Concerned mother calls for taboo against sex and persons with disability to end
MARIELLA WIRTH is the mother of a 28-yearold man who suffers from Down syndrome - an intellectual disability. Recently, the topic of sex and persons with disability was raised by Malta’s commissioner for the rights of persons with disability. As a mother
Wirth is quick to say that she is one of the lucky ones, as her son is in a relationship with a 25-year-old woman who also suffers from Down syndrome.
She described how her wish, first and foremost, is for there to be sexual education available in Malta which deals with people with disabilities.
“It is pointless for everybody to give their opinion. Unless you are living in the situation, unless you are living with somebody who suffers from a disability, you will not understand,”
Xarabank programme
Wirth attended a conference organised by the Commission for the Rights of Persons with Disability, entitled Breaking the silence: sexuality, intimate relationships and disability. The Commissioner for the Rights of Persons with Disability, Oliver Scicluna, addressed the event and called for the taboo against the subject of sexuality and disability to be broken.
She also followed a programme on the popular national television show Xarabank, where a panel of speakers inclusive of Scicluna discussed the issue.
“I felt sorry for Oliver who was on a panel surrounded by people against the idea of sex workers, who I do not think we should be calling sex workers in any case.”
In many European countries, clinics are available where the line between health-care and sexwork are somewhat blurred. These clinics provide information and guidance about sex, sexual health and relationships. In addition, there are also trained sex workers who provide pleasure in various ways to a person with disability who cannot make due on their own. In serious overseas clinics, people with disabilities are looked after by trained professionals in a friendly and nonjudgmental way.
The argument follows that sex is a very natural desire and oftentimes persons with certain types of disability are deprived from this, resulting in frustration and anger for many.
The programme was discussing the idea of a sex worker to service those who are unable to acquire sexual gratification themselves.
Wirth passionately and with conviction argued that it is unkind to simply label such sex workers as prostitutes.
“Some disability requires serious knowledge on how to deal with the person. People argue that if it is really so bad the disabled person may seek out a prostitute. What if the person with disability is wheel-chair bound, or paralysed from the neck down, or suffers from a number of conditions that actually requires the ‘sex therapist’ to know what they are doing in order for the act to be safe and enjoyable?”
Wirth stressed that people living with a disability have the right to explore and express their gender and sexuality and have relationships based on consent, respect and safety. In addition, she remarked that they must also be able to learn lessons from life’s experience with support where required, and that they should have the right to control decisions which affect their sexual health and relationships.
“When my child finished from the Child Development Assessment Unit – at around 16 – and the workers there felt that they had taught him everything they could, I asked if they could direct me to some sort of sex therapist who could provide information and support. I was told that none exist in Malta.”
Wirth realised that the issue was something that had to be acknowledged and handled in a supportive way when her son began to mature sexually and certain curiosities began to arise. Her son’s experience made her aware of the suffering that people with a disability may endure when they are deprived, for one reason or another, of experiencing sexual activity.
“The way in which sex workers were being spoken of, as glorified prostitutes – I think it was not the right thing to say. What we need in Malta are sex clinics. People with disability need to be able to communicate openly about rights and responsibilities in relation to private body parts, sexual feelings and relationships. Clinics should have an adjustable lifting bed... this is what we are talking about and that is why I got so frustrated when I heard Dr Anna Borg on Xarabank say there should be a dating site for persons with disability.
“Can you imagine certain people with severe disability using a site? The suggesting still leaves out portions of people who are unable to use such a site. What if these two people have CP? How will they have sex? Can anyone explain this to me?
“These people cannot empathise, and it does not occur to them how bad a disability can be. I am a very lucky person as people with Down Syndrome
are capable of walking, talking and expressing themselves. Some people have it so much harder!
“During the show it was also said that it is better for people with a disability to form a relationship with a person. Imagine what it is like for people who are wheel-chair bound. I mean honestly, how easy is it for them in Malta to go out and about daily? It gets me so nervous, why can’t people understand that me and you get into our cars and go from A to B, whereas these people are wheelchair bound, dependant on other people can’t do that? None of this is easy.”
Sex as a taboo
In Malta, sex is not the most openly discussed issue and many people have conservative attitudes towards it. This makes approaching this issue all the more difficult. Acknowledging this, Wirth said: “Sex is already a taboo in Malta, and I say to myself, people with disability already have extra hurdles in this already-difficult world we live in, so why should they be sexually frustrated on top of that?
“I do not know if the Church will get into this issue or not. I am a Roman Catholic and take my religion very seriously, but I do not think that the Church should help in causing more of a taboo by saying it is against their religion.
“It boils down to accepting that everybody has sexual desires. Concerns were raised, on the show, that these sex workers or therapists are being exploited and it is often vulnerable people who enter this line of work. If there were professional sex clinics like we find overseas, they would be highly regulated and it would be a safe space for all.”
Sexuality and persons with disabilities
In that vacuum of years where our children are floating around and not knowing what is going on in their lives, between finishing school and figuring out the next step, they should have access to sexual education, Wirth stressed.
“They would be able to visit this clinic and learn their boundaries, how to respect other people, general sexual education and all the things you need to know.”
She spoke of how the sexual education was provided at her son’s secondary school, and that it was good for him to listen to what the other boys in his class have questions about. This had really helped him a lot, she said.