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Contents
There's no business like.......
Sound Familiar - Turner Teenager
The NOT so Crystal Maze
Partner's Leaflet
by Harula
Having been asked to write an article about the recent TSSS conference, with a focus on the drama workshop of course, I found myself in difficulty to know where to begin. So much passed through my heart and mind that weekend and so surprising and magical was the final climax of Saturday's performance that to put it into words seems almost a come down. It was one of those unique moments – a spontaneous creation straight from the heart, which relied totally on that indefinable relationship between performer and audience whose mutual excitement acts like a catalyst of inspiration.
You were all a part of that – the teenagers I worked with and those of you who watched and responded – and that will remain in memory written on our hearts and painted in our minds. But where did it come from. I'll let you in to a little secret…it sure as eggs wasn't from me!
Having offered my services I chose to create a workshop which, moment by carefully chosen moment, developed logically from warming up, and developing the vital team dynamic, to more specific exercises designed to create the necessary bits and pieces which could eventually be shown to our future audience. I had the proposed plan there in black and white and all I had to do was go through it bit by bit as I had in countless other workshop situations. Little did I know I might as well have left this at home and saved myself some typing time 'cos the girls had other plans…
"OK – lets start with a warm-up", I suggested, "Now what I'd like you to do is…"
"Hey, I know a warm-up…!" piped up one of the eager faces - and so it began!
From here on in I just supported them and fed in ideas when asked, nudged a little where motivation was needed and – HEY PRESTO! – the organic process of creating theatre had begun. No ten minutes of this followed by twenty of the other. No mournful expectant faces waiting to be told what to do. No, 'I only came because Lucy was doing it too' and 'Uncle Jack did a panto at the National didn't you know…' My word – what a refreshing change! I tell you the girl's should do a 'Woodpecker' advert! Talent and enthusiasm just burst forth as soon as space and encouragement were given and the result, as you saw, was truly amazing. Natural leaders emerged but the group also took great care to see that everyone, whatever their level of input, was taken along for the ride. This I found quite – I can only say – beautiful! The awareness within the group was almost tangible, the willingness to adapt and respond to the variety of needs on show was truly impressive and as a result the creative process was a wonderfully safe environment in which nothing was judged and everything was possible. I was there to make sure this was always the case. Because this is what Drama is all about. It's about trust. It's about teamwork. It's about release – and it's about escape. When you are on that stage in front of that audience you can forget about everything else. You can be beautiful! You can be confident! You can be successful – because hey – you're just pretending right…?
You see…therein lies the trick, the magic, the je ne sais quoi. Suddenly you realise you weren't pretending – that was real, that was you, you are beautiful – YOU JUST DID THAT!!!
And suddenly you learn things about yourself you never even knew, you tap into a new resource and a new confidence you never knew existed. Wow – what a feeling that is! I say all this and yet never before, in all my years of working in drama, was I as aware of it as I was that Saturday night. The day had been fun, I knew we had a nice show but the spark/heart was not quite there. And then – when it lit, when I saw that spark happen I watched amazed as it just grew and grew and the healing power of drama worked its magic. I can not begin to express the happiness I felt as those girls grew – and for once I don't mean in feet and inches!!! – I mean in ways that have no tallied measurement unless it is a special twinkle in the eye or a new found bounce in the step. I could not have asked for a better reward than those happy smiling faces and I will allow myself, just once, to say yes, at that moment, I was proud. Proud of what we had achieved together. Please don't for a moment think that I got any less out of the experience than the girls did!
And so to conclude may I thank you, Arlene, Lynne, for giving me this opportunity. For trusting me and having faith in something and someone you knew precious little about. Secondly thank you to the girls – you were an inspiration – and the fiver I promised you each, if you made me look good, is in the post!!! (Wink, Wink!) Seriously though - working with you was a pleasure and a privilege – each one of you. And finally thank you to all the parents and audience members who made a point of coming up to me and telling me how much they had enjoyed it. It meant so much and if I hadn't been so overwhelmed and in shock I'm sure I would have said so at the time!
