Scotland
Region
Scottish Report
I attended, for
the first time, the Regional Contact Weekend in Coalville
Leicestershire on the weekend of 5th and 6th April.
To say it was a
learning curve would be a fair description. I had only ever attended
one TAG event in Scotland. I found myself questioning why I had left
it for so long? Why had I not availed myself of all this support? The
answers were not easy and I found the whole weekend to be both
uplifting and painful.
Uplifting in the
sense that I met a group of like-minded people who were joining
together to work for the benefit of people with Arthrogryposis. They
were welcoming and warm and they talked about something that I knew
intimately, the struggle parents and children have when Arthrogyposis
manifests itself in a family member.
Painful in the
sense that, by talking about them, I relived the feelings I had when
Caroline was born and the struggles that we had to get her walking
and to have as much a degree of 'normal' life as was feasible. I have
spent much of her life treating her, as much as possible, as her
able-bodied brothers and sister were. She is now 18 and at University
and is coping well with her differences from other people. She would
like to be the same. She would like to wear short skirts and sassy
shoes instead of the constant trainers. She would like to go to clubs
and dance all night but she has decided that is not for her. She is
coping with her sexuality in a world where she is not the same as the
norm. Her legs and feet are very different. Will it matter? These are
the issues she lives with and I feel a pain in my heart when she
tells me. I feel for her in the same way as when she was sitting in a
bath in France and I asked her what she would like if she could
choose anything in the whole world. She said " A pair of real
legs Mummy." top
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I spent the weekend talking to other mothers about their children and delving into the feelings I had when she was born. The feelings of shock and guilt I had when I saw her. Had I done something to cause this? The feeling I wanted to take any baby home, but not her. The feeling the next day when I held her and walked around the room singing into her ear the same songs that I had sung to my older children and the feelings of love and protection and determination that had swept through me then. The anger when the surgeon told me what was wrong. Why her? Why us? Had I already enough to cope with in my life? All these feelings came flooding back and the realisation that we had coped. Caroline and I and her siblings and father had coped and grown. |
Why had I not got
involved with Tag before? I live in the far North and I had a sense
that it was too far away to be relevant to me. In retrospect I wish I
had been able to talk to other mothers about all those feelings when
I was trying to deal with them, and am still dealing with. I wish I
had been able to be in contact with one or two parents who were
facing the same problems. I wish I had not isolated myself in order
to cope. Got the head down and just coped.
It was with all
these feelings I addressed some of the issues of the weekend and I
came away with a better sense of what is needed and envying the
English reps their more manageable regions. I have very strong
feeling that we need to rearrange the Scottish region in order to
make it relevant to the members. I am too far North for many but I
can co-ordinate it and cover one area. I feel we may need to chop
Scotland up into sections and have link members who can be in contact
with the members in their areas in the same way as the English reps
are. I want to make available to our members what I missed. That
listening ear that is also near enough to be useful. That shoulder to
cry on when times are hard. That face to share the joy when children
walk, or feed, or do some of the things that is taken for granted in
the able-bodied world. Someone simply to talk to who understands
where you are coming from. top
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I am going to construct a Questionnaire, which will go out to all 49 Scottish members. I want to know how they feel and what they want. How can we make the benefits of TAG more available to those who want to use it? |
Much of the
weekend was spent examining the issues of how regional reps can reach
out to the members. What events are useful? What can we do to
encourage members to participate? What do you need from us, from each
other? I have no real answers now but the Scottish members will get a
few more questions, which may clarify how I can be of use. I am also
to examine the Child Protection Policy that TAG uses and that will be
a wee challenge for my brain that can be somewhat under used now that
I have retired.
I am glad I went.
It was a challenge physically and emotionally for me. I looked at
issues I thought were long forgotten and realised they are still a
part of my life. After a car crash I too am disabled. Caroline and I
walk along together and giggle at the fact we both are wobbly
walkers. Caroline is grown up now. We are both still learning but I
want to put what we have already learned to some use for those who
are further behind us along that path.
Carol Fenelon top
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