NB. I recommend you read Part 1 of this article – in which not only do I introduce my complex disability, but I also explore the importance of identity and context, and interrelationality and the fallacy of binaries – before you read Part 2.
Power is everything
In many respects, I am dripping in privilege. As a private school- and Oxbridge-educated, financially secure, white British, mother tongue English-speaking, cisgender and heterosexual man, I recognise power because I have oftentimes occupied it. However, my physical and mental ill health and disability have pushed me to the margins in vital and visceral ways.
When sat in my wheelchair, I am painfully aware that a majority of those people around me possess a power that I will, perhaps, never enjoy again. In my worst moments, my powerlessness has plunged me into despair. I can no longer live a normal life without special assistance, in and out with my home, and this lack of agency is depressing. Power, and its opposite, lurk and linger in every corner of our schools too, with their roots often deep into the soil of our culture and climate, and the broken paradigm we have inherited. It is only the school which identifies, accepts and challenges the sources of this power, and is intentionally radical in redistributing it, that can claim to be in pursuit of authentic inclusion.
It is exhausting being me
Every single journey I make – be it local, national or international and regardless of its duration – requires so much more preparation than it would do without my disability. I have to research every physical space in advance, so as to identify obstacles and actively seek mere accommodation, let alone actual adaptation. This research pertains both to the physical accessibility of built space and to the psychological safety of convened space.
I remember the same level of preparation well in advance of every single day trip, holiday, or relocation on which we embarked when my now adult, autistic daughter was a child. And this is not to mention the exhaustion of both of us, in our own ways, having to mask many aspects of who we are in different contexts, or the frustration of other symptoms being masked without our consent. In schools, standardised expectations of all students or all staff tyrannise the disabled and the neurodivergent.
The most inclusive schools recognise just how exhausting is both the planning and masking demanded of many a disabled person, simply for them to be present in school on any particular day.
UDL liberates school spaces
Universal Design for Learning has taken on new resonance and meaning to me since I have become disabled. I have become captivated by the metaphor of the spike (an intended or unintended obstacle, in any setting, which directly marginalises those whose bodies or minds work or look different); and the curb cut (an intentional adaptation co-constructed with that group so as to bring them back to the centre of the heat lamp in ways from which everyone else will inevitably benefit as well).
I often drink much less when in public so as not to need to use public bathrooms, but when I come across a bathroom cubicle with both an automated sliding door and sufficient room inside to use and turn my wheelchair, I instantly feel like I belong. This curb cut works not only for me but for everyone else too. I love working directly with students, educators, leaders and parents in hunting the spikes which marginalise myriad minoritised characteristics and co-constructing the curb cuts which disarm that spike such that everyone benefits.
If you want your school to be inclusive, it must engage multiple constituents on that ‘spike hunt’ and embark sincerely on constructing those curb cuts too.
The world is inaccessible
My able-bodied son cannot now leave his home without noticing every possible spike which would prevent me from accessing the vast majority of physical spaces because, in all honesty, most of the world is inaccessible to me even with my walking stick, let alone in my wheelchair. Most design commissions have failed meaningfully to consult the disabled user, which means that most designs directly exclude people like me from using them freely, independently and without obstacle – leaving me having to adapt, because the world rarely does.
This means that, when I leave the house, I know that, when I either most or least expect it, even the seemingly most minor barrier may as well be a huge, brick wall, and I am left, again, trapped on one side. Too many schools are fundamentally inaccessible to people like me, because too many schools are designed neither with people like me in mind, nor having intentionally consulted us too.
Inclusive school campuses provide for me a seamless journey between and within different zones and spaces, without my experiencing delay or discomfort, and affording me independence over my movement throughout.
“I believe that every single member of the school community has the fundamental right, without exception or condition, to be seen, be heard, be known and belong. To be enough; and to be loved for that.”
Policies can be instruments of exclusion
When policy precludes accessibility, something is profoundly wrong. One of the few headteachers under whom I have worked for whom I have had deep respect once told me that equality of opportunity derives from treating people differently; and we now call this equity. Too often I have been told that a school, a hotel or an airport would have liked to be accessible and inclusive, but that policy made it impossible.