What more can I say but that this is only the beginning – bring on London, Broadway – why not…BRING ON HOLLYWOOD!!! Well – we all have to have dreams don't we…
[Harula has said it all, those fortunate to be present will carry the pride and admiration of the achievements of these youngsters with them for many a long while – thank you Harula, thank you girls]
As promised in the last issue of ASPECTS following is the second extract through the 'Crystal Maze' of the benefits system produced by Helen for TSSS members.
What follows is a brief stroll through the maze of the benefits system focusing on those benefits which are likely to be of most relevance to members. Please remember that it is by no means exhaustive and while I hope that it is up to date things change very rapidly.
Payable to those who:-
Have paid sufficient National insurance contributions and
Are, except in certain limited circumstances, under retirement age and
Have been sick for at least four days in a row and who are incapable of work
The benefit is payable I three different rates: the short term lower rate for the first 28 weeks, the short term higher rate for weeks 29-52 and there after at the long term rate
Payable to those who:-
Are aged 3 months to 64 years and
Have never been able to work or who are still unable to work after 28 weeks but are unable to get Incapacity benefit because they have not paid enough National Insurance contributions and
Are assessed as more than 80% disabled
Care Component Payable to those who:-
Are aged 3 months to 64 year and
If they are aged under 16 need more help or looking after than other children of the same age because of their illness or disability or
If they are aged 16 or over they need frequent attention throughout the day or repeated attention at night or continual day time supervision to avoid danger or someone watching over them at night to avoid danger and
Have needed help for 3 months and are likely to need help it for another 6 months
The benefit is paid at a higher rate for those meeting both the day time and night time criteria; at the middle rate for those meeting either the day time or night time criteria and at the lower rate for those needing more limited help but who cannot cook a meal.
The benefit is not usually affected by savings or other income and is payable even if no one is providing the care needed
Attendance Allowance is the equivalent benefit for those aged 65 and over
Payable to those who:-
Are aged 5 to 64 and
Cannot walk or virtually can't at a higher rate or
Can walk but need supervision or guidance at a lower rate
Payable to those who:-
Are aged 16 to 64 and
Are spending at least 35 hours a week caring for someone who is receiving Disability Living Allowance or Attendance Allowance at the higher rate or middle rate and
Are not in full time education and have only a small income
Not payable in addition to Incapacity Benefit or Severe Disablement Allowance
Further help:-
BENEFIT ENQUIRY LINE – DISABILITY advice and information for people with disabilities and their carers about benefits. On request operators can also pass details on to the local disability benefit centre who will contact the caller an assist with form completion over the phone call:-
0800 882200 for general help
0800 441144 for help with form completion
0800 243355 for the Text Phone service for the deaf or hard of hearing.
DISABILITY ON THE AGENDA LINE 0345 622633 advice and material on the Disability Discrimination Act
DISABILITY LIVING ALLOWANCE CENTRAL ENQUIRY HANDLING SERVICE 0345 123456 advice on existing DLA claims
DISABILITY WORKING ALLOWANCE CENTRAL ENQUIRY HANDLING SERVICE 01772 883300 Advice on existing Disability Working Allowance claims.
The Editor was delighted to receive an article for this popular column from one of the Society's younger members, Amy Jones. Amy wrote that she thought that writing her experiences in ASPECTS might encourage other younger members to write articles for the newsletter but also to hopefully help them deal with any similar difficulties they may be having.
I'm a 14-year-old girl with Turner's. I was diagnosed at 3 days old and have been having growth hormone injections since I was four. As I was fortunate enough to be diagnosed so young I have always known the affect that TS will have on me. When I was young I only knew that TS was a growth problem, that I would have to have injections to help my growth and also have to go on a 6-monthly visit to my consultant in London.
Then when I was 10 my Mum explained to me the other side effects of TS, that I wouldn't be as well developed as my peers and that as well as injections I'd have to take oestrogen tablets. At first I worried that I'd stand out from the crowd and that everyone would gossip about me. I didn't know how to explain to my friends at primary school. I'd told them that I had a growth disorder and they knew I was having injections, but I didn't know how to explain about the other side effects, which bothered me much more than the height. I always felt left out because all the girls in my class had their own best friends and I didn't feel I could talk to any of them about TS because I knew in our school gossip was easily spread. I didn't say anything because I thought they'd think I was strange.
