" Late winter, early spring, sunset ", by Susie Mallett, April 1st 2011
How much can we do to protect our clients from a big-wide-world that can sometimes be very cruel?
We must of course include the big-wide-world or even the smaller-but-still-widening-world of the clients in the education package that we provide. Sometimes the world out there is too tough to go it alone.
I was reminded yesterday, during a situation at work, of the struggles that we had when I was the partner and carer of a man whose movements were restricted by multiple sclerosis.
We struggled with the question about whether we should bother to educate or just ignore it, when assumptions were made that were very hurtful. Mainly these were assumptions associated with the notion that people who sit in a wheelchair do not have a voice of their own or that people who sit in wheelchairs do not wish to attempt to do something for themselves.
Obviously this was not the case for long. It changed as I learnt to speak and understand German. Then I learnt how to very politely say, when receiving the answer to a question my partner had asked, that I did not need to know the information but my partner did, so please speak to him.
Once we were at the airport seeing off my sister. My German “sister-in-law” was there too. She was dumbfounded when an airport-worker approached her and began to talk to her about wheelchair access in planes. She soon realized that the information was in answer to a question from my partner that she had not even heard being asked. She soon made known her astonishment and wanted to know why this had happened.
It is nice to remember how my partner was always delighted when we were in England and in Canada where, he often remarked, he felt like a man without a wheelchair, because it seemed that no one noticed it, no one asked me: "Does he take sugar?". Not once did I have to take a step back to avoid receiving the answers to his questions. If I stepped backwards it was only because the crowds wishing to speak to him were so large!What happened to remind me of all of this?
The emergency helicopter landed on the meadow that is soon to be the building-plot for our new Conductive Kindergarten.
I looked at Littlie and asked: “Is it landing, should we run? She nodded yes, I grabbed her as best as I could and we arrived at the door by half-running and half flying, just in time to see the dust rising from the dry grass and the skis of the bright red helicopter already touching the ground.
Not only were the Kindergarten children and the afternoon-conductive-group children out there in the unusual-for-April, twenty-six-degree-heat, but one-by-one the children from the neighbourhood started to appear too. And where did they position themselves but right in front of one Littlie who was outside holding my hand? She was without her rolator so she could not move around independently, and these other children knew it. In the end I had to ask them to move aside. They were less than happy, despite there being a field of space for them to stand in. It seemed like they wanted to block the view!
When one of our children said that she would like to climb a tree I asked whether a “visitor” would get down for her. I had expected the excitement and offers of help that I receive from the integrated Kindergarten group, but no. Instead I heard a stream of comments: “Why should I? I am in this tree. She cannot do it anyway. She cannot do things on her own.” There were no direct questions to the child who wanted to give it a go.What was I to do?
I could not ignore it. I again suggested that a place be made free in a tree, and reluctantly one child said she that would move, although still insisting that she bet that my client could not get up there anyway. I was open-mouthed; I expected them to be excited and happy to help. This reaction was worse than any of those "Does he take sugar?" instances that I had experienced with my partner for all those years. These children all know each other, they all know the centre for the people with disabilities and they live two-hundred metres away. If this is what life in the small-wide world is like what on earth is it now like in the big one?
I decided that I must speak, so I told the children that I thought that how they spoke to their neighbour and play-mate was not acceptable and that I did not wish to hear them speaking like it again. At this point a conductor colleague arrived on the scene and our little client was up the tree in no time at all, surveying the scene and noticing many things that she had never noticed before, from the ground, pointing out what she could see in buildings in the distance and looking straight into the window of the helicopter.
And I was left questioning whether I had done the right thing and asking myself whether things will change for the better or the worst for people with disabilities who are joining in with the big-wide-world of life.Notes
Does he take sugar? -