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It’s a source of anxiety for many disabled people that they will be forever overlooked in the love stakes, or that it might be too hard for some people to keep a relationship going with them.
On this week’s takeover show from Ouch, three non-disabled women, Mel, Jo and Candy discuss the life they have with their disabled partners.
Find out how Candy reacted when someone assumed she was either a carer or getting payment for being with her partner. What special circumstances led to Mel being particularly positive about dating a disabled man. And how Jo thinks communication is the absolute key. Plus much more in an in-depth edition of the podcast you won’t want to miss.
We’d like to hear about your relationship and how you make it work. Or perhaps you don’t have a partner and believe your impairment is at the heart of the situation.
Read the transcript
If you’re not familiar with Ouch, it has almost exclusively featured just disabled people for 12 years. Previous the podcast has been “taken over” by autistic presenters, people with chronic illness and people with mental health difficulties.
Coming soon is a takeover by disabled inspirational speakers and one with disabled school kids but this one features a perspective we have rarely ever had – that of non-disabled people who have partners that are disabled.
How I met my disabled partner
Presented by Mel, Jo and Candy
AUDIO says: “If you want me to release the beast” “The beast will be released” [said in turn by Mel then Candy in rhyme]
MUSIC then plays with the following words over the top: ‘This is another BBC Ouch takeover where we hand over the microphone to guest presenters to see what they do with it’
MEL- Hi everyone. This is another BBC Ouch takeover. I’m Mel.
JO – I’m Jo.
CANDY – And I’m Candy.
MEL – The three of us are not disabled but the thing that brings us all together on this podcast is that we all have disabled partners.
JO – So, if you’ve been listening to the Valentine’s show with Simon and Kate at the beginning of this month we’re here to tell our side of the story.
CANDY – As always in these takeover shows we have a tea caddy in front of us full of questions from the Ouch team. I’m told some of them are deliberately a bit stupid; although personally I don’t believe in stupid questions. We’ll be dipping our hands in and answering as many as we can manage in the next 20 minutes or so. Bit nervous.
MEL – Okay, it’s Mel and I’m going to take the first question. Are we ready, ladies?
CANDY – Think so.
JO – Yeah.
MEL – How did you meet your partner? Ahh lovely.
CANDY – Go for it Mel. Give us the romance.
MEL – Okay, the romance. I think there was maybe a bit of fate. I used to do paragliding and I had a paragliding accident, which was very similar to – I don’t know if you guys remember Wile E. Coyote and the Road Runner, Looney Tunes?
JO – Yes.
CANDY – So, you just kept on running!
MEL – Well no, not quite. I actually crashed into a billboard. Which I think Wile E. Coyote has done many times. I had a massive cut in my leg and couldn’t walk, couldn’t drive, couldn’t work, and I don’t know if you remember 2006 that really hot summer, and I was like what shall I do when everyone’s at work. I will go and talk to men online.
CANDY – As one does. Passes the time!
MEL – And I figured out I could walk as far as the pub at the end of the road, so I went on this really horrible first date with someone who will remain unknown. And then Steve had just recently joined this online site and I was the first person he contacted. I can’t remember what his name was, but you could tell from his name that he was a wheelchair user, so that was there straight away. And I think for me where I had my accident somebody else died the same day at the same spot.
CANDY – Goodness me.
MEL – And obviously I crashed into a billboard, and I thought my injuries were much more severe than they actually were in the end. So, I think I was just contemplating life and that I could have been dead or in a wheelchair myself and that was not a reason to not respond. And Steve had just been doing some rehab in Russia and had got back and so he wasn’t working, he was doing a lot of rehab at home. So, we had a lot of time on our hands really so we started talking and we met within two weeks.
CANDY – Did you meet in the pub at the end of the road?
MEL – No, we went to a nicer pub. [Laughter] And we just never stopped talking. And because neither of us were working that whole summer we just sat out in his garden and talked and got to know each other and, yeah, it kind of just went from there.
On our first date I had to assist him to get out of his chair straight away – Steve’s got a spinal cord injury and can’t transfer – so his disability was there straightaway and was something that we had to deal with straight away.
