Much as I like social media, this week reminded me of what it's not good for. It's never good for dealing with subtlety or relationships that are complicated and this was illustrated in spades in a discussion that became an argument around the use of the word “children” when referring to adult sons and daughters with a learning difficulty and the broader issue of infantilisation.
And for anybody who isn't familiar with the term: infantilisation is a theory used to describe the ways in which people can be presumed to be incapable or less able to make their own decisions or do things for themselves, because of old age, gender and disability. It expresses itself in language, assumptions and decision making. Studies have shown that infantilisation can be disempowering, discriminatory and even abusive and it is not surprising that activists across a range of sectors see infantilisation as a major barrier to equality and a rights based everyday life.
For people with learning difficulties there is often a widespread presumption of incapacity. Some people believe, often without really thinking about it, that it is appropriate for an adult with a learning difficulty to be treated or spoken to in a child like manner; that it is reasonable to make decisions on their behalf; and that proscribing their agency and autonomy is ultimately in their best interests.
For me, perceptions of infantilisation lie at the heart of many of the tensions that exist between self-advocate campaigns and some parent led campaigns for the rights of people with learning difficulties. Not because parents and families deliberately seek to undermine the rights and agency of their loved ones but because some degree of infantilization of daughters and sons is inherent in much of anybody’s parenting but being aware of it can be especially problematic where a child’s development has not progressed normatively.
I was talking to a parent yesterday who made the point that for most parents their child’s progression to adulthood happens in stages and is marked by a series of transitions and expressions of autonomy and change. Whereas for the parent of a young person with severe learning difficulties the transition to adulthood is often less clear cut, seemingly marked more by changes in a parent’s legal status and in their ability to make decisions on behalf of their loved ones than by changes in their loved ones ability to actually make those decisions or do things for themselves. Or at least that’s how it may seem.
For the people with severe learning difficulties that I know, the emergence of autonomy and independence takes place in the context of continued dependence and behaviours that may have been present in childhood and that would normally be associated with childhood. So, it’s incredibly easy to presume that somebody hasn’t developed the same need for autonomy and control that any other adult would have. The challenge for the families of people with severe learning disabilities is to resolve the conundrum that continued dependence in some areas does not equate with an inability to take control of important areas of everyday life.
To give you an example of a very simple way in which this can manifest itself. As I sit here typing this my son has decided to print off some pictures from a Fireman Sam video that he has downloaded from a You-Tube video. The subject matter is not something that most 24 year olds would choose, but many of the technical skills involved in being able to do what he’s done are those of a skilled adult. He’s also just decided to start pinning some of his pictures on the wall (you can see one of the pictures he has decorated the house within the image above), declaring “How decorative” as he does so. Personally, I’m not convinced and the question for me is, do I respect his right as an adult to be able to make the choices that he wants to make, or do I dismiss them as an expression of a childlike choice and take the pictures down. In short do I infantilise his actions and decisions inorder to dismiss them? The answer for me is simple: this is his home, it’s his printer, paid for with his money and he is so chuffed with himself, so they will have to stay. But because it is also my home, we’ll have to come to a compromise about how they are presented so I’ll be looking find a couple of frames in which to hang them and create a collage …or two.
For me this example illustrates the difference between the theory of infantilisation, which I have a lot of time for, and the contradictions that can be inherent in supporting an adult individual’s choices. I have no doubt that if my son lived in a residential home or an inpatient-hospital they would manage his decorative instincts by restricting his access to a printer or worse still a computer. The example also illustrates the fundamental difference between the lived experiences of families which are full of contradiction and compromise, and the theories of practitioners, academics and activists; who sometimes seem to forget that at best theories are just an aid to interpreting those contradictions and compromises of people’s lives and at worst, yet another form of oppression.
As for people using Twitter to argue about complicated stuff - well it's just my opinion but nobody wins.