I have been re-reading Anna Arstein-Kerslake’s book, Restoring Voice to People with Cognitive Disabilities. And it has made me reflect on the adults I care for as a live-in carer. Many of them live with cognitive disabilities such as dementia or the after-effects of stroke. Although their situations may not precisely align with the examples in the book, the central principle still applies. We must see each person as a whole individual, not as a diagnosis or condition.
When we think about dignity in ageing and disability, we often imagine compassion, empathy, attentive and person-centred care, or simply a safe place to call home. But there is something just as important: being recognised as a whole person, not only by loved ones and caregivers but also in the eyes of the law. And by “whole person,” I mean someone valued for who they are—regardless of ability, disability, or age. Your voice counts, your choices matter, and your decisions deserve to be taken seriously.
Dignity through Recognition
Dignity begins with the ability to participate in your own life. When we disregard someone’s choices, opinions, or wishes simply because they have a cognitive disability or declining capacity, their dignity quietly slips away.
Take adults with dementia. Too often, a diagnosis becomes an assumption that they can no longer manage their affairs. While this may sometimes be true in advanced stages, it does not mean their voice should disappear. Even with significant cognitive decline, individuals can often make meaningful daily choices, such as what to wear, what to eat or drink, whether to go for a walk or stay indoors, and whether to listen to music or watch television.
The challenge is ensuring that decision-making arrangements do not erase their voice. This isn’t about leaving people to cope alone. It’s about creating decision-making systems that respect wishes and preferences, even when individual needs help to express them. Sometimes that support is as simple as giving extra time and patience in a care setting. Other times, it requires building legal frameworks that prioritise the individual’s choices rather than overriding them.
Ability, Not Just Disability
One of the most striking insights from Arstein-Kerslake’s book is the shift from focusing on what people “cannot do” to recognising what they can do when properly supported.
An older adult with memory loss may not be able to manage complex finances but may clearly express where they want to live or who they trust to help them. A young person with an intellectual disability may need guidance to understand their options. Yet they are fully capable of making meaningful choices about their everyday life.
The book illustrates this through real cases. In one case, an adult with cognitive disability was placed in a group home against their wishes. Even though with proper support, they could have lived more independently. Another case shows a woman with dementia, supported by someone she trusts, who continues to play an active role in family and community decisions. In doing so, she preserved her sense of identity and her dignity.
A Call to Reflection
We need to ask ourselves: whose voices do we hear, and whose do we silence? To be seen as a whole person is not an abstract human rights principle—it is a daily act of respect. Do we only value dignity when someone is independent, or do we also respect their ability to make supported choices?
We should remember that dignity in ageing and disability is not just about independence. It is about recognition: the right to be heard, respected, and supported in shaping one’s own life.
So the next time you are with someone whose voice is quieter, slower, or harder to follow, pause. Listen. Consider what it truly means to uphold dignity.
Something to ponder: Think of an older adult or someone with a cognitive disability in your life. How often do you genuinely ask for their opinion on decisions that affect them? And what would it mean to truly restore their voice?
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