1E. Disability Etiquette

Note: This is a pretty personal section for me, and I will do a lot of editorializing in the notes below. This is more of a journal entry than study notes.

Today, it's the dreaded section about Disability Etiquette. Fuck. It's gonna tell me to use person-first language. And I am going to say no. I am bracing myself for this section to be quite mentally taxing. Feeling not great.

I'm going to type all my thoughts so you know where I stand before I jump into this, because I have a feeling that my position won't be reflected in the text that I'm about to read, and this makes me deeply uncomfortable.

Source: Myself

Language is an intensely political thing and it's a realm of constant and ever-evolving struggle. Knowing what language to use and what 'etiquette' standards to follow is only possible if you know the history between different schools of thought and approaches within the anti-ableism struggle. It's also specific to community. I like to refer to Disabled people with the capital D as a political in-group signifier and call to action: ultimately, all communities that form our understanding of Disability must act collectively and intersectionally to achieve liberation. Disabled people only form one aspect of what Disability Justice activists might call 'crip' culture, which also encompasses communities that have historically distanced themselves from the Disabled community: Mad culture, and Deaf culture.

But there are moments when Disabled with the capital D is clearly not the right word to reach for. Especially for folks with intellectual and developmental disabilities, who are the ones who struggled to get person-first language in the first place. They are the ones more likely to prefer person-first over identity-first language. Autism is a slightly different case, where autistic people will often go for the identity-first language of 'autistic person,' and will scoff at the use of 'person with autism.' However, some other folks with the same diagnoses will prefer the label of 'Neurodivergent' over any other.

But again, none of these experiences are monolithic. There are still people out there who received the now-deprecated Aspbergers diagnosis who will be very displeased if you refer to them as autistic or Neurodivergent people. Moreover, there are subgroups within subgroups; racialization and gender also impact how a person or group of people might want to be identified.

To complicate matters even further, there are many people who have functional limitations, or severe diseases, or various things that you personally might think of as a disability, that they simply do not perceive as such. And it's also your duty to respect that kind of preference in your language. There are full cultures in which the concept of disability doesn't exist. That might come across as a bit shocking, but consider that it didn't always exist in our culture either. Respect and appreciate the diversity.

To paraphrase, all of this is that it is extremely complicated, ever-shifting, individualized, regionalized, and context-dependent. The attempt to form static terminology guidelines is, in my view, exonerating for those who don't want to do their homework and ultimately serves to make the abled population more comfortable. It reflects an approach that is fundamentally uncurious about Disabled culture and life, as well as the ongoing struggle for rights, recognition, and ultimately, for Disabled liberation.

I would also add that it's far more important to be aware of ableist vocabulary that you might use, because that is so much more likely to be the source of harm when you are interacting face-to-face with Disabled people. There are a lot of words that are ableist in origin. Get acquainted with it.

Source: Body of Knowledge

The IAAP recommends person-first language as the standard address that accessibility professionals should roll with. Here are their words, quoted directly.

It is generally more accepted to use the phrase “a person with a disability”, instead of “a disabled person”. People first language is the form used in the UN Convention on the Rights of Persons with Disabilities. The emphasis is on the person, not the disability, to avoid labelling and stigmatization.

Generally more accepted, eh? Generally more accepted by who? It's a socially acceptable term in the corporate world and the disability support world, but is it accepted by Disabled people themselves?

See, I can understand falling in line with the CRPD. But hear me out here: the CRPD is almost 20 years old and things have changed since then. There are lots of things that we accepted in 2006 that we do not accept today, and the CRPD is not wholly immune from these concerns.

Also, a note on the idea of 'avoiding stigmatization.' Many feel that person-first actually increases stigmatization around disability. I wouldn't say I'm a 'person with Chinese ancestry.' I'm Chinese. Neither would I say, 'I'm a person with a nonbinary gender.' I'm nonbinary. This argument was first made by Lydia X.Z. Brown and many others have since gone on to elaborate. Lydia X.Z. Brown and countless others certainly doesn't accept the phrase 'a person with a disability.' But I guess the IAAP wasn't referring to them as part of their "general" sample population.

The Body of Knowledge goes on to explain the identity-first approach but they don't really get into the rationale. Their explanation only really accurately describes the community of folks with intellectual and developmental disabilities, and I wouldn't be surprised if the source they took from was of an agency or think tank that largely does advocacy on behalf of people with intellectual and developmental disabilities.

