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Opinion: Only the person themselves can decide if they are a 'disabled person' or 'person with a disability'

You might roll your eyes at yet another millennial taking issue over the order in which we put the words – but labels matter, writes Brigid O’Dea.

Brigid O'Dea

PODCASTS AND SOCIAL media are the new street corners and university campuses for identity politics and debate. 

Aoife Dooley, the scribe behind the brilliant YourOneNikita account on Twitter, recently shared a refreshing new take on the terminology surrounding autism – she herself has a diagnosis of autism.

Says Dooley:

In the autism community, many self-advocates and their allies prefer terminology such as ‘autistic,’ ‘autistic person,’ or ‘autistic individual’ because we understand autism as an inherent part of an individual’s identity.

But often parents of autistic people prefer terminology such as ‘person with autism,’ because they do not consider autism to be part of an individual’s identity says Dooley. 

They want ‘person-first language,’ that puts the person before any identifier, such as ‘autism’ – in order to emphasise the humanity of their children.

Parents, friends and physicians may avoid labels for fear of stifling or impeding their loved one while others will ignorantly dehumanise with inappropriate terms.

So often both allies and antagonists believe they know best how to reference others.

Despite the move toward ‘person-first language’, what is missing frequently from this conversation, is the person at the centre of the exchange; how would they like to be acknowledged?

In the IT Galz Podcast (episode 63) Jenny Claffey and Lindsay Hamilton took a conscientious decision to no longer define themselves as ‘feminists’.  

They argued that although we are often reminded that the dictionary definition of a feminist is someone who believes in the social equality of the sexes – words are not always their dictionary definition.

Words have a cultural context, as do labels. The language of the streets, the lab and the university lecture hall often do not marry. Labels may be imbued with baggage.

When we are children, labels serve as a natural way of learning about our environment. As we grow older we begin to learn what labels belong to us.

Inevitably, some of the labels or identities thrust upon us we embrace and others we reject. Soon, we begin to self-advocate for the labels that suit us best.

I am disabled. Unlike Aoife Dooley, I do not see my disability as an inherent part of my external identity but my disability is fundamental to my experience.

My disability has been denied by the education system, medical professionals, the government as well as my own friends. My experience has been silenced, so for me, to claim the label ‘disabled’ serves to validate an experience that so many others have invalidated.

This means that I am asked to compete at the same level as my peers despite having a significant impairment.  

I claim the term ‘disabled’ because the word gives visibility to a part of me that is not always visible to others.

Of course, many disabled persons (or persons with a disability) express the opposite views. ‘Look past my disability,’ they say.  

Sinéad Burke, educator and advocate, told Alison Spittle in conversation in 2016 (on the latter’s podcast show) that she is disabled and a feminist and that those are two labels that she wears proudly.

Sinéad questions why it is that disability is a label that we are often reluctant to use; does it imply that disabled people, or people with a disability, are somehow lesser than their able-bodied peers?

Yet clearly not all disabled persons see disability in the same light.

Therefore, while two members of the same community may take opposing views on how they are labelled and the baggage they attach to these labels; their reasons are likely to be equally valid and edifying.

The question is not what terminology we feel best fits others, even when it comes from a place of well-meaning and kindness, but validating the experience of others by using the language they feel befits them.

Identity politics can be tiresome. Bret Easton Ellis may roll his eyes at yet another millennial taking issue over which order we put the words in.

Exasperated readers may well ask – why can we not ‘just be’?

Yet it appears to me that the individuals self-advocating, often fighting, to claim their label are the same individuals who have been denied by others, a part of their identity and their experience.

When eventually we are acknowledged – then we can ‘just be’.

Brigid O’Dea is a writer and journalist with a special interest in invisible disabilities.

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