad. I should go to the gym tonight.”  Just try and think before you share something like this again. Think about what it is, and what the real point of it is. Think has it inspired you to do anything? And if so why? Because the truth is most, if not all, disabled people hate inspiration porn. We don’t want it, it gives us nothing, and yet it focuses on us. And all so someone else can feel happy for a few seconds when they hit share.

Stella Youngs TED talk: https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much?language=en

You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

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Autism and the Puzzle Piece ………..

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The puzzle piece has become synonymous with autism, and with autism awareness over the years.  A lot of people use it, but most likely many of them don’t think about what it means.  I have been thinking about what it means, and what it represents recently, and I have to say that after giving it a lot of thought and consideration, and weighing up many arguments for and against, I am not a fan.  I am not suggesting it is immediately deeply offensive in the way perhaps racist language would be, and I am certainly not saying that people who use it mean to be offensive, or even mean anything negative about autism.  There are many reasons why I dislike it as a symbol, and in this blog I will attempt to explain what they are. This isn’t meant to be calling anybody out, and people should not feel like it is criticising them if they have used the puzzle piece.  It is simply my view, as somebody with autism, which I am putting forward to make people think.

In 1963 the NAS needed a symbol to represent autism because it had only been officially recognised about twenty years earlier, and it wasn’t really known about at all.  They wanted to be certain their symbol wouldn’t be mistaken for anything else.  There are a lot of charities out there, and finding a symbol that catches the public’s imagination, but isn’t too similar to anything else is difficult.  In the end they settled on a puzzle piece, with the image of a crying child in the centre, created by a parent member Gerald Gasson, This has to be seen in the context of the times, when the majority of people with conditions such as autism may have been institutionalised, and there wasn’t a great deal of care, support or understanding for autistic people.  The charity Scope was still known as the Spastic Society, and terms such as Moron, Imbecile and Idiot were still recognised medical diagnoses.  Virtually all the coverage of disability, learning disability, or any difference would have been negative.  So as a collection of parents who had set up what was probably the first autism-specific organisation in the world, they weren’t exactly in the best position to make sure everything was politically correct, and anyway political correctness as we see it today didn’t exist in the sixties.  When talking about why they opted for the puzzle piece and crying child, in the late nineteen eighties, one of the founding members said:

“The puzzle piece is so effective because it tells us something about autism: our children are handicapped by a puzzling condition; this isolates them from normal human contact and therefore they do not ‘fit in’. The suggestion of a weeping child is a reminder that autistic people do indeed suffer from their handicap.”

This type of language may have been acceptable in those days, but nowadays the concept of somebody being `handicapped` or `suffering` from autism is outdated –  that part was symbolised by the crying child, so the concept of autistic people not quite fitting in to society was therefore represented by the puzzle piece.  But there are actually still a number of problems with this idea which I will highlight below. The first and most important thing to say is that as with any point I raise in my blogs, it is not just me saying it.  I did plenty of research in to what other autistic people and their families think of the puzzle piece, and these are some of the main concerns that were raised

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  • The first point that many autistic people raise is the way this symbol assumes that we are puzzles, to be decoded in some way, rather than just people.  It is impossible to ever truly understand another person, so in a way we are all puzzles.  It has been said many times that if people would just listen to what autistic people have to say, or read what they write, then understanding autism and the autistic brain would be much easier.  It seems as if you might as well use a puzzle piece to represent people from Japan because you don’t understand Japanese culture, whereas if you simply take some time to talk to, and listen to Japanese people, things will become clear.
  • Another point – this one actually raised by people who are neuro-typical – is that the concept of decoding the puzzle of autism really seems to be more representative of neuro-typical professionals than it is autistic people.  Autistic people simply live their lives – they are not trying to put a puzzle together.  It might seem like a strange distinction, but I actually think it is an important point.  It does feel more like a symbol that would be worn by people who do research in to autism rather than people who actually live with it.
  • Although the puzzle piece is often used either without thinking, or with good intentions, people often misunderstand it, and its meanings.  Part of this may be to do with not understanding its history, and part of it may be because they assume it represents one thing, without actually thinking about it any more deeply.  This may be why so many parents, and even autistic people use the symbol.  And really it does complicate the issue because although in its origins, and with what it represents today, it is a negative symbol, it is used in a positive way by so many people.

