dear MN HQ could you please be so kind as to explain to me publicaly why you allow thread like the super race one

[saint2shoes]

to continue? IMO it has some very offensive posts on it, but you still have not pulled it.

Mt to be fair Onegar is not struggling with a a decision, she is making a statement about a hypothetical situation, there is a big difference.

MT I WILL look at those links later (have a 2 minute MN window whilst ds3 who is skiving was sent home from school is using his potty LOl; but can I without being antagonistic haul you up on this:
'They need your help in getting the positive message about disablity over to the mainstream. People without imparments or family members with imparements just have other things to do with their time'

COz sometimes the very people who are expected t do this work just can't- we've got too much on! There's a reason we get carers allowance etc and that because compared to the other famillies we usually even more to do with our time; plus the general constant sleep deprivation and wory that being an SN arents carries with it. SOmetimes we can't be the educators or the rational ones. Sometimes all w care about is sleep (specifically today fopr me- hourly all night, had all 4 in my bed in the end). We can go about teaching and sharing and that's fab but sometimes we can't.. Sometimes we're regular aprents with too much on our plates IYSWIM?

Actually that has been a side effect of some of these thteads: I found today I needed a rant in SN about generally being exhausted etc and I can't, because I worry that people will see it and not read it in context but as evidence that having a child with SN ruins your life (threads relating to an article claiming that were on a few weeks ago) or my life would have been better if screening had allowed me to abort (even though I never would have). I worry there's a Mum making that decision today about whether t terminate and who will never have met a person with the condition her child has, only read my message about how shattered I am....

I guess that in a nutshell is where it comes to for me. I did say it on the original thread but it got buried:

I am pro screening but only if people are enabled to meet people with sn (not just in school integration because that often is counter productive when it fails, but in social sits, hobbies, inter school events that I never see here certainly) from ayoung age so that people can learn the positives, and also HP's reduce rpessure on aprents to take action if screening comes back positive- the pressure I was put ounder when ds3's bloods came back high risk DS was very intense. that's wrong IMO; parents should be left to choose for themselves and offered genuinely impartial advice if they ask.

From my own experience there was a child in my calss with severe CP and taht totally normalised SN for me. But of course he ahd adequate support to maximise his own chances too: if he;d been left alcking a 1-1 it would have had the reverse effect perhaps? Which is an efect of alck of support really whci seems to be growing now (only seen an overview of SS review out today but that said less poelpe qualified for support- I know we don't so lots of left-t-cope people out there)

Anyway back to the waffling again and ds3 is back for his adored PC!

I'm not of the get rid of threads camp tbh: wouldn't have done my whole uni time if I hadn't have beleived education changes things (albeit that racism / inter religious tolerance) but I think MN has a too black and white attitude. I don't think the phrase super race should have been allowed to sdtand without MN requesting (and publishing) confirmation that the OP knew the history of the phrase. If she didnt they should perhaps have asked her to modify that. the title 'AIBU is thinnking that screening would give people more chance to reduce the suffering of the diabled' would ahve spraked debate: super race is a phrase inextricably linked to eugenics and the whole Nazi usage. That may be a shame but that's reality. You can't really expect people to read it without thinking back to a time and country where disability was a reason to kill a person (isn't there a memorial service this week in bristol for the other- than- Jewish groups targeted by the Nazi regime btw?)

There is a palce for debate but that has to be used with balance and consideration rememberingt hat we are not nameless PC's but real people on the end of these computers.

Which makes me think of another thing: if we believe that racism and disablism are equally damaging (and I do) we should at least consider that a thread about removing black people using the phrase super race would be possibly illegal under the Racial and Religious Hatred Bill (2005); until disabled people have similar protection we will always be on alert and feel that ourselves or our loved ones are a less- cared for group at risk in society. Debate is good but only in a protected environment with rules: there do not seem to have been any rules or restrictions in place here. Too worried about whther someone is a Rev even though nobody is harmed perhaps? It can feel like this.

