Functional Communication, Disability Rights Theory, and Value-Added Versus Value-Neutral Word Definitions

If this work is helpful, please consider donating or hiring me for consulting work (see more below) 

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In a recent peer forum, the following question was posed...

I’ve found myself using the term “functional language” recently, and it gave me pause. What even is functional? Isn’t all communication functional? 

It brought to mind some unfinished work I've been pursuing exploring a concept I've been calling Value-Added Definitions and Value-Neutral Word Definitions of words and concepts. Latest attempt to explain these thoughts below, using the term "functional" as an example

Value-Added / Value-Neutral Analysis of the Term "Functional" and How it Relates to Ableism

One definition of functional is: "relating to the way in which something works or operates". This is a value-neutral definition of the word. The definition has no statement about "shoulds". It is an observational statement. As the initial question above points out, literally everything we observe is functional in that sense of the word. If your car is broken and not running, it is "functionally broken" because that's how it's currently being and existing in the world.

Another definition of functional is: "having a special activity, purpose, or task". This is a value-added definition of the word. Purpose is ... highly subjective. Highly value-driven. It is judgemental. It is a value statement. We assign a purpose and task to a car - it's meant to move. That is called its "function". If it is observed as not moving, it's now "non-functional". Interestingly, and this can enable so much hidden prejudice and oppression, the assessment of whether the car is achieving its task can, in and of itself, be very neutral and observational. Is the car able to move or not? That's the extent of the supposed "scientific" analysis. Left unasked, unquestioned, and taken for granted is the question - should the car be expected to move? 

When it comes to humans, all manner of ableism and discrimination results from the second definition of functional. Purpose according to who? Tasks meeting the needs of who or what? Far too often, these underlying judgements and baked into, and downright hidden and even denied, under seemingly neutral observations of whether a pre-defined, discriminatory task is being achieved or not.

For example, consider the value-added statement that c. What is this term really saying? It's not made clear whether this is intended as a value-added or value-neutral term, and easily comes off as implying that it's a value-neutral statement. But it's not. Left unexplored and unreferenced are underlying value judgements. Such questions as...

Who is defining the purpose of eye contact?

Is that definition free from bias?

Is that definition accommodating of diverse human experiences and needs?

What we find, using a neurodiversity understanding of autistic social experience, is that many autistic individuals find great discomfort with eye contact. We also find that, for them, it's not a needed part of socializing. If the desired purpose is "socializing", we have a mountain of evidence showing that eye contact is not necessary. Ever had a phone conversation only using audio? See, eye contact wasn't not necessary. So what then is the  statement "eye contact is a functional social skill" actually saying?

If the value-statement is, instead, correctly understood to be asking about "allistic (non-autistic / neurotypical) communication preferences, needs, and understood social norms" then yes, lack of eye contact is non-functional given that value statement. Also, that value statement is deeply ableist, prejudiced, and oppressive when used as the singular expected standard all human communication is judged against. If we instead define functional as "meeting the needs of autistic communication" then the answer is now that no, eye contact is not a functional social skill for many autistics. 

This does not mean that eye contact is useless. As discussed last week, humans are very diverse. Eye contact can enrich the social experience for some humans, while being a living nightmare and deeply distressing for others. Both experiences are valid. Given our knowledge of that diversity, great care must be taken when using a word like "functional". What underlying value judgements are present. Have they been explored? Is there any prejudice or discrimination occurring? When we observe discomfort, are we sure we know the correct root cause? Or did we simply assume one cause (the person is somehow "broken") that only works when employing an extremely biased definition of "functional" - able to meet the needs of the allistic.

So yes, in the sense of "not able to accommodate the needs of the allistic", many autistics are non-functional. And, in the sense of "not able to accommodate the needs of the autistic", most of society still remains non-functional. 

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This article brought to you by the currently unfunded Peer Voices Network. 

Please consider donating to support this work. I am disabled, financially struggling, and am forced by existing social structures into producing content like this for free. I hope those with means and privilege will eventually shift priorities toward increased support for lived experience content generation and expertise sharing. Donations are never required and always appreciated. 

Donate Link: https://ko-fi.com/socialrealitylab

I am also available for consultation work, curriculum development, trainings, etc.. I enjoy partnering with organizations on development of more accurate understandings of social reality. 

Find us on YouTube at: https://www.youtube.com/@peervoicesnetwork

I can be reached by email at peervoicesnetwork@gmail.com

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Photo by Akson on Unsplash

Advocacy Statement To a Member of the NIH Working Group on Disability

Initial Note



Writing today wanting to connect with committee members from the NIH Working Group of Disability regarding follow-up on last December's committee report outlining suggestions for inclusion of people with disabilities in the scientific workforce and in the research enterprise. My organization is well-connected with numerous disability peer communities and looking to build strategic partnerships for following through on report recommendations. Especially in regards to ongoing lack of effective lived experience inclusion in NIH-funded research efforts. 

Initial Reply

I am not completely sure what you have in mind. The NIH Subgroup on Individuals with Disabilities has actually been discontinued now that our report has formally been submitted and approved. Individual members, however, are working hard to continue getting the word out.

