Partnering with Schools for Inclusion (Part 1 of 3) with Dr Melanie Heyworth

Partnering with Schools for Inclusion (Part 1 of 3)

This is the first of a 3-part series on partnering with schools for inclusion.

Adapted from a masterclass of the same name, join Dr Melanie Heyworth for this first instalment, which focusses on understanding your and your child’s rights as they relate to inclusion and on defining the meaning of inclusion.

With a foundation in the UN Convention of the Rights of Persons with Disability and the Australian Disability Standards for Education, we explore how inclusion is a human right.

We further explore what inclusion actually is (and isn’t). The audience for this presentation is primarily parents and carers of Autistic children, though education professionals might also find the contents relevant.

Note that this presentation will refer to Australian laws and to the specific Australian educational context.

Transcript

I presume that some of you will have seen me in different places around, the place, but just to give you a little bit of a sense of a background and who I am and what’s gonna happen today.First and foremost, I’m an Autistic adult, but very closely followed by that I’m a mama to three, absolutely fabulous Autistic children. We’re not just Autistic, between us we have quite a formidable array of co-occurring mental health and intersectional identities. My children have attended a variety of school settings and indeed a variety of schools. This year we’re combining the educational settings of distance ed for one child, we’re doing structured homeschooling for another and I will do unschooling for another. So, this area of inclusion is a real passion of mine because my children have primarily really had experience of extreme educational exclusion. I’m also an Autistic Autism researcher, and my particular interest is in Autistic wellbeing and flourishing that’s in the classroom and beyond. But I’m actually… My second PhD that I’m doing right now is in the relationships between parents and their Autistic children and as well as that, I’m the CEO and founder of Reframing Autism. So that’s me.

What we’re gonna do today is a fairly simple agenda. We’re going to talk about your rights and your child’s rights. We are going to look at what inclusion actually is and some of the conditions of inclusion. And then we’re gonna look at those steps that you can take to create inclusion in partnerships with schools. That’s actually… It really is in quarters. It’s just a quarter of what we’re gonna talk about today, because unless you understand what inclusion is and what you can demand for your child, what your rights are, what their rights are, and what it you want it to look like, it’s very hard as a parent to advocate and partner with schools to create something if you don’t know what that something looks like. So a good portion of today is about what we want it to look like, what we want it to look like for our children and for ourselves as parents.

Before we begin discussing what inclusion is, let’s establish something from the outset. Inclusion is a human right. It is your child’s basic human right to have access to inclusive education. That means that no one, not the Department of Education in your state, not the Australian government, not a principal, not a teacher, no school can deny your child the right to inclusive education for any reason. As I said, I say this as a parent who’s withdrawn their children from inclusive schooling or mainstream schooling because I grew very tired and it was very bad for my mental health and my children’s mental health to keep fighting the battles to actually exercise that right. But it is your and your child’s right. And as your child’s parent or caregiver, you can of course advocate for their right to be educated inclusively. And of course, as I said, you’re not that simple and here I am as a homeschooler. So it’s clearly not that simple. But I wanted to begin this masterclass establishing the fact that you can and should demand inclusion for your child. I think very often as parents, we feel really disenfranchised in our educational decisions about our Autistic children, that we don’t really have valid or many or few or even no choices about what happens to our children.

And for us in Australia, I think the inequity of the school catchment kind of scenario means that we have no effective schooling choice and things like My School, which was meant to help us make better choices about school and it’s administered by ACARA, the Australian Curriculum Assessment and Reporting Authority. And it was meant to support national transparency and accountability and consistent school-level data about every school, an example. But you can’t obviously search My School for what is a genuine inclusive school, or one that’s particularly good with Autistic kidlets. You can’t search for schools that have a reputation for inclusion. And if by chance you found a school that resonated with you on My School, even if it was geographically local to you, which many of them are not, the reality of catchment areas means that you, it’s highly unlikely that you could access that school without moving house, which isn’t feasible for many of us. And really, we have to acknowledge as parents, as a nation that Australian education by its nature is really not inclusive for Autistic children. There are currently around over, just over 520 SSPs. So that’s schools for a specific purpose, greatly known as special schools on My School and that’s across Australia. And we really have put our funding into these sorts of dominant, segregated educational models.

