(There is a link to an easy read version of this blog at the bottom of the page)
Have you ever wondered why there is so little research involving adults with “severe” learning disabilities? In fact, have you ever wondered why there is so little of anything involving people with “severe” learning disabilities. It’s not because they don’t have anything to say or the need to have their lives understood or shared, it’s because it’s not straightforward. The capacity and capabilities of a person with “severe” learning disabilities often exist beyond the shared codes and understanding of our everyday language. For most of us language is the means through which make sense of our world and the way in which we consent and approve of the things we have done and the things that are done on our behalf. Having language as an easily accessible medium through which to represent our capacity and consent, is a cornerstone of our ability to lead a rights-based life. But for a great many people with learning disabilities this over reliance on everyday language as a means of illustrating their capacity is discriminatory and plays a significant role in excluding the “voice” and presence of people with severe learning disabilities and/or autism from everyday life.
A few years ago, we had to make a decision about whether Mikey should continue going to college for four days a week. Without going into too much detail about the situation, a number of people in his life felt that it was in his best interests to go for four days a week, whilst he seemed to be finding college increasingly stressful and seemed to want to stop. I think he was about 19 at the time and the problem with the situation was that most people in his life felt that he lacked the capacity to make the decision for himself and that as a result of that apparent lack of capacity the decision could be made for him and that it was therefore reasonable to expect him to live with the consequences of that decision.
The challenge for all of us, but in-particular his social worker, was to make a judgement about whether or not Mikey had the capacity to understand the choices that were available and to make the decision for himself. The social worker’s judgement was complicated by the fact that Mikey would say different things to different people depending on what it was he thought they wanted him to say, something that I was reminded of in a recent blog by Mark Neary. And it is worth noting that Mikey also has different expectations about his freedom to express his own choices depending on his environment and the people he is with at the time.
So, we had to look beyond the inconsistent use of language and to make a judgement about whether or not he understood the practical implications of what college was, and whether or not he had a good enough understanding of time in-order to make a decision about what was meant by going to college for 4 days. In keeping with the principles of the Mental Capacity Act we used an alternative form of communication to support Mikey in being able to express his choice. Because whilst his use of the spoken word can be inconsistent, his use of text and image is far less so. So, drawing on the understanding we have of the way in which he communicates, as-well as Mikey’s skills in using information technology we agreed to develop a simple PowerPoint animation that would allow Mikey to express a preference for the choices that lay before him in a way.
In the end Mikey was able to express his preference to all of us and didn’t go to college for four days a week. But if his social worker had adopted an approach similar to that which had been employed in Steven Neary’s recent DoLS assessment then it is likely that a formal best interests assessment would have taken place and it is equally likely that it would have been judged to have been in his best interests to go to college for four days a week.
This is just a small example of why thinking creatively matters when making decisions about a person’s capacity to make their own decisions. It is why the knowledge and understanding of the people who know a person best is so important when assessing a person’s capacity. It is also why the issue of consent can sometimes be problematic.
We are currently working on how to manage the issue of consent for the Rightfullives.net exhibition. We have developed a consent form for people who have no difficulty in understanding written text and we have created an easy read version for people who prefer a more visual approach, but who nevertheless have the capacity to decide for themselves whether or not they want to take part in the exhibition. But what about people who may or may not have the capacity to decide for themselves? How do we encourage and manage the participation of people whose capacity to choose and to consent may be as nuanced as Steven and Mikey?
I am currently thinking of submitting some of Mikey’s photos to the exhibition as a stop-motion video. When I ask Mikey if he wants to take part, how I ask him will have a significant effect on the likelihood of him being able to make an informed decision and the kind of answer he would give. There are a number of ways in which I could approach the issue:
1. I could simply say something along the lines of: “Mikey would you like some of your pictures to be used to make a stop-motion video for an online exhibition about the human rights of people with a learning disability”;
2. I could create an easy read invitation asking him the same thing
3. I could break the process down into its components and then get his permission to do each element at the time that each decision needs to be made.
I’m pretty sure that neither of the first two approaches would be successful in helping Mikey to make a decision, so I’ll probably opt for the third approach. Which as I see it would involve four stages.
The first stage of co-producing Mikey’s exhibit would be to select a number of his photographs and use them to create the beginnings of a very simple stop-motion video. So, I would put a small selection together and show him what I was doing. If he approves I’ll continue if he doesn’t I’ll accept that he does not want me to take his photos and use them in this way. Let’s presume he’s OK with the idea.
The second step would be to encourage his involvement in selecting the images that we are going to use. There may be some that he would be perfectly happy to use and others that he wouldn’t. For example, I would be very surprised if he were to select an image of him, although you can never say never.
The third step would be to ask him if he likes the final exhibit. If he does I’ll upload it to the exhibition space.
The fourth and final step would be to test to see if he is happy with viewing it online and if he is, he and I will be displaying an exhibit in the Righfullives Exhibition.
The principle behind deconstructing the consent process in this way is that it makes understanding what taking part in the exhibition means in a way that is less dependent upon formal language. For Mikey the process of taking part in the exhibition will be broken down into concrete steps and his participation will be dependent upon him consenting to each step.
There are issues with adopting this approach. Some may well argue that Mikey is being led from one step to another and that whilst he may have the capacity to make a decision about each element, this doesn’t mean that he understands what taking part in an exhibition actually entails. And they may well be right which is why, at each stage I would not only be asking him about whether or not to participate in each step, I would also be making a judgement about whether or not his participation is in his best interests. In this way he is not being compelled to take part in something he doesn’t want to take part in but at the same time a judgement is being made about whether or not a decision is likely to cause him harm.
This is just one example of one approach to the issue of consent. As a collective we – the people who are pulling together the Rightfullives exhibition – do not have a set of guidelines stating how you should or should obtain the consent of all involved in the production of the exhibits that you submit; but we do expect you to have used your understanding and insight, to do your utmost to involve people in the co-production of exhibits and in obtaining consent. And where this is in doubt, we expect you to do your very best to ensure that a person’s participation in the exhibition is ultimately in their best interests.
(Click on the link to download an easy-read version of this blog in Word.)