We are not the Other; We are Universal: Disability, Culture and Society

Introduction

It has taken me almost a full year to write this blog post. When I initially pitched the idea, I thought it would just be a straightforward affair in which I could showcase some cool examples of disability throughout history, sharing some of the work I do as a disabled archaeologist and in the process, encourage both my fellow members of the Disabled Leaders Network and the wider world to think differently about disability in the wider context of our shared human story. Over the course of the year, however, it has evolved into something far grander in scope and I hope something of a turning point for the people who read this regarding not only how they see disability as a historical construct, but also how we ourselves – both disabled and non-disabled alike – see disability not as some deviation from a supposed normative state of humanity, but as one of the most constant and crucial of human experiences.

Over the course of the past year, the global disability community has had to face the collective struggle and uncertainty that the COVID-19 pandemic has brought with it. In the UK alone, just under 60% of the deaths reported as the result of exposure to the virus between January and November 2020 were disabled people. Some of my own friends are part of this statistic, and I’m sure many other disabled people reading this either in the UK or in the context of their own countries can immediately relate to that experience of grief and loss. Not only this, but as the pandemic now continues into its third year, the world has still to fully reckon with the millions of people now effected by “Long COVID”, which the US-based disability rights advocate and prominent social media presence Imani Barbarin (known within most online spaces by her great handle, @crutches_and_spice), referred to as a “mass disabling event”. This has already brought up critical questions not only about the political response to the pandemic as a matter of public health, but questions regarding our very notions of an individual’s expected capacity, and how we collectively – socially and economically – respond to that, and who even gets to decide. Workplace accommodations, universal access to support and services, vaccine distribution and public health measures taken to ensure community safety (e.g. mask mandates, social distancing rules); all these things currently preoccupy a great deal of our minds, but these are questions that the disability community is no stranger to.

Simply put, this “mass disabling event” is causing more and more people to have to reckon with the realities of disability, and for perhaps the first time in their lives are coming to experience the trials and tribulations of navigating this new embodiment within systems that are neither prepared nor concerned to deal with this change. We’ve all seen first-hand how eager politicians and businesspeople are to push the message to “return to normal”, wilfully ignorant of the fact that such a thing is impossible. This leaves these people effected by “Long COVID” – who’s ‘normal’ has been completely upended – in a state of uncertainty as to what that means for them, when the world seems so eager to leave them behind. This is the reality of the supposed ‘normal’ we lived in, and again the disability community is no stranger to this either.

All these questions are far larger than one single blog post can even hope to address and are issues that require a larger collective will to change in any meaningful way. You might already be wondering what any of it has to do with a discussion of disability in the wider context of history and the archaeological record. The truth is it has everything to do with it, and if there’s one surer step towards a future where a new ‘normal’ is possible, our collective human past holds some crucial answers. Not solutions – those are for us here in the present to dream and create – but reflections on our capacity to think and do differently, and perhaps most crucially, why we ought to dispose of this idea of ‘normal’ to begin with.

“How do you define or explain ‘Disability Culture’?” was a question that disabled writer Emily Ladau asked her fellow disabled followers on her Twitter feed back in March last year. She welcomed responses that were serious, humourful, or anywhere in between. I read through a couple of the responses, sometimes smiling at the on-pointedness, laughing at the wonderful “crip humour”, and other times pausing to reflect on the depth of humanity on display. To me, all of these served to prove my own answer to Emily’s question:

Disability culture is one of the most intersectional and constant of human experiences. It is enriching, it is beautiful, and it is oftentimes emotionally raw in its complexities. In other words, it is what I sometimes refer to as being “(Im)perfectly human”.

Yet since giving that answer, I’ve come to ask myself more and more: what even is (im)perfectly human?  At what point did we, or anyone, decide that to be a human being required any hint of “perfection” to begin with? These are the sorts of questions that preoccupy my mind a lot as an archaeology student who focuses on disability in antiquity. While all I can say for certain is that there is rarely, if ever, one singular origin for anything, when we investigate the past, we not only seek to illuminate it but often interrogate our own relationship to the past. It’s at the juncture of these two things that I feel something emerges, something which may allow us to really begin to make sense of disability’s place within the rich diversity of human life.

Encountering Disability across Time and Space

Any responsible historian or humanities scholar will tell you that there are rarely, if ever, all-encompassing narratives that can chart out a sequence of events or circumstances that authoritatively lead to what would then seem like a predetermined outcome. Of course, that doesn’t stop any of us trying – we’re storytellers, after all – but it’s important to illustrate as best one can from the evidence the variables of what it might mean or say. I’ve often heard many scholars in my field shriek at the notion of asking “what if?”, feeling it irrelevant to the chain of events of the past. What’s the point in asking about the paths not taken if the path has already been chosen? Except, there was never just one path taken, and asking “what if?” has far less to do with imagining different pasts; it can, I’d argue, inspire us to dream possible futures.

