Exploring disability: from theory to personal perspective.
Updated: Dec 7, 2022
This autumn I have started a part-time PhD with the University of Exeter’s European Centre of Environment and Human Health (ECEHH) , as part of the GroundsWell project, researching the issues surrounding disability and wilder urban green space, touching on elements of environmental justice. Starting out this seems like a hugely complex issue, one which pulls in strands of my former life as a health professional, my current interest in nature recovery, as well as my lived experience of someone born with a hearing loss. Over the next four years I hope to unpick some of these huge issues and weave them back together, to allow disabled people’s voices and stories to be heard, and to learn where disability fits within urban green space policy / decision making, and the wider Rewilding discourse. Embarking on this research has led me to re-examine my current beliefs and understanding of disability.
I was born with Herlyn-Werner-Wunderlich syndrome with associated hearing loss, and as a partially deaf individual training to be an Audiologist back in 1995, it has been really fascinating to look back at how I was initially taught to frame disability. It was strange to be taught concepts, definitions, and categorisations, that applied to me but were abstract theories designed to make it easy for others to understand people like me, but how did I understand myself? With words such as ‘handicapped’ and ‘crippled’ still in the lexicon of the day, I was taught to analyse and quantify peoples’ hearing loss in terms of impairment and rarely in terms of how much difficulty the person had in living their day-to-day life. This was the Medical model of disability. The medical model puts the focus of the disability onto the individual, where their physical or mental capacity, limits the individual’s ability to be able to participate in wider society.
The focus is on impairment and how it can be ‘fixed’ by rehabilitation or providing segregated services. This focus individualises disability and can lead to disabled people viewing themselves as ‘lacking’ or in need of further fixing. It also victimises disabled people and encourages wider society to view disability in terms of vulnerability and ‘pitying.’ Some have suggested that this medical modelling of disability inadvertently leads to oppression, where people with an impairment are less likely to challenge their exclusion from wider society and become more accepting of discrimination.
Another model that sits alongside the medical model of disability is the Charity model. Here it frames disabled people as in need of pity, living ‘tragic’ lives, being vulnerable and sees non-disabled people as philanthropic saviours. Michael Oliver & Colin Barnes argue in their book ‘The New Politics of Disablement’; that “within modern capitalist societies, disability is produced as an individual problem underpinned by personal tragedy theory and shaped by a process of medicalisation.” Indeed the definition of disability in the Equality Act 2010 states: "You’re disabled... if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities." This very definition seems to individualise disability and sit firmly within the medical model.
The teaching on my Master’s in Audiological Rehabilitation back in 2009 had shifted towards
a Social model of disability, where exclusion, lack of reasonable adjustment, prejudice and discrimination by society leads to disabling barriers. Disability is seen as ‘a relationship involving the state of the individual (their impairment) and the state of society (the social restrictions imposed on individuals)’, . Where organisations have inflexible procedures, practices and inaccessible services, communication, or buildings, which fuels stereotyping and discrimination.
Another 10 years later, where are we now with disability justice? Well the medical and charity model are still widely used in society and particularly within the media but the theory now moves beyond the social model. In my current extremely limited knowledge of where the models are, we can think in terms of disability continuums. These sliding continuums from enablement to disablement.  Where sometimes disabled people are disabled by society and, sometimes they are not, depending on the barriers that they encounter daily. Often a socio-economic factor can itself be disabling, this is seen starkly in the cost-of-living crisis where some disabled people have inadequate funds to keep their homes warm and eat nutritious food, which leads to poor health outcomes making their impairments or conditions worse and disabling them further.
As an Audiologist I often had to define and classify someone’s impairment for medicolegal cases or Access to Work assessments, where we were categorising people’s tinnitus or hearing loss in terms of 'damage done' or 'assistive equipment needed'. I find it a struggle to abandon the medical model completely and frame everything in terms of societal effects, as there are occasions where the ‘impairment effects’ do impact lives on a practical level. An example of this was seen when we were assessing the ‘fitness to work’ in extreme environments for Firefighters, where they are required to wear protective clothing, hoods and respirators; could they do this with a hearing loss? Were the hearing aids helping sufficiently enough to ensure the safety of the individual and colleagues as well as ‘get the job done’ of fire rescue? What would happen if a hearing aid battery suddenly died mid rescue? How would the hearing aids work at hot temperatures? All these questions were assessed in terms of the formulaic Health & Safety at Work regulations but were contrasted with the understandable desire of many individuals to continue in their frontline firefighting roles, which they had trained so hard to achieve, and was such a huge part of their own self-worth and identity… These ‘impairment effects’ or implications of sensory impairment combine elements from both the medical and social models of disability.
Other ways of framing disability include the Affirmative model, which is a non-tragic view of disability, embracing how disability shapes lived experience. Where impairment is a characteristic of difference not inferiority. Dr Colin Cameron suggests that the Affirmative Model “offers a renewed framework for making sense of the individual and collective experience of impairment within a disabling society, something that’s maybe been lost in this whole pursuit of the mainstream”. This is described by a participant of Dr Cameron’s research: ‘It’s very hard for me to imagine myself as separate from my disability. To an extent, the disabilities that I have are the price I pay for being the person I am. And I don’t particularly want to be anybody else. So, I’m willing to accept that as a package.’ 
I often think back to that ten-year-old, having her first hearing aids fitted and deciding that day to become an Audiologist... where would I be without my hearing loss? It has shaped my life and world view in so many ways.
