Apology and Observation : Yesterday I posted some... - My Ovacome

My Ovacome

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Apology and Observation

SASSY196 profile image

Yesterday I posted some observations with respect to the NHS website. Today my post was removed because some members considered it and some of the follow-up comments transphobic. Having now seen those comments I completely agree some comments were abhorrent and completely unacceptable.

I would like to apologize to anyone who read those comments, it was not my intention to promote such views or cause anyone distress.

I struggle however to understand how my original post was transphobic and would genuinely like to understand how/ why it is - if it was your view , perhaps you could pm and explain your thinking.

I am a social worker I have spent most of my adult life trying to promote inclusion, diversity and equality. Overtime I have seen significant positive changes for many minority groups through constructive discussion. I have learned much through open, honest, respectful and reflective discussion and continue to hope to do so. This was my intention.

The aims of Ovacome is to provide a safe space where people affected by ovarian cancer can share their experiences. In my view the experience of accessing information through the NHS website is a valid matter for woman and people in the UK with ovarian cancer. It is a first point of contact and it's important that the information is accessible to all people and so I thought it a legitimate topic for conversation on this site.

Currently there are important conversations going on with respect to gender identity.. Cyst gender women and transgender men / women and those. who are gender fluid have experienced marginalisation and discrimination across time and continue to do so.

It is important that there is an open, frank and empathetic discussion about sensitive matters such as the changes the NHS website I highlighted. It is only by respectively having these discussions we can move forward. Whilst I completely agree that transphobic comments are removed an approach of shutting down conversations is not going to support positive change for anyone, least of all those who are the most marginalized.

I thought Ovacome was a safe space for me, as a person with a terminal diagnosis of ovarian cancer, to express these views and to open an important debate, however it seems that this is not the case. I have therefore decided to leave the site from tomorrow.

Sassy 1966

54 Replies

Hi Sassy,

I personally didn’t see your post or the comments

so I can’t comment on what you were saying.

However,I totally agree with you that you should be able to express your opinions on here.I have had posts removed or ‘edited’ on here when all I was doing was trying to suggest something that may help someone.I wasn’t forcing anything or telling anybody they must do this.At the end of the day people will do their own research and make their own mind up.It seems to me that anything said against the NHS or the Nice guidelines is not allowed.Don’t get me wrong the NHS does a good job in general but it is far from perfect as many of us have probably discovered.

Anyhow,I am sorry you will be leaving the site Sassy and send you much luck and many best wishes x

I would also like to apologise if any of my comments upset anyone. I'm hoping it was not my comments.

I would like to message you but can't figure out how to do it. I'm sorry to see you go as your comments did not seem anything to worry about to me. I don't think it was your comments but our responses that caused the problem. You didn't say anything wrong in my opinion. I actually thought of leaving the site myself but will remain for the time being but will probably not respond to any questions, not that I'm much help anyway. All the very best to you. Love Zena x

Lizzieanne profile image
Lizzieanne in reply to ZenaJ

It didnt upset me and thought it a good post. I didnt see any offensive comments but there were only about three replies when I looked and were very much live and let live but that your point was very valid. I just wonder who wrote that for the NHS. Sorry you are leaving as so much help on here

Neona profile image
Neona in reply to ZenaJ

To private message someone please click on their name and a page comes up with a message button

ZenaJ profile image
ZenaJ in reply to Neona

Thanks Neona

SASSY196 profile image
SASSY196 in reply to ZenaJ

Please don't worry.

A p.s. I've been worrying about it all day.

Neona profile image
Neona in reply to ZenaJ

Feel just the same as you- hurt , stunned, offended, silenced, stressed, worried

SASSY196 profile image
SASSY196 in reply to ZenaJ

Please, please don't.

Hi Sassy. I read your post and all the replies. While I did not interpret your post as transphobic, I understand why OVACOME removed your post and the replies. I respect your decision to step back from the forum, but I am sorry the ladies here will be deprived of your future contributions. Perhaps you will return in the future. I hope so. Take care and best wishes. Sashay

Sassy, I have total respect for your two posts, which seemed to me to be the soul of reasonableness . If others posted inappropriately., they may have needed to be removed,but not the whole chain. I did not see any inappropriate posts. Censoring may sometimes be correct,in my ulnfashionable opinion, but there is a delicate line to tread with regard to freedom of speech. Please reconsider leaving. ThAt means Ovacome will have silenced your voice entirely and I am sure it do not intend that. I,for one, would regret your leaving.

