A few weeks ago, we sat down with Sandie Roberts to talk about her experience of the wheelchair transforming from a symbol of failure, to a tool for empowerment, and how she integrates it into fashion and self-expression.
After becoming suddenly disabled in 2019, and struggling to come to terms as her life was turned upside down, Sandie found joy through acceptance and recognising that disability is not a bad word.
She believes that while life with a disability isn’t without its challenges, the world needs to change to accommodate the needs of disabled people to enable them to fully participate in society, rather than disregarding a whole sector of humanity as somehow “less than” and works hard to advocate for the disabled community.
Feeling as though she lost her sense of identity, she fought her way back to first accepting and then loving who she is now through self-development and therapy, creating a stronger version of herself out of the broken pieces of her life. She now champions the importance of mental health and refutes the shame culture around seeking help and is on a mission to encourage and empower others to live boldly.
She has featured as a body confidence expert on ITV’s This Morning and spoken on BBC radio as a disability and body confidence advocate a number of times and has modeled on television and in London Fashion Week. She has also been nominated as a Positive Role Model at this year’s National Diversity Awards.
She says -
“Humans are incredible, we are imperfect. We are strong. We are powerful. And we can change the world.”
Benedict: So, where are you right now?
Sandie: I am in the Cotswolds. In the UK.
Benedict: Where are the Cotswolds?
Sandie: The Cotswolds are in the Midwest of the UK. So, very close to Wales. And I recently moved to an adapted bungalow, like a ranch style house, so everything's on one floor. It has really wide doorways so my wheelchair fits through really easily, and I don't have to kind of squeeze through, and big bathrooms and things. Before that I was living in a townhouse that was three stories. So I had lots and lots of stairs, which is not ideal when you're in a wheelchair. I love it here.
Benedict: That's fantastic. Do you have a garden?
Sandie: We do. Oh, and the bedroom has these big French doors that open out into this garden and there's trees, and you can hear the birds singing and it's like being on holiday all the time. It's just heaven. It really is. Where we lived in town before, we had a kind of metal pole and one bird would come every year and I'd just listened to this one bird sing every year. And now we have a whole tree full of birds and it's just glorious, so I love it.
Benedict: That's so nice. So are you in the country then? Or are you still in town?
Sandie: No, we are right on the edge of the countryside. So, literally a two minute drive and you're right in all the country lanes and fields and stuff like that. So yeah, it's really nice.
Benedict: That sounds lovely. And what's the closest town?
Sandie: Cirencester is the biggest town, and we are between Cirencester and another town called Swindon. And Swindon's very industrial and Cirencester’s very old. And Cirencestor used to be the Roman capital for a while.
Benedict: Roman capital of England?
Sandie: Yeah, there's a church there that dates back to 1117CE. It's very old.
Benedict: Wow. Well, that sounds like a lovely place to be.
Sandie: It really is. I feel very lucky. I've lived in a few places in the world, but I am really happy here. It is beautiful. I do think that there's a lot to be said for stopping and appreciating the small things like hearing the wind rustling in the leaves on that tree and I do make sure I stop and take time to do that every day because I lived for so long in this other house and we didn't have any trees and I feel a great affinity with trees. I think they bring life to me specifically, and costs nothing, does it? To listen to the wind in the trees?
Benedict: No, it doesn't cost anything. And I love what you said.
Sandie: I think we can look for big things to save us a lot of the time when actually it can be the small things that are the things that hold us up. When you look, you don't need a big thing to come along and be the thing that keeps you going. It's all those tiny little things that actually make life. And I've always loved trees and just think, the stories that they could tell if they could talk! Especially the ones that have been there for hundreds of years - we have a lot of trees that have been there for hundreds of years in this country. I feel quite sad when they're just cut down because I know someone wants to build something and I think, well, they've been there for so long ... build around them, you know?
For a long time, I bottled up lots of emotions and I'd felt like there were these rocks inside of my chest where I was swallowing down these painful emotions. And I felt it was too difficult for me to process them or let them exist in any way other than to just hold them like this calcific hardness inside of my chest. And I know you can't die from emotion, but felt like if I was to let it out, I would die from the extreme pain of them. Then there came a time in me processing these emotions where I wanted to go somewhere safe, to allow this process of letting them out.
