Collective care is at the heart of global intersex movements built around solidarity and community

We caught up with Astraea Intersex Human Rights Fund (IHRF) Senior Program Officer, Ruth Baldacchino, and Program Associate, Loé Petit, to find out more about how intersex communities have been impacted by the pandemic, how they’re adapting their work to best serve their communities in this changing world, and what they need to see them through.

Astraea’s blog, Collective Care Blog: Building the Power & Resilience of LBTQI Movements Now & for the Long Haulis Astraea’s response to the global COVID-19 pandemic. As a feminist LBTQI funder, we believe it is our responsibility to shed light on the ways our communities are particularly impacted by the crisis, share insights around the criticality of healing justice and collective care, as well as the ways in which we’re digging deep to keep shifting power to the grassroots in meaningful and sustainable ways.

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Everything people are doing to take care of the community can be seen as healing justice or collective care and this work has been part of the practices of the intersex movement since its very beginning. It is the very reason the intersex movement was born in the first place.

– Loé Petit, Intersex Human Rights Fund Program Associate

On November 8, we commemorated Intersex Day of Solidarity, an annual day of remembrance during which we reflect on the ongoing struggles of the global intersex community. This year in particular, the global intersex communitylike so many other marginalized communities around the worldhas been deeply impacted by the COVID-19 pandemic and its ongoing knock-on effects. From financial hardships to isolation from their chosen communities, intersex people and the growing global intersex movement are experiencing numerous challenges to their ability to survive, organize, and thrive. Yet simultaneously, intersex organizations have continued tirelessly to look out and provide for each other, from building critical online community spaces to setting up mutual aid networks.

As the pandemic continues to rage across the globe, intersex organizationswhich are already amongst the most vulnerable in terms of their access to resources and supportneed sustained, flexible funding to be able to grow and build power for their movements and themselves. We caught up with Astraea Intersex Human Rights Fund (IHRF) Senior Program Officer, Ruth Baldacchino, and Program Associate, Loé Petit, to find out more about how intersex communities have been impacted by the pandemic, how they’re adapting their work to best serve their communities in this changing world, and what they need to see them through.

[This interview has been edited for clarity and length.]

How have intersex organizations and movements had to adapt their strategies to meet the COVID-19 moment?

Loé Petit: All our grantee partners have had to adjust their strategies and activities. A lot of groups have shifted a lot of their work online to try and create a sense of community in the face of restrictions on movement. OII Europe for example started a series they are calling “Camp Fires” where intersex community members and activists come together to watch movies together and then discuss them. Other grantee partners who regularly provide peer support or family support have moved those activities online. Additionally, while many groups have moved online, groups like the Intersex Community of Zimbabwe have been physically going to rural areas to do trainings around making hand soap and hand sanitizer. In Asia, many of our grantee partners have been providing mutual aid support through either direct donations to those in need and/or supplying food.

Ruth Baldacchino: The main takeaway of all this is that everyone has been impacted and people are not only having to change their strategies but alsolike usshifting the way they work, where they work, how to engage with their members or with other community members. Many have also repurposed their grants, shifting that money from support to the organization to buying, as Loé said, food packages and supporting community members even with temporary accommodations, and medical and other basic supplies. 

Can you tell us a little bit more about how the pivot to primarily online work has been for intersex groups?

RB: Yeah, so even pre-COVID different groups engaged with their members differently; they had different strategies. Some were already doing a lot of online work and they were connecting with other members or other intersex organizations via social media and online, others were doing more community work, going into towns and villages to reach out and support families.

Existing infrastructure challenges play a critical role in this: those who did not have the best access to the internet are still facing those challenges, and in some cases they’ve worsened. It’s also a bit early to determine the long-term impact and shifts. In the first few months, people were really addressing the emerging and very urgent needs like access to food and other supplies, and if this goes on longer I think groups will be continuing to rethink and rework their campaigns and their strategies.

LP: Yeah, I agree. When we talk about shifting to online campaigns, it really depends on the capacity and local infrastructure that is available. In some regions, like parts of Africa and Latin America, it makes things much harder, while in other regionsespecially for those not living in big citiesshifting online has in some cases allowed people to gather more easily because more people can join from their homes.

