The Undressing Disability Podcast

Podcast 10: Trans Community & Disability with Sarah Stephenson-Hunter

• Enhance the UK • Season 1 • Episode 10

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This week we welcome Sarah Stephenson-Hunter,  Staff Disability Advisor and Trans Lead at University of Oxford.  Sarah is a disabled person who also identifies as lesbian and is a trans woman.


ETUK are proud that this podcast provides a fantastic opportunity for us to hear Sarah’s deeply honest account of her life journey, becoming part of the Trans Disabled Community. A section of society that doesn’t get much representation on other platforms.

 

Sarah’s story is so interesting and multi layered with challenges of disability as well as  identity.  

  • Becoming blind when she identified as male
  • An injury leading to complete sight loss
  • Marrying a female to try and ‘cure’ her uncertainty about her gender identity
  • The transition to becoming female.  

Sarah and Jennie discuss this process, the feelings it incurred and the painful road to acceptance. 


To contact Sarah, find her on instagram @simplyequalityuk

or Twitter @sarahshequality

 

Or join our Undressing Disability Hub where you can connect with her and other professionals in the field of sex and disability. https://undressing.enhancetheuk.org/

Audio recording:

Welcome to Enhance the UK Undressing Disability podcast where we strip back all things taboo on sex and disability.

Jennie Williams:

Hello, and welcome to the Undressing Disability podcast. We have a wonderful guest for you today, who goes by the name of Sarah Stephenson-Hunter, very posh double barreled name! I have to say I'm just a basic Jennie Williams. So I need to chuck another one in there Sarah. I'm really privileged to have you on today. Thank you so much for agreeing, because I know you're a very busy woman. Just before you start talking, I just want to explain to everybody how we met. We were talking on an LGBTQ+ panel, weren't we on Para pride panel. And we were asked to be guests on that. And we both basically liked what each other said on the panel.

Sarah Stephenson-Hunter:

Absolutely.

Jennie Williams:

And Sarah, you very kindly got in touch with me. And I was going to do that anyway. So you got in there first. Then I said, can you please come on and be a podcast guest. So thank you for doing that. So I'm going to hand over to you really, Sarah, and do you mind just introducing yourself and telling the listeners who you are and why you were on the panel in the first place.

Sarah Stephenson-Hunter:

Thank you, Jennie. It's great to be here. And yeah, it definitely was a case of when we met on that panel that we just connected, which is great. And I'm glad to have this opportunity on your podcast. So yes, so I am Sarah Stephenson-Hunter, that posh double barreled name, everyone should have one! And workwise, I work as the Staff Disability Advisor and Trans lead at the University of Oxford. And also - and this is where we connect - I also do some freelance consultancy and speaking on training on issues that intersect both disability and LGBT, as we'll probably get onto, in a moment, I myself, I'm disabled, and I also identify as a lesbian, and I am a trans woman. So I must definitely cross over those boundaries of disability and LGBT. And really, through my own journey and transition and experience, I realised that actually, we spend a lot of time focusing on these individual elements, whereas actually most of us are much more than one single identity. We're very much a whole group of identities. And I think it's important to look at the whole person. So that's what I do, that's how we we met on that panel for ParaPride, which was a great event. Thank you for your compliments and telling me I look very glamorous on that evening, Jennie.

Jennie Williams:

You did look glamourous, Sarah, I did not look glamorous at all I have to say, and my hair scraped back and then you turned up for full regalia. You know, you had your wonderful, full jewellery and everything. Yeah, okay, I should have made a little bit more of an effort!

Sarah Stephenson-Hunter:

Sure you were fine.

Jennie Williams:

I just really want to hone in on that comment actually. Because people seem to only concentrate on labels. And actually a lot of people thinking, I can only be one thing. One of the most common things that people write into around the love lounge problems, should I say is that I'm disabled, how could I possibly come out as well as being something else. And it's like it's seen as a problem. And then another problem for lots of people. We'll get onto that a little bit later. But as we're going to go through all your label Sarah. Can we start with the first label, which is your disability. So your're registered blind is that right?

Sarah Stephenson-Hunter:

That's correct.

Jennie Williams:

Okay. And can you just tell us a little bit more about that, please?

