Simon B

Age at interview: 42

Brief Outline: Simon sustained his spinal injury when he was 25. He was travelling in Australia when he broke his neck after diving into the shallow end of a swimming pool. He is now a C6 tetraplegic.

Background: Simon is single and lives alone. He works as a community peer support/outreach officer with the Spinal Injuries Association, supporting Londoners with spinal injuries. Ethnic background' White British.

More about me...

Simon was working in retail banking in 1994 when he took some time off to travel round the world with his then girlfriend and work out what he wanted to do with his life. He said' “I did change my life, but not really how I expected to”. He is now a C6 tetraplegic, (this refers to the top part of his spine in his neck that was broken).

 

Whilst in Australia, Simon dived into the shallow end of a swimming pool, broke his neck and started to drown. He was taken to hospital in a specialist spinal ambulance and went straight to spinal intensive care where his injury was treated using a technique called conservative management, which meant he did not have surgery. He was flown back to the UK and spent a further nine months in hospital. He describes how the time spent confined to bed in hospital allowed him to think about being injured and helped the psychological process of getting used to being injured. 

 

Simon says that everyone’s spinal injury is different. His affects his skin, bladder and bowels, so he has to manage and take care of these to prevent problems arising. He manages his bowel issues by controlling his diet and takes care to check for pressure sores on his skin. He had a permanent catheter installed to manage his bladder. He initially tried an intermittent catheter, but his limited hand function made this difficult, so he decided to have an indwelling (permanent) one inserted. According to Simon, “aesthetically it’s grim, but it works”. 

 

Initially, after his injury, Simon felt he lost all control and became a patient; “You lose your dignity, your sense of identity and to reclaim that psychologically is quite hard. You have to reclaim who you are.”

 

Simon wants other people not to give up after spinal cord injury and says, “Just allow for things to take time”. He says there are a lot of things he can do in spite of being paralysed. Since his injury, he works, has had relationships and does lots of things he enjoys. He likes to ski using a dual ski and says that skiing is something he can do with able-bodied people and “disability is irrelevant”. 

 

Meeting other people with spinal injury was encouraging for Simon B. They gave a personal insight into post-injury life that his able-bodied therapists could not.

Yes, it’s tough rehab, really tough. And it doesn’t stop when you leave hospital, it starts, so you’d better pay attention while you’re there.

 

I suppose you know, you sort of, you don’t get a chance to practise it in hospital?

 

No.

 

Well at least not in your real life situation?

 

No, not at all and also the therapists are able-bodied. They know the theory, they know the clinical side of it, but they’re not actually doing it themselves and that’s where the expert patients do come in, because they are the ones that say, “I had to learn. I had to struggle. I fell on the floor. I got it wrong. But eventually I got there, and these are all the pitfalls, these are all the problems and these are all the tricks and short cuts to speed that process up. So rather than doing like I did, you know, taking years to get independent, if you can shorten that process down, then you can move on with your life and get back to doing all the things you want to do, which is, you know, work and going out and whatever it is that you…” You know, for me it’s travelling, and cooking and going to the pub. You know, going to gigs. For other people it might be something really different. But getting back to the important stuff and not being bogged down in never-ending rehab.

 

Since his injury 17 years ago, Simon has had five wheelchairs. He explains how they are funded and what is important in a wheelchair.

The basics' my first wheelchair fell apart. You don’t want to spend any decent money on your first wheelchair because it will never be right. My replacement costs for this is £4,000, which is a lot of sort of money every five years. I get a wheelchair voucher, which for my area is £1600 contribution, complete post code lottery because some people get £500, some people get £3,000. I don’t think there’s any kind of clinical reasons to what you get. It seems to be purely budgetary. I will utilise Access To Work for it to bridge the gap between the money that I’m being offered for my voucher, and the money it costs.

