Why We Must Strike the Terms “High Functioning” and “Low Functioning” from Our Vocabulary 

Leah Harris
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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.

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55 COMMENTS

  1. The neurodiversity movement is hurting those of us who genuinely are debilitated due to our autism. Do you even care about that? Not to mention that those of us who are debilitated by our autism need to be able to use the descriptor “low-functioning” so that we can get the supports we need. Without that descriptor, there’s no reason for anyone to think we need any help or support at all. Again, do you care about that? It seems to me like all you care about are autistic people who aren’t debilitated and who can function independently. Well, from an autistic woman who struggles daily with social anxiety, depression, hypochondria, and general anxiety disorder (and yes, all of those conditions were professionally diagnosed), and who can barely work as a result of all of those conditions, I’m not going to stand for that.

        • The author is in no way suggesting we should abandon people to their own devices as you suggest, quite the contrary:

          “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.”

          “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.”

          and most importantly:
          “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.”

          It’s not that we should deny that people have significant problems in adjusting to live in a society. It is about acknowledging that people are different and changing society in such a way that needs of these people are met and they can use their strengths to contribute to our well-being as well. Instead of putting blind and deaf people in institutions (which some people may not remember was a standard not so far ago) we should make sure that these people don’t face significant problems in ordinary lives such as access to public building, access to education, healthcare, information and so on. And that is done through technological and systemic changes but also through education of the wider public about the issues these individuals face and how to help them in an effective way and not in a demeaning “do gooder” kind of way (I know a lot of people mean well but I also know how misguided and offensive some of the interventions can be).

          • “It’s not that we should deny that people have significant problems in adjusting to live in a society. It is about acknowledging that people are different and changing society in such a way that needs of these people are met and they can use their strengths to contribute to our well-being as well.”

            What if people don’t have any strengths, though, or their strengths are negated by their weaknesses? I know that, for me, it’s hard for me to do much of anything most days, due to my depression, and my ability to communicate with others is hindered by my social anxiety. So I’m barely able to work at all, and the work I do (I have a work-from-home job on the weekends that only gives me about 4 to 6 hours of work on average) makes me feel exhausted and stressed. I don’t know if I’ll ever be able to make enough money to support myself. As a result, I can honestly say that I hate having Asperger’s Syndrome, and I wish there could be a cure for it. Yet no one seems to want to help me fight for that cure. No, I’m just expected to continue to suffer. Can you honestly not see how hurtful that is for me?

          • First of all I don’t equate being valuable to society with holding down a job. Secondly, we do not think that people in current system get everything they need to reach their potential.

            Why do you think you don’t have any strengths or are totally unable to use them? You’re communicating with us now, here. There are people (even here at MIA) who are quadriplegic and are able to write books, be activists, work or even travel. Of course they require help of dedicated others but they also give back. I remember a story about one guy who was paralyzed neck down and was trying to get a right for assisted suicide. It turned out that when he got attention and people actually showed up and helped to improve his life quality he not only stopped being suicidal but also became active in many areas of life. That is not to say that I think assisted suicide is never a good option for someone but all too often people have miserable life quality, locked up in institutions while they can lead good productive lives with empathic support.

            Who knows how your life and your “Asperger’s” would be if you were getting the kind of support you need?

          • I think there are many people trying to figure out how to help someone who has “Aspergers Syndrome.” I think the big message here is that it’s very easy to label and dismiss someone, as it seems you are feeling happened to you. I think it’s totally OK to hate having those limitations. What do you think would be helpful? Are you hoping for some medical treatment that would make it easier? Or do you think there are ways you can adapt that would make your limitations less onerous?

            In any case, I don’t think that the concept of “neurodiversity” is meant to say you should not seek or find help with these challenges. I think it is more about saying not to judge someone to be a drain on society or unworthy of help because of a particular label that society has affixed to them. Obviously, it’s only one way to think about it, but it seems to help a lot of people regain some sense of power and control over their own lives. Clearly it hasn’t done so for you. What do you think would help you feel like you’re more in control?

            — Steve

          • “First of all I don’t equate being valuable to society with holding down a job.”

            In order to survive in society, you need to hold down a job. And if you can’t survive, then who cares if others think you’re valuable? Also, do you just not care about how fed up my parents are with having to support me?

            “Secondly, we do not think that people in current system get everything they need to reach their potential.”

            Who exactly is “we”? Also, unless you have a cure for social anxiety and depression, then I can honestly say that I am getting everything I need in order to reach my potential. I have two parents who genuinely love me, a place to live (for the time being), monetary support, and very little stress. I’m my own obstacle. I’m preventing myself from reaching my potential, so why pretend that that’s due to outside forces? Tell me, have you ever actually studied psychology?

            “Why do you think you don’t have any strengths or are totally unable to use them? You’re communicating with us now, here.”

            Yes, because communicating with strangers online (which is making me anxious, by the way) is all you need in order to be successful in life. (And remember that part of success is having a job, since you can’t survive without a job.) I can barely talk to anyone at all. I spend my days isolating myself from the world and I have no friends at all. Talking to others takes a lot of energy, so I can’t do much of it. Tell me, do you even care about how miserably lonely I am, or about how much my isolation limits my ability to get a job? It sure seems like you don’t care about either of those things.

            “There are people (even here at MIA) who are quadriplegic and are able to write books, be activists, work or even travel. Of course they require help of dedicated others but they also give back. I remember a story about one guy who was paralyzed neck down and was trying to get a right for assisted suicide. It turned out that when he got attention and people actually showed up and helped to improve his life quality he not only stopped being suicidal but also became active in many areas of life.”

