'The big decision' talking parenting, disability and fertility

Disabled guests Emily Yates and Damian Weatherald reflect on whether they should be parents.  They chat with host Jennie Williams from Enhance the UK about the factors related to their impairments that they need to consider when making this decision.  

Transcript

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Jennie Williams: 0:07

Welcome to the Enhance the UK Undressing Disability podcast where we strip the taboo on all things sex and disability. So today is quite strange because I am hosting and we've got Emily Yates. She's one of our guests who's normally the host. So it she's sitting on the other side. And we've got the lovely Damian from Bedroom Adventures also as our guest. So welcome to you both. Thanks for coming on. Today we are going to be talking about parenting. And you both currently don't have any children, do you? That's why you look fresh faced. And I don't! I have two young children, I would say probably all you need to do speak to me. And then you might change your opinions completely on becoming parents. But today really, we wanted to talk about the kind of more serious side of deciding whether somebody with a physical disability wants to become a parent. And it would be really, really nice because we've got a male and female perspective on this. So just to start, we don't normally go in depth particularly or need to about people's disabilities. Actually, for this, the purpose of this podcast, I think it is important if that's okay with the two of you.

Damian Weatherald: 1:26

So just to talk a little bit about your disability, so people understand where you're coming from, but making this decision. So, Damien, do you mind starting first kind of introducing yourself and telling us a little bit about yourself? That'd be great. Yeah, that's fine. Hi, I'm Damien. I'm 40 years old. And I have a condition called Ehlers danlos Syndrome, which is a genetic condition, which is affects the collagen in my body, which means that my joints dislocate very easily. I have problems with my heart, my eyes, and other things that go along with it. Gastro problems, it's, it causes numerous issues with my body.

Jennie Williams: 2:08

Okay. Thank you, Emily ...

Emily Yates: 2:11

I am a wheelchair user with cerebral palsy. So I've had cerebral palsy since birth, I became a wheelchair user when I was nine, due to a failed operation that tried to perfect everything and didn't. And so I've been a wheelchair user for 20 years now. And I would say really, that the only way in which I'm affected in the fact that I can't walk and require separate access, those kinds of things. And, and on and off, probably about two or three times a year, I experience really quite bad pain due to scar tissue, and the pins and plates in my legs, metal due to the change in weather and things like that. So that's something that I think as I've got older has become a little bit more serious.

Jennie Williams: 3:00

We really decided that we were going to do this podcast because I've had conversations with both of you individually about this. Obviously Emily and I weren't we working together for a long time, we've had lots of conversations, and every time you come and stay with me and my children, you asked me lots of questions about parenting and and I'm always thinking, Oh, god, oh god, am I completely putting her off for life? But obviously, this is a serious, this is a serious thing. And probably it doesn't get spoken about enough. Erm, so can I just ask both of you, really? And maybe you can start by .. Why is it that you talk about this so much? Do you think you're thinking about it a lot more because of your disability? Or do you think maybe you'd be thinking about it and analysing this just as much if you didn't have a disability? Because that's kind of the nature of your personality?

Emily Yates: 3:56

it's such a good question. And I think for me, it kind of comes down to the crux of it totally. And I, I'm the kind of person that overthinks everything and analyses everything.

Jennie Williams: 4:11

I've said that about you, Emily Yates

Emily Yates: 4:14

I'm that kind of person anywhere for sure. And I'm also very much career driven. And I think I'm quite ambitious. And my career has been a big part of my life and a big part of who I am. So those two factors are definitely there. But I think without a shadow of a doubt, I am thinking about this and contemplating it, and trying to time it and plan it much more because I'm disabled and I'm a wheelchair user and I have to think about all the physicalities and the practicalities that I think will come with being a mother. And so it's one of those really difficult unknowns isn't it because I'm not a parent. I'm almost pre empting, how I might feel, what might happen. But it's almost impossible to do that at the same time. And as everybody says, There's no perfect time to have a baby. So I'm almost balancing those different factors.

