In Part 1, a generalised example was given of how one person's help is another person's hindrance.
In Part 2 of this blog topic, I gave reasons for not accepting unsolicited offers of help and to trust me when I say, "No, thank you!" to someone's kind willingness to help with my mobility equipment.
In Part 3 today, I want to continue in the context of chronic illness and disability with more examples from personal experiences of mine and of colleagues. The theme is one of respect when someone says:
"I can do it myself."
For many people with disabilities, it is important to do things independently whenever possible. Reasons for this can include:
- maintaining physical fitness ('use it or lose it');
- maintaining the dignity that a sense of independence brings;
- a sense of control.
Physical Fitness
People who regularly exercise notice the difference after being laid up in bed with illness or after being unable to continue their fitness routine for any length of time. Inactivity can quickly 'decondition' the body.
I live with a chronic illness (MCTD) and it is especially important for me to maintain as much physical fitness as possible because it helps my body to cope with the symptoms of illness. The fitter the body, the quicker it can recover from setbacks. I work hard to be as active as possible.
While it might take a healthy person a week to recover from an infection like a cold or virus, a person with a chronic illness is likely to need much longer to overcome it. For some people with disabilities a setback such as hospitalisation can cause irreversible deterioration of their conditions and increase long-term disability. Therefore, when living with illness or disability, it is extra important to maintain as much fitness and strength as possible.
Dignity
A basic human instinct is the need to 'fit in' and find a sense of belonging. Anyone who is perceived to be 'different' in any way can find this difficult. The ability to fully participate in society is an important element in finding one's place in the world and having a healthy self-esteem. Being able to access employment, education, transport etc. and to be valued and treated with respect by others are important ways of fulfilling that need. This all leads to 'dignity' which is defined in my dictionary as 'worthiness'.
Anyone who has been unemployed for any length of time can describe the demoralising effects of having to rely on handouts and charity in order to survive.
It disturbs me when charitable giving is motivated by a sense of pity. Pity from others can undermine self-esteem and leave a person feeling devalued because it carries unspoken undercurrents:
- that there is something unfortunate or sad about one's existence; and
- the person who is doling out the pity is in a better position and thus superior, placing a sense of inferiority on the person who is being pitied.
Independence to earn one's own income and make decisions about one's own life brings confidence and self-worth through a sense of ability which is so important when society frequently focusses on disability. These issues are very much interrelated with the issue of control.
Control
When one is sick or has a disability, one can lose control of many things in life, including one's own body. Do not underestimate the emotional importance of holding onto those remaining things in life that still can be controlled (although that doesn't mean that everyone with a disability is a 'control freak').
When a 'helper' insists on 'helping' in spite of being refused, the control of the situation is taken away from the person who is perceived to need help. If your offer of help is met with, "No, thanks," your quick acknowledgment of that while quietly going on your way is helping the person to maintain control but, more importantly, respecting them as a fellow human being.
I've seen situations turn into dangerous arguments where the 'helper' insisted that a person 'needed' their help. In these instances it is plain that the 'helper' does not respect the other person.
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Here is a real scenario: While walking in the city with a colleague, a stranger approached and offered to help her cross the busy street by pushing her wheelchair. My colleague refused politely but the stranger insisted despite me and other people attesting that the stranger's help was not necessary.
The stranger suddenly took hold of the wheelchair and started pushing it anyway! It was in a fast, rough manner and was very frightening to the occupant who was now unable to control her movement and was in fear of being injured or falling out of the wheelchair altogether!
There was no respect from the stranger who didn't listen to civil protests. In desperation, my colleague shouted a very, VERY rude instruction telling the stranger to leave her alone and where he could go! Unfortunately, it caused an embarrassing scene and the stranger stormed off, verbally abusing my colleague as if she were the rude party! In fact, the stranger was the rude one by not respecting the wishes and rights of another person!
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After all of that, please don't let all of these issues discourage you from ever offering help! It is important that people still offer to help when it is warranted.
Even if I don't need or want any help, it can occasionally be nice to be politely asked especially when I frequently need to ask for help in other areas of my life. It can be a nice relief to not have to gather up the courage to ask. It makes me feel more confident to go out, knowing that there are people out there happy to help should I need to ask for it.
That's a key (and a delicate one):
should I need to ask.
I have a voice;
I can use it
(and I will) to ask for help should I need it. (I can do it myself!)
Remember, not everybody is blessed with the ability to speak and communicate easily so I am lucky and don't take the privilege lightly (hence this blog). Be respectful to those who struggle.
If someone is neither asking nor obviously looking around for help, chances are that they are okay and don't need any help. Treat that person as you would any other regardless of disability.
