Written evidence submitted by Dr Tom Shakespeare, University of East Anglia
About me: I am sociologist and ethicist; I have congenital and acquired impairment; I have been active in the disability movement since 1986; I worked in the Disability and Rehabilitation team at the World Health Organization between 2008-2013, where I was an editor and author of the World report on disability (WHO 2011) and International Perspectives on Spinal Cord Injury (WHO 2013) and was also the staff member employed to work on the Task Force on Disability, responsible for mainstreaming disability issues across the Organization.
In this submission, I want to address the following areas:
1.1 DFID is not “at the table”, when it comes to disability and development. While DFID was a pioneer of the “twin track” strategy for disability and development, and has funded innovative projects led by disabled people and their organisations in the past, visibility of DFID in disability and development is now very low. Looking at the DFID website, disability is almost invisible as an issue, and has been for some years. As an international civil servant, I would attend meetings at UN or in member states, and because I am British, would be asked “Where is DFID?”: AusAid, USAID, CIDA, Noraid, Irish Aid, JICA would be represented at these gatherings, but not DFID.
1.2 When we were launching the World report on disability, WHO and World Bank tried to work with donor countries to highlight the findings of the report, and try to raise interest and commitments for implementation of the recommendations. Whereas there were launch events in USA, Ireland, Australia, Finland, Canada and other governments, response from DFID was minimal. There was no UK launch, although I did give a presentation to the DFID diversity group.
1.3 This despite the centrality of disability issues to the priorities of DFID. For example, it has been estimated that disabled children make up a third of out of school children. Any teacher training initiatives in developing countries should also ensure that teachers are trained in how to include disabled children, and that attitudes of policy makers, teachers and parents that disabled children are ineducable or are a low priority should be challenged.
1.4 In the field of health, evidence suggests that approximately 10% of mothers will have some form of impairment or life limiting illness: ensuring that they are included in maternal health promotion efforts is vital. Children with disabilities face higher mortality, may lose out on nutrition, may be excluded from immunisation, and may in some cases be left to die.
1.5 Similar arguments could be made regarding water and sanitation, and in particular economic growth. On all the MDGs, failure to include disabled people and their families will make it harder, and in some cases impossible to achieve the targets: for example, MDG2 universal primary completion has to include disabled children; MDG5b calls for universal access of women to sexual and reproductive health, and “all women” has to include women with disabilities.
1.6 Post-2015, it will be vital to ensure that disabled people are included in development efforts. So far, there has been lots of talk, such as the September 23 UN High Level Meeting, but apparently very little action. DFID should play its part in advocating for disabled people to be explicitly included, both as part of mainstream efforts and in terms of specific actions.
1.7 The huge challenge for the development community is how a country can progress, without leaving disabled people behind. Reviewing evidence for the World report on disability, I became aware of what Nora Groce and Maria Kett have called the “development gap”: in the poorest settings, there is little difference, on some measures (formal employment, poverty) between disabled and non-disabled people, because everyone is poor and excluded. As countries develop, disabled people fall behind, because they are the ones who are not in school or formal employment: inequality actually increases.
1.8 Including disabled people in development efforts is a human rights obligation. UK has ratified the Convention on the Rights of Persons with Disabilities, and is therefore committed to progressive implementation of the Articles. Article 32 on international cooperation highlights issues such as inclusion of disability, capacity building, technical cooperation, research etc. It was notable that when UK was reporting on progress towards implementation of the CRPD, the response regarding Article 32 was rather more scant than on other Articles.
1.9 Listening to disabled people and their organisations is very important. However, I worry that some disabled people’s organisations seem not to be very representative of the diversity of disabled people in the world, and their different viewpoints. I find this particularly the case with some LMIC DPOs, which can be dominated by a male metropolitan middle class elite. DFID should engage with the diversity of the disability community, both domestically and on a global scale. For example, people who become disabled as part of the ageing process are much less visible than people with congenital or traumat-related impairment.
2.1 How DFID could change. Returning to the “twin track” approach, it is well known that this comprises targeted work to meet the particular needs of disabled people, for example rehabilitation or social assistance, together with barrier removal to ensure that disability is mainstreamed across all development activities. I think the work I did with WHO to mainstream disability showcases some of the necessary elements of a successful strategy:
2.1.1 Leadership from the top: the Director General initiated the Task Force on Disability, and it was chaired by a WHO Assistant Director General, Dr Ala Alwan. A Director, Dr Etienne Krug, provided operational leadership. I was able to point to these champions to open doors and ensure that people realised that disability was an organizational priority. Dr Chan mentioned disability inclusion in several key speeches during the WHO reform period and spoke at the launch of the World report on disability. She also supported a World Health Assembly resolution in 2013.
2.1.2 A staff member with disability driving change: I was a visible and confident advocate of disability inclusion. I had face to face meetings with more than 50 directors where we discussed the priorities and opportunities for disability mainstreaming. I visited the regional offices in Europe, Americas, Western Pacific and Eastern Mediterranean region and gave presentations.
2.1.3 Mainstreaming comprised work with technical departments such as Reproductive Health Research or Health Action in Crises. This led to disability-inclusive initiatives, such as a guidance note on sexual and reproductive health for persons with disabilities, and a policy brief on HIV and disability, and resources on disability in disasters.
2.1.4 Barrier removal comprised work with key WHO service departments. For example, I worked with the Human Resources team to train members of selection panels on disability equality. We achieved a “welcome statement” on advertisements that stressed diversity in general, rather than being limited to women and under-represented nationalities. We promoted the concept of reasonable accommodation and explored how this could be delivered for staff and interns with disabilities. I also worked with WHO Press and the Communications teams to explore making information resources more accessible. For example, this included making WHO reports available for people with visual impairment and Easy Read versions for people with intellectual disabilities. WHO videos were subtitled for the first time. We also audited HQ and regional offices for disabled access, and invested in barrier removal around buildings.