I totally agree with you. Inappropriate replies should be removed and I can see that one member is very worried that it was her post and I feel sorry for her.

However it is the way many people feel

I completely agree that shutting down debate isn’t helping…I missed all this yesterday but I do feel that we have to be able to talk about difference respectfully x

I can understand your decision to leave, Sassy. But I hope you will reconsider! Unfortunately I didn’t see your post and replies before it was removed. I wholeheartedly share your concern that this contentious issue needs to be explored in open discussion. Please stay with us!

Sassy i thought your post yesterday was an interesting one and well worth a debate/discussion. I was actually quite shocked to see the message that the post and responses had all been removed and more than a bit angry tbh as there was nothing in your original post that was at all transphobic and here we all are being silenced as women is how i interpret it. I am not leaving the forum i dont think as i enjoy the support of the women on here but i share your disappointment in the handling of this by Ovacome.

OVACOme’s post on this matter rather slaps all who posted on the wrist. Not their intention, no doubt, but that is how the readers May read it.

Neona profile image
Neona in reply to Trickysite

It does indeed and I feel bullied and hurt by it. It tajes a lot of courage to post online and I think many of us will hesitate to take part in the future.

Agree with you wholeheartedly- I was shocked and hurt that the post was taken down and I also wondered if it was my comment that was considered offensive. I am now afraid to post on this site.

Hi - I didn’t read your post Sassy or the responses. If Ovacome were unhappy with it they should have contacted you personally to explain their reasoning and exactly what comments they were unhappy with. This would have been a more professional approach other than leaving you upset and worried, when we are all dealing with ovarian cancer. We all need to support each other and I certainly don’t think this should make you leave the forum either xxx

Hi sassy196. Please don’t leave this forum . This journey is tough enough without isolating yourself further.

I feel it is up to forum admin to delete comments that are not acceptable however I also believe that we are entitled to our opinions.

It feels as if you have been shamed and this is also not acceptable.

Well, well, it seems my earlier response has, indeed, been removed! I know 3 people saw it because they 'liked' it, but now it's gone😄😂 The subject of gender identity is clearly taboo...

Miriam

Neona profile image
Neona in reply to bamboo89

Yes mine gone too along with my reply to the admin’s post. I am in the process of making a formal complaint- just need a quick kip first!

This is so sad, we used to be able to have frank and open discussions on this forum. I replied to support sassy earlier, my comments were not in any way homophobic, offensive, ,racist or aggressive, two people liked my comments but my reply to sassy has been pulled.

It seems we are now not able to post on here if it doesn’t fit within perceived acceptable criteria. This is seemingly a new direction for the group and not a happy one in my opinion.

I’ve been a member here for over 7 years and think I, personally, have really benefited from being here and hope that along the way I’ve helped others as they deal with the diagnosis and treatments for this disease. In the past if you posted something that was outside the criteria of the forum, admin would message you and tell you why it wasn’t being admitted or they would edit your post if information wasn’t quite accurate, again they’d tell you of any changes. We do not appear to have this facility in place nowadays.

I don’t think I can be a part of this anymore and will leave the group. To all you ladies I wish you well as you go along life’s often tempestuous roads, I wish you all good health and send my fondest regards to you all.

To the ladies I speak with away from the forum, I will contact you and we can use alternative form of contact.

❤️Xx Jane

Neona profile image
Neona in reply to Cropcrop

Hi Jane, I feel exactly the same as you but am going to see through my complaint before I go. Today admin told me that any post that received a complaint was deleted -apparently without any regard as to whether or not the complaint was justified. They invited me to make a formal complaint which I will do . Guess their job as moderators is pretty easy!

Neona profile image
Neona in reply to Cropcrop

Jane I have followed you all these years and don’t want to see the last of you. I am on the facebook group Ovarian Cancer UK which is an excellent and well-moderated group, best wishes, Wendy

Trickysite profile image
Trickysite in reply to Neona

I can't find "Ovarian Cancer UK". Please can you post the full website address. Thank you.

Neona profile image
Neona in reply to Trickysite

Hi Trickysite- Ovarian Cancer UK is a facebook group- are you on facebook?

Trickysite profile image
Trickysite in reply to Neona

Got it! Thanks

Lochawe profile image
Lochawe in reply to Neona

Thank you for this alternative Neona. I am going to join.

