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.

A special school?

Photo of a Small child with a large school bag running away from the camera towards a door at the end of a school corridor.

While watching A Special School a documentary following pupils and teachers in Britain’s biggest special school I wanted to tell everyone I knew to watch it. My initial reaction was to tell people so they could meet the children. The characters; the cheese eater, the teller of dirty jokes, the musician. Them all. The children are everything. 

But the more thought I give to the situation the more I hesitate to tell people about it. The thing is I don’t agree with the setup of a super special school because it fails those children. Yes it meets their rights to an education but it falls short of the right to an inclusive education.

Don’t get me wrong the school has the best facilities. I can understand why any parent would want their child to go there and access exactly what their child needs. The staff are brilliant. They ‘get it’. The entire ethos to focus on what the children can do and not what they can’t is exactly my feeling for my own son.

So then why wouldn’t I want to send my son there? There are warning bells when they say the children need a physical activity first thing to get them ready to learn. I have nothing against using up energy in order to settle active children but the reason? Some of them have been sitting in a taxi for an hour just to get there. For a start that means each day they spend two hours in isolation in the back of a taxi. It also means that most of their week is spent an hour away from the community they live in. Their communities don’t have an opportunity to get to know these children and they don’t learn to value them as contributors to society. 

That takes us to the cliff edge. One of the teachers admitted that despite everything they do to help realise potential, once the children leave the protection of the school they often fall off a cliff edge. They are not known in their own communities. They don’t have friends there. They can’t get jobs.

While at school these children most often dream of having their own front door and a job. Just like everyone else they need a purpose in life but I worry that the dreams are already limited. We often dream for our son. Will he be a tech wizard? He’s only five and is already proficient at operating a computer using only his eyes. Will he be flying helicopters? He sits in his wheelchair and points them out to us in the sky. 

Right from the start of my journey with my son I’ve said there are people who ‘get it’ and people who don’t. Usually the reason people have got it is they know someone with additional needs. They have a family member who has down syndrome or they’ve worked with someone with cerebral palsy. Without that exposure how can we expect people to understand and not be scared. I’m sure I was in the beginning. 

On the programme one parent had fought hard to get her daughter into this Special School. She had a tear in her eye watching the school’s nativity. Finally she’d found somewhere that her daughter fitted in. One of the problems she cited with the previous school was that the other children struggled with her daughter. So rather than teach these children from early on about coping strategies and ways to help this girl instead they removed her so that they could all get on with living their lives oblivious to the ways their school doesn’t welcome everyone. Where does that leave any of them when she leaves school and returns to that community looking for work and connection?

One classroom in the school had eight autistic boys. The teacher explained that there were four teachers in order to cope with ‘the domino effect’. If one gets distressed or upset it most likely would affect others in some way and so the entire classroom would break down. I know that it’s good to know people who are the same and to see others with similar diagnoses (Crip Camp on Netflix is a perfect example of how well that can work) but it surely doesn’t make sense to lump everyone with the same condition together. 

I’d love for my son to meet other eye gaze users and have an opportunity to communicate with them but for the everyday and in order to learn he really needs someone who’s not using AAC to model for him and to interpret. My favourite photo from school is his new friend holding up his yes/no cards for him to choose. She was asking him about weird concoctions for a picnic they were planning. He had the ultimate say and therefore some power in that relationship. 

It’s not an opportunity for her to learn from him or for him to learn from her but for them both to learn together. I’m well aware that the early years are easier and may get harder as he moves up the school but we need to push through and keep hanging onto children’s acceptance despite our own adult discomfort. The more we and our communities learn about and accept these children the less likely they are to face a cliff edge. 

I wish every child could attend a school as special as A Special School where the can do attitude goes along with the creativity to adapt the resources for every child no matter their needs. A place for all children together to be a part of their own communities where they will learn and be valued.

Inclusive education: a human right?

Illustration by Alex Leonard for the Children & Young People's Commissioner Scotland based on Article 1 of the UN Convention on the Rights of the Child showing a group of children holding up a sign that reads "All children have rights"

The most fundamental of rights is the right to possess rights (Freeman). 

Human rights gained international focus following the second World War. A state of ‘rightlessness’ had been created for those with ‘undesirable’ characteristics (Hannah Arendt wrote about this in her book “The Origins of Totalitarianism”). Disabled people were considered useless and their rights were removed. In the shadow of this period, a lot of progress has been made to articulate and defend the rights of every person. International treaties, conventions, and committees, national laws, and specialist courts have all been developed to work towards a world where each person’s dignity and value is assured.

