Labels are simple terms that help us more easily categorize people. For example, policymakers have used the terms high-functioning and low-functioning to decide which individuals should receive services or funding instead of evaluating individual needs. The Diagnostic and Statistical Manual of Mental Disorders (DSM-V) promotes a label based system rather than a specific needs-based system leading to a social construction of disability or neurodivergence (1). This further perpetuates the system where issues that people with disabilities experience are contextually based and are exacerbated by a society that is built for non-disabled people.
Dr. Christina Nicolaidis gives an example of context through a world where 99% of people are deaf (2). Since society would have no reason to block loud noises, a hearing person may be considered disabled in the context of sensory sensitivity to the constant loud and distracting noises. "
Disability self-advocates commonly ask to be seen more than just a DSM diagnosis. Focus on the DSM diagnosis forces people to fit certain stereotypes and strip away an individual’s narrative. Although the DSM dilutes individualistic neurodiversity, it does serve as a structured and orderly manner to categorize individuals. This helps target more appropriate therapies and support. However, there needs to be less of a focus solely on the DSM diagnosis as something that needs to be cured. Rather, focus can be shifted towards advocating for the resources, accommodations, and technologies that can lessen the contextual burden that exists for neurodivergent individuals. The language and labels we currently use engrain an ableist narrative around the medical model of disability.
Functioning Labels (High-Functioning vs Low-Functioning)
Functioning labels are used to distinguish between levels of neurodivergence “severity” which diminish people to be solely defined by their supposed ability rather than their personal experiences. The terms high-functioning and low-functioning have been popularized to describe depression, anxiety, schizophrenia, autism, and other mental illnesses. Depressed people may be labeled as high-functioning because they are not feeling particularly good about their lives or have sleep disturbance but are still doing their job, cooking for their family, performing normal functions appropriately, etc (3). Whereas, low-functioning may be associated with inability to handle the tasks expected such as not getting out of bed or not going to work.
Person-first vs identity-first Language
When referring to disabled individuals, there is a debate of whether to use person-first or identity-first language; for example, a person with autism vs an autistic person, respectively. The term autistic or disabled shouldn’t be separate from the person and their identity; it is who a person is. In addition, when the term “ person with autism” is used, it sounds more like a bad diagnosis, similar to “a person with a tumor.”
Some individuals prefer person-first language since it puts the human first and doesn’t let the disorder define them. Some individuals prefer identity-first language since it puts their disability first which empowers their disability identity (4). Whether a person first or identity first language is used ranges between different disabilities, such as disabled individuals and individuals with developmental disabilities. Ultimately, what a person hopes to be referred to lies in each individual's hands. If you have the chance to ask someone of which language to use, take the opportunity and ask and affirm each individual’s choice of language.
Some individuals prefer person-first language since it puts the human first and doesn’t let the disorder define them. Some individuals prefer identity-first language since it puts their disability first which empowers their disability identity (4). Whether a person first or identity first language is used ranges between different disabilities, such as disabled individuals and individuals with developmental disabilities. Ultimately, what a person hopes to be referred to lies in each individual's hands. If you have the chance to ask someone of which language to use, take the opportunity and ask and affirm each individual’s choice of language.
Severity of a health condition depends on how much support an individual needs. For example, if someone doesn’t need a caregiver but can’t attend school because of sensory issues, they may need someone to give them a ride to school or work in smaller group settings. Rather than (arbitrarily) using overgeneralizing labels based on ability, we can take the time to understand what support someone will need. Thus, with a support focused system, individuals can manage their disability to the greatest extent and make an inaccessible world more accessible.
Sources
(1) American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). https://doi.org/10.1176/appi.books.9780890425596
(2) Nicolaidis, C. (2012). What can physicians learn from the neurodiversity movement? The Virtual Mentor: VM, 14(6), 503–510. https://doi.org/10.1001/virtualmentor.2012.14.6.oped1-1206
(3) Donovan, L. (2016, December 17). How to Know If You Have High-Functioning Depression or Low-Functioning Depression. ATTN: https://archive.attn.com/stories/13574/expert-explains-low-functioning-and-high-functioning-depression
(4)Identity-first vs person-first language – People with Disability Australia. (n.d.). Retrieved March 20, 2021, from https://pwd.org.au/resources/disability-info/language-guide/identity-vs-person/
(2) Nicolaidis, C. (2012). What can physicians learn from the neurodiversity movement? The Virtual Mentor: VM, 14(6), 503–510. https://doi.org/10.1001/virtualmentor.2012.14.6.oped1-1206
(3) Donovan, L. (2016, December 17). How to Know If You Have High-Functioning Depression or Low-Functioning Depression. ATTN: https://archive.attn.com/stories/13574/expert-explains-low-functioning-and-high-functioning-depression
(4)Identity-first vs person-first language – People with Disability Australia. (n.d.). Retrieved March 20, 2021, from https://pwd.org.au/resources/disability-info/language-guide/identity-vs-person/