Vindication As A Caregiver

March 6, 2013 by survivor

Dual MinoritiesRecently, 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

Intersex Gay Lesbian 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

Intersex diagnosis truthWe 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”.

No Comments / Tags: AIS, caregiver, human rights, intersex, lies, secrecy, torture, truth / Posted in Change

Lessons of Being a Spouse Caregiver of Intersex

December 31, 2012 by survivor

There are several positives to be learnt in being a spouse caregiver of an intersex.Equal Human Rights

1) Your innocent children suffer because you did not report the crimes and speak the truth out of threats and compassion. That does not mean the crimes did not occur. The perpetrators are free while the innocent children are getting the punishment. All the “do good one liners” come to a standstill because no one cares about the TRUTH or the gruesome plight of the innocent children. Instead of dying from this trauma, one lives to fight for justice and EQUAL RIGHTS.

2) As a spouse caregiver of an intersex, one learns that intersex have  unequal rights starting with marriage rights and are infertile but yet do not have rights to have children. Until then, the life of a intersex was a “black box” to you.

3) As a spouse caregiver of an intersex, one “inherits” the “unequal rights” by staying in a fraud marriage but the inequality is understood gradually as life progresses. One experiences FIRST HAND the life of secrecy, lies and fraud a intersex family has to live with just to get “equal”. Living a life of lies does no good and it is better to live with the truth and live freely.

4) As a spouse caregiver of an intersex, one understands that it is very lonely. One cannot talk about the issues openly and freely and is forced to live in secrecy and with lies. This can CONSUME you and restrict one’s overall growth and well-being.

5) As a spouse caregiver of an intersex, one experiences FIRST HAND the level of fraud, lies, and secrecy people in authority are willing to go through “out of compassion” for a intersex family but NOT for innocent IVF children. It is better to CHANGE the laws than to BREAK the laws. It is slower but does the society as a whole more good. And it is a better message for the children.

6) As a spouse caregiver of an intersex, one realizes that the loneliness is for lifetime simply because there are not too many spouses of intersex (because marriage is illegal?) or they are living in secrecy like I was. Unlike a spouse caregiver of breast cancer patient or Alzheimer patient where there are people to share with in common, no such outlet exists for spouse caregivers of intersex. There are physical wounds including a numb hand to carry for a lifetime which constantly remind you of the pain and suffering.

7) As a spouse caregiver of intersex, one experiences FIRST HAND that scientific facts and TRUTH have NO BASIS in MEDICAL SCIENCE. Instead, the humans who practice MEDICAL SCIENCE work on emotions and any CHALLENGE to their decisions is like Galileo challenging the earth as the center of the universe concept. Little do they realize that TRUTH always prevails if not in our lifetime then later, it may take time but it will prevail.

8) As a spouse caregiver of intersex, one becomes a “FIRST-TIMER” for everything. First to have Sex Reassignment Surgery (SRS) during marriage. First to have an IVF child in India with “no legal mother” while living in the US with no proper laws for IVF/surrogacy and having to deal with different laws of two countries. First to be a PRIMARY CARE PROVIDER for both the intersex spouse and the IVF child but in SECRECY. First to have SPLIT innocent IVF siblings across two continents. First to have an abandoned IVF girl child in India who cannot go to the US to be united with her IVF brother because “no legal mother” available. First to…it gets overwhelming to be pioneering new ground everyday. One realizes that be THANKFUL you are not dead from all the trauma and your parents raised you right.

9) As a spouse caregiver of intersex, one experiences being intersex like no one else. Even parents of an intersex do not have to deal with infertility, a spouse does. UNEQUAL RIGHTS and UNEQUAL LAWS. I suppose I could have left the FRAUD marriage and the laws would have supported me. I suppose I could have reported the crimes and abuse. I suppose I could have left and not shared my child with an intersex person who is infertile and given the current laws, there is no other way a intersex person could have a child. It is BETTER to speak the TRUTH and get the LAWS changed rather than BREAK the laws. It is BETTER to speak the TRUTH and unite the innocent IVF siblings who have done no wrong yet are being given the punishment. As an IVF father, I deeply care about IVF children and IVF families concerns and issues and it is BETTER to advocate, educate and spread awareness.

10) Being an intersex is not the issue, it is a naturally occurring condition. But choosing to lie about it and committing crimes and forcing others to lie about it  is a HUMAN RIGHTS VIOLATION. I take great inspiration from other intersex people who are honest and living their life with great joy and passion. Truth and Honesty – what a LIBERATING feeling. I join other honest intersex people advocating and fighting to get equal intersex rights.

11) I could have been dead not once but several times because of the severe trauma, betrayal and suffering. Thanks to a great woman, my mother and my sister and my family who have saved me. But above all, my lovely daughter, who was just a few days old who saved me because if I died then who would raise her? All these women in my life have showed me the love, compassion and strength that only a woman knows how. Teaching me that the only way out is to speak the truth and silence only begets abuse, I suppose they would know a little about that being a woman.

I fight for the TRUTH and FACTS. If justice is based on TRUTH then the innocent children deserve justice. I fight to unite my IVF children but also raise the awareness in the process and get equal rights for IVF children and families. There are donors and surrogates in an IVF industry who need protection too. The IVF industry needs to delicately balance the equal rights of all – the infertile person, the biological parent, the donors, the surrogates and ABOVE ALL, the IVF CHILD.

I have learnt a lot more about life than I ever imagined. I have learnt that justice is NOT based on TRUTH and prevailing laws. That is NOT a message I want to teach my children because if that remains true when they are adults, they may opt NOT to have children through IVF – a technology that gave me TWO WONDERFUL AND BEAUTIFUL children.

