David - Interview 08

Age at interview: 23

Age at diagnosis: 2

Brief Outline: David has had twenty-seven operations in twenty-three years - the main ones including knee and hip replacement, leg straightening and spinal fusion. This meant that he has missed a great deal of schooling but he has always been determined to continue with his education. He finished his GCSE's, did his A' levels and has recently finished his university degree.

Background: David is a university graduate. He was diagnosed with juvenile arthritis when he was just two years old. Lives at home with parents and sisters. He drives a specially fitted car and enjoys his independence. Ethnic background/nationality' British.

More about me...

David has lived with arthritis most of his life. He was diagnosed when he was two years old and was put on steroids. Twenty-two years later he is still on steroids - a fact he finds distressing - but as he explains - it is because his arthritis is not getting any better. As a child he remembers having very high temperatures and being unable to moved. During his childhood and teen years he was in and out of hospital on a regular basis. There is no history of juvenile arthritis in the family but both his grandparents had developed it later in life.

David says that because he developed arthritis at such a young age his growth, bones and muscles have all been affected by arthritis. David cannot walk far and when going out needs to use a wheelchair.

David has had twenty-seven operations in twenty-three years - the main ones including knee and hip replacement, legs straightening and spinal fusion. This has meant that he has missed a great deal of schooling but he has always been determined to continue with his education. He finished his GCSE's, did his A-levels and has recently finished his university degree. He admits that it was hard catching up with his school work after weeks or months in hospital but he was determined to do it. He says that disabled people find it particularly hard to find employment and therefore, he understood that he needed all his qualifications in order to improve his chances of finding a good job. 

When he was on holiday with his family in the USA he became very ill and almost died. David refers to this episode as a turning point in his life. For instance, he says that during his school years he was shy and lacked in confidence and did not get involved in many activities. After his 'near death' experience and at university he became more confident and developed a very good group of friends and enjoyed student social life like everyone else. 

David says that his family have always been there for him and that he probably is closer to his parents than most 23 year olds, but also emphasises the fact that he is older now and in control of how he chooses to live. He manages his own medication, hospital appointments and because his home is fitted with special devices, he is able to do most things for himself, like having a shower, opening doors, etc. However, he is restricted to how much he can lift and therefore can't do certain things like cooking. He values his independence very much and 'hates' asking for help. An example of this is that he stopped using socks sometime ago because he cannot put them on himself and prefers to go without rather than asking for help. David says he will ask for help but only when absolutely essential.

Says that his arthritis has remained the same since he was first diagnosed at the age of 2½. He...

Well I am now 23 years of age and I was first diagnosed when I was two and a half obviously I can't remember how it started because I was only a boy but from what I was told it just came on, you know, extremely suddenly, my arthritis. You know, so it, you know, was pretty much a shock. And in those you know days, you know, arthritis in younger people wasn't heard of. So at the time I mean, the doctors didn't know what was wrong with me and it nearly took about three, six months to diagnose. You know at the beginning I was put on steroids which was the only thing in those days. If I hadn't have had them then I would have died basically. But what ' but what to me is what is distressing is that I am still on the steroids today. And I can't get off the steroids. So I have been on them for what, for 21 years and there isn't a day that I haven't took them. So for me that is what is different about my arthritis is the fact that - is the steroids, the fact that for the last 21 years it is not getting any better.

He has physical problems created by the arthritis and the many operations he has had to have on...

I would say when I was young, the earlier days I can't remember, but you know I had very bad fevers, extremely high temperatures and basically I just couldn't move. You know, I mean I would wake up in the morning and I would just be stuck all over. You know obviously that is quite a shock. But anyway all my joints were hot, knees, ankles, arms, hands. And anyway this went on for years all through my school career you now right up until I was a teenager, you know, I was in and out of hospital on a regular basis. But as time has gone on the damage - it is not so much the arthritis now that is affecting me, but it is more the damage by the arthritis. And so I don't get the flares today and the high temperatures but today it is the bone damage which I suffer from. And because I am only small. I am only four foot six obviously I am not as tall as anybody else and so because I have had it from that young an age you know obviously my growth, my bones, my muscles are all totally they are rubbish because of me arthritis. But as I said nowadays, since I was sort of eleven, twelve, I haven't had the flares. It has been the damage and of course I can't walk very far now and when I go out I have to use a wheelchair. I use an electric wheelchair because I can't walk far. 

