Improve the lives of the living

The Journal sat down with Pam Duncan-Glancy MSP to discuss the assisted dying bill, and why we need to be supporting those living with disabilities. Better care, support and fundamentally improving the way society views and values the disabled is essential for change.

As the debate over assisted dying intensifies, critical voices highlight the risks for disabled individuals, arguing that systemic inequalities, societal biases, and inadequate care systems undermine true autonomy and devalue disabled lives.

The debate surrounding assisted dying legislation raises ethical and legal challenges, particularly for disabled individuals. Systemic discrimination, inadequate care systems, and societal perceptions devalue disabled lives and make such legislation dangerous. Pam Duncan-Glancy, MSP, highlights these risks, calling for a shift in focus toward systemic reform and valuing all lives equally. Her reflections on the COVID-19 pandemic and long-standing structural inequalities bring into sharp focus the systemic barriers disabled individuals face.

The Journal sat down with Duncan-Glancy on Monday 25^th November 2024 to have this conversation. Why is this date so significant? It is the date that a debate was had in UK Parliament on assisted dying, with professionals from around the world gathering to share their experiences.

Prioritising living over dying

Society should prioritise making life better for disabled individuals rather than facilitating their deaths. Duncan-Glancy argues:

"I think we should be making it easier to live than it is to die. And right now, for disabled people, it's really, really, really hard to live".

Disabled individuals are more likely to live in poverty, less likely to get a job, struggle with inaccessible housing, and experience mental ill-health. Shockingly, 55% have contemplated taking their own lives. These figures are not coincidental but rather a reflection of deeply embedded societal inequalities. Societal systems and infrastructure fail to support disabled individuals, contributing to a sense of devaluation.

Quite simply disabled individuals are more likely to die at a younger age than other people, regardless of physical conditions and ailments – is this a world we want to be living in, when more could be done to change the statistics?

It's clear that oppression and discrimination are significant for people with learning disabilities, and because of this, people with learning disabilities are more likely to die about 25 years younger than anyone else.

The questions that needs to be asked is, why do we struggle to value disabled individuals in our society?

Better education is necessary to shift these perceptions, in the form of broader advocacy and the promotion of true inclusivity, adding: "There’s so much that feels like an afterthought, and we just don’t consider the impacts... Education could help people understand disabled lives are valuable”.

When talking about valuing lives, and drawing on her lived experience, she highlights the dangers of introducing assisted dying laws without first addressing the systemic barriers that prevent disabled individuals from leading fulfilling lives.

COVID-19 and the fragility of care systems

The COVID-19 pandemic exposed glaring weaknesses in care systems, leaving disabled individuals disproportionately vulnerable. These weaknesses were bad pre-Covid, but got considerably worse during it, and now the system is on its knees.

Duncan-Glancy recalls: "You were more likely to die if you were a disabled person; you were also less likely to get the support you needed".

Care packages were reduced or labelled as “non-essential,” leaving many without vital support. "Some people who had their care packages cut during the COVID pandemic have never had them returned" she added.

COVID-19 highlighted the fragility of care systems and the deep-seated biases that devalue disabled lives.

But it goes beyond that when it comes to neglect and inaccessibility. A stark example of this neglect was the lack of access to Personal Protective Equipment (PPE) for many disabled individuals and their carer’s. Essential social care services were often cut under the guise of pandemic restrictions, with devastating consequences:

"Many disabled people couldn't access PPE when they needed it; they had Do Not Resuscitate (DNR) orders placed on their life because of people's opinions of the value of disabled people's lives".

In addition to systemic neglect, the pandemic revealed discriminatory practices such as the inappropriate application of “Do Not Resuscitate” (DNR) orders for disabled individuals. Duncan-Glancy shares her own experience of fear during this time:

"My husband and I were terrified during the pandemic when we heard that rhetoric, so much so that we wrote each other a letter and left it in the living room, that letter said: if the question comes, please do resuscitate me".