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This sometimes makes it difficult to keep in mind what is wrong about it.   The real issue is that it is not obvious at first glance what it`s supposed to represent; people who defend it say that the pieces represent the families and friends of people with autism, the colours can represent diversity, and overall it represents the mechanical and logical workings of an autistic persons mind.  Now personally – and I know I am not alone in this – I don’t think any of this is obvious at first glance.  In a way it kind of makes sense, but it doesn’t really because none of those things actually call for a puzzle piece.  But if you think about it for a while you can kind of make it make sense.  The problems with this is you shouldn’t have to think about it – it should be instantly understandable at first glance.  The fact that it leaves so much room for interpretation is no doubt part of the problem. *

  • The puzzle piece is a fairly child-like symbol, using primary colours and big jigsaw shapes   A lot of autistic people may like bright colours, and appreciate the symbol on this level, but in a way, because it is so simplistic it does give the impression of being aimed at children – which could be seen to be reinforcing the negative stereo-type that only children are affected by autism. And it was actually designed to represent children because at the time the National Autistic Society was called The Society for Autistic Children (until 1982)

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  • The concept that there is a piece missing from people with autism which separates them from the rest of society is incredibly problematic.  It could easily be seen to be implying that there is a template for how people should be – a template of normality that people should strive to reach – and that because autistic people don’t measure up to this template, they are not full, complete human beings.  The truth is that people are different in all kinds of ways.  Autistic people don’t have something missing from them; they might feel things differently or think differently, but this is just who they are, and is not because a piece of them is missing.  And in a way the symbol does give the impression that if this piece can be found, and slotted in to place, autistic people will finally be whole.

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It is also worth noting that although Autism Speaks didn’t create the original puzzle piece, they seem to be the organisation most associated with it nowadays.  The bulk of their time, money and resources are spent on puzzling out autism; trying to find cures, and researching the causes of autism.  I personally don’t support them, but if you do that`s your choice.  I think that for a while the puzzle piece might have changed to represent a more positive image of autism, but now I believe that because of how much this organisation have been using it, and how it has become synonymous with their campaign to cure autism, it has gone back to its original meaning – mainly that autistic people are somehow lacking.  The debate over Autism Speaks is something for another blog, and I know it seems unfair to let them have the monopoly on an image such as the puzzle piece. But I do find it strange when people I know who speak out against Autism Speaks are happy to use the symbol that this same organisation plasters all over everything it ever puts out.

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Now it would be easy to sit here and say stop using the puzzle piece – I don’t like it, and nor do many other autistic people – but that perhaps would be a little unrealistic.  It has become so ingrained within autism awareness, and campaigns for acceptance that it would be difficult for people to stop using it overnight.  In fact there is an entire industry that appears to have grown up around it: clothes, jewellery, tattoos, to name a few, all featuring the puzzle piece.  Yes, if most autistic people are opposed to the puzzle piece then it should be retired, but I wouldn’t expect this to happen overnight – it may ultimately take years. The National Autistic Society dropped the puzzle piece in 2002, probably because they realised people in the autistic community were not fans of it, for all the reasons stated above.  And maybe in time other organisations will drop it as well?  I suppose the question that I am asking is this – if the NAS created the puzzle piece and used it for so many years, but have now ultimately decided that it is not a symbol they want to continue with, why have other organisations picked it up and ran with it?  If they took the NAS lead in using the symbol in the first place perhaps they should also take their lead in moving forward, and finding a new, more positive symbol?

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But perhaps the most important thing you can do when reading this blog is just to think.  If you have not already been doing so then take a moment now to think about the puzzle piece.  How many times have you seen it in literature, on the internet, in videos, on TV and in books?  Think for a second about what it actually means to you.  Not definitions given to you by somebody else, but when you see this image, what do you think?  Some autistic people have said that they like to be described as a puzzle as they find it appropriate for them, but I was actually surprised by the amount of neuro-typical people who when they stopped for a second, and actually thought about how they would feel as grown men and women being described as a puzzle, an enigma, or something to actually be put back together, realised that they would hate it.

