The changing face of parent advocacy: a long view

Autistic Adult and Non-Autistic Parent Advocates: Bridging the Divide

“…Parents of offspring with other disabilities have already modeled this shift. For example, in some organizations, non-disabled parents have moved from working on behalf of people with learning disabilities to working beside them (Ryan & Griffiths, 2015;Walmsley, Tilley, Dumbleton, & Bardsley, 2017). One of the clearest demonstrations of a shift from "working for" to "working with" has been demonstrated by parents of gay and lesbian offspring; indeed, the entire organization of PFLAG (Parents and Family of Lesbians and Gays) was founded on the concept of straight parents walking beside, not in place of, their gay and lesbian offspring (Broad, 2011;Conley, 2011;Starr, 1986).…”

View of relatives on quality of care: narratives on the care for people with visual and intellectual disabilities

“…Relatives' views and opinions on care for people with disabilities have been explored with respect to the type of (care) accommodation (McConkey et al 2006), palliative care (Bekkema et al 2015), and needs for the relatives themselves, such as financial resources and assistance in care (Arnold and Case 1993). Also, the history of parent advocacy in the United Kingdom has been described since the mid-twentieth century (Walmsley et al 2017). A general view on quality of care and quality of life for people with disabilities from the perspective of relatives, was given by Mattevi et al (2012).…”

Defined by a Label: How Collective Action Brought about Change during the Second Half of the Twentieth Century for People with Cerebral Palsy

“…In Disability and Social Policy in Britain since 1750 (2005), Anne Borsay argues 'the suggestion that without rehabilitation severely disabled people were neither useful nor respected citizens was indicative of an aggressive pursuit of normality'. 23 Derogatory attitudes, shaped by a changing society, impeded progress for many with cerebral palsy and the condition became a 'social problem'. Educationalists and medical practitioners had to observe the formalities of the new welfare state but categorisation of individuals, according to aptitude and level of impairment, centred around the medical condition as a locus of difficulty.…”

“…All right, fair enough, some might have learning difficulties, or other disabilities, the thing is that people did not evaluate the people. 23 These capacity for academic education' where 'only the physical aspect' needed to be 'special'. Collis maintained that in order to prevent a 'new generation of educationally retarded cripples' the medical profession needed to be educated and the intervention of treatment started at a young age.…”

“…whose voices may go unheard, or for those who do not speak at all, and in the absence of consistent advocacy, families can be an important route to publicising their concerns and needs. 23 The issues of cerebral palsy, cannot be simply addressed through employing the social model of disability. Whilst this model did have an impact in terms of accessibility and attitudinal change, individuals required support in ways which the social model could not easily address, therefore achieving the right balance was difficult.…”