            Good for him. What does that have to do with me, though? It’s not like I can just magically make friends, you know. Trust me, I’ve tried. Yet I just can’t get over my social anxiety and my lack of interest in making friends. So why pretend that everyone is capable of getting the help and support they need?

            “That is not to say that I think assisted suicide is never a good option for someone but all too often people have miserable life quality, locked up in institutions while they can lead good productive lives with empathic support.”

            Support systems cost money, you know. I feel lucky to be able to afford to see a therapist and a psychiatrist, but I don’t know how much longer I’ll be able to afford to do that, since I won’t be able to live with my parents forever and use their health insurance. Plus, like I’ve said many times, I can’t just make friends. So, once I can’t live with my parents anymore, I’ll be poor and friendless. Why do you expect me to be the least bit positive about that?

          • “In order to survive in society, you need to hold down a job.”
            I agree with what you’re saying. I’m just saying that it’s not us who designed this capitalistic nightmare. In fact if it were up to us many people on MIA have a different vision of society. In some places the idea of minimal guaranteed income is being discussed, that would solve many of the issues. It was voted on in Switzerland not so long ago and unfortunately didn’t pass but there are many ways how people like you could be supported – all that’s needed is political will.

            “Who exactly is “we?”
            I’m speaking about myself and a percentage of people who comment here who I think have similar ideas about today’s society and how it should be improved.

            “I have two parents who genuinely love me, a place to live (for the time being), monetary support, and very little stress. I’m my own obstacle. I’m preventing myself from reaching my potential, so why pretend that that’s due to outside forces?”
            First of all you mention that you’re stressed about being a burden to your parents and so on. That is in itself putting you in a situation of chronic stress which is super bad for anxiety. To me it sounds like you’re in a vicious cycle of “I have autism so I am depressed and unable to overcome my social anxiety, so I can never get a proper job, so I cannot stop relying on my parents…” and on and on. It is self-defeating.
            When I were in my worst moment I just split with a guy who had a toxic relationship with me for years and then decided to leave for a younger chick. My family was miles away, my friends were so overwhelmed that they didn’t want to see me, I didn’t get my contract prolonged so I was unemployed, I just got out of psych ward where I was tortured and tried to kill myself, I had to change my flat because I could not afford my current apartment and I had to apply for unemployment money while being an immigrant and having rudimentary language skills. On top of having panic attacks every hour, insomia, tiredness, depression beyond anything I had experienced before, social anxiety and so on and so forth. I manged to pull through and come to where I am now and I can assure you some people consider it very successful. It was not easy but I did it and I did it mostly because I wanted to be my own person. I could have easily leaned back, get myself committed somewhere, and on drugs and then live the rest of my life on disability benefits feeling sorry for myself (and believe me beside myself I have a lot of people to blame including god/mother nature and blind fortune or rather misfortune).
            In other words: the only way you can break out of it is to fight. Nobody will give you a magic pill that will make you a sociable fearless individual who’s happy and successful. There’s no such pill and there will never be. So yes, you are your own obstacle but you are also your own saviour. Others can only help you (or hinder you – I’ve had a lot of that) but if you lay back and go “I can’t do it, I have autism” nothing will happen. There are plenty of people who were diagnosed with all kinds of things who ended up refuting all “you’ll never be able to…”. They are not different than you, less “disabled”. They are people who through hard work and exposing themselves to things they fear, fighting and kicking, got themselves out.

            “Tell me, have you ever actually studied psychology?”
            No and I don’t need to. If you think that psychologists have some special knowledge about human nature and life than any person with a bit of life experience, empathy and brains does not possess you’re badly mistaken. There are psychologists on this site and quite good ones but from my personal experience people with these degree are on average the least qualified to talk about human psyche (maybe except for most psychiatrists – these guys are beyond the pale).

            “Yes, because communicating with strangers online (which is making me anxious, by the way) is all you need in order to be successful in life.”
            There are people who base their livelihoods on that. Even better they are people who don’t talk to others but barely put their videos or blog posts out there and make money this way.

            “Tell me, do you even care about how miserably lonely I am, or about how much my isolation limits my ability to get a job?”
            Yes I do. I feel truly sorry that I can’t help you more than talking to you here (I live in Europe). But I do think that you are able to break through you isolation. It is scary and it is hard but no one can do this for you. It requires baby steps and patience with yourself. I’d try to start with reading about overcoming phobias by exposure therapy and learning some meditation and relaxation techniques. These sounds like they could be the most helpful.

            “It sure seems like you don’t care about either of those things.”
            Why so?

            “It’s not like I can just magically make friends, you know. Trust me, I’ve tried.”
            I have never made a friend in my life by trying. You make friends in your life by being yourself and not trying. I was always surprised to find out how nice and well-meaning some people are (I always assume the worst) and how they actually think great things about me.

            “Yet I just can’t get over my social anxiety and my lack of interest in making friends. So why pretend that everyone is capable of getting the help and support they need?”
            You’re here. It sounds like if you stay here for a while and talk to people on-line you may actually end up getting support and even friends. There are fora for people who have social anxiety issues. Many people are helped by just finding people like them in the internet and sharing their problems. You’re talking to us and sharing your perspective, that’s already a good first step.