1 Comment / Tags: caregiver, equal intersex rights, equal IVF child rights, eunuch, hijra, infertility, intersex, secrecy, spouse caregiver, truth / Posted in Change

Caregiver Coming Out Day

November 6, 2012 by survivor

caregiver survivorThere are so many “coming out days” nowadays that it is easy to lose track of them but each one is special and important in its own way. November is caregiver month and suppose a “Caregiver Coming Out Day” is in order.

Anyone who has been a caregiver can attest that the reason for becoming a family caregiver was purely coincidental and out of love. It is not for attention grabbing. So a “Coming Out Day” is not the same as trying to make a statement of who you are. If family caregivers started demanding pay for their services, it might just jump-start the economy with all the associated tax revenues or people may stop receiving care. No one knows because no one has a complete picture of what each family caregiver does. Most family caregivers do not publicize their personal issues, rather they voice concerns over “best place to get cheaper prescriptions” or “what does this symptom mean?” or some great doctors in the neighborhood and after forming a community, they may even trade food recipes or fantasy football games if they have the time. So why is a “coming out day needed?” Here are some reasons why coming out day for caregivers should be celebrated:

1) Sharing : Most family caregivers will agree that by sharing their caregiving role with someone, it makes their life much simpler. Having physical help and caregiver respite are good but lot of times just being able to share is a huge release. And it betters their overall health. Stress can cause health issues for caregivers.

2) Closet caregivers : By being a closet caregiver, no one is getting helped. The caregiver is shunning their own personal issues and health. And whatever knowledge they have gained about caregiving and the specific ailment of the patient is lost by NOT sharing with anyone. It does not help future patients of the same ailment nor the caregivers.

3) Fun : Most family caregivers are in the role because they love their family member, be it a parent or spouse or child or relative or sibling. It is important to remind both the patient and the caregiver the “fun” times they used to have together which made the love possible so that they can continue to enjoy a healthy patient-caregiver relationship.

4) Recognize : That caregiver also may have health issues. Instead of having a caregiver for a caregiver, it is better to recognize the caregiver as a patient too as appropriate. By allowing a platform/medium to share, hopefully the caregivers feel comfortable discussing the issue.

5) The Power of Many : By having a sharing and caring platform, more caregivers will benefit from the collective wisdom of each other. Which in turn also helps the patients about administering medications, effects of medications, doctor questions to organizing outings/events for them.

6) Encouragement and Inspiration : By family caregivers coming out, it will encourage others to do so as well and be an inspiration for all. It feels good to celebrate the love that human beings share be it as a patient-caregiver relationship. It makes life worth living.

As a fellow family caregiver, this is an open invitation to every other family caregiver to come out and join the conversation with us. This is an open forum. You will have lots of positive experiences. Whether you choose to go to local support groups, or online support groups, or social media, or so many other avenues, the important message is to interact with fellow family caregivers. We love our family caregivers and welcome you. You can view our mission statement and feel free to sign the petition supporting caregiver rights.

 

No Comments / Tags: AIS, caregiver, intersex, male caregiver, spouse caregiver, young caregiver / Posted in Education

Infertility And AIS During A Marriage

October 5, 2012 by survivor

https://www.facebook.com/wegohealth/posts/10151243610939254

Comments Off / Tags: infertility / Posted in Parenting

Gay (LGBT) Rights and Spouse of Intersex Rights

September 24, 2012 by survivor

Intersex Gay Lesbian RightsIs there a difference between gay rights or LGBT rights and spouse of intersex rights? One has to discuss the ground realities first. If you are not aware of intersex or what it is, intersex is a group of genetic conditions. One such intersex condition is Androgen Insensitivity Syndrome (AIS) that affects sexual development before birth and during puberty. People with this condition are genetically male. They may have female sex characteristics or signs of both male and female sexual development. The intent here is to get equal LGBT rights and equal intersex rights. The “equal rights” is inevitable but just like interracial marriage or civil rights or apartheid, one has to fight for their rights. Any similarities or dissimilarities are highlighted from an analysis perspective to bring change in the social fabric and community. The words intersex and AIS are used interchangeably.

Anti-homosexuality laws ‘will in the future be seen as wrong as apartheid laws are now’ - Bishop Desmond Tutu

We may add [anti-intersex couple] laws as well

1) In a gay relationship, both members are genetically male. In an AIS relationship, both members are genetically male. This creates some specific situations in getting equal rights for all. As a spouse of intersex, one should have a right to know the facts of the medical condition rather than being lied to under the pretense of “privacy”. Are the human rights of the non-intersex spouse being violated? There is no “I” in infertility when one is married like in an intersex marriage, then why is there an “I” in treatment of intersex during marriage?

2) In a gay relationship, if a partner is fertile, only one male can opt for having a biological child. In an AIS relationship, the AIS person is infertile. So if the other partner is fertile, only that male can opt for having a biological child. This creates some specific situations about marital rights and child rights. If the child is born outside the US and if immigration laws are involved, the prevailing US immigration laws require a biological link to the child of the parent. Then what are the rights of the intersex parent, a non-biological parent? Can they legally bring a child born outside the US? Or is the message that intersex people should not have children despite options like adoption and fertility treatments?

