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SN board and disability accessibility compromise

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amber32002 · 07/05/2009 07:38

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)

OP posts:
2shoes · 07/05/2009 07:45

didn't want to leave you unanswerd
I tend to keep of threads about ASD and autism unless they are general as I have no knowledge.
I think there should be something in the bit at the top of topic to remind people that this is a sn friendly topic.
I am sure there is an answer. I remember when Wannabe explained how it was hard if threads if people did thread titles with lots of symbols in them, people stopped doing it.

amber32002 · 07/05/2009 11:01

Would it help if my autism team got in contact with you, mumsnet?

OP posts:
sis · 07/05/2009 11:14


amber32002 · 07/05/2009 13:33

bump again

OP posts:
onagar · 07/05/2009 13:40

It would have to be added to every post since the OP does not know how the thread will go.

As someone who runs a forum I can tell you that it would be quite difficult. Every poster would have to evaluate their post in preview for experiences or opinions that could be considered difficult for certain people and then rate it accordingly. This couldn't just be in the SN section since that would effectively bar certain people from the rest of the site.

When reading a thread you would have to check this rating for each post before reading it.

You couldn't assume that a post without an alert symbol was safe since people might forget. You'd either have to change the way the board handles posts to insist one was put in every time or perhaps allow individual posters to hide every post that didn't contain a rating.

amber32002 · 07/05/2009 13:59

Fair enough...

Other ideas?

OP posts:
amber32002 · 07/05/2009 14:54

OK, I've asked my autism team if they have some. They'll be in touch.

OP posts:
amber32002 · 07/05/2009 18:42

It's odd, because I always thought that Mumsnet responded to posts here, but perhaps they don't?

OP posts:
JustineMumsnet · 07/05/2009 20:14

Hi Amber,
Sorry for the delayed response - lots of meetings today and I've only just looked in.

In general we take the view that it would be impossible to moderate/control posts on the basis of whether offense is likely to be caused. We are never going to be able to account for every individual's soft spot and wherever we drew the line (we'd have to somewhere) we'd be guilty of judging that someone's feelings were less valid than another's.

So the way we've landed on doing things on Talk is to allow pretty much most things to stand (even the sometimes objectionable opinion) and to intervene in the case of personal attacks (or if things are illegal/obscene). Very often, we've found, the ensuing discussion/ debate is enlightening and people's opinions are changed.

Obviously we hope that members will post sensitively and in line with our general philosophy - to make parents' lives easier - but to be honest a pre-warning on every post wouldn't guarantee it and would feel a bit heavy handed to us. We don't want to discourage exchange of opinion after all - that's what's Mumsnet's all about - discussion, communication, pooling of knowledge/ideas.

We are, though, as mentioned previously, looking at creating private support groups to allow more sensitive/private discussion of particular subjects or by particular groups, which I think may be helpful for you - the aim is to get these up and running in the next few months. We'll keep you posted - in the meantime please do post any further thoughts/suggestions here in site stuff. Thanks for your input.

amber32002 · 08/05/2009 06:44

Hi Justine,

Rest assured that in no way was I asking that people do not express their opinions in the usual way. We all do. Parent of children with a SN do need to be able to rant or cry from time to time. I do.

As you might know from the discussion that took place, there was a poem posted for comment that caused considerable problems and shock, not just for me but for a large number of others. Some people liked its contents, which of course is their right. It was also copyright and quite possibly breached one of the disability laws because it was written for a US market 30 years ago. The OP asked mumsnet to remove it, and you did, which was good.

But it did reveal a problem about how I can have a better chance of knowing where really things are being posted. As you know, I have a variant form of visual ASD that means that hugely generalised negative long things can 'crash my brain' for several hours and leave me too exhausted to do my everyday things for hours or a few days afterwards.

People can't always know what the triggers are, no. They're not psychic, but the big ones are the very long totally negative generalised articles (not the parents having a rant) that don't set out to give the slightest bit of good news or hope. Because we're naive and literal, with almost no 'people-bit' in our brains, it can become totally overwhelming and very panic-inducing to read a massively negative thing about our disability that (for an example) portrays the way we are as embarrassing and an infection worse than death. (!)

Trying to think how to explain why really long totally negative generalised things crash my brain...? A bit like if someone stuck a totally negative virus in the Mumsnet computer server and crashed your entire network. If it kept happening, you'd be tearing your hair out and want a way to stop it from crashing everything. Same sort of principle. Most people can rationalise their way past it. This disability means I have absolutely no chance of that once it reaches a certain level of relentless negativity.

So, I need to be able to duck fast enough so I don't read the stuff if possible. Doesn't mean it can't be posted if mumsnet are happy with it - I just need to find a way to not look at it, if I can, because my brain won't handle it and there's nothing I can do to override it crashing. In the job I do, I have a support team that can help spot the hazards, but here I'm 'on my own'. I'd still like to enjoy mumsnet though.

Normally the thread title is a good enough clue, but not always. People on there are lovely and usually very very good at thinking things through. It's a great board. I really like everyone on it. But are we helping everyone (including me) to avoid the biggest potential mistakes?

