"Talking about disability means talking about it completely." - Conversation with Sandrine Graneau.

Sandrine underwent a quadruple amputation in 2019 as a result of toxic shock, a rare and often overlooked female illness triggered by the use of menstrual protection. Co-author of the book "Choc Toxique" published by Flammarion in 2021,  Sandrine is actively involved in raising awareness of illness and disability. She shares with us her story, her vision of how disability is perceived in our society, and stresses the importance of educating people to empathy and benevolence.

U-Exist: Hello Sandrine. First of all, could you introduce yourself in a few words?

Sandrine Graneau: My name is Sandrine, I'm 40 years old, married with three children. For many years, I worked as a nurse. Following toxic shock in 2019, I had to have both my legs and part of my fingers amputated. I currently live with two tibial prostheses.

UE: How did you approach the process of customizing your prostheses? Did this manifest itself early on or later in your career?

SG: Initially, personalization was not a priority, because during rehabilitation, these aspects are not generally addressed. Initially, we lacked essential information on the subject. It was only when my prosthetist took me outside the rehabilitation center that he introduced me to this dimension. He informed me about customization options, including special fabrics, and offered me these choices as soon as I was able to get my first definitive prosthesis.

 

"It's hyper-important for me to have a prosthesis that I like aesthetically."

 

EU: You mentioned that you didn't have all the information at the outset. What does that mean in concrete terms?

SG: At first, we don't quite understand what our journey will be as amputees with the fitting. It's not something that can be done instantly; there are many stages, several trials of prostheses, and we have to wait until we have a stable stump, among other things. We often hear about the so-called "definitive" prosthesis, which in reality is not definitive at all. We imagine things, but the process takes much longer than expected. I spent too much time with plastic trial prostheses, constantly being adjusted. The person in charge of me didn't understand my needs, and said "you'll get a skin-like coating anyway". But for me, it was important to have a prosthesis that I liked aesthetically.

UE: That's when you realized that you weren't in tune with this device...

SG: Yes, exactly. It was simply because I had this desire, it was a bit like a little present for me, to be able to choose my decor and my socket color. I thought I was in danger of missing out, almost like a child who had forgotten to give a present. 

UE: Is it an important moment for you, the moment when you discover your new prosthesis?

SG: Yes, it's very important. It's also an anxious moment, because you wonder whether the prosthesis will fit properly after all the steps that have gone before. I really appreciate the moment when people ask me: "So, have you chosen a pattern? So, have you chosen a pattern? What type of Lycra would you like? ". It's like shopping, with the excitement of choosing something. And at the same time, you can't go wrong, because the prosthesis will be worn for a long time.

UE: You say that the moment of discovering your prosthesis can also be a source of anxiety?

SG: Yes, because adjustments are often not perfect, and we can also worry about how smoothly the transport will go, or dread the transition from plastic to carbon prosthesis, hoping that no defects have been overlooked. As a bilateral amputee, every detail has to be accurate to the millimeter, which makes fitting particularly delicate. Redoing a prosthesis is not a simple process, and I'm well aware that it will take several months to find the right setting, ensure a perfectly adapted socket and obtain optimal adjustments. It's a complex process that involves considerable fatigue and stress.

 

"I take anything that can bring a little positivity, that can give a light, joyful touch (...)".

 

UE: Does it help to relieve the stress of seeing that your prosthesis is beautiful?

SG: Yes, absolutely. Aesthetics are very important. I don't know if it's more important for women than for men, but as far as I'm concerned, as a woman, walking with two tubes leads to difficulties linked to my personal image and the way I dress, because I feel completely limited in my choices. It's very complicated to accept the material. From what I also hear in the prosthetist's office, for many women, this aesthetic dimension is difficult. After four years of wearing braces, I still haven't got used to it, and I don't think I ever will. It's a fact of life. However, in reality, I take anything that can bring a bit of positivity, that can give a light, cheerful touch, and that is a bit more like me. I seize every positive opportunity that comes my way.

EU : You're still hiding your prostheses?

