This was my first experience of creative co-produced academic research. We’ve been looking at improving access to dentistry for adult survivors of child sexual abuse. It was something I’d really wanted, had initiated and pursued over a long period of time recognising the role of academia to be a bridge between communities and services. Research equals credibility for communities like ours that have been institutionally overlooked, pathologised and omitted from diversity discourses. Our credibility as knowers of our own experiences is not enough to make change to clinical practice – frustrating but currently true.

After some initial team discussions, we focussed our project activity on work with other child sex abuse survivor activists to understand and articulate the problem and think about the change we want to see. What is currently inaccessible about dentistry? How do we remove the barriers we collectively face?

Because the seed fund is a relatively small pot of money, we wanted to do one thing well. We prioritised making space for those conversations without having to sanitise them or problem solve straight away. Its complex territory – as survivors we are angry about the lack of access across different services – a lack we have internalised as our own individual deficit. This internalised stigma looks like “I’m rubbish at going to the dentist” or “I’m a coward” or “I can’t cope with normal things like normal people”. As we wake up to the institutionalised barriers we face, the failure of health services to be accessible or inclusive to us – we need space to vent, to feel and express. We need to do this without hearing that clinicians are “doing their best” or  “feel guilty” or “mean well”. We know that – this isn’t about individuals – it’s about systems that are not working for survivors or practitioners. I always think how horrendous it must be to be my dentist – to treat someone so obviously traumatised – to say things that are intended to help and watch as the appointment spirals further and further out of control…

Getting this work through a medical ethics committee was not straightforward. They raised frustrating questions about doing work with CSA survivors. Work that was initiated by a CSA survivor activist proposing to work with other survivor activists who do this routinely and professionally. Their feedback “Is this work too sensitive to do?” Too sensitive for who? And what’s the alternative? Do we just keep everything the same even though it’s not working? Who is better placed to make change than our own community? How can we improve access if we are not “allowed” to talk about it? It’s hard not to feel silenced. Gaining ethics consent involved challenging this and other outmoded patronising paternalistic assumptions that are routinely made about our community. Assumptions that are part of the wallpaper in institutions that have failed to serve us. The information sheets, consent forms and standard ways of compensating “participants” – so many practices to unpick just to start the research.

Ethics navigated, we hosted a glorious series of creative workshops including art, scriptwriting and creating TripAdvisor reviews for dentists to explore key themes such as stigma, power,  trauma-informed concepts and the social model of disability. The sessions were exciting, revealing and raucous – fizzing with creativity, purpose and intelligence – a million miles from the “sensitive” stereotype the ethics committee painted us as. 

We co-produced a poster aimed at highlighting some of the challenges our community faces accessing dentistry, encouraging survivors to use support advocates to attend appointments. You can’t get away from the fact that this is still us managing a problem that is not ours. But we needed to produce something authentic and realistic. We couldn’t say “Talk to your dentist, they will help” because most dentists don’t know where to start. We are at the tip of an enormous iceberg of work that needs to happen to make meaningful change. Work like this needs huge investment and buy in. 

Alongside the positives and achievements, there have been some challenges. I’m struck by the enormous generosity and allyship of the academic team. No academic time is supported through the seed funding leading to the inevitable pressure of unmanageable workloads and a feeling of incompletion eg. We have a huge amount of rich data and no time to do anything with it. 

Another challenge relates very directly to the shared survivor experience of institutional betrayal. I am hyper-sensitised to unequal power dynamics no matter how collaborative the relationships. Feeling overpowered and out of control is THE biggest trigger for me and many survivors. These feelings rear up in me engaging with institutions like universities. They operate on a very subtle level and are a key challenge for co-production in this space. This, rather than talking about our experiences, is what many of us are “sensitive” to (a nuance not recognised by the ethics committee).

Similarly, we are now at the stage of considering outputs for the project. A journal article has been proposed exploring issues around coproduction, which I support – it’s interesting and necessary. But I am here because I want to make change in dentistry for and with CSA survivors. I want to shout about what happens for us from the minute we think about making a dental appointment: the unnavigable systems; the unwelcoming environment; the re-traumatising practices; the terror we endure; and the defensiveness we face when we ask for different treatment. I want to write about the courage and wisdom in our community, the small tweaks that make all the difference, the humane communication we need that is so trainable, our rights to feel met by services that have institutionally betrayed us.

I want to write about the win-win and the way it could so easily be so very different.