When I was 11, I started secondary school. There everything changed. I made friends who I felt I could really trust and so I told my closest friends that I had TS. They were incredibly supportive. My friend Clare was very willing to listen and I often confided in her when I felt in need of someone to talk to. It really helped to have someone my own age who I felt I could trust. Last year in English we had to do English presentations in front of our form. I chose Turner syndrome as my topic because I had known the girls in my class for 3 years and so I decided that I should talk about something that meant a lot to me. It took a lot of courage but eventually I managed to explain about TS and what it was, so that the girls in my class could understand why I was smaller, not as sporty and not as developed as them. I felt a real sense of achievement after my presentation because everyone said how brave I was and that really helped, knowing that the girls in my class finally understood why I am the way I am. It's taken a long time but now everyone knows I feel so much better because I'm not worried what everyone thinks of me.
I'm still far less developed than the other girls, but that doesn't bother me now as much as it used to. I now know that if I can explain Turner syndrome to my peers when I'm this age, then it's going to be a lot easier explaining it in the future to anyone.
I wanted to tell my story so that I can show other girls with TS that you can get over the initial loss of self-confidence. You can explain TS to your closest friends and believe me you feel so much better once you have. I certainly did. If any teenager with TS feels the same way as I did then just say you are the way you are, you can't change and your personality is what counts, not whether you are small or not well developed. If you have personality than that's what will make you go far.
Thank you Amy for your inspirational article. Ed.
The Editor would be more than pleased to receive more articles from younger members, remember this is your Society too. Also if any of you would be interested in teenagers Open Day?
[Hey guys this one is for you!]
Gavin writes
The partner's leaflets origins date back to 1994 with a single sheet produced by a TSS member. Following discussions during the CGF convention, in the spring of 1995 three couples met for a weekend in Newcastle with the idea that the guys would 'brainstorm' the beginnings of a leaflet while the girls undertook retail therapy. Following this weekend a draft was posted to another couple for comment and it was lost in the mists of time. Unfortunately no copy had been kept so nothing further was done until 1997. The loss of the leaflet was brought to the attention of a TSSS adviser and in conjunction with the husband of a TSSS member she produced a second draft for circulation and discussion at TS97 the International TS Conference. Despite some work to improve it, for one reason or another it stagnated until a TSSS Open Day in Sunderland in March 2000 when it was resurrected close to the original and I was asked if I would take responsibility for progressing towards final production by the end of the year, after discussion with other partner's during the Conference in October.
The starting point was the 1997 international draft and the 5 copies that had been returned with comments following TS97. Lynne threatened that if sufficient progress were not made she would nag! In fact her bark is possibly worse than her bite and via several meetings over dinner she finally had a scrawled manuscript for typing about 10 days prior to the Conference. In order to gain as broad a feedback as possible the draft was circulated not only to couples attending the Conference, but also to around 15 other TSSS member couples and via e-mail to couples in Australia and Canada.
During the Conference at a special session attended by a pleasing turnout of 7 old-hand couples, 2 first-timer couples and four women without their partner's a thorough discussion took place. Each section was taken in turn starting well with the suggestion of a new title " So you are contemplating a partnership?" Lively and productive discussion on each section followed, nobody held back and many new ideas came to the fore. Some felt that certain sections may be too long whilst others needed more adding to them.
Generally the response to the leaflet was favourable but some concerns were expressed at its length. Other abstract thoughts, which did not necessarily fit into any particular section, were mentioned, such as the need for tolerance, understanding and patience. A partnership is testing and requires commitment and other people's attitude or view of Turner syndrome.
Where to from here? I must be mad but I have promised the TSSS Committee that the final document will be completed by Easter 2001!
The Society is also forming a Couple's Network as it is well known that those best able to help others in similar circumstances are those with personal experience of a situation. Anyone interested in either the Partner's leaflet or the Couple's Network should contact the TSSS direct. If you wishing to write to Gavin please do so c/o the TSSS office marking the envelope Partner's/Couples in the bottom left hand corner,if you wish for a reply please enclose a SAE or stamps to cover postage.
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