SG: Yes. I don't like myself with a visible prosthesis. It's not me, it's not my body, it's not how I want to see myself. I'm not embarrassed in front of my family, my children, it's not a problem, and if I have a problem, I can pull up my trouser leg and let my prosthesis show, even in a public place, if it really doesn't fit. But I find that it attracts attention, and like everyone else, I have an ego, and I may want to draw attention to myself, but for reasons other than my disability and my prosthesis. I don't want to exist through that. The aesthetic dimension and the impact on image are difficult to manage. It's a mourning process, some people go through it quickly, others more slowly, and some maybe never. As far as I'm concerned, I don't want to raise questions or be constantly questioned about my disability. So the less I show, the better off I am.

 

"The personalization of my prosthesis is the only aspect I can choose."

 

UE: So it's strictly a personal pleasure for you to have your own personalized prosthesis?

SG: Absolutely. It's my prosthesis, and in my opinion there's nothing more personal than that. This aesthetic is the only thing I can choose. Disability and illness are imposed realities, unavoidable constraints. Personalizing my prosthesis is really important. I didn't think it would be so important, but as I've been experimenting, I've realized just how crucial it is. When I come home with my new prosthesis, I'm so proud, it's like unwrapping a present, I show it to my children and my husband. I have to put up with a lot from a disability point of view, from a medical point of view... and the personalization of my prosthesis is the only aspect I can choose.

 

"I associate my prostheses with memories. They form a kind of bond (...) they really belong to me, it's extremely personal."

EU: Would you say you're proud of it, as many people are?

SG: No, I don't particularly feel the pride that others do. I do, however, associate my prostheses with memories. Over the last four years, I've had several, and for example, I know I'll never choose a purple prosthesis again. My prostheses remind me of a state of mind I may have been in, or of the challenges I've faced. The last one I had represents the moment when I began to gain independence, so I chose patterns that evoked that period. It's strange, but there's a kind of bond that forms, a positive or negative relationship. My prostheses have a sheath that covers the socket, so only I can see them. They really belong to me, it's extremely personal. It's almost as intimate as lingerie, at least that's how I see it. 

 

"I want people to understand what disability really is, to see us as we are, and to break the silences."

 

UE: Why did you want to tell your story?

SG: So this is a bit like the new "post-amputation" Sandrine. As much as it's something quite intimate, I love talking and sharing about disability. I've set up an association, I'm working hard to raise awareness of disability, and I'm involved in a number of projects along these lines, because I also want people to understand what disability really is, to see us as we really are, and to break the silences. My amputations are linked to a rare disease in women: toxic shock, a complex and taboo reality. As a result, I began to speak out frequently. Every opportunity to make progress in the field of health and disability is an opportunity I seize. Whenever I'm asked, my response is always positive.

 

"Toxic shock is an extremely taboo disease in France."

 

EU: What do you do to talk about these issues?

SG: The association I set up is a way of discussing this disease, or disability in general. But I'm rarely approached because, once again, toxic shock is an extremely taboo disease. If one day I manage to talk about it in a secondary school, we'll be celebrating the victory. France has a lot of work to do in this area. 

Two months ago, however, I was asked by a school for nurses to speak about disability and the role of the carer in caring for disabled people. I've also co-written a book with a journalist. This allows me to talk about menstrual toxic shock, which I also link to disability, because the illness marked a few weeks of my life, while the disability will mark the rest. I've been asked to take part in my commune's accessibility commission, to work on access to public places, public spaces, sidewalks... all areas that need improvement. I get involved in various small projects, using my history and relative fame to raise awareness of disability in a different way and bring about change. You can be representative of many realities, but everyone is uniqueI'm trying in my small way to make a difference.

UE: Can you tell us about your book?

SG: Yes, it's published by Flammarion and is called "Choc Toxique". I co-wrote it with journalist Claudine Colozzi. The book is divided into two parts: the first is my personal account of my experience with the disease, the loss of my limbs, the start of braces, rehabilitation and the upheavals it caused in my life. At the same time, the journalist has investigated the pathology, the signs of the disease, and the regulations governing menstrual hygiene products, for example. 

 

 

UE: You've certainly made a lot of discoveries?

SG: Indeed, one of the things I discovered was that the advice that I could keep a tampon or menstrual cup on for 12 hours was actually strongly inadvisable! By using my experience to prevent other women from having both their legs amputated, I've found a way of helping others, which, to be honest, allows me to escape from my illness, my disability, my difficulties and my complicated medical journey. There's an aspect of reciprocity, it's like a form of therapy for me.

EU: Today, would it be fair to say that your main activity is awareness-raising?

