In 1994 I broke my neck (C4/5) in a diving accident. I was faced with two options. Either I could return home and live with my parents, or I could have a go at living on my own and try and establish an independent lifestyle. I decided to live on my own and that was when personal assistants (PAs, carers, care assistants, care workers etc) entered my life. The nature and level of my injury has meant that I have had 24 hour care since my accident. On many occasions I have been asked what it is like to be dependent on someone else for so many things, and this is an attempt to shed some light on the experience.

On the 30th of June 1994 I was an independent, spontaneous young person in complete control of my day-to-day living. The next day on the 1st of July 1994 I was a tetraplegic entirely dependent on others for every aspect of my daily living, from getting up in the morning to going to bed at night and everything in between! Since that day I have had to ask for many things that people take for granted. I have to ask to get up in the morning, I have to ask when I want a drink, I have to ask when I want food, I have to ask when I want to brush my teeth, I have to ask when I need to go to the toilet, I have to ask when I want to go out etc etc etc.. As a result everything takes that much longer to do. If someone else wants a drink from the fridge they simply go and get one, whereas I need to call somebody, explain which drink I want, how I want it served. This process probably doubles the time it takes to perform the simple task of getting a drink.

This dramatic change takes some psychological adjustment and can be frustrating at times. Even now more than 10 years after my accident I can get extremely frustrated. Sometimes those frustrations spill over and I can become quite short with people. Most of the time my PA will bear the brunt of this frustration, but it is important that they remember that the source of the frustration is not them personally but a lot more to do with my situation.

As a result of this situation I run my life on a pretty strict, almost military routine. Each morning I get out of bed in pretty much exactly the same way, and each evening I go to bed in pretty much exactly the same way. This serves two purposes. Firstly, the quicker by PA learns my routine the less I have to instruct them and as a consequence the less I have to consciously think about the mechanical processes other people take for granted. I often try to explain to my PAs that while, say, getting me up in the morning is part of their job and if it takes all morning that's their job, for me it is simply getting out of bed. Something that needs to be done for me to get on with my life. So the less time it takes and the less I have to consciously think about it the more I can focus on the rest of my life. The second purpose served by my routines is that things don't get left out. It is much more difficult to go back a few steps and do something again for me than it would be with somebody without a disability.

Another issue that can arise as a result of me having to ask someone else to do so many things for me is the question of what is "reasonable" for me to ask them to do? Some people like gardening, others like washing the car. Some people are happy cleaning all day, and some people really don't like cooking very much. So what is it reasonable for me to demand of my PAs? My rule of thumb in this regard is that anything to do with my body and my personal care is nonnegotiable, and everything else is open to negotiation. For example if I want to be repositioned in my wheelchair 20 times until I am sat just right, or if I want my face washed in a particular way and my hair brushed "just so" it is reasonable for me to ask that of my PA. I will not however demand that they wash the dishes in a particular way as long as they come out clean in the end!

However tetraplegics decide to organise their care (and each person does it differently) the bottom line is that we end up living with our PAs. This means that on a regular basis I invite complete strangers into my home and have to make them feel as welcome as possible. Inevitably I also entrust them with complete access to my home, car, bank pin numbers and all sorts of other aspects of my life -- usually within a very short time of having met them. This really is an act of faith and requires me to put my complete trust in relative strangers for my health, welfare and well-being. Occasionally this trust is betrayed (I have had things stolen from me, telephone bills run up and other unfortunate things) but I must say that in the 10 years since my accident it has only been broken on a handful of occasions. This represents a tiny proportion of the number of PAs I have known, but it does happen.

So here I am living with somebody out of necessity, not choice. And it's not like sharing a house with someone because we are pretty much together 24 hours of the day. In order for it to work good communication is essential. This sounds simple enough but given the complicated relationship that exists it is not always that easy. On the one hand I am the employer and therefore theoretically in a position of authority, but on the other hand I am entirely dependent on the other person for pretty much every aspect of my life, which gives them no small amount of power. So if I am not happy with something I need to communicate that in such a way that they don't end up storming out and refusing me the help that I need. Interesting.

So where does the relationship go? Well the employer/employee relationship is not enough in and of itself. There needs to be some element of friendship for it to work on anything like a long-term basis -- and in this sort of care work long-term not much more than a year. I remain friends with almost all of my past PAs and have even been invited to some of their weddings. That is why I prefer the term PA (Personal Assistant) to carer as I feel it better describes the nature of the relationship. On one occasion one of my PAs was asked by a friend of mine "Are you looking after Brian?" His response was enlightening. "No, Brian looks after himself, he just tells me what to do.".

As I said earlier my PAs are privy to almost every detail of my life. They know what I do, where I'd do it and who I do it with. They know my bank codes and where I keep my spare house keys. They know what radio stations I listen to, what TV I watch, who my friends are (and often what I think of them) how much I drink and so on and so on. It really is essential therefore that they respect my confidentiality and don't spread details of my life inappropriately. You would be amazed what has been blurted out in social gatherings by some of my less than guarded PAs. And it's not just confidentiality, discretion is a must. For example not many people appreciate what is involved for me in the simple process of getting out of bed. This can, at times take up to four hours. So when somebody phones me at 11 a.m. and my PA answers the phone and says "No, I'm afraid he is still in bed." the person on the other end may well simply assume that I am just a lazy person! While this may or may not be true a more discreet response would be that I am "unavailable".

There are of course other social implications of having a PA. My friends all need to understand that if they invite me round to dinner they have to cater for two people. In addition to this many people don't fully understand the role of my PA, and this can make them feel slightly uncomfortable having these people around in a social context. Once again there is something of a balancing act required. On the one hand it is inevitable that my PA will join in my social occasions, but there may also be times when I want to spend time with my friends "on my own" and it is appropriate for my PA to discreetly withdraw.

Despite the frustrations that arise from living with a Personal Assistant the bottom line is that without them I would more than likely be living in an institution! They are fundamental in me achieving an independent lifestyle. I recognise that it is certainly not an easy job and were I still able-bodied I'm not sure I would be able to pull it off. So I really do appreciate the people who are willing and able to enable my life, and I am extremely grateful for everything they do.

It is of course by no means all hard work and I have had some fantastic times with the people who have worked with me over the years. We have travelled to Africa and on to the continent and got stuck in some ridiculous situations which we have laughed our way out of -- you can either laugh or cry! As I said earlier I remain firm friends with lots of the people who have come into my life in this way, and I'm sure that there are plenty more friends to be made in this way.