My team administers a national survey documenting access to health care and health outcomes among people with disabilities, based on data collected directly from people with disabilities. We would welcome any support in reaching out to possible participants.

In-Depth Answer

Another way to frame the question here is - "how to encourage or hold research institutions accountable for following through on report recommendations?". Am interested in the advocacy and direct action component, which I know can be a tricky subject. Three examples of current work my organization is engaged with include"

•  Assisting with helping a team of behavior analysts at University of Washington launch the Coalition for the Reform of Applied Behavior Analysis, a group whose goals include fundraising for development of inclusivity awareness, methods for how to provide disability-affirming ABA services, and support for direct advocacy initiatives.

•  An example of where an academic institution is failing to follow report recommendations is Boston University. There have been several attempts to ask their leadership team to engage with community members and leadership has repeatedly ignored or only given performative or tokenized support. An example of an ignored request is the following letter: Letter to Boston University Asking for Co-Empowered Peer Inclusion in Public Health Research and Support Efforts

•  Attempts to engage NIH leadership in dialogue about compliance enforcement regarding the grant awardee scientific rigor policy requirement, defined as "the strict application of the scientific method to ensure unbiased and well-controlled experimental design, methodology, analysis, interpretation and reporting of results." There seems to be no effective method of enforcing that policy or holding violations accountable. 

The NIH Subgroup report is a fantastic resource. What comes next? Much of the work above is unfunded and lacks allyship and direct support from the professional research community (including academia, government, and philanthropic sectors). Reports are useful but progress is not truly made until recommendations are acted upon in a concrete and tangible manner. Am thus wondering what the report authors and their broader networks can do to assist with the next stage of the process - ensuring that the research community acts upon the provided recommendations.

If I could perhaps be somewhat blunt, I often worry that the sole main outcome of the survey efforts your team conducts will be to document (or even at times partly misrepresent) the ongoing abuse and lack of support experienced within the many disabled and marginalized communities I am connected with. I say misrepresent because I know with certainty that certain aspects of the disability experience are, broadly speaking, not being captured in current data collection efforts. Though, that's a generalized statement about the field in general and not a specific critique of your specific survey.

These ongoing abuses and lack of support are often justified and enabled by ongoing ableist and otherwise problematic research efforts. Society always calls change and progress "hard and slow" and I find that to be a self-fulfilling prophecy and not an immutable fact. We change by choosing to change, and I'm wondering what support can be had to help make the research community choose to change. 

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Human Minds Are Unique. Carbon Atoms Aren't. Why That Matters When We Talk About Mental Health

If this work is helpful, please consider donating or hiring me for consulting work (see more below). If these ideas are helpful in your work, you are potentially exploiting unpaid knowledge resource development. 

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One one of my peer community discussion forums, the question of "is Attention Deficient Hyperactivity Disorder (ADHD) an altogether helpful category or not?" came up. First, to be very clear, individual subjective perspective on that will differ. One individual might find it useful. Another may not. 

In this article, we're not going to touch on thoughts on that question. Instead, we're going to talk about why we argue it's important to first develop a baseline understanding of the underlying tool being used. In this case - human behavior classification labels. The "under the hood" at what this tool even is seems grossly under-discussed. Hence the creation of this article.

Reading this first, we hope, can lead to better discussion of benefits and problems that arise when these tools are employed, including answering such questions as "is ADHD an altogether helpful category or not?".

This is still a work in progress and is the first layman article I've ever seen tackling this specific issue this specific way. I'm sure it could be improved and look forward to conversation and help in developing this concept further. Ideally some entity will also finally come along and fund this work, as I think it's of great benefit for all manner of human services and research about human health and human lives.

Part 1: Some Things Are Unique, Some Things Are Identical

When it comes to the world of human behavior and psyche, every single individual is at least somewhat unique. This is in stark contrast to many other items and phenomena we find in nature. For example...

•  Atoms of the same element (after accounting for isotopes) are all functionally identical. Literally the exact same properties (melting point, weight, etc.). Predictable.

•  Physical constants are just that - constant. The speed of light. Gravitational acceleration. The sound barrier. All extremely predictable.

Contrast this with objects of study that are unique...

•  Songs. No two songs are exactly alike. There's dozens of properties (melody, instruments used, length, etc.) and even the same song will sound a bit different every time it's played. 

•  Games. No two games have the exact same rules. The classic debate of sport or game has no consensus answer. There's seemingly an exception to any rule category you try to make.

What's happening here?

Categories (classification systems, labels, etc.) can be fantastic tools for navigating the world. We can identify kinds of things. We can discuss what seems similar and what seems different. We can ask questions about why. It helps us talk about and understand (or, notably, misunderstand) the world around us. It helps us predict (or assume, including incorrect assumptions) things about the world around us.

All types of things are not alike though. Some sets of things are, essentially, identical. Some things aren't.

What may, surficially, see like the exact same task - "create a set of categories" - is actually two very endeavors. One endeavor classifies sets of unique things (games, songs, etc.). One endeavor classifies sets of identical things (atoms, laws of physics, etc.). 

