‘I can’t talk. I can’t walk. I can’t take myself to the bathroom. Big bummer.’ (Draper 2010 p. 3)

The greatest challenge faced by Melody is that because she is unable to speak verbally, her intelligence is underestimated. Consequently, a doctor announces to Melody’s mother:

‘…it is in my opinion that Melody is severely brain damaged and profoundly retarded….You can choose to keep her at home, or you can send her to a special school for the developmentally disabled…You can also decide to put Melody in a residential facility where she can be cared for an kept comfortable.’ (Draper 2010 p. 22-24)

This novel describes Melody’s journey in finding her voice through Augmentative and Alternative Communication (AAC). It has striking similarities to ‘Everything I Never Said’ by Samantha Wheeler, as both are first-person narratives from disabled girls who are non-speaking but who are desperately seeking a way to communicate the rich ideas within their minds. As well, both were written by mothers of disabled children. However, there is one significant difference. Samantha Wheeler’s book skilfully draws on the social model of disability to convey that the obstacles to inclusion are within the environment. In contrast, Sharon Draper’s book attempts to convey a similar idea but fails.

Part of the failure of Draper’s novel is the outdated language, concepts and ideas about disability that perpetuate the idea of the ‘other’. For example, disability slurs such as ‘retarded’, ‘spazzed out’, and ‘idiot’ are peppered throughout the text yet are never challenged in any way. There is an acceptance of offensive language and overt discrimination, even though Draper claims that her book promotes disability acceptance and inclusion. The concept of ‘inclusive education’ is poorly presented within the text. Melody is allowed to attend ‘inclusion classes’ with ‘normal students’. These classes are simply poor examples of integration, where large numbers of students from segregated classes are provided with the irregular opportunity to visit a general education class with a teacher assistant. The general education teacher refers to the disabled students as ‘guests’; there is no concept of being valued or belonging within the class. There is also no concept of ‘natural proportions’, which is a crucial feature of inclusive education, where the natural proportions of disability in society are replicated within classrooms. In Melody’s class, the students with disability were congregated together in ways that are not helpful.

I’m unsure whether the failure of ‘Out Of My Mind’ is due to cultural differences, as the book was published in the United States and language of disability varies from Australian terminology. I also wondered if the novel was set in a previous era, but if so, this is never made clear within the text. Either way, I do not recommend this book for children as it reinforces stereotypes and tropes while failing to challenge to status quo.

The post Book Review: ‘Out of My Mind’ by Sharon Draper appeared first on Inclusive Education Planning.

Special education and inclusive education are based on diametrically opposed philosophies. The former utilises the medical model of disability where disability is viewed as a deficit that resides in the individual. Within this thinking, disability must be remediated so students can fit into a normative idea of education. The latter is based on the social model of disability where barriers to education stem from the environment, structures within education and negative attitudes toward disability rather than from the student’s impairment. Inclusive education is where all students, regardless of their disability, are placed into age-appropriate, general education classes in schools in their own neighbourhood, to receive high-quality education that enables them to be successful. Inclusive education recognises that variability is the norm rather than the exception. It is based on the idea of equity, where everyone receives the supports they require to be successful, rather than equality, which is where everyone receives the same.

I initially studied to be a primary school teacher within general education, yet the teaching positions I was offered were in the field of special education. There was a shortage of teachers in this field, and even when new teachers took the opportunity to teach students with disability, there were issues with their retention and attrition, resulting in a teacher shortage. I largely attribute the difficulty in filling teaching positions within special education, to the negative perception of disability resulting in biases, stereotypes and misconceptions. This negative perception of disability was evident in statements regularly made by teachers within general education, such as ‘I could never teach kids like that’, or ‘You deserve a medal for the work you do’.  I am now aware that these statements are a form of ableism, which is the belief in the superiority of non-disabled people, and they objectify and devalue students with disability. Ableism is a system of power rather than one person’s belief and it is deeply entrenched within our society.

I taught students with disability in several segregated settings over many years. Initially I had no training in special education and limited exposure to people with disability beyond my family. Consequently, I lacked confidence and knowledge, and I looked to older teachers and teaching assistants as mentors. The mentors were passionate about their work and committed to their students. Segregated schools were considered by many parents and the wider community to be safe, supportive places with staff who were nurturing and caring. With the benefit of hindsight, I am now aware that students with disability were viewed through the medical model of disability. This is where disability is considered to be a tragedy, evoking pity and charity. The staff within these segregated settings were well-meaning and deeply cared about their students. On numerous occasions I overheard comments about students being ‘angels in disguise’, and how the non-disabled could learn from them. The idea that the role of disabled people is to teach others is problematic as it denies the experience of humanity where disabled people can be as flawed as the rest of us. This notion creates a divide between ‘us’ and ‘them’.

Staff often talked about the moral impetus for their career choice in emotive language, yet, this served to undermine the empowerment of students within the school. They utilised language that portrayed disabled students as helpless and dependent on non-disabled teachers and assistants, and I absorbed these beliefs. For example, it was not uncommon for students to be compared to babies or toddlers, such as ‘…he is just like a two-year old’ or ‘…she is like a baby and will need to be looked after for the rest of her life.’ This infantilisation also impacted on students’ human rights. While the students were taught about hygiene (brushing hair and teeth), they were usually denied lessons about sexuality with the misguided belief that they would never have a partner or experience intimacy. When students excelled beyond the low expectations that were set for them, this was considered inspirational. This false binary between tragedy and inspiration was taken for granted that it was the natural way of thinking about disability, yet it failed to acknowledge the structures within our society that privilege non-disabled ways of being and oppress people with disability.