            “Support systems cost money, you know.”
            It costs less than institutionalization. The problem is who is making money and in today’s world options which benefit rich corporations are preferred. I’m sad you’re a victim of that system.

            “Plus, like I’ve said many times, I can’t just make friends. So, once I can’t live with my parents anymore, I’ll be poor and friendless. Why do you expect me to be the least bit positive about that?”
            Because you assume it will be that way and it does not have to be. Believe me, I can understand that line of thinking and I do agree that some people just have tough luck for relationships with others and there’s nothing more annoying that someone who says “oh, don’t worry, I’m sure one day you will find a friend or a lover or …” blah, blah, blah. And you an be the nicest, smartest, prettiest person on a planet and nobody can see a problem with you and you still are lonely and feel powerless to change it. I know that very very well. But in the end the sad truth about live is – everyone is lonely. If you want to have a life you have to first and foremost rely on yourself. You may be lucky and get love and support from others but you never know when your bf will leave you for another girl, your friends decide they don’t have time to help you with your problems, your parents will not support you financially, your husband dies and lives you in debt. These things happen all the time. You have to find your own sense in life and your own meaning. If your meaning is about other people they will always disappoint you. It is like that for everyone, not only for those how have social anxiety or what not. Love, friendships and families are important but they are no rules how to get them and they are not to be taken for granted.

            There’s nothing wrong with you. You’re like so many people profoundly lonely and I feel your pain very personally. But giving up is not going to change it. You have to fight with yourself for yourself.

          • Hi, Hannah!

            You are seeing a psychiatrist but still appear to be suffering disabling anxiety. I assume you are taking medication, but do you feel it is really helping you the way it should be? Is it possible it may even be holding you back? Have you read “Anatomy of an Epidemic,” the book which inspired this website? Some of your comments make me wonder if you are suffering from deterioration of your condition BECAUSE of the drugs.

            I used to be an incredibly shy and socially incompetent person. I do believe it is possible to learn the skills to change that. It’s a lot of work, but I am sure it can be done, as I have seen it done and done it myself. True, I don’t have Aspergers, but I still believe you are a human being with a natural capacity to learn. I hope your therapist is helping you develop these skills.

            You state that you are the obstacle standing in your own way. I found that to be true of me as well. I had to figure out a way to get out of my own way and stop worrying what other people thought of me. I had to get comfortable with the idea that some people would think I’m weird and not want to be around me and that’s OK. I have gotten to the place where I can actually give presentations to big groups of people, even though when I was a kid I did anything I could not to have to talk in public.

            I am glad you have had the courage to post here. I actually do know what it’s like to be afraid to put myself out there. It is good to hear your perspective as a person who doesn’t find the “neurodiversity” concept very helpful. Everyone has their own path, and I send you my very strongest wishes that you will find yours and travel it with the courage that I know you have.

            —- Steve

    • I would like to ensure that Hannah’s viewpoint is absolutely valid and is widely supported within the Mental Health Peer Support movement with Person Centered Thinking as one of our building blocks. I quote Hannah:

      “It’s not that we should deny that people have significant problems in adjusting to live in a society. It is about acknowledging that people are different and changing society in such a way that needs of these people are met and they can use their strengths to contribute to our well-being as well.”

      I do agree that language makes a great amount of difference and at the same time we have to be cautious not to:

      1) invalidate how other persons view themselves – this can only serve as further stigma against that person. People have a right to self-identify – another fundamental element of mental health peer support
      2) funding on various governmental, NGO, and foundation streams is based upon language. Whether we utilize vocabulary such as: mental health illness, SPMI, mental health issues, or other. Forcing vocabulary usage from revenue streams could in effect make such revenue streams unavailable.

      Thank you for the eloquent article Leah and thank you Hannah for commenting on a personal level.

    • That the world runs on money is the biggest illusion that exists. That is a lie that has been told to us for centuries, by RICH people who like to hoard! It’s a false idol, totally transient and impermanent.

      Money is meant for fun, like many things in life are, not for survival, or even for creativity. I came from money, and, even though I produced and accomplished a lot there, that world made me sick and disabled from the pressure. Once I saw past this illusion, and that took work to shift what I though I knew to something much broader, it freed me in all ways, eventually. Again, I had to be diligent in my focus to heal, but I was and it worked.

      Most of my money went to psychiatric care, in the long run, and now I survive very well on a modest fixed income. So, so, so much happier now, satisfied, fulfilled, I know my power, voice, and heart.

      Plus, I’ve created my best and most valued stuff with no money–like a film and a multi-dimensional healing practice. Changed my entire outlook and life being able to do all of this without money. That was a game-changer, in every way.

      Plus, I was able to find the environment that suits me best, so I’m extremely comfortable. I had no money or credit, but I learned in my healing how to make things happen. That’s the miracle after the dark-night-of-the-soul. Everyone has the potential to reach this, if they just relax a bit into exploring the unknown with some flexibility.

      I learned this for the second half of my life, now I can enjoy it fully. The past is an illusion, I’m over it.

      Maybe one day I’ll have more money and maybe I won’t. I don’t care, not at all. I hardly charge for my healing services, if at all, because I love being a volunteer in the world. Money screws that all up. I would never go back to having money if it means giving up my freedom.

      Money isn’t freeing, it’s more imprisoning, like an addiction–it’s never enough, you need more and more, especially if others are making the millionaire’s list and you’re not. I’ve seen people lose their minds over that kind of pressure. No thanks! This is wayyyyy better–healthier and safer. I don’t rely on money, either, for security, but that’s more spiritual in nature, so I won’t go into that here.

