DOI: 10.3726/9781918026054.003.0006
Older people who live with dual sensory impairment (DSI) are a largely invisible but rapidly growing population. Australia has no society for older people who don’t ‘see too good or hear too well’. While there is an absence of policies and a paucity of supports specifically targeting this isolating and complex disability, few seek the accounts of older people living with DSI to inform health and social discussion, policymaking and service provision. And so, a hermeneutical gap exists. This chapter outlines why we need to promote epistemic justice by including living experiences of older people with DSI, urging greater inclusion in protectionism, policies and practices as well as all social domains. So that policy making is informed and directed where it is most needed, we look at how to achieve this in practice. The lead author of this chapter is Annmaree Watharow, a researcher with lived experience of DSI.
Key words deafblindness, dual sensory impairment, lived experience, disability, policy, and ableism
The way we build knowledge, understand needs and create policies and services for older people living with dual sensory impairment (DSI) has to change. Article 1 of the Declaration of Human Rights states that ‘all persons are born free and equal in dignity and rights’ (UN, 1948). Further, the UNCRPD (UN, 2006) enshrines the right to access health and social care for all persons, irrespective of disability or difference. These conventions embed the right to protections and policies that support those living with disability, potentially allowing them to flourish at all life stages. However, for persons living with deafblindness or DSI, these protections and policies may prove inadequate due to the absence of a unique and distinct disability status in most jurisdictions. Also, a lack of visibility in society, poor data and the scarcity of lived experience accounts (Jaiswal et al., 2018) are impediments to equitable access to health and social care. So, our knowledge of those living with DSI is flawed and incomplete; these gaps, in turn, impact our policies. Failures of our knowledge production and elicitation processes create and perpetuate a lack of visibility and an absence of policies for older people living with DSI. They are fuelled, in part, by ageism, stigma and ableism. A lack of awareness of how the combination of hearing and vision loss impacts most domains of daily and social life means that those living with the losses believe them to be normal processes of ageing. There is a stigma associated with sensory loss/es that impacts disclosure and help-seeking (Dunsmore, 2022). The end self-fulfilling result is a gap in policies addressing the significant needs of this growing group and their families and carers.
Miranda Fricker’s (2007) account of epistemic injustices is used in this chapter to understand the lived experience of older persons with DSI and examine how the failure of the Australian Government and institutions to recognise these has devastating consequences. We have a global challenge, too (WFDB, 2018; 2023), so the failure to account for and acknowledge lived experiences means that DSI-aware policies to deliver support and resources are absent. Also, without attention to these gaps, existing services, already so inadequate, are about to be overwhelmed as the population continues to rapidly age.
Two Australian Royal Commissions into Aged Care Quality and Safety (2021) and into Violence, Abuse, Neglect and Exploitation of People with Disability (Commonwealth of Australia, 2023) have found that the absence of policy, and therefore support, have been harmful to older people with disability. Ageism has rendered the lived experiences of older people with DSI largely invisible to Australian policymakers. Perhaps the lack of a common identity – including the absence of a society or peak body solely for older people who ‘don’t see too well or hear too good’ – means that DSI and older age is not on the policy, protections and professional agenda.
The above-mentioned Australian Royal Commissions have also confirmed that the absence of voices of people with disability, and those of older people more generally, has contributed to the policy and service shortfalls and abuses. The voices of older people with disability are particularly absent in protections, policies, practices and research. This absence of lived experience voices – while being noted generally – is particularly evident for populations with DSI as Jaiswal et al. (2018) have noted in their literature review. Also affirming the lack of inclusion of older people with DSI broadly in protections, policies and practices is Wittich and Simcock’s article, which asks: are older people with deafblindness being left behind in these arenas? (2019). We (and they) answer yes. We contend these gaps and absences are significant epistemic injustices. This chapter aims to contribute to the scant literature applying concepts of epistemic injustice and lived experience insights to ageing with DSI and discuss the implications for policy and research.
If we look specifically at older people with sensory impairment, we acknowledge that globally, they are less visible, denied basic human rights and are positioned as passive and powerless in health and social care. The World Health Organization (WHO) global priority areas include hearing loss, low vision, rapidly ageing population and loneliness (World Health Organization, 2019; World Health Organization, 2021; World Health Organization, 2023; World Health Organization, 2023a). These all converge in one population group: older adults with DSI. In Australia (as noted earlier), policies that address the specific consequences of living with DSI are absent. In this chapter, we examine the reasons for the policy shortfalls that impact this growing marginalised group. We examine the unique and distinct condition of co-occurring hearing loss and low vision through its definition, context, data and heterogeneity. Then we uncover the impacts of DSI on the individual before gazing upon national and international policy shortfalls and absences. We discuss the framing of epistemic justice, injustice and types of epistemic injustice. We look at how older people with DSI are left out of research and policy and show that this makes life for them riskier and isolated. Finally, we look at the ‘hermeneutical wasteland’ and blueprint on how we might move beyond the status quo of epistemic gaps and policy absences for older people with DSI.
