Catégorie : Think Sync

Kristina McMullin

Recently, Sync hosted a conversation with a group of Disabled and Neurodivergent coaches in Canada and the UK to explore the nuances and singularities of Disabled coaching, what brings us to coaching, and, and what we harness for ourselves and our communities in coaching relationships. Coaching practices are, inherently, distinct from mentoring, facilitating, training, or therapy, Disabled led coaching, even more distinct. Disabled coaching creates and environment rooted in a conviction of holding time and space for disabled bodies and minds to be supported, maintain their own agency, and create a deeper knowing of the self. When disabled coaches provide this time, space, agency, and self knowing to their communities, they are, in turn, provided with time, space, and agency to become and to know ourselves on a deeper level. Disabled coaching offers a sense of collective liberation from the barriers and difficulties we are faced in an ableist culture. 

SPACE AND TIME 

Disabled coaching gives us permission to take space, to take time, to take our time. It is a relationship and process that creates generative and even regenerative space for folks to think, to think about their lives, their options, their possibilities, their futures. 

For disabled folks, we often refer to things as having or taking “Crip time”; Kelly Frisch defines Crip as “opening up with desire for the ways that disability disrupts.” Crip time welcomes the way that disabled bodies and minds disrupt normative understandings of time. How long it takes to communicate a thought, how much space it takes to make a decision, the returning we do to a previous time in our lives, the way we cherish opportunities to carve out space for our coaching journeys. 

Disabled coaching welcomes it all. Disabled coaching offers a framework to hold space and disrupt time to honour each individual, their needs, their wants, their desires. At the same time, disabled coaching holds time and space for the coach themselves. John Kelly shares “My coaching practice gives me permission to create space.” 

The taking, the giving, the permission to take and give, and the receiving of space and time is inherent to Disabled coaching and an integral aspect to its power. 

SUPPORT

Disabled folks are entitled to and worthy of support, coaching is one way for folks to receive it. Disabled coaching does not assume the coach has the sole responsibility of offering support, but has the opportunity to create a container of support for the individual to both be supported and build a practice of and capacity for supporting oneself. 

Coaches who are dedicated to disabled coaching speak of deep listening, attention, kindness, compassion, calmness, and open, inquisitive, questions, as ways to build and form a container of support for folks to look inward and grow out. 

Many disabled coaches offering this support, know first hand what it feels like to not be support and create a practice that resists this norm. By centring the support of disabled folks, disabled coaching becomes a type of activism that makes the world more inclusive, safer, and more joyful, for disabled folks. 

AGENCY

A key component of disabled coaching is centering agency, agency of the individual receiving the coaching, and the coach themselves. Coaching continually affirms agency by remaining open and flexible to the pathways and choices that are made, by centring 

The goal of disabled coaching is to support people as they discover what they are called for and as they create a life that can maintain and sustain that. Disabled coaching does not enter into a relationship with a set goal or objective, or definition of success, it welcomes the agency of each person to define success for themselves. 

The coaching container gives permission for the mind to think and feel, and for the body to express. The thinking, feeling, and expression, build a practice of connecting with our agency. 

Coaching also requires the coach to be in touch with their own agency, Alia notes that asking yourself as a coach, what is my motivation for this, by knowing a motivation, coaches can guide folks to finding that for themselves. The coach becomes empowered to step into their own agency, Alia asks,  “What kind of coach would I be if I don’t go and follow my dreams?”

SELF

Disabled coaching is, at all times, a process and relationship that honours our authentic selves. A coaches goal is to use their skills to allow the coached individual to tap into the truest self. To go away with the barriers and oppressions we experience in society, to move away from outdated lessons we have been taught, about ourselves and the world, and 

Coaching requires us to be fully present, fully curious, and open to contentment in the answers and directions that we are drawn to. 

For a lot of disabled folks, coaching is a form of accessible work, it’s something that can be done with our access needs being met, in a community that won’t 

When coaches work with intentionality and curiosity for their community, they build the skills and capacity to be intentional and curious about them selves and their motivations. By creating space for community to become themselves, we find truer versions of ourselves. 

