Paper well received

Really enjoyed presenting the early findings from the project at the CRASSH conference in Cambridge yesterday.

The poster provoked some really interesting questions and discussions. One of the best came from a newly qualified doctor who asked ‘TS that’s the one where you shout out swear words right?’. Thanks to this project, this young doctor and her colleagues will now have a better understanding of TS after our chat, as she promised to go away and spread the word! 

Next task is to finish funding proposal and submit the early findings journal paper. 

Many thanks to everyone involved.

 

Poster Presentation

“Slowly slowly the egg will walk” (traditional Ethiopian saying).

Developing and co-ordinating a research project from scratch takes effort and energy. Thankfully things are progressing. The project received a good write up in INVOLVE’s latest newsletter (http://www.invo.org.uk/posttypenewsletter/autumn-2013-2/).

This is great as this project promotes the idea that research should come from a grass-roots level and should be considered equal to research developing from the perspective of  ‘what can we get funded?’.

I have always worked on the basis that if research needs doing it’s possible to get on with it – but having said that I live in my overdraft! The realities are money is tight everywhere and this especially applies to academic funding.

Invitation to present a poster – watch this space!

Been confirmed that I’ve been invited to present at a conference in November. Currently designing a poster to accompany the presentation which will include snippets from the interviews collected in May.

This is great news. The Tourettes Listening Project is still very junior. In the world of academia presenting at big conferences is a sign of recognition.

More details to follow.  

http://www.crassh.cam.ac.uk/events/2476/ 

Busy busy!

Things have been busy busy. Aside from working hard on a formal proposal for further funding, I’ve been working on a couple of journal articles and an abstract for a conference paper which I will give in November.

More details about these to follow shortly – but for now I’m back to reading and writing!

Any suggestions of useful books/articles/TV programmes gratefully received please! If you have any ideas about the type of TS research you feel needs to be done please let me know!  

How can oral history help people living with TS?

The Tourettes Listening Project is up and running. With eleven interviews already completed and undergoing analysis, the reaction to this project is overwhelmingly positive. It seems that people with experience of living with TS (and this is not only those that have a diagnosis of the condition) want to share their experiences of life with TS. Meanwhile those that only have a vague idea about life with TS (often gathered from programmes seen on TV) are genuinely interested to hear about the real-life implications of TS. 

There are currently lots of ongoing research projects on TS – so you would be forgiven if you asked “why is the Tourettes Listening Project different to all the others?” In a nutshell it’s different because it asks people to tell their ‘TS life story’ in an oral history interview. By doing this we can gather information from people who are often absent from other research into life with TS. 

The objective of oral history (OH) methodology is to help those usually ‘hidden from society’ to have a voice.[1] This kind of approach is ‘distinguished from other forms of interviews’ such as those used in Sociology or Psychology, because of their ‘content and extent’.[2] Unlike other types of interviews, the approach of OH ‘life stories’ encourages people to tell their story without editing out the every day aspects of their life. It is often the seemingly mundane details that turn out to be the most informative! Using OH interviews in health research is a very established approach.[3]

Over the next few weeks I will be putting together a formal research proposal, which will be used in funding applications. This will allow the project to expand. More importantly it will provide the resources needed to ensure that the OH interviews that have been collected so far, can be analysed thoroughly. It will also cover the costs of collecting and analysing more TS life stories.    

Stigma is caused by ignorance. The Tourettes Listening Project gives people who have experience of living with TS a wider voice. These voices challenge misunderstandings and stereotypes. As a Medical Historian I merely collect your stories and present your voices. Together we can shout more loudly. 

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[1] For more information on the objectives of Oral History as a methodology see http://www.ohs.org.uk

[2] http://www.oralhistory.org/about/principles-and-practices/

[3] For examples see the on-going project in West Sussex http://www.speakingupfordisability.org.uk  There are also lots of example of the way in which OH has been used to explore the ‘lived reality’ of disability in the British Library  http://www.bl.uk/reshelp/findhelprestype/sound/ohist/ohcoll/ohhealth/health.html

The Listening Project is on Face Book.

Check out the Listening Project on FB.

Search for Leah songhurst with a funny ear picture!

This will change once a logo is designed – anyone out there who is artistic I’d love some help!

What now?

Some really amazing interviews were collected at the weekend. What should we do with them? Would you like your stories to be told to others? Should they be archived forever or would you like them to be used in other ways?

Let me know. 

Listening Tent Family Friendship Festival May 2013

I had a fantastic time up in Northumberland at the Tourettes Family Friendship Festival. Many thanks to all of you who helped organise this event.

It was life changing.

Over the three days I was privileged to listen to and record 12 different Oral History interviews after asking people to tell me their TS story in the Listening Tent.

With nearly twenty hours of recorded testimonies on record I am extremely grateful to those of you who gave up your time to talk and I am sorry that I was unable to record more TS stories – I literally ran out of time!

With an initial start up fund of £150 which bought the digital recorder I used to conduct the interviews and paid for my travel expenses (thank you to the North East Support Group for this – as an unwaged stay-at-home-mum I am very grateful for your support!) I am now in the process of putting together a report.

On the basis of this I will secure funding to widen this project and record the TS stories of all of you who wish to become involved. Unlike other ongoing TS research this project aims to reach those that are sometimes forgotten.

This blog is a record of how the project develops. Please feel free to offer your advice and ideas. Some of the posts will be about TS specifically, others will focus on the pros and cons of conducting research at a grass-roots level.

I welcome input from everyone!