MH500 profile image
MH500 in reply to Cropcrop

Oh Jane! Please please don’t leave :(. I love hearing from you, you always cheer me up xxx

I saw your original post and only saw one reply, but it was a perfectly reasonable post about an issue that affects not only women but women with OC. As you stated it could be confusing for women who don't have English as their first language. It's perfectly reasonable to state the fact that the word men is still used for testicular cancer. Organisations are so frightened now to have any discussion they think it's just better to shut it down. It only proves you were absolutely right to post your post. No, there should be no transphobia, but likewise there should be no women- phobia.

Oh Sassy, don't go. I haven't seen your post but I've found your posts helpful in the past and want you to stay. My posts get edited too. I get why but I also agree that we should be allowed to criticise the NHS and I'm gonna say this now. They have completely ****ed me over a couple of times. They're not all bad and neither are they all good.

Sassy, I hope you and Neona and Cropcrop won’t leave the forum. I found this forum right when I was getting diagnosed in 2018 and sadly many of the people who were active here are no longer with us. However it’s been my most valuable online support. I think it’s better to get Ovacom to change their policy than to leave. I hope they will reconsider. People object to all kinds of things that many others find valuable. It makes me wonder whether other posts have been removed, but the poster didn’t speak out. Xx

Neona profile image
Neona in reply to delia2

Hi Delia, we are moving over to the excellent and well-moderated Facebook forum called Ovarian Cancer UK. Ovarian Cancer UK is the forum that, at least in the short term, saved my life. I will give an update before I leave this group of lovely people. Meanwhile I will be making a formal complaint about our treatment by Ovacome Admin. I will not be bullied or falsely condemned and I will not apologise for wishing to be called a woman when, in fact, I am a woman. Best wishes, Wendy

Cropcrop profile image
Cropcrop in reply to delia2

Hi Delia, I’ve joined the Facebook page that Wendy has shared, it seems to be an open forum with lots of friendly chat and similar to how Ovacome used to be. I think it’s so sad that Ovacome has gone down the line of not wishing to offend some parts of society at the expense of its members and some of us are longterm members, I am proud to be a woman and should be allowed to say so without being censored or without offending anybody. I too have lodged a complaint with Ovacome and await their response. I will be here for a short while yet whilst I contact the ladies and a chap I chat with away from the public pages to let them know why I’m leaving here and where I’ll be. It’s so sad that we aren’t able to post without being harshly edited without any reason for the editing action being given to us. The whole point to this forum was to be a safe port where we ask questions, help each other, sometimes have a laugh but mostly benefit from what once was our lovely community. Xx❤️Jane

Petrolhead profile image
Petrolhead in reply to Cropcrop

Jane- sorry to see that you are leaving. Who will I have to support me in disputing the C Wark posts. (This sounds as it is all about me. ) I will continue to quote you with that excellent post which I have got on permanent file. I am not on FB so cannot join that group. I have access to my other half fb but I don’t think that they allow men to join. (I may try again). Am I allowed to say men in a post now?

You have put many excellent posts on here. We seem to think very similar on many things.

I totally agree with the over zealous removal of posts.

Best wishes

Fay

I did see the post and I did not see anything in the original post or comments that was inappropriate or transphobic . I was on my way out and thought I would reply , but when I got back was taken back that the post was removed . I am saddened also that you and the other ladies are leaving the forum , but I understand how hurt you must have felt , it’s unfair . My support is with you 💕 Lesley xx

Hi. This is very disappointing. I hope you reconsider your decision to leave. I am wondering if your post was removed because someone was offended and raised a complaint? I, like many others, thought this was a space where frank and open discussions could be had. It seems that some subjects continue to be taboo so it’s a lesson for us all to only share comments that meet with everyone’s approval. Such a shame :-(

I hope that you won’t leave as well. I didn’t see the post, but I find it distressing that more and more conversations are being shut down and deemed offensive. It’s the same way in the US. Suppressing ideas and discussion is a slippery slope. I hope you will stay and that maybe by making all our voices heard we can help to make this forum more accepting. However, I do totally get why you feel that way, and you have to do what’s best for you. Best,

JoAnna

As I understand it, there were one or two transphobic comments - I did not see them myself, but apparently that was the problem. But one might ask why was the whole post removed and not just the unacceptable comments? Its clearly possible to remove individual posts because my earlier comment got taken off this thread (although it wasn't transphobic in any way). I suspect someone up there has decided the whole subject is too fraught with difficulty and politically sensitive, so they'd prefer we didn't talk about it at all. Right now, it is politically sensitive and highly contentious, but its a shame that sensible discussion and different points of view which do not involve hate speech or outright condemnation are not acceptable.

