By Dani, Director at Afiya
“Okay. Someone is standing on the roof of your respite. It’s thunder and lightening, and they’re saying they want to kill themselves? What do you do?”
This sounds like a game of “What If” being played at a party, yeah? But, friends, I tell you, this was a real question from one of the last conferences where we presented on Afiya. For anyone who’s unfamiliar, Afiya is the first peer-run respite in Massachusetts and it is one of only about 18 in the country. It’s no surprise, then, that people are confused about how we do things. But, it’s not just confusion. I’ve come to realize there is actual defensiveness that arises at times when we talk about what we do at the house. If I’m wearing my activist hat, this can be supremely annoying. However, when looking through more compassionate eyes, I can see how what we’re doing rubs uncomfortably against some people’s commonly held beliefs about mental health and causes discomfort in those who have been doing things a certain way for many years in the field.
We definitely try to do things differently than traditional spaces might do, and it starts right from the first conversation. The person who wants to stay contacts us and that starts a dialogue (in person or by phone) focused on what’s happening for that person and how they’re imagining Afiya might be helpful. Once both those calling and working agree it seems like a good fit, someone is invited to stay. When they arrive to the house, we offer a cup of coffee, tea, food, etc., and show them the house, and their private room. We then ask that, some time in the next few hours, we sit down to fill out a few sheets of paper. And, it truly is just a few pieces of paper. Of those sheets, one asks what would be helpful to do during the stay at Afiya. Mind you, this is NOT to be confused with a goals sheet. Rather, what it’s getting at is understanding what someone believes will support them to move through their tough time. That looks wildly different for different people and there are no real wrong answers. For one person, it may be all about having peace and quiet and getting some much needed sleep, while for another, it may involve having safe space in which to explore frightening visions or voices. Yet another may have concrete tasks they want to accomplish in the outside world (setting up and getting to appointments, addressing housing issues, etc.). And so on. Regardless of the particular person’s focus, a belief in someone’s ability to know what will be most helpful in their lives and what will support them in moving through distress is a crucial part of what we do.
What ensues during the seven days that someone hangs out with us looks different from person to person, but the thread that is common throughout is the mutual support that’s offered. Everyone who works at the space (including all leadership) identifies as having some variety of ‘lived experience.’ And, varied experience it is! Some who work with us have been homeless, addicted to different substances, have withdrawn off of psych drugs, been mistreated by the mental health industry, experienced trauma, struggled with suicidal thoughts, and any number of other struggles life has to offer. This having “been there” seems to create more potential for a truly open and genuine dynamic to form between people staying and people working. In other words, if I’m full of shit, someone staying can tell me so, and if they’re full of shit, I can do the same (in words that will vary based on the relationship formed!). It’s a beautiful part of the peer-to-peer relationship – this authenticity. I would even say that it’s a necessary part of getting meaningful support from another human. We’re not doing each other any favors by hiding our truest selves. This willingness to be vulnerable with another human being takes so much courage and it is the essence of what it means to be a ‘peer.’
While training for a job at a different organization many years ago, I asked if we could share parts of our personal story with people using the service if it seemed relevant in the moment. You know the sound made when someone stops a record short? That is exactly what it was like! The trainer said absolutely not; that this would just be a self-serving action and we were to keep our “boundaries” high during all interactions. I’ll spare you my response (and the story of how I was asked not to come back for training day two), but it brought up real questions for me when I started at Afiya. Was I being a bit selfish in sharing my stuff with people and sometimes getting support from those who were in “crisis”? How much was too much? Time and again, though, I see how sharing my story and hearing others share their stories has really changed the way someone sees themselves and the world. Personally, I can clearly remember times when hearing about someone else’s life has brought enormous relief, hope and humility into my own. In truth, I find myself endlessly touched and changed by others’ accounts of life struggles and triumphs. Is there potential for someone working to take up too much space and over share? Sure. I just don’t think that having rigid limits applied in a cookie-cutter fashion to each conversation one has with someone in a tough space yields anything resembling the authenticity that is crucial to supporting them to move forward.
It’s a good point to touch on, actually: this flexibility of relating. We do not have any set model that we’re working off of at the house. The team has received any number of trainings and we appreciate some more than others (e.g, Intentional Peer Support as developed by Shery Mead and led by Chris Hansen), but we keep things open in order to have conversations stay as organic as possible. We also do not have rigid protocols at the house. We do have guidelines, but these are written flexibly and are real living documents. It seems that rigid rules stem more from fear than anything, and our hope is to move from a place of openness rather than trying to anticipate every tough thing that could happen at the house.
This flexibility includes a comfort with sitting in discomfort. This may sound silly or not possible, but I’ve actually seen myself and others on the team get really good at this. The brain tends toward categorizing, judgment and making things right and wrong. I would say that these are tendencies to work on noticing and letting go of for anyone, but that is especially true for those offering peer support. Sitting in the space of “I don’t know” is tough. It requires courage and trust that what is best will ultimately come to pass (even if it doesn’t look like what we expect or assume). One person’s way of dealing with hearing voices, for example, might not fit with your idea of how it “should” be done, but if it works for them and they are happy with the life they lead, that’s what matters. It also requires a certain amount of humility and sharing of power. Everyone wants to be the person that has the answers, I think; there is confidence and a reaffirmation of one’s importance that can arise from it. But, to be the person who can sit with someone working their way through the murky complexity of life without having to direct that person… Well, that is what we’re all about.
This is difficult work, and it’s certainly not for everyone. That’s why I gave this piece the title I did. Some may think of it as pretentious and, maybe it is, but Afiya (and the Western Mass Recovery Learning Community to which it is connected) certainly is calling for a paradigm shift. As I said, some feel really ready for this to happen. Others are resistant and are digging their heels in. Unfortunately, the money tends to stay with the black and white concepts, too, so finding funding for these ways of seeing the world and distress is not easy. But here we are, making it work.
As much as I hope that at least some of what I talk about above resonates with readers, I know that a bunch of text can’t take the place of seeing things for yourself. In fact, knowing that was one of the driving forces behind our team’s desire to create a film about Afiya and the peer respite concept. So, in conclusion, I also want to offer up our now completed 24-minute ‘Afiya’ film. This video was directed by fellow team member and filmmaker, Evan Goodchild, and further supported with contributions from many throughout our community. I hope that you will take the time to watch and share far and wide.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.