Intersex and aging or aging with trauma

Written by Belgin Günay

While the intersex issue is more socially, politically, psychologically and biomedically relevant today than ever before, there is still one part of it that remains in the shadows, with almost no resources available in any language: growing old as an intersex person.

The intersex issue is often medicalized and therefore, in terms of rights advocacy, it focuses on childhood and adolescence, when non-consensual medical practices are concentrated. When we look at the intersection and solidarity of intersex with LGBT+, we see a style of activism that author Iain Morland described as “queer hedonistic activism” in the past years, where the issues of queer individuals (let’s not ignore the slogan “Love is Love”) were reduced to love, dating and sexuality, and the elderly, who were thought to “no longer exist in these areas”, were completely excluded. This activism approach could not add anything to intersex individuals who have problems, expectations and needs in many different areas.

Now, as LGBT+ advocates are expanding from this approach to other areas such as aging studies, climate change, queer people’s economic challenges and education, intersex people, who are often less visible within this group, are beginning to have the opportunity to speak out in these areas.

The May 17th Association’s work on ageing and its inclusion of intersex people in this work has led us, intersex activists in Turkey, to think more about ageing. On October 26th, just before the Intersex Solidarity Day, the association gathered together for their work on aging and listened to our views and demands in this field, and this year’s intersex weeks marked the first time that we had to put aging on the agenda along with other issues.

From my own experience, when you look at encyclopedias and other sources on intersex, you see that most of them deal with intersex from a medical point of view, and in texts that are full of outdated information or do not take into account individual differences, environmental conditions, care, etc., you may come across statements such as “this intersex condition has a slightly shorter life expectancy”, “this intersex condition has a very high risk of uterine cancer after the 30s”, etc., which can sometimes be horrifying. These statements may not be based on very detailed and scientific studies, because there are not enough studies on intersex. Also, even if the health risks are not significantly different from the average person, when it comes to intersex, they can be medicalized and dramatized more. As someone who is not an expert in medicine or biology, I may have read and misinterpreted this information without having enough knowledge to understand it. As a result, the first time I met a healthy and alive intersex person over the age of 50, I felt like I had seen a miracle. I would like to say to intersex people who are getting older or who are afraid of their old age that you are not just a medical case, just as other genders can have health problems related to their reproductive systems or biological conditions, so can you, this does not mean that you are “broken” and “short-lived”. Just do your best to take care of yourself and try to enjoy life.

Feeling late for life
When I think of intersex and aging, the first thing that comes to my mind is “aging with trauma”. Intersex people, many of whom have experienced traumas such as non-consensual medical practices, child abuse, ostracization, lies and being raised with shame, are often left behind in life. Developments or milestones that other people experience at a much younger age come late or not at all for intersex people. Intersex people, who have less access to the chance to build themselves as individuals, suddenly face the changes brought about by aging while they still feel like children in terms of their social and psychological status.

A romantic relationship, sexual exploration and discovery, coming to terms with their past and their family and easing their baggage into adulthood, building a career, owning a car or a house, getting married, having children – all of these are things that intersex people experience later, more difficult or not at all. The reason for this limitation is not being intersex, but the way society treats intersex people and what they put them through.

The problems intersex people face in accessing their past medical documents, the obstacles they face when they want to undergo gender transition, when they want to change their official documents or when they want to get legal recognition on any issue are among the problems that prevent them from moving on with their lives.

Isolation and restriction
Non-consensual surgeries leave both psychological and physical scars. Sterilization is one of these traces, although most intersex people are not born with the ability to reproduce, some of them have this ability, but “normalization surgeries” performed by doctors in line with social expectations can result in sterilization. Since the legislation on adoption, surrogacy and having children through other means is not LGBTI+ friendly at all, and since we are a society that expects marriage in order to have children and we do not have LGBTI+ friendly laws in the field of marriage, intersex people, unlike many other people, are left alone without a child to care for them in old age. On the other hand, an intersex person who is not married and has no children may have to take care of their aging parents as they get older. For an intersex person who has been referred to non-consensual medical procedures by their parents, this can lead to even more complex caregiving concerns than in the general population.

An intersex person who lives in secrecy during adolescence, who cannot come out to their extended family and relatives, may not have close and warm relationships with relatives so that they will not be alone later in life. The fact that intersex is often associated with LGBT+ and LGBT+ is seen as an immoral or deviant group by society can lead some intersex individuals who were born and raised in poorer or underdeveloped segments of society to stay away from intersex organizations. This isolation can also mean internalizing the social view that sees them as sick and living with shame.

It is a widespread and inaccurate attitude that older people are seen as “sexless” in society. Intersex people are seen as a threat to normative sexuality or as sexless beings, not only in old age but from the very beginning. This makes dating and sexuality even more difficult for intersex people due to intersex invisibility and societal prejudices. Added to this is the fact that aging intersex people can lead a lonely and introverted life.

Health problems
Non-consensual surgeries and hormone replacement cause many complications and health problems for intersex people in old age. Due to the removal of all reproductive organs that can produce “unwanted” hormones in non-consensual surgeries for forced gender reassignment, more specifically, due to the removal of gonads that can produce testosterone, especially in intersex people who will be forcibly assigned as women, intersex people are condemned to constant hormone replacement from a young age and face a very serious risk of osteoporosis (osteoporosis). This condition can even lead to impaired mobility in old age. According to a study conducted in the USA, the most common chronic health problems among intersex people surveyed were asthma (27.3%), arthritis, gout, lupus and fibromyalgia (27.3%), hypertension (24.7%) and osteoporosis (22.7%). The number of individuals reporting osteoporosis and hypertension increased with increasing age. More than a third of the study participants described their general health as “poor”, regardless of age. The proportion reporting severe concentration, memory and decision-making difficulties reached 50%, even among younger participants. This can also be linked to mental health problems, which we will look at later.