I will tell you the main ones. When I was seven because my legs when I walked when I walked I was going out, so me legs were all bent, my hips. So I had to have I can't remember what they called it. But I had to have them basically broken and straightened. So they straightened my legs. That was when I was seven so I spent six weeks with my legs - both my legs in plaster. So that was obviously quite hard at the time but in my teenager years I have had both my knees and both my hips replaced that is another four operations. I had my first hip done when I was eleven and I was the smallest person in the country or something to have a hip replacement. But because of the bones and because I had arthritis since I was two, the damage then had already been done. So I mean can you imagine what it is like now, but when I was eleven my hip just totally gave way. And there was hardly any bone there at all because it had just been eroded by the arthritis. So that is why I have had me hips and knees replaced and when I was 15 I had my spine fused and you know you have got the vertebras in your back well I have had the top two of those fused together and I have had you know the, you know peg what your head sits on I have had that removed because basically all my spine was crumbling, the vertebras, and they are supposed to be like in a square but they are more like triangles because it is just crushing and it is still happening now. I have got to have it down again. And then the next two vertebras down I had done I have got to have fused again because it is just crumbling because of the arthritis. So that was a major operation that was. I had to wear this halo on my head and I have still got the screw marks. I had to wear that for four months that was a major operation. If I have it done again it won't be so big because you know obviously that was eight or nine years ago and things have improved since then. But you know eventually I will have to have them all fused. You know I will just get stuck like that eventually and I won't be able to turn my head. 
 

He doesn't like relying on others to help with daily activities but knows when he needs help....

I have got two friends at the moment that are both in wheelchairs and far worse than me. You know they need help, you know 24 hour care, you know but I don't need 24 hour care I can do a lot of things for myself. But I do say to people you can take heart from that. If they can do it, why can't I. Do you know what I mean. So you can learn from other people a lot. I have become a lot independent since I started university, you know and you just see other people and you think you know I want to do that. You know, you don't want to be relying, I mean I hate relying on other people. You know. I hate relying on people and if I drop something on the floor you know I hate asking people to pick it up you know. I absolutely hate it. You know in case people moan or something. But there are some things I just can't do so I have to have some help.

Well around the house you know. Well for instance I can't put socks on and so I don't wear socks. Right. I haven't worn socks for five years. I know it sounds crazy but because I can't put socks on I don't want to keep asking people. I mean in the morning I have to get up myself, dress myself, so there is nobody here to help me put my socks on. So the simple solution is don't wear any socks. You know what I mean. I just can't do it you know. I can't bend down that far. I can get my shoes on because I have got like sticks etc that is easy. But I can't put my sock on. So I don't have any. I don't even have any socks. I know that is only a small thing but it is something I cannot not do. I couldn't do it to save my life. So I just don't wear socks. You now I can't, I mean in the kitchen we have got low work surfaces but I can't really cook so well because I can't lift the pans etc. And they are too heavy and I haven't got the strength. And I can't stand up for a long time anyway. I can only stand up for five, ten minutes at a time. So anything that involves standing up you know, for a long time I can't do. I can make a drink, I can make a sandwich, do the basic things but I can't cook a meal. Do you know what I mean. Because I can't cut things as well with a knife or something because I haven't got the strength. You know. But obviously I can't walk far. If I want to walk to the shops, I can't walk to the shops. And I know I can't play sports but I can do most daily things. 

Back in March I learnt to drive. So I have got my car out there is mine. That is probably the best thing in the world because at least I can get to places without paying taxi fares and what have you. As you know it is expensive. But yes, that is probably the main. Having the car that is obviously the main boost is the car.
 

He was diagnosed with arthritis at 2 years of age. Suspects that it must be worse to be 'normal'...

When you were growing up, mostly when you were a teenager did you think why me?

I don't know really. Because I have only had it since I was two, I mean I don't know any different. So in effect I have never been in the playground playing football. So you know, I have never experienced being normal, although I am normal in lots of respects you know. I am not you know, I can't run around and play football. So in that respect I have never experienced that. So I would say that what you don't have you don't miss. So because since I was two, you know, I mean it is not like, there are people out there who have been non disabled up until they are 12, 13 and then they have become disabled so I could imagine that would be quite hard. Because you have had all those years of normality and you have grown. I mean I have never really grown because I got it when I was two. But there are people out there I know that have become disabled at 12, 13, 14 so they have had that chance to grow, they have had that chance to interact with people and then they have become disabled. I could imagine that that would be very hard. But I don't know what it is like because I don't know. But in that respect you know, I think, I don't really say why me. Because in a way I don't know any different, you know. So it is hard for me to look at someone and think oh you know, I would like to be like that because you know I can't really put myself in that situation.

