Moments of sexual development of young deafblind people and the involvement of the surrounding family and professionals.
In my daily life I work as Secretary General of the World Federation of the DeafBlind. I am deafblind myself, being born two months too early and getting too much oxideen in the intensive care. I am blind and hard of hearing. At the moment I am very much involved in the process of writing an international convention for the protection and promotion of the rights of persons with disabilities. One of the basic articles in this convention will hopefully be: "the right to life, survival and development". Every child and young person with a disability should have the right to develop on the same way, and equal to others. That means that also deafblind children and young people should have the right to develop their capacities, their full potential and on that way enjoy quality of life.
This sounds wonderful, but we all know, how different the development of deafblind children and young people is, compared to sighted and hearing ones and also how each deafblind child is different from another deafblind child. Each child is different and we need to pay a lot of attention to what is happening and how we can improve the quality of life of every individual. Of course, I know, when parents get children, they have their dreams. My child will grow up, find a partner, maybe get married and maybe we will become grant parents. It is difficult to imagine that when the child is deafblind, it seems to go a different way. A seeing and hearing child gets much more stimulations from outside already from the beginning. Many studies have shown how much a baby learns by looking at the parents and by listening to what is said. Babies develop also ways to express themselves. This is what many deafblind children are missing: stimulation and expression. You can say, that all our senses together are breathing in and out. That is a complicated system, where the whole body is involved, but breathing in and out becomes difficult when parts of the senses are missing. Other senses have to take over to keep alive. That happened otherwise to me, or did it?. When I was small I was more living in a dream world than in reality. I did not like, I was afraid of and could not follow reality. I dreamt in my day dreams that somebody warm and friendly, especially to me, came and took me, carried me away, to somewhere else, while she caressed me and told me that she wanted me. I say "she", it was often a she, but not necessarily. The persons changed during the years and when I started to read books, it was one of the personalities in the book. It could even be an animal, acting as a human being. The scene of the day dream was not long, but very intense. In fact it was the "moment", that I was hoping, expecting to happen every day. The only thing I arranged was... waiting. I was not able, could not, did not share it with anybody. If there had been a possibility at the institution of the blind where I grew up, already from I was 2 years old, to have a sauna, swimming pool, massage, all kind of relaxation and smells, I would have found out, that reality life is not so bad. Here family members and professionals can play an important role, doing this kind of stimulation activities without being so much personally involved. It has a life long effect!
An important step in the development of a child is to get to know your own body and how it feels from inside and when you touch it yourself and you learn to feel it using all your senses or (how different) when others touch it. This is important for the lives of every one. We were told that a body is something to be washed and to be very clean. Even when we learnt to wash ourselves, there was the eternal control if it was clean enough. Nothing about trying to feel my own body, to explore it and to enjoy it. ,also, nobody was touching us and we were not allowed to touch each other at all. of course, boys getting nine, ten years old, sleeping with twelve in one bedroom, begin to explore each other. Unfortunately the "control, often came and punished us. We were observed all the time.
Something else, nobody thought about in those days, was smell. A smell is a very personal thing and goes, so to say, straight to our heart. It is therefore easy to communicate about smell, we like it or we don't. When we get older, smell brings memories in our minds. When I was a child smell was for me very much connected to "the moment" in my dream world. The smell of green grass and green leaves in spring time and falling leaves in autumn, the smell of certain perfumes, shampoo, cigarette smoke made me feel, that now it is going to happen! I have learned from other deafblind people, where their family or professionals paid much more attention to smell and touch (especially in African countries) that they live much more in the "here and now" and they express much easier what gives them a wonderful feeling.
Every child has a period in its life, where it is fascinated by everything that comes out of the body. I was fascinated by urine, not the smell or the taste, but it feels warm in the beginning. We all knew from each other or from the pedagogues, that everything that comes out of the body is dirty and even the toilets had windows (for security reasons?), but the dreams about playing with it were there. At that time I was also fascinated by horses, the smell and the sound of them. I dreamt that I could touch them and move under them while they were walking. I never got to touch a horse at that time. I have known others, who were fascinated by things to touch: clothes of certain material, plastic shoes, Braille books, a nail brush, a spunch, a plastic bag filed with water. The fascination of touching things can be sensitive: it gives a good feeling to touch it or cognitive: I like to study the structure. We are not in the stage of erotic feelings yet. It is always a good idea for family members and professionals to give deafblind children a lot of things to touch. That stimulates the emotions, the brain and the positive or negative reactions. For the same reasons, it is also good to try all different kinds of food.
When I was about 11 years old something happened to me, what happens to many boys of that age. I woke up with a whet pyjama. I got very frightened, because we were always punished when we happened to water in our beds. I had no idea what it was and where it came from and if other boys could have had the same. Nobody told me anything, but I was soon after moved to a group of older boys. The boys knew the secret places there and they had their sexual demands. I learnt how to satisfy them in many different ways and that is how I learnt to masturbate myself and that it is a wonderful feeling. I started to do it where and whenever I felt like. I knew, that when the boys wanted me, it was a secret, but doing it myself felt naturally. This time it were the teachers in the classroom who tried to stop me by saying: "don't do it". They said that to nobody else, so I concluded, that nobody else did it in the classroom. Maybe this was also a secret? I decided to make it a secret, although I still don't understand why.