In another section, the IAAP goes over some things that you should do in one-on-one interaction with Disabled people. Don't make assumptions about our capacity, respect our bodily autonomy, speak to the us directly, don't barge in and start helping us without us asking. But let's look at some of the sources that the IAAP links for more of a deep dive.

Source: United Cerebral Palsy

The link they provide is broken, but I searched on Wayback and it seems that as of 2017, the page basically hosted a version of Ten Commandments of Etiquette for Communicating with People with Disabilities (PDF) which is hosted on many other sources, and was at one time recommended by the US Department of Labour.

It is a dated resource, but here's some points I thought are worth preserving:

Source: University of Cambridge

So, the page redirects. You have to use WayBack machine to view the actual article.

The page it redirects to is actually quite great! They talk about how they move to identity-first language to refer to 'Disabled students' as a collective, and then use person-first to describe specific types of disability. For example, students with learning disabilities.

Let's look at the original article the IAAP meant to link to.

We see familiar suggestions. This article was clearly based off of the 10 Commandments. One good suggestion that this article has is to ask how a Deaf or HoH person prefers to communicate. You can do this by typing out 'how would you want to communicate' on a message app on your phone, or by writing it out on some paper.

One bad suggestion this article has is to put yourself at eye level with wheelchair users. This is not ubiquitously accepted as good advice. In fact, there are many that think you should explicitly not try to crouch or kneel, because that's something you do when you talk to children, not adults.

Some good advice for organizing events: Include accessibility info when advertising your event. Is the venue accessible? Try to make the venue accessible. Do you need to hire an interpreter, or live captioner?

The article also provides some ideas for language use. Don't say "The Disabled." Say "Disabled people." Don't use ableist slurs. Don't describe us as 'Brave' or 'Inspiring.' Don't refer to non-disabled people as 'normal.'

Source: Independence Australia, Disability Etiquette A-Z

Our third broken link of the day, but I did find it on WayBack.I like the way this one is constructed. The alphabet thing really appeals to me!

The only two nodes that I had issues with was "X- See a person's X factor and not their limitations" and "E - Communicate at eye level." You should see a person's X factor and their limitations. Sure, don't hyperfixate on it, but don't ellide it from your perception. When you're talking to people, perceive the whole them and don't try to ignore the parts of them just to make yourself feel more comfortable. And I've already discussed why the eye-level communication thing is debatable.

Other than that, here's a slightly rephrased version of the A-Z (that incorporates some of my editorialising). My version is entirely alphabetical (and with E and X missing), because their original version doesn't always keep faithful to the alphabetical format.

Source: United Spinal Association, Disability Etiquette Guide

If you're only going to read one of the sources, this is the one that I would recommend.

They introduce the identity-first/person-first language conundrum without talking down to people who use the identity-first model. Both options are introduced as 'two respectful models' that can be used interchangeably. While they recommend the person-first language model on the basis that there 'not yet being consensus' among all disability groups that the identity-first model is acceptable, they don't preach anything, and they even use the phrase 'disabled person' within the text itself.

This is the most recently updated source, and this reflects in some of the language they employ, and the advice they give.

Accommodating Physical Disabilities

They introduce the idea of ambulatory wheelchair users. It's good to see this receiving attention recently. There are lots of wheelchair users who can walk independently but still use the wheelchair to help them walk longer distances. There might be chronic fatigue and pain things at play. There are people with my condition who are ambulatory wheelchair users for this reason.

In terms of eye-level conversations, United Spinal Association clarifies that you should achieve eye-level by either sitting in a chair, or standing at a slight distance so that a wheelchair user doesn't need to crane their neck. The implication here is that you shouldn't kneel or crouch, though the United Spinal Association doesn't say this outright.

There are numerous references to the ADA here: the United Spinal Association emphasizes that it's not just nice to ensure your environment is accessible,it's actually required in many cases. Seat-level counters, accessible routes, clear ramps, and places to sit and take a breather.

Accommodating Sensory Disabilities

The United Spinal Association defines sensory disabilities as loss of vision or loss of hearing. They don't really address the unique case of DeafBlindness, and they also direct their advice to the case of people who have near total vision loss, and near total hearing loss.

I think the advice for accommodating Deaf people could be improved if they distinguished between communicating with culturally Deaf, deaf, and Hard of Hearing people. Forcing a person with very little hearing to lip-read is really not great, considering 30% of content is really only discernible by lip-reading. But talking to someone who is HOH is generally fine. Finding out someone's personal communication preference is pretty tantamount to setting you up for success. And even though it is generally cool to talk to HOH people. don't make assumptions.