How have intersex activists and organizers been specifically impacted by the restrictions on movement as a result of the pandemic?

LP: One of the first things that comes to mind is the postponement of the 5th International Intersex Forum which was originally scheduled to take place in March of 2020. This year would have been the first international forum since 2017and the movement has grown and changed a lot since thenand its postponement has had a real impact on intersex movements’ morale as well of course as their capacity building. The forum eventually took place as an online conference from September 30 – October 26, 2020, which was obviously very different than having it in person because while the conference part of the forum is important, it is usually in those other moments, when organizers get together socially and more informally and meet as human beings that connections are really formed. And I would say this is especially important in the intersex community because there are still such few spaces where intersex people can gather and meet.

As I’ve said previously, shifting to online meetings is sometimes more inclusive because it allows those who have less mobility to take part as well. But moving online shifts the focus of these meetings to be centered around political activism work, and doesn’t allow for as much trust building between humans. So I think that could have an impact on the capacity of the grantees to build stronger regional networks, and especially with new people. It becomes especially difficult for a newer generation of activists to get involved, because the regional in-person meetings are also a way to learn from and meet more experienced activists.

RB: I agree, and one of the things that we’ve always argued as a fund and as Astraea, is the need to support the creation of spaces, physical spaces. We’ve built a lot of our work around supporting those spaces, whether it’s the regional meetings, other capacity building work, or the forum. As someone who’s been in those spaces for many years, I could see the huge impact they have had on the movement. We’ve seen declarations, consensus statements coming out from the movement. We’ve seen organizations being formed. We’ve seen agreements and disagreements as well, but that’s how movements emerge. This restriction of movement is significant.

Additionally, these spaces have also become incredibly important for donors. Donors wait to see the outcomes and the key decisions that are made in these meetings. So this also impacts our work as a fund, as a donor. We’ve all built our work around movement, literally moving. For me as a program officer, the conferences and those spaces were always an opportunity to connect, form friendships, and get to understand the intersex activist landscape better.

What has the impact of all this meant for intersex organizations’ ability to do advocacy work?

RB: A lot of the advocacy has stopped or slowed down because people aren’t able to be at the institutions where that work is usually carried out, whether those are regional human rights institutions, or international ones, like the UN. This is of course not just an intersex movement issue. This is a big concern because advocacy strategies are important, they build on past work, they build on connections, on networks, on being in the same physical space as the policymakers and the governments. So it’s difficult to imagine what this means, for activists to not be able to be in New York or in Geneva and keep that momentum, to have human rights mechanisms and treaty bodies really listen to intersex people directly when they’re reviewing countries, when they’re making recommendations. 

Shifting gears a little bit, can you speak about the economic impacts of the pandemic for intersex people and movements?

LP: So at the moment of course we don’t have enough quantitative data, but what we do know as I’ve mentioned is that in general people in more informal sectors and non-traditional sectorswhich many intersex people are a part ofhave been badly affected. Beyond this, I think it’s important to name the ways in which some funders have shifted their priorities and the impact that is having on intersex organizations.

RB: Yeah, what we saw as well as what grantees have reported, was some donors shifting priorities and sometimes also reducing funding for LGBTQI programing and shifting it to development or humanitarian aid as the pandemic hit. That was very worrying because that happened instantly with some funders. It didn’t allow groups to plan or to find other sources of funding to mitigate the effects, and that is still a concern. As donors that’s definitely on our mind.

Following up on that, what do you believe Astraea and the IHRF’s specific role is through this pandemic, both from the perspective of supporting intersex grantees, but also in terms of advocating for more intersex funding with other donors?

RB: Primarily what we started noticing earlier this year when the pandemic began spreading throughout the world and we started learning more about its impacts, was that intersex people were not being mentioned anywhere. They were absolutely missing from all the conversations that donors were having around the impacts of COVID-19. Even within LGBTQI donor spaces, as we were shifting our work to online meetings, trying to understand how to react and support our grantees in this pandemic, intersex people were missing from the conversation. So that has definitely been a big part of our role, to create donor spaces to specifically discuss intersex issues and to share with other donors what we’re hearing and learning from our grantees. That’s always been our role as a fund, but this year it’s particularly important.

