Eating disorders are a widespread and serious health issue that is often stigmatized and misunderstood. This blog post aims to unpack the ableism inherent in mainstream narratives of eating disorders and propose ways to resist it.

The perception of eating disorders as disabilities is multifaceted, with multiple perspectives, all are valid. On one hand, the current medical model imposes a reductionistic, individualistic and binary lens. On the other hand, a social model of disability offers a de-pathologization of eating disorders.

Identifying eating disorders as disabilities has its pros and cons. On the positive side, it allows for coalition building with other movements for disability justice and fosters community healing. It also aids in addressing access needs that increase the quality of life of those affected.

However, there are also negatives, such as paternalism and infantilization, and a narrative of hopelessness or inability to change, which can lead to callousness or anxiety from healthcare providers.

Ableism manifests in various ways in the discourse on eating disorders. For instance, people with eating disorders are often infantilized, especially in high level of care (HLOC) environments. It’s common practice to treat adult clients like children, such as being escorted and watched while going to the bathroom and not having free access to phones, wallets or other necessities.

In outpatient care, infantilization shows up when providers assume they know what’s best for clients and make treatment decisions for them. Many interventions are also condescending and dismiss the inherent wisdom of people with lived experience of eating disorders (PWLLE) for their own healing.

Another manifestation of ableism is the assumption that people with eating disorders do not have capacity to make decisions. Providers and parents often declare that clients are “too compromised” to make their own choices, which frequently results in ultimatums and coercive interventions. This is a contentious issue, especially in relation to medical aid in dying (MAID). The eating disorder field lacks clarity about the decision-making rights of people with severe and enduring eating disorders (SEEDS), despite case studies proving they have decision-making capacity.

Disabled people frequently have their bodily agency and dignity compromised by the mental health industrial complex. In the context of eating disorders, this can include forced medication, constraints, involuntary nasogastric feedings, rigid meal plans, limitations on movement, and ultimatums about behaviors. These disempowering practices can have long term impacts, including shame and humiliation.

Disabled people are frequently expected to perform “health” in certain ways to assimilate with abled people. There is a paternalistic moralization of a person’s ability to achieve a “full recovery”, wherein people are expected to perform recovery in very specific ways. These narratives rarely take into account individual’s’ recovery capital or resourcing. Both fatalistic and toxically positive narratives can be invalidating and cause shame.

Disabled people are often viewed as either “the good ones” or “the bad ones”, contingent on how much they mask or assimilate in ways that make abled people comfortable. This dynamic is present in eating disorder treatment, with the “villain” being seen as “too sick”, and the “good patient” being compliant and performing normalcy.

It’s crucial for healthcare providers to introspect on their ableism and how it manifests in their perceptions of disabled people and people with eating disorders. They must honor the bodily autonomy and dignity of their clients in all decision-making, which should be collaborative. Providers should defer to clients’ self-definition of recovery, leaving space for nuance and thinking beyond binaries. Rejecting mainstream paternalistic approaches to care and manifesting the value of liberation in care work is fundamental.

For those interested in learning more about disability justice, below are some recommended
resources:

• Decarcerating Disability, by Liat Ben Moshe
• Famished: Eating Disorders and Failed Care in America, by Rebecca Lester
• Care Work: Dreaming Disability Justice, by Leah Lakshmi Piepzna-Samarasinha
• Unmasking Autism : Discovering the New Faces of Neurodiversity by Devon Price
• Disability Visibility: First Person Stories from the 21st Century, by Alice Wong
• The Future Is Disabled: Prophecies, Love Notes and Mourning Songs by Leah Lakshmi
• Piepzna-Samarasinha
• @projectlets
• @neuroabolition
• @rds_for_neurodiversity
• @audhd_therapist
• @mad.subjectivity
• @mercifullymad
• @healthjusticecommons