I gave birth to my first child five years into my teaching career, and she was diagnosed with severe, multiple disabilities. My daughter completely changed the way I viewed disability. I read widely on disability and education, obtained information from carer support groups and completed several degrees in this area, culminating with a doctorate that researched disability and education. I educated and empowered myself in order to be the best advocate I could be for my daughter.  I was exposed to the notion of inclusive education and I enrolled my daughter within a general education setting when she began school. It was a very successful placement with a dedicated teacher and assistant and school community who were committed to inclusive education. I largely attribute the success of this placement due to living in a country town that did not provide suitable segregated education placements. Instead, the general education system embraced students with disability. However, after a few years at this school, my daughter developed a number of medical issues related to her disability, and this resulted in my family’s decision to relocate to a metropolitan area. The complexity of her care meant that for a period of time my daughter was largely excluded from education. However, an initiative in South Australia led to the opportunity to attend school with a registered nurse and my daughter was enrolled in an integrated setting. Integration refers to the placement in an existing mainstream educational school with the understanding that the student with disability needs to adjust to the way education is provided to non-disabled students. Within the integration model there may be minor changes such as a ramp built to access the building, but these are additions to the way education has always been provided. There is no transformation of education or sense of connectedness and belonging. While my daughter’s teachers tried hard for this to be successful, it required systemic change from the top. As this was not forthcoming, my daughter and I discussed the issue and I moved her from the integrated setting to a disability unit that was segregated from her peers without disability. Her teachers were lovely and it was a form of respite from the hard work involved with advocating for inclusive education.

I’ve often reflected on whether this decision to enrol my daughter in a segregated school was in her best interest at that point in time. And each time I critically examine this choice, I realise it was the only way of supporting her needs at that point in time. I’m often asked by parents about the decision they are forced to make regarding enrolment for their child in a segregated placement or within general education. General education is generally not accessible for all learners and cannot be assumed to be the same as inclusive education. Yet, it is often utilised as a proxy for inclusive education. General education was designed for the mythical ‘average student’. However, there is no such thing as an ‘average student’ as each student is a unique person with individual needs. In my daughter’s situation, an enrolment within general education would not have been successful as it was not inclusive. Inclusive education requires systemic reform embodying changes and modifications in content, teaching methods, approaches, structures and strategies in education to overcome barriers with a vision serving to provide all students of the relevant age range with an equitable and participatory learning experience and environment that best corresponds to their requirements and preferences. Inclusive education was not available for my daughter, and is still not available today for many students with disability.

Over time, I tried to convince myself that segregated education was in the best interest of all students, both for those with disability and those without. I returned to teaching in a segregated setting, and being surrounded by well-meaning teachers who believed in segregation, I stopped thinking critically on this issue. Segregated education was the path of least resistance, especially as the fight for inclusion seemed to be too hard. I saw teachers who believed in inclusive education become exhausted and disheartened in their attempts to implement change by themselves. These teachers failed because a school-wide, cultural shift is required for inclusive education to be successful, not superficial change in one classroom. And when solo attempts at inclusive education failed, it was invariably the concept and the teacher that was labelled as a failure, rather than examining the barriers within the school system that prevented inclusion.

When I completed a doctorate, I became aware of a long-standing, large body of research indicating that inclusive education results in improved outcomes for all students. I also realised that there is little to no evidence to support many of the collectively held beliefs about segregated education. These misguided beliefs include that some students are not candidates for inclusion due to the nature of their disability, or that students without disability are disadvantaged by the presence of students with disability. It was also at this point in time that I became aware of the social conditioning that I had unknowingly absorbed that shaped my deficit view of disability. And once I realised that difference was a social construct rather than a biological one, it freed me to think differently about my daughter’s place in the world, and the place of other disabled people, including students with disability within the context of education. Being confronted with these facts and my increased contact with people in the disability community who advocate for human rights, including the right to access education on the same basis as their peers, has helped to shift my stance.

Another significant shift in my fight for inclusion and human rights for disabled people was when my disabled brother died from neglect after his disability supports were accidently removed. This experience was shocking, but what I found unbelievable was the manner in which my brother’s death was dismissed by those with power to make sure that a death like this never occurred again. Consequently, I am a now a disability advocate who fights for human rights in the field of disability so our society is safe. And school is one of the greatest forces in socialisation. It plays a vital role in ensuring our society is welcoming for disabled people through inclusive education. When schools send a clear and consistent message that people with disability are valued in our society, and seek to empower students with disability to have agency in their own lives, it is a first step towards inclusion. Inclusive education will lead to a more harmonious society where everyone will benefit.

The post My Journey From Special to Inclusive Educator appeared first on Inclusive Education Planning.

1. Inclusion is about being really safe in a safe environment, and special schools are much safer than the mainstream.

2. Inclusive education works when students with high needs have one-to-one support with an assistant to access the mainstream.

3. Inclusion is a continuum of placements from mainstream through to special school placements.

4. Not all students can be included in the mainstream.

5. Special education is inclusive because if special schools did not exist many children would not receive an education.

These responses indicate the lack of consensus about the definition of inclusive education as they not aligned with the universal definition, which is explained further on.

Why is the term ‘inclusive education’ misunderstood?

While every teacher has heard of the term ‘inclusive education’, it is a philosophy that is greatly misunderstood. One of the reasons for the lack of clarity about the meaning of inclusive education is that it was not until 2016 that a specific, universal definition of inclusive education was agreed upon. Consequently, there are numerous and competing definitions of inclusive education. Further complicating this is that Australian domestic law varies in part from the universal definition.

So far, Queensland is the only Australian state or territory to develop a policy on inclusive education. This policy was implemented in 2018, and within it, inclusive education is defined in the following way:

Inclusive education means that all students can access and fully participate in learning alongside their similar-aged peers. Teaching and learning strategies are adjusted to meet students’ individual needs. Inclusive education encompasses all aspects of school life and is supported by culture, policies, programs and practices.

Queensland’s policy on inclusive education could provide a model for other states and territories. However, there is a strong tradition of segregated education in Australia and limited awareness of what inclusive education is and the benefits of inclusive education. Most teachers, assistants and parents of children with disability have never seen an inclusive school. Instead, what is thought to be inclusion is actually integration where students with disability are placed in mainstream schools without significant changes to ensure that students with disability have a sense of belonging.

There are a number of teachers who have worked hard to ensure their classrooms are inclusive for students with disability, but often these initiatives are driven by dedicated individuals rather than being the result of a systemic change within our education system. The lack of a consistent and universal definition has created uncertainty about what inclusion is and has resulted in difficulties implementing inclusion in both policy and practice.