CANDY – How did you find that? Were you nervous?
MEL – Yeah, of course I was nervous! Nervous of doing the wrong thing.
CANDY – And when you help him transfer what does that involve for you guys?
MEL – He’s got sliding – well, not anymore – he had a car at that point so he used to transfer with a sliding board. So, it was just to get his wheelchair out of the boot and put it there and then he would use the transfer board. But yeah, I’ve got a friend who’s blind and I think that did open my eyes a lot around disability and how to be normal, I guess, and how to, I don’t know what to say, to act normally around disabled people I guess. That made a difference.
But yeah, I think the first few weeks I did have a lot of anxiety about how I feel about it; where do we go from here; what happens next. I guess luckily because I was up in Manchester and he was down in Birmingham and every time I drove down to Birmingham I thought the weather’s a lot better down here. [Laughter] So, I in the end came down to Birmingham. Obviously his house was fairly accessible for his needs so I think that made a lot of stuff easier in the beginning when we were getting to know each other.
CANDY – What about you, Jo, what’s your story?
JO – I met Rob by moving in with him, which is a fairly forward approach. I went to Warwick University and when I graduated most of my friends were moving back to their home towns and I didn’t want to. A friend of a friend was living in a big shared house, there were 13 people there, and I figured that would be a good way to…
CANDY – That’s a very big shared house.
JO – Yeah – a good way to make a new social group. I moved in because about three people that year were moving out, all of them to get married. And I remember standing in the living room, boxes in hand, and Rob saying jokingly, the only way to move out of here is to marry one of us. And five years later that’s exactly why we moved out the house was to marry each other.
CANDY – Excellent.
JO – Yeah, so we got to know each other very slowly actually. When I first moved in I was actually dating somebody else so we just hung out and were friends for a year or so. I was teaching, so that summer that I moved in I had a long time just chilling out in the house, and Rob was doing some work from home. He was mostly running club nights, so I used to go and hang out and then do some late night flyering with him, giving out flyers in the freezing cold. And then one day he came and said, ‘Do you fancy hanging out for the day?’ he was off somewhere to ask a company to bend some metal to make some new crutches for him. So, I think that was a good chance for us to get chatting about his disability.
Rob has an incomplete spinal cord injury so he’s tetraplegic but he can walk a few steps with crutches. And he tends to alternate; these days he uses his wheelchair a lot more, but back then he was using his crutches a fair bit. And it was probably my first chance that day to see how his disability affected him day to day outside of our house, which he’d obviously made fairly accessible and was pretty independent inside the house.
CANDY – Yeah, it’s a whole different ball game when you step outside.
JO – Once you’re outside it is, isn’t it, yeah. But I think even so for us, because Rob was living independently, he had already had his accident maybe seven or eight years before we met, he was doing pretty well and was pretty independent. So, in terms of how his disability affected us I think for us as a couple it was quite gradual. Just originally when we started dating and going for drinks and meals it might be the odd step we might have to overcome, but other than that there wasn’t anything much more involved until we were further on in our relationship and started looking at travelling together or getting a place together or having kids when we were married and things like that.
So, it was quite nice for us to have a gradual getting to know him and how his disability affected him, as well as getting to know all the other sides of him. But yeah, it was certainly good living together right from day one.
CANDY – I was going to say, it’s gradual but also not gradual.
JO – Also not gradual, yeah, you’re right. What about you Candy, how did you meet?
CANDY – It’s sort of the same insofar as the ‘gradual, not gradual’ thing goes. So, I actually met Max because I knew him through a friend, and that friend was working as his PA. He works in finance and so he’s got PAs who work with him during the day to access the computer – he’s got cerebral palsy so things like typing are not possible for him – and taking notes, and feeding him lunch. No kind of personal care stuff but just everything that a PA might do. So, then I started working as his PA as well some days a week and then we realised we liked each other. I think I realised first. And we started flirting.
