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The Problem with Lived Experience


July 17, 2023

“The shift among nonprofits and funders towards valuing lived experience has been a journey,” Anna Verghese, executive director of the Audacious Group, told the Chronicle of Philanthropy earlier this spring. Verghese, whose group includes the Bill & Melinda Gates Foundation, MacKenzie Scott, and the Skoll Foundation, says this shift has been “the result of generations of change makers calling on philanthropy and nonprofits to do better and, more recently, the frank conversations we’re all having.” And they’re putting their money where their mouth is: Audacious announced a $47.5 million grant to a six-year-old nonprofit called “Think of Us,” whose goal is to “break the cycle of incremental and ineffective reform in child welfare, by surfacing the perspectives of those impacted by it—the voice missing from previous designs and reform movements.”

It is obviously a good thing to include people impacted, either positively or negatively, by systems and policies in the policymaking and evaluation process. This approach is increasingly applied in a variety of contexts, and has become particularly popular in the field of child welfare. In addition to private philanthropy, public dollars are also supporting this approach. In a recent request for research  proposals offered by the Administration for Children and Families, applicants are asked to develop an “equity impact statement” that should … include “qualitative input from experts, such as those with lived experience.”

But “lived experience” in child welfare has been solicited and disseminated in ways that distort the conversation and promote policies that ignore data and evidence.

The irony of elevating lived experience is that, while it appears power is devolved to the speaker, power is often held by mysterious ‘Wizard of Oz’ type figures who select ​the people with lived experience to serve on advisory boards, testify to Congress, give media interviews, or otherwise disseminate their story. Individuals and groups with a platform—foundations, journalists, celebrities— are able to select and elevate specific lived experiences in ways your average person cannot. The selection of voices is never viewpoint neutral or without an agenda. The personal story of an individual is used to motivate political or social change and is thus selected based on how much it conforms with the talking points of the person doing the selecting. Advocates who want to reduce congregate care (care provided in group or residential settings) promote stories of abuse in facilities. Anti-abortion advocates share stories of women who regretted their abortions. Those stories are real and heartbreaking, but when and how should they drive social policy?

Most people would agree that social policy should seek to ameliorate social problems while inflicting the fewest adverse consequences—that policies should help more people than they harm. Thus, social policy decisions must consider the average person who would be affected by a particular policy, as well as the range, or variability in potential outcomes. In empirical research, these considerations are accomplished through sophisticated methods of research design including the use of random sampling or sample weighting—which allows researchers to gain confidence that the sample is representative of the population from which it is drawn. Representativeness—which allows for generalizability—is typically a goal of quantitative research, which usually relies on large-scale surveys or administrative records. In contrast, qualitative researchers often collect narrative data through individual interviews, and may sample a smaller number of individuals with different goals in mind. For example, they may intentionally select unusual or rare cases in order to learn more about a specific phenomenon. Such case-studies provide important insights, but they are not intended to characterize the typical experiences of a population.

The importance of understanding sampling is illuminated by a recent study on transracial adoptions. The author, a public critic of adoption, recruited individuals for the study on social media. The 42 individuals who opted into the study shared largely negative experiences of their (largely inter-country) adoptions, and the author concluded that all forms (inter-country, private domestic, public/foster care) of transracial adoption should be banned. But, what does that study actually tell us about the typical experience, or range of experiences, of transracial adoption? Consider the sampling procedure: is it possible—likely even—that people who read the posts of anti-adoption advocates and are active in support communities related to transracial adoption on social media might not be representative of the typical adoption experience. Although this is an area beset with low-quality sampling and research designs, large scale studies and reviews that consider the range of findings across individual studies conclude benefits of both domestic and inter-country adoptions for children in cognitive development, parental investment, and life satisfaction, and few or no differences in psychological outcomes, like self-esteem, for children with transracial versus same-race adoptions. These findings don’t preclude or discount negative adoption experiences highlighted by personal accounts. Rather, one might take seriously both sets of research findings by supporting narrowly-targeted policies to prevent negative adoption experiences while also supporting adoption as an alternative for children who cannot remain in parental care.

