A very interesting report was published by the Mental Health Foundation last week, exploring whether the social model of disability provided fresh perspectives on how public policy and society at large might respond to the growing numbers of people living with dementia.
Dementia is certainly an impairment and those who experience it encounter a range of social and economic forces that risk their marginalisation and exclusion in our society. These bear all the hallmarks of the struggles of the Disabled People’s Movement: against the dominance of medicine (including psychiatry) to the exclusion of tackling socially constructed barriers, to not have one’s life be regarded as a tragedy by others, to live free from stigma and prejudice, to have equal access to mainstream goods and services, to be able to contribute socially and economically, to live free from poverty, to maintain one’s right to make decisions, to not be reduced to an object of care but to be respected as an equal citizen, to escape institutionalisation and forced treatment and to live freely in the community with choices equal to others.
In sum, it is the re-balancing from a deficit based model (the person’s situation is wholly a tragic product of their impairment, which should ideally be fixed) to a rights-based model (the person has inalienable human rights and it is society’s obligation to strive to uphold them, irrespective of the impact of their impairment). As with disability rights more widely, this re-balancing has profound implications for how society is re-organised and for how individuals with dementia regard their own situation and life opportunities.
The report has a tendency towards an exceptional account of the limitations of the social model of disability as regards the life situation of people with dementia. The report notes how:
‘Given that the majority of people with dementia frame dementia as an illness or disease (with some rejecting the concept of it being a disability because of the negative connotations this can imply), a more nuanced and less radical model of disability may be more appropriate to engage. It can certainly be argued that the lived experience of people with dementia is usually articulated as the impairment itself causing a disability. Therefore, a disabling factor may be intrinsic to the condition. In these instances, the social model needs to take account not only of the external barriers, but also of the social and psychological obstacles that exclude or restrict full participation in society. Lived experience, as well as societal responses, may also vary significantly depending on the severity, perceived ‘stages’, and the type of dementia.’
In fact research published by the Department for Work and Pensions found that 52% of people with rights under the (then) Disability Disability Discrimination Act did not identify as a disabled person and I would be surprised if this were not the situation globally with respect to the UN Convention on the Rights of Persons with Disabilities. Follow up market research by the Disability Rights Commission (DRC) focusing on this group found that for the majority their identity was not defined by ‘being disabled’ but that most acknowledged their impairment and recognised the unfair treatment they sometimes encountered that was connected to it. As a result the DRC’s communications employed the global terms ‘people with rights under the Disability Discrimination Act’ or ‘disabled people and people with long term health conditions’ as well as peppering communications with references to particular impairments or health conditions. Here the important goal was not foisting an identity on people as a condition of entitlement, but ensuring that people with rights knew that they had them and did not let discrimination go unchallenged.
To these ends it is always important to recall that the UNCRPD is not an international Bill of disabled people’s rights, but an affirmation of universal human rights, an acknowledgment that in practice these rights have often been denied to people with impairments and health conditions and a programme of action for State’s to ensure that in future human rights are extended to the whole human family equally. In short, the UNCRPD is the ‘user guide’ to making human rights a lived reality for people with impairments and long term health conditions. Those concerned about the situation of people with dementia would be wise to engage with it, and given the degree of focus presently being placed on dementia around the world, those nationally and internationally who have most influence over the way the Convention is being interpreted and implemented would be equally wise to engage with people with dementia and their organisations.
Moreover, the social model of disability was never intended to entirely obscure the intrinsic effects of an impairment or health condition. Many people with impairments and health conditions rely on ongoing treatments, therapies, rehabilitation and medicine to support their participation on society. The social model of disability has helped create a new focus on removing barriers, but it has not abated the quest to prevent, reduce or eradicate impairments or health conditions (it is important to note however that some disability rights advocates regard this as problematic in and of itself, suggesting that it reveals a tendency towards eugenics and the devaluing of the lives of disabled people).
Nevertheless the call for a ‘more nuanced’ model is important and connects this paper to wider debates regarding the interplay between ‘sickness’ and disability that have emerged particularly as a result of the manner in which welfare reform has been designed and implemented. Dementia, like other progressive conditions, depletes functioning and makes the performance of certain tasks difficult if not impossible. Interventions beyond medicine can help ameliorate these effects, whether inclusive design, new technologies, human support, efforts to tackle stigma and prejudice or innovations in law and through doing so help build a more inclusive society in which dementia is accepted as part of the human condition. But we are mistaken if we start with the idea that such interventions are always capable of creating a ‘level playing field’ whereby the effects of impairment play no part in determining what a person can be or do. Such an approach can expose people to entirely unrealistic, unfair and sometimes outright dangerous expectations, as we see with the design and implementation of Employment and Support Allowance, the flipside of which is to write people off altogether, often arbitrarily, under the auspices of social protection.
The disability rights movement has cultivated an approach to equality and rights which emphasises recognition and accommodation of difference. It is equally important to cultivate an approach to social responsibilities and obligations which also emphasises recognition and accommodation of difference. A genuinely inclusive society welcomes and nurtures everyone’s participation and contribution, whatever it might be, for the common good.
A more nuanced approach to disability would be able to address the contradictions that have emerged in the pursuit of equality on the one hand and in relation to the targeting of public resources – and social security in particular – on the other. Without it I fear it will be the pursuit of a rights based approach to disability that will lose out, as human deficits are emphasised by individuals, campaigners and politicians in defence of benefit entitlements.
While this was not the motivation of the authors of this report, their call for a more nuanced approach comes at a critical moment.