Then bang, kind of everything happened at once, and we moved in together. I still work a couple of days a week as his PA in the office, but outside of that I do all of his personal care. And on the days that I don’t work I go into the office to do his personal care. So, there was a kind of transition there where going from not being together to being together, also immediately I was his full-time carer. So, that’s sort of all at once and gradual.
JO – And how did you find that transition, Candy?
CANDY – I get asked that a lot, and especially at the time I was asked that a lot about, ‘how are you doing this?’ and I really didn’t have an answer for it, and I still don’t because it just felt and feels so normal. It seemed like a totally natural progression from our friendship to our relationship. I was always happy to do those things for him, to help him wash, help him get dressed, everything like that. It never really seemed like a transition, I suppose; it just came with the relationship for me. I think he had more anxiety about it than I did in the beginning. He didn’t want to rely on me or didn’t want me to feel burdened by him and by his needs, but for me it was never a problem.
JO – Yeah, and I think the word burden is interesting because it’s something that is used so often for carers and partners of disabled people. It’s one of the things I think that oozes through a lot of comments that people might make, outsiders who don’t know us or don’t know our families.
CANDY – Absolutely. And I think that’s also because of the reputation that you get. When we were first together the only comparison that people were having when I was telling them about our relationship was, oh it’s like that film Me Before You, and I was like god, I really hope not, because we know what happens at the end of that film.
JO – I had such a problem with that book for exactly that reason: for not presenting what was my day to day reality of it, not being a burden, it not really being an issue and it not necessarily being a wholly negative thing either, having a disability there are pros and cons actually. Rough with the smooth has become our catchphrase. And I think well, I just found that so one-sided. You’re right, it’s frustrating when you’re not living that story but it is all that other people know.
CANDY – Of course. Obviously there are people who become disabled and become very depressed about it, so there is I’m sure some truth in that story for someone, but the reactions that I had, that Max had, that people we know had, it just seems mostly offensive as far as I’m concerned. It’s just not a truthful depiction.
JO – I wanted to say about that. I think when you look at a lot of media portrayals of disabled people, and when you look, I looked into that film and they were saying they went and interviewed people in spinal units and quite often when they do their research they tend to speak to people who are newly injured or have newly had accidents.
CANDY – Exactly.
JO – And that is a difficult time. There’s a lot of transitioning, a lot of changes for everybody in the family. So, I think you get a very different story if you only interview newly injured people.
And likewise I guess with Max, was he born with CP?
CANDY – Yeah. It’s a condition that either you’re born with or it happens very shortly after you’re born. For him it was a result of a very traumatic birth for him and his mum. Yeah, so he’s grown up with it and lived with it, so it’s a bit different. He doesn’t know a different life I suppose, and so for him it couldn’t be further from his experience.
MEL – Oh guys, we’re really getting into this now. There’s not going to be any time left for any other questions. Jo, do you want to pick another one?
JO – Okey-dokey let’s have a look. This could be an interesting one. It says: we’re taking it as read that people sometimes say insensitive things about you and your relationship. So, what comments have really stuck in your mind?
I guess we started touching on that Candy with some of the responses when you initially started your relationship with Max. Have you had any particular comments that stick out?
CANDY – There’s one from a stranger, it’s one that really stuck with me, partially because I couldn’t think of a good comeback to it at the time and partially because it was just so absurd. Someone in a bar once came up to me and asked me how much he was paying me, how much Max was paying me.
MEL – Wow!
CANDY – Which was offensive to me, was offensive to him, was just one of the weirdest things anyone has ever said to me. And I was a little bit tipsy and I’m not very good at comebacks at the best of times so I just went, aargh, and ran away.
MEL – You always think of the comebacks an hour later. Too late.
CANDY – Yeah, exactly. I think he thought I was a prostitute. Either that or, I don’t know, like some kind of escort or… It’s horrible because it suggests that he couldn’t find a girlfriend without paying them, and it suggests that I wouldn’t want to go out with him if I wasn’t being paid. On both sides there’s a kind of grimness to that question I think. And also it’s just super personal. What if had been being paid, you know?
MEL – Yeah, and I guess that shows disabled people generally have little privacy and people often make personal comments or questions, and that does flow over into our lives as well, doesn’t it, as partners.