Inclusive Education as an International Concept

The first framework for inclusive education was developed in 1994 in Salamanca in Spain. Prior to this event there had been a lot of work in the human rights space to address the problem of the exclusion of students with disabilities from school systems. Exclusion from school is a part of broader human rights abuse. The Government of Spain in co-operation with the United Nations Educational, Scientific and Cultural Organization (UNESCO) met with representatives of 90 countries, including Australia, at the World Conference on Special Needs Education: Access and Quality. The aim of this conference was to promote inclusive education and the end result was the Salamanca Statement and Framework for Action on Special Needs where inclusive education was described as the overarching philosophy of education for all:

The fundamental principle of the inclusive school is that all children should learn together, wherever possible, regardless of any difficulties or differences they may have. Inclusive schools must recognize and respond to the diverse needs of their students, accommodating both different styles and rates of learning and ensuring quality education to all through appropriate curricula , organizational arrangements, teaching strategies , resource use and partnerships with their communities. There should be a continuum of support and services to match the continuum of special needs encountered in every school .

The Salamanca Statement led to change in policy and practice regarding the education of students with disability, but because inclusive education was not clearly defined it resulted in a wide range of meanings of inclusion. Australia was an early signatory to the Salamanca Statement, but struggled to enact the recommendations within the document.

The United Nations Convention on the Rights of Persons with Disabilities

In 2006 the United Nations passed the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). Article 24 of the UNCRPD states that children with disability have the human right to be educated within general education with their non-disabled peers. The UNCRPD envisages the closure of segregated schools internationally. Italy was the first country to close segregated schools in 1977. Sweden has the majority of students in general education, with a small number of special schools. New Brunswick in Canada introduced inclusive education policies in 1986 and has no segregated settings. However, in Australia, there are many examples of integration but not inclusive education.

Australia ratified the UNCRPD in 2008. This ratification prompted analysis of the legal status of people with disabilities and led to reform in the delivery of supports. Signing a convention indicates a commitment from a country to work towards implementation but is not yet legally bound by the document. Ratification, on the other hand, indicates that the government is committed to implementing and complying with the convention. Hence, Australia has an obligation to implement the UNCRPD.

In 2016, a document known as ‘General Comment 4’ was adopted to Article 24 within the UNCRPD. This was the first time there was a clear, straightforward international definition of inclusive education. General Comment 4 clarifies what inclusive education is and outlines the obligation to provide inclusive education. Here is a section of General Comment 4:

The right to inclusive education encompasses a transformation in culture, policy and practice in all formal and informal educational environments to accommodate the differing requirements and identities of individual students, together with a commitment to remove the barriers that impede that possibility.

One of the most important aspects of General Comment 4 is how inclusive education is defined by what it is not. This was an important step as it was the first time that inclusive education was simply and clearly articulated.

Exclusion occurs when students are directly or indirectly prevented from or denied access to education in any form.
Segregation occurs when the education of students with disabilities is provided in separate environments designed or used to respond to a particular impairment or to various impairments, in isolation from students without disabilities.
Integration is the process of placing persons with disabilities in existing mainstream educational institutions with the understanding that they can adjust to the standardized requirements of such institutions.[1]
Inclusion involves a process of systemic reform embodying changes and modifications in content, teaching methods, approaches, structures and strategies in education to overcome barriers with a vision serving to provide all students of the relevant age range with an equitable and participatory learning experience and the environment that best corresponds to their requirements and preferences. Placing students with disabilities within mainstream classes without accompanying structural changes to, for example, organization, curriculum and teaching and learning strategies, does not constitute inclusion. Furthermore, integration does not automatically guarantee the transition from segregation to inclusion.

Lack of Alignment Between Domestic and International Human Rights Instruments

Despite ratifying the UNCRPD, Australia still provides segregated education for students with disability. The enrolment of children with disability in segregated settings has increased over time rather than decreased. Australia claims to meet the obligations within the UNCRPD through the Disability Discrimination Act (1992) and the Disability Standards for Education (2005). However, Section 45 of the Disability Discrimination Act (1992) allows for the establishment of segregated programs for students with disability, and such arrangements are called ‘special measures’. Therefore, segregated education in the form of disability units, special schools and classes are lawful in Australia, which remains an issue of debate. Inclusive education is educational policy rather than law in Australia, and there is a lack of a national approach with each state and territory having their own policies.

Gatekeeping

Gatekeeping is where parents or guardians are discouraged from or refused enrolment of their child with disability into general education. Gatekeeping may be where a school only offers part-time enrolment or they claim that the school does not have the facilities or access to funding to meet the child’s needs and so they direct the parents or guardians to a segregated school or suggest home-schooling. Gatekeeping is illegal under Section 22 of the Disability Discrimination Act (1992) which states that an educational authority cannot discriminate on the grounds of disability:

• by refusing or failing to accept the person’s application for admission as a student; or
• in the terms or conditions on which it is prepared to admit the person as a student.

Schools are able to manoeuvre around the legal obligation to accept an enrolment of a child with disability through the concepts of ‘special measures’ and ‘unjustifiable hardship’. Section 45 of the Disability Discrimination Act allows for segregated educational settings and research indicates that some schools suggest to parents/ guardians that a special school offers greater opportunities. This is gatekeeping disguised as benevolence. Many parents/ guardians act on this advice rather than enrolling their child in a school where they are not wanted. As well, under the Disability Standards, failure by an education provider to make reasonable adjustments is not unlawful if to do so would impose unjustifiable hardship on the provider. Hence, this is another gap in the legislation that allows a dual system of segregated/ mainstream education to continue.

Key Takeaways

The UNCRPD affirms the rights of people with disability.

The most robust definition of inclusive education is within the UNCRPD.

It took until 2016 for human rights instruments to decide upon a clear, simple and precise definition of inclusive education.

Australia has not yet complied with the obligations to inclusive education within the UNCRPD.

Australia draws on many definitions of inclusive education rather than the one universal definition by the UNCRPD.

Many teachers and schools are unaware of the definition of inclusive education in the UNCRPD.

The Disability Discrimination Act (1992) and Disability Standards for Education (2005) contain clauses that legally permit segregated education for students with disability. This is at odds with the definition on inclusion within the UNCRPD.

                        [1]   See A/HRC/25/29 and Corr.1, para. 4, and United Nations Children’s Fund (UNICEF), The Right of Children with Disabilities to Education: a Rights-based Approach to Inclusive Education (Geneva, 2012).

