Since nobody had any practical advice to offer, I gave mine. I also thought of blogging about how all these accusations completely missed the point of the dilemma. About how fussing, while better than the horrific prejudice thousands of disabled people face, is not the solution. And about regardless of how well a fusser means, the questioner had to live with this situation, and was asking about how to live it better - and being made to feel dreadful is not going to help her or anyone else. However, I don't have to, because BrennyBaby at NewsJiffy has already done it for me - many thanks!
(Related post: Blaming the vulnerable, from back in January.)
Update:
It got a lot more interesting than that. I did not really expect the writer of the dilemma to see my comment - but not only did she see it, she's posted her original letter and got a really good discussion going right here, so please check out the comments. And please join in!
19 comments:
Hi Alice
Thanks again for being helpful, much appreciated.
Moira (Kate)
Hi again Alice
I left a comment on Richard's BrennyBaby blog which set out my original, edited-out, questions. I'd appreciate your thoughts on them if you're willing.
The comment has not appeared yet as I write this, it has to be moderated. If by any chance it gets lost, I'd like to post again here if that's OK.
ATB
Moira
Hi Moira,
I'm really thrilled, this is like getting a message from a celebrity. And that you took the trouble to go and find my blog!
I just left another comment on Richard's blog but he's presumably doing other things. I'll give him a couple of hours to go and moderate our comments and then go and read yours. I would really like to read your original letter. Please feel free to repost it here! I originally started this blog to write about space, but I seem to be better about writing about people! :-)
Hi Alice
I'm pretty ordinary really, definitely not a celebrity! I was interested in your comment in the Independent because it was intelligent and well-reasoned. Here's my original:
'I have osteoarthritis in several joints including knees & feet. I now walk with a stick & progress is slow. One problem which I hadn't anticipated & which I don't feel I'm coping with very well is other people's attitude. I've just come back from a weekend away, which included a theatre trip for 7 of us, 4 of whom I had not met before. I was pushed to the edge of losing my temper by the others fussing around me & asking "Are you all right?" I must have been asked that 20 times during the evening. My nearest & dearest, bless them, don't do this, it's well-meaning relatives, not-so-close friends, strangers & assistants in my local supermarket (I now shop online). It's very clear that able-bodied people find me a problem, get anxious when I'm in the group & feel responsible for me. I've even been told, "I am my brother's keeper." I can sympathise with their anxiety but it's their problem & I resent their offloading it on to me by demanding reassurance. Is there any way I can respond to the question in a discouraging way without just being rude? And is there anything I can do in my own behaviour & body language to get them to stop pestering me?'
If you have any thoughts, I'd love to hear them.
ATB
Moira
Wow. Just wow. Virginia wasn't honestly replying to you at all, was she? She (or the editor) just decided what attitude to take, took out the bits that would support them, and went with that.
My illness was stomach problems, so not visible - so I was having to constantly either run away and hide or explain why I looked white and sick and was failing to eat a delicious meal, or tell people that, contrary to their accusations, I actually couldn't do X, Y and Z. And as you can imagine, stomach problems cause a certain amount of humiliation.
I need a little more time to think, because right now I'm shocked that things were twisted this much. I thought about my response for some time based on all the people I met hiring wheelchairs, and I'd been thinking about it since last night. Let's transfer the real discussion here, if you're happy with that - anyone else want to chime in? :-)
Hello Moira and Alice.
I'm a trainee clinical psychologist and I've been working for six months in a Chronic Fatigue service. I really don't think your concerns were well represented in Virginia's column, Moira - a lot of my patients (i.e. people with an 'unseen illness') talk about how people try to transfer anxieties onto them. The advice I normally offer (for what it's worth) is similar to what Alice has already mentioned: people will be more anxious if they don't understand what's wrong. If you feel comfortable explaining a bit about what you can and can't do to others, then it might be useful. Other than that, counting to ten always helps...! In all seriousness though, I've never fully understood why people tend to 'project' this anxiety...you clearly understand your own condition (it's your body after all) and as long as you're saying you're okay, and they're comfortable in the knowledge that if you need help you will ask for it, then there shouldn't be a problem.
I'd be interested in hearing how you get on with using humour or changing the subject, and hope you don't feel too disheartened by Virginia's thoughtless comments.
