Anna & Alec’s story

Photo of Anna smiling holding her son Jamie and standing beside her partner Mark who is holding Alec.

It’s fair to say September 2012 was a bit of a game-changer for me and my partner, Mark. At the beginning of that month our first child, Alec, was born. By the end of the month he had been formally diagnosed with cerebral palsy, following a difficult birth and resuscitation, one brutal week in the neonatal intensive care unit, and an MRI scan.

While a team of remarkable, unforgettable nurses and doctors held all the fraying edges of Alec’s – and our – lives together, we were at some point advised that a section of Alec’s brain was “gone”, the result of oxygen starvation in the run-up to his birth. His mobility and speech were certain to be affected. “This wasn’t what you signed up for”, one doctor said as she hugged me in a hospital corridor in the middle of the night.

Over the years it became apparent to us that Alec’s cerebral palsy was severe. Physically, his CP is rated at the highest level; he has no independent mobility or functional use of his hands and requires total support for all aspects of day-to-day life. He is also unable to speak.

But the original MRI scans taken when Alec was just a few weeks old showed minimal damage to the cognitive part of his brain. As a baby and toddler it was clear he was bright and understood language. Unable to play or move on his own he demanded our constant input and stimulation. “He’s all there upstairs” intoned the same straight-talking consultant that had dished out the 3am hug.

By age three Alec was provided with a high-tech “eye gaze” communication aid that he now uses constantly. Special cameras in this tablet-like device track his eye movements. Alec navigates through “grids” of hundreds of words and icons, using his eyes to make his selection. The computer then repeats his chosen words out loud. It’s a very long, slow process to achieve a good level of communication using these complex devices, but Alec is making some good progress.

The focus of this article is how Alec’s disability has impacted on his education. For Alec, most of his time at nursery, and all of his primary schooling, has taken place in mainstream settings and we found accessing mainstream primary school reasonably uncomplicated.

One or two professionals that worked with Alec were noticeably ambivalent and had clearly still not fully signed-up to the Scottish legislation dating back to 2000 that there be a “presumption of mainstream” for children with additional support needs. But most were very much in favour and, reflecting on the last few years, the first thing to say about Alec’s education is just how positive mainstream schooling has been for him.

From the get-go, the staff at the local primary school that Alec attends along with his younger brother have been phenomenal. Their positive commitment to including Alec in all aspects of school life is clear. They are allies and advocates. They agonise over every step of his education and are desperate to get it right. Children in Alec’s class and throughout the school are instinctively accepting. They have picked up how to communicate with him and how to include him in games. They know how his eye gaze computer works. He is just another part of their day-to-day world and they don’t question his being at a mainstream school. Only adults do that.

The second reflection I would make about Alec’s education is the rapid realisation on our part after he started primary school that educating a child who can’t write, can’t speak, and whose principal means of communication is via a high-tech computer he is still learning how to work properly is far from a straightforward prospect.

Almost every aspect of schoolwork has to be tackled differently when done through the medium of a communication aid. And because the curriculum and Alec’s ability constantly evolves, in order to keep teaching him well school staff must continually research and refresh their approaches, differentiate tasks and regularly get support from a variety of experts, as well as drawing on their own rich experience as educators.

The reality is that Alec, and many other disabled children, do require “more”. They need specialist support and (often expensive) equipment, and many extra hours of effort on the part of educators if they are to be given an equal shot at achieving to the best of their ability.

Alec has been fortunate, so far. His school is supportive, senior staff and teachers are always ready to go the extra mile, his two Support for Learning Assistants happen to be vastly over qualified for their roles and able to get across all the technology and program his eye gaze computer at the drop of a hat.

But I find it extremely unsettling that Alec’s education feels precarious. I would argue that for disabled children in Scotland, the extra support, equipment and effort required to give them a good education feels far from guaranteed. Alec is treading an educational tightrope that is vastly different to the easy pathways his younger brother strolls along.

Photo of Anna smiling on a tree branch with Alec sitting on her knee and Jamie sitting beside her.

Money, and the lack of it, plays a huge role in the fragility of Alec’s educational potential. Cutting back and doing more with less is a way of life now in councils and the NHS. Then throw into the mix that we live in a society that calculates almost everything in relation to its economic viability and value and where negative attitudes towards disabled people still exist.

In other words, there are a seam of people out there who quite like the theory of inclusivity, but who notice that achieving it depletes the limited resources available and who continue to have the cultural permission to question whether disabled people are worth the (often significant) sums invested in them. The bigger picture of inclusion, human rights and equality becomes totally lost in the more immediate fog of not overspending on a budget.

Very little is provided to us or Alec’s school without it being queried, cross-examined and double-checked to the point where this is seen as completely normal by all involved.

This has the consequence of forcing more responsibility downward onto individuals – parents and school staff – to play a critical role in advocating for and securing the necessary support and equipment for disabled children. If you don’t happen to have the ability to advocate for your child amongst a sea of middle-class professionals, or don’t have a local ally who is willing to go the extra mile, then you have a problem.

This way of operating – which is a way of life for all parents of disabled children – is draining and destabilising. It is creating a survival of the fittest situation that exacerbates all the growing inequalities already present in our society and ultimately fuels negative attitudes about disabled people and the concept of inclusion.

We need to keep at the forefront of our minds that the money we are spending on educating disabled children ain’t buying them clarinet lessons. It is going on practical tools, expensive though they may be, that fulfil basic purposes – a computer to communicate with, seating to help improve posture and reduce pain, assistants who can aid participation. They are the material mechanisms that allow equality of educational opportunity with non-disabled children.

The responsibility for ensuring that disabled children get the proper education they deserve in mainstream settings needs to pe pushed back up the line, to a level where additional financial support can be unlocked and spread across all our communities, so that all disabled children can be guaranteed a school experience that will allow them to achieve of their best.

Just like all the other times in history where we have taken a step towards equality of some kind or another, becoming a fully inclusive society is hard. It will require money on the table, changes for non-disabled people, and sometimes significant alterations to our systems and structures.

I have never forgotten that hug I received from the doctor in the hospital corridor after Alec was born; a simple act of kindness and comfort from someone who truly understood what we were going through. Now with the benefit of hindsight, I reflect again on what it was that “I didn’t sign up for”. I think about the fact we have two children, one disabled, one non-disabled, but both happy and fun-loving and successful and perfect in their own way. What I did not sign up for was the pervasive inequalities in our systems and structures that mean they do not always have the same opportunities available to them.

Both our children are equally worthy of getting a guaranteed, proper education together in their own community. That shouldn’t be predicated on whether someone has the middle-class credentials to fight for it, or the good fortune to find an ally who can secure it for them. It should just be. I believe that if we come together collectively, we can make this happen.

Published by a24scotland

A24 is a new organisation aiming to support, promote and secure inclusive education for all children and young people in Scotland as set out in Article 24 of the United Nations Convention on the Rights of Persons with Disabilities. A24 are a group of parents of disabled children, self-advocates, researchers, academics, and practitioners.

One thought on “Anna & Alec’s story

  1. Anna as a HTeacher I had a thriving Learning Support dept within the primary school but money for staff and technical support was always tightThere was sometimes some parents who didn’t understand the bias towards support for learning and sadly one or 2 staff.That was20 years ago I had hoped things had improved.My experience was this” bias” was beneficial to everyone.

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