"I may not agree with what you say, but I will defend to the death your right to say it." Voltaire

Earlier today a post was removed as it 'offended' some people. Was it racist? Sexist? Or any other 'ist' ?Homophobic? With us lot I cannot believe it was discriminatory against the disabled surely?? So why was it taken down dear administrators? If it was because some people may not have agreed with the views stated surely this is censorship based on personal views which in my opinion is wrong on a public forum such as this. Does this mean I cannot put a post up about my support of Liverpool FC, as all the Manchester United fans will be offended and report me? I look forward to your replies. Before this post disappears tomorrow morning :-)

40 Replies

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  • I read the post and replies last night in tears as it summed up how I have been feeling especially over the past year when I have had very limited mobility and more joints getting involved due to failing several medications to keep my inflammatory arthritis under control. You feel so guilty feeling like that but the understanding of our condition is not there - for others, our families and even ourselves when even during the day symptoms change. How can you explain why one day you are Ok so people think everything is back to normal and then the next back to square one .......

  • I didn't see the post but I'd love to know what it said.

  • Nor me.grr.......

  • I think it was about Prince Harry's opinion about disability. It won't stop you achieving anything! Actually, it might!

  • I saw the post and frankly I can't understand why people allow themselves to be offended. At the moment I am relatively okay but I was classed as disabled for many years after having spinal surgery and was unable to walk. Yes, it is dispiriting, even soul destroying when no one seems to understand what you are going through, but we get through that (and then start climbing the next mountain). But, everyone is entitled to their own opinion even if, in my opinion it is wrong. That is the beauty of living in the UK. Spending time in the Middle East brings that home to me many times a day. So let them have their opinion, we know better because we live it. Clemmie

  • Hear hear.

  • I didn't see the post,but i have noticed laterly things are being taken down for a host of reasons none of which seems logical. We can no longer say what we feel or want,hence i now don't post as much as i used too.So though i am still here and i answer posts i just don't post as much.

  • I totaly agree with you Sylvi. I dont bother blogging anymore as i am affraid that i might get in trouble. Xx Alison

  • I have taken one blog down because it upset someone,then they took another down because they felt it risque and a limerick was taken down as well. It is not the HU i joined.xxx

  • Here Here. (sorry daren't say more!)

  • It,s not the same Sylvia but when I joined and you were here before me there were only 50 members, now there are over 3600, this is fantastic but I suppose it,s inevitable the relaxed atmosphere has gone. That's why I,m glad I have you as a friend on fb as well as a couple of others :) xx

  • So know how you feel what happen to the site i joined???It is now getting silly like others i don't bother to post any more x

  • I saw the post and, like Matt, I'm concerned that it was deemed offensive and removed. OK, if you are a rampant royalist you might not like a member of the royal family being criticised but otherwise it was just one person venting their frustration which is, after all, one of the most useful reasons for this wonderful forum to exist. Personally, I read it as meaning that a young person with a high public profile and limited experience of disability actually did more harm than good by suggesting that anyone with a disability can do anything if they just have the gumption and determination. I don't think this was in any way anti royalty just upset that because injured service personnel with state of the art prosthetics can undertake arduous physical challenges it was implied we could all buck up and trek the Andes or some such. Nor do I think it was in any way trying to belittle the impact these injuries had on the lives of ex-service personnel. Again it was deep-seated frustration that those of us that try to get on with it day after day, year after year, are often seen as malingerers if we need to take a few days out whereas people with a sudden-onset but hopefully transitory serious condition are feted and treated as heroes for overcoming them. I've tried to précis in a way that keeps individual examples out so it explains a bit to those that didn't read the original post without offending as I know how it can make one feel anxious and out of the loop to read of removed posts and not know what's happening.

    I do hope the person that posted the "offending" post isn't feeling too upset and doesn't feel hounded off the site as previous people sadly have. Your contributions are always valuable to me my love and you're still a hero in my eyes for your summer exploits x

  • There is a difference to the service personnel than us, yes they can do anything as they have different problems to us.

  • Sylvi, you hit the nail on the head when u say service personnel are different . As an ex military I notice that "civilians" are just on par to being mainly whingers and do not understand that life owes you nothing . Take the NHS ,how many people do you see complaining about it , some even suing it for mindboggling reasons,but if those same people had the NHS of some of our European partners they would realise that ours is a rolls royce system. where I am at the moment ,you have to pay for your food(no choice of menu take it or leave it) you pay for each night in a hospital bed,scans,ecg`s etc you pay for them all..cash or through insurance .

