How do you prefer to refer to your disability?

  • Lisa Grech

Press/Media: Article/Feature

Description

Do you refer to yourself as a ‘person with disability’ or ‘a disabled person’? Depending on your health condition, maybe you refer to yourself as ‘person with autism’ or ‘autistic’; a ‘person with paraplegia’ or ‘a paraplegic’ or a ‘person with intellectual disability’ or an ‘Intellectually disabled person’.

Maybe you don’t have a preference and use either, at times?  

If you do use both, does your preference change depending on who is referring to your disability or health condition? For example, if they are a friend, doctor or the general public? Does it change depending on whether you are referring to yourself, or another person? If you haven’t given it any thought, it might surprise you to know that many people have. In fact, there is ongoing debate around how to most respectfully address people when referring to their health condition or disability.  

When someone refers to themselves as a ‘person with disability’, they are using person-first language, which places the word person before their disability in the sentence. If a person says they are a ‘disabled person’, they are using identity-first language, because they are placing the disability first.

Person-first language was initiated to emphasise that a disability is only one aspect of a person, who has many other attributes, both physical (e.g. green eyes, brown hair) and as a member of society (e.g. mother, uncle, employee, chess player). Person-first language aims to take the focus off disability as the central aspect of a person.

However, some people have argued that disability is not shameful and there is no reason to detract from it. Identity-first language is often used by people who prefer it to highlight pride in disability. They do not see reason to remove the focus from an important part of who they are.

Importantly, at the heart of this debate is the need to maximise acceptance and respect when addressing a person’s disability or any health condition.

As a person with MS, I was horrified when I heard someone refer to my people (that is, people with MS) as “MSers”. This reference came from someone without MS, however, I later learnt that some people with MS refer to themselves as MSers. While it still isn’t my preference, I appreciate and respect that it is theirs. 

I still find it hard to hear people with MS refer to MSers in the broader context – and in doing so, refer to me in that group – but I am much more tolerant of this than if I hear someone without MS refer to me as an MSer.

Use of person-first or identity-first language appears to have different levels of acceptance dependent on the disability or health conditions. For example, referring to “a paraplegic” appears to be more acceptable than referring to “a schizophrenic”. Some people with autism have expressed a preference to be referred to as autistic.

While research has been undertaken to identify preferences, caution is required given that it is often not representative of the broader group of people. Surveys, for example, could be inaccessible to some members of that group, or more likely to be shared and completed by members of the group who are more invested in a particular outcome.

Inclusive research is needed to understand disability language preference, but even with this, it’s unlikely that person-first or identity-first language will ever be the exclusive winner of the debate. As such, the focus is best placed on the user’s intention.

If a person addresses me as an MSer, while I might cringe at the use of the term, if the intended use was with respect, acceptance and inclusion for people with MS, it’s easier to overlook than if it’s used as shorthand, or with some sort of derogatory intent.

Period18 Apr 2023

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Keywords

  • disability
  • chronic disease
  • language
  • person-first
  • identity-first