Language and Framing: talking about what we mean when we talk about “disability”
The language we use is influenced by what we know (or think we know) but it also influences how we think. Psychologists use the term “frames” to describe that the way that we think and the language we use influences our beliefs and our behaviours. For example, the term “disability” in Ireland is almost exclusively located in the medical / charity model of disability, which has massive impacts on how disabled people view themselves and how society views and treats disabled people. For one, it often means that people with lived experience of the ‘mental health’ label and related perceived impairment labels often do not identify as disabled which has impacts on how the disability rights movement can build solidarity, shared experience and build campaigns based on collective shared experiences and promote values consistent with the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).
In this article, I want to explore the models of disability and propose that a shared understanding of the social model of disability is vital to build collective approaches to challenge out-dated medicalised approaches to the real pain and distress people are experiencing.
Emotional and mental distress and the medical model of disability
The medical / charity model never recognises the rights of disabled people and assumes that disabled people need to be ‘looked after’ or ‘cared for’. The medical/charity model has many non-disabled dis-empowering professionals make decisions for disabled people without appropriate systems and structures for capacity built consultation or dialogue. People informed by the medical / charity model, being focused on disabled people’s impairments, use the term ‘people with disabilities’ The medical / charity model individualises the term disability ; to equate with an individuals prescribed impairment label and impairment. It encourages the idea that people are disabled by their impairments or perceived differences to some undefined society norm. Historically it is almost always linked with a capitalist notion of a “productive-unit” citizen. The medical model constantly focuses on people’s impairments from a western professional medical perspective. This medical model paradigm of thinking proposes the person needs to be ‘fixed’, to be ‘cured’, to return them to an acceptable level of normality in mind and body.
The medical model has sub-headings such as the charity model, where disabled people are marketed as vulnerable passive objects of care that must be paid for by normal duty-of-care fearful citizens and multi-billion euro private organisations. Frequently, the medical / charity approach to impairment still looks at what is ‘wrong’ with the person and what in their best interest and not what the person effectively requires to access pathways towards their individual lifecourse wishes and preferences. It creates low expectations and leads to people losing independence, choice and control in their own lives.
Emotional and mental distress are almost exclusively viewed in Ireland through the lens of the biopsychosocial model. The biopsychosocial model is predominantly an epidemiology (disease) model that looks at the interconnection between biology, psychology, and socio-environmental factors. Ultimately, as a medical model, it predominately looks at impairments relating to emotional and mental distress as being something that is “wrong” with the individual that needs to be treated, almost exclusively through medical interventions. Extreme forms of this medical approach can lead to refusal to engage with people’s lived experience and life history and can have medical professionals remove autonomy from people, including forced detention and denial of basic human rights.
Most discussions in Ireland around emotional distress use the term “mental health”. A term that is assumed to be sensitive and neutral, “mental health” is actually a loaded statement. People who experience emotional and mental distress are not sick and do not suffer from an illness. Taking a social model of disability we need to recognise that using terms like “mental health” medicalises and individualises people’s emotional responses to societal pressures. Emotional distress is not an individual medical issue but a social issue and it cannot be “treated” as a medical condition.
From a social model of disability, we should move towards discussions around people who are experiencing emotional and mental distress as something that is very real, and that is often an understandable response to part or present traumas, grief or societal pressures – and extreme challenges that people face. We need to move from systems that ask “what is wrong with you” to asking “what has happened to you” or “what do you need”.
Many instances where people experience emotional distress result from societal structures and pressures which are ultimately outside any individuals’ control, and cannot be “treated” medically or “cured” by pharmacology or “wellness” practices. These include issues relating to employment (meaningful work), poverty, status and respect, loss of identity and meaning, lack of meaningful connection with other people, a loss, of future opportunities. Many people have experienced extremely traumatic events in their lives.
We need to provide an alternative analysis based on lived experience that recognises the pain people experience as real and recognising that what causes emotional distress is located in what has happened to people and how people have responded to trauma and threats to their identity.
The supports for people who experience emotional distress is multifaceted, but by individualising the societal conditions that create distress, the idea that by adopting a medical approach to mental health, that such issues can be “cured”, needs to be challenged. If someone experiences depression due to the complex interaction between low-paid unfulfilling work, the challenges of trying to raise a family on minimum wage, the lack of social spaces for interaction based on an inaccessible environment or lack of PA hours, lack of meaningful relationships due to social isolation, or past emotional trauma, cannot be “cured” by medical, institutional or pharmacological approaches.
