Issy-les-Moulineaux, Paris, August 24th, 2022

Good morning, ladies and gentlemen,

First of all, I would like to thank the organizers of this IADH conference for their kind invitation to give a lecture today as a key speaker.

Thank you for organizing this event, in such a difficult context. To have gathered all participants in person here today after the past two years is already a successful challenge.

I would also like to express my gratitude to the French team, SOSS France, which invited me to speak in 2020 about my experience on special dental care.

Today is the first time I’m using my voice synthesizer device to speak in English.  I am delighted to do so with you.

Finally, I would like to thank each and every one of you for attending this congress to discuss inclusive practices in special dentistry care.  It does mean a lot for me and for your patients worldwide.

You have my short biography in the program. But, please let me give you just a few words about myself.  I was born with cerebral palsy 42 years ago.

I also have athetosis, which means I have no control over my movements.

I also have no speech function, which forces me to speak to you, via a voice synthesizer with eye control !  

I am fully aware that understanding me through this system can be complicated. My assistants and I, have made sure to give my speech enough rhythm, and sufficient pauses to allow you to bear with me until the end.

I would like to start my speech now with the importance of the quality of the relationship between patient and dentist. And for me, what matters most is listening. 

Listening to the needs of the patient.  Hearing, listening, understanding what each patient means to say in its own way.  

Every patient is different. You already know that all too well.  

Listening requires a relationship over time.  I invite you to take the time, as a professional, to explain in advance, over several days, months or years if necessary,  what a particular treatment will consist in. You may try and adapt your words to the understanding of each patient.   

To make the hospital less stressful, you may suggest that someone who knows well the patient should stay at her or his side,  whether during or after the time spent in your department, if practical conditions allow for it.

Listening, meaning in that case taking care of, also means making sure that both the department itself and the people working there are welcoming,  as well as the gestures and attitudes of the team that takes care of the person who needs specific dental care. 

This is even more important if the patient has to undergo treatment in a hospital, especially under general anesthesia, if I shall speak about my personal situation.

Listening also means considering not only the treatment, but the social role of good dental aesthetics, and the way in which the treatment will affect the life of the person receiving it.

Listening in its prime sense is the body function. It seems essential to me to make the link with the way I express myself.

Before I mastered the alphabet and the French language, I used to communicate mainly using facial expressions.

Even now, this remains a crucial means of how I express my emotions, something which cannot always be conveyed through my digital voice !

I became aware very early of the role of my eyes, of my gaze.

Thanks to the way I used my eyes, my friends and family understood very early my desire and capacity to communicate and to be heard.

But, since I never pronounced a word, nor even emitted understandable sounds I couldn’t understand the importance of my mouth and dentition.

To me, my mouth and my teeth were necessary to eat, but not to communicate.

Actually, for very long, my teeth were quite a source of problems, considering how difficult it was for me to receive any treatment, but I will tell you more about this later.

Therefore, it is only quite recently that I became aware that my mouth and my teeth played an important role in my expressions and aesthetics.

I had to go to the extreme of having all my teeth replaced so that I could claim, and finally appreciate, my mouth and dentition.

And thanks to the gaze of every person I met since, I was able to discover my face,  its representation and my right to bite into life or crunch life to the fullest.

That’s why my words today might cut and bite !

I simply want to testify that getting dental treatment is more than a medical act for oneself, it is an act of dignity, an act of recognition, for oneself and for others.

It contributes to the construction of your own self, but also affects your relationships with others.

But, a dental journey can be difficult, especially for people like me, with a heavy disability.

I want to create links between aesthetics, listening to the patients, taking care of them and showing respect. That’s why, I have an anecdote.

Had I not been treated in time, I would have been forced to eat only blended food.  So, dental care also favors the socialization of the people with special needs. In the way that it would be more complicated for me and many other people in my position  to go to restaurants and ask for the whole meal to be blended,  or to be invited by a friend and not taste the same dishes as the others, or share a birthday cake for example.

Thinking about the relationship between patients and professionals, I want to focus on the connections between the person who receives care and the person who provides care.

That’s why, in my opinion, the way of  very carefully listening and taking care of, in each dentistry profession is really obvious.

These are caring jobs, performed by people who can go so far as taking more care of others than of themselves.  You dedicate your time, your energy, your skills to your practice, and sometimes you forget yourselves along the way.  We, as patients, whatever needs we require, must pay attention to it too.

