Wednesday, May 31, 2023

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

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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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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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