A research project looking at social protection for persons with disabilities in low- and middle-income countries has been a very valuable learning experience for me. It was the first time I have done research on disability, and I found that a lot of my thinking – or lack of thinking – on the topic was based on prejudice or ignorance. Here are five important things I learned, writes Rasmus Schjoedt.
1. An impairment and a disability are two different things
This was not an obvious distinction to me, and I am sure it is not to many others (partly my excuse is that this difference does not translate easily into my native language). Certainly, one of the things we found during our research, is that many social protection programmes in low- and middle-income programmes do not make the distinction.
However, it is important to realise that a medical impairment does not in itself constitute a disability. For example, I have a fairly severe visual impairment, but thanks to my easy access to good eye tests and, for me, relatively cheap glasses and contact lenses, this impairment does not constitute a disability for me.
The disability does not lie in the impairment itself, but in the impairment combined with a lack of access to assistive devices and an environment that is not adapted to the needs of the disabled person. In other words, the problem is not with the disabled person, but with the disabling environment. This social model of disability is enshrined in the UN Convention on the Rights of People with Disabilities (UNCRPD).
2. Most ‘disability benefits’ are not actually benefits for people with disabilities.
When considering social protection cash transfers for people with disabilities, it is more complicated than simply introducing a ‘disability benefit’. People with disabilities need access to both benefits specifically for them, and to mainstream programmes. At least three different types of programmes are important:
- First, people with disabilities need compensation for the additional cost they face as a result of their disability. In the UK, this benefit is called the Personal Independence Payment (PIP) and it is provided on a universal basis (i.e. not means-tested) as fixed weekly amounts, depending on the severity of the disability, as ascertained through a test of how people function in their environment. Unfortunately, hardly any low- and middle-income countries have this type of benefit.
- Second, some people experience disabilities that result in reduced work capacity and need income replacement as a result. This is what in the UK is called the Employment and Support Allowance (ESA). In Denmark, the name of the benefit roughly translates into ‘Early Retirement benefits’. You will notice how none of the two names contain the word ‘disability’. This is because these are not really benefits for people with disabilities, but for people with reduced work capacity. It is important not to conflate these two concepts: social protection programmes often simply assume that people with disabilities are people who cannot work. However, in reality, most people with disabilities want to work and are capable of doing so. The assumption that they are not is damaging to the inclusion of people with disabilities into society.
- Third, old age pensions should be considered as a key benefit for people with disabilities, since disability prevalence increases sharply with age. In fact, disability is often part of the rationale for providing older people with income replacement benefits, although it is often not considered as ‘disability’ as such, but simply as ‘getting old’. Of course, in addition to a pension, older people should still receive benefits to compensate them for any additional cost presented by various disabilities, to help them participate on an equal basis in society.
3. ‘Disability’ is not a simple category
In social protection research and analysis we often treat disability as if it is an easily distinguished category. The reality is that disability exists on a spectrum, rather than as distinct categories of ‘disabled’ and ‘non-disabled’. People with different types of impairment also have vastly different needs. In addition, as mentioned above, disability is not a medical impairment that can or should be diagnosed by a medical professional. Rather, disability arises as a result of the interaction between an impairment and a specific environment.
The implication is that disability assessments need to consider how the individual functions within his or her environment. Unfortunately, most low- and middle-income countries still consider disability to be identical with a medical impairment, and eligibility for disability benefits is often decided based on an undignified and wholly inadequate medical assessment, based on rigid ‘impairment tables’.
There is an urgent need to build better assessment mechanisms in most low- and middle-income countries, learning lessons from countries that have put considerable efforts into improving their systems – most notably Brazil.
4. There is often resistance from Disabled People’s Organisations to the idea of social protection for people with disabilities.
Many organisations of people with disabilities feel that the idea of receiving ‘hand-outs’ moves the focus from adapting the environment and back to a way of looking at people with disabilities as people who should receive charity. This is a mistake. People with disabilities need social protection cash transfers to compensate for the cost of having a disability and as a way to help overcoming barriers to participation in society.
There are many organisations of people with disabilities doing excellent work on social protection, organisations such as the Indian organisation Equals, and many others, who helped us with our research. But in many low- and middle-income countries, DPOs need to become much more active in advocating for the right of people with disabilities to social protection. And DPOs in high-income countries should support them, building on the decades of experience from their own countries.
5. We all have an obligation to educate ourselves on disability issues
Finally, and perhaps most importantly, through this research, and through working with people with disabilities, I have become a lot more aware of the limitations and oversights in my own way of thinking. Most of us are probably to some extent prejudiced and ignorant when it comes to disability. It is important that we try to educate ourselves to become a little less so. In particular when it comes to social protection for people with disabilities, the issues are a lot more complex than is commonly realised, and we as social protection researchers and practitioners need to become a lot better at dealing with them.
Hopefully our recent research can contribute to moving the discussion forward in this important, but so far largely neglected, area. While you wait for our reports to come out, I can recommend Dominic Fritz’s excellent discussion paper ‘Social protection and the social model of disability.’ We can all learn as we seek to make progress on this issue.