“What I want you to know”: Danielle McWilliams Research Findings
“What I want you to know” – Adult Women’s Stories of Cleft Lip and/or Palate
About the Researcher
My name is Danielle McWilliams, I am a trainee Clinical Psychologist with experience in craniofacial research. I am also a woman born with a bilateral complete cleft lip and palate.
This project is my thesis for my DClin qualification at Canterbury Christ Church University (UK). I also have an MSc from Kings College London and an MA and BA from The University of Cambridge. I am also a reviewer for the Cleft Palate-Craniofacial Journal, and have spent four years working in craniofacial research.
My work tells an important part of my story, one which I am proud of. I am also proud of the fact that I have done this alongside navigating and making sense of my own story. I have had approximately 28 operations, been treated in four different cleft teams and have my own story of what it is to be a woman with a visible difference in today’s world.
I am a strong believer in the importance of lived experience within clinical and research teams. I have learned how and when to use my lived experience in a way that enriches my work, and the work of teams I have had the pleasure of working within.
About the project
This project employs a narrative, photovoice methodology to explore adult women’s stories of cleft lip and/or palate.
Photovoice is a form of data collection, whereby participants are asked to take photographs to represent their narrative.
Narrative interviewing describes a method which utilises humans’ native storytelling ability. With no set agenda other than “tell me your story”, participants were not limited to a satisfaction questionnaire.
Through the women themselves producing images that tell their unique story of an adult born with a cleft, untold stories are constructed. Through a narrative interview with the lead researcher, who is also a woman born with a cleft, stories are shared and enriched. Through utilising an academic and professional platform to write a thesis, produce manuscripts, create training material and raise awareness, stories are heard.
To date, 14 women have participated in the project, 9 in the UK and 5 in the US. At the time of interview, the women were aged between 22-72, with an average age of 44 years.
Participants took photos on their smartphones, and were free to photograph anything. All images including faces or identifiable information were used for the interview stage but will not be published to ensure confidentiality.
A snapshot of the data
This is a very preliminary insight into some of the images and stories that have been constructed throughout the project.
Response
This is a very preliminary insight into some of the images and stories that have been constructed throughout the project.
“The stories that are told are undeniable. Any woman can relate to feeling scrutinised, feeling different, and even feeling dissatisfied. These images/stories unlocked something in me: seeing the true vulnerability and rawness coming through in what I reckon could only be achieved by a conversation between two people who truly see each other.”
Notes from Danielle
The rest of this booklet tells you about my project. Please know that I have laughed and cried with these women, and have often found great strength, alongside pain, in their stories. It has been an absolute honour to hear, bear witness to and be trusted to tell them.
Read Danielle’s Research Publication
If you have any questions, feedback, opportunities or ideas in mind, please get in touch at [email protected].
For ongoing updates, follow the project’s X/Twitter account @WomenAndCleft