    But I digress, Harry .

    One of my sons was eating in a mess in Afghanistan when when someone asked if he could join him at the table, my son said ok mate,and they chatted for about 15/20 minutes while eating. It was only a few hours later that the penny dropped as to who he ate with.

    Harry is down to earth,no pretentions unlike some and does a hell of a lot for the disabled quietly .

  • Bit late commenting on this thread bobski1. This post is two years old! Lol

  • Yep ,I did notice ,but people still read posts, You did LOL

    I was just trying to set record straight about Harry as he gets some shit most of which is a load of bollocks (rupert murdoch take note)

  • Harry is a great ambassador for the forces as he knows what they go through when they are in a combat zone. It is much the same with us in a similar way as we fight these diseases with all we got. I know forces people are a breed apart as i am married to a veteran who never gives up and he takes great care of me all the time.xxxx

  • Hi Sylvi,

    I`m glad to see your hubby is so caring to you it`s not always easy in your position,just get him to make use of the help that is available to him if he needs it.

    bob

  • I also read the "offending" post and actually thought that the comments it contained were true. I thought that it was a really good post. I am sorry if some small minded people were offended but it portrayed MY thoughts exactly. I am a royalist and no way was it anti-royal.

    It is time the British public started to let other people have their own opinions, we are grown-ups able to think for ourselves, we do live in a democracy.

  • Thank you all for your posts both to the original discussion and this post. Ye it was me. :(

    As you all above have stated I was trying in a frustrated way to spark debate about the topics surrounding disability.

    I of course in no way meant to upset anyone and my biggest regret is the people I upset couldn't debate their thoughts instead of reporting the post?

    The reason it was taken down was that I didn't make it clear that I understood the psychological damage those with serious disability suffer . I did feel if my post was read , it questioned and asked for people's opinions all the way through. And expressed my frustration at feeling this way.

    Nras are having another " RA awareness week " soon to highlight the invisibility of RA.

    So thanks for those who took part in the debate, apologies to those I upset, but when , probably not if, I unintentionally do it again, could you just debate it with me?

    And so we don't get put on the naughty step, maybe we should let sleeping dogs lie?

    Axx

  • This is getting too ridiculous Allanah isn't it,you are not on the naughty step,but we are being treated like children on here though.xxx

  • Allanah, you shouldn't need to worry about offending people. Everyone on here should know that none of us mean to offend anyone. This site should be a safe place for us to express ourselves without worrying. After all, we have enough to contend with, don't we? So get off that naughty step and enjoy the rest of your day! Clemmie

  • I thought we had a really reflective discussion, and I was amazed when it had disappeared. If you're on the naughty step, I'm coming too.

    Dotty x

  • Hello Allanah,

    I read and replied to the blog which was summarized so well by mistymeana. As far as I was concerned you expressed a frustration that I too feel and actually, I am offended that my response has been removed.

    This was not a post about how lucky the soldiers are (goodness knows, none of us in our right minds would like to loose a limb) but about the disproportionate care and attention that is distributed underneath the disabled umbrella and the unrealistic expectations that can emerge as a result.

    One type of disability can be portrayed as heroic whilst another is portrayed as lazy. Whether this is true in reality or not is less relevant because it is our truth and is how society makes us feel right now.

    Unfortunately the lives of everyday people struggling to get washed dressed and get out for a pint of milk or tie a baby's nappy doesn't make good television and are not glorified - BUT IT SHOULD BE. Instead of which what we get are filthy programmes such as benefit scrounger and saints that make you frightened about having a good day in case people think you are lying about your bad days.

    I also feel that it would have been more useful to have entered the debate rather than report it as offensive because I feel certain that any misunderstandings would have been immediately rectified and clarified.

    I feel that I have come to know you well over the past year Allanah and am confident that you would never knowingly cause offence (and neither would I). These are topics that really ought to be debated and much as I love the lighter side of this site there should be an even balance between serious political/social issues that affect our lives and the cheerful posts that brighten up our days.

    Judy

  • Absolutely. Well said.

