The Lived Experience for Ourselves to Ourselves

In the this week’s ILMI E-Bulletin, Peter Kearns will follow-on from his previous article on the power of language by exploring how we use the phrase ‘Lived Experience of Disability’. Peter identifies how we can own the phrase more as a strong piece of terminology rather than just a flippant phrase, and as part of our social model led language. 

Social model informed use of language enables and empowers our knowledge as a national DPO. At the heart of Peter’s ILMI E-Bulletin article lies a question: is there anything to be gained by identifying as a disabled person within ‘The’ Lived Experience of Disability?

The term Lived Experience describes the first-hand accounts and impressions of living as a member a minority or oppressed group, such as disabled people. Some Lived Experience promoters would state that you cannot argue against any type of lived experience and you should listen and not question the particular minority individual telling their lived experiences. Yet, many disabled activists would agree that many disabled people lived experience tales are often showing prominent medical model narratives. These unquestioned medical model lived experiences are often required to internalise the values which tell the disabled adult that they are inferior or special or brave. 

On a very basic level, the Lived Experience of Impairment, and related impairment labels, is an individual experience of physical, mental and well-being and sensory conditions. The disabled person’s narrative can be either a medical or social model Lived Experience. This week’s spring ILMI article will set-out to argue that the Lived Experience of Disability should be concerned with social model informed societal and cultural identity experiences. Therefore, this article is proudly saying that Lived Experience of Disability should fundamentally not be a flippant catch-all phrase, but an official social model term emphasising rights and cultural identity by, for and with the Expert-of-the-Lived-Experience – the ‘Disabled Person’..

The 19th Century German disabled philosopher Friedriche Nietzsche argued, that to name something is to determine its essence – to put a ‘name’ on something is to say what it ‘is’. A few years after Neitzsche’s death from syphlis, a sexually transmitted disease (STD), 1930s Nazi’s twisted his thinking around the essence of language by naming German disabled people Dasein ohne Leben  ‘Existence-Without-Life’.

2021 Irish Disability Lived Experience discussions survive in a world where there are still power-plays by governments, doctors, charities and the non-disabled public. Non-disabled professionals and ‘experts’ still hold power over naming and labelling disabled peoples basic humanity: whether we should be born; how we should be ‘cured’, stabilized or institutionalised; and when we should be offered the ‘choice’ of Dying-with-Dignity euthanized.

Faced with non-disabled powerful medical model language and narratives that fluctuate between basic-existence, contempt, pity and  ‘SuperCrip’ inspirational ‘overcoming’, how should we argue the worth of social model rights, culture, critique and discourse in the Irish Lived Experience of Disability? Often media and cultural narratives frame the Lived Experience of Disability as a lifetime of ‘problems’, of ‘cures’ and peddling the ‘right’ to die, without the option of the right to live and celebrate our LifeCourse experiences. 

This ‘problem’ or medical model type Lived Experience narrative relates to a ‘victim’ existence stereotype, which objectifies disabled people as helpless persons deserving of pity. It implies that disability can only be viewed as a condition and impairment label narrative that disabled people suffer from. We need to be provided for, cared for, ‘cured’, stabilized by medications and protected. In doing so, the medical model lived experience stereotype oppresses and dis-empowers, and makes disabled people seem to be only valued by society as victims, ‘vulnerable’ and passive. 

Parallel to this victim, ‘vulnerable’ and passive narrative is the ‘hero’ or ‘SuperCrip’ lived experience stereotype. This non-disabled inspired narrative ignores the lived reality of disabled people who struggle constantly with oppressive challenges such as finding a wheelchair accessible bus and genuine employment. It also implies that a disabled person only deserves respect if she can overcome her impairment and perform extraordinary SuperCrip acts.

Identity is certainly not about being trapped into characterisations of ‘victim’ or ‘SuperCrip Hero’. The Lived Experience of Disability is fundamentally an issue of rights for and with the Expert-of-the-lived-experience celebrating and affirming their LifeCourse choices. One of the exciting things that happens within disability cultural exploration and engagement of the Lived Experience on ILMI’s blended weekly workshops is that people with quite different impairment labels and different LifeCourse experiences, but a common analysis of our oppressed situation, communicate something shared. 

Yet, impairment label and personal tragedy narratives influence the societal structure of an idea called Ableism. The Ableist term is about identifying that discrimination and prejudice against disabled people is based on the belief that so-called ‘normal’ life’s are better and superior. At its heart, Ableism is rooted in the assumption that disabled people require ‘fixing’ and defines people by their impairment label led lived experiences. Ableism is very much evident within medical model Lived Experience stories and narratives. Such Ableist discourses have impacted on, and are continually resisted by, disabled activists in terms of how embodiment is related to rights and a proud cultural identity.  

