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Un-Reality TV: Representation Matters

December 4, 2018

When I was 15 years old I decided to do a talk on my condition of Epilepsy for my English Language GCSE presentation to my class; I had been diagnosed with the condition just as I turned 12.  I rehearsed the talk in front of my English Teacher and had a seizure midway through.  I was then prevented from actually giving my presentation and given an ‘A’ grade.  As a result neither my experiences nor the information I could impart were ever given.

At the time I felt it vitally important this information be given to my peers because not once in my entire school life was it ever mentioned, discussed or alluded to.  I felt like a grubby secret, like there was something ‘wrong’ with me and I was being judged and found wanting.  I never spoke of how I felt because I did not feel there was anyone I could speak to.  I had been effectively silenced to the point I could not tell my family.

I had a seizure during a PE (Phys. Ed.) lesson with my entire year of girls at around age 14.  My type of seizure was known as ‘grand mal’ at that time (before the internet and the invention of the wheel) and involved full unconsciousness, uncontrollable shaking and often drooling.  I was lucky in that I never lost control of my bladder, but this can happen.  I found it utterly humiliating and traumatising, and as a result squished my emotions about it very far down inside me.

Everyone knew about my condition but no-one said anything, and I did not know anyone who had seizures of any type.  The only time I saw it on TV was in a 1985 episode of US sitcom Diff’rent Strokes when Arnold and Sam saw a street performer they befriended have a seizure of the same type as mine and were making horrible jokes about it.  It was resolved when their housekeeper Pearl shared her experiences of living with the condition and they developed empathy for her and by extension, others.  I cried for a long time after that episode.  It made me feel horrible and scared of what might be said behind my back.  It did not help me at all.  No-one spoke about my condition so how could people be stopped from making cruel jokes if they were?  I did not know if they were or weren’t.  The silence made me assume they were.

Recently, the BBC TV show Strictly Come Dancing showcased the Candoco dance troupe which is made up of able- and non-able-bodied dancers, performing Life on Mars with the Strictly professionals.  The backstage piece on sister show It Takes Two explained beautifully how the fact there were non-able-bodied dancers in the group had led to creation of new interesting moves and a fuller, more varied performance.  The variety of body types led to an improved choreography with greater context and content.

Yet still there is very little in real life interaction between able-bodied and disabled people, and the term ‘disabled’ is problematic in itself.  We are not disabled in ourselves, we are disabled by the lack of accessibility within social settings and in our homes, schools, colleges, restaurants, cafes etc.  This is short-sighted as every single one of us could become temporarily or permanently disabled at any time.  It is not too much to ask that accessibility should be at the forefront of any new building or business, for example.  In the long-term, so much more money would be saved and communities would not be broken up when people’s bodies or minds never or no longer fit into the boxes allotted them.

Integration into schools is a wonderful idea, but it is not practical for many of the buildings in which schools are housed, and without education on the various conditions that students may have, there will be bullying and exclusion.  Schools are overburdened with tasks at the moment and it is unlikely they will be in a position to educate and inform in the near future.

Furthermore, “disability” is used to describe conditions, whereas it is symptoms of conditions which cause problems.  A myriad of conditions may have similar symptoms, and people with the same diagnosis will have different presentations of their conditions in their lives.

So, what to do?  I have a few ideas:

  • Stop calling every person who appears on TV who does not match the two-arms/two-legs able-bodied image of ‘normality’ inspirational simply because they can do something to any standard, let alone a high one. Lauren Steadman, for one example, is a Strictly Come Dancing contestant who has only one arm, with the other ending at her elbow.  She is inspirational but not because she is disabled, because she is a fantastic athlete who has become a gifted and beautiful dancer.
  • Assume that no-one is normal. There is no normal, and if we took averages of eye, hair colour etc. of the entire country and worked out what the average person would be like, no-one would fit that average.
  • Don’t be scared of someone whose body presents differently to yours. It’s a shell, the person is on the inside.
  • Don’t talk over, around or ignore a person with disabilities. I know of people in wheelchairs who have been treated as furniture, simply moved out of the way of a shelf in a supermarket for example, without being asked if they would mind moving out of the way or being allowed the agency to move themselves.  Wheelchair users are not shopping trolleys!
  • Realise that the reason representation may not happen in real life is because real life is not adapted to bodies or minds which do not fit the idealised norm.
  • Understand that representation matters, and be active in encouraging it. Notice what is, and more importantly isn’t, around you. If you are involved in an organisation which is offered some sort of training, education or method of understanding a disabling condition, do all you can to facilitate it!

These are just a few ideas; I’ve recently become my local Labour Party ward’s Disability Officer to try and ensure disability is at the forefront of policy and that constituents with disabilities feel represented and able to be a part of the Party.  I am making the post fit my abilities and timetable.  I am more than capable, I just need to adjust a few matters to make it fit me.  It’s what anyone in any job will do, and the fact I have disabilities just means those are factors I must take into account, in the same way you may take into account the order in which you prefer to do tasks and prioritise accordingly.

No More SpoonsDisabled does not mean unable, incapable, or not able.  It means adjustment may be required to be able.

We all have different levels of ability whether considered a diagnosable condition or not.  Representation matters in real life, and if you don’t see representation around you, start questioning why.  It’s everyone’s responsibility, and that includes you.

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