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Fostering Inclusivity When It Comes To Lived Experience

Updated: Mar 16, 2022

I have been thinking a lot lately about lived/living experience and how we honour this without gatekeeping that form of wisdom, as well as how it can contribute to important change.

For me, someone who has one foot in lived experience as someone with mental illness, and another foot in the professional realm as a nurse - I feel myself caught between two worlds sometimes. However, this dual perspective also offers me the opportunity and privilege to appreciate sometimes (seemingly) opposing perspectives. I have appreciated seeing the slow, but steady shift in honouring lived experience as a form of knowledge in healthcare and how that can help contribute to meaningful change in healthcare systems, research, care interactions, and learning opportunities for the public or professionals going into the healthcare field.

Western medicine comes from a history steeped in patriarchy, that emphasizes a drastic power differential between practitioner and patient. What we are living through at present, is an awareness of this and a shift towards balancing this power differential into a more collaborative model. This process is ongoing and there are certain places in healthcare where it is easier to apply than others. Mental healthcare in particular, adds a layer of complication as it enters the realm of competency at times.

For me, it can feel as though this area is slower to change and faces more risk of patients experiences being reduced to pathology versus acknowledgment of an equally recognizable perspective. In certain interactions it can feel as though the offering of "your perspective is valid" when it comes to mental illness. is performative more than truly considered. I understand this to some degree as a nurse because ensuring someone is safe to participate or share their story in a way that is safe for them as well as others is important; however, there are aspects of this that I would like to see further shift where possible.

The heart of what I want to get to today is how we (and I am including myself and the work I do with Vancouver Island Voices for Eating Disorders) include voices of lived experience without gatekeeping them. I want to dive into the nuanced conversation around what forms of knowledge we are biased towards - those with recognized credentials - and what that means to this conversation about valuing lived experience and fostering inclusivity. Where can we grow in this area? Where are boundaries important? How do we move forward?

In my experience, helping found and establish our non-profit - VIVED - I have poured my energy into creating recognition where I can, that allows our group to be considered "qualified enough" to collaborate with professionals. It is one of the most emotionally labour-intensive things I do with VIVED - trying to foster an image of reason with the goal of collaboration. Often the image associated with lived experience of mental illness and this kind of advocacy is of "unreasonable" anger or simply being out of touch with reality. There is absolutely anger that arises in the work we do; however, we work very hard to translate that passion into the goal of determination while honouring the importance of collaboration. The amount of thought that goes into every word, phrase, image, and interaction as folks with lived experience seeking to collaborate with healthcare partners, individual professionals, educational opportunities, and larger organizations, is immense.

I have to acknowledge my own privilege in this (and other members of our team) as I am white, middle class, I have been afforded the opportunity for post-secondary education, and as someone with nursing experience, that has opened many doors for me. I do not know what the experience of trying to gain standing would be if I were a person of colour or living at other intersections of disadvantage (I can only speak from my own.) I can only imagine the additional barriers of not being afforded the same room to make mistakes, feel anger, or be considered as having something to offer. That is something we all need to reflect on (myself included) when stressing the importance of lived experience as a valuable form of knowledge.

I can certainly understand the hesitancy to back or collaborate formally with an individual or organization where little is known and credentials are limited. I can appreciate that certain organizations, or even individual professionals, have certain legal and accreditation requirements to consider when collaborating with anyone.

As VIVED has grown, we have had to consider the same things (though on a much smaller scale.) For example, at times we have edited people's statements regarding their experiences (with their knowledge and consent) if sharing something publicly that could be potentially triggering to others in the community. It is still a form of adjusting someone's story. At times we are tagged in others social media posts and while supporting that individual, we do not necessarily share that content on our platform if (to our knowledge) it isn't entirely factual, goes against some of our values, or could be potentially triggering.

I know I have felt my own frustration at times, for feeling as though we have to prove ourselves as palatable lived experience, in order to even get our foot in the door for an opportunity. We do not have credentials, accreditation, special certification, etc. behind our names as individuals and as an organization, to always be considered reputable. At times, our words, as persons with lived experience, and the direct impact of limited services are not considered as accurate as the claimed intent of a decision-maker, treatment program, healthcare provider, etc. In this situation, one perspective is still outweighing the other and when it comes impact versus intent, there is a great deal that needs to be considered. The best intent does not necessarily excuse the impact on the person's affected.

This is an ongoing conversation and we want to continue to engage in it, because we know it is complicated. I know the internet is not well suited to healthy dialogue and nuanced conversation, which is why I tend to prefer blogging over other social media platforms (such as Twitter, etc.) These are really just offerings for consideration and reflection. I want to note that none of the following are asked with an assumption of being right or wrong, they are simply things to be curious about when it comes to fostering inclusivity and valuing lived experience.

What kind of lived experience does your organization include in their work, team, conferences you participate in, social media presence, podcasts, decision-making, etc.?

If you have testimonials about your treatment program or host annual conferences for professionals regarding eating disorder (or other) educational updates, resources, learning, etc. what stories do you support being told? Are they always stories that reflect well on your treatment program? Where is there confirmation bias in only sharing the stories of those who "successfully" complete a certain treatment trajectory?

Does the research and feedback you obtain about your program include those who drop out, do not follow the recommended course, etc.?

Does your organization assume that those individuals who do not follow your full program or drop out of treatment early only have anger to share?

Do you compensate individuals with lived experience for their contributions?

What do you, as a professional or your organization, look for when collaborating with patient partners (how much of these are credentials or reputation)?

Are there certain situations where professional knowledge, in your mind or organization's values, still trumps lived experience? Is there any chance that there are elements of stigma or bias (as felt by the individual with lived experience) in that, based on their diagnosis, etc.? In my own experience, I have been diagnosed with a personality disorder at certain points in time, that I disagree with. For me, what Western psychiatry may call a personality disorder, I name as trauma. I find power in choosing my own language around my healing process (though I understand the need for a common language in healthcare and research to some degree.) In those same conversations, I have been told professionals do not agree that there is stigma around a certain diagnosis because they do not feel as though they think of it in a biased way, but if you do not live the experience of the diagnosis, you do not get to decide whether there is felt stigma around that. That doesn't necessarily mean that you are not empathetic or caring - it's not a personal attack, it's just a statement about the overall experience of actually living with that diagnosis and experiencing stigma at a systemic, and sometimes individual, level.

When differing information is presented - patients advocating for improved services or raising awareness around service cuts - who do you find your organization believes first? The professional body or healthcare system that is being criticized or the patients?

Where does worry over your own image as a professional or organization lead you to want to avoid participating in a conversation around anything seen as potentially controversial or a "slippery slope?" Does that honour your values as an organization or the people you are aiming to help?

These are just a few opportunities to reflect and there is a LOT of conversation to be had in this area. It is something I (and VIVED) will certainly continue to reflect on and engage in dialogue around. We certainly welcome feedback in that process.

- S.

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