Jennie Williams: 5:20

Obviously, Damian, and Emily, you've got very different disabilities. And obviously, Emily, if you were going to make the decision to have the baby, it would be you physically carrying the baby, unless, of course, you decided that you were going to use a surrogate, which lots of people do. I mean, is that something that you've ever considered or thought about using a surrogate? Or is that something that you'll think you've always thought that you would physically? Because I mean, have you ever spoken to anyone about physically being able to, to carry a baby yourself?

Emily Yates: 5:50

Yeah, that's really interesting. It's something that I've not particularly ever thought about. But I'd be totally open to if that was ever needed, I think, I think really, you've hit the nail on the head there, I've never really spoken to anybody about whether that would be a necessity or not, whether it will be a medical necessity. So it's not something that's ever really been in my mind, maybe that would be a really good first port of call to actually have that discussion with somebody. I don't know if I am able to carry a baby to term. And I think from what specialists have said previously, we see no reason why somebody with cerebral palsy wouldn't be able to, and but how that how that applies, personally, to me, I'm not sure but I would definitely be open to a surrogate or even adoption, actually, if that, you know, situation ever arose that that was the best way forward.

Jennie Williams: 6:50

And Damian, is different for you. Because obviously, you wouldn't physically be carrying the baby and get it. So lucky, though. I wish I had been one of those women who loved being pregnant, but I wasn't I was one of those really miserable women for the entire entirety of my pregnancy. But Damien, obviously, you've been thinking about this with you and your partner. Is it your wife that you're married? Yeah, your wife? So do you mind sharing with us kind of the conversations that that you you've been having? And you and I have had to get us to this point that you're on the podcast?

Damian Weatherald: 7:23

Yeah, to start with, like, because my conditions, genetic, when I was growing up, like I was diagnosed, at 14 years old. And then for the rest of my teens, and probably early 20s, I was always adamant, didn't want children. Because I didn't want to pass it on. As I got older then. And like, I've been with my wife since I was 19. And it was, and then as we got through like our 20s, it was like, maybe we should think about it, because I was starting to think, yeah, maybe I would like children. But I'm always got that frightening thought in the back of my head about passing the condition on. And as I've got older, I've thought about it more. And then my wife talked about it, whether it's worth the risk. So about five, six years ago, we went see a geneticist to see, to get the exact numbers of what chance would be passing it on. And he told us, it would be between 50 and 75%, of passing EDS on my wife has conditions as well, that can be passed on. And she's celiac. And there's a type of arthritis that runs in the family that can be passed on as well. So to put all that in, really proud our heads and it was do we want to take the risk? And I've looked at things like can I cope with the guilt? Which maybe sounds strange to some people, but I think I would feel guilty if I did pass it on. And then it's the thought of if my condition gets worse, which it probably will, can I physically help bring a child up? And yeah, it's a very difficult conversation.

Jennie Williams: 9:04

And all those conversations still happening, or have you get to some kind of conclusion or still happening?

Damian Weatherald: 9:10

Still happening. Can't make, still can't make our minds up and obviously, given all that, and naturally, time isn't on our side. So but yet we still cannot make final decision on it. I've had people tell me over the years, I shouldn't have children because it wouldn't, it's unkind, it wouldn't be the right thing to do because of my disability. But I still Yeah, I have friends with babies, grown up children and I get like it when I see a baby. I still get broody and it's I'd love to have kids in that sense. But the psychological side really puts me off at the moment.

Jennie Williams: 9:51

And I'm going to ask, I mean the whole point of this podcast and the podcast that we run we talk about, you know, the erm, we speak about the unspoken a lot of the time. Are things that that are taboo and people are frightened about speaking about. And I put the same kind of question to you really Damien's thinking about? Or have you ever spoken about using a sperm donor? Is that a conversation that you and your wife have had or something that you would consider?

Damian Weatherald: 10:18

Then we haven't really talked about the sperm donor. We've like kind of skirted around it. And I'll be honest, it's not something I'm personally keen on. And we've looked at adoption. And someone said to me about adopting, so we had a little look into it. But some of the local authorities to me aren't over keen on people with disabilities adopting, which is a bit of a grey area. And so yeah, it's, if the.. I got, I did have a conversation with a geneticist about them getting put onto I think it's the 1000 genome project. And they would have never been to filter the bad sperm out. But because because of not having enough family members to do it, I couldn't get on to it.