First, we need to understand what is DSI, or deafblindness as it is also known. Then we must contextualise ageing with sensory losses to understand why there is an urgent and growing need to address the epistemic gaps and policy absences.
DSI, deafblindness, dual sensory loss are all common terminologies that describe the combination of hearing and vision loss or impairment such that one sense cannot compensate for the other. Many older people simply say, they ‘don’t see too good or hear too well’. They don’t get diagnosed, recognise or identify themselves as part of this group. Regardless of the presence – or absence – of terminology, recognition and identity, DSI is a unique and distinct disability (WFDB, 2018).
We use the Nordic definition and the accompanying explanatory notes which we summarise as:
Deafblindness is a distinct disability. Deafblindness is a combined vision and hearing disability. It limits activities of a person and restricts full participation in society to such a degree that society is required to facilitate specific services, environmental alterations and/or technology.
This definition has accompanying explanatory notes. In brief, the key complexities of life with DSI as drawn from the explanatory notes are:
1. Distinct and complex disability
2. Hard for each sense to compensate for the other
3. Time consuming
4. Energy draining
5. Information received in fragments
6. Activity limited
7. Participation reduced
8. Communication, access to information and mobility affected
9. Tactile sense critical as a conduit of information
10. Communication technology, assistive devices, interpreters and adaptations to the environment may be required
11. Despite the above, human assistance and support needed to provide access to information, mobility and safety
12. And that society is responsible for all support
What do we know about older people with DSI that might explain its obscured existence in Australian health and social care policies? Primarily, there is an attenuated knowledge platform on DSI generally in Australia and other countries, plus an even thinner knowledge base on older people with DSI. Despite its impacts on health and well-being, DSI remains under-recognised in policy, practice and service delivery (Lin, 2004; WFDB, 2023). Much of the research is missing lived experience voices, delimiting our knowledge about what older people with DSI want and what they need. With a rapidly ageing population, this lack of knowledge (and data) leaves society vastly underprepared, and older citizens profoundly under-recognised and significantly under-supported.
DSI prevalence globally across all age groups is estimated between 0.2% and 2%, with the majority of cases in older people (WFDB, 2018). Since DSI is not considered a unique and distinct disability by most countries, global data collection is also inadequate. These data shortfalls limit our understanding of DSI as a global disability. The available data in Australia is deficient: we know underdiagnosis, under-reporting and inaccessibility of forms means we are constantly undercounting people with DSI. The ageing population is evident in a data shift that shows 4:1000 incidence in 2013 (Dyke, 2013) and a rate of 8:1000 by 2018 (Australian Bureaus of Statistics [ABS, 2018]). This data means that at least 200,000 Australians live with DSI, most over the age of 65 years (Australian Institute of Health and Welfare, 2019a). We are waiting on the ABS Survey of Disability Aging and Carers (SDAC) data from 2022, set for release in July 2024, which may give a clearer view.
Schneider et al. (2012) noted that prevalence of DSI increased significantly with very old age to over one in four in those aged >80 years, a trajectory confirmed by Canadian longitudinal study data (Mick et al., 2021). But there is significant data invisibility around sensory loss/es due to hidden populations, including First Nations people, residents of aged care facilities, prisoners, homeless, those with other disability and comorbidities. Misattribution is common; for example, one impairment can be conflated with another such as hearing loss with cognitive decline, or the other condition such as intoxication when a person with low vision has difficulty mobilising safely. Note that there is also premature ageing for some of these populations where the difficulties of ageing start 15 years earlier; this includes early onset sensory loss/es. For example, Australian data indicate 66% of people over 60 years have hearing loss (House of Representatives Standing Committee on Health, Aged Care and Sport, 2017) and 6.5% of those 50 years or older have visual impairment (Foreman et al., 2016). However, among the Indigenous population, 82% of those 55 years or older have hearing loss (Australian Institute of Health and Welfare [AIHW, 2023]) and 13.6% of those over 40 years have visual impairment (AIHW, 2019), indicating both hearing and visual impairment present at higher rates and earlier onset. These ‘invisible’ populations mean the problem of DSI is far wider than available data suggests.