With this in mind, can an Irish social model informed Lived Experience of Disability indicate that disabled embodiment is produced and experienced within a national and international non-disabled Ableist context? 

Does the Lived Experience medical model charity gaze help to signify impaired bodies at the expense of the recognition of disabled identity of rights and cultural pride? 

Below is a not an exhausted compare and contrast list of bullet-points of how the medical and social models differ on how the Lived Experience can be proofed. The two lists are confidently binary in nature, that is, they are either medical model or social model informed Lived Experiences. The binary nature of the medical and social models must be articulated as an effective proofing of the term ‘Lived Experience’. It should be a required proofing practice in social policy formation and as a deconstructing approach to Irish state and community Ableism. Proofing the Lived Experience through the lens of both models can lead to the appreciation of pride values of a disabled identity, plus a politics of recognition required for rights and cultural identity.

Recognising the Ableist politics of a Medical Model LIVED EXPERIENCE:

  • ‘Problem’ of disability resides with the response to impairment stories overshadowing an individual. 
  • The medical model lived experience and narrative is concerned with an individual’s ‘lack of ability’ to carry out ‘normal’ activities.   
  • The medical model lived experience ‘Solution’ is about curing and stabilising the impairment and changing the story or ‘tale’ individual, the victim.
  • Ableist Intersectionality in the medical model is about having or ‘suffering’ two or more impairment labels; the impairment labels overshadow class, gender, sexual preference, ethnicity, etc.
  • The medical model lived experience emphasises the power of Ableist politics, discussion and discourse – to speak or write or communicate with power and authoritatively about a topic. Such discourse perfects the idea that the disabled person’s body not only behaves like its prescribed medical diagnostic label, but also is seen to perform its own set of ‘problem’ constraints, restrictions and label regulations. 

The above is also an Ableist personal tragedy discourse that can be seen as the cultural and attitudinal materialisation of the medical model Lived Experience. This type of Lived Experience of Disability discourse relies on the pathetic victim, the Super-‘Crip’, the monstrosity, the burden, the scrounger and the object of non-disabled comedy. 

ILMI supporter and 2019 AGM guest speaker Dr Colin Cameron proclaims to his Irish post-grad students that Disability in the social model is not so much something people with impairments have but is more about something they do. It is something produced performatively – the power of language to effect change in the world. The word Disability is constructed through multiple acts of disabling practice that inform lived experience narratives. The word, or term, Disability in the social model is similar to the concept of how the word/term Gender is constructed by capitalist Society. 

The below bullet-points would suggest that the social model Lived Experience of Disability reflects Colin’s proclamation that Disability is not an impairment or medicalized property or the essence of disabled people or their bodies, but a transforming effect of ideas and practices. 

Social Model LIVED EXPERIENCES:

  • ‘Problem’ of disability resides within the environment and Society’s culture – in which disabled people tell or show their lived experience of physical, social, political and attitudinal barriers. And a ‘Solution’ is to alter the environments by listening and hearing disabled peoples social model directed Lived Experience and cultural identity stories.
  • Capacity builds disabled people to effectively choose to be in the mainstream and own the means of process and product of showing and telling their lived experience. We get to own the value of the term Lived Experience of Disability, rather than just the ‘costs’.
  • The social model of disability shows how disability is the result of discrimination by mainstream society – society creates our ‘costs’. Disabled people and their Lived Experience stories and narratives are excluded (disabled) by ‘expert’ and ‘professional’ structures, policies and practices at every level of Society.
  • The medical model Lived Experience of disability is expert and professional led and discriminates against disabled people as experts-by-experience, sometimes actively and often by ignoring disabled people.
  • Mainstreaming the social model Lived Experience is essential if we want to tackle the exclusion of Show and Tell by disabled people as activists and academics.
  • Social model Intersectionality informed Lived Experience is inevitably political: the narratives and stories should show the means of carrying out rights-based expressions with social and cultural transformation.  
  • Intersectionality informed Lived Experience of Disability is rich in ideas or ‘codes‘. There will be a multiplicity of meanings embedded in the juxtapositions of relationship or links, such as class, gender, ethnicity, sexuality and art, drama or creative writing with Emancipatory led Intersectionality and advocacy.  It has empowered many disabled people in understanding their lived experience as oppression.

A social model informed communication of the Lived Experience could be seen to be breaking through the idea, presented to disabled people by some of the medical profession and disability charities in particular, that our situations are different and unrelated. 

