Dear Mr. Pierre Mertens,
Thank you for sending me a copy of Liesje. I appreciated reading it; so did my parents, who also read it.
First, I should tell you a little about myself, so that you can fully understand my views.
I am ten and a half years old. I was born with Spina Bifida fifteen years after Liesje, her struggles and mine are almost mirrored. Yet I am lucky. I was not born with Hydrocephalus, although many people are. I feel that although there is a very big gap between the births of Liesje and myself, the same determination, and the never ending struggle against our disability still lives on.
Medicine has moved on a lot in the last fifteen or so years. More so than many people realise, but those who have been lucky enough to benefit from it really do. Until I read Liesje I didn’t realise how much.
The story itself is very moving. To read how Liesje’s parents fought for her life; Liesje fighting for her own life: it is all a miracle; yet her death, is a great shame.
I hope that the world will be able to hear Liesje’s story: to understand how she and her parents’ fought. The world should know; even those who have never had a disabled relative: those who have never suffered.
Special Education, in my opinion, is almost a ridiculous idea. Instead of restricting handicapped people, they should be given more independence. I believe that the disabled should be taught with other children, children who are not disabled, as well as the disabled. Teachers should be taught how to cope with a class of mixed physical and mental abilities (I myself am in a main stream school) and am the only child in a wheelchair with a disability that is physical). You should not have ‘special’ physiotherapists or nurses who come in to school to ‘help’ the disabled child; for in fact, that hinders the child’s independence and relationship with the teachers and class. Ordinary medical professionals should come in when the rest of the class are participating in activities that the disabled child cannot take part in (e.g. gym) as so to not miss the more important subjects such as English, Science and Mathematics.
Teachers should be prepared to make certain exceptions for disabled children e.g. giving them more time to do certain work (especially when the child has hydrocephalus or Downs Syndrome et cetera) or take tests orally (when writing is extremely difficult or the child cannot write). Though, teachers should not stop children from participating in games that the child thinks that she or he may be able to cope. (For example, my teachers would not let me participate in a game of netball in my wheel chair although I was a fairly experienced wheelchair user at the time) They should also let children have their own views, and listen to their ideas during a class discussion as their ideas can always be as valuable as the next child, with or without a disability. I speak from my heart and own experience in that particular matter.
No one should be told ‘you can’t do that’, because every child can surprise its parent, teacher, doctor or relative (my parents were told that Russell House would not be suitable because of the stairs. But that was no problem; I also walked before I was eight, which I wasn’t supposed to do).
Changing the subject- Abortion. Unless continuing the pregnancy is a great risk the mother or baby’s life, I would not abort. Abortion is a very cruel way to end a life; even a life that has not been out into the world. I think that most parents would agree with me; it is cruel not even to let some one try to live.
Liesje shows what you can do when you try: for instance, recently I have gone on a very long walk (or rather wheel in my case) in rather muddy conditions in France; also, I have learnt to play wheelchair tennis. Another great achievement for people with Spina Bifida is swimming; I swam 1000 meters in May.
These are my thoughts on Liesje; and matters related to the story. I hope that they will be useful to you; and that you understand them.