Sarah Stephenson-Hunter:

So I've been registered blind since 1990. Because what a lot of people don't realise is that even though you're registered blind, that doesn't mean you have no vision. It's single figures. It's anywhere between 3 to 6% of those people who are registered as blind have no vision at all. So the other 90 plus percent still have some vision. And for me, although I've been registered blind for many years now, it's very much been a journey. So my condition started actually - and this is what again surprises people - when I was diagnosed with a type of juvenile rheumatoid arthritis when I was two years old. And from that, I then start to develop issues with glaucoma and cataracts. I had cataract operations when I was seven, which I know a woman never talks about her age. But that was 40 years ago. And in those days, you were in hospital for three weeks per eye, you had to keep still, there was no such thing as lens implants. So really through my childhood, it was very much a case of using thick glasses and then different reading aids. And then crossing over into my teens, I then started to have issues with my corneas and glaucoma. So I had about 50 eye operations, I had a few knee operations. And it really led to the point where by my early 20s, I had very little residual vision. I was using a long cane to get around. I was reading material by speech to text software. And that really was how it carried on until, when was it 2012 when I had a close encounter with a cupboard door. And that meant that the remaining vision I had in my so called good eye. It all went, and so I've been completely blind since then.

Jennie Williams:

Just listening to that, you are the definition of the medical model. I mean, my heart breaks for you as a child. Going through operations. Can you remember the early days of you going through those operations?

Sarah Stephenson-Hunter:

I it's funny, actually, because you meet people who say they've never been in hospital. And I can never remember a time when I haven't been going to a hospital or staying in hospital. I do remember the cataract operations when I was seven, or eight, because as I say, you had to literally be in hospital for three weeks, and you couldn't really get out of bed. And it was just really tricky. I do remember going to - and again, this is something that complicates matters - So I'm originally from Northumberland, but actually most of my specialist surgeries in my latter years was down in Windsor. So I probably spent, well I had about around 200 hospital admissions. So my childhood, my adolescence was really taken up with me and my Mum, travelling, staying in hospital, having surgeries, having all sorts of scary things done, not quite knowing what was going on, and coping with that uncertainty about how long was the vision I had going to last? When will it change? What would it be like next and just trying to cope with it,

Jennie Williams:

It's interesting listening to you speak, because even the way that you're kind of telling your story is very matter of fact, because I imagine, you go on as a guest speaker, you talk about these things very often in your work. And I can hear you kind of chronologically 'this happened. And then this happened. And then this happened', because there's very little room left for emotion to a certain extent, because you have been through the mill over the years, since you were two years old, which is a huge thing. And it's slightly off topic, mentioning this, but I can imagine that's really difficult for your whole life. The whole emphasis has been on getting you to see, and concentrating on your on your sight.

Sarah Stephenson-Hunter:

Yeah, I think you mentioned earlier that whole medical model focus, I think, certainly, it being the sort of early 70s through to the mid 80s, the focus very much was on not me as a person, but me as a thing that had these eyes that weren't working. So it was all about operations and treatments and medication to try and either slow down any loss of vision, or to bring back any vision that they could possibly bring back. Now, don't get me wrong, that's good. That's helpful. I would have liked to have had more vision. But what it doesn't really help with, is that whole focus is on getting you to see, preserve what you can see. What it's not about, is making the most of what you've got and the life you've got. And not seeing it as this sort of deficit of I have no vision, but of saying, Okay, so my vision is pretty rubbish, that means I'm probably never going to be a Formula One driver or a jet fighter pilot. But that doesn't stop me doing all sorts of other things. And I think you're right, Jennie, I think sometimes if I sit back and listen to myself, listen to my story, it's almost like, was that really me? But but it was, and equally, I guess I got to a point where, it was difficult, and I did have some really dark times but I guess in life, you make a choice. And for me, that choice was ok, this is this is the hand I've been dealt. I have two choices. I can either sit around and mope about it. And I did have periods of that. Or you can equally say right, I'm going to try and seize life and do what I can and make the most of it. And that, certainly in my latter years, is the attitude I've taken.

