More complicated than you might imagine: ‘The Case of the Confusing Categorisation’

Introduction

As stated by both Barlosky (2005) and Crisp (2007), stereotyping and categorisation form a fundamental element of our need for identity within society. Not only does an identity give a definitive framework to the way that we see ourselves and our place in the world, but also how we view others. Giving structure to our society via the use of categories promotes a feeling of comfort and order. We do not, generally, like the sensations experienced when somebody does not fit into a category. As stated by Crisp (2007) ‘We like things to make sense, to be coherent, to be predictable.’

Barlosky (2005) describes the way in which we feel uneasy when confronted with those who are not similar to ourselves, suggesting that this ‘brings to the surface apprehensions, predispositions and desires normally hidden in the “everydayness” of life.’

This piece of writing looks at the way in which categorising takes place in every day life, the need to stereotype one another and the identity that is constructed. It also suggests a feeling of loss of agency where there is no clear category and therefore a further search to define that person. As Crisp (2007) describes, stereotyping and categorising not only provide definition but can also serve to discriminate and foster prejudice. The Detective in this story experiences many frustrations trying to marry her job with the many facets of the identity of Child E. Crisp (2007) suggests that when ‘people come to realise that social categories are fluid, flexible and dynamic’, society may become a less prejudiced place. He proposes that we find positive ways to define individuals rather than negatively discriminating by using narrow and very specific pigeonholes.

Through the narrative of this story, Child E becomes more than a name on a piece of paper. She cannot tell her own story but by piecing together the information given to her, the Detective tries to define and pigeonhole her as per the request. This is not as straightforward a task as it initially Abigail Davison-Hoult : Rett UK 2 appears. Given the same information as the Detective, the reader is left to decide whether this is a progressive or regressive piece of narrative (Gergen, 1999, pp 70-71) and how to categorise Child E.

*At the time of this quotation, only girls were known to have Rett syndrome

The Case of the Confusing Categorisation

‘This one’s a doddle’ thought Detective O’Leary as she settled down at her work station. A new case was always a challenge though some were of course trickier than others. She had had her fair share of difficult cases to solve in recent months and was looking forward to tying this up in as short a time as possible. ‘Shouldn’t take too long’ she told herself. She wasn’t sure why it had proved as problematic to the others as it apparently had. ‘Honestly,’ she thought ‘some people couldn’t organise a piss up in a brewery. Need to get me in to sort out their mess!’.

The case had been forwarded by the Department of Categorisation. This department was one where organisation was key. The department motto was ‘A place for everything and everything in its place’ and the workers could often be heard muttering this as they went about their daily tasks; boxing and categorising anything and everything, using checklists to make sure that all bases were covered, and the item was classified correctly.

Actual objects were the most straightforward to categorise. They fitted easily into groups such as Furniture, Kitchenware, Games, Sports and Garden. Even animals were easy: under the Animal umbrella they were categorised under headings such as Domestic, Wild, Zoo, Farm and Jungle. People were where it got harder. For the most part, they could be shunted into categories with a little blurring of the checklists but occasionally, a case would come along that would throw a spanner in the works.

Detective O’Leary settled down to read through the case notes. This one was just a child. Children were usually no trouble: they were all the same after all. Weren’t they? There was apparently some serious confusion over this one although at first reading it seemed plain:

‘The subject is a child, known as Child E. Child E is female, eight years old, of British origin, Caucasian.’

That seemed clear: she would easily fit into the ‘Children – Under 10 years, White British girl’ category. Detective O’Leary didn’t see the problem. In fact, she felt somewhat insulted that this simple case had been given to her. She was a member of the ‘Women – Professional, 40-49 years, Irish’ category and didn’t need to be wasting her time with this kindergarten type work. She sighed and continued to read the brief.

‘Child E lives with her parents, who are married, in the family home with her younger brother. She attends full time school local to where she lives‘. So far, nothing untoward was jumping out at the detective. She scratched ‘Children – Under 10 years, Broken Home’ category from the list of options along with ‘Children – Under 10 years, Blended Family’.

‘Child E has a diagnosis of Rett syndrome‘ ‘What on earth is that?’ she wondered, flicking through to Appendix A (Rett UK, 2018) to find out more.

