2 Models & 4 Golden Rules
Adam Lawrence, Chair of the UK HSP support group, discusses how to talk about disability:
This is an interesting post for me. I get to wear several hats at once!
At work I’m working on the staff network for people with disabilities and other long term health conditions. At the moment we’re doing a push to increase awareness about disability as part of a general movement around ED&I (Equality, Diversity and Inclusion).
Part of increasing awareness about disability is the language people should use. People don’t want to say the wrong thing and unintentionally cause offence, so many choose not to say anything at all. This post explores some of the language choices people can make.
There are two main models for talking about disability, the social model and the medical model. Each has pros and cons, and each has supporters and opponents.
The social model is a ‘people first’ model. The general principle is that people are disabled by the barriers in society. Those barriers can be physical things, like not being able to use/access places, they might be barriers caused by attitudes. Essentially, equality occurs when those barriers are removed.
You would say: people with disabilities.
By putting people first, the model focuses on the needs of the person and highlights what they can do. But, (to coin a phrase) no amount of polite talking has ever turned a staircase into an accessible ramp!
In this model people are identified as disabled by their differences – it is a ‘problem first’ model. The focus is to look at what is ‘wrong’ and find a fix for that problem, with society providing the fixes. Equality occurs when the fix allows the person do whatever they couldn’t without the fix.
You would say: disabled people.
Focusing on fixes for specific problems has potential to avoid addressing what the person actually needs, and can set low expectations by assuming that the ‘fixes’ address ALL of the person’s needs.
For me, I draw on both models. My more recent annual surveys have looked at which factors are more strongly associated with higher and lower wellbeing. Good wellbeing is centred around the person and having their needs met well, which appears to sit on the social model side. However, some of those factors are things like depression, sleep and pain, for which there are ‘fixes’ available, which comes more from the medical model side. On the other side, some of the factors could well be indicative of societal barriers – stress, loneliness, isolation and embarrassment.
I think that for the speed of progression of HSP, it is important to use both models, particularly when selecting mobility aids. It is relatively easy to get a conflict here – on the physical side the need to retain independence or freedom goes against the need to go further/faster than your body will allow, and at the same time there are conflicts with your own pride and how you feel about using these aids, in the context of how you have previously felt about others using these/similar aids.
Each person has to resolve these conflicts and make their own call about when to change mobility aids, and I often hear the phrase “I wish I’d done this a few years ago”. This essentially is a journey of acceptance:
- firstly accepting that mobility has changed (or is changing),
- then accepting that you could use a new mobility aid to ‘help’,
- then the acceptance that you’re content to use that aid,
- then acceptance that other people will have perceptions about you using that aid.
For many, the acceptance of change is a long process.
My key thrust is about understanding. I try to understand what HSP has in store (or potentially has in store) for me. By understanding that early, I (theoretically) have time to accept each change before it happens. I can make choices about how I live in order to maximise the use of my mobility before it goes. I can test and push myself so I know where my limits are. I am also able to use ‘fixes’ for some ‘problems’ to give me a greater quality of life. Knowledge is one of the factors making me less embarrassed about talking about my HSP, about the barriers I face, and about the fixes I use to get over/around those barriers.
So, that’s quite a journey I’ve been on there! The idea started with looking at language. There are some simple ‘rules’ you can follow:
- It is better to say something rather than to say nothing.
- If you have a disability, you are free to use any words you like to describe yourself!
- When talking about others, try to stick to factual, non-emotive language.
- Never make any assumptions!
Golden rule 1: People are not “confined to a wheelchair” or “wheelchair-bound” – being in a wheelchair can be the greatest freedom that person has had in many years. They are “wheelchair users.”
Golden rule 2: People do not “suffer from” conditions, they “have” conditions. Their condition may have consequences, but it is wrong to assume that there is suffering associated with that consequence.
Golden rule 3: When talking about someone’s condition, it is not good to ask “what is wrong with…?” because of the negative connotations. It is much better to ask “why is …. different?” Never assume that people will get better from their disability, some will, others will not.
Golden rule 4: Always avoid offensive language: “mad”, “freak”, “psycho”, “imbecile”, “crazy” and so on. These are all terms which are or were associated with conditions on the “disability spectrum”, and it is wrong to refer to people in this way, or to joke that people have those characteristics.
Beyond those golden rules it is better to try your best and say something rather than avoid saying anything. As long as your heart is in the right place it is better to have the conversation and learn another perspective, even if you say something which someone else isn’t so happy with. It often feels like this is a ‘difficult’ topic, and there are few role models. It is easy to be worried about what others will think about what you say, but in practice your choice of words doesn’t really matter that much.
Think of the conversation from the perspective of the person with the disability. Having a disability can be hard work, emotional, lonely, isolating, frustrating (etc.). Some people find talking about their disabilities very difficult. Good conversations can reduce depression, loneliness, isolation, stress and so on. So, listen carefully and show empathy.
People with disabilities may wish to engage with you for many different reasons. Some examples are:
- Feeling frustrated about something – just want to have a rant,
- Feeling emotional – just want a friendly ear to sympathise with,
- Seeking help/advice – they would like you to help with something,
- Checking – they want your opinion about something,
- Normality – they want just a conversation about something other than their disability!
There are, of course, many other possible reasons(!) but I spot that these general types of conversations crop up fairly frequently in HSP groups on Facebook.
The following paragraphs give a few more points of view about language which you may want to bear in mind when talking. These are here for context, and I find myself using some of these terms myself some of the time. Different people have different perspectives on how important these words/terms are to them. Consider this section as background context.
There is plenty of disability language with negative connotations, like “handicapped”, and there is plenty of language where the negative is implied – “differently abled”. See if you can use a different term.
Referring to someone as a “patient” implies a medical situation. People are only patients when they are visiting a medical professional or a hospital. At all other times they are just a person, like everyone else.
Referring to conditions as “illnesses” can be problematic because there is an inference that there is a cure available and the person will not be ill in the future. For many conditions there are no cures, and their conditions are not “illnesses” – if you want a different term from “condition” the term “diseased” might be more appropriate, but that can also have negative connotations (and positive, there is a large positive “rare disease” community) so think about the context. There are many who embrace their disabilities as a key part of their identities and do not consider that they need to be “cured”.
Similar to “illness”, some people cannot “overcome” their disabilities – but they may be able to overcome some of the barriers they encounter. Be careful with the word “overcome”.
The term “impairment” can have negative connotations because it focuses on differences, which can be problematic. The term impairment is often used in a medical context, and using this word outside a medical context can draw attention to the persons condition in a negative way. Again, be careful.
They are not “disabled toilets”, they are accessible toilets. You should try to refer to things as accessible… rather than disabled…., like parking spaces. Deciding if you are “disabled” or not is a subject for another post, but if you decide you are not disabled, it should not prevent you from using these facilities if you need them.
Remember that different people have different opinions on language. A term which one person likes will be hated by another. I think it is impossible to please everyone! Beyond those golden rules, find language which you are comfortable using. Respect that others may use different choices from you. If you end up in this situation, see if you can find a mutual term for the purposes of your conversation. Hopefully they also respect that your language choice is different from theirs!
This post is based on my observations, experiences and these websites:
(and other pages!)
The language of disability