ON the Tenth Day of Intersex we draw your attention to the intersex aged, to intersex aged care and how that affects intersex lives.
What is intersex?
Intersex people are people who, as individuals, have congenital genetic, hormonal and physical features that may be thought to be typical of both male and female at once. That is, we may be thought of as being male with female features, female with male features, or indeed we may have no clearly defined sexual features at all.
How do intersex people fare when older?
This is a difficult question for aged care providers, governments, general practitioners, medical specialists and families.
When medicine quotes statistics on long term follow-ups they seldom mean following up on people with intersex differences beyond the age of thirty. They never refer to intersex people beyond the age of fifty.
The situation for older intersex people can be broken up into a number of areas of concern.
Older intersex people & medication
Many intersex people are given medications for which there are no data on the long-term use or where long-term use is in fact recommended against.
Intersex people with Congenital Adrenal Hyperplasia
Mineral corticol treatment such as florinef was only discovered in the 1950s. Those of us who have been using it since birth are the guinea pigs so far as long-term use is concerned. There are currently no studies being conducted to see what health effects its long-term use has on us. We are considered to be “lost to research”. A quick look at the PBS database would, of course, reveal all the uses of this drug.
Dexamethasone (DEX) is also prescribed to those with CAH to supress adrenal function. This drug prevents the over-production of androgens in the adrenal gland. In infants the overproduction of androgens can lead to precocious puberty – early puberty.
Early puberty leads to growth spurts in very young children then early closing off of skeletal growth plates before potential height has been achieved. Virilization of the genitals is also an effect of the overproduction of androgens. Dexamethazone is prescribed to adult CAH “women” to prevent masculinization. The effects of long-term use of this drug by individuals with CAH are unknown.
Complete and partial Androgen Insensitivity Syndrome (AIS) and XXY/Klinefelter’s syndrome
Those with AIS frequently have their gonads removed because doctors suggest there is a chance of cancer if they are left in place. The assertion is not uncontroversial. Dewhurst (1971) reported no malignancy in a study of 87 people with AIS and Manual et al (1976) by combining two studies concluded a maximum of 22% by age 30. Subsequent studies reiterate those earlier findings so that the high range number of 22% has not been subjected to scientific repeatability. Dewhurst’s study indicating 3.2% is the most widely accepted figure.
As a brief aside, the risk of breast cancer for all women is around 12.2 % <http://www.cancer.gov/cancertopics/factsheet/detection/probability-breast-cancer>. For AIS women the risk of testicular cancer is around 3.2 % (Dewhurst 1971). I wonder, then, why doctors do not contemplate removing all women’s breasts given they seem to think it is a good idea to remove all women’s testicles because of the risks?
For people with AIS and PAIS differences gonads provide testosterone. That testosterone cannot cause the body to masculinize because the cells in the body will not react to androgens. Testosterone is nonetheless needed as it is converted by the aromatase process to oestrogen, an essential hormone for very many reasons. Removal of gonads means the individual in question will be required to take hormone replacement therapy (HRT) for the rest of their life.
The long-term use of feminizing hormones such as oestrogen and progestin is strictly advised against by the drug manufacturers. All of us who are required to take them look at the little leaflet that comes with the tablets, patches, and injections with a combination of puzzlement and apprehension. Not one manufacturer recommends taking them for more than one year.
A quick Web search will reveal that all studies of the risks from using feminizing HRT are about non-intersex women and focus on post-menopause use and the like. There are no studies on the efficacy of intersex people using HRT over time. What we do know is the cumulative result may mean a risk of cancer of around 20% if we rely on a combination of all the studies done on non-intersex people.
For XXY individuals, testosterone or sometimes a combination of testosterone and oestrogen is used. As with feminizing hormones, outcomes for the long-term use of testosterone have not been studied with intersex people. Generally though, long-term testosterone use is considered to have detrimental side effects with prostate cancer a possibility <http://www.andropausespecialist.com/negative-effects.html>.
With all prescribed medications used by intersex people there is absolutly no data to indicate how we may fare using them over our lifetimes and no data to validate their prescription for long-term use. In fact there is a paucity of data for anyone using specific medications over a period of forty or fifty years.
Intersex people and care
When intersex people reach an age where community care is essential, we are faced with various dilemmas. Fundamental to all of these is the shame and secrecy constructed around our differences and ignorance amongst those around us and especially care providers about what intersex is. Most have never even heard the word.
We most likely come to all care situations with our differences a deeply held secret. For those of us who have bodies that are unmistakably intersex the protocols and types of care provided, showering, medication, and so on, will, in all probability, “out” us. We may then find that the provider of the service, frequently religiously based, takes a different and more distant view of us. We might find services harder to access, in-home carers more difficult to get, and the quality of the care we are given then may well be substantially reduced.
In-home care for intersex people
In-home care is provided by a number of separate organizations doing different things to assist elderly or infirm people manage their lives in their own home. This includes community visitors, services under an aged care assistance package, homecare, lawn and home maintenance, assistance with medications, shopping and community outings and tours.
In every instance, situations where an individual’s intersex differences might be revealed can affect the quality of the service. With all of these services, limiting of or the complete withdrawal of services because a person is intersex is quite legal. Intersex people have no protection whatsoever against discrimination in Australian law. Religious-based organisations such as Catholic home care or Baptist community care are well within their rights to refuse service to intersex people.