      Still, I think it’s a much better reality than: I NEED money. That’s the biggest lie ever told, in this world of many media-related illusions.

      • And btw, I’ve tried to transition from disability a million times but I not only got no support, I got sabotaged in pretty hostile ways by pure stigma and discrimination, from the system and its tangents, which is where my work is relevant.

        So yes, they make you sick, take your money, then leave you stranded on SSD. Ok, well, I’ve certainly made the best of it and it’s turned out to be freeing, because I don’t at all buy into the stigma of ‘disability.’ I know why it’s prolonged for me, that’s completely political, and as it turns out, all of this mess guided me to my freedom and happiness. So really, I have absolutely nothing to complain about, and everything for which to be grateful. The rest is gravy…

        • At the risk of over-posting (I should stop for the day), I did want to bring this full circle to the article. I consider myself to be extremely high functioning, as do those around me, have been for quite some time now.

          However, I’d be curious to know how it appears from observation, if one has no idea what my story is. Would I appear low functioning if the only thing people knew about me was that I was on disability? There is SOOOO much more to that story, one couldn’t possibly assess without hearing some relevant details, which they so often don’t want to hear, for some reason.

          So, indeed, what are we talking about here when we assess high vs low functioning? Judgment calls from sheer ignorance of what is really going on with another person? That’s what it seems like to me. In fact, that would be my chief complaint with mental health care—how they fill in those blanks, from completely projected judgments. To my mind, there’s the #1 disability factor at play…

  2. You make some good points. The word function does seem to imply the ability to work, produce, pay taxes, etc. Perhaps, it would be better to think in terms of levels of distress or suffering.

    The problem with this would be that it is extremely difficult to measure how much another person is suffering. How do you tell if someone is exaggerating or malingering? How can you tell if they are suffering greatly but not sharing their feelings because they are afraid of being sent back to the psych ward?

    It is much easier to measure functionality. Observers can tell if someone is eating, going out, socializing, or working. These actions can be observed by family or professionals.

    When my son first became ill the only thing he did was lay in bed and cry. We didn’t want to continually ask him how he is feeling, so the only way we can measure his recovery is by observing his functioning.

    I agree with you that society should change and make room for diversity but we cannot change the world for our son or anyone else. We can only hope that some day he will learn to accept the things he cannot change and find some happiness in this imperfect world.

  3. I agree that these terms are commonly used pejoratively. “Low functioning” is a PC way of saying “dumb” or “incompetent” or “frustratingly inconvenient.” “High functioning” often means “faking” or “doesn’t really need help” or “low priority.” While I understand the first poster’s concern that these terms are embedded in the system and are required in order to get help, this should not be the case. It speaks to the larger issue of the US social welfare system, where people constantly have to “prove” that they are “really needy” before any help is offered. I much prefer the European system, where people seek out the help they feel they need without having to prove “low functioning” to merit assistance. That approach also allows people to continue to receive support as their “functioning” improves, rather than punishing folks who get better with loss of medical care or housing or financial support because they are now too ‘high functioning’ to deserve it.

    —- Steve

    • I’d not over-romanticize the European system. It’s certainly better when it comes to health care (mostly due to public insurance) but when it comes to social assistance of any kind in many places you’re still treated like a cross between a beggar and a conman. If you add “mental illness” to that it’s probably just as bad as in States. Of course, I can’t speak for the totality of Europe (I mostly mean German-speaking part and Poland where I have either personal experience or friends who have it) but it’s not such a socialist dream as some want to believe we are ;).

      • Oh, don’t go bursting my bubble! I lived in Germany for a year in 1978-79 and had a few occasions to encounter the healthcare system, and it certainly was a lot simpler and less contentious than the US system. My son also was over there in the late 2000’s and was sick and got seen immediately for free. Of course, he still got standard “medical model” care, but no one really asked him to prove he was sick or destitute in order for him to be seen. He was really stunned – he was sure they’d bill him later for being a foreigner using up their resources.

        Of course, I never applied for financial assistance and can’t speak to the level of shame there, and I am sure the mental health system is just as oppressive as ours. But seriously, it would be hard to be more humiliating and degrading than what the US system does to people who need help.

        Thanks for that cross-cultural perspective!

        —- Steve

        • Sorry ;). Of course it also differs by country and region (Austria is different from Poland for instance – and much better). Having a public system is awesome in and of itself but the implementation can really vary.

          However, in social services they tend to look at you as lesser than, especially if you’re an immigrant (you know, lazy immigrants living off welfare). Unfortunately, European welfare system, just like in US is now under attack from the corporate state and benefits are getting cut, public healthcare is getting privatized and so on. The oldest trick in the book is especially effective: underfund, overwhelm with red tape and run to the ground and then tell the public with innocent eyes: “oh the government is not capable of doing these things, we have to sell them to private companies and it will be awesome”. Fortunately, they are not able to fool the majority of people and face a lot of resistance but chipping in on the social safety net and healthcare is happening all over the place :(.

        • Just for clarity, here, there is no shame whatsoever in applying for public assistance, as it is so often needed, at least temporarily (well, to my mind, that should be the case, because if not, it only means we are not tapping everyone’s creative potential, which is tragic in a society, such as ours).

          Yes, there is systemic disregard, stigma, and discrimination projected, but that is the shame of those projecting it, exclusively. No need to take this on, as there is no need to feel any shame or anything of the kind when applying for public assistance when it is warranted. I think it’s wise and heroic, knowing how to utilize your resources. Why not? It’s there for that reason! That’s just good self-care, nothing else.

