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.
It is uplifting for me to read this blog and feel it’s authenticity shining through. Had there been a respite like Afiya and WMRLC for me to go to in my trudging through the psychpharmagulag decades I’m sure I could have bypassed some of the many tortures forced on me. If there are any authentic philanthropists out there please back Afiya and WMRLC and lets see respites like this appear where needed. Thank You, Fred
Fred, I know that Dani is planning on coming around soon to respond to comments herself, but I wanted to take a moment to stop in and thank you for your comment here. 🙂 I really appreciate your call to philanthropists, and your support for the work that’s happening at Afiya and through the RLC in general. 🙂 We’re hopeful we’ll be able to turn the budget cuts around, and have really appreciated all the support from the Mad in America community and beyond. 🙂
Hi Fred, Thanks so much for your thoughtful comments =) Especially around the authenticity. We have so much hope that Afiya will continue on strong and that we will have multiple Afiyas soon enough =) It is so important for our centers and groups and trainings and everything else the WMRLC does to retain their funding! Without them, our respite could not do what it does. Thanks again for your support =)
My sentiments, too, Fred. Love the term psychpharmagulag. My first stint was in 1974. I wonder what my life would have been like…
Thanks so much for this post. The video is wonderful.
Thanks, Bevin =) Evan Goodchild worked super hard on the film and we’re so pleased with how it came out. With our current focus on retaining funding for WMRLC we realized we haven’t had the chance to screen the film too much (except for Denmark!), so we’re hoping to get it out there more.
It is beyond cool to read your words here on MadinAmerica (and see Evan’s awesome video!) As a member of the WMassRL community, I am so proud to count Afiya and all of its many healing relationships among our ranks. I appreciate both the clear lines that have been made to clarify what is and isn’t ‘peer support’ and the grey that is maintained so that each person can identify exactly what does and does not work for them individually. The space y’all have created is invaluable!
With Fondness and Solidarity! ~Lisa
Thanks, Lisa! You’re lovely =)
Hey Dani, Sera, and Afiyans- I really appreciate this post, and the fact that you have posed more questions than answers, raise issues and possibilities rather than black and white parameters- and focus on relationships rather than problems to be solved.
Which is, of course the point …
Sometimes changing the world happens one connection, one relationship at a time…
It’s helpful for you remind us all of that, Chris! It can be frustrating sometimes to receive so many calls and only have three spaces at the house with which to support people! But, you’re right. Change is connection-by-connection.
Thanks for your awesome advice when we run into tough situations and all your support!
I recently started a job as a Peer Specialist at a non-profit mental health agency. I am grateful to all those who have written articles such as this to help me clarify my values and beliefs about peer support. I am constantly on guard against my impulse to be a fixer, and I hope that in time I will learn to find comfort in discomfort and uncertainty. For now, I focus on trying to tolerate the discomfort! I suppose that is a step in the right direction.
I am inspired and energized by those who have come before me, thoughtfully paving a new way toward hope and healing.
Hi Katie, you have quite a hard job in a traditional agency as a peer worker. I’m so glad you’re finding support and strengthening of values in these MIA blogs. I feel the same way. Even in an organization like ours, I think it’s super important to continuously look at guidelines and situations that have happened to ensure they are matching up with the overall mission of the organization and of peer work as a whole. Thanks for doing this really hard work right in the belly of the beast! D
Wow, the video really spoke to me. Having just gone through what Marty described, and barely avoiding psych lock up, I can only hope this message will get through. Fortunately, I have a community of loving peers from having worked with them and they were willing to see me through my extreme state by staying with me at home. After 6 previous hospitalizations, I have to say, this was the FIRST time I was able to go all the way through something I think my spirit and soul needed without being drugged out of it and experiencing the awful trauma of lock up.
There’s a “peer run respite” to be opening in this community soon. However, it will be run by a contractor (clinical/medical model) through the County Mental Health department and only serving people who are in the public mental health system. I doubt it will have any similarity to Afiya other than it will be in a house and the people working there will be identified as “peers”. It’s sad, because the vision for this place came from the Soteria model, but the money came through the government. I imagine “compliance” on drug protocols will be one of the first orders of business.
Thanks for the video that makes the differences between clinic and peer respite so clear.
Congratulations on staying out of psych lock-up; that is no small feat. And, for staying off the psych drugs that sound like they don’t help you. For me, it’s been extremely important to move through crises without numbing them in some way (and, it’s my experience that psych drugs can do that, though, I recognize that that’s not true for everyone). It can be an extremely painful process, though, so I really feel you there in a deep way.
I think it would be hard for a clinical agency to match what’s been done at this respite… There are kind, caring people everywhere, but if the threat of involuntary hospitalization or the power over others in terms of administering meds, etc., exists at a space, that just doesn’t sound like a model that works for me. And, I would argue that that’s not a way to run a peer respite. I’m really thankful to be a part of a totally peer-run organization, as it helps us stick to our mission and our core values in a solid way. Things get a little bendy when peer services move into clinical spaces, from what I’ve seen, and you can lose integrity quick.
Thanks for your reply Dani. Yes, moving through crises without numbing is my goal.
I imagine it will be difficult for any respite that is not peer run (from board level all the way through) to maintain anything like what Afiya has done. The respite here will be a house, separate from a clinical space, but how people get there, the process by which they arrive will be very different. Initially conceived as an alternative to entering “the system”, the contract requires it to serve people already in “the system”. Ironic. Thanks again for the great blog and for the work you’re doing.
Very inspiring to watch the film. It’s so important to have people tell their narratives of regaining life and for me also to get an idea of what part Afiya has in that. As a manager of a small respite center in Copenhagen, Denmark, and in a rather traditionel, institutionel setting, it’s very enlightening to see the difference a home and that all of the workers has lived experiences can create.
As at Afiya, our service only have three bedrooms, but we work together with a lot of people in distress who doesn’t need a bed. Our service goes almost five years back and our experience is that crisis always contains emotionel distress and practical challenges such as financial problems, poor housing if any, lack of social contacts, not having a work etc. If nobody else can help we offer a joint effort to solve as many problems as possible and are always excited about experiencing how the problems solved, generates the energy to tackle the more emotionel ones. Not that this can be done in one week, off course.
All the best, Jens
“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?”
Funny how that question is never asked of “traditional” psychiatry. So you bring that person to the hospital and what? The answer to that is almost always – “and then the abuse starts”. It’s great to see alternatives to the current mess but nothing at all would be already an improvement.
What an interesting article. Actually, I’ve never heard about it before. But I see its purposes. Such initiatives should be supported. That’s sad that not enough people know about it. Much more they are interested in different championships https://jbhnews.com/final-results-2018-dominican-republic-pro/20977/ and other stuff.