 

I have a British made wheelchair. I probably shouldn’t say who it is, but...I have all the extras, titanium, carbon fibre, custom fit frogs’ legs, stability wheels, and it is a lot of money. But it is the difference between a high quality of life and a compromised quality of life, and again, unfortunately, its money. You know, a £1,000 wheelchair is not as good as a £4000 wheelchair. As is a £1000 car is not as good as a £4000 car. It’s just pure, pure experience of knowing what I want, knowing, I mean I’m six foot five, 36 leg inside measurements. I’m tall in the leg and tall in the torso. The chair has to be fitted for me. It is fitted for me. My chair spec hasn’t changed in over ten years. It’s the same spec as to how it’s configured in all that time. So it works. Yeah, and it’s a good chair. It doesn’t break. It doesn’t go wrong. There’s no, apart from the obvious moving parts on it, there are very minimal moving parts now – it sounds a bit of an oxymoron, but... The bits that move that need to move, move, and everything else is fixed solid and bolted and clamped down so that things don’t wear out or break on it. So, yeah, this chair is old and it’s done well for five years.

 

Okay and how did you figure out what you needed from it?

 

Just being in it, just being in it.

 

Yes.

 

When you sit in a bad chair you know what’s wrong about it, so you change the next chair to be a bit better and then by the time you get to about your third chair you’ve got it sussed properly.

 

And is it the sort of thing that you can go back to your supplier and say, “Actually I want this changed or that changed.”?

 

Not always because it depends on how the chair is built. If it has lots of movable parts then you can configure it off that chair. If the chair is built bespoke then it’s fixed and you can’t change it. So your best chair is to have a chair that is flexible so you can move the camber settings, you can move the seating, posture settings, you can move angles. So, my first chair was like that, but as soon as you have lots of movable things they break, they wear out. So my chair literally fell apart after eighteen months, like a Keystone Cops car that just fall apart, it literally fell apart and I moved on… I’ve now my fourth or fifth chair? Fifth chair in 17 years. So that’s quite a lot. That’s more than one every three years. And given that most voucher schemes are between three and five years, so it depends on what chair you choose and how long it lasts. Some of the frames are meant to last a lifetime but that’s just warrantee rubbish. But this one’s lasted five years, so it’s done okay.

 

Okay.

 

It’s been in the sea and snow and sand. And it’s done it’s bit. It’s done it’s time, so… 

The Disabled Facilities Grant finances modifications to people's homes. It can be a long process to get sorted.

So if you were to make modifications you would have to pay for them yourself?

 

I personally would because I have my own money; I work and so on. You can get access to Disabled Facilities Grant, which is a means tested. Roughly, they may have changed the recent guidelines, but about £30,000 and you can get roughly on a grant. As I said its means tested, so obviously your needs have to dictate. But yeah, they’ll put in things like wet rooms and you know basic kitchen access and access to and from the building. So it’s a good grant scheme and it’s there to help people out that don’t have the money necessarily to pay for it. And it means you don’t have to move, because if you acquire a disability and you’ve had a family home for ten, twenty, thirty years, you don’t want to move, it’s a great way of staying where you are, rather than having to uproot, move out and start all over again. 

 

Retrospective renovation often is dearer than say building from scratch so it does involve a lot of money. And the DFG [Disabled Facilities Grant] is a good way of staying where you are, but I believe it can be a fairly slow process to make happen. So it’s often something you have to get on to fairly quickly to start doing, when you’re already just dealing with disability itself, may be you’re in hospital. So it’s quite a lot to think about at first. But yes, again it’s all money. Being disabled’s expensive. And any money you can get that minimises it will make your life a lot easier. So there are stuff in place. And if you can’t get help from the State then go to the charities, use the charities that are involved in the spinal world and utilise those. They’re there to help to. Different charities do different things. And if you don’t have the means then you’d go and find where is available to make life easier. It’s all about knocking the edges off when you’ve got a disability, just making things a bit easier. You can’t change your circumstance, but you can adjust and work around it.

 

Simon rents a flat that isn't what he regards as an accessible property, but prefers to make his home subtly accessible.

