Joanna Grace provides a personal view on whether we should always presume capacity for young people with PMLD
I have often heard it said that the best thing for children with profound and multiple learning disabilities (PMLD) is that we start from a position of believing that they can understand everything we say and are fully capable. In other words, people advise that we assume they are not people with PMLD but are instead people with profound and multiple barriers to learning (PMBL) – that is, they have full intellectual capacity but it is masked by their physical impairments.
Why do people believe presuming cognitive competence is the best thing to do? Is it because we want to believe others are like us? Perhaps this why I find the assumption difficult. As someone who is neurodivergent, I have personally suffered from, and continue to battle against, the risks inherent in that presumption of “like-me-ness”. People assuming I am like them does me harm.
Presuming children with PMLD are actually children with PMBL is heralded as positive, as having high expectations, as being respectful, but it can be ableist. Linking the assumption with a narrative of high expectations says very clearly that to have cognition is best, and the more of it you have, the better you are. The high expectation is that the children will be cognitively able.
See them as they are
The “profound” of profound and multiple learning disabilities was originally there to indicate the level of intellectual disability as being profound. If a child truly has profound intellectual disabilities, they are not capable of learning formal methods of communication. I have met children who have only the top of their brain stem – the ability to blink and smile – but quite literally no brain in their heads. By saying they will not learn formal communication, I am not having low expectations of them, I am acknowledging them as they are. It is the same as me pointing out that you do not have wings, so you cannot fly. I am not making a judgement on this. If I go on to say that I have high expectations that you will in time fly, then I am adding in judgement and saying flying is best. It may well be true that the majority of children currently labelled with PMLD are in fact children who face PMBL, but that is not the same as saying children with PMLD do not exist. There are children whose intellectual impairments are so severe that they will never be able to master formal methods of communication. And there are also children who have degenerative conditions that mean they will lose the skills they have mastered. A narrative of aiming high does these children no favours.
Imagine you have a class with nine children facing PMBL and one child with PMLD. That lone child is at enormous risk if they are presumed to be understanding everything around them. Consider their experience, and that of their family, as they are told they can understand but we just have to find a way. All the time we do this, we miss connecting with them as they truly are. Notions of a sensory curriculum may seem dated in a technological age but they still very much have their place in our classrooms.
Wasted time
Consider how precious the time of a child with PMLD is, as it is likely that this is a person who is life limited, making the hours of their day amount to a bigger percentage of their life than ours do. If we spend an hour a day for two years on a communication device that they cannot access, that amounts to a lot of time of not being able to connect. To waste anyone’s time is unkind; to waste time this precious is worse still. Even if after those two years they are able to indicate a simple “yes” and “no”, was it really worth the time? Were they not already indicating their preferences through their own idiosyncratic communication methods? Could we not have saved them time by simply paying attention to the way in which they already communicate?
Imagine the family, who have had to go through the trauma of those initial messages about their child with PMLD and the journey of acceptance they have been on. Telling them that their child can communicate, that it’s just a matter of time and equipment, invites them to pick up hope again when this might not be realistic. What’s more, there’s a hidden message in that invitation – that if their child can master this, they are in some way “better”?
What if they can’t master the strategies you offer? What if they fail? Do you keep trying, as blind optimism is better than acknowledging their reality, because their reality is so awful to you and their decline so apparent? Are your “high expectations” actually a front for a prejudice hidden in you that says to be cognitively disabled is terrible?
What is the alternative?
Of course we must make every effort with alternative and augmentative communication (AAC); amazing things are possible, but we must do this in a reflective way. If any setting or organisation tells you they do this for everyone with PMLD, let it be a red flag to you. We are all different, and within the population of people caught under that umbrella term of PMLD the variance is huge. We should always have high expectations but they should be measured against a guide that is relevant to that particular child. We might have high expectations that the child will engage, connect and socialise, that they will be present in a moment and that they will love and be loved. And yes, we might measure these expectations against cognition, but only if we are sure that for the individual child this is the best measure.
In a world of high expectations we need to be absolutely sure that the measures we choose are chosen in a child centred way, and not placed there by edicts from on high or influenced by generalised assumptions of what is best for everyone. Value each life as it is. Value the hours within it. Value the skills already present. Measure against measures meaningful to the person, and watch out for those “everyone must” or “everyone can” red flags.
About the author:
Joanna Grace is a sensory engagement and inclusion specialist, author, trainer, TEDx speaker and founder of The Sensory Projects.
TheSensoryProjects.co.uk
@Jo3Grace
@TheSensoryProjects
Author: Joanna Grace
Joanna Grace
Joanna Grace is a sensory engagement and inclusion specialist, doctoral researcher, author, trainer, TEDx speaker and Founder of The Sensory Projects.
W: thesensoryprojects.co.uk
T: @jo3grace
F: @JoannaGraceTSP