Fin out more about Improving Access to Oral Health Services for Adult Survivors of Child Sex Abuse (CSA).

It is known that survivors of child sexual abuse have poorer oral health than the general population. This is from a combination of difficulties maintaining personal oral health routines and attending dental practices. This study included survivors, psychologist, sociologist, dentist, scientist among its team, and also had the input of service providers and dental professionals in the Critical Friends Group.

We undertook a series of coproduced creative workshops to explore how dental services can be improved for adult survivors of child sexual abuse. Additionally, separate Padlets were set up for the research team and the workshop participants with the study leads Nilu and Viv having access to both. These Padlets encouraged everyone to share ideas and reflections throughout the process, and to upload any outcomes from the workshops or anything else they wanted to share.

This research followed on from an Ideas Exchange project funded by Brigstow Institute. In that study we held two focus groups – one with dentists and one with survivors to explore ideas. Findings were shared via a webinar on 22 November 2021 to which over 100 people signed up from across the UK.

Building on this work, we applied for seed corn funding in 2022 from Brigstow to undertake five coproduced creative workshops with survivors. We were awarded additional funding from the Bristol and Weston Hospital charity allowing us to increase the number of workshops to nine – five creative workshops, and four focusing on producing outputs. A trained counsellor was present in all the creative workshops to offer support during, as well as being available after, the workshops for participants.

We purposefully sampled four Survivor Activists who were used to talking about the impact of CSA through Viv’s connections, three females and one male. Unfortunately, our male participant withdrew after contracting Covid.  We were also joined by Becky White, a postgraduate student who supported the study delivery and data analysis.

The workshops were planned to be a mix of academic and creative content. Framing key survivor experiences in an academic landscape and sharing the terminology and approaches to familiarise survivors with an academic presentation of lived experiences.

The first workshop was on Autoethnography – being able to tell your own story. Patricia Neville, our team sociologist, presented on this and Viv encouraged everyone to write their own stories of their mouths, ‘how the mouth experienced the dentist’ and what a perfect appointment might look like.

Our second workshop was on Stigma and Patricia Neville spoke about stigma through a sociological lens. The workshop was run by the fantastic artist Sejal Chad, who helped us all explore the parts of us that are allowed into the dental space, and those that are not welcome and must be left behind.

The third workshop explored Power. Becky White delivered the academic presentation, whilst the creative element was run by activist Dolly Sen, who encouraged everyone to write TripAdvisor reviews for their dental appointments, to subvert power dynamics in dental spaces.

Workshop four explored Models of Illness, Patricia Neville presented on the medical and social models of health and illness. Anita McCullen ran a script writing workshop where the characters encountered in dental settings came vividly to life – receptionists really featured strongly in people’s scripts.

Workshop five was the last of the creative process workshops and brought the focus back to Coproduction with the presentation delivered by Nilu Ahmed. Viv led the session encouraging the team to think about what our output would be. We brainstormed from grand notions of what we wanted to create – from operas to training programmes –  before considering what was practical and achievable in our time and budget. The group decided on a poster that could be sent to all dental practices.

In workshop six we invited an artist to meet with us to talk through the ideas the group were having. The group shared the journey so far and the artist was given access to the Padlet where ideas and outputs from our workshops had been uploaded. She produced draft mock ups of posters which we reviewed in workshop seven and fed back. As she finalised the poster, in workshop eight we reviewed the information sheet for the study. All participants told us that if they had only received the study information sheet, they would probably not have taken part. It was their relationship with Viv that had been the deciding factor on being involved. So, we co-created a new, more inclusive information sheet based on the core information that survivors would want included in a study information sheet. The text was agreed on and sent to the artist. In workshop nine, we reviewed the final poster.

Our artist then went on maternity leave, and the final tweaks were undertaken by a new artist. We launched our poster and study information sheet on 22 November 2022 – exactly one year to the day after our webinar sharing findings from our Ideas Exchange project. We are excited to see what the coming year(s) bring for this work.

Find out more about 2022 Experimental Partnership Improving Access to Oral Health Services for Adult Survivors of Child Sex Abuse (CSA).

