This project was recently shortlisted for a grant application for a study tour exploring alternative approaches to mental illness. Although unfortunately unsuccessful, there has been considerable interest and excitement from the Multiple community as well as others in mental health and arts. So I’m sharing the project outline because I feel confident that it will find a ‘home’ sometime soon. It may be modified or broken into smaller projects, perhaps more done online than in person to reduce costs (in person has a special depth, safety, and connection though, if I can arrange that). There will be some funding somewhere for it when the time is right.
Having just completed my huge project with the South Australian Mental Health Commission – the initial state wide consultation for the development of the Strategic Mental Health Plan, I am confident I have the skills to undertake a project of this sensitivity and magnitude. More than that, I am passionate about what can emerge as part of a process like this, that listening and understand and connecting are in and of themselves powerful acts that can be part of growth, healing, and life.
Project Aim (my goal)
To explore the in intersections between mental illness, mental injury, and identity, through the experiences and understandings of the Multiple community.
This is a highly diverse community including those formally diagnosed with Dissociative Identity Disorder DID (formerly Multiple Personality Disorder), those who self-identify as experiencing multiplicity, and those with different frameworks and understandings such as spiritual possession. People’s experiences range from severe mental illness, poverty, and impairment, to multi-millionaires and founding directors of organisations. It is the perfect community for exploring how diversity and suffering intersect.
Why is Multiplicity an identity – even a ‘super power’ for some, but a catastrophic disorder for others? What role does diagnosis, self-identification, the way we name and frame difference and suffering, and social visibility play in people’s capacity to function? Multiples have a great deal to teach us about the way we approach the human condition, especially diversity, suffering, freedom, visibility, and identity.
Massively misunderstood, stigmatised, under-resourced, and mis-diagnosed, the Multiple community is largely invisible and difficult for researchers to access. I was diagnosed with DID in 2007 but have since recovered: I no longer meet the diagnostic criteria around impairment or distress but still live as a Multiple. I founded the Dissociative Initiative, an international project, and am out about my multiplicity in my public blog, personal, and professional life. I have rare access to this community and deep insight into the challenges, opportunities, and diversity within it.
Project Description (background and how I’m going to do it)
What is Multiplicity?
Dissociative Identity Disorder (DID) is considered “the most severe and chronic manifestation of dissociation”. (according to the ISST-D) Formerly called Multiple Personality Disorder, the experience of having more than one self is sometimes called Multiplicity, Plurality, or possession, depending on the context and speaker. For the purposes of this application ‘Multiplicity’ is being used as a neutral term, independent of theoretical or clinical frameworks around cause or cure. I will also use identity first language Multiples as that is my preferred term.
There is significant controversy about the legitimacy of the diagnosis of DID despite its inclusion in the DSM and ICD. As a result, those who struggle with these experiences face huge barriers to access support services and resources. Additionally a culture of fear and voyeuristic fascination mean most people with the diagnosis keep it secret or experience harm and discrimination with costs to housing security, access to education, relationships, employment opportunities, and parental rights.
Who am I?
I was diagnosed with DID in 2007 following a year long struggle with a psychologist for diagnostic clarity. My story is unusual in that most people with dissociative disorders spend many more years in the system and accrue many more misdiagnoses. For myself the diagnosis and treatment triggered such despair and decompensation that I began a decade long search for useful therapy, research and information from a variety of perspectives. A study of multiplicity has turned into a study of the human experience, touching on neuroscience, philosophy, psychology, art, and many other disciplines.
Through this process I have painstakingly constructed my own understandings of what multiplicity means to me and how I engage it. I no longer meet the diagnostic criteria for DID but remain Multiple – finding myself living in a linguistic gap. I have experienced trauma and been diagnosed with PTSD, and my experiences include instances of homelessness, poverty, domestic violence, bullying, and caring for suicidal family members. I also identify as queer, bisexual, and trans, and I live and act as an advocate across each of these communities. I am ‘out’ about my multiplicity and share my ideas and experiences through a public blog that’s been running since 2011.