I currently live in a flat in London that isn’t what I would class as accessible flat. It’s a private rented flat. I’ve made it as accessible as I can. Use all the bottom cupboards in the kitchen. I’ve got six bath boards over my bath, which turns it into an accessible shower. Because it’s not an accessible wet room or anything like. So I just had to improvise there. Standard pressure relieving mattress on me bed, so I’ve got a Tempura mattress on my bed. Kitchen, the cupboards underneath aren’t ripped out underneath like they would be or should be, but again it’s a rented flat so I can’t do that. Ramp out to balcony, fourth floor so there’s a lift. Always have a mobile phone attached to me in case something goes wrong. Car park’s covered. Safe, dry, secure. So, but they’re all things that I can cope with now, being seventeen years injured rather than one year post-injury and having a greater need for things to be accessible. So I’ve learnt to improvise through lots of travelling, and being caught out and knowing what I can get away with, and what I can’t get away with. So my flat isn’t what I would call accessible, but I’ve made it accessible. So I do okay. I’m all right in that respect. But better to have an accessible kitchen, accessible bathroom; makes your life a lot easier. You know, removing all, you know, making everything step free. Step free access so that you can get around in a chair wherever. If you can have an adapted place it’s far easier, but everyone’s housing needs are different, but you know, I live in London so it has unique impact on housing. I don’t want to mention how much my rent is. It’s quite scary. But I live in Greenwich and I live in a really nice area so I’m quite lucky. But I work, so you get what you earn and spend it quite quickly. So I’m, I’m lucky, but the more you can make your house adapted that’s not to say that you turn your house into a hospital so that everything looks white and clinical and you know, looks kind of accessible.

 

You can make yourself quite accessible, you know, subtly, you know, so that someone wouldn’t even know that your house is adapted. That’s not to say that I’m ashamed of being disabled; it’s just that I want the aesthetic to look subtle and nice. So at the moment my flat is absolutely fine. But I’ll be in it another year or two and then I’ll probably decide to buy.

 

Right and when you buy you make your home accessible in whatever way you choose?

 

Yes. When I put roots down, it will be money I spend that I won’t want to have move for five or ten years after it, because the cost of adaptations can be expensive. You don’t want to spend all that money and then move two years later, because it’s like money that you won’t necessarily get back in the market value of property

 

Rather than getting them just to do things for him, Simon used his carers as a 'resource' to help him become independent.

Did you have a personal carer, or an assistant at the time?

 

I did at first, yeah. When I first I first got out, I had 12 hour day support and then 12 hour overnight support that was shared with others in the area. Because I kind of knew that independence was achievable, I used them as a resource rather than people that I was going to live with permanently. So I employed young students, working their way through university, who wanted a job for a year. Told them that I was never going to need them always and that they were there to help me get independent not there to do stuff for me. So they were a resource...And I got on great with them. I was 25, they were 20, 18 whatever. So we were fairly, both fairly young. And the relationship worked quite well. But they were not something that I was going to use always. So they were there to pick me up when I fell rather than just doing stuff for me. And I suppose I got rid of them about… probably around the three year’s post injury mark, which I’m glad I did, because I don’t have to rely upon anybody now. 

 

And it is a model that worked out fairly well. It was kind of safety first. I fell on the floor a lot, when I was first learning to get in the car and transfer and they would pick me up. You know, help me cook dinner, do the cleaning, all that kind of stuff and eventually over time, I got all that back. So, and I only now have a cleaner now once a week, so I’m quite, but then again everyone has a cleaner if they’re working a lot, so it’s fairly normal. I can kind of write that one off. I’m quite a stubborn character and I want to do everything myself.

 

So, yeah they were there, they were, they were a good kind of, they were a good transitional phase to go through, rather than discharging home with no care. I have no idea what would have happened then. But I was far less able, far less able those days than I am now. Far less organised. Now I’m quite disciplined about what I need to do and what not to do. So I’m a very different person to seventeen years ago. Both in terms of just generally getting older and also about how I approach life and how I approach my disability. And then working in this kind of field, my life’s become my job and vice versa. 

