"Words have energy and power with the ability to help, to heal, to hinder, to hurt, to harm, to humiliate, and to humble." (author Yehuda Berg).
I have been labelled many words during my life;
Retard.
Drunk (due to my less clear speech).
Difficult.
Demanding.
Odd.
There are more.
And whilst I might not remember every single one, I will always remember how each one made me feel. Words are one of the most powerful tools we have. They can inspire. They can destroy. Whether spoken or written, your words can have a huge impact and leave a lasting memory, good or bad.
So the saying goes ‘choose your words wisely.’ It couldn’t be more true in the context of disability. I have written this instalment of Hear Me Out specifically to address the subject of inclusive language and to educate by giving tips, for two key reasons:
1. I know exactly how non-inclusive language can make a person feel.
2. I understand that people don’t know what they don’t know; that some things are said with the best intentions without realizing the negative impacts; and that fear of saying the wrong thing can be a barrier to saying the right thing or even just communicating with us at all.
“She is difficult!”
Each time I was called something like ‘difficult’ or ‘demanding’, it exposed a lack of understanding of my disability and what I needed to cope every day.
Was I odd? Or was the fact I was unable to hear, and therefore unable to join in, being ignored? Was I demanding? Or was I being clear about what I needed, so that I could join in? Was I difficult? Or was the fact those needs weren’t met, repeatedly, incredibly frustrating and dismissive of me and my worth?
Labelling someone who has a disability as ‘difficult’ can often happen, particularly in a work environment. Just as often, the root cause of that perceived behaviour is that their needs are not being met. Not demanding needs. Not unreasonable needs. Just the bare essentials that the individual requires to do their job.
Sometimes, the process (or lack of) the company has in place to meet those needs, including workplace adjustments, is not properly established or sits within a non-inclusive culture.
The process is then difficult. The person is probably not. They may well be frustrated, yes. But then you, as the manager in the centre of that process, probably are too.
The reality is, it can be easier to label a person who has a disability as difficult than to understand and remove the barriers that have been put in their way.
It is a label this is wholly unfair and dismissive of the actual heart of the problem. It is a negative word that can instil negative emotions and devalues or denigrates people as a person. Because what is actually meant is that they, and their needs, don’t fit into other people’s perceptions of ‘normal.’ You are labelled as difficult based on other people’s stereotypes and perceptions, and nothing else.
Tip: Step back and evaluate if your perception of a person is fair and true. Are they facing unfair barriers, and does that explain the way they sometimes behave or express themselves? What can you do to help remove those barriers?
“He suffers from cerebral palsy.”
It’s a form of phrase we hear all the time, both in the media and in general conversation.
“He suffers from spina bifida.”
“She’s suffering from Crohn’s Disease.
Usually, it is said with the best of intentions. But it encourages a view of that person as a victim. It’s unnecessarily emotive and can create a wave of pity that is both uncomfortable and unwelcome.
Tip: it often isn’t relevant or appropriate to discuss a person’s disability in the first place. So first of all, ask yourself if this is information you even need to or should disclose. If it is necessary, be factual without the emotive language.“He has spina bifida.”
“You want to know about Sarah? She’s deaf.”
It may be factual, but there are so many other facts and words that could be used to describe me.
Initially describing people by their disability/impairment/long term health condition can be disrespectful, particularly if it is information that isn’t at all relevant or necessary.
In the context of work, it should only be relevant when discussing that person’s individual needs to enable them to do their job as well as they can.
Tip: For example: “You want to know about Sarah? She’s smart, with years of experience. She’s determined, and reliable, and she gets things done on time and to a high standard. When you meet with her, sit face to face and in good light, because she lip-reads. And make sure it’s somewhere not too noisy.”
“What about ‘The Blind’?”
The blind. The deaf. The disabled. These are not groups of people with identical thought, requirements and ability.
Every person who has a disability, just like every person who doesn’t, is an individual, with their own thoughts, needs, skills and capabilities. Grouping disabled people together under a title, with the inference that they are just one body, undervalues us as the unique human beings that we are.
Tip: Look at us as individuals with our own needs and life experiences.
Don’t group all disabled people, or all people with the same type of disability, under one banner/need/thought/assumption. We are all different and unique in our needs and the way we live our lives with our disability. Similarly avoid thinking that all disabled people need help – this can be condescending and does not take into account that everyone is different.
“You don’t look disabled.”
Statements like this are ableist. It’s usually said in 1 of 3 ways:
In surprise because of a preconceived idea of what a disabled person should look like.