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This blog is a comparative analysis using a disability lens. In particular, it examines the way blindness is portrayed by a non-disabled author and by a blind writer. The first text is the ever-popular, Pulitzer Prize-winning, historical novel All the Light We Cannot See by Anthony Doerr, an American, non-disabled writer. This novel was published in 2014 and is a story about two children on opposites side of the war. The novel opens with Marie-Laure aged six, living with her father in Paris, France, in 1934. Marie-Laure slowly loses her vision from bilateral cataracts, and the doctors inform Marie-Laure’s father that her condition is irreparable and permanent. When the Nazis occupy Germany, they flee to the French coastal city of Saint-Malo to live with Marie-Laure’s uncle, taking with them a valuable diamond called the Sea of Flames. Eventually Marie- Laure meets a German orphan boy named Werner Pfennig, who is pressured into service by the Nazi army. There is another minor character named Frederick in the novel who has a vision impairment. The inclusion of disabled characters has been widely praised, yet, some question whether the use of blindness as a metaphor for lack of perception and understanding reinforces negative stereotypes.

The second text is Selected Epistles by Olivia Muscat from the anthology Growing Up Disabled in Australia, edited by Carly Findlay. Muscat is a writer and disability arts advocate who lives in Australia and is blind. Muscat’s memoir was chosen as a comparative text because it is an account of her lived experience of blindness that can be read in juxtaposition to Marie-Laure’s experience of blindness. As well, it has been chosen to showcase an Australian disabled writer in the #OwnVoices genre.[1] Muscat has written about how her blindness is perceived and how negative or positive perceptions of her disability either limits or opens opportunities. Muscat describes herself on her website as constantly yelling at ableist nonsense. Ableism is similar to other isms, such as racism and sexism, as it is negative prejudgement to maintain power and control. Ableism has exclusionary and harmful effects on disabled people. While physical barriers such as ramps are easy to address, attitudinal barriers created by social conditioning are much more difficult to change. This comparative analysis is a way of countering social conditioning by encouraging reflection on the representation of blindness within the literature and the quality of that representation.

[1] #OwnVoices refers to literature that features a marginalised perspective that has been written by someone who shares the same marginalised characteristic. Unfortunately, the hashtag has been utilised to gatekeep disabled authors from writing in other genres, and as a result, some publishers have now abandoned the use of the #OwnVoices hashtag.

[2] Mitchell, D.T & Snyder, S.L. (2001) Narrative Prosthesis: Disability and the Dependencies of Discourse Ann Arbor: University of Michigan Press

[i] Wells-Jensen, S. (2016) On Blindness and Portrayal of Marie-Laure in All the Light We Cannot See in Lighthouse Interpoint and The Toast

[ii] Ableism is the belief in the superiority of the non-disabled life.

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Adrienne Rich, Blood, Bread and Poetry: Selected Prose, 1979-1985

Over time the range of literature that includes diverse characters has rapidly increased, largely due to movements such as We Need Diverse Books in the United States. Now the focus has moved from literature about diverse characters, to the authors behind the books. The #OwnVoices movement started with Dutch author Corinne Duyvis in 2015. She created the hashtag for literature that features a marginalised perspective that has been written by someone who shares the same marginalised characteristic.

There is a long history of authors whose abled identity provides them with power, privilege and social status, who write outside their own experience. A few do it well, but many do not. Within the disability community there is concern when authors who do not have lived experience of disability (this is defined as direct, personal experience), appropriate and misrepresent disabled people’s experiences, and consequently reinforce ableist culture and practices. We should not necessarily avoid or cancel literature written by non-disabled people, but we should privilege disabled people’s understanding of their own lives. Literature by non-disabled authors can be utilised to promote critical analysis of the portrayal of disabled people, which can both reflect and shape societal attitudes. Focussing on these portrayals, then, becomes a means of examining, and in some cases opposing, ableism and discrimination.

Comparative analysis of literature, that is a close reading of two texts for their similarities and differences, provides insight into issues that may not be captured if each text were read separately. The comparative perspectives within non-fiction by disabled authors (#OwnVoices literature), and the fiction of non-disabled writers, can be utilised to examine the discourse about difference, challenge deficit ideas about disability and promote social justice. The first step is to locate a popular text by a non-disabled author (these are plentiful) that includes a disabled character. The next step is to locate #OwnVoices literature by someone with the same disability as the character in the popular text. This blog compares Wonder by R.J. Palacio, an American non-disabled author, with Ugly, by Robert Hoge, an Australian who has facial difference. It should be noted there are numerous options for pairing, but these texts have been chosen to introduce the work of #OwnVoices literature as well as to redirect teachers to local writers rather than drawing on well-known authors from overseas.

Wonder is a best-selling American novel by R.J. Palacio about a child named Auggie who has facial difference.  R.J. Palacio probed into unknown territory by relying solely on her imagination to write about Auggie. Palacio’s inspiration for Wonder came from a visit to an ice cream shop where she had a chance encounter with a little girl with facial difference. When her son began crying hysterically in response to seeing this girl, Palacio panicked and fled from the shop. The novel Wonder is the outcome of this chance encounter, and perhaps her way of assuaging her guilt for not handling the situation better. Many argue that ableist themes are present in Wonder, although others, including Carly Findlay who has facial difference, claim that it is an accurate depiction of what it is like to live with facial difference.

In comparison, Ugly (there are two versions, one for younger readers and one for older readers, this blog analyses the former) is an #OwnVoices text by Robert Hoge about his childhood in Australia from his birth up to the age of 14 years of age. Robert’s story is a genuine, but at times harrowing, account of his experience of the barriers he experienced due to his facial difference and physical disabilities. It is a great book to use in the classroom context to introduce issues relating to disability such as inclusion, discrimination and unconscious bias.  Ugly has significant advantages over Wonder, primarily because Robert is writing about his lived experience, and it is set in Australia. Robert is able to provide a perspective about disability that Palacio cannot.

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1. Special schools and classes can be inclusive

A few years ago, a special school received an award for inclusion. The fact that a school segregating students with disability from their non-disabled peers was considered inclusive, and received an award for inclusion, demonstrates the lack of consistency with the definition of inclusion. The international and most authoritative definition of inclusive education is within the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). Australia ratified the UNCRPD in 2008. A key factor of inclusive education is that students with disability learn alongside their non-disabled peers.  While placement within the mainstream system without socially-just transformative changes is not inclusion, but rather is integration, placement is an important aspect. Integration is a process of placing students with disabilities in existing mainstream educational institutions, as long as the former can adjust to the standardised requirements of schools. Hence, placement within mainstream education is only a starting point for inclusion. However, segregated settings such as special schools are not inclusive. Expanding the definition of inclusion is disingenuous as it obscures the practice of exclusion.

