Irene Valerezo in an image from the UNFPA exhibition “Wanted: A World for a Billion” to demand equal rights for people with disabilities. Lauren Anders Brown (UNFPA)
Irene Valarezo (Santo Domingo, Ecuador, 29 years old) is a source of experiences about the difficulties that people with disabilities have to be recognized as owners of their bodies, especially in relation to their sexuality. The barriers are physical and social, he explains. “When my gynecologist tells me I need to have a mammogram, he always does an echo, which I know is not the same, but the mammogram machine is not adjusted.” The device is not suitable for performing the test because this woman from Ecuador has cerebral palsy. But the biggest wall she’s encountered is stigma. “I take birth control, of course as a precaution, but also because I have an acne problem; and a few days ago i told my mum to buy them because i ran out of them and my mum looked at me in surprise ‘will you take them?’ And I replied that we are not in the 19th century,” he says with a smile. “This is in a family with education and knowledge on the subject, but imagine one with different concepts… It’s difficult for them to see us with the ability to choose and for us to experience our sexuality too.” want. They see us as children, they infantilize us. Many people still believe that we are asexual beings.
“The stigma is at its worst because many people with disabilities are considered passive. They are told that someone needs to take care of them. They have no autonomy,” agrees Kartik Sawhney, co-founder of the Global Network of Disabled Youth. “In the developing world, but also in many developed countries, people with disabilities do not have enough information about sexual health and do not feel comfortable talking about it or having to talk to their caregivers about it because it is a sensitive issue.” In her view, this lack of knowledge about their rights puts them in a situation of greater vulnerability to gender-based violence, female genital mutilation, abuse, unwanted pregnancies and forced sterilizations. “A lot of things like that, which are very common, but they’re a lot more common in the disabled community than in the non-disabled community.”
The data proves him right. According to data from the United Nations Population Fund (UNFPA), children with disabilities are three times more likely to experience sexual abuse and women up to 10 times more likely to experience gender-based violence. “Many endure health practices such as forced sterilization and abortion, as well as abusive treatment,” denounces Natalia Kanem, executive director of the organization, in a statement to mark International Day of Persons with Disabilities, which is observed annually from 3 December onwards. Article 25 of the Convention on their Rights (2006) states that they should “enjoy the highest attainable standard of health without discrimination”, but the reality is that “few countries provide sufficiently high quality services to the collective”, warns the World Health Organization (WHO ). They are three times more likely to be denied medical care. And when they do, they are often mistreated: four times more than any other patient. And sexual health services are no exception.
More than a billion people – about 15% of the world’s population – live with a disability
Valarezo has a degree in Political Science, a Masters in Social Inclusion from the University of Barcelona, athlete and activist and works as a UNFPA adviser on the We Decide program. Her goal is for the Sexual Health Agency’s programs to include people with disabilities so that everyone knows (and exercises) their rights over their bodies, does not suffer abuse, controls their motherhood, and has access to modern contraception when they do want it. This includes adapted teaching materials, the dismantling of architectural barriers in clinics and the training of medical staff. For this, the organization has only one funder: the Spanish Cooperation Agency, which saw the opportunity to support an initiative in line with its human rights and feminist approach. They started with Ecuador, Morocco and Mozambique, with an endowment of 3.8 million since the project started in 2016. “We want others to join to increase the number of countries,” says Leyla Sharafi, Gender -Advisor to the UNFPA Human Rights Department. “There’s a misconception that these people shouldn’t have sex, or they shouldn’t have relationships, or they shouldn’t have to think about access to contraception or family planning.”
More than a billion people – about 15% of the world’s population – live with a disability. “We’re not such a small minority, we’re quite a large minority,” ironically Valarezo. With this argument he demands more attention for the collective, but above all more voice and voice. His aim is not only to remove architectural barriers in health centers (“but adequate ramps, not a cement mountain like here in Ecuador,” he laughs), but also to change the language and thus the way people are viewed as.
“The whole taboo around sexuality. For example, whether you want to start a family or not. It has to do with our autonomy and legal capacity. But the idea remains that we will reproduce people who are struggling or who are not going to be productive in their lives. I also want to have a baby and not make it look weird. We can obviously plan it with the couple because we don’t have to be irresponsible either,” he reasoned. In this sense, Valarezo calls for more education for those who decide to become mothers, especially for those living with an intellectual disability. “It’s not enough that we feel ready to have a child, but we need to know what bringing a child into the world means, the responsibility.” And make sure everyone in town or living in the countryside, regardless of their condition, understands the obligations of their choice.
Míriam Císcar, Head of AECID’s Sectoral Cooperation Unit, stresses that 70% of women with disabilities live in rural areas. “This exposes them to higher illiteracy rates, lower chances of attending school and finding work. We are talking about people with a high degree of vulnerability. But they may want to be in control of their sexuality: not having children or having children. Not being raped or terminating their pregnancy if they are. They have to be able to decide all of this for themselves.”
there are solutions
Kartik Sawhney, co-founder of the Global Network of Youth with Disabilities, works to improve the accessibility of UNFPA sexual health education materials and resources for people with disabilities. With the support of We Decide, his organization is developing a platform with information on rights, sexuality and services available to the collective should they need help. It’s not easy, he admits, because the framework conditions are very heterogeneous and one wants to ensure fair usability.
“We try to use technology to connect people with disabilities and make them aware of the resources that are available to them. In audio, video, simplified text. Which they prefer,” he elaborates. They are still refining the pilot project. One of the challenges is making sure it’s not just available on the internet. “If we do that, we exclude a large part of society. In our network there are organizations from countries like Pakistan and Bangladesh, where about 60-70% of people with disabilities don’t have a smartphone or internet access.” That’s why they think of applications based on SMS, calls or radio. “So that everyone can participate in the community and learn from UNFPA documents and in turn their perspective can reach higher levels than the UN.”
Follow PLANETA FUTURO on TwitterFacebook and Instagram and subscribe to our “Newsletter” here.