Says that young people on medication ought to be very careful when drinking alcohol. He is not...

I can't remember. I mean it has always been said that you shouldn't drink or you should drink in extreme moderation. Because you know you are on the medications and that you shouldn't really drink. Or if you do you have to be extremely careful. I mean I have always known that anyway, and I didn't really drink up until I went to university and you now was when I was 20 and I mean it is only in moderation now. Now I am always extremely careful but there is probably some people that shouldn't drink at all. Because of their illness etc. So be extremely careful.

Yes and does alcohol interfere with your medication in your case?

Well I think it' I don't know of any effects from it. I mean I am never, I mean I am on drugs that you can't drink or you shouldn't drink or only have a little bit but I have never been affected by it. You know I don't get any reaction you know so I can still have a good time, if you like. And no there are some people that it probably would affect. Everyone is different and they can take certain things.

He has seen doctors and nurses for so many years now that he understands a lot of the medical...

Well fine when you were in the child based clinics you know, and the doctors talked to your parents. They don't even look at you. You know they just talk to your parents. Just saying he has been on 7 mg now for. And you are thinking yeah I am here but you know what I mean. But that is a bit annoying but I am not being funny when I say this but I understand quite a lot of the language because I have been involved in the hospital so long and I have done stuff for the hospital. You know advising young people etc. So I do know a lot of terminology so, I mean, I know I am different in that respect, though a lot of people think what the hell is he on about, you know, but I do understand a lot of the terminology. And when they say you know the sino fluid, I know what that is. It means the bumps, you know, so I do understand a lot of that, but nowadays in the adult based clinics if I don't understand I just say yes so what is that in English. I do have quite a - with my doctor now, the whole team, I do have quite a good relationship. You know I am a bit cheeky, but, you know, they are more like friends in a way, you know, well they might as well be friends because I will be going there for the rest of my life. So you don't want them to be strangers, you know. So in that respect you know when I go now it is very, you know, it is relaxed. You can go in there and you just chat normally and you might say, the doctor might say something, you know, like you are going to have a scan or something, might give you the results and I will say yes, what is that in English you know what I mean. I mean I can email my doctor, you now you wouldn't be able to do that five years ago. I mean that is how good a relationship I have got. I am close to the department and if I have got any problems or want to ask questions I can email. And they will get back to you the same day, you know, but if you get anything I just ask.
 

In the adult clinic you are in control and it is a quicker and more relaxed service than in the...

The hospital that I go to now, and the adult based clinic is in my opinion far better than the children's services. When you are at the children's you know, you haven't got any control, because your parents are there and obviously that is not your fault you are just not old enough, but you have to be - any decisions often get taken out of your hands.  But now I am in full control, you know and it is totally up to me. But I like the adult base it is more informal and you can talk better to the doctor. The clinic where I go to isn't busy as such. So you know you feel more relaxed whereas at the children's, I mean, you can turn up, you now - at 10 o'clock in the morning and you won't leave until 3 o'clock in the afternoon and it is absolutely packed and when you go in to see the doctor you will have that many people in there, you think, I will be sitting here'. You will have your parents there and you could have about five doctors there and it looks quite scary from that respect. So nowadays, at the adult based centres I can't really fault the service I get now. And if I have got any problems I can just phone them up and I can go you know the next day even, you know, so I can't fault that in any respect. What I would fault now is in the adult based clinics there is only doctors. I see nurses but there is no physio or occupational therapy whereas you get all that at the children's hospital and like the surgery you get a wide range, but I suppose as an adult you are supposed to take more of a control of your illness, so you don't need that as much, but I think I would like, because I am only young still you know. The fact that when I go to the hospital I don't see that many people my age at the hospital when I go now, you know, obviously I am only 23, I wouldn't mind meeting people that are more my age but when I go, I am not being rude here, but there are a lot of people that are older and so their experiences of the same illness as me, arthritis, they haven't got a clue. So I would like to see, you know, more more people my age in the clinics. I mean I don't hardly know anybody with arthritis that is now an older person in their sixties, seventies. 

And in the children's clinic?

