The Affirmation Model as a Subversive Narrative

In this article I will introduce the affirmation model of impairment and disability, outlining where it has come from and why it is required. I shall explore this model in relation to the dominant individual and personal tragedy models, and as an extension of the social model developed by disabled people (UPIAS, 1976; Oliver and Barnes, 2012). I propose the affirmation model as a tool for practical use, both by disabled people and social workers (among others) for making a different sense of the meanings of both impairment and disability to those commonly understood and acted on. I will close by considering a number of statements by disabled people, reflecting on these in the light of a philosophical proposal made by the Spanish existentialist Miguel de Unamuno.

The affirmation model is a social relational model of impairment and disability which builds on the understanding developed in the social model and on ideas of Disability Pride expressed by disabled people in the UK disability arts movement (Cameron, 2009). It rejects understanding which can conceive of impairment only as individual deficit, and validates impairment as part of ordinary human difference. In the affirmation model disability is identified as a form of social oppression imposed on people with impairments in their encounters with normalising judgements in everyday life, and in terms of the outcomes of those encounters. It offers a narrative of resistance:

• Impairment: physical, sensory, emotional and cognitive difference, divergent from culturally valued norms, to be expected and respected on its own terms in a diverse society.
• Disability: You are disabled if on a 'substantial' or 'long term' basis you have had to deal with other people's oppressive expectations and assumptions about people with impairments, and have on that basis found your life made difficult and your opportunities for equal participation restricted (Cameron, 2023).

This model was first suggested by Swain and French in a 2000 Disability and Society article entitled 'Towards an Affirmation Model'. Their proposal involved an attempt to address critiques of the social model, by disabled feminists in particular, who had argued that in its development of a structural analysis of disability - enabling a focus on physical and institutional barriers requiring to be addressed - the social model had left little room for exploration of the personal experience of impairment (Morris, 1991; French, 1994; Thomas, 1999). Swain and French set out a position from which it could be asserted that, far from being necessarily tragic, living with impairment can be experienced as valuable, interesting and intrinsically satisfying.

The affirmation model was proposed as a response to the personal tragedy model - the cultural expression of the individual or medical model, materialised through relentless regurgitation of disciplinary messages that 'able-bodiedness' is valued while impairment is regarded as a mark of misfortune: to be endured, struggled against and overcome (Cameron, 2014). It was not about denying there can be negative experiences resulting from impairment, but to make the point that this is not all that impairment is about. Swain and French suggested that the need for an affirmation model is established in that it is not a purpose of the social model to reject a tragic view of impairment. Even in an ideal world of full civil rights and participative citizenship for disabled people, they argued, an impairment could be seen to be a personal tragedy (Swain and French, 2000:571). My own work, following Swain and French, has involved the further development of this model (Cameron, 2010; Cameron, 2023).

The prevalence of medical and tragedy model thinking in social and institutional contexts can be demonstrated, for example, by considering the disability definition in the 2010 Equality Act, the major legislation overarching UK social work practice with disabled people:

You're disabled under the Equality Act 2010 if you have a physical or mental impairment that has a 'substantial' and 'long-term' negative effect on your ability to do normal daily activities' (GOV.UK 2023).

Despite the appearance of the Equality Act as progressive legislation, this definition entrenches both medical and personal tragedy models of disability. It establishes medical model thinking by defining disability as the outcome of impairment (Cameron, 2014b), and personal tragedy model thinking by establishing disability as something that can only be experienced negatively, as a departure from normalcy (Cameron, 2014). It identifies disability as something that a person 'has', as something that is 'wrong' with them; or, in Michalko's (2004:93) terms, as 'useless difference'.

In identifying disability as a form of social oppression, as 'something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society' (UPIAS, 1976:14), the disabled people's movement, resisting dominant understanding, has developed a perspective 'fundamentally opposed' to the medical model (Drake, 1999:14). Rather than being something wrong with some people's bodies, the social model identifies disability as being about the way society responds to impairment: in terms of institutionalising it, segregating it, attempting to cure, rehabilitate, or normalise it, stigmatising it. It is about disabling practices by professionals, and feelings towards themselves of people with impairments who have been subject to these disabling practices. It is about the narratives disabled people are able to draw on to make sense of who they are in terms of the physical and social environments they live in (Cameron, 2007). Disability involves barriers. The social model has enabled disabled people and their allies to draw attention to these barriers and to campaign collectively for their removal.