Jennie Williams: 11:12

It's interesting as well, that, you know, I think it depends on maybe how far down the journey you are to how much you think about things. So just to share with you very briefly, my journey. I went through a lot of rounds of IVF, to try and have children. And I had two miscarriages to the point where I actually got an egg donor myself, and it was my cousin that donated her egg very kindly. And unfortunately, that didn't, didn't work. But I think I had to go along this journey. For me, in having children. And it was a very personal thing. And I got to the point where I decided actually, genetically, it doesn't matter. I mean, even though that baby would have been genetically connected, because it was my cousins, but equally, I would have used a donor that I didn't know, I think it got, I got to the point of my journey, that actually the genetics itself didn't really matter that much to me. But then that's easy for me to say, because years later than I naturally got pregnant, and I think the IVF kicked something in me and I was able to naturally conceive which two little miracles to be honest. But they're big questions. You know, they're huge, huge questions, and you're trying to take this on, it's hard enough to make a decision whether you want to have children Anyway, let alone with the genetics of that child or somebody else carry that child for me or whatever, you know. You both, obviously, because you both mentioned it. Damien knew more so but your partners are not not disabled. I mean, does that come into play your decisions as well, of kind of the responsibility as it were? What do you think there would be a responsibility on your partner's not having a disability?

Damian Weatherald: 12:54

Yeah, it would put some like if if like, like now, for example, I can have days where I really struggled to get out of bed and some days a have to be in the wheelchair, but then there's, like, I have problems with my shoulders. horrendously , which is one of my worst things, and I drop things, and I can't lift things. So the thought of me trying to cradle a baby for a long length of time, or things like that, and changing and carrying. I really think I would struggle. So them same sort of things would get put more into my wife and it's, I've got a look at is it fair to put all that on her as well?

Emily Yates: 13:32

Yeah, it's interesting, I, I feel very similarly to you Damien, in the respect that, I think, and for as long as my baby was a baby, I think my partner CJ would have a lot of a lot of extra work to do. And I'd probably, you know, be able to breastfeed, but he'd have to do a lot of the, you know, heavy, heavy kind of carrying and moving things about and just being there and being able to support not only the child but me as well, you know, if anything happened to me, or if I was experiencing any real difficulties physically, he may well have to erm, almost become more of a carer than he's ever been used to. And that's something that does bother me a little bit and we discuss this, we talk about it a lot. And he's absolutely desperate to be a dad. He would love Love, love to be a parent and, and he always says to me, you know, that i'll come into my own once, the baby isn't a baby anymore. And when I can take the child to do things like that is what I would love and I'd be really brilliant at. And he always assures me that the baby stage doesn't last very long. And which Jennie is is not in an agreement with that, but it doesn't make those thought processes any easier. So I think I definitely agree with you on all of that. But but then then also, you know, you You've been with your wife since you were 19. What for a long time, so I'm sure she'd be willing to do all of those things just as I know, CJ would as well.

Damian Weatherald: 15:11

Yay, it, she's had to pull up so much with me and like, like the journey I've been on as I've got older and got worse. She's been there all through it. So yeah, we work well as a team. And no doubt we will get through it. I think another thing, though, that plays in the back of my mind, but all it is a morbid thought is if anything happened to her, could I cope on my own?

Jennie Williams: 15:35

Yeah, I don't think that is, I think that's a really natural thought, regardless to whether you've got a disability, I think about it. I think about mortality, my own mortality and my partner's all of the time. And I think that most parents do. Because of course, it's it's a fear that you have even more once you have people, you have dependents. So it's it. It's a, it's a big, it's a big thing. Do you think that I mean, Emily and I were talking about this, both of you, for a living, talk about sex and disability, that's what you do. That's what you're known for? Do you think that almost kind of does that affect even more these decisions that you're trying to make? Is that kind of a hindrance? Because you feel like, Oh, wait, I should know the answer to this. And I can't ask, I can't have these conversations. I knowo, you are now. But do I have to be more candid in the questions that I ask? Or do you think that's a help that that that you, you can find out more about this information, because you're privy to it?