In the children's clinic, I mean, I used to know a lot of people. I mean from the age of sort of 11 to 16 you could go to clinic and you would see people that you know. So even though you wouldn't maybe talk to them at least there was someone there who is in the same position as you. And when I was younger I used to go to hydrotherapy every Wednesday, that was at a different hospital, but again you met people, there was people there your age, only about six or seven a week, but now you don't get to hydrotherapy.

In which way is it important or was it important for you to see younger people around you?

I think back then it was quite important, you know, because as I was growing up, you know, I mean, I went to school where there was disabled people, but it was a mainstream school, but there wasn't anybody, you know, with the same condition as me. So the only time I got to see people was at the hospital. So that was okay. I mean nowadays I wouldn't mind seeing a few more people but there again I have got other friends, you know. So the friends I have got now are perfect and you know I have met from university, so in a way I don't need that contact with the arthritis but I am just saying, you know, just occasionally it would be nice. But I don't. I haven't seen anybody for ages.

His gradual transfer built up his confidence. Suggests what needs to be done to make sure that...

What do you think it needs to be improved?

Okay. Well in my experiences, you know my transition is actually quite good I think. It was one of the best from what I have heard. Basically when you are transferred it is not a case of just going from the children's clinic bye and never see you again you are thrown into the adult based clinics. You see at the adult based clinics you are by yourself, you don't have your parents in the adult based clinics. So you have your parents in the child clinics and they are in control. So what I would say is what I had when I was about 14 I was allowed to see  the doctor by myself first and then my parents came in afterwards and so that allowed me at least to build up a bit of confidence and to ask my own questions. To take a bit of control. I mean I didn't have full control. My parents still were there, but  you know I could at least get an idea of what it would be like. I mean you can't possibly go from a child based clinic where your parents are just to be thrown into the adult based clinic and expect to be able to know what to do. You know regarding asking questions, regarding managing medication, regarding appointments. You know you need to be able to plan, you know to get it right in your mind what it is going to be like. So I would say no it starts right from when you are 11, 12, you know not just when you are 14, 15, because some people leave when they are 16 the adult based' you know for different illnesses it is different. Like for arthritis I didn't leave until 18 which was quite late that was. But for a lot of illnesses you get moved on when you are 16. So you have to be ready for that. So I would say start when you are 11, 12, 13, 14 you know. 

At least if you have started earlier so you can plan, move on and it is not just about the you know your condition, but it is also about everything a teenager needs to know about school, about sex, relationships, anything like that, you know it is about growing up. I mean the teenage years are probably the hardest of your life so it is not just about the illness but I would say the team need to know about everything as just opposed to just about the illness and you need help with that. So it is not just about the illness you need everything and that needs to be transferred to when you are a young adult as well. Like me, I mean, you know, I still need advice on many other aspects of life. So it is not just a case of purely about the illness. 

On which aspects for example?

Well if you are at school and you need advice about school, about friends, about relationships, you know, you know, growing up, you know, I mean in your teenage years you are growing up aren't. So you are turning into an adult, so you need that support as well.

Did you have much of that support?

I think I did. I mean I have always had the back up at school from the hospital. If I have ever needed anything, then they have always been there to provide it for me and you know, the hospital, they got involved with the school. It is the same with any other person, anything you need you can get and the hospital have always backed me up in that respect  you know, but I guess you know I am quite a private person. I have never really asked for the emotional support as such. I would say as well as your illness there is the emotional side of that illness, which is just as important. I say it is being able to cope with it is just as important as managing your illness.

Talks about what he needed to do to get a specially fitted car and what it means to him to have...

I applied on my 16th birthday because when you are disabled you can drive earlier. But you have to fill in these forms. Because it is Motability is the company, and this scheme, you know, and can basically you apply to them and they give you funding or they supply funding. You know there is all various different aspects to it. You know whichever one suits you they put you in you know there is all different like categories. So obviously depending if you are in a wheelchair or what have you, you need different things. Obviously everyone is different. So basically just apply. You know the forms you have to fill in. You can phone up for a form. You know go on the website or phone up for a form. And then the forms you know are about that thick. And I am not joking. You know extremely thick. But you send them off. Then you just have to wait. You know you can wait a long time and then it either gets approved or rejected. To apply though you have to be in receipt of the higher rate' you now the Disability Living Allowance, you have to get the higher rate for that otherwise you can't get the car on the scheme. But you know there is lots of people that are. But I got mine upgraded to that. So anyone that wants to apply they have to get the higher rate of the Disability Living Allowance. And you just have to wait a long time and eventually you get a reply saying you have been approved. So then you have to' you then have to go along and you talk about what you do and you have to go for an assessment. And you can go to your local hospital and whatever. Basically you go through quite a strenuous assessment of your strength and what you can and can't do when you are there and it takes ages and that gets done and that gets sent off and you then get a better idea then of what you are going to need to be able to drive and if it is possible for you to drive. I mean some people may not be able to drive because they can't use their arms or something so, you know, but even in that situation you will be amazed at what things they can do. I mean some people drive with their head you know, some people just knocks their head. It is amazing. 