Heterogeneity is vast with diversity in age and order of onset, causation, categorisation and severity. Individuals have different resources and may have additional disability and comorbidities that complicate function and capacity.
There are six categories of older age adults with DSI, representing those ageing with DSI as well as those ageing into DSI (Wittich & Simcock, 2019; Watharow & Dunsmore, 2024). These categories are:
1. Congenitally deafblind (both hearing loss and vision loss present from birth or an early prelingual age).
2. Congenital hearing loss (non-signer) with acquired vision loss.
3. Congenital hearing loss (signer) with acquired vison loss, meaning that the principal mode of communication is compromised. This adds a cultural and linguistic diversity intersection.
4. Congenital vision loss with acquired hearing loss.
5. Acquired hearing and vision loss (this is the largest category). Causation here are common age-related conditions such as age-related macular degeneration, cataract, glaucoma and presbycusis (age-related hearing changes) (Schneider et al., 2012).
6. Premature ageing conditions such as the rare Huntingdon-Gilford progeric syndromes (Lamis, 2022), or the more common early ageing associated with intersectional and social disadvantage (mentioned earlier).
The above categorisations rely on individuals ‘knowing’ they have DSI. However, a great many fall into a category of ‘not knowing’ or misattributing hearing loss and low vision to old age. One older person encapsulates this in a verbatim testimony, saying:
I can’t walk into a room. I see nothing and I can’t find my seat and I can’t recognise people. It’s really hard to listen. No, not hard to listen but to hear. I try to work it out, but none of it makes any sense, you see. I know it’s just old age, but I’m finding it all difficult.
You can only be counted in data if you understand your situation, have a diagnosis or label and are asked about your sight and hearing in accessible ways. Older people with DSI can find it challenging to describe and define their sensory impairment, often viewing the losses separately (Dunsmore, 2022). This can hamper recognition of their DSI condition and diminish understanding and articulation of the complex and synergistic consequences brought on by the combined impairment. Watharow (2021) noted, ‘Paradoxically, I am deafer now that I am blind. Diminution of visual cues and the impossibility of lip reading what cannot be seen increases my confusion in communication encounters’ (p. 172).
There is wide heterogeneity in the severity of DSI, with combinations ranging from mild to complete sensory loss in either or both senses. Most have some residual hearing and/or vision which may be harnessed with accessibility technology, for example, hearing aid or low vison aids. Diagnostic metrics don’t necessarily correspond to individual function and capacity as someone who has lived a long time with a sensory loss/es may have strategies and adjustments that someone who is newly sensory deprived in older age may not (Lee & Ottowitz, 2020). Further complicating any assessment of ‘severity’ and function in older adults is the high rate of multiple disability and co-occurring conditions which can be as high as 75% (WFDB, 2018). How an individual functions with their sensory loss/es depends on so many factors (as alluded to above).
The World Federation of the Deafblind positions DSI as a complex condition that has a major influence on health and well-being of individuals, families and carers (2018). These include:
• Increased risk of functional decline as one sense cannot compensate for the other (Davidson & Guthrie, 2019).
• Impairment to an ability to complete activities of daily living and more complex instrumental activities of daily living (Brennan & Bally, 2007; Brennan et al., 2005; Guthrie et al., 2018; Heine & Browning, 2015). These complexities, in turn, potentially reduce a person’s ability to age-in-place.
• Risk of social disengagement and increased dependency (Hajek & König, 2020; Jaiswal et al., 2018, 2020; Viljanen et al., 2013).
• Increased falls (Takekawa et al., 2024).
• Increased delirium (Morandi et al., 2019), visual hallucinations (Pang, 2015).
• Increased incidence of anxiety and/or depression (Bodsworth et al., 2011).
• Reduced access to healthcare (Dunsmore, 2022).
• Poor hospital experiences (Watharow, 2024; Takahashi, 2019).
• Limited access to services, information and social support that are DSI aware (Takahashi, 2019).
• ‘Left behind’ in disaster responses (Takayama et al., 2022).
• A complex relationship with cognitive decline (Maharani et al., 2020) and increased morbidity and mortality (Gopinath et al., 2013).
• For society, there are increased health and social care costs: age-related sensory (hearing and vision) loss is a significant health cost in Australia (AIHW, 2021) and in the United States (Huddle et al., 2016).