So I’m speaking from New South Wales, but we call them support classes or Aspect Satellite Classes. But those classes that are specifically for Autistic or children with other disabilities, intellectual disability, et cetera. And those kinds of models are by nature and definition exclusive, not inclusive. And it makes it enormously difficult for us, for parents of Autistic children to feel that we have a real choice in our child’s education, or really even a real hope for an inclusive environment for our child. So Australian or parents of Autistic children, I think are confronted by the reality that our system is actually set up to perpetrate, sorry, perpetuate exclusion and segregation, and that our choices are limited in finding appropriately inclusive school settings for our children.

Before we go any further, it’s really important that you know what your child’s rights are and to know exactly what you can demand and expect from Australian education. So that’s where we’re going to start. If I can make my… There we go. So I wanna start with a UNCRPD. The first thing you should know is that Australia is a signatory to the United Nation Convention on the rights of persons with disability or the UNCRPD or just the CRPD often. Basically what that means is Australia has voluntarily ratified the CRPD and is bound under its articles by international law. We are obliged as a nation to implement its content in our legislation and policy decisions. We don’t, but that’s the framework under which we as parents can actually demand these sorts of things for our children. We can cite the CRPD because Australia is a voluntary signatory.

So what is the CRPD actually say about inclusion and inclusive education? So the first thing, general comment four to article 24 of the CRPD was adopted in 2016. Now, general comment four built on what was already there in the CRPD that required country signatories to recognise the rights of persons with disabilities to education. And it bound them to ensure an inclusive system at all levels. So this was what used to be there, or that this was as much as it used to be. And in Article 24.2, it goes on to define some of the criteria of inclusive education, which included not being excluded from general education, access to education on an equal basis, and the provision of reasonable accommodations to support education. But I think we probably all know from our own experiences and our children’s experiences that not being excluded is not the same as experiencing inclusion. And access to education doesn’t dictate its inclusiveness or its quality. Reasonable accommodations, these things are open to interpretation if for no other reason than who exactly decides what is reasonable, what does reasonable mean. And a good example was when my eldest son was at a Catholic school, we advocated for him to be able to have a therapy, an assistance dog, sorry, with him in the classroom. And they deemed that that was not reasonable, a reasonable accommodation for that particular school. And it was very hard to get around this sort of very broad sense of what’s reasonable and to whom.

So what happened was general comment four was provided by the UN give more specific guidance because these sorts of criteria were just too broad and they were being taken advantage of. So there’s some real highlights in general comment number four, which was put out to kind of give us a sense of what does this actually mean in practise.

In paragraph seven, and this is something that seems to go under the radar a lot, but is really important for us as parents. Autistic children and their families… I’m gonna talk about Autistic specifically here, but of course the CRPD is about all people with disabilities, not only Autistic people, but in paragraph seven, it talks about the fact that Autistic children and their families are partners, not merely recipients of education. So we should be active partners in our children’s education, and our children should be active partners in their own education.

And in paragraph 70 some ways on, this idea is expanded and it says that parents and caregivers can serve as partners in the development and implementation of learning programmes, including individualised education plans. But note that it’s not just individualised education plans. So we should be able to be partners in the development and implementation of learning programmes. It goes on to say that we parents, can play a significant role in advising and supporting teachers in provision of support to individual students. So that dictates the fact that we have a right to have a role, to have an active partnership in our children’s education and never forget that because it gives us a great deal of power.

In paragraph nine, the CRPD requires a transformation in culture, policy, and practise to realise genuinely inclusive education and to dismantle, it says or eliminate the barriers to achieving inclusion. In paragraph 11, it distinguishes between exclusion, segregation, and integration, and it distinguishes those things, exclusion, segregation, integration from inclusion. And I’ll return to that kind of concept presently. So I’m not gonna go into any more detail here, but just keep that it does distinguish between those modes of education.