2. Offering a continuum of placements, including special schools, is part of parental choice

The notion of school choice is regularly offered as a rationale for maintaining segregated settings (segregated refers to special schools, special classes, disability units and Flexible Learning Options). But do parents of children with disability really have a choice in school placement for their child? At the moment, the ‘choice’ is between support in a segregated setting or little to no support in a mainstream setting. Consequently, demand for segregated settings by parents of children with disability has increased exponentially due to the dilemma that students with disability often do not receive effective support within mainstream settings. Consequently, special schools and classes currently have long waitlists. Yet, research is unequivocal that inclusive education results in improved academic and social outcomes for all students, including those with disability. However, the evidence on the benefits of inclusion has not filtered through to our society. Complicating this issue is that very few schools offer inclusive education. Inclusive education requires adequate resourcing, capacity development of staff and a cultural shift in expectations, language and beliefs. Parents will continue to advocate for their child to be enrolled and funding to be directed to segregated settings until they have some degree of certainty that their child will be valued in inclusive settings. While parents push for segregated education, it will continue to be offered, perpetuating the dual system of education by reducing funding and impetus for inclusive education. Should we prevent parental choice for segregated education by phasing out special schools and classes? No, not until a robust system of inclusive education is established where parents of children with disability can enrol their child in school with the assurance they will receive high-quality instruction, interventions and supports that enable them to be successful.

3. Inclusive education costs more than the current system

An inclusive education system is not more expensive than our current parallel system of mainstream and special education. Research indicates that there are cost benefits with an inclusive model (Anderson & Boyle 2020). Also, there are long term cost savings as students with disability educated in inclusive schools are more likely to engage in further education, live independently and obtain post-school employment (Haber et al., 2016). While inclusive education requires investment in a range of areas such as teacher and assistant professional development and accessible classrooms and learning materials, the specialist knowledge, skills and resources currently in segregated settings would be deployed toward inclusive education, thus saving considerable money. This streamlined approach would eliminate the high costs of running parallel systems and is a much more efficient and effective use of funds. Simultaneously, this redirection of funding would improve academic and social outcomes for all students as everyone benefits from inclusive education. According to Professor Suzanne Carrington in her submission to the Disability Royal Commission in 2020, the cost of building a special school for 80 students is approximately 27 million. Imagine if that amount of money was made available for education in mainstream schools!

4. The inclusion of students with disability negatively impacts non-disabled students

The misconception that students without disability are negatively impacted by the presence of students with disability is incorrect. All students, both those with disability and those without, have improved academic and social outcomes in inclusive settings. There are also significant benefits for schools, teachers, assistants, families and the community. It is important to add that these benefits only exist when schools are genuinely inclusive. There is little to no benefit for non-disabled students when practices are labelled ‘inclusive’, but in reality, they are not. These practices include placing students with disability in general education and expecting them to adapt to the standard practices within the classroom (this is called integration), or when the proportion of students with disability within one class is greater than the proportion of people with disability within the wider population.

5. Students with disability are bullied in mainstream schools

While many parents favour inclusive education, some, particularly those of children with severe disabilities, prefer segregation as they believe it to be a protective setting that is better placed to meet their child’s needs. Yet, bullying of children with disabilities, particularly those with autism, occurs not only in mainstream settings but also in those that are segregated (Glumbi & Zunic-Pavlovic 2010). Hence bullying is a problem in all schools rather than an isolated problem within mainstream schools. It is vital that bullying be addressed regardless of the location where it occurs.

6. Inclusive education makes unrealistic demands on teachers

The greatest demand in moving to an inclusive education model is making the paradigm shift from the current education system to an inclusive one, but this is not an unrealistic demand. While the paradigm shift is challenging because we are all socially conditioned to view segregated education as the norm, once an inclusive model is embraced and supported within a whole school approach, the teaching demands are the same. Hence inclusive education is not harder; it is just different.

7. There are some students with disability who cannot be included within general education

This myth is founded on the belief that students with disability, particularly those with intellectual disabilities, cannot learn or should be restricted to a life skills curriculum. However, research indicates that students with disability have greater academic and social outcomes in inclusive settings (De Bruin 2020). Every student should be provided with the chance to learn alongside their peers without requiring proof they can learn. Unfortunately, many students with disabilities often need to prove their competence to receive a placement within general education. Thus, placement decisions are usually made on assessments and presumptions, which are flawed. It is impossible to accurately assess the intelligence of someone unable to communicate what they know, which is often the case for students with intellectual disability or autism. With appropriate adjustments, supported decision-making and access to a robust communication system, students with disability, including students with severe intellectual disability, can flourish in inclusive settings.

8. Students with complex communication needs require functional communication skills taught in a separate classroom

All students need the opportunity to access, participate, and progress in the general education curriculum. Yet, many people have minimal expectations regarding the communication competence and academic ability of students with complex communication needs. Some teachers believe that students with complex communication needs require a functional communication program taught by special educators in a segregated setting. Functional communication programs often focus on a restricted vocabulary that is limited to requests for wants and needs. Students with complex communication needs who do not speak tend to be congregated together in segregated settings, thus limiting exposure to rich and vibrant language. A much better approach is to provide a robust communication system within a dynamic classroom where the student with disability can interact with their non-disabled peers. A robust communication system is one that presumes competence and provides access to a rich vocabulary that can be used long-term rather than a restrictive vocabulary now. Inclusive settings provide students with complex communication needs the best chance to learn and thrive.

