Antoinette Vebel Pharao
Can you have sex? Can you masturbate yourself? Can you feel everything? Are your helpers with you all the time? Do your assistants know you're having sex?
This is just a selection of the prejudices and questions I have encountered in relation to having a physical disability and having a sex life at the same time.
My name is Antoniett, I am 33 years old and in an electric wheelchair. I was diagnosed with muscular dystrophy when I was 11 years old and I became permanently in a wheelchair when I was 16 years old. Since I was 18, I have needed help 24 hours a day. I need help with everything from cooking, going to the toilet, taking a shower and getting into bed. It has affected my relationship with myself, my body and my sexuality, as well as my relationship with sex both with myself and others. It is a slightly vulnerable and borderline writing for me. But it is incredibly important that we focus on the taboos that exist within sexuality and disability. So thanks for reading along.
When you have a disability, it can be very difficult to find and deal with your sexuality. Especially when you have help 24 hours a day, you don't have a single moment alone.
You will be touched daily by professional assistants, for everything from toilet visits to bathing and dressing and undressing. One's body becomes a tool and a task for others to take care of. Therefore, I told myself that it was easier not to have or relate to having a sexuality. I just shut myself down and my body. Because my body had to be clean and I had to be dried properly in the toilet, and of course I must not turn it on.
The taboo conversation
Fortunately, a huge game changer happened when I started university at the age of 24. I made three good, and very open, friends who talked a lot about sex and the body. At one point they let the arrow point at me, and I felt like a 12-year-old inside. I felt uncomfortable, and in no way wanted to talk about sex or sexuality, because I don't want to deal with it. I didn't feel my body was worthy of pleasure and I thought it was ugly. I tried to brush it off and answer briefly, but they were persistent. Questions like: Have you ever had a vibrator? Have you had sex with yourself or touched yourself? Have you had sex with others? They kept asking questions. It was exactly what I needed. I needed friends who weren't touchy. Friends who dared to ask about what hurt a little, but in a loving and caring way. They didn't just talk to me about it either. They took me to a sex fair and asked me to buy my first vibrator.
Sex with myself
The sex fair, and the purchase of my first vibrator, was the start of sex with myself. But unfortunately it's not just me who knows when I use my vibrator. Fortunately, I have found one that I can use myself. But there is always a helper who knows, as they both have to find it and pack it away. It was - and still is - extremely transgressive that I can't just have it to myself when I want to use my vibrator.
It requires a great deal of self-confidence and self-esteem to always have to involve others in your sex life. Fortunately, it has gotten easier over the years because I have convinced myself that I have just as much right to pleasure, orgasm, and explore myself sexually as anyone else. I have the same needs as everyone else, but not the same opportunities and conditions. I must try to live out my needs, in the best possible way and with the help that is necessary - even if it crosses the line.
Sex with others
It's one thing to have to explore yourself and have sex with yourself. It is quite another to invite others into the game; to have sex with others. For many years I have considered whether I should pay myself to have a sexual experience with another human being. But every time the thought has arisen, I have come to the conclusion that I simply could not. Then I'd rather do without. So 30 years had to pass before I had my sexual debut with another human being. I so wish that as a 20-year-old I had the same self-confidence and self-esteem about myself, my body and sexuality as I have today as a 33-year-old.
That being said, I haven't done anything I regret. I have been with you all the way, followed my gut feeling and set limits. I don't think I would have been able to do that in the same way when I was 20 years old. It takes a lot of courage to have to talk to my assistants about the fact that I have a need for sex and how they should relate to the fact that I have a sex partner.
It's no secret that it can already be difficult to have disability helpers 24/7 and get help with everything. It just became even more difficult when I decided I wanted to have sex and live out my sexuality with others. One thing is that the helper knows it's going on and sits in a room with headphones on in the meantime. Another thing is having to tell the date or sex partner I have that there will also be a helper present in the apartment - always. It has scared off a lot of Tinder dates before it even became a date.
When I write to them that I have a helper 24/7, they delete our match, write that they are "just looking for friendship" or come up with other excuses. Some just stop writing. It's so hard every time it happens. Because it is not about me as a person, but about a condition I live with and which I cannot change. I know that it demands an incredible amount from the person who chooses to date me. My disability will not go away and I will always need help.
Fortunately, not everyone has been scared away. They've had their misgivings, but they've given it a try. Some I have dated for almost a year, others only a few months. But it has succeeded. That's what I try to hold on to.
What aids can I get?
In relation to aids for new sex positions, when you have physical difficulty moving your body, there is unfortunately not much help available. I have had contact with various dealers of sex toys, but also with companies that develop and produce "ordinary aids", such as sails for a ceiling lift, elastic bands for training and the like. None of them know anything specific about sex and disability, or want to work in the field. It's a great pity, because I really liked e.g. to be able to use a vibrator adapted to my needs. I wanted a sling that was comfortable to have sex in, or a custom pillow or mattress that could make sex easier. But as long as no one talks about it, or wants to touch on that subject, it will not be easier to have sex, either with yourself or with others, when you have a physical disability.
It is a necessary conversation
Until now, I have used various groups and private conversations on social media where people with physical disabilities share their personal experiences. This is definitely some of the best help I have received. But I would like to be able to get professional help from an occupational therapist, a physiotherapist or similar. It should be a human right that you were offered guidance on what aids are available in relation to sex with yourself and others. Especially in relation to being able to get into different positions. I know it will be a cross-border conversation, both for the person with a physical disability and the therapist. It is a necessary conversation and my dream is that there are professionals you can be referred to who can guide you in the field of sex and disability. My dream is also that there are developers and manufacturers who will take the problem seriously and develop more aids in the sexual area.
To end where I began:
Yes, I can have sex, but it requires extra imagination, patience and equipment.
Yes, I can masturbate myself, with the right vibrator.
I can feel everything.
My assistants are with me all the time and they know very well that I have a sex life.
I hope this post has given you some information, or perhaps made you more curious. If you have more questions, please ask. It is so important that we dare to be curious and open to each other. You can find me on Instagram, or ask questions through Klub Venus.
