#SendWish2019 Hope for #SystemicInclusion

I’m going to tell you ‘A Tale of Two SENCOs’…..

Tale One: fighting for legally compliant inclusion

For the last 3 months I have been privately ranting about an experience I had in a school, where I was accompanying a friend to a meeting with a SENCO regarding her child’s inability to hand write to the same volume and accuracy of his peers.  My friend had called the meeting after the school had unhelpfully asked her what she was going to do about it.

Said child has autism and developmental coordination disorder (DCD).  He isn’t writing less because he is “defiant”, despite this being the exact word used to describe him in the meeting.  He writes less than his peers because he has less neurological activity directing his fine motor control and it is literally harder for him to write.

I explained this to the trained professional.  I also explained that in an employment context, this functional problem would confer an offer of speech-to-text software, keyboard use or a scribe pen, rather than handwriting.  I did not mention that accusations of willful poor function would be considered discrimination under the Equality Act, much as I wanted to.

I accompanied my friend because she was worried she would become upset and unable to articulately advocate for her child.  I realise I am the schools worse nightmare as a chaperone and so I limited my intervention to securing viable, reasonable adjustments for the child and let a lot of things slide, as I didn’t feel they would help the child and mother in question.  It was not my job to school this professional, though one of our basic 1 hour lunch and learns would have transformed her approach with some basic knowledge of the law and autism.

Here are the reasonable adjustments I secured:

  • He is able to use a keyboard in class writing activity
  • He is able to ask to leave a class 5 mins early so that he has time to get to his next lesson and can walk through a quiet corridor rather than the hustle and bustle of the whole school transitioning
  • He is able to wear his tie on the second button down as doing his top button up make him feel physically uncomfortable

Here is what I felt I had to let slide (but am now ranting about on our blog!):

Firstly, regarding the tie.  The SENCO actually said these words.

“He has to learn to fit in.  What if he has a high powered job one day and needs to wear a tie?”

Is it the job of schools to train people for middle management?  Are those the only jobs going?  Even if they are, the legal obligations under the Equality Act are for the organisation to make adjustments, not the individual.  If you had a pupil or employee who was in a wheelchair, would you ask them to sit in a regular chair at their desk so that they would ‘fit in’ with the décor, even if it made them physically uncomfortable?  Of course not.  The sentence uttered by this individual, a supposed expert in her field, showed that she understood nothing about the law, autism or inclusion.  The tie would only be enforceable by law if it was part of the functional job performance.  I am struggling to think of a job where a tie is a requirement.  The only one I’ve come up with in three months is a jazz dancer where the choregraphy required you to be led across a stage by your tie.  And further, I can think of some very high powered people who do not wear ties. Mark Zuckerberg? Angela Merkel?

I was waiting, just waiting for her to say “the other children will want to know why he is not following the rules”.  She didn’t say it.  She took some significant pauses and I wonder if she was thinking it and choosing not to come out with it.  If I hadn’t been there, I’ll bet you a million quid that she would have said it to my friend.

My answer would have been: we are robbing the other children of a chance to learn empathy when we make individuals with disabilities choose fitting in over physical comfort and ability to concentrate. We cannot expect to have an inclusive workforce and community if our schools do not inculcate understanding and inclusion.  The difference between equity and equality is clear – if we treat people exactly the same some will be disadvantaged through no fault of their own.  Making adjustments is a legal requirement, children need to be prepared for that throughout their lives.

Secondly regarding the keyboard.  The SENCO actually said these words.

“Well we do have equipment and assistive technology for children with disabilities but he’s never asked to use it.”

Blaming the child for not knowing how to solve his own problem aged 13 and accusing him of defiance when he expressed discomfort!!! Why aren’t all children with autism and DCD routinely offered a chance to play with the assistive tech on offer to see that works for them?

Invisible disabilities are known to be subject to more prejudice and discrimination in a very specific way – we aren’t believed.  The use of words like “defiant” to describe a 13 year old child with DCD writing less than his peers in a classroom – ALL 13 year olds can be defiant in attitude, but the cause of that expression is a genuine tiredness.  Would we say that a child who was hard of hearing was “defiant” when they expressed frustration at not hearing the instructions for an activity?  Or would we take them quietly to one side and work out the best seating location in the room for their needs? One hopes the latter.  One is not sure, the more one sees of what passes for disability experts in schools.

And the worst bit of all of this for society is the waste of human potential. Said child has an IQ of 132.  He is literally a genius.  Yet he is getting average and below average grades right now in that school.  He was in a specialist autism school for one year, in which he was placed in classes with children 2 years older than him because he is so bright.  In mainstream, he is barely hanging on.  His life chances of inclusion are dripping away, because his self-esteem and frustration with life will be so embittered by this process of having every slight difference fought over, defended, petty meetings to discuss ties and keyboards.  He regularly takes days off to recover – this is framed as a truancy problem.  He is being pathologised and demonised for his basic physical differences in sensory acuity, instead of being supported to find his vocational autistic specialism that could contribute to the world.  The world needs our brightest humans focused on the many problems we face as species, not languishing in detention for choosing to prioritise their concentration over wearing a tie. The waste is literally criminal.