SG: Yes, because I can no longer work because of my disability. However, with three children to look after, it already takes up a lot of my time. Walking 500 metres a day, even if it's not a considerable distance, takes a lot out of me, especially as I have to manage my home, my children and my many medical consultations. That's more than enough. 

I'm also involved in a number of projects, such as taking part in a photo exhibition on disability that we're organizing with my local council, and for which you are the patron. In particular, I'm one of the photo models, a challenge I set myself, just like the other challenges I take up in my life. In short, my life is a series of challenges!

All these activities contribute to making my life less monotonous, and I'm constantly looking for small initiatives to highlight people with disabilities in a positive way.

 

"I sometimes find it difficult this 'superhero' representation that many seek (...) it's also important to be aware of our vulnerabilities."

 

UE: What are the main messages you wish to convey?

SG: Basically, I don't want people with disabilities to be seen as different individuals. On the one hand, it's essential for us to be included in the same way as everyone else, but on the other hand, I'm beginning to have reservations about the idea that we're "warriors" capable of anything. This feeling, which many people tend to convey, can lead to the loss of necessary support. Sometimes, the media showcase exceptional athletes with sophisticated prostheses, creating a misleading image that we live like everyone else. No, the reality is that my life is impacted, and sometimes a "little boo-boo" on my leg leaves me bedridden. I sometimes find it hard to live up to the "superhero" image that many people with disabilities seek, because while we all want to shine a little, it's also important to be aware of our vulnerabilities.

What I really want is for us to learn to live together, for society to be more understanding and empathetic towards people with disabilities. I'd like us to move away from a look of fear, disgust or indifference to one that's empathetic and fair. We're often infantilized too, which is unbearable. I try to explain to people that cognitively, everything's fine, even if I can't walk much, I can understand. My battle is to put an end to the different perceptions and to be fair in our dealings. We need to educate people about difference and about living together.

 

"Some very virulent comments testify to a real lack of disability education."

EU: Do you think France still has a long way to go?

SG: Absolutely, in many respects. Just look at the state of our roads, our sidewalks, our accesses... That pretty much sums up the situation - we don't seem to care at all. I live in a small commune where a lot of work is being done on this subject. A few months ago, during a discussion with a town-planning architect about paving, his proposal was cobblestones. By 2023, cobblestones! So I asked him if he'd ever tried pushing a wheelchair over cobblestones, or walking with a cane, and retorted that he was therefore prioritizing permeability over accessibility, to which he hardly had an answer.

Some local councillors have also said to me: "Madame Graneau, we understand your concerns.Madame Graneau, we understand your concerns, but after all, people have two arms and two legs, they can walk 500 meters to get their bread."Well, no, I can't walk 500 metres to fetch my bread. The comments are sometimes very virulent, and testify to a cruel lack of disability education. As long as people aren't directly concerned or don't have a family member with a disability, they don't realize it. It's all very worrying.

 

"I dream of an education that promotes empathy, mutual help and support, right from childhood."

EU: How can we promote dialogue and education on disability?

SG: Education plays a crucial role, especially at school level. Trivializing the presence of people with disabilities from an early age can help to eliminate curious looks. Personally, I attended an elementary school where the playground was shared with disabled children. This enabled me to feel at ease with this group from kindergarten onwards. It's essential to include testimonials from disabled people in schools to make children aware of the similarities between our life paths and theirs. 

In France, we still have a long way to go when it comes to education and prevention... I can testify to this because, despite my availability to share my experience, requests to speak at school are rare. There seems to be a superficial enthusiasm for tackling disability, but little concrete action. At present, the 5th graders in my commune only benefit from two hours of handisport per year, which reduces the discussion of disability to the prism of sport. Generally speaking, current initiatives are often limited to highlighting disabled personalities in the field of sport, and obscure more ordinary realities such as the daily life of a disabled housewife like mine.

I dream of an education that promotes empathy, mutual aid and support, right from childhood. It's essential to educate children about diversity, whether it concerns disability, old age or other aspects of difference, at least that's how I educate mine. People with disabilities and carers have a crucial role to play in this education, by sharing their experiences and helping to change perspectives.

 

"In the media, in advertising, we see a certain infatuation with this aesthetic aspect, which sometimes transforms disability into something almost seductive."

 

EU: How do you think disability is dealt with in the media?