          I work with clients on public assistance and when they come to me with this issue, which they inevitably do, I suggest that they not take on the shame of others, that’s just good ol’ fashioned stigma. Don’t believe it, just accept your monthly check with gratitude, and live your life at peace from all that stuff. Who needs it?

  4. I agree with your perspective, Leah, I believe it would be a much better world if we all learned to treat others as we would like to be treated and the medical community got out of the business of judging the worth of other human beings, based upon their production and consumption within society at a particular point in time. Since those factors have nothing to do with one’s physical health.

    I was medically declared to be “w/o work, content, and talent” and “irrelevant to reality” – which I would take as meaning “low functioning” – during a time I was a home owner, tax payer, stay at home mother of two small children, active volunteer head of an organization with 250+ volunteers, plus many other volunteer positions, and built up an art portfolio of about 60 paintings, not to mention wrote about 10,000 pages of notes / ideas for a future book. My doctor’s medical record show proof he drugged me up based upon lies from the people who abused my child, and he didn’t “believe” anything I personally told him. Another medical record claimed I was “unemployed.”

    I had no idea the psychiatric industry was in the business of defaming people with mental illnesses, and then creating the symptoms of the mental illnesses with their drugs, merely because a person volunteers their time, and works on long run financial endeavors, rather than working a regular job. What the psychiatric industry is judging people based upon has nothing to do with medical care – one’s production and consumption level within society at a particular point in time isn’t related to physical wellbeing.

    • I was deemed “narcissistic” by a psychiatrists because I was in a PhD program and he decided that I for sure thought I was smarter than everyone else although I never said such a thing, Of course he put that in my papers as a part of diagnosis. The delusional arrogance of these people has no boundaries.

      • At least we’re intelligent enough to point out that the neuroleptics are what cause the schizophrenia symptoms. The poor little psychiatrists apparently aren’t smart enough to know the difference between schizophrenia or bipolar or depression and the central symptoms of neuroleptic induced anticholinergic intoxication syndrome.

        As to the delusional arrogance of the psychiatrists, mine actually declared my entire life to be a “credible fictional story” in his medical records, after I had confronted him with all his delusions that were written in the medical records he had sent to my PCP. What’s the likelihood I’m a “fictional” person?

  5. A state of “low functioning” can be a time of meaningful personal evaluation and re-evaluation that makes later functioning more likely.

    I found my psychotic episode to be very productive, and for months after that I gained a renewed and more realistic perspective on a lot of meaningful issues in my life. I think this “high” and “low” functioning is especially pernicious for women who are expected to dedicate themselves to any number of others and are considered to be selfish when we focus on ourselves to the exclusion of others, and let them take care of themselves for a while.

    • I hope you realize that’s not true for everyone. I mean, I’ve gained nothing from my depression and social anxiety, other than feelings of bitterness and resentment towards those who have it easier than I do, and a profound feeling of loneliness and self-hatred. My depression and social anxiety have also made me almost completely dependent on my parents, which is really wearing on them, seeing as I’m about to turn 28 and they’re tired of having to support me. So count yourself lucky that you were able to be productive at all during your time of low-functioning.

      • Then what is your solution? Is it more of the same? Is it crossing people off because they can’t work full time so they should be put in an institution or close to starving level of disability payment and just left to rot?

        I know that it’s a tough place to be but it’s not a hopeless place because you’re talentless or too disabled to ever become anything. It is because there are no social institutions which can provide you with safety you need and opportunities you need.

        Also (and I hope you bear with me) there’s an element of pulling yourself up. I’m not an extreme libertarian who thinks if you leave people alone they will get out of their misery and if they don’t it’s their problem – quite the contrary. But it’s also a fact that telling people they have incurable brain defects and will never be able to overcome their difficulties and amount to anything is a self-fulfilling prophecy. You’re talking to us as if we didn’t understand what extreme emotional problems feel like. That is not true. Many people here experienced first hand the most horrific delusions, psychosis, suicidal attempts, depression, daily or hourly panic attacks and so on. We know how this feels. But putting someone on disability payment and leaving them there is not a good option. Sure, a person who goes through that needs safety net (I personally survived probably only because being able to rely on unemployment money). But I also know that if I decided to give up and give in to the system I’d be now either dead or in an institution. People like you need support from the government in forms of simple means to live and opportunities and therapy if that makes sense but you also have to have hope and will to pull yourself out of it. And no, it is never perfect. You don’t get to a point when life is roses and unicorns but it does for many people get better. Life is tough for everyone, for some more than others but there are upsides to many things in life, even madness. I have learnt a lot from my crazy days even if that didn’t make me rich and famous. You’re not talentless, you’re not bound to be unhappy and a burden and lonely. There are ways to help you.

  6. I’m probably not going to contribute much to this debate, but I especially appreciate what B is saying. No pill is going to make someone socially outgoing and successful. It is up to the individual to do the work. The labels are huge stumbling blocks. Autism, Aspergers (recently dropped from the DSM), Schizophrenia, etc., cause many people to freeze, and declare themselves virtually “dead” – unable to rise above their diagnosis. They are expected to “be their diagnosis” and live out their lives accordingly. “Low functioning” and “high functioning” – I detest those descriptions, too, because they imply that the person is incapable of moving out of the situation. At the most, one could move from “low functioning” to “high functioning” and yet, it still implies “chronic case.”
    Thanks, wileywitch – I agree, based on what I’ve seen with my relative. “There’s a lot going on beneath the surface even when one is labelled “Low functioning.” Properly understood and handled, it can be a period of consolidation and growth.

