Recently, the UN released a statement by the UN Special Rappoteur on Torture (SRT) for Human Rights calling for a STOP to “normalizing surgeries” in intersex people as a gross violation of their human rights. As a spouse caregiver of intersex , this is a demand we have made on deaf ears for several years including the UN, WHO, American Medical Association (AMA), Texas Medical Board (TMB) among others including Heads of Gender Medicine Teams at various reputed hospitals and bioethics teams at various reputed hospitals. While they may NOT listen to us maybe because as a spouse caregiver we have NO medical basis to challenge a decades old concealment based treatment approach. As spouse caregivers of intersex, we are simply working on first-hand experience and instinct as a human rights crusader that what is happening is WRONG. The decisions of the medical community is having a perilious effect on intersex families. Have they considered ALL involved and deliberated on ALL the implications of the surgery and the hormonal treatment and its effects? Or are they playing russian roulette harming patient and caregiver safety including innocent children? In a first-of-its-kind case, a law suit was filed recently where a sex assignment surgery was performed on an intersex infant child without their consent. The hearts and minds of these very reputable medical professionals and institutions is in the RIGHT place but the surgery is NOT. It is interesting that a group on TORTURE released this statement for intersex people, what about TORTURE against the unsuspecting, innocent victims of spouse caregivers of intersex? If a conversion therapy from gay-to-straight is wrong and is being called for a ban, what about forced normalization surgery in intersex?
As a spouse caregiver of intersex, we feel vindicated by the statement made by the UN Human Rights Organization.
Caregiver Rights
By denying “normalization surgery”, the medical community claimed it NEVER happened. Thus as a caregiver we are shunned and forced into silence much like the caregivers of Alzheimers in the 1970s and early 1980s until education and spreading awareness began. Because of our forced silence, the issues that affect caregivers of intersex are not even surfaced let alone provide treatment or alternates because you see, the “normalization surgery” NEVER happened. So how can there be an existence of a caregiver for a surgery that NEVER occurred? How can there be effects of the hormonal treatment since the surgery NEVER occurred? We hope this is a new DAWN of TRUTH and moving forward. Secrecy and lies are a FAILED approach and let us hope the worthy and intelligent medical professionals see it that way too. Just because we have been doing something WRONG for decades does not justify our behavior to continue to do so. TRUTH, education and spreading awareness is the right answer. Secrecy and stigma are worse than the medical condition itself. Just like water, TRUTH always finds a way to get out.
TRUTH – The Right Way Forward
We can understand the dilemma that medical professionals can be placed in when diagnosing someone with intersex. It further can complicate matters if the person is married. What are the privacy rights of the intersex person Vs the rights of a spouse caregiver? Should the TRUTH be shared with the spouse who is also a caregiver? What if the TRUTH is not shared and the health deteriorates? Has REAL, ethical medical treatment been provided by suppressing critical medical information? Is the secrecy and lies forcing the caregiver to turn into a patient themselves? The intersex person is also grappling with all the information as it is presented as a “medical emergency” and “risk of cancer”. For someone in their 20s to find out being at risk of cancer is very traumatic. Should the spouse caregiver stay in the marriage or leave like 83% of male spouses (as per report) who leave a marriage when the spouse is diagnosed with a major illness? If the spouse caregiver stays, should he be rewarded with TRUTH or with secrecy, lies and denial of the surgery and its effects?
Evidence-Based Medicine
Where is the scientific basis for having a “normalization surgery” in an adult during a marriage? I know of intersex people in their 60s and 70s who NEVER had the surgery but are living a healthy life with no major medical issues or cancer. Is the “medical emergency” created to justify the false behavior of decades or should scientific data and evidence-based medicine be the standard? It is better to have an inclusive approach with the spouse caregiver and use a more palliative based treatment like other traumatic conditions.
It IS a long road ahead. And when it comes to human rights, intersex rights, caregiver rights, they all have one thing in COMMON – TRUTH. Let us start with the TRUTH aided with honest education and see where it leads…it cannot be a distance FAR AWAY from the “right answer” as we all struggle to find the “right approach”.
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