Under the social model Lived Experience disabled people come together not as the blind or the deaf or the epileptic, or the bi-polars, or the spastic or the arthritic impairment based groupings, but as disabled people and activists and body-owning corporeal-cultural enablers. 

With a social model led Lived Experience, the structures of society are where the problem lies and not with the disabled person’s Ableist and medical model personal tragedy ‘problem’ body.

This is why the Social Model disabled persons independent ownership of their body or corporeal-narrative in the Lived Experience is revolutionary in reframing disability. A perceived-impairment can be a real feature of someone’s existence, but disability medical model narratives are imposed on disabled people by society, and cultural representative barriers – once named and recognised – can be overcome through engagement with a disability equality Lived Experience Affirmation and pride.

The development of the Lived Experience phrase or term, from a disability equality perspective, is related to the thinking that even if the social model was put into practice by a non-disabled Society and all the barriers were removed to give equal access to employment, inclusive education, public transport, housing, leisure, information, etc., etc., it would still be possible for Ableist impairment narratives to be seen as a personal tragedy. Disabled people would ultimately be still stuck in the medical model Lived Experience of being regarded and treated as victims of misfortune.

An Affirmative social model Lived Experience approach could argue that taking on a disabled identity necessitates involving oneself in acts of cultural transgression. The Affirmative social model Lived Experience is also about making assertions that display both the right to be different and the everyday humankind ordinariness of difference. Such an Affirmative Lived Experience also involves making and constructing positive-biased political and cultural decisions. It also entails affirmative meanings about the embodied experience of impairment and rejection of contemporary media pressures to define the ‘self’ as a victim of impairment label narratives. It is suggesting that disabled people, and especially disabled ‘Activists’, have a responsibility to talk about impairment and everyday Lived Experience of disability. 

The everyday Lived Experience of disability contexts of self-understanding is shaped both by social structural relations of inequality and unique individual experiences of Intersectionality and impairment. In ‘CripComing-Out’ and claiming identity as a disabled ‘Activist’, people with impairments, or perceived-impairments, not only subvert dominant medical and charity model disability discourses but change the very meaning of the word or term ‘disability’ in communicating the Lived Experience.

UK feminist disability activist and academic Carol Thomas has noted that a politics of disability lived experience identity is “fundamentally bound up with having an impaired body” (where impairment is recognised as a fixed characteristic or label narrative) as well as being disabled (seen as socially constructed difference). Sligo St. Angela’s NUIG College Disability Equality Course lecturer and UK activist Dr Colin Cameron says that to “say I am disabled is not to say I have an impairment” but is to make a statement about the situation of people with impairments and designated ‘labels’ in a disabling society. Furthermore, to say I am disabled collectively with other disabled people as an expression of anger turns this into a statement of pride“ (Disability Studies: A student guide, 2014). 

As most of the €2.2 billion annual state funded Irish disability sector derives its use of the phrase Lived Experience mainly from a medical model history, they judge according to the criteria of what is available – the Ableist narrative. The role of the disability ‘Activist’ is to facilitate emancipatory cultural and political recognition that organise, educate, inform, influence and incite disabled people into action alongside a social model led Lived Experience rights and cultural expression.

The disability ‘Activist’ facilitates the participating disabled person to discover that which they carry within them, both individually and, more importantly, as a collective Lived Experience. The process should be about coming to know through dialogue with disabled people the lived experience expression of both their objective medical model situation and their awareness of that situation and its collective social model led transformation.

The decoding or deconstruction of medical model oppressive stories and their personal tragedy Lived Experience narratives requires the activist and their DPOs to move from the abstract to a social model transformation of mutually recognised disabling barriers within the Lived Experience narrative. The Activist and her/his act of emancipatory lived experiences processes and products facilitate political and cultural discourse, i.e. thinking and expression as a form of Lived Experience Action. Again, as said above, the disability equality informed ‘thinking-action’ facilitates the participating disabled person to discover that which they carry within them, both individually and, more importantly, as a disability lived experience informed DPO collective, such as ILMI

Collectivism and disability activism is very much about being visible and troublesome…. and controversial, with political themes and usually sexually charged imagery and narratives harvested from the Lived Experience. Since the establishment of ILMI in 2018, Irish DPOs main thrust with disability activism and the lived experience is to capacity build and ensure that disabled people explore identity and speak up and out for themselves – to themselves. A future use of ‘The’ Lived Experience of Disability should encourage this transformation with respect to body and impairment narratives, as well as transforming social systems and structures. 

The way we use language, such as the social model term disabled people, in The Lived Experience of Disability it can only encourage rights, cultural, political and identity transformation. It is an important part of the narrative-way that together we construct shared Lived Experience understandings and expectations about disabled people and the way we relate to and improve what it is to be human.