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Being disabled in an able-bodied world

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Steering a disabled body through an able-bodied world

Matthew Savage reflects upon his experience as a newly disabled wheelchair user and on why every physical space, including spaces in our schools, is in need of liberation.

During a coaching call recently, my dog, Luna, and I were surprised by a sudden knocking at our front door. I apologised to my coachee, grabbed my crutches and went to investigate. Our house is at the remotest edge of a small crofting township on the Isle of Skye, in north west Scotland, and so doorstep visitors are extremely rare. Usually, Luna alerts us when anyone appears even on the horizon, but her guard was clearly down, and the knocking made us both jump . . .

We moved to Skye in the summer of 2021, post-lockdowns and having recently returned to the UK after a decade working in the international schools sector, our two children soon to fly our family nest. Like so many itinerant educators, enriching and mind-opening though the experience had definitely been, we were determined to find roots, and this was, we hoped, to be our ‘forever home’.

It offered a remoteness that appealed strongly to my inner introvert, and with nature at its absolute grandest at our finger – and toetips, I would be able to do some of the things I loved the most, every single day: hiking, trailrunning or losing myself in Luna-exhausting walks. In fact, there was a footpath from the end of our drive, snaking across the moors to a colony of harbour seals, but one jewel on a rugged coastline I longed to explore from the rocks, a kayak, or even, if I could brave the temperature, the waters themselves.

However, the weekend before our move, I began to fall ill. A complex neurological disorder would, within just a few months, confine me to a wheelchair, completely unable to walk. Swapping two legs for four wheels, my life would change unrecognisably.

Two years on, try as I might and despite the ‘disability pride’ badge occupying pride of place below my computer monitor, I am struggling to be proud of my disability, even though – with each passing day, week, month – the lines between my disability and me are disappearing completely.

Many of my everyday symptoms – the allodynia that secretly burns my skin, the angry twitches that shock my muscles, the stammer that silently benights my speech, the spasticity which tugs my shrinking legs – are invisible to others, even though they worry me, and my medics, the most. But everyone can see that I cannot walk, and learning to navigate an able-bodied world with a disabled body has taught me so much. About our bodies and all the things we take for granted; about a world designed and built by and for those who can walk; and about the power perpetuated by that design and construction, the tyranny of physical space.

Matthew working face-to-face recently with students from the Australian International School Saigon

I am privileged to be engaged in a project, with tp bennett architects and in association with ECIS, in which we aim directly to challenge that power and to seek what we are calling ‘liberated school spaces’. Teams of educators, architects and students will explore how the different spaces in our schools – circulation, classroom, sustenance, personal and outdoor – can too easily exclude, marginalise and oppress the very, marginalised groups they should most seek to include. A school campus, like the world beyond its gates, is, in so many ways, an instrument of power, and that has to change.

But it is beyond the school gates that I have most experienced this tyranny myself, and I share here some small windows into my story. These snippets are about planes, trains and automobiles; about bathrooms, doors, and bathroom doors; and about curb cuts, actual and metaphorical. Because all of these have, in their own way, kept me on the margins of society; because I know that my ‘protected’ characteristic is unprotected, tyrannised even; and because each of these spaces could, and should, be liberated.

Beyond the safe and known confines of our Highlands bungalow, I navigate any internal or external space in my electric wheelchair. The ‘door’ is a convenient metaphor for the portal to any community of power (we talk about getting our ‘foot in the door’, for example); but that portal, for me, is literal. If I want to enter or exit any building, or room therein, I am typically faced with a heavy, handled, hinged, outward-opening door, despite the fact that the only door that is easy and safe to open in a wheelchair is a sliding door, manual or, better still, mechanised.

This challenge is everywhere, in many an ‘accessible’ hotel bedroom, and especially so when I want to enter an ‘accessible’ bathroom. Almost every time I have wanted to use a public bathroom, I have had to ask a stranger if they would open it for me. As someone who does not believe students should have to ask for permission to use the bathroom, I certainly do not think I should have to do so myself. To add insult to injury, many an accessible bathroom does not provide sufficient turning space either; and flying out of one airport recently, I was told there was no accessible bathroom available at all.

As a consequence, I commonly try to minimise my fluid intake when out of my house, so that I do not have to suffer the indignity of a bathroom whose ‘accessibility’ is but a mirage, a performative badge that may tick boxes but does not liberate the disabled user. This is not to mention the bizarre requirement in many a public space that a wheelchair user report to a cashier in a nearby shop to collect, and return, the special bathroom key. I recognise this is to ensure able-bodied users do not occupy this targeted space – but, again, the design, much as it may seek to liberate, does anything but.

Whilst I love the success with which Zoom masks my disability, I love my face-to-face work. Norah Bateson calls this aphanipoiesis, the communing and commingling of multiple stories in a submerged, liminal space from which could eventually emerge a seedling of hope. And for me, professionally, nothing compares to this; how fortunate am I that the pandemic lifted its pall such that I can safely travel around the world again. And yet each flight, or succession thereof, treads on my agency and dignity, and my comfort and safety, at every juncture.

Meanwhile, let us return to our unexpected visitor, knocking to the surprise of Luna and me in the midst of my coaching call. He was part of a team, funded by the charity, Paths for All, who were rendering fully wheelchair-accessible the entire footpath from the end of our drive to the rocky shore in the distance.

And he wanted to inspect my trike, to make sure that the sharpest bend in the new path could accommodate its particular turning cycle.

I may cry easily these days, but I was moved to tears by this gesture. The view from my front room, until now teasing me with a landscape that I could only watch and imagine, was soon to be liberated. Both natural and built environment were bending to my needs, and the power was shifting. Very soon, I would be able to cycle to the sea, for the first time since we moved here. The seals may not have missed me, but I have certainly missed them; and, in this space, for the first time, I would finally feel free. I have yet to manage kayaking, and I cannot swim any more, but still, in a small but significant way, the sea belongs to me again.

The “Liberated School Spaces” conference, a collaboration between tp bennett, ECIS and The Mona Lisa Effect®️, will take place in London on 10 November 2023.

 Learn more and register here

 

A proud member of ECIS’ DEIJ team, Matthew Savage is an experienced, international school principal, governor, speaker, coach and consultant, helping leaders, educators and students worldwide, through The Mona Lisa Effect®, help ensure that every child, without condition or exception, can “be seen, be heard, be known and belong”. He lives on the Isle of Skye, with his wonderful wife and atypical dog.

 

Feature Image: Matthew’s disability-adapted, fully recumbent, motorised trike

Support Images: Scenic coastline on the Isle of Skye by M W from Pixabay, and thank you to Matthew for images of ‘The Disability Pride badge I do not yet have the pride to wear’ and of Matthew with students from the Australian International School Saigon.

 

 

 

 

 



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