TOURETTE SCOTLAND BULLETIN BOARD NUMBER THIRTEEN
’THE VOICE FOR TS IN SCOTLAND’
The Fife Group: The next meeting is on 18th January 2012, on the usual WEDNESDAY in the Dell Farquharson Centre in Dunfermline, from 7pm. The usual warm welcome and support for Fife members. Abbie Steggles is running across the Forth Road Bridge to fundraise for the Fife Group funds, on 22nd January. To sponsor our budding athlete contact ruth@tourettescotland.org
The Central Group: We now have a date for the inaugural meeting. It is on 4th February from 10am to 1.30pm above the Rock Centre, Port Street, Stirling (blue door, entrance on the left, next to the Arcade). The venue has four 'break out' rooms and a large main room, so we can flex our muscles! Raffle, arts and crafts, and tea/coffee and biscuits. Parking nearby for £1 a day at Forthside and from there the venue is accessible over the footbridge. Stirling bus station, and train station are right opposite. Contact ruth@tourettescotland.org for more info. We welcome members from all the other groups too; this group will be a regular event for everyone. We would appreciate something for the raffle, thank you.
The Highland Group: Hosts its regular bowling meetings where carers/parents can share experiences in a vibrant atmosphere but also enjoy a bit of ten pin bowling. Contact ruth@tourettescotland.org for dates or referral to the Group.
Kerrey Mitchell of the East of Scotland Group appeared with her son in a Daily Record article which explained about her being part of the group (which she runs with Paula Miller). Well done Kerrey and Paula. http://www.dailyrecord.co.uk/news/scottish-news/2012/01/04/mum-tells-of-eight-year-battle-to-have-son-diagnosed-with-tourette-s-syndrome-86908-23677744/#.TwQ9NO\tew8.mailto
David Cameron was forced to apologise after telling the Sunday Telegraph that the Shadow Chancellor Ed Balls' heckling was 'really annoying, like having someone with Tourette's Syndrome sitting opposite you'. As you would expect, Tourette Scotland has been dealing with some fallout, and we spent hours dealing with the flow of complaints and those who feared that this comment would lead to bullying at school for example:
The Good: A lot of positive coverage. Tourettes Superhero said in a Radio 5 interview about Mr Cameron's remarks and the stance taken by the national papers: "The reality is that Tourettes is a complex condition which can be both physically and socially disabling. The assumption that it's only about sweariing makes it even harder for the 90% of people who have it but who haven't ever ticced an offensive word". People with TS are taking the opportunity to explain why the comment shouldn't be taken lightly: "Yes some symptoms may appear funny - ask a sufferer as even they will say some of the things may be humorous. It is what in some instances keeps them going. There is however more to Tourettes Syndrome than simply vocal outbursts and swearing". Many of our members went online and on forums to deal with the issue. Even more have written to the Scottish and British Governments with the facts about TS, which raised awareness across a wide range of influential people. Well done!
The Bad: Tourettes, as we have all witnessed in numerous comedy shows, is considered "quite amusing and something of a joke.." "of course people don't "suffer" from it". "No harm has been done has it?" Ignorance is not bliss. This shows us what we are up against - it's what our members encounter every day.
The Ugly: Our official response was given on Saturday night and thereafter, to several papers about their representation of TS. As a consequence of the David Cameron remark, the papers' stance was not treating TS as a serious condition, and showing little understanding. It resulted in the following statement in one national newspaper: "The first to complain, of course, was an organisation for people who have Tourette's...they said they were 'deeply saddened' the lifeless saps. A shrieking harridan wrote to the Guardian newspaper..." (NB this was the parent of a child with Tourette syndrome, who in fact gave a good account of herself and of what TS is). "There really is nothing left about which you can make a joke without some self-important charity screaming blue murder and threatening to ring the police...instead of apologising, Cameron should have responded with two words, which, as sufferers of Tourettes, they would understand." What we did was to issue a statement about what Tourette Syndrome is, and how comments that purport to use the Syndrome as an insult, or barracking, could be construed as not understanding the condition at all. And in terms of this being from a government figure, who is immured in current Welfare Reform, that lack of understanding will have a devastating effect on the confidence of those who are hoping that there will be revision to that reform. As it stands, the Welfare Reform is going through parliament and the House of Lords, and our hopes are pinned on further enlightenment about TS as a neurological condition, making a change to the current swathe of benefit cuts for our sector.
So...Tourette Scotland knows that we will always be at the brunt of the small minority who like to pillory, criticise or wilfully misunderstand our condition. It is harder to understand when it is a public figure which puts our work in jeopardy. However, the overall response has been to increase the profile of what Tourette Syndrome is, and has garnered much interest from our politicians. Many of our members have written to their MSP/MP to explain why Tourette Syndrome is important and should have a higher agenda in policies, funding, and services. As a consequence, we have been invited to meet with Scottish Government representatives to discuss the impacts of Welfare Reform, and look at the somewhat sporadic dispersal of support services in Scotland. Who knows, this could have a good outcome for us, in the long run. Thank you all for riding the storm. You are brilliant!
Welfare Reform bill latest: "Government suffers Lords defeats over welfare cuts": Peers voted by 260 to 216 to protect up to 15,000 young disabled people from cuts to employment support allowances. They voted by 222 to 166 to exempt cancer sufferers from a limit. Critics had said the plan had meant disabled children who could never work would never be entitled to benefit. The battle isn't over by a long chalk, there are still discussions ongoing and the Government are determined to see budget cuts. For more, see BBC news: http://news.bbc.co.uk/today/hi/today/newsid_9676000/9676207.stm
To sign petitions online about Welfare Reform:
https://submissions.epetitions.direct.gov.uk/petitions/20968
To sign petitions online about joking and Tourette Syndrome
http://www.petitionbuzz.com/petitions/nojoke
Our School support services have been busy lately. We have found an increase in requests for school review support, for awareness training and classroom peer support. If you or your family members are having problems with school - perhaps it's a sensory issue with your uniform, the bright lights or noise in class, or that your gestures and tics are being misunderstood by a teacher, or that you find it hard to explain your TS to others in the class. Let us know, we offer complete discretion to approach your school and have a range of support mechanisms that will help. Contact help@tourettescotland.org
Are you someone who hasn't been in touch with Tourette Scotland for a long time? Do you feel that because you haven't renewed your membership, that you can't contact us when you need to? YOU CAN!
We know that sometimes it can be a long time - even years - between your needing our information, advice, training or outreach support, but we will continue to keep in touch, and keep you on our database, and will always be pleased to hear from you. Any questions, any worry - we are the voice for Tourette Syndrome in Scotland - your voice - and we are always here for you. We can be contacted anytime.
Contact us: Telephone 01738 646742 or on our Helpline 0300 11 11 462
Email: info@tourettescotland.org help@tourettescotland.org
Find us: www.tourettescotland.org www.http://tourettescotland.ning.com
or Tourette Scotland on Facebook under our Tourette Scotland Group name.
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