9. Many teachers do not have the skills to teach students with disability

Some people believe that special educators are the only ones with the skills and knowledge to teach students with disability. This false belief is further complicated by an overwhelming 63% of regular teachers feeling unprepared to teach students with disability (Sharma 2018). These beliefs stem from our current dual system of special and regular education. Special education is based on the medical model of disability, where disability is viewed as a deficit that needs to be remediated. This approach is in opposition to inclusive education, which is informed by the social model where disability is created by barriers within society. The beliefs, practices and attitudes within special education reinforce the systemic barriers and social exclusion of students with disability, along with the idea that ‘special’ students require special educators. However, teachers do not need qualifications in special education to teach students with disability as all teachers are qualified to teach all students through the completion of an undergraduate degree in education. The Australian Professional Standards for Teachers are very clear that all teachers are expected to cater for students of all abilities. University teacher education courses are expected to address four key areas:

(i) differentiating teaching to meet the specific learning needs of students across the full range of abilities,

(ii) supporting the learning of students with disability,

(iii) supporting student participation and engagement, and

(iv) managing challenging behaviour

Hence, as schools move away from identifying problems within their students and towards identifying barriers to learning, they will be more inclusive. The specialist knowledge, skills and resources currently in segregated ‘special’ education schools also need to be mobilised to support regular teachers to implement inclusive practices in their classrooms.

10. Students with disability are inspirational

Sometimes students with disability are represented as inspirational characters with superpowers to counter deficit ideas about disability. However, representing students as heroic or extraordinary just because of their disability is ‘othering’; they are treated intrinsically different from everyone else. The superpower approach erases differences amongst individuals and can lead to unhelpful stereotypes, such as all students with autism hold savant mathematics skills. In reality, many students with autism have an average ability with mathematics, just like other students. If teachers believe the superpower myth, they may be less likely to provide the support and accommodations that students require. A better approach is to consider students with disability as ordinary students.

Anderson, J., & Boyle, C. (2020). “Good” education in a neoliberal paradigm: Challenges, contradictions, and consternations. In C. Boyle, J. Anderson, A. Page, & S. Mavropoulou (Eds.), Inclusive education: Global issues and controversies (pp. 35–57). Leiden: Brill Publishing

De Bruin, K. (2020) Does inclusion work? in Inclusive Education for the 21^st Century: Theory, Policy and Practice Crows Nest NSW: Allen & Unwin

Glumbic, N. & Zunic-Pavlovic, V. (2010) Bullying Behaviour in Children with Intellectual Disability in Procedia-Social and Behavioural Sciences Vol. 2 No. 2

Haber, M.G., Mazotti, V.L., Mustian, A.L., Rowe, D.A., Bartholomew, A.L., Test, D.W. & Fowler, C.H. (2016) What works, when, for whom, and with whom: A meta-analytic review of predictors of postsecondary success for students with disabilities’ in Review of Educational Research Vol. 86 No. 1

Sharma, U. (2018). Preparing to teach in inclusive classrooms in Oxford Research Encyclopedia of Education.

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‘We already have an inbuilt education system that we carry around with us, and from a young age, we develop our very own approach to learning. The concept of school just doesn’t make sense….. We do not need the interference of an outsider telling us that we should do away with our perfectly sound and effective learning style, in favour of some second-rate, half baked idea, lower in quality than our method, concocted by the mind of another. It’s patronising and insulting and quite frankly delusional.’

Harry’s concept of an inbuilt education system is referred to as ‘unschooling’. Unschooling is considered to be a lesson and curriculum free implementation of home-schooling. It is focussed on choice and self-direction and is in opposition to explicit instruction. Unschooling encourages children to initiate activities and explore their personal interests. But the philosophy of unschooling is not new.

The roots of the unschooling movement can be traced back to the 18th-century philosopher Jean-Jacques Rousseau. This philosophy then rose to prominence again in the anti-establishment theories of the 1960s proposed by John Holt, the American author of How Children Fail, Escape from Childhood and How Children Learn. A more recent unschooler is Peter Gray, who published the book ‘Free to learn’ in 2013. He is a Research Professor of Psychology at Boston College, specialising in evolutionary perspectives on psychology. Peter’s son had a negative experience in school, and this encouraged Peter to seek alternate education routes, and he finally came across the notion of unschooling. Peter believes we can learn from hunter-gatherer societies about the best way to educate young people. In 2019 a film was made about unschooling to encourage parents to embrace this approach to education.

But does unschooling work?

While there is dissatisfaction with the current education system and many students with disability struggle in schools that are not welcoming, unschooling is not the answer. There is a lack of empirical data on unschooling, but the science of learning directly opposes the unschooling movement. Science tells us that for all students to learn they require:

1. Explicit instruction rather than discovery learning.
2. To put effort into learning, and children will avoid effort if offered the choice to do so.
3. To be introduced to knowledge and information they are unaware of.

Hence, unschooling cannot be successful as it directly conflicts with the strong evidence that we have about how children learn. The philosophy of unschooling has confused two types of knowledge, biologically primary knowledge, which we learn without conscious effort, and biologically secondary information, which is slow and requires effort (Geary 2007). Examples of the former include listening, speaking, recognising faces and basic social skills, while the latter includes academic activities such as literacy and numeracy. When our society moved from hunter-gathering to a more advanced way of living, it became essential for children to be taught biologically secondary information as they are unable to learn this information by themselves.

In a recent interview with Peter Gray, he discussed the free school  Sunbury that was established on the unschooling philosophy. While he claimed that every child at Sunbury learnt to read without formal instruction, he also stated that Sunbury was not successful for students with disability. So if you a parent of a child with disability who is considering this approach, the evidence tells us that your child has a much better chance of obtaining an education at a traditional school than through unschooling.

Geary, D.C. (2007) Educating the Evolved mind: Conceptual Foundations for a Evolutionary Psychology in Carlson, J.S & Levin, J.R. (Eds) Psychological Perspectives on Contemporary Educational Issues Greenwich: Information Age Publishing

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In contrast, Martha Albertson Fineman (2017) developed the theory of vulnerability which defines vulnerability as ‘universal and constant’, and it is ‘manifested differently in individuals, often resulting in significant differences in position and circumstance.’ All people will experience some form of vulnerability within their lifetime, with some experiencing vulnerability more acutely than others. Hence, vulnerability is part of the human experience; it is not something that only occurs to particular groups of people. Albertson Fineman’s redefinition of vulnerability in many ways resembles the distinction between the medical and social model of disability. The medical model views disability as a problem that belongs to the person, while the social model considers that disability is created by barriers in our society. Barriers can be structural, such as the lack of ramps to facilitate building access, as well as attitudinal. Yet, the realisation of human rights, which are fundamental rights and freedoms that each person has by virtue of being human, require external barriers to be removed so people with disability can participate in society on an equal basis with others.

