Let us talk about invisible children and those who are deliberately left out: campaigning for children with special needs in China

Abstract

This article criticises a marked research tendency to exclude the voices of children with special needs in China. Finding the predominant positivist tradition and ableist assumptions disconcerting, I aim to defend and campaign for Chinese children’s basic rights to be (mindfully) included in the research process. In particular, this article directs public and research attention to those Chinese children with less recognisable learning disabilities, who have been deliberately left out in the current discourses and policies with their needs remaining invisible in schools and society. In proposing a new research agenda for children with special needs in China, this article urges for an explicit research commitment to improving their lives and highlights promising directions and approaches for future research.

Keywords:

• Exceptional children
• China
• special education
• specific learning difficulties
• qualitative research
• voice

The age that is most ailing is not that which is violent on behalf of error, but the age which neglects, which disdains the truth. (Lamennais 1895, xv)

I recently stumbled upon disability literature in helping my Chinese friends find better ways to work with their ‘normal-appearing-but-somehow-different’ children. My initial literature screening yielded limited disability or education research in China (both in Chinese and English), which was disappointing but understandable, especially given China’s late legal and social developments with regard to disability movements and special education. On the other hand, as my review progressed, the revealing dispassionate or even dismissive tone which prevailed in the literature was rather disheartening. At one extreme, exceptional children were ‘rigorously administrated’, almost as if existing only for the purpose of research, ‘carefully screened to ensure that … they did not have any suspected brain damage, uncorrected sensory impairment, or serious emotional or behavioural problems’ (Ho et al. 2004, 53). In most cases, their stories were completely left out, with their parents’ and teachers’ experiences being itemised to ‘measure’. As an academic trained in a traditional establishment in the United Kingdom, I see power dynamics and social relations in publication productions, the predominance of self-perpetuating positivist tradition, and paradigms’ and movements’ struggles about ‘truths’ and ‘realities’. I was stunned by our academic arrogance to exclude those affected most by the research, and by our ‘educated indifference’ towards those who are different during the research process.

In the end, nothing has really changed since eugenics: the policies may be outwardly transforming and more inclusive, and the facilities are more accessible too (Zhao and Zhang 2018), but we still unreflectively try to ‘rectify’ exceptional children with powerful language and conformist thought, by viewing learning differences as ‘problems’ (Deng and Holdsworth 2007, 508), by expecting children with special educational needs to ‘achieve adequately’ by ‘inclusive’ standards (Yan, Deng, and Ma 2019, 13), and by training autistic children to ‘behave more like a normal child’ (Guo 2006, 525). Disabilities are seen as deficits to be rehabilitated; sufferings to be alleviated; problems to be eradicated; and so forth; they are anything but a part of diversity. These ableist norms need to be challenged; a diversity perspective is necessary.

‘How can we be so cold?’, I asked myself. Chinese disability and special education research in general, and on children with learning differences in particular, has yet to address those affected most by it. I could see that the children’s own voices have, in fact and perhaps unsurprisingly, played a negligible part in shaping our knowledge about their ‘disabilities’, and the policies and practices directly affecting them. This we must change.

Championing future research for children with special needs in China

This article calls for future research, and for the public and the policy-makers, to think and act for children with special needs (broadly defined) in China, while giving particular attention to children with learning differences or specific learning differences/difficulties. By this call, I intend to instil an explicit and foremost value, in public and academia, to work to maximise the children’s well-being to the greatest extent possible within their particular individual and societal contexts; followed by an upfront (political) stance to oppose ‘sampling’ these children for research without a demonstrated moral rationale from their perspectives. It is about time that we talked about them as children, regarding their feelings, hopes, and futures, and stopped centring on ‘what-we-define-as-disability’; that is, their differences, atypicality, and non-conformity. They are first and foremost children, and should be identified, recognised, and understood as such. If it was necessary – given the current state of affairs – to identify, recognise, or understand them by learning their non-conformity, then we must not forget they are first and foremost children, not ‘disabilities’.

It is about time we put the horse back in front of the cart. Let us work our way around the academic conventions in getting to know and understand children with special needs. We want memoirs of their struggles and success, their everyday ups and downs, and their preferred styles of learning and living. We want research that contextualises the children’s perceptions, experiences, and behaviours (broadly defined), based on mindful and thoughtful interactions. We want naturalistic observations that would allow us to (try to) feel what it is like to live in their worlds. We want genuine signs of compassion in writing, should it unfortunately be the case, about their harsh realities or the lack of understanding and support from the public, schools, and society. We need more people, a lot more people, to join discourses and research which can lead us to learning the children’s ‘unprimed’ voices and realities without or with minimal preconceived frameworks. This is a tall order, especially given the foreseeable methodological and moral difficulties, but we must take up the challenges (for promising approaches, see Williams 2016; Stafford 2017; Allan 1996). This is not only because, in general, Disabilities Studies is under-theorised and thus difficult to adequately support quantitative approaches, but also because in particular we must uphold a moral obligation to speak for those without a voice. From critical perspectives, the problematic mainstream assumptions on disability have long been well argued against in the West (for example, Rioux and Bach 1994). If having to concede into arguing from a positivist tradition, building theories in the social sciences requires detailed and in-depth observations – commonly accomplished by ethnography – before a more quantitative approach can ‘fit’ methodologically (for example, Edmondson and McManus 2007), especially in an indigenous context. In China, we must also be mindful of the distinct societal contexts of/for cultural perceptions and attitudes towards disability (for example, Lin and Yang 2018), avoiding morally problematic procedures which may implicate the children’s self-perceptions, self-identities, and values during the research process.

