It is no measure of health to be well adjusted to a profoundly sick society.
— Jiddu Krishnamurti
func·tion ˈfəNG(k)SH(ə)n/: verb 1. work or operate in a proper or particular way.
As I have various discussions about mental health and disability on the internet, I am disturbed at how many people continue to use the terms “high functioning” and “low functioning” when referring to people with psychiatric or other disabilities. I have heard people refer to their family members as “low functioning.” I have seen these terms used by advocates to bully and discredit other advocates who critique calls for increased levels of involuntary treatment as “high functioning” individuals who don’t know what they’re talking about.
I’ve also heard about the term “high functioning” used by service providers to deny treatment to people who want it because they aren’t “sick” enough. The term “low functioning” is used to deny people voice and choice over their health care decisions. And what’s worse is that many people with disabilities have internalized the oppression and describe themselves in this way.
Language matters. What we think and say ultimately shapes behavior, contributing to discrimination and poor treatment of people with disabilities and mental distress. The increased Congressional focus on the ways in which our country has failed the “seriously mentally ill” similarly divides Americans into binary categories – with the “high functioning” counterpart being the “worried well,” who presumably don’t deserve our attention or help.
In truth, the very nature of our individualistic, perfection and performance-oriented society, and the current abysmal “service” paradigm it has produced, fails us all.
I have been so upset by these terms that I started a Facebook thread about it. The hundreds of likes and comments that I got let me know that the terms struck a deep chord with others as well. Said one commenter:
“Functioning is so much a matter of definition, and I feel that the definition is used as the basis for invalidating the experiences of those who are defined as high functioning, and denying that they require any supports or that their experiences have any value. There is a policy of referring to those defined as low functioning as the ‘truly mentally ill.’ It is a divide and conquer policy…”
Arbitrary categories of “high” and “low” functioning assume that these are fixed and immutable states of being. People may look at me today and assume that I am among the “high functioning” ones. I have a job, I own a home, I am a parent, I pay taxes, and “contribute to society” like a good little citizen. No one would know by looking at me today that twenty years ago, I was not functioning by the above definitions. I saw personal messages from God in billboard signs and in advertisements on the side of buses, and was convinced that at the appointed hour my “sacred role” as “savior of humanity” would be revealed to the world. Sometimes I was in such distress that I was literally unable to communicate with the outside world. I couldn’t go to school, or work, or do any of the things that society expects us to do in order to be considered “high functioning.” And I tried to kill myself several times, which would have ceased all functioning.
What helped me to move “up the scale” of “functioning” was finding true acceptance for who I am, having voice and choice over my treatment decisions, meeting people who celebrated my strengths, and gaining access to supports and accommodations that enabled me to achieve my dreams and goals for my life.
Another commenter concurred with my experience, noting:
“’Functionality’ isn’t a fixed given. What you observe, behavior-wise, is just one piece of information about one given person during one moment of their lives. I was labeled as ‘low-functional’ during a hospital stay. No s–t, I was in the hospital. I was ‘high-functional’ when I was well dressed, articulate, with a full-time job — no surprise there, again. Confirmation bias, much? I bet the folks in the hospital would not have expected me to ‘switch’ functionality levels.”
This comment reflects another fundamental underlying assumption that “functioning” has to do with our expected role as producers and consumers in a neoliberal capitalist economy. Those who neither produce nor consume are considered to be “low functioning.” As one commenter noted, these terms are a
“Remnant of the industrial age, where people are understood as machines now on schedules by time increments…we’ve lost parts of humanity that have nothing to do with having products, producing products or being products.”
Another commenter concurred:
“To reduce humans to beings that “function” at different levels is to measure us as parts in a (society as) machine. ‘He contributes poorly to the economic machine’ and ‘she contributes well to the economic machine:’ this is the perspective of a society that is profoundly sick!”
Thoughtful providers are not always in favor of these terms and lament that they must be used for Medicaid or other insurance billing. Said one of the commenters: “As a professional, I detest labels of any kind. Conditions and situations are always changing. It’s a shame that we must list a [diagnosis] for insurance purposes.”
Another commenter pointed to the unfortunate necessity of using these kinds of labels and terms to gain acceptance and legitimacy in academia:
“It is a deeply ingrained way of conceptualizing ‘gradients of suffering and ability,’ though it is hurtful. I have been shifting my vocabulary slowly and trying to be more mindful. It is hard, too, to be in the psychology world and not use common descriptors, especially if you are only a student. If you are an established PhD, there is more freedom there.”
A much more useful conceptual framework for understanding human difference can be found in the neurodiversity movement. According to Wikipedia:
This movement frames autism, bipolar disorder and other neurotypes as a natural human variation rather than a pathology or disorder, and its advocates reject the idea that neurological differences need to be (or can be) cured, as they believe them to be authentic forms of human diversity, self-expression, and being.
Neurodiversity advocates promote support systems (such as inclusion-focused services, accommodations, communication and assistive technologies, occupational training, and independent living support) that allow those who are neurologically diverse to live their lives as they are, rather than being coerced or forced to adopt uncritically accepted ideas of normalcy, or to conform to a clinical ideal.
One commenter expressed this eloquently:
“I’ve found it helpful to embrace the concept of ‘neurodiversity’ in all people — that each will bloom in their own perfect ecological niche. We should stop insisting on people conforming to fictions of ‘statistical norms.’ Instead we should support people in developing their strengths that will help them to bloom and grow in their niche. We are all connected in the web of life…we all serve specific roles that enrich all of life. So a neurodiverse world needs all perspectives, even unusual ones. People with diagnoses are the orchids and hummingbirds of the mental world, rare and precious living jewels.”
The social model of disability also offers us a far more constructive way of looking at “functionality.” According to its Wikipedia entry:
The social model of disability is a reaction to the dominant medical model of disability which in itself is a functional analysis of the body as machine to be fixed in order to conform with normative values. The social model of disability identifies systemic barriers, negative attitudes and exclusion by society (purposely or inadvertently) that mean society is the main contributory factor in disabling people. While physical, sensory, intellectual, or psychological variations may cause individual functional limitation or impairments, these do not have to lead to disability unless society fails to take account of and include people regardless of their individual differences.
The social model of disability lays the responsibility on society to address the varied barriers to “functionality” that so many people undoubtedly face.
My denunciation of these terms does not in any way deny that people suffer, sometimes in unimaginable ways, nor do I seek to romanticize or “normalize” human suffering. But can or should we truly compare “gradients of suffering” in an unjust world? Imagine what our society would look like if we truly honored human diversity rather than classify people into binary categories of “high” and “low” functioning?
Imagine what would happen if we began to have some respect for the varied ways that people do their best to adapt and function, sometimes with amazing creativity, in a deeply dysfunctional world? I would like to see us cease to blame or shame individuals for their level of functioning in society, and instead work to create a more equitable and just world that meets our basic human needs and human rights.