APPENDIX A: ‘Rett syndrome is a rare neurological disorder found predominantly in females, present from conception. It usually remains undetected until a major regression occurs between 1 and 3 years of age when previously acquired skills are lost…. People with Rett syndrome have profound and multiple physical disabilities and communication difficulties and are totally reliant on others throughout their lives‘

‘Okaaaaay’ she thought. ‘Interesting.’ The detective reached for the list of ‘Children – Disabled’ categories and glanced through them, trying to decide which would be the best fit. The sub categories were titled

• Ambulant
• Wheelchair user
• Non verbal
• Sensory
• Learning disabilities

There were also titles that made less sense to her:

• AAC user
• Apraxic
• Complex
• Hypotonic

This would not be as easy as she had thought. There were so many sub categories that this child could fit into that her head was beginning to spin. She put down the papers and got up from her desk. ‘Maybe a coffee would help’ she told herself and headed for the kitchenette.

The coffee machine spewed out an undrinkable thick brown liquid that looked and smelled like coffee but was in fact tasteless. Still, it was hot, and it would help her think of a way to resolve this issue that seemed to be growing more complicated by the minute.

Detective O’Leary returned to her desk. She picked up Appendix A and read on: ‘Children with Rett syndrome share common symptoms. It is a spectrum disorder with some children being more severely affected than others. Not every child displays every symptom but the most typical include a loss of speech, a loss of purposeful hand use, low muscle tone (hypotonia), difficulty feeding and have unusual hand movements such as clapping, wringing and mouthing’

‘Aha!’ she thought ‘Non verbal and Hypotonic!’ and ticked those categories.

Reading on, she gasped at the number of symptoms affecting this population. ‘There are often periods of distress, irritability and screaming for no obvious reason. The child may become withdrawn for a period. Seizures are common and can start at any point. Swallow may be affected requiring tube feeding. Breathing will often become irregular alternating between hyperventilation and apnoeas.’

‘Wow’ she thought.

‘If the child has started walking, their gait may become unsteady’ ‘Ambulant’ she ticked it off. She was on a roll at last! ‘The child may however never walk or may lose this skill either suddenly or over time.’ ‘Hmmm, maybe not Ambulant, maybe Wheelchair user.’

She turned back to the description of Child E. ‘Child E can walk independently although with a stiff and unsteady gait‘ ‘Yup, Ambulant’ she smiled to herself, but in the next sentence read ‘Child E requires a wheelchair for distances that are too far for her to walk since she tires easily.’

‘Oh for goodness’ sake!’ Detective O’Leary exclaimed. This was not just a case of lines blurring but of one person fitting into completely opposite categories. This would not do. She was starting to feeldistinctly uncomfortable. Categorising was important: you knew where you were when everything was classified properly. Anomalies like this one were discomfiting.

She started to feel irritated: was this child being deliberately awkward? Or were her learning difficulties so extreme that she didn’t even know what she was doing. Maybe that was it!

‘Children – Disabled, Low expectations category – that could be the answer!’ she thought. This category was one where those who couldn’t be classified elsewhere were sometimes placed. Feeling heartened, she picked up the sheaf of papers. Always one for due diligence, Detective O’Leary could not ignore the rest of the evidence that had been collated for this case.

‘Children – Disabled, Low expectations category – that could be the answer!’ she thought. This category was one where those who couldn’t be classified elsewhere were sometimes placed. Feeling heartened, she picked up the sheaf of papers. Always one for due diligence, Detective O’Leary could not ignore the rest of the evidence that had been collated for this case.

APPENDIX B: This appendix gives the views and opinions of family and friends of Child E.

‘Parents report that Child E is a sociable and popular little girl who enjoys a wide range of activities, for example going to the zoo, seeing friends, eating out, swimming, trampolining, cinema and theatre. She communicates well..‘

‘Hang on!’ thought Detective O’Leary and rummaged back through the papers to check that her memory served her correctly. ‘..the most typical include a loss of speech, a loss of purposeful hand use‘.

She was right. If this child could not speak and could not use her hands to write, type, point or use sign language, how could she possibly communicate? Were the parents living in a dream world, ignorant of the extent of their daughter’s disability? Maybe the child was not bright enough to want to communicate: she had seen it often enough where the parents were in denial and just saw the things they wanted to see. Intrigued to read more about Cloud Cuckoo Land where these parents seemed to reside, she turned back to Appendix B:

‘..using eye pointing, facial expression, some gestures and her eye gaze computer, also known as a Speech Generating Device (SGD).’

