We are a normal family!
By Andrew Freeway
William Westveer and his wife Irma have 2 healthy boys, and both have an intellectual disability. Westveer, who is the director of the Dutch advocacy organization LFB, equivalent to People First, has very strong opinions about forced anti-conception and other meddlesome interventions.
"Irma and I decided to have kids. So we went to our general practitioner to have check ups and ask some questions. Irma's mother has MS and her father has emphysema of the lung. And my mum died of cancer, just like her brother. And my father also suffered from lung emphysema. And above all, I have a sister and a brother with Down syndrome. So Irma and I really wanted to know what our odds were for getting a disabled child", says Westveer.
After consultation, deciding to have children
But the doctor reassured them that Down syndrome was not hereditary. And cancer could be everybody's fate and he advised them to have a check up at the gynecologist. He also stated that their right to have children should not be hindered by the fact that they had an intellectual disability.
"We thought this over very carefully and read a lot of books on the subject. But finally, after consulting the doctors who were very supportive, we decided to go for it," Westveer commented.
The Dutch Health Council recently published a study called 'Contraception for people with an intellectual disability'. This study is meant to give doctors something to consult when counseling intellectually disabled people with questions concerning contraception and reproduction. At the moment most physicians do not know which way to turn when confronted with these questions. This situation can be attributed to a lack of knowledge and the lack of a social debate, according to the Council. Most intellectually disabled people are either seen as asexual persons or as people who are not able to make autonomous decisions on sexuality and reproduction. Therefore deliberate decisions on these matters are seldom taken by those involved. And the result of this indecisive behavior is very often either an unwanted pregnancy or a very frustrated person.
According to the Council it is evident that some intellectual disabled persons are not fit to raise a child. In those cases it is wise to prevent a pregnancy. And, the Council report continues, if a disabled person is unable to give informed consent, then forced contraception should be considered. But the law says that interventions are only allowed to prevent serious damage to a person's health and having a baby can hardly be seen as such a hazard. General practitioners, gynecologists and urologists should work closely together with those physicians who are trained to take care of people with an intellectual disability in order to assess a person's ability to raise a child, says the Council, and an IQ of 60 could be considered as the minimum.
"Both our kids are healthy; Joeri is seven and Brian is four and has asthma. He almost suffocated cause the doctor made a mistake. It was not our own doctor but a substitute doctor. Brian became ill during one evening and this substitute doctor gave him some medicine for the flu. But we knew better and wanted to go to the hospital. But the doctor did not find that necessary. Of course we ignored him and went directly to the pediatrician who had had Brian's asthma under control since birth. Brian was admitted to an intensive care unit and stayed there for a couple of days. When I confronted the substitute doctor with this outcome, he became very angry and said that we were mad to go to the hospital".
Professional support provided each week
"We are getting 1.5 hour professional support every week. They have checked us out how we were handling the children. For example, did we punish the children, how often and how did we punish them. And what kind of arrangements we had made for sleeping and eating. Joeri for instance is a handful as far as eating is concerned. He does not like meat. So we had to find ways to convince him that emptying his plate was worthwhile. If he does not want to finish his dinner we tell him that we will have fries the next day but that we will reheat his dinner. Wow, what an incentive! And if they are really annoying us, we tell them to sit on the staircase and rethink their behavior. Irma and I decided from the beginning that we would never spank our children. Beating only makes children aggressive. It is much better to take away their privileges like locking away a puzzle if they cannot stop arguing and telling them they can get it back if they behave".
"Disturbed parents of disabled children are our biggest stumbling block. They are very much against our organization. We should not become too bright. But it is not about being sweet or not. It is about the rights of people. A disability should not keep you from living independently or having children. At our headquarters troublesome news is coming in about the way institutions are forcing people to have a contraceptive injection. If you do not accept this way of birth control you are not admitted to the institution. But as far as we are concerned all institutions may close tomorrow. That way we will save a lot of money not spend on care managers and institutional merges. Cause that is all what they do: merge, merge, merge!
"Time and respect are the most lacking ingredients in institutions"
Let me make myself clear: I do not think that all people should have children. My own sister for instance wanted to have a child a couple of years ago. The institution called me and told me that my sister wanted to stop the contraceptive injection and that it might be better if she was sterilized. Instead I invited my sister to stay with us for a fortnight and suggested that she could practice with our newborn Joeri. After a couple of days she decided that she did not wanted children. Taking care of them was too much a burden, she thought. And when I asked what she wanted to do when she was having sex with her boyfriend, she said she preferred to be sterilized. When my sister came back in the institution she informed the staff of her decision. Later that day they called me asking what I had done to convince her. I told them I did not convince her; I just gave her the opportunity to consider her options and find out what she really wanted. She never had the opportunity to see and practice what life with a child would be. It was just a question of time and respect, that's all. But time and respect are the most lacking ingredients in institutions. Having a law that makes it possible to enforce contraceptive injections or sterilization is not necessary. Just close down all those institutions, give people their own budget so they are able to buy personal support and a lot of things will go much better.
Campaign to close institutions
Next December our organization will start a big campaign to close the institution and to bring people back in the community. Parents and the staff very often say that an institution is a much safer place than the community. But nothing is as unsafe as an institution. The numbers of people that are raped, or are fed contraceptives without knowing or knocked out with an injection or put in the isolation room are too many to count. Next week we will go to America to visit our partners at People First. Community Care is much more common over there. We want to learn how they have accomplished that" says William Westveer and rolls up his sleeves.
(source: Trouw, Holland)
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