As I reflect on my transformative journey to the Philippines, I am overwhelmed with a wide manifestation of emotions ranging from deep gratitude, and appreciation for life, to a robust manifestation of Pinoy love, filled with hope for the future for our communities in Asia. I had the profound honor of participating in a series of consultative meetings with parents of intersex children with Congenital Adrenal Hyperplasia (CAH) in Manila, healthcare professionals, and advocates from various organizations. This experience has deeply moved me, enlightened me, and strengthened my fire and resolve to fight for the rights and wellbeing of intersex individuals in this country.
During our time together, I heard the heart-wrenching stories of parents who face unimaginable challenges every day. They share with tears their fears, their breath and struggles, and the rough paths they have to walk every day with their kids to ensure their fire remains alive it is incredible to appreciate so much resilience and how much they love their kids despite every imaginable adversity. From the initial shock of their child’s diagnosis to the ongoing battle for life-saving medications which are unavailable in most of the Philippines with just one Pharmacy distributing these life-saving, essential medicines, their journey every single day is one of courage and unyielding love that inspires me to devote my love for justice towards these kids and families..
Alain, who is also the President of the Congenital Adrenal Hyperplasia Society of the Philippines, spoke of the intensity of life, stress during the first weeks of his child’s life, and the constant trips to the emergency room, including all the resourceful and creative solutions he needed to come to just to prevent his child developing a life-threatening adrenal crisis. His story and many other is a testament to the relentless dedication these parents do to ensure their children have a fighting chance. Many mothers account of supporting several kids with intersex conditions, other mothers had to look after other children while living in very poor conditions, the economic impact that a child with CAH is in several cases extreme and takes up to 30% of the monthly income of a parent, together with the emotional strain faced by these families. Nelson’s poignant heartbreaking recollection of losing his child in 2008 and the ongoing battle he keeps fighting until today to ensure several other families don’t face what he faced, underscore the very urgent need for systemic change to address this issue which remains ignored by health authorities across the Philippines despite the legacy and work of these parents, Intersex Philippines and CAHSAPI.
These stories are not isolated incidents but are echoed by many families across the Philippines and the world, it is disheartening to see that medical institutions consider it more relevant to discuss these children’s genital morphology while ignoring the severe limitations children with CAH face in the world.
According to CLAN (Caring and Living as Nature Philippines), in several countries in the South East Asia up to 10% of these children don’t make it to adulthood. The barriers to accessing essential healthcare, the lack of specialized medical care, and the social and psychological support deficiencies are challenges that we must address collectively in collaboration with every stakeholder that believes in intersex justice, it is our moral obligation to stand with these children and their families in their fight life. We need to let these children dream. We all did, they do deserve it too.
To the global community, allies in the LGBTQ community, medical authorities, international and governmental agencies and stakeholders, I invite you with our hearts to join us in this love revolution. Together, we can bridge the many gaps and ensure that intersex children with CAH have the opportunity to dream and live fulfilling lives. Your support in every dimension and capacity can make a world of difference. We are a small community, we need humanity in our side. By advocating for comprehensive healthcare for ALL, we leave no child behind, by talking about us you are increasing awareness, and by providing financial aid to these families and organizations working with intersex kids we can create not just a future where no child is left behind, but where empathy can be great again. Intersex children are among the most marginalized children in the world, if we want a revolution of love and appreciation of life, we need to start addressing this issue with our hearts.
In the Philippines, we have started connecting the dots and bringing these issues to light, but there is still so much work to be done!. We demand a letter we have crafted, in collaboration with parents and health professionals including Dr Jeadeane Aragon president of the Philippine Endocrinology Diabetes Society and Metabolism Society, outlines and guides the urgency and the critical steps needed to address these challenges. We need your voice, your expertise, your empathy, and your compassion to turn these demands into a reality, a reality that allows these children to be children and dream in a better future where they can just be.
As someone who has walked a similar path, we know the pain of feeling different, alone, unheard, invisible and the fear of the unknown. But we also know the power of community, love, and resilience. Together, ALL we can transform lives and build a world where intersex individuals are celebrated, loved, respected, and supported.
Let us stand together in solidarity, as allies and advocates, and make this world a better place for every intersex child, ALL Children, Let us give them the possibility to dream and be.
“Meet our Hero, a source of endless inspiration for our work and radical love”
With deep hope and the deepest gratitude to all families of intersex Pinoys, thank you for your hospitality, kindness, patience and love.
Mabuhay!
In solidarity.
Eli
Cross-Movement Building Officer, Intersex Asia
