Watch this post on YouTube (text is a transcript of the video)

Hi everybody. So today I’m going to be talking about whether clients of non-profit agencies should be compensated when they share their stories to benefit that agency. So first I just want to start out by sharing that the other day I ran into a former client of mine. And this is somebody I worked with probably at least 10 years ago. And someone who really touched me a lot with her experiences and I got to know her pretty well. And so the other day she came up to me in a store and she said to me “did you used to work in such-and-such a place?” And it was a place that I’d never even heard of and I think she thought that I’d maybe been a co-worker of hers, somewhere that she used to work. She knew she knew me from somewhere, but she didn’t know where she knew me from. And of course I have to be very careful as a social worker about having that conversation with people in public.

And so it reminded me of something I want to start out sharing today and that’s that our clients are only defined as clients relative to us, and to being people who work in agencies and have programs and services. So outside of all of those structures, we’re all just people living our lives, and learning things as we go along, and screwing things up, and moving on. And so it was a good reminder of that, that as much as we’re part of people’s stories and they’re part of our stories, there’s a bigger picture to that. And sometimes we get really caught up in thinking of our clients as a group, and being defined by the fact that they are our clients, and assigning characteristics to them based on where we’ve seen them, and seeing them at a point in their life that things may not be going really well. And starting to think that that’s the whole picture about it, and so it’s important for us to be conscious about what we think we know about clients, and the nature and structure of power and how that works in those relationships. If somebody is my client, I may have some power just through the fact that they need my help, or the fact that they have to do certain things in order to receive help through the agency where I work.

And so there’s lots for us to understand and really challenge ourselves on within that. So the other thing is that we really can start to attribute certain experiences and characteristics to our clients based on the group that we put them in, which is artificial. And so we think about serving “at-risk youth” or “single moms” and some of these terms that we use to describe people, and what we think that means. And some of the meanings that we have may not reflect at all how those people see themselves, or how they’re experiencing their lives. So those are just a few thoughts that I wanted to share before I go into this very challenging topic about whether or not people who are our clients, or have been our clients, should receive compensation when they share their stories for the benefit of an agency. Because I think that it all becomes very relevant when we look at the specific experiences that people have.

So I’m going to be sharing a few considerations. And increasingly I’m realizing on these topics that I just don’t have any easy answers. And I say that and the more I go along, the more I don’t have easy answers, but we’re starting to have such really interesting discussions and really starting to know what kinds of questions we should be asking ourselves to make ethical decisions. So that’s fantastic.

Non-Profits, Clients, and Money

So I talk a lot in my work about really needing to understand how clients are experiencing their stories, and how they are experiencing our telling of their stories, and how they experience their relationships with us in that process. We’ve all got so many stories about ourselves, so many stories about other people, and our relationships and experiences and it’s kind of wild to think about all of that, and to work with all of that.

And so my actual topic today is something that I find that people tend to react really strongly to: the idea of clients being paid. And perhaps a little bit in relation to how we feel about clients having to pay for services or clients receiving services for free.  So I think that there’s some relationships there in general about how we feel  about money and how we think about money and how we think about charity and services to  people who we define as being in need. So people really react to this topic about whether clients should receive compensation when they share their story to benefit the work of an agency.

And the other thing is we tend to do this work in a fairly reactive way. We have an opportunity to go out and speak, or to make a documentary, or we’re asked by a funder, or something happens that all of a sudden we need a story to share and we need to come up with somebody. And so because of that we often haven’t budgeted or really planned in advance for doing this work. And then we just do the best that we can with the time and the resources that we have available. And so one of the things I often do when I do work with individual agencies is to help them to plan in advance for that. So thinking about next year’s budget – what are the things we need to consider around expenses and then also what are the kinds of training that our staff might need, how might we work with clients who are thinking about sharing about sharing their stories. So lots of stuff that we can do there to make that a better process.