Questionnaires and application forms when applying for any of these services and particular for a home care package are extensive and penetrating. Pre-existing illnesses or “conditions” must be disclosed. Staff taking notes and filling in applications have no training around intersex differences and the various underlying diagnoses. They are inclined to push us into the “queer” category and then apply their homophobic misunderstanding of what such differences mean and act accordingly.
Consequently intersex people are less likely to apply for assistance packages or help if the invasion of our personal spaces and lives is a necessary prerequisite. We are inclined to battle on by ourselves regardless.
Aged accommodation and nursing homes for intersex people
All of the things we may have avoided with in-home care are completely unavoidable in aged care accommodation. The ability to “keep oneself to one’s self” rapidly disappears as our need to depend on others to provide assistance with day-to-day tasks increases.
Our medications, our bodies, our relatives, any number of tiny indiscretions or social signals may give our differences away. To those we have come to live amongst there is certain to be no knowledge about intersex. Staff, community visitors, medical professionals, the other inhabitants of the facility, won’t have a clue. Their reaction to our differences is predictable – rejection, however polite and well mannered that might be.
Aged care facilities are most knowledgeable around the most common and least knowledgeable when the less mainstream is encountered.
No aged care providers are required to provide intersex-inclusive training or to be intersex-sensitive to qualify for government money or accreditation. No law protects intersex people in aged care against discrimination on the basis of their intersex differences.
Governments currently provide no intersex-specific places in aged care, no intersex-specific training and no intersex-specific funding of any sort.
In aged care accommodation the peculiarities of our medication regimes and bodies are lost in a system that seeks a one-size-fits-all solution. Our lives are shortened because the long-term effects of our medications are unknown and no one is looking to see how they affect us or are even considering them as a complicating factor along with the other health issues that effect ageing.
Grossly neglecting intersex people in this way is perfectly legal in Australia. There are few enough protections for aged Australians. There are none at all if you are aged and intersex.
Aged care for intersex people amongst family and friends
Intersex differences can be challenging for a person in aged care even when they are not intersex themselves. Elders in aged care who have intersex family or friends might confine themselves to their room or seek to greet their visitors outside or in private spaces fearing that they will themselves be ostracised if other residents or staff become aware they have “queer” relatives.
Photographs depicting their relatives or friends as ambiguous or overtly queer will never find a place on the wall save for the hour or so during the visit of the person so photographed. Visits to shared areas of aged care facilities will be rare for relatives who may reveal the cared person as having ‘problematic’ friends or family. Excursions to more distant care centres and restaurants where the aged person is unknown will be the usual lot for those of us who don’t fit the bill as “normal”.
For the aged person this is no trivial thing. Being outed as having intersex family or friends can mean exclusion in what is effectively your own home. The elder may find her pool of acquaintances and friends drying up and that they sit alone at meals. They might find disparaging remarks and whispers being made when they are around and that those who tend their room stay for a shorter time and are inclined to be terse in their interactions.
Most of this discrimination is covert. In this day and age overt rudeness and bigotry is seldom the case. People are clever enough to engage in “plausible deniability” thus further increasing the sense of isolation felt by the person targeted.
Isolation and loneliness are felt even when no one in the facility knows the connection between a person in care and their intersex family or friends. Our elderly relatives have to sit in the dining room, craft classes, and community film nights or when the television is on in the day room and she is forced to listen to every kind of disparaging remark when intersex becomes the topic of the moment.
Our relatives have to bite their tongue and suffer in silence or out themselves and suffer in a different way.
A personal reflection
As long-time carer for an aged person as well as having my mum in an aged care facility I have experienced the following:
1. Less than full in-home services provided to the person I cared for because of the religious conviction of the organization providing aged care in our town.
2. While in hospital for life-preserving surgery, an aged care community visitor provided by a religious organization removed the person I was responsible for from the home to a solicitor, had an intervention order taken out against me, had a power of attorney revoked and attempted to have the will of the person I was caring for changed. The visitor had told my old friend I had left for good and would never come back. My friend was understandably devastated. She had forgotten I was only in hospital. The organization that provided the visitor was unapologetic. The whole business cost in excess of $4,000.00 in legal fees that I had to spend on getting the intervention order dismissed, the power of attorney reinstated, the will reverted and regaining my guardianship from the guardianship tribunal.
3. Refusal to provide me with assistance getting respite and in-home care when I was ill by the aged care assessment team, and aged care package provider. Both of them are religion-based and are contracted by the Government to provide the service. They are legally able to discriminate against me as I have no protection at law as an intersex person
4. Refusal to provide me with information about service availability and accessibility. I had to find out one by one what I could get and I had to find and organize every respite and in-home care package. In the end I was provided with no assistance of any kind.
5. I cannot go to the dining room when visiting my mum if I take my partner. My mum has no pictures of my partner and me on the wall.
6. My mother has to sit in silence while disparaging remarks are made about intersex people – during the Caster Semenya incident especially – gay rights and marriage equality. Mum feels both vulnerable and isolated because of this.
7. If the law changes to full marriage equality my mum will never be able to tell everyone about my wedding in the way the she is currently boasting about my nephew’s wedding. My own possible wedding will have to remain a secret in mum’s own home, a nursing home.
Chairperson, Organisation Intersex International Australia Limited (OII Australia)