Neona profile image
Neona in reply to bamboo89

Admin told me that they remove every post for which they receive a complaint- apparently without regard to whether or not the complaint has any merit! I have yet to find anyone who saw an inappropriate comment. Being offended is a choice - I find it hard to believe that members of this forum would complain about other members- it is very unsettling. We are all here to support each other.

bamboo89 profile image
bamboo89 in reply to Neona

in my experience, nine times out of ten, being offended is based on a negative emotional response rather than logical thinking, or a simple misunderstanding due to an emotional response...

If they remove posts if there is an objection without any investigation it is worrying.

What if people complained about every post it would make the forum have no new posts or replies.

I am of the Voltaire camp. Paraphrasing-I may not like what you say but will fight for your right to say it.

Best wishes

Fay

Agree with everything you have said.

Above and beyond what you said, I believe that shutting down women's voices and redefining legitimate concerns as transphobia and bigotry is at the very least unhelpful, if not somewhat sinister.

I totally agree with all comments made and Sassy I am truly sorry you have been put through this. We are women with a women's illness and shouldn't have to walk on eggshells because of current 'trendy' restrictions on free speech. If Ovacome take this post down then I will leave too. Keep well and concentrate on your health - I am coming up for 11 years since diagnosis with 5 chemotherapies behind me. Our survival is what is important and not this uber-PC nonsense. Mariexx

Hi All,

Thank you for all replies. I have a tendancy to drama and have decided that leaving the site is not actually going to change things.. There are many, many positives to this site.

So instead I have decided to raise how a general policy of removing any post where there is a complaint, without regard for the content is a flawed policy, potentially making the site unsafe rather than safer,with the board of trustees. It is not the fault of the Ovacome team if this is a policy set and approved by trustees or whoever makes policy.

So instead of leaving I have asked to be sent a copy of the written policy on what is appropriate/ relevant content and that of the automatic removal regardless of content.

Once I have read through understand these I will then email the

chair of Trustees so I can explain the situation from my perspective and as I can see, that of many others. Hopefully they will review the policy.

Please don't leave the site, it's supportive and although I think this policy is wrong the Ovacome team clearly care very much about those on the forum,

Sara

Petrolhead profile image
Petrolhead in reply to SASSY196

I would also be interested in seeing the policy as written. I think I will email them as well. It is certainly better to change things from within.

Best wishes

Fay

Cropcrop profile image
Cropcrop in reply to SASSY196

I am still here for the time being because I have sent a complaint to Ovacome regarding the blanket removal of posts/comments without any rational being offered for their actions. I have had an acknowledgment of my complaint from a lady in admin who says a complaint can take 15 working days to be answered and, depending on the nature of the complaint content, it could take longer. Once I receive their response I will let you all know what they have to say. ❤️Xx Jane

Hi everyone who may be leaving

I didn't see the posts so I can't really comment but it would be such a shame if anyone felt they had to leave Ovacome. There is so much help and support, and many of you have been providing this for years - certainly before I joined in February 2020 - and those newbies joining will have fewer "old lags" to support them and give them hope that they will get through this. You give us all so much positivity and encouragement which is just so important (I remember how brilliant people were when I posted in July 2020 as I thought I might have to have a stoma - I didn't) but in a the end I was feeling much better about it - thanks to you.

Whatever your final decision(s) is/are, I wish you all the very best for the future - lots of happiness and good health. I am on the Ovarian Cancer Community on Facebook so may see you there!

Thanks for your past support. xx

I do think Ovacome should publish their policy on removing posts. Can’t think of any reason why not.

I’m glad you’re staying Sassy. Older voices are really important on this site and you have always taken the time to reply with kindness. I hope cropcrop decides to remain also. I’d really like to see overcomes response. An initial ‘we’ve seen the messages and will respond further shortly’ will be a good start.

Managing a forum is not easy but surely a blanket response to remove any post after receiving a complaint can’t be correct?

I didn’t read the initial post and messages only this post. My view is that we’re all struggling/offering support/asking advice/scared/angry/frightened/compassionate. Take your pick.

Ovacome, over to you…

Agree, Rosewall. Ovacome has been very quiet. I trust some thinking is going on.

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