For disabled coaches, the goal is not to get to an externally defined end result or goal, but to support the work and transformation that occurs when we go through the layers of ourself to discover our dreams.

Belinda Locke and Kristina McMullin

Meeting in person together in Summer 2023 when Sync was in Toronto, Sync Leaders, Belinda Locke and Kristina McMullin reflected on the Sync Twilight a programme they both had trained in and delivered on in Winter 2022 and Spring 2023 online.

I’m Kristina McMullin (to the right in the picture) and my pronouns are she, her, and I’m a white, cis gender, visibly disabled woman, who works in the arts, largely disability arts, alongside academic research and a few other things here and there.

My passion in life is community building and connection. An introvert by nature, I like being challenged by people and my work and the ultimate challenge is community building because it makes me less of an introvert. And I like being less than an introvert! I like to do projects that feed my soul, and make other people feel seen, heard, and desired in community spaces. My mission statement as a human being, is to disrupt systems while being gentle with humans, to tell the truth in a way that is regenerative, to honor imperfect process and to leave room for joy and laughter. And try to do better, always.

That’s why I came to Sync because there’s an alignment of values there. I had met Sarah and Jo in the summer of 2020. It was on the first fully remote Sync coaching in training leadership, which I did from my home in Toronto, where I felt a true sense of alignment in this desire to create community, create spaces, be a disrupter while remaining true to those principles of care and support Sarah so beautifully demonstrates.

Sync Twilight (which brought Kristina and Belinda together) seemed like an obvious next step. I’ve never worked with anyone really outside of Canada and the UK, and I think that it’s great to build these like hyperlocal communities but that disabled folks are always part of the larger global community.

I’m Belinda Locke, pronouns she and her.  I live in Melbourne, Australia on the land of the Boon Wurrung people of the Kulin Nation. I’m a white, cisgendered woman. I identify as disabled. I’m a theatre maker and Director, and create multidisciplinary work where I collaborate with people from lots of different art forms. In all of the work that I do, I’m looking to create opportunities for other people to share their work alongside my own.  Sometimes I’m curating a festival programmme, or sometimes, like I’m going to be doing next month I’ve got a show opening but I’ve also commissioned other artists to create work on the same theme. I think it’s really important to show different perspectives from people with varied experiences of disability as well as different cultural backgrounds.

I did the Sync leadership programme way back in 2014, and it was so important for me.

I was early on in my career and I was definitely the baby of the group! It really helped to spur me on in a direction where I was able to work with the community in Australia, and Brisbane in particular, to set up a national disability arts festival called Undercover Artist Festival. That was really enriched from my experiences with Sync and from the Sarah Pickthall’s coaching, and the work that I did in person with Jo Verrent.

When I heard about Sync Twilight and this opportunity to co-facilitate a group with you, Kristina, I leapt at the opportunity.

I would say Sync Canada was my first experience of online training.  Having that kind of experience and being so supported with such care and flexibility. I loved it,

Kristina McMullin

I would say Sync Canada was my first experience of online training.  Having that kind of experience and being so supported with such care and flexibility. I loved it, and have always kind of judged other online development courses against Sync because it was so responsive.  It made it possible to tell the truth and be vulnerable.  My biggest goal with Sync and with Sarah, has been like, how do I or how do disability identified folks be vulnerable, while still staying safe?  Sheryl Sandberg and Brene Brown talk so passionately about the value of being vulnerable, but they’re two women who have oodles and oodles of financial privilege, career privilege, able bodied privilege, white privilege: you know, Sheryl Sandberg isn’t becoming the CFO of Facebook by like, disrupting systems!

Yes, it’s a different position to be in, to our experience. And, you know, when I say our experience there are many different experiences within the disability community, but often, I think you’re viewed as vulnerable to some extent, automatically. And so, the decision to harness that and to find strength in vulnerability is a different kind of process.

