A different view of "disability"

Back in the 90s, I taught Diversity to managers and always used this text because it's the best thing I've ever come across for demonstrating how disability is constructed by society. Although it's about physical disability, it applies equally to neurodiversity. 

Let us suppose that a thousand or more disabled people, all wheelchair-users, settled in their own village where they had full management and democratic rights. They make the goods that they sell in their shops with special aids, they work the machines that clean the street, run their own educational colleges, banks, post offices, and transport system of the village, and so on. In fact, for the villager, being in a wheelchair is like everyone else in their world of people that she or he meets in daily life. They see wheelchair-users on television and hear them on radio. Able-bodied people, however, are only rarely seen and little understood. The wheelchair-users design their own buildings to suit their physical situation. Soon it becomes standard practice to build doors to a height of 5 feet and ceiling or rooms to a height of 7 feet 4 inches. 

Let us say that a few able-bodied people settled in the village. Naturally, one of the first things they noticed was the heights of the doors and ceilings. They noticed this directly, by constantly knocking their heads on the door lintels. Soon all the able-bodied members of the village were also marked by the dark bruises they carried on their foreheads. Of course, they went to see the village doctors, who were, naturally, also wheelchair-users. Soon the wheelchair-user doctors, wheelchair-user psychiatrists, wheelchair-user social workers, etc., were involved in the problems of the able-bodied villagers. The doctors produced learned reports about the aches and pains of the able-bodied in society. They saw how the bruises and painful backs (from walking bent double so frequently) were caused by their physical condition. The wheelchair-user doctors analysed the problems and wrote their definitions. They said these able-bodied people suffered a 'loss or reduction of functional ability' which resulted in a handicap. This handicap caused a 'disadvantage or restriction of activity' which made them disabled in this society.

Soon special aids were designed by the wheelchair-user doctors and associated professions for the able-bodied disabled members of the village. All the able-bodied were given special toughened helmets (provided free by the village) to wear at all times. Special braces were designed which gave support while keeping the able-bodied wearer bent at a height similar to their fellow wheelchair-user villagers. Some doctors went so far as to suggest that there was no hope for these poor sufferers unless they too used wheelchairs, and one person even went so far as to suggest amputation to bring the able-bodied down to the right height. The able-bodied disabled caused many problems. When they sought jobs no one would employ them. Special experts had to be trained to understand these problems and new professions created for their care. When one able-bodied disabled person applied for a job as a television interviewer, a special medical examination had to be arranged to see whether he was fit for this work. In the end it was decided that be was not suitable. It was felt, the wheelchair-user doctor pointed out in the case file, that a television interviewer wearing a helmet all the time would not be acceptable. Since the cameras would only show the top of his head because the able-bodied were always bent double by the harness they had to wear, he would not be suitable for interviewing. It is well known, the wheelchair-user doctor wrote, how difficult it is to communicate with the able-bodied because it is not easy to see their facial expressions and meet eye-to-eye while they bent double

In time special provision had to be made in the village to provide a means of obtaining money for these able-bodied disabled to live. Voluntary societies were created to collect charity and many shops and pubs had an upturned helmet placed on the counters for customers to leave their small change. Painted on the helmets were the words "Help the able-bodied disabled". Sometimes a little plaster-cast model would stand in the corner of a shop - the figure bent double, in their characteristic pose, with a slotted box on the figure's back for small coins.

But one day, when the able-bodied were sitting together and discussing their problems they realised that they were never consulted by the wheelchair-users about this in the little society. In fact they realised that there may be solutions to their problems which had never occurred to the wheelchair users simply because they never looked at these in the same way as those who had them. It occurred to these able-bodied disabled people that perhaps the cause of their problems had a social solution - they suggested that the door and ceiling heights be changed! They formed a union to fight segregation. Of course some of the wheelchair-users thought the able-bodied disabled were failing to accept and adjust to their disabilities, and they had chips on their shoulders because they argued so strongly for social change and a change in attitudes by the wheelchair-users. The able-bodied disabled even argued that perhaps, just perhaps, their disabilities could be overcome (and disappear!) with changes in society. 

1975

by Vic Finkelstein

  • Maybe Norma could explain it to their parents by saying that they suspect their parents had been worried that Norma would never meet a boy who they would get on well with and that she hoped they would be happy for her.  Explaining how hard it is for atypical people to be themselves and maybe they could help Aspen and Ty get together in an acceptable, safe, way that didn't make them so vulnerable to institutional abuse.

  • Thank you for posting this and I've been thinking about it the past couple of days, and the post made by Catwoman below:

    I wonder what NT's would think if they lived in a world that wasn't noisy, where wearing headphones was the norm, that blaring out loud music from your house, car or garden was legally enforced as antisocial behaviour?

    So, what if most people had autistic brains, and what we think of as neurotypical was actually atypical? Perhaps there would be an organisation like NAS, called the National Atypical Society, and perhaps a post on their community website might be a bit like this :-

     "Hi, my name is Norma and I've just turned 18 and joined this community. All my life I have felt different. At school I got bad reports because I couldn't concentrate for very long and failed to see details and patterns that other children could identify easily. I wanted to play with other children and pretend to be a family, but they were all too busy lining up toys, enjoying the sensory feel of sand, or playing chess or video games. I now have a job in an office and I feel quite lonely there as everyone stays in their own cubicles with their headphones on all day. If I try to make conversation at lunchtime, they look at me strangely if I discuss the weather or ask about their family, and then they start a monologue about their interests, which are usually things I have no knowledge about so I can't contribute to the conversation.