CANDY – Yeah.
MEL – People ask a lot of personal questions of us and our relationship that they wouldn’t to able-bodied couples.
CANDY – I’ve been asked how we have sex. Sorry to get right in there with that one – literally. [Laughter]
MEL – Yeah, I’ve been asked similar.
CANDY – And it’s a strange one, it’s a strange one to be asked because you wouldn’t ordinarily be asked that.
MEL – Yeah, that’s interesting.
CANDY – I never know how graphic to get, because sometimes I want to get really graphic to make them feel…
JO – Shock them. [Laughter]
CANDY – … to make them feel awkward.
JO – Really graphic. I’ve had a similarly shocking conversation. This was probably when Rob and I had been together only about six months. And my boss called me into her office, I presumed for a meeting, and in fact she wanted to sit me down and tell me that I should seriously consider my relationship with Rob because of how much he would limit me, how much he would hold me back in life and that I should get out now before I got too involved.
CANDY – Oh my god.
JO – This was in work hours, in the office, in her capacity as my boss. It still shocks me to be honest. I don’t often come across that much bluntness and that much of a crazy attitude. But early on in the relationship that was quite surprising.
CANDY – Yeah, I think early on is when I’m remembering most of my insensitive comments as well. I think it becomes normal for everyone around you, but in the beginning, I mean my family had some questions as well, ‘how much are you going to do for him? Will that limit you from doing other things that you’ve always wanted to do?’ and stuff like that. They’re not nice questions to hear.
JO – Mel?
MEL – Yeah, the sex side of it we had IVF to have our daughter, and so there was an automatic assumption that the problem must be with Steve. We made a conscious effort to say there was an issue on both sides, because it’s that assumption, isn’t it, people just assume.
But I’ve actually had some comments by other disabled people, so that’s interesting. Steve’s a tetraplegic which means that all four of his limbs are affected. He doesn’t have grip in his hands. And so I’ve had paraplegics come up to me and say, ‘are you his PA?’ as in you can’t possibly be his wife or girlfriend.
CANDY – I’ve had that one too.
JO – Yeah.
MEL – Because he’s a tetra you’d be better off with me; I’m only a para. [Laughter]
CANDY – Oh god!
JO – Wow.
MEL – Not in so many words but there is this kind of hierarchy: my impairment is better than your impairment. I have picked up on that a few times.
I have lost some friends since being with Steve. The best example I can think of is I had a really close friend who we went out for dinner, the four of us, and when Steve went to the toilet my friend’s partner said to me, ‘he must be a really great guy for you to be with him’ and I was just like, on the face of it that seems like a nice comment but it actually isn’t, because it was like he must have something to compensate. [Laughter] And he is a great guy.
And the other side of it was the whole evening we were together he didn’t ask Steve one question. He just basically blanked him the whole evening.
CANDY – I really hate it when people will talk to me rather than to Max. Max is perfectly capable of communicating, very capable of communicating.
MEL – I agree, particularly when they’re asking about something to do with your partner. You get that a lot in airports and shops, ‘does he need this?’
JO – ‘Does he want a chair?’
MEL – Yeah. ‘Can he get out of it?’
JO – I just turn away now and I just go doo, doo, doo and just kind of look away, and people get the message. So, that doesn’t happen as much now I think because my body language is like don’t talk to me.
CANDY – I turn it around and I’m like, ‘I don’t know. Max do you want a chair? Can you get out of that?’
MEL – Really pointed conversation.
CANDY – Yeah, really, really and then Max will be like…
MEL – When we were on honeymoon we were constantly mistaken for either brother and sister or carer and caree. So, we took to lots of public snogging just to make people feel really uncomfortable when they’d presumed we were brother and sister.
JO – Excellent.
MEL – That’s an answer to it!
JO – That’s interesting actually because I think we maybe are purposefully more affectionate when we’re out in public. That’s interesting.
CANDY – I think we are too, yeah. I think you’re showing something to the world, you’re saying: look at us, we’re different, but we’re in love and we exist and we’re here.