    • Look, some of us ARE incapable of moving out of our situations. I’m working my ass off EVERY day and I do not have one iota of systematic support. Why? They do not exist.

      So yeah, I’m low-functioning and that is an accurate label because I’m LOW. FUNCTIONING.

      Wishing these things away hasn’t helped for the past 20 years. Wanting people to call me “Special” hasn’t helped.

        • No! But there are a few things that I absolutely cannot do on my own. I at the very least need financial assistance. Good for you if you were able to find employment that makes your life livable. I cannot, and yet my disability isn’t recognized by SSDI. If “low-functioning” makes them give me the help I need, fine by me.

  7. Even after reading the comments, I continue to be unclear about what others mean by ‘low functioning’ vs ‘high functioning.’ If it’s about money, job, etc., I don’t see how this could be a measure of anything, other than following the ‘rules of society,’ which, in essence, is indoctrination to the norms, for fear of being perceived as ‘different.’ That speaks to internalized shame and self-stigma, which, indeed, is powerlessness and lack of sense of self. Indeed, that is a dreadful feeling, having been there, done it. Getting over the fear of being different is liberating and healing.

    Going against the grain with purpose and self-awareness is what leads to new ground and desirable changes. Being self-accepting, self-validating, and self-loving is what brings clarity, balance, health, well-being and joy. Who cares about anything else?

    • I think “low” and “high” functioning is in the eye of the beholder, someone other than the person to whom the label is applied. It is not something the person would say about himself/herself. I have heard parents refer to their own child as “low functioning.” By that, I take it they mean uncommunicative, withdrawn, poor hygiene, speaking nonsensically, etc. The low functioning person in cases like these has a huge obstacle to overcome to become self-accepting, self-validating and self-loving if others see him/her only as a deficit.

  8. Indeed, if that is how we are perceived as children and identified this way, then I can see how this would become an internalized self-identity, which of course, would haunt until rectified with good healing. That would involve practicing the self-validating approach, and sure, it can require a lot of practice, focus, and diligence to rewrite this internalized message, because the thoughts and beliefs we practice repeatedly become ingrained as neural pathways, . But, we can change this ourselves, with practice, which, personally, I feel it’s essential for ease, clarity, and good quality of life.

    As adults, however, I’ve certainly noticed the variability in my functioning from time to time, but that is only relative to what I know is my usual habit and also my potential. It’s why I’m a bit proponent of know yourself, heal yourself, grow yourself, and forget about what others think, if it doesn’t feel good to you. That’s the kind of specious and sabotaging support we’re trying to replace with genuine compassion and empathy, based on a perspective other than what ‘others’ expect. Relying on the observation of others, as opposed to knowing our own truth, is the essence of powerlessness, and leads to all sorts of co-dependent stuck-ness.

      • I think what I’m trying to say, overall, is that if we go through life seeking approval of others, as is what happens when we grow up feeling ‘disapproved of” (as per certain labels, and more importantly, how we are mirrored back, as children), then we will never know our truth or our full potential. When we can ascend this need to please or somehow placate others with our thoughts, feelings, actions, and decisions, then we become lost, because we are only living for others, not ourselves. To my mind, this would eventually lead to the kind of imbalance and confusion that most people associate with the term “mental illness.”

        When we stop seeking approval and trust our own process unequivocally, defining ourselves as we go, with both, certainty and flexibility, then we learn from our “mistakes,” and can even see how they enlighten us, rather than judge ourselves from them, and we grow. This is clarity and peace of mind, which to me, is mental health.

    • And of course, this belongs attached to my above post. Well, this would be a good example of low functioning this morning! Can’t seem to get my posts right. Oh well, I’m sure that I’ll be back to my normally functioning self, perhaps after I have some tea and take my morning walk in the woods. No harm no foul! 🙂

  9. Language does *NOT* matter when you are an adult with autism.

    What matters is the constant fear of homelessness. The depression. The anxiety. The inability to work. The realization that even the people supposedly here to help you are focusing on pointless academic exercises such as “language matters!” while you yourself are hoping to just make it through another day without constantly thinking of suicide as your only option.

    I’m so tired of “autism is a gift!” and this feel-good nonsense.

    We’re DYING without support.

    And you know what? Call me “low-function”, call me a “stupid retard” if that will get me SSDI.

    Otherwise you can pass me on the street as I’m asking for change because I wasn’t one of the lucky autistics who have rich or supportive families.

    This is good for those who aren’t facing the hell that I (and others) face every single day of our lives.

    So, sorry, this article is nonsense and you are hurting us.

    • Marle, but that is exactly the point. To keep people down. To offer them just enough that they could barely survive and degrade them and call them names in the process and make them feel worthless, powerless and hopeless. That is why welfare programs are cut to the bone and design in such a way that you have to explain yourself at every step and humiliate yourself just to get food. To the point that you’ll accept anything just to get the scraps.

      It’s not against you. The problem is with the f**ed up system, which is designed for that very purpose. And the moment you see yourself and your “feeble mind” as a problem, not the society run by a bunch of power crazy rich psychopaths, you’re working to perpetuate that system.