  • I missed this as I've been in hospital after starting drug no 4. Thank you for explaining Mistymeana. My feeling is that everyone's experience is equally valuable, whether you are lucky enough to try a drug that works for you straightaway, or it is more difficult finding one that works. (I'm in this latter category with aggressive RA that is proving hard to treat due to sensitivity to drugs). This is supposed to be an open, safe forum where people can post whatever they are feeling, whether having a bad or good day. Perhaps NRAS could share some info about RA with Clarence House to expand Prince Harry's notion of disability. The other thing having been a Press Officer for a disability charity is that sometimes the media can take words out of context, give a different angle to what was said. Having not seen the original comments it's hard to say.

  • That sounds a great idea I havent been on here for a while keep having problems getting on especially on my android phone. I used to visit more often but these days there doesnt seem to be such a uplifting side to it. We all have had days or even bad weeks but we still need to be there for each other.

  • Hope drug no 4 goes well for you, I am in exactly the same boat. I hope to start my fourth biological soon , Rheumy called me and said he was " studying "

    My notes yesterday, ! Seems I am giving him pause for thought about what treatment next ! Good luck with yours xx

  • Thanks Allanah. It looks like my post actually crossed with yours - I took so long to write it! Good luck with the next stage of your treatment too. Unfortunately it looks as if I had a reaction because I'm so sensitive to drugs, as with all the others (I had to go to A&E, as with the others). (Taking a short course of steroids now). I've been given the option of halving the dose in a fortnight's time rather than trying drug no 5 just yet! Good luck to you too xx

  • At the risk of offending plenty and maybe being censored, can I just complain that RA is not a very glamorous disease compared with other disabilities. I have gnarled ugly hands and a slow stumbling walk.

    Some illnesses get more press coverage than others, especially if celebrities are involved. We are mere Cinderellas, with no invite to the ball, perhaps?

  • Phoebe, i quite agree with you on your comment,you don't see celebrities with RA do you,i think Alan (fluff) Freeman was the only one i knew who had this disease and he disappeared quickly and i believe he ended up in a home.xxx

  • Claire King, the former Emmerdale actress and Strictly Come Dancing participant, has RA and appeared on This Morning a few weeks ago to talk about it. She is amazing. The way she is portrayed in the media is very positive BUT her experience doesn't represent daily life for people who can't do up their buttons or open the milk, or who can walk but do so slowly and need to use a stick. Maybe she does sometimes, but she doesn't do it in front of the camera, so she conforms to the "you can do anything if you just try hard enough" image, whether she means to or not. However she has spoken very publicly about the reality of RA, and doesn't push that line herself.

    One problem, of course, is that RA is so variable and manifests itself in so many different ways between people and within the same person. It puzzles me that some days in the morning I can barely walk across the room, but in the afternoon I can ride my horse, so no wonder other people don't understand it.

    Dotty xx

  • A few years ago Micheal Gambdon was in a play that was televised showing gnarled hands and feet through PsA and skin which was peeling through Psoriasis. He was portraying the writer of the script and the writer was interviewed by Micheal Parkinson. The write-ups for both programmes the following day made unbelievable reading as the public thought it should never have been published as they said it was disgusting to see those sights!

    Until I was given Enbrel those sights were exactly my skin and my hands and feet could have become gnarled like that without Enbrel. I count myself lucky to be able to have been given these drugs, and yes I do agree more should be shown on telly, but the public do vote with their feet which is why they are not shown.

  • Was that The Singing Detective? I wonder if it would get the same response nowadays - has society moved on at all? It would be nice to think that it has. I am ever optimistic, but perhaps unduly so.

    Dotty x

  • Yes, I think that was the title, not sure if society has moved on that far. Otherwise programmes similar to this even documentary ones, you find on channels that have to be paid for would be on freeview for all to see. But thats my humble opinion, but like you, I would like to be optimistic.

  • Then there's Chris Beardshaw the gardener who didn't trust his rheumies or the drugs and has used 'diet and lifestyle' to control his RA (says he would have been in a wheelchair if he hadn't). Ironically, he did the Chelsea Garden for Arthritis Research last year, despite not believing any of the research! Once again the promotion of the sickening idea that if we're not well it's because we're not trying hard enough and therefore we are to blame.

  • By chance I saw Bob Mortimer on TV today - he has it too. But I don't think he talks about it much.