Be aware that a person's preference might be context-dependent. Maybe the first time you met them, their hearing aids weren't in, or maybe this person isn't in the mood to turn on their cochlear implant because the fatigue caused by overusing assistive hearing technology can be quite real.

Also if you are communicating vocally, don't over-enunciate. the United Spinal Association suggests that one should 'speak clearly,' but this does not mean over-enunciate. That actually makes comprehension worse.

In interacting with Blind people, the United Spinal Association suggests that you should identify yourself and the group you are with, and inform the Blind person if you are taking your leave. You can offer assistance in a variety of ways (especially in service contexts) such as offering a tour of the facility, offering to read written information, offering to describe where food is located on a plate if in a restaurant. This all applies if the person is already in contact with you. Don't just go up to Blind people randomly if they are going about their own business assuming that they need or want your help.

Accommodating Neurodiversity

The advice here is alright. Neurodivergence is incredibly broad as a category and access needs can vary wildly. In the section titled 'Be responsible,' they refer to 'mental health crisises' but don't touch on meltdowns/shutdowns, which I feel is pretty vital to know about. Similar to the section on Deaf/Hard of Hearing people, I think the scope the set is too big for them to give actually functionable advice.

Other advice that the United Spinal Association offers include to 'be respectful of their boundaries': only touch after asking for consent, be careful about playing music or using super bright lights. They suggest that you should be supportive and understanding in the event that the neurodivergent person needs to tic or stim. Also, if organizing event, consider setting outside a quiet space for those that need a break. It's more appreciated than one would expect.

Communicate clearly and check in periodically if you need to offer further clarification. If the person needs more time to process, offer them that extra time.

Accommodating Intellectual Disability

United Spinal Association gets straight to the point: don't use the r-word.

A lot of the advice for accommodating Neurodiversity also applies here. A big one here is not to automatically defer to any companion that the person might be with, and don't treat them like children.

This isn't in the booklet, but I did work for a period with an advocacy organization that helped to improve the quality of services that people with IDD access. Some people assume that folks with IDD don't have the capacity to make choices, so they make choices for them. This is a chicken and egg situation. As a result of the assumption, there are folks with IDD who are never taught to make decisions. This is a skill that everyone has to learn at some point, but folks with IDD have been historically disempowered to make choices from themselves. To bridge the gap, some folks with IDD benefit immensely from a scaffolded approach to decision making. Present options, make those options understandable, and offer the opportunity to make a choice. This is all beyond the scope of the booklet, but an important concept to know about regardless.

Accommodating Other Conditions

The United Spinal Associations also discusses scent-based disabilities. If you can, implement a fragrance-free policy.

Source: United Nations, Disability Inclusive Language Guidelines

I don't like the way that the United Nations goes about this. No doubt, there are slurs that should be eliminated from speech. But simply prescribing what language is and isn't appropriate, when the conversation is ongoing within the community, leaves a truly bad taste in my mouth.

You can read Annex I to see the kind of recommendations they make. They recommend against even saying 'people with disabilities' and opt instead for 'persons with disabilities,' which genuinely did make me gasp.

In terms of language and terminology, the United Nations Convention on the Rights of Persons with Disabilities sets the standard that we must all follow.

No, UN, I completely and entirely disagree.

We can look into the page and see hints of why my position and why the UN feel so oppositely about this. For the UN, establishing "unified terminology" is a key goal. Terminology is not so much a weapon of liberation as it is an obstacle that we have to quickly make a consensus decision on and move on.

It does feel especially condescending, however. I do not feel like the UN is talking to me when I read their language guidelines. I feel like they are assuming that their reader is not Disabled.

Ableism is a misguided and biased understanding of disability that leads to the assumption that the lives of persons with disabilities are not worth living

Ableism, to the UN, is a miscommunication, and not a robust system propped up by history and policy decisions that has stewed for centuries now in the sauce of eugenics, anti-Blackness, misogyny and colonialism. Ableism is a killer. It makes sense that if ableism was just a miscommunication, then pushing for 'unified language' would be one way to solve the problem. But the problem is not language. The problem is the way that our society is structured, and language is but one tool at our disposal that we have to change the landscape of things as we know it.

Anyways, the five principles the UN suggests can be remembered with the mnemonic PUCKS