People in distress and in pain need supports that give them safety and it needs to be person-centred which meets specific needs (not a one size fits all medical / institutional approach) and should reflect their aspirations for life: a sense of being empowered, in control, with improved self-belief, with relationships that lead to fulfilment, with the opportunities in education, employment and socialising that lead to hope in the future for a life of possibilities.
How disability is framed has hugely deleterious effects on disabled people, regardless of their impairment-based label. The medical model will always invest in “disability services” that remove agency from disabled people and build systems that segregate and deny disabled people choices of where they live and who with, the right to have families, to have jobs and to participate in society as equals. This is especially crucial when there are calls for “greater investment in services”. It is almost a given that every political party in Ireland will include a mantra about “investing in mental health services” in their pre-budget submission. But there never is a discussion about whether these “services” will be about supports that people need to live their lives as equals in an inclusive society, or whether they are out-dated medicalised “services” that deny disabled people their agency based on diagnostic criteria that medicalise the emotional and mental distress that they are experiencing.
There are no magic pills that will “cure” the emotional pain and distress for a community facing deprivation, racism or marginalisation.
What is the social model of disability?
The social model looks at how society is structured and how it disables people. It is not a society led medical model response to a person’s impairment or perceived impairment labels. It is about what barriers that exist. Barriers such as medicalised policy development and a lack of access or lack of supports that prevent people from participating in society as equals with choice and control over their own lives. In this model it is society that disables people from achieving their hopes and dreams, not a person’s impairment. The social model informs and leads all aspects of the work of Independent Living Movement Ireland.
ILMI’s work is to develop policies and campaigns based on disabled people’s lived experiences in order to remove barriers that restrict life choices for disabled people. When barriers are removed, disabled people can be independent and equal in society, with choice and control over their own lives. Barriers are not just physical. Attitudes found in society, based on prejudice or stereotypes (also called “disablism”), also disable people from having equal opportunities to be part of society.
Disabled people developed the social model of disability because the traditional medical model did not explain their personal experience of disability or help to develop more inclusive ways of living. The social model of disability informs key International Conventions such as the UN Convention of the Rights of People with Disabilities (UNCRPD) and is in contrast to the “medical / charity model” of disability.
Emotional distress and the social model of disability
Discussions relating to emotional distress are often still stigmatised in society, albeit with greater understanding for the need for people to show greater awareness. Given the predominance of the medical / charity model of disability, many people assume that “disability” relates to physical, sensory or intellectual impairments. Many people who have had or do experience emotional distress view disability through a physical, sensory or intellectual (medical) impairment lens and thus do not view themselves as “disabled”. This is further exacerbated by the predominant medicalised ideology on emotional wellbeing (“mental health”) which often means that many people who experience issues relating to emotional distress do not view themselves as being “disabled”.
Taking a social model of disability and recognising that how society is structured to disempower people can connect disabled people and build solidarity, regardless of impairment. As the social model is grounded in principles of equality and social justice, it recognises the intersection between impairment and other identities and indeed, the intersection between impairments. For one, many disabled people with physical, sensory or intellectual impairments often suffer from emotional and mental distress based on their exclusion from society.
The medical approach assumes that professionals must “look after” people with impairment, removing control over their lives. It labels and stigmatises disabled people based on their impairments. A collective social model analysis of disability has the potential to generate a new focus to connect disabled people on a cross impairment basis, including people who have or do experience emotional distress, anxiety and depression.
Embracing a social model of disability recognises that impairments are part of the human condition and that diversity of ways of being alive should is the norm throughout history, but it is how society is structured that disables people from living the lives of their choosing. The capacity to think, decide and act on the basis of your desires freely and to be in control of all aspects of your life are the core tenets of the disability rights movement globally.
Thinking about how we talk about disability has huge implications in changing conversations about emotional and mental distress. It allows for spaces within Disabled Person’s Organisation (DPOs) to genuinely build solidarity among disabled people, regardless of impairment. It is also vital that people with lived experience of emotional and mental distress are welcomed and supported into these spaces and have their voices heard in those collective spaces. DPOs (Disabled Persons Organisations) such as ILMI are consistently challenging out-dated services that infantilise, segregate and control disabled people’s lives which are contrary to the principles of the UNCRPD. Given that Ireland will have its first examination by the CRPD Committee next year it is vital that collectively people with lived experience of emotional and mental distress are part of conversations to ensure their voices are heard, to identify the societal barriers that disable them and to identify and name the supports that are needed for a genuinely inclusive society where everyone, regardless of impairment, participates as equals.