Beth and I were asked to write a condensed version of a chapter we wrote for a wonderful compilation of writings on Mad Studies called Searching for a Rose Garden. In the chapter we talk about Intentional Peer Support (or IPS). Here we will provide some examples and discussion of this practice.
The stories we tell about who we are are shaped by people and events that have taken place in our life. We make meaning of these stories as a result of all our interactions. But in power-imbalanced relationships, sometimes that meaning has resulted in stories of incapacity, otherness and difference. We seek “help” for this incapacity, dragging old stories along with us. In “helping” relationships, our stories are renamed as “problems.” We work on our “problems,” but what is lacking here is the fundamental shift in our experience of self in relationship to others.
IPS is about creating a power-balanced, relational context in which we can begin to explore and even challenge the stories that we have often been taught. We can name our experiences, and challenge the meaning that we have constructed around those experiences. This fundamentally alters what we think of as “help,” but also challenges social and political constructs of disability.
Here is just one quick example of IPS as a dialogue:
Caitlin and Robert have been talking about their experience with being psychiatrically labeled:
Caitlin: I used to call my sadness ‘depression.’ I felt like something was “wrong” with me. Now I think of my sadness as trying to tell me something important about myself. It has started me on a very different path. I’m curious to know if you’ve had a similar experience with hearing voices.
Robert: Wow, I never thought of it differently before, I was always told it was a sign of psychosis and it usually meant that I’d end up in the hospital. Now that you mention it, I sometimes think that the voices are talking in metaphors and somehow, they make sense.
Meaning is negotiated and power is shared here because Caitlin does not interpret Robert’s experience for him. Instead, she asks him how he makes sense out of hearing voices, affirming that Robert is an expert with power to form his own understanding. By offering her own experience (I use to think of my sadness as depression, but then…) Caitlin opens up possibilities for Robert to create a different interpretation. Robert may never have had an opportunity prior to this to think about his experience as anything other than psychosis.
Creating the relationship that makes these sorts of dialogues possible is what the Three Principles and Four Tasks of IPS are all about. For a more in-depth discussion of the principles and tasks of IPS, we hope you will refer to our book chapter “Becoming part of each other’s narratives” in the PCCS publication Searching for a Rose Garden, edited by Jasna Russo and Angela Sweeney, or in our book IPS: An Alternative Approach. The first chapter can be found here.
Let’s take a look at another example. In the following exchange, Alison is a peer supporter working with Marie. Alison and Marie have created a good connection over the past year that they have been working together. This first exchange is set up to illustrate ways in which Alison assigns, or at least does not question, Marie’s assumed story of illness.
|Alison: Hi Marie! Oh, wow, you don’t look like you feel so good.|
|Marie: I don’t know what to say. Things are just… bad. I don’t know how much more I can take.|
|Allison: Sounds like depression is rearing its ugly head again.||Alison tries to connect but only connects around the assumption that she knows what Marie is experiencing.|
|Alison: Have you been getting out, walking? You know how exercise really helps with your depression.||Alison immediately starts problem solving.|
|Marie: Yeah, yeah. I know.||Both Alison and Marie have been taught how to name Marie’s experience. Marie appears to give in to the story that Alison reflects. She also closes down.|
|Alison: Maybe it is time to talk to your doc about changing your meds?||Alison keeps trying to problem solve|
|Marie: Probably. Yeah, you’re right. Okay.||This exchange has likely taken place before. Marie’s “reality” is that she is ill, and needs medication to treat her illness. She also relinquishes power to Alison. Perhaps she has never considered that she does not need to do this.|
We want to make clear that people have the right to name their own experiences in whatever way is helpful. But too often what happens is that we are not challenging those stories, especially when they are delivered by someone with more power. We wear them as though they are our “truth.”
In the second example Alison and Marie try something quite different.
|Alison: Hi Marie! Oh, wow, you don’t look like you feel so good. What’s going on?||Alison attempts to connect with Marie by acknowledging that she appears to be in a bad place.|
|Marie: I don’t know what to say. Things are just… bad. I don’t know how much more I can take.|
|Alison: That doesn’t sound good. We need to talk about this. You said before that exercise helps.|
|Marie: Never mind. I’m okay. Thanks for your help.||What happened? There is a sudden and immediate disconnection.
For all of Alison’s desire to help, she’s actually created an isolating disconnect in their relationship. Perhaps by just being with Marie, Marie could experience a shift in her experience of intense isolation and sadness. This in turn would let both women experience each other in a deeper way.
|Alison: You know what, I realize that I anxiously just jumped straight into fix-it mode, and I know I find it really annoying when other people do it to me. I’d like to understand better what you are going through. Would it be okay if we try this again?||Alison notices that she has disconnected from Marie and speaks to the disconnection. She admits being anxious. This authenticity will help her as she attempts to reconnect with Marie.
