Independent Living

The concept of Independent Living (IL) is much older than the UN Convention on the Rights of Persons with Disabilities (‘CRPD’). It has played a key part in the drafting of the CRPD, especially Article 19, but is also underpinning other articles, none of which can be realised without independent living. Article 19 sets out the right to choose where, with whom and how to live one’s life. This allows for self-determination upon which independent living is based. There is a continuous debate on independence vs. interdependence; ENIL considers that all human beings are interdependent and that the concept of independent living does not contravene this. Independent living does not mean being independent from other persons, but having the freedom of choice and control over one’s own life and lifestyle.

ENIL defines independent living as the daily demonstration of human rights-based disability policies. Independent living is possible through the combination of various environmental and individual factors that allow disabled people to have control over their own lives. This includes the opportunity to make real choices and decisions regarding where to live, with whom to live and how to live. 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. 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. It is necessary to point out that independent living is for all disabled persons, regardless of the gender, age and the level of their support needs.

The right to independent living

The right to live independently and to be included in community is set out in Article 19 of the UN Convention on the Rights of Persons with Disabilities (CRPD). Article 19 requires States Parties to the Convention to ensure that persons with disabilities “have the opportunity to choose their place of residence of where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement”. They must be provided with a range of community-based services “necessary to support living and inclusion in the community, and to prevent isolation or segregation”. Mainstream services and facilities must also be made accessible “on an equal basis to persons with disabilities” and “responsive to their needs”. According to the Committee on the Rights of Persons with Disabilities (CRPD Committee), Article 19 is “one of the widest ranging and most intersectional articles” and “integral for the implementation of the Convention across all articles”. Without independent living, disabled people are unable to exercise many other rights.

General Comments, adopted by the CRPD Committee, provide authoritative guidance to the States Parties, and should be used by them to interpret their obligations under the CRPD. General Comment 5 on living independently and being included in the community sets out the States Parties’ obligations under Article 19, and is key to promoting implementation of the right to independent living in practice. It includes, among other, definitions of independent living, institutional care and personal assistance.

According to the General Comment 5, independent living/living independently means that “individuals with disabilities are provided with all necessary means to enable them to exercise choice and control over their lives and make all decisions concerning their lives. Personal autonomy and self-determination are fundamental to independent living, including access to transport, information, communication and personal assistance, place of residence, daily routine, habits, decent employment, personal relationships, clothing, nutrition, hygiene and health care, religious activities, cultural activities and sexual and reproductive rights.”

Various organisations have developed useful indicators on how to monitor the implementation of Article 19 CRPD, including the Council of Europe Human Rights Commissioner and the EU Fundamental Rights Agency. The European Network of Academic Experts in the Field of Disability – ANED (currently referred to as the European Disability Expertise – EDE) has published a series a country reports on the right to independent living in 2019, including a synthesis report on the situation in Europe. Their reports are available here.

A brief history of the independent living movement

The independent living movement started in the United States in the late 1960s when several disabled people attended a “crip camp” (summer school for disabled activists) and shared their frustration with the general exclusion of disabled people from mainstream American society. In 1972, some of these activists opened the first Centre For Independent Living (CIL) at the University of Berkeley in California. From there, the independent living movement was born. Adolf Ratzka, who contracted polio as a teenager in Germany, won a scholarship and went to Berkeley, where he was inspired by the concept of independent living. He then moved to Sweden and created the Stockholm Cooperative of Independent Living (STIL) in the 1980s. In the United Kingdom, John Evans and other residents of the Le Court institution established Project 81, in order to become free and to live in their own homes with personal assistance (paid through personal budgets). In 1989, several disabled activists from around Europe met in Strasbourg to formulate a new pan European independent living movement – ENIL. In 1990, ENIL adopted its seven principles of independent living. Our publication “Independent Living Heroes – past, present and future’, introduces some of those who made ENIL what it is today – a strong movement of disabled people for independent living.

“Independent Living is a philosophy and a movement of people with disabilities who work for self-determination, equal opportunities and self-respect. [….] Independent Living means that we demand the same choices and control in our every-day lives that our non-disabled brothers and sisters, neighbours and friends take for granted. We want to grow up in our families, go to the neighbourhood school, use the same bus as our neighbours and work in jobs that are in line with our education and interests, and start families of our own. Since we are the best experts on our needs, we need to show the solutions we want, need to be in charge of our lives, think and speak for ourselves – just as everybody else. To this end we must support and learn from each other, organize ourselves and work for political changes that lead to the legal protection of our human and civil rights. We are profoundly ordinary people sharing the same need to feel included, recognized and loved. As long as we regard our disabilities as tragedies, we will be pitied. As long as we feel ashamed of whom we are, our lives will be regarded as useless. As long as we remain silent, we will be told by others what to do.” Adolf Ratzka

Kapka Panayotova, who passed away in 2021, was a key figure in promoting Independent Living in Central and Eastern Europe and a long-time President of ENIL. In her native Bulgaria, as well as in the neighbouring countries, she challenged institutions, service providers and governments, and empowered countless disabled people to fight for their right to live independently. Kapka was sometimes referred to as the “Good Witch of Independent Living”. To find out why, please watch these two interviews – interview one and interview two.