As co-facilitators in Sync Twilight, we both went through this process of facilitating sessions with a small group of people. Disabled folks from Canada and from Australia online. And we did this particular kind of coaching, using action learning. Which, in essence, I would describe as being about one of our peers coming to the meeting with an issue that they’re having in their professional life. Then the rest of the group really probing with questions that are open and not leading, and helping the person themself to find the answer to the issue that they have.  So, I’d love to know, Kristina, what you think you learned from going through the process? What did you like about it? What didn’t you like about it

It’s so interesting. I’m someone who doesn’t like seek out advice, but when I do I don’t want to have to self reflect, I just want you to tell me!  That was kind of like my immediate reception to like coaching! So I learned through Sync that job of the coach is to empower me to make my own decisions.

I have produced a podcast, so I like to think of myself as someone who can ask good questions. But I ask leading questions: I have an overarching goal. So now, how do I train myself into asking these open-ended questions? How do I make people feel the way that Sarah made me feel even if in the moment, it is a little bit frustrating?!  So Sync Twilight was like, a toe in the water and something that I knew was the right next step, to challenge myself so I can be vulnerable, and really build that confidence for this next step of my career.

I think it’s a really generous process to ask open questions that really, you’re not directly inputting experiences that you’ve been through or saying, oh, I’ve been there before. It’slike this whole group is giving their entire focus to that person. And it’s powerful. I saw ideas come to light that maybe the person wouldn’t have come to, on their own sitting mulling over the issue, but with a group of people who are asking things in this really generous kind of way they could find their own answers, and come to perhaps a different answer, but one that’s really fits right for them.  I remember, thinking back to Sync Australia initially, how Jo made it really clear that we were all responsible for ensuring access for the whole group and how that turned a switch on in my brain so I definitely became much more aware of other people’s experience and the barriers from their perspective.

Working at Tangled was my first job in disability arts: I’d never like really lived within the disability community up until then. I just was kind of like, over here, I never identified publicly as disabled and then I came into the world with a disability and realised there’s such a need for this kind of work in the arts. It needs to be public. It needs to be more loving. It needs to be more fun; it needs to be more joyful. But yes, as you and I developed in our practice, we realise that that’s not possible to create access for everyone all the time. What is someone’s access need is another person’s distressing environment. So we can aim to be access centred, and I think that’s what I liked so much about Sync. I think the fact that Sync understands the value of access standards and meets and exceeds them in every single meeting and engagement sets such a good example, and means I can do what I want to do which is build community and challenge myself and support my friends.

So, I think my key takeaway from Sync Twilight is that the knowledge is in us, and can come to light through the effort of others. And you can feel at ease in the process, to chill – that’s what I learnt from you!

So often I can like perform authenticity or I can perform vulnerability. And I think with Sync I don’t feel that pressure. So that feels nice to hear that like that comes across, that true authenticity and vulnerability where it isn’t a performance, and there is inherent value to that. I think my key takeaway is that you can redirect someone deliberately, in a careful way,  full of care, and that redirection doesn’t need to be a critique. It can just be an offering.

One of the most important things about these Sync spaces is their difference in allowing that authenticity. 

Belinda Locke

Yes! One of the most important things about these Sync spaces is their difference in allowing that authenticity.  Right or wrong, a lot of the time in my life I’m kind of keeping up a bit of a façade you know, because the structures and attitudes in the world out there mean that I can’t be how I am in my body in a way that’s comfortable for me and stay within a social standard.  In Sync it allowed me to give myself permission to come along and be like, hey, if I tell people I’m going to need to sit on the floor for a bit or turn my camera off for a bit, its fine. That even there’s no need for explanation, we get it. And isn’t that liberating?

And I love how the structure enabled us to be interchangeable in that kind of role, how we shared the leadership and support. There was I think something really beautiful about being able to use our lived experience in a way that’s not about advice giving and so it wasn’t like having to be in this mentorship role but we were still supporting other people’s growth.

Yeah – I think what I learned the most from Sync Twilight is that like we as human beings can fill multiple roles.  if everyone’s needs are being taken care of and the overarching intention is there, so our skills, our expertise, our interests can be malleable, depending on capacity and needs for that day for us and the desire, capacity and needs of the group. And that’s so liberating!