Client Costs and Accessibility

So jumping into first talking about some of the costs that may be incurred by clients or by agencies within the storytelling process. And so the first consideration that I want to address is whether or not the client themselves is incurring any costs. So if there are any hard costs associated with a client being part of storytelling on behalf of an agency – so for example they are missing work, they need help with transportation, they need childcare, they need parking, mileage, all that kind of stuff – then clients definitely should be reimbursed for those costs, or a solution should be found for them. So those are costs of doing business for an agency so definitely the agency or whoever is requesting the presentation should be doing everything they can to meet those needs.

So the other area of expense that we often run into is a need for translation between languages. I’m a huge advocate of budgeting in advance for translation costs. And the reason is that we want to ensure that everyone who has a relevant story to tell, and who will benefit from hearing a story, has access to being part of social conversation. So that’s very much part of the work that we do as non-profit organizations, and we want to make sure that it’s accessible. So it’s quite frustrating for people who require translation services and who may not have equal access to language and communication in society in general, to then be having to ask in every single situation, and what they experience is that they don’t get called back, they don’t get a response, or they get told no, sorry, there’s no budget for that – and that’s really not the best we can be doing. So planning in advance for the understanding that all is not equal in access to language and communication allows us to be more responsive and actually to be proactive in messaging that we are in favour, and supportive, of accessibility. And so I learned a lot about that working with the Deaf community and ASL translation and at first it was a real stumbling block for me. I really struggled to understand and to respond in a way that was appropriate and respectful and so lots of learning there and lots of things that I can pass along to agencies about that. We see this with all kinds of language translation.

And so the other thing is thinking about storytelling venues and storytelling vehicles. So do we have accessible websites? Are people able to access our messaging in different ways? And thinking about event accessibility – can people get into a building and can they hear, can they participate, all of those kinds of things. So lots of stuff there that I think we should be considering and like I said if we budget in advance, and if we’re proactive about that, and looking for funding sources we can make that a lot of a better experience for people. And there’s a lot that we can do there around working with funders as well.

Valuing Contributions

So thinking about storytelling from the perspective of the client, one of the considerations that I ask agencies to think about is – is everybody else involved in a storytelling project being paid for their time and their participation in it? And the second piece of that is, is the agency likely to benefit financially from the story? So for example, if it’s being told in a fundraising context. So it’s not uncommon, when we look at these scenarios where clients are sharing their stories, often through public speaking or being interviewed by the media, that every single person involved in producing that story and hearing that story is being paid for their time and their participation – except for the person who is actually opening themselves up and being vulnerable and really taking all of those risks. And so there’s a real inequality in that. And from the client’s perspective that’s quite demoralizing and devaluing, I think in many cases. And they often will not feel like they can express that, but I’ve heard that quite a bit that they felt it was exploitive and they felt like “why doesn’t this agency recognize my contributions and if everybody else is good enough to be paid, then why am I not?” And they’ll assign a lot of meanings to that, that the agency doesn’t intend and that’s not how they feel, but we need to understand that nevertheless.

So whether or not we like it, and whether or not we see it that way, we have a societal practice of exchanging money for contributions that are considered to be of value. And even when I do work for free, or at reduced rates for agencies, to help them with this, people will say “well don’t you value your work? Like don’t you expect to be paid, or why would you do this for free when you can be paid for it? And so I think a lot about how we assign those meanings and certainly, for me, value comes in a lot of different forms. But I try to be really conscious about how other people are experiencing that and responding to it. So that is a topic that I think requires a lot more thought on our parts, and again advance budgeting. If we’re going to be compensating people, then we need to have the resources available for that.

Self-Advocates

So I think that, when we talk about people who have been clients of agencies, and who consider themselves to be self-advocates on a particular topic, that there are special considerations. So a self-advocate is someone who has lived experience and expertise that has come through that, and they will speak and share their story deliberately over a period of time, on a particular topic. And often these are people who are part of the disability community, but we see them in all kinds of other things. I’ve seen it in domestic violence, for example. And so these are folks who aren’t just waiting to be asked. They are actually deliberately putting a message out there to advocate to raise societal awareness, to reduce stigma and shame around a particular topic, to help people understand better, and really to change the way that society responds to groups of people.

