Lived Experience, Resilience & Trauma
How did this pod shift our thinking and priorities?
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Lived Experience
The pod was driven to enhance the role of lived experience expertise within communities and to question rigid diagnostic criteria and processes. They emphasis the importance of grounding research in experience and recognising the therapeutic and academic value of personal narratives.
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Resilience
Group members expanded our understanding of (individual, family, community, societal) resilience and survival, creating space for the voices and empowerment of disadvantaged groups. They explored the different interpretations of ‘resilience’ and how the concept has been instrumentalised to reinforce stigma and discrimination.
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Trauma
The group steered their focus away from isolated 'index events' and towards an understanding of trauma as ongoing, embodied and relational. This requires us to recognise that experiences of trauma may not produce the symptoms of PTSD as defined in the DSM-5.
How are they going about this?
The pod sought to better understand culturally relevant framings of trauma and resilience and how they can be addressed in community and mental health interventions. Bringing together knowledge from across countries and disciplinary backgrounds, collaborators focussed on countering the core assumptions of biomedical diagnosis and treatment. We emphasised the need to look beyond ‘index events’ towards ongoing experiences of trauma and to centre these experiences at the heart of trauma research.
The pod commissioned a scoping review of existing literature, which demonstrated the cultural variation of trauma across country contexts.
Listen along to this audio-summary of the group’s discussions (January to July 2022):
Below is a personal narrative from a pod member that describes her lived experience of the issues that the pod tackles. This pod discussed why first person narratives are important to ground our discussions in the realities of the topics under debate:
They highlight the personal impact of trauma and why it matters that we understand the ways in which people experience it, and how this may differ from professional concepts that are derived from particular contexts and perspectives.
Personal stories can illustrates the way in which trauma is often ongoing and protracted rather than a singular event, with one adversity leading to another (an issue that we discussed at length during pod meetings). This contrasts with the psychiatric conceptualisation of trauma that is reflected in the PTSD construct, of a singular “index event” that gives rise to a trauma response. It also inherently challenges the ways in which trauma is often accounted for and measured in research, and points to the need for alternative approaches to understanding what trauma is in different contexts and how it is experienced by different individuals.
First person narratives such as this one also highlight the urgency of mobilising an effective policy response that takes local contextual factors into account. Our group has talked a lot about working with communities rather than only individuals, to tackle issues that affect whole communities and may be passed on from generation to generation.
Finally, giving people with lived experience of trauma and mental ill health a platform to share their stories is a step towards enabling survivor-led research and advocacy, which can better address the felt needs of those who have experienced trauma than that led by clinicians or researchers without a direct stake in these issues. In the medium term, our group has discussed partnering with people in the global south who have personal experience of trauma and mental ill health to develop grant proposals that address their priorities.
Lived experience of trauma:
A personal reflection from a Ghanaian perspective
By Dorcas Efe Mensah
As far as I can recall, I have had experience with trauma since childhood; starting with vivid memories of maltreatment from my stepdad at the tender age of about 4 or 5. He would knock my head with the tips of his fingernails whenever I displeased him. Then also, while living alone with my grandmother in a different region, I always wondered why I couldn’t live with my own parents like the other child I played with.
I had never met my dad even though his family lived a few houses away from ours in Agona Swedru. I only heard about him from the stories grandma told me. My grandma often told me that my dad was planning for me to move in with him at his residence in Accra. I relished the idea so much that I dreamt about it every night and talked about it when I played with my friends. However, I waited for years, and my dad never came. This caused me a lot of anxiety. I always wondered whether he loved or cared that I existed.
Eventually, I moved to live with my mum and her family in a different town. That made me happy, because I thought my dream to live with my parents and siblings was about to be fulfilled, at least partially. I was wrong. Life with my stepfather was one of physical and emotional abuse. It was a traumatic experience. I also helplessly watched my mother being abused by the same person. Once, my stepdad kicked me out and I was forced to move in with a family acquaintance. I was about 10 years at the time.
Living with my new family marked the beginning of a life of hard labor. I woke at 4 am each market day to go and sell sachet water at the Kasoa market. Then I left for school at 6 am and would go back after school again to sell. By 11 years, I was already tired of life. At times, I wept whenever I saw kids being driven to and from school by their parents—a scene I regularly witnessed in the traffic jams where I plied my trade. I felt I could have had this sort of life if I didn’t have an absent father.
Later that year, my mum sent me to live with her younger sister in Osu, a suburb in the capital. I thought that was going to be the beginning of a normal life for me until I was hit with the bitter truth—I had only transitioned into another form of child slavery and abuse.
My aunt, a bread baker at the time, required me to wake at dawn, between 2 to 3 am to help with baking before getting ready for school in the morning. In one incident involving a gas leak, I injured and partially burned my face in a resulting exploding flame. My face was covered with blisters for weeks, yet I wasn’t taken to the hospital but was treated with ointment at home.
