Hi, morning everyone, hope you’re all ok. So I felt like I just had to put this post on, after reading a comment on a post about whether to get a wheelchair, or scooter. someone had replied that a scooter would make you feel less disabled, you could leave it outside a shop…I was really offended by this, I have a scooter and I don’t feel less disabled, I feel disabled and I certainly can’t leave mine outside a shop, reason being I can’t walk that much now, I can only walk short distances around the home with a walker, you don’t have to be a full time wheelchair user to be disabled, so please think 1st before replying.
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Hello anon…wish I knew who I am speaking to.
I used a scooter before I became totally immobile and had to switch to a wheelchair.
I know I did feel less disabled in my scooter.
When I replied to the post about this subject, I was putting my own experience across.
Of course I didnt mean to offend you and offer my apologies for doing so.
We’re all in this MS life together, so I never wish to cause offence to anyone and only wish to be supportive.
Boudsx
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When I use my scooter, I have a sense of independence and freedom to move where I want to, so there is an impression of being less disabled. I dont think that any offence was intended, sometimes the received message is different from the intended message.
All the best
Mick
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Firstly I don’t think Bouds meant to upset anybody, not her way and I do agree up to a point with Mick about feeling more independant on my scooter, but I do still feel disabled, because I’d rather be able to walk, (just like a lot on here) but I can’t for any length of time. It’s hard to reply in the right way sometimes.
Jean x
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If we have MS,y we have a disability from diagnosis. Only had experience of a wheelchair because we chose to stay at a cabin near to a disused railway track. The only way for me to get there as by hiring an all terrain wheelchair. This enabled me to go for trips with my family walking and on bikes. A scooter wouldn’t have done it. My boot scooter enabled me to join in with walks on other tracks. The trolley enables me to go round the shops. My rollator enabled me to have lunch at a local pub. My trekking stick enables me to walk up the road.
Comparing the wheelchair (it was unusual as you were sitting back a bit) to my scooter: the wheelchair was more difficult to get in and out of; attracted more attention as it was very distinctive; the scooter requires/exercises more core strength?
Essentially aids are tools, we cannot afford/store all the possibilities. I tried out a specialist electric recumbent trike, but it was not transportable in either of our vehicles and it would not be used enough from home. We live our lives by using the best tools we can find.
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Sorry if I offend anyone (especially anonymous posters!) with this post but it’s my thoughts regarding this.
If we have to be ‘careful’ when replying regarding our own experience and our own feelings, just in case we might upset someone, we might find that we are unable to be honest.
Anyone who posts on here can really only speak for their own feelings, opinions and experience. Bouds is disabled. She has been so for years. She posts on here with her experience, with honesty, openness and care. If she is to be censored when describing that A made her feel less disabled, while B makes her feel more disabled, then she’ll be less able to answer posts with her own feelings. In my experience (from my many years of using this forum), Bouds has never deliberately gone out to make anyone else feel bad or uncomfortable. In fact the reverse is true. She gives up time and energy to make people feel good/better about their own situation. A kinder and more thoughtful person would be hard to find.
I consider that the vast majority of us are reasonably careful as it is. No one here wants to make another person feel bad. But we need the freedom to express what we feel or have felt in the past.
Personally, I can see that using a scooter, if that’s possible for the individual, can make one feel less disabled. It’s not possible for me, because I can’t walk at all, so have to use a wheelchair all the time. I wouldn’t stop someone explaining how a scooter felt for them. Equally, once upon a time I used crutches. This made me feel a lot less disabled. When I began to use a wheelchair I felt self conscious and so very disabled. When I couldn’t walk at all and was forced to use a wheelchair full time I felt way more disabled.
There is no way I will be censored in my explaining my own feelings. Nor should anyone else. Our feelings are personal. I have no intention to make anyone else feel bad and would be sorry if my words did. I believe that this is the sort of feeling that most of us who use the forum feel.
If I really wanted to make people feel uncomfortable, maybe I’d use the ‘anonymous’ option. But I don’t believe in hiding behind anonymity.
Just my thoughts and feelings.
Sue
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Well said Sue.