So self-advocates are a really important group within the ethical storytelling topic for non-profit, and I really like to work with groups of self-advocates just because they’re so interesting, they have so much value to contribute, they’re really keen to know more. I really want to do some work around developing a sort of a Bill of Rights for clients and self-advocates who share their stories. So people who identify as self-advocates often will not share their story without being compensated, and they expect to be compensated at a fair market rate. So whatever someone else who’s an expert speaker coming in or who’s sharing their story in some way, sharing what they know, would be paid, they expect to be paid that too. And I think it’s really important for not-for-profit organizations and for other groups that are requesting this – so an example would be a business that wants to become more accessible to disabled people – to pay for that knowledge. So there’s lots of really interesting work being done on that. Another one would be people who are building websites or that kind of thing who want to ensure accessibility. The folks who are supporting them with their lived experience and expertise really expect that fair compensation and I think that’s exactly right. So I’m a supporter of that.

One of the other special considerations, I think, for the self-advocate groups is that, as non-profits, and as people requesting their stories, we want to avoid trying to impose a script or a particular kind of message. So we need to find out: what is their message? What is it that they are hoping to communicate, and how are they hoping society will respond? And then assess whether or not that’s a fit for the message that we’re trying to share, and just like any partnership – do we have common goals, do we have common objectives? Because if someone is a self-advocate and they have a particular goal in mind, and a particular way that they want to relate to people and have them respond, then to have them sort of forced to adopt our message, which is probably something to do with being aware of the work of a particular message, or giving – giving money, giving time or giving whatever – sometimes it seems like there’s going to be a match. And in fact we have two different sets of goals, or sets of messages that may not be as compatible. So we always want to really work with that.

And I’ve heard some stories from self-advocates who were asked to speak and then when they came out and took part in those initiatives or those events or whatever, they were quite surprised that the message that was being put forth was really different from what they had intended. This is also a really important piece when we get more into talking about the context of messages and preserving that, and making sure that these folks are really involved with that process of planning a story, of story-boarding it, of editing it, and making sure that their message stays in context and that it stays intact. So those are some of the things that I do when I work with self-advocate groups and agencies that want to have self-advocate groups work with them to spread a particular message.

Financial Dependency

One of the things that agencies will often say when I suggest compensating clients for sharing their stories is “well what if clients start doing it just because of the money?” And “is that problematic, or when is that problematic, and how do we manage that?” So we don’t see a lot of agencies right now that are offering, on a regular basis, honorariums. I’d actually like to see more of that, but I think we’re a little ways away from that yet. But I think this is an important question because it’s obviously something that people are worried about.

What I always say is that if you have a client who is doing anything, sharing their story or making themselves vulnerable, in a way that may be against their best interests or their free will, we want to be aware of that. And are they doing that to meet basic needs, or urgent needs? And in that case, that sets us up for coercion and exploitation. And in a future post I’m going to be talking more about coercion, and vulnerability, and capacity to make decisions. But for now I think that we just want to be aware of that.

So I have run a Speakers Bureau in my own work, where clients received compensation, and certainly that was an important part of their motivation. We need to remember that a lot of the people that we serve are experiencing varying degrees of poverty and so certainly financial compensation is extremely relevant to why they are going to do what they are going to do. Just like for all of us, we need to pay our bills, we need to get our needs met. So I don’t think that there’s anything inherently wrong with that, but again we just need to be conscious of the power and the imbalances and the injustices in that situation.

