Social Structures
Symposium
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Author: Dr Ana María Sánchez Rodríguez, MSCA Fellow and Adjunct Assistant Professor of the Assisting Living and Learning (ALL) Institute
Since 1992, we celebrate the International Day of Persons with Disabilities (IDPD) and this year’s theme is “Leadership and participation of persons with disabilities toward an inclusive, accessible and sustainable post-COVID-19 world”. Similarly, in 2019, the theme was: “Promoting the participation of persons with disabilities and their leadership: taking action on the 2030 Development Agenda”. The IDPD 2019, focused on persons with disabilities and their organisations’ empowerment in order to push forward the Sustainable Development Goals Agenda. The IDPD reminds us of the challenges ahead and the way forward.
Supporting collaborative leadership and promoting meaningful participation of persons with disabilities and their organisations must be a priority. Persons with disabilities need to be engaged in the decision-making processes that affect their lives. To commemorate the IDPD, I’d like to suggest and reflect on the following questions:
- What does it mean to promote leadership and participation of persons with disabilities?
- What has been achieved so far in this regard?
- What are the learnings to bring forward to lead an inclusive, accessible, and sustainable change for persons with disabilities?
We commemorate the IDPD revising the advancement and the regressions in promoting the realization of disability rights. Participation as a principle and a right is recognized in Article 21 of the Universal Declaration of Human Rights and in other human rights international and regional instruments. In the Convention on the Right of Persons with Disabilities (CRPD), Article 29 recognizes specifically the right to participate in political and public life. Furthermore, the committee of the CRPD published and adopted General Comment No. 7 in September 2018. The General Comment No. 7 addresses participation of persons with disabilities and their organisations in the implementation and monitoring of the CRPD. Participation must be full and effective, meaning that persons with disabilities and their organisations should be included in the decision-making processes through a modality of “closely consult and actively involve”, and likewise be properly informed. Leadership and participation of persons with disabilities is important but is not a given by governments and the United Nations’ agencies.
A recent article published by McVeigh et al (2021) analyses the participation of persons with disabilities and their organizations in development programmes and policies. The study launched a Global survey in collaboration with the International Disability Alliance (IDA) and reached out to more than 13,000 people. The study addresses the need for consultation and shared decision-making of organisations of persons with disabilities (OPDs) with governments and the United Nations (UN). There has been progress to engage OPDs at the UN level. The High-Level Political Forum is an example of a UN a decision-making body where the Stakeholder Group of Persons with Disabilities participates. Unfortunately, this instance and others, such as the Conference of State Parties (CSP) of the CRPD, are aloof to grassroots organizations of persons with disabilities. At the same time, OPDs lack the resources and support to participate; it is more likely to see international non-governmental organizations from the Global North engaged. Another issue that impacts disability inclusion in decision-making processes is the low representation of persons with disabilities that are not men, white or physically disabled.
The McVeigh et al. study indicates that participation is not equal across constituencies of the disability rights movement. Young people with disabilities, people with visual impairments and deaf-blindness and other unrepresented groups’ participation and leadership in representative organisations is insufficient. In a recent analysis with a partner of Instituto 17, we explored the disability movement in Latin America by interviewing colleagues from different disability organisations. The disability movement lacks representation and leadership of women, gender-nonconforming, indigenous, rural population and migrants with disabilities.
I started this piece addressing three questions and I’d like to reflect on those. The first question is related to the types of disability leadership and participation we need. Participation is addressed in the CRPD and General Comment No. 7, but leadership is barely touched. I can recall disability leaders and activists who changed the mindsets and pushed forward an inclusive rights framework in the making of the CRPD. The challenges ahead to implement the Convention require supporting and encouraging disability leaders that work in collaboration with different OPDs. The kind of leadership needed is collective and it embraces inclusion within the disability movements across the globe.
In relation to what has been achieved to promote inclusive, effective, and collaborative leadership as well as participation remains uncertain. The increase in the numbers of OPDs participating, for example at the Conference of State Parties of the CRPD, will not tell much of the engagement of persons with disabilities (23 non-governmental organizations were accredited to the CSP 2020 compared to 15 in the CSP 2019). In the past two years the world experienced the consequences of the COVID-19 pandemic. The pandemic made us realize that digital participation could reduce the gaps amongst disability groups. However, digital participation requires infrastructure that is not accessible for most OPDs in the Global South. Social protection, securing jobs, health access and other issues that impacted people with disabilities requires assertiveness in a context of co-opted participation.
In sum, I can only hope that as we claimed to be in an almost post-pandemic world, we have learned from our letdowns. Moving forward to lead an inclusive, accessible, and sustainable change for persons with disabilities will require permanent commitment from governments, UN agencies, as well as international non-governmental organizations. Being inclusive is not the sole issue of a group of OPDs, it must be at the front of the Sustainable Development Goals outcomes.