Surely when anyone of us answers a question on this forum we are referring to our own experience, therefore giving an honest response in explaining how they felt. No one would deliberately go out of their way to cause offence, and certainly not Bouds from what I know about her, the opposite is the reality.
Every one of us can only give our personal experience, that’s how we help one another surely.
Pam x
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I let this site a few years ago and stayed away for years because I felt it was too clicky, I came back hoping it had changed…sadly not, I feel ganged up on for my post, so good luck to all, I’ll be leaving again
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You go, Ssssue! Bouds is #1!
You should not feel “ganged up on” many people hold different opinions and points of view, that is what keeps things interesting.
There are frequent posts with which I do not agree or feel irritated by but I do not wish to take things to heart, sometimes on reflection I learn a bit about other perspectives.
As for clicky, there will always be natural groupings of folks with similar histories and perspectives. Perhaps I am lazy but I can not get too worried about it and there can be fun in chatting with people who have similar OR vastly different perspectives.
All the best
Mick
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There are some members who have a specific type of style when posting. It might be the use of particular words/grammar/dialect, it might be a character style eg, funny, sarcastic, bad tempered or constant moaning, complaining, being self righteous…
When people choose to post anonymously those traits usually manifest themselves and the identity of the person becomes almost obvious. I’m pretty sure I can guess the identity of the poster here.
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I am not part of any “click” here, and seldom post, but must say I have always found comments both friendly and helpful. Surely differing perspectives were exactly what you were looking for? Boudica is a friend I have never met, but I know that she would always help me if it was ithin her power to do so, and would never knowingly cause offence to anyone.
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Well said Sue. Bouds would not intentionally hurt anyone. I don’t think there are many on here who would. We are here to help as/when we can.
For the Anonymous person who wrote the above. I feel you are an angry person. You have not been ganged up on. We are adults on here. I wish you had been adult enough to say who you are. I was hurt a few years ago by a very rude person here and stopped for a while. But they were rude in their manners and way of speaking aggressively. Which I do not appreciate in anyone. I came back and I am so glad I did.
Perhaps this site isn’t for you? May I wish you luck in the future.
We are honest, caring people who should stick together as we do.
Anne
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I like to hear different opinions and ideas - it gives a different perspective and something to think about. I dont find the site clicky only that friendships have been made over time and im sure no offence was meant but it would be a shame if anyone felt they had to leave because its a voice and opinion that wont be heard
Well I for 1 am supporting anon, sorry but I really don’t like some of the replies, poppy, I could guess who this is, really, anne, this person sounds an angry person, really, who really knows who on here, no one, have you ever meet anyome on… I have and she knows who she is.
Jean x
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Sorry Jean I cannot understand your reply. Please could you explain further? Anne
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Really loved some of these comments. Very thought provoking.
Too be honest I saw the post ANON and i think you have taken it out of context. the point being made was just chatter how one disabled person sees it. It was not personally meant. I didnt take it personally. I use both. there was no malice intended. if you need to use a wheelchair or a scooter then doesnt it imply in some way we are DISABLED. I am disabled and proud to be. I have BOTH a wheelchiar electric and a scooter, and to be perfectly honest ANON when i use my wheelchair i do feel more DISABLED then when i use my scooter.
I make no apologise for that. its fact in my life. its not necessarily how anyone else feels and it isnt directed at anyone. why you should have to to anon is beyond me. I find that more upsetting actually.
If you have to say something say it. no one judges anyone on here. we are all in the same boat and we all deal with our own poop our own way.
as you are aware when one has MS one doesnt necessarily think before they write, i tend to write what is in my head before it disappears.
take care and go safe.
PS.
TO ANON. i AM sorry you feel this forum is too clicky. It isnt clicky at all. What happens may I explain without upsetting you. There are old timers on here who have been for years we even had to actually reapply when they changed the format so i have been on MS site way longer then it says, i think i joined back in 2000.
anyway i digress. As long time posters and long time MSERS we tend to come on and when we can we help the newbies as we sadly have a lot of experience in dealing with MS. So there are a number of members who answer. so you will see quite often the same names pop up.
this is not CLICKY jeez its one club i wish i didn’t belong too lol.