Children, due to their natural vulnerability, have more rights which the state should protect. The United Nations Convention on the Rights of the Child (UNCRC) is divided into ideas which promote the protection, the provision and the participation rights of children. In concept at least, children have all the rights of adults and additionally the provisions of the UNCRC. All children have the right to an education, to safety (including at school), and to self-expression. All children should have their best interests considered when decisions are made concerning them.

Disabled children are among ‘all children’. They do not have fundamentally different rights and needs to their non-disabled peers. 

Twenty years after the UNCRC, the United Nations Convention on the Rights of Persons with Disabilities was published, in recognition of a persistently unequal society for disabled people. Disabled children now have the right to be educated in an inclusive education system. Disabled adults too have the right to access the lifelong learning and professional development of their non-disabled peers.

The wording is clear. Segregation based on impairment or disability is not in the best interest of anyone. 

Additional Support for Learning Review

Photo of a hand holding a pen writing in a spiral bound notebook with a cup and pair of glasses in the foreground.

In 2019 Angela Morgan carried out a review of additional support for learning (ASL) in Scotland. The report on her findings, ‘Support for Learning: All our children and All their potential’, was published earlier this year. This week the Scottish Government confirmed that it has accepted the majority of its recommendations and has published an action plan.

It’s inclusion, Angela but not as we know it.

Of course, in reading the ‘All Our Children’ report on additional support for learning we headed straight to its section labelled Mainstreaming and Inclusion. 

As excited interested readers we wanted to know the answers to a couple of questions. Would the report align with our vision of working to recognise, to realise and to extend the rights of children and young people with disabilities to inclusive education?  Might the report show that others in Scottish education share our “passion for ensuring all children and young people and schools benefit from learning together with peers in inclusive comprehensive schools that meet their needs”. 

Sadly, dear reader, the answers were no and no.

The section Theme 2: Mainstreaming and Inclusion starts with a misrepresentation.  

“At political, policy and strategic levels the principles of Inclusion and of the Presumption of Mainstreaming in education are widely and strongly supported.”

Were that true there would be no need for A24 Scotland to exist. 

In 2017 the United Nations expressed concern that education in the UK lacked a strategic approach to inclusive education. United Nations concerns and recommendations seem to be missing from the All Our Children’s report or its desk exercise on evidence. 

It wasn’t just the United Nations that felt concerns about inclusive education in the UK.

The Scottish Parliament has debated mainstreaming and inclusion in Scottish education on several occasions in the past three years.  Such debates can hardly be an indication of wide and strong support. Indeed two of Scotland’s political parties voted for a motion that stated “the presumption to mainstream has laudable intentions”, the motion talked about “special educational needs” and that the government will work “to review the presumption to mainstream policy to ensure there can be more uptake of the provision of places in special schools.”

Recently numbers attending special schools in Scotland have increased; marginally yes but still increased. We tend to agree with the United Nations Scotland should: – 

“Adopt and implement a coherent strategy, financed with concrete timelines and measurable goals, on increasing and improving inclusive education”

The What Next for Scotland report on the review of the UK’s response to the UN recommended that the Scottish Government develop laws and policies to support inclusive education in line with UN recommendations.   

However not to worry while the broad definition of inclusive education wasn’t referenced in Theme 2 Mainstreaming and Inclusion. Scotland’s All Our Children report was bound to address disabled children’s rights in Theme 8 Understanding Rights. Surely here would be where we could find a commitment to disabled children’s rights to inclusive education. 

There is some tough talking “Children and young people, parents and carers and practitioners all need to be fully informed and supported to understand the implications of relevant rights based legislation” or the call for a “robust rights based framework”  The problem being that none of this seems to apply to disabled children and their rights.

The Scottish Report gives no attention to the rights of disabled children to inclusive education as set out in UNCRPD (2006) or UNCRPD General Comment no. 4 on inclusive education (2016) or even the Human Rights Council (January 2019) report on ”Empowering children with disabilities for the enjoyment of their human rights, including through inclusive education”

In the end the fundamental misunderstanding and ignorance of inclusive education, the lack of attention to international law and its policy guidance continues to justify the need for A24 Scotland. 

