This is the start of a series of posts about how we understand disability and the way that shapes the experiences of disabled people.
You can read the quick summary below, or scroll further for a more in-depth discussion.
A quick summary…
People are scared to talk about disability, often because deep down they are scared of disability.
I find people do want to get it right – and that’s important. But, when what’s at stake is people’s wellbeing, sometimes intention isn’t enough. Therefore, supporting people to feel more resourced and empowered to talk about disability is important in combating the negative impacts on disabled people.
One of the biggest hurdles to achieving this is that, in talking about disability, people often get stuck on finding the “right language”. However, there isn’t 100% fixed, agreed or rubber-stamped good language.
In actual fact, more important than always having the right language is understanding why you might choose one word or another.
The rest of this blog series will talk through the construction of different Models of Disability. A Model is a framework from which disability is understood in society. By understanding the models and how they have historically and culturally impacted each other, you’ll be better resourced to understand why disability is talked about in the language and ways it is.
In more depth…
Many people are scared to talk about disability.
They don’t know where to begin.
This anxiety is often attached to being scared they’ll use the wrong language or “get it wrong”.
The ‘Wrong’ Language
There are three key reasons we fear using the wrong language:
- We are afraid we will hurt the feelings of the person we are talking to or about
- We are scared that it will show up how little we know of someone else’s experience, or our internal biases to their experience like pity, fear or confusion.
- We are afraid of what we don’t understand.
Deep down, I believe, this anxiety generates from society-wide fear of disability itself. That’s something I hope to unpack and address in this blog series.
I believe that to overcome our fears, we must confront them – and I want to help you do just that.
I want to help you not because I have some spare time kicking around, but because I think it will lead to a manifest improvement in the lives of disabled people around you.
A lot of the social exclusion and inequalities that disabled people face are generated from non-disabled people not understanding our experiences and being scared to talk about it with us.
To be clear, I believe that this fear often comes from a desire to get it right. However, we must sometimes understand that intention isn’t as important as outcomes.
A world constructed without consideration of disabled people’s experiences and requirements is one that will negatively impact on disabled people.
It means services aren’t designed to meet our needs, events aren’t made accessible for us, employers are scared to hire us, and strangers and even our friends are more likely to avoid engaging with us.
Given all that, it’s no wonder disabled people are more likely to experience isolation, limited opportunities in education and work and lack of access to services – all factors that lead to higher rates of poverty, mental health problems and social exclusion.
To be clear, this isn’t to say that disabled people’s lives are inherently lacking or miserable – but only seeing disabled lives in terms of the barriers we face can lead to two-dimensional views of disabled people as pitiful or tragic. Disabled people can and do live fulfilling lives in a plethora of ways, just as non-disabled people do.
This duality is important because, in my experience, non-disabled people feel awkward talking about disability and the impact it creates lest they misunderstand, make a mistake, generalise too much or don’t show the right sort of empathy.
While it’s hard to prove a link between the ability of people to talk about or to disabled people and the resultant social barriers we face – it’s clear to me that creating more conversation about and between disabled and non-disabled people can only lead to a better experience for disabled people.
And to create a conversation, we need to start with shared language.
One of the most immediate questions people have when they talk to Drake Music about understanding disability is what language is the “right” language they should be using. Language is important — and it’s also ever-changing, iterative and responsive and responding to social and political contexts.
Even today, Disabled people use differing vocabularies to refer to themselves, and which words are most empowering is constantly up for debate.
At Drake Music, we are regularly having debates about which language we use as part of our organisational position on disability rights, and there isn’t always agreement.
The way each of us comes to the conversation is often a result of the theories and experiences of disability that we’ve been exposed to in the world. Which also means that as the social and political world changes around us, so does the language and theories we ascribe to.
And so, I thought that a useful point of departure to develop understanding about shared language in the pursuit of disability justice is to take you through a whirlwind tour of some of the major schools of thought on disability that have shaped the language we use, as well as an explanation of the current disability justice landscape in the Western world.
Because, while there are certainly phrases and words that I am happy to explain to people, I observe that they are often either (a) easily forgotten or (b) used dogmatically even when attitudes and behaviours underlying their purpose aren’t reflected on.
Personally, I’d rather a person understands why they might be using language and/or have a deep understanding of the experiences of disabled people than that they get the language right all the time (however, it’s important to note that not all disabled people feel this way!).
Models of disability
Lots of people, when trying to get it right on disability, assume that there is one clear answer on how to behave and what to say about disability.
As above, the reality is that the thinking on disability changes over time, cultures, societies and politics. Even today you won’t find agreement between disabled people on a singular right way to understand disability.
To understand the thinking behind these conversations we should talk about Models of Disability.
When we talk about “models” of disability, we mean the conventional wisdom that is used to understand and respond to disabled people in the world.
By that I mean the systems of thought that have been used to determine who in society is disabled and who is not disabled.
It might be surprising to some people that who we understand as disabled today has changed throughout time. In fact, different models of disability have shaped what language and behaviours are seen as acceptable or normal in talking about or to disabled people, as well as understanding who is disabled.
In the next four blogs I’ll talk us through some of the major ones found in the Western World over the last 150 years:
Follow the series here on the blog and share any links/thoughts/ideas/questions you have in the comments below or on twitter.