In these spaces, we share a lot of what we’ve just discussed and we highlightas we always havethe need for flexible funding. I think the pandemic really reinforces that need. Because of the flexible funding we provided, grantees were in a position to shift their programming, to shift their grants to buy food, provide shelter and accommodation. If that funding was restricted funding, they wouldn’t have been able to do that. And I think hopefully this year should have been a clear reminder to funders that flexible funding is the only way to support movements and intersex organizations. That remains our key message because of all these emerging issues and challenges, flexible funding is the only way to support a movement sustainably and on a longer term.

Finally, how do and how have intersex organizations incorporated healing justice and collective care strategies into their work and activism?

RB: In some ways, this is a question of how we frame healing justice and collective care strategies in relation to intersex movements. For intersex communities and movements, addressing trauma through different strategies and approaches has always been one of the ways that intersex organizations have practiced collective care and healing justice.

LP: I think the work of intersex organizations has really always been about centering community. So when I spoke about OII Europe organizing ‘Camp Fires’ to keep up the morale, that’s community care. And when I spoke about Intersex Community of Zimbabwe delivering trainings on how to make soap and sanitizer, that’s community care. Everything people are doing to take care of the community can be seen as healing justice or collective care and this work has been part of the practices of the intersex movement since its very beginning. It is the very reason the intersex movement was born in the first place.

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DeGenderation Confederation

DeGenderation Confederation (DGC) is a non-profit organization working with the goal of abolishing the gender norm system towards sustainable and inclusive equality in society.

DeGenderation Confederation (DGC) is a non-profit organization working with the goal of abolishing the gender norm system towards sustainable and inclusive equality in society. In order to achieve the ideal society, DGC mobilizes empowerment activities, enhances the capacity of community organizations for organizations to develop and eliminate the social construction of gender. At the same time, DGC establishes a network for joint advocacy to promote social change. In the next 5 years (2019 -2024), DGC willfocus on advocating for the rights of intersex people, and then non-binary minority groups and queers with awareness-raising activities for both community-based organizations and civil society organizations at local on the knowledge of sexual diversity and methodology of the social construction of gender. At the same time, DGC builds a space for sharing knowledge, tools and experiences to not only work together for social mobilization but also be a strong support platform for voicing inequalities and discrimination.

The Intersex and Family Support Network

The Intersex and Family Support Network serves the families of intersex people, parents and babies, children, teenagers, and particularly intersex adults.

The Intersex and Family Support Network – Jacob(y) – Rede de Apoio à Pessoa Intersexo e Família – Jacob(y) – was created after Thais Emilia; mother of an intersex baby named Jacob, who needed to be brought to São Paulo to address a congenital heart problem, however, the child ended up dying. With the network, Thais sought out core teams of caregivers (doctors and psychologists) who had in common the defense and promotion of the physical and psychological integrity of intersex babies. From this network, it was possible to accept the demands of intersex people who were unaware of their access rights to health. Some request assistance because they had sequelae from non-consensual genital surgeries they suffered in the past, or even because they lived with rare diseases that had to come to centers with more health equipment. Most of them are sent to São Paulo (Brazil) to continue treatments with specialists. The visits were made in person or remotely, especially in the last seven months due to the pandemic. This network has a partnership with ABRAI and UNIFESP, especially psychologist Dr. Mariana Telles Silveira, endocrinologist Dr. Magnus R. Dias da Silva and pediatric surgeon Dr. Mila Torii.

Potencia Intersex

Potencia intersex wants to build an organization that is able to educate society with the goal of raising awareness about the lived experience of our community, to do consciousness-raising work about the violation of human rights of intersex people, and mobilize society so that they may actively participate in the topic of bodily autonomy, physical and mental integrity, and the right for intersex people to their truth.

The group was formed within the framework of the 34th Multinational Gathering of Women and Dissidences (34° Encuentro Plurinacional de Mujeres y Disidencias) which took place in La Plata in 2019, during the “Intersexuality Workshop.” The development of this space was the result of a process that organizers began remotely through social media, and it was developed as a way to respond to certain needs that emerged in informal chats between members. All the organizers expressed the desire to work as a team, linking our individual efforts through shared projects, so that they could push and have more impact with their work, each of them from their own place of residency. During the Second Intersex Conference of Latin America and the Caribbean they consolidated their team and gave their activist group a name. They want to build an organization that is able to educate society with the goal of raising awareness about the lived experience of our community, to do consciousness-raising work about the violation of human rights of intersex people, and mobilize society so that they may actively participate in the topic of bodily autonomy, physical and mental integrity, and the right for intersex people to their truth.