And the only place I could think of was to go to the trees in the woods. So, I took myself in my wheelchair to a private area, which was just surrounded by trees. . . And I can remember just letting it out. It went on for about 45 minutes - this constant stream. I was just crying and there was like a singing in the air: it was the trees just buzzing with the energy of taking this beautiful pain away from me. Thenn after about 45 minutes, I could breathe and I was open, whereas before I was closed. I suddenly had this openness about me.
Since that day, I have never felt closed again. It was just a magical transformative experience.
Benedict: That is truly incredible. Thank you for sharing that. Does that pain tie into when you first became a wheelchair user, or was it much older?
Sandie: The root of my pain started very early childhood. So I learned to swallow my pain from a very early age and not process it properly, but to hide it and mask it. Not for bad reasons necessarily, but to protect people. However, it becomes a problem when that protection hurts you and you don't learn to process things properly. And then shit happens to you that you really do need to talk to people about, but, because you don't know how to, you internalize it and you hide it, and then more shit happens and more.
I think that when you don't have a structure or a family unit where you feel that you can deal with the stuff that happens to you, you have a maladaptive way of processing those things. And that doesn't mean to say, you know, I didn't have people that love me. It's just that I didn't feel I could talk to those people about those things.
I was bullied really badly at school to the point where there were rival gangs involved, and my life was threatened. So, to hide away from that gang, another rival gang hid me in a drug house.
My mom thought I was going to school and I was actually hiding. I wasn't doing drugs. I was terrified. I was a very good student; very good pupil; and so to me, this was absolutely horrendous. And the things I saw and was exposed to while I was there is, you know, you could make a movie out of that.
When I was 15, I hurt my back, and that was my first experience of being in a wheelchair. I was so bad at that point that they wouldn't let me be in a wheelchair for a while because it was too damaging for my back. I was just stuck in a room and nobody came to see me. I saw my mom and my boyfriend at the time. And one friend would come and see me very occasionally for periods of weeks on end. And that's not healthy for anyone when you're that age. Things just play on your mind and you just go a bit funny in your head. And I did go a bit funny in the head. That's why my mom then got me a wheelchair, so I could get out and see the real world. And all kinds of things came back to me. I was like, “this is what the real world is like?” you know? That was my first experience of really bad mental health.
Benedict: You and I discussed prior to today the Sue Austin TED Talk, and her underwater wheelchair, which she has titled “Portal” because it really makes her feel like she has transcended by using it. In that talk, she talks about remembering the first time that she used a wheelchair as a result of chronic illness and the tremendous freedom it brought her, and that it was like, “having an enormous new toy” and she could “whiz around and feel the wind in her face again.” But then people's reaction to her changed. And people's assumptions about her “took over with words like fear and limitation and pity.” And she internalized those things, and started to see herself from other people's perspective. But before all that, like, just with the freedom Sue Austin talks about, and the enormous new toy, did you experience any of that after the period of time of being held up for weeks at a time with just a couple of people coming to see you, and finally getting out into the world?
Sandie: Well, when I was 15, it was really interesting because, at first of all, I was so relieved to be mobile, but I didn't attribute it to the wheelchair. In fact, I was really resentful that I was in it. I think I stayed that way for decades. In fact, I remember my boyfriend at the time pushing me in the wheelchair and we were down on the coast and I saw a couple walking along and they were holding hands. And it was that moment when I looked at them and I thought, “well, if I'm in a wheelchair and he's pushing me, I can't hold his hand.” And I remember thinking, “well, that means I can never hold someone's hand if I'm in a wheelchair” and being really angry about the limitation that this wheelchair was giving me and it making me think, “I don't wanna be in this wheelchair” and being so resentful about it.
After that, I had procedures at the hospital and stuff and, and I got back to walking. But from that point on, doctors were saying to me constantly, you need to get used to the idea that you will be in a wheelchair by the time you are 30, 40, whatever. And I remember my absolute determination to prove them wrong. You know? This is not gonna happen to me. I will not be in a wheelchair. I will not, I will not fail. I will not let that happen to me. My attitude was so tied up in ableist beliefs of the fact that this wheelchair would be a failure in me somehow. Despite the fact that I had this injury when I was 15 and I had ongoing spinal issues that caused me pain and daily problems, somehow I thought it would be a failure to give in and “end up” - these terms that I was being told, “end up in a wheelchair” - would just be the worst thing possible when actually daily life was horrendous. I was in so much pain, so many times on so much medication. I was like a zombie.