  • Muse - What we could do with is a television programme which FULLY explains how different people can suffer so differently with the same disease. I am one of the lucky ones. Although I have slightly nauseous side effects from the drugs, and a truly terrible day after my MTX injection, my RA is basically under control (other than the odd twinge here and there and nearly constant tiredness), but I can remember quite clearly the pain I was in before the drugs took effect. I can remember not being able to carry a cup, or peel potatoes, or lift a pan, or garden, or walk more than a few metres, or get out of bed in a morning... I can remember going to A&E because I thought I'd broken my wrist and sitting on the stairs crying with pain and despair (it's bringing a lump to my throat just thinking about it all), and although I don't like taking the drugs, I know that without them I would be back to square one. People I work with, and family, know I have the disease, but because I now don't show many symptoms, it gets forgotten about, although in all fairness I try not to dwell on it either, but the disease now manifests itself to me in the form of drug side effects, some discomfort and tiredness rather than the pain. I do however feel the pain of those of you who still suffer as I did, because I KNOW what it feels like, and I also know it's by and large invisible, even more so the way I feel now - however I do understand that people who haven't had it, cannot understand the suffering of those who do. I wouldn't have understood it either before I got it, but that's only human - NONE OF US really know what other people are feeling, physically mentally or emotionally. In life away from forums, we all have friends and we all know other people who we have chosen not to make friends with because we don't particularly like them, their opinions or attitudes - that is also being human. So why should the forum be any different? If we read something on here we don't like we can either ignore it, or we can put a different point of view - two choices, but censorship shouldn't be the third choice (unless it is obscene or one of the 'isms').

    Sorry for going on so long. xx

  • Hi all

    I saw this post and thought that it might help for you to hear why the admins made the decision to remove the post being referred to.

    Firstly, we do not take the decision to remove or edit posts lightly, and we therefore only do this in exceptional circumstances. I am therefore really sorry to read on here that some of you feel we are stepping in too much or have removed too much content, as we do not feel that we remove much content at all on the site, as we will normally address concerns by commenting on a thread instead.

    The most common reason for content being removed on the site is when people are giving or asking for medical advice, as we feel that this can be dangerous, as everyone’s situation is unique, and these queries are best addressed to the person’s own rheumatology team.

    I would not normally come on here to discuss why a particular piece of text has been removed, as I would not want to be seen as ‘naming and shaming’ a specific person’s posts and it can lead to the deleted topics coming up again. We always go to the author to explain to them personally why their text was removed. However, as Allanah has commented on this thread, I hope she will be happy for us to comment on this occasion.

    In the case of this specific post, we took the decision to remove Allanah’s thread after looking through the content on the back of some reports of abuse, some relating to the original post and some relating to some of the comments on it, though we felt there were some valid points, particularly about RA being misunderstood, as it’s an invisible disease. As Allanah has said, we hope to work towards addressing this next year in RA week, where our theme is RA as an invisible illness.

    Obviously I cannot quote some of the remarks that caused offence, as this would defeat the point of removing the post in the first place. However, some of the remarks that were made appeared to belittle what people who have experienced loss of limb go through, and some remarks implied that if this is as a result of serving in the armed forces, then it should just be expected, as part of the nature of that job.

    On a number of occasions, remarks have been reported to us where people were comparing various conditions (cancer, for example being a condition that is often brought up). Whilst I appreciate that it is frustrating when other conditions get more attention or more understanding from people, I think that if in the course of comparing another condition or disability with rheumatoid arthritis it is seen in any way as if the other condition is being downplayed, this can be very upsetting to people with personal experience of that condition.

    We have an enormous number of people using this site now, and they will all come from different backgrounds and have different experiences, and whilst we don’t want to appear heavy handed in deleting posts, we equally have to all look at how some opinions are phrased and understand that discussion of some topics on the site, such as a comparison of different conditions and disabilities can cause offence to people. Perhaps in future on a post like this we will look at editing the unsuitable remarks, rather than removing the whole thread, but we were concerned, particularly in light of recent arguments on the forum, about the potential for comments like this to be made again once the original comments had been moderated.

    In defence of people reporting this post rather than getting involved in debate, as has been suggested, I think this was simply to avoid an argument sparking off on the site, especially about a topic that is so emotive to people.

    I hope this helps to explain our actions on this particular thread. We are here to help the forum to run smoothly, so are sorry if on this occasion we have upset people or been seen as being heavy-handed, but hopefully we will all learn from this both in how people post and in how we admins deal with these situations in the future!

    Kind regards and apologies for the long response!

    Victoria

    (NRAS Helpline)

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