Header logo and text: Yellow. Purple. Silver. What about intersex seniors?

An Ageing Society 

Our societies enter a time where the demographic is changing towards an ageing population that brings certain challenges for the human rights of older persons, such as ageism as a specific form of discrimination against older /or perceived “older” persons. Older intersex persons will face these challenges just as everyone else, but also will face additional ones that are specific to being intersex. 

“Older lesbian, gay, bisexual, transgender and intersex persons are one of the most vulnerable groups, receive insufficient services and end up with poor health outcomes. They are also one of the most invisible groups in old age due to the social stigma and are largely ignored by national laws and policies and by society at large. They may experience multiple forms of discrimination due to the stigma linked to their sexual orientation, gender identity and sex characteristics.”

End of Mission Statement

by the United Nations Independent Expert on the enjoyment of all human rights by older persons Ms. Claudia Mahler, on her visit to Finland, Nov 2021

Introduction

There is more awareness today on the human rights issues intersex people face. But while this mostly focuses on the diverse impacts that pathologization and harmful medical practices such as IGM have on infants, children, or young adults that were born with variations of sex characteristics, less is known about the situation of a population that has been appearing over the last 70 years:

Ageing intersex persons as survivors of IGM and other medical harmful practices.

“I hope that when I’m old I have people around me who do not discriminate me or make me feel uncomfortable when I need their help…”

Anonymous

Community Member

“I am tired of explaining about my situation to a new doctor and receiving this mix of curiosity or being viewed as an ‘interesting case’ – like a spectacle in a freak show”

Anonymous, 60

Community Member

“[…] a population of people are now entering early old age with little to no information about what that means. Many of this population have histories of non-consensual medical interventions and are living with the ongoing effects, physically and emotionally, of those interventions. Additionally, they can struggle to address their ongoing health needs because they have been lied to, or had information withheld, by various clinicians over their life histories as patients.”

 J.R. Latham and M. Morgan Holmes

The Sexual Rights of Older People: Theory, Policy and Practice (pp.84-96) Chapter 7: INTERSEX AGEING AND (SEXUAL) RIGHTS, Publisher: RoutledgeEditors: Sharron Hinchliff & Catherine Barrett, 2017

A new population

Elderly intersex persons are a new population [1] of people, one that was impacted, often from a very young age, by the systematic medical “management” of intersex bodies, which began to spread around the globe in the 1950’s.

Individuals who were subjected to these harmful practices continued to grow into adults, that had to cope with the life-long consequences such interventions had on their body and minds, and often without being informed or lied to by their health care providers. They often face multiple issues and challenges, among them: 

Health-related issues

Health-related issues that include:

  • Lack of right and access to health and adequate medical follow-up and support in regards of past medical interventions they experienced during their lifetime;
  • Complications acquired from past medical procedures, often in childhood and youth;
  • No access to knowledge about past interventions or the persons original bodily state and its lost visible intersex traits and related documentation omitted or perished
Discrimination and more

Experience of discrimination, hate speech, hate crime and violence:

  • Based on the findings of the LGBTI Survey 2019 by the FRA, intersex persons’ experience of discrimination, hate speech and violence are among the highest in the group of LGBTI respondents
  • 36% of the intersex persons 55 years and older experienced their last incident of being discriminated by healthcare or social service personnel (e.g. a receptionist, nurse or doctor, a social worker)
    [FRA Data Explorer] [2]
A binary system

A binary system perpetuating these hardships

In a binary society “being human” is strongly connected – in everyday life as well as legally – to “being male” or “being female”, to being a “man” or a “woman”. This is impacting intersex persons’ lives on multiple levels:

  • In regards to Legal Gender Recognition and legislation
  • in Health care and social services
  • in educational contexts
  • in regards to Jobs and Employment
  • in cultural and social contexts
Are you a Care Provider? A Social Worker? A Researcher?

Do you want to help by sharing the information on elderly intersex persons with your colleagues and institutions? Why not share the link to this campaign page now!

