The bigger picture
When First Person Plural was established in 1997, pre wide use of the internet, the isolation was enormous for anyone who had multiple personality disorder (MPD), as DID was then known, or worked with MPD clients. The USA-based International Society for the Study of Trauma and Dissociation (ISSTD) formed in 1984 under the name of the International Society for the Study of Multiple Personality and Dissociation, changed to the International Society for the Study of Dissociation (ISSD) in 1994 and then to its current name in November 2006.
The direct links between early childhood trauma, attachment and dissociation that we see today was slowly evolving. Neural imaging and the connection between brain development and DID was in its infancy. It was still considered unsafe to leave two people with MPD together unsupervised! In the UK there was a small group of people who had ‘accidentally’ come across their first DID client and knew the way they were working with them was often at best a holding place and at times seemed to make things worse. The subject was often surrounded by fear mainly through a lack of understanding and knowledge. Several of these therapists formed the UKSSD, a component group of the ISSD and when the European Society for Trauma and Dissociation (ESTD) was established in 2006, this became the ESTD-UK network. First Person Plural, ESTD – UK, the Trauma and Abuse Group (TAG) and the Ritual Abuse Information & Networking Support (RAINS), have been pioneers in getting this subject better understood in the UK with their individual and collaborative training, support and supervision for therapists becoming established. In 1997 this was the climate in which FPP started their work.
Now in the 21st century these pioneering organizations and many of the individuals involved at the start continue to work together. Their tenacity and courage speaking out on a subject that was regularly met with disbelief and ridicule has played a significant role in establishing today’s improving level of understanding of complex dissociation. We may still have a long journey ahead but reflecting on where we have come from, these pioneers, including First Person Plural, and their continuing efforts give us a much more fertile ground for present and future work being undertaken in the UK.
First Person Plural’s early days
An independent newsletter for people with MPD, ‘Collective Consciousness’, ceased publication in 1997; it had been a valued resource for those who had been fortunate enough to ‘stumble across it’. To be able to read about others who had multiple personality disorder, first hand experiences of trying to get through a day, manage the dissociative experiences that make living with MPD so complex and at times hard, helped to break the isolation. With the news in what was to be the penultimate edition that it was ceasing publication Kathryn Livingston put a letter in the last copy asking anyone who was interested in keeping a newsletter going to contact her. Fortunately several people did and this group founded First Person Plural. Initially we were just going to keep the newsletter going, written mostly by survivors for survivors.
First Person Plural Volume 1: Issue 1 July 1998 appeared and a quarterly newsletter has continued to date. These newsletters offer a history of the development of the growing awareness about dissociation, training, courses and survivors speaking at conferences. Copies are archived on this site and offer a resource and, for some people, act as a grounding-tool that is readily available. The newsletter’s current title ‘Rainbow’s End’ was selected in 2002 after members suggested what they would like it to be called. FPP was established as a membership association and remains so to this day. During the first year there were 57 members and this number has steadily increased. The main focus of FPP’s work is to benefit those affected by a complex dissociative disorder. Becoming a member is one way in which people can support our work.
Education and training
In 1999 three FPP members ran a workshop, ‘Swings and Roundabouts’ at the International Society for Study for Dissociative Disorders – UK conference in Manchester. Up until this landmark event dissociative survivors roles at such conferences, if they were involved at all, was to disclose their own histories. First Person Plural’s workshop was well attended and provided many delegates with their first experience of learning from survivors as ‘’experts-by-experience”. Graphic descriptions of abuse were not used as we recognised from the start these are not needed to convey the necessary information and understanding. They also have the potential to trigger and/or traumatise participants. The approach used at FPP’s first workshop was well received and has helped to shape our method of sharing information and supporting others, including survivors and professionals, allowing them to gain a better understanding of this subject.
We believe knowledge is empowering and is best achieved through respectful, structured, inclusive and shared learning.
Our strong belief in collaborative working is evident throughout several partnerships but is best demonstrated in our continuing work alongside the ESTD-UK to develop and deliver foundation and post-foundation level training courses on Working and Living with Complex Dissociative Disorders.
A major development was our first ‘Members Open Meeting’ held in 2000. These are governed by groundrules which were originally written and agreed at that first meeting by those attending. These are revisited and agreed anew at each subsequent meeting. Twice yearly meetings are held at various venues. The format for these meetings include structured (e.g. with a speaker) and informal activities (e.g. crafts like bead or card making) led by members. Inclusion, safety, empowerment and enjoyment while being with others who really do understand are the main focus on these days.
Our continuing service developments now includes responding to email enquiries; an online mutual support forum for our full members and most recently the establishment of pilot face to face mutual support groups in Norwich.
First Person Plural approached Mind in 2003 querying their lack of a booklet on dissociative disorders in their Understanding…. series. As a result we were commissioned by them to write this booklet demonstrating a good example of our collaborative working as it could be disseminated more widely and effectively through Mind’s reputation and networks. The booklet has been used by a very broad audience, including 1000s of copies distributed by FPP. It is unique in offering a comprehensive introduction to this subject at a level both survivors and professionals respect and share.
