Re: "non-verbal", "low / high functioning", "individual"

Hi everyone!
Got a great question recently that I thought should be shared:

I thought "non-verbal" specifically meant that someone does not communicate using spoken words. I am confused about the boundary of the term as this slide seems to suggest that it is means that someone does not communicate in any manner.

I think this is a great question and a good opportunity to talk about language and labels. I’m fanatical about our vocabulary — I think that words matter and shape our societal perceptions. I want to be a good steward of vulnerable people and I want our language as an organization to reflect the most respectful and progressive support possible.

I prefer “communicates using X” to the term “non-verbal” for a variety of reasons. For one, the term non-verbal is inaccurate, as verbal behavior, as defined by BF Skinner in 1957 for fellow nerds out there, is function-based, (what it is trying to do), and not topography based (what it looks like). Here’s a complicated but interesting article if you want to dive deep (but is just auxiliary. Also, the writer advocates for the elimination of the term ‘communicates’ in favor of ‘requests/comments using’ but I think that’s a big rigid for laymen) http://www.baquarterly.com/2016/02/why-vocal-isnt-always-verbal-and-not-all-verbal-is-vocal/

Here’s the flyover:

If you need to somehow illustrate to someone that the person being supported doesn’t speak works to communicate, you can call that non-vocal.
Rather than pulling out deficits, it is more helpful to phrase things based on what they actually do: “requests by picking up the object they want” / “communicates via eye gaze and proximity” / “uses one or two-word phrases to ask for what they want”

So while I’m on this train, let’s talk about common industry descriptors of ‘low functioning’ and ‘high functioning’. These phrases make me cringe and I am hopeful you will join me in showing others a better way to describe someone’s needs without these terms because they are pervasive in our industry. These phrases are descriptive and provide a fairly fast and clear shorthand to describe what type of support needs a person has. It is easy to assume that someone labeled as ‘low functioning’ is fairly dependent on the care of others for most activities related to daily living, are more significantly impacted by their diagnosis, and generally will require more support. Conversely, ‘high functioning’ implies a large level of independence, that the impact of their diagnosis is minimal in regard to their ability to function with independence and relative success, and that they generally require less support than someone who is more impacted by differences related to their diagnosis.

Despite being easy to understand “shorthand”, the terms are horrible and, I would argue, abelist. Imagine being categorized as low-functioning for a moment. I imagine self-esteem damage and also a pervasive limitation to the expectations and opportunities that society would be willing to afford you. It is literally ranking people with disabilities. Please spend the extra few minutes describing the type of support or the pervasiveness of their differences to paint accurate pictures rather than using these short-hand terms. I don’t have a perfect answer for this yet but I like “low support needs / high support needs”, “minimally impacted by a diagnosis of X / moderately impacted by … / significantly impacted by … ” but feel free to create your own descriptions — even better if they are specific to the person, which is what this should all be about anyway.

And finally, on “Individual”. This is purely a pet peeve of mine and I just want to encourage your use of varied and dynamic descriptions of the group of people that we support. I fear that ‘individual’ has become a coded word in this field that signals “person with disability’ and I find that this language can contribute to the ‘othering’ that happens in groups of people that we aren’t a part of. There is nothing inherently disrespectful about this word and it is still used in common language to refer to people without disabilities as well, but please just be aware that it sometimes becomes code for ‘person with disability’ and we should be working hard to dismantle that. If you find that you need to refer specifically to the person with a disability and require a label and not a name, I like “focus person” / “service user” / “person I’m supporting” and I’m not against client (though I try not to use this one too much because it’s another coded word in our industry)

Thanks for listening and for considering. It’s not about perfection, just about awareness and trying hard every single day.
xx
Wendi