In our view this Report takes us no further forward in part because at legislative strategic and policy level Scotland’s laws namely Section 15 and mainstreaming legislation are not compliant with human rights and international law  as set out by UNCRPD and its guidance from 2017 in General Comment No 4 and the Human Rights Council paper of 2019. 

At the same time as “the Scottish report” was published UNESCO set out its recommendations for inclusive education. They adopted the broad definition of inclusive education. They identified the key measures on inclusive education and the key international reports.  It praised Scotland’s approach to inclusive education in terms of curricular materials for LGBTQI learning. 

They also opened with the comment that reminds us given three recent debates about mainstreaming and inclusion in the Scottish Parliament. That the guid conceit expressed in the Scottish report’s opening statement seems flimsy when compared to the GEM report’s opening which  

“… notes that debating the benefits of inclusive education can be seen as tantamount to debating the benefits of the abolition of slavery, or indeed of apartheid.” 

#BlackLivesMatter has encouraged us to take a new view of Scotland’s role in slavery and its abolition. COVID-19 has laid bare the underlying currents of inequalities in Scottish society and our schools.  

The need for systemic change in Scottish education has to start with recognising the human right of children with disabilities to inclusive education. It’s not just about their feelings it’s about changing systems for all our children.

The GEM Report

Last week of June, saw the launch of the Global Education Monitoring Report 2020 by UNESCO. Another day, another global report with no relevance for education in Scotland, you might think.

Except the theme of this report was Inclusion and Education. No, no. Not another debate and set of policy promises about inclusive education.

Well potentially; except this time we face rebuilding education systems in light of COVID-19. Inclusive education as broadly defined in this report offers the road map to a more resilient and inclusive education system.

The foreword to the report talks in straightforward fashion about how we should view inclusive education. Their approach could not be more direct.  

The UNESCO Report opens with a bold statement  “the Report asks whether it really is necessary to seek justifications for inclusive education to be pursued. It notes that debating the benefits of inclusive education can be seen as tantamount to debating the benefits of the abolition of slavery, or indeed of apartheid.”

In Scotland we have had three debates in the Scottish Parliament over the past three years. The debate mainly features questions about presumption of mainstreaming, level of resources and access to segregated special schools. MSPs rarely spoke up for the benefits of inclusive education, and support for the presumption of mainstreaming lacked the ideas of injustice and inequality that UNESCO discusses.

The foreword views the broad definition of inclusive education not as an access to mainstream but recognition of wider barriers like mechanisms of exclusion.

“Discrimination, stereotypes and alienation do exclude many. These mechanisms of exclusion are essentially the same, regardless of gender, location, wealth, disability, ethnicity, language, migration, displacement, sexual orientation, incarceration, religion, and other beliefs and attitudes.”

The GEM report is published in a full document including charts and tables with boxed examples of good practice for 400 odd pages as well as a summary report and an easy read version. In addition there are a series of short videos and cartoons drawn from the report.

It is well worth a read. After reading the Report or skimming the summary or devouring the easy read you are asked to vote in a poll of the 10 key messages from the Report. You select your own top key message which should be reflected to policy makers in your country. Last we checked Number 1 was winning – Widen the understanding of inclusive education: it should include all learners, no matter their identity, background or ability.

Some other statements from the Report to be further considered within Scotland’s approach would be

“A key barrier to inclusion in education is the lack of belief that it is possible and desirable”

“Financing needs to target those most in need.”

“While some countries are transitioning towards inclusion, segregation is still prevalent.”

“Teachers, teaching materials and learning environments often ignore the benefits of embracing diversity”

The world seems to be taking steps forward and committing to progressing inclusive education while we, in Scotland, are still debating the merits of separate development.

There’s lots to consider in the GEM Report. What’s your opinion?

Lyla's story

My daughter Lyla is 7 and is in P2 at our local primary school. She’s that kid who loves school, she’s sad when it’s time to say goodbye to everyone at the end of term. She shrieks with joy when we pull into the street the school is on, it’s one of her happy places. Everyone knows Lyla. It’s fair to say that she stands out with her big open smile, her pink glasses, her posse of friends –  oh yeah and her pink sparkly wheelchair. 

Lyla was born with a rare brain disorder called polymicrogyria, as a result, she has quadriplegic athetoid cerebral palsy and dystonia. Basically she has a lot of cerebral palsy. She also has a lot of personality, determination, and love. None of Lyla’s friends really care about her diagnosis and what she can’t do. 

