The Bake-Off contestants race to uncover today’s technical challenge. In their haste, one contender reads the instruction to add two teaspoons of salt as two tablespoons and the resulting cake is a disaster. Measurements are important. Using the wrong ruler can give inaccurate measurements and misleading information.
People get it wrong all the time, in big ways and in small.
We have used GDP as a measure of a countries success…how might the environment and our lives be had we used another measure, such as wellbeing or happiness?
Self-measurement, rightly or wrongly
In your own life, how do you measure how things are going?
I have a weight limit, a line in the sand, if I cross it then all the vicious self-loathing thoughts are unleashed, uncaged and given free rein to destroy my self-esteem. Is this how I should judge my life?
When a business person, measures their worth by their rank on the career ladder and the size of their bank balance sacrifices time with their family in favour of career progression, do they lie on their death bed and think, “That was worth it”?
The teenager exposing their life on social media and measuring their worth by the ‘likes’ gained, knows the more of themselves they show the less of themselves they have. Do the increasing ‘likes’ guide them to safety or lure them onto the rocks?
There are dangers inherent in choosing the wrong measurement to use as a guide whether for ourselves of when we measure, or judge, others. If we are choosing measures to use on others, especially people with disabilities, there is enormous responsibility attached to our choices.
Measuring the quality of a life, rightly or wrongly
In mainstream education there are plenty of questions to be asked. I want to write here about three that relate to the lives of people with profound and multiple learning disabilities:
- Measuring the duration of a life.
- Measuring intellect.
- Measuring ‘like you’ness.
Duration
A good life is a long life, to live to a ripe old age is a measure of success, an accomplishment. To die young is a tragedy.
Whilst it is clear that very few people would wish to die young, I do not believe that the reverse of this: the long life, is necessarily the accomplishment we might presume it to be. Consider the person who lives a life decades-long by avoiding all pleasure, staying in, not meeting people, not connecting or doing, or really feeling. A long, plain, lonely, dull life. Is that a good life?
Contrast that with the child who embraces every minute of every day, feels every sensation, seizes every opportunity to love and be loved with abandon, but dies before adulthood can touch them. Is that a bad life?
Martin Luther King said it was the quality, not the longevity of a person’s life that was important. Measuring by length might lead us to take decisions about care that destroy quality. The two are not always separate.
Intellect
We go to school to learn. We measure intellectual progress. We value tiny steps towards this progress. In the world of special education, we are skilled at breaking this measurement down into ever tinier fractions and valuing everyone. We work tirelessly to nudge a person just a little further up this particular ladder.
What worth is a skill that takes half a lifetime to acquire? I am not saying that things that take a long time to learn are not worth learning. I am quite literally asking the worth of that particular skill. Because if you are going to spend a considerable chunk of someone’s time alive teaching them a particular skill you had better be very sure that that skill was worth that expenditure of those precious days, hours and minutes.
Consider a life limited to ten years, would you still want intellect to be the measure used at school…might you be tempted by a different one instead? Joy, connectedness, love?
Like-You-Ness
People with disabilities have historically not been given the respect of being considered human, they have been written about as ‘almost’ human, or sub-human. People with profound and multiple learning disabilities were once referred to as being ‘severely sub-human.’ It is no wonder then, that in a world where their humanity is only relatively recently recognised, that we should want to claim their ‘like-you-ness.’ We see this particular measure used often with regards to people with moderate learning disabilities, especially Downs Syndrome.
Look, they can have jobs like you. Look, they get married like you. Look, they can be beautiful like you.
This measure points towards a sameness. That to be valued you have to be the same or similar to everyone else. And however much we share in this humanity, this like-each-other-ness we are fundamentally different. Measures that teach us similarity is good, teach us difference is bad, and we are all different, so these measures undermine self-esteem for everyone.
And the ruler is limited, there are many things a person with profound and multiple learning disabilities will never do like-me. Does this mean they are limited to a more modest amount of worth than someone with greater physical or intellectual capacity?
Using the right ruler to measure the quality of a life
If we use the wrong rulers, however accurately we use them, our measurements will be wrong. Spending time searching for the right ruler can help us to guide ourselves and others to more meaningful fulfilled ways of living.
So what rulers would you choose? To measure how someone should spend their time? To measure a person’s value in society? To measure the quality of a life?
I’ve got two I’ll start you off with:
- To measure if a person has value, check whether they are alive. If they are, then their value is equal to yours, regardless of their capacity in other areas.
- To measure the quality of a life consider the amount of love within it, the opportunities to receive and to give it. The more plentiful these are the richer the life.
I think once you have these two firmly established you are good to go. Any you add to them needs to be done so with proper consideration of how they might affect these foundational measures.
Also read
- Sensory toys don’t work on their own.
- The joyful sensory world: Our differences and how we are all the same
- When my child welcomed your baby into the world
- Add your resource to SNJ
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Joanna is a qualified teacher who has taught in mainstream and special school connecting with pupils of all ages and abilities. Joanna has also worked in a consultancy capacity to support schools to further their provision for children with additional learning needs. Since setting up The Sensory Projects Joanna's work has expanded, and she regularly works with adult care providers, heritage settings and families. Joanna draws on experience from her own life as well as insight from the research world and her professional background to inform her work. Joanna has family members with physical disabilities and neurodiverse conditions and has also been a foster carer for children with complex disabilities. Joanna is autistic and this enables her to take in huge amounts of information on a particular topic, Joanna uses her ability to focus on the sensory world to inform her work. Joanna is currently studying for a doctorate in Identity and Belonging for People with Profound and Multiple Learning Disabilities.
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