Many disability activists now talk in terms of ‘identifying as disabled’. This allows disabled people to self-determinate, which is particularly relevant to those with fluctuating health conditions where sometimes if they have a flare up or worsening of their condition, they may feel disabled. From a different perspective, societal changes can make a person who previously may not have identified as disabled, encounter new, unfamiliar disabling barriers.
An example of this was seen recently during the Covid 19 pandemic where the government mandated the use of face coverings to stop the spread of coronavirus, but this led to huge issues for Deaf people and those with hearing loss which rely on lipreading. Suddenly those individuals that normally managed to hear well with assistive technologies couldn’t hear well; this was due in part to lips being obscured but a reduction of the sensitivity of hearing aid microphones brought about by social distancing, as well as sound distortion leading to an additional loss of speech intelligibility . These practical aspects of a public health need, led to societal change which was disabling for many people. This was augmented by systematic governmental lack of understanding, or even empathy, for those with additional communication needs. An example was seen when the English government's Covid 19 daily briefings failed to provide interpreters for British Sign Language (BSL) users, a move that was later deemed to be unlawful. Some people with hearing loss have described how the pandemic provided opportunities for improved inclusion and communication, with the accepted wider use of video conferencing and captioning technologies, as well as not having to feel anxious ‘having to hear’ people in social situations.
The Human Rights disability model is where disability rights sit within other intersectional identities (race, gender, LGBT+ and socio-economic factors), a shared humanity and respect for differences and dignity. The Humans rights model of disability "recognizes that disability is a natural part of human diversity that must be respected and supported in all its forms. People with disability have the same rights as everyone else in society,” and disability “must not be used as an excuse to deny or restrict people's rights.” 
This sits alongside Differentiated experiences where you get to know a person in respect to their personal experience, impairment, intersectional identities, and life lived. This seems a more equitable way to view all people and moves to a world view that does not judge. Surely a healthier way to live and view life. The theories of equality, equity and intersectionality will be covered in more depth in a future blog post.
There is an informative ‘understanding disability’ chapter in Sarah Bell et al 2022 publication, Disability, Landscapes and Nature: Re-Storying Landscapes for Social Inclusion; that explores these ideas in more depth in the context of designing, managing and interpreting disability inclusive and multi-sensory nature experiences.
Frances Ryan  discusses the trend for disability campaigners to describe non-disabled people as the “not yet disabled”, this addresses the belief that ill health will only hit other people and instead acknowledging that it can hit anyone of us, at any time... bad luck could mean that we can become too ill to work and the importance of an effective welfare state to maintain a safety net.
What I find fascinating at this stage is that the word ‘enabled’ is a word that keeps popping up in my work on Rewilding, and it appears in the Zoological Society of London (ZSL) recent 'Rewilding our cities' report ; where rewilding is nature led but human enabled. This is co-incidental but there are parallels with letting landscapes be ‘less normalised’ and more ‘self-willed’. The idea of a continuum for rewilding where a system can move both ways from a more formal human constructed green space to a wilder less restricted ecosystem that has the capacity to deliver benefits to both nature and human health and wellbeing. Here the discussion of ‘reciprocity’ sits at the heart of my current thinking... and parallels with disability modelling...
The paradigms of disability are complex, and I am hoping to grapple with them further as I proceed in my research… No doubt over the next 4 years I may well look back at this blog post and cringe at my current limited knowledge...The problem with models is that we try to ‘shoe-horn’ people’s lived experiences into a framework of adherence; assumptions are made, complexity is simplified, and nuance is lost. The reality in many cases is somewhat different.
So how do I currently feel about my own hearing loss? As someone who has always sat on the edge of communities, neither Deaf nor Hearing... wearer of hearing aids... but relatively small inconspicuous ones... reader of lips...would I class myself as ‘deaf enough’? As an Audiologist there was always a pressure to be seen to be hearing well... if I couldn’t hear well, what did that say about the capabilities of the hearing aids I was prescribing, that were after all marketed to be the ‘saviour of all your hearing woes!’ As Mat Fraser declares in his Radio 4 “What if everyone was disabled?” programme, that he “would “deny” his own disability … reject the label” and he was “hiding in the 'disability closet'”. Do I identify as being disabled? Certainly, leaving the soundproofed rooms behind where communication was a doddle; becoming a Mum has led to many more challenging hearing situations, noisy school halls, chaotic chats at the school gates, with the obscuring of faces with masks during Covid 19 and not having to socialise; and the relief of a previously unacknowledged stress of hearing at novel social situations... to be honest, at the moment I really don’t know. Maybe this PhD will not only reveal insights into how the lives of disabled people are influenced by urban greening and the potential social impacts of green gentrification... just maybe it will lead to a broader understanding of myself.
Writer and activist Eli Clare sums my feelings up perfectly in the wonderful book, Brilliant Imperfection:
“I walk, thinking not of concepts, but of beings... Just over the rise is the illogic of natural and unnatural, normal and abnormal. Just over the rise, we wrestle with loss and desire, promise and injustice.... Just over the rise we need to choose between monocultures and biodiversities, eradication and uncontainable flourishing... This little pocket of prairie is not a return to the past nor a promise to a future, although it may hold glimmers of both. Rather it is an ecosystem in transition from cornfield to tallgrass, summer to winter.... I feel... my own heart beating, imperfect and brilliant.”