I’d be lying if I said educating Lyla in a mainstream school was easy. It takes constant planning, tweaking, and collaboration between her teacher, her two assistants, her therapists, and myself. Accessibility hasn’t been an issue given that her school was newly renovated complete with lifts and a hygiene room shortly before Lyla started nursery in the same building. 

Fostering all our expectations of how Lyla learns and how she demonstrates that learning has been harder than any physical adaptations. There are no magic tricks, no special equipment, no secret techniques that teachers in specialist schools know that would make Lyla’s school experience any different, better or more successful than the one she is having in the mainstream. She is learning, she is happy, she is where she is meant to be.

Lyla’s education is never going to look like anyone else’s. We don’t need everyone to be the same to be educated together. She doesn’t have to earn the right to be there. She has a right to be included in her local primary school for being herself.

Simply being alive is exhausting for Lyla so building up stamina to last the full school day is a work in progress. Lyla finishes school an hour earlier each day. It has taken 2 years for her to build up from 3 hours a day to 5 hours a day of school.

Entering school via the playground was hugely stressful for Lyla so we quickly adapted to entering by the foyer so she has a quieter start to her school day. She needs extra time for hoisted transfers from her wheelchair to her indoor chair and standing frame so she leaves class a little early for break and lunch so that she gets to play with her friends as well as having her snacks. Some days when her dystonia is particularly painful she might spend time in a quiet comfy room known as the Snug where she can take time and come back to class when she has had a rest. 

Every day is different and her days rarely look like anyone else’s but that’s ok. The specific things she needs might change as she gets older or they might stay the same. What we’ve learned is that it doesn’t mean she needs to be educated anywhere other than her local primary school.  

When we look at education for all we have to adjust our expectations of what a successful school day and school experience looks like. Once we accept that not everyone’s school day has to look the same to be successful it’s easier to imagine a truly inclusive education system. 

What makes the biggest impact for us is that the school wants Lyla to be there, that her assistants and educators believe she belongs in their school, that they don’t want to give up after every difficult day. They know that the good days far outweigh the bad and that the wider school community benefits greatly from Lyla’s presence as much as she benefits from being included in a mainstream setting. 

Inclusion and happiness

Friends are underrated. 

For my autistic son feeling included at school began with making friends. Some children need a little bit of support to do that for various reasons. It can be because they struggle with communication. 

But communication is a two-way process and the best communication occurs when there is empathy on both sides, so friendship has a chance to develop. If there is pressure on one child to fundamentally change who they are, and the other child doesn’t know how to adapt their communication style then it’s difficult to come to an understanding. However, if the children are supported to be able to understand each other better then empathy and friendship follows. 

But it seemed unlikely that after three years of being lonely and without friends the situation could be much improved. Would ANY of the other children even want to be in my son’s circle of friends? What about their parents? I can’t pretend I wasn’t worried about their reaction after all not everyone believes disabled or autistic children should be present in schools and my son had gained a reputation for trouble. The “trouble” really came from his strenuous but unsuccessful attempts to fit in and belong but it had become clear that children had been instructed to stay away from him in the playground and questions about his behaviour had been asked of his teacher. I was worried the situation was too far gone. 

However, it turns out ten minute, weekly meetings of a Circle of Friends (by Inclusive Solutions), facilitated by a teacher to discuss what has gone well and what could have gone better is rocket fuel for inclusive relationships! My son has never been happier. The other children who in the recent past were avoiding him seek him out for games in the playground. He has a group of regular friends for the first time and has started to dip in and out of other friendship groups as his confidence grows.I had hoped this would help my son make friends and be happy but I hadn’t realised the effect this inclusive approach would have on the other kids. They seem much happier too. Perhaps the lesson is that children want to be inclusive and sometimes just need a wee bit of help to find ways to make it real. I think all the children in his classroom are benefitting from learning about one another’s differences and similarities together now. As for the parents, they can see that their children are happy and really that’s all they want. 

An unexpected side effect is that my son’s learning has taken off too. It seems being included makes him more available for learning. I know his teacher is pleased about that! It’s important that all children get the opportunity to know each other through the shared experience of school. His school is just an average Scottish local primary school with the same social issues and funding problems as all the other schools in the country, but within it the mutual benefits of inclusion have been realised for my son and his classmates.

Jordan’s story

Jordan is an advocate, a valued member of the workforce who often speaks at events and conferences in support of other learning disabled adults. He has gone from being supported to doing the supporting. He has shared his expertise and his schooling experiences with A24. 