It is useful to define what we mean by policies. We use the WHO ICF (International Classification of Functioning, Disability and Health) terminology and definitions (World Health Organization, 2021a, p. 200); or WHO Family of International Classifications Foundation browser (World Health Organization, n.d.).
Policies constituted by rules, regulations, conventions, and standards established by governments at the local, regional, national, and international levels, or by other recognized authorities. Policies govern and regulate the systems that organize, control, and monitor services, structured programmes, and operations in various sectors of society.
Then this means that policies are integral to the identification of social and healthcare needs and the services that deliver necessary supports for older people with DSI.
International policies on ageing often fail to fully account for the unique complexities of ageing with a single sensory impairment (SSI) or DSI. These include the WHO Public health framework and Integrated Care for Older People (ICOPE). An international group are proposing a new framework for ageing with sensory loss to redress these deficiencies and accommodate the adjustments people with sensory loss can make that alters the starting points and trajectories of ageing as seen in these policy frameworks (Xiong et al., 2024; Witich et al., 2024). Another significant international policy and practice gaps has been the absence of a distinct core set of parameters for deafblindness-DSI within the WHO ICF (Billiet et al., 2021; Moeller, 2003). A core set ‘facilitates the description of functioning by providing lists of essential categories that are relevant for specific health conditions and healthcare contexts’. This lack of recognition and inclusion of deafblindenss in a landmark health and rehabilitation policy framing means that the complexities and priorities around diversity in sensory function and residuals, psycho-emotional health needs and the barriers people with combined hearing and vision loss face are not accounted for in assessments and support provisions. It is as if people with DSI generally are invisible. Work is beginning on developing a tailored ICF Core Set for deafblindness; this policy and practice iteration will result in more targeted healthcare, rehabilitation and support services that actually address the needs of people with DSI (Wittich et al., 2024).
Only one-third of countries have protections and policies that recognize deafblindness-DSI as a unique and distinct disability (WFDB, 2018). In England, for example, the Care Act (2014) regulations stated that there’s a requirement for specialist expertise for individuals with DSI: 6.(1) – an assessment which relates to an individual who is deafblind must be carried out by a person who has specific training and expertise relating to individuals who are deafblind.
There is currently no Australian correlation with the England Care Act but there is within the European Union (EU). In the EU, the Declaration on the rights of deafblind people (2004) states that ‘deafblindness is a distinct disability of combined sight and hearing loss such that access to information, communication and orientation mobility are compromised’. Deafblind individuals therefore ‘need specific support provided by people with specialist knowledge’ (European Parliament, 2004).
These legislative directives have meant that protections, policies and practices attuned to the specific needs of those with DSI, including older people, are created and enacted. Member countries are required to have dedicated supports and ensure that support personnel are credentialled with specific skills to address the complexities of living with DSI.
Australia doesn’t yet recognise DSI or deafblindness as a unique and distinct disability. It has taken several years of advocacy to the National Disability Insurance Scheme (NDIS) to get their assessments to include deafblindness or DSI. Author one was made to ‘choose’ which disability was the first disability – deafness or blindness – as there was no drop-down box for DSI or deafblindness until 2024. DSI for older people is situated at the intersection of disability and ageing. In Australia, the aged care and disability governmental policymakers fail to generate distinct recognition and policies. This, in turn, means funding, services and supports are missing. People with DSI may be served by single sense services that aren’t funded or aware of the complex needs of the combination. Dammeyer (2015) calls this ‘1 + 1 = 3’, meaning that the impact is multiplicative, not additive.
There is a general lack of lived experience voices from younger and older Australians with DSI. This is highlighted by the recent defunding by the Department of Social Services, of Deafblind Australia, the peak advocacy body for people with hearing and vision loss through all life stages. This further delimits the voices calling for inclusion in policy codesign and implementation. Older people are often excluded from policies and supports for younger people, such as the NDIS where people over the age of 65 at entry cannot apply for support. In a recent review ‘Getting the NDIS Bill back on track’ stakeholders’ feedback, strategies for older people with disability (including DSI) are conspicuously absent from proposals (AFDO, 2024). This highlights the need for the voices of older people with disability, including DSI, in the advocacy and policymaking spaces. The need for sustained, permanent funding of peak bodies with DSI lived experience representatives is a prerequisite to ensure no policymaking ‘without us’.
The Royal Commission into Aged Care and Safety condemned the decades-long lack of investment by Government and found older people underserved, often unsafe with substandard systems of care (2021). We contend that policies (and knowledge, data and testimony of lived experience) are lacking in Australia to identify and meet the needs of older adults with DSI. The absence of policies perpetuates the lack of visibility and knowledge of marginalised and often hidden groups living with DSI. This absence of voices from those with DSI to inform policies and practices is a breach of epistemic or knowledge building justice.