Typically because you are severely disabled it doesn't mean you can't drive. But I would say at least apply. You know. Anyway you just wait and wait and wait and have to go through these assessments and you go to meetings, you know you have to go to' there is local places you can go to anyway eventually they come up with a few cars which are possible for you. Anyway you get assessed for the adaptations you need and quote and in the quote you think blimey, I mean that car is '40,000 the car is '12,000 and the '28,000 is adaptions. I mean you haven't got to pay that yourself, you know money, I didn't have to pay that but you get, it all gets assessed and obviously they meet the cost, you know, you do have to have some kind of agreement. Like you might not be able to have that because it costs too much. So you might have to settle for something less. Basically it varies from person to person. Anyway basically the costs get approved, but as time goes on the costs just get more and more because as you go, you have to go down to the' you get assigned to one of the twelve centres, because these adaptation companies where the car goes to, and there is only twelve of these in the whole country. I had to go to one in Wales, every you know to go into the car and to sit in the car and see what, you know, would need adapting and changing etc. So I mean that was over a period of about three years. And up to then the car was just sitting in this garage for three years while they worked on it and while the funding was approved and you know such a long process but in the end it is well worth it.

You got it?

Yes. I got it.

And

Early on he decided that as a young disabled person he would need all the qualifications he could...

This surely must have affected your schooling, I mean being six weeks in plaster and four months 'How did you manage?

Well  to be fair I missed a lot of time off school and if you added it all up it probably would come to years that I have missed, you know, I have missed an awful lot of time. I mean when I was off I did have home teaching, but it is not the same as actually getting into school. You know I fell way behind but I thought I had caught up basically. I have always managed to keep up. I mean I left school when I was 16 I got six GCSE's. I got six C's so I went to college and did three A-levels so I have still got the qualifications and I have always managed to catch up and sort of maintain that. I mean it is obviously hard, you know, extremely hard, but you know you just have to get on with it I guess, [chuckles] you know, you got no choice you know.

Okay. So what are your main motivations?

I mean I realise that because I am disabled, it is like anyone who is disabled and need to get a job, it is going to be a little bit hard. So in a way I am going to need all the qualifications I can get my hand on. And that is why I did my A-levels. I went and done my degree  so I have got all that. So now there is no reason why, because I have got all that, because I did catch up, because I did work hard, you know, I am able, you know, I have got as much chance of getting a job as anybody else. There is no reason why I can't get a job. You know I am not thick, you know I can - obviously there is issues out there regarding disability and jobs and it is hard for people with disabilities to get jobs. But I think if you have got the qualifications, you know, then that' you have got so much weight, you know, there is no reason why anybody can't give you a job. You know, I suppose it is your attitude as well, you have got to have a positive attitude. I mean I know people, that you know, they would just rather give up. You know what is all that about. I don't approve of'

You don't want to give up?

No. what is the point in giving up. I mean I have had a lot of ups and downs, I mean, I could have gave up years ago. But  I mean seeing how you only get one life don't you, so you might as well enjoy it.

Explains the assessment process for Disabled Student Allowance and the help he got that enabled...

