We all have a way of presenting ourselves to the world, some people call that our sexuality, it could be the clothes we wear, the makeup we put on, or the way we communicate.
It doesn’t necessarily mean being in a relationship, or engaging an a particular act, it is how we think about ourselves. That can include our gender identity as well as our sexuality and whether or not we choose to become parents.
If someone makes a decision or choice about how to live their life and they’ve made that choice for themselves, if you choose not to be a parent, not to be in a relationship, not to be a sexual being, and you’ve made that choice because you feel it is something that is right for you and gives you the quality of life that you want, then that is wonderful.
Discussions like this need to take place because historically choices around disabled peoples sexuality have been denied to many, because they are very private, and personal, and it is harder to fight for these type of rights then rights around a public issue’s, for example housing or transport or education.
Historically disabled people have been considered passive, dependent, recipients of care, eternal children, to be fixed, or hidden away in the family home, involuntarily incarcerated in various facilities or institutions, considered asexual, sexual desires were considered problems to be managed and disabled women were considered most vulnerable.
These varied and widespread misconceptions have had a detrimental impact on disabled people access to reproductive justice and fulfilment and it is important to acknowledge historical treatment of disabled people to understand why it is essential to discuss these topics and fight for rights in these areas.
Selina told us that she is involved in the work around assisted human reproduction legislation, to ensure that when the legislation is finalised that it won’t bar disabled people from accessing the services they need.
Consider people who have been institutionalised. Their rights as a person not considered, not being stimulated, needs are not being met, historically in Ireland sex was a difficult subject, women had to travel north for the pill, and to purchase condoms. Even in prisons, people are entitled to their conjugal rights, disabled people in institutions do not have these rights.
Historically disabled people weren’t expected to have a desire to be in relationships, to express their sexuality or to want to become parents and were often actively denied these choices. Things are getting a bit better, there is more talk about choice, control and responsibility, we have different legislation giving the right to found a family, access to health services, education, etc and our assisted decision making legislation.
There is a project taking place in the Disability Law Centre in Galway University of Ireland. These people are developing a toolkit that will help health services to provide e.g. gynaecology services, family planning services in a more accessible way – see – www.nuigalway.ie/centre-disability-law-policy.
Because it’s a personal/private issue it can be hard to talk about it in society or in groups which makes it harder to fight for these rights because some people don’t feel comfortable opening up about their sexuality.
A lot of people with intellectual impairments don’t realise they have a right to express themselves in a way that makes them feel good/attractive. Service providers, and carers, don’t support those with intellectual impairments to express themselves in a way that make them feel attractive, they are not given the confidence or the help to look their best in way that they want to.
When people hear the word ‘sexuality’, they usually jump to the word ‘sex’ and that holds back these types of discussions, your sexuality covers the whole range of who you are and not just the physical sex act.
Disabled people are often the last people in the hierarchy to have their rights met.
Australia is very forward thinking in the area of rights around sexuality for disabled persons and particularly for people with intellectual impairments. They truly believe that people need to be connected to somebody, whether its sexually or an internet friendship. They have done a lot of work around what does sexuality mean, it can mean different things to different people.
Disabled people have to fight for so much – education, housing, transport, personal assistant services, that sexuality is not on the priority list, its way down the list and disabled people are tired of fighting for their rights for everything else.
As public rights become more prevalent, housing, education, etc, it means that disabled people are getting out into the world, the more disabled people can interact with the world around them the more their ‘private’ rights become possible to achieve.
Tom Shakespeare – Sexuality and Disability (video)
When it comes to disabled people and sexuality, we often hear that disabled people are asexual or have no interest in sex – that’s nonsense. Most disabled people are having relationships, having sex, just like everyone else.
Four categories of disabled people mentioned in video
- Some people are born with a disability, some face barriers, particularly people with an intellectual impairment, usually to do with empowerment, to do with knowledge, other people’s attitudes, to do with the fact that their carers/parents/care-homes, think that they shouldn’t be having sex. So, they need empowerment, information, support, protection (because they are vulnerable to abuse)
- People born with a disability who don’t have intellectual or cognitive issues, but they have physical or communication difficulties. A lot of these people have had relationships, sex, marriage, families, like everyone else. Some people face significant barriers, often those with complex impairments, profound impairments and particularly those with communication, so it may be difficult for them to form relationships.
