Independence and its meaning: ENIL’s monitoring of Article 19 as a struggle for hermeneutical justice

This chapter explores the efforts of disabled people’s independent living movement to negotiate the meaning of independence. It focuses on the work of the European Network on Independent Living (ENIL) – a user-led, user-controlled initiative of disabled people and independent living organisations that has led the fight for independent living in Europe since 1989. I conceptualise ENIL’s monitoring of the implementation of Article 19 of the Convention on the Rights of Persons with Disabilities (CRPD) as a struggle for hermeneutical justice. ENIL has challenged the conventional understanding of independence as self-sufficiency. This conventional understanding has undermined disabled people’s right to live independently and be included in the community. In its stead, ENIL has promoted an understanding of independence stemming from the independent living movement and incorporated in Article 19 of the CRPD. According to this alternative understanding, independence means that one has choice and control in one’s everyday life, including choice and control over one’s support – rather than coping without support. This alternative understanding of independence has guided ENIL’s monitoring of deinstitutionalisation reform and personal assistance schemes in Europe that are discussed in the chapter as instances of disabled people’s organised collective struggle for hermeneutical justice.