Also, wanting to more deeply and fully understand what Marie is going through, she avoids problem solving, and instead seeks to learn about Marie.
|Marie: Things are really bad right now, Alison. I just want, I just need, I don’t even know — I’m just walking around with this hole in me, or this, this… I don’t even know!||Marie is trying as best she can to communicate, to explain, to be understood in this real place where she is.
You might say that Marie is struggling to put her experiences into words — a story she has carried for a long time, this seemingly inexplicable place of aloneness and isolation.
|Alison: I think I know what you mean. But let me try this out — if that’s okay with you?
Marie: Yeah it’s okay.
Alison: I don’t know what it’s like for you, but for me, it’s like I suddenly wake up and the people who I thought loved me, really don’t even know me… It leaves me feeling empty and alone. Is it like that for you?
|Alison is careful to not diminish Marie’s experience, assuring Marie that she only wants to understand. Alison offers her own experience to compare/contrast with Marie’s, in essence saying, “This is how I think about it, is it like that for you?” Alison lets herself be vulnerable in the same way that Marie is by revealing her own struggles. Marie may or may not relate, but it opens up more possibility for a deeper understanding of each other.|
|Marie: No! No it’s not like that for me at all. You don’t understand…||Alison may feel at this point that she’s hit a wall and is still on the outside. That’s a hard place to be, especially since she has begun sharing her vulnerability in revealing aspects of her own experience.|
|Alison: You’re right, I don’t, really. Maybe I never will. I’d like to find a way to be with each other though. I don’t want to just walk away. I guess I need to feel like we’re in this together, or find a way to be with each other even if we never do find words to say. Would it be okay to just sit here for a while? We don’t have to talk.
Marie: You’d do that? Just sit here with me?
Alison: Yeah. I would.
|Alison begins to talk about some things she wants from Marie, creating shared power in the relationship.|
|Alison: Because I realize that sometimes that’s all I want from others.
Marie: I’d like to hear more about that, Alison.
|Once again, Alison offers her own experience, and continues to speak to her own needs. We feel like the two are “in it together” now. This creates a strong sense of mutuality: a two-way relationship where both people are contributing to their connection with each other.|
|Alison: I think what it’s been like for me is that everybody gets so concerned with what I am saying or not saying that they miss hearing me at all. I’m still alone, and they still feel inadequate, and rather hopeless. I hope this makes sense.
Marie: It does make sense! When you’re having a hard time it makes other people feel uncomfortable, and wanting to fix it. But you know, I need to understand this dark around me, because it’s been here all along, and it is part of me and it matters, and maybe it has some significance. Sounds weird, doesn’t it? But everybody else is trying so hard to get me to use my “coping strategies,” or trying to get me to focus on what I can do now, or on “goals,” or my “outlook.”
Alison: Because it makes them feel better! That’s what I wanted to do when we started. It sure would’ve made me feel better, but you might have tried to get me to go away by saying that you’d try whatever I suggested. Then, I don’t think you and I would have gotten to this place.
Marie: You stopped talking about problem solving and started talking about yourself. Why did you do that? What made you back off trying to fix me?
Alison: Well. I guess I want to be seen, too. I want you to see me. I want to stand with someone who will care to let me explore, too. Besides, this isn’t about you being a patient or client, and me being your therapist or, I don’t know, your fixer. We’re in this together, both of us learning, I suppose — exploring, finding out more about who we are and where we’re coming from.
Marie: That’s really cool Alison, I just want to thank you so much for being honest with me; it has really made a difference.
|Both women are learning about each other, and finding commonality in their experiences.
Alison shares what it is like for her when people around her try to fix her or help her with her “problems.” This furthers her connection with Marie. The key here is that Alison is authentic/real about her experience, she doesn’t make something up to “help” Marie.
Marie then is able to explore deeper because she’s no longer trying to push the “darkness” away.
Alison confirms the nature of their relationship by saying that they are both learning. NOTE: If Alison had said this before they’d really connected, she would probably have created a big disconnect.
Notice here that conversation has shifted. It doesn’t necessarily mean that Marie feels all better but that their conversation has had an impact on her.
IPS is a process of creating the kind of relationships that will let us learn about each other and ourselves and how we come to tell the stories that we do. Learning about each other, rather than assuming that we know each other, levels the playing field; both of us are experts.
In connection, we can challenge the potential limits of the stories we have been taught about who we are. These conversations are not easy. We must be willing to acknowledge our disconnections when they happen, ever strengthening and deepening our relationships.
Intentional Peer Support allows us to have different conversations with one another, which then changes the dominant social and political assumptions. It is in these conversations that IPS can accomplish its real purpose: social change.