3) In most countries in 2012, the prevailing laws associate a child’s primary care provider as a “mother”. In a relationship between two males, who is the “mother”? This is different in a lesbian relationship, a child would have a biological “mother” which can be used to their advantage using prevailing laws. We need laws specifically for child born to male without a legal “mother”. A case in point is where a gay couple had a child born through in vitro fertilization (IVF) and are no locked in a custody battle of the IVF children. If gay marriage were legal and therefore the resulting surrogacy to have a child by gay parents, would there be a legal case now? This case highlights the traumatic and difficult situations created because of LACK OF LAWS.

4) When a child is born in a gay or intersex relationship between two genetic males, which parent’s rights does the child inherit? Are both considered “father” or one is assigned as the “mother” based on biological relationship to the child? While laws on adoption have been in existence longer and are more mature, laws on fertility treatments like in vitro fertilization (IVF) and/or surrogacy are still evolving without a standardized international equivalence. With the cost of IVF/surrogacy high in western countries, lot of people opt for fertility treatments in Asian countries like Israel or India where costs are more affordable. Can IVF children be legally brought back to the western countries specifically if the children are of a relationship between two genetic males?

5) People can love each other without being married. Marriage is an important social and legal institution because it confers a lot of rights to the spouses.   With changes in the air across the world with more equal rights for LGBT, there is a lack of awareness about intersex and their rights. Should there be laws to make intersex marriages legal?

6) In a gay or lesbian relationship, both adults are aware of each other’s relationship preferences and the inherent lack of rights in 2012 for gays and lesbians. In an intersex relationship, the non-intersex spouse may not be aware of the condition until after the marriage and the inherent lack of rights for both intersex spouse and the non-intersex spouse.

7) Being gay or lesbian has probably been around for ages as a natural human emotion, however, secrecy and stigma have been associated and unfortunately still are although its changing. Being intersex is a genetic condition and is natural, however secrecy and stigma are associated with it. Unfortunately, there is lesser awareness and knowledge about intersex than gays or lesbians and therefore there is a heightened secrecy and lying including at institutional levels. Unknowing non-intersex spouses are forced to lie in the interest of helping someone compassionately to deal with being intersex. Instead it is better to have equal rights for intersex couples so they can be honest.

8) There is a “critical mass” of LGBT rights movement. There has been lot of success and laws are changing. As per NIH, 1 in 20000 births are AIS which would make the total population of AIS in the world at 350,000. While 1 in 2000 births are intersex which would make the total population of intersex at 3.5 million. Considerably, intersex as a group is a much smaller minority than LGBT. The non-intersex spouses of AIS or intersex are probably a far smaller minority as most intersex people report difficulty in long-term relationships and intimacy.

Is it right to give the rights of a minority while ignoring a smaller minority? We all know the right answer in our hearts which is to have equal rights for all. But we take a pragmatic approach and after working in the inefficiencies of “law-making”, we take what we can get which is NOT the same as EQUAL RIGHTS FOR ALL. Unfortunately, it is akin to solving world hunger. Everyone wants to help but no one knows how to solve it even though millions of tons of food from restaurants, homes, etc. goes to waste everyday meaning as a human race we have resources to feed every human on this earth but we still cannot.

The intent here is to highlight the ground realities facing intersex couples and their children. After the secrecy and stigma of being in an intersex relationship, trauma of dealing with infertility and lack of laws for intersex couples to have children legally, there is no need to continue the trauma. It is better to educate, spread awareness and ask for equal rights.

No Comments / Tags: AIS, gay, gay rights, intersex, IVF, lesbian, LGBT, LGBTI, marriage, secrecy, spouse / Posted in Change

August Beginning As A Caregiver

August 1, 2012 by survivor

Caregiver BeginningIt’s a new month and it’s August. The sunshine feels just right. The wind feels just right. Why not have a august beginning as a caregiver? Regardless of where you are in your caregiver journey, whether you are currently caregiving, or cared for someone in the past, or you do not know it yet but you may become a caregiver soon. It is time to rejoice, let yourself go and feel good about yourself. Here are some great things I rediscovered recently with the help of my loved one.

1) Sunrise or Sunset – Whatever your calling, whatever you feel closer to, take your favorite person in the world along or go by yourself and enjoy a sunrise or your sunset depending on what your schedule permits.

2) Repeat – If you enjoyed your 2 minutes or 10 minutes or whatever time you could afford watching the sunrise or sunset, make it a habit to repeat.

3) Cold shower – Have a cold shower either before going for the sunrise or sunset or after. Apart from being very therapeutic, you will enjoy the rejuvenation. Depending on your schedule, take 2 minutes or 10 minutes of your time.

4) Breathe – Do a deep breathing exercise after the shower. Take your time and be patient. An average person cannot hold their breath more than 20-30 seconds. So if you take a few deep breaths, we are talking about 2-3 minutes at tops.

5) Walk – Take a walk inside the house or in the yard with bare feet while touching the ground. It is a very soothing feeling. If you are in Alaska or Antarctica or feel like you are, then walk indoors just for a bit.

6) Water – Have a BIG glass of water while feeling it go down your neck and till your stomach. Capture that moment as you feel all your senses at work.

Now you can get back to what you were doing. This is very doable. All these activities can take anywhere from 15 minutes to 30 minutes at most. That is time you deserve for yourself as a caregiver. Think about the patient. The better rejuvenated you are, the better care you can provide. Try to fit this into your schedule somehow. Maybe you have a friend who can watch the patient for 30 minutes or maybe if you have someone who comes over and gives the patient a bath or food. Try the routine and it will do wonders for you and the patient.

All the BEST and thanks for all you do as a caregiver.