BW
Sarah
I think you just defined journalism:
'She (or the editor) just decided what attitude to take, took out the bits that would support them, and went with that.'
I'd love to hear any other comments or suggestions as to how I can handle this better.
Ooooh, I tried to post a link to here on the Indy pages, but they've started moderating the comments now. I wonder if they will allow mine . . . Hi SarahC - glad you've come here as well, thanks for posting!
I suspect a lot of the anxiety is guilt - they believe (rightly or wrongly, I don't know) that you're in pain or about to collapse and they don't know what to do. In fact, I bet a lot of the anger some people feel towards people with illnesses or disabilities is due to guilt (rather like teenagers to parents, perhaps?). It's silly to feel guilty, but people do. I generally also find that a raised face, an eager voice and a big smile are also good convincers of being fine - and an interest in what's going on around you, which it sounds like you already have anyway.
What do you mean about "my brother's keeper", by the way? Do you mean someone said you are, or they are? I guess it would help if I read the book . . .
I have this problem and the added bonus of people telling me that I don't need a wheelchair when being in one would signifigantly make my life easier.
People either overly coddle me or deny that I have a problem with my mobility.
If I need help, I ask for it, but I usually find that people are just trying to be good people and try to help.
My response to the over coddling is, to joke about it. I have an excellent Yoda routine when I'm using my walking stick, or I turn the question back on them and turn around and ask them if they are alright and if they need any help.
If I do need someone to help me, I always ask them if they would be so kind or if they would like to help me.
If I'm in a large group, I do an announcement at the beginning and say, I'm a bit slow because I have arthritis just be yourselves and if I need help then I'll say, but I'm here to enjoy myself so let's go and have some fun.
This usually works a treat.
Thank you anonymous, some good ideas to try. (I'm trying & failing to picture the Yoda routine, sounds funny so I'm going to have to get the DVDs out).
Re "Brother's keeper", it was a bit cryptic, come to think of it. I knew the quotation was biblical, ie the question was "Am I my brother's keeper?", meaning you disclaim responsibility for someone. I looked it up & apparently Cain said it when God asked him where Abel was. I had had a problem with someone trying to force me into getting a lift home with her, following me in her car like a stalker. The next day she phoned to ask if I had got home all right. I tried to say as forcefully as I could that I found her behaviour intrusive & unacceptable, but she was oblivious. She told me a story about an occasion when she was in a group of hikers, someone was falling behind & when she suggested to the group leader that they wait for the slowcoach to catch up, the leader refused, & asked "Am I my brother's keeper?" This woman was shocked at that & said to me, "Well, I AM my brother's keeper." I just thought, "Well, you're not mine" & have avoided her ever since.
Sorry about the long story, I've tried to condense it as much as possible.
That woman sounds REALLY weird. I don't think I'd keep my temper with someone like that. I would imagine other people who know her have had similar experiences and maybe strategies to deal with her!
I saw your comment on the other blog that people repeatedly ask you if you're all right even if you've already told them you are. That sounds so annoying. It may be they really don't know about walking with sticks so it sounds like they need to hear *something*, whatever it is. Maybe "It's just sticks, nothing more serious than that." Or, "I just need a bit of extra time, but that really is all." Or even, "I need you to stop worrying and enjoy yourself. If I need something, I'll let you know." They want to hear something and it can be easier to just give them something to hear. And it might help them next time they see someone with a stick. Their problem may simply be a complete lack of exposure (which is one reason why I'm furious at all the cuts that target disabled people - they're going to be more isolated than ever when it's for everyone's benefit if people mix more).
I got this from someone I used to work with who had every physical problem in the book, bless her. Every so often she would say "I need to stand up, I'm getting stiff," or "Would you pass me X over there?" But if you offered her something she would say no. She would simply say what she needed. She was very dignified and sure of herself and you felt very stupid if you crossed her obvious boundaries! (An absolutely wonderful and generous person too.)
Fraid I got on my office-supervisor-at-a-charity-for-disabled-people hobbyhorse there, but hope it's useful!
That was a brilliant post, Alice, lots to think about. It's very irritating indeed when people ask me over & over again 'Are you all right?' I meant it when I wrote in my original letter that it must have happened 20 times during the evening - it was 20 times at least! I know from experience that just being pleasant & smiling & saying something like, 'I'm fine, but thanks for asking' doesn't work. I think, actually, that the question is not about me at all, but about other people. It's so frustrating to think that I'm doing something in my behaviour to make them anxious about me. If that's the case, of course verbal reassurances aren't going to work.