As an accusation that someone is lying about having a disability, in order to gain some sort of benefit.
As a compliment, because of a belief that having a disability is in some way shameful or ugly or needs to be hidden.
However it is said, it is not ok. I have been told that I do not look deaf. What is a deaf person supposed to look like?!
Tip: Never say this. Accept our differences and remove your misperceptions of what disabled people should look like.
“You don’t have a real disability”
Many people have invisible or hidden disabilities with no obvious physical differences. E.g. autism. By saying you don’t have a real disability, you are minimizing that person’s disability and experiences.
Tip: Don’t measure a person’s disability based on your own stereotypes of what a disability looks like.
“You are so inspiring.”
Urgh. However well meaning, it is condescending and patronizing.
In all honesty, to me, this trend or tendency to tell disabled people how inspiring or brave they are i.e what I call ‘inspiration porn’, feels like a cop out for society. If we keep praising people for working so hard to overcome the barriers in their way, for dealing with the physical and mental strain of trying to get on a level playing field with non-disabled people, then it removes the obligation on you to remove those barriers in the first place.
I don’t want to be told I’m inspiring or brave, that doesn’t make me feel good, it doesn’t help me in any way. What would be helpful would be working together to remove the barriers and misperceptions that make our lives hard.
There has been much talk in the media recently about the use of the word ‘superpower’ in relation to disability. A Love Island contestant this year was deaf and had a cochlear implant. She described her disability as her superpower. This provoked some debate and unease on social media. Some people, including myself, found that uncomfortable.
What is that telling the world? That it’s okay to have a disability as it is a superpower? That it’s no big deal and society doesn’t need rectifying? This language masks the very real issues that society as a whole needs to work to remove, i.e barriers and misperceptions we face every day.
The superpower we do possess is the resilience and strength in overcoming unfair and unjust hurdles and barriers every day. It’s how we respond and react that gives us our superpowers, not the disability.
Tip: Instead of calling us inspiring for working so hard to overcome the hurdles that society has put in our way, acknowledge that we shouldn’t have to. Identify the barriers that are in your circle of control or influence to remove, and do the work to remove them.
Saying nothing
It is not uncommon for people to say nothing, and almost act as if the disabled person or people in the room aren’t there at all. People can feel uncomfortable to talk to us, for fear of embarrassment and saying the wrong thing.
That’s happened to me so many times in my career when I worked in a predominantly white, abled, corporate environment. I could see it across their faces and in the body language when they were near me. Trust me, it can be just as harmful as saying the wrong thing. It made me feel ashamed and devalued as a person.
Tip: If you are not sure what to say, it really is ok to ask! Disabled people will often have different perspectives and views on what language they find appropriate.
In general, talk to us as you would to anyone else – focus on our ability rather than disability and remove your ableist discomfort in talking to us. If our disability affects communication, ask us how best to communicate with us – we won’t be offended.
There are many variations within deafness. I personally mainly lipread, with a little bit of sign language, a minor amount of hearing, and intelligent guesswork! So the best way to communicate with me would be to face me in reasonable light so that I can lipread you easily.
There is a common thread throughout these tips and examples. Words matter and therefore:
Be respectful in the language you use about disability.
Avoid ableist language – language that devalues a person with a disability.
Be aware of the words you use and how they can make the other person feel.
To end this post I thought I would share with you a funny story about miscommunication around my main form of communication; lipreading.
I had several guinea pigs while I was a child. One day, one of my female guinea pigs was bleeding, so I took her to the vet.
The vet, too uncomfortable to explain the female menstruation cycle to a young child, merely told me to wash it.
I took my pet home and I washed it in a washing-up bowl in the kitchen. Not surprisingly the guinea pig was distraught and squealed. My mum walked in, horrified.
“Why are you washing the guinea pig in the sink?!”
“The vet told me to wash it” I replied.
“No!” said Mum, as she quickly rescued the poor, sopping-wet guinea pig from the kitchen sink.
"He told you just to WATCH it!” The guinea pig survived.
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About Sarah Petherbridge & the Speakers Collective
Sarah Petherbridge is a disability awareness trainer and public speaker on the topic of diversity and inclusion ("D&I") from a disability angle. Do contact us if you would like to speak or run a workshop for your future events at info@speakerscollective.org.
The Speakers Collective is a Social Enterprise. We work together with a shared commitment to challenge stigma, facilitate important conversations and promote learning on a variety of social issues. Please do contact us via info@speakerscollective.org or call 020 8123 8250 with any enquires.