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)

[morningpaper]

Hmm I think macwoozy has a good and valid point. The SN board is going to occasionally include this sort of material by definition, I would have thought?

I also think that there are lots of people with "trigger" topics - surely part of learning to manage your condition/state of mind/phobia is to accept responsibility for self-management when it comes to trigger topics?

[amber32002]

Chops, I still am saying that, because that's what sets me off - the generalised totally negative long things.

I'm not trying to get people to warn that they are ranting. They rant all the time. I've never once minded it. It's honestly not what I'm saying.

TMMJ, triggered autism-spectrum-panic of this sort is something that affects at least 60% of the half a million of us in the UK. A lot of it perhaps stems from relentless bullying of us, since we have four times as much bullying as those who have a physical disability. The anxiety/fear/panic/help! systems in our brain are already hotwired for panic, and by the time we've been bullied by people elsewhere for years, we're generally very likely to be unable to participate in aggressive discussion. This is a very well known part of autism. It doesn't apply to all of us, but it certainly does to at least that 60% of us.

It doesn't mean people can't have an aggressive discussion, but it does mean we need to be able to find a way to join in that works for us, or remove ourselves from the situation. Otherwise our voices on topics that are important to us are unheard, and our ability to join in and get support is affected because of our disability.

So, it's not just for me, no. If mumsnet has say 10,000 people on the site, there must be around 100 people with an ASD and 60 of those would have the same problems I do. It's just that I'm the one who puts her hand up and says "Please Miss, can I ask for a little bit of free help?" rather than just leave mumsnet.

The trouble is, if I report something I find particularly scary, what I tend to get is a mumsnet post back saying that they don't find it scary, so it'll stand anyway. So that definitely doesn't work as a system for me. I think I was hoping they'd use it as a way to help identify what did or didn't, so they could help others, but not yet.

What's probably needed is a mumsnet autism moderator training session, which can be arranged free of charge. That would help them shape something that works?

[amber32002]

Macwoozy, what on earth would you write that I would be offended by? You've never once written anything I would be offended by, so I'm not at all sure why you think that a polite gentle reminder to those that would do so would infringe your rights to say what you feel about your own life? I'm very confused by that?

[BoysAreLikeDogs]

there aren't any mods here to train

[amber32002]

Morningpaper, when I'm on mumsnet, I'm already taking a huge degree of risk for myself so that I can join in.
I don't ask people to drop the visual imagery that I find difficult.
I don't ask people to re-explain all the terminology that my brain won't process
I avoid wherever I can anything and any board that tends to be too controversial.

Blimeys, I do everything I can to avoid causing any problems for anyone, honest.

[morningpaper]

Amber I think what macwoozy is saying is that, if she has to worry about upsetting/triggering someone ELSE with SN, then it might make her think twice all the time. I think it must be hard enough thinking of the needs of someone with SN in the home environment, without having to constantly worry about it on the boards as well (that isn't meant to sound wildly mercenary - just that the nature of the SN boards are surely to provide a sounding board for carers, and part of that will include a lot of frustration?)

I think it would be helpful if you could come up with some possible practical solutions. Have other boards come up with any, that you know of?

[pagwatch]

I said this on the SN board. The problem does not EVER seem to arise when individuals post personal views and experiences - regardless of how raw difficult that posting may be .
The problems arise when someone posts something that is supposed to be clever and meaningful and attempts to define the experience of living with disability.
this is exactly the case with this discussion.

I just wish people could be reminded that everyones experience is different and that cutting and pasting some deep and meaningful dirge about the nature of autism or somesuch is never productive and always offensive to someone.
Could anyone craft a line in the header to say the purpose of the board is to support each other and that navel gazing musings are seldom helpful.

( i suggested No Crap Poems but no sure that was cutting it with anyone )

[amber32002]

But we dont have to make a long list. What I was asking for was a general line at the top of the page asking people to bear in mind that there are a range of disabilities present, which would link to a place where people can choose to find out more.

I'm honestly not trying to sue anyone for getting it wrong. If they want to rant, ok. If they want to ignore the warning, ok.

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?

The DDA does say that we're supposed to at least try to help people with disabilities to join in with a service?

[morningpaper]

No Crap Poems sounds fine to me

[amber32002]

Morningpaper, the practical solution is for mumset to accept a bit of training on disability awareness for their 'moderators' (wrong word, but it's the people who press the delete button on rude posts).

They could alter the heading to gently remind people that there are a range of mums with disabilities present.

