Institucional: Se ocupa de los objetivos e intereses de cada uno de los actores interesados, sus capacidades, su compromiso y actitud para buscar

In this chapter I have provided a snapshot of each woman’s narrative. I feel it is important to include these excerpts to gain a sense of the women involved, aside from quotations included in the discussion chapters. Weiner-Levy and Popper-Giveon (2013) have used the term “dark matter” (p.2177) to describe those aspects of qualitative research that are suppressed during the data analysis and writing phase. From the abundance of material researchers collect, analyse and write about, only a small percentage actually reaches the ‘final’ audience (Weiner-Levy and Popper-Giveon 2013). I hope by including these narratives I can better (re)present the participants and provide a fuller insight into their lives. The narrative selections are aimed at covering different aspects of the women’s lives and are amongst the most emotive reflections. They include some punctuation to aid the readability.

Andrea

I have been in a chair permanently now for eighteen months. For the six months preceding it so for two years it has been you are gonna end up in a chair probably and then for eighteen months that was it and I am in it now forever. I went from walking with difficulty I would say there were three weeks in terms of not being able to walk at all but I had about maybe a year before that where I was using crutches or sticks because any distance then I would start to stumble or I wasn’t able to walk properly. If I rested then it wasn’t too bad again so it was manageable but yeah over the course of three weeks I had a flare in my spine and then that’s how it happened. It was difficult because in some ways it might have been easier had I had a sudden acute injury because sort of like bang this has happened and that’s the result whereas my condition is a bit more kinda windy you know and meandering pathway where it takes you you aren’t quite sure what’s gonna happen with it. It was very difficult to get my head around and having been well and active beforehand it was quite a new thing.

After every big event there was a time of adjustment and obviously after my eye there was a time of adjustment but not really that much there was nothing really tangible that I could say I can’t do this because I can’t see out of that eye so I got on with it quite quickly. I would say two main times were when I was in hospital for all that time there was a time in the middle when I thought I can’t get out of here you know I felt a bit like a prisoner and I could not get out and it was driving me nuts so I probably had a week or two of being insanely grumpy during the time that I was in hospital. Then it’s picking yourself up because you’re focused on the discharge date focused on when I get out of here I will be doing this. Then you get home and the reality sinks in so I would say it was after I got home sort of a honey moon period of a couple of weeks and then after that I was just wow this is this is life now that’s pretty hard to adjust too. I think it was pure depression to be honest just not really being bothered about anything it is very difficult to shake it. I was having this conversation with mum cos I find that just now if I get an infection or get a bit sicker than normal I have to really adjust my head and say now hang on a minute there is stuff here that is annoying you that doesn’t need to.

119

I probably sound mad but you think that people are gawping or staring more which they are probably not they are probably just interested but little things like that tend to annoy me more when I am not feeling top of my game and I found that at the start I felt I was literally going down the street people staring. I think everyone thinks that at the start I mean you just get used to it don’t you but yeah it was a combination of that and finding it very difficult to adjust to peoples’ attitudes and sort of getting fed up of having to answer questions about your health just being like guys let’s just talk about the weather I really don’t wanna have to update you about this and as a result I kind of actually I can’t be bothered going out I can’t be bothered doing stuff cos it’s just too much hassle. It took me a while to kind of pull my head out and go hang on it’s only myself here that I’m holding back it took a couple of months to get through that. I have got a strong faith so I think that helped I would have been pretty lost in terms of a big chunk of comfort if I had not had a faith but family support friend support has been great.

It just takes a while to get your head adjusted to it I think even now I will still try and jump out of bed and then go oh right that doesn’t quite work. I have spoken to other people and they have said the same thing cos I remember once I was sitting and looked down and saw this huge spider and I am not scared of spiders but no one likes them. In my head I was saying get out of the way and it was a split second of why aren’t you moving and it’s every now and again you get things like that or you go a bit over balanced and you fall out [of the wheelchair]. That has happened I have fallen out once or twice and you go how did that even happen and then you realise oh right well and it’s quite embarrassing in public.

Angie

Then you start finding out all the problems that come in with using a wheelchair the likes of pavements access to certain places and things like that and how hard it is to actually self propel yourself. It didn’t help with the shoulder then either I used to have a friend on the squad but she was a physiotherapist but she was a wheelchair user herself she used to teach young children how to use a wheelchair. That would be a great idea why don’t they have something like that for adults as well. I think it’s even harder for adults because they tend to be a bit more tentative shall we say but yeah it took quite a bit of learning that and you don’t realise going down hills you think oh this is great but you have gotta stop at some point you try holding the wheels I tell you what I had blisters on me hands until I heard why don’t you wear gloves simple little things like that. Carpets as well is a real nightmare access to hotels and what hotels consider as being a suitable disabled room was another one quite surprising. If they are going to promote themselves as having disabled access I think they should have somebody in a wheelchair to say well come and try this. I’ve had to change rooms several times because I couldn’t even get into the room with the wheelchair and there just wasn’t enough room or they think that having a bath isn’t a problem yeah it is I need a shower and oh yes it has got a shower yes but it’s over a bath it’s just stupid things that you don’t realise at the time and have no doubt that they don’t either because they don’t ask the right people.

