On the last day of accessible advent (I know that feels like forever ago!) I posted a comment that seemed to spark discussion.
Door 24 –
Language is crucial. Terms like ‘wheelchair bound’ and ‘special needs’ give a negative and incorrect message.
So I decided to write about it a little more, and get the views of others.
There has always been a vocabulary around disability. Medical terms being one, obviously. There’s the language used and accepted amongst the disability community, with those owning words such as ‘crip’. Every people has its slang as such. But then there are terms, used by those outside the community, professionals and peers, that put people into boxes, give them labels.
When I was young I attended a ‘special needs’ school. It was just what happed. This was over 30 years ago, the 80’s. Schools were inaccessible, as were attitudes. I was disabled, I had medical needs, and so that’s where I went.
I was given day release to take some classes in a ‘mainstream’ school, on the same road. Academically I was ‘able’ but physically I wasn’t, this was close enough that medical help was at hand if needed. And I could go back to use the accessible toilet. Because they just weren’t a thing and not in the way that is actually accessible anyway.
Mainstream (adjective) –
‘belonging to or characteristic of a principal, dominant, or widely accepted group, movement, style, etc.’
So from the age of 4 I was surrounded by these terms that announced me as different. The one from the special needs school across the road. It probably wasn’t said quite like that, but it felt it. I was different. I went back over the other side when it was PE or sports day. The mainstream school play wasn’t the one I was in.
So the term ‘special needs’ has always caused a slight twitch within me. And no, I don’t mean the kind caused by my SMA.
After posting the advent calendar statement to Twitter there were people curious as to why I felt the terms negative, and there were people, my people, that knew exactly where I was coming from.
I’ve been given permission to anonymously quote some Tweets and private conversations.
‘Wheelchair bound sounds so negative. I find the term special needs derogatory. But I heard it all through my childhood. It makes me feel sad, like I don’t belong and can’t join in… I’m like my life is a struggle enough at times, I don’t want to be given an unhelpful label as well. It’s so hard because we’ve been conditioned with these words and labels our whole life. They evoke feelings of sadness frustration and exclusion. But being called them you’re whole life makes them hard to shake off. Terms like special needs imply weakness and an inability which upset me most as I spend all my energy trying to prove to myself that I’m just as capable. Just as ‘worthy.’’ – anonymous 1
‘I can’t stand the word carer for mostly the same reasons. We’re not babies, we do things differently yes and some of us can’t do much for ourselves. I prefer assistant it’s more mature, less like we need help for everything. I think people think I’m just controlling but I like to take charge of situations to prove to myself and those around me that I CAN do them, though I do feel at times boxed in by society and this is added to when negative terms like special needs or wheelchair bound are used.’ – anonymous 2
‘I don’t like the terms special needs or wheelchair bound either, but even disabled implies you can’t do things. My mum and dad always told me I could do whatever I wanted, but I always got told otherwise by everyone else, I think it made me very headstrong and stubborn though. It’s hard for me to admit I can’t do something or need help cos I’ve spent my life trying to prove I can do things and will do them.’ – anonymous 3
Having these conversations confirmed to me that the terms have a lasting negative impact on the people involved, and that there’s an overwhelming need to prove yourself, to prove that you are worth something.
That makes me sad and angry. It shouldn’t be.
Personally, I prefer the term disabled, and see myself as a wheelchair user. To me, wheelchair bound implies a holding back rather than the freedom a wheelchair provides. I’m not tied in, and do get out of my chair at times, some may be surprised to hear. I also feel the specific name of a persons disability should be used more, to encourage the idea that not all people with disabilities are the same either.
As for the term ‘special needs’, all our human needs are the same, eating, breathing, learning, dressing etc. It’s how we do them that’s individual. The word special sounds negative to me, like extra work. Implying yet another difference and barrier.
Many words, including these, associated with disability, imply a segregation or weakness. It’s like sometimes there are extra words for things when there isn’t the need. Too many words around disability create barriers where there doesn’t need to be any.
It’s probably inevitable that a language is created around difference, to give it a place, an understanding of some kind. It’s just unfortunate that much of the current terms used imply a vulnerability or lesser productive and enjoyable life.
This dangerous use of language also applies to the word ‘inspiration’, mostly just used for the grand achievement of me getting up in the morning or leaving my front door (Covid times excluded).
The statement ‘overcame their disability’, implies that it is a choice not to ‘let’ your disability stop you from achieving, that disabled people who can’t do something are not trying hard enough.
But we will leave those for another time.
Are there any terms you feels are negative towards disability? Have you experienced this yourself?
Join the conversation in the comments or on social media.
Wheelescapades 
Great message for those who have all eyes and all ears, I appreciated your post and agreed with your words Gemma!
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“ To me, wheelchair bound implies a holding back rather than the freedom a wheelchair provides.” This is a point of view I wish more people understood! What a turn of perspective.
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Well I wouldn’t get up to many escapades without my wheels! Ha.
Good to see you, I hope all’s well?
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I’m so glad I read this. As a retired teacher, I know many of these terms are ingrained in the educational system (even here in the states). especially “special needs”. A good enlightening article, Gemma.
Take care, Terri
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Yes, ‘special needs’ is still used widely here too. Mostly by those talking about the people involved, rather than the actual people involved. Maybe we need to come up with some less dated terminology. Thanks for your input.
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Words are so important, aren’t they? They can have a long-lasting effect. But the words also affect how other people see you. Another one I think of sometimes is the word ‘suffer’ as in, ‘I suffer from chronic pain’ as opposed to ‘I live with chronic pain.’ Ultimately, they both mean the same, but the word suffer just sounds like you’re not coping with it, rather than trying to live despite having chronic pain. In saying that, I do use the word sometimes myself. Perhaps I need stop and think the next time I’m about to use it.