If I am now known in my public life as a man with a bright smile and laughing eyes, I am very aware that this is a blessing for me,  and I know that I owe it to the French network SOSS France, member of IADH.

Today is another opportunity for me to thank the dental surgeons who carried out my dental care treatment, which in part saved my life !

I would like to illustrate my remarks with a series of anecdotes about my experience as a dental patient and then discuss with you the lessons I drew from that experience.

When I was very young, I used to live in an institute for physically disabled children. When the dentist would come, I would purposely run away hoping the nurses would forget that I had a dental appointment that day.

Afterwards, for several years, I had to undergo several surgical operations carried out under general anaesthesia, almost one operation every year, in order to treat a recurring problem of dental decays.

One day, when I was 12, my uncle, who is a dental surgeon, wanted to examine my teeth in his clinic.  I almost swallowed the little x-ray plate that he had put in my mouth.

Then, I almost broke the seat and the whole examination tray, even with 4 grown adult men holding my arms and body.

I had my first dental surgery when I turned 8. I saw a huge nurse come in and take me to the operating room.  Scared by his size, I struggled on the stretcher.

Another day, I remember being greeted by a nurse. Completely frightened by me, she immediately stuck an anesthesia mask on my face.

Afterwards, in the recovery room, gradually regaining consciousness, I started to move on the gurney.  I was afraid to fall to the ground because the bars did not cover the entire gurney.

Unfortunately, this happened again during many next operations.

This indicates a lack of training of the staff to the different types of disabilities, at that time.   Especially with invisible symptoms.

As a teenager, in the special school in which I stayed and studied for twelve years, I had my teeth checked by the dentist who came to the school. 

During the years when I had complete confidence in my educational social worker, the dentist even managed to treat my teeth in the surgery,  because he had calmly explained everything to me, and given me a little sedative to calm my fears.

On the other hand, when my special preparation didn’t work, or when I did not trust the people, the dentist had to give me a prescription to go to a specific hospital in Paris to plan an operation under general anesthesia,  because Saint Vincent de Paul hospital was the only place where they would take care of kids with anesthesia.

Once, I purposely forgot to give the prescription to my father. It was only after the summer was over, when he opened my backpack, that he found it.

At that time, as a child and teenager, I have experienced several particularly traumatic moments after some operations, including hearing some snippets of conversation,  such as “he’s crazy”  or “what’s the point of letting him live ?” from various levels of medical staff, especially in dental care !

Before finding Handident  special dental care French network in 2017, we went around all the hospitals in Paris region.

The main concern : all Paris hospitals only offered to extract teeth !

The search for the right dental care for me took a very long time.

Fortunately, a dentist friend of mine, while on holidays in Florida, met someone who knew of a network called Handident , and made the connection.

I had the opportunity to speak at the tenth anniversary of this network, saying that they had changed my life.

Due to severe bruxism, I had almost completely ground down my teeth, and I had more and more difficulties chewing and eating.

The warm and respectful welcome was worth the wait, considering that the human quality was present at the heart of the approach of this network !

This made all the difference to me !

The adult man I am today is better fulfilled, dares to smile, and now shines thanks to them.

I am over 40 now, and almost all my teeth are new ! I’m still smiling.

Now, I know how much in my communication mode my smile is part of my identity and helps build the image I send to people when I express myself !

For the public man that I am becoming, it is a real asset.

I would now like to offer you the point of view of a person with a disability concerning the points that smooth and ease,  or the points that create obstacles in the context of dental care.

For me, and I’m sure for other people with disabilities in dental surgeries, everything plays a role.

The texture of the chairs, transferring the patient on the dental chair or not,  the way it is done, the bright light in my eyes, the sounds of the drill and other dental tools, the typical odors of a dental surgery that sometimes trigger spastic attacks, delirium, mental anguish or else …

For example, the smell of eugenol makes me want to throw up !

But for many people, it can facilitate the patients’ experience.

There is no single magic formula that will work for everyone.  But there may be a magic word.

And for me, this key word is respect.

I believe it is important to focus now on this attitude, this value.

I am well aware of the challenge that listening to individual needs represents for institutions where you all work,  but it is in this listening space and time that respect can, and shall be born.

I would like respect to replace the cold notion of professional distance, which is very common in the medical field.

This distance is intended to protect both the people who take care of, and those who are being taken care of, but it is for me, deeply incompatible with adapted special care.

How can we hope to put in place a satisfactory approach without getting emotionally involved, without giving of ourselves ?

