This editorial can be found in the August 2024 issue of the American Journal of Bioethics
Various social movements of the past 50 years have had a profound impact on notions of liberty and justice. Whether the civil rights movement, women’s rights movement, or LGBTQ rights movement, social movements have changed civil discourse, laws, and ethics. The disability rights movement is no different. Bioethics (its own social movement) owes much of its history to these social movements. One social movement that has garnered greater interest in recent years is the neurodiversity movement. This editorial will define neurodiversity, compare it to medical and social models of disability, and introduce our concept of supported engagement as a potential tool of empowerment and a force for change.
The term neurodiversity has been attributed to the sociologist Judy Singer who coined it in 1998 to describe both a scientific construct as well as a social construct. Others claim that the term neurodiversity was “collectively theorised and developed by autistic activists, primarily in the autistic community email list Independent Living in the mid-1990s”. Over the past 25 years, neurodiversity has broadened from a concept developed by autistic activists and various scholars into a mainstream movement that has manifested itself in broader academic discourse. Neurodiversity has been described as a departure from a strong medical model of explaining various neurological phenomena. For instance, a strong medical model explains autism as a disorder that requires medical intervention designed to treat or cure. Neurodiversity includes various neurological differences such as autism and ADHD. The pathologizing of autism reflects a deficit model of framing autism. Sociologist Peter Conrad has written about the process of medicalization where certain phenomena that were once non-medicalized are now medicalized (alcoholism). He claims that other phenomena that were once medicalized (homosexuality) are now de-medicalized. Medicalization suggests that what is considered a health concern is not simply an assessment based on objective “facts” but rather reflects cultural values and mores.
In contrast to the strong medical model is the strong social model of disability. This model claims that disabled people face barriers not because of physical or cognitive issues, but rather because of the barriers that have been created in and by society. For instance, a person in a wheelchair is not limited because of their physical disability. Rather, they are limited because society has not committed the requisite resources to make the built environment more easily navigable.
The stark differences between these two models have been well distinguished by Patrick Dwyer. Dwyer states that the neurodiversity approach addresses disability in the following manner:
- Disability can be addressed by reshaping environments and society (e.g., by working to reduce stigma) or by changing an individual (e.g., by teaching them adaptive skills).
- Curing or normalizing the disabled person should not be goals.
The neurodiversity approach eschews the extremes of either the strong medical model or the strong social model. Instead, the neurodiversity approach acknowledges and embraces neurological difference but is not committed to a deficit model. This model, however, may not be suitable for all autistic persons as some autistic individuals do require a level of medical support. This does not mean that such individuals are “disordered.” Rather, such individuals need greater support in order to have flourishing lives. This leads to our idea of “supported engagement.”
What Is Supported Engagement?
Supported engagement builds on the concept of supported decision making which is a process whereby “individuals retain their right to make decisions for themselves, with the support of trusted friends and/or family members they choose”. Supported decision-making is a positive trend in that it facilitates decision-making for individuals who may have a cognitive disability to still make their own decisions, albeit with the support of another person. Yet, individuals are not simply atomistic decision-makers. Whether neurotypical or neurodiverse, nearly all people rely on the support of others in their lives, especially when making health care decisions. Supported engagement goes a step farther and looks to the importance of relational autonomy between the individual and their community and broader society to allow those decisions to be truly operational and effectuated, recognizing that decisions about health are inextricably intertwined with other social and relational decisions. The choices an individual makes need to be feasible and supported by the community and society in which they live. This concept recognizes the need for a participatory approach to policy development. With at least 1 in 45 adults being autistic, this is clearly a constituency in need of a voice not only in their own decisions about health care, housing, spirituality and relationships but in how environments are structured and in how they can participate in civic life and civic affairs as elected officials and as voices in the political process.
Supported engagement suggests that neurodiverse individuals need different kinds of engagement at the micro, mezzo, and macro levels. At the micro level, a support person may be needed. To make that micro level decision operational, however, one might need support for decisions about a range of things including but not limited to housing, employment, transportation, and education. For instance, the literature is clear that autistic adults are the most under-employed adults with intellectual or developmental disabilities. This raises the question of whether this is truly the decision of the autistic individual or the result of larger societal forces.
A supported engagement model requires not just a commitment to social justice. It also requires a great deal of coordination in promoting full and flourishing lives for autistic individuals. Helping autistic individuals make their own decisions about their health care is important but this is only one step as health care is so dependent upon many other factors. As Robison and Gassner stated in a StatNews piece last year:
In the face of these desperate needs, it’s time for our community to stand strong and advocate for the services needed for ourselves and families. Wealth, race, or cognitive/educational privilege should not be the deciding factor predicting who survives and prospers in living an autistic life. The rising autism numbers presented by our CDC should be a wake-up call—there are a lot of us, and what’s truly increasing is the cost of ignoring our needs. It is high for us as individuals and for families—and even higher for society.
A supported engagement model recognizes this epidemic of need. But it also goes beyond recognition in that it seeks to ensure that all neurodiverse individuals are given the tools to achieve rich and fulfilling lives. That is the ultimate goal.