The question is if this is the way of learning how to masturbate. Many of my deafblind colleagues have the same kind of stories, also women. How women learnt to play with themselves is different for every one and an ineividual secret, like for any body else. We should respect that! But... I have heard many stories of girls and women, who have been abused, by personnel in institutions, and also by family members. Many times the victims did not even know who it was and we are not talking about developing countries here! We have here a complicated and life long continuing matter, which I want to explain here shortly. I have always been observed and so were "the boys". Others decided what was good for us, what we were allowed to or not. We did not learn to think ourselves. We did not get a mechanism from our insides to feel the border between my body and your body. We were not allowed to touch other bodies, so they were just not there. No bodies, no borders. And if I don,t get to know my own body, I don,t get to know and to handle my own borders. I still have hardly any borders. People without borders are easy to be abused. On the other hand, having no borders ourselves, we did not get to know the borders of other persons, which easily can make us into abusers. I believe, that if we had learned to explore and enjoy our bodies, our development would have been totally different. Maybe we wouldn,t have needed somebody to teach us how to masturbate. We also would have felt, that it is something very private, belonging to me and my body. The question still can be asked: do we need anybody to teach children how to do it? The answer to this question depends a lot on our attitude. If you feel unhappy, unsecured, unsafe, afraid or disappointed about it...don,t be the teacher. I did not have a fantasy of another person or a certain scenario in my mind when I did it with my self. It was totally directed to my own wonderful feelings. It had nothing to do with falling in love, even not with "the moment" although I was still waiting for it to come. I have understood that children with some vision much earlier have a picture of somebody else in their mind when the process starts. Eyes catch the interaction between people much earlier and seeing other people,s bodies may stimulate the fantasy on a different way than when you can not see. That does not mean that also deafblind children who have some vision do not need to get to know and enjoy their own bodies. Vision is very dominant. Touch, smell and taste can easily be forgotten. Many deafblind people, grown up in the schools for deaf and hard of hearing children have reported sexual abuse. Here it is lack of attention to touch, smell and taste, that gives the children no borders. Unfortunately there have been and are still pedagogues and teachers who know that very well!
On the institution I grew up there was a kind of double moral. Boys and girls were carefully observed if nothing was happening between them. Male pedagogues were also not allowed to work with girls. Female pedagogues however were very well allowed to work with boys, which resulted several times in pregnancy of the women and the boy in case and the female pedagogue had to leave the institution. I have often asked myself: "is it possible to repair the situation for a deafblind person without borders? Is it possible on a later age to learn to enjoy your body and get a kind of ME feeling to be protected against abuse?" I believe, this depends on the communication, the temperament and the time of life of the person. When I look at myself, I have to admit, that in times of a big desire I forget what I have learned. I learnt a lot with yoga and relax exercises, I love the sauna and massage, but when does it happen? I am now so far to talk and write about it. Maybe that helps, but...but maybe I don,t want to have borders at all.
Back to the past. I got a bit tired of "the boys" and I began to feel something inside for girls. I started to dream about the arms around me of female singers. Their voices made me warm inside. I also started to think about my class mates. How does a girl look, feel below the belt? I had no idea abou t how a girl got satisfied, if ever, like I did. I got curious, I tried to touch and feel the girls, but I was every time discovered by "the control". "the boys" were big and fat, had hair on their legs and under their arms and on their chest. I hoped and expected, that girls also would have that. When I was 17 I had my own room. I fell in love with a wonderful girl and I got to feel her. There was a lot of hair between her legs, but for the rest? and what should I do to make her happy? Unfortunately she died in a traffic accident later. I am still dreaming about fat girls with a lot of hair everywhere. After I left the institution I got some literature that helped me a lot. I could have got better information much earlier. I think, young deafblind people should have the possibility to feel living models, but the models should be unknown persons. No personnel, no family members.
I also like the idea of hiring special persons from an escort company to give deafblind adults something like a sexual experience, but the escort people should be well prepared and able to communicate with the deafblind person. I am not only talking about women, who should be hired. We also have to realise, that the border between hetero sexuality and homo sexuality is not so strong among people without borders.
And then the question: should those deafblind people without borders be sterilised? I am, but after I got two children. In principle we say in UN "no", but I also know that this is , a very individual question. I think, that if deafblind persons are able to have a clear communication and a sexual relation with somebody else, she or he is also able to look aq the consequences. Again, it depends on our attitude on sexuality and having a good life, what we decide.
In general: fear is a bad councillor. Try to live and enjoy your own sexual life and be as such an example. Use your brain, intuition, feelings and all your potentials. Be yourself and try to make your deafblind pulils, peers or friends happy to do the same.
Enjoy life with everything you can!
Lex Grandia.
(2005-12-07)