Do you remember when you were a teenager, the absolute last thing you wanted to be was normal? Normal was not cool. Everyone wanted to be unique and different (or exactly the same kind of unique and different as everyone else in their particular tribe). Normal was boring!
In teenage terms I’m now practically in my dotage and I’ve realised that I’m not going to set the world alight with my unique point of view. I now think normal is okay. In fact I’d dearly love to be normal. But I’m not.
In my professional life I am a special educational needs teacher. Part of what I do is to test students’ educational ability. If their scores are below a certain level they trigger more support or extra time in exams. This requires me to deal in statistics. I measure people against their peers, calculate scores and average bandings: average, low average, below average, well below average. It is a necessary evil in a world driven by data. It’s my job.
Of course there is a human side to my work and I always try to accentuate the positives. Every student has strengths. But the system isn’t really interested in strengths (unless it’s in terms of good exam results). Low scores trigger concessions. That’s the bottom line.
Still, I am painfully aware that the human story is always more than the scores and the stats. A person may have ‘well below average processing speed’ but they might also be incredibly accurate, very conscientious, or entrepreneurial, or artistic, or kind, or good with people. It just may take them longer than (some of) their peers to put their ideas onto paper or to read. But administrators don’t and can’t acknowledge all those elements of a person because they need to process data. It is reductionist but as with most disabilities, learning difficulties tend not to be defined by what a person can do, but by what they can’t do.
What impact does this have on a person? I think how information is delivered is incredibly important, but no matter how sensitively it is handled, having your weaknesses baldly presented to you in figures, percentages and averages is difficult to say the least.
I know this as well as anyone. I don’t have a learning difficulty but I do have a chronic health condition and the medical profession is just as littered with statistics and percentages as any educational setting, if not more so. Doctors’ dependency on stats and definitions of what is ‘normal’ is all encompassing. Every interaction is laden with probabilities and norms.
I know why percentiles and norms are used, I use them myself. Stats are certainty in an uncertain world, a bedrock of objectivity in emotive situations. They offer a bench mark for decision making. But in my experience, they have rarely done anything other than make me feel like a total, abject failure.
I have sat in rooms with doctors and specialists and been compared, unfavourably, to a ‘normal woman’, (granted, the doctor in question did have the grace to look uncomfortable after I laughed out loud). My current specialist more sensitively describes me as ‘very unusual for a woman of my age’ and certain parts of my anatomy as sub-average.
This is the sort of thing that happens ad-infinitum in a medical setting. Standardisation is necessary in busy institutions. I have gone for procedures and have had to remind the nurses that I don’t have a colon and I can’t take the standard drugs they are trying to give me. The accompanying look of surprise and panic on the nurse’s faces is not reassuring.
I can’t take certain drugs but hospital pharmacists have actually changed prescriptions and given me the standard drugs! Why? I can only guess because they are on autopilot and are reverting to standard procedure.
In essence, everyone seems to be expecting someone more ‘standard’ or ‘normal’ than me. Which is fair enough, but my history is all there in my medical notes for anyone to read. As a consequence, I feel I have to be constantly vigilant when I’m in hospital, at the doctor, at the pharmacist. But no matter how vigilant I am and how many times I remind medical professionals of my condition, I am still put in ‘difficult’ positions such as undergoing procedures without pain relief (such as a memorable needle into my ovary) or am given the wrong drugs because I am NOT NORMAL.
All of this conspires to generate a feeling of freakery and abnormality that is hard not to internalise. I often jokingly refer to myself as a ‘medical oddity’. It’s not really funny, but if I didn’t laugh, I’d cry. And sometimes I do of course, particularly when faced with the stats. Here they are in all their glory courtesy of doctors, waiting rooms, NHS literature and the web:
Ulcerative colitis has a prevalence of approximately 240 per 100,000* – 0.24% of the population.
25% of Colitis sufferers will require surgery – 0.06% of the population
Of those 50% will be unable to conceive naturally – 0.03% of the population
So 0.03% of the population share my own particular flavour of abnormality! I guess I’m pretty safe in saying I’m part of a minority group there. The stats tell a story, which is basically that I am not normal. In medical terms, I am defined by what I can’t do, not what I can do. It is shaming, it is demoralising and it is isolating. And frankly, it can f*ck off. I’m sick of it. Because really, I’m not that unusual. People get ill all the time.