 

Simon B thinks emotionally adjusting to injury takes a long time, so a prolonged period of recovery can be beneficial in this way.

Yeah, I mean from what I’ve experienced in the 17 years since my injury is such that I think, the disability is one thing, but it’s all about psychology and I think if you’re surgically fixed and then a week or two later there’s a wheelchair by your bed. I think that’s quite a leap psychologically to go from being very active to being suddenly having a chair thrust upon you. I think after two months you’re kind of grateful there is a chair, because you just want to get out of bed, and so for me, it seemed to be, it seemed to work. It seemed to help that psychological process. 

 

And also the fact that that factored into a very slow rehab in terms of 51 weeks these days that would be 30 weeks, if that. So I think it gave me enough time to provide the building blocks to the rest of my life by having a lot of education, lots of time to think, talk, share time with other people that were going through it as well. So I think that slow approach has seen me to the extent this day. I think if I tried to rehab in three months I would be then being chucked out into the community. That might be a very different thing entirely as to how well I might have done.

 

Simon B has been offered help with his shopping, which he found a little patronising.

There are many idiots who will park in the Blue Badge spot as there are other people who will help you get out of the chair, get out of the car into the chair. So for as many idiots as I shout out for parking in disabled… yeah, I’ll sometimes, I’m offered by two or three people in a row when I’m getting out the car. I don’t know if it’s just me. But people can be very generous and as equally as being very generous you can have utter morons. So I suppose that’s just human nature, isn’t it really? So, there’s no accounting for human nature really when it comes down to it. There are ignorant people. There are people that will stare, but on the other side of that, there people that will offer help. 

 

I don’t know whether it’s me, I just seem to take the good with the bad. I try not to pay too much attention to it. I think you can get very absorbed by the negativity of it if you pay too much attention or are too aware of some of the problems. I tend to be, it’s more of an impact on me when people offer me help that I don’t really need. I think sometimes they’re patronising you and they don’t mean it, but I think it’s nice that people offer help when they see an idiot like me, kind of rushing across Sainsbury’s with a big basket of food on his lap. Clearly I can cope because I do it all the time. People don’t necessarily know that, so I get offers of help quite a lot. But, no you just have to be quite tough to that experience of negativity.

 

I’ve not experienced any kind of direct hostility from anybody. I’m sure people have, but I can’t ever say I’ve experienced any kind of hate crime, which I haven’t, but I’m sure people have. I just haven’t personally experienced it. 

 

He lost a lot of confidence after his injury and part of his rehabilitation was to get it back and go out.

Yeah, that’s, as I might have mentioned earlier, I come from [home town name] which is a big kind of going out club nightlife, which I got back into reasonably quickly. I think I suffered massively from body image and confidence when I was probably in that year, two years post injury bit. But after that bit, no I was going out just as much as I ever was, probably partying far too hard than I should have done. But I’d kind of come through that lack of confidence and body image and all that and suffered so much with it that I kind of felt that I owed it to myself to get out and go out. And after that I had a massive group of friends locally. I went out a lot and didn’t really care, and that was almost part of my rehab, was rebuilding my confidence and getting out.  

Losing friends is a painful process, but Simon B says it’s “a process that needs to happen”.

So, my social life was pretty good after it taking a massive hit, both in losing some friends, because you do, but they’re friends you need to lose really because the good ones stick around and the bad ones leave. So that’s, that’s a process that needs to happen as far as I can work out. And just finding out whether you want to do the things you did before your injury, whether they mean the same things to you. You know, I spent, you know, the first ten years after my injury going out a hell of a lot. I was 25 when I had my accident and I think I partied quite hard until I was about 32, 33. And then I moved on to a different stage in my life and that was nothing to do with my disability; that was to do with just wanting different things. I think sport and culture crept into my life when I got a bit older. So you got the confidence to leave the front door, that’s where you need to be, getting the confidence back is the hard bit. So, but to have the confidence you need to do it, and to do it, you need confidence. So it’s a vicious circle. 