She looked at the manufacturer brochure for the eye gaze device and flicked through the pages. ‘Oh! Like the late Professor Hawking’ she exclaimed. ‘Didn’t he use something like that?’ She had always been fascinated by the way that despite the physical and mental challenges the man had faced, he still found a way to communicate with the world. ‘Communicate and more!’ she marvelled. The case was suddenly enthralling rather than frustrating. With renewed enthusiasm Detective O’Leary picked up the sheaf of papers and settled herself in her chair to read.

Rett syndrome, was, unsurprisingly, named after Dr Rett. Back in 1966 he described the condition, but it was not recognised and named as a syndrome until 1983. Even in his initial descriptions, before it was known to occur in boys too, Dr Rett observed that ‘they feel all the love given to them. They have a great sensitivity for love. I am sure of this. There are many mysteries and one of them is the girls’ eyes. I tell all the parents to look at their eyes. The eyes are talking to them. I am sure the girls understand everything but they can do nothing with the information.’

‘Wowee’ she breathed, suddenly having a completely new perspective on Child E, and by default on other people with disabilities. ‘This kid may be ‘locked in’? Her brain could be working just fine but she can’t find a way to let people know?’ This was mind-blowing stuff. It was true that the MRI and EEG results for Child E had shown no damage or irregularities.

Remembering that she was supposed to be finding a solution to this case, she wondered if there was a category for Disabled Child – Locked In. Scanning the lists, nothing popped out at her. It was at times like this that she wished there was less of a need to categorise everything so precisely. There was no way round it though. It was the done thing. It gave identity to people and objects. People felt comfortable knowing which category they fitted into, and to those around them who liked the order of it. ‘We can’t go around not having categories’ she thought. ‘Where would we be without them?’ She decided to read some of the witness statements for the case; maybe they would shed some more light on the best box to fit this awkward yet fascinating child into.

First up were the opinions of the sibling and cousins of Child E. ‘This will be telling’ smiled the Detective. ‘How can this kid interact with family members to any extent?’ She fully expected the comments to be all about Child E’s disabilities but turning over the page, she was surprised.

‘My sister is really funny and cheeky. She is clever and kind. Sometimes she sits on my things when I put them down or throws them on the floor. Her favourite animal at the zoo is the zebra but it used to be the giraffes. My favourite animal is the elephants. She gets tummy aches a lot and that makes her cry but the rest of the time she is very happy. I love my sister; she is the best sister in the world. I always wanted a sister just like he’. – Patrick aged 5.

‘My cousin really likes to watch films. She knows all the films and which bits are funny and which bits are scary and which bits are sad. She is really clever. She has lost eight teeth too. I have lost seven’. – Arlo aged 7.

‘She is cool. She makes me laugh’. Elijah aged 5

It was obvious that Child E was able to interact at some level with others. Certainly, there was no suggestion of any behavioural problems: opinion seemed to be united that she was funny and easygoing. The Detective continued down the page, moving onto opinions from peers, both adult and child:

‘She has really cool clothes. She always looks good.’ Izzy aged 8

‘She makes me feel happy. She is nice. I love her.’ Holly aged 9

‘She is smart, sensitive and funny.’ Louise aged 40

‘She is so clever.’ Daniel aged 8

‘Her jokes are really funny! Can I tell you a joke?’ Amelia aged 4

‘She is pretty and kind.’ Aimee aged 8

‘She can’t speak like we do but she looks at what she wants so it’s not a problem when we are together.” Eden aged 10

‘She has a really good sense of humour. I like her jokes.’ Daisy aged 8

‘She is cool.’ Beau aged 4

‘She is clever and awesome the way she uses her computer to talk.’ Ava aged 8

‘She is inspiring; showing that even if there is a problem you don’t have to let it hold you back.’ Mischa aged 11

‘She is amazing, inspiring.’ Laura aged 20

‘She is very clever. She seems to be good at a lot of things.’ Amelia aged 8

‘She is clever to talk using her eyes. We both like horses a lot.’ Sophia aged 6

‘She is very kind.’ Hannah aged 6

‘She doesn’t talk very much.’ George aged 5

‘I really like the way she can tell jokes using her computer: she is really funny.’ Ethan aged 8

‘She is great company.’ Hannah aged 12

‘She is beautiful. I love her bedroom!’ Joanna aged 6

‘She is really clever. I like her. Could she teach my friend who can’t talk to use that computer?’ Freddie aged 8

There was no shortage of comments from friends and peers. In terms of popularity Child E was flying! Her disabilities did not feature particularly in their comments and where they did, it was not in a negative way. But this alone did not mean that Child E was cognitively able. After all, people could be pleasant enough, popular and good natured but that did not make them smart.

