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NP-C Corner: Everyone deserves to be seen

One day during my volunteer training course, I met a woman. What she said made such an impact on me, that I still remember it years later.


She spoke about her adult son’s experience as someone who was non-verbal and used a wheelchair.


She said that some people would walk into a room, see her son’s wheelchair, and then act like he was a part of the furniture – ignoring him entirely. It seemed that when people saw he had a disability they somehow dismissed him as a person to interact with.


She said that practically no one would say hello, or even look him in the eye.


This made her son feel horrible like his disability was all others could see.


How dehumanising would that feel?


…I have a confession.


When I was younger, I would feel uncomfortable around people who showed signs of having a disability. If how they spoke or looked was different or new – I didn’t know what to do.


And what do people tend to do when they don’t understand something? Avoid.


Yes, regrettably I would probably have been one of those people who would have avoided eye contact with her son.


Hearing this woman’s story shone a spotlight on this issue, and drastically changed my perspective.


Ever since, I have made sure to acknowledge people and say hello no matter what level of ability they appear to have, and am so happy to say that I’ve received a lot of smiles and happy responses!

A woman waving to a person wearing headphones
Source: Canva Pro

Since this training day, throughout my time as a support worker and in my current life, I have been a strong advocate for people living with disabilities being treated as equals.


And yet, we don’t often talk about them as people.


The People with a Disability Australia’s Language Guide describes how common terms such as ‘retarded’, ‘handicapped’, or ‘special needs’ should not be used to talk about a person with a disability.


Sadly, I’ve heard all these terms in various conversations with people.


The public often uses identity-first language to describe someone with a disability (i.e. disabled person). This limits a person to be thought of only within the context of their disability.


That’s basically saying that their disability is the most important part of them.


But there is so much more to a person than their physical or mental abilities.


People living with a condition like NPD have hobbies and interests such as music, painting, and going for nature walks – just like everyone else!


So, the ANPDF prefers to use person-first language (i.e. person living with Niemann-Pick Disease) because we believe a person should not be defined by their condition.


“Know me for my abilities, not my disability.” – Robert M. Hensel

person in wheelchair
Source: Canva Pro

I invite you to look at the guide (linked above) and see how some of the language you, me, and even the general public have accidentally used in the past when referring to someone with a disability.


Abled or disabled? Does it matter? People are people.


People are people, and no one wants to feel reduced to less than what or who they are. Everyone deserves the right to be heard, seen, and included.


Please feel free to share this post to raise awareness of this important reminder.


Stay supportive and supported,


Ellie

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