- People who become disabled, though an injury for example. Often, they have been having sex, are they going to continue to have sex? Sometimes their relationships break up, sometimes they start new relationships, therefore rehabilitation should include information about sex. Help people to understand, yes, they can, they may have to have it differently, but it can still be good.
- People who are disabled through aging. Older people have sex, and we need to support them, we need sex positive images, help them to deal with any physical changes that happen with aging. We need to confront the issue of dementia, consider questions of capacity and consent.
Whichever group of disabled people, whatever age, we need to have the conversation, not start from “it’s a problem”.
There are various resources to support people with sex – sex education, sex therapy or surrogacy, counselling, psychotherapy, sex work in jurisdictions which allow that, sexual facilitation – helping somebody prepare for/get ready for sexual intercourse but not actually have sex with them. We need to make sure we have services that are set up to meet those needs as they occur to enable people to have the same sort of sexual intimacy, relationships, family, that other people have – see – www.youtube.com – Disability and Sexuality (SUB ITA) – Tom Shakespeare to watch video.
Historical / Legislative Context
Medical Model
‘A medical tragedy model predominates, whereby disabled people are defined by deficit, and sexuality is either not a problem because it is not an issue, or is an issue, because it is seen as a problem.’ (Shakespeare, Gillespie-Sells and Davies, 1996:3)
- Focus on ‘fixing people’
- Infantilisation – seeing disabled people as an internal child, particularly in relation to people with an intellectual impairment. A disabled person cared for in the family home, supported by parents/family well into adulthood is often seen as eternally a child. When you think about children you don’t think about their sexuality or of the child as a sexual being, this thinking has been transferred onto the disabled adult.
- Strong religious influence – particularly in predominantly Catholic countries, like Ireland, essential services such as residential institutions or hospitals, would have been provided by religious communities, therefore their religious ethos would have influenced how the services were delivered. Even today we can see that in the debate around the new national maternity hospital. Discussions are being held around what the future influence of the religious community would be within this hospital, given the grounds it is being built on.
Legislation relation to sexuality:
- UN Standard Rules for the Equalisation of Opportunities for People with Disabilities 1994
- A Strategy for Equality 1996 – 402 recommendations on what needed to happen in Ireland in order to give disabled people rights in a wide range of areas in their lives
- Equal Status Legislation 2000-2018
- Disability Act 2005
- Assisted Decision Making (Capacity) Act 2015 – to be enacted soon
- Irish Sign Language Act 2017 – until this act was enacted deaf people didn’t have the right to have an interpreter provided. E.g., a deaf woman didn’t have the right to have a female interpreter accompany hr to medical appointments
- UNCRPD 2006 – Article 6 (Women with disabilities), Article 23 (Respect for home and the family), Article 25 (Health) – right to ‘found a family’ – the right to have a family/build a family/create a family, if you need support to build a family in whatever way is needed. Also, relevant here – assisted reproduction legislation going through government at the moment. Currently, if you want to have a child and you need help because of medical reasons none of the services/assistance is guided/governed/regulated protected by law, there would be concerns around what rights it will give to disabled people to access those services in a truly equal way.
ILMI is involved in this; ILMI have joined a coalition to try to ensure the legislation is relevant to disabled people.
Feedback – breakout rooms:
What is Sexual Citizenship?
- Equal opportunities to have a sexual life, disabled people should be able to have the discussion without embarrassment or feeling awkward. e.g., in The Netherlands there is a right to access a sex worker if you so wish
- Every person has sexual desires, education should be provided from a young age
- Sexuality is about how you express yourself, what you do to make yourself feel good
- If you can’t love yourself, it will be difficult to love others.