Paragraph 11 defines inclusion as involving a process of systemic reform, embodying changes and modifications in the content that’s being taught in the teaching methods, in the approaches, in the structures, in the strategies of education to overcome any barriers with a vision serving to provide all students of a relevant age, range with an equitable and participatory learning experience and environment. These are really strong words that talk about us and our children as participants in their education, not just recipients of education that talk about our role in actually being a part of educating our children, that we are not sidelined and taken off in the hopes that somebody else will educate our children, that we have a role to play here.

In paragraph 12, the CRPD actually then talks about nine core features that make up inclusive education. And it says, there should be a whole systems approach so all levels of government, both federal and state in Australia, all levels of policy must embed the principles of inclusive education in their approach.

Now, most of us, I think around Australia would stop at that point and go, ‘Well, we haven’t achieved that. We’re a long way from that one.’ But nevertheless, that’s part of a core feature, the whole education environment. So inclusion starts from the top, and our educational leaders must embed the culture of inclusion into all of the schools. So that’s more like a department level. It needs also a whole person approach. So a right to the… It talks about the right to flexible curricular, flexible pedagogy, personalised responses, and a presumption of competence and that’s a really important one. So, we’ll come back to that as well.

It talks about supported teachers, so appropriate training and education for teachers and their support staff. And I’ve just been doing some other research on education in, from a teacher’s point of view. And when you look at the research, and this is globally, not just in Australia, but the one thing that makes a difference to teachers or the one thing that they feel that they don’t have that would actually make a difference to their provision of inclusive education to Autistic children is that they don’t know about Autism. They do not receive enough specific training and specific support for Autistic children. They just don’t know about it enough to provide knowledgeable informed education. So that’s something that we really need to do to support our teachers.

It also dictates a respect for, and value of diversity. So, really what it’s talking about is providing environments which ensure a safe, supported, stimulating context for self-expression. And that’s particularly important for our little people or our bigger people who are going to have these intersectional identities. They might be LGBTQIA+, the likelihood is much higher than for the non-Autistic population. So we are going to have, we need to be able to have these environments that reflect and respect diversity in all in its guises. So, it’s not just about our Autistic identity, but about diversity generally and embracing and respecting diversity in a very global kind of way.

Learning friendly environments. So environments which, sorry, I mixed up my notes. So respect for value is gonna be the right to feel valued, respected, included, listened to and protected from bullying. That makes a lot more sense and a learning friendly environment, which is going to provide a safe, supported, stimulating context for learning and for self-expression.

Effective transitions and these are both, microcosmic transition and macrocosmic transitions. So maybe transitions within a school, between classes, even at high school, between lessons, but also from between schools, so from primary to to high school to post-school options, making sure that our children are supported across the lifespan and all the transitions that they need to make. Again, this is a core feature of inclusive education is the recognition of partnerships. Again, that parents and caregivers have the right to be viewed as valuable and with strengths to contribute to an educational partnership. I’m not sure if any of you have ever come across a moment where you felt dismissed, that your knowledge, your experiential knowledge and expertise in your child you felt that that was dismissed or not taken seriously enough. That is a violation of your right to partnership and to have your strengths to contribute to that partnership valued.

And the last thing is monitoring. So basically we have to keep like looking and making sure that if we claim to inclusion, that it’s actually inclusive, it’s not tokenistic or superficial. So as you can see, it’s really a very important sort of framework for us to understand and to read.

So in paragraph 25, the CRPD dictates that inclusive education will apply UDL or Universal Design for Learning and that approach, and again, I’m gonna return to that later.

In paragraph 33, it talks about things like in-classroom support measures like teacher’s aid, for example, that these have the potential to contribute to marginalisation of our children. So in fact, we have to think about how aids are used to strengthen opportunities for inclusion not to contribute to the marginalisation of our children.

And I’m just watching the rain here in Port Macquarie start to bucket down and thinking that I put out washing this morning, and that’s going to really… That’s not good for my washing. Nevermind.

