D. Managing other people – strangers with the chair, health professionals, lovers and family, carers, friends and colleagues
A big part of being a quad is managing other people. Whether you are independent or need a lot of help, at times you will need to ask strangers, friends, lovers and carers to do things for you. At other times you will have to stop them doing things to you.
In either case the best approach is to take control and be calm, directive and unflappable. Equally though, being a quad doesn’t give us the right to be obnoxious, or order our friends and loved ones around rudely or unnecessarily. Everyone else has problems too, often much more significant than just being a quad.
I think there are two different approaches required for managing people. The approach required when you are out and about can be quite different from the approach required in the home.
When I am out and about the situations in which I need to manage people and their reactions to my disability include:
- meeting someone for the first time particularly in a work environment
- when people grab my chair and start pushing without asking
- when I’m out with friends and I need their help
- when I’m out on my own and I need to find a stranger to help me
- in dramatic situations such as when I fall out or get stuck on a road.
In all these cases the most important thing is clarity, confidence and certainty. It doesn’t matter if I am not feeling any of those things I need to find them and convey them so that the people feel I know what I’m doing. If they sense I am confident they can relax, stop feeling awkward, and listen to my instructions.
This is the best approach but it is exhausting. However, if I don’t do this there is a risk that people will injure me or themselves trying help me up stairs or across roads etc. As I get older I feel this obligation more strongly because my friends and family are also getting older. Its no longer ok to just expect them to be able to get me up a stair or two. They may no longer be able to do it or they may injure themselves. This means I need to take more responsibility and be more considerate when I am out and about with them, and not just expect them to be the solution to my problems.
Around the home the challenge of managing people is quite different. For many quads their family members or lover is also their carer. The relationship between a quad and carer/s is complicated, and as everyone knows family relationships are always complicated. Therefore, when carers are also family the potential for bad complications is very great. However many quads seem to make this work, often in combination with some paid help.
Being independent means I have not needed my partners to do my personal care. However, living together and getting around together means they have still had to do a lot for me. In my case, I think this has put pressure on these relationships both from my perspective and theirs. I my experience I think it has usually resulted in both me and them becoming resentful. So I don’t think independence solved this issue for me. I suspect its more about communication. In other words the typical relationship building and maintenance issues that all couples have to deal with.
Similarly, being independent means I have not had to use paid help for personal care for a long time. However, I have seen the way other quads behave and I have had intermittent experiences with it when I have been sick.
Based on this I now try to deal with people that are being paid to help me in much the same way I deal with my staff at work. That means it is not ok to order people around disrespectfully or with a sense of entitlement. Just because I am a quad doesn’t make my needs more important than everyone else’s. I have seen a lot of quads with a sense of entitlement doing this to both their family and to paid help. Equally it is not ok to just sit there and do nothing and just accept whatever is done to you. I have also seen quads do this and I may have been guilty of it myself at times. It is not ok because it puts the responsibility for your welfare on someone else’s shoulders. That is unfair. It is our life and our body and we need to manage both.
What I now try to do is clearly state what I want to achieve, then secondly how I suggest they help me achieve that, and thirdly check they understand what I want and are happy to proceed. Much in the way you would expect a good boss to do at work.
Unless its managed well both the helpers and the helped can become resentful. That is not good for anyone.
Here’s what the experts say
CLICK HERE for an article on the streetsie site that honestly outlines some of the difficulties for lovers who are also carers
CLICK HERE for an article by the late jeff shannon that beautifully outlines the issues involved in using family as carers
CLICK HERE for an article on the yes and yes site by a woman with a partner who is a quad. This one is a lot more rose coloured glasses, and I would say too much so. However, some of the women I have been with have said very similar things to me so it is how some of them feel, at least for a few years
Rule number 16 – Take control confidently, but do it with empathy.