I am participating today in this IADH congress, where I am convinced that this notion of respect,  of quality of care is central,  as much in its process of creation and organization, as in its ambitions and final aims.

I told you, I had been looking for a long time for a caring attitude that would be satisfactory for me, concerning my specific dental needs.

I have only found real respect with Handident.

You may have noticed, but I am talking about dental care and not about dental management.  I don’t really know how to translate my point in English, but this refers to the way disability is considered in France. I won’t generalize all the countries, because I don’t know of all the situations.  People with disabilities are still too often considered as a burden, a problem to be managed,  and I refuse to let my way of presenting things emphasize this aspect.

So this is deliberate. Moreover, if I have often felt like a burden when I was welcomed in a medical setting, I really felt that I was being cared for at Handident !

This simple change in vocabulary illustrates a much deeper change in the way you welcome me and listen to my needs.

In short, this vocabulary is more respectful, more human.

If the way I express it can testify of a state of mind, it can also mark the beginning of awareness. Words are not innocent !

So, I would now like to talk to you about a subject that is close to my heart, and which is for me closely related to the care of people with disabilities, especially in the context of dental care.

The great question of the inclusion of people with disabilities is often related to the question of autonomy, in relation to vulnerability.

On this subject, I am sensitive to the thoughts of Paul Ricoeur, concerning the relationship between the concepts of vulnerability and autonomy.

On one hand, he invites us to recognize that we are all vulnerable, and on the other hand, he proposes to consider autonomy as a reality of interdependence and connection with others,  a relational identity.

As the philosopher Cynthia Fleury comments,  for Paul Ricoeur, autonomy is the possibility of attesting to oneself,  and vulnerability is the difficulty of this attestation.

The disabled person is therefore a victim, on one hand, of the suspicion of the impossibility of attesting to oneself,  and on the other hand, of being considered irresponsible.

It is a double punishment, in short !  A traumatic existential injunction.

Thus, to be autonomous is also to be identified by oneself and by others as a subject,  decision maker of one’s own acts.  It is also to have confidence in one’s own capacity to be this subject.

Forgive me for this somewhat philosophical comment,  but these concepts strongly explain my attitude and my fight to ensure that each person be shown respect to be put in a situation of responsibility and of empowerment to act.

This is where I want to make the link with my presence here today in front of you.

It is here that my use of the term “respect” and the expression “care” is rooted.

Paul Riqueur again, defines the role of the caregiver as being to encourage, accompany and reinforce the feeling of empowerment, the confidence, in this identity of the patient being able to act and take decision for herself, or himself.

The caregiver, and more broadly the care facility, must foster a sense of capacity in the vulnerable and autonomous person in the making,  or at least leave the door open to the possibility of this feeling.

I feel very strongly about this point.

I think it is essential to get away from the conception of autonomy as the opposite of vulnerability.

We are all, permanently, autonomous and vulnerable at the same time.

The autonomous person is then the one who is able to build her or his life story by composing, WITH his vulnerability.  And I really want to emphasize the word with.

This vulnerability is no longer a stigma,  but a simple component of her or his identity.

Given my dental history, I am fully aware of the difficulties that you may encounter in moving forward, in this way with people with disabilities.

However, you intervene on what is, according to Emmanuel Lévinas, the primordial link of the recognition of the other, the face.

From a practical and professional point of view, my experience with Handident  makes me hope that it is possible for other people,  but this presumes that all the institutions surrounding the dental practitioner, bend to this new approach, which has a human and financial cost, and which therefore needs to create a collective project for society.

To conclude, I am well aware that my comments are colored by my French nationality and our French perspective.

We have our own way of doing things,  our specific relationship to disability, our model of health care system.  This implies different realities around the world,  how the COVID crisis that we are still experiencing has been managed,  but also for ordinary care.  For example, depending on every health system of our different countries, the out-of-pocket expenses for the patient are not necessarily the same,  which can have an impact on the care options offered to the patient, and on her or his expectations.

And, these expectations are changing.

I often speak of a generation that I call “the cloakroom generation”, in reference to a French series on disability with a dark sense of humor, that is filmed in the locker room of a sports center.

To me, this generation wants to participate fully, and I believe it is also reflected in the issue of care.

Patients with disabilities have different expectations, wanting care and support that listens to their specific needs and puts them at ease.

But, this generation of patients is growing up in parallel with a generation of professionals, trained in a different way, and who are looking for meaning and social impact in their professional careers and practices.