Simon B said it is important to be organised. He keeps a couple of rucksacks packed with the things he needs to stay overnight by the door and in his car so he won't be stuck.

Less so. I wouldn’t say I don’t think about it at all and I would say that I think about it all the time. I’m somewhere in the middle in that I now always have my home environment in such a way that I have, you know, a rucksack by the front door, full of my stuff. I have an overnight bag permanently in the boot of my car. I have all my kitchen laid out a certain way. So, kind of on a functional, you know, organisational level, stuff is just in its place. And then also personally I’m organised in a certain way. So, you know, regular bowels and drink certain amounts and eat certain foods and, so you kind of chip away all those things, and you do them also on auto pilot. So, less so. I think I found a reasonable balance in the circumstance that I can live fairly spontaneously, because one thing you do lose with disability is you lose that spontaneity of just going right I’ll just nip out now, rather than having to think ah I’ve got to do that, I’ve got to do that and I’ve got to do that. If you’re more organised up front you have to think about that less. 

 

So for instance, in my rucksack that I carry with me every day, there’s enough stuff in that rucksack that if a mate says, “Oh crash over tonight. Kip on the sofa.” I can do it. Because I know that everything I need is in there. I don’t have to think about it or say, “Oh no, I can’t do that because I’ve not go this bit or that bit.” So, there’ll always be a toothbrush and a spare leg bag and just stuff in there so I don’t have to think about being disabled. I can say, “Yeah, of course I’ll crash over.” Or I have an overnight bag probably in the boot of the car in case I come home one night and the lift’s broken, so I can go and stay in a hotel down the road, or ring a mate and crash on his sofa. So you do get disciplined. Unfortunately, you do all that stuff by making all the mistakes. They all come at the expense of things going spectacularly wrong. So you only get that through experience. It’s not that I’m particularly wise before the event, it’s just that I’ve learnt after it. So it’s a struggle to get the spontaneity back. But if you do you can be much more content if you do. 

 

But yes, an able-bodied person’s body does run on autopilot. It’s just so easy being able-bodied, compared to disabled. Because I’ve been both and that puts me in unique position that I have been both, so I know what both means. And it’s far easier. But that’s not to say that with a disability you can’t adjust and get organised. But you do have to be very disciplined and that’s something that does take time.

 

Simon B thinks it's important to find a way back into the world of work, but it's important to think of your health.

So I’ve always found working self-employed or flexible hours for me, personally the best way to work, because I don’t mind working long hours, as long as I can work them flexibly. So, not easy and for me it was little stages, you know, one day a week, two days a week, three days a week and just building up to it. Maybe that’s just me I don’t know. I mean for others it might be easier just to go back and work full-time and get on with it. I have friends that have worked full-time from very soon after their injury and still work full-time to this day. I think you have to be very mindful that you don’t put your body at risk of working too much. You do have to, you do have to compromise again because there’s no point working full-time if your body starts falling apart and you pick up pressure sores and don’t take care of yourself, so you do have to manage that Again it’s another thing to manage. It’s a never ending list of things to manage to be frank, but yeah, stages. 

 

Stage return. I would certain encourage people not to return full-time straight away, maybe part-time, or if they lose their job, start volunteering. Or start finding a way back into the working world. Because it brings, it brings a whole new life to you. If you’re not stuck, if you’re stuck indoors seven days a week because of disability and not leaving the house, you’re probably depressed because you’re stuck indoors as much as you’re depressed because you’re disabled. So to have something to get your teeth back into is, is important, I think. So I found that although work can be quite demanding and quite hard, I think it’s, in many ways, something that I’m really glad I’m engaged in. Because everyone needs something to get out of bed for. And for me, I like my job, so I don’t mind getting out of bed for it.

 

Simon B joked that disabled toilets are 'miracle factories' because people go in disabled and come out walking.