No system is perfect, and there can never be total safety in any open debate board, but I'd suggested that we could get round at least some of the hazards, (and help others too), if Mumsnet could put in a line of comment at the top of the SN board to remind people to perhaps post within the knowledge that people with those disabilities are also on the board. You'd be able to come up with the right phrasing, I'm sure. Otherwise the mums with children with SN may not realise that some of the other similar mums there also have those same SN. It might be mightily embarrassing for them to say, for example,

"I HATE anything to do with (whatever disability it is) I think it's DIGUSTING and I feel SICK even looking at it"

...and then realise that there's three people with it who are posting on there , all now doing this: . They might want a chance to rephrase it. They might not. It's up to them. But it would at least give them a kindly suggestion.

So... I think a quick bit of wording at the top of the board to remind them that it's a very mixed readership would give people at least a chance to rephrase things in a way that allows them their rant BUT doesn't cause panic for the person reading the comments, before they hit the "post message" button. They may not wish to, but it's a start.

And it would give people like me, whose brains are hardwired into the 'fear centre' (and who therefore have no choice about our level of panic whatsoever in unexpected negative circumstances), a better chance to join in without having huge problems.

It's free, it's easy, it makes sense to me.

If people could also be encouraged (not forced, encouraged) to think about putting the word WARNING at the top of a new thread if they had good reason to suspect it was a particularly controversial one, then again it would be a start. They might forget, or not wish to, yes. But most people do want to help save other mums with disabilities from undue hurt and pressure in their lives, but don't best know how to. It's not a perfect system. That's ok. People might want to post something rude about us anyway. Fair enough. People might post something rude later on in a thread that doesn't have a warning. I understand that. But it's a start. It might just save some of the unexpected problems for me and others.

I'd love it if I and anyone else with my variant of ASD could be even a small amount more sure of where the hazards are likely to be.

And I think many people, including me, could do with the reminder that we may need to get a decent cuppa and have a small think before pressing 'post'. Heck, I have a comms disability - I can be undiplomatic too

Please would you consider it? It doesn't mean you'd have to monitor it more than before,and it wouldn't cost money - just spend a couple of minutes programming in a reminder to people to think before pressing the button? It really wouldnt stop people expressing their angst at their lives with their children etc - the idea is just to give me a chance to not read the most problematic things if possible.

The idea of the new private boards sounds interesting. Good luck with it.

Please can you let me know if these ideas have any sort of merit for Mumsnet?

Many thanks

OP posts:
FredWorm · 08/05/2009 07:03

Amber, the possibility of smaller private boards sounds a helpful thing. I'm sure it might well generate the possibility of a venue where discussions of its members were very sensitive to the sorts of difficulty you describe.

But the warning button does sound like it would be impossble to work with. I don't have the communication difficulties that you eloquently describe but I do have the capacity for a 'negativity brain crash'. As a depressive I am incredibly prone to reading the greatest negativity possible into someone's words: even though I don't lack the software for 'reading' other people's intentions/attitudes, etc, I have in addition the unwanted software (malware) of depression, which systematically distorts people's words into expressions of hostility, contempt, criticism, etc. I could be affected for days also. So the warning button could be needed in menatal heath topic also??

And there are others here who have severe phobias, etc, who would be deeply troubled to come across a sudden description or image of their fear object.

In other words, there are so many different areas where a warning might tbe needed for some people. It would become such a heavy presence -- even assuming people had the knowledge of when to activate a warning.

We have to rely of informal devices -- and essentially on people's sensitivity. And there is already moderation that removes the kind of hideous example that you include in your last post ('such-and-such disability is disgusting, sickening, etc). Anyone who posts comments like that would be likely to lack the sensitivity involved in pressing the warning button!

amber32002 · 08/05/2009 07:09

Aye, I think I see what you mean, but it wouldn't be a warning button, as such, just a general reminder from mumsnet including that people can choose to put the word WARNING on the controversial topics? If they don't, fair enough, but I still hope it would be a start?

OP posts:
FredWorm · 08/05/2009 07:16

There's the general mumsnet philosophy thing, to the effect that we are here to support eachother and make others' lives easier. Perhaps that should be more prominent. I suppose the business of making the SN boards 'opt-in' is a device to get people to think before participating that there are a lot of special sensitivities within that board. And people are generally very sensitive there I think? So extra text might not help as much as you would need. And the difficult posts would perhaps be those where people were entirely constructive and supportive in ther sentiments but nonetheless quoting or venting negative thoughts. I do see how hard it is for you.

FredWorm · 08/05/2009 07:24

I guess the thing is that non-ASD people's conversation is so erratic and spontaneous that we wouldn't actually be very good at pre-analysing it into the components that might generate a warning. You would probably be better at using the device! Some people would do it out of the same generalised empathy that constrains all of their convo, but some would fail to do it. And it would only help you if it was reliable with great predictability?

amber32002 · 08/05/2009 07:27

Oh I'm fine with people venting about their personal lives and situations. That's never a problem. We all do that all the time on there

It's when it turns into a generalised debate with very negative general material posted up that it's more difficult for me.

