*Disclaimer: this essay is only intended to represent my own opinions and experiences, and is not reflective of any of my past/present employers – nor is it intended to speak as a monolith on behalf of peer support workers, autistic people, or any other mentioned communities/identities/political movements.

I am a queer/trans/autistic young adult, currently working full-time as a youth peer support worker. I am working within a newly-launched program to better streamline child & youth mental health services, and part of this new program involves bringing peer support workers into the spaces where young people are accessing mental health & substance use services. I think peer support is a radical movement towards self-determination and creating networks of care outside of incarceration, coercion, and expectations of compliance, and I deeply believe in this work and all of us who are doing it. That being said, this is also currently what I’m doing for a “career”, and I depend on the version of peer support that is structured under the systems that “create” these jobs and offer “resources”, such as income towards my basic survival needs. This has been an interesting dynamic I have had to navigate every day, and my intent behind sharing these experiences is to illustrate the complex parts of peer support practice for young people; in short, this is intended to name some dissonance I have been experiencing, as a means of constructive criticism towards building stronger and more sustainable movements. 

Peer support is typically defined as a non-clinical, mutuality-based relationship between folks who share lived experience – namely, the lived experience(s) of being a ‘service user’ within the mental health & substance use ‘care’ systems¹. The roots of peer support come from self-advocacy and activist movements that have always been rooted in resistance, mutual aid, and liberatory politics in the face of a status quo where there are clear divides between mad/sane, well/unwell, teacher/student/, expert/subject; I live in what’s colonially known as the province of British Columbia, where for the past several decades, multiple arms of the provincial government have taken on initiatives to reform the systems of psychiatric care and social services in a way that’s considered more progressive, and that has included funding for several programs to specifically hire folks with lived experience under the role of a peer support worker².

As you can imagine, this intersection between the radical roots of peer support and the systems that dictate access to resources, power, and autonomy, gets fraught extremely quickly.  One notable example of this particular intersection has been the founding of Insite and other overdose prevention sites in the Downtown Eastside of so-called Vancouver, on the stolen territories of the Musqueam, Squamish, and Tseleil-Wathuth people; these overdose prevention sites were created by and for people with lived experience of using criminalized drugs³, working outside of the model of addiction as either a moral failing or a pathologized condition to be treated – and it also exists in its current form as a non-profit program funded by the government and healthcare system, which has given legitimacy on paper that offers specific protections against the business-as-usual targeting and incarceration of drug users. Insite has been running in its current form for just over two decades now and is considered an influential success in the world of harm reduction and non-carceral approaches to substance use. The lifesaving work of supervised use sites – whether licensed, like Insite currently is, or unlicensed – cannot be underestimated, and organizations representing the needs and perspectives of drug users are still constantly threatened by those who seek to benefit from criminalizing and incarcerating people they have deemed ‘undesirables’. We have recently seen this happen in so-called Vancouver over the past five years or so, where there has been a rise in mobilized backlash against the advocacy movements representing people who use drugs – leading to losses such as the city cutting funding to the Vancouver Area Network of Drug Users in the name of maintaining political optics⁴.

With that being said, these crucial victories led by activists with lived experience have now become closely intertwined with the ‘legitimate’ systems of power, and it is now pretty common for nonprofit and government-funded services to include peer support workers as members of a workforce shared with social workers, case managers, clinicians, etc. –  and then that entanglement gets another layer of complexity when the peers we are supporting are part of a population that legally has far fewer rights and space for self-advocacy, as children & youth. 

Peer support as a movement originates coalitions of people who are multiply marginalized and criminalized by laws and policies that have always upheld colonial displacement and capitalist interests. It was championed first by the people who built kinship over the fact that they’d been othered, not by nonprofits and politicians playing the respectability game-  and it was only from peers doing that relentless labour and dedication that we got to a place where the healthcare system and the provincial/federal governments contribute resources and funds to sustain these networks of community care. I believe people first and foremost do mutual aid and peer support because that’s what it means to show up for each other in relationships – and I think that can get so contentious when we try to translate the value and impact of that work into a system of labour hierarchies where these skills are undervalued and under-compensated. 

I don’t want peer support to become a role that requires a specific way of practicing and an expected vision of how the work looks – I mean, I think training and accreditation and circles of practice are vital, because we can’t do this work in isolation and we need to be able to learn from and be accountable to others – but I find this particularly difficult to navigate in settings such as our union’s job evaluation process, where the structure is designed for wage increases to directly correlate with measurable ‘professional’ experience and education. This is all well and good if you can document much of your skill development in these tangible terms – through accreditation, professional development trainings, or the completion of structured courses – but it is much harder to prove a linear path from lived experience towards skills and success in performing one’s job duties. I am in a privileged position in that I have both lived experience and academic credentials – and when I was post-secondary, I was constantly thinking about the differences in traditional, academic, so-called ‘evidence-based’ research versus the people on the ground who were living, experiencing, and processing all the practices informed by research that had been filtered through the lens of legitimacy. Many of us in the autistic community are deeply familiar with this dynamic – hearing a stark contrast between autistic perspectives, which are often suppressed, dismissed, or tokenized, versus the unquestioned legitimacy of the people and systems who hold power over us. This was a huge ethical dilemma I struggled with all through university, wherein I knew that the ways I was able to present and synthesize information was being received largely because I knew how to mask it in the academic conventions, formal language, and methodologies that are seen as ‘objective’, even when it’s well-documented that those conventions are largely rooted in colonial institutions with the intent of maintaining race and class barriers. 

