A personal learning journey in Disability Language

Note: In this article, identity-first language (such as Deaf person, autistic person), instead of person-first language (such as persons with disability, persons with autism), and language that aligns with the social model of disability is adopted.

I have had the pleasure to be involved with the disabled community for the past 10 years. In that time, I have embarked on a journey of self-reflection and personal growth as I interact with a wonderfully diverse group of communities. A common query I receive from members of the non-disabled community is to check if certain terminology is “right or wrong”, not realizing that their question, despite good intentions, has led them into a complex and constantly evolving arena. 

The fact is I don’t always know what terms to use.  What has worked for me is to constantly be asking, reading, and reflecting. A lot.

This piece will not be a manual of right and wrong language, but a sharing of how my understanding of language as a non-disabled person has been shaped and lessons I have learned through the years of interacting with the disability community in different capacities: both personally and professionally.

Accept that there is no standard checklist.

One of the first things that we must understand is that different people have different preferences in the language used to describe themselves. I see these preferences varying by many factors such as where it is used, who it is used with and the context of the topic and more. Whether one agrees or not to use a particular term might also be dependent on the state of mind and mood at that point of time. 

The disabled community is varied and diverse.

“Why can’t the whole community make up their mind and be more consistent?” This is a common comment I encounter and I remember having the same frustration in the earlier years. Some Deaf friends who code switch between signing and speech for their communication modes have shared that they usually identify as Deaf (with the capital D to convey pride in their culture) but in some settings, they will choose to say “hard-of-hearing” because they do not want the other party, such as a potential employer, to assume that they don’t use speech as they are unlikely to understand what it means to be “Deaf”.

My reflection from these anecdotes is that this desired convenience to have a standard checklist is only to our own benefit, and proves to be unfair to the person or community to be addressed. Everyone interprets the same set of words differently. Some disabled people choose to stand firm on a fixed set of preferred terminology, making it a point to explain and educate people of the values behind the choice. But not all situations provide such an opportunity for education. Others pick their battles to fight. I have seen how asking to be addressed in the way they prefer is an everyday battle for my disabled friends. It can drain them out very much especially when they are constantly being gaslit with accusations of being narrow-minded in nitpicking semantics and neglecting the more important main context of the topic being discussed.

Power dynamics play a major role.

Ableism exists. Disabled people are operating in a world that defines them as lesser than, objects of pity rather than the result of a society that excludes them by design. This language is often internalized because it is ever present in our society. Even when a disabled person looks to adopt their own language, they might encounter what a friend of mine experienced.

An autistic friend shared that one of his lecturers disagreed with using identity-first language for the autism community and insisted that in class and in formal settings, person-first language as in “person with autism” should be used. The lecturer has quoted years of experience working with special needs to know this to be the most appropriate approach. This was even after my friend explained his values behind identity-first reference which is largely advocated for in the international autism community. When people higher up in the power hierarchy dominate and influence the narrative, the minority and the marginalised might have to assimilate out of necessity to survive, and are forced to accept something against their own beliefs.

Our language conveys our internalized feelings and perceptions.

The words we use to describe disability convey our perceptions of disability. I have found it useful to understand the values and beliefs behind people’s choices instead of looking for a standard checklist of right and wrong for each “type of disability”. The question is therefore not whether this word is right or wrong, but more fundamentally “what values and belief of mine am I conveying when I say this” or “what does it sound like to others?”. Here are 3 examples to unpack the meaning behind common things we say about disability.

When we use defective-related terminology such as hearing-“impaired”, “suffering from autism”, we are saying that there is something wrong with these individuals and they need to be fixed to become “normal” by society’s standards. However, there are many people who see their conditions as part of their identity, integral to their development as an individual rather than being something that needed to “be overcome”. Their disability is an important factor that influences both their strengths and weakness like any other person being shaped by experiences throughout their lives. To imply that something needs to be fixed is to pass judgment. Similarly, wheelchair users are often described as “wheelchair bound”, implying a sense of tragic confinement. But there are those who see their wheelchair as an extension of their body and feel enabled and liberated by it.

Very long time ago, I commented to a Deaf friend “Wow you must have worked really hard on your own to get through the 4 years in University”, knowing there was little support and accommodations in the local higher education environment. His response was “I did, but that is not what we should have to go through.” It is not uncommon that we applaud and give excessive credit and hype to a disabled person for doing everyday ordinary tasks such as going on public transport, getting a good academic qualification, securing a stable employment. This is what the community categorises as “inspiration porn”. This stems from having low expectations of the disabled person in terms of his capability and his fundamentals rights to be part of society. By calling them “brave”, “strong”, and “inspiring”, even if well-intended, we are effectively implying that the reason why every other disabled person who has not been able to do these things that come so accessible to non-disabled individuals is because they haven’t been working hard enough and they need to be braver and stronger. This diverts attention away from the responsibility of society to minimise or remove barriers so that disabled people can participate on equal grounds like anyone else.

Lastly, when we use euphemisms such as “special-needs”, “differently-abled”, “

we are conveying that we are uncomfortable with one’s disability and that we want to erase it, put it out of sight and mind and not talk about it. We must also be aware that language is always evolving. A term good for today might evolve into a derogatory term when society starts to attach negativity and stigma to it, shaping what the word represents into something quite deviated from what it originally intends to be. 

Show that you have done your homework and are willing to learn and share.

One approach I have adopted is to make sure there is a segment for me to convey my understanding and respect for the diverse preferences within the community together with why I have adopted a particular approach for that context. This could be part of the introduction when I do a verbal presentation, or a dedicated segment in a research paper or an article (such as my opening note in this article. When we as allies of the communities demonstrate an authentic effort to learn and understand, the community involved will usually be accepting and give constructive feedback, instead of reacting negatively. It is also important not to be defensive when being corrected and disagreed with. At the same time, as allies helping to spread awareness, it works best when we communicate with encouragement and positivity instead of being aggressive and self righteous to others who are still new in their learning journey or portraying ourselves as being more “woke” than others.

In Singapore, many of us grow up with the charity mindset towards disability. We believe the right thing to do is to help these less unfortunate because we are more, and we have more. We might be so motivated and assured by our own good intentions that we might fail to realise the implications of our actions, thoughts and beliefs. The best way to help keep these in check, is to go through that journey of community immersion, form authentic friendships with disabled people, not seeing them as beneficiaries of your goodwill, and develop your own approach informed by these experiences. This journey will be unique to you, and will not be without ups and downs. And these values and beliefs inside of us will come out to be the “right language” we are looking for.

A profile of Nix in black buttoned shirt smiling to the camera

For over a decade, Nix has done disability & accessibility work in advocacy, research, special education & disability arts in close allyship with Deaf, Blind & Autism communities. As Equal Dream’s director, she leads her team to pioneer & sustain disability accessibility solutions in Singapore.

This op-ed was first published on B-Side’s Social Impact column in 2020.

B-Side is an online publication unveiling behind-the-scenes stories of creatives making waves in Southeast Asia.