JO – And showing something of the physical attraction. Because I think people can see why you might get on as friends, and I think maybe taking that leap into yes, I find Rob physically attractive, it is a bigger jump for people. I think they see the disability first, whereas I just see a fairly good looking man in Rob. [Laughs] So, I think being physically affectionate is sometimes what makes people feel quite surprised at your relationship. I don’t know; that’s the points at which we’ve noticed people.
MEL – I think I’ve noticed the difference since having a kid.
JO – Yes.
MEL – We get much less of that ‘I’m his PA’ because our daughter sits on his lap; they see us more as a family unit. And interestingly we have noticed since having a kid many more people will talk to Steve and engage with him and there’s less avoidance.
JO – We find exactly the same. And actually the comments are much more positive, lots of ‘oh cute’ or, ‘that looks like a great place to ride’. Our little boy rides on Rob’s lap as well.
CANDY – Oh now I’m jealous of you guys.
MEL – He’s going up in the world.
JO – You need to rent a kid.
MEL – Take mine! [Laughter]
JO – I guess it’s a bit like guide dogs and assistance dogs: it’s the same kind of ice breaker. The child or the dog is like this normal object that is in everybody’s lives.
CANDY – I’m sure your child will be really happy to hear this one day that they’re a normal object. [Laughter]
MEL – Just like a guide dog.
JO – I don’t know, I think there is something.
MEL – I agree. It is an easy opener with conversation, isn’t it? You can chat to the child if you’re not quite sure how to handle chatting to the adults.
JO – To the scary disabled person.
MEL – The scary disabled person, exactly. [Laughter] Right, we should probably try another question. Candy, do you fancy picking us one?
CANDY – Absolutely. What I’ve got here is: what’s the biggest access issue you have? Which is interesting. I suppose we’ve all got partners who have got wheelchairs so the obvious thing to think of is ramps. But for me I find the ramp is the least of our worries. We can kind of pop the wheelchair up over certain small steps, but it’s more things like bathrooms. Sometimes you go to quite classy places that have got lovely regular bathrooms but the disabled toilet is just this dingy horrible hovel that’s got piles of stuff being stored in it and you can’t get the door open or closed. At work where Max works they keep the post sacks in front of the door, like the mail sacks, so to get into the toilet we’ve often got to kind of negotiate our way passed those. So, there’s that. How about you guys?
MEL – I guess access when you’re going out, on the odd occasion. As soon as me and Steve got together I said, right I’m ditching the umbrella, because there’s no point in having one of those, get myself a proper raincoat because often Steve will need a push up ramps. But I find the times you want to glam up or wear a dress or something, I remember the first time me and Steve went somewhere and my handbag got caught in his wheelchair. If you’ve got high heels or a dress or anything like that.
And the whole access side you end up being sweaty and flustered, like you say Candy, trying to get into a toilet and getting your dress out of the way, that side of it.
CANDY – I end up carrying so much stuff as well because Max can’t carry anything. Sometimes I just feel like I’m just carrying so many things at once, and then I’ll drop everything and I’ll be like why do I drop things and nobody else drops things, and then I realise wait, it’s because I’m carrying twice as much stuff.
MEL – Yeah.
CANDY – But then I can also hang things off the back of his wheelchair. And if I start to get tired I can lean on it so that’s nice.
MEL – That’s handy.
JO – Yeah, I would say exactly the same actually. The need to sort of plan ahead more than other people. I’m constantly google imaging the entrances to places to try and figure out if they’ve got steps in or if there’s really an awkward situation for us, and asking questions about disabled loos and that kind of thing.
I remember not so long ago a friend was booking a hotel for us and I said, ‘yeah, I’ll phone them up and book’ and she said, ‘no, no, no, I’ll book a room for you, that’s fine’. And I was like, ‘okay, you need to ask the following questions about have you…’ So, she phoned me back, ‘I asked them if they’ve got an accessible room and they had no idea what I was on about, so I think it’s okay’. It’s just that planning ahead, that extra layer.