Er, job done?

Cost - nothing.
Censorship - none.

[morningpaper]

I think we need a GENERAL No Crap Poems part in the Terms and Conditions, to cover the whole board to be honest. Who has ever been helped by a crap poem?

Amber, good idea about external links to find out more.

[morningpaper]

Amber, can you clarify why you think the mods need disability training? Where were bad decisions made that could have been better made if anyone was better informed?

[amber32002]

re the cr$p poems

I'm not doing a very good job of explaining this, am I?

This is the trouble with having a communication disability

[pagwatch]

"Who has ever been helped by a crap poem?"

so true

[morningpaper]

asking for was a general line at the top of the page asking people to bear in mind that there are a range of disabilities present, which would link to a place where people can choose to find out more.

Do you mean links to external websites or links to an MN article about this sort of thing?

[morningpaper]

Amber you are doing just fine

I am just being the man and getting all practical

I will probably put some shelves up in a minute

[amber32002]

Not exactly bad decisions, no. Bad for me, yes, but they can only decide on the information currently available to them. Decisions that are made because maybe there isn't an awareness of the level of problems we can experience?

I know they do a brilliant job overall, but if someone says "help! because of a disability, it's difficult when the response is "maybe you just need a break from mumsnet" or "it looks ok to me". Not the exact words, but those tend to be the answers.

Short of hiding permanently in the mumsnet tea room, I'm not sure what else I can do to help more either. If there are things, I'll gladly try.

[FredWorm]

But surely the SN board does already have a very great degree of sensitivity about disability. Conversation there is by people who have great knowledge and supportive attitudes. Everyone is aware that there parents of children with all sorts of special needs and for that reason alone they would not be casually offensive about any disability -- even if they weren't specifically thinking about the posters themselves having a disability, rather than being a carer.

When that ethos of sensitivity is broken, the post is challenged by other posters, or addressed by MNHQ if necessary.

A warning wouldn't add much to the already-existing ethos would it? Or if it did go beyond that ethos, it would be excessively constraining? The difficulty is that this is a conversation site. And conversation is perhaps intrinsically challenging for someone with autistic characteristics. You can't eliminate the difficulties, because they aren't all extraneous -- in the same way that a wheelchair-thwarting step is extraneous to the essence of a house, or the use of certain speech-recognition-software-thwarting symbols is extraneous to the essence of chat.

(And likewise, somme communication difficulties are there for everyone,. We all have times on MN when we feel utterly crushed and paralysed by a thread.)

[morningpaper]

I am trying to see your point of view but I'm struggling a bit with this issue of moderation

the nature of MN is that it self-moderates

That is what sets it above the rest, almost by definition

[pagwatch]

amber

you are explaining really well it really is just a difficult issue. This occurs in so many areas of the board and there will be people posting who are depressed or grieving etc who face the same challenges - how to visit and gain the support they desire and deserve without having to face issues that their situation makes upsetting for them.

It is an ongoing problem and sadly 'take a break' is often the adive - but on a multi purpose open forum that sometimes is going to be tha case. Thats why I come here but have 'closed' groups ( ie members only) much easier to be confident who your peers are iyswim.

I don't think anyone is indifferent to the issue but people want to maintain the flexibility and accessibility of a large open board.

I find many posts on MN difficult all the time ( not in the same way you do - I am not comparing the too) but I off set the negative against the amount of info I glweam here and the support of others. Often these difficult threads are incredibly instructive and ultimately useful.
That souns as if I am dismissing your anxiety which I really am not. Just trying to explain why people want to maintain maximum posting freedom.
I also get huge comfort from the supporting posts and how often 'offensive' views are robustly challenged.

[amber32002]

TMMJ, if mumsnet cannot find a cost-effective and reasonable way to help me, then we'd both have to agree that the site isn't the place for me.

But the incidents are rare, and the support I get here is so important for me

The thing is, I can't join in the real life support forums because I have a form of autism which means I can't handle the social interaction, body language, etc. So an online forum is a lifeline for me.

If I have to leave because I have this disability, I'll be very but I do know that others really do need to be able to rant and I am honestly not in any way asking them not to do so. I wish I knew how to make that more clear, because somehow I'm failing.

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.

That's the difference.

[morningpaper]

Amber, are there posts like the second example? Surely lots of people would respond and moderate that themselves? How do you think MN should respond to the second post?

[pagwatch]

morning paper

it is a line from the aforesaid crap poem.
I don't think there are many like it TBH