The Learning Disability Challenge

Author: Mark Humble

A few years ago I worked with some brilliant self-advocates in Darlington, who said to me “why would we trust you to make decisions about our lives when you can’t even change the words you use to describe us”. This struck me as both insightful and powerful.

This was in the aftermath of the horror that was Winterbourne View and the development of the Transforming Care agenda. Their work was linked to some work the Council had started, about what a strength-based approach might look like. Their starting point was to think about the language people used when talking about them.

Words like: challenging, complex, severe, profound, special, vulnerable and suffers from are routinely used when talking about people with a learning disability, (they had some really interesting thoughts on this term as well, learning impairment or learning difference anyone?)  Hardly the language of strength and empowerment! The term that they felt was most de-personalising was the use of ‘LD’ to describe people.

As a system we often talk about ‘transformation’ ‘being brave’, ‘embracing innovation’even at times being ‘radical’ and yet as the people in Darlington said you can't even change the language you use!

As a group they sent out a series of open letters to professionals in the North East issuing what they called the ‘LD Challenge’ – the challenge simply please don’t use the term to describe people. Instead we have seen the ever-increasing use of acronyms to describe people CYP, SMI and the latest catch all MHLDA. I am currently taking bets on the introduction of DS as a descriptor following the recent Down Syndrome Act!

On the face of it quite a simple request to change behaviour, however one the system simply appears unable to agree to do or comply with.

When I have seen people challenged very often the response is along the lines of it's just shorthand, I don’t mean anything by it or an apology for using the term as they had forgotten they had been asked not to use it!

It seems to me that this is the real power of culture, either not really caring what other people think as I am right, or a knee jerk reaction and using language without thinking as an institutionalised response. I am not sure which is worse, either way it's unlikely to be a driver for change.

The current way of supporting people with a learning disability clearly isn’t working and many people and their families are not having the life they want, and real change is needed. However as the people of Darlington said if we can't change something small like the language we use how on earth are we going to make the big ‘transformational’ changes that are needed.

The publisher is Citizen Network Research. The Learning Disability Challenge © Mark Humble 2023.