Anyway a prediction: the SN crowd will be alienated and then a hge amount of shred info lost. And it would be wrong to ask poeple to keep posting for educations sake if it diorectly ahrms their own feelings and even upsets them.

That's just a guess mind, nothing more.

God I talk Bollocks [busk]

I'd go back to my knitting but I fucked that up too

Got a deadline today but am not ignoring you Peachy and Lenin. Speak soon

By Monkeytrousers at 9.57:

"Amber, no one wishes you didn't exist"

Alas, not so.

Examples from the super race thread:

"I'm thinking that breeding out illness and disabilty is a great thing. ?

?In societies the weak are left to die. ?I don't think the value is as high in economic terms certainly. ?it's not such an effective child if it can't see or hear. It won't keep a family so easily. It wont' be so easy to do things with it that you might have wanted to do?.

" i think the UK would be better off if few children with disabilities were born and also it would be nicer for children too?. I don't want them educated to think it's just as good to have a deaf child or child without legs who are just different?."

"Yes I'm saying we are better off if people aren't deaf or disabled. ?if we can procure they are never created then that's a good? ?

etc etc

Ok well, this is a scary thing for me to post as I feel (quite rightly tbh) like an utter twat for ever having had this opinioin. (I know it's slightly off-topic as well)

But I am one of those stupid, ill-informed people who previously assumed disability = pain and suffering.

I always assumed I would abort a baby that would have any sort of 'life-limiting' disability.

I assumed I would rather be dead than disabled.

I think it is an ignorance thing. I have never had much contact with anyone with any sort of disabilities.

All of you here who are coping with disability in one way or another, be it your own disability or your child's disability, have shown me up to be a bit of a tosser as far as my (previous!) opinion on this matter goes, and I am truly very grateful for having my opinion changed in this way.

I'm seriously quite ashamed to admit to this, but I sort of want you to know that you are informing people and changing opinions, so all these posts are not wasted effort, iyswim?

Mindaline thank yu

but you are not a tosser; a tosser is someone who refuses to change their opinions even when challenged and given alternative.

You were developing a viewpoint- nothing more.

Don't think badly of yourself.

Aye, seconding what Peachy just said.

No Peachy, thank you, and the rest of MNers with disabilities in their families, for showing me the alternative view

(That sounds v cheesy but is true - I actually have a smashing job now working in a residential unit for people with severe physical disabilities - I don't think I would even have considered it if I hadn't learnt so much from MN by the time it came up last year)

It's a perfectly good question, leningrad.

The quick answer is 'every significant disability', but that is a fuzzy term isn't it.

Let me say for those who might not know, that I am a man. So I am not the one who has to go through the termination and start over again. There will be feelings that I cannot experience directly and cannot possibly imagine.
In fact no one on the outside is qualified to make that decision. This is why I'm in favor of it being the woman's choice in every case with no pressure either way.

Also in practice you are working on probabilities, so while I'd certainly be in favour of terminating if there was a 1 in 5 chance of a major problem that would mean constant operations and pain, I would probably take a chance if it were a 1 in 5 chance of a very minor problem.

Imagine though that we're talking about some kind of IVF conception where there are dozens of possible fetuses and imagine that some computer could show how each would turn out at birth. I would pick the one with no disability at all.

Every conception chooses one and discards the rest. 1000s of potential children are rejected who would be just as loved and lovable if they had the chance to be born. The difference is I'd make it the mother's choice and not the roll of a dice.

It's about wanting them to have the best life. We'd love a child who couldn't read well or climb trees, but we're pleased when they can. That's why we buy them books and take them to the park. It doesn't mean we hate adults who cannot read.

We seek to improve their life. We want them to be happy, have friends, a career, a partner and children of their own. In an uncertain world where anything might happen we want to at least start them off level with everyone else.

