How to Be A Mental Health Lived Experience Advocate in a Pandemic
Updated: Jun 26
An interview with activist and advocate, Kat McIntosh, by Elizabeth Harris
Kat McIntosh is a lifelong advocate and activist for persons with mental health conditions or those experiencing mental distress. When the pandemic hit and closed many resources, she saw an opportunity to start her non-profit, Persons With Mental Illness (PWMI), to create digital safe spaces and change mental health systems. I talked with Kat about mental health, the pandemic, and how we can apply a lived experience lens to our everyday.
Kat, you founded your own non-profit. Can you tell us about PWMI?
PWMI is an organization that seeks to provide digital interventions for persons living with mental health conditions. It does it in a way that combines the clinical model, which is typical in mental health organizations, with the lived experienced aspect. Lived experience is new to some mental health spaces. It involves persons with mental health conditions dictating their own services and being experts of their own care.
Imagine someone with a mental health condition collaborating with a clinician or a social worker through a digital app, or web interface, telling them what they want their services to look like. That’s the unique aspect of PWMI.
I know Mental Health and advocacy is a passion of yours. Where does this come from?
I am a person who lived with bipolar disorder since I was 16 years old. It has a medical link in that I believe I may be a second or third-generation person in my family with this disorder. I’m not sure. Mental health or mental illness was not spoken about when I was growing up. My bipolar disorder was brought on even more because I experienced a lot of childhood trauma, a lot of abuse, a lot of neglect, even sexual trauma. Imagine, 16-year-old Kat experiencing these symptoms of bipolar and depression and not knowing what the hell it was and having no one to talk to about it.
Then, a catastrophe happened at 20 when my dad passed away, and now my life is completely spinning out of control. Even in all of that, I was always passionate about helping people and helping people who are going through what I went through and changing world systems.
Even though in my country [Trinidad and Tobago], I wasn’t able to get very employable jobs related to mental health. I was able to get jobs within domestic violence spaces, child protection spaces. I worked at the Rape Crisis and Coalition Against Domestic Violence and for a child protection agency for some time.
My lens has always been this social justice activism lens. How can we change this frigged up system? That’s my mindset. Just changing systems and being this strong arm telling people, “You’re doing sh*t. Do better!”
Wow! You have been a survivor, a conqueror, a hero through your journey.
That hasn’t been easy. When you’re a trailblazer, you realize how much people don’t want you on your trail. You realize how much opposition you can have. I am a pansexual woman, who is a feminist and a black rights activist and doesn’t care to get married and has a mental health condition and openly talks about having a mental health condition and is okay with that. I’m okay with people knowing, but a lot of society is not okay with that. As progressive as we like to believe that we are, you realize that you get a lot of opposition, and you have to do a lot of convincing. You have to know your sh*t.
Kat, you have been and continue to be very involved in the mental health community like the Global Mental Health Peer Network. What inspired you to bring PWMI to life?
I lost my job on the 18th of February, and we were put on lockdown at the beginning of March. I couldn’t get a job, but I’m a workaholic, and I do genuinely love what I do.
I learned a lesson years ago from someone that when you’re not working, when you don’t have a job, work as if you do. Don’t stop, especially if it’s something that you’re passionate about. Don’t stop that momentum. That is essentially what I did.
At first, it wasn’t easy. I experienced tons of disappointment and rejection. I felt like I was in a financial, emotional, even mental crisis trying to adapt to this unavoidable world event I couldn’t control. But in May, there was Mental Health Awareness Week hosted by the Mental Health Foundation in the UK. this year’s theme was kindness, what it means to be kind to someone with a mental health condition. I found this really interesting. For me, it combines what I am passionate about, which is the lived experience perspective, and helping persons within various world systems to understand what it feels like to live with a mental health diagnosis, as well as what it means to support someone with a mental illness.
For that reason, I started that week with a panel discussion where I brought together a lot of my peers from all over the world. There were people from Cameroon, Zimbabwe, Trinidad and Tobago, and India. It was just this beautiful space where a bunch of people who have mental health conditions, such as OCD, schizophrenia, and bipolar disorder, to just talk about the things that mattered to us.
For the first night, we talked about being kind to yourself if you have a mental health condition. Then about being kind to a partner who has a mental health condition. Then we delved into how can organizations be kind to a person with mental health conditions. Then how communities can be kind to a person with a mental health condition.
The discussions were just so rich and amazing. One of the things that was pointed out so many times was that we need these conversations to happen and we need more of these spaces. Besides having the conversations, we also just need spaces. We need spaces where we can share what it feels like to live with a mental health condition. We need spaces that are accepting of that and take that into context and listen to that. That is the key aspect, listening to people who have mental health conditions telling you what it’s like to live with it and what they need to live with it.