Benedict: And all when you were 15.
Sandie: Yeah. Started when I was 15. Yeah.
Benedict: How did that change over time?
Sandie: Do you know, it did not change until I collapsed in 2019. Up until that point, I was still struggling. In fact, in the run up to that, I was using a walking stick. I was so adamant that I didn't even wanna use that: I was going out without it and getting trapped because I couldn't walk and having to sit on the side of the road cause I couldn't move. And my daughter's saying, “you need to use your walking stick.” And me saying, “I will not use it,” and hating the thought of being seen as a failure and having failed at life somehow. Then when I collapsed, I had no choice. I couldn't walk, I couldn't do anything. And I think that's what forced it on me.
But something else happened . . . because I had no choice, I still could have sat in that wheelchair and felt resentful . . . but I didn't. I sat in that wheelchair and I felt freedom because what happened was I had ended up just this person on the floor. Absolutely, literally a crumpled mess on the floor, completely thinking that there was no point in any existence. I have had a battle after battle after battle to try and survive, to try and make this life worth living so much. Shit has been dumped on me where I've had to try and say, “no, I will come out of this. I will survive this. I will not let this beat me.” And now here I am, and I don't know how to survive it. I don't know how to do it. And I can remember thinking there's nothing left of me. I'm feeling so empty, like this vacuum of, of a human being, thinking, “where am I gonna get the energy left to even carry on breathing? What point, what value do I bring to my children, to my husband, to my family, to anyone that comes in contact with me; what is the point of this existence that I've got here?” It was a terrible, terrible place to be. And I stayed in that place for a while.
And then it just occurred to me that I could either stay there, or I could find a reason because I've been blessed with this life. I am still breathing. I have been blessed with continued life force and I refused to waste that. So it was my job to find a purpose, to put that life force to good use. And I didn't know what it was gonna be. I didn't know what it was gonna be for, but I knew that it wasn't gonna be on the floor of that bedroom. And so I literally crawled back up onto my bed and I thought, just write something, just create something. So I started to write and find a way to just make a decision to love myself as I was without changing anything. It was just a decision at that point because I didn't love myself. I didn't see the point in myself. I didn't see why anyone would love me at all.
The wheelchair became something to facilitate me living this life that I then decided I was going to do. It was very much a case of making a decision that then the rest of it would catch up to. I knew on some level, if I made a commitment, that at some point stuff would come in and fill the gaps. So that's what I did. And that's what actually happened.
At the time, I was using what you'd call an off-the-shelf wheelchair, one you just go and buy in a mobility shop; it wasn't made for me or anything. It was just an ordinary, cheap wheelchair, and it was okay. It was fine. However, I wanted one that would make me feel more mobile and didn't hurt my shoulders and stuff. So I bought one off of eBay. It was a secondhand thing, but it was a made-to-measure, or active wheelchair. It wasn't made to measure me, but I'd measured myself and got one as close as possible. It was still quite a lot of money - about 300 pounds I spent on it - and I sat in it and instead of me sitting in a chair, it felt like the chair had become an extension of me and I just started crying. And that was a real shift because I just started spinning about the living room and kitchen. And I just thought, “This is it. This is what it's about. Now I can feel like I can do what I need to do, and the chair's not gonna get in the way.”
The chair is incidental now. It's become a tool for me to get to where I need to go, get to and do the things I need to do, and now I can focus on what it is I'm meant to be doing. And that was the change. Because, with that whole point of being crumpled on the floor, I need a chair to enable me to get on with my life. And that chair became this freedom vehicle. That was the shift. It's never been a thing for me to want to get out of because without it, I wouldn't be able to do any of the things I do now.
Benedict: And this moment that you just described happened in 2019?
Benedict: It sounds like it was really a decision to shift your perspective and to start embracing your life as it was, and that led to this “If you build it, they will come” view of your own life. Those smaller pieces will fill in if you just started doing it, and you started writing, and you started getting creative and expressing yourself. The pieces required to love yourself would start to fill in as you went on.