This blog isn’t intended to make anybody who has been using the puzzle piece image feel guilty by the way – it`s not a big deal – just have a think about whether you want to continue using it, or whether you want to use something different?  I read a comment on an old Facebook page a while ago that I think perhaps could be useful.  The person in question was saying that when they first saw the puzzle piece it made them think that autistic people were a piece of society that had been ignored for a long time, and that it was society that was incomplete because of its refusal to accept different groups of people, so that instead of being a puzzle themselves, autistic people were just parts of a larger puzzle – that being humanity in general.  If  the puzzle piece isn`t to be retired completely,  may be it is worth thinking about this, and deciding exactly what it is you are trying to say or represent when you do use  the puzzle piece as a symbol of autism – what is your message, and if that message were aimed at you, how would you feel?

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You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34253.html/ 

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Paddy-Joe Moran J

#justiceforLB

Here is a guest blog, written by my Mum, Jane, in support of #justiceforLB and the #107days campaign:

Hi, I`m Jane. I`ve never written a blog before, but felt compelled to do so when I learned of the tragic (and preventable!) death of Connor Sparrowhawk, otherwise known as LB (Laughing Boy) Connor`s needs were ignored in an ATU, where he should have been receiving care and support. Instead he was left alone in a bath – despite his epilepsy – where he had a seizure and drowned. I wrote this blog weeks ago, but never felt it was good enough to post – I mean how do you do justice to LB and his amazing family, who are fighting for justice for LB, and for the rights of all individuals with a learning disability?
Each day, when I read through Twitter, I am moved to tears by LB, his Mum Sara, and the terrible thing that has happened. It breaks my heart for two reasons; the first one is obvious – a young man died a preventable death. The second slightly more selfish – my own son is around the same age as LB, and he too has autism. And so each morning when I read the Tweets my my heart screams `it could have been my son` – if things had gone differently, if he had needed to go in to an ATU. My son doesn’t have epilepsy, but from what I have learned, from Winterbourne View for example, unsupervised baths are just one among many acts of negligence that can exist in these places.
Above is an example of not just bad, but horrendous practise – LB was let down in the most unimaginable way. But what about good practise? What does that look like? What should that look like? I believe that the person in question should be at the centre of all decisions made: what do they need? What do they want? What do they like? And they should be listened to, and heard. If the individual is unable to articulate their needs then someone should advocate for them – someone who knows the person well, and above all cares for them, and puts their needs and wants at the centre of all decisions that are made. It sounds obvious, and I am stunned and amazed that in 2014 this still isn’t the starting point for all decisions made with/on behalf of people who have a learning disability. This got me thinking about my past experiences in the work place. I am going back quite a long time, and naively I thought things would be better now, but when I read about Connor Sparrowhawk (LB) and Steven Neary, Stephen, and Nico, I realise that in some places things have actually got worse.
I have worked in care homes for the elderly (another neglected section of society), and nursing homes, as a care assistant. I also worked for several years as a Residential Social Worker, with adults with learning disabilities – who had been resettled from long-stay institutions in to their own homes in the community. Most of these individuals had been institutionalised at a young age; many because they had epilepsy, Down`s Syndrome, autism, and various learning disabilities. Some of the women had been put away for `moral deprivation` – because they`d had a child out of wedlock.
I saw lots of good practise during this time; individuals being asked about what they wanted to do, and being supported and enabled to live in the community as independently as possible. And most of the care staff or RSWs were kind and caring people who had genuine feelings for the individuals they were assigned to support. As far as I am aware there was no deliberate cruelty, as there was at Winterbourne View, and no dangerous neglect as there was in LB`s situation, and yet I was often still very distressed, and angry at incidents that I witnessed during my time as a Residential Social Worker. Below are a few examples that brought me in to conflict with other staff members (and also caused me to be bullied in the work place when I spoke up) of when care that was a million times better than that which LB received, was still completely unacceptable