Intersexesiste

Intersexesiste was formed in 2016 as a collaboration between intersex organizer Claudia Balsamo (AISIA; Agedo; IntersexEsiste) and academic allies (Daniela Crocetti and later Marta Prandelli) with the primary goals of addressing the significant lack of non-medically driven information on intersex in Italian and creating bridges between different intersex realities (including patient associations).

Intersexesiste was formed in 2016 as a collaboration between intersex organizer Claudia Balsamo (AISIA; Agedo; IntersexEsiste) and academic allies (Daniela Crocetti and later Marta Prandelli) with the primary goals of addressing the significant lack of non-medically driven information on intersex in Italian and creating bridges between different intersex realities (including patient associations).

They developed two strategies: an online platform that would provide easily understandable non-stigmatizing information on intersex experience and rights issues; and a series of interactive workshops oriented at a mix of educator and medical students and professionals (other intersex organizers participated in giving these workshops, even if not formally part of the group). The online platform included links to all Italian intersex activist groups and variation specific associations that gave us their permission to list them. In the course of 2019 and 2020, their mission has expanded in the arena of creating bridges between intersex realities, and fostering dialogue in intersex only spaces. This activity was spearheaded by the entrance of a new lead intersex member, Manuela Falzone (AISIA; IntersexEsiste; Intersex Italia FB; Intersex/dsd Italia FB) who also had experience with the patient association AISIA but wanted to expand her political reach. Manuela helped moderate two intersex only closed FB groups “intersex italia’ and ‘intersex/dsd italia’, and is interested in creating productive collaboration between different intersex realities and voices. The overall mission is to promote accurate non-stigmatizing information about intersex in Italian, in this manner also promoting bodily integrity and autonomous decision-making for intersex people in medical settings and institutions. This has taken many forms in order to reach both the general public and specialist professionals such as teachers and health care professions that have significant impacts on intersex lives. With the name ‘IntersexEsiste’ they hope to affirm the idea that if more people learn what intersex is, is a bodily variation that shouldn’t imply shame or modification, the social pressure on medics and families to modify children’s bodies will decrease. They formed the group with the intent to combine the experience of the intersex people with the knowledge of academic allies who have conducted respectful and agency-based work in the intersex field.

Intersex People’s Human Rights – ISIO Finland

The overall mission of ISIO Finland is to end stigma and discrimination and ensure intersex people’s access to their fundamental and human rights.

Intersex People’s Human Rights – ISIO Finland was founded in January 2020. Awareness-raising, education and information-sharing on intersex people’s human rights is very topical in Finland. ISIO Finland was founded to ensure that intersex people’s voice is being heard and the human rights of intersex people are being ensured at this critical moment.  

The overall mission of ISIO Finland is to end stigma and discrimination and ensure intersex people’s access to their fundamental and human rights. To achieve this goal the organisation raises awareness, networks and co-operates with relevant stakeholders and shares information and provides expertise to law and policy drafting on the human rights situation of intersex people in Finland. 

Intersex-Nigeria

The mission of Intersex-Nigeria is to create awareness about intersex through public education and social engagements, build a community space for intersex persons to co-habit, provide psychological and well-being support for intersex persons in Nigeria, and advocate for intersex rights in Nigeria.

Intersex-Nigeria was founded on 25th November, 2019. The intersex-led organization was founded by Obioma Chukwuike, an  intersex person from Nigeria who lived the pain and stigmatization meted on them for being intersex. The ugly situations of intersex population in Nigeria includes intersex genital mutation on intersex babies, violent abuse and killings of intersex persons, misogyny against intersex women, discrimination and lack of understanding of what intersex means.

Organizers decided to form the first intersex-led organization in Nigeria to create public awareness of intersex understanding, create visibility and community building for intersex persons and advocate for the rights of intersex persons which includes; rights to bodily integrity, ending stigma and discrimination, creating visibility, ending the killing of intersex babies due to cultural beliefs and ending medical intervention surgeries on intersex babies. 

