Promoting the sexual and reproductive health rights of women and girls with disabilities
This blog was written by Safia Nalule Juuko: disability activist, Ugandan MP and founder and board member of HURIWD, Uganda – an organisation campaigning for the Human Rights of Women and Girls with Disabilities. Safia is also a founding member of AmplifyChange as a new in-dependent not-for-profit organisation supporting civil society advocacy on sexual and reproductive health and rights (SRHR).
International Day of Persons with Disabilities this year comes at a time when COVID-19 has starkly exposed the challenges and inequities that persons with disabilities face. Its focus on disabilities that are less visible is a timely and important moment to raise awareness of disabilities such as mental ill-health, sight or hearing loss and learning differences that impact so much on people’s lives. We have seen the incidence of mental ill-health as well as gender-based violence increase significantly during the COVID-19 pandemic. The restrictions imposed because of COVID-19 have especially increased the isolation that people with disabilities experience. COVID-19 has massively exacerbated the lack of access to care and services for people with disabilities and highlights the continuing failure to secure and protect their human rights.
In its World Health Report on Disability, compiled nearly 10 years ago, the WHO indicated that some 15% of the world’s population – more than 1 billion people – live with disability, with some 450 million people with a mental health condition. I have no doubt that these figures have been made much worse by COVID-19, and reflect the continuing neglect of disability as a priority within the health and social care services of many countries. Disability remains a profoundly neglected issue when it comes to its priority, planning and budgeting within health and care services, despite the obligation of countries to promote the full realisation of all human rights and freedoms for persons with disabilities under the UN Convention on the Rights of Persons with Disabilities. As advocates we have to call loudly and persuasively to change this if the rights and needs of people with disabilities are to be fully met.
A fundamental aspect of exclusion people with disabilities experience is with respect to their SRHR. Even in the absence of the health emergency brought about by COVID-19, SRHR are elusive for too many people with disabilities. This happens for many reasons, whether through physical barriers to essential services, lack of disability-sensitive services and information, or because of stigma and discrimination. In particular, young people and women with disability often lack access to comprehensive sexuality education and dignified menstrual health solutions, and COVID-19 lockdowns will have made this worse. Health care workers themselves may also lack the awareness, understanding and skills needed to respond to the needs of people with disabilities. This is especially the case with SRHR, where stigma and discrimination directed towards people with disabilities and their SRHR denies them a fundamental element of their rights and personal fulfilment.
As a Board member of HURIWD in Uganda – a community based organisation led by women with disabilities – I am proud of our self-led work with health professionals to define how SRHR services can better meet the needs of women and girls with disabilities. The lack of information on the experiences and needs of women with disabilities is a significant obstacle to more inclusive policy and services, as is the limited evidence on how best to address barriers to inclusion in SRHR care and services.
Obtaining good information on the SRHR needs of people with disabilities, and availability of services that meet them, is a key step in bringing the issue to the attention of policy makers and health providers. So our approach has been to collect evidence to spur action – to document the situation in districts, identify the gaps and give policy makers a clear indication of what is needed in terms of resources and response. This also gives me, as a Parliamentarian, the information I need to call for action and keep a spotlight on the ensuring gender and disability are fully and properly reflected in policies, plans and budgets.
I am proud also to be a founding member of AmplifyChange as a new independent and not-for-profit fund to support civil society advocacy on all aspects of SRHR. In focusing on the most marginalised and vulnerable, I am pleased that AmplifyChange supports and will continue to support advocacy to champion and secure SRHR with groups working across a wide range of disability needs. AmplifyChange responds to the needs identified by, and the action demanded by, disability led groups themselves. Current support to help integrate disability rights and SRHR is summarised in our portfolio analysis. AmplifyChange investment in organisations of people with disabilities has almost tripled since 2018, and over 10% of all grants focus specifically on improving SRHR for people with disabilities. For me it clearly shows the rising demand for support for SRHR advocacy among civil society groups championing the rights of people with disabilities and led by people with disabilities.
In the past year of the pandemic, AmplifyChange has responded rapidly to help mitigate the impact of COVID-19 on the work of the groups it supports. Through its AmplifyChange Learn platform, it is sharing guidance and lessons for the groups it supports on managing their work in a health crisis, and is also providing and signposting resources for groups working with marginalised and vulnerable people on COVID-19. AmplifyChange is supporting groups highlight the impact of COVID-19 and respond to the challenges it poses to the lives of people with disabilities who otherwise could be excluded from wider efforts to manage the pandemic. Our ultimate aim of course should be to ensure that such responses are not exceptional. They should be part and parcel and a fundamental element in any and every effort to improve all people’s health and rights.