It’s quite a psychological blow people tend to view you differently as well because they don’t see you it must be the way the natural human vision is more or less on the same height as their eye sight is. If you are below that it doesn’t matter how big you are if you are below that you tend to be not to be seen they also tend to speak to the

120

person that is with you because they are standing up. In my experience they don’t seem to think that you are able to talk or think intelligently. I think they are kinda embarrassed how do they react to you what can they say because of all this political correctness rubbish children are much better at it because they will just point and say why are you in a wheelchair what’s wrong with you. Of course Mummy and Daddy are saying shoosh shoosh and no just say it how it is really so it was just unfortunate it happened I have a pair of legs that don’t work very well. I mean I have given some people a shock at times I have been in the wheelchair and I can stand up and it’s with difficulty to get my balance but I have got up out of the wheelchair and stood up with my stick to stretch and suddenly they realise oh my she isn’t as fat as she looks cos when you stand up things tend to look a lot slimmer but more than that is the fact at how tall I am. I think I have shrunk quite a bit now I used to be five foot ten but I am now five nine or just slightly under because of the spine compression and quite often I am quite a bit taller than the rest in the company and they suddenly think whoa.

I had to stop the horse riding quite a while before so I think sort of 2000 the Christmas of 2000 my friend Susan bought me a come and try voucher for archery and of course I remember thinking at the time god she’s not going to be a friend for much longer bearing in mind she was my bridesmaid at my wedding so I had known her forever you know. I was thinking what is she doing this for it’s a bit cruel like I was in one of those in that sort of oh woe is me stages. However I had always wanted to do archery I admit that and she knew that so I phoned him up eventually and I think it was in about March when I got it at Christmas and it turned out that the man himself was disabled and so I arranged to go along and have my wee session. It was blumin’ brilliant and I found I could do it at that stage I was still standing and did the course you have to do a sort of safety course and show that you have got the knowledge then bought a kit and then started competing I think it was sort of it would be less than a year and I started competing. I made it to Korea in 2007 so I was phoned up and asked if I would like would like to go to Korea to compete with the development squad so oh I thought for a matter of seconds and I said yeah fine I’ve got a passport I will be there. I got on well there and then it was the review that come after that I got onto the [national] squad.

Anna

I think it gives me more umph to go and do everything that I can I think that with the appropriate support I can go and do whatever the hell I want to do. They said that I might find finishing my education difficult but with the appropriate support there has been no problem. It’s been hard work yes but University is supposed to be if there are not stupid rules like the Paralympic stuff then I can do whatever I want its bureaucracy and that sort of thing and stupid access that stops me far more than me stopping myself doing anything I don’t want to do that I will try and find a way to do it for pretty much anything.

I think it has sort of grown over the years that I have had complex regional pain syndrome (CRPS) because part of it is because I don’t feel touch as touch I feel it as touch and pain I used to be very, very careful about what I did so that people didn’t get too close to me and weren’t going to hurt me. I found over the years I have modified that ok I do get a pain spike if someone comes too close as I expect it’s going to hurt but I’m not going to let that stop me so

121

much as it used to. That sort of didn’t come just from me I had help form physios to learn that but in a broader sense doing what I want and not being penned in. The CRPS that’s been a really long time it took a long time to work out I can actually do things like cook for myself because at University our kitchen was horrible so I didn’t go in it. Then I had a boyfriend and I spent a long time thinking I can’t do this until I would get myself into a situation where I would have to and then think I can and that would give me a bit more confidence so then I would think I’m going to do this and in circumstances where I’ve been sort of knocked back where I’ve gone somewhere and there is only one seat on the plane that I can go on or they have sold me three seats sideways and then there are barriers sort of arm rests and then there are the fire exits so I had to try and get my money back we did try and get advice from the airline. That knocked me back for a long time I wouldn’t travel so I stuck to wherever I could get to in a car and then decided actually that is stupid I have a friend who is getting married in Canada I am damn well going to her wedding. I think it’s the more you realise there are ways around it you can do things yes sometimes you are going to have idiots and will have to work around them but you can do it and that gives you that bit more confidence.

Archery is a large proportion of my life but it isn’t everything but obviously with the disability because it is there all the time I haven’t had a pain free day for 11 and a bit years. It effects anything from I would say getting up in the morning to going to bed at night but it then effects all through the night as well so I think the disability still comes above the archer but I think at the moment I will admit at the moment archer comes above doing a PhD. That may be because I am doing a competition this weekend and during the week I was organising a have a go for the homeless centre in town this week so I have been doing a lot of archery stuff this week and the PhD was at the beginning of the week. I’ve had a lot of archery and some of my archery friends came over last night so but yeah the disability is more all encompassing than the archery but the archery is a very significant part of my life and I only really realised that when it was looking like it was going to disappear. I hadn’t realised it up until that point I might have been competing three weekends out of four or training four times a week but I didn’t realise it I didn’t appreciate how much it meant until it was going to disappear.

For a time I was very ambivalent towards the archery I was struggling to find the motivation to go and train I was not training for a bit and that had a knock on effect on my performance. I then came back and I was thinking well I’m not shooting as well as I should be is it worth the effort. I’m not getting back into it and thinking right I’m competing I need to be doing better and I can understand that my performance was effected by the little wobble that I had earlier on in the year and shooting from the stool as well that was always going to be different I now accept that but the archery is definitely important to me and definitely when thinking I need to go and train when it’s late at night and I’m tired no I need to go and do it and I will feel better once I have done it.

Blair

A lot of people find it hard. I know so many people who have had a disability diagnosed and then are just like I don’t know what to do you know I’ve got this I can’t do this. That’s what a lot of people are like but I’ve always said that can’t is not actually in the dictionary so it shouldn’t be a word we can use. For me when I found sport