I really didn?t want to come back to this but have been made aware of this idea of having to post warnings about negative posts about autism and just couldn?t stand back really. Also realise that I?d be ignoring a lot that people have taken the time to write, including Amber, so thought it would be rude not to respond.
First, thanks to those who have made an effort to understand what I am actually saying.
Amber I didn?t actually realise that you are the mum to an SN child. You?ve said before that he has dyslexia but I never knew that he had been diagnosed ASD too. My point was that you rarely post as a parent about your child, but usually as a person with SN. Your approach to the infamous poem was not a reaction as a parent, but as a person on the autistic spectrum. All I did was to point out that your perspective as a person with a disability rather than a parent with a child with a disability is very, very different, but this board is for parents with children with SN and, as such, will not necessarily make for nice reading with people with that disability. It is not primarily a support board for people with SN and, as such, its content is very different from a forum intended for that purpose.
That is not the same as saying that you shouldn?t come here, and it?s a shame that your friend from another part of the board was drafted in to the argument here to pretend that that was what I was saying. I?m just saying that, inevitably, parents will see disability differently from the person with the disability. I wouldn?t expect a parent of a child who had Aspergers to go onto a website for people with Aspergers and say, ?all this celebrating Aspergers makes me uncomfortable because my child is really making my life hard?. They?re different audiences and purposes. People need different things ? some like the Holland poem (I don?t, but Gracifer says that it really helped her, so who is to ban poems just because they don?t like them if they?ll help someone else?) and some like the Beirut and the Schmolland one (I do). So banning all poems sits as uncomfortably with me as banning anything else. One person?s crap is another person?s saviour.
You do seem to assume that my posts have only bad intentions. I say: you?re lucky as your life is good ? own business, marriage, child. You say: no, but being on the autistic spectrum is really hard and can be hell at times.
I say: autism is really hard. You say: no, but it?s good, really; don?t say it?s awful.
I can?t win. And no, it?s not about winning, but when you and other people seem to interpret my (polite, non-abusive) posts as being ?against? you, it is frustrating. I am not against you, but the point that you are making. However, note that I am not asking you not to post your viewpoint.
I do find it quite offensive to be lectured about the need to learn about disability when you said, on the site stuff thread: ?but it just would be so lovely to have new people who join the board given some clues about how to respect others with a disability on there. Surely most people would actually like to learn a bit about disability, rather than just seeing that line of gentle warning as some sort of censorship?. I think that we all know quite a lot about disability on the SN board and I don?t think I need clues about how to respect others with a disability. I have not been disrespectful to you and I can?t see that others have either. Not agreeing with the idea that the board should be censored to only suit people other than the group that it is primarily intended for is not being disrespectful of disability.
Your repeated references to the DDA and disability hate crime in reference to what it currently being said are also quite offensive to me as the implication, as I?ve said, is that discussing that poem or saying ?I hate autism? is akin to being anti-disabled and hating disabled people. I totally disagree and feel that saying ?I hate autism? (as people have done on this thread) is not the same as hating your child or people with autism. It?s hating the disability and its impact and people have to be allowed to do that. It?s reflecting their wish for their child to have an easier life, without autism. The ?My Name is Autism? poem personified autism and made it into a monster-type thing. It did not make people with autism out to be monsters or disgusting or any of the other things that you keep repeating?though of course, people don?t have the benefit of seeing the whole poem anymore to choose for themselves: they just get your edited bits or your version of what it said.
?"All autism is a terrible disease that destroys lives utterly. Its people are embarrassing and cause loathing and disgust in others" is what you ?quoted? from the My Name is Autism poem on the site stuff thread. That is not what it said and is your own perspective on it. It does not say that its people are embarrassing; it states that it causes embarrassment and many have come on here to say yes, it can. Other interpretations have been offered to you and you still cling to your own version of it. Please read what others have said about this poem, particularly saintlydamemrsturnip.
The DDA talks about reasonable adjustments. I don?t know if it is reasonable for parents of children with severe elements of autism to feel like their voice can?t be heard. I don?t think it is, but others may differ. You need to feel safe, but so do those who feel they need to voice their frustration and anger and sadness, if necessary. You keep saying ?oh, people can say that they are upset about their child, but can?t go beyond that because a) it?ll upset you and b) it?ll break the law.
You gave these two examples: "Arrghhh, I've had the day from HELL with my ASD child and I want to SCREAM and if social services send me one more Cr&pppy social worker I will need an entire bottle of gin!" Nothing wrong with that at all. Not a thing. Doesn't bother me in the least.
"All autism is a terrible disease that destroys lives utterly. Its people are embarrassing and cause loathing and disgust in others"
See the difference? I do, literally. My brain sees the pictures of those two things, as if they were plays on the tele. One is a picture of a very stressed out mum who needs a hug/cup of tea. The other is a sinister picture of horror.?
But the ?My Name is Autism? poem didn?t actually say the second thing and your ?guidelines? about what is OK and not OK to say about our children have two problems: 1) if we are told what we can and can?t say, we lose our freedom to say how we feel 2) sometimes people want to be able to say that they hate a disability without being told that that actually means that they hate disability and are committing a hate crime.
Very, very often, people on here say about their children?s disability (not their child), ?I hate epilepsy? or ?I hate CP??people have also said (but only in the last week) ?I hate autism??but Davros is right that that is taboo on here and being told to post warnings if subject matter may offend does not help parents to feel safe to say their feelings ? in fact, it forces them to label their own feelings as offensive! So while I understand your pleas to ?feel safe? on here, there is another perspective too: that parents need to feel that way too, which is no less valid for the fact that I (and others who agree with it) do not have SN.
Riven, for example, hates epilepsy for what it does to her child ? understandably. Many parents of children with autism have said on this thread that they hate autism ? understandably. That doesn?t mean that they hate you or any other person?you have to remember too that when this is said, it is said about a child, who is usually the most loved person in that parent?s life. I love my son more than anything, but I do hate autism at times. I do. I hate what it has done to his life as opposed to how his life would have been if he didn?t have it. Not all the time, but at times.
And I want to be able to say that and not be then misinterpreted as saying that I hate autistic people (and I want that right for others too). That is all.