Histories of Disability have, over the past forty years, taken shape in the context of broader studies of medicine and the body, as well as social histories of the communities and institutions that have directly sought to control and thus have impacted disabled people’s lives. The latter is certainly a response to the growth of the disability rights movement within those decades, along with the development of the Social Model and the establishment of Disability Studies as its own discipline. These histories have been transformative in our broader understandings as to the place of disabled people within modern society, and the role that states, institutions and social attitudes have on the production of those spaces.

One recurring trend of a lot of these histories, however, is the treatment of the ancient past as some sort of draconian bedrock for the formulation of disability as a systemic categorisation of people with impairments. Henri-Jacques Stiker, for instance, starts his “History of Disability” (2000) from Graeco-Roman antiquity, reciting age-old insinuations that I’m sure you’ve all heard some variation of before: that the disabled were often discarded, left to die of exposure or worse, and that if they lived at all, that they lived as total outcasts. It’s from this starting point that historians like Stiker present a very evolutionist take on human history: that it is always a progressive march forwards, even if incremental, and what’s worse in this instance, that disabled people’s fates were always bound to the whims of others, and that before the intervention of states and some form of system of welfare or care, disabled people supposedly weren’t affecting very much on their own. Or that even if we were, we were always some form of “Other”: against the norm, and therefore significantly worse off because of it.

This isn’t surprising, when we consider that the archaeologies of disability – particularly within the realms of Mediterranean archaeology – that exist have been curated in very particular ways. Robert Garland’s “The Eye of the Beholder” (1995), for example, discusses disability with what I can only describe as a sort of thinly veiled contempt for the disabled body, always emphasising its “deformity”, “weakness”, “lameness”, and ultimately always framing the disabled body as something of an anomaly that the ancient Greeks and Romans relegated from public life often as a course of precaution, and rightly so in Garland’s eyes, as the ancient world was to him totally unforgiving except in a rare few cases, and even then there were caveats. Scholars like Martha Lynn Rose and Christian Laes, in somewhat of a response to Garland and keen to embrace the Social Model and other theories emanating from within Disability Studies – such as the works of Lennard Davis or Tom Shakespeare – have taken a very different approach. They choose to emphasise impairment over disability, arguing that “disability” as a social construct had not emerged – due to, among other things, the lack of any definitive term for “disability” within ancient lexicons – and therefore, we have groups of impaired people who were in theory at least, no more or less worse off than your average Greek or Roman. Sure, they may have not been “able” to partake in certain aspects of public life, but lives they still led all the same thanks to the intervention of healers and other caregivers.

This approach has benefited also from Lorna Tilley’s “Bioarchaeology of Care” (2015), a scientific approach to the study of human remains with signs of impairment that emphasises identifying the role of caregivers in the lives of those persons. Tilley, an archaeologist with the background of a specialist carer, sought to demonstrate that impaired people didn’t just live by chance and that their communities must have taken active steps to support them. All these approaches – somewhat the mainstream of current archaeological discourse surrounding disability – like to take a far more progressive reading of the archaeological material, keen to emphasise evidence for integration and acceptance, even going so far as to suggest that because impairments were far more common in the ancient past than they are today, there was little distinction between the “abled” and “disabled” body.

As a disabled archaeologist, however, I feel as though these approaches almost go too far in the opposite direction: while they are right to say that impairments were not the sole determinatives of an individuals lived experience, the keenness to which they wish to illustrate the lives of ancient peoples as being in spite of those impairments – or not marked by them at all – means that we’ve still come no closer to understanding them as lived individuals, whose embodiments of disability would have been a key part of how they experienced the world and built relationships with the people around them. That’s the key thing we ought to be seeking:

the disabled person as an active participant in their own lives. Not just reacting solely to the actions or anxieties of others, but central to the care they received and lives they led.

What’s more, when we think of the ancient past – or for that matter, any period of our human history – we should not forget that the questions we ask are not only informed by our own present, but that the people we seek to gain answers from may not have conclusive answers of their own at all. Yet they certainly had ideas; ideas that, when seen through a lens informed by lived experience, seem to comprehend the disabled body and mind fully, even if they did not have a universal definition for it.

One such example that I can give from my own research as an Egyptologist is the case of a woman known as Geheset, who lived during the 18^th century BCE and was a noblewoman of the late Middle Kingdom. Likely born with Ataxic Cerebral Palsy, she was married to a high court judge known as Imeni and as such was known as a “Lady of the Household”, which meant that she would have been responsible not only for managing the affairs of their family but also their social relationships with other members of the social circle of Pharaoh’s court. Analysis of her remains suggests she could have lived to anywhere upwards of sixty years, which is no small feat. Regrettably, what little study there has been of her has been riddled by ableist language: One such study claims that she was “marred by gross asymmetry” and an example of “survival of the weakest”. These studies cannot (or will not) see Geheset beyond what remains of her, even though what remains is only her bones, which cannot convey either her true appearance or her consciousness. Such conclusions can only be drawn from a position (either consciously or unconsciously) that immediately sees the disabled body as something less than a nondisabled one, thus immediately dehumanising the person and eliminating the possibility of seeing the fullness of her character, even from what little evidence we get from what remains in her tomb. When I spoke about her last year for a symposium hosted by the Allard Pierson Museum in Amsterdam, I conveyed that I believe in order to understand her fully, we have to look beyond what’s immediately in front of us and consider her sense of Personhood, her Agency, and her Embodiments. This allows us to look beyond Disability in its systemic attributes as is the case today, and consider how disability as an embodiment was experienced alongside her high social status, her identity as a woman (and possible migrant from Nubia), but also her social relationships with other people. In effect, we are not just asking ourselves how others perceived Geheset, but how Geheset may have perceived herself and navigated her life; an active participant in her own life, not a passive subject.