Paragraph 34 requires that children with complex communication needs, so that is children who don’t use speech as their primary form of communication, that they are able to express themselves and learn using alternative or augmentative communication, so IIC. So that dictates the right for our children to use their IIC of choice in an inclusive classroom.

And paragraph 68 dictates that governments should transfer resources from segregated environment. So we should see no more support units or segregated classrooms because we are meant to be using that funding to build inclusive education environments. So we should put our education budget towards inclusion, not to building more special schools or segregated units.

Essentially to deny an Autistic child access to this kind of inclusive education, the kind of inclusive education that the CRPD talks about, that constitutes discrimination against that child. So probably your first job after this masterclass is to go and read the UNCRPD, particularly Article 24, and particularly general comment four, because that’s going to give you that human rights space, the righteous fight inside you that you have the right to demand your child has the basic human right to demand inclusive education. And I know this is about partnerships, but sometimes knowing that we have the right to ask for things that we’re not being that painful parent. And I say that as the painful parent that teachers ran away from whenever they saw me. We have the right to demand this. That’s part of our making partnerships with school, is knowing our rights, knowing our children’s rights.

The other document you should be thoroughly acquainted with before you start back at school is the Disability Standards for Education 2005 or the DSE. Basically, the DSE is a specific Australian educational statement, which accompanies the Federal Disability Discrimination Act, the DDA of 1992. The DDA broadly makes it illegal to discriminate against a person on the basis of their disability in the area of education. So that’s its broad comment. But the DSE, the Disability Standards for Education clarifies or tries to make some attempt to clarify the obligations of educational institutions and what the rights of people with disabilities are. That’s what it’s meant to do. But what you’ll see is if you do come to read the DSE, much of what it says is framed around again this kind of reasonable adjustments with little guidance of what is reasonable and in whose eyes it is considered to be reasonable. So what we consider to be a reasonable accommodation in our eyes as parents, is not necessarily aligned to what a school might see as reasonable and who decides what’s reasonable. Usually it’s the department rather than us as parents. So, we’ve established that your child has the right to inclusive education, but I think it’s time to take a much closer look at that word and some other key terms that you are gonna come across when you’re looking at inclusion.

So what I wanna do next is really answer the question, what is inclusion? So let’s start with what actually inclusion is not. And inclusion is not, especially in Australia, synonymous with or a given within a mainstream education. So just because your child is in a mainstream educational environment doesn’t mean they’re in an inclusive or inclusion, they’re experiencing inclusion. And as I said before, mainstream education is not necessarily, and in Australia, it’s very rarely, genuinely inclusive, I would say. Instead I think it’s a word that’s used often, it’s a concept that we talk about, but I don’t actually think it’s genuinely understood and certainly not by educators as well as by a broader sort of population.

So if you look up the word inclusion, if you go off and look it up as it relates to disability rights, usually you find something along the lines of providing equal access to opportunities and resources for people who might otherwise be excluded or marginalised. And this definition, I think I’m gonna argue, is fundamentally incorrect on a couple of levels because inclusion is actually about equitable access, not equal access. Equal access implies that everyone should get the same and equitable access talks about everyone getting what they need. And the visual on the graphic, which visualises this idea on the screen, I have no doubt that people have come across this before and it is a little bit crude, but you begin to appreciate when you start to think about everyone getting the same and that equality side of things. Everyone got one box even though someone didn’t need it.

And the little person then doesn’t get to see the ball game at all, the baseball game. I’m presuming it’s very American. And, we begin to appreciate in this kind of, as said crude as it is, this graphic that everyone getting the same isn’t actually gonna address the systemic barriers that many people face. It’s really only by insisting on equity that we can ultimately in the long term achieve equality. So if for people to be equal or have equal opportunities, we actually have to talk about equity first about getting people what they need. So we can’t achieve equality without achieving equity. So it’s sort of the conduit, if you like, for equality, because equality doesn’t actually beget equality. I wanna come back to this graphic shortly. So that’s one problem. So equal access isn’t going to help us as Autistic people. We don’t need equal, we need equitable access.