I currently work full time wearing many hats (in true multiple style), including consultant, artist, and trainer. I have a queer partner, a baby, and an informally adopted 16 year old.
Why I have unique skills and experiences to conduct this project
I am a highly creative person and communicate through a variety of mediums – the written word, spoken work, and visual arts.
I have excellent facilitation and social research skills. I currently have a contract with the SA Mental Health Commission, designing, training, illustrating, and facilitating the state-wide consultation for the development of the SA Mental Health Strategic Plan.
I am intimately familiar with this community, and have a rare level of access. I founded the Dissociative Initiative and engaged stakeholders in South Australia to develop resources. Through the DI, I admin an online discussion group for and about multiplicity and other forms of dissociation, which has 1,300+ members. I’ve also run a peer-based, face to face weekly therapeutic group through the Mental Illness Fellowship of SA for two years.
Why this hasn’t been done before
The Hearing Voices Movement has powerfully raised the visibility of a formerly invisible subgroup – people who hear voices but are neither distressed nor impaired. They have also campaigned for awareness of iatrogenic harm, ableism (assuming a state of symptom reduction and ‘normal presentation’ is the definition of recovery), and the benefits of supporting people to explore their own treatment options (including non-clinical) and develop their own frameworks to understand their experiences. One key idea has been that perhaps distressed voice hearers have more to learn from the experiences of non-distressed voice hearers than from people who have never heard voices. Another has been that fear, shame, and secrecy strongly contributes to the likelihood voices will be or become distressing.
The Multiple community lacks the coherency, visibility, and voice of the Hearing Voices Movement. There are considerable parallels in struggles and recovery but with a backdrop of disbelief and denial. Massively misunderstood, stigmatised, under-resourced, and misdiagnosed, the multiple community is largely invisible. We appear in a few biographies, as part of trauma conferences in clinical mental health services, hidden in sub-reddit threads and private yahoo groups, as part of deliverance or possession religious ministries, and sporadic services and organisations worldwide.
An even more invisible sub community of Multiples are those who would be diagnosed as ‘other specified’ because their experiences of multiplicity fall short of the diagnostic criteria of DID. Sometimes termed ‘medians’ in self-help groups and alternative communities online, research suggests these people’s experiences are actually more common than DID, yet they appear in almost none of the literature, services, or resources, and most lack even a language or identity signifier to express their unique experiences.
Why it’s so important
There is tremendous suffering and impairment currently being attributed to multiplicity. That someone people are able to live well with multiplicity suggests factors other than the experience itself are relevant.
- What are the mechanisms of harm?
- Is there more than one sub-type of multiplicity?
- Are the key issues related to other risks such as poverty?
- Are the treatments or conceptual frameworks relevant?
- Or the social context?
- If ‘recovery’ from DID is a reduction in distress and impairment rather than a cure and return to ‘normality’ ie single identity, what are the determinants of recovery?
- What does multiplicity look like and how should we talk about it for those people for whom it does not ever meet the criteria for a disorder?
This is relevant not only to those in the Multiple community but has significant implications for our understanding of mental illness, psychological injury, disorder and diversity across the spectrums. When is something an illness to treat, an injury to heal, a disorder to recover from, or diversity to understand and embrace? If an experience meets more than one of those criteria simultaneously, what language should we use and how should we engage it?
There is also tremendous ambivalence and mixed experiences around diagnosis, clinical treatment, community reaction, and the response of educational settings and workplaces to Multiples. When does this work well and when does harm happen? How can we better support Multiples and reduce harm?
If Multiplicity can exist without being a disorder, does that apply to other conditions? If we can support people towards healthy multiplicity, can we also support them towards healthy Bipolar, or healthy Borderline Personality Disorder? Are there other linguistic gaps for describing the experiences of people who remain diverse but not impaired? Is a continuum of illness/health the most useful tool for framing people’s experiences? If not, what other frameworks and language are people finding helpful? What are our best practices for treatment, recovery, advocacy, visibility, community, and inclusion?