Detective O’Leary rifled through the papers, looking for academic literature. The earlier papers seemed to suggest that there was a severe cognitive impairment, even stating that the stage of development for these people did not exceed eight months of age (Woodyatt & Ozanne, p 421)

She pondered this: ‘If I follow that train of thought then this job ought to be easy to complete. If I go with that assumption, then Disabled Child – Vegetative is the category for this child.’ Surely though, the physical abilities of Child E and the comments from her peers and family did not correlate with a child with the cognitive developmental age of eight months? It would be easy to go with that category, pack up the box of papers, submit her work and go home but that did not sit right with her. She felt she owed it to this kid, to all the kids in similar situations, to see this through and at least read all the evidence.

Another sludgy coffee later, she took a brisk walk around the office and went into the Ladies to splash water onto her face. Heading back to her desk, she rolled her shoulders and neck to try and loosen the muscles there, tight from sitting still working. Looking at the more recent literature, there appeared to be a shift in thinking. More recent studies were suggesting that perhaps, some people with Rett syndrome operate at a near-normal cognitive level (Ahonniska-Assa, J. et al, p43; Clarkson, T. et al). ‘Well!’ she breathed. ‘That seems to tie in better with the description of Child E.’

Despite all this research into the child and into the condition however, she did not feel any closer to finalising this case. ‘All I am doing is figuring out which categories she does NOT fit into’ she thought hopelessly. ‘Or identifying far too many categories which might work, but that’s just impossible! The Department of Categorisation requires a specific category to be named for each case, perhaps with reference to a few other categories but certainly not this many!’

Scanning through the final pages of evidence, that of the medical and education professionals who worked with Child E, words such as ‘delightful’, ‘popular’, ‘happy’ and ‘engaged’ were used over and over. General opinion was that the little girl was a valued member of her school and community, taking part in all lessons and activities, and particularly keen on literacy and books. The difficulty in measuring progress and ability were noted although there was very much a feeling that the professionals believed in this girl. ‘Why does it always come back to measures and tests? It’s just not fair.’ she thought, frustrated. She had seen the amount of observations and curriculum assessments that her niece and nephew had been exposed to, and they had no additional needs!

The medical reports were standard: Child E seemed to be one of the luckier ones in that her physical abilities and condition had not changed particularly in recent years. She had required modifications such as the availability of a wheelchair and orthotic footwear in this time, but Detective O’Leary got the impression that this was simply because Child E was getting physically bigger and therefore actions were becoming more tiring.

As she pulled all the information together, one previously unnoticed page slid out and onto the floor. She picked it up, expecting it to be more medical paperwork. Taking a closer look, she realised that it was the statement given by the mother of Child E. Written completely from the heart, it blindsided Detective O’Leary, unused as she was to reading evidence with such emotional depth.

‘Two lines.
Is this what the slog has been building up to? Two little lines?
The pain, the all-encompassing pain of every conceivable type.
Emotional, heart breaking pain.
Physical pain both on the inside and the outside.
The pain of deep envy.
The pain of self-imposed solitude.
The pain of a fake smile.
But now, two lines.
It’s a Yes.
Yes!
Two lines!
Two lines and a stomach flipping, fizzing kind of excitement.
Two blue lines holding all the promise and joy in the world.
Two little blue lines that make all the pain and struggling fade from memory and totally worth it.
The promise of a new life.’

Detective O’Leary felt tears well in her eyes from the sheer emotion portrayed by the few lines of text. Child E was SO WANTED.

‘Life was not supposed to be this way‘ she read. ‘After a long-awaited pregnancy, our baby daughter was perfect the minute we saw her. Everyone commented on how beautiful and well behaved she was. We were so happy. We had everything we wanted.