And the other problem with the definition, that definition of inclusion is that it talks about access to opportunities and resources. And this idea of access is really limited and very passive compared to what we need to do. So this is how this kind of inclusion, if you’re calling, access inclusion. This is how it’s often visualised. And again, I’m sure you’ve seen something similar to this before. And as I said, I was gonna come back to these, these terms of exclusion, segregation, integration, and I’ve called it including rather than inclusion because I’m not sure that this is inclusion.

So exclusion is when, if you imagine the rainbow dots are all people who have barriers of different types, but let’s call it our Autistic kids. Exclusion is when they’re outside of the circle. Segregation is when we’ve grouped them all together outside of the circle. Integration is where we’ve moved their circle inside the bigger circle, but they’re still not part of the main, the rest of the green dots and including is when we start to disperse those rainbow dots in among the green dots. My argument is that that’s not inclusion. That last one, that in what I’ve labelled including where the rainbow dots and the green dots are all together isn’t a vision of inclusion. Actually what it is, it’s simply not having barriers that exclude. It captures an action of including but not the genuine achievement of inclusion. So whenever you feel, and as an Autistic adult, I was talking to some, I was doing a guest lecture on social inclusion the other day, and one of the points I make was, if you feel inclusion, you actually feel this kind of supportive energy and active commitment to, not just you being there but being involved, being welcome, feeling belonging. So inclusion for me is much more than simply being allowed in within the circle, allowed to mix with others within the circle. It actually requires an active facilitating of all people to feel welcome and to belong. And so welcome and belonging are really important terms for our kids. They need to feel welcome and they need to feel belonging in order to experience inclusion. And I think that’s something that we’re really missing. So what about this? This is another option. For some, and there’s some arguments online, if you go again and have a look at these kinds of diagrams, this is the next step we have to take. So you can see that the same exclusion, segregation, integration, what I called including and then inclusion. And you can see that actually what’s happened in inclusion is that the dots are not green dots and rainbow dots, but everybody is a rainbow dot. Everybody is a diverse person. And what that symbolises is that we, this next step that we need to take to realise genuine inclusion is an embracing of everyone’s differences because that breaks down the us and them narrative that’s really latent in that, what I’ve called the including circle.

So inclusion requires not only actively embracing and valuing what was the rainbow dots, but also supporting what were homogenous green dots to be able to experience their diversity as well, their uniqueness, their right to inclusion because it’s through that, that we don’t have special needs children, additional needs children because every child has needs and we meet the needs of every child, the diverse needs of every child. Imagine if you had a classroom where the Autistic child wasn’t the Autistic child, they were just the child alongside their peers because everybody’s diversity and everybody’s diverse needs were acknowledged and met as different, rather than trying to have a homogenous group of green dots that all do the same, which makes our children’s differences look really, really prominent rather than sort of trying to think about embracing diversity in all its guises.

And that goes back to that CRPD definition of embracing diversity. So, I think it’s one of the ingredients that’s missing in many current discussions about inclusion is that we have to really understand that inclusion and diversity intersect. So when we think about inclusion, we are gonna have to think about diversity. And as I said, it’s not diversity just for our children, it’s diversity in all its guises, in all its forms because inclusion occurs when diversity is embraced as the norm. As I said, where differences aren’t regarded as euphemisms of special and additional needs, but it just met as human needs where each individual’s needs are validated and met.

And I’ve already said this, can you imagine a world, an educational environment in which our Autistic children weren’t considered the weird ones or the burdensome ones or the ones that needed the special accommodations because all children’s differences and diversity were embraced with equal rigour and enthusiasm? And I’ve included two really gorgeous quotes here that capture this idea. And I don’t often quote at length, but I kind of feel like these people have done it better than I would.

So in an inclusive environment, diversity in the student participation, sorry, population would be seen as the norm, as a strength rather than through a lens of deficit. And that’s from the future of education. And then that second quote there, inclusive education involves embracing human diversity and welcoming all children and adults as equal members of an educational community. And it’s that welcome that I think we really have to start to emphasise. This involves valuing and supporting the full participation of all people together within mainstream educational settings.

