Part I The concepts: The human rights framing of disability are assumed to have a disability. This makes sense if the goal of the legislation is to tackle social and attitudinal barriers in relation to disability. Likewise, it makes sense to extend the same protection to those who may previously have had a disability but who do not presently have that disability. For example, if knowledge about a person’s past health status is widely known then it is foreseeable that some people may react negatively or discriminate against the person on the basis of that person’s (previous) disability. A contemporary flashpoint involves so-called ‘genetic discrimination’, which refers to the discriminatory use of genetic information which may be required in relation to job applications or applications for insurance or financial credit. This information can be used negatively to exclude persons with disabilities – and those who may have a predisposition to acquire a disability in the future – from employment, insurance services and financial credit. The Genetic Information Non-Discrimination Act was enacted by the United States to protect people against these dangers and much thought is being given to enacting similar legislation in other countries.49 The UN CRPD’s prohibition of discrimination “on the basis of disability” is broad enough to encompass discriminatory behaviour against those who do not presently have a disability but whose genetic predisposition makes them susceptible to the onset of a disability later in life. NHRIs should be particularly attentive to the many ways in which technology can be harnessed positively for persons with disabilities, as well as used negatively to further exclude them. 1.7. STATISTICS AND DATA: MAINTAINING A FOCUS ON BARRIERS, NOT PREVALENCE The move to the human rights model on disability has implications for data collection and analysis. In the past, data was mostly collected to determine the prevalence of disability and particular kinds of disabilities. This was commonly defended as a way to assess numbers and needs in order to plan programs and services to meet those needs. However, the human rights frame requires us to go well beyond this narrow agenda in order to dismantle the barriers facing people with disabilities. We need, therefore, to collect data that can help build a richly textured picture of the status of persons with disabilities: the barriers they face, the opportunities they have, the level of inclusion they enjoy in their communities and the impact of multiple identities and levels of discrimination. That is why, rather uniquely, the UN CRPD contains an article dealing with statistics and data collection (article 31). The reality, however, is that most data sets on disability continue to focus on prevalence and do so in an impairment-specific way. They tend not to measure the gap between abstract rights and the current status of persons with disabilities. This requires a focus not on the prevalence of disability but on the civil status of persons with disabilities. Doing this properly requires the development of clear and detailed indicators.50 OHCHR distinguishes between three different sets of indicators: • Process indicators, which focus on the State commitment to addressing human rights issues • Substance indicators, which focus on the laws, policies and programs that help the State deliver on its human rights commitments • Outcome indicators, with a focus on how individuals actually experience or enjoy their rights.51 There are several projects underway in different parts of the world to develop indicator sets in relation to disability and, specifically, the UN CRPD. Working closely with the European Union Academic Network 49 P. Blanck, A. De Paor and G. Quinn (eds.), Genetic Discrimination: Transatlantic Perspectives on the Case for a European Level Legal Response, 2014. 50 Secretariat to the Convention on the Rights of Persons with Disabilities, ‘United Nations Expert Group Meeting on Disability Data and Statistics, Monitoring and Evaluation: The Way Forward – a Disability Inclusive Agenda towards 2015 and Beyond’, 8-12 July 2014; available at www.un.org/disabilities/documents/egm2014/EGM_FINAL_08102014.pdf. 51 OHCHR, Human Rights Indicator: A Guide to Measurement and Implementation, 2012; available at www.ohchr.org/Documents/ Publications/Human_rights_indicators_en.pdf. Chapter 1: The human rights re-framing of disability | 19