So many words we use as if we had a common understanding what they mean: “inclusion” for instance, or “needs”; “special educational needs” or “learning disability”.
A few months ago, we finally, after very many years, successfully, or so we thought, saw our adult daughter moved from the “physical disabilities team” to the “learning disabilities team”. Today, we learned that there was a flaw in the assessment and that she must be re-assessed – parents not invited, by the way.
We’ll cope. But it all seems such a waste of time and scarce public resources: our daughter is and always has been a person with considerable learning disabilities. And, no, I’m not going to list here all the things she cannot do: we’ve just done that for the Department of Work and Pensions who want to assure themselves that she is not able to work. As I say, we’ll cope.
But in using the term at all, we assume we all know and agree what “learning disabilities” are; especially as distinct from “physical disabilities”. What’s even more confusing, is that our local authority years ago emphatically disavowed the “medical model of disability” but has continued dividing adults with disabilities into two care teams based on medical criteria.
In my previous posting, Can You “Do The Math” On Neurodevelopmental Problems? Or Is It Just Me? I expressed concern about confusions created by the reporting of number, arising from a a report on the work of the Cerebra Foetal Research Project at the University of Barcelona. Today, I am concerned about the confusions created by the use of words.
Returning to that same report, and reading the same two paragraphs but with attention to words rather than number:
One in ten children has neurodevelopmental problems. It is estimated that about two thirds of these are of prenatal origin and in most instances, the problem occurred during foetal life, long before labour started. Severe forms of brain damage affect about 2/1000 of all new-borns and are expressed by serious complications including cerebral palsy and/or intellectual disability.
The vast majority of brain problems, however, are manifested as subtle developmental disturbances. These cases are not associated with overt brain injury, but with brain reorganisation and are expressed mainly as alterations in cognition, thus affecting behaviour, social relations, neuromuscular regulation, learning and memory. The impact of these ‘milder’ neurological alterations in the quality of life cannot be overemphasized. Because they are of milder nature, they mostly go unnoticed in early months and even years of life.
We are here invited to accept the division of children with “neurodevelopmental problems” into two categories: those with ‘severe forms of brain damage …. expressed by serious complications including cerebral palsy and/or intellectual disability” and those (the vast majority”) with ‘milder’ forms “manifested as subtle developmental disturbances”.
These latter are, apparently, “expressed mainly as alterations in cognition, thus affecting behaviour, social relations, neuromuscular regulation, learning and memory.”
I do not accept this as a useful or coherent distinction. Children and adults with “severe forms of brain damage” experience “quality of life” issues precisely related to affects on “behaviour, social relations, neuromuscular regulation, learning and memory” just as much as those with milder forms. Our daughter is such a person.
Her primary impairment is cerebral palsy. According to the categorization above, she is among those with “‘severe forms of brain damage …. expressed by serious complications including cerebral palsy”. According to the local authority she … well, which team would you allocate her to?
And that, in a nutshell, is why the words we use, as well as the numbers, are important. Because it has to do with the allocation of resources. With learning who we are. With becoming and being an adult. With citizenship.