Changing the Narrative is Key

Author: Mark Humble

I firmly believe that changing the narrative and the words we use to describe people with a learning disability and their families is one of the keys to genuine transformational change. Using the language of the community and home, rather than that of serviceland, supports the cultural change needed to see people with a learning disability living their lives as citizens of their own communities.

The use of acronyms like LD, MH, CYP and LDA to describe people and their depersonalising and disempowering effect is well documented and the absurdity of doing so is summed up brilliantly by those fabulous folk at Open Future Learning when they define the term ‘counter intuitive’ since “You support people who have a learning disability and you use acronyms and jargon.”

I am also a firm believer in the maxim: if you have met one person with a learning disability you have met one person with a learning disability, in that everybody is an individual. However, usually one of the things that often gives someone the label of a ‘learning disability’ is someone's difficulty with communication. As a consequence a key feature of any service or support for people with a learning disability should be clear communication.

However, I have begun to notice a strange phenomenon, on the one hand we have an attempt not to use acronyms and jargon to support effective communication and then, just when people are getting used to the words for health and care, just to confuse, we change them again, often switching one jargon for another or for something that really doesn’t make much sense.

This thought struck me recently at a meeting when people started talking about ‘urgent care’ rather than an ‘in-patient admission’, when was that decided? Did I miss a meeting? Who made that decision? And, when did we start talking about people being differently abled rather than disabled?

The Learning from Lives and Deaths or LeDeR programme is an attempt to reduce the stark and often fatal health inequalities faced by many people with a learning disability. In the North East of England the group of experts by experience recruited to support the work decided to call themselves The stop people dying too young group. It's absolutely clear what the intentions of that group are – as clear as day!

Following the scandal at Whorlton Hall Hospital, experts by their experience came together to form a pressure and support group and called themselves We are human too, again, no messing, it does what it says on the tin.

For those who haven’t seen it, check out Tim Keilty's brilliantly funny and insightful blog: Tales from Serviceland, Here Tim shares a fantastic cartoon of someone being told that they can't have the support they need because the ‘envelope’ isn’t big enough, and the obvious confusion that this causes i.e An envelope? What's envelopes got to do with me and my support?

At a recent meeting I attended, someone challenged the idea that they were ‘living with autism’ they maintained that they are autism, they are autistic and it's not something that sits outside who they are and yet the health and care system continues to develop new ways of describing people which are either a bit patronising like ‘living with’ or ‘differently abled’ or creating new roles or services that are not clear, Enhanced Reconnect Navigator anyone? Or Pathway Integration Manager?

It seems to me that if we keep creating and using ‘Special Language’ in relation to people with a learning disability and then constantly change the language we use, rather than simply using words and language that makes sense to people, the same words we use when we describe ourselves and our friends and families, then we will continue to contribute to a system that sees people as 'special' and who need something different to those who don’t have a learning disability.

The publisher is Citizen Network Research. Changing the Narrative is Key © Mark Humble 2025.