And the critical thing to understand is that these two kinds of classification - Unique Items Classification and Identical Items Classification - are very different tools that offer very different kinds of observations and potential utility. 

Part 2: Unique Items Classification and Identical Item Classification

Category systems for sets of unique things and category systems for sets of identical subsets of things are very different tools. Not wholly different of course. Both are attempts to say something about the world around us. Both have great use in their own way and potential for danger if used carelessly. Most tools are like that.

I've observed that most people have never thought about the fact that we have at least two fundamentally different kinds of classification tools. Most people seem to either assume classification is all one sort of thing, or just haven't put much thought into it at all.  Here's why we should all care...

Identical Item Classification (Guarantees)

Think about water. What do you know about it? Leaving aside important technicalities about impurities and differences in external environment (such as altitude), we know that...

•  It boils at a certain temperature

•  It's commonly found in liquid form, and all liquids behave certain ways (they flow, etc.)

•  It's necessary for human life

All these things are guarantees. The concept of water is a guarantee. When we say things about the substance, it's a certainty. When we find a thing in the world where there's many of that thing, there's something about them that's predictably identical with certainty, and we name it, that's an example of an Identical Item Classification (IIC). Some things have layers to this. The periodic table for example is multi-layered list of IIC systems. There's individual elements. There's groups of elements (hence the term periodic) representing various electron shell levels and how full or not full those shells are. There is, in practical terms, absolute certainty. If you remember your basic chemistry, you may also be asking about metals and non-metals. Interestingly, those are not certain. They are something else. Which leads us to...

Unique Item Classification (Likelihoods and Rough Similarities) - UIC

Think about music genres. What do you know about them? Say someone mentions that they like blues songs and blues albums. You want to give them a gift. You go find a blues album. Do we know for sure they'll like that particular album or any/all the songs on the album? No, we can never say that for certain (not unless it's an album they have already confirmed they like).

If a person like blues music, there is exactly zero guarantee that they'll like a specific blues song. And part of the reason why is - what exactly is a blues song? There is no exact definition. There is no singular attribute they all share in common. Songs are unique, not identical. Because of this uniqueness, it is impossible to define a classification that will guarantee they are ever a certain thing or not.

We can classify things as, for example, having human vocals. The concept of "a non-computer-generated, live, human voice on the album" is a guarantee. That is an Identical Item Classification category we can define. But a music genre is not. So, what then is it?

Welcome to the weird, strange world of Unique Item Classification (UIC).

I have thus far, after years of searching, never found a common layman description of this phenomena.  We all use it every day. It exists and is real. And yet, near as I can tell, we have never popularized this distinction as a concept to know about. Nor talked about the difference between UIC and IIC classifications and why that difference matters (more on the history of UIC as a concept below).

The History of UIC 

The closest historical reference I've found that aptly describe UIC as a feature historically can be found in the annals of philosophy. Which, as a field, can be a deeply practical at times. It's not all "are we living in the Matrix", thought some of it is and a lot of it isn't communicated very clearly. It's hard to communicate ideas that haven't been invented or described. Think of them like prototypes. The first attempt at a rocket wasn't awkward and flawed. Same thing with concepts. 

So, going through this history, we can find that in the 1800's a philosopher named Arthur Schopenhauer coined the term "family resemblance". Several others would reference the term over the years, but it wasn't until 1953 that it was most prominently explored and popularized (at least with in philosophy) as a concept in the 1953 publication Philosophical Investigations by Ludwig Wittgenstein. The concept, as the name suggests, uses example of human families to describe UIC. You can read more on that history here...

Wikipedia Entry on Family Resemblance

These philosophers observed that we can often guess if two people are related by blood because they often resemble on another. It's a perfect, relatable example of UIC in action. Families share a likelihood of similarity, though never a guarantee. They are somewhat likely to physical characteristics. They sometimes share a likelihood of personality (and the great unanswered question of what part of that is nature versus nurture). They share in family culture and thus a likely, though not guarantee, have similar cultural behavior. 

Similarity also doesn't mean exact. A tall father may have a tall son, but not the exact same height. A mother may share a similar sense of humor with her child, but not the exact same sense of humor. UIC in action. 

Concluding Remarks

I have much more to say and explore with this topic, so this article is meant to be an initial prototype starting point.

This includes exploring additional nuance. Are these the only two category types? I think there are others we could identify. For example, a third type of classification is one where we can offer a guarantee of a range instead of a specific singular measurement. Light is a classic example of possessing a known (guaranteed) range of possible values. Each photon of light travels at a given wavelength (wavelength is an ICC concept). If you remark that "hey, over there is some light", that doesn't tell you anything about what specific kind (i.e. wavelength) is over there. But it does let know to expect, as a guarantee, that some set of one of more wavelengths of light are present. Still working through whether that makes sense as its own category.

We can also talk about modern desire for efficiency and what it means to try and plan for diversity. And why those two things don't have to be as diametrically opposed as you might initially think.

I also plan to touch on wrapping this concept back to one of the most common UIC systems - classification of human identity, behavior, and psyche. Human behaviors and human psyches are unique, not guaranteed predictable. And a point to make is that how we perform science, down to every last aspect of it, will have very different ramifications and abilities/weaknesses as a tool when performing analysis of IIC phenomena versus UIC phenomena. This is such an important Science 101 concept that underlies so much of what needs to be understood about performing science on human identity, behavior, and psyche.

