Disorders, Difficulties and words that start with Dys (Condensed Version))

What a month it has been! Two weeks ago my daughter Fenna was notified that she has achieved a 2:1 degree in Psychology. The next day she learned that she has also been successful in her first ever “proper” job application. She aced her very first interview and will start her “dream job” in a few weeks time, working for an innovative children’s charity, and further studying to be a child psychotherapist.

Fenna has Dyslexia, Dyspraxia and Attention Deficit Disorder. She did not fit in to the conventional education system, and acquired a number of further, informal, labels during her school career.
You can read a fuller version of Fenna’s educational experience here

Yesterday I was a guest speaker at a conference in Birmingham, organised jointly by the CoEd Foundation  and Birmingham Governors’ Network. Its subject – Compassion in Education – is close to my heart for many reasons. Fenna is just one of those.

I have worked with people affected by neurodiversity for many years, initially through a charity and most recently via my own enterprise, Dystinctive Learning. I have supported children, parents, adults and young people, campaigned, and trained professionals. Even when this has not been my main career focus, it has never receded far into the background. It is not possible to work with groups, particularly vulnerable ones, without encountering unconventional learners, who often don’t understand why their lives have been so fraught with challenges.

My own experience of education was a fairly miserable one. In the 1960s Specific Learning Differences were still largely unrecognised, and my inability to fit in, keep up or achieve what was expected of me was a much-punished mystery. I was 42 when I received a formal diagnosis of dyslexia, and already working in the field. My advanced literacy skills had masked the condition most effectively. Further diagnoses of dyspraxia and ADD came in my early fifties.

Fenna

As a small child, Fenna was confident, creative and endlessly curious. Soon after she started school, all that began to change. Her self-esteem plummeted, replaced by growing anxiety. She was privately assessed for dyslexia at age eight, and home-educated for a while. Together we explored the wonderful way her brain worked. We devised creative strategies to help her learn and retain information, and as she discovered more about the way she learned, she grew in confidence and ability.

Secondary school was challenging for Fenna. Understanding how she learned made the inaccessibility of most of her lessons more frustrating and there were confrontations that earned her a reputation as a trouble-maker with some staff.

As GCSEs loomed, her teachers’ attempts to motivate her to study in ways that were not congruent with her alternative styles of learning piled on pressure so counter-productive to the desired outcome that, from the outside, it looked very much like relentless bullying.

I have sympathy for her teaching staff. The pressure they were under to force results required by the school to achieve its next Ofsted status could not help but affect their engagement with their pupils. They did not understand Fenna’s needs because they had not received adequate training on the complex spectrum of Specific Learning Difficulties. It had probably never occurred to them that this label for a collection of “disorders” modelled by earlier low-achieving pupils  such as Albert Einstein, Agatha Christie, Thomas Edison and Erin Brokovich, is insulting, disempowering and not very accurate.

Perhaps if they had learned, as a priority, that at least ten percent of the young people they would teach would be dyslexic, with talents and abilities that, if identified and nurtured, could far outweigh their (generally very manageable) challenges, they would have given this some thought. Perhaps if they had been encouraged to refer to diverse ways of learning and responding as variations, rather than disorders, Specific Learning Differences, not Difficulties, they might have welcomed the exciting challenge of creatively engaging and inspiring a child who did not fit the same old, same old profile. Perhaps if compassion, along with open-minded curiosity and good old-fashioned, all-round respect were at the top of the curriculum in our poor, overwhelmed and broken education system, its servants would be more fulfilled. And my daughter and the countless other young people who don’t fit its narrow perimeters would not have grown up being told, explicitly and implicitly, that they are “less than” their more conventional peers, and will never be normal, valuable or successful in society’s eyes, and internalised this as truth.


The Collins dictionary defines dys as a prefix meaning “diseased, abnormal or faulty”
. Every time this term is applied to a human being, they take it on a little more.
A heavy load to carry throughout life.

 

 

The Equality Act 2010, confirming dyslexia as a disability, acknowledges that when a dyslexic individual is placed under stress, they may lose their ability to manage their “impairment”. Exams are the most stressful thing in the world for many dyslexic students. At the time when they most need to be clear, focused and effective, they are least likely to be able to achieve this state.