Dr Lesel Dawson and Dr Jimmy Hay presented their films to an audience of peers, academics, practitioners of film, and enthusiasts of cinema. The films were the product of a series of practice-as-research Brigstow funded projects that sought to explore if it is possible to convey the lived experience of grief, loss, and bereavement in a short film, by using the tools of filmmaking such as camera movement, shot length, focus, and editing. Their aim was to form an empathetic realization of embodied grief in fiction film. The team worked together to represent the lived experience of grief through the collation of a wide range of experiences. These films explored the extent to which narrative, sound, and cinematic techniques that foreground sensory experience could capture the raw experience of grief. The two films were Lost Property and Nothing Echoes Here. I entered the room, the researchers and the projects were briefly introduced by the academic lead for the Centre for Health Humanities and Science, then the lights were turned down and the first film, Lost Property began.

The film opened with the reverberation of sound throughout the room and the screen black. A cacophony of splitting wood, the rhythmic hammer of an axe head, and the coarse sound of sanding overlayed each other in an overwhelming discordance of noise that felt laden with emotion. Later, Lesel and Jimmy would discuss the manner in which people use labour to process grief, and that concept was palpable from the opening seconds of Lost Property. Images began to fill the screen, pairing up with the noises already heard, flitting from movement to movement, the cacophony taking its visual form. Until it slowed, faded, and was replaced by the rhythmic, methodical, almost gentle chopping of wood.

The film Lost Property is an exploration of some of the darker, uglier, and less represented forms of grief; what Lesel would later refer to as “disenfranchised grief”, that which is hidden away or not acknowledged. The film explores the dynamic of two women bereaving the loss of a husband and ex-husband. The film casts an exposing lens of the process of grief when it is mixed with hatred, anger, and jealousy. The first person we are presented with, Claire, who is the first wife of the deceased, is wrestling with the conflict between the grief she feels and the resentment she feels for the lost. This disenfranchised form of grief climaxed in a vehement outburst at the funeral, an accusation and attack against the second wife, Katie. This moment is presented throughout the film as a recurrent abstract flashback with an overlapping of voice and image that mimics the chaotic barrage of shots during the opening scene.

The grief is negotiated through the influence of the children, a recurrent motif across both films. Claire’s daughter suggests a gift of the father’s childhood toys to Katie’s daughter. The giving of this gift becomes a moment of discussion and strained-for closure between the two mothers. In this interaction, the film does not spare the audience the pain, discomfort, and anxiety felt by the women. Claire finally breaks through the uncomfortable civility with “I’m sorry about the funeral” a moment Katie instantly rejects with “Let’s not”. This develops into an impassioned argument of life, jealousy, and grief; displaying the manner in which our experience and our bereavement are never in our control as Katie states all she remembers of the funeral is the “smell of tuna sandwiches and you screaming in my face”.

Jimmy and Lesel discussed that a driving research question of this project was the attempt to present the process of grief in film in a way that does not simply utilize it as a narrative device, or a neat emotional shorthand to develop some plot. They believed this require a presentation of grief that challenges the notion of linearity in experience, and a presentation of grief-for-griefs-sake rather than grief to propel a larger narrative. They also believed it required a presentation of grief without the glorification and valorization that normally accompanies cinematic bereavement. Lost Property achieved this brilliantly.

The film enacted a form of narrative closure, with each woman processing their grief through a type of labour; Claire dismantling and removing the father’s former shed and Katie renovating and repairing the houseboat the couple used to live on together. Yet, in tandem with this potential closure, the film also presented the potential ugliness of bereavement from which there is little response or meaning to be attained. In Lost Property the viewer could witness that particular selfishness of grief, a product of a form of blinkering interiority in which nothing exists but your experience of anguish.

Lost Property was followed by the second film Nothing Echoes Here.

The film began with still shots of isolated objects cast in a cold blue light. A painting on the wall, a pair of slippers, an alarm clock, an empty bed. These images are suddenly replaced by the flickering flames of a campfire and a mother speaking to her children as they drift off to sleep, swaddled inside a tent. Morning breaks, and slowly develops with quiet shots of glorious sunlight falling through the vibrant green of the woods. There is a sense of disarming peace.

Nothing Echoes Here is a film about the locality of grief and the way in which memories are stored in spaces and objects. It examines the potential of space to cultivate grief but also the potential of space to offer one places of respite and freedom from memory and experience. Jimmy would explain after the film the central role of the non-familiar space, the wooded forest in which no echoes of the former life and the lost father can reverberate. The film contrasted the vibrant powerful green of the non-familiar exterior with the cold blue of the interior domestic space and site of grief. However, the relationship between these spaces was complicated, as was the third dynamic of the intense interior space of the grieving mind, represented by the unrelenting stare of the camera that barely left the face of the grieving mother throughout the film.