5 February, 2023  

Alia Alzougbi is a cultural strategist, artist, facilitator and Sync Associate working at the intersection of art and social and environmental justice. Her practise uses the arts to interrogate the fundamental causes of inequality and explore alternative modes of understanding the world and being in it.  Alia is Joint CEO of Shubbak, Europe’s largest festival of contemporary Arab arts and a partner for Sync Arabi alongside Art to Heart in Palestine.

A commercial flight from the UK to Jordan took less than five hours of our lives and, at least this time, we did not require assistance. Sarah and I were traveling in excitable bodies high on adrenaline and, having my so-much-more-than-an-access-support-worker, Shyama Persaud, with us meant that we could relax about worrying over long cues, lifting bags, finding food and drink and so much more that the disabled traveler usually has to contend with.

We had a good moan about the aircraft being so ill-equipped for the pain body (who on earth decided it was a good idea to model aircraft on a sardine tin?) but arriving to the warm welcome of our project manager extraordinaire, Aya Nabulsi, and an accessible hotel put all that behind us. 

Here we were, ready to deliver Sync Arabi — a disabled leadership intensive residential experience born out of the sweet entanglement of Shubbak, Sync Leadership and Art 2 Heart.

The next morning we awoke to the news that delegates from Palestine were caught by a crackdown from the far-right government of Israel. Roads leading in and out of the illegally-enclosed Occupied Territories were impenetrable. My imagination took on a bird’s eye view of taxis carrying our colleagues traversing grey lines of asphalt with potholes dotting those neglected essential arteries of mobility and, within those cars, artists not only disabled by their own societies for the divergence of their bodies from the so-called ‘norm’, but also disabled by a colonial project of land enclosure on a mass scale upheld by a sinister and corrupt world order. 

Six cars carrying five Deaf and Disabled artists and our colleague Suha from Art 2 Heart,
Wind their way through impenetrable roads,
Reversing and tentatively traversing another route,
finding that blocked;
reversing and tentatively traversing another,
and another.

For those of us waiting in Amman, time was suspended. We needed to find a way to ensure the residential course went ahead. Could we deliver it as a hybrid event if they did not make it through? And if they did make it through, how could we best invite rest, ease and recovery? We got to work on scenario planning – if…, then….

Then, one by one, the Palestine colleagues arrived, not-a-little frazzled by their journeys, and yet so graceful in their greetings.

Alia Alzougbi

And then we saw Suha Khuffash. And the warm embraces that ensued were so much more than those of co-conspirators finally meeting in the same physical space after months of virtual planning. Ours were embraces laced with a sad elation that, in spite of the mobility rights of Palestinians remaining unhonoured, there was hope still that they may come through, coupled with a defiance that our non-normative bodies would ultimately coalesce through of the multiple barriers we face. Hope grew in our brittle bones and attriting nerves and muscles. 

Then, one by one, the Palestine colleagues arrived, not-a-little frazzled by their journeys, and yet so graceful in their greetings. Jordan is less than 200km away from Palestine, and yet some of our colleagues’ journeys took 12 hours in comparison to our measly five from the UK which is over 3500km distant. Access becomes a dizzying point of crisis when geo-politics and disability intersect.

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In a windowless hall with a bright red and yellow carpet crowned by an art deco chandelier, we gathered with our wheelchairs, note-takers, text-to-speech tech, braille books, sign language interpreters, walking sticks and aids and all manner of support we could fathom to thrive in a world that was neither built by or for us. And so, as in so many gatherings of Deaf, Disabled and Neurodivergent, we did what it takes to ensure that this space would be accessible.

The next five days were a heady immersion in Sync Leadership tools and theory, meditations to lean closer into ourselves and each other, and affirmations to find our collective courage. Sometimes consensus settled in. Other times it was clear how disagreeing well made us so much more than the sum of our parts, because there was so much more than a common cause that bound us. There was real intrigue and a genuine desire to explore how Deaf and Disabled bodies, in all their variety, can be the sites of true societal transformation.  

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And perhaps some of the most radical moments we shared were those of joy and laughter — that in spite of it all, we made it together. Etched in every sinew of my body is that first explosion of laughter when the uncensored Sharihan exclaimed, after an admittedly too-long introduction from Sarah and myself, ‘Uff! I was wondering when you two would shut up already!’