Always check that people actually need help at all before making the assumption that they do. How do you avoid an assumption? If your instinct overwhelmingly tells you that someone is in desperate need, go and politely ask them!
If they do need your help, listen carefully–they might need you to do something unexpected–and make sure that you can help them exactly as specified by them.
Everyone is different:
- some people feel validated and acknowledged when offered assistance;
- others feel hassled or threatened.
Please bear in mind that many people with visible disabilities are frequently approached in public places by total strangers offering well-meaning help.
This can become a problem when it hinders a person from conducting their business; e.g. shopping, socialising, transport etc. It can be a physically and emotionally draining. It is a nuisance to be accosted by well-meaning strangers every time one ventures out. It's enough to make one stay at home! Please be aware of this.
Welcome assistance to one person is a rude violation of personal space to another.
It can trigger an emotional breakdown to be reminded by some well-meaning person that there's another part of your independence gone … thanks to a progressive illness you can't control …
So next time you offer people a helping hand and they say, "No, thank you," even if they seem to be struggling, your gracious acceptance as you move along quietly is probably helping more than you realise!
Most of the time …
I can do it myself!
Do you agree or disagree with these ideas?
What is your experience of helping
(either giving or receiving)?
(either giving or receiving)?
You are welcome to share your stories in the comment boxes below.
Related Posts & Links on Lupey Loops
"To Help or Not To Help (Part 1)", blog entry, 29 July 2016: http://lupeyloops.blogspot.com.au/2016/07/to-help-or-not-to-help-part-1.html
"To Help or Not To Help (Part 2): When to Say "No Thanks!", blog entry, 5 August 2016: http://lupeyloops.blogspot.com.au/2016/08/to-help-or-not-to-help-part-2-when-to.html
"Lupus (SLE) Resources", blog page: http://lupeyloops.blogspot.com.au/p/lupus-information-resources.html
"MCTD Resources", blog page: http://lupeyloops.blogspot.com.au/p/blog-page.html
"Scleroderma Resources", blog page: http://lupeyloops.blogspot.com.au/p/blog-page_6.html
"Sjögren's Syndrome Resources", blog page: http://lupeyloops.blogspot.com.au/p/sj.html
Reference
Delbridge, Bernard et al. [editors], The Macquarie Dictionary Third Edition, The Macquarie Library Pty Ltd, Macquarie University NSW Australia 1997.
My Father is now a regular wheelchair user, we have found that people talk to me rather than talking to my Father completely disregarding him as a person. Sad but true. On the whole I find most people helpful with doors and such when out shopping. My husband always uses a stick but is an occasional wheelchair user so far no real problems.
ReplyDeleteThat is sad that your father is being disrespected by people talking over and around him instead of to him. How rude! Some people see physical disability and assume that there is some mental incapacity too (including some doctors and medical people who should really know better) and it is so wrong!
DeleteWhen I was younger (and not a wheelchair user), I had a close friend who did use a wheelchair and we would experience the same thing, often in shops. My friend would ask a question of the salesperson and then the salesperson would tell me the answer. Even worse, they would sometimes then ask ME questions about my friend's query to which I could only shrug my shoulders and say "I don't know, I'm not doing the asking," and would redirect them to my friend.
When the salesperson started talking to me, I would break eye contact and look at my friend, hoping that the salesperson's attention would follow to my friend and it often worked but it was a subtle method.
What do you do when it happens to you, Lorraine?
I wonder how others have dealt with this phenomenon. Perhaps the wheelchair user should interrupt and say, "Excuse me, I'm over here!" ("and so is my money if you want a sale!") and demand the attention of the sales person but not everyone has the breath or capacity to speak loudly enough in that situation. Why should anyone need to anyway?
These days, as a wheelchair user myself, I have no patience for rude people because that's what it is: rudeness. I wonder what would happen if I responded by talking to my companion about the salesperson in the third person. Maybe that would shock them enough to realise something was wrong and get the message.
Often people don't understand something until they are in the situation themselves.
I'm glad that people are helpful for you most of the time. I like to think that people are better educated these days but obviously there is still work to do. The sharing of stories is a great way to get the message across and make people think.
Thank you for sharing yours and best wishes to you, your father and your husband on your outings.
Oh Jodie, don't even get me started! It is so nice when people ask first - and accept the answer!
ReplyDeleteSorry, Cat! I didn't mean to get you started. You certainly got me started, didn't you? (Three blog posts later!)
DeleteLet's encourage the nice things!
I am sorry about your illness. Keep sharing your beautiful spirit ♥
ReplyDeletesummerdaisycottage.blogspot.com
Thank you, Summer, for your kind words.
