Pain, disability and fear…

Comments and news stories on disabled bullying are frequent in the press – just search and see (here’s one from yesterday). From 2003 it has even been a hate crime, the CPS guidance acknowledging how such bullying can be disregarded. This, though, is just the tip of an iceberg that ranges from the extreme, horrifying accounts in Katharine Quarmby‘s Scapegoat to a constant, everyday grind of low-level contempt.

The problem is that whilst, like many in a similar position, I do not like to be termed ‘vulnerable’, the fact is I am. I constantly have to adapt to my pain; I have to be continually very conscious of when my arm could uncontrollably jerk, knock or spill something or tap someone. I often have to have it in a sling to take the pressure off my neck and shoulder – which is awkward in itself. Because I am in pain and because I am concerned about the lack of limb control (never mind about coping with the occasional bout of depression) any non-friendly social encounter becomes something to fear.

Yep, fear. Any inch of threatening behaviour gets me twitchy, wanting to run. Loom over me, and you make me scared; you walk into my house without being asked and I am terrified; step into my personal space and you might as well have hit me given the surge of pain that I experience from tensing up with concern.

It might seem strange to admit to living in fear, but it is something I have to face up to and acknowledge.  Sure, friends and relatives are fine; close acquaintances know how I am. But I have found others use aggressive behaviour and uncaring approaches apparently because they know I cannot respond or deal with it. I am overcharged, lied to, disregarded, knocked about apparently just because some know I cannot do anything about it.

It may sound farfetched, but imagine: you are walking down a path with some friends and you see someone walking towards you in a sling. His face looks pained, he may not be walking fast. What do you do? Pull over so he has a safe passage or do you force him off the path by barging forward, threatening to knock into him, knock him off the path, smash into his obviously damaged limb? Believe it or not, the latter is quite common in some groups – and it is nothing to do with economic status, either.

Try another one. You are in a workgroup and need to get together to form teams, make decisions about and co-ordinate what you are going to go. A disabled person has asked (repeatedly) to have them organised so s/he can fit them into his schedule (pain, disability, carer – scheduling is vital in caring for many impairments). How do you respond? Do you listen, or do you sideline them? The latter is more common than you might think, those brushing the disabled person aside doing so apparently deliberately, out of spite or from an attitude of contempt towards a ‘lesser person’.

What about carer’s/note-takers? I cannot take useful notes in lectures or meetings because I cannot write legibly or long enough. Even typing or sitting in the same place for a while requires constant halts, breaks, changes in stance. Dictation software is also pointless in a such a situation, requiring amendments for specialised words or even common words – and, of course, a lecturer would (understandably) become really annoyed facing a constant chatter. And recording? OK, it takes hours to go through a recording, normally hours I am having to rest. So, I have note-takers. However, whilst I have had a number of really good note-takers, even the best cannot take notes as I would. They can’t, through no fault of their own, simply because they do not have my experience, knowledge or conceptual awareness: humans have not yet developed telepathy. So the notes I get are much less than ideal, sometimes miss out what I need, sometimes go into far too much detail about what I don’t need. When I suffer from breakthrough, I am unable to write or work. Yet I have been (seriously) moaned at and ostracised by students simply because I ‘have someone to take your notes for you’ or because I am allowed ‘extra time’.

It’s all part and parcel of the low-grade contempt and isolation practised against the disabled, the bullying that breaks through into something much more serious. It is all part of the attitudes and contempt that creates disability.

It is all part of what drives my fear.

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