If you don’t want us to answer then i will go off and watch some banal poop on netflix and leave you too it. Is that what you want? taking time to help others is hard work and quite tiring. I dont only support this group but others too. there are great people on here who spend time trying to help.
Please rethink about leaving. Perhaps instead you can introduce yourself to us and we can all chat as a team.
if you have already left then this will fall on deaf ears but i hope you havent.
again take care. we are a FAMILY. we look after our own. x
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Again, a great post CC.
We are a big family. Getting bigger all the time. To some people, especially the new joiners or newly diagnosed, we probably do seem ‘cliquey’. As as CC said, partly it’s because we’ve been here longer than this version of the thread has existed. (I really didn’t like this ‘new’ forum when it changed - so I stopped posting for a couple of years. I can’t even remember when I joined - late 90’s?) There’s no ‘old-timers against new’, there’s no ‘our gang against individuals’, there’s just people. Often people who know each other quite well because we’ve been members here for years and have a shared history.
The fact that so many of us have felt the need to post on this thread is because we are a family. I don’t think anyone wanted to ‘gang up’ on you Anonymous initial poster. It’s more that many of us feel quite strongly about our family and want to protect it and our ability to post personal perspectives without castigation or personal attacks.
This thread began as a personal comment / complaint against what the OP saw as an offensive post. The majority of the respondents to that have taken the opposite view and in fact may see the OPs post as offensive. If you take the view that as we in the main have disagreed with you, you are entitled to your opinion and if that leads you to leave the forum again then that’s your prerogative. But if you can reread the first thread in which you felt aggrieved about a post, then reread all of this thread, you could take the view that as a family, it’s a pretty good one.
My point is that we look after each other. Being a family means we don’t always agree. We are generally able to agree to disagree (even when we are certain that we’re right!). If you can get past your feeling of being ganged up on, accept us as a great big family who sometimes squabble, and decide to stay, you’ll eventually feel that you really are one of the family. We won’t seem cliquey, we’ll just seem like friends who often agree and sometimes don’t.
For most of us, this forum is a place of safety. A place for discussion, exchanges of views and information. As CC said, we support the newly and un-diagnosed. Some of those people stay and join the family for a while or for good. That’s as it should be. Many get their heads round their diagnosis (or non-diagnosis) then vanish until they need help again. As a pure guess, I suspect most of us regulars who’ve been here a long time are progressive and/or quite disabled. That’s perhaps why so many felt we had something to say about these two threads.
The real point to this post is to appeal to the OP. If you can’t see our various points after rereading the two threads, then perhaps your decision to leave again is the right one. But if you can see us as friends or a family who look after each other and fiercely defend our right to our own view, then stay, accept that we won’t always agree with you, don’t take opposing views personally and join the family.
Sue
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I wasn’t going to write, for fear of beating a dead horse, but then I had second thoughts.
I’m fairly new here myself and an American to boot. I don’t always agree with the opinions expressed and frequently don’t understand things that are second nature to Brits (PIP, MS nurses, and why in the world do you have to pay to use a shopping cart?!). But not once has anyone ever made me feel unwelcome.
I came here because the sites based in the US are all about the current medications, latest scientific breakthroughs, and all the extreme sports we should apparently be doing. You ask a question and get a vague response beginning with “Well, you really need to discuss this with your doctor.”
This forum is frequented by real people with real problems. We can talk about bird-watching, gardening, and trying to find household help. You can vent when you need to, ask any question about any topic, or just share your good day. There’s always someone willing to lend a hand.
I read about the members who have been in wheelchairs for years, ones who rely on lifts and home health aides. I don’t think “Oh, no! This will be me in a few years.” What I think is “Wow. These people are strong. If they can do it, then so can I when the time comes.”
I like the camaraderie of the older members and the fact that people who don’t post for a while are missed. It lets me know that this is a solid group that has my back, regardless of the fact that I’m still new and not British.
I’m sorry that someone is offended by all of this, but we need a place where we can speak our minds and get honest feedback. When I have questions, I want to hear from the people who have dealt with those same issues, not some politically-correct drivel that begins with “Well, I’m not a professional…” It’s a good site, and it’s the older members that keep it going. Eventually I’ll join their ranks.
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