Thursday, 24 January 2013

perspectives on routes into disability

I'm sure many of you will have read 'the thing about Holland' as it seems to be known, a lovely piece of writing about how it can feel when you don't quite get what you signed up for.  While I applaud the overall positive message, I've found that I seem to retread some of the emotional upheaval every so often ~ you know, the whole 'why did this have to happen' thing.  Something else I've thought about over the years (in that fatalistic way we humans tend to) are the different introductions into the world of disability, and whether the path you start off on has any influence on the rest of your journey.

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Mr Manley and I found out Smiler was going to be different shortly after he was born, and given a definitive genetic diagnosis, along with an extremely pessimistic prognosis, very early on.  As it turns out, Smiler has far surpassed those early expectations ~ are they still called expectations if they're things that they say won't happen? ~ anti~spectations? non~expectations?  Well, anyway, that great long list of things he would never be able to do included smiling, recognising people, walking and talking ~ fortunately he likes a challenge, and obviously the scientists in those early days were not as omniscient as they appeared to be (or wished they could be perhaps).

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As soon as we were parents, we were parents of a child with disabilities, and were recognised as such ~ we didn't have to argue with doctors and other professionals about whether or not there was anything wrong.  It must be soul~destroying, having to fight to get people to see the problems that you can see within your child, pointing out negative behaviours for them, maybe keeping a diary of day to day life . . . dear diary, today I had to get milk from the shop.  I spent forty minutes explaining to Fred, and it took an hour to walk there since we had to stop at every manhole cover so Fred could look at the writing.  Once we got to the front door of the shop, the automatic doors weren't working, so Fred refused to go in.  I tried to tell him it was okay, but he got upset and started screaming and tried to hit me.  An elderly lady walked past and went into the shop shaking her head and tutting at me, and she must have said something when she got in because the security guard came out and told me he had called the police, so I should let go of Fred's hands and go inside with him.  Fred pulled away and ran into the road in front of a car, but as usual the driver was shaken and Fred hadn't even noticed ~ he was looking at the labels on the recycling bins.  When the police got there they said they were going to phone social services, and I think they thought I was bluffing when I told them to go ahead, because social services  weren't interested in helping.  The police drove Fred and I home, but I couldn't have a cup of tea because we didn't have any milk . . .  I don't have any qualifications about that kind of thing, but surely common sense tells us that having to repeatedly list our child's 'negative attributes' must have an impact on the relationship you have with that child ~ do professionals recognise that do you think?

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Another route into this disability maze is through some manner of acquisition ~ a child who suffers a brain injury during a car accident perhaps, or survives cancer but is different when they come out the other side.   This has happened to someone I know, and for the family, they struggle to manage her behaviour and additional needs every day, alongside a very real (although socially unacknowledged and unacknowledgable) process of grieving for the child they no longer have.

While Mr Manley and I pictured our child as ordinary and run of the mill (while also being wonderful and intelligent and kind and gorgeous of course) for the period of time before he was born, this family had this ordinary run of the mill (wonderful etc etc!) child for several years, and she is now so different they struggle to reconcile this child with the one that became ill.

There are infinite angles on this, even when you restrict yourself to the disabled children/parent perspective ~ you can have an individual who knows prior to the birth that their child is going to live a difficult life, those (like myself) who found out immediately after birth, others who feel something is wrong and (sometimes) struggle for considerable length of time before that is recognised by professionals (medical or educational), and still others who have an 'ordinary' child until . . . just until.

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Over time I've come to believe that there is no universally easy way to enter the disability arena, partly because every single one of us, parent or partner or child or sibling or grandparent or friend bring with us the total of our own life experiences.  So much is dependant on elements over which we have no control: the impairment or disability or illness itself; the amount of related experience we have; public perception of the disability.  The only sweeping statement that can really be made is that the first step on this road is entirely unique ~ as entirely unique as each and every individual that takes it.

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