I believe that this reality can be the source of an enhancement for both the patients in listening to their expectations,  and for the professionals in the way they provide ever more adequate responses to the challenges presented to them by their patients.

I am convinced that all of this requires what I have presented to you, as a relationship of trust and humanity,  with respect, that elevates both the dentist in her or his role as caregiver, and the person as a subject of rights.  A relationship in which the person receiving care is made active as a patient in the preparation and experience of his or her care.

I would not like to conclude without specifying that, for me, the IADH concern for quality in care is part of a more global action  that perhaps gives a more significant orientation to the notion of an inclusive society.

I will base myself on the definition of the policy of Care, given by one of its initiators, Joan Tronto :

“Activity characteristic of the human species, which covers everything we do in order to maintain, perpetuate and REPAIR our world,  so that we can live in it as well as possible.

This world includes our bodies,  our people, and our environment,  all of which we seek to connect into a complex network in support of life.”

I also invite you to ask yourself the following two questions.

What partnerships should be set up with patients who are increasingly trained and have expertise in their own health conditions ?

And second, how can therapeutic patient education be introduced into the dental care environment ?  Or, how can we exchange and transfer knowledge, skills, expertise and autonomy between patients and practitioners ?

To answer these questions and many others, I would like to dare propose a collective research initiative.

Throughout my presentation, I have shared with you my experience as a patient, my expectations,  and I have outlined the main principles on which I conceive the relationship between caregiver and the person cared-for.

But I would like to go further.

First of all, I speak only for myself.  I merely represent only a small part of people with special needs,  and I believe that the experience of each and all can be useful to everyone.

Then, and this is the most important thing for me,  I am convinced that many of you have very interesting experiences and practices to offer and share.

That’s why, I would also like to suggest that you set up a research protocol which, in the first phase, would collect practices, through a very open but rigorous grid, established with IADH and expert patients.

In a second phase, this research work could serve as a basis for an international methodological and ethical guide,  that your association could adopt at a future congress, to present as a contribution to the United Nations.

Please, forgive me for this audacity.

My only justification is to commit myself to work actively on it.

I have personally initiated a reflection based on a phenomenological approach, adapted in particular by Francisco Varela, and his work in Neurophenomenology and on Buddhism.

This is to shed light on the power to act, and the conditions of autonomy and self-determination of individuals,  and the importance of the interactions they establish in particular situations.

I think that the situation of dental care presents characteristics which make it a very favorable ground to enlighten the role of the patients in a relation of care,  but also, in interactions, to enlighten the inventiveness of the teams of carers, combined in a chain of multiple co-operations.

Which may inspire the next generations, who will come after you as practitioners of special dental care specialists.  I know how much for you, as for me, learning is giving and receiving,  and sharing is caring !

I sincerely thank you for listening.  I wish you all a very good 3 day conference.

And I will now take a few questions if you want. You may ask them with a microphone, write them down through the app for the congress or email them to me or the organizers and I’ll answer them.

Philippe Aubert

A l’été 2020, le Centre culturel international de Cerisy a proposé à Philippe Aubert de produire une intervention sur les angles morts du numérique.

Celle-ci a eu un succès tel que le comité du colloque de Cerisy a proposé de diffuser l’intervention de Philippe Aubert sur son blog France Culture et sur la Forge numérique de l’université Caen Normandie.

Suite à cette publication, l’équipe Rage d’exister a reçu un appel du Rédacteur en chef de Konbini Techno, la rédaction dédiée aux nouvelles technologies, au numérique, digital, … du media en ligne Konbini.

Nous avons été interpelés par leur enthousiasme suite à l’écoute de la conférence, leur compréhension des enjeux et leurs questions liées aux usages des outils numériques par Philippe.

Nous avons insisté que Philippe, à la différence de certaines autres personnes, en situation de handicap ou non, n’était pas un technophile convaincu, que son avis actuel était plutôt basé sur ses expériences précédentes, notamment sur ses relations humaines, sur des conférences passées où il avait évoqué ses craintes, interrogations face au transhumanisme, à l’homme augmenté par la machine.

Une rencontre en ligne a d’abord été prévue, via l’outil Discord, qui a permis de pouvoir échanger les idées, tout en étant tous ensemble à partager l’écran en direct. Ce qui a confirmé le choix de diffuser l’outil Communicator5, et a ouvert la porte à promouvoir les systèmes de l’épellation et de la licorne.

