Friday, 17 January 2014

Inequalities and Equalities for families of people with intellectual disability

I was delighted to be asked in December 2013 to provide some brief closing comments to Mencap's  carol service [see for info about Mencap]. 

The Chief Executive, Jan Tregelles, just asked me to "say something about learning disability". Below is the text of my remarks that Jan also used I think at a repeat service the following evening:

Whatever your beliefs, at this time of the year we are encouraged to think about families and what they mean to us. 

We are used to hearing that families are important. Politicians tell us that their policies will support families best. When we tell other people about our lives, we naturally talk about our family – whether we are a son or daughter, a parent, a brother or sister, a grandparent, an aunt or uncle. When we have a particularly close friend, the highest praise that we can give is that they are “like a member of the family”. 

Even when we have had terrible experiences within our family, the idea of the family is so powerful that people yearn to establish their own family and vow to make their family a better place for their children. 

Families are at the core of the new strategy for Mencap. You might think that this is obvious and that surely families were always at the core of Mencap’s strategy. Perhaps it is best to say that Mencap is committing itself to families again. 

From the perspective of a University Professor, I’d like to offer some suggestions about what the priorities might be for Mencap as we decide how best to support families. I only have a few minutes today, so I will say something about parents and parenting.

Let’s start with Mencap’s Objects as a charity. We exist for the benefit of people with a learning disability – and then there is something else that is written in brackets in our objects, that we exist also for the benefit of the families and carers of people with a learning disability. It is almost as if families and carers might be an afterthought or a secondary consideration. They are not. The reason for this is that you cannot separate understanding or supporting an individual from thinking about or considering their family.

Research evidence supports this argument that individuals and their families cannot be separated. In the UK and similar countries, the way that we bring up our children as parents and what we are able to invest in our children has a strong influence on their life chances. Both of these aspects of parenting are influenced by poverty and deprivation. Poorer parents are more likely to experience stress and mental health difficulties and this affects their ability to develop the most positive and nurturing relationships with their children. Poorer parents also have fewer resources to invest in their children’s development and education.

So, strengthening families and especially supporting parents is one way to improve the life chances of people with a learning disability.

This is where we hit some problems. Other research data show that families of children with a learning disability face two very significant inequalities. Inequalities are differences in the health or social well-being of a group of people compared to other people in the UK. Inequalities are differences that are avoidable – that we can change. Inequalities are not differences that are fixed by biology or genes, or that parents somehow deserve, or that are somehow their fault.

One inequality faced by parents of children with a learning disability is that they are more likely to live in poverty. Children with a learning disability are more likely to be born into poverty, and also families of children with a learning disability are more likely to end up in poverty. So, parents face the stress of poverty and they have fewer resources to invest in their child.

A second inequality is that parents of children with a learning disability are two or three times more likely to experience high levels of stress or have mental health problems when compared to other parents. Again, this affects the ability of parents to nurture their child. Very worryingly, these inequalities in parents’ health are already found by the time their child is five years of age. Once established, these inequalities are hard to deal with and probably get worse over time.

What does Mencap need to do for families? My suggestion, perhaps my challenge to Mencap, is that the focus should be on what to to do about these big inequalities facing parents and families of people with a learning disability throughout the UK. This will not be easy, but who else will take on the challenge? This is about injustice, unfairness, and things happening that are just not right. For families, every new change to policy that makes things worse, every cut to services, is like kicking someone when they are already down. Is that really what we want from society? Mencap needs to be there to pick people up, to shield them from the blows, and to fight for change.

What I have said so far probably sounds like a familiar story for a charity. This is how all charities talk, especially when they want your money.

To finish though, I’d like to offer some additional perspective on families. The message of the Christmas story is also one of hope. Although the challenges facing families are real, there are at least two areas of Equality, not INequality, that are worth mentioning.

The first is one that I cannot prove with my research evidence. Parents of children with a learning disability love their children just as much as any other parent. There is no inequality there.

The second Equality is something I can support with good research evidence. Although they report more stress than other parents, parents of children with a learning disability report similar levels of positive well-being and positive perceptions about their child when compared to other parents.

So, a second challenge for Mencap is also to harness this love and positivity to work WITH and alongside families of people with a learning disability to change the inequalities. I hope that all of you in this church tonight, and all of your families, will be with Mencap on this journey. 

Thank you again for your support.

Nadolig Llawen, Merry Christmas.

Expunging radical behaviourism from history

Simon Baron-Cohen argues that Radical Behaviourism ought to be retired as a scientific idea []. The nails in the behavioural coffin seem to be that the development of behaviour analysis stopped with Skinner in the 1950s (it is hard to see where the ideas of modern behaviour analysis feature in this retirement anti-eulogy), and a killer whale trained by behaviourists attacked people.

I have been the first to be critical of behaviour analysts for their sometimes poor and insensitive ways of communicating about the use of behavioural methods for the benefit of humankind [see and also]. In addition, like every other area of applied psychology and clinical or educational intervention, there are examples of poor and also unethical practice by behaviour analysts. Poor practice and unethical behaviour are not unique to behaviour analysis, but equally behaviour analysis is unfortunately not immune to these problems.

Rather than a direct critique of Baron-Cohen’s suggestion, I thought that I would imagine a world in 10 years time following UN action to expunge radical behaviourism from history and so to remove all intervention approaches developed from these historical ideas. Here are a few of the headlines:

Nuclear melt-down around the world
Unable to use evidence-based practices of behaviour-based safety, nuclear reactors have melted down around the world and every government has shut down power generation reactors. Although heavily automated, the nuclear industry has to rely on some human beings to make it work safely and effectively. The ability to analyse why safety staff fail to follow safety procedures, and to base training and supervision arrangements on these analyses, was outlawed this month in an effort to expunge radical behaviourism from history. Behaviour-based safety was built on core scientific concepts derived from the early work of Skinner and then more than 60 years of additional scientific development.

All-time high for rates of suicide
Untold misery has affected families around the globe as suicide rates hit an all-time high. In the UK, the National Institute for Health and Care Excellence was forced by a government bill in 2017 to remove Dialectical Behaviour Therapy (based on radical behaviourism, expunged from history in 2014) from its list of recommended interventions for suicidal people and those with Borderline Personality Disorder. The UK healthcare system has struggled to offer effective treatments and support, and this is reflected in a report on suicide rates published today by the Office for National Statistics.

Teachers no longer allowed to teach
Mass protests by teachers in every country of the world led to a total shut-down of education systems internationally. Teachers’ leaders were angry at the loss of almost all of their effective teaching strategies. One teacher remarked: “No-one told us that nearly all of our evidence-based education strategies were based on motivational principles and learning approaches derived from radical behaviourism. We thought Skinner and his followers were devils. How are we going to teach the world’s children now? This is the end of society as we know it.”

Shock move as children with autism no longer able to communicate
The Picture Exchange Communication System (PECS) has been helping children with autism to communicate for more than two decades. PECS symbols have been made illegal during crack-downs on underground use of radical behavioural ideas. The Police have been confiscating the PECS materials and burning them in bonfires in towns and cities throughout the UK. Children with autism have offered little complaint, but then they have no way of expressing their views any more. Spray paint graffiti outside one special school read: “Who’s unethical now, and where’s our voice now?”.