Sacrifice

I promised that this would be a happy blog, but my life started with some challenges, so sorry that this first post is a bit heavier. I was born on March 26, 1965. I grew up in a warm working-class family, consisting of my father, mother and an older brother and sister.

In 1965, no CT or MRI scanners existed yet. There were also no other methods available that could demonstrate that a child with a disability would be born. So my parents only knew that I had a disability when I was born.

It goes without saying that a disabled child has enormous influence on the whole family. Certainly in the 1960s, when – in addition to the above-mentioned diagnostic equipment – a lot of knowledge and experience as we know it today was not yet available. This required a lot of inventiveness and dedication from all family members.

As a child you just experience that; you go, as it were, with the flow of life. You deal with what life offers you. But I think it was much harder for my family. The countless hospital admissions in various hospitals throughout the country, for example. At that time you could already be happy if there was enough knowledge in the country, not to mention that you could go to one hospital for all the necessary disciplines. My family did it all with love: I received the best possible care that the Netherlands had to offer and at home unconditional support, attention and love from everyone.

When I look back on that period I can remember little of my earliest years, because most of the interventions took place at a very young age. To give you an idea: in the first 2 years of my life I went under the knife 8 times. Things changed in the teenage years. Then I experienced everything much more consciously, and even though I had no idea what could go wrong, I didn’t like the messing around with my body. Every time in that stupid hospital, torn away from the familiar pleasant environment for weeks.

However, there is also a nice side to all of this: I am now 55 🙂 I succeeded thanks to my family, and to medical technology – which fortunately was good enough for me to survive – and of course the countless health care professionals. That I have been living for more than half a century now – without wanting to act dramatically – is not self-evident. I belong to the first generation that survived spina bifida aperta.

Less and less

Spina bifida is less common nowadays. This seems to be a good development, but unfortunately it is not. The fact that this condition is less common than it used to be is because abortion is more often chosen by future parents who expect a child with spina bifida. In fact, in more than 80 percent of cases, the parents decide not to let the child be born.

There may be legitimate reasons for this. The book Echo by author and ‘experience expert’ Maarten Slagboom describes, among other things, his own experience as a possible future parent of a severely handicapped child. But doctors and other professionals in the health care sector also have their say.

I did not read the book at the time of writing this post. However, I have read the reactions to the book, which I found very difficult, frankly. Certainly a reaction that says that a woman decided to have an abortion because the child would be born with a paralyzed lower body. Of course I don’t know what any other motives have been to come to that decision, but if the only reason really was just that paralyzed lower body, then I can’t understand it.

View of society

When I had read the above reaction I could only think: ‘how malleable do we want our society to be?’ Does everything that is broken or damaged have to be repaired and if not we should destroy it? Again, I don’t know the medical history of the reaction I mention here, but really, a dysfunctional lower body means the child will never be able to walk, and will likely have problems with the bladder and kidneys, and maybe the bowels too. That is terrible of course but on the other hand, the technology has been developed to such an extent that for many of these problems a partial or perhaps even a complete solution is possible. That is why I hope that there will come a time when we are so ‘enlightened’ that we no longer want to repair everything but that we can accept that not everything is the way we would like it to be. How beautiful would that be? It saves a lot of grief, money and frustration and we get a positive feeling in return. I think it’s a win-win situation.

Practical experience

I seriously wonder how many of those 80% of the parents who now choose to have an abortion would have made the same choice had they received information from an experience expert in addition to the care professionals; someone living as an adult with a similar disability. Because this is where I think – despite all the excellent care that is available in the Netherlands – it is still lacking: involving people with hands-on experience in dealing with a disability in daily life, that can make the choice of whether or not to abort in such a situation a bit easier and more ‘educated.’

I am well aware that I am saying this from a subjective point of view, but perhaps that is why I want to make this point in the first place. We often fear what we don’t know. Healthy people do not know what it is to experience life from a wheelchair and therefore think that it must be terrible to see the world from a chair with four wheels instead of two healthy legs with two healthy feet.

Admittedly, living with a severe physical disability like spina bifida isn’t always about roses. Often a number of surgeries and other treatments are needed to enable someone to function properly in society. But is that sufficient reason not to allow life for such a child? Why does a little suffering no longer belong to life, but everything has to be continuously healthy and supposedly perfect?

I have had about 25 surgeries so far and have had to endure some unpleasant treatments. In retrospect, that pain and grief was an investment in my future. Without that pain and sorrow, I would have been as dead as those children who were not born. By enduring that pain and grief, I have been living a good life for more than 30 years now – most treatments and procedures took place in the first 20 years of my life. I think that is an excellent investment.