• I arrived at the home of two very intelligent, and capable ladies whom I supported, who had been resettled from a long-stay institution after about thirty years, in to their own home in the community. The ladies were still in bed, and the member of staff who had done the `sleep-in` answered the door. On entering the lounge I noticed straight away that all of the furniture had been rearranged. I said “Oh, have A and D had a change around?” and she replied “Oh no, I was bored last night when they were in bed so I decided to rearrange the furniture.”
I was stunned – yes we had to be there twenty four hours a day to support the ladies to live as independently as possible, but it was their home! I tried to explain this to her by saying “If I spend the night at your house and decide to rearrange your furniture while you sleep, is that ok?” But she just didn’t get it.
Another staff member (her friend) would take money to buy shopping for the ladies closer to her own home because it was cheaper – she didn’t even take the ladies along, or ask them what they wanted! She decided which meals they would have, and took the money to shop for them at the supermarket she used for her own shopping because it was cheaper. She gave no thought whatsoever to the damage this could do to the two ladies, who had worked so hard to develop decision-making, shopping and budgeting skills. We were supposed to be enabling these ladies, not babying them, but these members of staff (although they had genuine affection for the ladies) had very little respect for them as adults. I think they saw these two women as `sweet` and `cute` but in no way as capable, or even as individuals – it was always `A and D` with no room for autonomy. When I spoke up I was targeted by these women, and their friend (who was the senior RSW – my line manager) who constantly tried to undermine me, which was very unprofessional, and could potentially have put the ladies we were supporting at risk.
• I also supported three young women on a different network, who had very severe learning disabilities, and needed far more support that the two ladies I mentioned above. They lived in a house next door to clients who were supported by the same network, but needed much less support. Each morning when I arrived at the house the staff supporting the individuals next door would be sitting around the kitchen table of the young ladies I was supporting, having breakfast, smoking and chatting with the staff I was about to take over from. Several times one of the young ladies walked in to her kitchen, and then left as there was nowhere for her to sit. Again I was ostracised and bullied because I spoke up against this – the staff weren’t deliberately cruel, or even neglectful in an intentional way, they just couldn’t see that this was the young women’s home – not an institution, not a hospital – but a house where actual individuals lived. They treated the young women`s kitchen as a staff room – meeting up with colleagues, and making themselves at home. Again, they just couldn’t see what they were doing wrong when I pointed it out to them. I tried to make them see that they were being disrespectful to the women, but they genuinely couldn’t see what they were doing wrong – their attitude was `we`ve always done it this way` and `who are you to come in and tell us how to do our job? ` Their resistance to any change in practise was frightening!
The above are just a few examples of many incidents I witnessed in an environment that was supposed to be promoting good practise. The individuals with learning disabilities were cared for, and had many of their needs met, but even the staff with the best of intentions towards them still weren’t able to see these individuals as equal to people who don’t have a learning disability. There was no deliberate cruelty, no intentional abuse or ridiculing; none of the things we witnessed at Winterbourne View. Of course the treatment of the people in the examples I gave was a world away from what they had been used to in the long-stay institutions – living on wards miles from anywhere, and having to share clothes, and even false teeth in some cases! And of course the examples I give don’t even begin to compare with the horrific neglect that LB encountered. I am not trying to compare. I am just saying that when it comes to individuals who have a learning disability, what is often thought of as good practise, isn’t good practise at all. It might be an improvement on previous practise, and in some cases it might be a vast improvement, but that doesn’t make it good. Until people with learning disabilities are given the same concern, care, autonomy and rights as people who don’t have a learning disability, then it should never be considered as good practise. People with learning disabilities should not be expected to be grateful because their basic needs are being met; food, shelter etc. They have a right to have all their needs met; to make choices and decisions about their own lives, their own health, their own relationships, their own bodies – even if those around them don’t approve of their choices – they have a right to make their own mistakes
Will we ever see good practise running consistently throughout the care sector? Answers on a postcard please – and preferably one that LB designed, to raise much needed funds for his families legal bills.

You can learn about the individuals named above through the following links on Twitter:
https://twitter.com/JusticeforLB
https://twitter.com/MarkNeary1
https://twitter.com/LSammas1995
https://twitter.com/justicefornico