And when Jeries, on the bus journey to our welcome dinner, commented on his delight that there was not the hint of a smell of another man in the cohort;
And when we heard of the surreptitious after-hours blind-led tours of Amman which Rawan had been organising for the group;
And when Safaa and Shaima’s laughter reverberated through an overly-sanitised hotel lobby as they skidded in their wheelchairs in an impromptu race to their coaching sessions;
And when the ever-resourceful Hala rose to the challenge of finding the only fully accessible cafe in Amman for our goodbye shisha;
And when Yara and Diana were reduced to tears of laughter upon finding a common language that traversed Deafness and Blindness on our last night together (and I tell you, the rest of us so wanted to be let in on that language of pleasure activism).

I cannot speak for the others, but I certainly left Sync Arabi giddy with the power of a collective dream.

Alia Alzougbi

There is a rich countercultural spirit that the transnational Deaf, Disabled and Neurdivergent community can offer if only our right to resources were not repeatedly robbed from us. The solution-finding creative intelligence of non-conformity born out of circumstance is a well of wealth our problem-ridden world can only benefit from. The more obstacles that are placed before the realisation of that dream, the more we all lose out, all of us. But let that not be the reason; even if folk had nothing to offer, let us move away from the ever-extractive capitalism-serving constructions of a life worth living, and the lies. The lies that our worth is in our productive capacity, the pace at which we live and work, the number of outputs we are able to spit out. 

On the last day of the residential experience we spoke of courage, and out of that came a call to love from the cohort of eight – to trust, to be generous and to uphold kindness even through fury over injustice. This is where the revolution lives. In a world where ubiquitous ideas around ableism are so easily internalised, where bodies that digress from constructed normality are regarded with suspicion, even repulsion, the call to love is the most radical, revolutionary thing any of us can do. 

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Postscript – At the raw intersection of disability and mobility justice in the fold of environmental catastrophe

12 February 2023

In the early hours of the morning after we returned to the UK, a devastating earthquake struck the region, with Gazintiep as the epicentre, wreaking unimaginable death and destruction in both Turkey and Syria, and with strong tremors felt in Lebanon, Palestine and Jordan. As bodies, dead and alive, continue to be pulled out from underneath the rubble, the realisation comes that disabled bodies were inevitably slower, less likely to survive. 

With the Earth increasingly kicking back at the rapacious invasion of its resources for profit, the body that cannot run or traverse physical obstacles, cannot see where it is going, cannot take an audio cue of incoming threat, is significantly less likely to survive. We become reliant on those who love us to carry us, to run alongside us, to invent all manner of ways to speed up an inevitably slower escape. We are reminded that our very survival is deeply entwined with the health and wellbeing of the Earth, our only home. We are reminded, if nothing else, that for the sake of our disabled loved ones – our elderly parents, our babies and toddlers – we must stand up to the corporate greed driving environmental destruction on a mass scale.

More about Alia:

Alia has worked with national and international organisations, including the National Theatre and the British Council, to create critical encounters in education and the arts towards collective liberation. She has curated a range of interventions and creative disruptions, from local corner shops to world-renowned museums. Alia is a Chevening Scholar, a Clore Fellow, and a Fellow of the Royal Society of Arts, and volunteers as a coach and mentor with those experiencing reduced access to opportunities in the cultural and creative industries. She is a recipient of the Writer’s Guild Olwen Wymark Award for the encouragement of new writing in 2019 and was nominated for a BAFTA Scotland in 2008.

In the second SYNC Leadership online program 22 session, the cohort were asked to find a metaphor for their leadership. Choosing the metaphor of a sock, Jodee Mundy thought about how a sock can mean many things.  A lost sock, to find your pair, pull your socks up, to shed your skin and so forth.

