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Disability Research Network e-Newsletter: December 2007
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Editor’s Comments:
Welcome to the 9th edition of the Disability Research Network e-newsletter (in association with the Research Institute of Health and Social Change, Manchester Metropolitan University and Breakthrough UK Ltd). I would like to thank all those who contributed to this edition. Please, remember to submit contributions for the next edition by latest 3rd January, 2008 so that we have the next edition on time. When submitting, please remember to use simple text version for easy accessibility. At times I have difficulties in accessing some attachments.
Once again, thank you for the wonderful support and wishing you a Merry Christmas and a prosperous 2008.
Best Wishes
Tsitsi Chataika
Coordinator’s Comments:
Please find below the 9th e-newsletter from this newly established but expandable network. Our aims are to provide informal, off the press and informative monthly details of disability research activities, which might be of interest to audiences including disability activists, organisations of disabled people, students, researchers, policy makers, families, practitioners and local authorities.
The idea for this newsletter emerged from discussions between the Research Institute for Health and Social Change, Manchester Metropolitan University (http://www.rihsc.mmu.ac.uk/) and Breakthrough UK Ltd - a social enterprise that draws upon social model ideas to promote employment advocacy, advice, support and training to disabled people (http://www.breakthrough-uk.com/). They encouraged us to share regular information from disability research, which might inform their work. This sharing and networking links into the aims of the Disability Studies Association and, we hope, will have broader appeal (http://www.disabilitystudies.net/). This network relies, obviously, on regular monthly input. What we would like from you, if you are interested:
The details of your institution and one contact person and their email address
Monthly commitment to provide us with BRIEF information (inc. related web links) about disability research activities you and your colleagues are involved through emails each month me (you will be reminded by email). This could be no more than a few lines – and no attachments – as we want to keep it workable, informal and relatively easy to read.
To provide details on such things as news on forthcoming publications;
conferences/seminars you are attending or hosting; funding opportunities of interest to disability researchers; news from local and national government; international disability issues; stories from research; ideas for research that you would like to explore with interested others; disability studies teaching materials and resources; links to new policy and user consultation, etc …
To provide in your email information categorised in terms of your institution e.g. ‘News from the Research Institute of Health and Social Change, Manchester Metropolitan University’; ‘Activities of the
disability studies team at University of Northumbria’.
To make the email simple text without loads of formatting for ease of putting together
To posit other ideas for developing the e-newsletter - perhaps a section on 'possible future research / funding priorities' which readers might be able to link into for funding bids.
We hope you are interested.
Very best wishes,
Dan Goodley
[log in to unmask]
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1. News From Manchester Metropolitan University, Research &Social Change
Contact - Dan Goodley ([log in to unmask])
(a) Critical Disability Studies Activities at MMU
We are writing to inform you of the new web pages for the research
group of the Research Centre for Social Change and Well Being,
RIHSC here at MMU -
http://www.rihsc.mmu.ac.uk/scwb/criticalstudies/index.php
The Critical Community and Disability Studies Research has particular
strength in the areas of community and political activism
with a strong focus on disability and other forms of marginalisation. On the pages you will find details of previous, ongoing and in preparation research projects, with contact names to follow up if you are interested in these projects. We hope you find the site and details of research activities of use.
Please do follow up the contact names if you require any
further information.
All the very best , Dan Goodley and Rebecca Lawthom, Co-Directors of
Research Centre for Social Change and Well Being
(b) MSc Psychology and Disability: Recruiting for 2008-2009
This one year FT / two year PT course introduces students to a whole
host of issues connected with psychology and disability studies. Taking a critical disability studies perspectives as a starting point, compulsory modules include:
+ Psychology of oppression and exclusion
+ A fair and just society
+ Disability studies dissertation
Optional modules include:
+ Community Psychology
+ Psychoanalysis and Social Relations
+ Counselling and Psychotherapy
+ Critical Psycholology
The current cohort includes students from the UK, Ireland, Germany,
Malaysia and Venezuela from a variety of educational and professional backgrounds. We also work with students who do not have background in psychology but who are interested in exploring disability studies and critical, community and transformative approaches to psychology. If you are interested in this course please contact the programme leader Rebecca Lawthom ([log in to unmask]).
