Friday, 17 April 2009

Cerebral palsy: 'I hate it'

Someone has to say it

Every week I have a look at the second page of Norman Perrin’s Conductive Web, the one called ‘Parent blogs’:

http://www.netvibes.com/conductiveweb#Parent_blogs

These are not Conductive Education blogs as such (find them on the first page). Rather they are blogs about bringing up a child with cerebral palsy, that have along their way mentioned Conductive Education. Mainly they are concerned with bringing up children with cerebral palsy.

A stroll down an unfamiliar street

I recommend that everyone with a ‘professional’ interest in Conductive Education for children with cerebral palsy and their families should do what I do, look from time to time at the parental blog linked to by Conductive Web, to get a little perspective and to lean a little humility.

I write ‘a little’ here because moving through these blogs is like walking down a street in the darkening evening, glancing where you can into people’s windows and trying to understand the strangers’ lives to be espied there. Through some window there is darkness, others are obscured by plants or curtains, and of course there is rarely any sound to be hear from within. Some windows, however, are brilliantly illuminated, every detail is momentarily revealed, sometimes too the casements are thrown back and you even hear what is being said.

Of course you gain at best only snap shots of life, often only its extremes of joy or distress, but by the end of the street you will have gained sort of impression, however subjective, about the lives of the people who live there.. What little you experience is not representative of everyone who lives in that street, missing especially all those people who draw their curtains, though it might be (you cannot know). Nor is it representative of the rest of the lives of those whom you do glimpse: it might be, it might not, again you cannot know.

There are many other such metaphorical, virtual streets out there, a huge city of people who blog on all sorts of different aspects of living with disability (or post their experiences into Cyberspace though other means). This particular street is picked out here solely because the families seen there have had contact with Conductive Education at some time. Maybe these blogs are typical of all family blogs expressing themselves on the experience of disability. Perhaps not. It matters not here.

I myself would be much the poorer for not looking at these blogs. I strongly suspect, though, that relatively few people professionally involved in Conductive Education do look at them, or are even aware that they exist. There are of course other ways into people’s experiential lives than through these particular windows. I sincerely that others use other means, any means. I live in hope. If they do not by bsome means try and share in the subjective, then they are the poorer for it, spiritually impoverished, and so is Conductive Education.

Who are these parent-bloggers?

They are largely American, largely the parents of young children, and largely mothers.

  • I suspect that most of them live in the white suburbs.
  • They have to spend an awful lot of money on their children.
  • Some post regularly and often, some more rarely, some seem to have abandoned their blog.
  • On the whole, I quite like their choice of music!
  • I am sure that they have as many motives for blogging as there are bloggers.
  • They tend to think of CE as ‘a therapy’. They do as a group seem to know a lot about all sort of therapies, and have tried not a few, CE included.
  • They do not seem to have picked up much conscious idea of what conductive pedagogy and conductive upbringing are about, though they appreciate it when CE patently does their children good.
  • They are not CE-anoraks. Conductive Education is something that they have tried. It may have enthused them, it might cause them problems. Some are still plugged into Conductive Education. Some have let it go.
  • They can generate a host of comments to their postings. Some of this is from fellow bloggers (no surprise here), some of it from relatives and supporters. Some of it is from people who have corroborative experiences and opinions that they want ton share.
  • Some of these bloggers are brilliant diarists. Some are not.
  • Some of what they write (and what is written by those who comment on their postings) is not to my taste. Some is far too sucrose and there it too much God and to much therapy for my liking. That, however, is my problem, not the writers’.
  • All the material in these blogs expresses raw human experience and emotion, sometimes unbearably raw. That might not be to some professional taste, and you may wish to avoid it (though if that is the case, then one does tend to think of cooks, heat and getting out of the kitchen).
A rich mixture then, and I am clearly not the only one to feel this, as is demonstrated by those blogs that carry hit counters and visitors’ maps. Some of these very personal blogs of family experience seem to attract more hits from around the world than the whole CE-anoraks’ blogosphere combined (the blogs on the first page of the Conductive Web).

A very recent example

Of course I have my personal favourites, though it would be invidious to express preferences here. I have been meaning to express the general comments made above but, just hadn’t got round to it. Tonight has been an insomnia night. The best to do is to stop thinking, get up and do something. I decided to make my weekly check on the Conductive Web.

The most recent posting notified there was by Jacolyn Lieck in Texas, only two hours old and already with four Comments (would that I could attract such an immediate response!). Now, a couple pf hours later there is a thread of eight comments, some as raw as Jacolyn’s.

Here is what Jacolyn wrote, complete and unexpurgated.

I hate it

May I vent? Well, of course I can... it's my blog.
  • I hate cerebral palsy.
  • I hate not being normal.
  • I hate going to the playground.
  • I hate not being able to visit with the other mommies at the playground and play groups. I don't get to know the other mommies.
  • I hate it that all the mommies sit around and chat while I am being my daughter's legs.
  • I hate it that I don't like to go to play groups anymore.
    I hate it that these same mommies will talk about cerebral palsy and "the little girl in KinderMusik who has cp and can't walk so she crawls around awkwardly", when they think I'm out of earshot.
  • I hate that my 3 1/2 year old daughter sits in the stroller while I help my other two kids go down the fireman pole.
  • I hate that when my daughter requests "I want to slide too" that I can't let her because the slide is too tall and I need someone to help me.
  • I hate it that I leave her in the swing too long sometimes, because it's easier.
  • I hate it that some mommies with 2 perfectly normal children can't find time to do anything but talk about how smart and athletic they are. (I know I'm kind of harsh on that one)
  • I hate it that I can't find time to do anything because I'm always taking my daughter to therapies and doctors.
  • I hate it that all our money goes toward therapies and procedures rather than dance lessons and soccer camp.
  • I hate it that I can't do more with my other two kids because I am my daughter's legs.
  • I hate it that I hate it.

What do you hate?

Click on the link below to see the comments building up in answer to Jacokyn's concluding question. You might even like to add your own.

http://lieck3.blogspot.com/2009/04/i-hate-it.html

2 comments:

  1. Thank you for drawing my attention to this. We all take our 'ability' for granted and tend to forget the realities of 'disability'.

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  2. Hi Andrew. One of the things I like about reading your blog is that I need my dictionary nearby; and I'm an English teacher! - I am one of those who seems to have "abandoned my blog." And I can very much understand Jacolyn's feelings.

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