[This post was written by Prof Chris Hatton in May 2024, an Easy Read is available].
In various ways, the mantra of an ordinary life has been central to what governments and services say they want to achieve for people with learning disabilities for over 40 years. If an ordinary life is so important, how will we know if it’s being achieved or not?
I’m starting from the view that an ordinary life doesn’t mean everyone with learning disabilities has to be shoehorned into what someone else decides is ordinariness or respectability. Like any group of nearly a million people (in England alone), people with learning disabilities are hugely diverse, and will want to live their lives in all sorts of different ways. David Abbott’s blogpost goes through what recent research tells us about the kinds of lives people with learning disabilities want to lead, and what people need to help them lead the lives they want.
So how can we decide what’s happening in terms of ordinary lives? We can look at whether the lives of people with learning disabilities as a group are becoming more like the lives of everyone else living in England. For example, while some people with learning disabilities may decide to live in a commune or become a trapeze artist in a travelling circus, if people with learning disabilities on the whole are living a more ordinary life then most (not all) people will be living in a place they own or rent, possibly with a partner and perhaps children, and having a paid job.
As far as I know, in England there has only been one serious attempt to find out about the lives of a really big and diverse group of people with learning disabilities, and then compare some aspects of people’s lives to the lives of everyone else in England. This was the ‘Adults with Learning Difficulties in England, 2003-2004’ project (you can find on this hidden corner of the web), which through interviews collected information about the lives of almost 3,000 people with learning disabilities. About a quarter of people interviewed were found by a market research company knocking on doors as part of their general survey work, rather than finding people through services. This project was done in the early heady days of Valuing People, and was designed to be repeated on a regular basis to see whether Valuing People was having a real impact on people’s lives.
This has never been repeated. Two recent research projects have, however, used some of the same questions with smaller groups of people with learning disabilities. The Coronavirus and People with Learning Disabilities study interviewed over 600 people with learning disabilities and surveyed over 350 family members and support workers across the UK in early 2021 to find out about people’s lives during the COVID-19 pandemic, then followed people up until the autumn of 2022, when all public health protections had been withdrawn. The 200 Lives project interviewed 107 people with learning disabilities and support workers in England about people’s lives in supported living and residential care – these interviews also took place at various times throughout the COVID-19 pandemic.
Although it’s not ideal, we can use this and matching information for everyone in the UK to ask two questions:
- Have people’s lives on the whole become more ‘ordinary’ in the nearly 20 years from the Adults with Learning Difficulties in England project (ALDE) to the recent research projects done in the last couple of years (the COVID-19 and 200 Lives projects)?
- How do the lives of people with learning disabilities as a group compare to the lives of everyone else in the last couple of years?
Have the lives of people with learning disabilities become more ‘ordinary’ the last 20 years or so?
The short answer is no, although we have to bear in mind that the recent research was carried out in the COVID-19 pandemic, when some aspects of people’s lives were very different. Where possible, I’ve tried to use information from the final interviews in the COVID-19 project, when public health protections had been lifted and services were supposed to be ‘building back better’.
The table shows there are possibly some improvements in people with learning disabilities feeling more safe in their local areas, and people having more choice over where they live, but there have been no real changes in who people live with, having a paid job, voting, and experiencing discrimination or crime.
How do the lives of people with learning disabilities as a group compare to the lives of everyone else?
The table below shows that there is still a yawning chasm between the living circumstances of people with learning disabilities as a group and people generally. Compared to people generally, people with learning disabilities are much less likely to be living as a couple, much more likely to be living with family through adulthood, more likely to feel unsafe in their local area and to experience crime, much less likely to have a paid job and much less likely to vote.
Ordinary lives, equality, decency or freedom?
Although the information we have is far from ideal, it’s pretty clear that overall the lives of people with learning disabilities in England have not become more ordinary in the past 20 years, and the gap in ordinariness between people with learning disabilities and everyone else remains massive.
But is ordinariness the target to aim for? Thinking about the huge diversity of people with learning disabilities, there are many people for whom ‘ordinary’ could work against someone living a flourishing, joyous life, and being supported to do so. ‘Ordinary’ is only one yardstick. What about equality? I haven’t included information about health inequalities here but they are covered by David Abbott’s blogpost and George Julian’s timeline, and show continuing grim inequalities. Or standards of decency and human rights? This isn’t about whether people with learning disabilities overall experience decency and human rights. Every single person should be treated with decency and their human rights respected – research, inspection reports of services, serious case reviews and journalists keep showing us again and again that this is not true. And lastly, what about freedom? What do lives lived in freedom look like for a million people?
As someone who spends a lot of time looking for ways to bring to light the social injustices experienced by people with learning disabilities compared to other citizens, it’s quite easy to complain about the fact that people with learning disabilities are rarely asked the same questions about their lives as other people. Stopping to think together about what these comparisons are for is much harder but necessary work.
This work was funded by the National Institute for Health Research, School for Social Care Research. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.
Today, despite all the policy and research over decades, the estimated 1 million learning disabled adults in England are still at a big disadvantage in terms of relationships, health and employment. Life expectancy remains wildly different, with 6 out of 10 people with learning disabilities dying before the age of 65 compared to 1 out of 10 people from the general population.