To give another example, consider the case of a woman known as the Bad Dürrenberg Shaman, a woman from the Central German Mesolithic (c. 7^th millennium BCE) whose remains show signs of restricted bloodflow to the brain, which would have potentially resulted in seizures. What’s more remarkable is the possibility that these may have even been self-induced, if not from the very beginning then at the very least as she got older and took on her “shamanistic” role (a title attributed to her based on the nature of the assemblage of her grave). Again studies of her remains tend to focus on this aspect of her “unusual” physical anatomy, but stepping back we should also consider what this tells us about early human relationships with disability. At this time in history, hunter-gatherers were in the beginnings of exploring other ways of being, such as early agriculture and livestock cultivation, which would over the course of the next two millennia fundamentally change how human beings lived and associated with one another. The Bad Dürrenberg Shaman, then, likely played a very central role in the lives of the people around her. As well as being a mother, her experiences of seizures may have granted her “shamanistic” properties, existing between multiple worlds as people may have turned to her in times of anxiety for leadership. Rather than being “Othered” in the sense of being less than a supposed norm, it was her difference – and perhaps most crucially, her own agency in utilising it – that held her in such high status. She was seen as capable of being a leader during such transformative times.

The point of these two examples of two very different women in two very different times is that in both their cases, we see disabled people who are not only actively engaged in the worlds they lived in, but in each of their own circumstances they were turned to as examples of active and passive forms of leadership, treated not only with care but entrusted to care for their respective communities as well. Their embodiments of disability, rather than excluding them, likely brought to the attention of their communities how they were more attuned to understanding the challenges of being human. I think we find ourselves in a position now more than ever where the same might be true today.

The Soul-searching of the Present, or, why the world needs disabled leaders

Today, we find ourselves in what may be the most critical moment for humanity since the beginnings of that transition towards a sedentary lifestyle. We are staring down the barrel of an ever-worsening climate emergency, the increased threat of epidemic and pandemic-levels of illness, as well as the debilitating state of our livelihoods due to the knock-on effect these factors and the general instability of the world’s economic situation. I wholeheartedly believe that we are reaching a point where the systems we’ve built are proven to be actively harmful to our livelihoods, our very existence, yet we seem frozen by indecision as to what to do next. At time of writing in the UK, we are lacking any real form of leadership, our elected politicians more interested in creating fake panic about “culture wars” or the healthcare of trans people – let alone vying amongst themselves for political power – then attempting to even begin to answer to any of these real challenges, because the truth is they don’t have answers. They cannot see beyond the purview of a system that has been ultimately beneficial to them, even if it causes harm to so many others.

It’s exactly for these reasons that I feel disabled leaders are vital, not just for disabled people themselves, but for the whole of humanity. It’s not enough to just raise awareness of the issues, we need to have the power and ability to act. As we are likely to continue the consequences of these pressures even if we begin to seriously start addressing them – as in the case of the effects of Long COVID – the world will be in serious need of people who not only understand the flaws of our current system, but who can also devise other ways forward. Other ways of being and becoming.

This has been the truth of disabled people throughout the course of human history – it’s not our differences that make us “Other” to humanity, it’s our differences that make us human to our core.

Dismantling the barriers in society highlighted by the Social Model will not only fundamentally change our lives, but the lives of everyone; by rejecting the notion that there is one singular “ideal” form of being human, perhaps we can begin to reckon with the ways in which our lives and being have been changed by our own actions and those around us, and see that we all have the power to shape that for the better. Being human is not just a singular state; it’s a continual process of becoming.

That’s why I also want to stress that while I want disabled people to see the leadership potential in themselves, I don’t just mean that in the active sense of taking charge and making decisions collectively (the Disability Rights Movement has, at its best, been a space of collective dialogue and solutions, a practice we should seek to emulate across all sections of society). By simply being who we are, in the face of the structural ableism and disablism we experience, we are already doing something revolutionary. To love and be ourselves in spite of what society tells us is a revolutionary act in and of itself.

I study and write about disability in the ancient past not because I think it holds any definitive answers for our future as a community, but because I hope it helps to provide opportunities for reflection on our histories and experiences right up until this moment. To serve as a reminder that, even in the most trying of times, we have been there. If my one contribution to our collective fight for a better tomorrow is a celebration and deeper understanding of the lives we’ve lived before so that we are able to dream of the lives our future kin may one day be able to lead, then I take up that cause gladly.