(c) MMU involvement with the CORNWALL DISABILITY RESEARCH NETWORK, 2nd Conference, Cornwall College Opie Building, small and large lecture theatres, Thursday 29th November. Rural Disability Studies:
Kicking Postmodernism from Academia to Reality! Dan Goodley
presented MMU at this innovative conference.
(2) News from North West Disability Arts Forum, Liverpool
Contact: Billy Moon ([log in to unmask])
North West Disability Arts Forum is a Liverpool based Disability and Deaf Arts development agency. The most high profile event we do is DaDaFest. We also write a weekly newsletter with news about disability and deaf arts. If you would be interested to receive this newsletter, please reply to this email ( [log in to unmask]) with your contact details.Wednesdays are newsletter days: http://www.nwdaf.co.uk/news/
Contact Details
Billy Moon
Information & IT Assistant
North West Disability Arts Forum
T: 0151 703 2257
F: 0151 708 9355
MC: 0151 706 0365 / 0151 703 2256
A: 1-27 Bridport Street, Liverpool, L3 5QF
E: [log in to unmask]
W: www.nwdaf.co.uk
3. News from Anne James ([log in to unmask])
The invisible disability: A Personal Experience
When you are fit and well, unending tiredness is not something that you think about. You take for granted that you will replenish your stocks of energy and proceed to the next challenge: you assume that you will recover - you are only tired after all. If you suffer from M.E, (Myalgic Encephalitis) or CFS (Chronic Fatigue Syndrome) you give up all those certainties. Every action has to be weighed up against the consequences: everything you do could make you feel worse.
When I was diagnosed with ME in 2003, in one sense I was relieved. For months I had undergone tests and worried about what could be wrong with me. Now I knew, so I could get on with getting well. Wrong. There is no cure for ME. While it is rarely fatal (apart from the many sufferers who decide they cannot cope anymore and commit suicide) it is a debilitating and little understood illness. Some parts of the UK have better ME services - Scotland, for example, has much more support via the health service and other bodies -Wales is sadly lagging behind in this and groups are fighting to get it put on the agenda.
However, more research is now being carried out into the causes and the treatment of ME. It is accepted as a disability and it is acknowledged by the various health agencies as such. However, for the lay person, it is a bewildering array of symptoms, experienced by someone who was once (and this is usually the case), very active.
Part of the difficulty for sufferers is that unlike other illnesses we are required to explain the illness to family, friends and colleagues. Sometimes, if we are not in the very worse stage of the illness (where you can be bedridden or in a wheelchair) we look ok. We try to carry on with daily activities on the good days. We go to work (if we are lucky enough to make enough progress in managing the illness). However, we live in fear of a relapse that will take away all our security, all our hard fought progress, possibly our homes and our jobs. The symptoms are like having the flu for months. The muscle pain can be overwhelming, the headaches and nausea prevent normal activities. During bad spells, I am in constant pain, disorientated and faint, unable to put the correct words in the correct order or concentrate on even the simplest tasks. When I am tired or have pushed myself that bit too far, I am unbelievable clumsy.
I feel compelled to write about this invisible illness in order to foster greater understanding and in particular to help remove the constant need to explain the illness to all and sundry. It is invisible because when you are at your worse you at home ill unable to go out. People only see you when you are having ‘a good day’ or when you have rested and prepared for the meeting so that you can appear to be ok. It is bad enough to be ill without having to give progress reports and analyses to an often uncomprehending world. How many times has someone said, “I feel tired too”, or, “you have a middle class yuppie disease that just needs strength of character to get out of”. Believe me, if sheer will power could cure this I would be fit and well. Energy is at a premium with ME and the need to always explain and apologise when you are unable to do something is a huge drain on scarce resources.
There are many things that you can do to help yourself but they do not suit everyone or every experience of the illness. I have taken up gentle yoga that is tailed to my condition. I am having counselling from an experienced ME counsellor and I take supplements and use the Pacing method (trying to get all the days in balance and save energy when feeling well to avoid the book and bust of ME. I try to avoid stress, not easy when you have a demanding job that you are trying to keep. Every sufferer has to find a way through that suits them and this makes finding any cure even more difficult. What will help me could render someone else very poorly indeed.