Hormone replacement is another matter. There is not enough data and scientific studies on the negative effects of lifelong hormone replacement for osteoporosis and other problems on intersex people. In addition to the side effects of hormone replacement, unless you are an intersex person who is legally transgender, you do not have the option to say “I want to take the other hormone, not this one, or I want to take both of them together”. So, let’s say you were forcibly assigned as a woman, then you recognized yourself, became conscious, came out as non binary and you don’t want to take estrogen but you don’t want to take testosterone either. On the other hand, if you don’t take any hormones, you may have health problems, but in such a case you may not have access to doctors who will listen to you, take you seriously and offer you specific options. Fear of doctors and hospitals is not only related to past traumas for intersex people, intersex people can also face exclusion, humiliation or shame at any point in their lives when they go to a medical institution for a health problem that is not related to their condition.

For everyone, old age is a time of increasing health problems. For intersex people, this means that they will need to see more doctors who have traumatized them, and spend more time in hospitals where those traumas have occurred. Often, intersex people put off health problems until they are at the point of life and death to avoid seeing doctors, a risk factor that can seriously affect quality of life in old age. Especially for intersex people who have chronic diseases and need regular medical check-ups, life expectancy can be reduced if they fail to do so.

Spiritual problems
Many intersex people are survivors of intentional mutilation, assaults on bodily integrity and sexual abuse. Often growing up with medical malpractice, abuse, body dysphoria, betrayal by family for the sake of societal expectations, silence and shame, intersex people can live with post-traumatic stress disorder. There are scientific studies claiming that post traumatic stress disorder affects DNA and shortens life span by accelerating aging. Symptoms such as sleep difficulties, concentration difficulties, irritability, outbursts of anger, aggressive behavior, excessive feelings of guilt or shame, alcohol addiction, and recalling traumatic events over and over again, triggered by small things, also reduce quality of life. Add neglected mental and physical health and the picture is not promising.

Studies have shown that intersex people experience psychological problems at a higher rate than the average of the society and other LGBT+ groups. The process of medicalization of intersex begins when the family feels that there is a diversity or difference in their child and goes to specialists for counseling, and from this moment on, the lack of adequate psychological and social support for the family and the intersex individual, and the fact that the issue is seen as a purely medical issue independent of identity, as a simple tonsillitis and tonsil surgery, sows the seeds of problems that will grow in the future. Intersex individuals may avoid meeting with doctors in their future lives, and may also avoid receiving psychological support due to discrimination and fear of not being understood. Even if they want to receive support, it is more difficult for them to access and it may not be possible to find affirmative or non-discriminatory support.

According to the US study, 61.1% of all intersex participants reported a diagnosis of depression, 62.6% reported a diagnosis of anxiety, and 40.9% reported post-traumatic stress disorder. Considering that undiagnosed people with this problem were also included and that not all of the participants may have undergone non-consensual surgical intervention, it can be said that the rate of those with post-traumatic stress disorder may be much higher. In the same study, 28.6% of intersex people had suicidal thoughts but did not attempt suicide, 10.1% attempted suicide but said they did not want to die, and 21.7% attempted suicide but said they really wanted to die. There was no significant increase or decrease in these rates with age. In other words, intersex individuals who have suicidal thoughts in their youth may continue to experience the same mental problems in their old age.

Income and employment
Along with other forms of discrimination, the pathologization of intersex people has a negative impact on their employment potential and their chances of earning an adequate income.

An Australian study found that 40% of intersex respondents lived on less than 20,000 Australian dollars. Including overtime and bonuses, the average annual wage in Australia at the time was 80,054 Australian dollars a year. Only less than 10% of intersex people surveyed reported earning more than this average annual wage.

A European study found that 51% of households with an intersex person struggled to make ends meet. 27% of intersex people have experienced discrimination when looking for a job and 32% have experienced discrimination at work. Again, 29% of intersex respondents stated that they had constant housing problems throughout their lives, and 5% stated that they sometimes stayed outside without a roof over their heads.

Old age is a time when you are no longer able to work and health problems are likely to increase your expenses. Therefore, intersex people with limited access to education and employment, health problems and psychological trauma are more likely to be poor in later life than the general population. These adversities affect intersex older people’s chances of having a comfortable retirement and receiving appropriate medical care.

Solution proposals
The most important solutions include the training of professional groups providing care and services to intersex people, raising intersex awareness in society, increasing the legal struggle for legal recognition and protection, and organizing for all of these.

Organizing and solidarity, creating networks where aging intersex and LGBT+ people can continue their struggles and build friendships without being alone, can significantly increase the chances of a quality old age and life expectancy. These networks can support aging individuals in many areas, such as providing them with new hobbies, supporting their socialization, and providing counselling for health problems. Psychological counseling and peer support can be provided to aging intersex people to help them love their bodies more, accept the reality of aging, mitigate the effects of past traumas and try to enjoy the rest of their lives. The lack of data is also an important problem in determining what needs to be done in this field. Making an effort to collect more data on intersex people in future studies on aging will help to clarify the problems and what can be done.

In this sense, as I mentioned above, I see the work on old age initiated by the May 17th Association as very promising and positive.

Sources:

https://www.headtohealth.gov.au/supporting-yourself/support-for/intersex

https://www.wikiwand.com/en/Iain_Morland

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