1 Comment / Tags: caregiver, change, intersex, male caregiver, spouse caregiver, young caregiver / Posted in Change

Intersex Surgery During Marriage

July 9, 2012 by survivor

Marriage-truth-breakIf you are reading this, you should ask yourself what is marriage? The fundamental building block of any marriage is trust and love. Compassion, family, children, home, in-laws, BBQs, parties, socializing, vacations, etc. come later. The marriage vows that we all recite has sentences like “till death do us apart” or “in sickness and in health” all of which are great sounding. How many stick around to test these vows? Statistically, 50% of marriages end up in divorce for whatever reason. As per a recent study by Fred Hutchison Cancer Research Center, women are 6 times more likely to be divorced or separated when diagnosed with a major illness. This begs the question should intersex patients have sex reassignment surgery (SRS) and hormone replacement therapy (HRT) during a marriage? There are bioethics issues that need to be dealt with in an intersex marriage.

Intersex Marriage

Unfortunately, intersex has been dealt with lot of secrecy and stigma. As a result, an intersex person already finds it difficult to find a person who is compassionate and loving to marry with. Hopefully, the future will be different by raising awareness and education. The flip side is half-truths and to not disclose the intersex condition to the future spouse. This approach is a BIG no-no in any marriage because marriages are built on trust and love. As a married couple, they also want to have children. Adoption is the most common option but what if it is not possible. The next choice is to look into fertility options. As they begin their quest for fertility options, a doctor reveals the intersex condition and advises sex reassignment surgery followed by hormone replacement therapy. It is likely the couple is young in late 20s or 30s. Neither of them having much clue about effects of the treatment. Is there any medical data or scientific basis to have the sex reassignment surgery and therapy for an intersex patient while in your 20s or 30s? Do the benefits outweigh the risks during a marriage?

Spouse Caregiver of Intersex

An intersex marriage is fragile. Typically, parents are caregivers of intersex patients when they have sex reassignment surgery and go on hormone replacement therapy. Parents also have access to medical resources and information and support groups of their own to help and guide them through the process. Due to privacy laws, spousal caregivers of intersex patients do not have the same access. The spouses are left out. Worse, the spouse has no resources or information for their own support and help. The intersex condition is traumatic for the patient. What about the spousal caregiver who is left in the dark. Is there trauma? The spouse has to withstand all the issues that come along with the medical treatment but there is no feedback mechanism. Because of privacy, the spouse is not allowed to go to the doctor visits for the intersex patients. How does the doctor get a complete assessment of the therapeutic treatment? Hormone Replacement Therapy is NOT an exact science. Multiple factors are evaluated to arrive at the correct dosage for each individual. Without a 360 degree view of all the people involved in the patient care, how can one medically and scientifically arrive at the right therapeutic solution? Had there been parental caregivers of intersex patient, they would be allowed to participate in the feedback mechanism. So why is the spouse of an intersex patient being discriminated against? That is an oxymoronic statement, isn’t it? In a first-of-its-kind case, a law suit was filed by the parents of an intersex child where a sex assignment surgery was performed on an intersex infant child without their consent. Does the spouse of an intersex person who did the sex reassginment surgery (SRS) during a marriage have EQUAL rights?

Best Interest of Intersex Patient

Everyone deserves to be happy. The best interest of the intersex person is to be happy. If they have found a spouse who is happy with the intersex person, then why bother? The doctor’s best interest is the well-being of the patient. If the medical system chooses to do the sex reassignment surgery during a marriage then they should make it an inclusive approach for the spouse. The spouse also has some of the same symptoms including but not limited to trauma, infertility, secrecy, stigma and dealing with the sex reassignment surgery and hormone replacement therapy as a caregiver. It would be good to see medical data or a scientific basis to show benefits of doing sex reassignment surgery and hormone replacement therapy in 20s or 30s. There are several intersex patients who have lived well into 60s, 70s and died of natural deaths without having had sex reassignment surgery or hormone replacement therapy. If it aint broke, don’t fix it. By introducing new challenges of testing the marriage vows, the already frail marriage of an intersex couple is tested to no limits. Further, the doctor who reveals the intersex diagnosis to a couple has no idea whether it is information which has been shared with the non-intersex spouse? What if there was fraud in a marriage. Now the medical system is just compounding the marital issues and for their patient.

There are several first-hand accounts by intersex patients who have widely rejected the surgery. They either prefer to wait or never have it done. Regardless, they want it to be “their” decision and not the doctor. If a heart surgeon does triple by-pass surgery, they document it as such on medical record. If a neurosurgeon does traumatic brain injury surgery, they document it as such on medical record. Why is intersex surgery NOT documented similarly with facts? Apart from stigma, maybe there is something about the controversial treatment which is medically not acceptable? All we are asking for is the truth.

Even the most compassionate and loving spouse may finally end the marriage. Potentially dealing a devastating effect on the intersex patient. Do the benefits justify the risks of happiness? After all, isn’t the purpose of the medical treatment to give a healthier life for the intersex patient and ultimately happiness?

 

No Comments / Tags: AIS, CAIS, caregiver, hormone replacement therapy, HRT, intersex, love, marriage, marriage vow, medical system, spouse caregiver, surgery, trust / Posted in Bioethics, Education

Male Caregiver Feedback For Intersex Diagnosis

June 13, 2012 by survivor

Intersex diagnosis truthIntersex diagnosis and treatment is in need of a major revamp. There are several organizations of intersex people and intersex patients themselves who are also advocating the same thing. The protocol followed is called Standards of Care for the Health of Transsexual, Transgender, and Gender Nonconforming People and is produced by the World Professional Association for Transgender Health (WPATH) and the protocol is available here. No one has asked the young, male, spousal caregivers of intersex people. It is ironic that the recommended treatment plan involves a lot of psychosocial counseling only for the patient but none for the male, spousal caregiver. Is the male caregivers’ health at risk from the trauma and shock of relentless caregving? What are the bioethics of treating a patient at the cost of the health of the caregiver? We call to action to provide accurate diagnosis and end the cycle of secrecy. What are the human rights of the caregiver? Dr. Brian Goldman, a TED Talk speaker has shown great leadership in discussing medical facts truthfully.