Jennie Williams:

I mean, just to clarify for those of you who don't understand, we've mentioned now a couple of times, the medical model. A brief kind of summary really of the medical model versus a social model, is the medical model is what is wrong with you as a person and we want to fix you and give you all these operations, as Sarah has just described while growing up. The social model is more focused on Ok, this is your impairment. The impairment is what's wrong with you as a person, your body - what's not working with your body is the impairment, what disables you is your environment. So therefore, what can we change around us? And what can society change to help you access things around you? So that's why under the social model, people use disabled people, because our environment is disabling us. So you kind of very casually there mentioned Sarah, oh, and I just walked into a door. But can you actually explain what happened there because it's more than just walking into a door.

Sarah Stephenson-Hunter:

It was one fairly standard Monday morning, in July 2012. I was getting ready for work. And I went to get something out of a cupboard, which I had to bend down to, to access. And as I bent down, call it bad luck, call it whatever, I collided with the corner of the cupboard door. And I don't know if your listeners are squeamish, so I'll not go in to too much detail, but let's just say it was fairly instant. Puntured eyeball, straight off to eye casualty, and you don't get many sort of emergencies in eyes. But this was very much a case of 'right to get the on-call consultant, cancel all my surgery, we've got a thing to deal with here. And I knew pretty much that was it. They did talk a little bit about perhaps we can do something but I knew pretty quickly that the little vision I had at that point, that that was it. It was gone. I always knew I'd lose my vision at some point. I just didn't expect it to quite be like that on that Monday morning.

Jennie Williams:

How old were you then Sarah?

Sarah Stephenson-Hunter:

Oh, my gosh, that would have been 2012. I was just turning 40 that year.

Jennie Williams:

Wow. Well, I'm not normally that squeamish but even for me when you were telling me that my hand was in my mouth, you know, just thinking Oh, my goodness. So Wow. I mean, that's that's a way to lose the last bit of your vision, isn't it?

Sarah Stephenson-Hunter:

It is isn't it! mean, I seem to do with these things, not by half measures.

Jennie Williams:

Well, this is it, if you're going to do it, do it in a really dramatic way. I mean, we say say that light heartedly, but obviously that's a huge thing you must have really gone through. Even though you knew you were going to lose it at some point, it's a very dramatic way to lose the last bit of your sight, and you must have gone through a grieving process with that.

Sarah Stephenson-Hunter:

Yeah, as I said, I always knew it was going to happen but I guess up until that point it had been gradual. Something would happened, I'd lose a bit more than a bit more, but it was a gradual thing. I think it's true. I think obviously if your listeners are listening to this and thinking well if that was me with fullvision, suddenly to have that happen it would be a massive shock, and it was. I guess, if there was a good thing, it's that I've grown up with a level of visual impairment. And I knew of the support in the equipment and the services. But it still was an immense loss, as I said, that I didn't have a lot before then but it's different going from not having a lot, to not having anything at all. And it did rock my confidence and my sense of getting around, and just all of the stuff that you would expect. It just affects everything. And it did take a while. I mean, one of the interesting things is, probably for the first year, I was having these Phantom visions, and what I mean by that is, my brain was convincing me that the things I could see before, even in not a lot of detail, but things I could see before, like parts of the house, or my children, my brain was convincing me that I still had that little bit of vision, even though I had nothing, and that did freak me out for a while.

Jennie Williams:

How long did that last?

Sarah Stephenson-Hunter:

Probably 12 to 18 months.

Jennie Williams:

So even when you weren't in that room when you knew you couldn't be seeing it, you could envisage it.

Sarah Stephenson-Hunter:

I knew that I couldn't be seeing it. But it was vivid and real.

Jennie Williams:

So when this happened to you, you were still identifying as a man, is that correct?

Sarah Stephenson-Hunter:

That is correct. Yep.

Jennie Williams:

So from what I gather, quite a lot happened to you in quite a short amount of time. I heard you mentioned a tidal wave of things happened. So can you just explain to us what happened after you lost your sight?