If people have better/different ideas, I'd love to hear them. I'm sure this is a problem for any message board anywhere, so we could be solving a situation for the whole internet!

And a board where more people feel safe is better for mumsnet, because more people means more clickthroughs and more revenue and more good publicity too.

OP posts:
amber32002 · 08/05/2009 09:22

About the private boards...

Taking the example of another major internet message board site, they set up a private SN board to allow for sensitive discussion. Within a few months it was dead as a proverbial dodo because people were using the privacy, (out of the sight of public opinion that might have been a balancing factor), to undermine the other posters and be very controlling of them.

Much depends on how you're hoping to moderate such a board, I guess?

Are you able to say any more about the plans, Justine?

Currently the SN header reads:

"Please be aware that our special needs area is not a substitute for expert advice. Whilst many Mumsnet members have a specialist knowledge of special needs, if they post here they are posting as members, not experts. There are, however, lots of organisations that can help those who have children with special needs, so if you feel you need some expert help, please click here for some suggestions of who to contact. If you have come across an organisation that you have found helpful, please email their web address to our webguide manager here. Many thanks, Mumsnet Towers."

Would it be possible to add in a line about posting with respect for those that have particular disabilities, and linking to a general page of top tips for posters?

OP posts:
themildmanneredjanitor · 08/05/2009 09:28

This reply has been deleted

Message withdrawn at poster's request.

ChopsTheDuck · 08/05/2009 09:38

Amber, you've stated that the issue you have is with generalised material rather than personal venting. So surely all you need is for a warning to be placed on quoted or linked material that may be of a controversial or upsetting nature?

That might be a little more realistic and attainable than posters trying to consider whether every post may be of an upsetting nature to an individual like you who as you said, is a very particular disability that might not be understood that easily.

I also think that it is beyong the scope of MN towers to initiate this. After all the thing that makes mn great is that it is mostly uncensored. Perhaps a post on the SN board to request warnings would be sufficient? It could be kept bumped. You are a very wellk respected poster on the sn board and I'm sure posters would be happy to consider your needs at a reasonable level.

amber32002 · 08/05/2009 09:39

Yes, I agree with you totally TMMJ, which is why I said that I understand and accept that.

But, how best to explain...

I have 900 churches to look after for disability accessibility. Some are historic buildings that can't have a ramp installed or a loo installed, and the church wardens sometimes realise that to put in those things would mean such cost and disruption that it's not worth trying.

So they maybe tried nothing at all, reasoning that if they can't make it perfect, it's not a good plan.

But if they could just put in a few cheap easy things - maybe paint the doorways a different colour so those with a visual impairment can see them better, maybe buy a couple of large print books, maybe a portable wheelchair ramp that costs a few hundred rather than tens of thousands, it would help some people some of the time?

Helping some people some of the time is a really good start.

We don't have to despair that we can't get all of it right all of the time.

I'd be happy just to think that we've at least alerted people. If they still want to say or post things that I find difficult, well at least we've tried? I really don't mind people debating what they want to debate. It's me being able to avoid as much as I reasonably can that would help me. I know that the people on the SN board want to help, but as I say, it's new people who may not realise, and we're not yet helping them to realise.

Er, does that make sense?

The post at the start of this thread said the lady that is blind asked if people could at least try not to use symbols in the header, as she found it difficult to read them, and they did.

That's a good start too?

OP posts:
ChopsTheDuck · 08/05/2009 09:39

*well not whellk!

amber32002 · 08/05/2009 09:41

Chops, no, I've not asked at all for people to stop debating or that they always have to consider me when posting.

But if I knew I had a person on the board that was in a lot of pain if I did X, I'd want to at least try to be aware of it? Wouldn't most people (guessing wildly, due to no useful Theory of Mind)

OP posts:
themildmanneredjanitor · 08/05/2009 09:42

This reply has been deleted

Message withdrawn at poster's request.

ChopsTheDuck · 08/05/2009 09:49

Yes, Amber but we don't always know what x is. I think that is the issue.

Earlier you seemed to be saying that x would be linked or quoted material rather than personal posts, which is why I thought might be easier for us to judge as potentially upsetting and forewarn about.

TotalChaos · 08/05/2009 09:54

I think "trigger warnings" to post can be workable (have seen it work on other sites for posts about sensitive issues such as self-harm, abuse etc), but probably more as a posting convention than as anything enforceable by MN. I think warnings about links/quoted materials/"poems" on the SN board would be a workable convention.

macwoozy · 08/05/2009 09:57

If there were to be a warning sign stating that we post with sensitivity with the knowledge that there are people with the disability on the SN board, it would have changed the way I have written over the years. In that, I wouldn't have felt so freely to write about my ds's disability and the shit that comes with it. I would constantly be fretting that what I write might upset others, so my post wouldn't be a true reflection of how I was really feeling. IYSWIM

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