Concepts that underpin the traditional notion of vulnerability, such as capacity/ incapacity, autonomy/ paternalism, equality/ inequality and empowerment/protection are presented as stark binaries with no in-between, which further complicates the issue of supporting people with disability. No-one fits neatly into these socially constructed binaries as people are either burdened with low expectations as a person’s strengths are ignored, or are unable to access the supports they require as their challenges are ignored. For example, cognitive capacity is considered to be an ability that a person either has or does not have, rather than being a continuum where it can fluctuate for all of us at any given time. Students considered to have ‘incapacity’ due to intellectual disability often experience segregation from their non-disabled peers for education, despite four decades of research that inclusive education results in improved outcomes for all students (Cologon 2019). Once a student experiences segregation, it often establishes a lifetime of segregation, which increases the risk of abuse, violence, neglect and exploitation of people with disability (Jackson 2008). The opposite occurs when a student with disability is considered to have capacity or cognitive ability, is placed within general education, rather than inclusive education, without the supports and accommodations they require to experience success. This type of placement, where the student must adapt to the classroom requirements, is called ‘integration’. Yet, when students struggle in this context, it is often the student’s disability that is blamed rather than the environment. The answer to this dilemma is to provide inclusive education, where strengths and challenges of all students, including students with disability, are acknowledged and addressed.

The term ‘vulnerable’ in the traditional sense is problematic because it can lead to disempowerment, condescension and paternalistic interventions with forms of social control that are harmful to people with disability. For instance, research indicates that people with disability are four to ten times more likely to experience sexual assault compared to the general public, yet to ‘protect’ students with disability, they are often segregated from their peers (Frawley & Bigby 2014). Within segregated education settings, students with disability are less likely to receive education about sexual health, feelings and behaviours that are readily provided to their non-disabled peers (Murray 2019). This restrictive approach may stem from misguided and harmful beliefs that students with disability are a ‘forever child’ or are asexual and will never experience an intimate relationship. The denial of supported decision making regarding sexual expression is harmful and could lead to inappropriate sexual behaviours or deny students the vocabulary to recognise and label sexual assault. 

Also, segregation can place people with disability at risk of abuse as they may not have people around them to notice if something is wrong or to turn to for help when needed. However, when developmental safeguards (Kendrick 2005), which are the informal supports of being a part of a community are utilised, abuse is much less likely. Developmental safeguarding requires connectedness between people with disability and their community. Through connectedness, caring relationships can develop for the mutual realisation of needs and possibilities. Being cared about is vital for every person. The term ‘cared about’ refers to ‘feeling and/or being known and liked; on attentive noticing (such as providing opportunities that show me you know I am capable of something); and mutuality or a sense of reciprocity.’ (Robinson, Graham, Fisher, Neale, Davy, Johnson & Hall 2020). The term ‘cared about’ is utilised rather than ‘cared for’ as the latter can imply the physical practice of hands-on care rather than relational caring.

The greatest danger of the traditional concept of ‘vulnerability’ is that there is almost no critique or commentary of the environment or situational factors that expose vulnerability. The label of ‘vulnerable’ is indicative of societal failure rather than an individual condition and could unfairly disadvantage students with disability. Yet, inclusive education is a developmental safeguard for students with disability as all students learn together and learn respect for diversity. Inclusive education avoids stark binaries by acknowledging that we all have needs and strengths. Inclusive education acknowledges diversity as the norm rather than the exception.

References

Albertson-Fineman, M., 2017, Vulnerability and Inevitable Inequality, 2017, Oslo Law Review, vol. 4, p 133-149

Cologon, K. (2019) Towards inclusive education: a necessary process of transformation. Clifton Hill, VIC: Children and Young People with Disability Australia (CYDA).

Frawley, P, Bigby, C (2014) ‘I’m in their shoes’: Experiences of peer educators in sexuality and relationship education. Journal of Intellectual Developmental Disability 39(2): 167–176.

Jackson, R. (2008) Inclusion or Segregation for Children with an Intellectual Impairment: What does the Research Say? Queensland Parents for People with a Disability 

Kendrick, Michael J. (2005) ‘Self Direction’ In Services And The Emerging Safeguarding and Advocacy Challenges That May Arise: A Discussion Paper For An Exploratory Study Session June 9, 2005, Hartford, CT., Hosted By The Connecticut Office Of Protection And Advocacy

Murray, B.L.( 2019) Sexual Health Education for Adolescents with Developmental Disabilities in Health Education Journal Vol. 78 Issue 8

Sally Robinson , Anne Graham , Karen R. Fisher , Kate Neale , Laura Davy , Kelley Johnson & Ed Hall (2020): Understanding paid support relationships: possibilities for mutual recognition between young people with disability and their support workers, Disability & Society, DOI: 10.1080/09687599.2020.1794797

This blog was written in collaboration with Dr Kerre Willsher

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‘Ugly’ is sometimes compared with ‘Wonder’, a best-selling American novel by R.J. Palacio about a child named Auggie who is also living with facial difference. ‘Wonder’ is better known than its Australian counterpart, presumably because in 2017 it was made into a movie starring Julia Roberts and Owen Wilson. However, ‘Ugly’ has significant advantages over ‘Wonder’, primarily because Robert is writing about his lived experience. R.J. Palacio probed into unknown territory by relying solely on her imagination to write about this topic. At the time of writing, she had never met anyone with facial difference. There is an unspoken rule in the disability community- before you create fictitious disabled people, get to know real ones. It is too easy to trivialise, misrepresent or stereotype disabled people. The way disabled people are represented in novels matters. Or better yet, leave stories about disability to those with lived experience. No amount of research can ever equate to lived experience and perspective.

Lived experience, that means direct experience of disability, is very important to the disability community. Lived experience of disability means that you have first- hand experience of disability rather than understanding specific disability perspectives from education or proximity to disability. Only someone with lived experience can tell you what it is like to walk in their shoes, to live with their disability and to experience disability-related barriers to social justice. Understanding disability, through teaching or allied health, is not lived experience, it is professional experience. The two should never be confused. Amplifying disabled voices is also important to the disability community. Consequentially, introducing your students to a book such as ‘Ugly’ which provides a first-hand perspective of disability, can help further the message of inclusion. But what is ‘Ugly’ about?