Our framework for this chapter is based on Fricker’s work Epistemic Injustice: Power and the Ethics of Knowing (Fricker, 2007). Additionally, we acknowledge that we cannot have true knowledge building justice if we aren’t eliciting lived experiences in socially just ways. This means intentionally seeking out older people to relate their stories and experiences. This also means providing accessibility support and access to information alongside valuing these experiential outputs. In turn, this means providing the budgets for the increased time needed to gain the insights that will inform research and drive policy creation and iteration. This knowledge is discoverable in the experiences of marginalised individuals.
In Australia, Roy et al. (2018, p. 71) noted, ‘here is a paucity of research and guidance on good practice for engaging with people who are Deafblind in policy development and the codesign of services and service systems’. They further stated that reducing power disparities, understanding sameness and diversity and deploying specialist knowledge is imperative, but including the voices of lived experience with sensory losses is non-negotiable in all research and policy development (Roy et al., 2018, p. 71.)
People are experts on their own lived experience, and so can identify and state what is needed, what works and what doesn’t in order for social justice measures to have power. In this way, knowledge building, that is, epistemology, is inextricably linked to social justice and inclusion. Epistemic insights are also essential to determining if our social and health institutions are indeed providing the services the community requires and of a quality that the community expects.
Truly inclusive knowledge building practices must aim to tackle the current inherent epistemic injustices. If data collection methods exclude certain populations, this data will perpetuate forms of epistemic injustices through its silencing of particular perspectives.
‘Epistemic injustice’ refers to Fricker’s concept of the wrong done to somebody in their capacity as a holder of knowledge and includes both hermeneutical and testimonial injustice (Fricker, 2007, p. 1). Epistemic injustice occurs when the seekers of knowledge fail to locate and make legible the testimonies of the historically marginalised by discriminating, devaluing, ignoring or erasing the knowledge that is held by these knowers. Fricker’s framing positions the knower as the centre of knowledge, and any failure to seek, value and make visible this knowledge constitutes an epistemic injustice being done to that knower. Data identification, collection and evaluation methods that are used to inform policies in disability older care, in their current forms exclude, wrongly interpret or fail to reach the intended people. Researchers can devalue and dismiss testimonies of marginalised groups and individuals, based on ableist and discriminatory attitudes and beliefs about trustworthiness. Testimonies of proxies or researcher interpretations may prevail in the place of accounts of lived experiences of disability and ageing.
Fricker’s 2007 work is having a renaissance in research, especially research around disability, inclusion and the concerns of many marginalised groups. For example:
• McKinnon (2019) – gaslighting as epistemic injustice
• CohenMiller & Boivin (2021) – criminal justice system and young offenders’ legal literacy
• Groot (B) (2022) – health and ethics of care
• Isham et al. (2019) – female family carer violence
There are three typologies of epistemic injustices – testimonial, hermeneutical and co-occurrent. A testimonial injustice occurs when the credibility of a speaker’s knowledge is undermined by the hearer due to the hearer’s possession of a prejudicial stereotype about the identity of the speaker (Fricker, 2007, p. 1). In such cases, the speaker’s testimony, perhaps their explication of pain or disenfranchisement, may be either distrusted or altogether ignored by the hearer due to, for example, age, gender or perceived ability of the speaker.
An older person’s testimony is often regarded as less believable and less competent. Health and social carers and researchers create judgements about credibility, irrespective of older adults’ capacity or actual ability. Ageism is commonplace and discriminatory stereotyping alongside ageist attitudes further marginalises older people and their lived experiences (Allen et al., 2022).
Hermeneutical injustices occur when an individual or group of individuals are unable to render their experiences intelligible to either themselves or others due to the existence of systemic prejudices (or lacunas) in the collective hermeneutical resources (Fricker 2007, p. 154). This may be due to a lack of appropriate terminology or because of the individual’s context denying them insight as to the existence of such terminology. Fricker’s original example explores the case of a woman experiencing workplace sexual harassment prior to the creation of the concept ‘sexual harassment’. In such a case, this woman is unable to employ this term as a means to render her experience intelligible to both her and others.
