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Monday 8 March 2010

Finding one's voice: Part I

"Spirals", by Susie Mallett, February 2010

Children and young adults
Learning to say no

I have been gathering my thoughts on speaking out, finding a voice, saying Yes and saying No, for about two years now. If I don’t start writing it soon it will be the same as the food blog. It will stay hidden in notebooks and USB sticks for another two years, getting lost, deeper and deeper in the old files.

Finding my voice

Two things happened last week to jerk me into action on this one.

So I will start this series with stories about children and young adult clients who are learning to find their voices, learning to say what is on their minds, learning to say Yes and No, or That‘s enough.

Open arms

There was a new member in our worker’s group last week and as always the group welcomed him with open arms.

You know that‘s what I like most about this group, and the stroke group, they are always game to try something new, always welcoming to new members, even though they know that for a while it will make things a bit harder, with less time for themselves in the group.
The worker’s group has always been like this. It was always our aim right from the start when there was just the two of us to increase the size of the group. We want to have a bit of a social evening too!

The stroke group was different. Earlier the members of the group were older and more nervous about anything new. But over the years the older members got used to it, inspired by the enthusiasm and confidence of the younger ones.

Now it is adventure after adventure, and a change is welcomed with open arms, even when this means a new member of the group who uses up some of their valuable time.

So on Tuesday the worker’s group welcomed with open arms our newest member.


It is funny how life sometimes seems to turn full circle but it is really spiralling on its way upwards.

The young man who joined the group has just arrived in Nürnberg. He is twenty-four years old. Many years ago he was attending the group that I was working in as a student at the Petö Institute.

It isn’t a coincidence that he has landed up here, he came because he knew that there would be an opportunity for him to continue with his conductive upbringing. It is a coincidence, however, that we knew each other. Of course we didn’t recognise each other at first, he has forgotten most of what happened there in Budapest when he was just four years old. But I remember working with him, I remember what he looked like twenty years ago.

He hasn’t been part of a conductive group for six years but it wasn’t difficult for him to get stuck in again. He told me what he needed and how I could help him and we all got on with our work.

In the bits-in-between we were all thrilled that along with new a client new subjects for discussion were cropping up.


We talked about the love of riding around in fast electric wheelchairs, trying out the VW trikes at the summer Fest, or pedalling really fast on bicycles. We discussed the fact that it seems to be the athetoid clients amongst us who love speed the most.

Could it be that they enjoy the freedom of movement? Could it be that the thrill of the speed stops the jerks, lets the muscles rest? We shill have to do some research!

This was the light-hearted subject that we touched on.


On a more serious note we talked about the need for clients to tell their carers and therapists how and how much they are allowed to touch them. This is not something that gets broached very often, it seems to be one of those taboo subjects. It certainly isn’t taboo in my groups though. And with a new client amongst us it was top of the list.

It is something that I consider very important and I insist that my clients speak up when something doesn’t suit. I encourage them to talk about what it is like for them to have relative strangers always intimately touching their bodies.

I encourage my clients to speak up with a loud and confident voice. Their own voice. The voice that is allowed to tell the world what they want, and what they don’t want.

Their bodies are their ow. They are the ones who know and need to say what goes, and what doesn’t. They have to learn to say “Hang on a minute that’s not OK”, or “That hurts”, or to explain that sometimes things work better if done differently.

No one will know that there is a problem if the clients don’t speak out. We practise this in the group by having lots of discussions and opportunities where choices can be made, when preferences can be voiced.

A real eye-opening time

In 1997 I broke my wrist badly. It was pinned in four places which meant that I wasn’t working as a conductor for a long time. I had a lot of physiotherapy at this time to try to get it moving again, all the stuff I couldn’t do myself, single-handed.

I was amazed how little thought some therapists gave to the closeness of their bodies to the client’s, and did not seem to realise that this closeness was often uncomfortable for the client.

I must admit that I didn’t much enjoy having a complete stranger’s chest in my face while my wrist was being manipulated.

