Psychosocial Disability Awareness Month (PDAM) is celebrated annually in July. For 2022, the SA Federation for Mental Health (SAFMH) will be running the theme “In My Own Words”, focusing on self-advocacy and storytelling to amplify the voices of mental health care users (MHCUs), with the aim of highlighting the need for inclusion, acceptance and reducing stigma.
The campaign will call for persons with lived experience of mental health conditions to share their stories, in any medium they wish, and we will compile these into a digital magazine, which we will publish in August 2022.
“At its heart, self-advocacy is the ability to communicate what your needs are” (Lee, 2022). In support of the theme of self-advocacy, SAFMH will be highlighting the importance of storytelling and the need to amplify the voices of MHCUs in the fight against continued stigma and discrimination when it comes to psychosocial disability (PD). Research shows that when persons with mental illness, including those with PD, share their stories, it can have a positive impact on how the rest of society perceives them (American Psychiatric Association, 2020). It is our hope that this year’s PDAM campaign will harness these stories and provide a platform for different voices to be heard and acknowledged.
Unlike traditional advocacy, where we see people and organisations speaking on behalf of others, self-advocacy is about putting the power in the hands of persons with lived experience (Ball 2013). They are after all the experts and their voices must be included in mental health policy and other developments in the mental health sector. Indeed, advocacy for and from MHCUs is a key element in destigmatising mental illness, improving access to and quality of care, and prioritising policy change for mental health (Davies et. al, 2021).
Stigma is one of the main barriers faced by persons with PD in South Africa today (Mahomed and Stein, 2017). It is a major cause of discrimination and exclusion, affects people’s self-esteem, disrupts relationships and limits people’s ability to socialise (WHO, 2020). Stigma can lead to lost opportunity with regards to employment and education and can also hinder access to basic human rights and healthcare (Davies et. al 2021). SAFMH holds the view that the South African government needs to actively work on renewing the now-lapsed Mental Health Policy Framework and Strategic Plan so that there is an ongoing, mandated, national commitment towards reducing stigma in the country.
“I wish people understood it a bit more. I wish people weren’t so scared of it and I wished people knew that it wasn’t a permanent things, that it is a process. I wish people knew that someone with bipolar is doing the best they can under the circumstances. Sometimes I just feel like maybe it would’ve been easier if I had a terminal illness, that I would get more sympathy and more understanding than I do with this illness” – *Janine (A person with lived experience who kindly shared their life story with SAFMH)
Research has shown that storytelling can cultivate empathy and compassion and that it can help us feel like we are not alone: “Storytelling can empower individuals and communities by recognising their experience and expertise and promoting their agency” (Ball, 2013). It has also become an important advocacy technique when it comes to breaking stigma (Ball, 2013).
Our call to action
SAFMH believes that the continued stigmatisation and resulting exclusion of persons with PD can be mitigated if we commit to designing meaningful programmes and platforms for self-advocates to share their stories. As such, SAFMH is calling for the South African government to commit to launching a refreshed Mental Health Policy Framework and Strategic Plan that is drafted in close collaboration with MHCUs and advocacy organisations to ensure the barriers faced in destigmatising mental illness is comprehensively addressed. We call for meaningful commitment from the government to listen to the stories of persons with PD and to hear exactly how their needs should be met, which could hopefully lead to improving quality of care, as well as increasing access to care.
We also call on organisations working with persons with PD to purposefully commit to instituting storytelling as a tool for effective advocacy. There is ample evidence that shows that self-advocacy and storytelling are two of the most important and powerful tools to employ in the aim of reducing stigma and improving overall mental health care for our country. It also goes a long way in ensuring inclusion for persons with PD in all aspects of life.
Added to this campaign is a call for persons with lived experience of mental health conditions to share their stories with us, in any medium they wish (either write a story, ask to be interviewed, do a piece of art, write a poem – anything they feel comfortable with). Submissions can be sent through to SAFMH Project Leader: Advocacy & Awareness, Michel’le Donnelly, at michel’email@example.com. All contributions will be compiled into a digital magazine, which we will publish on our website in August 2022.
Take a look at our infographic here.
* Please note these names have been changed to protect the identity of the storyteller.
For enquiries, please contact:
Michel’le Donnelly – Project Leader: Advocacy & Awareness
CELL: +27 (0)79 799 6533