In particular, I am bringing to the fore Chinese children with specific learning differences/difficulties, especially those without easily recognisable or quantifiable mental, intellectual, behavioural, or emotional ‘impairments’, who have been completely left out of the current discourses, studies, and policies. Their needs remain mostly unarticulated and invisible in schools and society, often even to their own parents (which in fact brought me to writing this article). Not only does this render the children’s various aspects of life precarious, but also causes the families great difficulties in getting support and perennial anxiety from not knowing. Without established processes for diagnosing children with specific learning differences/difficulties in China, some parents resort to hearsay from the Internet and personal resources in their despair to get a bearing on what to do with their neurodivergent children. If living in a developed city where fortunately private psychologists, educational specialists, or parenting consultants are available but expensive, well-off parents can at least have the option to seek help; even if such ‘help’ is but sporadically reliable in part as a direct result of lacking proper research to inform practice. In the absence of public awareness, most of these Chinese children are tagged ‘peculiar’, ‘weird’, ‘problematic’, or ‘difficult’ by the world surrounding them, often including their own parents (such as my friends aforementioned). These ‘tags’ in and of themselves call for academic and public endorsements to fight for appropriate attention and support for the affected children in China. Please, may I strongly urge you – an academic, a researcher, a policy-maker, a journalist, a blogger, an ordinary audience, anyone, and everyone – to respond to this new agenda to research for children with special needs in China.

Last, but perhaps most importantly, I would like to appeal earnestly to the activists, academics, researchers, and sociologists in the field of Disability Studies for further discussions, thoughts, debates, and even critical concerns on future research for children with special needs in China. Thoughts on important implications and future directions will be invaluable, especially conversations on how an increasing public awareness and endorsement – and thus the likely attendant ‘labelling’ – might shape and change the social and individual aspects of the children’s lives. Again, I would like to draw the research emphasis on the sociological dialogues centring on the children themselves, giving particular attention to scenario analysis and the potential pros and cons in light of the children’s immediate and future circumstances. Moreover, methodological reflections and comparative analyses are of particular interest. May I also earnestly appeal to the prominent scholars, opinion leaders, and ‘gatekeepers’ (i.e. journal editors and reviewers) to decidedly signal an equal acceptance of or even preference for qualitative research, in particular in the heavily under-researched contexts (e.g. China). It would be especially beneficial to get the Chinese researchers to come to appreciate that often it is preferable and sometimes even necessary to let their positivist legacy¹ go and embrace other research traditions.

Curtain call

My original idea of writing this article was inspired by my persistent difficulties in trying to find dependable help for my friends who had somehow all turned to me for advice with their children, despite the fact that I am neither a psychologist nor an educational specialist (and I am not a parenting consultant by profession!). Their requests often started with one of the variations of ‘You’ve been to so many countries (in the West), do you happen to know …’ – it was such a curious, desperate yet accurate speculation. It was curious because even though none of them had ever been out of China, they seemed to reason ‘the West’ probably had more advanced knowledge about their children. It was also desperate because their children rarely presented any constantly specific and radical ‘abnormalities’, but something about being parents just told them to act on it, to get some help – any help. Finally, it was accurate because I did have the knowledge that people perceive and practise very differently in the West as they know more about children with differences. With this knowledge as a burden for inaction, I started reading for this article hearing a quiet distress call for help from the disquieted families in China, only to have finished writing it finding a general exclusion of children’s voices in the literature. Indeed, the ‘transformative potential of voice is dependent on a political commitment to listening to disabled people …, (redirecting) accountability for social change from disabled people to the ableist norms, institutions and practices (Thill 2014, 15). With this commitment, let us work together for exceptional children in China and beyond.

Acknowledgements

The author would like to thank Professor Val Williams for editorial advice and Joshua Newell for proofreading. The author extends acknowledgement to include Professor Steve Armstrong and Professor John Blenkinsopp for the extensive supervisory guidance during PhD studies, without which the successful construction of this article would not have been possible.

Disclosure statement

No potential conflict of interest was reported by the author.

Correction Statement

This article has been republished with minor changes. These changes do not impact the academic content of the article.

Notes

1 It might be interesting to note that both 'positivist research’ and ‘empirical research’ are translated into the exactly same Chinese phrase (‘实证研究’ – although in Taiwan ‘empirical research’ can be translated as ‘实征研究’; both put in pinyin as ‘shi zheng yan jiu’).