- Belonging, choosing your sexuality, legality, citizenship, having the right to choose and express yourself as you wish, choice and control
- Often white men are involved in the decision making from the medicine side of things, women and those from ethnic minorities don’t have the same rights, menopause, women’s care is also an issue.
Sexual Citizenship – The goal is a society in which diverse people can take responsibility for their own sexual lives.
What does Reproductive Justice include? Can disabled people adopt? One never hears about disabled people adopting a child. What are the rules? Are they the same or are they different? What are their rights in relation to IVF? Access to fertility clinics? Can disabled people foster children?
Reproductive Justice – the ability to make decisions and have choices respected, around becoming a parent or not. This includes fertility, contraception – including assisted human reproduction, abortion, pregnancy, birth and parenting – including fostering and adoption.
The reproductive Justice project has identified discrimination for disabled people on these issues in many forms. These include:
- Physical infrastructure (buildings, consulting rooms, clinics) where reproductive health and parenting services are delivered being inaccessible
- Historic and contemporary use of long-term contraceptives without informed consent. Common among women with intellectual impairments
- Ableist attitudes across assisted human reproduction, maternity, and parenting service staff. Non-disabled people presuming disabled people do want to or have no interest in these services or are incapable of being parent/expressing sexuality
- A lack of accessible information across all stages of reproductive decision making. No plain English, no braille, etc…
- Gap in knowledge from health professionals about the support needs of disabled people accessing reproductive services. Professionals not receiving disability equality training. All disabled people are individuals, even though two people may have the same impairment it affects them differently. All interact with the world in our own way
- Increased interventions and monitoring of disabled parents which is disproportionate to non-disabled parents
- Lack of uniformity about the use and quality of Parental Capacity Assessments – assessments that are carried out on a pregnant woman who is disabled, to ascertain if she is capable of being a mother. At the moment the way these assessments are being carried out is making it very difficult for disabled people to pass them. It has been raised with TUSLA who carry out these assessments
- There is a gap in data about the provision of reproductive services to disabled people, particularly with the new framework for abortion services. Disabled people know the information but there is not sufficient research or statistics to prove what is known
- The current legal capacity framework and delay in full realisation of the UNCRPD contributes to violations in this part of disabled people lives. This needs to be properly enacted.
What supports are available for a disabled person who may experience a sexual assault?
There is a lot of work going on in relation to these issues at the moment. A national strategy is being written, a number of disabled women are involved in this, who would be survivors of abuse and domestic violence – see – www.nwci.ie Disabled Women’s Group – Submission June 2020.pdf. A few years ago, Women’s Aid developed some written resources around issues affecting disabled women. The gardai have an initiative – Campus Watch, community gardai working with all university campus to deal with the issues of violence and sexual assault, issues faced by disabled people also being taken into account – see – www.garda.ie – Crime Prevention/Garda Campus Watch 2019.
There is not enough help or information around this issue, there is a need in general for some sort of peer support/mentoring. Ideal to have a team of disabled people to visit hospitals, rehabilitation settings to inform people of their rights and the services available to them.
Parental capacity – not lack of capacity but lack of services may be the problem. For example, a lady with physical and intellectual impairment was put in an apartment away from her home/familiar surroundings and left to mind her baby while being monitored to see if she was capable of parenting. Every new mum needs the support of her family and friends.
Disabled parents are being judged by people who don’t have a lived experience of disability, while they might do things differently, they still can do them well. Disabled parents might need some enabling aids or assistance device or a pa to help but that doesn’t mean they are not capable of being good parents, there are a lot of flaws in the way the parental capacity assessments are being carried out. This issue has been raised a lot by the team in Galway and highlighted with a number of different departments and also in government – see – Able or unable: how do professionals determine the parenting capacity of mothers with intellectual disabilities.
YOU-TUBE recommendations:
- “We Won’t Drop the Baby” – documentary by Lawrence Clarke and his wife after the birth of their second baby – see – www.youtube.com – Parents with Cerebral Palsy – Documentary
- Through the Looking Glass – American organisation, of and for disabled parents, have done huge amounts of research, links to adaptive parenting equipment – see – www.facingdisability.com – Through the looking glass