Nevertheless, in defining impairment as 'lacking part or all of a limb, or having a defective limb, organ or mechanism of the body' (UPIAS, 1976:14), the social model leaves open the possibility, as Swain and French (2000) identified, for impairment to remain considered primarily in terms of loss, or simply as a negative experience. This, however, flies in the face of what many disabled people say about themselves. The following statements are made by disabled people I interviewed in my PhD research (Cameron, 2010). Names used are agreed pseudonyms.

I don't see it as a tragedy, I just see it as a fact of life that I've got to get on with. And I do not want people feeling sorry for me, cos that doesn't help anyone, it's just annoying. I can't imagine being another person, because this is all I know. Because it's hard to say I'd rather not have this illness because I don't know what I would be like without it. Part of me thinks would I be a much more shallow, selfish, insensitive person. And I'd rather not be that person.

Had things been different, I might have been a different person. But I wouldn't have been a better one.

Do I fundamentally want to change myself and wish my impairments away? No, I don't. To me, they're just part of me. They're an innate part of me.

I think as me as a non-disabled person in the past. No, I wasn't happy. But then, I didn't know myself then, and didn't have that awareness that I have now. I can't say for sure, cos I don't have the evidence, but I suspect that I wouldn't have gone through all these experiences which have made me the strong personality that I am today.

These statements indicate that, far from relating to their impairments as 'useless difference', some disabled people value their impairments as an important part of their identity; as a core part of making them who they are. Helen and Surinder, for example, talk about their impairments as having added value and insight to their lives they would not otherwise have had: a greater depth of understanding, self-awareness and empathy. Understanding of this can be gained by considering the work of the early 20th Century Spanish philosopher Miguel de Unamuno, who recognised the existential value of pain and argued that 'consciousness of oneself is simply consciousness of one's own limitation' (1954:140). In Unamuno's (1954:140) terms:

Suffering is the path of consciousness, and by it living beings arrive at the possession of self-consciousness… For to possess consciousness of oneself, to possess personality, is to know oneself and feel oneself distinct from other beings, and this feeling of distinction is only reached through an act of collision, through suffering more or less severe, through the sense of one's own limits.

'Suffering' is a word not generally favoured within Disability Studies because of the way it is often lazily used in medical model discourse to describe the experience of having an impairment: “She suffers from deafness”; “He suffers from blindness” etc., as if all disabled people have to do every day is spend their time enduring and lamenting their 'terrible afflictions', instead of getting on with things and living their lives. Nevertheless, disabled people do experience impairment effects (Thomas, 1999), which can cause inconvenience, discomfort or pain, and require to be lived with, thought about and dealt with. Disabled people's experiences of being marginalised and excluded, of being made 'Other', of having to be perpetually aware that one is regarded by other people as a problem, represent another form of suffering. The sense of separateness from what is considered normal daily activity (to repeat the Equality Act's definition), it seems, leads to a reflectiveness which may not, after all, be quite so useless as it is usually considered.

When the most widely-heard narratives available to make sense of impairment and disability are those of the medical and personal tragedy models, it is easy to understand why many people with impairments feel uncomfortable about disability as an identity and avoid association with the term. The social model has allowed us to understand disability as oppression to be struggled against, and has established the basis for the development of a collective disability identity of pride and strength. But, according to its disabled feminist critics, the social model has also left disabled people reluctant to talk openly about impairment. The affirmation model builds upon this collective identity of pride and strength, and draws upon disabled people's statements about their lived experiences to suggest a different way of making meaning of the experience of living with impairment in a disabling society. It is a subversive narrative in that it reflects the voices of oppressed people who reject dominant and taken-for-granted thinking.

Once we have recognised disability as oppression, we must decide how to respond to this. For disabled people, it is about making choices about who we are and who we are to become, again and again as we encounter disabling assumptions in everyday life. For others, including social workers, it requires reflection about the kinds of assumptions made about impairment and disability in everyday practice.

References