VIEW: Research cannot be a vehicle for reproducing disadvantage and oppression, as it has been in the past

Ableism – or discrimination against people with disabilities – has had detrimental impacts on immigration policies and immigrants, suicide rates among people with disabilities, and social acceptance and stigmatisation by society. Unfortunately, many have seen ableism have an accelerated impact during the coronavirus pandemic.

Research in this field, could help to instigate social change, policy reforms, and improved environments for people with disabilities. Alberto Vásquez Encalada is a Research Coordinator at the Office of the UN Special Rapporteur on the rights of persons with disabilities, who believes strongly in the positive impacts the right research can have. However, to be truly effective, the impacts of ableism need to be taken into consideration.

In this interview, Encalada shares his views on how research can make a difference, how research has failed to help in the past, and the importance of involving people with disabilities in research programs as researchers.

  • In your view, is there enough research being done into how to improve the lives of people with disabilities? Why or why not?

Research is a powerful tool and it has the potential to both preserve the status quo, as well as trigger social transformation. With respect to persons with disabilities, it is not a question of whether the quantity of research carried out is enough, but it’s a matter of the frameworks and methods used. 

Persons with disabilities have been the objects of study and research throughout the centuries. Most research was focused on how to cure or “correct” impairments, which led to the medicalization of disability and the spread of ableist beliefs that the lives of persons with disabilities are of less value or less quality. Knowledge and research were conditioned by these norms and standards and continued to perpetuate the exclusion of people with disabilities in society. Disability was not understood as an identity nor a part of human diversity.

We need more research seeking out what are the lived experiences of persons with disabilities and what they would deem to be improvements to their own lives. To achieve this, research must involve persons with disabilities as active participants – as partners, as researchers themselves – in the design, implementation and evaluation of studies, to respond to their concerns as equal members of, and contributors to society. Research should be participatory and emancipatory, to empower individuals and groups, and, above all, must refrain from being a vehicle for reproducing disadvantage and oppression.

  • What is the role of research in the disability sector, and how has this changed in the last ten years? 

The biggest game changer for persons with disabilities in the last years is the UN Convention on the Rights of Persons with Disabilities (CRPD). This treaty entered into force in 2008 and introduced into international law the human rights based approach to disability. It is unique in the fact that it was developed with unprecedented participation of civil society, in particular, people with disabilities. As such, the CRPD enshrines principles and rights which are relevant for research and should serve as guidance for research, such as respect for their inherent dignity and individual autonomy; respect for difference and acceptance of persons with disabilities as part of human diversity and humanity; their full and effective participation and inclusion in society, among others.

The CRPD questions the idea that persons with disabilities are exclusive to the “disability sector”; they belong first and foremost to wider society, as everyone else. In this vein, it is not only disability-specific research which concerns persons with disabilities, but all research: research on poverty, climate change, urban planning, political participation, etc. Without ensuring inclusion of persons with disabilities and the collection of their experiences, as well as disaggregated data in research, they will continue to be invisible and left behind.

The CRPD has opened up a new era of rights based research and projects – research focusing on eliminating inequalities, eliminating segregating, oppressive and harmful practices such as institutionalisation, forced medical treatment, involuntary hospitalisation, and promoting community based support, supported decision-making, inclusive education, and political participation.

And this is having an impact.

For example, my organisation in Peru, SODIS (Sociedad y Discapacidad), together with the disability movement, took forward such research leading to a landmark legal reform on legal capacity which has been recognised and welcomed globally.

  • How are researchers currently collaborating internationally to ensure learnings and successes are shared?

While the CRPD ushered in the rights based approach to disability, it has yet to be embraced across all sectors, including in the field of research. Some research today continues to contradict basic human rights standards and continues to yield the voices and experiences of persons with disabilities to the “evidence” of “experts”.

And this is not an exclusive practice of the medical or health industry, it also involves human rights scholars and social scientists whose research and projects seek to justify discriminatory practices.

On the other hand, there are an increasing number of global agencies, governments, and human rights experts aligning with the standards of the CRPD as well as the Sustainable Development Goals, calling for more disaggregated data, investment and research into ensuring persons with disabilities are not left behind.

Disability rights research networks are growing across universities, along with partnerships with governments and the private sector to foster research and projects into innovation relating to assistive technology, participation, inclusive design and inclusive culture. Moreover, persons with disabilities and their representative organisations are increasingly visible and recognised as key partners across all agendas. And new networks are emerging, for example, the Latin American Network of Psychosocial Diversity (Redesfera Latinoamericana de la Diversidad Psicosocial – Locura Latina), of which I’m a member.

  • What improvements in disability research do you think should be prioritised and actioned in 2020?

The COVID-19 pandemic has been a wake up call to the disability community, demonstrating that people with disabilities are still among the furthest left behind. It has again exposed the inherent risks and wrongs of institutionalisation – not only for persons with disabilities but also for older persons. It is an inhuman way to live and to die, segregated and confined apart from the community, subject to greater risks of neglect and violence.

While the pandemic has been a tragedy in those respects, it also brings a new opportunity to challenge the practice of institutionalisation and to call for more data and research on how to accelerate the transition from institutional care to community support.

The long-term socio-economic effects of the pandemic have also highlighted the importance of having robust social protection systems. I would expect an increase in research on how to make social protection programmes more inclusive of persons with disabilities, so they can cover the extra cost of living with a disability, respond better to their disability-specific needs, and provide adequate incentives to enter and stay in the labour market.

About the expert

Alberto Vásquez Encalada works as Research Coordinator at the Office of the UN Special Rapporteur on the rights of persons with disabilities. He is a Peruvian lawyer and holds an LL.M in Disability Law and Policy from the National University of Ireland, Galway. He has served as a consultant to various UN agencies concerning disability and mental health-related issues, including ILO, OHCHR, UNICEF and WHO. In Peru, he was actively involved in the drafting, advocacy and monitoring of laws and policies relating to persons with disabilities, and worked at the Ombudsperson Office and the Peruvian Congress. He is also president of the NGO Society and Disability – SODIS and a founding member of the Latin American Network of Psychosocial Diversity.

Image description: Headshot of Alberto Vásquez, a Latino man with curly dark hair and beard, wearing glasses, a white shirt and black blazer. He is looking straight ahead and smiling, seated in the Human Rights Council Room of Palais des Nations in Geneva. Photo by Federica Settimi.