Okay. Tell me about disabled toilets?

 

Yeah, they tend to be massive, the size of a football stadium sometimes. And often used by people that don’t need them. Hit and miss, some are great, often not enough, sometimes in strange places. I have no real, no real whinge, about disabled toilets other than when people come out of them walking, which I often refer to as it being the miracle factory because they’ve gone in disabled and they’ve come out walking. So no, no real whinges, there, there tends to be enough of them. They have them on trains, on you know, Virgin Pendolinos, they’re right by where you sit, so they’re accessible. They’re better than they used to be. They don’t stink of wee like they used to in the old days. The Radar key scheme’s great. That works pretty well at keeping people out. It’s a special key from the Royal Association of Disability. I forget their title, but a Radar key, most disabled people have a Radar key about £2. They’re a special key, they open certain you know, toilets in pubs and whatever, and it tends to keep the masses out.

 

So the disabled toilets are permanently locked ….

 

Some are. Not all are. Some have a special Radar key and you’ll see that there are certain locks. And I’ve had a Radar key since, you know, I was first injured, pretty much. I found out about the Radar key and it allows you to access, you know, certain toilets.

 

Simon B hates using the trains because he feels like a “piece of luggage” being loaded on.

You know, on trains, why are trains three foot above the platform, therefore, you need a ramp? Why aren’t they lower to the platform and you don’t need a ramp? You know, I hate trains. I’m like a piece of luggage when I’m loaded onto a train. You know, why aren’t they just low? Or why aren’t the platforms higher? Or why is there not a button on the side of a train that the ramp comes out on its own? Why do you have to wait for some bloke to turn up with a ramp, who often doesn’t turn up? As I’ve found to my costs. I know other people swear by trains and say they’re fantastic and use them every day to go to work. I have had the worst experiences. You know, so that inconsistency doesn’t exactly instil confidence. You know, if one person finds them fine, they probably use them all the time and have no problem, but for me, you know, I’ve had, you know, stuck on trains going down the line, where I’m not meant to be and then trying to get back down the line. It’s just horror stories.  

Because he has a comfortable, expensive, custom-built wheelchair, Simon B doesn't like using airport wheelchairs.

Staff asking you at check in to get out of your chair at check in, and then suddenly be in some rubbish chair for the rest of the airport. Forget that. That’s not happening. Chairs being sent to the carousel with the rest of your luggage and going round on a carousel. My chair to replace is £4,000, so I don’t want to it going round on a carousel. And I’ve held up flights because they’ve sent my chair to the carousel, and they have a tag on the chair that says bring to cabin door, which means you need your chair at the cabin door, not on the carousel. So I blocked up a flight from Zurich five or six years ago, with BA, who at the time had a bad reputation, which recently it’s got a lot better. And I held up the flight for 45 minutes while they went and got it. It was my rare moment of militancy that I just threw all the toys out the pram and said no, go and get my chair. That’s why it cost £4000 and I need it, it’s fitted to me; it’s bespoke. It has a pressure cushion and it has all the toys and trinkets that you need out of a chair, and that’s what’s been paid for and that’s why I need it at the door. So you’d best go and get it. I don’t think I made a lot of friends that day. But I got the chair.

 

Okay. When they ask you to get out of your chair at check in and they, they want you to use one of their airport chairs. …

 

There’s only one answer to that, that’s no.

 

And why is that?

 

Because I’m not sitting on their chairs. What do I have my own chair for? The golden rule of flying is 45 minutes before the plane takes off to be at the gate. It gives them sufficient time to load you first in privacy, with sufficient time to allow everyone else to board and the plane get away on time. If you do it all like that it’s fine. If the guys turn up 45 minutes in advance, which they most of the time do, you’ll get on, you’ll be lifted and handled and moved and all your luggage carried on in privacy, first, always first on, last off. Fine. I’ve got no problem with that. It would be great if they could make it successful. In 15 years of flying post injury, I’ve only once stayed in my chair, onto the plane in my chair, transferred myself out of my chair into the seat and that was on an upgrade on a Virgin flight, and it was great, it was wonderful, I could stay in my chair. I could transfer out of my chair, like I do to the car these days, but that’s a lot of flights between then and now. And I fly three, four times a year, quite regularly.