As time went on however, we noticed some slight differences in comparison to her peers. These differences became more marked and by the time her baby brother had come along, we were deep into the relentless cycle of hospital visits, physiotherapy appointments, medical tests, stress and worry. When we received the diagnosis of Rett syndrome, our hearts broke instantly into pieces and our lives fell apart. Everything we had hoped for and imagined for our child was gone. We had to face a completely different future for her, for us and for her brother. Nobody knew or could tell us what to expect. Rett syndrome has no typical chartable progression: it is a series of twists and turns, blind corners and holes in the road when you least expect them. The parents we were died that day and we had to become different people.

Our daughter hadn’t changed though. She was the same little girl she had been when she woke up that morning. Her brother hadn’t changed either. We just had to look at things differently. With a deep breath (many, over the years since), we pulled ourselves together and faced the world. We might not be able to control this wretched condition or what it will continue to take from our girl, but we can make sure she plays an equal part in our family, that she will learn to read and spell. We will make sure that she and the world learn to communicate with one another. She has a lot to say.

She may have Rett syndrome, but first and foremost she is a little girl: OUR girl. She is funny and kind and gentle. She is opinionated, she is popular, she is determined beyond words. She is everything we could have hoped for, and more. We wish Rett syndrome hadn’t joined our family, uninvited, but it is just a part of who she is, and who we are. It is not the whole.’

‘That’s it’ she thought, noticing that she had come to the end of the page, and to the end of the evidence that had been made available to her. ‘There’s no more to read.’ She certainly felt as though she had a decent grounding in what Rett syndrome was compared to the start of this case when she had never even heard of it, and certainly would have lumped it in with other disabilities. She also felt that she had some insight into this little girl that she would never meet. In her mind’s eye she imagined a pretty, happy child, surrounded by family, friends and love. She didn’t see the disabilities at first imagined glance; just the child

‘How things can change’ she mused. Before this case she might, no, would, have categorised the girl by her disabilities: by the things she couldn’t do, or maybe by her family situation. Now, she saw the girl as an individual with a myriad of talents, characteristics and features. She suddenly did not feel such a need to fit the child into a category for her to have an identity. She felt more relaxed about such things. This did not help with the immediate task of specifying a category and closing the case however. Drawing upon her years of experience, she jotted down a few key words.

‘O’Leary!’ barked her superior, interrupting her train of thought. ‘My office, now! I need a progress briefing on this categorisation case.’ He turned and marched back into his office leaving the door open for her to follow.

Detective O’Leary gathered the sheaf of papers together. Mentally, she gathered her thoughts into something close to organised. She needed to give an answer and she needed to do it now. She knew what she would say.

Taking a deep breath, she picked up the papers, rose, and walked into the office to report back to her boss.

References

• Ahonniska-Assa, J; Polack, O; Saraf, E; Wine, J; Silberg, T; Nissenkorn, A; Ben-Zeev, B. (2017) Assessing cognitive functioning in females with Rett syndrome by eye tracking methodology. European Journal of Paediatric Neurology, 22, pp. 39-45.
• Barlosky, M. (2005) Educational Leadership in Pluralistic Settings: The Imagination of the Other and the Administration of Experience. International Studies in Educational Administration, 33 (1), pp. 39-51.
• Clarkson, T; LeBlanc, J; DeGregorio, G; Vogel-Farley, V; Barnes, K; Kaufmann, WE; Nelson, CA (2017) Adapting the Mullen Scales of Early Learning for a Standardised Measure of Development in Children with Rett syndrome. American Association on Intellectual and Developmental Disabilities, 55 (6), pp. 419-431.
• Crisp, R (2007) Each unique being has many labels. Times Higher Education Supplement [Online], 9 February. Available from http://www.timeshighereducation.co.uk [Accessed 15 April 2018]
• Gergen, Kenneth. J. (1999) An Invitation To Social Constructivism. 1 st ed. London: SAGE Publications Ltd.
• Loffler, G and Gordon, G (2018) Clinicians make mistakes about intellectual impairments – as new Rett syndrome findings show. The Conversation [Online], 17 April. Available from https://theconversation.com [Accessed 18 April 2018].
• • What is Rett syndrome? [Online], Available from: http://www.rettuk.org [Accessed 21 April 2018]
• • Woodyatt, G. C. and Ozanne, A. E (1993) A longitudinal study of cognitive skills and communication behaviours in children with Rett syndrome. Journal of Intellectual Disability Research, 37, pp. 419-435.