All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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09 March 2009

World Autism Interviews: Norah vd Stel/ Netherlands

Netherlander ducks
Utrecht Centraal

Interview with Norah vd Stel

Norah is diagnosed with Asperger's. She graduated from Universiteit Utrecht where she obtained a Bachelor of Arts in Translation. Unfortunately, she sadly failed to obtain her Master's degree due to lack of services and supports.
Though she has a wide range of interests, her special interests (or 'perseverations') are autism, language and languages, PC gaming, reading and story creation, and Japan.

Norah does online activism for autism, as well as other things how and where she can. She has plans to try and improve, in her own way, the situation for autistic people in her own country in 'real life'. If you are interested, her blog can be found here.

E: Tell me about your life in the Netherlands. How old were you when you received an Autism Spectrum Disorder diagnosis?

Norah: I found out I was autistic when I was about 11, and got a diagnosis of Asperger's at 24.

E: Is anyone else in your family on the spectrum?

Norah: My mother and one of my brothers are also diagnosed, and I have many other family members I suspect are on the spectrum and would be diagnosed if they went in for diagnosis, but will not elaborate because they may not know or care, or may even be averse to the idea.

E: What city do you live in and what is the housing situation like for autistic people? Also, what type of housing do you inhabit?

Norah: I live in Leiden, sort of a medium-sized city over here, but it is more like an overgrown village. In this town, the housing situation for anyone who needs social housing is extremely bad. If you are autistic, but do not live in some sort of special accommodation (and if you are not rich enough to get a loan to buy a house or rent expensive housing), you will be in the same situation as the others who need social housing. My partner and I live in an apartment building, also social housing. We were lucky to get this place, because the waiting line for social housing in this town is 10 years (if you are looking for your first ever place to live on your own, and our other apartment didn't count since it was University property) and we were only halfway through that line. However, for some reason no one wanted this place so it got rejected 44 times and then it was our turn to choose. Since we were about to be thrown out of our old place, we said yes (but we also saw nothing wrong with the apartment or the neighbourhood: I still don't know why all those people rejected it).

E: Does the Netherlands provide adequate services for autistic people?

Norah: No. But right now the Netherlands doesn't provide adequate services for any kind of disability group (or other groups that need them, like the elderly), so it's not like we're a special exception. It actually used to be somewhat better, before a series of bad governments kept cutting funds from the care sector. It might get better again from now on, if we protest hard.

E: Where is the most improvement needed, for autistics, in the Netherlands?

Norah: That is a hard question to answer. I guess it all depends on where you're at in life. If you're of school age, the biggest problem might be school or transportation to school (or wherever you spend your day). In my case, and I'm guessing many other adults are here as well, it's better job accommodations and better housing situations and better services in and out of the house that are needed.

E: What services, for autistics, are run efficiently (if any)?

Norah: A few positive points: we have Autism Centres throughout the country, usually one is nearby, if not in town, then the next town over (and this is a small country). They have a lot of knowledge and can advise us, and usually also provide certain services. MEE also offers good and practical service for the short term (though some people have bad experiences, that usually has to do with the individuals they meet there, the service itself is good). And although it needs work and can be an unpleasant process to go through, it's not too hard to get disability income (Wajong) if you're autistic and need it.

E: Do you consider yourself a member of the growing Autistic Community (by this definition)?

Norah: I guess I am, since I participate online.

E: Tell me about the Autistic Community in the Netherlands.

Norah: I'm more a part of the international Autistic Community than anything specific to the Netherlands. I used to participate in Dutch forums and such as well, but I dropped out after a while due to the (and I will probably offend some people if they read this) whiny and depressing atmosphere there. There was just too much nonsense going around. There is that too in the international community, but since it is so much larger there is also a larger part to be found that I can be a part of (or feel comfortable with). So by now I'm pretty out of touch with any larger Dutch Autistic Community, though I do follow the blogs of a few Dutch autistics and am a member of some Dutch autism groups on Hyves (a networking tool like Facebook).