We can talk about changing the world to make it comfortable for everyone with a disability, but that's just not possible. We can put ramps in everywhere and that's good, but if the ball gets caught in the tree you have to ask someone who isn't in a wheelchair to get it for you. A disability is a disadvantage. We can minimise that as much as possible, but it's still true.

I can think of more and better examples, but I'm trying to avoid mentioning specific disabilities so as not to upset people.

We all have disadvantages though don't we? I mean I couldnt climb that tree. And I am shite at maths.

There's also a risk that by seeming to place a greater emphasis on the value of a disbaility free life (selected conception etc- let us not forget that taking the IVF route is very definite: it's a huge message of commitment to a cause) we will negatively affect the treatment and support vailable for anyone who becomes disabled later on, as many of us will as we age.

I don't have an issue with choice at concption although not for me; the termination laws atm make me seriosuly by definitions of serious disability etc.

What is a serious disability?

It's not an easy question: ds1 with AS is more severely disadvantaged than ds3 with asd and thats recognised by the DWP for DLA payments. A albel predicts very little at the moment.

Monkeytrousers, I followed the link and watched Hope Springs just to see what it was about. It did have me wanting to know what came next which is the essential ingredient in my opinion.

I will look at some of the others when I get back.

Ours did though, we had several calls from MW, then when we agreed to counselling it was in fact an appt for amnio and we actually packed up and ran away!

Course he didnt have DS; he has ASD LOL!

Can't stop, but yeah I put the odds badly. I just meant if it were very "likely" to be a serious thing or equally "likely" to be a not so serious thing and I plucked figures out the air

(Apols for mega post in advance)

Yes, Peachy, I do accept that carers are on call 24hrs a day. I used to be a carer myself (though not 24hr shifts) and I wasn?t trying to make light of the exhausting job being a carer is.

The real reason my friends don?t want to watch isn?t actually because they are too busy. It?s because they think they are going to be lectured and guilt tripped rather than entertained. It?s the legacy of the million charity ads that proposition us every day maybe in many forms ? guilt and pity being the main strategy for them all to get us to notice them. Shoot Your Mouth Off (SYMO) specifically avoids this approach and actively produces stuff to infiltrate the mainstream and especially young people ? who are also statistically the people who are more likely to deride or assault people with impairments. (I?m paraphrasing their mission statement).

SYMO isn?t asking the SN community to be the educators, just that they get behind the cause, so they can carry on doing what they do best.

I know many people with impairments are a large portion of many forum members. The internet format is perfect for people who have mobility problems. It allows them access to a diverse range of communities that just wasn?t possible before. They can join in at their convenience and don?t have to go home if there isn?t a lift to the bar or cinema, get hassled by a taxi driver, or mocked by the chav on the way.

As well as forums though, we could ask them to get behind SYMO. It?s another form of entertainment and is specifically for the disabled community. All that they ask you do to is watch, comment if you want, and pass it on to others. Because if the disabled community can?t get behind a cause and make some noise about it (which we know they can do if they choose ? who will??

You can pass personally, of course you can. There?s nothing worse than feeling obligated to do something. But you could pass it on to others maybe, who might be interested ? and let them know the message and how much it means and more importantly, what it could mean for the disabled community and their families. If we want to promote positive messages about disability to the mainstream, this is one of the best opportunities to do so.

I agree about impartial advice ? but that cuts both ways. That would include meeting people who didn?t regret having a disabled child and also those that did ? those who were prepared to say so anyway. That?s impartiality. As is walking away and leaving people to make their minds up.

I can see why ?super race? is offensive. By contrast, what does that make people with impairments? Part of the nadir race? But it is, unfortunately a phrase that is used in the media all of the time. It doesn?t help to make people sensitive about what is implied by those not deemed ?super? I know. Most people get it from the media though, not nazism.

But also ? who the fuck is super? The race would still include all of the fuck ups and idiots even if genetic diseases could be screened.