After school each day, it was my duty to get home quickly so I can go and sell the bread. I would carry a basket load of it and walk from one place to another to sell. I was told the proceeds were what was used for my upkeep. I did this from age 12 to 14 amidst all kinds of physical and emotional abuse, not just from my aunt, but from her husband and children as well. I was mostly fed with the leftovers of her kids. Once, my aunt threatened to deform me if I dared disobey her. I wanted to inform my mother, but my aunt had no respect for my mum and made it clear to me that mum cannot do anything about the situation. I also had no opportunity to inform my grandmother about what was happening. I grew weary and often prayed. Eventually, at age 14, I mustered the courage to look for my dad and found him. However, when my aunt found out, she called and smeared me. I wouldn’t hear from my dad again until years later. I was sacked from home (my aunt's place) and I couldn't go back to my mum's because I did not have money for the fare. I decided to sleep at the Osu market because it was close to my school and empty at night. I did this until I received help from a teacher in my school.
It was my first year at the Osu Presbyterian Secondary School (PRESEC- Osu). I had been invited by my form master, Mr. Commey, for a private conversation. Among other things, he wanted to know why I was always moody. I never knew I was. He told me I always wore a frown and that it was obvious there was something wrong. He said he wasn’t the only one who had noticed this but other teachers and even the headmistress. I broke into tears after hearing this. He promised to talk to my dad and did so, but my father harshly told him to mind his own business. Mr. Commey didn’t give up on me. He arranged for a female teacher to take me in while he helped secure a scholarship. And that is how I completed senior high school.
I stayed home for 4 years before getting the chance to go to college. Throughout those years, I worked as a pupil teacher to fend for myself. Later, I decided to move back to Accra, first staying with some old friends and then later moving into my own rented place. I applied to continue my education at the Ghana Institute of Journalism (GIJ) and with the help of some friends, succeeded in using the Commission on Human Rights and Administrative Justice (CHRAJ) and the Women and Juvenile Unit (WAJU), now known as the Domestic Violence and Victims’ Support Unit (DOVVSU), to force my dad to see me through college. At the end of my diploma, I got the opportunity to work with the foremost privately-owned media house in Ghana, the Multimedia Group, as an online broadcast journalist. Misunderstandings between me and my dad had put us apart. I was tired of the turbulent nature of our relationship and decided to give up on us.
In 2010, I was diagnosed with Major Depression after my boss at work had encouraged me to seek psychological help. This affected every aspect of my life, especially my relationship with colleagues at work. I often fought and quarreled with my seniors and viewed the people around me as being against me. About 4 years after my diagnosis, I quit my journalism job for no reason. About 6 months later, I started a new job as a writer at an online portal. Two years later, I quit that too, for no reason.
I moved in with my grandmother in my hometown and started a small business. Two years later, I was assaulted and disgraced in public after a misunderstanding with a neighbor. My abuser pushed me onto the ground and stripped me naked in the presence of my employees. This left me in shock for days. The police did little to apprehend the perpetrator, who assaulted me again the next morning after the first incident. The inaction on the part of the police negatively impacted my mental health. I began hallucinating and had the incident play repeatedly in my mind day and night. As the days turned into weeks, and the perpetrator was still walking free, I became suicidal and homicidal, which led to my admission to a psyche ward for some weeks. Before then, I posted about my assault on Facebook and about the seeming lack of interest by the Agona Swedru police to follow up on the matter.
A friend, Adam Reese, who used to work with me at the Multimedia Group, saw the post and wrote an open letter to the Inspector General of Police (IGP). The letter caught his attention and he ordered the arrest of the person who assaulted me. My life was never the same after I was discharged and the court process itself was enough to push me further down into depression. After fighting in court for a while and getting a semblance of justice, I decided to heed the advice of my doctors to concentrate on my recovery and not pursue the matter anymore. Meanwhile, the person who assaulted me, although having been given a restraining order, kept lurking in the shadows, using social media to bully me. He used fake accounts on Facebook to make allegations about me beings a husband-snatcher, amongst others. Worried, my friends and former colleagues kept reaching out, with some advising me to respond on Facebook. I decided not to and stayed away from social media for some months. Later, I learned the post was deleted by the poster. There was a time, he called my phone and upon hearing his voice I had a panic attack. This and many other forms of bullying from this person who relentlessly sought to harm me continued until I relapsed into treatment-resistant depression for about 3-years following that incident. The attitudes of some relatives made my recovery difficult.
After suffering a wild episode in 2020, I was reassessed. It turned out I was previously misdiagnosed with depression and later diagnosed with bipolar disorder. Even though I am now undergoing treatment for my condition, I suffer severe bodily pains which get in the way of my daily activities. Sometimes I would be in bed for days because of this pain which doesn’t respond to any painkiller except tramadol. However, due to its addictive nature, my doctors have refused to prescribe it to relieve the pain. In July 2021, I started seeing a psychologist who diagnosed me with Complex Post Traumatic Stress Disorder (c-PTSD). He explained that trauma also exhibits itself in pain like the one I am feeling. Since then, I have been helped to manage the pain, which I understand, only exists in my head.
My story isn’t unique though, as I am aware that a lot of Ghanaian children would relate. Many children, especially from rural and semi-urban areas, are sent to the capital to live with relatives and caregivers who usually subject these children to horrendous abuses. The sad reality is that their abusers almost always get away with their acts. Often, the family would stop anyone who wants to report such abuses to the police and would insist the matter be solved at home. This phenomenon has contributed to institutionalizing abuse by family members without any consequences. Again, parents do not even recognize the mental health toll of such abuses on their wards. The government and the Ministry of Gender, Children and Social Protection (MoGCSP) must ensure that all the fine policies made to uphold the rights of children and vulnerable people in our society are implemented to protect them from abuse, especially by people who are tasked to take care of them.