Our project to produce an information and training film started in 2010 to assist in meeting the increasing demand for our quality training; a DVD has enabled us to make this more widely available. Gill Sandell from Serious Media, a company used to working sensitively with complex subjects was commissioned to produce this resource. Sue Richardson, Remy Aquarone and Mike Lloyd were invited to be part of this project. Remy and Sue’s years of experience in the private sector and Mike’s work in the NHS ensured a balanced, expert perspective. This was complemented by the experts-by-experience perspective of Kathryn, Melanie and Oriel, long standing FPP members.
The film, ‘A Logical Way of Being’ was launched in July 2011 and has been widely acclaimed as yet another milestone in the development of dissociation awareness, producing an educational and training resource that is used extensively in the UK and internationally. The ESTD provided two educational grants towards the initial production and subsequent subtitling in five European languages. It was recognised by an ISSTD Audio Visual Media award.
Over the next two years FPP organised many free viewings throughout the UK catering for audiences of up to 250. The invited audiences were from every walk of professional life, survivors and their families and the evenings were supported by those involved in producing the film to answer follow up questions.
In 2013 a new project to produce a follow-on resource using the same media was started. ‘No Two Paths the Same’ was completed and had its first official viewing at the 2014 ESTD conference in Copenhagen where it was well received. Funding for this project included another educational grant from ESTD, a small grant from Truemark Trust , individual donations and re-investment of income from the first film. Gill was again the producer with the original six people and Paul, a supporter of someone with DID, featuring on the film. The film covers the three stages of therapy, stabilisation, trauma work and consolidation and integrated living demonstrating, while never linear, they offer a structure to work within. Paul’s chapter on his role as a supporter has been widely appreciated as there remains very little available for this group.
An example of the way this film is used is as part of training seminars with each chapter forming the basis of a session; therapists use it in peer support groups in a similar way. It offers a resource that is supportive of more in-depth learning.
Research, campaigning, policy making and the media
FPP has been instrumental in many initiatives that have brought about direct or indirect change and been influential in others that, at the very least, have added dissociation to their agenda. In 2002 FPP attended The Survivors Trust (TST) inaugural meeting. Kathryn became an elected committee member in recognition of her expertise in dissociation and played a role in its early development as honorary secretary. TST is recognised as a partner in helping Government departments to develop their policies and strategies for addressing sexual violence. FPP provides specialist input on any strategies or policies which require an understanding of complex dissociation.
In 2002 FPP responded as an organisation to the government’s consultation paper on Suicide Prevention and was one of the voices that helped the national Strategy for the Prevention of Suicide to focus on abuse survivors as being a high risk group.
In 2005 Kathryn, representing FPP, became part of the team working with the Dept. of Health and National Institute for Mental Health England’s “Victims of Violence & Abuse Prevention Programme”. Her specific role was to advise the programme team relating dissociative issues. This work was completed but the outcomes did not get published until much later.
Also in 2005 FPP’s response as a stakeholder in the consultation for the National Institute for Health and Care Excellence’s (NICE) PTSD treatment guidelines helped to ensure that these acknowledged the treatment recommended for PTSD was not recommended when the primary diagnosis was a complex dissociative disorder, such as DID.
FPP is represented on the ESTD-UK research group and is consulted in the design of research projects. Research proposals seeking participants are distributed through our membership if deemed appropriate.
FPP has made contact with various MPs and has raised an awareness of the need for longer term therapy for people with complex dissociation.
FPP is a member of The Survivors Alliance, formed in 2014 and has a place on their Steering Group. The Survivors Alliance is a national networking and lobbying forum established for the purpose of maximizing the number of survivors of institutional and organized abuse that have effective informed representation and support in relation to the national Independent Statutory Inquiry into Child Sexual Abuse.
We have been approached by individuals involved in a variety of art projects seeking our advice and consultation on their portrayals of dissociation and complex dissociative disorders. E.g. a second year puppetry student at Royal Central School of Speech and Drama devised a piece called Frag.men.ted.
In 2011 and 2013 we were involved alongside other individuals and groups in the Campaign for Recognition & Inclusion of Dissociation & Multiplicity – led by the Paracelsus Trust. A book “Living with the reality of Dissociative Identity Disorder” published by Karnac as a follow on to the 2013 Campaign included contributions from several FPP members.
Over recent years the Government has made a great deal of change in the Welfare Benefits system. As many of these changes affect those who are on illness and disability benefits because of their complex dissociative condition First Person Plural has involved itself in relevant consultations e.g. Personal Independence Payment. We have also kept up to date with changes in order to support our members and others as much as is possible. This includes being an organisational member of the Benefits and Work website and through this giving our members’ access to their excellent publications and guides.
FPP has contributed to articles about complex dissociation in mental health publications, e.g. “Mental Health Today”, other health magazines e.g. Holland and Barrett’s – “Healthy” and “Disability Today”, newspaper articles, radio and TV i.e. “4 Thought”.
As one of the longest established organisations specializing in complex dissociative disorders in the UK First Person Plural has achieved much since 1997. Our collaborative ethos has enabled FPP to draw on a wide range of expertise from both professional and experts-by experience perspectives. This approach strengthens our work and has earned us recognition and respect which we intend to carry with us into future developments.