What is ‘normal’ anyway? Does it even exist? Can one person be totally ‘normal’ – physically, educationally, socially, mentally, sexually, financially – and would anyone even want to be? As the fantastic Francesca Martinez writes in her autobiography ‘What the **** is Normal!’: ‘Have I ever met a normal person? What do they look like? Where do they live? Or work? Or play? What do they wear? What films do they like? What nooks do they read? What food do they eat? What do they like to do with their leisure time? Are they married? Single? Divorced? Living in sin? Old? Young? In between? Are they good with people? Or computers? What shampoo do they use?’
Francesca Martinez is a comedian, actress and writer. She also has cerebral palsy and much of her work challenges notions of disability, difference and normality or to put it another way, she asks the question what the **** is ‘normal’ anyway? Her autobiography documents her growing up, carving out a career and coming to terms with her disability – denial, acceptance and defiance. It’s an inspiring read. Here are my favourite quotes:
‘How could I have bought into the fiction of a ‘standard’ person, who is right and correct and proper in thought and physical form – an imagined someone we are expected to aspire to be?’
‘Everyone’s different and that’s what makes us all the same. So, don’t let anyone make you feel abnormal because it doesn’t exist.’
So, being made to feel abnormal is crap but what do I really expect from the medical profession? Aren’t they just people trying to do a job in difficult circumstances? Well, yes. And let’s face it, some news no one ever wants to hear, no matter how sensitively it is delivered.
After all, who am I to call these people out? I’m part of the problem! I churn out stats for The Man! Am I just a hypocrite? In all honesty, probably. I am a cog in a data driven world. While I try to be sensitive of the people I work with and look at their strengths as well as weaknesses, I still have to focus mainly on the weaknesses. And doctors have to do that too. That’s just the way the system works. I get it.
I really do admire health professionals and have been treated by some wonderful people. Free healthcare in the NHS is amazing and I am forever grateful for that. But, there’s a but….
But, despite all of this, I think that the way the term ‘normal’ is used is problematic. In his documentary ‘Who Are You?’ Grayson Perry recently commented when talking to Jas, a young transgender man, that ‘I sometimes think some of the most dangerous words are ‘normal’ and ‘natural‘.” I agree. Normal is particularly problematic for those, like me and very many others, who fall outside of the norm in some way and that’s the point I suppose. Normal is a club and not everyone meets its strict entry requirements. It is not diverse by definition, and leaves many of us out in the cold. Being made to feel abnormal is incredibly lonely and isolating. It messes with your sense of self and your self esteem.
I also think that there is an over reliance on statistics when it comes to health. Yes, stats may inform your choices about what type of treatment to have, or discourage you from bothering to have treatment in the first place, if you have the luxury of choice. But most of us are between a rock and a hard place when it comes to medical choices e.g. Do you want major surgery or a new drug with unknown side effects? Do you want fertility treatment or to give up on the idea of children?
Being told that part of you is sub-average doesn’t help anyone. It is just demoralising to hear terrible statistic after terrible statistic. It doesn’t affect the outcome of treatment, it just makes the whole process more painful and frightening. It kills hope and makes you feel freakish. I would prefer a frank discussion about my options with my healthcare professional, without referring to a graph of outcomes for women my age where I fall very short of the norm, just to reinforce how utterly f*cked I am.
We are all diverse, some more than others. Not all of us can comfortably be measured against age-based or any other norms. I’m not normal but then, no one truly is.
ARCADE FIRE Normal Person
Is anything as strange as a normal person?
Is anyone as cruel as a normal person?
Waiting after school, you want to know if you’re normal too
Well, are you?
I’m so confused, am I a normal person?
You know, I can’t tell if I’m a normal person,
it’s true I think I’m cool enough, but am I cruel enough…
Am I cruel enough… for you?
Break it down until everything is normal now
Take their tea at two, all the normal people, they do
They burned the jungle down, while you were sleeping it grew
You dream in English now, in proper English
Look how you’re just the same as me
If that’s what’s normal now, I don’t want to know!
Mama, don’t make me go!
When they get excited they try to hide it (…No!)
Look at those normals go!
If that’s what’s normal now, I don’t want to know
If that’s what’s normal now…
Maybe if you have together, you can make the changes in our hearts
And if you hang together, you can change us, just where should you start?
I’ve never really ever met a normal person (…like you)
How do you do?
A sympathetic voice
on the end of a line:
It’s very unusual
For someone your age,
1-4% of women.
On the edge of a bell curve
The room draws away.
Someone had to
That someone is me.