The mission of the group is to create awareness about intersex through public education and social engagements, build a community space for intersex persons to co-habit, provide psychological and well-being support for intersex persons in Nigeria, and advocate for intersex rights in Nigeria.

Intersex Greece

Intersex Greece wants to spread the word widely, create visibility and protect intersex people’s rights at any age and field of life in Greece.

At 2009 Rinio Simeonidou gave birth to her intersex child, after she was intensively asked/been forced (by two ignorant, homophobic doctors) to terminate in the 5th month and refused. While realizing “intersex” was totally unheard/invisible/unknown in Greece and full pathologized to the extend to press parents to terminate, she started searching in the internet and eventually found and connected with few other parents of intersex kids and a few intersex adults too (first with Lakis Kandylis), with whom she formed the first Greek intersex facebook group. Today, via this group, they are in contact with about 60 families/persons, from all over Greece and support them by peer-to-peer info sharing. They want to spread the word widely, create visibility and protect intersex people’s rights at any age and field of life in Greece. To achieve this, they want/need to create an inclusive, national NGO for intersex people that live in Greece, no matter of nationality, economical status or any other diversity (sex, gender, sexual orientation, colour, religion, economical status, etc).

Overall, they want to create awareness and inclusion for intersex people, so to be legally recognized by the greek laws as a natural state of human beings, having equal rights with men/women. They also want to legally ban cosmetic (non-medical necessary) genital surgeries to intersex babies and children, until they reach an age capable of informed consent.  They want to be able to provide support to new parents-to-be, or to parents of intersex children and peer-to-peer support to intersex individuals. They want their voices to be as formal as possible, so to be heard by the state and its formal entities (education leaders, health leaders, policy makers, religion leaders and anyone in civil/policy command in Greece). Article 7 of the Draft Law on gender reassignment surgeries of the Legislative Committee of the Ministry of Justice prohibited explicitly non-therapeutic surgeries on intersex infants but it was disappeared before reaching the Parliament. Currently, Law 4491/2017 on gender reassignment surgeries includes only the definition of “sex characteristics” in its preamble leaving intersex people legally unrecognised.

 

Intersex Anatolia/ Intersex Turkey/ Intersex Shalala

Intersex Turkey voluntarily works for advocacy among LGBTI+ related events.

The intersex rights started to be discussed in Turkey among transgender movement around 2010-2011. A transgender organizer Ali Gül, lost to cancer since then, was one of the initiators. Due to the lack of human resources, the intersex movement cannot be strengthen itself and it is still supported by LGBTI+ organizations. The three organizers voluntarily work for advocacy among LGBTI+ related events. Although there are more intersex people that they know, those people are working as civil servant or they are not ready to come out to public; therefore, they are not that active in the field. The overall mission of the group is to raise awareness on intersex rights.

Intersex Advocate Trust Zimbabwe

Intersex Advocate Trust Zimbabwe was formed in 2016 to respond to the psycho social needs of all intersex persons (including intersex children and their parents, and gender non-conforming adults).

The organisation was formed in 2016 to respond to the psycho social needs of all intersex persons (including intersex children and their parents, and gender non-conforming adults). Intersex children face abandonment at birth, corrective sex assignment at birth, backlash against gender non-conformity including in gender expression. Biological essentialism has led to mutilation of some intersex children’s genitalia to fall into an assigned sex either male or female in an absolute binary. Mysticism around intersex births is still a culture barrier to visibility of intersex persons. As time goes on, the children grow entering in adolescence and the nature of their psycho social needs also evolves. Sexual Reproductive Health issues start coming up and the parents and caregivers struggle with responding to the questions posed to them. The service center is inundated with the cries for help from desperate parents as the genitalia of the child becomes an issue. Intersex Advocate Trust Zimbabwe intends to rollout a vertical and horizontal scale up of it’s current activities in order to increase the courage and impact of Sexual Reproductive Health and Rights. The mission of Intersex Advocate Trust Zimbabwe IAZ is to create a society that is non-discriminating to sexuality and human rights and needs. It serves as an advocate of sexual inequalities.