Tale Two: systemic inclusion

So because I am by nature an optimist, I also notice and rant about stories where things have worked out well.  I have a different friend, living not near to me but to whom I have provided behind the scenes advice to her regarding her daughter for many years now.  Her daughter also has autism.  Her most recent two interactions with the SENCO are as follows:

Firstly, a call to my friend to share observations that the child is having difficulty joining in with class activities on Wednesdays (note the lack of negative framing such as ‘defiant’ here).  The SENCO wondered if this was due to her anxiety levels being heightened on Wednesdays due to team sports in the afternoon (note the seeking of a viable explanation for behaviour).  Further, the SENCO wondered if the child might like to do an alternative physical activity as joining in with team sports wasn’t a necessity, any form of exercise would do (note meeting the needs of the child without fixation on ‘joining in’).  This shows excellent insight into typical autistic difficulties and is a beautiful example of a proactive, solution-focused, inclusive approach that places the wellbeing of the child first.  My friend replied that the child might have some ideas on this herself, and the SENCO replied “of course, how silly of us not to ask her first”.  All relationships in tact, no one fighting for basic empathy, child accommodated within the recommendations of the law.

Secondly, a residential trip is planned for the child’s year group.  The SENCO arranges for four autistic children (none of whom have EHCPs, incidentally) in the year to have an advance trip to the location to see where they will be sleeping and to be talked through all the activities in advance.  A chance to ask questions and be reassured about how to manage any overwhelm etc.

Those of you with autistic children will be weeping at this point – the beauty of how easily these adjustments were made. The school is a shining example of systemic inclusion – problems are dealt with at physical and emotional source, not behavioural symptom, the staff are prepared to ask questions and assume the best intentions from parents and children, difficulties are pre-empted with creative, empathetic activities that cost nothing.

#FlipTheNarrative

As funds have been cut and every little accommodation is viewed as a drain on resources, it is insane the amount of fight required for what would be basic adjustments in a workplace.  Fighting is exhausting for whole families, especially where parents are also neurodiverse. It would be easy to think that mainstream schools are not set up to cope with special needs, but the battle lines exist everywhere.  A third good friend had to take her son out of his special education school for 2 weeks just to protect his health whilst geting agreement on how to report his seizures – the school weren’t reporting them at all and it was having an impact on his levels of prescribed medication, leading to more seizures. The neurologists wouldn’t up the dose as he was growing as there was no evidence of increased seizures.

My third friend has let so much go because she had to pick the battles and manage the stress, prioritising his physical health and safety at the expense of other adjustments that would improve his verbal, fine motor and expressive abilities.  Yet it is these latter needs that will define his life chances, his ability to join in and find a place in the world where he experiences community, value and identity.

Co-production is a box ticking exercise that fails to recognise the parents or child’s expertise. It needs to be challenged and changed. Inclusivity is not a simple cry for more funding, it needs a culture and attitude adjustment, a belief that team working is effective and an assumption of competence is the foundation.  We need to flip the narrative across the board.

Deliberate inclusion in the workplace

What I find interesting as an Occupational Psychologist as opposed to an educationalist, is how behind the curve many schools are currently.  I work with over 500 businesses a year and in the workplace, cognitive diversity and disability inclusion are becoming mainstream.  Adjustments are not seen as draining concessions that make other employees wonder about fairness, but opportunities to learn how to facilitate productivity and drive talent.  The world of work is becoming more dynamic, more nuanced and less institutionalised.  I hear more and more anecdotal evidence of deliberate inclusion – call centres recruiting visually impaired people because of their enhanced auditory acuity, neurodiverse people recruited for unusual thinking and talent.  It’s a step in the right direction towards systemic inclusion and the workplaces are ahead of many schools here.  And I don’t just mean fancy tech companies, we work with major banking groups, government departments, big organisations with rigid processes, yet all of whom handle their legal responsibilities with enthusiasm.

Assistive technology has progressed so much in the last decade that many in the field believe there will be very few disabling conditions that prevent engagement in the workplace, those affected need to build these adjustments into their repertoire from an early age.  It is cheaper and easier to accommodate now than ever before, many specialist software applications now come as standard.  The narrative in many workplaces has flipped – the conversations I am having with the 500-1000 employers we work with annually is about how to include, not whether we can afford it, not whether it would be better for the employee to try harder.  I was genuinely aghast in tale one, I simply don’t hear outdated views like that in workplaces anymore.  And I’ve been in this business for nearly 20 years – I used to hear them but they are no longer normal.

Fitting in is less important that finding your way.  Not all children will be generalists, trying to make them so is wasteful of their talents at best and traumatising to their budding psyches at worst. A culture of targets has created a mindset where anyone who won’t contribute to the English Maths or Science results is a drain, and forcing them into those boxes is the solution.  Parent blaming by schools needs to stop and battle lines erased in the interest of young people engaging and succeeding. Time to bring in flexibility, enthusiasm and hope, time to flip the narrative to talent advantage and how to include, not how to control.

More of Tale Two please, that’s my #SENDWISH for 2019

 

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