Stories/Lived Experience
Author: Mac MacLachlan, Assisting Living and Learning (ALL) Institute, Maynooth University
Different models of disability understand disability in different ways. The medical model associates disability with illness, deficit or disorder; and with the limitations these impose on individuals. The social model sees disability, not as a personal attribute but as the experience people have of barriers to their participation in society. The human rights model recognises both social barriers to participation and personal experience (for instance chronic pain) independent of barriers; and it asserts people’s rights to overcome barriers and access services to fulfil their right to fully participate in society. The United Nations Convention on the Rights of Persons with Disabilities (CRPD, 2006) embraces the social- and human rights-based models and obliges States that have ratified it – Ireland did in 2018 – to provide the necessary services and supports for its implementation.
In 1998 Judy Singer, an Australian sociologist who is also autistic, introduced the term “neurodiversity” (Singer, 2016). Just as people differ (are diverse) with regard to height, weight, or colour; they may also differ in brain functions – such as sound perception, pattern recognition, or stimming (self-stimulatory behaviour, such as rocking your body back and forth, which can help regulate emotion). Many people tap their foot, or their finger when a little agitated – that is also stimming. From a neurodiversity perspective such behaviours are seen as part of human variation rather than a disorder (as in “Autism Spectrum Disorder”) – neurodiversity sees autism as part of natural human variation – diversity – not a disease, not a disorder, not a deficit; just a difference. So, while neurodiversity recognises that different biology may confer different experiences, it also recognises that society places barriers to participation for people who differ from a neurotypical norm.
So with different ways of thinking about disability and diversity, how should people with such experiences refer to themselves? An easy answer is “however they want”; but the real question is perhaps more what makes people want to refer to themselves in one way or another and what are the consequences? An excellent discussion of these issues in relation to autism is provided by Vivanti (2020) and a response by Botha and colleagues (2021). Here however I want to share my own experience both as a neurodiverse person and as someone who works in this area.
The CRPD uses legalese of “persons with disability”, which may be considered to reflect the individuality of personhood, rather than a more collective “people with disability”, although the latter seems more familiar in the discourse I come across in my role as Clinical Lead for Disability Services in Ireland. However, some people don’t agree with either of these forms of phrasing.
If people consider themselves as part of a neurodiverse group – so different in terms of their position on a continuum of human variation; but not disordered, or deficient or diseased – then how should they refer to themselves? I am dyslexic, which is also considered an example of neurodiversity; as are, for instance, Attention Deficit Hyperactivity Disorder (ADHD), dyscalculia (difficulty with numbers), dyspraxia (difficulty with coordination), Tourette’s ( experiencing tics – repeated twitches, movements or sounds; in a minority of cases this includes coprolalia, or the uttering of obscenities.) Rather than “difficulty” and just to represent the other end of the continuum, an example would be hyperthymesia (the ability to recall life experiences in extraordinary detail). So neurodiversity, is, well, diverse. An increasing number of neurodiverse people prefer what is referred to as “identity first” language – describing themselves as an “autistic person” or a “dyslexic person”. Identity first language is popular among activists and groups that represent people with disability. Let me however outline a few concerns I personally have with identity-first language.
What if I am an autistic person and an ADHD person at the same time? How should I chose my identity? Should I order my differences in terms of diminishing significance of how I personally identify? Might I be a dyslexic, autistic, ADHD person; and might that order change depending on time and context? Perhaps I could just be a “disabled person”. But being a dyslexic person or a disabled person, is problematic for me as the importance of my dyslexia/disability in relation to my own identity is way down the list. Before I am “dyslexic”, I am a father, a husband, a clinician, an academic, a farmer, a swimmer, a walker, a sailor; I am a mixture of being Irish and Scottish; and then, and only then, am I dyslexic. That doesn’t mean I am not “proud” of my dyslexia, appreciative of its benefits, or struggle with some of its challenges, or that I wish to somehow diminish its salience; it just means it is not the primary way in which I think of myself – it’s not my primary identity. And I don’t like being told that it should be! I believe that I have the right to choose my own identity – surely we have had enough of institutional power telling us what we are or should be. And yet, I have been told the “right way” to identify myself – I must acknowledge however that dyslexia is not a visible disability, nor may it be apparent (for instance in my writing of this) and so I have more discretion about how to present myself and what to disclose than someone with a visible physical disability. However we should not assume that presentation and identification should be the same; it may be especially important for people with visible disabilities to identify themselves in ways that are different to how others see them.
There are three other reasons that I don’t like the assertion that “identity first” language – which is of course a choice – is necessarily the “right choice”. In my own work on social inclusion (MacLachlan, 2006), I have found that the way to promote acceptance of people who are “different” is to focus on the similarities between them and those who may – either deliberately or unwittingly – marginalise them. You don’t promote inclusion by stressing the differences between people – apropos identity first language – “I’m a disabled person”. In my experience, some people with disability, by emphasising their identity as a disabled person may disproportionately emphasize difference rather than commonality.
A challenge with identity-first language, especially for experiences such as autism which are now conceptualised as being along a continuum, is how far along the continuum do I need to be before I can claim to be an “autistic person”. Is very minimal autistic experience sufficient to label oneself as an autistic person and primary identity? If so, then we are in fact close to treating a continuum like a dichotomy – if you have any autistic experience, then you’re autistic, if you don’t, you’re not. That is back to a medical/categorical disease state – you have it or you don’t – and a long way from the virtues of the neurodiversity approach we discussed earlier.
Identity-first language is often associated with the British social-model of disability; in other countries person-first language is more prominent. My colleague in ALL, Delia Ferri, has pointed out to me the very Anglo-Saxon nature of this debate. In other languages, the adjective routinely goes after the noun; for instance, “persona disabile” or “persona con disabilita’, in Italian. In Irish, a “disabled person” is “duine faoi mhíchumas”, a person under disability. We therefore, I believe, should be careful to avoid the idea that a single linguistic contruction is the only correct one. Linguistic constructions and experiences of disabilty are both diverse.
The positive value, strengths and benefits associated with the neurodiversity movement do not require endorsement of identity- or person-first language. Identity should be a personal choice; identity which segregates may also exclude; and knowing just how much you need to be “it”, is a problem reaching beyond neurodiversity and disability. For instance, mental health problems are expressed along a continuum (see Tebeka et al, 2020), but it will be a while before our classification systems fully acknowledge this. But when they do, we may use multiple disability and mental health identifies, as prefixes or suffixes; or we might just decide who we are, ourselves.