Steinunn Ása Þorvaldsdóttir Praha 2016 Becoming a woman Steinunn Ása Þorvaldsdóttir Praha 2016

I am Steinunn My name is Steinunn and I come from Iceland I went to a special school from 6 to 15 years old After graduation I went to a four year high school for disabled and non-disabled students I lived in Italy for few years with my parents And in 2011 I went to the University of Iceland and graduated in 2013

Self-advocacy is a big part of my life After graduation from the university I opened a café with my friends in Reykjavík Our aim was to get a job that we liked and also to make disability visible in the city The café was popular but the city of Reykjavík did not want to support this project and the café closed I am also work on a TV show which is on the National TV All members of the cast are disabled people and we talk about all kind of issues – disabled and not disabled issues We have been nominated many times for TV awards

I work in city hall I work in city hall My job is with the department of human rights I take part in many committees and some are accessible and some are not I think it is very important for city hall to have disabled people as staff members This way I hope I can influence how people view disability

Sexuality I am here today to share my story My story of becoming a woman Sexuality to me is sometimes complicated It is not because I am not able to understand It is because nobody told about it

Sex education I did not get any sex education in school My parents did not talk about sex or sexuality to me I tried to ask them a lot about it But they were shy This means that today when I am a grown woman I sometimes feel confused I talked to one of my teachers from school She said that the teachers were shy and did not have any teaching material I also talked to young disabled women Some had been in special schools and some in regular schools Some of them had sex education and felt they were informed Others did not get any sex education I think sex and disabled women is a taboo in Iceland

Menstruation When you have not had much sex education menstruation can be a frightening thing I talked to a group of disabled women Those who had not had any sex education were scared when they had their first period One woman thought she was dying That is why it is so important that we get information not just about our rights but also about our bodies There is often pain with menstruation Women who have difficulties to talk or explain their feelings or pain need to get support and understanding If menstruation is something most women experience why is it so difficult to talk about it with disabled women When parents and support staff do not want to talk about these things with us we feel really bad It is also very hurtful when parents and support staff dismiss our feelings They may understand what is happening to their bodies But if nobody wants to talk to us about our bodies. We do not know what is happening If we do not get education. How are we supposed to learn?

Gynecologists I talked to 7 young disabled women And only four of them had been to a gynecologist All of them agreed that it is a scary thing to go for your first visit Most of them had been there with their mothers I went for the first time few months ago My parents had never talked about this with me But decided I should go I talked to a good friend of mine She booked the appointment and went with me Everyone at the doctors office were very nice I was very scared But having my friend was important The doctor was very nice and explained carefully what was about to happen There was no rush I got a lot of time And she explained everything to me before I had my examination My friend held my hand the whole time Research in Iceland has shown that disabled women often fear going to the gynecologists and also others do not have the support system to make the appointments But having access to healthcare is our right But we also have to know that we are supposed to go to the doctor And if we have not had any sex education And if nobody wants to talk about these issues with us Then we might not go

Having sex Well if menstruation is a taboo Then sex is of course also taboo Research in Iceland tells us that disabled people are often denied to have girlfriends and boyfriends Parent think we do not understand what it means to have a boyfriend Many are afraid that we will become pregnant That is why it is kind of funny that they do not want us to have sex education I think with good sex education we would learn like other people how to prevent pregnancy That we need to use condoms It is important to talk about sex with all people Disabled people and non-disabled people should be allowed to have sex if they want to But of course both have agree And some people disabled and non-disabled do not want to have sex That is OK too

Falling in love If disabled people are denied to have girlfriends and boyfriends They are being denied of the happiness of falling in love and even get married People who use wheelchairs can fall in love People who are blind can fall in love Disabled people are people And people fall in love And I have fallen in love too It is nothing to be afraid of And parents and support staff need to understand that

Disability is not the third sex Some people do not think about disabled people as sexual I do not agree I am not the third sex or asexual I am a woman I am a strong woman I can be gay I can be straight I can be masculine I can be feminine But the young women who I spoke to before coming to Prag told me that people do not expect them to want to be sexual Nobody asks them if they have a boyfriend or a girlfriend So it is not enough to teach us about sexuality Everybody else needs to know Our parents and support staff needs to understand and respect us as sexual beings

Tabú Group That is why self-advocacy is important I have participated in advocacy with a group of young disabled women This group is called Tabú We have been publicly advocating for disability rights But we have also been supporting each other This is very important Some of them had similar experience It felt good to hear their point of view They also listen to me They understand me And they give me courage

Getting support I have told you about some difficulties I have told you about lack of sex education I have told you about lack of understanding But I have also told you about good things How I have had good support I think I am able to do almost anything if I have good support I am learning about my body and about my feelings with support from friends I think it is very important to be able to talk to other women about these issues But if we are supposed to do that we might need support The person supporting us has to understand that we are adults The person might need to give us information But we would decide what to talk about The person supporting us might need to organize our meetings But we are supposed to be in control Eiríkur þú hjálpar okkur kannski með þessa glæru

Thank you Thank you very much