The Realities and Risks of Lived Experience Advocacy

by lived experience advocacy / activism, mental health and wellness

I have been deciding on how to write about this for a couple of days. Since I first heard that Amy Bleuel, the founder of project semi-colon, had died. Only one day after I shared about project semi-colon and my own semi-colon tattoo on my facebook page.



How do you write about mental health advocates taking their own life in an honouring, compassionate and real way?


The people amongst us with a profile as helpers and campaigners. The people amongst us who are a model and symbol for others. The people amongst us who speak for those that can’t themselves. The people who inspire and provide hope, who agitate for change, who educate and challenge the status quo. The people amongst us who sometimes take their own life.


How do we talk about it? 


Because some other people are now questioning the authenticity of project semi-colon, whether the hope and momentum of awareness it generated can be trusted. Wondering whether they can be saved if a person with so much vision couldn’t.



I think we need to be asking different questions.


How is it that someone who has risen through the depths gets to the point that they no longer can?

Why is suicide happening and why are the risks still not talked about in open ways?

Why do advocates and people with lived experience of mental health issues succumb when they have experience of reaching out and know how to?

How is it that our systems and society fail people over and over?

How do we support people who do speak up with their mission?

How do we create environments that are ‘safe enough’ for people to say ‘hey, I need some help over here’?



What I know is that there is an extra pressure for lived experience advocates, activists and agitators.


We carry hope for others and ourselves. We are still recovering and healing as we go.

It’s harder to be vulnerable. It’s a more concentrated effort to be what we say we are.

We are put on a pedestal by some, and treated as a token by others. Our best intentions and passion are are often at odds with the people in power who make decisions for the fate of what we live for.

We are easier targets for people to bring down or have our integrity questioned. We are blamed and denigrated when we show that we are human. We are seen as weak for finding the navigation of oppression hard.

We get told we can’t handle it. We get told that we are burnt out. We get told that we are still sick. That we are the reason we are not seeing the wins we seek!


We are not told that it is the better-yet-still-pervasive stigma that surrounds mental health issues. We are not told that it is the ‘system’ that is sick and needs help. We are not told that it is the privilege and power plays of others or the lack of dignity with which people are treated. We are not told that it is the invitations to collude with the what we don’t agree with that make it hard.


And some of us hold it all in and feel that again there is nowhere to turn.



Speaking up is a risk that is not recognised as one.


I have to tell you that standing up and speaking from a position of our lived experience is a risk. We are not only saying that we have endured and we are not only saying that we have some ideas about what could be done differently.

When we are lived experience advocates we are speaking from our perspective and experience of having lived it. There is no arbitrary separation that others have between home life and work life. We put all of ourselves in and often times we are doing this in environments that are challenged by what we have to say.


It is personal. It is professional. It is political.


It is a risk to ourselves and it is a risk to our families. It is a risk to how we live now and it is a risk to our future. It becomes a risk to our continued sense of self when people think that because they know some of our story that they know us, yet they don’t.


It’s a risk, not because we are a risk but because the contexts we speak in and out against are not safe enough.


Not safe enough to remove our masks on the pedestal or amongst tokenism. Not safe enough to find the fight draining and tell it like it is. Not safe enough to not be blamed for any sense of realness and humanity.



Not safe enough to live wholly as we are.


We don’t want pity but we get it. We know our vulnerabilities because we have had to know them and survive them. We are so much stronger than the fragility you read into our stories.

We don’t want to be at the centre but we get placed there. We don’t need the accolades but we live with their discomfort.


We need support. We need spaces to be. We need our realness to remain in tact.


We need to feel that we can still reach out for help without losing face or devaluing the cause we live for.


I would never choose my mental health issues or the shitty life experiences that caused them. I know I am not me without them.

I would never choose to ‘work’ under these conditions in any circumstance, yet I find myself doing that now. I know the risks of being a loud voice in the lived experience space and I continue anyway. At the moment there is no other way or option.



I will never stop advocating, activating and agitating; I do it despite.


I know that I shoulder people up in this work and I know that many more shoulder me up. I am not alone, yet it is lonely. My strength is all of our strength that remains whether we are struggling in the fight or not.

We need to know that we are ok in what we have lived and survived. We need to know we are ok in what we continue to live. We need to know we matter always and that we are more than what tries to (and what sometimes does) defeat us, when we are quiet and when we are loud. When we do it through living and when we are in memory.



See our humanity. See our recovery and healing in action.


See ourselves in each other and keep supporting our allies no matter the platform they stand on. We are in this together, as people who get it and who get each other. As people who need it and who need each other.

We don’t get angry or dismayed that they may have been a fraud when cancer or other physical illness advocates die from what they speak about. We accept the illness for what it is and that despite the best hope and the best intentions and the best agitating for change they were not enough for that person at that time.


We need to realise the realities of mental health issues and suicide, not just the finality of suicide but also suicidal ideation and suicide attempts.


It becomes a go-to thought that in itself is not always about life or death every time. It is about having endured and continuing to endure pain in our lives. Circumstances that are unpredictable and not at the mercy of whether we choose to speak or not. It is also knowing that people who have attempted suicide are the most likely to succeed at a later time.



when someone who has been a campaigner for mental health issues and suicide prevention takes their own life these are the conversations we should be having. About the inherent risks of being an advocate and of how it is still not safe enough to reach out even when we know how.


I honour the struggle and I honour the fight. I honour everyone who knows and gets it. I couldn’t and I can’t do it without you.


our story isn’t over yet ;


… with heart,


I got my semi-colon tattoo last year.
In solidarity and knowing that we continue. Even the people who didn’t make it and don’t live amongst us anymore.

With a butterfly, for emergence and freedom.

We are not done and we are are always becoming.
Writing life how we want and need.

ellie. x