Sarah Stephenson-Hunter:

Yeah. So I was assigned male at birth. And I spent a lot of my childhood, focusing on hospital visits and surgeries and eyes and knee surgery. But also, there was within me this uncertainty about who I was in terms of my gender identity. Now, bearing in mind, I grew up in the sort of early 70s to mid 80s, in a small town in Northumberland, when there was no real role models, or positiveness around being trans. In fact, I don't even think I heard the phrase transgender, probably until the 90s, although obviously trans people have existed forever. But I knew there was something different, but I guess instinctively, I knew it wasn't something I could talk about, or share with others. I went through my adulthood, I actually got married at 24, thinking that that would sort of cure me, if you like, and I was involved in the Christian church at that po nt, I that thought that would cu e me, that would help. But r ally, these feelings never went away. I spent various cycles of secret cross dressing, as it wo ld get called, but then bei g repulsed at that. But things ever never went away. And so obv ously, I had this issue with losing my vision. And then bout a year before that my dad ied of spinal and lung cancer. nd I described those two moment as my tidal wave moment. What I mean by that is, I felt l ke I'd been using all my energ in my life to run away fro this thing that kept chasing me down, this thing about uncertainty about my gender iden ity. And it got to a point wh re I decided, instead of using ll this energy to run away rom this wave of these feeli gs, actually, I'm just gonn stop. I'm going to let this ave crash over me. And I'm go ng to see what comes as a result And so for me, that was the sta t of a process, a very painful rocess of self discovery, self inspection, and getting to a point where in October 201, I had had my appointments at the gender identity cli ic, and I was diagnosed wi h gender dysphoria. And I egan the process of gender trans tion.

Jennie Williams:

That was a big wave, wasn't it?

Sarah Stephenson-Hunter:

It was a massive wave. But I think lots of us in life, whatever it might be, it doesn't have to be anything as extreme, if you like, as gender transition, it could be anything. I think a lot of us spend our lives running from things that actually, whilst they might be scary and terrifying, I think sometimes we just get to a point where we have to say, No, enough is enough, I've got to deal with this, whatever it is, and whatever comes from it.

Jennie Williams:

But it was a big wave but you didn't drown. And there's so much to talk about, and I appreciate that we're not going to cover all of this in one podcast, and I very much feel like there's going to be another podcast. So you made that decision, which is a huge decision in itself. Who was the first person that you spoke to about that?

Sarah Stephenson-Hunter:

Oh, that's a very good question. I think the first person I spoke to was probably a very, very good friend at work. And she was called Flick, Felicity. Now to explain, I at that point, was still married, I had three children, I was involved in the Christian church. And I just knew that I couldn't talk about these things that I had tried to before over the years, but that hadn't gone well. I also know that for lots of trans people, in particular, work is the place where they have to be very cagey and careful. And home is the place where they can be a bit freer. But for me, it was very different. I've always worked in a very female dominated environment. I've always had some very close friends at work who were women and Flick and another colleague, Sandra, I just got to know them quite well over the years. And I sort of sussed them out a little bit and then just just took the plunge and spoke to them and talked about how I was feeling. And thankfully, they didn't run away. I think they were a bit shocked. But not shocked at what I tell them in terms of horrified, but just they hadn't really expected it in some ways, although as lots of people, then started to find out were like, Oh, yeah, oh, that explains that. Or I can see it now.

Jennie Williams:

The reason I asked that question, I think, is because it's such a big thing for a lot of people. That first initial conversation and the reaction that you get, can really determine someone's journey, and how they then go about talking to people, when even taking it any any further than that. There are so many things that we can now cover that how your family, your children, the people around you, and we will talk about those things, like I said, maybe at a later date in another podcast. But for the sake of this podcast, really we talked about labels right at the beginning. How can you be a blind person AND a trans, lesbian woman? That's like 3 labels!

Sarah Stephenson-Hunter:

I don't know how you can be but I am! I mean, in essence, like we had this discussion earlier, Jennie, before the podcast, labels have their uses. But equally, labels are not that important. So I am just me. I am Sarah Stephenson-Hunter, this is who I am, I am a woman, I often say a woman with a trans history, I am a lesbian, I've always been attracted to women. And that hasn't changed. I think some people often get sexuality and gender identity mixed up. Just because you go through a gender transition doesn't suddenly mean you're going to start being attracted to the other sex. And for me, it's always been women, women are fabulous. Women are amazing. I'm sorry, guys, listening to this. But women are just brilliant. And I guess that's just who I am. But I also know that in the work that I do now, and I mentioned this earlier, this whole thing of your sexuality or gender identity or disability, your race, everything, we are just such much more complex beings than I think society and the media likes to portray and define us as. You know, I am blind, that's a fact, I am gay, I am trans. Some of those things at different times depending where I am, what I'm doing, are less of an issue than at other times and so really this is just me, this is just who I am. It did take a while to work some of these things out. But it's just all part of the rich tapestry of being me.

