What does advocacy mean? Advocacy is about speaking or acting on behalf of a disadvantaged person (or group), defending their wishes or rights, and remaining loyal and accountable to them despite pressures to do otherwise. Advocacy is also about changing systems for the better by influencing policy, practices, or laws in ways that will benefit people in our community and protect their rights. It requires commitment, focus, and skillfulness.
Advocacy is about speaking or acting on behalf of a disadvantaged person (or group)… Advocacy is also about changing systems
If you are a person with “lived experience,” a “peer,” or a “consumer” then please understand that this, in and of itself, is not valid enough
criteria to be a good advocate. While your identity and your experiences (especially as related to mental health) matter, they alone are not sufficient to challenge some of the tricky and complex institutional and governmental powers influencing our understanding of psychiatric disability and the distribution of resources (e.g. housing, services).
If you are a person with “lived experience,” a “peer,” or a “consumer” then please understand that this, in and of itself, is not valid enough criteria to be a good advocate.
I start with this controversial point because over and over again, the most popular advocacy “line” people offer at consults, focus groups, proceedings, etc. for ethical dilemmas and problems with the mental health system is to ask whether “peers were included,” or if, “peers gave feedback.”
Lately, I have challenged this knee-jerk response, because it is predicated on an assumption that if “lived experiencers” were involved in complex systemic issues, they would somehow be offering substantive or innovative feedback for change. Sometimes yes, but often no – not without research into a problem, or speaking with people most impacted, or developing relationships with supportive allies.
In fact, sometimes the very problems occurring in the system are reproduced via individuals who identify as “peers” or people with “lived experience.” Sometimes these peers adopt excessively cheerful or optimistic views of healthcare system delivery as opposed to critiquing it.
They contort themselves to accept clinical or policy justifications and in so doing become extensions of the system through their actions, words, and ability to be socially acceptable and conformist. I have seen examples of peer workers counselling hospital patients on their “best interests” as opposed to listening or following a patient’s instructions and hearing what would allow them to feel they have more control over their lives. There are very few advocacy and human rights campaigns being spearheaded by peer labourers though I think there is powerful potential for organising for change if community capacity were prioritized in this direction.
Thankfully, there are however a number of individuals and small organisations doing collaborative and innovative work to improve the lives of people who are on the margins and addressing advocacy issues related to violence, housing etc. There are smart, organized, coordinated and focused efforts that work to change and improve specific problems thanks to thoughtful planning, thorough research, and earnest selflessness.
We need more strategies like this which are focused on understanding how the system makes economic and policy decisions and directions. It would be great if younger activists and individuals interested in advocacy would create support groups looking at how to better understand the system, what ethical principles we should collectively adopt going forward, and more importantly how to meaningfully evaluate what has worked and not worked in the past for us – by us.
…create support groups looking at how to better understand the system, what ethical principles we should collectively adopt going forward, and more importantly how to meaningfully evaluate what has worked and not worked in the past for us – by us.
I also suggest that our community develop an extremely inquisitive appetite for scrutinizing anything that sounds like “inclusion.” The system knows it is supposed to be “inclusive” – that is not news to people in power, but what kind of inclusion is happening? We consumer/survivors advocated for inclusion years ago, and now we (to some degree) have it, but at what cost, and what kinds of identity and ideas are being included? An advocacy issue that currently needs attention is the Ontario government’s recently passed Bill 41, also known as the Patients First Act on December 7th, 2016.
This Patients First Act aims to ensure patients are at the centre of the health care system. Are there any consumer/survivor groups organising around this? Probably not. Who will monitor advocacy and the new discussions about accountability in a changing landscape within healthcare? The Psychiatric Patient Advocate Office, which is no longer at arm’s length from the Ministry of Health, is going through re-evaluation of its services to better align itself with Ministry initiatives such as the Patients First Act. What will this mean?
If we are to re-invigorate a movement that believes in justice, advocacy, and the protection of rights, we need a new approach that understands that while some gains have been made, there are many other losses we have not even begun to process—let alone respond to intelligently. The landscape of advocacy is changing and the fire of the past has dwindled.
We have fewer advocates. This is true amongst different groups and social movements looking for change.
The pendulum has definitely swung in disturbing directions, but it will swing back. In the meantime, we must be more aware of the losses of certain rights and be more resolute in our efforts to critique “inclusion,” especially the ways it has been used by neoliberal agendas that expend with both advocacy and individuals who cannot thrive in capitalism.
Written by Lucy Costa
Awesome clarification of what it means to be an ‘advocate’, Lucy. I appreciate your point about lived experiences not being enough, but rather we need critical engagement and scrutiny with policy and practice issues. Articles like this help to foster this necessary critical thinking and hold promise for engaging the masses in advocating for important human rights issues, as early Mad activists have been doing all along…
If “sometimes yes” does apply then I am confused why you would advocate to not value lived experience that is well organized, thorough and selfless? There are plenty of people working within the system that have neither lived experience nor do they possess superior organizational skills which seems to be one of the greatest obstacles.