How do we each perceive our own disability/ies? How do our communities perceive them? Our families? Our society? Our support workers, therapists, doctors? There are a variety of models of disability and each has levels of validity and equally associated pitfalls in over application. What is a model of disability?

THE MEDICAL MODEL OF DISABILITY

The International Classification of Functioning, Disability and Health (ICF) defines disability as an umbrella term for impairments, activity limitations and participation restrictions. Disability is the interaction between individuals with a health condition (e.g. cerebral palsy, Down syndrome and depression) and personal and environmental factors (e.g. negative attitudes, inaccessible transportation and public buildings, and limited social supports) .[2]

The altered language and words used show a marked change in emphasis from talking in terms of disease or impairment, to talking in terms of levels of health and functioning. This change is consistent with widespread acceptance of the social model of disability.” http://en.wikipedia.org/wiki/Medical_model_of_disability

THE SOCIAL MODEL OF DISABILITY

“In year 1975, the UK organization Union of the Physically Impaired Against Segregation (UPIAS) claimed : “In our view it is society which disables physically impaired people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society.”[2][3]

In 1983, the disabled academic Mike Oliver coined the phrase “social model of disability” in reference to these ideological developments.[4] Oliver focused on the idea of an individual model (of which the medical was a part) versus a social model, derived from the distinction originally made between impairment and disability by the UPIAS.[5]

The “social model” was extended and developed by academics and activists in the UK, US and other countries, and extended to include all disabled people, including those who have learning difficulties / learning disabilities / or who are mentally handicapped, or people with emotional, mental health or behavioural problems.[6][7]

Oliver did not intend the “social model of disability” to be an all encompassing theory of disability, rather a starting point in reframing how society views disability.[citation needed]”

http://en.wikipedia.org/wiki/Social_model_of_disability

THE AFFIRMATION MODEL OF DISABILITY

“In this paper we argue that a new model of disability is emerging within the literature by disabled people and within disability culture, expressed most clearly by the Disability Arts Movement. For the purposes of discussion we call it the affirmative model. It is essentially a non-tragic view of disability and impairment which encompasses positive social identities, both individual and collective, for disabled people grounded in the benefits of lifestyle and life experience of being impaired and disabled. This view has arisen in direct opposition to the dominant personal tragedy model of disability and impairment, and builds on the liberatory imperative of the social model. Critiques of the latter have been consistently expressed as, or interpreted as, re-affirmations of personal tragedy, particularly in relation to impairment. In this analysis the affirmation model addresses the limitations of the social model through the realisation of positive identity encompassing impairment, as well as disability.” http://www.tandfonline.com/doi/abs/10.1080/09687590050058189#preview

The medical model wrongly projected one size fits all ‘tragedy’ onto those with disabilities, offering hope of ‘cure’ for conditions many were accustomed to as their own ‘normality’. Saying that, overzealous hatred of the medical model has also lead to any co-occurring health disorders of those with disabilities like autism being ignored as ‘just part of the autism’.

I have seen gut and immune disorders, dystonia, even pituitary tumor ignored by the doctors of autistic children as ‘just part of the autism’ or ‘yeah, that happens in autism’. This I find appalling for we would never do this to a non autistic child. As a person with immune deficiencies, I’d not be alive if not for antibiotics through childhood. If we fob off the health issues of those with medical disabilities just because they also have autism, we might as well call that subtle eugenics.

The social model takes the blame the victim and turns it around into blame the environment. And it is a fact that environment contributes significantly to the trauma of many with disabilities. Exclusion, segregation, patronisation, presumptions of incompetence, bullying, pathologising every difference, over therapising to the point of damaging self esteem and identity development, lowered expectations, narcissistic martyrdom of carers, the constant measurement of those with disabilities against the standards of those without disabilities rather than seeing their worth in their own right… no doubt these are the illnesses of society, in our communities, the pathology of any presumptions of one size fits all ‘normality’.

But equally, if someone has health disorders at work that lead to severe brain chemistry imbalances and involuntary behaviours or life threatening levels of depression or anhedonia the person themselves neither identifies with nor feels comfortable with, then to continually and rigidly project onto them a purist social model that ‘its all caused by society and/or your own low self esteem/lack of self acceptance’ is a very sick thing for any group to project onto an individual, and potentially dangerous. There are those ashamed of seeking medical help for mental health disorders, some of whom turn instead to self medicating with substance abuse and some of those ultimately die from overdoses, sometimes suicide. So the over application of the social model is also not without its flaws.

The affirmation model has plenty of merits: focus on the strengths you have, identify proudly with what you are, presume competence, measure yourself by your own standards not those of people who are not walking in the same shoes you are, reject ableism and its associated bigotry/separatism, celebrate the diverse abilities of your disabled peers, strive for equality at all times with non disabled people without modelling yourself as one of them to get that, celebrate difference and diversity, break down the social barriers, reject the language that portrays you as a victim/tragedy/less than others.

But the affirmation model too has its weaknesses. We know and it is fact, that any condition a human being has can be ego SYNTONIC (identified as PART OF SELF) or ego DYSTONIC (identified as intrusive, contorting or constraining or limiting the expression of self). So whilst most with Asperger’s Syndrome experience their condition as largely if not completely ego SYNTONIC (part of self), so do those with Anorexia who commonly die from their embraced disability. Then someone with ALS who is losing all abilities of their body may experience their disability as ego DYSTONIC… they may experience it as contorting, constraining, limiting the expression of self… or someone with Asperger’s who develops progressive Anhedonia may feel they are losing their connection with emotion and all experience of the emotional repertoire they once experienced as selfhood… if they develop progressive dementia (and untreated celiac can lead to this for example) they may experience this as ego DYSTONIC, a loss of self as a result of this progressive disability… and a child with Disintegrative Disorder who is losing all their abilities, or Celiac induced polyneuropathy, or immune dysfunction, may also not experience neurological impairment or degeneration as ego syntonic. And be so busy celebrating their disabilities that you avoid, block or even persecute them or their families for seeking treatment is as unwell as the harm done under the old medical model of disability where treatment is forced on those who are not suffering, not losing abilities nor at risk of losing abilities at all.

The level of dogma, of ignorance, of venom in the autism world, from each of these positions, has divided us, turned us into zealots and been a tedious drain on all of us. The reality is that a model is only a model, it is not a religion, nor is it applicable in every and all cases and situations at all times. A model is not a cult. But committed disciples of these models have created groups that are no longer communities, scenes, cliques, they have progressively come to behave like cults. And cults are places where true selfhood fades into the background until the personhood of the cult member is entirely co-opted by the group think and can no longer reason with any flexibility whatsoever.

BUT WAIT…. THERE’S ANOTHER MODEL!!!

THE EMPOWERMENT MODEL OF DISABILITY

I’d like to propose the empowerment model of disability. Under this model people with disabilities and their carers have a right to fully understand the nature of that person’s disability/ies on any level; where it is or isn’t experienced as their identity or selfhood, which parts the person feels are strengths that need advocacy and appreciation and which parts the person finds degenerative, painful or reducing their quality of life, which things they feel require only acceptance, which require only advocacy, which they would prefer some help managing or developing adaptations for, which parts they would like to explore treatment for. The Empowerment model avoids emphasis on or direction toward cure. It focuses not on their label/s but their personhood regardless of the label/s that are experienced as integrated into, containing or constraining that personhood. The only goal of the Empowerment model of disability is that of empowering the individual. My Fruit Salad Model of autism is an example of the Empowerment model. By having the ability to understand the ingredients in one’s own disability/ies, one can choose to do with each part as one wishes.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.