 This UIC/IIC difference is such a core, foundational difference within various science endeavors and it boggles my mind, and frankly terrifies me, that this doesn't seem taught as a foundational concept in modern society. Yes, some courses have some material. As mentioned in the History of UIC section above, I'm not the first to discover this, and I've found material touching on this concept in their own way before. But I've never seen it laid out as clearly as I hope I have done here. 

It is not just helpful, but downright essential, to have this baseline understanding of what unique phenomena category systems are before having any kind of conversation about personality and mental health classification. It is, I would argue, downright negligent to not have better conceptualization of IIC and UIC categorization when discussing these topics. Including a given system or label's usefulness, benefits, and drawbacks. Which goes back to the starting point of this post. 

To answer the question - "is ADHD an altogether helpful category or not?" - we must first understand what it means for UIC categories to be useful or not useful tools. I have some initial thoughts, but mostly I don't have much guidance yet for you. Still a work in progress. My one first bit of advice is ... we darn well better handle this concepts with caution, especially while we still don't have clear and widely accepted answers to these "useful or not" questions. Especially as self-determined by the populations being labeled when it comes to human beings. I don't currently see that caution being used and it's causing problems - which is a topic itself that we'll continue to advocate for as needing to be explored with haste and urgency. 

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This article brought to you by the currently unfunded Peer Voices Network. 

Please consider donating to support this work. I am disabled, financially struggling, and am forced by existing social structures into producing content like this for free. I hope those with means and privilege will eventually shift priorities toward increased support for lived experience content generation and expertise sharing. Donations are never required and always appreciated. 

Donate Link: https://ko-fi.com/socialrealitylab

I am also available for consultation work, curriculum development, trainings, etc.. I enjoy partnering with organizations on development of more accurate understandings of social reality. 

Find us on YouTube at: https://www.youtube.com/@peervoicesnetwork

I can be reached by email at peervoicesnetwork@gmail.com

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Photo by Eric Prouzet on Unsplash

Holding Individuals, Parents, or Society Accountable When A Child Has No Friends?

I saw the following comment on a peer support Facebook group today...

"It is so important for you to find your neurodivergent (ND) child somewhere they truly belong"

And I'm glad it was written so I can comment on a very common issue and framing I see everywhere, find problematic, and want to highlight and adjust. My suggested replacement for this sentence was...

"it is so important for collective society to be held accountable for finding your ND child somewhere they truly belong."

When we say "go find it", it can imply that such a somewhere exists. For some, it does. For others though, an under-discussed reality is that such a place of belonging does not exist. Or, if not literally "non-existent", that it is so rare and so out of reach as to be wholly inaccessible. Which is functionally the same thing as non-existent as far as their personal lived reality is concerned. Does society recognize these hard truths? Here are the two most common reactions I see in my peer advocacy work:

1) Gaslights and Denies These Realities

Such replies as: "You're wrong! Community does exist, you just haven't found it". 

What did I just say above? No, it doesn't. It could. It should. For many circumstance, no it does not. It is either literally non-existent (no-one is accepting them) or functionally non-existent (inaccessible or extremely high barrier or low probability of accessibility). 

2) Holds Parents or ND Individuals Solely Accountable (and Makes Others/Society 0% Accountable) For Building Somewhere to Belong

Sometimes lack of accepting social group will be validated as real and not gaslit. What happens in those scenarios is a discussion of responsibility. An accepting social group will need to be built. Who is responsible for building it?

In the vast majority of such conversations I encounter, the answer is either...

A) Not society. You have to build it yourself

B) Surely someone is already building it. 

B is often (not always) untrue, and is functionally just another variant of point #1 above.

For A, there's some nuance here. It is sometimes possible to self-build. The Facebook group where this discussion was found is a testament to that. But it is also, as reality, often astoundingly hard to downright impossible to "build it yourself". You might not be able to try. If you do try, finding acceptance might have potential to occur but the chances might be super low. For example, thousands of people make Facebook content no-one engages with. Who or what do we fault for that state of affairs?

Who we're not faulting in these scenarios is - other people. Where's the burden placed on other people to do their own work to be more accepting? Where are community programs to foster genuine acceptance that aligns with the person-in-need's self-defined comfort? Where is accountability on others instead of solely on the individual? 

This "only ever blame the individual and never the world they inhabit" is very common in modern hyper-individual, neoliberal Western cultures. While personal strength and personal responsibility matter, taken to this extreme it's an impossible and fictional standard to hold others to. 

Concluding Thoughts

We don't all need to be best friends, but most of do need places to belong. A society that allows high levels of intolerance and rejection, along with taking 0% communal accountability if folks have nowhere to belong to, is deeply unjust and deeply immoral behavior. Period.

And the fictions of "they do have somewhere to go" or "they can build it themselves" serve as false narrative to justify that lack of communal accountability. 