Of course, rare experiences should not be ignored and are not irrelevant in policymaking. Policies are made all the time based on rare events—New York City has window guard policies to prevent children from falling out of windows, even though most children would not fall out of windows. The question that should always be asked is this: would a policy that prevents a potentially rare problem cause any significant harm to others? Window guard policies do not harm the children who were never going to fall out of a window. At worst, they incur an inconvenience to landlords.

However, when lived experience stories are presumed, without or despite evidence, to be representative, harmful policies can emerge.  For example, one of the areas where lived experience has had the greatest influence in child welfare is congregate care. Although some people with lived experience touted congregate care as a positive experience for them, the highest profile voices, such as Paris Hilton, have been negative, and the individuals invited to testify to Congress  have also shared negative testimonies.

The people who come forward to share their experience—particularly in a very public setting—are a self-selecting group. The people who have felt that a stint in foster care or even in a group home may have been beneficial to them at a point in their life or was certainly better than the alternative of being in a neglectful or abusive family may not want to come forward. It is not a popular view, nor do those folks want to be seen as publicly criticizing their families. Indeed, those who have had traumatic childhoods but have managed to turn into well-adjusted adults with families and careers of their own may not want to come forward at all. They may value their privacy and prefer to leave that part of their past behind.

Nevertheless, the testimony of the self-selecting group helped to pass The Family First Prevention Services Act (FFPSA)  which limited federal funding for congregate care. This resulted in the closure of several facilities, including facilities with a strong track record of positive outcomes, and a lack of options for children with acute behavioral health needs. Similarly, the lived experience of transracial adoptees has made caseworkers and courts less likely to place children in such settings, potentially longer stays in foster care.

A second problem with the current usage of lived experience pertains to how one decides which lived experiences are more convincing. Imagine that two adults share their lived experiences of being in foster care—one says foster care ruined their life and one says foster care saved their life. Which one is the true “expert” on foster care? Many individuals may simply elevate the person whose lived experience aligns with their preexisting worldview—in this way, lived experience serves to affirm, rather than inform one’s views.

Even those with an open mind may hear a limited range of experiences, as panels or advisory boards will often only have a single “lived expert”, or their experts are homogenous in their experiences. For example, many states have youth advisory boards comprised of adults who aged out of foster care. Youth who age out often entered foster care in adolescence, experience substantial placement disruption, and spend time in group homes. While their perspectives are essential for issues related to aging out, their experiences within foster care have little connection to the over 90 percent of children in foster care who do not age out, a majority of whom entered by age 5 and exit by age 7 and experience neither unstable placements nor group care.

A third—and more controversial—issue is the extent to which the conclusions that an individual draws from their lived experiences are open to the type of critique and questioning to which research conclusions are subjected. The importance of skepticism about personal narratives of lived experience is evident in many areas—when a police officer shoots an unarmed person, they should face questioning on whether their interpretation of the perceived threat was reasonable. Emotional reasoning, cognitive distortions, and negative attribution bias are core concepts in clinical psychology that help us understand how humans use feelings to determine reality, often to our own detriment.

If a person with anorexia says that their life would be better if only people stopped trying to get them to eat, they are not lying, but they are wrong. Few people, upon reading a study showing that a sizable share of adolescents describe sexual encounters with adults as positive experiences, would then support overturning of age of consent laws. Rather, most would conclude that, for whatever reason, the respondents were not reliable narrators. Given a long history of marginalized people not being believed when they disclose sexual assault or racial discrimination, the taboo on challenging lived experience is understandable. However, this taboo is troubling when lived experience, from a small number of individuals whose stories are anomalous within the group they are supposed to represent, is used to motivate policies that will affect many people whose experience is not being represented.

The solution is not to silence the voices of people who have direct experience with policies or the social problems that policies seek to address. However we do need to be smarter consumers of narratives. If we say that selective testimonials of lived experience represent general truths—rather than hypotheses that are open to further inquiry and contextualisation within extant literature—we could be left normalizing child rape and underage marriage.

We also need to hear from a broader, more representative set of voices. At its best, lived experience broadens and deepens the conversation—it could challenge groupthink instead of selectively reinforcing it.  And it can give rise to new ideas and questions that can be systematically studied to learn more about how systems and policies impact people. It can also humanize numbers and statistics, increasing the likelihood that policymakers pay attention. But at worst it can give the public and government officials wrongheaded ideas about research and cause them to institute policies that will cause substantial harm.

About the Author

Naomi Schaefer Riley