PWMI just naturally developed from there.
How has PWMI help you and others during the pandemic?
The main thing that PWMI has done is that it created this amazing space. It started with an international forum for all these people to come together, express their experience and realize there was a shared commonality in the experiences.
It also created room for my team. I appreciate Candice, Moses, Elizabeth and Sannuthi, and Karen tremendously for believing in me and this work. For instance, with Sannuthi, she was exposed to the clinical world. She is now better able to advocate for those that she cares for and regularly support. I think the rest of my team are also learning this whole new approach to mental health and aiding those diagnosed.
For me personally, PWMI has given me hope. Whilst we aren’t in a place where we anticipated to be, and where I wanted us to be, I still feel hope because something like this can even happen. That I can even talk about the lived experience perspective in mental health and combining it with clinical experience. That I could get a cool co-executive director who shares that value system and supports this vision tremendously. That I can get a team around me who can see this way of creating a mental health system and can say this actually makes sense. Also, the fact that we can do this on a global landscape, my team resides in India, the US, Trinidad and Tobago, and Nigeria, gives me so much hope in this world and how we can come together to change it. The pandemic is awful. But it also furthered open a world stage that allowed all of us to come together.
What are some of the things you have achieved so far during this pandemic that you’re really proud of for PWMI and for yourself?
Just creating it and just starting it, that’s a big deal. Months ago, I would have never met my team. I would have never met all these amazing people who believe in me, even when I don’t believe in myself sometimes, and believe in this vision and take it as their own. That’s amazing.
I, also, really appreciate the fact that my work with PWMI, and my previous work, has opened this amazing door to work with Mental Health America and do such beautiful work there. Mental Health America is another organization that values the lived experience of persons with mental health conditions and values persons with mental health conditions being part of the process, not just a bystander. Because of both organizations, I’ve had wonderful experiences of just meeting other people in our field. We may be small in numbers, but we are there.
What is next for you and for PWMI? How can we support PWMI?
Next for PWMI is our website launch.
Support us by following us on social media, sharing our posts, and also contributing financially once we have our website up. Please contribute financially because it takes a lot of work and a lot of finances to get these things done.
Definitely volunteer with us. There is a lot of room for persons to volunteer. We need the hands. This work is not easy, and I think my team will value more people being on board.
What advice do you have for others to be an ally? Or be a lived experience advocate? Or to be an engaged member of the mental health community?
Believe persons with mental health conditions. This is something that I’ve been trying to preach for some time now. Believe us.
I have had bipolar disorder since the age of 16, which means I have had so much time to understand myself and to know what works. To know the experience of getting medications and then taking them. I can tell you which medications give me which side-effects. I know that if I don’t sleep a particular night, this is what I need to do to cope the next day. I know the times in the month, or the year, that are going to trigger me, and I can pinpoint what exactly those triggers are.
I have had time to understand living with a mental health disorder since I was the age of 16. That has given me a body of time to become the expert of my own life. Considering that I am the expert of my own life, I do not need a doctor, or clinician, or even a family or friend, not being an expert of my experience, dictating to me what I should or should not be doing. There is a part that they play, but that part has to incorporate me.
If we take it from that lens, then family, friends, mental health professionals, are really support systems. Support systems are supposed to support a key player. That key player is me. If we truly understood the nature of a support system then we won’t treat a support system like they are the only experts in the room.
Believe us about our care.
Is there anyone or organization you would like to give a shoutout to?
I want to give a shoutout to my team! I really want to just commend the work that everyone single one of them does. I cannot do this work without them. PWMI is not about me.
Sannuthi, for being an awesome co-executive director, and a great clinical psychologist and giving me, and the whole team, that clinical lens we need. Moses, with all of his amazing development skills. Karen, with her beautiful eye for creative content. Candice and Elizabeth, for their hard work in our development department. My team has really done a great job of being dedicated to this effort and doing all that we need to do to make this organization succeed.
Thank you to all of you!
You can find more information on PWMI and stay up to date with them by following them on social media @stand.with.pwmi on Instagram and @StandWithPWMI on Facebook and Twitter. Make sure to also check out PWMI’s website standwithpwmi.org.
Kat has also written a book, “Letters to the Broken, Healing & Healed,” that is part of The Letter Project. In her book, she utilizes poetry to offer advice and explore themes such as women's rights, gender-based violence, child abuse, and suicide. You can order it on Amazon.