People with disabilities experience unique stressors that may contribute to the development and maintenance of an eating disorder. Though there is a lack of research examining relationships between disability and disordered eating, it is clear that eating disorders disproportionately impact some segments of the disability community.          

Disabilities are conditions that significantly impact or limit one or more major life activity. Disabilities come in many forms and impact each person uniquely. They can be physical, emotional, or intellectual; while disabilities are often visually apparent, many people live with significant disabilities that are unnoticeable to others.  The lack of research on disability and eating disorders is particularly unfortunate given the fact that it is estimated that 12.6% of Americans live with some form of disability.  This staggering number makes it the world’s largest minority group (Kraus 2017).

Ableism and Culture

People living with disabilities contend with a cultural bias that views them as fundamentally different and inferior to the non-disabled majority. This prejudice, oppression, and exclusion of people with disabilities is known as ableism. Our culture of ableism tends to make the world feel quite inaccessible and unwelcoming to people with disabilities. Society, at large, frequently does not make the appropriate accommodations for different abilities and needs. As a result, people with disabilities face numerous barriers (both literal and metaphorical) every day. Although people with disabilities make up over 12% of the population, they are noticeably absent from popular culture (Kraus, 2017). Only about 2% of TV and film characters are depicted with disabilities, and those characters are almost exclusively portrayed by able-bodied actors (Woodburn & Kopić, 2016).

The media continues to largely present and glorify a very homogeneous view of body size and shape, strongly skewing toward a tall and slender build. For most people, the bodily proportions over-represented in the media are dangerously unattainable (Bordo, 2003). People with disabilities often experience the same pressures to meet these body standards, are as likely as their able-bodied counterparts to develop eating disorders and disordered body image, but are in eating disorders treatment programs.

There is clearly a need for further research to expand our understanding of the connection between eating disorders and disabilities. While there is ample research examining each of these groups, there is very little examining the intersectionality between the two identities. Being a person living with a disability and an eating disorder is likely qualitatively different than being either a person with a disability or a person with an eating disorder. It is important to understand how those overlapping aspects of identity and life experience impact one another to be able to more effectively assess and treat members of these communities. 

The extent to which physical disability impacts body image, a major aspect of eating disorders, is not clear.  A 2009 study found that women with spinal cord injuries (SCI) may be more vulnerable to body dissatisfaction (related to both appearance and body function) than men with SCI (Bassett, Martin Ginis, Buchholz, & the SHAPE SCI Research Group, 2009). However, researchers found that among men and women with SCI, cognitive, affective, perceptual, and behavioral aspects of body image were all impacted by their injuries. Most participants also reported feeling disconnected from their bodies, not only due to lack of physical sensation, but also feeling emotionally disconnected (Bailey, Gammage, van Ingen, & Ditor, 2016). There is also evidence that patients with eating disorders who have mobility-related disabilities may be especially sensitive to body size if relying on the care of others to help them move their bodies (Cicmil & Eli, 2014). Feelings of being different from everyone around them and perpetually feeling “in the way“ has also been noted to negatively impact body image and disordered eating behavior among eating disorder patients with mobility-related disabilities (Cicmil & Eli, 2014). And people with self-reported “severe” disabilities were shown to experience greater body dissatisfaction than people with self-reported “mild” or “moderate” disabilities, regardless of how long they had been living with the disability (Taleporos & McCabe, 2007). These findings point to a need for greater understanding about how specific disabilities may uniquely impact the way people feel about their bodies.  Notably lacking is research on the intersection of congenital disabilities and eating disorders.    

Another group of researchers found that eating disorders patients who had visual impairments reported profound body image disturbance, primarily perceiving their bodies through tactile sensations (body checking), comments from others, and kinesthetic awareness. Some individuals with disabilities may turn to eating disorders as a means to try to compensate for their disability or as a way to feel a sense of achievement (Cicmil & Eli,2014).  

Intellectual Disability

Intellectual disabilities (ID) are conditions that affect cognitive and adaptive ability. Persons with ID are quite heterogeneous in terms of the specific deficits they experience in social abilities, communication, thinking and reasoning, learning, and problem solving. It is estimated that 1 to 3% of the population lives with a diagnosed ID across their lifespan, but the exact prevalence is difficult to estimate because researchers of ID do not always use the same criteria in determining which individuals to include in their data.  To be formally diagnosed, ID must be apparent before the age of 18*.  Males are more likely to live with ID than females. The extent of support necessary for adaptive functioning determines the severity level for ID.  ID falls under the umbrella of developmental disabilities (DD). Developmental disabilities are early-onset, lifelong conditions resulting in significant functional limitations, but not always intellectual deficits (www.asha.org).

