By Catia Malaquias
“Do you think Julius can go to the same regular school as his sister or should he go to … a … special … school?”
Julius, my second child, was born a few months earlier with Down syndrome and I was still trying to work out what this would mean for him and the rest of our family.
I will always remember how the man sitting at my kitchen table responded to the question I had just asked him:
“Of course Julius can go to the same local school. But if you choose to put Julius in a special school, I can’t work with you”.
The first part of what he said, was what I hoped to hear. The second part, I came to understand.
The man at my kitchen table was Darrell Wills, an educator and psychologist who is the driving force behind a Western Australian association called PLEDG, dedicated to supporting parents in advancing the education of children and young adults with learning disability on an inclusive basis.
Darrell’s details had been given to me at the end of an evening a few days earlier. I had arranged a dinner with the father of a friend who worked in the disability sector. The dinner conversation did not, as I expected, move to any planning or “tips” for Julius … but on leaving, Darrell’s name and contact details were scrawled on the back of a business card and the card was pushed into the palm of my hand. As it turned out, that was the most valuable “tip” I ever got.
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Darrell showed me recent international research that had found what he, with 40 years of hands-on experience already knew – that although students with disability tend to find a regular mainstream environment more challenging in the first years, their longer term academic and social outcomes exceeded those achieved in “special schools” or “special units” within mainstream schools.
Darrell, a passionate “inclusionist”, broke for me the assumption that “special” education was appropriate for a child with “special needs”. When in our initial discussion I found myself referring to “special needs”, Darrell interjected:
“Tell me what ‘special needs’ Julius has? I don’t think he has any. He has the same needs as any child … to be loved, fed, clothed, sheltered and educated – he might need a bit more help with having some of those needs met, but there is nothing ‘special’ about them, they are regular human needs.”
I still cringe whenever I hear someone say “special needs”.
And so that day we added ourselves to Darrell’s list of families, spread throughout the corners of Western Australia – families with whom he works tirelessly, assisting them with his insights and evidence-based strategies to support students’ learning and socialisation – as well as his wisdom and hard earned “life experience”.
In time, usually when Darrell was flat out somewhere working with a family to prepare their child for school or assisting a family with “including” their child within a regular school, I came to meet Darrell’s colleague, Dr Robert Jackson. Dr Jackson is an Adjunct Associate Professor of Education at Curtin University in Western Australia and a leading Australian academic in the area of inclusive education. He started out in the 1970s working as a nurse in an institution for adults with intellectual disabilities in rural New South Wales. What he saw and experienced set him in the opposite “inclusive” direction for the next 30 years.
Dr Jackson quickly came to see inclusive education in regular classrooms as minimising the likelihood of a child with disability becoming an adult segregated from broader society. He undertook a comprehensive review of all studies over a 40-year period that compared education outcomes for students with disability in segregated “special” versus regular education environments, and found that no study supported better outcomes in “special” settings.
I’ll let that sink in – if no studies have been able to show segregated education (and all its so-called “specialized” focus) to produce better outcomes than inclusive regular education, why are students with disability being encouraged and even pushed into “special” settings?
This reminds me of the story of the Emperor’s New Clothes – as parents we are often “sold” the myth that “special” is better and we are too reluctant to question it because it is being offered up as legitimate by those we trust and expect to know – but who, in reality are often self-interested or uninformed – the governments that have invested in special education, the educators in mainstream schools who see students with disability as “burdens” and conveniently recommend they go somewhere else more “special” and the medical professionals who give advice on these matters, despite the fact that medicine and education are not the same thing.
As parents we need to remind ourselves to ask, whenever a different or “special” path is suggested, “show me the evidence”. If a doctor today were to prescribe the outdated and discredited treatment of “blood-letting by leeches” we would immediately question their professional advice and its basis but when a professional educator “prescribes” outdated and misguided segregated education in the face of overwhelming evidence against its practice, why aren’t we questioning the basis of their “professional advice” in the same way? Similarly, we would not accept as “professional” the advice of an educator on the best way to treat an illness or medical condition – so why are we so ready to accept the advice of doctors and therapists in relation to what constitutes best educational practice for children with disability?
