"We are all looking for closeness and love," says Raila Riikonen, a sex educator who has a business specialising in the sexuality of people with disabilities.

Disability and sex: Many myths still to break

Three voices. A common myth is that if you have a disability, you are not a sexual being. NGOs and activists are fighting wrong beliefs and educating service providers and people with disabilities themselves. Sexuality is a human right and can be expressed in a multitude of ways. Three experts from three countries share their views.

Sari Pohjola Photo Karoliina Knuuti

18.06.2019

Raila Riikonen, Finland:

“In my work, I try to improve the self-confidence of people with disabilities. Many are ashamed about sex, and they need courage. You need to be able to be yourself to make contact with others.

The first thing many of my clients ask is ‘how will I find a partner’? People with severe disabilities also ask for help with practical questions like how to masturbate or how to have sex with someone. We are all looking for closeness and love.

I did my sexual educator thesis about a sex survey Kynnys (a Finnish association promoting human rights of people with disabilities) that had been conducted on people with disabilities.

There were 60 respondents and about half of them said they could never ever ask for help with sex from their everyday assistant, because it would somehow debase the care work job. Half of them said they would definitely ask for help from their regular assistant whom they knew best.

The first assisted sex instructors have now been trained in Finland, but you can’t find them anywhere – there is no number to call. They are professionals working in the field who have acquired further education in this topic. It would be great if their services could be marketed, but Finnish laws prevent anything that is considered as selling sex.

So, people ask for their personal assistants to help them. The assistant can of course decline to do it or draw the line somewhere.

It’s not nice if you have to plan in advance the minute you are going to have your orgasm.

It would be great if there were personal assistants trained for this, and you could order one for instance for Friday evening.

On the other hand, I think a sex assistant should always be available, because you may get horny some other day too. The life of a person with a disability is very scheduled no matter what, so it’s not nice if you have to plan in advance the minute you are going to have your orgasm.

Doctors don’t ask us about our sex lives. If the topic is not discussed, it doesn’t exist. It’s already possible to ask for a voucher from the doctor to modify a dildo for example. But how many people will have courage to go to the assistive device workshop to ask for an extra handle for their dildo?

My message to healthcare professionals is that everyone should be treated first and foremost as an individual, not as a representative of certain type of disability. I hope that they can create an atmosphere where you can talk about sexuality.

It’s a great honour and sign of trust if a client asks for help with sex.

We have discussed with people who help the disabled with independent living how to react when a customer suddenly asks for help with sex. I advise them that it’s better to think and plan for it in advance. I always say that it’s a great honour and sign of trust if a client asks for help with sex. They have managed to create such a safe environment that the client has found the courage to ask for help.

The increase in accessible buildings has enabled more free movement for people with disabilities. When you see them in shopping centres, disability is normalised in people’s minds.

When there is more information, hopefully attitudes will change too. I think now that the rights of LGBT people are accepted, so people with disabilities could be next.

Our sexual needs should be seen as basic needs, not as something extra as they are nowadays.”

Raila Riikonen, Finland

  • A sex educator who has a business specialising in the sexuality of people with disabilities;
  • Gives lectures, advises health care and social services professionals and consults private clients;
  • President of the Finnish Neuromuscular Disorders Association and Vice-President of the SMA (’Spinal Muscular Atrophy’) Association of Finland;
  • Wheelchair user, lives in Helsinki, Finland.

Corinna Ortner, Austria:

“On paper, much progress has been made in sexual rights in Austria. Since 2015, there has been a new law according to which all organisations that provide living or assisted living for people with disabilities must have a strategy for how to deal with sexuality. At lil*, we help organisations to create this strategy.

In our experience, the employees at organisations assisting with independent living want to know more about sexuality, but they need resources and support. The topic of sexuality is never part of their professional education, so they ask us to provide further education on it. This, however, always depends on individuals who are willing to contribute to this topic and learn more.

The most common myth we encounter in our work is that people with disabilities have no sexuality at all. We often discuss this myth with the parents and employees of the organisations we work with. Sometimes adults are treated like children, because their sexuality is not recognised. Another big challenge is to correct the misinformation that when you talk about sexuality, then there will be sexuality.