In the case of older people living with DSI, instances of testimonial and hermeneutical injustices can and mostly do co-occur in myriad ways. A testimonial injustice occurs, for example, when the epistemic insights of those living with DSI are inadequately sought and received in healthcare research settings (Watharow et al., 2024). Systemic, hermeneutical injustices occur among this population due to prejudices in the collective hermeneutical resources such as contemporary health policies, which diminish or altogether neglect the harms and difficulties faced by those ageing with and into DSI. Without this and other forms of sufficient recognition, people with DSI are unable to achieve the self and collective acknowledgement necessary to resolve their susceptibility to different types of injustice (Fricker, 2007, p. 156).
When considering the epistemic wrongs done to older people living with DSI by policy absences, we need to examine the role of testimonial and hermeneutical injustices. They are concurrent in the DSI group. The prejudices and stereotypes exist alongside the lack of hermeneutical resources for older people to navigate what is going on, within them as well as around them.
This lack of awareness of their sensory losses being more than ‘just old age’ means that there is no identity with a condition nor a knowledge of the supports available. These hermeneutical lacunae are not limited to individuals, but also extend to a lack of awareness, insight and interest from community, health and social care institutions, policymakers and governments.
In the pursuit of epistemic insights to inform protections, policies and research, the role of accessibility cannot be overstated. There is a lack of research specifically around best practice for accessibility provision in older people with DSI. Roy et al.’s work centres around deafblind adults primarily under 65 years (2018). Lack of accessibility provisions and a disregard for the funds and time needed to gain insights perpetuates testimonial and hermeneutical injustices. We use Tichkosky’s (2011) definition of accessibility as a ‘complex form of perception that organises socio-political relations between people in social space’ (p. 9). If accessibility is provided, power imbalance is mitigated; if it’s not provided, then the knower is silenced or ignored by the more powerful. This perpetuates knowledge gaps and allows inadequate or unsafe systems to continue to flourish. The role of accessibility provision in promoting epistemic justice has been little explored, although it is alluded to in the final chapter of Fricker’s 2007 work. Fricker explains how differences in form and style of language and communication can contribute to hermeneutical injustices with voices being stifled or remaining silent.
Fricker writes, 17 years after her seminal book, more explicitly that failure to provide accessibility points to ‘the distinctive intelligibility disadvantage experienced by those who speak, write, and sign differently from what is expected/habitual in the context provided’ (Personal communication via email, Fricker, 10 November, 2023). Older people with sensory losses may therefore be hermeneutically marginalised by their needs for more time for communication exchanges, different lighting, alternate formats, assistive technology and face-to-face preferences. Fricker elaborates:
Belonging to a group whose expressive style (perhaps a distinctive way of signing, for instance) can be a form of hermeneutical marginalisation. And so, when that style is not sufficiently shared with those to whom one is hoping to communicate, that can result in an unfair deficit of intelligibility—a hermeneutical injustice.
Personal communication via email, Fricker 10 November, 2023
Researchers, policymakers and service providers are therefore required to intentionally prioritise accessibility (and the funds and time needed). Older people who don’t see too well or hear too good cannot compensate for one diminished sense by using the other. This means that for each individual, ways need to be explored that promote their access to information and ability to communicate their experiences and requisites. Without this intentionality and resourcing, hermeneutical injustices are perpetuated, data remains scant, policies inadequate and social institutions fail to meet community expectations.
Being seen, heard and included depends on being able to view the online surveys, hear the researchers’ questions and notice their lips and facial cues, navigate the online platform and understand what is being said, for example, in noisy focus groups. Giving informed consent may require a large print document or an explanation in a quiet room. For some, braille materials or tactile language support by interpreters are needed. Accessibility is not simply about technology and devices but relational: how we ask what is needed and how we provide that for each individual is key. How we recognise that we need to consider our own presentation and actions (Do we have an accent? Speak too quickly? Ask questions and give information while facing a laptop and not the person in front of us? to name a few). In lived experience-led DSI work, negotiation as to which communication mode suits everyone in the conversation best is necessary (e.g. Watharow & Mellifont, 2024). This should be a normalised practice where knowledge seekers and the expert knowers acquire an understanding of – and accommodate – one another’s specific communication and support needs.
This chapter establishes that older people with DSI are the expert knowers of their own conditions, circumstances and experiences, even if these are not nameable, sought, counted or valued. When the testimonies of particular individuals and communities are unsought, unheard or silenced, a wrong is done to both the expert knower and to the communities that would have benefited from their knowledge. In order to know and serve our society and its communities (including institutions, policies and services), we, researchers, policymakers, service providers and health and social care institutions must ensure that we construct knowledge with those knowers experiencing the individual institution’s research, policies and services (or lack thereof). Evaluating the performance of community systems designed to serve older people with DSI depends on direct testimony from those older individuals. As the Australian Royal Commission highlighted, the absence of lived experience knowledge informing and evaluating the social institutions and policies supposed to serve them are decades-long systemic failures that result in parlous states of care and actual harm for older adults, especially those living with disability. A wrong is also committed against broader society as its institutions, policies and systems remain unchecked, inefficient and uninformed by the perpetuation of not only epistemic injustices but exclusion from social life and shared decision-making in healthcare, for example.