Exploring the context of multiplicity and the intersections with related experiences
Multiples intersect every level of community and socio-economic group, often unaware of, or secret about our multiplicity. We have a strong overlapping presence within and similar experiences to many other marginalised communities such as
- The Gender and Sexuality Diverse communities: diverse sexuality and gender identity between various parts are common for multiples
- The Autism community: autism and multiplicity are commonly co-occurring
- The Disability and Chronic Illness communities: many people with multiplicity also have physical disabilities or chronic illnesses (‘spoonies’)
- The Trauma and Recovery communities: there is a high level of experiences of childhood trauma and neglect for people with multiplicity, and very high co-morbidity with diagnosis of Posttraumatic Stress Disorder, to the point that some clinicians believe a diagnosis of PTSD is a pre-requisite for one of DID. Multiples may also be at much higher risk of trauma in some situations.
- The severe and profound Mental Illness and Personality Disorder communities: there is high level of co-morbidity with diagnoses such as Borderline Personality Disorder, and research suggests high representation of DID in inpatient populations although often present under other diagnoses. Issues such as access to care, respite, housing, and work are likely to be similar, and institutions such as shelters are likely to be interacting with Multiples regularly.
- The Hearing Voices Movement and Psychosis communities: some people who hear voices find the most useful approach is to understand them as parts, some people hear voices as part of their multiplicity. Several leaders in the Hearing Voices Movement have been diagnosed with DID, many more support people with experiences of multiplicity in their hearing voices groups worldwide. Schneiderian First Rank Symptoms, originally developed as a tool to diagnose forms of psychosis, has been found to be more prevalent for people with DID than Schizophrenia. There’s a significant overlaps in these populations.
Like many of these communities, there are divisions and struggles around key understandings of the experiences and ideas of cause, cure, or recovery. There is at times a profound conflict between the need for supports and services, the desire for frameworks to make meaning of experiences and give validation to identity, and the experiences of iatrogenic, social, and spiritual harm.
However there are also people who live openly with their multiplicity, with experiences ranging from crisis, poverty, and homelessness, to multi-millionaires and founding directors of organisations. (This is only one dimension of people’s experiences. It may be that there is a similar level of pain and distress no matter the socio-economic strata, or that there are advantages and good aspects to the less ‘apparently successful’ lives and hidden costs experienced by those deemed to be ‘high functioning’ and ‘less impaired’.)
There is little consensus about why people have such diverse experiences or how to best support those who are suffering. Some find mainstream mental health treatment helpful and others find it destructive or irrelevant, and draw on other resources and models. Some feel that multiplicity is a form of neurodiversity (akin to the approach of autism activists), that the primary distress is caused by stigma and discrimination (akin to the social model of disability) or that like homosexuality it is a natural variation that should be removed from the DSM. The nature of multiplicity is that there is little community consensus about this, and frequently individuals themselves do not agree among their own parts on the framework to understand multiplicity or the best approaches for it. It is a perfect community for exploring diversity.
How I’m going to undertake this project
I will reach out to three main groups; people with a personal experience of multiplicity, people who support or resource people with multiplicity, and people who can speak to the key 6 identified overlapping communities. I will draw upon the principles of Grounded Theory and Participatory Action Research, conducting semi-structured interviews (conversations with a focus) and collaboratively exploring the themes, language, and understandings that arise. I will use my facilitation skills to sensitively explore experiences, beliefs, and language in the context of capacity to function and experiences of distress.
At the same time I will be undertaking a Social Practice Art Project, engaging the interviewees directly in the creation process of original artworks. For some this may be the identification of a key theme, quote, or experience that I will illustrate, for others they may contribute more directly to the creation of the artwork.
People with a personal experience
I aim to interview people across a range of experiences and socio-economic status, including carers, family or friends, or in groups where appropriate.
People who resource Multiples
I aim to interview people who have founded or work in clinical services, alternative communities, and peer based resources such as online support groups.