DeleteHow scary for your friend in the wheelchair, that must have been so frightening. I have to admit I am the first one to jump in and offer help, I work with children with special needs, I have my whole life so I feel like it is just a part of me. Yet I sure hope I would listen to someone if they said no and not push them, independence is important for everyone, I hope I can fully understand that when offering help in the future.
ReplyDeleteMeredith
Hi Meredith,
DeleteYou are so genuinely caring and conscientious I can't imagine anyone ever being offended by an offer of assistance from you. I imagine that your expertise would enable you to have a good sense of 'when' and 'how' to do it.
Often when I visit a new place, I like to 'have a go' at doing things for myself but it is reassuring to know that there is someone available to step in and 'rescue' me if I got out of my depth.
For example, if we were out together and you offered to push me in my chair and I said, "No, thanks,": if you were still happy to help later, it would be quite acceptable to say "That's okay, I'm happy to help if you change your mind." I might be embarrassed by having to give in and ask later but if I don't try these things for myself, I will never know if I can do them.
If I go somewhere and discover that I can access it independently, it gives me confidence to know that if I should ever need to go there again, I know I can do it myself. If I try it out and it is too hard, I will give me the confidence to organise extra assistance for future visits. There's a practical purpose for "doing it myself" and not just bloody-mindedness! :-)
Like a child learning new things, there is a risk to be taken. With each success and failure, I learn something new about myself, my limitations and abilities. If we don't try, we will never know, even if it means having to lose some face and give in and ask for some help in the end!
I do hope this post didn't leave you second-guessing!
Hugs xx
I don't know if Norwegians are less helpful or if it is just me, but in periods when crutches are needed, I have never been offered help from anyone. In fact, I have often had people let the door go in my face. I have often thought how much a little kindness would mean, even if it only meant holding the door open or mooving aside so passing by with crutches would be a little easier. Of course noone should force their help upon another person, but offering to help even if the recipient politely declines, well that is a good thing in my book. Pam in Norway
ReplyDeleteHow horrible, Pam, to have someone let a door close on you! That's horrible for anyone but for someone on crutches, it's plain cruel and nasty as well as rude!
DeleteIt can be tricky enough trying to balance and manouevre crutches and when both hands are busy with the crutches, how are they supposed to be freed to turn a door handle or hold a door open? Sometimes I think my wheelchair looks easier to manage than crutches.
It's a common courtesy to hold a door open for the person following whether they are on crutches or not.
The point of my post was not to discourage people from offering help. I too, find it nice to be asked occasionally. The point of this post was to explain why someone might refuse an offer and not to take it personally; also to explain why an offer of help may be returned with a less-than-polite response. Some people have been 'helped' in the wrong way so many times that they have become too troubled to be able to respond in a polite way.
It doesn't hurt to ask politely whether someone would like some help. It also doesn't hurt the respondent to reply politely, "yes, please" or "no, thank you". Why can't people just be nice and respectful towards one another?
Sometimes I think people can be too quick to take offence at genuine politeness and others are too selfish to bother thinking about the needs of anyone else.
At least, in our own circles, we can choose to not be that rude person, and no matter how frustrated we feel, retain our own dignities, although I must admit that sometimes, like the 'crossing the road story' above, rudeness can only be conquered by an equal force - sometimes you have to 'speak their language' (of rude people) in order to get the message across!
May people wake up and be kinder. My wish for you is that help is forthcoming when you need it and for life to get easier day by day.
Take care and best wishes for your better health. I appreciate the time and energy it must have taken you to leave a comment.
Thank you, Pam xxx
Could there be a 'fear' of disability in the Norwegian society?
DeleteSometimes when people see someone or something different or challenging, they are not sure how to handle it so instead of being courageous and facing it, it is easier to turn away and pretend they cannot see it.
That's not very helpful, sadly.
Had a day of feeling sorry for myself yesterday, have those from time to time. I have somehow become invisible since I became ill, not easy. I used to work as a general nurse before my illness and I must say I have come across some terribly rude disabled people also. I think what I wish, like you said, is that people would treat eachother with respect and kindness. A society like that would be a nice place to live, disabled or not. Blessings, Pam in Norway xxx
DeleteIt sounds like you have been feeling isolated Pam? I'm sorry that you have had a difficult time recently. It is interesting that you used the word 'invisible'. I don't know how old you are, but I once heard a social commentator lamenting that once we get to 'a certain age' we become 'invisible'. I'm not sure what I think about that one but I do hope that you manage to be noticed and heard. It is important to have your needs met. It's a shame that sometimes it takes a fight to achieve that. Hang in there. wishing you strength. xx
DeleteAn important discussion. Please read: https://badcripple.blogspot.com/2019/01/unwanted-help-and-dangers-of-ableism.html?m=1
ReplyDelete