Campaign for Truth and Informed Consent

Imagine a medical condition like Alzheimer’s. While there is no known cure, the best cure is to rejoice the moments there are. There is a lot of information and resources and support groups for caregivers of Alzheimer’s. The inclusive approach makes the experience so much better both for the caregivers and the patients. Isn’t truth the best way for all caregiver-patient relationships regardless of the medical condition?

  • There are tons of articles on how to deal with intersex diagnosis and the related trauma and psychosocial issues. So we will not discuss that here.
  • There are tons of articles on how to effectively use sensitivity with intersex diagnosis. So we will not discuss that here.
  • There are tons of articles on support and resources available for intersex patients and their parents. So we will not discuss that here.
  • There is hardly any information for caregivers on intersex diagnosis of a loved one, the person they love, trust and respect who lied to them. We will discuss that here.
  • In a reputable medical research journal paper, doctors concluded that “Patients with CAIS need proper counselling and education according to their psychosexual make-up and sociocultural factors.” But NO counselling for a traumatized spouse of CAIS who discovered the condition during a marriage? Why there is no HELP and SUPPORT for a spouse caregiver of intersex will be discussed here unless the message is that the spouse of intersex is WRONG and should not marry an intersex person?
  • Informed Consent – It becomes very hard for caregivers of intersex diagnosis to get correct and accurate information. How are they able to provide an informed consent?
  • Secrecy and Lying – There is a strategy of secrecy and concealment based approaches which affects the unsuspecting intersex patients and their caregivers the same. The caregivers also have to live a life of secrecy and stigma and is as much a psychological issue.

In a recent article, female rape victims were labelled “crazy”. The military is a great organization and we respect every service member for their sacrifices. The article suggests the “pattern” of a “a sexual assault, a command dismissive of the allegations and a psychiatric discharge”. No one is ready to take the victims seriously. We feel very sorry for the victims as young, male, spousal caregiver of intersex people and can empathize with them from the treatment they have got after the fact. For us the “pattern” is of “institutional secrecy and lying, false stereotypes of bias and intimidation against men, and a discharge of no support or assistance let alone acknowledging the facts. We hope someone is listening and see that a fair, scientific study is warranted to help cope caregivers of intersex patients on how to sensitively cope with the intersex diagnosis of a spouse and the personal trauma. As spousal caregivers, we are asking for the same access to information, resources, and dignity as parental caregivers of intersex patients.

Other Medical Diagnoses

Years ago I went to an eye doctor. He took out a 3D cross-sectional view of the eye. He did not think I understood what an eye is like cornea, retina and so on. Maybe if you remember your biology and are a little more inquisitive than the average person, you would know how an eye works and what are the inner parts of an eye. The eye doctor explained to me, a layman, in all sincerity, the different parts of the eye. The cornea, the retina, the “white part” and the “black part”, and the cartilage tissue and so on. It was interesting to know but it also explained to me why I should wash my eyes and how to wash them. I also understood why my eyes were red. I also understood why sometimes the eye drops I put in my eyes may travel down to my throat and I get a bitter taste of the medicine. Very logical. And I am not an eye doctor. All I had to pay was my co-payment of 10 bucks for this highly scientific and truthful lesson. The point is the doctor has to trust the patient to be able to absorb logic and be honest and truthful to them using props.

I can repeat the similar story above I had with my dentist once. He had taken a prop of a “generic jaw” and explained to me about my bite. Also explaining to me the difference between a crown and a filling and a root canal and why/when does someone need one. I am just a layman but using props, by taking the time, and by being ethical, this doctor gave me an honest, hollistic, logical explanation to me about the diagnosis.

I can repeat the same experience when I visited an orthopeadic surgeon. The doctor was very ethical and gave a good explanation of the diagnosis and was very honest and ethical about the diagnosis and our concerns. Thats how it should be.

Thank God but I have not had to go to a heart surgeon till now but I am pretty sure they use props and are honest about the diagnosis. I am sure there are more severe and more traumatic medical conditions in this world other than intersex. How are those diagnoses done?

The point is doctors know how to be ethical. The question becomes who are they being ethical to? Themselves or an “institution” or public opinion? And when mistakes occur like discriminatory systemic practices against a spousal caregiver of intersex Vs. parental caregivers of intersex, do they admit the medical errors like Dr. Brian Goldman for BETTER medicine or do they continue to perpetuate their medical mistakes? Are their actions benefiting medicine?