People in key overlapping communities
I aim to interview people who can speak to key frameworks, struggles and language used to explore identity, diversity, and disorders within the 6 key identified communities.
I have identified my wishlist of people, communities and organisations to contact. Some I have a good relationship with, some have already invited me to be part of events or gatherings, others I have yet to contact. It may be that I discover other individuals or communities through this process I am not currently aware of and I might be able to include visits and interviews with them in my trips.
Wishlist of Contacts with Experience Personally or who Resource the Multiple Community
- Alicia, lived experience
- Eva, lived experience
- Stephanie, lived experience
- Samira, lived experience
- Estraven, lived experience
- Jim Bunkleman, partner of (deceased) multiple. Founder of Healthy Multiplicity/Plurality cohort: wants to organise a gathering of Multiples from the online resources and blogging community. Most are not ‘out’ in any other setting and very difficult to contact.
- An Infinite Mind aninfinitemind.com Peer based organisation behind the Healing Together Conference on DID. Also involved in a documentary about DID.
- Noel Hunter: Lived experience activist, alternative mental health community, trauma community. Author of Whose treatment is this anyway? Helpful and harmful aspects in the treatment of dissociative identity disorder phenomena
- Jade Miller: lived experience activist and skilled blogger, author of Dear Little Ones about care of child parts in a Multiple system.
- California: (details private)
- Fiona, lived experience
- Lisa, lived experience
- Carolyn Spring, lived experience of DID, founder and director of PODS, Positive Outcomes for Dissociative Survivors, self funded charity offering training and resources.
- Dr Rufus May, member of hearing voices network, works with people with Multiplicity and Voices as parts. Dissociation is real Article
- Dr Eleanor Longden, formerly diagnosed with Schizophrenia, TED speaker, understands her voices as parts.
- Rachel Waddington, hearing voices movement, alternative mental health, lived experience activist, speaker and trainer
- First Person Plural, peer-based association
- The Pottergate Centre, clinical treatment team for people with dissociation and DID
- Ruth, lived experience
- Tyrone, lived experience
- Melinda, lived experience
- Kallena, lived experience
- Suzanne, lived experience
- Jenny, lived experience
- Former members of face to face support group, Bridges
- Daniel and Savannah: lived experience News clip
- Prof Warwick Middleton MB BS, FRANZCP, MD Director of inpatient Trauma and Dissociation unit at Belmonte Private Hospital, Queensland. Also a member of Advisory Panel for Blue Knot Foundation (formerly Adult Survivors of Child Abuse)
- Isst-d, International Society for the Study of Trauma and Dissociation
- Ron Coleman and Karen Taylor, hearing voices movement, recovery house founders, work with some people who understand their voices as parts
- Voices Vic – peer-based organisation with 2 face to face Multiplicity support groups facilitated by Sue lived experience activist.
- Sue,lived experience (see above)
- Dr Cathy Kezelman MBBS (Hons), lived experience activist, director and president of Blue Knot Foundation, director of Mental Health Coordinating Council
- Randy, lived experience
Wishlist of Contacts in Key Overlapping Communities
Many of those in the above wishlist have these experiences, which will be explored if they wish in conversation.
Yet to be created – members of these communities with no direct experience of multiplicity. This may not be needed, or may not take the form of interviews but instead a literature review or other form of consultation. To be determined following the first round of conversations with people with personal experience.
How will this Project Benefit Australians Affected by Complex Mental Illness? (what we will get from it)
Living as a group presents unique challenges and opportunities, and an unusual relationship with external groups such as in educational or workplace settings. Multiplicity can be the most painful, isolating, destructive force, but for others it is the salvation, a super power that overcomes adversity and harm and brings life and health. This extreme dichotomy may be true even of the same person at different times in their life. A better understanding of the relationships between illness, injury, disorder, and diversity will be helpful in a number of ways for Australians affects by complex mental illness.
