International Day of Persons with Disabilities (IDPD), celebrated every year on 3 December, is a United Nations day that seeks to promote the rights, health and well-being of persons with disabilities at every level of society.
This year, the theme for the day is “Amplifying the leadership of persons with disabilities for an inclusive and sustainable future”, which is an opportunity to highlight the work taking place across the Region to facilitate and encourage persons with disabilities into leadership roles, political participation and decision-making processes – particularly where it impacts health systems and the delivery of health services.
WHO/Europe spoke to 3 women – all of whom have disabilities themselves – about how their roles and the mission of the organizations they work for contribute to the inclusion of persons with disabilities in political decision-making.
Bias and barriers
Elena Ratoi, from Chisinau, Republic of Moldova, began her career in gender equality 10 years ago working for UN Women, where she was involved in a number of projects to support the political participation of women.
“As a person with a disability, I am naturally committed to supporting others with disabilities, so I thought that an initiative targeted specifically at disabled women was needed,” Elena explains. “And of course, if we don’t encourage women with disabilities to participate in the decision-making process, we can’t expect policies to be sufficiently inclusive or to accurately reflect the needs of the people they are going to affect.”
In 2017 and then in 2019, she helped to establish a partnership with 2 organizations working in the disability field in the Republic of Moldova, and between them, helped to develop capacity-building training programmes for women with disabilities who were interested or already involved in political and civic participation.
“The programmes covered everything from joining political parties and conducting electoral campaigns, to negotiating with political leaders,” Elena says. “We also ran sessions to help to build self-confidence and prepare the women to serve as elected officials.”
“Encouragingly, some of the women we supported during the 2019 elections went on to become local councillors and to advocate for changes to enhance the lives of persons with disabilities,” Elena says. “One of these councillors was determined to improve access to health facilities after facing difficulties herself. She successfully managed to secure funding to implement various initiatives, including the installation of ramps for wheelchair users.”
However, Elena is concerned that in many countries there still exist discriminatory policies and practices, particularly around the maternal and reproductive rights of women with disabilities, which can only be effectively overcome by the political participation of women in changing policies and attitudes.
“There are instances where women with disabilities have been forced into abortions and where they face bias and barriers in accessing reproductive health services, even to the point where their right to motherhood is virtually ignored,” she says. “This needs to change.”
Inclusive decision-making
Antonella Candiago works in Brussels as a Policy Officer at the European Network on Independent Living (ENIL). She became interested in the field of inclusive political participation after facing accessibility problems herself. But it was only after she began to speak with other disabled people that she realized the scale of the problem.
“I had the opportunity to talk to many people, especially women with a range of impairments, including intellectual disabilities, and got to understand how many are excluded from political participation,” she says. “I became more and more interested in learning how we could include them, to give them the chance to be involved in the decision-making that would affect their futures.”
Antonella remembers, painfully, how she grew up never seeing any people like her represented, which negatively affected how she viewed herself and her own potential. Therefore, giving visibility in these decision-making roles to persons with disabilities is also just as important, as she is keen to stress:
“When you don’t see yourself represented, it leads to feelings of exclusion and marginalization, and makes you think you’re not really entitled to participate or make decisions, even about things like your own health care. For young people these days, it’s really important to see different kinds of disabilities represented to normalize the idea of inclusive decision-making.”
However, Antonella warns that the political participation needs to be authentic and not merely based on the fact that someone has a disability.
“It’s crucial to avoid fake representation, or tokenism. Yes, we need to have people with disabilities as role models, but at the same time, we should be focusing on their professions, their interests, their experiences, their competencies and skills above everything else,” says Antonella.
She and her organization strongly believe in the principles of co-design and co-production, which means bringing together professionals and citizens – in this case, persons with disabilities – to share the power to plan and implement services. She explains this further:
“We train organizations on how they can include and empower disabled people at every stage. For instance, we successfully ran a project using this approach focused on making transportation systems in 7 European cities more accessible, but this could work equally well in health care or any arena where you have an element of service delivery.”
A larger mindset shift
Elena Kochoska from Skopje, North Macedonia, is a Board member at the ENIL and chairperson for the Macedonian Center for International Cooperation. Like the other women we interviewed, she started her career frustrated that persons with disabilities seemed to be invisible and underrepresented in economic and political decision-making, and was determined to do something about it.
“I began to advocate for the effective realization of the political rights of persons with disabilities and for full implementation of the Convention on the rights of persons with disabilities (CRPD),” she says. “This meant not just enabling persons with disabilities to engage in the political sphere, but actually giving them a seat at the political table to make decisions on various issues, not just those related to disability.”
She now works with persons with disabilities – either already active in politics or looking to be more involved within political structures – to equip them with the skills and knowledge to enable them to carry out their roles effectively.
“At the same time, I work with political parties to help to develop their disability policies and programmes based on the CRPD,” she explains, “liaising with other disability organizations doing much of the work on the ground, to ensure that this issue remains high on their agendas.”
Elena firmly believes that leadership and management of the health sector in particular has to be disability-inclusive, as she makes clear:
“This issue is non-negotiable. The sector needs to be more open and needs to involve more persons with disabilities, not just to see us as beneficiaries. For instance, why don’t we have more health workers with disabilities? And all over the world, people with disabilities are still facing similar barriers when it comes to accessing health care or securing jobs in the health sector.”
Adding to this, she says:
“The health sector over the next century will face many challenges, and one of them will be the inclusion of the disability community. But future health policies need to be based on the CRPD and take into account the principles of inclusive equality.”
Elena is clearly passionate about furthering the rights of persons with disabilities, but sees this as a part of a larger mindset shift in our society. As she explains:
“Disability needs to be recognized as just one part of human diversity. Of course, I believe the disability community should enjoy the same rights as others, including the right to independent living, but my vision is that we can work together to create a society where everyone can live the life that they choose; where everybody feels empowered.”
Source:/www.who.int