Prélude Créée au sein de ma mère Se développant dans son ventre paisible Les mouvements s’agitent, secouent et vibrent toute ma famille malentendante

S-kin Née dans deux mondes Je suis différente de mes parents, Même si je suis l’une d’entre eux J’ai la peau auditive

Réalités alternatives Grandir en enfant entendant d’adultes sourds Naviguant La vue et l’ouïe, Culture sourde Culture auditive Auslan Anglais Capacité Invalidité Exclusion Inclusion Ignorance Privilège Donc binaire mais profonde

Calcul symbiotique Ma famille et moi partageons le même objectif : « Que nous soyons égaux. » J’interprète pour ma mère, Plaidoyer côte à côte pour la justice sociale Pour les droits de l’homme d’autrui

Professionnalisme Mon rôle a évolué à partir de la famille En devenant une alliée professionnelle J’ai interprété et défendu avec plusieurs Pendant des décennies, avons-nous essayé, avons-nous essayé !

Quarante ans Interprétation, plaidoyer, bilinguisme, Expliquer, éduquer, consulter, Diriger, jouer, expliquer Mentorat, rédaction, bénévolat, Collecte de fonds, direction, programmation Accès et inclusion… hmm Par où commencer… ?

Thérapie 40 ans de thérapie, Culpabilité d’être « eux » Chagrin, colère, dépression Le statu quo recule Accès et inclusion

Diagnostic Comme une chaussette Évoluer de l’intérieur Vers l’extérieur Vers l’intérieur à nouveau Il y a trois ans Ma chaussette a révélé une nouvelle peau « Vous avez un cancer de stade quatre » me disent les médecins« C’est incurable », disent-ils.« Je ne sais pas combien de temps il vous reste » « Mieux vaut le prendre au jour le jour »

Adieu Adieu à mon innocence Adieu à ma vie en santé Cette femme est atteinte d’une maladie en phase terminale Avec une fin possible assez proche

Maternité Avec la douleur, la peur, le chagrin Comme mon nouveau train-train quotidien, J’ai passé 2020 en confinement À aimer mon nouveau bébé Avec un corps malade

Peau Et pourtant, malgré mon pronostic Trois ans après Une nouvelle liberté a été trouvée De l’intérieur De l’extérieur Et à nouveau à l’intérieur Je suis enfin dans ma peau

VIP Je suis handicapée moi aussi Comme toute ma famille Finalement ! Ne suis plus une initiée / étrangère Je fais partie du club C’est nouveau pour moi, Pourtant familier Je me sens vulnérable mais forte

Moment de révélation J’ai compris l’accès et l’inclusion Mais bon, Le capacitisme est un niveau supérieur…

Lorsque vous êtes… Lorsque vous êtes payé moins que toute votre équipe Même si vous êtes le leader handicapé Ou lorsque votre patron préfère l’avis de votre médecin généraliste Et choisit de ne pas vous écouter Quand le chimiste compte vos opioïdes mensuels Pour vérifier que vous n’êtes pas accro Lorsque vous devez indiquer votre numéro UR chaque semaine au personnel hospitalier qui vous connaît Les scans mensuels, les revues trimestrielles, La vitesse à laquelle le monde se déplace Les siestes quotidiennes, les promenades haletantes C’est très difficile de suivre Je vais vous dire que… Lorsque vous défendez votre vie au Parlement Dans l’espoir qu’ils financeront votre détresse face au cancer Lorsque vous essayez de vous intégrer Même si vous leur avez donné toute votre valeur Lorsque vous leur parlez d’une augmentation salariale Ils disent « désolé mais c’est comme ça » « Ce n’est pas de notre faute si vous ne pouvez pas suivre » « Nous sommes vraiment désolés de votre diagnostic, Ça doit être vraiment dur ». Quand vous devez vous mordre la langue Cachez vos larmes Gardez la tête haute Et expliquer« Que c’est le meilleur qu’ils obtiendront Et que vous en valez la peine encore et encore »

Conclusion (au moins pour maintenant) Concilier vie de femme et de mère handicapées En tant que leader et artiste handicapé Ma respiration, ma capacité, mon énergie C’est une ligne fine à franchir… Pourtant, plus ces plis de peau sont profonds, plus mes chaussettes sont profondes. Plus je me sens connectée. Je vais continuer à relever mes chaussettes, Créer Mener doucement Ne pas abandonner, Me tenant sur les épaules de ma famille handicapée Toutes nos trois générations Quand les choses se corsent