Emily Yates: 16:38

I think for me, it's a bit of both, it's a hindrance and a help, because I'm so much more aware of all of these things, I think, you know, from from being really, really good friends with you, Jen and from other people that we know, I've been aware of your journey and the trials and tribulations you've gone through. And you, because we work in this arena, we speak really openly about these things. And I'd be lying if I said that, that didn't have an effect on me not only as your friend, but also as a woman who might want to become a mother one day. And these things do have an emotional effect. So I think in a way it's helpful it's of course helpful to have these conversations and to be open to gain knowledge and wisdom wherever I can. But it's also a hinderance because you almost can't stop thinking about it sometimes, because you have this knowledge and wisdom and somebody that's a WhatsApp message away from getting you thinking about it again.

Jennie Williams: 17:37

And when you say that, do you mean the journey that I went trying to have a baby?

Emily Yates: 17:42

Yeah, I think for me the time that it took, and, you know, being really close to you throughout that process. And I think for me, one of the biggest things that I'm dealing with at the moment, you know, I'm 29, I know I've got some time left. But I also know that biologically, that time is diminishing as as the minutes go by, but I also know that physically and practically, that time is also diminishing, because I personally know, the older I am, the harder it will be for me practically, to carry a baby and manage all of these things. So I think for me, the time element of it, and witnessing your experience of that time element has been a really important factor.

Jennie Williams: 18:29

That's really interesting. I mean, Damian, the same question to you Really? Are they all albeit probably slightly, slightly different?

Damian Weatherald: 18:37

Yeah. I think, again, like a bit like me said, it can be a bit of both. I think we can... As a male, I think it's different. Because obviously, age isn't as big an effect is that as is for woman, but I think there's that much information out there as well. Now it can fry your head, I think, because I'm quite open, I'll talk about anything to anyone. And sometimes it can be a good thing. Sometimes it can be a bad thing. And like I said earlier, I have people who quite openly certainly. Now, you shouldn't be allowed to have children because what you have is genetic, and you could will pass it on, you should stop with you. And I get quite upset with that. And I'll get quite angry. Um, but cos, I'm open, I think it does help you get the positive sides like talking to yourself and Emily, you get it. I get a more of a positive vibe from you. So when talking about this, where we're from someone else, and yeah, it's hard to explain.

Jennie Williams: 19:42

No, I don't think so. No, I think you explained that really well. And I think you know, people can depending on what mindset you're in, of course, you can be easily influenced, you know, and, and in depending on which way you're feeling that particular day as well. It depends on how you want to be influenced. I mean, no one ever has the right to tell you. No, you con't have children or you know, you shouldn't have children. That's a very personal decision. And I do know, for example, my dad felt guilty for a long time passing his disability on to me, which is a hearing loss. And it really, there's, you know, I mean, I know that's different. Damian for you from your disability absolutely is. But from my point of view, no guilt needed, there whatsoever. I passed on my heart condition. I've got something called Long QT, and I passed that on to my youngest daughter. It's quite a serious heart condition. Do I feel guilt about that? Marginally. But would I not make that decision to have her if I knew that she was going to have that? No, I would still go ahead and do that. Maybe that's different, because I can say that again, because she's here and I know how much I love her. And it doesn't have the effects that it would do, Damian if your child had your disability. So they you know, it's different, isn't it? It's like very personal decisions. But I think guilt, I think you're always going to have guilt. Again, when you have children, you're riddled with guilt constantly, whatever. What do they say you're only as happy as your unhappiest child, which I think pretty much sums it up really.

Damian Weatherald: 21:17

It's a conversation I've had with my mom, she has guilt, sometimes still. And like outside, look, it doesn't matter. It's not your fault. You didn't know this was going on, because we're about 90% sure, that's where it came from was mom, so. But I think as well, one thing that does, like swim into the thought of having children is, when I was finally diagnosed, the condition was, there wasn't as much knowledge about the condition as there is now. So I think I was told for an example is, at 14 I was told. don't do any exercise, don't do any contact sports, basically stop doing anything like swimming or anything like that, it's going to cause you problems. It wasn't till I was in my late 20s, early 30s, I saw a specialist who said it was the worst advice I could have ever been given because it's caused more problems than help. I should have been taught to carry on exercising, doing things differently, but I should have carried on doing it. So if I ever little one, I would be er, who had the condition, I would probably be able to nurture them better than I was.