About one-third of folks with ID, and up to 80% of adults with severe or profound ID, have eating or feeding issues such as problems chewing, sucking or swallowing, selectivity of texture or temperature and extreme food pickiness, behavioral disruption during meal times, and rumination or gastroesophageal reflux (Didden, Seys, & Schouwink, 1999; Gal, Hardal-Nasser & Engel-Yeger, 2011; Gravestock, 2000). Those with profound ID may be more likely to experience difficulty with feeding and eating skills and increased risk for aspiration compared to peers with mild or moderate ID (Gal, Hardal-Nasser & Engel-Yeger, 2011). These types of issues can have a severe impact on the health and well-being of individuals with ID, such as aspiration, poor growth, nutritional issues and deficiencies, and/or need for feeding tubes, all of which have major impacts on quality of life and could potentially lead to life-threatening issues. Pica is another type of eating disorder that is more common among folks with ID. Pica is a condition where non-nutritive items are regularly eaten, such as paper, rocks, dirt, etc. Pica can be very dangerous and can lead to malnutrition, intestinal blockage or injury, and even death (American Psychiatric Association, 2013).          

Autism Spectrum Disorders 

Some estimates hold that as much as 20% of people with eating disorders have autism (Wentz et al., 2005).  Research suggests that adolescent girls with anorexia may be more likely to exhibit elevated autistic traits such as difficulty with empathy, tendency to focus on oneself, and strong systemizing traits characterized by inflexibility and the drive to analyze and develop systems driven by rules. Girls who have autism spectrum disorder (ASD) diagnoses may have a unique vulnerability to developing anorexia because they may be directing the systemization toward managing food or obsessing over body weight (Baron-Cohen et al., 2013). Researchers have shown that people with ASD seem to be at a greater risk for developing binge eating disorder (BED), pica, and avoidant/restrictive food intake disorder (ARFID), all three of which are much more common among this population.

Barriers to Support and Treatment

• Difficulty finding appropriate help due to limited specialists dealing with feeding and eating disorders who also have expertise with physical disabilities, ID, AST, and/or other disabilities.
• Treatment for an eating disorder can be quite costly, as is living life with a disability. People with disabilities frequently spend more than those not living with disabilities. People with disabilities are overrepresented in the lowest economic brackets, living on a limited income or government-funded disability payment. Given all these circumstances, finding affordable care to treat an eating disorder can be extremely difficult, as recovering from an eating disorder often takes years of ongoing treatment.
• Simply getting from place to place can be a challenge for someone with a disability, making it especially challenging to access care in the traditional way.
• Medical professionals may overlook signs and symptoms of disordered eating, as they are often overshadowed by, or masked by, other symptoms of the disability. For instance, it is common for individuals who have sustained an SCI to experience significant muscle atrophy which can lead to noticeable weight loss and change in physique. There also can be appetite disturbances resulting from the SCI. Medical professionals (and individuals who see them) could greatly benefit from additional competency training for eating disorders screening among ALL of their patients, including those with disabilities.
• People with physical disabilities are regularly urged to diet and lose weight by medical professionals, often in derogatory or shaming ways, with the intention of increasing mobility.   
• Depending on the type and severity of the eating disorder, many treatment programs require patients to attend for several hours a day, which could cause access issues for someone with a disability. For example, the treatment program schedule may interfere with essential activities of daily living (ADLs) that persons with disabilities must routinely attend to on a rigid schedule, such as bowel and bladder care.

Considerations in seeking support and treatment

• Individuals who need caregivers to help them type or write may prefer to fill out intake paperwork with the help of a therapist instead of their caregiver to maintain privacy. Many therapists have their paperwork digitized so they may be accessed online, which may make it easier for some to independently complete.
• There are more and more eating disorder treatment programs, therapists, and registered dietitians (RDs) offering telehealth options, allowing clients to log-on and participate in group and individual therapy via HIPAA compliant videoconferencing. 
• There are also free online support groups that can be accessed from the comfort of your home.
• It is important to find eating disorder treatment professionals who understand the importance of flexibility with your schedule, to allow for your other self-care needs. which can be time-consuming and often require adherence to a rigid schedule. Take time to discuss your needs, some of which may be time-consuming and required on a specific schedule, with potential treatment providers before committing to one. Treatment will only be successful if you are able to consistently participate and feel comfortable with your providers!

 Special thanks to Dr. Danielle Sheypuk and Dr. Patty Schroeder.