Jordan when he was at Primary School and Jordan now

Primary School

Jordan attended an average sized mainstream primary school along with around four hundred and fifty other pupils. There were thirty children in his class, most of whom he would call friends. His physiologist wanted him to go to an ASN school but his family fought for him to be at that mainstream school.

He had the same classroom assistant throughout his primary years. He liked all his teachers and found the work understandable. His classroom assistant helped him with reading. She also kept him focused and concentrating. He did all his own writing and maths work. The only other support he had was in the form of a footstool.

His assistant also worked in the school office which he found to be helpful because it meant she was not in the playground with him which allowed him free time with his classmates. He had lots of friends and has many happy memories of his primary years.

Secondary School

Secondary school was a slightly different story. He only had support during certain classes which helped him concentrate better. Some other children also had support such as a scribe and facilitator. He didn’t feel any different from the rest. He had numerous different support assistants over his time there which he struggled with a little. He had extra support during his tests and had an option to attend an afterschool homework club.

He lost touch with his friends from primary school and while he got on well with most people he didn’t feel that he made many friends. That said he did meet his best friend at secondary school. He wished he had more friends though.

He did well in his first lot of exams but his studies were disrupted in fifth and sixth year due to prolonged stays in hospital. Someone came to the hospital to support his studies there. On his return to school he used a wheelchair. He self propelled and although he found navigating the school was tricky he did think it was doable on his own.

World of Work

Due to being in hospital he missed valuable work experience but he got a lot of support from his guidance teacher about careers. He went on a college course where he learned interview skills, CV writing, money management and social skills before going on to do his NVQ in management which included a work placement.

After a short stint at Capability Scotland, Jordan is now a consultant for the charity Values into Action which supports people with learning disabilities or who are autistic to achieve their goals. He interviews people about the support they get in their own jobs and advises organisations on what they should be providing for their employees. 

His message is to ask people what support they would want.

Spirit of Inclusion

Well, the long wait is almost over. Half of the doors on the Advent calendar are hanging open and – for my three-year-old, at least – the sound of reindeer hooves on rooftops can’t come quickly enough; while I am still trying to find my back-of-an-envelope calculations from last year that tell me how long to cook the turkey, and scrabbling around the back of my brain for a gift idea for that tricky member of the family. Which means: it’s Nativity season!

Photo of three children taking part in a nativity play. Girl on the left in a sparkly dress wearing a blue head dress as Mary. Boy in the middle sitting in a wheel chair with a red checked scarf on his head as Joseph. And a another boy standing beside them as another character from the Nativity. A doll in a cot sits at the front

Having three children in two different school settings poses its problems, of course, but it certainly makes it difficult to escape the Christmas cheer as I attempt to remember two Christmas jumper days, two Christmas lunches, buy gifts for three sets of teachers/TAs/escorts and endure enjoy two Christmas fairs, a Christmas concert and a Nativity without cracking open the Aldi sherry I’d bought to go with Santa’s mince pie and Rudolph’s carrot.

I’ll come clean here. My little boy, who is in every way a superstar but has some complicated additional support needs, does not attend our mainstream local school with his sisters. Mainly because when I was younger and more naïve I trustingly followed the well-trodden path paved with therapists, equipment, experience, and support. Fortunately for us, in our local authority that path does not lead to a fully-fledged special school but to a support base within a lovely small primary school in a similar town to ours, twenty miles across the county.

So, although my son spends most of his time in a class of seven children, all with their own support needs, he does have his name on the register of a mainstream P2 class. He is known and loved by children and teachers throughout the school; he takes some lessons with his mainstream class; he attends assembly with the whole school; and each year one lucky mainstream class – and they truly do feel they are lucky – gets to do a Nativity play with the children in the support base.

Close up of a little boy wearing a red checked head scarf dressed up as Joseph for his school nativity play.

Well, there’s nothing like starting at the top: last year, in his very first year, my little boy was chosen to play Joseph! Joseph, wearing an authentic Middle Eastern headdress on his head and a teatowel on his lap. Joseph, to a Mary with no additional support needs. To say I was nervous would be an understatement. Would he fall asleep as the baby Jesus was born? Would he vomit and need suctioning while the Angel Gabriel tried to deliver his message to Mary? And how would Mary and the rest of the mainstream cast react to him? Would they be patient while he fumbled to press the switch that delivered his lines? Would they ignore him? Would they let him in?