My philosophy throughout all this is that it is not all doom and gloom. Without resorting to sentimentality and trite homilies I feel that there can be benefits to every experience. I have been lucky in many ways. I have some very good friends, neighbours, colleagues and family members. My GP has been supportive and encouraging from the beginning. I have received some good support through my workplace and from my boss. The problem is, this illness is long-term, and people get bored with the ongoing saga (I get bored with the ongoing saga too). This is another problem: how to cope with an illness that may never go away and needs to be managed day in day out? There is a continual need to bargain with every activity: if I go to work full-time (if you are as fortunate as I have been to make a 75% recovery at one stage), then I cannot have any social life. If I want to meet friends for a meal on a Saturday evening, I have to go to bed in the afternoon and ensure that
it is not a late night and that I can rest again on the Sunday. With ME you live in a ‘what if, land with no certainties or rules and you must constantly ensure that your energy levels are maintained.
But back to the good side. I am a better friend and more sympathetic person as a result of this experience. I have taken up new gentle hobbies to replace the active ones and have met new and interesting friends. I have learnt to accept help and to enjoy every little pleasure that comes my way. Hearing the birds singing in the morning and sitting with a purring cat on my lap all help me to realise that it is the small pleasures that make up a life not the big ones. I am improving – until this year I could not travel because it is too tiring and stressful and I can’t risk being very unwell abroad but I could manage short trips and visits to understanding friends and relatives. This year I went for a holiday to Venice, with no ill effects and had the most wonderful time.
I am the best I have been for 4 years and have found working a 4 day week has been a tremendous help. I remain as positive as possible, however, there needs to be greater understanding, more research and less rumour and myth about this devastating illness.
Contact Details
Anne James, BA (Hons), MA
Academic Administrator
Cardiff School of European Studies
65-68 Park Place
Cardiff
CF10 3AS
4. News from Christchurch, New Zealand
Spinal Essentials New Website!
A new website on Spinal Cord Injuries is now available in New Zealand, the website was developed through collaboration with the New Zealand Spinal Trust and the E-Learning Unit at Christchurch Polytechnic Institute of Technology.
'Spinal Essentials' is an introductory course designed to help people understand the anatomy of the spine, what the different medical terms mean and information about the issues that all people with a spinal cord injury have to face. The course has been designed to be interactive, with lots of graphics and features; there is also a quiz at the end of the course! There are also links to discussion boards and other websites concerned with spinal cord injury.
Visit Spinal Essentials at www.spinalessentials.org.nz to find out more and Bernadette Cassidy would be interested in feedback from the Discussion List about the website.
Contact Details
Bernadette Cassidy PhD
Information & Design Team Manager
Allan Bean Centre Library, Private Bag 4708,
Christchurch, New Zealand
Tel: +64 3 383 9492 Fax: +64 3 383 7500
Email: [log in to unmask]
Website: www.burwood.org.nz
5. News News from DIPEx Research Unit, University of Oxford
Contact: Sara Brookes
I am currently working on a module for the DIPEx website (www.dipex.org)
which is a database of personal experiences of different health issues.The module is (currently) called Living with Autism and I have interviewed 40 parents of children/adults on the autism spectrum and twenty people aged between 16 and 83 on the autism spectrum.The interviews have been filmed with people's permission and video clips from the interviews will be used on the website to present a picture of what everyday life is like for parents and people with autism. Summaries of the key issues emerging from the interview will be included covering topics such as getting a diagnosis, everyday life, going out, information, support, employment, relationships and so on. The website is currently being completely redesigned and will be relaunched next spring. If anyone wants further information they can email me at [log in to unmask]
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NB: A copy of this Newsletter is available at:
http://www.breakthrough-uk.com/DRN.shtml
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END OF NEWSLETTER
For any further contributions and information contact:
Tsitsi Chataika (PhD) - Editor
Email: [log in to unmask]
Tel/Fax: +44113 293 8749 or +4479 03859902
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Tsitsi Chataika (PhD)
Tel/Fax: 0044(0)113 293 8749
Mobile: 0044 (0)79 03859902
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