Epistemic insights are vital in another capacity; the more lived experiences are heard and seen, the greater the community recognition of the existence of DSI as a distinct condition. Its complexities and challenges need not be endured without support. The stigma and ageism will be challenged. The greater that community awareness, the greater the epistemic power that can voice demand for policy recognition and redress. Fricker’s earlier example about sexual harassment illustrates this.
These gaps in epistemic insights represent lost opportunities to change the status quo, improving quality of life in those ageing with and into DSI and so also reducing health and social care costs. Huddle et al. (2016) and others have shown that better management of SSI and DSI would be fiscally efficient.
A hermeneutical lack of awareness centres around how sensory loss/es are not simply ‘unavoidable, un-remediable part of ageing’. Those living with DSI are invisible, their invisibility made endemic by the limited individual, community and professional knowledge about DSI. This ignorance diminishes an individual’s ability to develop an understanding of their circumstances and access to services and support. Without this awareness, those in need do not realise the possibilities for reducing their isolation and their challenges, nor can they advocate for the policy assistance that can aid health and well-being.
According to Fricker, these epistemic and hermeneutical absences constitute injustices when they prevent a person from ‘understanding a significant patch’ of their own experiences, ‘a patch of experience which it is strongly in her interests to understand, for without that understanding she is left deeply troubled, confused, and isolated, not to mention vulnerable to continued harassment’ (Fricker, 2007, p. 151).
This chapter argues that those living with DSI face these injustices, in addition to the numerous harms and risks they engender. Given this, society needs to better understand how these wrongs arise and are maintained. It needs to reconfigure our collective epistemic resources into a more desirable, just forms. To build hermeneutical resources that older people with DSI and their families need – this demands a whole-of-society policy and action response. Everyone has the right to grow older as well as the possibility to access quality healthcare, enjoy life-long learning, share in decision-making and participate in all desired domains of social life. As the United Nations Secretary General (UNSDG, n.d.) remarked, ‘Only by working together – across governments, international organizations, civil society, and the private sector – can we effectively implement the Convention on the Rights of Persons with Disabilities and deliver on the 2030 Agenda for Sustainable Development for persons with disabilities’.
Older people with DSI often experience hermeneutic marginalisation, exile to a wasteland, as their insights and experiences are insufficiently expressed. Without these expressions, our collective hermeneutical resources become structurally prejudiced (Fricker, 2007 p. 154), maintaining a systemic incapacity for those in need to access the epistemic resources necessary to resolve their marginalisation and injustice. As mentioned in the Introduction, older people with DSI are globally less visible and denied basic human rights. They are positioned as passive and powerless in health and social care. In Australia, policies that address the specific consequences of living with DSI are absent, so inequities and oppression continue. Moreover, while older people with DSI lack a constructive way of labelling themselves, professionals veer between the labels of deafblindness and DSI or loss (Wittich et al., 2013) while missing large numbers of individuals with the condition. Non-uniformity surrounding labelling can have debilitating impacts on the formation of robust, expedient, useful interventions. Compounding this is the more general lack of recognition by professionals who fail to acknowledge presence, significant complexities and challenges of living with DSI.
The hermeneutic wasteland is thus a cheerless, complex space beset by the demons of not knowing what is happening, feelings of shame and a wider social and health system not knowledgeable or equipped to recognise and remediate.
To escape the hermeneutic wasteland of growing older into and with SSI and DSI, we need to trust and access the wisdom of the expert knowers. Sensory impairments will come to all of us, one way or another, whether ourselves, parents, partner, family, friends, patients, clients, customers. The data which underestimates the incidence of sensory loss inform us that 66% of us will have hearing loss of some kind by age 60 (House of Representative Committee, 2017), and one-third of us will have some form of eye condition in older age (Foreman et al., 2017). We need to talk about SSI and DSI now. We need to allocate resources, write policy, educate health and social care practitioners, provide services and educate communities. We need to give older people the hermeneutic resources to understand that their sensory losses are not unavoidable or unsupportable. In short, we need to advise that there are strategies and supports, information and resources, care and communication to be had. While professionals and practitioners charged with the care of older people remain unaware of DSI and its impacts on older people, they also fail to validate the complex lives of those in their care, meaning that the lived experience of those who ‘don’t see too good or hear too well’ remains unacknowledged. The potential for harm exists in ignorance and as the Royal Commissions reveal harm has been enacted time and again.
