Why Harry is not “an epileptic”

In my role as an Associate Family Consultant for Dimensions, I have been involved recently in a number of conversations with my colleagues regarding the language and labels we use in connection with people with learning difficulties or other mental health problems. For example, describing someone as being “an epileptic”.

We get so used to some of these descriptions used in connection with people with learning or other disabilities that it is easy to overlook the potential impact of these expressions and labels.

Martin Boniface with his son Harry
Martin Boniface with his son Harry

I started to think about this and tried to place myself in the shoes of those people with mental health or learning issues and how I would feel if I was labelled in this way. As the 19th Century philosopher and theologian Søren Kierkegaard stated, “Once you label me, you negate me”. Whilst not everyone will agree, I think what he was trying to say is that there is so much more to all of us than a simple label. None of us are so one dimensional that we can be summed in a word.

Since those earlier conversations, I have been thinking about my language and as a starting point, the language I use in connection with my 26 year old son Harry, who is supported by Dimensions.

For example, when talking to other people about Harry, I have often described him as being “non verbal”! So, there we are, I have instantly stuck a label on Harry which most people will interpret as Harry is unable to communicate and join in conversations. Anyone who knows Harry, will know this is far from the case as Harry is constantly interacting and communicating with pretty much everyone he comes into contact with. He may not use speech as we know it, but he communicates using touch, gestures, noises, signs, pointing and facial expressions too name a few. So now when I meet people I tell them that Harry does not communicate using speech. This tells them that whilst he does not talk, he does communicate and I have not used one word or label to sum him up but rather describe the one aspect of how he communicates.

What about other examples where we can be prone to label people?

How often do we hear the expression that someone is “wheelchair bound” or “confined to a wheelchair”? Does this suggest the person is permanently tied into a wheelchair or spends their entire life in one? Instead, is it not more accurate and sensitive to say the person uses a wheelchair?

A further example is where we hear the expression that someone is an “epileptic”. In fact I have heard this used frequently in meetings with health care professionals when describing Harry. So there we are, we could now sum up Harry with two labels saying he is a “non-verbal, epileptic”!

OK, so I am stretching this to prove a point. But how much nicer, sensitive and more accurate it is to say that Harry has epilepsy and does not use speech to communicate? Note that I have said that Harry “has epilepsy” rather than saying that Harry “suffers from” or is “afflicted by” epilepsy.

I am sure you can think of your own examples and whilst I am certain that not everyone will agree with me on this topic, I will now be making a conscious effort not to use labels to describe people, but rather use language that is both more respectful and accurate when working with people who have a learning or other disability.

Language is powerful and these are vitally important points, thank you Martin.

Other examples spring to mind: personally, I live at home, not in a ‘service’. When I go out, I rarely describe myself as ‘accessing the community.’ But it is very easy to pen these things, or adopt them in habitual language. It is dehumanising. You’ll almost certainly find examples still lurking on the Dimensions website.

You’ll also find instances where we have used contractions such as ‘challenging behaviour’ where the preference would generally be ‘someone whose behaviour may challenge others.’ There are reasons for this; one is to keep the language light – repeating the longer phrase can make text dense and hard to read. Another is to match the language used by others in internet searches; if someone is searching for ‘challenging behaviour,’ they are not helped by texts that do not use this phrase.

Linguistic norms are changing all the time – there is a current debate about ‘autistic person’ versus ‘person with autism’ for example – but if we start from the premise that our language must not reduce a person, we won’t go far wrong. And if you find language used on the Dimensions website uncomfortable, let me know.

-Editor (online@dimensions-uk.org)