Privacy

The development of new technology seems to be going faster than ever. Nobody had a mobile phone in the early 1990s. The first devices came on the market around 1993 and from that moment on developments went very fast. If you could only make calls with the first devices: the modern smart phone is in fact nothing less than a complete office. Call, fax, email, chat: it’s all possible. But other developments such as the advent of the internet and social media also ensure that we have unprecedented possibilities that we did not even dare to dream of twenty years ago. All this does have an important consequence. Because our society is increasingly computerized and digitized, we give up a large part of our privacy. Companies and the government know a lot about us. One push of a button is usually enough to bring the most personal information about us on the screen. It is the price we pay for technological progress. Although many people don’t like the fact that the established authorities know everything about us, no one rebels. We seem to accept it.

How different is that when ‘ordinary people’ ask us personal things. For example: I don’t know what he or she earns from anyone around me. Talking about your income is absolutely not common in the Netherlands and is even considered rude by many. If I am very honest, I don’t understand that. I don’t know if anyone has an interest in it, but I can tell everyone that I think I earn tons of money, but in 2020 I have to live on less than 1,000 euros net per month.

Physical integrity

Fortunately, what has remained intact is our physical integrity. This form of privacy is enshrined in the constitution and should therefore not be simply violated. What exactly is physical integrity? This means that no one should do anything with your body that you don’t want. For example, a doctor should not treat you without your permission. Of course there are exceptions to these rules. A police officer may search you if there is reason to do so, for example if you strongly suspect that you have done something punishable.

From the first day of my life, my medical situation has caused my physical integrity to be violated on a regular basis, and it still happens with some regularity today. Of course – just like any other baby – I was totally dependent on my mother and other caregivers for my personal care. That was nothing special in itself, when you are just born you simply cannot do those things yourself. But where this with most children quickly stops because they learn to take care of themselves, in my case it went on for many years longer and I still have to tolerate strange hands and eyes on my body from time to time.

It only became clear to me that I was different in that regard when I entered puberty. Children around that age close the door firmly behind them when they go to the toilet or bathroom. They want privacy: these are not activities in which the presence of others is desired. For me, however, I remained dependent much longer on other people for these everyday things. This remained the case in the first part of my childhood.

That childhood took place in the 1970s. I spent a large part of my teenage years within the protected walls of Franciscusoord, now renamed Adelante. This is the largest rehabilitation center for children in Limburg. Not much of my physical integrity remained – certainly in the early years. The personal care took place in large rooms that were set up for this purpose. In fact, they were complete bathrooms, so large that you could easily have several people at the same time. And that was exactly what happened. Up to three children were cared for in one and the same room: boys and girls mixed together. Nobody was surprised. Certainly not the children, most were still too young to be involved in matters such as sexuality and safeguarding your own privacy. I don’t remember exactly but I believe I was around 14 years old when the policy changed and the boys were separated from the girls during personal care.

Open-minded

Yet as a disabled person you had to be open-minded at the time, whether you liked it or not. I can still remember that at one point I had pressure sores on my buttocks. Pressure ulcers are the medical term for a wound caused by lying or sitting for long periods of time. In my case it was because of being in a wheelchair all the time. Unfortunately, at that time there were no good anti pressure sores cushions as you currently have for wheelchairs, so this condition was common. Fortunately, I only had it once in my life, but it was immediately a very severe one. The wound was very persistent, every effort was made to close them as quickly as possible. Lowering the pressure was of great importance. I had to lie on my stomach as much as possible, on a kind of stretcher that had large wheels, enabling the patient to move it around by him/herself. The intention was that the pressure relief would allow the wound to heal. Unfortunately this did not work because the wound started to infect. They worked enthusiastically with all kinds of disinfectant gauzes that eventually slowed down the inflammation. But the wound was still far from closed. After trying countless creams and other remedies, the second last remedy was tried: air. I had to lie on a bed on my stomach, without pants. A metal arch was placed over the bed and draped with a sheet. All this was supposed to increase the amount of air in the wound which would aid the healing process. Although my lower body remained covered for my classmates, it was an experience that I do not remember fondly. I felt very vulnerable and placed in an exceptional position; After all, I was the only one who had to lie down that way. It was mainly my feeling, because nobody was surprised. Every child at that school had a physical deficiency, therefore there was little surprise about my situation. Of course I was asked by a few classmates why I suddenly lay on a bed, but that was it. Children quickly adapt to a new situation, which ultimately also applied to me. I knew I had to keep this up for a few months so there was no point in worrying about it. After a few weeks it had become a routine; I accepted it. In the end it was in vain because positive results were not forthcoming. There was no other option than to close the wound surgically, after which I had to lie completely flat on my stomach for another three months.