      I’m not saying you should not take money from government etc. when you very survival depends on it but internalizing the message of being worthless “low functioning” human garbage living off welfare, which has nothing to do with you and everything with what they project on you, is not the way to go. They want you to feel ashamed of yourself and less than because you’re not a glib sociopath who can smile at everyone and us others to his/her advantage with no shame or remorse.

      We deserve better. We deserve a society for us and of us. We are no low functioning, the society is.

      • Perfectly said, every word. Indeed, we deserve better, so a viable option is to create it ourselves. After all, we are the society, us, ourselves.

        I’ve already created this freedom for myself, and will do anything to help others in this regard. I, myself, am sick and tired of the “power crazy rich psychopaths” ruining life for everyone and not caring one bit the harm they are causing to humanity and the destruction to the planet. There is, indeed, a better way. Anyone can write me for more info on this, if they choose to explore this further, [email protected].

    • Marle, So sorry to hear of your struggles in getting financial support so you can have a decent life. Of course, what you say is completely true. If a person does not have the basic necessities of food, clothing and shelter, nothing else seems important.

      You certainly do not sound stupid or low-functioning. Your comment is extremely well written.

      I hope you can find someone in your home town to assist you in accessing these needs. Facebook has many local support groups who might give you some ideas. Have you tried local service groups, churches, Salvation Army, local elected officials? There must be some caring people in your home town who would be willing to assist you in getting the support you need.

      Please come back to this site and share your progress. If you can think of any way that people here at this website can help, please let us know. There are many caring people here who have given me much needed encouragement.

  10. B you pegged it: “we are not low functioning, the society is.” The need to be able to categorize us according to rather arbitrary criteria is not done for our sake, but it sure makes applying for grants or lobbying for next year’s departmental budget a smoother process. All-or-nothing labeling stinks. We have areas where we function better than we do in other areas. It can even vary tremendously day to day. I have a brain injury, sleep movement disorder and assorted other psychosocial diagnoses/issues, making consistent quality sleep my Holy Grail. On my best days I feel like I function as well as I ever did and should absolutely be able to work. But those days are all too rare.

  11. When I accepted the bipolar diagnosis (I have since re-evaluated this, am still unsure), I tried to get help. I could get my drugs from PAP, I had lucidity and clarity to reject overdrugging (fortunately). Financially, I hit between all of the cracks. They wanted me to sell my low cost mortgage/house, to pay more money for rent, because owning assets while “disabled” is a problem.

    I was able to work. Sometimes only 10 hours per week. Sometimes, in a good week – 20 hours. But I worked in accounting, doing books and computerizing records. I made $15 an hour doing this. Because my mortgage was cheap, I could just get by on this. But no dentist, no therapy, no other support.

    This was “high functioning,” and the hospital had a charity program which helped with my mental health (psychiatrist and group therapy – the latter a waste of time). I got no help at all.

    I have since moved to Australia, where I have not filed for disability, despite being often housebound, and unable to produce income, though I do about 10-15 hours a week on the internet as a volunteer.

    I have friends in the USA who have gone from “low functioning” – as in no job, no car, no visible means of support – to “moderately functioning,” as in – part time work, able to pay some bills. This “middle class” of “moderately functioning” equals hell. The system punishes her for being better. She was more supported and flush when she was “low functioning”, and they are pulling the rug out from under her at “moderately functioning.” Her rent is higher, she gets no food assistance, and if she earns too much money (at least that is a sliding scale, and hasn’t come into play yet – but it could) she will lose huge chunks of her disability. She is punished by the medicare requirements of paying premiums (that she never had to pay when she was “low functioning” plus governmental changes).

    So while I understand that “low functioning” and “high functioning” help the government decide what will help – and I understand that this classification is arbitrary and demeaning,

    I would also like to recognize that functioning is a spectrum. And the people in the middle suffer the most.

  12. I understand you view and facts. Perhaps of anything in this current hard reality of the USA, the continued abuse of people not only by words but by deeds. In that the words the definitions grant the actions and mentalities on us, it is a cudgel, used at will.

    On the streets for sure, but the office bureaucrat is no less damaging, if anything more so and less honest in the abuse. I am person who like many understand in the 21 Century the Terrible has Happened. We do not see people anymore we see the label and the label of the products they ware.

    Are words are passionless, empty and dead. The real psychic epidemic is just that – are privacy is gone, or sense of the earth, our sense of self is no bought and sold, not only by the corporations but by the government and media.

    Honestly, the attacks on the mental world or multi dimensional and the news keeps counting the body count of the fallen and words: troubled, homeless and this THAT! So many gunned down and beaten to death from what you put forth that is the horrific now.. from this I understand the Germans of 1938 -45

  13. Leah – Thank you. I am sure you were considering the failure of third person objectivity to capture the intrinsic meaningfulness of the psychologically impaired person’s level of functioning in their own terms. For myself, taking myself as I am and imagining myself as worse than ever or just worse than now and like some earlier times, I can accept the idea that saying “incapacitated” described me, as it still does. But this is because I can reasonably envision increased capacitation, and never couldn’t refer to the chance to improve or regain some particular or general aptitude that had disappeared for me. Or appreciate myself differently and better. Which is part of functioning at my best, indeed. And all these matters of attitude and ability can be pointed to by someone else, fairly enough. But you would definitely have to ask me if I were myself content with the idea of how high or low my functioning was in terms of my own idea of that and how I was doing working at recovery and adjustment and evaluating my strengths and weaknesses on the way. The question would come to first person perspective even to decide the shades of difference between real and perceived levels of functioning.