If you go to university this is what I did, then you get assessed first of all. And I mean this isn't when you start university but a few months before, you know, I mean you can get this through your college probably or you can go on the website or something. Basically you get assessed for any extra support you might need at university and basically there is different types of funding, but it is all basically disabled students allowance, but within, yes within that, there is three different types of funding for different things you might need and this is all through you know, if you get to university you get a student loan or there is a section on there that you can tick for Disabled Students Allowance (DSA). So obviously if you tick that box they will send you the stuff. And you can apply for it and you will get assigned like to your local assessment centre again or to your Local Education Authority, which in my case was [city]. Anyway you get assessed and from my experiences I got. This is all assessed and I got before I started university and to complete my course you get a - I got a laptop computer. So if it was off I could still continue with my work you know. So I got that and it was obviously great, I got all the software needed to do my course. Any specialist software. I specialised in radio so you need software to edit. So I got that as well on the laptop. So when I was in hospital or I would off and couldn't go to university, I could at least do it at home. Also I couldn't drive back then, so I got a grant to get the taxi to and from university. So I got that all paid for. You get so much in instalments every term. But basically, you know, if you can't drive and you can't get there, you can get your transport funded. So obviously you are going to be able to get there. So it is obviously fantastic. And then once I was there I had - you can have people to help you in the lectures, like to write notes and to help you in the library, to help you with meals. You can have like a support worker. And that all gets funded through the same thing. So those are the three different areas. So you have got transport, you have got equipment costs and you have got like a support worker. So there is three different areas of the disabled students allowance or the DSA and I got all three of those. You get a certain amount each year, but if your money runs out then you can't have any more obviously. It is not like a bottomless pit. But  you know the money is there and you get assessed for what you need. Like the support worker was with me for 30 hours a week. So obviously if I exceeded that, you can't exceed that. So I had the 30 hours from that a week and I had the laptop to which is at home and I had the transport provided five days a week  throughout the course. Which was you know from here to university. It worked out '17 per journey. That is '34 a day. So that was all paid for. Which obviously is a big cost. And that was obviously great.

So basically the help is there, you just have to be assessed and everyone will get different, like if you have got a physical condition you can get dyslexic if you, you know, you will get some sort of help. Like I got extra time in exams, you know, to write or you can have a writer for you in the exam. That was all through the DSA and if you ever need anything different you just got to the university, to the disability section, and they have like a disability advisor, disability student advisor, you could got to him and he would sort anything out you needed or if you needed any extra hours if you needed anything extra then he would sort that out for you, for me. 

As a teenager he lacked self confidence but university and the experience of being seriously ill...

Can you tell me about more about how you were as a teenager? Was this positive you, there all the time, or has it gradually developed?

Well I think when I was a teenager obviously I missed a lot of time off school and so you have to be a strong person to get over that, to keep going on and to do the work. To get my GCSEs, to get my A-levels but I wasn't really confident. Do you know what I mean. I mean I wouldn't go out much with my friends during that period. I mean I was quite shy I guess. But I went to university. I did my first year at university and then at the end I finished there and like the May, June and I went to America during the summer. So I had actually done my first year at university. I went to America and then I was going to go into my second year but obviously I couldn't because I was in hospital. So I missed that year out but I would say the turning point, you know, was I don't know if is like a wake up call, but it is a changing experience. It makes you stronger and you think blimey that was close and you are more positive. I think then, you know, I mean my last two year's at university, I was you know so confident. Just a changed person, you know what I mean. I wouldn't be able to do this before, you know, university. I would have said I am not talking to a camera. I don't want to do it. But now I will do anything. Do you know what I mean. I am not scared about looking for a job now. You know, personally if you had said to me, you go to university and get a good qualification I would have laughed. But I think university as well has changed that. I mean it allows you to be more confident, more outgoing, you can meet loads of people and it just brings you out I guess.

I'm interested to know how did you sort of react at university? Compared to when you were a teenager at school?

When I was a teenager I mean I had friends but I wouldn't go out so much, you know, so they was only my friends really in school or college. I didn't really see anybody outside of those. So I guess, you know, you can call them friends. You know, you can't call them friends really. You know that was probably down to me. I was quite shy and you know I wouldn't get involved with things when I was at university, the first year at university, I met some fantastic people which I still know today and because I had to miss the year I lost contact with those people you know. So they carried on at university while I was in hospital you know. So I lost contact with them a little bit. But people' I have met some new friends, because I went back. The friends - I mean I always say that actually the American experience, that year out, was a blessing in disguise because I met all my friends I have got now and you know, they are fantastic friends. But if I hadn't have had that year out I wouldn't have met them. So in a way even though that happened you know there are lots of positives that come out. But now my friends, you know, just treat me as anybody else, you know. They are fantastic in that respect. And you know, they are not just friends for now, but friends for life, do you know what I mean.
 

He has just left university and knows there are schemes aimed to help people in his position (he...

I understand I mean I have only been looking for work recently, but I understand that you can get help at work as well through the scheme called Access to Work. And if you can't drive you can get the money paid to get you to work and you can have a support worker at work and any modifications that are needed to the workplace can be done as well. Like if the table is too high you can get the money to get a new table or the company gets it, wherever you work for. I am not sure how it works but the money is there and you can get the help. So that obviously is great.