Twelve pillars of independent living

In 1981, Centers for Independent Living (CILs) in the UK went on to define seven needs of independent living, based on the five core services developed at the first CIL in Berkeley. They were: information, peer support, housing, equipment, personal assistance, transport and access. These became a guide for setting up of CILs at the time, and are still a useful reference for today. Later, in 2010, the seven needs were expanded by the Hampshire Centre for Independent Living in the UK into the so-called ‘twelve pillars of independent living’, sometimes called the ‘twelve pillars of full citizenship’. Essentially, these are the basic rights needed for disabled people to live independently.

Appropriate and accessible information
An adequate income
Appropriate and accessible health and social care provision
A fully accessible transport system
Full access to the environment
Adequate provision of technical aids and equipment
Availability of accessible and adapted housing
Adequate provision of personal assistance
Availability of inclusive education and training
Equal opportunities for employment
Availability of independent advocacy and self-advocacy
Availability of peer counselling

ENIL’s work to promote independent living

ENIL advocates for independent living for all disabled people. We do this in different ways. For example, we fight against the hijacking of independent living terminology by raising awareness about what independent living means and promoting independent living definitions. We have developed a Myth Buster on Independent Living, which has been translated into many languages. To improve understanding of what Independent Living means, we have published factsheets on independent living and children, independent living for people with intellectual disabilities, and independent living for people with mental health problems.

ENIL monitors the implementation of independent living at the European level – through our Independent Living survey – and we disseminate this information through shadow reports, briefings and other types of policy papers. In 2017, we carried out research on barriers to independent living outside Europe. This report tried to establish if the understanding of independent living was different in other countries. It found that independent living is relevant in all cultural contexts, but that many barriers remain. Through our Independent Living Research Network – ILRN, we try to connect research and advocacy, and we regularly promote emerging research on independent living.

ENIL promotes examples of good practice, thus showing governments what needs to be done for disabled people to have access to independent living. Our priority area is personal assistance, as a key tool for independent living, but we also promote other community-based supports and services, as well as assistive devices, access to housing etc. Our work on deinstitutionalisation is also of relevance, as independent living for everyone is not possible, until all institutions are closed.

Our campaigns, such as the Freedom Drive and the European Independent Living Day, provide our members and other independent living activists with opportunities to connect and to promote independent living in their countries.

ENIL empowers disabled people to advocate for change in their own countries, and supports them in establishing Centers for Independent Living and other grassroots initiatives. Our Independent Living Manual provides activists with tools for change. All of the resources and campaigns mentioned in this second can be found on our website.

Why does ENIL use the term ‘disabled people’?

The term ‘disabled’ is associated with the social model of disability that originated in the UK in the 1970s. Back then, a group of disabled activists called UPIAS drafted a Manifesto, where they drew a sharp distinction between impairment and disability. They considered that impairment is related to biological differences and the ways how people’s bodies and minds are functioning. On the other hand, disability is a form of restriction unjustly imposed on people with impairments because of the way how society is organised. Thus, the idea was that disability is a form of social oppression. Later in the 1980s, Mike Oliver, a renowned disability studies scholar first coined the phrase “social model of disability”. Disability was framed not as a personal characteristic which person-first language may suggest, but as a form of social oppression.

People, thus, cannot ‘possess’ disability but are rather disabled by society through the process of disablement (due to various forms of disabling barriers). This is an important point for the development of politicised disability identity and this idea represents the core of the independent living movement. Increasingly, disabled people around the world are choosing to identify as ‘disabled’ (by society).

The CRPD recognizes that disability is an evolving concept, but does not define it. Based on the negotiation process and travaux preparatoire, it is clear that a definition of disability was intentionally left out. Only a descriptor was used in Article 1, which merely says who can be considered as ‘persons with disabilities’. This is widely discussed in legal literature and CRPD commentaries. During the CRPD negotiation process, many disabled activists were proposing the term ‘disabled’ as the term which best reflects the social model of disability. However, the compromise was made to leave the person-first language in the CRPD, as it was considered that it would be easier to translate to other UN languages.

Because of the lack of understanding of the social model of disability and disabled people’s identity and activism, some documents make the mistake of saying that the term ‘disabled people’ is derogatory.