2.1.5 Regular face-to-face meetings were necessary to ensure that agreements were followed up and implemented. There were also quarterly meetings of the Task Force itself, which included a representative from all the key service sections, all the headquarters clusters, and the regional offices. This meant that disability became an issue for the whole organisation, not just for the rather small Disability and Rehabilitation team.
2.2 I note that AusAid conducted a similar process with their Disability Inclusive Development strategy, but that they were able to be more systematic, for example in ensuring that all staff members had training in disability equality, and that there was a detailed change process to ensure that everyone understood and promoted the strategy. In retrospect, I think this more structural approach to implementing disability inclusion would have been advisable for WHO, and would be preferable for DFID.
3 While disability is not simply a health issue, health is a vital issue for many disabled people. The strong emphasis that many British and developing world activists place on the social model of disability should not obscure the fact that for many of the world’s billion disabled people, access to health is a pressing concern. For example, International Perspectives on Spinal Cord Injury (WHO 2013) highlights how many people who develop SCI die within a year or two of injury – as was the case in the UK, prior to the pioneering work of Ludwig Guttman after World War 2. What is lacking is not high tech medicine, but nursing and health information and assistive technologies (wheelchairs, cushions, catheters) to prevent avoidable health problems such as urinary tract infections and pressure sores.
3.1 Similarly, mortality is disproportionately high for babies and children with disabilities, often because of neglect, in some cases verging on manslaughter. Infants may not get adequate nutrition, may not be immunised, or may not be considered valuable enough to merit health and education. Evidence from research with infants with spina bifida in Uganda published by Warf et al (2011) highlights how comparatively simple interventions – in this case a Community Based Rehabilitation programme ensuring that families were visited every couple of weeks – could make the difference between life and death: for infants in the CBR programme, five year mortality was equivalent to non-disabled peers. For infants outside the programme, it was three times higher.
3.2 Despite the salience of health, evidence from the World report on disability (WHO 2011) shows how disabled people were twice as likely to find healthcare provider skills and equipment inadequate to meet their needs, three times as likely to be denied care, and four times as likely to be treated badly. We know from UK experiences that people with intellectual disabilities and mental health conditions are particularly likely to receive worse care, and consequently to have higher mortality.
3.3 Therefore I would advocate for DFID work on health to include disability, not simply as an issue of prevention – although prevention of avoidable impairment must remain a priority – but also as an issue of access and equity. In particular, training of health professionals to understand the health and human rights of disabled people should contribute to more appropriate, accessible and inclusive services. I will never forget the testimony of one disabled woman in West Africa, who reported that, when she presented at a hospital in the early stages of labour, health workers laughed at her and asked how on earth she could have managed to get pregnant. Another aspect of health systems which needs to be prioritised is supply of rehabilitation personnel – mid-level rehabilitation therapists in particular – which is almost always inadequate in low income countries, even though rehabilitation interventions can ensure a person returns to education and employment after having an impairment such as SCI or brain injury or being born with cerebral palsy.
4 Finally, to say a few words about disability data. WHO will doubtless make their own submission on this topic. My own opinion is that there are two different needs. Given that data is lacking, there is an urgent need to understand the prevalence of disability and the experience of disabled people, particularly the role of disabled barriers. This requires effective survey approaches based on the ICF, such as the WHO Model Disability Survey which is currently in cognitive and field testing.
4.1 However, there is another need which is simpler, and for which the Washington Group’s Six Questions have always seemed to me to be a practical solution. This is the disaggregation of disability data, to enable monitoring of service use and outcomes for disabled people. Unless it can be shown how disabled people are experiencing particular needs, or how those needs are being met, then it will be much harder to develop strategies for disability inclusion.
4.2 Conceptually, my understanding of disability is somewhat different from either the “medical model” or the “social model”. In line with the ICF, I see disability as a multi-factorial phenomenon (Shakespeare 2006). Taking a critical realist perspective, I understand disability as impacting at different levels – medical, psychological, physical environment, social, educational, employment, law, politics, culture etc. We can intervene at one or more of these different levels – for example, by providing medical interventions or by removing barriers, or by passing anti-discrimination laws, or promoting awareness campaigns. All these different responses are useful, in principle. For certain groups or in certain contexts, one type of intervention may be a higher priority than another.
4.3 When I worked with the Task Force on Disability, Directors of WHO technical departments would always first ask me about the data on disabled people in their area of concern. If I could not point to public health evidence that disabled people were disproportionately at risk, they would not take my human rights arguments so seriously. A combination of disaggregated data, “quick and dirty” if need be, together with other human rights and economics arguments is the only way to persuade colleagues and also governments in low income countries that investment in improving the lives of disabled people is a good buy and will produce significant outcomes at a population level.
4.4 Therefore I hope that DFID will invest in monitoring and evaluation, support governments in LMIC to invest in disaggregated data and disability surveys, so that we can know better what the problems are, and how they can be remedied. It was very striking, as we prepared the World report on disability, that we could not make firm evidence-based recommendations in many areas, because the data was lacking.
References
Shakespeare T (2006) Disability Rights and Wrongs, Routledge, London.
Warf BC, Wright EJ, Kulkarni AV (2011) Factors affecting survival of infants with myelomeningocele in southeastern Uganda. J Neurosurg Pediatr 7:127–133
WHO (2011) World report on disability, WHO Geneva.§
WHO (2013) International perspectives on spinal cord injury, WHO Geneva.
December 2013