E: What is most appealing to you about the worldwide Autistic Community?

Norah: The fact that it is so large: I can find people who are like me or who have interesting insights to offer so easily over the internet. Seeing people who disagree and their reasons is also educational (and it's not such a limited group as in just one small country). People can offer advice and tell you about how they do certain things in their countries. The internet also makes it possible to more easily connect to other autistics: in real life, support groups or groups that get together are largely for and by parents (or they do stuff I don't find even remotely interesting :D).

E: If you could spread one main message to the public about autism, what would it be?

Norah: I honestly can't think of one single thing I would want them to know over anything else. I could give them a list of books to read...

E: Tell me about education for children who are on the spectrum in the Netherlands. Are there special programs and classrooms? Mainstreaming? Accommodations? Legal protection?

Norah: There are some special schools for children in general who have learning difficulties, behavioral difficulties, or both, and there are a few schools especially for autistic children, but mostly children will have to try to struggle through regular schools. Some government some time back decided that being segregated wasn't good for kids, so they should go to regular schools with some help. Unfortunately, they were too dense and/or cheap to realise that their system for helping these kids go through regular schools was painfully inadequate. Children are supposed to go to regular schools and receive any special help they need through what they call a 'rugzakje' (diminutive form of backpack), which is: funds to pay for the help. It's not working. Which has resulted in many autistic kids just sitting at home doing nothing, sometimes for months and months (despite school being compulsory until 16), because the rugzakje doesn't work, and there are now fewer special schools and the ones that exist are often already filled beyond capacity. (Keep in mind that I have no personal experience here: when I went to school the system was different and I have no kids of my own. My information comes from our country's National Autism Society. I trust it is accurate.)

E: Give me the gist of how disability is viewed in the Netherlands. Are people open and accepting, as well as understanding? Or do people deny disability and avoid it when possible?

Norah: I guess it is a mix of the two. As far as I'm concerned, of course, still way too little understanding and openness. A lot of people will be able to 'blissfully' go through life never even having to think about it until they turn elderly and might need some extra care (or their parents do). A lot of people I have told my diagnosis, at least, seemed sort of uncomfortable, sad, or both, but they come around easily when I do not accept this. I think there are a lot of people whose general opinions have not yet been formed (at least concerning autism).

E: Are there organizations in your country promoting autism awareness? If so, what is the message offered?

Norah: The NVA (our national autism society) offers a relatively balanced view, focusing mostly on the need for more and better services, and also research somewhat. I am not dissatisfied with their actions, though I feel they need to include autistics more, and there are a few instances where they still tend to slip into the whole 'suffering, woe and pity' thing. There may be more, but I have either not heard of them, or do not like them.

E: Just for fun, what is something about the Netherlands you think other people would be interested in knowing?

Norah: Not so long ago, someone from another country asked me why we call ourselves the Netherlands. His thought ran something like this: "Who would want to call themselves low? Are you all depressed or self-loathing?" I had to laugh and told him that it refers to the actual land: it's low. We sink, quite rapidly in some spots :D. Large parts of the country lie below sea level. We're mostly flat, apart from a few spots way in the east of the country. Also very watery. But apparently, a lot of people who are not from here have no idea. I wonder how many other people walk around with similar ideas :D.

E: Are there any Netherland myths you would like to correct (lay people over here in America may think you wear clogs, build water wheels, yodel, and drive Volvos)? Please set us straight.

Norah: Maybe you could tell me some more common myths about Dutch people that exist in other countries. Then I could dispel them (or not :D). While some people drive Volvos, the car brands are very varied here ;). Yodelling is even the whole wrong country: that's for mountainous regions in the alps. Clogs hurt your feet: try it sometime, plenty are still around in tourist-trap shops in the centre of Amsterdam. I prefer regular boots and shoes, thanks. Water wheels are a bit redundant in this day and age, don't you think? Granted, they look pretty :P.
I would like to extend a hearty thank you to Norah. It is a magnificent treat to be in touch with someone outside of America. What an honor it is to receive news from a distance.

1 comment:

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