Benedict: I was looking at a couple of your blog posts, and there were two that really stood out to me: Let's Get Uncomfortable and also Performative Love in the Body Confidence Arena. There's a thread running through a bunch of your work, which is this thread of self love and self acceptance. Why is that so important to you? And, part of what you were just speaking about answers the question. But, beyond that, why do you feel it's so important that we as humans share about that, and that you share about that, and that you write about that, and that you encourage that?
Sandie: Because I didn't used to love myself. I didn't used to, and it's still a daily conscious decision to love myself. Sometimes I decide that I'm gonna love myself, even when I don't feel it. I spent a long time not loving myself. I think it's fundamentally essential that we do love ourselves before we think about loving anyone else. And I don't think it's a vanity. I don't think it's something we should moderate. I don't think there are limits to how much we love ourselves. I don't think it should be conditional. I think we should celebrate everything that we do. We don't champion ourselves enough, especially not in this country. We're very [in the UK - imitating a posh accent], “Oh, well, I don't think we should shout about our successes because that's very arrogant,” and I don't think it is arrogant.
There's a lot of damage that can be done to our self-esteem. I have experienced feeling suicidal in my life so, I think for me, it's hugely important that we love ourselves, that we teach our younger generations that it's important, that it's okay to love ourselves. So, I champion it because women - andI'd agree that men feel it, but I don't know about men, so I can only talk about my lived experience - but from women's perspective, we try and make ourselves what is supposed to be palatable to society. We mold ourselves into what is supposed to be this shape, or that shape, and this personality type. All the time, we're trying to become what we're supposed to be by someone else's standards. And when we don't measure up, because we cannot possibly measure up. We criticize ourselves for it all the time.
And you know, I did write about it. How hard is it? When I talk about saying “I love you” to yourself in your own reflection in the mirror, people get uncomfortable. You can see them squirming in their chairs and it's so sad that we feel that way.
Benedict: I squirmed a bit when I read it. And then you wrote, “Are you squirming a bit?” And I was like, “Yes, I am!” And then I carried on reading.
Benedict: Where did you discover this idea of deep soul gazing in the mirror and loving yourself in the mirror?
Sandie: I've heard of it from quite a few different people. I don't remember the first time I heard it . . .about five years ago, I guess. I haven't been doing it for five years. It's definitely been the last couple of years that I've been experimenting. But it is not easy. The first time I couldn't even meet my own eyes. It's just like, “oh, that's weird.” It made me feel really uncomfortable.
Benedict: It's quite an old idea, this idea that you can't love others until you love yourself.
Sandie: I don't agree with it because I spent my whole life not loving myself, but loving my children.
Benedict: Interesting. Okay. So you don't agree with that? You think you can love others without loving yourself.
Sandie: Yeah. A hundred percent. I don't think it's necessarily the way that it should be. Um, but I think it's definitely possible for you to not love yourself. I think many people will not love themselves, but can channel huge amounts of love into somebody else.
Benedict: Yeah. So, is there a kernel of truth in it? And if so, what does it mean? Or is there not? You might just think it's completely wrong, but what do you think it's talking about when we hear that saying that you can't love others until you love yourself? Because you said something just now about it not, perhaps, being the way it should be. Is it possible that our love for others is maybe tainted if we don't love ourselves fully?
Sandie: I think that maybe we are holding back slightly. If we are not loving ourselves, we are holding back from how much we can love somebody else. And when we love ourselves, we are capable of loving the other person even more.
Benedict: Authenticity is a word that comes to mind for me. Sort of like an ability to share yourself authentically and genuinely and fully then allows the other person, perhaps, to do the same.
Sandie: I think relationship love is a different kind of thing, as compared to parent-child love. In a relationship, I think there's a different dynamic because, as a parent, you can channel your entire soul into a child because there's no expectation to get anything back. From my experience, I didn't feel that I needed them to love me. I just needed to love them. Whereas in a relationship, I think there's definitely a different dynamic: if I don't love myself, then how am I expecting them to love me? And isn't that putting some responsibility on them to fulfill a need that should come from me? So I think there's a different dynamic there. For sure, I think it's healthier if we love ourselves. I just think it's possible to love somebody else if we don't love ourselves.
