Until the age of eight, I was educated in a special needs school. Contrary to stereotype, the environment (as I recall) provided ample stimulation and nurturance. This, I believe, was thanks in part to the considerable degree of setting and streaming that occurred in the school’s delivery of learning. The establishment itself, to the best of my knowledge, was secular but cherished a religion nonetheless. In lieu of a deity, the school worshipped the idea of personal independence. As a concept, independence was held in the highest regard, treated as some sort of precious gemstone, capable of nullifying the disadvantageous effects of disability. This very mentality was entrenched in the school’s motto: Helping children to help themselves.
That message is certainly an alluring one. For the record, I am doubtless the school employed the strapline with innocent intentions. In society today, independence as it pertains to disability seems to pervasively enjoy a revered status. I know many families of disabled children (mine was no exception) emphatically encourage their children to strive for independence on the advice of disability practitioners, lest these children become adults who require care assistance (heaven forbid!). The reason for parents’ conformity to this advice is comprehendible: there is an implication that an independent child is a less disabled child and once thrown into the atypicality of disabled family life, parents may crave a more standard parenthood (Boland, 2016). Outside the family, businesses have developed the habit of marketing independence at disabled people. If I had £1 for every time a disability-related product promised me more independence, I could privately afford my own care package. In isolation, instances of independence promotion may seem like a petty target for censure but in aggregate they reveal a pernicious picture of non-disabled hegemonic power which manufactures common sense about the (type of) desires and goals suitable for disabled people. But what ultimate purpose does independence glorification serve at a societal level?
The answer, in my view, is primarily cost-cutting. A handful of years ago, while I was being assessed for care support, a social worker asked me whether I could cook for myself. As my physical inability to perform this task had not changed since my last assessment, which was held on paper in the social worker’s hand, I answered ‘no’. The reply to this was “Well maybe you could learn to be more independent. We [the council] could organise some cookery classes”. Now, unless I am very much mistaken, cookery classes are yet to be identified as a cure for quadriplegic cerebral palsy. The proposal struck me as particularly invidious because the social worker assumed that my incapability was rooted in laziness rather than impairment. This assumption lies at the heart of society’s attitude towards independence and disability. The underlying thought here is that disabled people are addicted to their dependence on others and by the virtue of their own grace, non-disabled people must ween disabled individuals off this dependence. Notice too here that the meaning of independence (e.g. the ability to cook) is not defined by the disabled person but by someone else. In other words, the privilege to dictate what is in the best interests of a disabled person is not possessed by that person themselves. More perturbingly, my acceptance of cookery classes would have furnished the social worker with an opportunity to reduce the help I receive at mealtimes. I issue this assertion against a bureaucratic backdrop where somebody capable of inserting a straw into a milkshake has been classifiable as able to prepare a meal (Channel 4 News, 2016). Additionally, the Local Government Association, a collective body of local authorities, has repeatedly referenced promotion of independence as a cost-cutting measure in documents obtainable at https://www.adass.org.uk/media/4607/tp3-use-of-resources-finding-cashable-efficiencies-in-asc-john-bolton.pptx and https://local.gov.uk/sites/default/files/documents/adult-social-care-efficie-4b6.pdf. In reality, the pressure to find efficiency savings in social care is driven by a particular approach to government. Whether that approach is right or wrong constitutes a debate beyond the purview of this post. Rather, a central proposition of mine here is that financial cutbacks to social care should not be disguised as decisions in the interest of disabled people. Such manipulation can quite literally add insult to injury.
At issue is a tactic in the politics of social care illustrated by the following real-world example. In 2015, Mr Luke Davey a man who also lives with Cerebral Palsy was subjected to a 42% financial reduction to his care package, by the local council, as his social worker deemed greater independence to be an outcome aligned with this service-user’s best interests (Carter, 2017). Within this example too, an agent of a local authority can be seen hijacking sovereignty over a disabled person’s very independence to meet political objectives.
An altogether different story emerges when disabled people try to demonstrate independence on their own terms. For example, a disabled individual who wishes to gain more freedom by acquiring a job or qualifications can expect to grapple with the stringency of securing government funds like Access to Work or Disabled Students’ Allowance which have been minimised drastically. This state of affairs highlights the resounding conditionality on disabled people’s independence within society: the current social order is quite content to promote disabled people’s independence so long as that independence does not generate a financial cost.
Regrettably, even some frontline care staff have seemingly absorbed the warped but ubiquitous view of disabled people’s independence. Not so long ago, I resided on a supported-living site for people with neurological conditions. When the staff were rushed between service-users’ dwellings, they would oftentimes mumble about promoting independence in response to my queries concerning their departure from the flat I occupied, prior to applying my antiperspirant or hair wax, to name just two examples. For both these tasks, I need assistance. This grievance echoed the accounts of my neighbours who were offered similar dismissive utterances. For the blatant mismanagement of the site, this independence trumpeting was manifestly a smokescreen.
Overall, society has reached a point where disabled people’s own independence is weaponised against them in many quarters. To elaborate, the territory of disabled people’s independence is commonly invaded and remapped so as to match the requirements of a systemic agenda to heighten efficiency. In terms of how to proceed, disabled people should act to detoxify the concept of independence by affirming and reaffirming what independence means to them. Via this course of action, I hope the disabled community can reclaim lost conceptual territory. As such, I invite fellow disabled people to push back against attempted manipulations of their independence in conversation, with the stern interjection: “Please let ME define MY own independence thank you very much.” With enough insistence, society may just come to learn that independence should not be used as a weapon with which to sacrifice disabled people’s wellbeing for the sake of time and money.
M P Smith (for the Disabled Leader’s Network)
London School of Economics and Political Science
October 2020
Reference List
Boland, R. (2016). Minding my disabled daughter: ‘I don’t want to do this any more’. The Irish Times. Retrieved 20 October 2020, from https://www.irishtimes.com/life-and-style/health-family/minding-my-disabled-daughter-i-don-t-want-to-do-this-any-more-1.2872341.
Carter, R. (2017). Disabled man loses ‘Care Act breach’ case in High Court. communitycare.co.uk. Retrieved 20 October 2020, from https://www.communitycare.co.uk/2017/03/01/disabled-man-loses-care-act-breach-case-high-court/
Channel 4 News. (2016). Disability campaigner and Conservative MP discuss cuts [Video]. Retrieved 20 October 2020, from https://www.youtube.com/watch?v=y4ovlFbekAU&t.
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