The story begins with how Robert sharing how he was born with a tumour across his face:

 …..jutted out from the top of my forehead and ran all the way down to the tip of where my nose should have been. It was almost twice the size of my newborn fist. It had formed early during my development and made a mess of my face, pushing my eyes to either side of my head. Like a fish. (pp 4-5)

Robert also had physical disabilities due to his ‘mangled’ legs, resulting in the need for prosthetic limbs:

The right leg was only three-quarters as long as it should have been and had a small foot bent forward at a very strange angle. The foot had four toes, and two of them were partially joined together. My left leg was even shorter and only had two toes. Both looked bent and broken. (p. 5)

Robert described his mother’s ‘pain and grief’ at giving birth to a ‘little monster’. The word ‘monster’ is confrontational, highly charged and provocative as it leads us to acknowledge that disability slurs are used against disabled people. In this scenario, as in others throughout the book, Robert utilises understatement to outline, rather than explicitly describe terrible events. It took Robert’s mother one week to see her son, who was in intensive care. Robert used his mother’s words from her diary to describe her reaction:

‘I didn’t feel anything for this baby’, she wrote in her diary. ‘I had shut off completely. I had made up my mind I was not taking him home’.

She packed her bags and left the hospital without me. (p.10)

Robert’s mother eventually decided to bring her son home, and she provided a loving, supportive home afterwards. However, it’s worth noting that disabled students reading this book may find it traumatic to read about parental rejection based on disability. The narrative of disabled people being a burden is a pervasive one in our society and must be countered at all costs. It would be helpful for students to be navigated through this part of the novel with a clear understanding that disabled people are valued members of our society and our schools.

One of the most disconcerting parts of the novel was Robert’s work experience in a Catholic high school. He described assisting in a classroom for a week, and it appeared to go smoothly until he was summoned to the principal’s office on the last day. The principal was a well-spoken, middle-aged woman and the encounter that followed was incredibly disturbing:

‘It would have been appropriate,’ she said, without a hello, ‘if we were warned before you came.’I had no idea what she was talking about.
‘Warned?’ I asked.
‘Yes, warned’, she said. She raised her voice slightly, like I was a kid in grade two. ‘About you.’
‘About me?’
‘When you arrived on Monday, we had to quickly swap the class you’d be in. You were supposed to work with the grade-two teacher.’I wondered for a second whether kids in grade two would be tested on how to spell the plural of ‘potato’. My next thought was that until we’d arrived, we were just names on a piece of paper anyway, so it couldn’t have been that hard to change. Then it dawned on me what she meant. She was talking about the way I looked. (pp. 188-189)

Robert described how he cried and apologised for his appearance, and the principal responded with the single word, ‘Good’,  as she dismissed the pain she had caused. While other instances of bullying occurred throughout the novel, these were by children whose immaturity and lack of understanding provides some explanation for their behaviour. However, in this situation, it was an adult in a position of authority, trust and respect. Principals hold the highest level of authority within the school by virtue of their position. There was an enormous imbalance of power misused by the principal to harm and bully a child. There is another hierarchy here- that of a non-disabled person rejecting and shaming a disabled person’s identity. This section of the novel will require support and guidance for students who have had traumatic or negative experiences with adults; however, it is also an excellent opportunity to reflect on power dynamics and student voice.

In the final chapter of ‘Ugly’, fourteen-year-old Robert is faced with the decision of whether to go ahead with another serious operation to improve his appearance. This time Robert’s parents allowed him to decide for himself rather than making the decision on his behalf as they did in the past. He carefully considered the high risks involved with this operation, including losing his vision and even death. Robert thought about the pain and distress of previous surgery and decided not to go ahead. Instead, he decided to own his face. He reclaimed a sense of worth and pride, along with a constructive acceptance of his disability. I highly recommend this book.

More Resources

Ted Talk ‘Own Your Face’

Teacher Notes

https://www.hachette.com.au/content/resources/9780733634338-teachers-notes.pdf

Robert Hoge Website

https://www.roberthoge.com/

An interview with Robert Hoge

https://www.npr.org/sections/health-shots/2016/09/04/492416833/ugly-a-memoir-of-childhood-deformity-and-learning-to-love-a-distinctive-face

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1. Check for disability stereotypes

A stereotype is a simplified generalisation about a particular group, in this case, disability.

Is disability merely used as a device, or as a metaphor for a character’s development or a substitute for what the author wanted to say? For example, blindness is often used as a metaphor for someone who lacks awareness. Metaphors and myths about disability are a barrier to effective inclusion.

Are the disabled characters portrayed realistically? Is disability overemphasised in the novel rather than revealing a real person with a balance of strengths and weaknesses?  Are disabled people portrayed as a burden, evil, superheroes, dangerous or saintly? Is disability presented as a part of who the characters are, rather than all that they are?

Does the portrayal of the disabled character differ significantly from non-disabled characters? People with disability participate in life in similar ways to non-disabled people. They may have careers, intimate relationships, have children, attend university and travel overseas. What texts often do not convey are external barriers to participation in life, and positive disability identities and the disability community. In particular, check the agency of the disabled character and whether they have a voice or are passive throughout the text.

• Check the message of the text

Does the book romanticise disability by undermining the reality of disability? Does it infantilise disabled people? Does it portray disabled people as inspirational?  If the key message of the book is that disabled people are inspirational because they have triumphed over their mind and body (so-called “inspiration porn”), or they should overcome their disability, then this is problematic.

• Check whether the text approaches disability from a social perspective

Is disability portrayed as the result of intrinsic factors or is the role of the environment in creating a barrier to access acknowledged? Is disability portrayed as a deficit or personal tragedy that must be fixed? Who has power and control in this text? The non-disabled people should not have all the power, take all the leadership decisions or make all of the decisions.

• Check the language and images used?

When students are continually exposed to normative ideas of beauty and ableness, it is damaging for all students, particularly students with disability. Language and images often serve to reinforce harmful messages about disability. Does the book contain positive language and images about disability? Or does it contain disability slurs? Also watch for negative language such as ‘wheelchair bound’, ‘confined to a wheelchair’, ‘afflicted with…’ or ‘suffering from…’.

• What is the author’s (and illustrator’s) experience of disability?

Is the author able to contribute positively to the disability community by sharing their lived experience of disability? If the author is a non-disabled person, is their disabled character presented authentically?

Resources

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