    Having unusual experiences because of incapacitation or “unsuitability for work” makes for as much of a demand on yourself, as the constantly learning person you are, as having novel experiences that are unusual in the sense that the environmental and social conditions are all unfamiliar to you or unpredictably arranged to serve some purposes you are unprepared to adopt as yours. That is what people leave out of their understanding for us who have a different and trying time of it because the changes happened inside more than outside: that the whole person me is still there recognizing things that count, working at how to act, and how to get to be and have what I want to happen. First that impinges on me– the uniquely demanding situation involving me as less well-adjusted to stressful and uncertain things. Second comes the nearly automatically decided social exclusion and scapegoating. Last are these unhelpful descriptors–no longer just there as they were manufactured to be there. But now really standing as my obstacles. That is the game of mental healthcare: say the words we need to hear patient’s say and have the relationships that do the good we say patient’s need done for themselves–and you’re cured.

  14. More simply, I can’t see how I am working with this conception of myself anymore, that means objectifying my functioning as high or low. Looking at moods as high or low became too narrow, also, and too limiting. Cat moods (ala Desmond Morris) made more sense: alert, aggressive, agitated, defensive, and relaxed. Getting at why the evaluation wasn’t needed hadn’t crossed my mind until your article, and I suppose it would take very easy to do fudging to answer the questionairre that said “Rate your high/low functioning”. But the key thing is how does my routine, or anybody’s routine, go. Very much less jargon-y: Was that my best effort? How was it compared to my expected and hoped for day? Should I change the plan for tomorrow? What might have most helped to know that only my failures today taught me to understand? Thanks again, Leah. (It looks like the first time commenting I was affected by so-called flashbacks and practically unable to feel anything, noticed something wrong but not what. But everything is better now with my uninterrupted awareness of constant stress.)

    “Language matters.” Good empowering examples of that in your article including your perfect words in conclusion.

    • To “B” and Others making similar comments: It saddens me to see all this “boot-strap” mentality in response to Hannah. It takes a great deal of ignorance to compare the issues and experiences of someone without autism to someone with autism. And it’s shockingly insensitive to beat someone over the head with the “if I can do it you can do it” stuff.
      As the mother of a 19-year old son, I would not presume to make the assumptions you all are making. Generally, one cannot walk in another’s shoes, and in the case of someone with autism, that true-ism might reach its zenith.
      Please rest assured, “B”, that I do understand the Article. In fact, for the most part, I agree with it, and I was about to publish it on my FaceBook page. I have been declining all Labels related to my son for all his life, hoping to affect societal change, among other reasons.
      But, I can assure you, that’s the easy part of all this. As Hannah expresses similarly, my greatest fear will ALWAYS be that my beloved son will “progress” — (yes, by standards of the Society in which we live — to the extent that he will be allowed to sleep under a bridge for the rest of his life, once I am gone.
      And please don’t worry about how hard he and I both work, “B”. My son, since he was a child, has worked and will continually work harder than any hundred of you without autism.
      One simplistic explanation: One of you blythly suggests people with autism should try harder to learn the social stuff. The reality is, “learning” for most people is not the same a it is for people with autism. For a person with autism, “learning” is more accurately described as acquiring coping devices. The social stuff will never make sense to a person with autism, and thus, cannot be “learned”, in the traditional sense of that word — i.e., to the point that it’s inculcated and a natural, un-thought part of one’s being. Rather, for a person with autism, it’s a matter of trying to very consciously pretend to be something they are not. Can you possibly imagine how exhausting and stressful that would be — pretending 24/7, and knowing you can’t possibly know all the rules, which seem to be changing all the time?
      Please, “B” and Others of like mind, please re-think your responses to Hannah.

      • Sorry, I have to add this, anticipating “B” and “B”-like responses.
        I am, right now, developing a program (non-profit) with the very same Vision — to change Society — and Mission (to appropriately support Adults with Autism, today) as the Article advocates for.
        I assure you, I understand the Article.
        However, I am stunned to see the cavalier responses to Hannah, all the more so because they are coming from those whom I would have otherwise thought were a sympatico and supportive audience for change that benefits people with Autism, including Hannah.
        Stunned and deeply saddened.
        Our work is even much harder than I had anticipated, but neither I nor my beloved son have ever shirked a challenge, and we never will.
        I respect the difficulties Hannah has faced and her hard work. After 28 years, I cannot imagine how exhausted she must be. Please hear her.
        I hope you will find a second third and fourth wind, Hannah, and then a fifth, etc… Love to You.

      • I think you have misunderstood my comment. I’m not advocating the “bootstrap” ideology – quite the opposite. I’m just complaining that the way the system is designed shames people for seeking government or any other social assistance in getting out of their situation and promotes the feelings of worthlessness and being a burden. Even severely “disabled” people can contribute to society in meaningful ways if given the right opportunity and not being told that they are poor sick people who should accept their fate from the get go.
        People are different and there are certainly people who have a hard time to understand the social context they find themselves in every second of their lives. I feel for them and I don’t say that they should “try harder” and it will all be honky-dory. What I’m saying is that they by no means are less worth to society than “highly functioning” individuals and in some cases worth a lot more. It’s up to us to teach people how to understand one another better and accept the things we can’t “really understand”. People with various forms of “autism” (which by no means is the same thing in any given individual anyway) can do great things and can do a lot of small things too all of which help society grow. Putting them on enough not to starve disability payment and washing one’s hands is not productive.