dear mn hq why are so many disablist threads being left up

[Samcro]

one today for instance and mn hq post
"We don't think that this thread is disablist, it is a valid discussion that we don't think should be shut down. "

yet it has obviously been reported.
cause hurt and upset
how is that making life easier(or better) for the sn community`?

or this message from mn hq
That CBeebies is just far too PC
Thread deleted
Message from MNHQ: Thanks so much for all the reports about this.

Although there has been some interesting debate and discussion, we do agree that the OP and some of what ensues is disablist, so we have decided to delete.

how can these be interesting debates??
\not long ago mn hq said that they were going to be quicker dealing with this stuff
what happened??

I have seen parents on mumsnet unhappy about a diagnosis and asking for advice. I wouldn't want them not to be able to do that.
It's very different a parent posting to query a diagnosis of their own child, than it is to question the validity of a diagnosis given to another child.

They often diagnose on the balance of probabilities.
No they really don't. There are lots of different factors taken into consideration and looked at in great detail. Where a result is borderline, they generally tell the parents to come back in another year to see how things have changed.

Firm diagnosis beynd doubt is rarer than many people think
This is just so unhelpful and so misleading. Beyond all possible doubt - maybe, but that's pretty irrelevant. They are as sure as they can be, and it's the qualified medical professionals who have made the decision, so it really isn't for anyone else to question it.

Polter, that is perfect!

yes sadly this thread is no longer about mn hq leaving up disablist posts.

Yes Polter that is excellent. MNHQ have constructed a excellent general comment posts where they are concerned about 'posters giving more of themselves than they can afford' and also excellent ones for people dealing with a mental health crises. I think the best we can hope for is something similar on any post where a disability is being discussed as a 'controversy' Are people really clicking on the link to the 'this is my child' campaign when they put it up. It is better to have a post. I do think though that once that post goes up MN needs to be proactive when posters cross the line.

I do think MN need to look into it though because every time I see one of those 'benevolently ignorant' posts a little bit of my heart dies for my son's already bloody tricky future.

YY.

Come on MNHQ. How can we tempt you over to talk to us? Gin slush puppies?

It's this type of comment that really upsets me. I just don't believe a word of it, but it perpetuates the myth that autism is easily faked and the number of people faking is high.
I have reported it but I'm pretty sure that this is one of those ones that MNHQ will allow to stand.
Posts like this cause harm.

That's a disgusting post

God, that is a bad one.

These people are never prepared to back up their unlikely stories with even as much as the name of the LA though, strangely enough.

Need that is a disgusting post but I can actually believe a SENCO has related it to the poster.

I had a SENCO who I believed tried coerce me before into lying to the professionals assessing my child when I asked about some forms I had to fill in. She did not get very far as I was only prepared to tell the truth in order to get an accurate picture of my DC's needs.

think, maybe more in the past as this was some years ago when funding was different, some educational professionals were plainly most interested in funding first and foremost. When it is not there, they then become more interested in denying some very real additional needs.

I too, hate the term PFB.

Samcro I agree, it is being derailed quite a bit. I've contributed to that. Sorry! It's quite disappointing though that MNHQ haven't actually addressed your original question (I don't think they have, have they?).

Jason - You asked about how long that 'horrible' post was up for. It was up for about an hour. I wasn't on when it was written and went back through the thread to have a look and I can remember making a comment about it being still there. I reported it and when I looked again, a few minutes later, it had gone. There were posts after it already deleted when I checked the first time.

With those sort of posts I don't think the poster is necessarily even meaning to be disablist and think they're merely recounting a story that's happened. The trouble is it's normally an 'I've heard' type of thing, never a direct experience, and they probably heard it on the internet in the first place.

So even if a few crazy people somewhere have tried to fake their child's disability the story doesn't need sharing on the internet as it creates an incorrect perception of a wide-spread problem. That then further fuels the fire, with the fake stories get bandied around even more, lots more people believing and re-telling, and the whole thing exploding in a way that only hurts those with disabilities (because a lot of readers notice and remember the one 'fake' disabled story in amongst thousands of opposite ones). And it's all propagated by lots of people who think they're just re-telling an interesting 'well actually, it did happen to my neighbour's half-cousin's daughter' story.