Jennie Williams: 22:30

Yeah, that that actually really brings me to my my last question. And it was, you know, we do this particularly you and I Em for a living? You know, we promote disability awareness. We try and educate people in this subject and try and help organisations. Damien, is obviously around the sex toy industry, but a lot about still talking a lot about disability and getting involved more and more in organisations like ourselves. Is does that, you know, have you seen change? And obviously, Damien, you said, you said that, but that change in the last few years, certainly from when you were children, and you were younger, to what it is now and how people perceive disability, to where it would be in the next 10 20 years if you were to have children now.

Emily Yates: 23:21

Yeah, I think I have seen a big change in perception of disability and you know, everything from as basic as you see disabled people in the media and on TV and in magazines. Now that I remember not really having a disabled role model. When I was younger, I think Ade Adeptian had just started playing wheelchair basketball, and he was a big, disabled role model for a lot of disabled people. But interestingly, I still do think that disability and parenting is the last taboo. I really do think that as far as we've got with disability and sex and disabled people having the right to sexual expression, being seen as sexual beings, we've almost that barrier between sex and then moving on to parenting hasn't yet been broken in my opinion. And I would be very interested to almost walk around a City Centre Street and do little voxpop interviews with members of the public and seeing a wheelchair user carrying a baby. I'd be really interested to see what those perceptions are. So I really do hope that that barrier is broken down in the near future and with the way that perceptions around disability have changed. I would like to think that that that is that is coming, that is happening. And but it is something that is still an element of the fear that surrounds parenting for me.

Jennie Williams: 24:52

And my like my last real question to you both is off the back of that and you know you saying about people's perceptions and? And that's really interesting for me to hear you say that because I actually didn't even realise as your friend think that that particularly would bother you people's perception. So that's actually quite surprised me, you've even said that. So that is interesting. But would there be anything that you feel that this is the last big taboo in your mind? Damian, I don't know, if you feel the same. With that, do you? Do you still do you think this is the big, big taboo still?

Damian Weatherald: 25:30

Yeah, and the whole thing about perception, it's something that weighs on my mind, because I said this now about other things apart from parenting. But if like, for example, if me and my wife are up shopping, she has to carry all the shopping. So people look at me, like, I'm a piece of shit sometimes. But because I'm not carrying the shopping, and she's doing it. So I sometimes think people perceive me in the sense of being a lazy person, if they saw me doing everything, where a baby was concerned, and bringing a child up.

Jennie Williams: 26:07

It's really interesting. I guess for them, because you've got, you're in a wheelchair, your wheelchair user do you feel that's. Just that, would you feel the same? or?

Emily Yates: 26:18

Yeah, I think one thing that's really interesting in this male versus female perspective is, it's interesting that you're, you might be seen as a lazy person, whereas I've got a big, burly, non disabled man who I think he's seen as quite saintly, and and i'm not necessarily seen as lazy. He's just seen as somebody that does everything. And isn't he great? So I think that is it. Perception is really, really interesting. But this idea of the males still having to be the provider. And is really interesting. And

Jennie Williams: 26:54

I think just to interrupt you there. I think it's interesting. And I think most most of my female friends who say the same thing, when we are out and about my partner, is, you know, it was pretty much equal 50/50 things we do. And when they see Craig doing things, I said, Oh, he's such a hands on dad. Isn't he a hands on dad, when I do something, not even a mention. And it's like my, you know, my answer is he's not a hands on dad. He's a dad. He's a dad, he does exactly the same amount as me. And they still that perception about men who do things, regardless, and especially added on top as a cherry on the top. They're dealing and they've got a disabled partner. Oh, my goodness. So yeah, I understand that. Um, so yeah, my last question that I kind of went around the houses with, do you think that there's information out there that's missing, or that could be out there? Or what do you feel would help you, if anything, to come to your decisions? Either way, whatever that may be.