Jennie Williams:

You know, I think that so many people are going to listen to this Sarah. And, even if they're not, I mean, let's face it, most people won't be in your exact position.

Sarah Stephenson-Hunter:

No, probably not.

Jennie Williams:

But they might be going through some stuff. And I think that what a lot of people find is that because somebody has a disability, and then they are, and I'm using the word 'struggling', because lots of people find they're struggling with their sexuality as well. They feel that that's another burden that they have to put on their family members, especially young people who are maybe very reliant on their parents looking after them. And that's certainly a lot of the questions that we get through to our love lounge. How do I now tell my parents this. They've already had to deal with my disability, and it's really looking at it, as though these are problems. Actually, we're humans, and these are just complex matters. It's not just you are one thing or you're another. And I think that's a real issue when it comes to many disabled people actually being able to have the support that they need, when it comes to their sexual identity.

Sarah Stephenson-Hunter:

I completely agree. For me, my childhood, a lot of my life was taken up with issues around disability. And that probably fed into the fact that, I felt I couldn't really talk about these things to my parents. Now, don't get me wrong, my parents were wonderful parents. And since coming out, I had great support from my Mum, she was one of my fiercest allies and supporters. But obviously, growing up as a teenager, as a young person, you really feel like, gosh, I'm disabled, that's enough to deal with. And then if there's anything on top of that, and, to be fair, I I naively thought that because I've navigated the world of disability, and was fairly confident in that sphere, that perhaps that would help me when it came to navigating the world of LGBT equality and LGBT issues. And it's sort of did. But then, as I discovered, and that's what's led to me doing the work I do, even within the LGBT community and the disability community and vice versa, there is still not that understanding of these different elements. So I think you're right, Jennie, I think I can understand why people who listen to this might think, well, I'm disabled, that's enough. I can't talk about these issues. I get that, I understand that. But I think equally, if that is something you're struggling with, then it's really important that you're able to find that person, whether it be a friend, whether it be a support service, a colleague, another family member, that you're able to find that person that you you trust, and you can start to talk about it. Because I think, you know, the evidence is undeniable that the mental health impact of having a disability is huge. It's a lot of strain on us. And then if you put on top of that, another issue around sexual orientation, gender identity, that's just a whole other thing that, you know, it's no surprise that the incidences of severe mental health issues within the LGBT community are, again, higher than the standard population. So I think that just says to me that it's really important that you, wherever that might be, find the space where you can start to have that exploration. I was lucky, for me that was at work, and a few trusted friends. I know there are people that feel they haven't got anywhere to speak to. But you know, do reach out. And again, I think this is equally important and this is why I think it's great the work that Enhance the UK is doing, that we need to make sure that statutory services are aware of the fact that disabled people are also going to be LGBT. They may also be struggling with issues around that. And so I think that's why the work you're doing is fantastic. And the more we can show people that we're complex beings, then the better.

Jennie Williams:

Well, thank you for that brilliant explanation and for the compliment. Just to end this podcast, Sarah, people will want to know more about you. You're actually doing some of your own podcasts, aren't you? And you've got your own website. So could you share your information how people can get in contact with you if they want to?

Sarah Stephenson-Hunter:

Absolutely. So I have started my own podcast. It's called the Simply Equality podcast. And that seeks to foreground the lived experiences of people who are both disabled, and LGBT. That's available on all your usual podcast hosts, all the place where you get this podcast from you can search for Simpl Equality. I also have a website which is www.simplyequ lity.com You can find out mo e about me on there, my Tw tter handle and my Facebook, In tagram, all the usuals. Just d seek me out. And if you want o know more, get in touch and I'll be I'll be happy to help i I can.

Jennie Williams:

That's brilliant. I am sure you'll be getting people getting in touch with you. Well, I just want to say thank you so much again, I know that we could continue for at least another hour. We better stop it here. But thank you, Sarah. And I have no doubt you'll be coming back as a guest on our podcast again in the future, so we can go into this in more detail. So thank you once again. It's been absolutely brilliant talking to you.

Sarah Stephenson-Hunter:

Thank you, Jennie. It's been a rea real pleasure. Thank you.

Audio recording:

Thanks for listening. For more information or to have a chat with us. Please visit www.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.