Isolation

Not just since the covid-pandemic has isolation and loneliness been an issue for intersex people in general, and even more so for older intersex persons.

“Some older LGBTI people experience social exclusion and invisibility and cannot rely on the same family support as other older people. This raises specific challenges related to whether long-term care is inclusive of older LGBTI people needs.”

AGE Platform Europe & ILGA-Europe

Joint policy paper: Equality for older lesbian, gay, bisexual, trans and intersex people in Europe, 2012

“At the age of 30 I left my husband, I’ve never had a partner since, because I’m frightened to let anyone near me. And I’ve lost out. I’m a loving person and I don’t like being on my own”

Jeanette, 71

BBC News Magazine, 2017

For those who have not yet found refuge in the growing intersex community, becoming older often means to cope and to live with the ongoing challenges as an intersex person in complete isolation, without a support network, family or kinship, and without adequate language to articulate their experiences in an affirmative way, due to pathologization, stigma, secrecy, misinformation and shame. 

“These traumas, and their state sanction and normalisation through the medicalisation of [Variations of Sex Characteristics], created the conditions for ethical and ontological manifestations of loneliness. […] intersex mistreatment and loneliness must be understood as ‘a structural and systemic issue that requires a state response’ and social change”

Charlotte Jones

The harms of medicalisation: intersex, loneliness and abandonment, Feminist Theory 2022, Vol. 23(1) 39–60

Some might be part of the LGBTIQA+ community, but others might not and tried to fit into a heteronormative and binary system with its strictly set boundaries of belonging.

“Research also confirms that a lifetime of stigma, misgendering, and non-consented procedures is leading to worse physical and mental health, poorer access to health and social care. It can also deter LGBTI people from seeking medical care, leading to later entry into medical systems or no entry at all.”

AGE Platform Europe

AGE Barometer 2020: Older LGBTI People

“I’m an elderly guy, unmarried, outside the mainstream, and I am still read as gay. That’s what is going to happen in my lifetime, I’m gonna be seen as a repressed gay person.”

Peter Trinkl

Intersexions (2012); documentary, video

Mental Health

The life-long consequences of IGM and other unconsented medical treatments that happened earlier in life include trauma, shame, secrecy, discrimination and a lack of awareness, directly impacting the well-being and mental health of intersex persons of all ages.

In the Virtual Expert Panel on the Mental Health of Intersex People, held on the World Mental Health Day Oct. 10th 2022 by GATE and ILGA World [see embedded video below], intersex researchers and activists share findings of recent research on the mental health of intersex persons, including seniors, that requires urgent attention.

“Intersex mental health needs an end to intersex genital mutilation, education and awareness. It points to an urgent need for awareness and education for intersex people themselves, for the parents, for the public, and also for the medical professionals.”

Adeline Berry, Intersex Researcher and Activist

University of Huddersfield, UK; Intersex Ireland

“The mental health of intersex people needs to start with an awareness that our mental health is determined by a lot more than just our genitals; Action that promotes our resilience and access to resources”

Katharine Dalke, Intersex Researcher

Penn State College, U.S.A.

Impact of the Covid-19 pandemic on Mental Health

Also, the OII Europe Covid-19 Survey from 2020 showed, that the respondents to the survey considered the negative impact of the Covid- 19 pandemic on their mental health and their well-being to be the most difficult and pressing issue.

62% of all respondents reported a worsening of their mental health. Of all intersex respondents 11% reported a strong worsening and 8% very strong worsening. Another 43% reported some or a medium worsening. 21% of all intersex respondents are experiencing a relapse of their previous mental health issues due to the pandemic.

Needs of older intersex people

Special care needs (*trigger-warning*)

Up to the 1990’s several of the common medical interventions on intersex persons were extremely harmful, including the partial or complete amputation of the clitoris/phallus. These mutilations and other unconsented medical interventions have severely negative long-term effects on the well-being and on both the physical and mental health of the individual. In a context of elderly care facilities, these specific issues need to be known by care personnel when working with intersex seniors. 