Emily Yates: 28:01

I'd love to, I'd love to see a visual and a written case study from disabled people with similar impairments to mine, similar access needs to mine, who've gone out there and done it and stuck a middle finger up at the world and having the most amazing time, and living their best disabled lives. As parents, you know, to put it that way, I'd love to see that. But I would also love to see within that Frank, honest, relatable information, and advice on the best equipment to buy all of these kind of things from somebody who's done it and has had that experience, because I think one thing we really lack as disabled people, and I don't know if you agree with me on this or not doing it is I can't speak to my mom, about how I my experience being a parent. My twin sister has just had a beautiful baby girl. And she has cerebral palsy too, but she's able to walk it affects her very, very minimally, even then I struggle to be able to say to her, how would this work? Would I be able to manage that and she's very, very positive and says, get pregnant, you know, have a baby do this do that you'll be great. But even then, that I still don't have somebody that I can look to and talk to, that has this in exactly the same position that I am. And that would be so so useful.

Damian Weatherald: 29:30

Yeah, I completely get that because I've got no one in like, similar situation to me to talk to. And most of my, like male friends who have children, there are like are just some of them like I just go for it. It'll be fine. But if I try and explain why I don't, and why I'm scared, they can't like see it. They can't relate to it at all. And if I get from one friend's house and like little and runs in, they want to cuddle, I gotta be so careful. Whether I can lift them or not, because I can some dislocate something. So I've got, I always have put myself in a safe situation where the kids are around. I've had shoulders knocked our, hips knocked out by children. And it's frightening. So when I try to explain that to someone, but they can't relate to it in the slightest. So it would be good to have someone in either the same or a similar situation to discuss these things, because most people with EDS, who I've ever seen anything about, like, children, are women, so it's a completely different perspective. And, yes, it's a similar in the physical side, but not in the whole mental side. And it yeah, it would be good to even when you got like, when I saw the geneticist, there was no written material or anything to give me any advice to think. Was it fair? Wasn't it safe? Are there no pros and cons, nothing there at all?

Jennie Williams: 30:59

I think that it's such a huge, huge subject, isn't it? And we could keep talking about it, for at least probably another hour, at least, I'm very well aware of time. And I think that, really, this is a call to action to our listeners. If anyone has had this experience, you know, and has gone ahead and made the decision to have children or maybe the opposite, they've gone ahead and decided not to have children. If anyone wants to write into us, you can get in touch with us at Hello@enhancetheuk.org. I'm sure Emily and Damien would love to read any emails that you've got to send in or, I mean, there is, you know, there are blogs out there, obviously, and there are podcasts, there are other things, but sometimes you said Damien, it's quite overwhelming, you know, you start going down this rabbit hole of information, and, and you get completely overwhelmed by it. And sometimes you just need to have a chat with someone. So I think this is really I think this is a start, isn't it, the start of these conversations, certainly not the end. And we can start looking at, you know, as we do within Enhance the UK, taking on board, what people say to us and creating new resources and putting information out there. So

Emily Yates: 32:17

I think from my perspective, and it's been really amazing to hear your side of the story as well, Damien, and for what it's worth, I think you'd be a wonderful dad.

Damian Weatherald: 32:27

Thank you. And the same goes for you as a mum, I think we need to talk about these subjects more. Because for our society is evolving, and it's getting better where disability is concerned, there is such a huge steps to be taken. And if we don't help make that make this change, it's never gonna happen.

Jennie Williams: 32:48

Absolutely. And as you said, right at the very beginning, we're talking to me and you said there's never there's never really a right time to have have children. But it's such an individual. It's such an individual journey, and that it's only down to the two of you to decide so never be influenced by anybody you know, the way equally you know, you've always got the support from Enhance the UK and me and I will have my screaming children down the end of the phone on Skype of nice me. But both thank you both very much for being so open and frank in this conversation. I know it's a, I know, it's a hard one, like I said hopefully the start of more conversations to come. So thank you, Emily. And thank you, Damian.

Emily Yates: 33:29

Thanks for listening. For more information or to have a chat with us, please visit Enhancetheuk.org. From there you can also sign up to our undressing disability hub, a platform for professionals to connect and collaborate in the arena of sex and disability.