Jodee Mundy OAM est une artiste interdisciplinaire, directrice de festival, activiste et leader culturel basée à Melbourne. Signataire du patrimoine de la langue des signes australienne, elle a grandi comme la seule personne qui entend dans sa famille entièrement sourde. En novembre 2019, Jodee a reçu un diagnostic de cancer en phase terminale alors qu’elle était enceinte de trente-cinq semaines. Peu de temps après, elle est entrée en confinement pendant près de deux ans. Avec une survie de trois ans, Jodee vit de traitement en traitement en fonction des derniers traitements révolutionnaires contre le cancer. En 2020, Jodee a reçu une médaille de l’Ordre d’Australie pour ses services aux arts de la scène. www.jodeemundy.com

Concevoir un espace créatif pour les personnes avec une déficience sensorielle* et mon capacitisme intériorisé.

Je suis l’une des quelque cinq cents personnes dans le monde diagnostiquées, après une recherche de quatre ans, avec la maladie auto-immune du syndrome de Cogan. Alors que je perdais l’ouïe, plusieurs spécialistes ont rejeté mes symptômes comme maladie mentale. Parce que c’est rare, il y a peu de recherches en cours, donc trouver un soutien médical est difficile. La maladie de Cogan implique une inflammation vasculaire des oreilles, des yeux et du système vestibulaire. Au fil du temps, cela entraîne une surdité, des vertiges et, pour certains, une perte de vision.

La maladie chronique présente une diminution de l’état de normalité de la perfection humaine. Cela prend du temps, mais lorsque nous acceptons notre handicap, nous embrassons la compréhension innée d’être pleinement humain parce qu’il n’y a rien de naturel dans la perfection humaine. Je crois que notre obsession d’imiter la norme via notre capacitisme vient d’une culture qui marchandise tout avec des promesses de santé parfaite, de beauté, de popularité et de bonheur. Personnellement, ce système de croyances, en plus des traumatismes sociaux quotidiens du handicap, me fait inévitablement tomber dans le piège de la honte de la surdité, la honte du TDAH et de la honte des maladies chroniques rares.

Dans le cadre du programme Sync, j’étais ravie de partager un espace artistique en ligne pour les personnes handicapées et de voir l’acceptation radicale des handicaps en action.

Avec la perte auditive et visuelle, l’industrie médicale est notre première et souvent la seule référence pour notre invalidité continue. Bien que nous puissions avoir besoin d’un traitement pour ralentir la perte, il est tout aussi essentiel de développer une acceptation radicale de soi, un but et une communauté. Pour que les personnes handicapées s’épanouissent, nous devons construire la fierté du handicap en conjonction avec nos autres identités de fierté comme le féminisme et trouver nos communautés.

Sans communauté, il n’y a pas de libération.»* La proposition de Lourdes de communauté en action est évidente dans la communauté collaborative de la production de céramique. L’espace partagé au quotidien, l’équipement, les outils, les compétences et les machines sont communs et célébrés.

Avant ma surdité, j’ai été témoin de l’oppression sociale en tant qu’enfant de parents homosexuels qui militaient pour les droits des femmes. Je ne comprenais pas pourquoi mes deux mères ne pouvaient pas se marier ou être inscrites comme proches parents à l’hôpital ou pourquoi elles avaient manqué 45 ans d’anniversaires de mariage. Je les ai entendues se dire qu’un mariage n’avait pas d’importance et que le morceau de papier n’avait pas d’importance ; C’est ainsi que ma famille a intériorisé l’homophobie.

Vers la fin de 2017, un référendum a eu lieu en Australie sur la légalisation du mariage homosexuel. Avant sa mort, ma mère a été dévastée lorsqu’elle a vu les résultats mitigés du référendum 60/40 sur le « oui » dans nos banlieues. Comme ma mère se mourrait de leucémie, nous avons dû obtenir leur autorisation de mariage précipitée par les canaux bureaucratiques. Elles ont passé deux jours à l’hôpital pour les soins palliatifs, et elle était partie. Nous nous sommes considérées chanceuses parce que leur cérémonie de mariage était l’un des meilleurs moments de notre vie.