We’re fairly flexible particularly because Rob can do a few steps, either with his crutches or if we have to go up a couple of stairs he can lean on my arm and on the wall and what have you. So, it’s not a complete impossibility for us, which is really, really useful. But it just makes everything a pain, particularly like you say when you’re going somewhere posh or you’re at a wedding and you’re in heels and a dress and he’s in an awkward suit, everything becomes a little bit more challenging in that sense.
MEL – All right, I’ll pick out the next one. We feel it might be a bit intrusive asking this one, but sex. So, I guess they want to know what our sex lives are like.
CANDY – Excellent. [Laughter]
MEL – I talk a lot about sex and relationships as part of my work with disabled people and families, so I’m quite open about it. I don’t talk about intimate details of our sex life, so when you get those kinds of invasive questions. But generally my experience has been that being with Steve has been the best relationship I’ve ever had in my life, and that includes sexual experiences as well. I feel that because of the impairment we’ve had to learn to communicate better, we’ve had to learn to be creative, to be more flexible around our gender roles and that kind of stuff. And in the bedroom as well I think Steve always asks what it is that I would like, so my needs are important. And I know that when I’ve talked to people in non-disabled relationships sometimes they don’t communicate as well or they struggle to be honest with their partners or they might put up with stuff that they don’t really like, and that’s never been the case for us.
How about you Jo?
JO – Yeah, I think I’ve found the same really. I think what Rob had learnt through his accident and has taught me is, and is continuing to teach me, is the importance of just talking about absolutely everything and nothing being off the table and nothing being embarrassing or undignified or taboo. And I think that that extends as far as our physical relationship as well.
As you were saying, unlike with other relationships maybe where people don’t feel able to talk until they’re quite a long way into the relationship, I think we started by talking lots about what Rob’s needs were, what he could feel, what felt good and what didn’t, and how that might be different to an able-bodied person. And similarly talking about my needs and what I enjoyed, and aligning that with what he was able to do and that kind of thing. And I think that’s really healthy for any relationship just to be able to talk about anything. And I think that does lead to the best possible relationship in all senses, physical and emotional.
Yeah, we just found talking and laughing really, really important.
CANDY – If you can’t laugh during sex then I don’t think it’s good sex.
JO – It’s not going to be good sex. I totally agree with you. You’ve just got to laugh at all the times you get awkward spasms at the wrong time or things go horribly wrong; you tried something and realise that you’re both just falling over. Yeah, so talking has been really good. And Rob totally led the way on that.
The other thing I found to be really helpful, although still slightly makes me blush, is chatting to other disabled people and other couples that involve someone with a disability. Rob will quite often come back from training, he does wheelchair racing and that kind of thing, and say, ‘oh yeah, I was chatting to so and so about what they do about this’ and I’m like, ‘why have you been talking to them about our sex life?’ But actually, particularly when it came to trying for a baby and things like that, actually it has been really brilliant having a community around us who also have this sort of unique set-up that’s different from our able-bodied friends.
CANDY – That’s amazing.
JO – And whilst everybody’s bodies are different and some tips they’ve given us haven’t worked and some things have, just being open and sharing with them as well has been really useful. We were really struggling when we wanted to try and have our son, and again we’re trying for another baby and that has been a really difficult, and we are a long way into the journey of waiting to fall pregnant this second time. And chatting to other friends who are also trying for a baby with a disability, even though the things that work for them might not work for us, is a really brilliant way to offload and to share advice and to feel like you’re not only with these particular challenges that other able-bodied couples just don’t get and don’t understand.
MEL – Okay Jo, do you want to do the next one?
JO – Let’s have a look. Here’s a nice one: what advantages are there in having a disabled partner?
MEL – What, besides the parking?
JO – The parking, yeah. [Laughter] Queue jumps.
CANDY – No queueing. The thing I said earlier about leaning on the wheelchair, oh my goodness yeah. And sometimes I sit on his back wheel when I get tired as well, like if we’re in a museum or something, that’s really good.
JO – Yeah, or I’ll just sit on his lap. Until my son stole the place that was always our best place at gigs.
CANDY – Yes, definitely.
MEL – Can I say something that’s very deep?