I think there is a difference between screening for certain genes that cause impairments and removing those genes from the sex cells or fetus ? and making a huge jump to interpreting this as wanting to ?remove? disabled people from society. This technology is fundamentally a humanitarian project, looking to improve peoples quality of lives. Removing undesirable people from society is a different discussion. I think. They may be linked. But they are not the same and one need not lead to the other.

There is a minority of people who have blatantly prejudiced views about disabled people on this thread. I don?t know if the last three comments Amber posted below constitute malice or ignorance. The road to hell can be full of similar intentions as the ones voiced in there.

What I know is they are still a minority and we shouldn?t forget that. There is actually much to celebrate on the thread with the challenges of such opinions. If you delete the bad, you also delete the good. So I agree with MN for letting it stand., FWIW.

Anyway, I?ll fook off now. Sorry, I?ve made such a massive boring post, but I wanted to respond to you as fully as I could.

2 things, bing a carer is different than being a parent
and what do you mean by inpairment? (sorry not a word that I have heard used before.)

I think leningrad is right

You do have to pick your battles; there are too many to fight otherwise, simply that.

Agree about the guilt- am so proud of the campaign by Macmillan (ex employer) which seems to target differently atm. It's affected their fundraising mind- because they offer support rather than ask for help they seem to lose out a lot on egacy fundraising etc.

Anyway.

I thinik my mega post was longer than yours

Truth is I am happy to fight it out on MN becuase ime 99% of netters care. But RL isn't the same; for the vast majority coming on here indicates a certain level of interest in humanity. That's not necessarily the day to day experience of many people I meet!.

Byut not everyone here is like you and I - a practised fighter. And some will be in the x process; there may be some who learned today that their baby may be disabled. How we present Sn to these people is a big responsibility.

I agree about all sides of the story but my experience is that HCP's are very pro-termination for SN, and for many people HCP's are still held as knowers of all things (sadly).

Imparement is the most up to date PC word, 2 shoes. 'Disabled' has a connotation of not being 'able'. Many people are impared however by many things and its seen as less divisive, less drawing a hard line between the 'able' and the 'disabled'.

Not going to read thread as feeling calm and lovely this am but just wanted to do huge to Monkeytrousers.

I disagree with almost everything you say but have no personal issue with you at all.

Just in case you wondered

( reference about 10 zillion pages ago

No problem Pagwatch.

I'm not sure if I do disagree with what you say actually. I just wonder that many of us are talking at cross purposes. But thats probably the limits of forums with cross posts, people not reading whole thread (which they cant be expected to do, I think) not enough time to think things out properly. Its a raggle taggle way to discuss stuff, but it's a sanity saver for me non the less.

MT - I think your last post (and have read through most of this thread carefully) points to an added complication to all this discussion. Many of us who do not have current and direct personal contact with some with a disability, find the topic incredibly difficult to discuss because of the language issue. It is not an excuse NOT to discuss or duck out altogether, but it is something that people feel embarrassed about and can cause unnecessary hurt/insult. For a while it was fine to say "a disabled boy..." then suddenly it was "a boy with disabilities.." was seen as more appropriate (naturally very logical and follow that), now you say that we should possibly avoid "disabled" and replace with "imparement". Without the grasp on the (seemingly) ever changing pc hold on the language and constant fear of expressing your opinion in sensitive and non offensive way, it does make the topic very hard for many people to be actively involved thinking and talking about. If I post on many topics, I feel I just express my opinion and take care to be as considerate to other?s feelings as possible. When commenting on an important topic like this, I feel like I am walking on egg sheels, checking and rechecking my posts as I feel I do not have a grasp on the language let alone the topic!

I wonder if the language barrier and worry about upsetting/insulting people holds a lot back from engaging and becoming better informed? vicious circle type thing? While I recognise a lot of people have happily expressed their views regardless of how it might upset others, I suspect there are a lot out there who would like to discuss and become less ignorant but just do not know where to start.

Not sure if I made any sense there - sorry!