The sea belongs to me again

Navigating an able-bodied world with a disabled body, Part 1

In the first of two articles, Matthew Savage reflects upon his experience as a disabled wheelchair user of a world which was neither designed nor built by or for him and why every physical space, including our schools, is in need of liberation.

On 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.

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, in Part 2 of this article, I will share some small windows into my story. These snippets will be 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.

I will share none of these stories, any more than I would the myriad other stories I will keep back, to elicit pity. No disabled person I know wants that. I only aim to offer a window into the tyranny, intentional or otherwise, of the able-bodied over those whose body is disabled, but some examples of the power exerted by physical spaces over those for whom said power is but a pipe dream.

Too often, the burden of fighting for accessibility, equity and justice falls to those on the margins. Some schools I visit thank me for shedding a light on the inaccessibility of their campus; it is not uncommon for a school to ask a queer educator (or student) to educate the school on the harm of a cis-/hetero-normative curriculum, culture and climate; and many a school will finally seek to adapt to the needs of the minoritized only when an educator or student happens to inhabit that particular minority. And yet, as my own story epitomises, disability is a characteristic that could suddenly strike any one of us, temporarily or permanently, at any point of our life.

Consequently, I have had no choice but to adapt myself and my life to a world which has not, nor will it, adapt to me. The crutches offered to me, by default, collapsing bruisingly beneath my faceward-falling body too many times, I commissioned bespoke crutches which not only could bear my full weight but also came with attachments for mud, sand and even snow. And I invested in a disability-adapted, fully recumbent, motorised trike, on which I can now explore the lanes and byways of rural Skye, without depending upon anybody else.

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

 

Matthew Savage is an experienced international school principal, governor, speaker, coach and consultant, helping leaders, educators and students worldwide, through The Mona Lisa Effect®, to 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.

 

This article was originally published on the ECIS’ ‘Insightful’ blog.

 

Thank you to Matthew for the accompanying images.