I needn’t have worried, of course. We see it time and time again – children who are allowed to become used to diversity just get on with it. They have an innate tendency to see past the wheelchair and the feeding-tube to just another child. Our Mary and Joseph formed a perfect tableau together with their roughly-handled baby Jesus exactly as in schools across the country at this time of year. They just played their parts, smiled for the cameras, and milked their well-earned applause.

We are so fortunate that my boy gets to experience inclusion in his school community – many children do not have this right met. But having seen how simple it is, I wish he were included in the same school community as his sisters, as is also his right; I wish he were part of the town where he will grow up, live, play and work through his school years and beyond. And that’s something I’m working towards, because if one mainstream Mary can accept my Joseph, then that can happen anywhere. Merry Christmas!

[Alex Davey is a mother, botanist, activist and writer living in sunny East Lothian. She blogs at www.thelongchain.wordpress.com]

Two Children, One School?

Both my children currently attend mainstream primary school where in theory they both access the same educational opportunities. My daughter is neurotypical with no additional support needs and my son is autistic and has benefitted from additional support. I value their equitable access to school, and I have worked with the school to ensure my son’s needs are met within the same school as his sister and his peers. Did I make it sound simple?

Scotland’s journey towards inclusion is a work in progress.

Well, there are funding choices being made that may make the presumption of mainstreaming impossible to achieve for many disabled children. Please be in no doubt a failure to provide adequate support in mainstream schools for children with additional support needs is to choose to discriminate against disabled children. Underfunding risks creating a situation where constructive exclusion can occur meaning children are confined to special schools or home education. There is a need for quality, mandatory training so head teachers, class teachers and teaching assistants are not overwhelmed, unsupported or lacking in confidence. This lack of knowledge can lead to a lack of empathy allowing discrimination to occur for example, I have been asked to understand “how busy they are” and to remember that “these children often get off to a slow start in school”. The lack of knowledge around autistic communication is also an issue leading to instances of unnecessary physical handling of my son. Communication between schools and families can be difficult, overwhelming and often family’s voices are not heard. These negative experiences can create an adversarial relationship between families and schools and leave families isolated in school communities. There is a real need for schools to find ways to communicate with families in an open and mutually respectful way that allows space for families to be able to share knowledge based on their own lived experience. There are difficulties in the present system but working towards inclusion is still achievable.

When it works it’s worth it!

OK so, friends don’t need funding or special training. A school can help promote inclusion by making sure all the children are involved with their peers which means happier and more confident children across the classroom. As soon as my son had support to help make friends, he was much happier. And some teachers just seem to get it. They simply teach to my son’s strengths and I’m glad to say his teacher this year is great. My son is confident with her and when children feel happy, they are learning. It’s particularly noticeable when a school staff member has personal experience of disability and then they seem to have a great relationship with him quite naturally. This highlights the importance of recruiting people with lived experience of disability into the school system and of forming relationships with families who have lived experience of disability. Good quality training is still necessary of course and the most progressive and insightful training comes from disabled or autistic people’s organisations who have first-hand knowledge and skills. I imagine that teachers were once the kids that loved school and thrived there, so maybe that’s why they sometimes struggle to relate to kids that don’t experience that environment in the same way. In fact, most teachers probably didn’t have the opportunity to attend a school where they knowingly shared a classroom with a disabled classmate; it’s so important schools now break that cycle and work towards inclusion. ​

A24 Scotland’s Future

I am a member of A24, a new organisation in Scotland which works to achieve inclusive education for all children and young people in Scotland’s schools. We are a group of parents of disabled children, disabled people, practitioners and researchers. I support the aims of A24 because I want both my children to continue to belong in our local school community and because all children do better in inclusive education systems. Children with disabilities who experience mainstream education are healthier, happier and will be more likely to participate in their communities. They have an improved outcome in terms of employment and independent living after school which ultimately saves money. They learn academics plus develop socially and emotionally. In fact, all the students in mainstream settings have daily opportunities to practice social skills like acceptance, patience and empathy when disabled children are present. All the children experience how to live, learn and play together. Growing up you learn who you are from the influences around you. School education systems can help set your expectations for life. I want to ensure that my son is as welcomed and valued as my daughter is in a mainstream setting and he is not regarded as a guest who can be uninvited at any time. He deserves equity in his experience of education. Most importantly he has the right to be in the same school as his sister and his friends and he wants to be included with them.

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