A sense of identity and knowing DSI as a real and distinct condition is needed to help individuals and families navigate out of the wasteland. The ways which people have available to them to know that things could be different, or more specifically, could be better, are manifold as many as the individuals with DSI and their differing communication needs. These ways are dependent on recognition. The individuals, even if they can’t see well and hear better, can be better supported to live a higher quality life.
In tangible ways, epistemic (in)justice is about expectations; rectifying it involves a reconsideration of expectations. Often, we accept the things we have come to expect as normal, when they are normalised. We accept taxation, for instance, because we consider taxes provide benefits. But unquestioning expectations of hearing and vision degradation as we age and a concurrent general lack of support signal that degradation is inevitable as death and taxes. This perspective benefits no one. Our task is to consider the ways of altering a status quo that perpetuates and internalises ageism, ableism, harm and neglect.
To create change in epistemically just ways is to enable a dynamic engagement between the target population with DSI and policymakers. We offer a policy and research guide for exiting these hermeneutic wastelands:
1. Recognition by government of the distinct disability status and dedicated policy and support needs of people with DSI.
2. Intentionally seeking out older people to relate their stories and experiences. There should be no knowledge creation, research or policy without lived experience insights.
3. Listening to expert knowers with lived experience of DSI and ensuring their visibility and inclusion in policymaking is key.
4. Include families and carers. Lived experience insights of all stakeholders are critical to building a strong knowledge platform.
5. All disability research and policy to be co-produced in a collective manner with lived experience insights.
6. Provide accessible ways of eliciting lived experience insights: researchers and policymakers must budget and plan for the necessary time and resources.
7. A broad investment by Government in older care for those ageing in place and in residential aged care alike.
8. Skilling, upskilling and reskilling the existing aged care workforce in the specific needs of those with sensory loss/es and their families/carers. This will require development, implementation and wide acceptance of micro credentialling.
9. Skilling, upskilling and reskilling professionals as well as practitioners. This includes students in health and social care. No one can leave the wastelands without recognition of the condition of DSI with diagnosis, discussion and referrals for supports.
10. Information provision in multiple formats and media, such as a consumer handbook for those with DSI, their families and carers. They can’t leave the wastelands without a trustworthy guidebook.
11. Get the data right: use accessible methods, seek out the hidden populations and provide funding for these research endeavours.
12. Future policymaking needs to be co-produced and addressed: dedicated dual sensory support services, include families and carers as stakeholders, robust social support and raising awareness and skills at all levels.
13. Future research directions need to centre on co-production and accessible methodologies examining what people with DSI find helpful to achieve goals and improve quality of life.
14. Finally, we need lived experience-led research and policymaking: this means ‘growing’ and providing opportunities for people with DSI to generate and lead research and policy. This will require investment in disabled people’s organisations and providing research and policy writing skills acquisition opportunities. It will mean remunerating lived experience representatives to develop and advance as well as participate and contribute.
In this chapter, we explored some complexities and challenges of living with DSI for older people, families and carers. We linked epistemic injustices, both testimonial and hermeneutic, with the invisible epidemic of older people with DSI.
The keys to understanding why DSI is missing in action from policy and supports are linked in every way to a lack of epistemic insights from those living with DSI. These lacks and policy gaps result in the creation of a hermeneutic wasteland and deprives older people of resources to recognise, adjust to and manage DSI.
We have given a research and policy blueprint to promote epistemic insights and dedicated, targeted policymaking. However, essentially you can distil this discussion to one point: listen to the expert knowers, the people themselves and also to their families/carers in ways that work for them, so that any research is ethical and just, so the epistemology is truthful and the policies are codeveloped addressing the communities’ needs. In this way, getting older with or acquiring sensory losses doesn’t mean negative health outcomes, greater risks and being left out of social domains. In Australia, DSI-specific policies, practices and supports are missing. We contend that asking the expert knowers, that is, including lived experience and lived expertise voices in research, policy and practice, can catalyse needful change. With equitable research practices, better knowledge co-production, inclusive policymaking and greater individual, family/carer, professional and community awareness and accommodations, older people with DSI can be happier, healthier and safer.
Lived Experience of Disability
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