The importance of definitions for disabled people’s independent living and equal participation in society cannot be overstated. Definitions guide actions, shape identities, underpin policies and justify public spending. Moreover, definitions maintain or undermine hierarchies, they are means of social control or liberation. The Independent Living movement has struggled for decades to challenge definitions imposed on disabled people by medical professionals, public administrators and the wider society, and in their stead to create and promote definitions of its own.
One example is the definition of ‘independent living’ itself. In the modern period, ‘independence’ has been understood predominantly as ability to cope on one’s own, without external support. Medical and other ‘helping’ professionals have reproduced this understanding in their treatment of disabled people. Professionals have put their efforts into ‘fixing’ disabled people’s bodies and minds so that disabled people could become ‘independent’ by coping without support from others. Those who could not be ‘fixed’ in this way have been confined to residential institutions or their homes.
Independent Living advocates have challenged this understanding of ‘independence’ by insisting that ‘independent living’ is not about self-sufficiency or self-reliance. Rather, ‘independent living’ is about choice and control in everyday life that, importantly, includes choice and control over one’s own assistance:
Independent Living does not mean that we want to do everything by ourselves and do not need anybody or that we want to live in isolation. Independent Living means that we demand the same choices and control in our every-day lives that our non-disabled brothers and sisters, neighbors and friends take for granted.
The European Network on Independent Living (ENIL) has created its own definitions of ‘independent living’ and other key disability policy terms. The aim of these definitions is to guide policy making on European and national levels, as well as to combat misunderstandings and to prevent the ‘hijacking’ of the language of Independent Living advocates that is becoming increasingly widespread:
the terms ‘independent living’ and ‘personal assistance’ have often been exploited and misused to profit organisations, charities and disability business which are not run and controlled by disabled people. These organisations do not appear to want to fully understand the concept of independent living as developed by the independent living movements across Europe and internationally.
ENIL’s definitions of terms such as ‘independent livings’ and ‘personal assistance’ are political because they intervene in the struggle for meaning, which is also a power struggle against professional hierarchies and for disabled people’s liberation. This struggle still characterises the disability area all over the world.
Below, I present my reading of ENIL’s definition of ‘independent living’. This commentary is part of a literature review that I am conducting for the project User-Led Personal Assistance in the European Union, hosted by ENIL. I comment on ENIL’s definition statement by statement and I outline some ideas, distinctions and priorities that may not be immediately obvious but that nevertheless underpin what is explicitly stated. I hope that this will make the definition clearer and will strengthen its message.
ENIL’s definition of ‘independent living’
ENIL begins its definition of ‘independent living’ by stating that: ‘Independent living is the daily demonstration of human rights-based disability policies.’ This suggests that ‘independent living’ is about translating the abstract principles of human rights into concrete everyday practices. In disability studies and activism, the ‘rights-based approach’ to disability policy has sometimes been opposed to the ‘needs-based approach’, and the shift from ‘needs’ to ‘rights’ has meant transition from charity to entitlement, from passivity to activity, and from professional domination to self-determination of disabled people.
ENIL’s definition then continues: ‘Independent living is possible through the combination of various environmental and individual factors that allow disabled people to have control over their own lives.’ I take this to mean that independent living policies pursue two strategies simultaneously. First, they design or modify mainstream ‘environments’ – including mainstream buildings, housing, transportation, schools and workplaces – to make them accessible and accommodating for disabled people.
Note that the creation of specialised services such as sheltered workshops or day-care centres, even when these are located within the community, does not enable independent living but perpetuates segregation and exclusion. Instead of such services, independent living requires individualised support in the community that includes personal assistance, communication assistance, assistive technologies and peer support, among others. These solutions comprise the ‘individual factors’, the second strategy for making independent living possible.
ENIL’s definition also states that: ‘This [having control over one’s life] includes the opportunity to make real choices and decisions regarding where to live, with whom to live and how to live.’ By implication, independent living excludes housing and servicing arrangements where disabled people are forced to live in designated buildings and groups, as well as to follow everyday routines determined by their service providers or ‘helpers’. In policy-making terms, housing and support should be decoupled:
A key problem with many contemporary institutions is that they tie the provision of support to housing. Thus, people who need support are forced to accept a ‘group home’ type living arrangement, and vice versa – people who need a place to live are forced to accept the support provided there. This is in violation of Article 19 of the CRPD [Convention on the Rights of Persons with Disabilities], which explicitly states that disabled people should not be ‘obliged to live in a particular living arrangement’.
Next: ‘Services must be available, accessible to all and provided on the basis of equal opportunity, free and informed consent and allowing disabled people flexibility in our daily life.’ In my reading, this means that independent living calls for redistribution of resources towards universally accessible services (‘positive’ measures), as well as for non-interference and respect of privacy (‘negative’ measures) – support should not be imposed (through hard or soft power) but freely chosen through ‘informed consent’. In addition, flexibility of use is key – its opposite are the rigid routines and one-size-fits-all solution of residential institutions and other provider-led services.
Reading further: ‘Independent living requires that the built environment, transport and information are accessible, that there is availability of technical aids, access to personal assistance and/or community-based services.’ Here, ENIL enlists some of the key policies that make independent living possible. Such policies constitute the ‘environmental factors’ (making the built environment, transport and information accessible) and the ‘individual factors’ (providing technical aids, personal assistance and/or other community-based services) mentioned above.
Finally, the definition concludes by pointing out that ‘independent living is for all disabled persons, regardless of the gender, age and the level of their support needs’. Since independent living is a human right, as also stated in Article 19 of the CRPD, support for it should be unconditional rather than restricted by age, gender, degree of impairment or, indeed, other qualifications such as personal income. Here, we also have a response to the common critique that the Independent Living movement prioritises physically disabled people of working-age – rather, independent living is meant to be universally applicable.
This project has received funding from the European Union’s Horizon 2020 research and innovation programme under the Marie Sklodowska-Curie grant agreement No 747027. This document reflects only the author’s view. The Research Executive Agency of the European Commission is not responsible for any use that may be made of the information it contains.
Written by Teodor Mladenov, Marie Curie Research Fellow at ENIL, Teodor.Mladenov@enil.eu