Honest Intersex Diagnosis

I am no doctor and neither plan to replace one. But common sense and basic human decency for all is something we can all agree on. I believe being a doctor is above all a very noble thing to do. They are some of the smartest people and they have to delve into very complex issues on a daily basis. Seems like there is no reprieve for a doctor and at the same time be able to go home to a loving family and help provide for them and protect them just like any other human being. In my years as a patient on multiple different occasions, I have always struck a good chord with my doctor. I have also witnessed that good doctors practice good ethics and do not lie or mislead regardless of the diagnosis. Then there is another side. Semantics, or choice of words is immaterial, their goal to use a strategy of “secrecy and lying” is at play. When an educated person, a doctor, decides to engage in a strategy of “secrecy and lying”, a layman is done for. First the layman has no idea they are being manipulated. Second by the time the layman figures out the manipulation, it is probably too late because the doctors have laid out the worst case scenarios. I wonder are these doctors who engage in a strategy of “secrecy and lying” more like “magicians“? You know, look this other way, while I do “magic” in the opposite direction. The point is when an educated doctor along with a system decides to engage in the strategy of secrecy and lying, a layman has already lost. The layman is living in a fantasy world if he/she thinks he can change the system. All the documentary evidence, the established certified protocols, the public outcry is against the layman. Either the layman can conform to the strategy of “secrecy and lying” or will be punished, marginalized, oppressed until the doers feel safe again to continue the strategy of “secrecy and lying”.

Intersex Diagnosis Now

Why can’t we have the same diagnosis principles for intersex diagnosis as with other medical conditions? Here is how a diagnosis goes today. I am very sorry to tell you but you have Complete Androgen Insensitivity Syndrome (CAIS). This means you are infertile and need surgery to remove the gonads because they pose a risk of cancer. How can I help you? Can I get you some water? WHAT?!?!?!?!?!? Polite people also lie and violate other people’s human rights.

To the layman, what is Complete Androgen Insensitivity Syndrome (CAIS)? Have you ever heard of it before? Is this like a fever or an heart attack that you know someone around you with a similar condition or is it a rare condition? As a layman, what is your exposure to this medical condition? As a layman, what is your experience in dealing with this medical condition? As a layman, what are your next steps? I can fill up the rest of this page with a laundry list of questions but I think you get the idea. CAIS or its full-form is gibberish to the layman. If I had not hyperlinked CAIS, how many of the educated reading audience here would have understood what I was talking about. I will concede that the words are part of the English language but what do they mean? You just sit there in an awkward, bewildered eureka moment that on one side you have answers as to why one is infertile but at the same time it opens up so many other questions.

Caregiver Appeal

As a caregiver, my most sincere appeal to the medical industry is to start using honesty and props when explaining an intersex diagnosis. It is already being done successfully for so many other medical conditions. Using euphemisms and trying to be politically correct is confusing the diagnosis. As a medical health practitioner, the paramount goal should be a good understanding of the diagnosis and then everything else.

It is even more ironic that part of the treatment plan for intersex patients is psychosexual counseling to deal with the trauma and crisis. What about the trauma and crisis caused because of a confusing diagnosis in the interest of a “secrecy and lying” strategy? The secrecy and lying make the medical condition worse than what it really is. Is this helping or compounding the issue?

We have not even begun to dig into the other issues that come up later because of a strategy of secrecy and lying. The sincere appeal is to please stop this. Education and creating awareness is the right long-term solution. With internet at everyone’s fingertips, using a misleading or confusing strategy will unfold very fast.

Imagine a democratic government of a country announcing to its citizens, we have been attacked, we are at war and then do nothing. I think it is common sense for the citizens of the country to expect the government to respond reasonably to the attack and then communicate honestly to its citizens. Doing nothing and not taking a hollistic approach is not the right solution and neither what the citizens reasonably expect. If there is “collateral damage” and both governments decide to “squash” the incidents of attack in the best interest of the two countries, who takes care of the loved ones who lost their lives as part of the “collateral damage’?

1 Comment / Tags: AIS, Androgen Insensitivity Syndrome, bioethics, caregiver, change, diagnosis, intersex, male caregiver, men's health, spousal caregiver, support, support groups, truth, young caregiver / Posted in Bioethics, Change

Third Gender – Equality and Truth

May 29, 2012 by survivor

It is a brave and honest person who can stand apart from the masses and openly challenge its most treasured beliefs. ~ Donna Evans

As humans, we understand a little about our complex bodies even with the greatest medical science. It is what it is. Then why lie? Secrecy and stigma are worse than the condition itself. Without truth and transparency, it is difficult to pass laws, provide equal rights, offer support and help for all. We need to have an environment which encourages truth, tolerance, and respect for all.  Are there only two genders or is there a third gender? Regardless of which side of the issue you are on, we can all agree that truth is always the right option and secrecy and lying have no place for a long-term solution in a civilized society. There are several issues with secrecy and lying. First it is wrong. Second it does not take into account the feelings and trauma of the person being lied to. Third it could lead to criminal acts such as if lying is a crime under oath. What are the bioethics for disclosure to spouses?

It is NOT about gender identity or it is NOT about the sexual identity, it is about the HUMAN identity which is to say the truth.

As a human being, everyone deserves a feeling of “belonging”, understanding and acceptance. Without recognition of the truth, how will an intersex person marry legally or how can an intersex couple (who are infertile) adopt a child legally or have a child through in vitro fertilization (IVF) legally?  What about the equal laws and rights of the young, male, spouse caregiver of the intersex patient? Truth above all is the right long-term solution. If allowing a “third gender” option helps foster saying the truth then maybe that is the path to take. By saying the truth, one can get rights and people are making changes in the third gender community including wanting legalizing sex reassignment surgery (SRS).