L’idée que j’ai tirée de cette expérience était comment pouvons-nous faire la différence entre nos désirs et besoins intrinsèques et l’oppression intériorisée si quelque chose a toujours été interdit ? Le fait de voir l’acte du déni autoprotecteur en action était révélateur, car il montrait comment nous intériorisons le sexisme, l’homophobie, le classisme, le racisme, la transphobie et le capacitisme.

Quand mon fils était bébé, il ne pouvait pas dormir plus de deux heures et se cognait la tête à plusieurs reprises. Les pédiatres avaient de faibles attentes et, après cinq ans, il a reçu un diagnostic d’autisme, de trouble du sommeil RL et plus tard de TDAH et de dysgraphie. S’occuper de mon fils neurodiversifié m’a appris que se concentrer sur ses « déficits » à la normativité est toxique et improductif (beaucoup de thérapie ABA est maintenant considérée comme abusive par de nombreux adultes autistes). En regardant mon fils, qui joue maintenant dans un groupe de jazz et étudie l’ingénierie, j’ai appris que les personnes atteintes d’autisme et de TDAH sont de superbes spécialistes et que vivre avec un handicap est une question d’adaptation et d’innovation. living with a disability is about adaption and innovation.

Nous avons l’habitude de dissimuler des handicaps pour paraitre normatives afin de ne pas mettre les autres mal à l’aise, mais cet inconfort nous inclut nous-mêmes. Lorsque nous ne pouvons plus passer pour normatives, notre stigmatisation inconsciente nous pousse à nous retirer pour des raisons de sécurité ou à endurer des « sorties » quotidiennes du handicap. Mais nous pouvons l’utiliser pour développer la fierté du handicap. Seule une infime proportion de personnes handicapées dans le monde s’identifient comme handicapées en raison de la stigmatisation. Et notre biais de confirmation inclut des comportements capacitistes tels que ne pas socialiser avec d’autres personnes handicapées.

Watching my son, who now plays in a jazz band and is studying engineering, I learned that people with Autism and ADHD are superb specialists and living with a disability is about adaption and innovation.

Pour ma part, l’épuisement cumulatif du capacitisme pandémique m’a amenée à me retirer de mes groupes de camarademie après la combinaison du capacitisme médical des maladies rares et des barrières quotidiennes de communication des sourds avec la lecture labiale et les masques. Le capacitisme vient souvent de l’illusion d’un choix personnel. Nous semblons choisir de nous retirer des activités sociales alors qu’en fait, il peut y avoir eu une difficulté à communiquer dans les foules et une vulnérabilité immunosuppressive pendant la Covid.

Mon approche artistique ressemble beaucoup à une expérience scientifique. Alors que je m’entraînais à la céramique pendant ma maladie, je suis tombée passionnément amoureuse des réactions chimiques dans la glaçure céramique. Maintenant, je veux expérimenter, collaborer avec mes expériences et celles d’autres personnes et artistes d’être handicapées sensorielles.

Le programme Sync m’a donné la clarté et la force d’aller de l’avant et d’excellents outils pour comprendre mon processus de prise de décision et le sentiment de dignité pour demander de l’aide. Cela m’a permis de voir grand et de voir ce qui est possible – en utilisant mes connaissances techniques en céramique pour créer un environnement inclusif et collaboratif pour les personnes sourdes et aveugles – en fournissant un lien social grâce à un centre culturel pour la production de céramique et les collaborations en art contemporain comme lieu d’excellence créative pour les personnes handicapées. Je veux montrer aux gens un exemple de ce dont ils pourraient être capables après et pendant la perte d’audition et de vision avec la communauté et l’autonomisation.

Kirsty Collins, 2022

Les déficiences sensorielles font référence à la cécité, à la surdité et au spectre sourds-aveugles

* Lorde, Audre. « Les outils du maître ne démantèleront jamais la maison du maître.» 1984. Sister Outsider: Essays and Speeches. Ed. Berkeley, CA: Crossing Press. 110-114. 2007. Imprimé. (L’un des meilleurs discours jamais écrits !)

(One of the best speeches ever written!)