Put it all together, and you create a world where people are suffering through no fault of their own, told it is their own fault, and no steps are being taken to address the underlying societal-level failures. Holding individuals or parents to an ironclad standard of "it's definitely achievable so quit whining and go achieve it" is destructive and abusive advice. This is social illness, not mental illness. This is social failure, not individual failure. Stop treating individuals. Start diagnosing and treating society. 

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This article brought to you by the Peer Voices Network. 

Please consider donating to support this work. I am disabled, financially struggling, and am forced by existing social structures into producing content like this for free. I hope those with means and privilege will eventually shift priorities toward increased support for lived experience content generation and expertise sharing. Donations are never required and always appreciated. 

Donate Link: https://ko-fi.com/socialrealitylab

I am also available for consultation work, curriculum development, trainings, etc.. I enjoy partnering with organizations on development of more accurate understandings of social reality. 

Find us on YouTube at: https://www.youtube.com/@peervoicesnetwork

I can be reached by email at peervoicesnetwork@gmail.com

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"A Teacher Never Fails, Only You Do"

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This article brought to you by the Peer Voices Network. 

Please consider donating to support this work. I am disabled, financially struggling, and am forced by existing social structures into producing content like this for free. I hope those with means and privilege will eventually shift priorities toward increased support for lived experience content generation and expertise sharing. Donations are never required and always appreciated. 

Donate Link: https://ko-fi.com/socialrealitylab

I am also available for consultation work, curriculum development, trainings, etc.. I enjoy partnering with organizations on development of more accurate understandings of social reality. 

Find us on YouTube at: https://www.youtube.com/@peervoicesnetwork

I can be reached by email at peervoicesnetwork@gmail.com

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Today's post is a story about a response email motivated and inspired by an excellent four minute student advocacy video (linked just below), and how that student performance helped me understand and make sense of a recent experience I had. A hurtful experience where I, yet again, was silenced by and banned from a supposedly trauma-informed mental health support community.

This is only secondarily about that one incident though. This is about a proud vocalization speaking out against, and explanation of, ongoing attempts to hold individuals themselves responsible for their natural and understandable emotional distress in response to societal failures. A reality these sorts of communities continually fail to address. 

For some brief context, this group that silenced me, PACEs Connections, has a focus on education and childhood trauma. I am a childhood trauma survivor. On one of their public comment forums I let out a single "f-bomb" comment as part of anger directed at one of their hosted article authors yet again not representing the story and perspectives of my trauma communities correctly. This misrepresentation is a common occurrence on their website and in the theory, materials, and methods they promote. In response to my language choice, I was instantly banned. No probation period. 

There was some follow up review. During that time PACEs Connections staff chose to spend their time policing my language choice while simultaneously failing to listen to, respect, and seek to understand why I was angry.  They refused to engage in meaningful and respectful accountability for addressing the problematic content - problematic as determined by a multitude of peer feedback perspectives. They chose to not take accountability for resolving what caused the anger in the first place - egregious misrepresentation of my survivor community's experiences and viewpoints.  

This is far from an isolated incident. Similar hostile interactions with mental health "support" communities and professionals have happened to me, on average, 3-5 times a week every single week for almost four full years. I am hoping these communities will eventually come to understand why this treatment of peer voice is deeply problematic. And figure out how to take direct action to support changing the status quo silencing, ignoring, denial of, and hostile attacks against peer perspectives, opinions, and views.

The  below letter (slightly edited here for clarity) was sent to PACEs Connections staff on May 14th, 2023.

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"A Teacher Never Fails, Only You Do"

The above quote was found within the following four minute advocacy performance by student voice. I recommend watching that video in full, then reading this note. 

Video Link: 2014 - Brave New Voices (Finals) - "Somewhere in America" by Los Angeles Team

Watching that helped me start to more fully understand. To help along the construction of a concept I innately have known was occuring. But could never find and struggled to build a descriptive concept for it or put words to it. Which also prevented me from truly or fully understanding what has been happening to me. That concept being: It can be abuse to be failed.

Students are constantly gaslit into being, themselves, called failures when they are the ones being failed by systems and societies. 

With the additional social justice note that children, peers, and service users of social services are (almost) never allowed to define what will be counted as success or failure. We remain unable to and disallowed from holding systems and others accountable for our own self-defined "failure" and "success" needs. That is the country and system we live in. 

This can be extended to include my own ongoing situation where, for example, it seems believed that PACEs Connections didn't fail me. Instead, I was declared to be a failing participant within their community and banned for what they viewed as my own failure. It is decreed that systems and services don't fail. Only I do. That is the narrative I'm subjected to every day. That is the narrative I have to fight to not internalize and often don't succeed at preventing. It is an impossible ask to not prevent it when the narrative onslaught comes from every angle, every single day. 

I reject the notion that we, the victims, have to build "resilience". I reject the viewpoint of "it's me myself who isn't doing enough to not let these experiences affect, hurt, and damage me". That is an abusive and unjust framing of the situation. Stop calling myself and my peers the failure point. Start understanding that we are being failed and point your compassion, outrage, and focus at those failures. We do not need to be "fixed". Why?

