I recently had a great opportunity courtesy of TCI Global to accompany a team made up of leaders within the movement of persons with psychosocial disabilities on an exploratory mission in Tanzania and Rwanda. The leaders included us from Kenya, colleagues from Uganda, Pakistan, India, Indonesia and Nepal. It was a great moment meeting peers in Tanzania and Rwanda, getting to know about their work at community level; their advocacy; their wins; their struggles and many more.
I make this reflection, with thoughts from the past when I started my own advocacy, considering the present and gains that we have made over time, as well as a peep into the future with anticipation of more opportunities for our voices to be heard and bring change.
Whereas we situate ourselves within the disability movement, it is not the same for all the peers that we came across. This is because for many of us, our early understanding of mental distress meant that all options we had of identity revolved around the tag of ‘mental illness’. Personally, I remember I took quite a while looking for a ‘magic wand’ if only ‘I could feel normal’ and not experience the mental distress that I felt for most of my 20s. I did use anxiolytics and antidepressants for a while (but my own personal feeling was that I needed much more than just drugs).
I found most of what I was looking for in my peers who have been an ever present source of support not only emotionally, but I have received over many years now, a space where I have received immense support to carry out my work duties because accessing a livelihood/an income has played a huge role in how I have been able to navigate my own life journey as someone that experienced mental distress.
Now in my late 30s, I consider myself lucky to have made the steps I have made in my life, courtesy of the advocacy that I have been able to do as a woman with a psychosocial disability. I especially see as a turning point, my encounter with the Convention on the Rights of Persons with Disabilities which opened so many doors for us, to view our lives, not just from mental health lens, but from a lens of inclusion. I have been lucky to connect with so many colleagues from across the globe, doing amazing work as self-advocates. And I know that self-advocacy gives us, as persons with psychosocial disabilities, a chance to make things happen. To change things.
It is these experiences that I have picked over the years that I share with peers with psychosocial disabilities whenever I meet them. It was no different when we were in Rwanda and Tanzania. I saw, young people who reminded me of when I started out. Young people who were determined to question the violations they face in their communities by virtue that they have a psychosocial disability. They shared with us stories of pain and resilience; their experiences in mental health institutions; the violations they face. Some of the experiences, some that have been documented over years, and the shock after all these years, that people with psychosocial disabilities are still facing sexual abuse in mental health institutions; they are facing inhuman treatment in mental health institutions; they are still facing abuse in their own communities. But also, that they are rising; they are starting groups at community level where they are fighting against injustice. Where they are reaching out to leadership in their community and demanding that they are also treated as human beings and not people without dignity.
Now that I have also had chance to work within disability inclusive programming, and as I see that programming is seeking actively to have people with psychosocial disabilities accessing education; accessing work and employment; social protection among others, I am happy that it is a space that can be exploited by more of us. But it does not come easy. There have to be investments to reach more people with psychosocial disability. To let them know that sometimes there is no ‘magic wand’ to cure the ‘mental illness’, but that it is possible to thrive in their communities with the right supports.
As I like to say, that my light bulb moment was when I was made aware of the CRPD, I hope that many of us can have access to such information. I know that more spaces to amplify our voices as persons with psychosocial disabilities are needed. And I hope that as TCI Global leads this process to open up such spaces, that we get more solidarity from different spaces, so that the legacy that was built many years ago, under the umbrella of the World Network of Users and Survivors of Psychiatry; that our voices keep getting stronger and stronger. And also, that the Addis Declaration remains for us a legacy, with which we will keep centering the voices and experiences of persons with psychosocial disabilities in the African region.
