What Happens When You Can’t Get Consent to Share Stories

If you have read my last article on “Consent is a Process, Not (Just) a Form,” you’ll know that obtaining informed consent from our clients is an important part of nonprofit storytelling. But if informed consent is just not possible, what do you do? I’m not talking about those circumstances when a client clearly declines you – we must respect their decision. I’m talking about the many, many, many nonprofits out there that work with people who do not have the capacity or legal ability to give consent. (For a definition of consent and explanation of capacity, see this article.)

First, I want to acknowledge that there are many things one can do to continue telling stories without client consent. These are technically legal, but (in my experience) ethically dubious. Things like:

  1.  Sharing a composite story (which is a story or character that is constructed from details of multiple different individuals).
  2. Sharing stories with anonymized information (changing the name, location, or age so that even the client wouldn’t recognize themselves). 
  3. Sharing stock photos or photos of random people that “represent” the client.

Ironically, these same practices are touted online as Ethical Storytelling guidelines! Of course we want to protect our clients’ privacy and safety, but I cannot endorse these practices. Let me explain…

First, I come from a background in Major Gifts (not Marketing) – where donors ask tough questions and our answers must pass muster. A donor may well say, “That story about Jenny was so powerful – wow! How is she doing now? Did she find a job?” And you know I cannot answer with, “Jenny wasn’t real, but I’m pleased to share that 73% of the women in our program found jobs within three months of graduating.”

In another example, I had just edited a client’s newsletter where the main story centered on the graduation of several scholarship recipients. One photo of a man was prominently featured with no context. I asked the client to add his name, his major, and a quote from him, if available. I came to find that no one in the organization knew who he was – he was not a scholarship recipient, just a random student in graduation attire. I told them to remove the photo and replace it with one of an actual recipient.

Imagine the embarrassment if this man’s friends or family had seen that newsletter (which is entirely possible), and said, “Wow – look at you on there! And I didn’t even know you won this scholarship!” What would he have said to that? “Oh I didn’t get the scholarship, I was just standing in the room when they were taking pictures…”

In a final example, a nonprofit anonymized a client’s story with a random name and some changes to biographical details, and was then contacted by someone who happened to have that same name and biographical background, who was certain the nonprofit had written about them! What an eerie (and embarrassing) coincidence!

I cannot endorse these practices because I have seen them backfire and embarrass our donors, our clients, and ourselves. And…I know you are doing your best! My fellow fundraisers and marketers, you are working under difficult circumstances with so many limitations, so instead of telling you want not to do, let me try to add a few more ideas to your toolbox so you can find real, truthful, authentic stories from people who can give consent.

Instead of interviewing foster children, interview foster parents.
Instead of interviewing 5-year-olds, interview kindergarten teachers.
Instead of interviewing an adult living with dementia, interview their family members or caregivers.

Instead of interviewing foster children, interview an adult who spent time in foster care as a child.

Instead of interviewing students or children, interview alumni and adults who graduated and remember their experience.

Instead of interviewing an adult living with dementia (who may not be able to give consent), interview another adult living with dementia who can give consent and speak to the experience.

The world is a better place as a result of so many people coming forward to publicly share their life experiences and stories. Some of them are celebrities, while others may include professionals or academics doing the day-to-day work of making change. If these people are accessible, seek them out and invite them to share their story, their research, or their professional work with your audience.

If creating new, original content in collaboration with this person is not possible, it is usually ok to use their existing research, interviews, and stories in your communications, as long as that work is publicly available and you cite it properly. If you are using anything longer than a paragraph, you need to ask the publisher or the author for permission to cite it.

One final word

If you are obtaining stories from folks on the periphery, who are not directly impacted by your organization, you do need to make that clear, and you need to ensure that no one claims to be speaking on behalf of another.

Focus on “I” statements – not “They” statements – when it comes to feelings, beliefs, and perspectives. If I am interviewing parents of a child who has a disability, I am listening for “I” statements. “As a parent, I think… I feel…I want….”  But if that parent starts to talk about people with disabilities broadly (“People with disabilities think this way…feel this way…want this….”), and that parent does not experience disability themselves, I wouldn’t use their quote in the story as it may come across as them speaking on behalf of a group to which they do not belong.  If the content is good and the quote is important, back it up with research about prevalence, or find and cite an article where a person with a disability said something similar.

Remember, we have a treasure trove of untapped story potential from people on the periphery of our work, not to mention a wealth of wisdom to learn from them. In addition, we can practice all of the new things we learned about consent with this group, since they are able to provide it!