Creating different frameworks for people to process their experiences
Exposure to a variety of more nuanced languages and frameworks to explore health will support people to examine the assumptions between the ‘mental illness’ clinical terminology, to be more free to use the words, terms, and understandings that best fit their own experiences, and to be more confident to explore the complex relationship between suffering and health in their own lives.
The use of art and beauty to express complex ideas
Visual art is a universal language, going beyond language barriers and also beyond that which is difficult to put into words. Art allows us to explore, express and communicate the intangible, unthinkable, and unbearable. Beauty gives us strength and courage to look at things we’ve found too painful or confusing to engage. Art is a powerful medium for communicating complex ideas and bringing the private and taboo into community.
The creation of community via an exhibition
The process of being involved in this research and exhibition in itself will draw together a diverse community of vastly different people with incredible wisdom, experience, and knowledge to share. Some are currently extremely isolated and almost all operate in ‘silos’, only interacting with other people who share their particular language, frameworks, and beliefs regarding multiplicity. This will be a significantly different experience allowing people to connect across intersecting lines of diversity in a respectful and safe way, allowing greater knowledge exchange, richer understanding of diversity, and ultimately a connection of the specific back to the human condition.
The introduction to the wider community of more complex and useful narratives around diversity, disorder, illness, and injury
Sharing the results of this research in community-accessible formats through art, talks, writing, and resources will allow the learnings to go beyond this smaller community and reach back out to everyone. These themes and questions have broad applicability in mental health, community services, human resources and beyond. These are important questions and narratives to share.
The reinforcement that severe mental illness can be understood and responded to in many different ways
Opening up the conversation about how we understand and respond to those individuals who are most suffering, disadvantaged and impaired and moving beyond the reductionist one size fits all treatment and cure models will restore dignity both to those who have often been treated as the embodiment of their disorders and to those who have tried to understand and offer support from outside. Finding shared humanity and diversity is valuable for all people.
How will the Results of this Project be Disseminated?
I will be creating a series of original artworks for exhibition and online display. I am a hybrid artist, that is, my artwork is informed by other disciplines such as the sciences. My arts practice is strongly informed by my reflections on what it is to be human.
I am a Social Practice Artist, which means I work collaboratively with communities, using social engagement as my primary medium to create artwork in various formats. The social interaction is a key component of the artwork. I link contributions from people together in the creation of my artworks. In this instance the interviews and events I attend will form the material from which the artworks are created, using key concepts, quotes, and stories (with permission).
With sensitive handling, Social Practice Art is an incredibly effective way of engaging hidden communities, complex issues, and taboo topics. It supports the voice of people who are often ignored, and increased visibility of the experiences and ideas of those affected without having to expose them directly. I have successfully used this approach to create my artbook Mourning the Unborn, and exhibition Waiting for You, on the topic of miscarriage.
I am a skilled writer, poet, and accomplished blogger. I share on my personal blog at sarahkreece.com as well as guest posts for other organisations. I will write a series of personal responses for publication on the intersections of illness, injury, disorder and diversity with an aim to begin untangling these concepts and exploring the factors that are relevant to wellness.
I am also a speaker and trainer, I will create and deliver presentations about my learnings and the implications for individuals and services.
I will also use the learnings to guide the development of resources and language for the Dissociative Initiative, my international network, and to inform the structure of non-clinical peer based resources for other challenging experiences on the intersections of illness/injury/disorder/diversity.
You will be able to follow any developments through the DI newsletter. If you would like to be involved in this project, please contact me firstname.lastname@example.org or through Facebook. Suggested ways you can contribute:
- Volunteer for a conversation (Let me know if you prefer to be kept off this public wishlist)
- Invite me to conferences or other events relevant to this project
- Offer to sponsor this project or part of this project (I can forward a budget to you)
- Link me to other funding opportunities
- Offer mentoring for the social research or social arts aspect of this project
- Offer me resources such as a physical or online venue for presentations or exhibitions, or accommodation during travel
- Volunteer time to be part of a working group managing this project – this will involve tasks such as making travel arrangements, proofing grant applications, booking venues, hanging artworks, responding to enquiries.