Benedict: Yeah. I totally relate to that. And especially what you said about children because, for those of us that have children, it's our job to love our children and not be loved back by them in a way. Perhaps it's weird to use the word “job”, but I remember having that realization myself when my daughter was very young. Regardless of the difficulties of the family dynamics that come about in many modern families and that then surround our children and can lead to complicated relationships, it's just our job to love our children and not worry about being loved by them. And it certainly puts an awful lot of pressure on them if we are requiring them to love us back, because that exists in the world too.
So, bringing it around to fashion a little bit, does fashion help you love yourself more? Or do you find yourself more willing to express yourself through fashion as a result of loving yourself more? Or both?
Sandie: Both. For sure. It plays a huge part in who I am. I express myself through the clothes that I wear and clothes help me express myself. If I'm feeling like I need cheering up, I will choose clothes to help me do that. If I'm feeling like I need to present myself in a certain way, I'll use clothes to do that. And equally they can take away from me.
For example, I identify as queer and before I had my hair cut - I had quite long hair - I was presenting as really feminine and I couldn't wear dresses. Well, I could wear them, and I did wear them, but nobody knew that it was making me feel really icky; like I was wearing someone else's skin, and it got to the point where I just literally couldn't go out in them. I had to go and get changed. Now I wear dresses because I've got this really shaved hair and I can dress with feminine stuff, but I still enjoy really playing with masculine vibes and stuff. And I really, really enjoy this whole playing around with what does that say?
It's really interesting that it took me a long time. I mean, I didn't come out until I was 43 to my family. I didn't come out for a long time. It was kind of like a secret side to me that only a certain few people knew about. And I remember thinking, “okay, now I get to wear dungaree and all these strange things.” That was the first thing that a lot of people said to me, but I remember thinking, “Great. Now I can play with fashion and I can actually express myself,” because people expected me to go out in really dresses all the time. But I knew that when I went out in a jacket and trousers, I felt really comfortable and really confident.
I think that fashion in particular, when we use it correctly, has so much power to empower us as the wearer. It's a tool to communicate to the world around us that this is who I am. This is how I want you to perceive me. Because, even when we're saying, “I don't care what anyone thinks of me,” we're still communicating. When someone says, “I just swear what I like, and I don't care what anyone thinks,” we are still communicating that message to them. Like we're still saying something. So it is a hugely powerful tool. And I really enjoy playing with it. I enjoy playing with color, whether that's the lack of it or the use of it, and the styling of it.
What I get frustrated about is the fact that there's not enough as a wheelchair user. There's not enough variety to enable me to look the way I want to look sitting down. I like lines. You know? I like the lines to be there. And we get that when you're stood up. Obviously people can say, “I love the line of this jacket. I love the line of this skirt and everything.” Well, a lot of the time, when we are sitting down, we just look like a sack of potatoes and that frustrates me a lot. So, I am on a bit of a mission with that to change that if I can and help people who also happen to be sitting down, for whatever reason, to feel empowered with the clothes that they wear. Because, when I started to find myself again, after this whole crumpled-on-the-floor-mess business, I didn't know how to present myself because I was wearing sweatpants and oversized t-shirts all the time. I still do wear that stuff because, you know, comfort -
Benedict: Nothing wrong with sweatpants and oversized t-shirts.
Sandie: No, but not all the time. And I was just like, “what about this fiery Phoenix of a person, this human being that is on fire, that I'm harnessing this volcano . . . that volcano doesn't wear oversized t-shirts!” This human being wants to scream and shout and say, “Look! Here I am! Take notice of me, world!” I refuse to be quiet anymore. And I don't wanna be wearing that t-shirt for it, so therefore, what am I gonna wear?
And there was nothing.
There was nothing for me to take inspiration from. There's nothing in magazines. There was nothing on TV for me to say, “This is what you should be doing. This is how you can dress.” And that's still the situation now. It is very frustrating, because I'm not alone in the way I feel.
Everybody that's sitting down at some point will want to feel that they have somewhere to go for inspiration. But - I’ll get off my high horse a little bit - I do think that it's fun at the end of the day. Fashion is fun. We can play with it. We can change our minds. We can put something on, we can take it off. You know - energy spoons allowing - we can be one thing one day, we can be something completely different the next day, just because of the things we've put on the outside of our body. And I think that's fantastic. I think that's brilliant.