SG: As far as amputees are concerned, we have good representatives. When you see Théo Curin or other personalities like him with incredible charisma, it's almost bankable, even if it's ugly to say it like that. It's undeniable that the advanced technology of our prostheses is impressive and admired, especially by men, who sometimes consider their prosthesis as their bike. It's amusing to see this quest for elegance and style, sometimes to the point of wearing shorts in the middle of winter. And if it contributes to their self-fulfilment, I think it's great.

I'm simply concerned about the emerging tendency to consider prosthetic devices as fashion accessories, to see them as something "fashionable". The somewhat "robotic" side that some amputees claim also disturbs me, because a robot has no feelings. Despite this, in the media and in advertising, we see a certain craze for this aesthetic aspect, which sometimes transforms disability into something almost seductive. I have my reservations about this development.

 

"I'm tired of being led to believe that a prosthesis is comfortable. It's good to represent us, but it's better to do it by explaining the day-to-day difficulties."

UE: Is this new visibility around disability linked to greater awareness of inclusion? And is this a positive development for you?

SG: In part, yes, because all of a sudden we're better represented, and people now know more or less what a prosthesis looks like. On the other hand, I have a few reservations about certain speeches that tend to idealize the wearing of prostheses, presenting them almost as tools that offer superpowers. My superpower is having to crawl into bed if my legs hurt too much and I have to take my prostheses off the couch! Beware of this need to shine, there's appearances, and then there's the reality of our lives, which are difficult. Some people are saved morally by thinking like that, and I understand that, but I'm simply afraid that some people can get lost in their rhetoric, and sooner or later live it badly. 

I'm also tired of being led to believe that a prosthesis is comfortable. No, there's nothing comfortable about a prosthesis; you can't wait to take it off in the evening because you're subjected to it. It's good to represent ourselves, but it's better to do so by explaining the day-to-day difficulties. Explain, for example, that an appointment with a prosthetist involves 5 hours of consultation. That's my life, it's far from all fun. So yes, we cling to aesthetics, to things that bring a little glitter, but if we want to talk about disability, we have to talk about it completely, with all the difficulties that go with it. That's what's important for people to see and understand, what the real day-to-day life of a disabled person is like. That's the only way to bring about inclusion and empathy. 

 

"I too often have the impression that the visibility of disability is reduced to high-level sport."

 

EU: What is your vision of the impact that an event like the Paralympic Games could have?

SG: It's always great to have this kind of visibility, there are a lot of people who thrive in these activities and that's great. However, it's not the only thing for me. I too often have the impression that the visibility of disability is reduced to high-level sport. Even in rehabilitation, we get this kind of talk: "You're disabled? Do some sport!", forgetting that this may not be an aspiration shared by everyone. 

As far as the Paralympics are concerned, I'm rather critical of the idea of lumping all disabled people together. That would be to assume that once you're disabled, you're all the same, with exactly the same abilities and the same constraints. I have a lot of trouble with that, because it's obviously not the case. 

All this media coverage of the Paralympic Games is very positive for a whole host of reasons, but sometimes I have a bit of a problem with the way things are organized. I've heard talk of the opening ceremony not being accessible to disabled athletes. Paris isn't even accessible yet, so I think we've said it all just by saying that. Not to mention the fact that we're obliged to lower ticket prices for fear that no one will come to the disabled competitions...

 

EU: So many contradictions?

SG: Yes, it's a bit like ecology and green-washing. There's an element of "it's good, we've got to do it, we've got to talk about it", so we take action and project a good image. But there's also a lot of self-promotion. I'm a bit critical, to be honest. I have a lot of free time, so I ask myself a lot of questions! 

But what's great is that it's going to put a whole bunch of people in the spotlight. And I'm convinced that for a lot of people, sport is a great outlet, it's a way of existing, it's something that can become vital. I met a quadri amputee at my prosthetist's who has taken up swimming and does absolutely nothing else. He swims all the time and wants to take part in the Paralympics. He's a great hope. I didn't feel the need, because for me, the only hope I had left when I was an amputee was my family life. That's my challenge, when my daughter wants to go for a walk, to be able to accompany her. Everyone's challenges depend on their personal and family life, their history and their daily routine.

To follow Sandrine :

Facebook page of his association : Dans mes Baskets

His book : Toxic Shockby Sandrine Graneau and Claudine Colozzi, Flammarion, 2021.