Fenna and I had developed strategies to make her GCSE period as stress-free as possible. But when my mother had a major stroke just before they began, I had no choice but to stay with her, 300 miles from home, leaving Fenna, for the entire exam period, with her father, who did not live with us and, while invaluable on a practical level, was not equipped for the stress-limitation I had planned.

Despite these adverse circumstances, Fenna achieved 12 GCEs, all grade C. Next came the battle to be allowed to do the A levels she had applied for. The director of the local college harshly informed her that her grades were not good enough for A levels. He recommended a BTEC diploma in art and design, which held no interest for her. Her dream had always been to be a therapist, and she needed Psychology A level to achieve this. We both argued her case, and the director finally conceded, making it very clear that he expected her to fail.

Instead of being crushed by her new head’s open lack of faith in her, Fenna was determined she would show him she could do it. She gained a B in Psychology A level, an A in World Development AS, plus two respectable arts A levels to make up the grades required to study Psychology at university. Her Psychology and World Development tutors, two young women who made every effort to understand Fenna’s learning styles and support her accordingly, were wonderful examples of what can be achieved with compassionate, out-of-the-box teaching.

Her chosen place of higher education was different matter, and a shock. Support for Fenna’s specific needs was non-existent in a system deeply discriminatory to anyone who did not learn conventionally. Lectures were structured in a way that made them impossible for her to process. Most of her tutors seemed to lack any awareness, interest or compassion, dismissing her pleas for help by referring her to a website she could not understand. The stress of this experience took its toll and she had to repeat her second year.

I urged her to make a formal complaint but she didn’t want to be more unpopular than she felt she already was. Fortunately a study skills tutor, funded by Disabled Student’s Allowance, and another at home who is a good friend and colleague of mine, gave Fenna the support to get her through. That university’s entire system  needs to be transformed, to provide an inclusive learning experience for neurodiverse students who are paying an extraordinary sum for a sub-standard service. While some higher education establishments offer excellent support, sadly Fenna’s was not alone in its negligence, as this report shows.

It was only in her final year, when she was finally allowed to study subjects that interested and engaged her, that Fenna began to enjoy her studies. This was reflected in her dissertation grade;
a First for a heartfelt and excellent piece of research on the concept of home for Somali refugees settling in the UK.

And now here we are. Another new stage. Last week Fenna and I celebrated the end of her formal education, an incredible relief for both of us!

I have yet to contact the director of the college who told this talented young woman she could not achieve her dream, but I will. If Fenna had been crushed by his short-sightedness instead of determined to prove him wrong, not only might she now be living a frustrated life of limitation and lost hope, but the world would lack a potentially brilliant professional who will impact the lives of children in need of someone just like her.

As I celebrate her achievements, I cannot help but think of all the children and young people, full of potential, talent and budding dreams, who are set to be failed by an education system that does not see them. The request to speak at yesterday’s conference was timely, and being surrounded by educators and governors committed to making our education system more compassionate and less standards-driven most inspiring. It reminded me that there is still a battle to be won, not with vitriol and weapons, but with compassion, liberally peppered with righteous anger and determination.

Too many people of all ages are still being told, and internalising as fact, that they are little more than a collection of disorders, difficulties and words that start with dys (or dis). Allow me to turn the tables for a moment and apply some dys (and dis) words to a dysfunctional society and education system whose dystopian leaders cannot be allowed to carry on discriminating against complex, vulnerable and often brilliant children, young people and adults and dismissing them because their wonderful gifts and qualities do not fit the narrow limitations it deems valuable. Such people end up disheartened and dispirited. That is not acceptable. It is a disgrace.

My daughter has succeeded where she was predicted to fail. Nothing has been easy but many of the gifts associated with neurodiversity (and generally overlooked in favour of a focus on the negative) have served her well. She is happy for me to share her story in the hope that it will inspire other young people to persevere, and professionals to show compassion and respect to everyone, no matter how they learn.

 

 

 

By | 2017-09-27T00:08:58+00:00 July 11th, 2017|Dystinctive Learning, Positively Mental, Woman Undiluted|

About the Author:

I am 57, mother of three adult children, a transpersonal therapist, writer and group facilitator living in South West England. I have had my share of (ultimately empowering) challenges, including neurodiversity and mental health crises, and am currently learning to embrace the dubious title “Older Woman”- and make it wonderful!