Can any of us ever imagine being in a situation where we feel we have to so strongly advocate for our own lives, that we write letters demanding people do resuscitate us, because if it came to it, society would not act in that way?

The systemic devaluation of disabled people, reflected not only in the denial of care but in the life-or-death decisions made during the pandemic, highlights the clear biases that can lead to decisions that strip disabled people of their right to life.

Systemic discrimination and societal attitudes

Societal biases towards disabled people amplify the risks of assisted dying legislation. Practices such as DNR orders and inaccessible infrastructure reflect a broader culture of exclusion. Such systemic neglect compounds feelings of devaluation, often leading disabled individuals to internalise these biases. Duncan-Glancy asks:

"How could you ever safeguard against covert coercion and internalised ableism...?"

These societal perceptions also shape decisions around assisted dying, as individuals may feel their lives are less valuable or fear being a burden. Duncan-Glancy warns:

"When people opt for assisted suicide... they do it because they think life wouldn’t be tolerable if I couldn’t do X or Y". That situation and outlook is bleak, because right now the care packages and infrastructure are not readily available to support those who need it. We should in 2024 be able to provide suitable care for those in need.

Safeguards and coercion

Duncan-Glancy raises significant concerns about the feasibility of safeguards in assisted dying legislation. Questioning whether it is possible to protect individuals from societal biases that pressure them into making such decisions, she says: "What kind of safeguard could you put in a bill that protected someone against covert coercion and internalised ableism?".

Given the entrenched inequalities disabled people face, she argues that no safeguard could fully address the risks of abuse or coercion, and that legislative solutions cannot be divorced from the broader systemic context.

The importance of palliative care

Instead of assisted dying, Duncan-Glancy advocates for investing in robust palliative care systems that prioritise dignity and comfort. She envisions:

"Palliative care would be something that gave us a good life at the end and that allowed us to be with our families and our friends, to enjoy and get through comfortably the end stages of our life".

She also highlights the importance of supporting carers, many of whom are unpaid or underpaid. As she explains, "Unpaid carers in Glasgow are doing a power of work, but they're on their knees... emotionally, physically, mentally". And this isn’t exclusive to Glasgow, across the whole of Scotland unpaid carers are juggling life, work, family, and caring responsibilities. Addressing these systemic issues would provide a more compassionate and sustainable alternative to assisted dying.

A Human Rights perspective

Duncan-Glancy ties the debate to the fundamental right to life, a non-qualified right under human rights law, arguing that decisions around assisted dying are often influenced by internalised ableism and societal perceptions. Such perceptions are shaped by societal attitudes and structural inequalities, undermining the validity of these decisions. So, the solution lies in challenging these biases and investing in systems that support disabled lives.

"In 2017, the UN 2017 Report found that things were pretty intolerable, and that there were systemic breaches of our human rights; that just got worse in COVID”, she commented. The long-standing structural inequalities faced by disabled people are clear for all to see, but never seem to make the top of the agenda.

Reframing the debate

Duncan-Glancy’s reflections challenge society to address systemic failures and societal biases before legislating on assisted dying. Her experiences during the pandemic, coupled with a broader critique of systemic discrimination, demonstrate the need to focus on improving care systems and valuing disabled lives. When asked what do the legal professionals reading this article need to consider, she poignantly concludes:

"I think they should question very, very, very seriously whether or not they think there is a legal safeguard that could ever counter the tide of the negative attitudes and the systemic oppression that disabled people face".

Despite her concerns, our conversation ended with a sense of cautious optimism and a desire for systemic reform, a rallying point for calls to action, action that isn’t just awareness and an investment in systemic solutions: "I really hope things will change... We need to look at what we can do instead, like providing better, more suitable care".

Can we as a legal profession challenge policymakers and society at large to prioritise systemic change and the value of all lives?

Interview undertaken by Rebecca Morgan, editor of the Journal