Dr Jackson also explained to me the propensity for a segregated “special” education pathway to lead to a segregated “special” adult life; how the “special school” more readily leads to the “segregated workshop” and the “group home”. I think that if we aspire for our children to lead full and free lives, in open employment and living and loving in the community on an equal basis with everyone else, we need to start it out that way – demand and expect inclusion in every way and from the earliest time.
Darrell and Dr Jackson were ahead of the formal recognition the human right to an inclusive education. Article 24 of the Convention on the Rights of Persons with Disabilities, which outlines the obligation of governments to ensure an inclusive education system, was only drafted 10 years ago.
Darrell Wills, Dr Jackson and others promoted the progressive core concepts of inclusive education against heavier headwinds and a less receptive societal culture to disability, which in many overt and insidious respects continues to this day – a culture that does not see disability as a natural part of human diversity that can be accommodated but rather sees disability as clinical deficit to be overcome or alleviated through cure or medical treatment – i.e. the “medical” or “deficit” model of disability that stubbornly continues to guide much of the thinking about disability today and unfortunately many educators.
I often look back and think of how fortunate I was to make contact with Darrell Wills and Dr Jackson and other families that they have also supported. They provided me with information, evidence-based research and more importantly a perspective that no one, including the Australian government, was providing then or now.
Julius’s path – and mine – could well have been different.
That is why I find the Australian Government’s “hands off” position, that the “choice” between regular schooling or “special” schooling for a student with disability is purely a matter for the parents, so unhelpful – perhaps negligent.
In the absence of parents being provided with full and proper information upon which to make such a key life-influencing decision, including an understanding that the right to an inclusive education is in fact a fundamental human right, to what extent is the Australian Government ensuring that parents have a proper basis upon which to make such an important choice in the long-term interests of their child?
The Final Report of the 2015 Review of the Disability Standards for Education 2005 noted an unwillingness of many mainstream school administrators to enrol students with disability:
“There are reports of schools discouraging enrolments for a multitude of reasons. A particular tension uncovered is that between mainstream and specialist schools. Parents of children with disabilities sometimes find that they are discouraged from enrolling in mainstream schools, and encouraged to pursue specialist options for a wide range of disabilities. ” [p21]
It also noted:
“Mainstream classrooms versus segregated classes, or isolating learning arrangements for some students with disability was flagged as a major issue. Some parents reported feeling pressured to place children in supported streams or special classes rather than being integrated inclusively in mainstream classes.” [p26]
The recent and scathing Senate Inquiry Report into the education of students with disability also found a widespread practice of “gate-keeping” by many mainstream school administrators – the “discouragement” of enrolment of students with disability in mainstream settings, contrary to the requirements of Disability Discrimination Act 1992 (Cth) and the national Disability Standards for Education 2005.
In other words, parents can’t rely on local school administrators to give them an understanding of their child’s rights to education, let alone impartial advice regarding schooling options.
Against that light, recommendation 1 of the 2015 Review of the Disability Standards for Education is particularly significant in providing:
“That the Australian Government work with State and Territory governments and relevant peak bodies to produce consistent, accessible summaries or rights, obligations and complaints processes tailored to different education settings … . These resources should also:
- affirm the Standards’ contribution to people with disability achieving their full potential in education contexts,
- affirm the desirability of inclusive education practices and the role of education in fostering social inclusion more generally.” [emphasis added]
In its Initial Response to the 2015 Review, the Australian Government states that it “agrees in principle” with recommendation 1 and that:
“[t]he Australian Government affirms that all students should be provided with an inclusive education, where all students are supported to learn, contribute and participate in all aspects of their education and learning environment”.
The Australian Government’s initial response falls short of clearly agreeing to develop resources articulating and supporting the “desirability of inclusive education practices and the role of education in fostering social inclusion” – it is hoped that the Government will. The provision of that information is crucial – but more so in light of the bias and failings of the education system identified by the 2015 Review of the Disability Standards for Education and the recent Senate Inquiry Report.
A critical decision concerning the education of a child cannot to be made by their parents in a vacuum, without proper information, or on biased, self-serving or out-dated “advice” – this is not a sound platform for making a decision that puts the rights and interests of the child, as a human being or as a student, first.