Because my peers and I are not broken. We are not failures, though we are constantly treated as such. We are, it remains true, suffering. But it is because we are constantly being failed. When we speak up in protest of that gaslighting self-fault narrative, we are ignored. We are attacked. We are dismissed. We are further failed, and often further traumatized, by those experiences.

It's time to end that cycle. It's time to get the story right. 

My peers and I are not failures, though we are constantly treated as such. We are not allowed to define or effectively pursue health, success, or help on our own terms. My peers and I are being failed and abused by the systems we inhabit every day of our lives.

Even when you discuss social determinants, you're not always getting the story right. Please stop doing that. Please start being held accountable to truly listen. Please have the humility to understand your story of these situations might be wrong. Please work to properly empower the people themselves to write the story correctly.

Sincerely,

- M

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Photo by Antor Paul on Unsplash

Latest Draft Attempt at Explaining "What is Gender?"

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This article brought to you by the Peer Voices Network. 

Please consider donating to support this work. I am disabled, financially struggling, and am forced by existing social structures into producing content like this for free. I hope those with means and privilege will eventually shift priorities toward increased support for lived experience content generation and expertise sharing. Donations are never required and always appreciated. 

Donate Link: https://ko-fi.com/socialrealitylab

I am also available for consultation work, curriculum development, trainings, etc.. I enjoy partnering with organizations on development of more accurate understandings of social reality. 

Find us on YouTube at: https://www.youtube.com/@peervoicesnetwork

I can be reached by email at peervoicesnetwork@gmail.com

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Lately I've been attempting to explore gender as a concept from the angle of...

What even is the point? Why is it useful? 

I fully acknowledge and support that many people find great meaning with it, and I want to understand why. I've also been using these questions to link up with a fancy-sounding concept called epistemic injustice - injustice related to knowledge.

To start with, I want to put to the side for now the societial roles and social control aspects of potential answers to those above question. They very much matter. I also don't want to lose sight of body dysmorphia, but we'll also be getting to that later. It too very much matters as an experience to acknowledge, validate, and discuss. To start with though, I want to begin with another use of gender as a concept which my current attempt to label is that it's a "desire to be seen and known". Known to own self. And able to discuss and explain to others. To explore this, want to bring in epistemic injustice as a concept. 

If you have an experience but can't define or explain it, that can be incredibly disempowering. Two examples that I've seen used as newer-invented ways to explain longstanding occurrences are...

- Sexual harassment

- Postpartum depression

Both always existed. But they were often explained in different (often more problematic) ways. Sexual harassment, especially male on females, was just "boys being boys". Postpartum depression was just another time women were getting "overly emotional". Both were oppressive and disempowering framings of experiences humans were having.

Side note - I didn't mean for both these examples to involve gender, it's just two of the classic examples and I didn't have non-gender ones"

If that makes sense as a concept, we can now bring that epistemic injustice piece (and it's corollary epistemic justice) back to the "what's the point on gender?" question. There can be a lot of empowerment having a term / concept to define oneself by. Why do I do [behavior/trait/thing]? Oh it's because I'm a [identity]. There's tons of ways to fill that [identity] in. There are a bunch of pros and cons, justice and injustice, in which kinds of options society makes available and popularized. And also which ones society doesn't make available. 

You can be a punk, a gamer, an introvert/extrovert. You can understand yourself through your job role. Etc. There's all sorts of answers. But one that seems deeply interwoven into various human cultures, including the dominant white supremacy patriarchy culture that's held control of supposed "formal knowledge" the West has looked to for 2,000+ years, is the binary gender system.

One question is - what exactly are these collection of [behaviors/traits/things] that supposedly have...

1) A bimodal distribution

and

2) Historically have been said to directly correlate to which biological sex organs you have

Is this a main part of what gender is being used for people who identify strongly with the concept? Sort of predestined "this is the psyche/personality" I have and this captures explaining that. And, taken a step further, there's a notion that it's the one you're supposed to have. That biology of sex organs somehow predicts or determines likelihood of these attributes. Which seems like a quite a bold claim to make a scientific hypothesis about with any sort of "certainty". Especially given that we have exactly zero established mechanistic understanding of how biological neurons give rise to higher-level cognitive experiences like emotions and complex thoughts. 

Reference Article: Hard Feelings,  Science's Struggle to Define Emotions

Imagine if we did this with any other biological characteristic...

Green-eyed people are more nurturing.

Blonde people are more aggressive. 

People with dyslexia have higher emotional sensitivity. 

It sounds ridiculous. The one difference is that, unlike eye color, we do know that biological sex organs are directly linked mechanistically with, on average, higher or lower levels of just three of the fifty hormones in the human body. Hormones act as "signals" interacting with human organs, including the brain. Again though, we do not directly know how the brain creates higher-level cognitive functioning. It's also important to note that all humans have all three sex hormones - estrogen, progesterone, and testosterone, just in different levels. 

So that's psyche and biology.

Moving on from what I'd term the more "inner" or "innate" [behaviors/traits/things] aspects of gender, we can also touch for a moment on socially defined roles. At this point connection to biology becomes absolutely ludicrous. Does strongly identifying with one's gender mean contentment with the social role society chose for you based on your sex organs? Do those seem to have much of anything at all to do with sex organs? Seems incredibly unlikely.

