The UN Convention on the Rights of Persons with Disabilities
The 2008 UN Convention on the Rights of Persons with Disabilities (CRPD) requires governments to raise awareness of disability and challenge prejudice and discrimination (Article 8), and to ensure equal and effective legal protection against discrimination (Article 5). Earlier global comparative data on attitudes to intellectual disability is limited to a study from 2003, which included ten countries across four continents, and to a 2007 WHO Atlas, focusing on resources but including some indicators of attitudes.
To determine current issues related to persons with intellectual disabilities, we undertook a global study, examining government action as reported to the CRPD Committee and gathering data from 667 disability experts and organisations from 88 countries regarding the extent to which low awareness of intellectual disability and A 779 are continuing concerns, and what is being done to tackle these concerns. The results indicate that in many (mostly high-income and upper-middle-income) countries the general public agrees with inclusion in principle, but often view it as impractical and unachievable. A “not in my own backyard” attitude and a fear that inclusion of people with intellectual disabilities may affect the resources and achievements of those without disabilities, particularly in school and work environments, persists.
In March, 2016, the United Nations Statistics Commission agreed upon the metrics used to measure progress towards, or away from, the new Sustainable Development Goals (SDGs). These so-called indicators define the real-world, measurable counterparts to the targets within the visionary goals of the sustainable development agenda. In the context of health in the SDGs, we wish to highlight the little-known story of the Millennium Development Goals\' (MDG) target on access to medicines. Of the 21 targets in the eight MDGs that permeated the development debate over the past 15 years, it was the only target that was dropped from the MDG report. The lessons learnt from this exclusion have important implications for the design of workable indicators for the SDGs, and even more importantly, for their implementation. MDG 8 was to “develop a global partnership for development”. But the targets of MDG 8 were unique in having no time limit, focusing on “actions to be taken [primarily] by rich countries”, and being “purposefully vague” due to “grossly unequal power relations […] during the negotiations”. Access to affordable medicines was included in MDG 8 at a time when the crisis in access to HIV/AIDS medicines laid bare a globally dysfunctional system of pharmaceutical pricing. This was target 8E: “In cooperation with pharmaceutical companies, provide access to affordable essential drugs in developing countries.” While target 8E was reported on in the separate MDG Gap Task Force reports, the target was omitted from the last six MDG progress reports, which go straight from 8D to 8F (2009–14). The MDG reports do not acknowledge or explain the reason for this exclusion. Target 8E was relegated to a grey zone, reported in some places, and not others: some UN sites list “zero” data available for the target. Although other indicators were neglected in this way (eg, within Goal 7), 8E was the only target with this fate. After we began making inquiries into 8E\'s absence, transformation resurfaced after 6 years of absence in the 2015 MDG report, as a single paragraph acknowledging the paucity of data. Data for access to affordable medicines is notably lacking in comparison to other MDG targets. For affordability and availability of medicines, the MDG Gap Task Force reports averages from a sample of only 26 country surveys over 7 years (2015). By contrast, data for Goal 6 indicators are generally available for more than 100 countries. These observations suggest to us that data collection and reporting for the indicator received less priority than other targets. The decision to deprioritise 8E is not easy to trace. A 2005 Report of the Friends of the Chair recommended that target 8E be amended, deleted, or have “special effort […] put into setting up data collections to provide the information”. The report recommended that “established” indicators that are “closely related to existing data collection programmes” should be favoured. Although we could not find an explicit record of a decision to abandon target 8E, a senior employee in the UN Statistics Division explained by email that “[t]he decision not to report on the indicator for target 8E was made by the WHO representatives in the IAEG [Inter-Agency and Expert Group] group […] A few years ago they decided to focus on HIV/AIDS treatment and stopped reporting on the rest.” It is concerning to find that a decision like this can be made in obscurity without consultation of relevant stakeholders.