 

So I know people that don’t fly that are chair users because they’re fed up with the experience. I tend to just want to do the things I want to do and have to bite the bullet in between and put that on the experience. Sometimes it’s absolutely fine, sometimes it’s horrific.

 

Does the staff have to transfer you into the seat on the plane?

 

The ground crew, the moving and handling crew, yes. Often they’ll send two small women, which is not a good idea for a six foot five bloke of fifteen stone. And that’s not sexism, that’s just pure practicalities. And often the crew on the flight will be just, if not more helpful at doing some of that then the people that are turning up to do it, and I’m sorry to say, it’s better overseas often, then it is here. 

Simon B says there are groups trying to make London more accessible, but they are financially constrained. He thinks disabled people would go out more if transport was more accessible.

And do you know if there is anything being done to change that? Does Transport for London know?

 

They’re they should know, but not much is done when people do complain. There are various organisations out there in London that are fighting to make transport more accessible. I don’t know how far they’ve got with that. I mean there’s no current timeline to make the whole tube network accessible. I think they just recently scaled back on making more tubes accessible. I think they’ve actually scaled that back by 30 or 40% on you know, previous plans to make certain tube stations accessible. You know, you have to understand that it’s an old network, so it’s not very easy to make tubes accessible, but it’s all about motivation and money and making these things happen. And they basically getting a big stick to hit people with to make it more accessible. 

 

People wonder why people don’t leave their houses that are chair users. 

 

They don’t leave their houses sometimes because it’s bloody hard to do so. So, the more easy you make it, and the more you make people part of society, and out there working, travelling, and spending money, and going to pubs, and just being a person that’s, who is trying to engage with everybody else. So you know, it is a problem. 

 

Simon B's relationship broke up a year after his injury. He said his girlfriend probably thought he was always going to be the way he was at that time.

 As many people split up as stay together in my circumstance. I was 25 years old and we split up about a year or so after my accident. Very young. Very screwed up at the time because of it. Kind of glad now that we did. But probably not at the time. Obviously at the time it was like oh my God. What the hell am I going to do? Never going to have a girlfriend. So yeah. Good relationships get stronger and better out of it, and relationships that clearly have fault lines before it will probably split up. And I don’t think there’s any one rule that says oh yes, you’ll stay together, and no you won’t. I think it’s very much based on your own individual relationship. And, at the age of 25, I suppose she probably didn’t see herself sticking by me, because she probably also thought that I was going to be as I was then always. And I clearly am not that person I was one, two years post injury. So, on reflection she probably made a good call because I was probably a bit of a mess one or two years post injury. 

 

In the long term she probably made a bad choice because I’ve gone on to sort myself out and be far more capable and independent and get my life back. I kind of know the answer to that, because, stuff I don’t want to talk about, but I know I have gone on to bigger and better things and I have had many girlfriends since, so … And also those girlfriends that have been with me post-injury only know me as I am now. So in some ways it’s easier for them, because they accept me up front for what I am. So yeah, so don’t rule out relationships. That’s for sure.

 

Simon B said having confidence and communication make relationships great, and wheelchairs irrelevant.

Is there anything else you want to talk about in terms of relationships?

 

It’s a really sensitive subject for a lot of people, and it all comes back to confidence. And you don’t have any confidence when you acquire a disability. It’s completely shattered and it’s disappeared and gone. But you can get it back but you need, you need to form a relationship with somebody that you can openly talk to and communicate with. If you can have kind of complete openness then I’ve got plenty of my mates that are in relationships. I’ve just come out of one after six years. But their relationships are just as strong, just as solid as an able-bodied person’s relationship. But you do need to be with someone that can talk. And talk through all the complexities that you have as a disabled person. 