CANDY – Go for it.
MEL – As well as the parking and free theatre tickets, I think the main advantage for me is that because of Steve’s injury he has a different view of life than most non-disabled people that I know. And that has been the biggest advantage of me being with him. I think we’ve both had a lot of personal growth because of reflecting on his experiences.
JO – I totally agree with you.
CANDY – Yeah, me too.
JO – I think we’ve really learnt not to sweat the small stuff and just what’s important, what we want out of life, that kind of thing.
CANDY – And how to ask for it as well, because for Max he needs to ask for everything to be done for him or with him. And he’s so, so, so good at communicating exactly what he needs and how he needs it to be done. And for me I learnt that really quickly: I can do that too, I can ask for what I need and I can communicate it. So, we communicate with each other and other people.
JO – Yeah, and how it’s okay to ask for help, as an able-bodied person or a disabled person.
CANDY – Exactly.
JO – It’s okay to ask for help. And actually people really love helping.
CANDY – Yes, sometimes too much! Too far the other way.
JO – That’s a good one. I like that question.
MEL – Another question: does your partner have a personal assistant? If so is it awkward having a third person in your home? And interesting things that have happened?
CANDY – That’s a great question.
MEL – We could talk for five hours about this. [Laughter]
CANDY – Yes.
MEL – Interesting things that have happened. Yes, we have a personal assistant. We have had brilliant ones and we’ve had some not so brilliant ones. And I think Steve could write a book about his PA experiences.
Some interesting ones: we had a male PA for a while before we had our daughter who once came into the bathroom whilst I was sat naked on the toilet having a poo.
CANDY – Oh god! [Laughter]
MEL – I wasn’t really too bothered about it, but he literally said he couldn’t stay and walked out the door.
CANDY – The PA said that?
MEL – The PA yeah, because he was so mortally offended. Because it’s like it’s okay for Steve not to have any privacy, but as a partner I must have this privacy, that’s how the role division is set up. He did come back the next day, but he was on the verge of crying; he felt that he’d violated my privacy.
But then some really good stories: when our daughter was born it was a very, very difficult birth and, I don’t know if we can say this on a radio show, but there was a lot of blood everywhere. And in that sense our PA, who we’ve had for seven years, was just amazing in mopping up blood [laughs] as it kind of leaked out of places in the house, and really stepped up when we were kind of like it’s not really her job to do that, but she could see that I could not manage at home. So, she kind of became my PA for those two weeks.
CANDY – I think that’s what the role of the PA is a bit when you’re in a relationship: they’re there to assist you in looking after your partner; they’re there to assist your partner in looking after you. I mean, obviously you don’t want to expect too much of them of course, but I think that’s a really great example of what I just said, about the role of the PA in the family. They don’t exist in a vacuum I think is what I’m trying to say.
MEL – Yeah. I think it’s very difficult. Literally I have just come from a social services assessment now, and it was my needs are not considered in that; it’s all about personal care needs and that’s it. We feel that the PA is a part of the family and it’s almost like we have this triangular relationship, but that’s not necessarily how the council or social services see it.
JO – So, do you guys have a carer, Candy?
CANDY – We’ve got a guy who comes in in the mornings to help get Max ready for work otherwise he would be late every single day if it was up to me. And he also will do odd jobs stuff, like taking bin bags out that I can’t really do; just anything that I suppose Max would do if he was able-bodied around the house, that’s what our guy Alex does. He comes in in the morning and wakes us up. I don’t have an alarm clock, I’ve got a man for that. [Laughter] It’s a very strange situation – or it felt very strange in the beginning but it feels totally normal now. And every now and again we actually have to use an alarm clock and it seems barbaric after having a person to wake you up.
So, yes, we do have a part-time carer coming in.
MEL – But I think it’s a double-edged sword, or that’s my thoughts on the PA: on the one hand it’s a blessing and it’s great to have them around to help out and ease the stress; but on the other side there is that invasion of privacy that’s there.
CANDY – I absolutely agree with you.