I was envious when reading about your colleague - 'very dignified and sure of herself and you felt very stupid if you crossed her obvious boundaries' Yes! That's it exactly. How I wish I'd known her & could talk to her.
I could ask her to come along here . . . and hope she will be flattered not annoyed with me!
Oh Alice, would you really do that? That would be fantastic! Are you in London? I am.
I'm in Wales at the moment but moving to London to study astrophysics in about a week! Just been turned down for a job I really wanted there :-(
I'll ask my boss if she'd like to see the blog, I don't know if she will :-)
To Moira and Alice,
It's Tom (I wrote the comment I believe you have both read on the Independent's website) Just had an extremely interesting 15 minutes or so reading through the conversation between you two.
Firstly, the fact that your original letter has been edited to fit a particular story and twisted to that end, is not only misleading, but at it's core bad journalism. I'm studying journalism currently at university and unfortunately it seems that to some (admittedly a minority) it is considered that the story is more important than the facts.
I'm relieved to see there has been an a large amount of response to Ms Ironside's column, showing that not all share her same aggressive attitude.
It has also been interesting to read your discussion about the issue (and I think there certainly is one to address) Along similar lines, although of course not completely the same, my stepfather's stepmother (complicated relation I know!) has what doctors consider to be Multiple Sclerosis - although a diagnosis can't seem to be confirmed. In her early 40s, the people close to her experienced the rapid physical decline of fit and healthy woman.
Seemingly similar to yourself Moira, she has always been a pragmatic and strong person and her disease didn't affect this. She also requires a certain amount of help (walking is very difficult for her) however I know that she finds fussing and constant attention irritating and patronising. As you pointed out in your original letter, those of us that are close to her do not treat her like a child and are aware that she needs help sometimes and are always there to give it, but do not change the way we are with her.
I can understand the point that has been made by Virginia Ironside that people are just trying to be helpful and polite, but as you pointed out, the anxiety and fear that some people seem to have in these situations is more than just a slight irritation - it's a backwards way of behaving.
You cannot necessarily blame people for behaving like this, only that blogs and posts like these are extremely useful tools in the education of issues and problems.
As I say, have been very interested in reading both of your views around this subject.
Kind regards,
Tom
Thank you for your post, Tom, I'm glad you saw my reply to your original post. I'm planning to add some more thoughts based on Virginia Ironside's use of language in her (non)reply to me which you might be interested in.
Alice, I'm sorry, my post from last night has not appeared. I don't know what I did wrong. It was asking about your job & whether you knew the reason you had not got it. Also about your studies & where you will be going.
Another post of mine has gone missing! I don't seem to have got the hang of this. If it's OK with you Alice, I would like to leave another post on this topic before moving on from it. I'll have another go later tonight.
Hi Moira, Tom, Sarah, Anonymous, and anyone and everyone else!
Sorry you had two posts go missing Moira. I went to look for them and I only saw the one that said the second had gone. It was awaiting moderation. I enable moderation on the blog 5 days after the post was published. That means, if the post is over 5 days old, the comment is held - this is because spammers tend to target old posts. Unfortunately I can't change this just for this post - sorry, and please just continue to leave as many comments as you like and I will come along and show them whenever I can!
Tom, glad to meet you and glad you are studying journalism. I am teetering on science journalism whilst failing to get much of a job in it - not surprising, it's revoltingly competitive! I hope your course and career go well. Following the Johann Hari business (so sad - I admired his writing), there is, I think, more of a citizen based outcry for more fact-checking, referencing etc (so the public can look up your sources). At least, in my field of scientists and skeptics. (By skeptics I mean people who nerdily check sources and confront misinformation; I don't mean cynics or pessimists.)
Moira, I'm moving to London to start an MSc in Astrophysics. You will probably notice this is - at least in theory - a mostly-astronomy blog! I suspect there was a lot of competition for the job I was after; it was with the Royal Astronomical Society. I'm no professional astronomer. I've done other jobs whilst studying by myself - the most recent being running the charity office. Now I'm taking the plunge and hoping it'll get me somewhere - but the detour into working with disabled people taught me so much!
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