The film is set in the immediate aftermath of death and bereavement. It is set before any return to normative structures and before the rhythm of daily life has reasserted itself. The mother, unable to surround herself with the space and objects inextricably tied to her lost husband, has taken her children out of the house to live in a tent in the woods for a short while. The film presents a person’s desire for non-familiar places in the sudden experience of grief. However, the dichotomy of ‘safe non-familiar’ and ‘unsafe familiar’ is disturbed when the campsite is found by a group of school children who mindlessly destroy the site, throwing the family’s food onto the floor and dirtying or destroying the children’s toys. The family return home for the night, with a conflicting need for safety from the unsafe familiar place. The mother sleeps sat upright in the living room, still unable to enter the epicentre of her grief, the loci of objects and spaces that contain the connection to her former life, her former partner; until she is awakened, in the cold blue light, by the sudden ringing of the alarm clock. An alarm clock that must have rung in that room each day since the death, a siren calling to a lost shared presence that the object once conditioned. As she enters the room the viewer is reintroduced to those isolated objects from the opening scenes, now recontextualized. The alarm clock, the abstract painting of two lovers in bed, an article of clothing draped over a chair, a piece of jewellery abandoned on the nightstand, an unmade bed with the impressions of absent bodies in the sheets and absent heads in the pillows. It is a space locked in the locus of a moment, a place of stasis the griever cannot yet return to motion.

The film ends with the family returning to find a new camp, a new safe and unfamiliar space for them to inhabit until they have reached a point in which they can return. There is no great sense of closure, the family walk off in a random direction for a random distance measured in random choice time and the viewer knows their grieving process will continue, but little is known about how it will continue, for how long it will continue, or what resolutions, impasses, and developments will occur. The filmmakers spoke of their desire to move away from a linear structure of grief, one in which it is a process that is begun and worked through towards an end, and rather their desire to present the reality of grief as an event that forces individuals to devise a completely new structure of life. The conclusion of Nothing Echoes Here embodies this rejection of complete closure.

Similarly to Lost Property, sound played a crucial role in the film. The part of Nothing Echoes Here that affected me the most involved a series of shots leading to a building of sound into a crescendo reflecting the rupture and release of pent up pain. After the mother drops her children off at school she takes some washing to the launderette, the naturalistic sound of the film is muted and in its place begins a soft melodic male humming as she walks through spaces that seem significant, familiar. Passing the boardwalk of a beach, through green fields, and to a site of gentle resting boats, the male humming continues until it is joined in dialogue by a female singing voice, which is then accompanied by the subtle and infrequent notes on an instrument. The music stops and starts with the gaps creating a sense of absence, a sense of space, until it is suddenly broken by the return to the spinning of the laundry drum beating and building in pace and intensity. The shot focuses on the mother’s face and the viewer witnesses this beating turn into an incessant and furious whirr until she is brought to breaking point and attempts to drown out the sound of absence by putting on a pair of headphones. Once again, all is muted and this time replaced by the song ‘The Space’ by Matt Harding and, with the film drawing on the filmmaker’s personal experience of feelings of uncontrollability and intense grief triggered by music, the actor weeps. An audience member would later remark that she found “her weeping to be quite haunting in its ferocity”.

After the films, Lesel and Jimmy explained the research focuses behind this project, their individual approaches, and how these shaped and structured the experience of filming. They also discussed the unpredictable aspects, the ways in which all the cast and crew involved brought their own memories and experiences of grief to the project, and the impact the creation of these films has had on both of them. Lesel sought to explore how the process of recapturing and recontextualizing personal memories and emotions affects those memories and emotions. Jimmy wanted to redress the failure of traditional film to properly capture and respond to grief. I believe that both researchers found a little of what they were looking for and a lot of what they were not expecting. Both films were an impactful response to grief that affected the audience, myself included.

Personally, I keep returning to a line in Nothing Echoes Here that occurred when one of the children expresses their desire to stay in the house rather than return to the unfamiliar space of the woods. The mother comforts them by saying they need to do this just for a short while longer and that “it’s not forever”. What may have been to some an innocuous or quite literal statement for me was recontextualized into a profound utterance. When faced with the sheer permanence of death and the fleeting nature of human life, maybe some small comfort can be drawn from that constant ever-present sense that it is not forever.