So I have applied for jobs but I didn't have the experience needed, so obviously I didn't meet the standard for the job. So that is fair enough. You know, I can't moan about that. If I am not good enough for the job then you know, but there are rules now if you are good enough to do the job then you have to be given an interview. That is what I understand anyway. You know it is the law apparently now, and you know it is kind of the way it has gone up, I mean I am informed anyway that there are boxes that you can tick to say that you want, that you are disabled and that you can have a guaranteed interview, you know, provided you meet the standard for the job. Obviously if you are not good enough for the job then you can't '. Yes there are - these rules are only recent but '

And what about if you want to gain work experience and work as a volunteer? Would the same rules apply?

I don't think so. I think work experience is different. I mean it is a lot easier to get work experience. You know obviously you have to - if you are in a wheel chair or you know, to find somewhere that is accessible is quite hard. I went to the BBC which is great, like accessible everywhere but you know there are places out that people do find it difficult to access because of the disability or whatever, but again you can get help. You can have a support worker at the work experience to help you. But to volunteer, I mean I have done voluntary work at the hospital and that but that is only because I have known them. You know but I think it is easier to get voluntary work then work experience as to a paid job as such.

And you want that, you want a paid job?

Yes. I want a paid job. As soon as possible. Yes. I would say you have got to be patient but I am quite hopeful that because I have got my qualifications I will get something.
 

David enjoys his independence. He asks his parents for advice but makes his own decisions.

Over the years my family have always been there and I have got two sisters now, of course you know, there is nothing wrong with them. They are perfectly normal. So I don't know why, you know, I have got arthritis. It is just one of them things and there is nobody knows what causes arthritis. So it is just one of them mysteries. You know, it could be a bite by something. It could be I had some kind of illness  but I don't know and my sisters are perfectly normal. My family have always been there for me. You know, I mean, I have had some really bad times over the years, you know. In the hospitals, operations,  throughout my life I have had, I think it is 27 operations in 23 years. I am quite proud of that [laughs] and anyway you know they have always been there. But as time has gone on, and I have got older, I have took you know more of a control and nowadays, you know, I mean I go to the hospital myself now, to the adult base centres obviously, but I am in charge myself now obviously. When I am in hospital they have to be there for me. But nowadays I take all my medication, all of my appointments I go by myself, but obviously when you are younger you can't do all that by yourself so you rely heavily on your family and I can't fault them in that respect. 

What do you think what the main factors that influenced that? I mean apart from your attitude to it.

Well it was always a plan in my mind to get my grades, to go to college, to go to university. That was always the plan right from when I was a teenager you know to get as many qualifications as possible to allow me to get a better chance of getting a job. But you know my family as well I mean considerably they pushed me, not pushed me as such but it was for my own benefit. Do you know what I mean. And obviously I have got my qualities myself but I have got those from my parents. If they wasn't there to push me along then I probably wouldn't have, you know what I mean, I can't say what I would or wouldn't have done but it would have been harder to develop myself, but I have always had the support of my family.

Are they protective or not?

No. I wouldn't say over protective. I mean because I am older now, I take more of a control in my arthritis and the medication etc. I mean they don't know what is happening so occasionally they ask or they want to know and you know if something isn't quite right then they might say. But at the end of the day it is my decision now. Now since I was 18 it is my decision. So in that respect. I mean I can ask them for advice, but ultimately it is my decision. It is my disease, it is my body. You know I am not a child any more. So nowadays you know, I have to take control and I like taking control. But I wouldn't say overprotective. I mean I am close to my family because of that time I spent in hospital etc. and you know it does make you closer. When you spend so many hours in hospital, so many days, weeks, months, you know you are with someone so much, so you are going to be close to them aren't to them. So I am closer to my family then probably your average 23 year old. You know but that is fine. Nothing wrong with that, you know. But nowadays I do have a lot more independence because I am older, I mean, when I was a teenager as well we didn't have just a house, things round the house, we didn't have like now, up until a few years ago I couldn't even open the front door but now we have got that in place so I can you know, open the garage now at the push of a button. So things like that, you know, I have got lots more control now then I had when I was a teenager. The house I am living now it is more or less built for me, you know, I have got a walk in shower. I can do that myself. When I was younger I had to have a lot of help. You know