A school might say they understand that, in a world where aviation fundamentally fails the disabled traveller, due to my complex, physical disability, and my being severely immunocompromised too, I can only fly safely and without pain and discomfort if I have the space afforded by a business class seat. And yet, too often, they will tell me that, unfortunately, their policy only permits the payment of an economy fare.
I even remember an airport a few years ago insisting that it was “policy” that all guests remove their shoes at security (despite the fact that no other airport asks this of me), because to put on or remove my shoes is a lengthy, painful and difficult process, often prostrate and contorted on my bed. Because they persisted, even shouting at me to comply, I tried, in vain, to oblige, leaving me sliding off the chair to the floor, crying and humiliated in public, their ableist logic arguing that policy for one must be policy for all.
If you want to be an inclusive school, both screen all your policies to be sure they are fully and unconditionally inclusive, and do not be afraid to bend them where rigidity would cause harm.
However, all that aside, there are two main challenges I have faced as a disabled person in a world built on the presumption that everyone is like the physically able majority, in perverse ignorance of the more than 1 in 5 who are disabled:
1. Where is the visibility?
I could count on a couple of fingers of one hand the number of educators and leaders in the international schools sector who are disabled. Sure, some disabilities are invisible, but the trouble with invisible disabilities, as with the lack of a disability altogether, is that I cannot see myself. For me, my other privileges have ensured this not dissuade me, and I have, despite everything, just kept going, but many are not that lucky.
Unless and until the disabled community is proportionally represented in teacher and leader positions in every school, as we are, rightly, trying to do in terms of, for example, race and colour, or gender, potential teachers and leaders with one or more disability will be confined to the edges of visibility in their schools or, worse still, will not consider a teaching or leadership career at all in the first place.
Therefore, an inclusive school is one whose recruitment decisions have been intentionally inclusive too: after all, students and staff can only be what we can see.
2. Lack of training, and experiential learning.
Too large a majority of educators and leaders I have met simply do not know enough about disability (or, for that matter, neurodivergence, mental health or trauma). If we do not know about an identity, characteristic or lived experience, we can, at best, be ignorant of its needs and, at worst, fearful of and, even, prejudicial towards how it manifests or what it represents.
Throughout my teaching and leadership career, I learned about many aspects of pedagogy and practice, and many types of learning and learner; however, until the steep learning of my own, lived experience, I knew virtually nothing about what it meant to be disabled (and it was only the fortune of being parents to two neurodivergent and trans children that I learned anything about neurodiversity or trans identity). These can and must not be on the periphery of our DEIJB work in schools.
The inclusive school will intentionally and sustainedly train its staff, parents and students about disability, harnessing the wisdom and experience of that community itself.
Moving towards universal belonging
Finally, what I have learned through two decades of mental or physical disability or ill health is what was also taught to me through parenting my two, extraordinary children: the necessity and power of unconditional love. Schools are too often engines of compliance and conformity, incentivising desired responses and inauthenticity, and applying conditions and contingencies aplenty to the conferral of worth on each constituent.
On the contrary, I believe that every single member of the school community has the fundamental right, without exception or condition, to be seen, be heard, be known and belong. To be enough; and to be loved for that.
And a future which moves closer to equity, justice and universal belonging, through both intentional and genuine inclusion and a proud celebration of the beautiful diversity of human existence, will be one infused and permeated by, and brimming with, unconditional love.
Because, after all, I belong where I feel loved, and love with conditions or exceptions was, in fact, never love at all. Maybe this is what my disability has taught me most of all and, through this article, I pass this message on, passionately and deliberately, to you too.
Formerly an international school principal, and the architect of The Mona Lisa Effect®, Matthew’s mission is to help schools ensure that every single child and young person, without condition or exception, can be seen, be heard, be known and belong. He is also a member of the Advisory Board for Parents Alliance for Inclusion, the Global Equality Collective, and a proud contributor to the Diverse Educators’ network. He lives on the Isle of Skye with his wonderful wife and atypical dog, and a selection of mobility devices.