Inclusive education requires recognising and upholding the rights of all children and adults and understanding human diversity as a rich resource and an everyday part of all human environments and interactions. And gosh, that sounds good to me, to be honest. That’s what I would like my children to be able to be educated in that kind of environment.

So let’s take as one of the inalienable foundations of inclusion, this kind of idea that acknowledging that inclusion rests on a philosophical basis of normalising differences and diversity. So everybody is different, everybody is diverse, and then embracing and valuing and welcoming the rich diversity that exists within humanity. For me, any definition of inclusion has to acknowledge equity, active involvement, and that belonging that comes from having your unique presence valued. And that’s what the cornerstones are gonna be. And if we can kind of start to try and build this with our schools, equity what they need; active involvement so that we are active, the teachers are active, our children’s are active in their own educational journey and having their unique presence valued and welcomed because all diversity is valued and welcome. We are gonna come to a much happier, safer space for educating our children. And I know this is all very philosophical and high level, but I just wanna challenge you to think about inclusion just a little bit more deeply again. Because when we start to think about this, it becomes quite emancipatory, this kind of inclusion. Part of the reason, I use the word emancipatory as a way to describe inclusion is because what we use, the word we use now, inclusion has been diluted to just made that including, and I don’t think that captures what inclusive education is all about. So if we could use this term emancipatory inclusion, it’s gonna capture a lot of the real essence of inclusion that’s been lost as we’ve kind of conflated this idea of including with this idea of inclusion.

What makes inclusion emancipatory? Well, it’s emancipatory when we start to see that all of those elements of inclusion actually build individual liberty and autonomy. And you can think about liberty in many ways, and I know, it’s not a term we use very often, but liberty can be that we are free to do things. We are free to explore ourselves, express ourselves, be who we are, be intact, be Autistic and authentic. And it’s also liberty in the other way that we are free from impediment and coercion and interference. So we’re free from other people trying to put ideas on us and that builds our autonomy. So we’re actually thinking about educational inclusion here as a way of dismantling the systemic barriers that curb and limit our freedoms to be included and to feel welcome and belonging.

So there is this sort of, we have this amazingly important role as parents to think beyond what the current sort of very narrow definitions and ideas are to think to something much bigger. We are often incredibly successful advocates for our children. So we need to make sure that we have the highest kind of ideals and we want our children to be autonomous and to experience that sort of emancipation that they’re free to explore themselves and to be who they are and they’re free from other kinds of outside influences that would make them less than or different to who they actually are as Autistic individuals.

If you return to, our equality and our equity graphic, we’ve talked about inclusion requiring equity, but if we talk about inclusion as emancipatory, then it’s going to give this kind of sense of liberation. And again, crude graphic, but not the liberation necessarily of watching the baseball game, but of access to the highest quality, most meaningful and relevant education for all children, including our Autistic children.

Basically, as parent, we need to settle for nothing less than breaking down those barriers of accessibility that make school so often inaccessible and often quite torturous route Autistic children. And it’s because through this kind of liberation in education that our children after school, post school will have political and financial and social inclusion. So this is setting them up for experiencing inclusion in the rest of their lives. And I think one of the things that, and it may just be me, but one of the things that I noticed as I went on in my advocacy journey for my children was that my expectations got lower and lower. My expectation by the time I pulled my children out of school, my expectation was simply that, I just didn’t want the school to harm them any more than it already had. I didn’t have these great expectations for autonomy and building a child, growing a child that was going to be liberated and autonomous as an adult. And that’s my biggest regret is that I lost my high expectations. It’s not enough to expect that your school, to set your expectations at not doing harm. We have to have the grandest expectations for our children because that’s what they deserve. Oh no, it’s not gonna work. There we go. So I encourage you to think of inclusion well beyond this. So what we’ve got here is, what we had as inclusion with all the rainbow dots to something a lot more like this. What if, we had this idea of inclusion, which celebrated the unique diversity of every child so that every child’s needs and differences were embraced and respected, so that every child’s needs in differences were normalised as just human needs? And I think that’s kind of where we wanna take our educational system and the education system might come kicking and screaming so it’s our job to lead it there.