The Truth – Some Want The Third Gender and Some Don’t

Gender identity and sex identity are biological, cultural or biocultural? The western culture and laws have a narrative of binary gender – male or female. As a result, several resources and money are utilized to promote science, research, groups, communities, viewpoints only from a binary gender perspective. While for centuries, the existence of “third gender” is widely accepted in South Asian cultures like India, Pakistan, Bangladesh, Nepal and other places like Phillipines, Oman and so on. In Hindu religion, hijras are both recognized and have a special status. Culturally, people have a right to be allowed their freedom of expression as noted by Nepali LGBTI politician and activist. After all, diversity should be tolerated and celebrated. Through centuries, the “third gender” has been institutionalized and also holds a special relevance in the society. The “third gender” are enjoying more civil rights; being counted in the census, right to vote, option to display third gender on passports, and other freedoms. The “third gender” is legitimized in several places in the world. Above all, the “third gender” are free to express the truth as they see it – a fundamental right of any human being.  The western narrative of binary gender could overshadow the cultural diversities and the viewpoints of others in the world who believe in the “third gender” and respect it. With globalization occurring at a faster pace than ever before, it is important to account for everyone’s voice to be heard and be respected and not just the loudest voice in the room. It also so happens the South Asian countries happen to be some of the most populous in the world and statistically would have more “third gender” persons. Has their voice been heard or considered? Non-western cultures have accepted the truth as nature delivers for centuries instead of forcing people to use a strategy of secrecy and lying. In truth, there is respect for all human beings. Shouldn’t we be working towards an environment that fosters saying the truth?

Binary Gender Viewpoint

This is a debate which may never end. The binary gender viewpoint assumes there are only two genders in the world – male or female. Implicitly, are they denying the rights of people on how they should feel? There are several accounts of intersex people who feel neither man or woman or feel both, it just is. Why cannot intersex people feel as they do? Ironically the proponents of intersex communities fall prey to the heteronormativity norm and educate their members that they should “feel” like a woman or a man. They do not introduce the concept of the “third gender” in their education and awareness. Some members of the community just might feel more comfortable identifying themselves as the “third gender” if the option were available. And when the communities do not take up a unified approach, it is hard to change laws and instead succumb to the binary gender norm. Inadvertently, they may be even encouraging a culture of secrecy and lying which could be more devastating than the condition itself. There are instances who want a definition of gender based on biology, how will that help people who do not fall into either category? Are these viewpoints taken into account? The fundamental question is does the binary gender viewpoint encourage an environment of truth, tolerance, and respect for all?

Third Gender – Truth for Inclusivity

The best thing about recognizing the “third gender” is it gives an option for those who would like to opt for saying the truth. As a human being, they do not feel confined to a binary definition of gender. The feeling of freedom of expression is priceless in its own way for every human being. Contrary to popular belief, the binary gender approach is impeding progress in freedom of expression as noted by a famous Nepal activist and politician. Giving the ability to a person to identify themselves freely gives them the chance to say the truth. It offers them freedom from living in secrecy and lying. They can build better, meaningful relationships based on understanding and acceptance. Without recognition of the truth, how will an intersex person marry legally or how can an intersex couple (who are infertile) adopt a child legally or have a child through in vitro fertilization (IVF) legally?  It is about respecting feelings of all including the caregivers of intersex people who may have been lied to. It is important for the caregivers to be allowed to share the truth freely as they see it just like an intersex person is allowed. Or are we going to advocate infringing on caregivers’ minority rights? Are there equal laws and rights of the young, male, spouse caregiver of the intersex patient? In the end, let truth prevail. Education and awareness “inclusive” of feelings and sensitivities of all is the right solution. Imagine a medical condition like Alzheimer’s – a very traumatic condition both for the patient and the family caregiver. There is a lot of information and resources and support groups for caregivers of Alzheimer’s. The inclusive approach makes the experience so much better both for the caregivers and the patients. Isn’t truth the best way for all caregiver-patient relationships regardless of the medical condition?

“We often talk about moral values, justice and trust, but the important thing is to put them into effect in our everyday lives.” – Dalai Lama

East or West, Truth is the Best

Here is an excerpt from a recent article:

Male-to-female transgenders, also known as “hijras”, have a long history in South Asia, experts say. The Sanskrit texts of the Kama Sutra, written between 300 and 400 B.C., refers to a “third sex”. The Kama Sutra is an ancient Indian Hindu text on human sexual behavior in Sanskrit literature.

During the Mughal empire in the 16th and 17th centuries, castrated hijras – or eunuchs – were respected and considered close confidants of emperors, often being employed as royal servants and bodyguards. These jobs were so coveted that historians say some parents actually castrated their sons in order to attain favor with the Mughal kings and secure employment for their children. But despite acceptance centuries ago, hijras today live on the fringes of Indian society and face discrimination in jobs and services such as health and education.

“I think things are different today because of the kind of laws that were introduced to India when the British came. The whole concept of unnatural and natural was defined in our law,” said Indian gay rights activist Anjali Gopalan.

*************End Excerpt*************

This treatment stems from the British enacted legislation: ‘The Criminal Tribes Act 1871’ under which hijras were criminalized and persecuted. This is not about the East Vs. West. This is about the truth. Accepting the truth. Understanding the truth. Looking ahead with the truth. If we continue to sow the seeds of secrecy and lying, there maybe no fruit to enjoy.

By being truthful, the “third gender” for centuries were able to get more recognition and have a better life than today. What have they achieved  by secrecy and lying either for themselves or the ones they come in contact with?