That was a bit of a ramble but just tyring to illustrate the need to address such comments as the one that Needaglass posted, because they don't always come across as intentionally hateful. but they are indirectly disablist (I realise nobody here is defending them right now but it does happen lots).

MrsFizzy im walking away now.
i can'r contribute to a thread about autism.
i feel bad as this was never just about one thread.
but this has become all about that.
so really nothing for me to contribute

Hi all,

We wanted to clarify about the post mentioning Down's syndrome made by me on the previous thread.

It does seem to have been read as it was not intended and for that, I apologise. We did not infer that any disability is more or less 'worthy'.
Below is the post in full, it was meant specific to a thread talking about labelling:

Just5minswithDacre
Those who do not have any experience, may well have no idea. If the OP had posted to goad or inflame and not a genuine enquiry, it would be different but she asked a question that is not common knowledge for many, she was given a clear answer and she listened.

Shutting down discussion would not be helpful to anyone in this situation.

There's an easy test RebeccaMumsnet for anyone struggling to grasp the very simple and patently easy to grasp fact that Autism is an unchanging disability with a physical cause, and it's this;

Would you say/ask the same about Downs Syndrome?
Would you say/ask the same thing about Visual Impairment?
Would you say/ask the same thing about severe Dyslexia?

NO? Well then it's not acceptable to say it about Autism.

Just not acceptable.

The question in this instance was:

ivyonmywalls
A close friend has informed us that after lots of tests, her son has aspergers and it got me reading about it online. As I've been reading up on it, I've come across adult signs of autism and it appears I have some of the milder traits. A lot of us probably do!

It made me think, that If I had been born now, instead of nearly 50 years ago, I would almost surely have had a label of Aspergers given to me, which I would then have had to live with and carry for the rest of my life.

if I do have it, according to the list it's very mild and hardly noticeable and I think a label would have been more of a hindrance than a help throughout my life.
Obliviously in the majority of cases, a diagnosis can bring lots of much needed help and support and I think that's great.
But what if somebody has a very mild version? Is it right to label them and put them in a 'category'?

Wouldn't that be a burden? Especially if they didn't ask or want to be labelled.

This applies to all labels given to children.

It is not possible to substitute with Down's syndrome in this case as, please do correct me if I am wrong, but Down's syndrome is generally identified and diagnosed in infancy.

You could ask the same about visual impairment and Dyslexia, although not severe as the OP does state But what if somebody has a very mild version?

Your questions are very good barometers to judge by and I will share your post with the team, thank you.

The formatting is incorrect as you can't copy and paste quotes, sadly but for clarity, the italicised copy is that of MNHQ.

We could have been clearer and we apologise that folks have taken it the wrong way. We simply meant that Down's Syndrome could not be used as an example in this specific instance as there isn't a similar diagnostic process and that is what the thread was about.

We are very aware that Autism is a life-long disability, however, this post was specific to the thread and regarding the diagnostic processes and in response to Just5minswithDacre post about testing what we had posted by substituting Autism with other disabilities.

No offence was intended and I apologise if we upset anyone.

Samcro don't leave the thread. It is an excellent thread and an excellent question. Disablism in a lot of cases is simply plain and simple ignorance and MN are struggling to handle the huge issue of ignorance on disabilities.

We always talk about education being key to any form of ignorance but I think in the culture when people think their opinion is as valid on any topic as anyone elses it can be really difficult to educate. This is where moderation is crucial. On a site like MN being moderated is having your gallop halted. It is not just a random 4/5 posters who think you have gotten it wrong, then there is always that other person who defends you no matter how outlandish you are being but MNhq think you have it wrong too. That can hit home way more than other posters comments and this is why I think MNHQ need to be more proactive. The additional vulnerability of many people with disabilities means that MNHQ should be taking even more steps forward in this than they are already taking.

MN is a microcosm of the ignorance people with disabilities are facing on a daily basis which is really sad but at least we can get battle ready I suppose.

"We simply meant that Down's Syndrome could not be used as an example in this specific instance as there isn't a similar diagnostic process and that is what the thread was about."

But it wasn't about the process, it was about the value of the label/diagnosis.

If you take it as fact that the OP has undiagnosed autism purely because they were born at a time before it was diagnosed...then there will have been a point where the same is true of someone with Down syndrome.