Ensuite, nous avons fixé rendez-vous à l’équipe au domicile de Philippe pour une après-midi tournage mi décembre 2020. Pierre, le rédacteur en chef de Konbini Techno est venu accompagné de Baptiste, journaliste reporter d’images et monteur, pour une durée totale de trois heures de présence.

Nous avons alors tourné dans les conditions du direct les images qui ont ensuite été montées par Baptiste jusqu’au montage final sur lequel nous n’avons pas eu de mot à donner. La confiance était totale.

La diffusion s’est faite dès le jeudi 17 décembre à 20h35 sur la page Facebook de Konbini Techno. On a rapidement compris qu’il se passait quelque chose avec cette vidéo, car le samedi 19 décembre à 17h, elle dépassait déjà les 300.000 vues.

Puis, le même jour à 19h, c’était quasiment 400.000 vues.

Cela est largement dû à la publication sur la page principale de Konbini, avec ses 54 millions d’abonnés, qui fait alors s’affoler tous les chiffres !

Car, ensuite, la barre du demi-million est franchie le matin du 20 décembre.

Et alors qu’on pourrait miser sur un effet palier ou plateau, les compteurs ne ralentissent pas.

Au contraire. Au moment du passage des 800.000 vues, le sommet du million est en approche raisonnable. Il faut se rendre alors compte de ce que l’équipe ne pouvait pas envisager avant.

Cette vidéo interview devient littéralement virale !

Enfin, le passage au million de vues ! Quelle émotion !!!

Et encore, ce n’était que le début, étant donné que Konbini a ensuite décidé de publier la vidéo sur son compte Instagram : BOOM ! 500.000 vues en une nuit. En parallèle, sur Twitter, ce sont 10.000 vues. Et sur YouTube, le 25 décembre, 100.000 vues en quelques heures.

Un mois après, les statistiques sont folles :

• Facebook : 1,2 millions de vues, 13.000 réactions/likes et 565 commentaires ;
• Instagram : 611.376 vues,  691 commentaires ;
• YouTube : 150.000 vues, 9500 likes et 420 commentaires ;
• Twitter : 12.000 vues, 13 commentaires, 90 retweets, 235 likes. 

Au total, ce sont plus de 2 millions de vues, toutes plateformes confondues.

C’est phénoménal. Pour Konbini, cela fonctionne environ pour une vidéo sur six !

En analysant les commentaires, on se rend compte :

• que le message humain, humaniste de Rage d’exister passe bien ;
• que ce qui marque le plus est le sourire, le dynamisme de Philippe ;
• que la relation avec son assistant Sylvain émeut fortement ;
• que la majorité des personnes sont émerveillées, fascinées, dans une forme de sidération, de position extra-ordinaire, de piédestal ou de super-héroïsation de la vie de Philippe (ce qui pose d’autres problèmes) ;
• qu’une minorité s’interrogent sur les conditions de vie supposées misérables dans lesquelles viverait Philippe, sur les litres de bave qu’il évacuerait chaque jour, sur la présence et responsabilité ou non de Dieu vis-à-vis de ce que vivrait, serait Philippe.

En conclusion, un an après, nous sommes enchantés par l’expérience.

Nous avons eu l’occasion de remercier l’équipe de Konbini par un dîner collectif, et évoquer le bilan de l’interview avec du recul.

Lors de formations que nous animons, nous n’avons presque plus besoin de nous présenter, ni comment nous fonctionnons, car la vidéo sert d’introduction, voire même à notre plus grande surprise de support de formation sur ce qu’est la CAA, la communication alternative et améliorée. Une consécration !!!

A la suite de cette interviews, nous espérons renouveler le maximum de partages de notre point de vue et sensibilité en lien avec le handicap et l’ensemble des sujets.

Si vous connaissez des journalistes ou responsables dans les rédactions en France ou à l’international, notre équipe serait ravie de prendre contact avec elles et eux.

Encore MERCI pour tout ce que vous nous aidez à réaliser. C’est grâce à vous que nous le faisons !!!

Nous vous invitons à consulter cette vidéo dont le propos est une synthèse d’une expertise dont Guillaume Benhamou, membre de Rage d’exister est en capacité de parler pendant plusieurs heures sur chaque sujet en profondeur.

Les Journées du CDI sont organisées par l’Institut Motricité Cérébrale.

L’édition 2020 portait sur le thème “Vivre sa spasticité” et a donc accueilli Guillaume Benhamou comme patient vivant avec une paralysie cérébrale et expert en éducation thérapeutique du patient, diplômé de l’Université des patients en 2020.