Navigating the unnavigable

By Viv Gordon, from Improving Access to Oral Health Services for Adult Survivors of Child Sex Abuse (CSA).

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).