Meaningful Fissures: The Value of Divergent Agendas in Patient Advocacy

This article refers to:

Ethical Advocacy Across the Autism Spectrum: Beyond Partial Representation

Patient advocacy organizations emerged in the 1950s to collectivize patient power and promote patient’s shared interests and rights. Since that time, patient advocacy organizations have grown in number and influence, filling an assortment of roles that include increasing public awareness, providing support to patients and families, building community, and advocating for research (Aymé, Kole, and Groft 2008; Koay and Sharp 2013). It is their role in political activism that McCoy et al. consider in this issue of the Journal, offering an analysis of the autism community and a divide that has emerged between self-advocates and parent-advocates (McCoy 2020).

As McCoy et al. note, parent-advocates and self-advocates tend to see the needs and priorities of the autism community very differently, resulting in divergent research goals and health-policy priorities. In contrast to the authors, who draw on theories of political representation to propose criteria for adequate community representation, we argue that the divergent advocacy agendas found in the autism community are not the result of non-representative voices misrepresenting the needs and priorities of the autism community, but rather a reflection of genuine and meaningful differences in experience. These differing experiences of autism result in multiple, divergent opinions about issues of concern to various autism advocates. We suggest that instead of seeking to consolidate those voices that are not broadly representative of the autism community, we acknowledge this diversity and consider its potential implications for organized forms of patient advocacy.

To support this position, we offer several potential explanations of the self-advocate/parent-advocate schism. These explanations are intended to show that efforts to establish a single, authoritative criteria for representatively speaking on behalf of the autism community are not only problematic but potentially harmful, to the extent that those efforts may marginalize certain voices or understate the diversity present in this community, reducing the diversity of autism experiences to those existentially “thin” concerns shared by all.

One explanation of divisions in autism advocacy can be derived from the work of Paul Rabinow, who suggested that new social identities can emerge from shared genetic, biological, or medical conditions (Gibbon and Novas 2007; Rabinow 2010). There often are real differences in neurological function and other outcomes that correlate closely with differences in the desire or ability to live independently and pursue different life opportunities, even within the same diagnosis of autism. The concept of biosociality explains why multiple forms of autism advocacy would be a natural outcome of these divergent disease experiences, as the lived experiences of self-advocates and parent advocates might give rise to very different identity groups and corresponding social interests, needs, and priorities. As a result, these distinct autism-related social identities could be expected to generate divergent advocacy agendas and corresponding advocacy organizations supporting those differing goals.

A second explanation of tensions in autism advocacy can be found in appeals to intersectionality. In contrast to biosociality, which emphasize shared traits as a formative element in the creation of personal identity and social networks, intersectionality builds on the insight that individuals who share a broad social identity may nonetheless have very different lived experiences that are reflective of intersecting identities (Eckstrand et al. 2016). While sharing in common a connection to autism, individuals who identify with the neurodiversity movement and choose to self-advocate may have an entirely different orientation to autism than those who are represented by parent-advocates. In fact, the differences in social identity and lived experiences may be even greater than that of individuals outside the autism community because self-advocates are navigating from a framework of individualistic independence, whereas individuals who are reliant on parent caregivers are part of an intimate, sustained, and synergistic care relationship where the needs of each party are inherently interdependent (Cridland et al. 2014). Intersectionality theory would suggest that the voices of independent autism self-advocates and the voices of autism parent-advocates are reactions to very different forms of oppression and day-to-day challenges related to autism, which might reasonably prompt very different forms of organized political advocacy.

A final explanation of the divide between parent-advocates and self-advocates is that the medicalization of disability has created a dichotomy between “high-functioning” and “low-functioning” individuals with autism (Lai et al. 2013). These labels, reified by diagnostic classifications, may reinforce differing social identities, as noted above (Jutel and Nettleton 2011). In addition, however, such classifications may influence treatment plans and care-support resources that make assumptions about disease impact or long-term care needs (Volkmar et al. 2014). Whether an individual is judged to be “high” or “low-functioning” will shape social and familial expectations of independence at an early age, and allocate support resources based on these expectations. Differences in diagnostic identity shape long-term expectations, perceived needs, and resource access, and thus may prompt self-advocates and parent-advocates to conceptualize autism in ways that are reflective of these differing expectations and experiences.

Each of these three explanations of the self-advocate/parent-advocate schism provides, at best, a partial account of the emergence of distinct patient advocacy agendas in the autism community—and a fuller, more historically nuanced explanation may very well challenge some of the assumptions we make here. These theoretical explanations each point toward a common conclusion, however; namely, that divergent advocacy agendas are highly consistent with lived experiences of autism.

If this insight is correct, then the tension among autism advocates that McCoy et al. highlight might be viewed very differently. In contrast to the authors, who are concerned about the possibility of non-representative voices redirecting the political will toward special-interest goals that are of relevance to a smaller portion of the autism community, these tensions between autism advocates might be viewed as the product of very real, existentially authentic, deeply rooted differences in the lived realities of individuals in the autism community. Given these differences, it would be deeply problematic to identify a single representative voice or organization that is capable of speaking on behalf of the entire autism community, at least from the perspective of achieving effective and just political advocacy.

These considerations suggest that we should celebrate the broad range of voices in autism advocacy, as they reflect the range of experiences and care needs that exist. While well-intended, efforts to promote greater consistency among competing advocacy agendas may actually be disrespectful to those persons who are living with autism, as those efforts imply that their diverse life experiences and needs can be adequately articulated by others; or worse, that their needs can be reduced to broad goals shared by everyone in the autism community, such as increasing public awareness or tolerance of persons impacted by autism. Even if it were possible to appoint one person or organization to speak on behalf of the autism community, the resultant viewpoint would be a thin and generic representation of the rich diversity of lived experiences present in the community.

Lastly, while our analysis focused on conflicts within the autism community, similar arguments most likely apply to other patient communities. Only by ensuring that multiple subgroups within patient communities have the opportunity to participate in organized advocacy can we foster productive and just dialogue that represents the range of experiences inherent in living with disability or disease. Although the resulting schisms between advocates will complicate patient engagement and may ultimately limit the effectiveness of advocacy efforts by dividing patient communities into smaller, less politically effective subgroups, these are meaningful fissures that should be preserved and celebrated as windows into the diverse lived experiences within patient communities.