“Professionals need to be trained across the board to deal sensitively and expertly with the bodies of trans* and intersex people. Because their own bodies do not conform to societal expectations, trans* and inter* persons develop a fear of being treated as “spectacular special creations” (interviews). Therefore, it is important that nurses have developed concrete ideas about the broad diversity of human bodies and professional ways of dealing with non-normative bodies.”

Schönpflug, K.; Eberhardt

Special care needs of LGBTQI+ persons – Senior*innen WGs für LGBTQI+ Personen Bedarfsevaluation Wien, IHS, (2021). (translation by OII Europe)
Older Intersex persons can have long-term health issues

due to

  • experimental treatments that lack research, such as hormone replacement therapy over many decades due to the removal of hormone-producing organs early in life,
  • the lack of access to health care that takes into account the very individual needs of each intersex persons specific circumstances, 
  • scar tissue from past surgeries that requires maintenance and care,  
  • the continuous need for reparative surgeries due to complications from initially unnecessary non-vital medical treatments,
  • stress-related health impairments acquired from experiencing life-long alienation, discrimination, trauma etc.

“Older intersex people have systematically been excluded from research on intersex from a medical perspective, arguing that what happened was so long ago and medical practices have changed. There are no long-term studies of the effects of medical interventions on intersex people”

NNID Foundation

“The human rights of older intersex people”, Submission (2021) to the thematic report on the human rights of older women – of the United Nations Independent Expert on the enjoyment of all human rights by older persons

“Older LGBTI people, and in particular, older trans and intersex persons, may have specific health needs and may face ongoing stigmatisation in the field of healthcare.”

AGE Platform Europe & ILGA-Europe

Joint policy paper: Equality for older lesbian, gay, bisexual, trans and intersex people in Europe, 2012

A non-comprehensive list of identified needs and solutions:

  • More research specific on intersex ageing
  • More education and awareness on this topic (including on the life-long consequences that survivors of IGM and other harmful practices face in their lifetime)
  • Enabling intersex community spaces for elderly and disabled intersex persons to participate, to find places of belonging and for sharing
  • Funding (for specific projects, research, trainings, infrastructures, intersex community spaces, programs to service elderly and disabled intersex persons)
  • Visibility of intersex seniors in society
  • Knowledgeable services and care facilities that are educated and have respectful knowledgeable staff and / or volunteers [see also the good practice example “Quality Seal Lebensort Vielfalt®”]
  • Training & sensitizing on intersex realities of workers in care facilities
  • Services such as visiting programs, everyday assistants, community services (incl. funding for such programs and services):
    • community-based volunteers visiting elderly community members to go for a walk, having a chat, have a cup of coffee or tea (community visiting programs)
    • visiting seniors services with adequate training on intersex specifics or volunteers that are intersex themselves
    • Visiting services and “everyday assistants” to provide help in daily chores such as cleaning, shopping, laundry

“I’m worried for the future on several fronts. I worry about the cost of living increases and facing employment discrimination as well as persecution and violence from the growing far-right. As I get older my medical needs increase and I’m often met with baffled medical professionals.”

Intersex Activist, Ireland

Coping mechanisms

Early findings of current research shows that many older intersex persons practice artistic expressions as a form of coping mechanism and strategies to maintain well-being and improving their mental health.

“Every single person I spoke to used the arts in some way to survive, to thrive and to express themselves, was writing a book or was a published novelists or a musician, or in theater, or painted; I think it is worth taking a look at what actually does work for us and also developing the things that we really really need that currently do not exist.”

Adeline Berry

Intersex Activist, Artist and Researcher

Good Practices, solutions & obstacles

While very few good practice examples or implemented solutions do exist, it also seems that obstacles can occur which might indicate a lack of interest or ignorance towards the needs of ageing intersex persons, exacerbated by demanding challenges for elderly care in general.

A currently ongoing pan-European research project “Older intersex people” at the University of Huddersfield, UK within the INIA – Intersex: New Interdiciplinary Approaches Project.