I’m performing my ‘academic mask’ right now, as I write this, because it’s how I feel most comfortable getting words and ideas on a page – because that method of communication has been reinforced as the ‘correct’ one, the one that will get people to listen to me and think my ideas are worth hearing, and that cannot be separated from the ways people perceive me as a white person who has had access to formal education and technology –  and who is, presumably, able to get this information across in ways that don’t outline the ways my bodymind⁵ may or may not fit into expectations of abled/disabled/mad/sane. I want to eventually do a deep dive into the ways those of us who have been labeled hyperlexic, gifted, twice exceptional, or savants (in an academically-valued skill) develop our relationship to neuro-conformity and other systems of oppression and exclusion, but I think that would constitute an entirely different essay⁶.

I feel like this act of academic masking is so illustrative of how I’ve been navigating this space between peer support and educational/healthcare “professional” – I’m performing this hybrid that is fine-tuned to many different perspectives, power positions, and interests, and I’m not sure how much of it can be considered a mask or persona that’s distinct from my ‘core self’ because I’ve been holding myself to external standards for my entire life. I also know part of the actual support I do for the kids has some element of performance – not that I’m being deceptive or dishonest, but for me, meeting someone where they’re at involves a lot of rapid reading/processing/strategizing between the other person’s emotional and developmental state vs my own – and I think part of why I get so exhausted is because I feel like I do more masking and processing and energy-matching amongst the staff representing all these systems of power compared to how I actually exert and manage my energy in interactions with the youth. Then I get frustrated because, on the surface, one would think agreeing to a peer support position for youth would equate to the peer support with the youth being the primary focus of one’s energy and labour. …And then it isn’t, necessarily. 

I’m not entirely sure where to end this because I want to incorporate the sides of me that feel hopeful and supported and like they have something to fight for. I don’t want to come across like this role has been a letdown of my expectations, or that it’s not ‘authentic’ peer support – I think there are many aspects of working at this job that have disrupted the ‘business as usual’ aspects in the labour force that have historically taken a huge toll on me. Being part of a well-established union means I have space to connect with other workers about the ways we could be better supported, and it also means that I have healthcare benefits and space to negotiate my job description and wage increases – which is a major advantage over many of the nonprofits that were explicitly hiring for someone with my degree and formal work experience. I also feel that I’ve had the space to be vulnerable and form authentic relationships with my team in a way that hasn’t always been safe for me to do in more traditional worker/boss dynamics – I mean, I’ve also struggled to figure out how that applies to my boundaries and sense of social expectations, but overall I feel like it’s very normalized to talk openly about our access needs, the ways our mental health impacts the way we show up at work, the times where we feel uncertain or conflicted or disheartened, and I have definitely faced social punishment for showing vulnerability in those areas at past jobs⁷. This is definitely a more sustainable day-to-day routine than other jobs I’ve had; I both feel very fortunate, and also deeply frustrated that it was a matter of luck that I got hired somewhere where I’m being paid enough to afford my meds and housing. What I want to push for, most of all, is for more autistic folks to be hired in these types of peer support positions – both for the sake of having accessible, survivable working conditions, and also because I feel like so many of us would thrive in a position where we show up and provide care and support, without imposing interaction or forcing others to perform to a specific measurable outcome⁸. I think that basis of ethics is a radical contrast to the way many of us have experienced ‘intervention’ and ‘care’, and it’s deeply important to me that we as workers stay rooted and remember the folks who started this work to create futures of self-determination and networks of care between all of us in our wonderful, complex, ever-changing bodyminds. 

Footnotes

1. As defined by Peer Connect BC, a partnership between BCCampus, BC Ministry of Mental Health & Addictions, and a variety of peer advocates and organizations across the province. Visit peerconnectbc.ca for more information. ↩︎
2. A short timeline of how these policies shifted over time has been compiled by Health Justice at https://www.healthjustice.ca/timeline. ↩︎
3.  See PHS’s reflection on Insite’s development and inception at https://www.phs.ca/insite-an-anniversary-of-hope/.  ↩︎
4. Jen St. Denis for the Tyee, https://thetyee.ca/News/2023/01/20/Donors-Step-Up-Vancouver-Council-Axes-Funding-VANDU-Art-Program/  ↩︎
5.  I use the term ‘bodyminds’ as I’ve learned from the works of Leah Lakshmi Piepzna-Samarasinha – their book Care Work has been a major influence on how I think about these topics, and I highly recommend it. ↩︎
6.  Lydia X.Z. Brown has shared some adjacent thoughts on movement-building, respectability politics, and tone-policing in this 2018 blog post at https://www.autistichoya.com/2018/10/neurodiversity-needs-shoes-off-fists-up.html.  ↩︎
7.  Jamie A. Heidel documents these unfortunately very common experiences for autistic workers here: https://us.specialisterne.com/wp-content/uploads/2023/01/Specialisterne-Article-10-Reasons-Autistic-People-Are-Fired-2023.pdf  ↩︎
8.  More info about autistic communication and community-building: Crompton, C. J., Hallett, S., Ropar, D., Flynn, E., & Fletcher-Watson, S. (2020). ‘I never realised everybody felt as happy as I do when I am around autistic people’: A thematic analysis of autistic adults’ relationships with autistic and neurotypical friends and family. Autism, 24(6), 1438-1448.https://doi.org/10.1177/1362361320908976  ↩︎

Credits

“Tapping the Radical Roots of Peer Support” by Tuesday Ferguson is licensed under CC BY-SA 4.0.