    I have a sister called Aspen who is two years older than me and she has been kind to me. She told me about a local group for Atypical people, and although I haven't been formally diagnosed they welcomed me and I've been going for a couple of months. I haven't ever had a boyfriend, but I met a boy called Ty at this group and we get on really well. When we met he looked into my eyes, which I know is not socially acceptable, but it made me feel strangely good.

    Last weekend I met him at a park, just the two of us. He brought some wine and a small speaker which he connected to his phone to enable us to play music without headphones! I know it's bad, but we were really happy, drinking and singing along to the music - until a police drone flew overhead and took photos of us, and then sent us a text saying we had been given an anti social behaviour order! 

    I don't know what my parents are going to say, how do I explain it? "

  • you have two conditions that most people dont' really understand.

    Oh, I hear you. One of the things the managers I taught in diversity classes found difficult was that many of us fit into more than one 'protected characteristic' box (equality law). I pointed out that I was female, bisexual, disabled and of a minority religion. These days I can add age. 

    More than one disability is more than most folks can cope with, as well. I have friends with fibro and others with multiple serious conditions. The worst thing is simply working around the problems they cause complying with 'normal' (NT) life. And that was before I added autism to the mix.


  • Sorry my bad for not reading your OP fully enough.

    I agree about the lack of awareness and understanding of condition's like Lupus, I have fibromyalgia, something that not only have many people never heard of , but don't believe exists. The benefits people are just as bad, not only does fibromyalgia not have a test, its a diagnosis of exclusion not inclusion, but theres no real treatment. So many think how can you really be ill, if there no tests and no treatment, to be properly ill, to be allowed to be ill your illness must fit those criteria. Add autism on top of that then you're really just making a fuss and your in no mans land, you have two conditions that most people dont' really understand. Our understanding of illness needs to change, illness isn't always something you recover from in 6 weeks and a plaster cast, or a weeks worth of antibiotics and if they think its inconvienient, how do they imagine it feels for us! 

  • I hope Vic Finkelstein would be alright with this version of the story

    I'm sure he'd be delighted with all versions that reflect his concept. Slight smile

  • Yep - good stuff  

    suppose tho' that those able bodied had been living in the community all the time and not just moved in.

    Suppose these tall people were especially useful for cleaning the gutters and looking over hedges etc. so ended up in jobs like that but still had to live in the wheelchair world as if how they were living in it didn't matter

    The wheelchair users had found it too much hassle to change the door heights etc because the able bodied were too few in number and sparsely disassociated to meet the threshold for being noticed enough for the wheelchair users to actively do something about it.

    Suppose the tall people and the wheel-chair people discussed and rationalised all the problems.  Maybe even enough wheelchair users eventually agreed to the structural changes necessary to enable the changes in society that the tall people on their own were unable to bring about.

    I hope Vic Finkelstein would be alright with this version of the story

  • Finkelstein was writing in the 1970s, so this piece (which he later revised to reuse for a 80s/90s audience) was groundbreaking at the time. It's mentioned in many papers about disability awareness, including by the admirable Tom Shakespeare. Unfortunately, for too many people (still) it's a matter of breaking the ground to enable something to grow.

    You're dead on about the problem with hidden disabilities. The worst case I had to fight in the workplace was for someone whose diusability was both largely hidden (they stayed at home for flare ups) AND intermittant. HR was set up only to deal with either ailments one would recover from or disabilities that were constant or (worse) progressive. Neurodiversity seems to be as difficult as Lupus for many employers to get their heads around.

  • It is interesting, but my worry about this story, is that already there are to many people who think disability equals wheelchair use, it's not fair and its not right, its a NT/able bodied stereotype that dosen't see us "walking wounded" as disabled. I say this as a person with osteoarthritis, fibromyalgia as well as autism and learning difficulties, I'm sick of the shocked expression of 'but you can walk and you're intelligent' that so often greets me, like we've got to be wheelchair bound, dribbling and stupid to be disabled, in ther words someone who others can pity and talk over.

    I wonder what NT's would think if they lived in a world that wasn't noisy, where wearing headphones was the norm, that blaring out loud music from your house, car or garden was legally enforced as antisocial behaviour? How would they react if everytime they felt they needed help, they had a digital device thrust at them and told that as they like talking so much they can use this device and talk to anyone anywhere, instead of a thoughtful answer that was tailor made to them rather than the majority in this case ND's?

    The list is endless, but the task still worth doing, so well done Alexa

  • It's thought provoking and I would imagine, a good opener for framing discussions in the workplace, and in a society in which attitudes to disabled people and non-disabled people vary.

    I am concerned that society may be becoming less tolerant of people with disabilities, due in part to the toxic ASD/ADHD narrative in political and public circles.

    The intrinsic value of humanity itself, our capacity to live, feel and connect with others is not dependent on economic contribution, yet our value as human beings is not often considered in these cost cutting times. The most powerful in the world often have the most money (and arguably, the least concern for the disabled and marginalised). 

  • Agreed, it wouldn't work in all cases because it releies on the concept of a self-sustaining community with the same disability and no need for outsiders to provide help.

  • Very interesting! I once saw a video probably based on this story. It changes the perspective,  but not for every disability could that perspective shift work. For people with severe cognitive and intellectual disability it wouldn't work, as they wouldn't be able to even use a bathroom without assistance. 

  • Thank you for posting this, a very interesting point of view and thought experiment in conveying changing society rather than changing the person.