There's the classic fashion examples of how Viking men wore their hair long, 17th-century male aristocrats loved heeled shoes as a fashion statement, and pink-blue gendered fashion social rules are a product of the 20th century. There is seemingly nothing innately about society's collective gonads that predetermines them for predictable psyche patterns in fashion preference.

Yet for some reason society likes to make and enforce social rules, and assigned gender based on sexual organs is one of the most popular ways to divide up humans and also assign social rules to them.  psyche 

Framed this way, it seems deeply dystopian to base on social role on unrelated biological characteristics. Maybe there's pros as well as cons? One could argue "social cohesion". It seems flimsy compared to the thousands of years of historic and ongoing gender oppression we continue to witness. And remember that gender (in all the aspects it plays out) remains forcibly assigned to you by modern society through possession of certain biological sex organs. 

Understood in this light, is one part of the gender revolution thus an understanding of self-selected social role? Perhaps? If so, we've assembled quite an odd mishmash and goes back to a question we could ask - is this a useful broader category to have around? Maybe yes, maybe not. It's not my place to decree that answer. I do think we can do much better asking and exploring the question. As well as the broader question this article is aimed at - "what even is gender?".

We can also talk about historic legacy and enmeshment into modern culture as such a deeply interwoven level. It's so deeply engrained into certain historic cultures it tied to language itself. It's used as one of the core fundamental concepts (invented? discovered? arguable as to which) that's been "given", but mostly that means demanded, be used as a main tool for explaining why person A is behaviorally and mentally different than person B. It also makes some kind of rational sense that if you believe in the sexual organ determines psyche and physical capability hypothesis, it may be useful for assigning social role. But wow is that a leap to be careful about. Because if you're wrong, if there's no causal biological link, it is the exact same thing as than assigning personality and roles based on eye color. So maybe we should be a bit careful about it?

Finally, we also need to talk about body types and body dysmorphia. To begin with and to summarize above, I have strong doubts about our ability to link psyche to sex organs, especially given lack of mechanistic understanding and the massive nature/nurture questions brought on by enforced socialized gender norms. Biological physical characteristics are a different matter. They are more directly measurable than inner psyche (always self-described) or behavior (open to extreme subjective bias, including both the what and especially the the why). We get down to hard number like height, facial shape, etc. Even then there's interesting research about how socialized gender role impacts physical development to some degree. But on the whole we're more firmly in hard, clear data. And yes, humans have many bimodal physical traits that overlap with sex organ. There's also, and this can't be emphasized enough, huge bell-curve overlap. The tallest person with a vagina is 7 feet, 0.7 inches tall. At the individual level, the predictive certainly power of predicting almost any secondary physical sex characteristic is immensely low. So, there's that to note.

The other thing to note is body dysmorphia, a condition where feels extreme discomfort about the body they're born into. This could mean the sex organs. This could mean the secondary physical sex traits. It could mean any of the biological traits. It's a complex topic that's been treated with disdain by the psychological and broader medical community for centuries, placing it in good company with all manner of other medical racism, sexism, homophobia, ableism, ageism, and all other assorted bigotry. 

Body dysmorphia exists. Modern science can do some amazing things to change one's body. That sounds like a win to me.

...

Getting back to the original introductory questions, what is the point of gender? What does comfort with a gender concept mean?

Is it a way to feel and be accurately seen and to describe to others. A way to describe your "inner" or "innate" being. The [behaviors/traits/things] that make you, you?

Is it ability and happiness/contentment/comfort when allowed to perform and do the roles/activities/behaviors socially assigned to that gender?

Is it being born into the body type associated with that gender?

...

Are these three definitions of gender even accurate? Is something missing? Is something sounding wrong? 

It seems super weird to me how this one singular human categorization system seems to simultaneously be all these things at once. To be wholly honest, I don't even know how I feel about it. My main feeling currently is that I'm still not even sure the above is correct.

I feel like gender, despite its astoundingly deep cultural and social impact, remains elusively defined and my main feeling is being frustrated by that fact itself. It seems like we don't even collectively know what gender actually is, or at least I feel like I don't and that makes me feel frustrated, disempowered, and deeply isolated. 

I don't want to ruin anyone else's enjoyment of the concept. I do want to ask and better understand what they themselves think about the what and why. What are they enjoying and why? What is "gender" to them?

One of my thoughts is this...

1) Maybe it feels fun and empowering to have that group you feel belonging to and explained by

2) Why is gender one of the most commonly used category systems to develop belonging to? Is there a way to preserve the pros of #1 with some other system? Is #1 a pro for everyone? Who isn't it a pro for and how can we accommodate them? Etc.

So, that's my latest exploration of gender as a concept. Interested to hear if it resonates with others, horrifies them, or lands somewhere in between.

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Photo by Delia Giandeini on Unsplash

Letter to Boston University Asking for Co-Empowered Peer Inclusion in Public Health Research and Support Efforts

Email first sent on Tuesday, May 2nd to the leadership team at the newly announced Center for Trauma and Mental Health at Boston University's School of Public Health. Despite numerous attempts to reach out, still no reply from any member of BU faculty or leadership.