MEL – And sometimes we choose, when we go on holiday, not to take a PA and that I will do the personal care so that we just have more time for us, time to get up when we want, have a lie in, breakfast in bed and those things.
CANDY – Yeah, I totally agree with you. And also having someone come in and touch all of your things and put them in different places, there is a certain element of lack of control over your environment there, and that’s been a real learning curve for me to just get over myself. And also sometimes we do want to reclaim our space and it doesn’t belong to the carer, it belongs to us. So, yeah, I totally agree with you. And we’ve had our share of bad carers as well.
JO – It’s really interesting listening to you guys chat about it because we don’t have a carer. Rob doesn’t need one, and the little adaptions or care that he does need I take care of. But we’ve always talked about if in the future he needed, if age then impacted on his disability and it got to the point where he did need a carer, would I do that or would we look at a PA. And I think when we first got married we were fairly sure that we would look into hiring a PA in an attempt to keep our relationship quite clearly husband and wife and not introduce that level of personal care. And now the longer we’re married the more I think well, actually maybe I would take on a fair amount of that and it just wouldn’t really faze us. So, it’s really interesting to hear both sides of what it’s like to have a PA with you.
CANDY – I mean, I’m really glad that I’m Max’s primary carer. I get a lot of joy out of that personally. For a long time in my life I just wandered through it not really knowing what I was for and what I was meant to do, and this for me just feels like the most normal thing, most natural thing I’ve ever done.
I would like to look after Max forever, but because he requires 24-hour care I can’t take that all on, like all 24 hours all on my own.
JO – And I guess as we were saying with other issues the key is absolutely to talk about it between the two of you and find that balance that you’re both happy with, and that that would be different for every couple. But yeah, just to talk about it.
CANDY – Absolutely. And obviously one day when we have kids the whole dynamic will change again and we’ll have to have more conversations. So, yeah, it’s an evolving thing I think: different periods of your life you need different stuff.
MEL – Okay, I think we’ve come to the end of the questions, we’ve covered them. Is there anything else that we want to share about being the partners?
JO – I guess I would just want to make sure that, in amongst us having a bit of an offload in some of the negatives that happen, just to say that it really hasn’t been a massively big deal for us that Rob has a disability, that our relationship is, as you said earlier Mel, the best of my life and that 99% of the time Rob’s disability isn’t a factor.
MEL – Yeah, I would agree. And I think what’s really solidified our relationship is that the disability is our mutual identity, so because I’ve experienced similar negative experiences from members of the public that Steve has I really feel when we go into like assessments with social services or Motability we go as a couple, and I’m like his little caged Chihuahua.
CANDY – Yeah, I feel the same, just ready to fight for whatever’s needed.
MEL – I’ll say to Steve, ‘I’ll be quiet, it’s about you, but if you want me to release the beast…’
CANDY – The beast will be released! [Laughter]
MEL – I feel like it’s given us a real sense of solidarity. Yes, we’ve lost quite a few friends because of it, but we are more selective and we’ve gained new friendships that are much deeper and less superficial. I kind of feel sad for a lot of people that can’t see beyond the superficial bit that your body is different or works different; there’s so much more to life than that.
CANDY – I totally agree.
JO – Candy?
CANDY – It’s been amazing talking to you guys. I know you touched earlier on having support networks around you and being able to talk to other people like you, and I’ve actually never really talked to anyone else who’s in a similar relationship to ours. So, meeting you guys has been really amazing and I hope to stay in touch with you.
JO – That would be lovely.
MEL – Yes, lovely.
JO – It’s been really nice to chat to you guys too.
MEL – That’s the end of the takeover show guys. With special thanks to BBC Birmingham where Jo is right now, BBC Radio Derby, and to Lucy Edwards back in London. The producer was Damon Rose. If you want to get in touch email firstname.lastname@example.org, tweet @bbcouch or find us on Facebook.
CANDY – And please immediately like, share and review this podcast so that others who would like to hear it can find it.
JO – Thanks for listening. Bye now.
MEL – Bye.
AUDIO INTRO REPRISE: “If you want me to release the beast…the beast will be released!” [Mel then Candy, rhyming, with echo]