I didn’t enjoy being touched by strangers at all. I found it all rather difficult. Daily life was suddenly difficult, with me having only one arm and pain in the other, and my partner with two fairly good arms but legs that needed a wheelchair. I discovered how hard it can be to be tough and shout in a confident voice, when really in need of assistance but at the same time not happy with what is happening to you.

I only had to put up with it for a few months others have to do it for their whole lives. But even so I found it almost impossible to find my voice to say “Please, take a step back, you are too close for comfort.“

It was just as hard to say “Ouch, you are hurting me“, and I found it absolutely impossible to say "I don’t feel like having a stranger so close to me today“.

I did however learn a great deal and I did sometimes manage to say what I felt.


I try to teach my clients, especially the teenagers and young adults who are so conscious of how they look and are so unsure of how to behave in many situations.

I have been planning a long article for a long time, years in fact, called “Awkwardness and saying No“.

This posting deals with the first sort of saying No and the first sort of awkwardness. It is about disabled youngsters finding their voices and the confidence to stand up for their rights and their wishes.

There are many more aspects of saying No and not only from the clients point of view but I thought it appropriate to begin with clients' learning to say no and our part as conductors in encouraging it because, this is what came up in my group last week.

As conductors it is a part of our job to show a disabled person how to make their voice heard in a way that notice is taken. Encourage a voice that exudes confidence and respect. We need to teach at the same time the importance of posture and facial expression and the need for eye- contact so that the voice will be heard with full impact and not made invisible by a body shrinking into a wheelchair.

We have to discourage our clients from believing that they are invisible beings with no voice in the world. We need to discourage them from being dependent in all aspects of living, we must stop the ability to say No from being taken away, and encourage the ability to also say Yes.

It is out responsibility alongside parents, teachers, carers and therapists, to ensure that our clients are brought up knowing what they need, what they will allow. They need to learn how to ask for what they need and how to say how the help that they need should be given. Our clients need to learn that they don’t have to put up with anything that oversteps their personal space and wishes.

Petö friends

I wrote most of this posting in my notebook last week as I was walking home over the fields, my back bathed in sunshine from the most amazing sunset. I was thinking about the time with my worker’s group discussing saying No, and also about what had just happened minutes before, with two of my seven-year-olds. One I had accompanied to speech therapy last week, and her “Petö” friend who she has known for five years. These two littlies were sitting at the table sewing and chatting, the girl saying “Wow” each time that she hit the spot she was aiming for with her needle, the boy saying “Wow” every time that he understood what his friend was saying. Both of these “Wow” events happened quite often.

He was actually talking incessantly as always, sometimes taking the Mickey out of us both and sometimes getting on little girl’s nerves! Mine were holding out. It sometimes takes a naughty little boy to help a little girl find her voice, it also takes a lot of hard work and intensive speech therapy and much determination.

The athetoid little girl said suddenly, loud and clear and confidently “Leave off!“

I was surprised, but little boy was shocked. He looked at me and opened his eyes and mouth wide before saying in a softer than normal voice “She told me to leave off."
I replied that she certainly had said that, and perhaps it would be a good idea to do so.

He did stop the teasing, for a few minutes anyway, and that gave little girl the confidence to say it again whenever she feels it necessary. She now knows that she will be understood.

Little girl is finding her voice, little boy is listening

These two are both developing in so many ways. Little boy is learning to listen, discovering how his behaviour affects others, he is learning to be patient and to do things just a little bit more slowly if he wants to do them with his friend.

She has learnt to say No. She had to repeat it several times before real notice was taken, but it worked. Her friend is delighted, he is discovering a new side to her.

These two have grown so much recently, not only in height. They really are schoolchildren, socialising now in a new and exciting world. They are more aware of each other, they enjoy each other and recognise new traits in the other’s personality.

They are slowly and surely making their own way in the world and learning how to use their ever-stronger voices.

They are learning at a very young age how to say No and how to say Yes.

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