So I think we need to be aware on an ongoing basis, and when we look at ongoing consent, why someone may choose to share their story to help an agency. And are they continuing to be motivated to do things like reduce stigma or raise awareness, or has it become purely financial. So some organizations that do offer honorariums will set a limit on that And they’ll say, you know: “we’ll only have a person share their story up to five times within a given period.” And that helps to make it fair because you can start to have a little bit of a competition between people, or a sense of “well how come she received this much money, and I’ve only received this much” or “how come this person gets asked more than me?” So as part of an overall structure that we would often work on with agencies around maybe supporting everybody to develop their storytelling skills and giving them equal opportunities to participate in storytelling initiatives, those are all considerations.

When there are Cultural Practices around Honourariums and Offerings

If that is the case that it is considered appropriate, customary, traditional to have some kind of offering or honorarium then we always want to fulfill that to the very best of our ability. So keep that in mind when you are asking people to participate in storytelling.

And in some cases it’s also appropriate to offer something besides money. And that may be all kinds of things. I’ve worked with agencies who offer gift cards, for example, and who find that a little bit easier to manage in terms of their budget because it may just be one sort of bulk purchase and it just kind of simplifies things.

Partial Participation

And another thing is if someone decides midway through a storytelling project that they are no longer going to participate, we need to be clear about at what point would they expect to receive compensation. So if their story is never published, for example, because they used their right to drop out and to withdraw their consent, do they still receive compensation.

“Singing for their Supper”

Coming back to coercion a little bit, one of the biggest concerns that I hear from agencies is that clients are asked to tell their stories and they say yes because they feel it’s the least they can do. They’ve perhaps received a free or low-cost service and so they want to pay back the agency. And so in another post that I’m working on, I’m going to be talking more about reciprocity and how we can work with that, you know, that wanting to kind of balance the score and how that’s a natural thing for humans. But this is also very much a concern, because agencies really don’t want clients to feel like they have to, what we often call “sing for their supper” when they are receiving free services. And so we want to manage that carefully. If a client is wanting to say yes out of gratitude and share their story, it’s not necessarily a concern. And in my mind it’s not a concern if they also feel free to say no, without guilt or without fear of repercussion. So if they’re empowered and using their free will to say yes or no, I’m not concerned about that, and I’ll often ask clients a number of questions to try to understand whether or not that’s the case. So most of us have that instinct. We don’t want to receive more than we have given. In some cases we also don’t want to give more than we have received! So there is a kind of a human need for balance in our relationships and for forming our identity around that kind of thing.

So when we’re dealing with that situation, it’s one of the cases where I think offering an honourarium is actually a way of saying to a client, you know “we value your contribution, and we value your story. And you know, what you’ve been through and how others can benefit from that. But we’re giving you an honourarium and we really want you to understand that this is very separate from the relationship that we had before. And that you don’t have to tell your story to pay us back.”

Still More Questions than Answers …

So, like I said in the beginning, more questions than answers. Really it often depends on the particular situation of the agency and the people that they’re working with and that’s why I do like to work with agencies one on one around topics like compensation for clients, and consent, and the process, and what’s appropriate, and what’s in everybody’s best interests. But ultimately, whatever you decide, what I recommend is being transparent about it. Just be clear and consistent in your practices, budget in advance, talk to funders, talk to the people you’re working with, so that the resources are in place and the plan is in place.

So that’s that topic for today. A number of things that I am working on – some that I’ve mentioned already. We’re going to be talking more about coercion and capacity and vulnerability. I’m working on a big project to look at all of the various ethical codes and standards of practice that are relevant in a non-profit setting around something like storytelling. So I’ve got my own ethical code which is around social work but we’ve also got psychology, clinical counselling, marketing, fundraising, and evaluation – just to name a few of the ethical codes and practice standards that we see in our settings. I’m going to be introducing someone that I worked with on a process around informed and ongoing consent, and story-boarding, and just an amazing person whose story has now been produced by an agency. So I’ll be later on hopefully able to introduce you to her and tell you a little bit about what we learned together. And I’m going to also be introducing a fantastic article that I found around reciprocity and storytelling in the not-for-profit sector. So talking more about how we relate to each other as agencies and clients in that process.

So lots of stuff coming up – and thank you so much for watching!