 

And if you can do that then you’ll have a great relationship. Chair becomes in some ways irrelevant. But if you can’t talk about stuff your relationship is just doomed, it’s doomed from the outset, because you’ll conceal things that need to be discussed. And you can go on to a full life if you do. I know plenty of people in 20, 30 year relationships and chair users. So… I think it’s harder, I think it’s more complicated and you need a more understanding other half, but it can be done. I’ve seen it being done, so I know it’s possible. So yeah, just bear with it. Things aren’t always going to be as they are at this particular moment when you’re first injured. Things do get better. Things do adjust, and you get your confidence back.

 

Simon thinks that volunteering or going back to work is important because it gives you a reason to get out of bed.

Stage return. I would certain encourage people not to return full-time straight away, maybe part-time, or if they lose their job, start volunteering. Or start finding a way back into the working world. Because it brings, it brings a whole new life to you. If you’re not stuck, if you’re stuck indoors seven days a week because of disability and not leaving the house, you’re probably depressed because you’re stuck indoors as much as you’re depressed because you’re disabled. So to have something to get your teeth back into is, is important, I think. So I found that although work can be quite demanding and quite hard, I think it’s, in many ways, something that I’m really glad I’m engaged in. Because everyone needs something to get out of bed for. And for me, I like my job, so I don’t mind getting out of bed for it. 

There are organisations in London working to make transport more accessible for disabled people. Simon B thinks this will help disabled people feel part of society.

There are various organisations out there in London that are fighting to make transport more accessible. I don’t know how far they’ve got with that. I mean there’s no current timeline to make the whole tube network accessible. I think they just recently scaled back on making more tubes accessible. I think they’ve actually scaled that back by 30 or 40% on you know, previous plans to make certain tube stations accessible. You know, you have to understand that it’s an old network, so it’s not very easy to make tubes accessible, but it’s all about motivation and money and making these things happen. And they basically are getting a big stick to hit people with to make it more accessible. 

 

People wonder why people don’t leave their houses that are chair users. 

 

They don’t leave their houses sometimes because it’s bloody hard to do so. So, the more easy you make it, and the more you make people part of society, and out there working, travelling, and spending money, and going to pubs, and just being a person that’s, who is trying to engage with everybody else. So you know, it is a problem. You know, on trains, why are trains three foot above the platform, therefore, you need a ramp? Why aren’t they lower to the platform and you don’t need a ramp? You know, I hate trains. I’m like a piece of luggage when I’m loaded onto a train. You know, why aren’t they just low? Or why aren’t the platforms higher? Or why is there not a button on the side of a train that the ramp comes out on its own? Why do you have to wait for some bloke to turn up with a ramp, who often doesn’t turn up? As I’ve found to my costs. I know other people swear by trains and say they’re fantastic and use them every day to go to work. I have had the worst experiences. You know, so that inconsistency doesn’t exactly instil confidence. You know, if one person finds them fine, they probably use them all the time and have no problem, but for me, you know, I’ve had, you know, stuck on trains going down the line, where I’m not meant to be and then trying to get back down the line. It’s just horror stories. 

 

And so no, it’s not brilliant, tube stations, you know, Jubilee line’s not bad in London, but it’s still a problem if the tube’s packed. If the tube is jammed how do you get onto it and nobody will make room? They won’t make room for an able-bodied person, they won’t make room for me, so…. And then there’s a six inch gap that you have to leap over. Even if it’s flat so…. There’s now some websites that actually show you how accessible the tube stations are with video footage and so on, so you can use those to kind of plan your journey. But, it’s another thing you have to do. An able-bodied person doesn’t have to plan their journey to work, so why should I? Why should it be made so hard for me to plan my journey to work? And I’m quite a resourceful resilient person. There are others out that that are far less resourceful, resilient. They must really struggle. So yeah. Universal access in my life time would be a nice, would be a nice thought.