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Anne-Marie Glasby – Senior Development Officer, Changing Our Lives

‘Ordinary lives’, ‘full lives’, ‘good lives’, ‘fulfilling lives’. Just some of the terms used in recent years to describe the lives we want everyone to be living, regardless of their disability or mental health difficulties.  But what do any of them mean and who are we to judge?

At Changing Our Lives we know that no one is too disabled or too complex to live an ordinary life. We have a long history of carrying out Quality of Life reviews with people to determine to what extent their support enables them to live an ordinary life in the community and we use our Quality of Life standards as a tool to measure this against.

As a society we judge people on what they can (and can’t) do, what they can contribute. In a capitalist economy this is often measured by economic worth. Up until the 18th century, people with learning disabilities weren’t seen as anything other than as part of their community. They made an equal contribution. It was only after the industrial revolution, as tasks and processes became more complex, that people were judged on what they couldn’t do. They were not able to contribute to the economy in the same way and began to be seen as less than or ‘other’; a distinction that sadly lasts today. Government rhetoric reinforces this with a regular focus on the those on benefits and how to get them back to work, as if paid work is the only way someone can contribute to society.

For many people with the label of profound and multiple learning disability (PMLD), being economically active is not possible in the disabling society in which we live, but why should that mean their lives have less worth?

We meet lots of people with learning disabilities who don’t have paid work. The statistics remain shocking in this regard. Of those adults with a learning disability known to their local authority in England, only 5.1% are in paid employment (NHS England, 2021). There is however, often a focus in social care on people being ‘busy’ / ‘active’.  Doing = good, not doing = bad. Perhaps as a backlash to the years that people with learning disabilities spent shut away (mindful as I write that over 2000 people with learning disabilities and autistic people are still locked away from society in hospital settings, some for much longer than is necessary for their health and well-being), people’s lives are full of ‘activities’ and we still see timetables full of bowling, shopping, cinema and bowling again. I have long held the view that the bowling alleys of the UK would collapse without people with learning disabilities.

The ancient African philosophy Ubuntu beautifully captures another way of looking at things. Roughly translated as “I am, because you are” it encapsulates the view that we are all interdependent and who we are to each other is more important than how much we earn or how many times we go bowling in a week.

When we die, in some cultures and religions our life is immortalised on a headstone by who we are. Both top CEOs who earn billions and young people with the label of profound and multiple learning disabilities who die before they reach adulthood share loving epitaphs “beloved son of…. and brother of….” What is important at our death is who we were to others, not how much we earned or crammed into our lives.

If we spend all our time focusing on keeping people busy or checking that they are, are we not equally guilty of judging people and their quality of life by what they do or can do rather than who they are? For someone with the label of PMLD or someone with significant sensory processing issues do they really want to be attending a health day packed with people in the local community centre or would they rather spend time with a person they love or their favourite staff member feeling the warmth of the sun on their face and watching the light through the trees, an ‘activity’ that at first glance could look like doing nothing.

The answer to this question will be different for everyone. What is important is that people have excellent support from staff who spend time and effort learning which it is and not simply bowing to pressure (sometimes from managers) to “get people out and about”.

A few years ago we ran some training sessions for support staff in a local authority around working with and communicating with people who communicate in ways other than words. We talked about really being with a person sometimes even in silence. Staff told us that they felt judged by colleagues or sometime managers if they were “just sitting” and that there was a need to be seen to be busy. It was perhaps perceived to be more important to be putting laundry away or cooking the meal than to spend time with someone.

It is true that it depends on the quality of the interaction. During Quality of Life reviews we have witnessed a lot of people “chilling in the lounge” (timetabled in!) where this consists of people sitting in the same spot for prolonged periods usually with day time TV on with no or barely any interaction from staff and we have rightly called this out as poor practice, but equally we can go too far the other way. In our enthusiasm for people to be out and about and present in their communities are we truly listening to and tuning in to what they want and need. Sometimes less is more. This approach needs confident staff – staff who can stand up to challenge from well meaning professionals, from regulators, from Quality of Life reviewers.

But isn’t this what we want for people? Excellent support: support that enables them to spend time with those they love and who love them, support that enables them to thrive, to be the best version of themselves and to spend their time in ways that makes them come alive.

We have met people with the most impoverished lives. On the surface this could appear to be linked to the lack of outings and ‘activities’ on offer to them, but a closer look shows it is the quality of support that is lacking. Their lives could have been enhanced beyond measure by excellent quality support in the home even if the number of times they went out did not increase. What matters is excellent support with meaningful interactions, not how many times someone visits the charity shop in a week.

I love to be out and my ‘ordinary’ / ‘full’ / ‘fulfilling’ / ‘good’ life is jam-packed. But that’s how I like it (most of the time)!

There are many, many people with learning disabilities who like and need to be out and about and need their lives to be jam-packed and I’m always personally delighted when someone is too busy to see me, but let’s make sure that everyone’s version of ‘ordinary’ is valued and sometimes doing ‘nothing’ is just fine.

Published: 22/03/24

Reference: NHS England (2021), Measures from the Adult Social Care Outcomes Framework, England – 2020-21. [Link]