Out With the Old…And In With The Truth

Traditionally, the medical approach has been for intersex people to have sex reassignment surgery(SRS) with or without the consent of the patient and an institutional strategy of secrecy and lying is used. Why? Today advocates of intersex people want to move from a traditional “concealment-based approach” to a “patient-centric approach”.  It is the right direction because it involves saying the truth. Have they gone far enough and “included” everyone in the “new solution”? What about including caregivers of intersex people? For example, when the surgery and treatment occurs while in a marriage and what it does to an unwitting young, spousal caregiver? Who is the advocate for the rights and what is in the best interest of the spousal caregiver of intersex people? Given that equal rights of LGBTI are still in the making, equal rights for caregiver of LGBTI are not even being discussed or on the horizon because the truth is silenced. Intersex people can identify with the issues of secrecy, lying, trauma, crisis, stigma, sensitivity, and so on. A caregiver has their own feelings as a patient caregiver of this medical condition. Worse yet if the caregiver was lied to and brought into this situation unknowingly. Having a genetic condition is no one’s control but lying about is in their control. The struggles that intersex people have gone through and are still going through are well documented and are beginning to gain some ground in altering traditional stereotypes. They will be the first ones to recognize then how much of an uphill it is for a caregiver of intersex people to be recognized. Just stick with the facts – the truth. Caregivers have all the sensitivity for intersex patients but sensitivity has to be two ways. Can we show some sensitivity to the silent, isolated, often intimidated, stigmatized, bullied, caregiver of intersex patient? A far smaller minority than the total population of intersex patients.

2 Comments / Tags: AIS, Androgen Insensitivity Syndrome, binary gender, bioethics, change, eunuch, hijra, intersex, IVF, others, third gender, truth / Posted in Bioethics, Change

8 Tips For A Caregiver of Intersex or Androgen Insensitivity Syndrome (AIS) Patient

May 10, 2012 by survivor

Tips for Caregiver of IntersexSomeday we will all live in a world where truth is prevalent and respected. 

Intersex or Androgen Insensitivity Syndrome (AIS) is a condition that affects sexual development before birth and during puberty. People with this condition are genetically male. They may have female sex characteristics or signs of both male and female sexual development. It is well-documented that the treatment plan for AIS patients is part physical where a sex reassignment surgery(SRS) is needed to remove the male testes and subsequent Hormone Replacement Therapy (HRT). In addition, the treatment plan also calls for psychosocial counseling for severe trauma and crisis issues. There is secrecy and stigma issues which hold back the information from being shared and thus help is scarce. There are some reports available on LGBT caregivers geared towards issues of elder LGBT caregivers and even they cite lack of data and secrecy issues. Little information is available for young, male, spousal caregiver of LGBTI. When the secrecy and stigma are overcome and we can freely discuss Intersex care, an inclusive approach including palliative care for intersex patients and family will be available.

  1. Respect and Dignity - Commit yourself as a caregiver to show respect and dignity for all humans. In the unfortunate event you have been lied to as a caregiver, find support for yourself but continue to show respect and dignity for the patient.
  2. Patience – When someone undergoing SRS and HRT as an Intersex patient behaves badly or becomes unruly or threatens. Never see their behavior as a personal attack. As a caregiver, you must understand that occasionally they have no control over their own emotions.
  3. Love –  Remember when the person was healthy and vibrant, full of life, love and laughter--treat them like you would treat them if they were not undergoing treatment for Intersex. As per a recent study by Fred Hutchison Cancer Research Center, women are 6 times more likely to be divorced or separated when diagnosed with a major illness. You stayed on as a caregiver. There is always hope after the treatment stabilizes, try to look ahead for the good days.
  4. Doctor Visits – If your loved one, the Intersex patient asks you to go with them to the doctor’s visits, make sure you have the prior approval of the doctor. It may be prudent to research the doctors before beginning treatment so that there is no disappointment later on and lack of support issues do not arise. You can help the Intersex patient by learning about different treatment approaches and ensuring the health care provider respects a patient centered approach.
  5. Secrecy – The patient and their ecosystem including medical professionals may demand secrecy. Even though, as a normal human being and as a caregiver you may be in shock, learn to deal with the secrecy and lying. It is part of easing the traumatic condition of the Intersex patient.
  6. Science and Medicine Help – Intersex is a rare medical condition. It is even more rare to have a spouse as a caregiver of an intersex person and very scant data is available. There are no scientific studies or research available on this rarest of rare situation. The secrecy and stigma only compound the problem by people not speaking up. Your experience as a young, male, spousal caregiver of Intersex patient while very rare is real contrary to popular belief now. Be sure to take care of yourself or you may have long term health needs of your own. Like Galileo observed, the earth is not the center of the universe contrary to popular belief at the time. Eventually, science and society will recognize your needs as a caregiver and as a patient because it’s the truth.
  7. Intimacy – It may be difficult to have intimacy with your loved one while undergoing treatment due to the wild  emotions and the physical limitations at times. Work through these issues with patience and understanding while keeping in mind the behavior of the patient is not a personal attack.
  8. Caregiver Respite – The Intersex patient is most important. Everyone involved wants secrecy and by recognizing the caregiver, the ultimate secret may be outed. Will be difficult to get respite unless someone else in the know or in the family steps up.

Imagine a different medical condition like Alzheimer’s. While there is no known cure, the best cure is to rejoice the moments. There is a lot of information and resources and support groups for caregivers of Alzheimer’s. The inclusive approach makes the experience so much better both for the caregivers and the patients. Isn’t truth the best way for all caregiver-patient relationships regardless of the medical condition?

Someday we will all live in a world where truth is prevalent and respected. Are we there yet?

No Comments / Tags: AIS, Androgen Insensitivity Syndrome, bioethics, caregiver, dignity, intersex, intimacy, love, male caregiver, patience, respect, secrecy, spouse caregiver, support, truth, young caregiver / Posted in Education

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