The following discussion would then be of whether it would be valuable to change whatever diagnosis/label/lack of diagnosis that that adult had to Down syndrome because they were doing ok and surely having the diagnosis of Down syndrome would limit them.

So either you're comfortable with changing the disability or, you're saying that there is in fact something to debate about whether autism is a valid diagnosis.

We could have been clearer and we apologise that folks have taken it the wrong way.
Taken it the wrong way? I didn't take it the wrong way, I took it the way it was written.
Several examples of other disabilities were suggested. MNHQ picked up on ONE that they felt didn't fit the original question. If it was replaced with "visually impaired" (as was suggested and as I posted on the original thread), it shows how ridiculous the question is, but this has been minimised with the whole "mild version" myth.

The whole concept of it being acceptable to debate "labelling" children who have been diagnosed with a medical condition, is flawed.
Whether a child is diagnosed as Visual Impaired, with Down's Syndrome or Autistic, they have a diagnosed disability that is not open for debate. Whilst each condition covers a wide spectrum of how the child is affected, if it was that mild as to hardly affect them at all, they would not have been diagnosed.

I think you should consider the wording contributed to by a number of posters up thread

disabilities are only diagnosed when health care professionals are sure beyond doubt of the diagnoses, We do not believe it is acceptable to question the validity of a diagnoses on these forums

To be honest Rebecca I really don't think your post was/is appropriate for the reasons given. A diagnosis is not up for a controversial discussion and it is not labelling. The whole premise of the thread was disablist.

As the OP has come back and said on numerous occasions though, this is not a TAAT. There is a wider issue at play here. Under the guise of discussion either very disablist or ignorance that is tantamount to disablism is often left to stand on threads. It is a particularly low blow when you have a disability or a child with the disability in question when these issues arise and MN do actually need to to be more proactive.

disabilities are only diagnosed when health care professionals are sure beyond doubt of the diagnoses

That just isn't true. You can't ask MN to say that.

I like this wording:

Mumsnet welcomes, supports and encourages people with disabilities and additional needs to use this site. This means that we will not tolerate posts or posters speculating or challenging the validity of medical, mental health, neurological or other similar conditions and diagnoses. Members are asked to consider the impact of their posts on people living with such conditions and diagnoses before posting. Posts which appear provocative will be deleted.

I think it covers it nicely. That, coupled with deleting any crappy posts immediately rather than letting their message be debated ad nauseam should do the trick.

When a diagnosis is made, it's not ok for others to question it, particularly when they're not qualified to carry out assessments and diagnose any medical condition themselves, and if they are qualified, I would assume they'd know better than to spout shit on MN, or it rather puts their credibility under doubt.

That wording was Polter's btw.

disabilities are only diagnosed when health care professionals are sure beyond doubt of the diagnoses

agree that as this is not true, there are lots of disabilities where there are no confirmed diagnoses, there are disabilities where a person has a clinical diagnosis - despite genetic tests not showing up an anomaly. I understand where the assertion is coming from, but it can not be said to be an accurate statement.

"Mumsnet welcomes, supports and encourages people with disabilities and additional needs to use this site. This means that we will not tolerate posts or posters speculating or challenging the validity of medical, mental health, neurological or other similar conditions and diagnoses. Members are asked to consider the impact of their posts on people living with such conditions and diagnoses before posting. Posts which appear provocative will be deleted."

I like this, plus add on the usual "here is a link to TIMC which covers some of the frequent disability myths"

Rebecca, I am right (aren't I?!) thinking that a thread discussing the validity of someone using a wheelchair and saying "I get a bit tired and sore, maybe I need to use one" would be deleted, wouldn't it?

I have no issue (and have posted on many similar threads) with anyone seriously wondering if they are autistic. But the navel-gazing AIBU approach looks a hell of a lot more like my wheelchair example to me.

"Rebecca, I am right (aren't I?!) thinking that a thread discussing the validity of someone using a wheelchair and saying "I get a bit tired and sore, maybe I need to use one" would be deleted, wouldn't it?"

The thing is though that IMO it was worse than that, it was, "I get tired and achey but I manage and I don't see how a wheelchair would help me, so maybe those people using wheelchairs would be better without one too"