Thanks for the thought-provoking post.
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Oh yes absolutely. I live with SMA. And although that isn’t always easy, it’s not the whole of me. I do not suffer from it.
This language is all just automatic to us unfortunately, and I slip up and use terms that are ingrained in me without sometimes realising what I’m saying and what the individual words actually mean. They can have such an impact.
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This post was so interesting to me, as an “able-bodied” person. I have always disliked umbrella terminology for people with many different requirements in life, and to read your words really struck home just how insensitive (albeit well meaning, I guess?) these terms could be.
I also appreciate that you are non-judgemental towards people who use these terms, and educating people is always so much more helpful and resonating than anger.
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I try not to rant too much! And yes I do believe much of the language used is well meaning. But when something is used so frequently that puts people in a ‘different’ or negative box it’s difficult to shake. Thanks for stopping by.
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Language really is incredibly powerful, with a lot of knock-on effects that are often underestimated. You’ve provided some really good examples, and I’m glad you’ve looked into this a bit more.
Some of the thoughts of others here are pretty heartbreaking. “My mum and dad always told me I could do whatever I wanted, but I always got told otherwise by everyone else, I think it made me very headstrong and stubborn though” < I love that this person, whomever they are, had such encouraging parents. I'm also glad the responses they got elsewhere didn't make them feel defeated before they even began but had the opposite effect, making them more stubborn and headstrong. I worry that it's not always the case, that made to feel you're a lot of hassle or that you can't do things or that you're not 'normal' (whatever that means!) can make many people feel isolated and not good enough. It absolutely shouldn't happen.
Before I developed health issues myself, and being a kid of the late 80s as well, going through the 90s in school around all the pretty hideous slang, I wouldn't have thought too much about it. It's only as I got a bit older and a bit wiser that you start to question what's taken for granted as being okay. Our school and high school were not accessible, at all. We also had the 'special needs' classes but those were more for mental or learning issues, not physical conditions. They were woefully behind on providing the support pupils who weren't 'normal' needed. Awareness around language wasn't a thing back then either. I'm glad it's up for discussion now and that the real, potentially very detrimental effects, are being taken seriously.
I don't know what it's like to be in a wheelchair or have conditions that I don't experience, so I'm grateful to have the insight of others and to learn, to get a feel for the things I'm otherwise quite ignorant to.
I get the thing with the term 'inspiring' too. I see both sides, I suppose. I do feel that some people are inspiring, for one reason or another. I don't see myself as being inspiring in the slightest, and I wouldn't want anyone to consider me just getting by as being an inspiration. I suppose I find those who are able to better deal with things (guilt, stress, etc) than I am quite inspiring. But, I do think there's a big issue here that ties in with how society perceives illness/disability. It's not something that can be 'overcome'. It's not about strength either, because in suggesting it is means that those who don't cope as well or don't achieve the same things are merely weak, which is obviously horseshit.
Such a provocative area. It's not always easy to traverse it and I don't think offence is often intended, but it's always good to learn, to have these conversations and see how best to move forward so that the next generation gets more compassion and understanding. xx
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I agree, the people I spoke to have grown strength from how they were/are treated. However not everybody has support from friends or family that encourages them to believe otherwise.
I do think we have come a long way since you and I were in school, with support being given so that people with various disabilities can be educated with their peers. Hopefully this also helps with social interaction and friendships. So that eventually everyone is seen as equal yet individual. But that’s just my ideal world….
Until then we should consider what language is used, and if it’s even needed.
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Thank you for sharing all of this…the hurtful, negative power of words and phrases, intentional or not, can only be changed by bringing the issue to light…
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I think mostly it is unintentional that the terms used are of a negative vibe. But they’re used because disability is still seen too much as a difference.
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Well put…your posts help me speak better about the issue…
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Thanks, that’s really good to hear. I’m not just ranting for nothing!
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It’s nice to hear this, and the reasons. As a nurse, I often used wheelchair bound to describe some of my patients(otherwise some idiot would try and force walk them to the room or at discharge). Also, special needs was the term that was taught while in school.
It’s helpful to hear how these terms affect real people. Helps us learn about each other.
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I think it’s only really the people referred to by these labels that consider their meaning. And I don’t think initially these words are meant to be negative. Although I do think it’s inbuilt in many that disability equals difficult and less meaningful life. I’m rambling… but as somebody that cannot walk or stand or move much really, I refer to myself as a full time wheelchair user.
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Fully agreed. I dislike all labels and prefer descriptions. When describing myself in this context, I am an ‘able wheelchair user’. When I was a consultant, I wrote the following: https://infusionweb.wordpress.com/2016/05/17/theres-too-much-dis-in-ability/. Keep writing, good luck!
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Thank you for sharing your words, I’ve shared your piece on Twitter. There are too many labels for people of all types, it’s unnecessary.
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I completely agree with every single thing you said in the post.
I have the same experiences with these words and do not think “special” or “special needs” should be used.
they make me feel like an outsider.. you know like in a group.. how you suddenly become the odd one out and people start changing topics, talking in hushed voices or just become awkward.
disability etiquette should be taught in schools. just like any other subject. I feel students should no the importance of using correct language from a young age so that they are comfortable. sorry I started rambling now 🙂
amazing post
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Thank you for sharing your thoughts and experience. I know exactly what you mean about making you feel the outsider, pointing a finger at you as such, as someone who is different.
My blog is always here for you and others to ramble. Thanks for coming.
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Oh and absolutely people should be educated from a young age, so that people with a disability are seen as equal.
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