“This project aims to reveal the issues faced by older (50+) intersex people by exploring their lived experiences and life histories.
In taking a pan-European approach, the project will enable identification of the specific concerns of this highly invisible group.”

In Germany, a first expertise on ageing intersex persons has been published for the city state of Berlin in 2022. It highlights a severe lack of research and needs assessments in this field. The document includes an overview of the current state of research, interviews with intersex persons and affiliates of care facilities, as well as expectations towards nursing institutions.

The Quality Seal of the Berlin-based Lebensort Vielfalt® (Habitat Diversity) is a qualification program for inpatient care facilities and outpatient care services, day care centers, hospices and hospitals that want to create conditions in terms of structure, organizational policy and personnel to include sexual and gender minorities.

It includes an online quality check assessment, training, and recurring assessments for care facilities.

“In summary, it can be said that the topic of intersex and ageing is still very little researched and needs assessments are still highly required in order to be able to cast all areas of aging, including also for intersex people, into a secure form.

This expertise aims to raise possible further research questions in this area and to pointing towards first, very urgently needed changes that need to be made within the daily-care-and-support sectors with its recommendations for action.”

Luan Pertl, in collaboration with Dr. Karin Schönpflug

Inter* und Alter(n) – erste Handlungsempfehlungen für Berlin, Schwulenberatung Berlin, Germany 2022

“Attempts to address the issues we face on a national level are met with gaslighting from the government, which tells me there is no willingness to listen or improve things for us. On the upside I’m grateful for our growing national and international intersex community and all of the love and understanding that brings.”

Intersex Activist, Ireland

This Campaign

With this years Intersex Awareness Weeks Campaign we want to take into view the situation of elderly intersex persons and raise awareness about their very specific challenges and needs. These apply also to the veterans of our community, the Survivors and Elders and often Pioneers of our intersex human rights movement and on whose shoulders we stand today. 

Hashtags for Social:

#

#ElderlyIntersex
#IntersexSeniors
#IntersexAgeing
#YellowPurpleSilver

Our campaign is aiming to raise awareness about elderly intersex persons. Older intersex people face very specific challenges and needs, and while there is still very little knowledge and research available on this particular topic, this campaign wants to highlight some of the few existing findings on senior intersex folks, as well as creating a platform for community-based knowledge.

We promote and invite elderly intersex community members to become advocates in the fight for equality and dignity for ageing intersex people.

For the upcoming year we are planning a publication project with testimonials and art by elderly intersex persons. The corresponding call for participation and further details will follow.  

Raising awareness on elderly intersex persons and the challenges they face
Highlight a selection of existing findings and research
Creating a platform for elderly intersex community members

Do you want to support us and share our campaign in your networks and social media? Great, we prepared a communication kit for you that you can find here:

UPCOMING:
Yellow. Purple. Silver.

Would you be interested in sharing your story, your art, your thoughts or life experiences with us and with the world?

For 2023 we plan a call for contributions for an upcoming publication with voices and art of the elders of the intersex community

If you are intersex and 50 years or older, please consider to join this project. Soon we will post more infos here.

Sources (excerpt)

Footnotes

  1. See “Intersex ageing: a new population” in J.R. Latham and M. Morgan Holmes, in: The Sexual Rights of Older People: Theory, Policy and Practice (pp.84-96) Chapter 7: INTERSEX AGEING AND (SEXUAL) RIGHTS, Publisher: RoutledgeEditors: Sharron Hinchliff & Catherine Barrett, 2017, pp.87ff
  2. European Union Agency for Fundamental Rights (FRA) LGBTI Survey Data Explorer & EU-LGBTI II (2019) Survey Report “A long way to go for LGBTI equality” ISBN 978-92-9474-843-0 • doi:10.2811/667747 • TK-04-20-044-EN-N

Are you a Care Provider? A Social Worker? A Researcher?

Do you want to help by sharing the information on elderly intersex persons with your colleagues and institutions? Why not share the link to this campaign page now!

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