I am a loud proponent of neurodiversity. Maybe the reason why the idea resonates with me so strongly lies within 4 letters: ADHD. The concept is recent and possibly too young still to be a model in its own right and be allowed to take a seat next to its cousins the medical, social and affirmation models.
How did this alternative view come about?
Historically, religious leaders were healers. Then, with the pre-eminence of science, they were progressively replaced by doctors predicating the professionalisation of disability within an emergent medical model and what’s more, legitimising institutionalisation. This medical model has always sought normalisation through the elimination of disability, of course we all know that without disability we are the same. Science is all about fixing problems (which is fine really, we need scientists!) but science is also very creative in defining everything as problem so there is never shortage of ‘work’.
A few months ago, Dr Frith made my point in a video where she reiterated what she had claimed in her book ‘Autism and Asperger Syndrom’ – that Asperger children were “sick children who need to be made well again” and presented her research as the solution. More viciously maybe, this model defines disability as a consequence of an intrinsic condition of the person, and in this way, it ensures the label is essential to determine admissibility for public-funded services.
Conversely, the assessment of needs lends itself to the social model of disability. This model was coined by the disabled academic Mike Oliver in 1983 when he claimed people were actually disabled by the barriers society raises rather than their impairments, thus denouncing the discrimination between social and governmental imperatives. It stands aside from the medical one in distinguishing impairment defined as a physical problem or the condition itself, from disability expressed as a restriction of activity caused by an uncaring society.
However, how can public resources be allocated if a disability is not a medical ‘problem’ requiring fixing, but a social construct?
The United Nations Convention on the Rights of Persons with Disabilities attempted to reconcile the two in characterising disability as a consequence of the interaction between the person and ‘various barriers’ aiming to ‘ensure equal human rights and freedoms to all people with disabilities’. It was a necessary model to conceptualise the disadvantages disabled people face every day even after receiving a diagnosis. Since then, it has provided the backdrop for rightfully holding society accountable for helping and supporting the very people it ‘disables’ in the first place. Yet, its interpretation is as diverse as its implementation (will we ever get it right?)
Being forsaken by both models, disabled people created the self-advocacy movement ‘People First’ which considerably amplified the notion of support initiated through the social model. Still, the focus of this movement on negative labelling issues without acknowledging the delinquency of the economic system called for debates. In response, the affirmation model emerged in 2000, which Swain and French (visually impaired) used to argue that disabled people did not want charity (tragedy/medical model) while denouncing that their personal experiences of disability were ignored by the social model.
Interestingly, a few years before, the Australian (autistic) student, Judy Singer, toyed with the notion of neurological variance to finally settle with the term neurodiversity. Neither a model nor a paradigm, the idea circulated and was embraced by the Autistic Rights Movement until the Neurodiversity Movement crystallised. The concept of neurodiversity is the most compelling one, impregnating all public services down to the very fabric of politics. Hybrid by nature, it recognises the biological root cause of autism (medical model), agrees with the social construct of disability (social model), revendicates the positive identity of autism (affirmation model) while celebrating ‘human variation’ (because yes, we are all different no matter what). It refuses the word ‘disorder’, favouring instead the term ‘difference’. Yet, the most promising impact of this blended ‘framework’ is to afford autistic individuals to engage in everything that pertains to autism as epitomised by President Barak Obama, who in 2009, nominated Ari Ne’Eman (autistic) to the National Council on Disability.
Unfortunately, over the years, the need for provisions raised, and in light of the unstable economic climate of late, funds are now sparse thus justifying outcome studies. Let’s just say that since we have to allocate a greater budget to interventions, it seems logical to ensure funds are invested into programmes that actually improve the quality of life of those who are to benefit from them.
But how do we qualify the outcome, what does it mean, really?
And here, we face another dissenting reality; outcomes seem to measure the minimum provision required for support not how efficient support is. The concept of quality of life arose in the 1980s at a time of economic growth within the ‘quality revolution’ which positively reframed the perception of disabled people’s life prognostic allowing for a ‘person- centred’ approach encompassing notions of strengths, self-determination and equity. However, the socio-economic landscape has led to budget restraints and increased marketability of the health sector, in which reactivity reigns over proactivity.
Yet, a recent Spanish study from Arias et al. (2018) gave breadth to the argument that access to support contributes to quality of life and in that sense to positive outcomes.
All in all, measuring quality of life should be about reporting levels of happiness, not a small feat, I hear you! As Peter Vermeulen eloquently said: “wellbeing is more than the absence of behavioural and mental health issues”.
So, when was the last time you asked “Are you happy?”