Benedict: Yeah. It's such a fine line. Isn't it? Between choosing people to perceive you in a way that is a true expression of yourself in that moment, because you were in a state of play, or choosing to wear something that is actually a representation of what you think you should look like for other people to love you or like you, because you’re not actually coming from a place of loving yourself. And I really struggle with this myself. Absolutely. I often find myself putting on clothes that I think I should wear for an event, or should wear for this particular person I'm going to be with in order for them to like me or find me attractive, or whatever it is, as opposed to the fun and freedom I feel when I choose to wear something just because I think it's gonna be fun, and because it is inherently an expression of my own creativity at that moment.
Touching on what you said about loving the lines of clothes, and the lack of options out there for wheelchair users, this is exactly what our founder, Izzy Camilleri set out to do. That was the light bulb that went off for her after five years of designing custom clothing for wheelchair users. She had decided that there was this huge gap in the market and that she really wanted to create a collection for adults that would be wardrobe basics. Initially, she couldn't really figure out how to do it. Then, while walking home one day, she had this realization: she is designing for the seated body! Therefore the lines are different! Everything else is designed for a standing frame, which is very up and down. From there she realized that she had to change all of these traditional patterns so that the lines follow the seated body. That was how IZ Adaptive was born years ago, from answering that exact question. How do we cut these garments so that they follow the line of a seated person? As a result, in four weeks she had created the initial collection, made it, photographed it and put a website up.
Benedict: Which is amazing! But it also goes to show you that it's not a difficult problem to tackle. The difficult problem to tackle is the many, many different body types for wheelchair users. But then that's the difficult problem to tackle in fashion, period. There are many different body types that don't all just fit within this middle point of the bell curve.
So how do we integrate the wheelchair itself into that? There's a fabulous company called Izzy's Wheels. You may have heard of, and we love them because they make these really colorful wheelchair covers (and both of our Founder’s names are Izzy). Have you seen them?
Sandie: Ireland. Yes, yes, yes.
Benedict: They’re so colorful. And you know, it's just this fabulous extension of fashion and self expression. Do you have any ideas about that or how do you see the wheelchair fitting into self expression and fashion?
Sandie: So this is really interesting because my wheelchair is all black. I picked that on purpose because the last wheelchair I had was Kermit the Frog-green, and it had Miss Piggy pink wheel rims, and it was so bright, and everybody was just constantly commenting on my chair all the time, but it clashed with my outfits. And I didn't like that. I had no control over the color of the chair and it bothered me. So, I've gone for just all black on this wheelchair so that I can control how I look.
Sandie: I like either a completely steel colored wheelchair or this all black version.
Sandie: If someone said, “You can only go with one style forever,” I think I'd go with minimal and sleek.
Sandie: The wheelchair design hasn't changed in hundreds of years, has it? Or a hundred years, or however long it's been going for . . . it's the same basic design of wheelchair, ultimately, that we've had since year dot. But, I think what frustrates me the most is the way that things get trapped in the wheels. I can't wear big skirts very easily. They'll get trapped in them. I still do. I still get my dresses dirty, and there isn't any way around it as such, but it is very frustrating that clothes aren't cut for us to look like we have shape when we are sat down. So for me, the wheelchair needs to not melt into the background as such, but I don't want it to be the star player of what I'm wearing either.
Benedict: It sounds like the sleek lines and having a clean, neutral background, essentially, whether it's black or silver, or metallic, you're creating a nice background, like painting a canvas. Often painters will paint a single color in the background, whatever's going to make the backdrop before the painting, and then everything else in the front can really stand out. Going back to Izzy's Wheels, the thing that's really nice about their product is that you can add these covers that will color, not clash, but actually accent your outfit.
Sandie: And and they come off, too don't they?
Benedict: Yes. So you could a few different sets that will work with a variety of outfits.
Sandie: So, like jewelry - that's like a jewelry item for your chair.
Benedict: Yes! Accessorizing your chair, so that it becomes a piece of your expression. Love that. What do you think the world would look like if everyone deeply loved themselves?
Sandie: Well, I don't think there would be war. I don't think there would be famines. I think that most of the world's problems would be over. I think the world would be a very different place.