Everyone should know that they have a right to decide for themselves whether they want to have sexuality and which way they want to have it.

People with disabilities are often told not to ask questions, so they eventually stop asking. In our workshops, we are really open and willing to discuss any topic the participants want to talk about, including taboos.

We talk about contraception, menstruation, relationship issues, boundaries, sexual diversity and how to give a consent to something. Understanding consent is important in the prevention of sexual violence.

Another very important topic is being a man or a woman. When we go to schools to give sex education, we never want to emphasise what a man or a woman should be like. Sometimes, however, a person with a disability just wants to know what it’s like to be “traditional” woman, in the way society defines it, to put on make-up and nice clothes. They never have the opportunity to discuss this.

Everyone should know that they have a right to decide for themselves whether they want to have sexuality and which way they want to have it. They should also know that if they are facing some difficulty, they have a right to ask about it.”

Corinna Ortner, Austria

  • Educational scientist with a focus on social pedagogy
  • Former student assistant at the Karl-Franzens-University Graz;
  • Founding member of lil*, an association which provides sex education. Lil* also arranges workshops for organisations that work in the disability services sector;
  • Project coordinator at Erasmus+ project #unexcited (www.sexeducationinfo.com, @about.sexeducation);
  • Lives in Graz, Austria.

Beyza Unal, Turkey:

“The atmosphere in Turkey is really conservative, and sexuality is not really talked about. People with disabilities are desexualised and not seen as sexual beings.

Lack of independent living is a barrier to sexuality. In Turkey we don’t have state support for personal assistants, so people with disabilities are forced to live with their families. You cannot have a sex life or romantic relationship if you live with your family. You can’t really go for a date with your mother, for example.

Also, if you are always with your parents or siblings, it affects how you are seen by other people – as a child and not as a sexual being.

You cannot have a sex life or romantic relationship if you live with your family.

When you are not seen as a sexual being, it affects other areas of life too. For example, when you go shopping and want to buy nice shoes, the sales person may say “Are you sure you want to buy these?”

In the healthcare system, there are problems with reproductive rights. There are both accessibility issues and attitude issues.

With regard to accessibility, many deaf people have to see doctors with their parents or children, because the hospital doesn’t have a sign language interpreter. A deaf woman is forced to give birth by C-section because there are no interpreters. Because healthcare professionals don’t think we have a sex life, they also think we cannot have children, or that we should have an abortion if pregnant.

In Turkey sex education is not well organised. It doesn’t cover information on LGBT, let alone on disabilities. Teachers ignore the fact that sexuality can be more than just intercourse between two able-bodied people. People are mainly trying to learn from each other, but that is true for everybody in Turkey.

My organisation is not a big organisation and some bigger disability organisations do exist in Turkey, but sexuality is not really on their agenda.

In Turkey sex education is not well organised. It doesn’t cover information on LGBT, let alone on disabilities.

In our training for women with disabilities, we discuss independent living and the gender perspective as well. One organisation has started something like a news agency where all the writers are women with disabilities. They have also covered sexuality.

Because we have this lack of understanding, we also experience a lot of violence including sexual violence, which is not reported. Many people with physical disabilities cannot go to a police station to ask for help because of barriers to transport or the lack of accessibility of the building itself. There are shelters, but they are not accessible, and the staff is not trained in the topic.

People also touch the bodies of women with disabilities because they don’t think a person with a disability is also a woman who has boundaries.

Women with disabilities are women too. Even many women’s organisations don’t realise that. Our association gives seminars and organises training for the staff of women’s organisations. Our goal is to mainstream the topic of disability in their agenda.

We also try to empower women with disabilities to be more active in promoting their own rights.”

Beyza Unal, Turkey

  • A clinical psychologist who works at a private clinic and as a part time lecturer at TED university;
  • For her PhD, she researched body image and the self-concept of people with physical disabilities;
  • An activist for the rights of people with disabilities, a board member of the Association of Women with Disabilities in Turkey, and a board member of the ENIL (European Network of Independent Living) Youth Network;
  • Wheelchair user, lives in Ankara, Turkey.

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