The Humanity Quotient

Kerry Fender by Kerry Fender Additional Needs

Kerry Fender

Kerry Fender

Down’s Syndrome, my family and me – one mum’s account of family life with an extra chromosome.

The thing I’ve been reading this time, which started me thinking, was a short article about how recent studies into Rett Syndrome and intellectual impairment have shown that clinicians have been mistaken all along about the degree of intellectual impairment that Rett Syndrome brings.

This is because they base their assessment of intellectual impairment on the person’s IQ score.

But an IQ test requires those being tested to be able to indicate a response, so a person who can’t talk, or move their arms to tick a box, or to point, is at a distinct disadvantage.

Rett Syndrome affects (among other things) the ability speak and the ability to control arm movements. But when researchers modified some standard tests so that eye pointing, or eye gaze communication, could be used by the test subjects to indicate their response, what they found was that the degree of intellectual impairment was often much less than clinicians had traditionally assumed.

These findings have implications for other conditions that leave those affected unable to speak or move, such as Motor Neurone Disease.

I know very little about either Rett Syndrome or Motor Neurone Disease; what piqued my interest in the article was the idea that clinicians -- doctors and the like -- could be wrong about the level of intellectual impairment present in a particular condition.

You see, I have a son with Down’s Syndrome, a condition firmly characterised in the minds of many by a lack of intelligence – a low IQ.

And a low IQ is (wrongly) synonymous in the eyes of the world with a lack of ability to think or learn, and a lack of ability to understand, or even feel, emotions: the stereotypical ‘happy’ personality of people with Down’s Syndrome is dismissed as being due to stupidity, by the trite phrase ‘ignorance is bliss’ (by people who don’t realise how much more ignorant they are themselves).

Some even associate it with a lack of awareness of physical sensation: more than one parent I know of has been asked (by doctors) if their child can feel pain.

At worst, a low IQ is thought of as rendering the person ‘animalistic’, lower in humanity than those with a higher IQ. This leads not only to wrong assumptions, but to ill-treatment and discrimination.

I was surprised to find that on my son’s EHCP his level of learning disability is described as moderate; from what I have observed in him I would have thought it was mild.

I assume, therefore, that the description is based on his IQ, which suggests a score of somewhere in the range of 35-50 (a score of between 90 and 110 is considered to be the average).

Yet he is inquisitive and alert little boy, who learns quickly by observation and imitation. At age nine his sight-reading ability is comparable to that of a typical ten-year-old, though his grasp of meaning and context is not so advanced and needs some more work.

He knows how to write, but low muscle tone means that his fine motor skills are relatively poor: it’s more difficult for him to grip a pencil and his fingers quickly become tired, leading to deteriorating letter formation (I really must teach him to type).

He has a good memory, especially for people’s names. I suspect, based on what I have observed, that he has a good memory for other things, too.

Those things are harder for him to put across, though, as they require the use of expressive language rather than just one word, and he struggles to organise the words into the right order and push them out of his mouth, even though he knows what he wants to say.

He notices, long before anyone else in the house, if I am unwell, or just not my usual self.

All of which makes me wonder: what exactly is IQ, and how does it relate, in real terms, to intelligence?

By definition a person’s IQ is a number representing their reasoning ability, measured using problem-solving tests, compared to a statistical norm, or average, for their age. So, basically, it’s just a test score.

Standard IQ tests measure:

Spatial ability

Mathematical ability

Memory ability

Language ability

However, the tests do not differentiate for, or take account of, environmental factors. As discussed above, conditions which limit the ability to speak or move make taking a standard IQ test next to impossible.

Impairments in hearing and vision can also affect a person’s ability to perform in the test, and can interfere with the ability to acquire the information needed to take the test successfully.

I would also suggest that factors such as the ability to concentrate, or to sit still, might well have a bearing on a person’s performance.

Coming from a background that limits your opportunities for learning is also an environmental factor that will affect test performance.

It is no coincidence that the estimated average intelligence for people with Down’s Syndrome have been trending steadily upwards in recent decades – since we stopped shutting them up in institutions, and allowed them to have a family life and an education instead.

There are some things that standard IQ tests do not measure, although they are qualities which could be considered to form part of a person’s overall intelligence.

These are:

Creative ability

Social skills

‘Wisdom’ (what constitutes wisdom, anyway?)

Acquired abilities

Emotional Intelligence*.

*Some psychologists believe that standard measures of intelligence (IQ scores) are too narrow, and do not encompass the full range of human intelligence.

They suggest that the ability to understand and express emotions can play an equal, if not more important role in how people fare in life.

People with Down’s Syndrome often seem to demonstrate an innate ability to pick up on, empathise with, and respond appropriately to, the emotions of others, and can sometimes be acutely sensitive to unexpressed emotions, such as the ‘atmosphere’ in a room.

Very likely they would score highly on any test that allowed them to express their emotional intelligence. Many supposedly very intelligent and intellectual people would not do so well.

I’m sure we can all think of one or two eminent philosophers who might fall into this category.

Standard IQ tests do not measure adaptive behaviour, either. Adaptive behaviour is a measure of how well people function in their environment, e.g. quality of day-to-day living and work skills.

Researchers have found that children and young adults with Down’s Syndrome have significantly higher adaptive skills than their low IQ scores would suggest.

When we take all of this into account we can see that IQ scores alone are not an absolute measure of a person’s cognitive abilities.

In any case, neither IQ scores, nor perceived intelligence, should ever be regarded as a measure of a person’s worth or humanity.

For clinicians to make mistaken negative assumptions about cognitive ability based on a person’s ability to successfully take a standard IQ test is far more grave an issue than it might at first seem.

For too long, they, we, have conflated IQ scores, intelligence and cognitive function to produce a grotesque, dystopian, tariff of level-of-human-ness.

Those whose IQ scores put them at the bottom of the tariff are dismissed as being unable to think, to learn, unable to feel and understand emotions or physical sensations, and unable to appreciate and enjoy life as we do; they are dismissed as less than human and treated accordingly. Or not treated.

This is why people with learning disabilities die, on average, 27 years younger than the rest of the population; not as an inevitable consequence of their disability, but often due to delayed treatment, lack of care, abuse and neglect.

It’s why approximately 90% of babies found to have Down’s Syndrome prenatally will be aborted.

Perhaps it’s also why Jeremy Hunt couldn’t spare the time to answer an Urgent Question about the LeDeR Learning Disabilities Mortality Review.

All because IQ scores are falsely considered to be the measure of a person’s level of human-ness and worth.


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