SN board and disability accessibility compromise

[amber32002]

Dear lovely Mumsnet leaders,

Please can you help?

On the SN support thread, we're trying to find ways in which we can warn people with an autism spectrum disability that a mum is about to rant about autism in what is to us perhaps a scary way that we're not able to cope with because of the disability. (which wires the brain directly into the panic centre). Not all people with an ASD react as uncontrollably to sudden fear as I do, but some do, and it's a problem for me if I can't care for my family because my brain has suddenly panicked and shut itself down, if you see what I mean? I want to join in because it's such a support for me, and I don't want to make a complete berk of myself by getting my brain overloaded and then coming out with things that end up not explaining or making it worse .

I don't think we want to stop mums from saying anything they need to about their feelings about each disability (well, as long as it's within the law, of course) - it's a support forum for SN parents after all. But I need to be able to stay safe on there whilst respecting their need to rant.

I suggested a WARNING line in the message subject, and maybe there could be a tiny bit of guidance from mumsnet to remind people that all they have to do is put that warning at the top? But I don't know if you have any better ideas? I want to be able to join in in a safe way, and I don't want to ruin the rights of others to express themselves.

Any ideas?

Thanks muchly
Amber (mum of an SN child, and I have Asperger syndrome)

[FredWorm]

But the point is that we do see the difference. I imagine that a post of that sort is rare and doesn't go unchallenged. Certainly I would be immensely upset to see an equivalently dogmatic and hating expression about depression.

And you posted that content without a warning -- confident that the quotation marks around it would indicate to all that they weren't your thoughts and we sufficiently distant from the shared attitudes here. That is all that is needed ???

[morningpaper]

well that really IS crap

even worse than the drivelly drunk driving one

I am coming in favour of the NO CRAP POEMS in the Terms and Conditions

There is never an excuse for crap poetry

[pagwatch]

Actually I retract that. There are generalised shit statements about disability and ASD all over the board but not IMO on the SN board.

And elsewhere they are usually challenged ( although not always successfully )

[morningpaper]

The problem is that you are never going to be able to moderate for people with terrible judgement or indeed, no literary appreciation

[saintlydamemrsturnip]

The poem did not say "all autism is a terrible disease that destroys lives utterly. It's people are embarrassing and cause loathing and disgust in others" - that's an interpretation of it, and not the one I had.

I thought the poem was pretty dreadful (but I tend to think most of those things are) but I really don't think you can control what will speak to other people or what things other people will identify with.

I thought the poem probably would be very relevant to some people who having just emerged from the aftermath of a regression were ready to 'take autism on' in a sense. It's not particularly something I've ever felt, but I know people do and it's not my place to judge them.

I think you just have to remember autism is not one thing. Never has been and never will, so people are going to respond differently to different things. And if someone is identifying with something that you can't see anything to identify in at all then you're probably not talking about the same thing.

[MrsMuddle]

TMMJ, I think it would be too controversial, but you can probably Google it. The first line is "I am autism", I think.

[morningpaper]

Was it My Name Is Autism by Marty Murphy?

[morningpaper]

this is here here She is a motivational speaker and campaigner: she has autism

[saintlydamemrsturnip]

Take Welcome to Beirut It's not something I particularly read to gain strength to tackle the day but there was a time when I found it useful (particularly because people kept sending me 'Holland' which I didn't find useful at the time) but I have no idea now whether that would be an acceptable piece to share with someone. It mentions the embarrassment factor in much the same way as the other thing, although I guess it's more positive.

Likewise autism every day which I was told about on Mumsnet - I thought it was a great portrayal and found it a useful thing to pass on- yet it's hugely controversial in the wider autism community (in the main because of a misquote- people say one of the mothers says she wants to kill her autistic dd- she said nothing of the sort she said "I would rather drive off the bridge than send my child to THAT school' which has an entirely different meaning).

The people I have come across online who don't like Autism Ever Day are not living with the same autism as us. So I'm not surprised it doesn't resonate with them. But that doesn't mean I wouldn't want to share it with people in my situation. And I tbh see it as a positive thing because of the ending, not negative.

[MrsMuddle]

Yes, that's the one.

[morningpaper]

But she is a fairly well known writer and advocate about autism, isn't she? I am not sure how you can avoid her work?

[amber32002]

Fredworm, if I've made a mistake by putting in the example as an illustration, I'm really sorry but I don't know how else to explain it

and Mrs T, it was an example of the sort of thing, not an exact quote. I was just trying to help people understanding, if you see what I mean

I'm just making it worse. I so need to learn to let my advocate do the advocating for me, don't I?

[FredWorm]

No, no, of course you haven't made a mistake. My point was that it was fine to include it -- because we and you understood the significance of its conclusion.

You make your points as well as anyone, I'm sure you must realise that. And it is a good discussion.

[morningpaper]

here it is laid out properly

[FredWorm]

.. of its inclusion I mean, not conclusion.

[amber32002]

The poem? It dates back from 30 years ago, incidentally, and was first written by a lady who decided that it was so bad it needed to be removed from circulation, but Marty has reworked it and republished it.

Hell, I'm really sorry that I'm fouling up explaining things, folks.

I'll get me coat...

[TotalChaos]

AMBER - don't click on the link in morningpapers post of 10:58, it's a link to "my name is autism".

[morningpaper]

tmmj : the author is a woman with autism, who speaks about autism in America

It is a controversial poem but it is really about how we can combat the perceived negative effects of autism with understanding and courage

at least that's how I read it but I know naaaathing

[morningpaper]

Oh sorry about the link, how rubbish am I?

OK sorry I don't know the original version of the poem, only this version

[saintlydamemrsturnip]

But amber you demonstrated your interpretation of it. My point is that someone else can read that and interpret it differently. I don't see it as saying a child with autism is disgusting. I see it as saying autism has robbed a child of their opportunities in life. From the position of someone who runs a successful business you might think that unfair, but from the view of someone with a child who can do nothing - can't even watch TV - who might have been able to talk and play 6 months earlier it might seem an entirely fair thing to say.

Now whether autism robs people of opportunities is open to debate but I think the piece demonstrates the difficulty in someone trying to work out whether a particular piece is going to offend. Because it's going to be interpreted according to what is going on in someone's life.

[saintlydamemrsturnip]

It's not a poem as you said, it's a piece, like welcome to holland or welcome to schmolland (my favourite I think) or welcome to beirut.