You can help by emailing Dean Sandro Galea and Associate Dean Yvette Cozier (and other BU faculty and staff). Don't let patient feedback be silenced, ignored, and tokenized!

Dean Galea: sgalea@bu.edu

Associate Dean Cozier: yvettec@bu.edu

(please cc peervoicesnetwork@gmail.com to help with advocacy organizing)

Letter to BUSPH Leadership

Greetings,

This is Max Taylor from the Peer Voices Network, writing once again to leadership at Boston University's School of Public Health (SPH), to ask and insist that broader measures be taken to incorporate and invest in peer perspective input as co-equals in health design and health research efforts.

Today's email is in response to the announcement of the new mental health center at Boston University: SPH Launches Center for Trauma and Mental Health. 

A stated goal of the center is that "equity and justice will serve as guiding principles for the center, which will emphasize community engagement in all aspects of its work". Given that goal, included below is a peer empowerment roadmap that my community cohort believes to be equitable and just requests. Please read the full letter below. 

Please respond and engage meaningfully. My peer community deserves to not be ignored on this matter. We are the community you have stated that you want to engage with. 

Included below is a letter introducing the Road Map to Empowered Peer Inclusion. This is how the peer community I represent would like to be engaged with.

Also included is a short section referencing a December 2022 peer inclusion report from the National Institutes of Health Working Group on Diversity. Members of that working group are among those who have been cc'ed on this email. Their work and report is directly relevant to the requests contained in this email. 

Thank you for reading, and am looking forward to a reply from BUSPH leadership. 

Sincerely,

- Max Taylor

Introducing the Road Map to Empowered Peer Inclusion 

Direct Action Request: Please respond with an action plan (with accountable deadlines) on this matter.

There is a crisis of non-inclusion of empowered peer voice in health services and research in this country. I have documented evidence of, quite literally, thousands of cases of client non-improvement (and often further deterioration) in response to years and decades of attempts of mental health care on their behalf. This evidence is not making it into research cycles. It often isn't even considered evidence. This is not science. This is prejudice against peer feedback.

Boston University has the resources to be a leader in implementing what science and DEI efforts should be, are currently often is not - using and respecting all available evidence. Letting service users themselves say what help is and is not. Letting service users have an authoritative and empowered say in what does and does not count as evidence.

Boston University has publicly and repeatedly stated interest in such endeavors since last fall. They are also currently falling short of where the peer community would like them to be. My extensive peer network cohort is working to develop a roadmap of empowered inclusion and it will call for...

Draft Road Map to Empowered Peer Inclusion

•  Funding of community, advocate, peer-led, peer-designed projects

•  Moving past tokenized inclusion and into genuine empowered co-participant research design power structures for peer perspectives

•  Bringing peers on as co-equal research partners 

•  Paying fair and equitable wages for peer labor on improving health systems and health knowledge

Please do not ignore these community requests. This request deserves a respectful and engaged response. These peer feedback critiques deserve respect, acknowledgement, and engagement. My community deserves action being taken right now. Not next funding cycle. Not next year. Right now, within basic common sense expectations, as soon as possible. 

This is not an unreasonable ask. And I would challenge everyone at Boston University reading this to consider what it means, on a basic moral level, to keep excluding peer advocate voice from health service research and design. We can do better. We must do better. Doing so will result in better health outcomes for the people you state (and I believe truly do) care about. We want care that is decided, in large part, on our own terms. That is a reasonable request. 

Please respond with an action plan on this matter.

Connection to Recent National Institutes of Health (NIH) Report

The new BUSPH Center for Trauma and Mental Health will be lead by Dr. Jaimie Gradus, a current NIH funding recipient.

I thus have added every member of the NIH Working Group on Disability to this email. Their team released the following Dec 2022 report: NIH advances landmark recommendations on disability inclusion and anti-ableism

Mental illness is a disability, and falls under the purview of that report. Many of the roadmap asks above fall directly in line with these report recommendations. Will Boston University follow these recommendations? Is that working group yet another well-meaning effort with no real accountability or meaningful resultant change? Or can it be something more?

This is a chance for BUSPH to be that change. 

Report recommendations include...

•  Ensuring that including people with disabilities and anti-ableism are core components of all NIH diversity, equity, inclusion, and accessibility efforts

•  Expanding efforts to include disability communities and the perspectives of individuals with disabilities in NIH efforts and help inform NIH’s approaches with these perspectives

•  Establishing structures of accountability around these efforts to promote progress and transparency

•  Coordinate research activities involving people with disabilities and to support disability inclusion within the scientific workforce

* * *

This letter was designed and written by the Peer Voices Network. 

Please consider donating to support this advocacy work. Donations are never required and always appreciated. Donate Link: https://ko-fi.com/socialrealitylab

Our network remains available for consultation work, curriculum development, trainings, etc.. We enjoy partnering with organizations on development of more accurate understandings of on-the-ground social realities. 

Find us on YouTube at: https://www.youtube.com/@peervoicesnetwork

We can be reached by email at peervoicesnetwork@gmail.com

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