On being ‘that person’: A disabled perspective on ‘ZA’

By Gill Loomes-Quinn, 29th April 2021

My OJCOP colleague, Celia Kitzinger, and our regular contributor, Claire Martin recently observed a challenging case before the Court of Protection concerning ‘ZA’ – a woman with Schizophrenia and diabetes. Proceedings followed an application by the NHS Trust from which ZA has been receiving treatment for severe infections and other complications arising from her diabetes, to determine whether ZA lacks the capacity to decide whether or not to consent to the amputation of a leg, a treatment proposed by her treating clinicians; and, in the event she is deemed to lack capacity, whether amputation would be in her best interests. You can read in detail the facts of the case, and observations and commentary on it in Celia and Claire’s blog here.  I did not observe the proceedings, but in this short piece I wish to share my response to the case (as I understand it), and my perspective on ZA’s position.

As a disabled person who has been a fulltime wheelchair user for the last four years, since the age of 33, and whose life has been changed almost beyond recognition as a consequence of the progressive impact of my multiple impairments, ZA’s apparent position – that she doesn’t “want to be in a wheelchair” as she’s “not that person” spoke to me and touched more than a few nerves. 

Why is this a best interests decision at all?

My first reaction to the case is one of anger and frustration that ZA has come to find herself in a position where a fundamental decision about her health and her future has been taken out of her hands and made by a judge in consultation with medical professionals. 

ZA has a history of Schizophrenia and associated fluctuating capacity, and the impact of her diabetes on her leg did not occur overnight. Indeed, it seems that ZA has repeatedly voiced her wish not to have her leg amputated over a period of years – both as a refusal of consent (when capacitous) and as an expression of values, wishes, feelings, and beliefs (when apparently lacking capacity). I am given to understand that ZA experiences ‘flattened affect’ as part of her Schizophrenia, which may be expected to dampen her response to her circumstances, but her views seem consistently held and expressed, Why, oh why then, did no one involved in her treatment suggest she set out her refusal in an Advance Decision to Refuse Treatment (ADRT), especially given her Schizophrenia? This would have enabled a disabled woman to ensure that her ‘voice’ would continue to be heard and respected in the event that she was deemed to lack capacity at the material time that a decision needed to be made about her leg. I find the fact that this opportunity was clearly not made available to her unsurprising but tragic. (I have written here about my own research on ADRT and disability, and discuss this in an interview with barrister, Alex Ruck-Keene here).

Becoming ‘that person’ (following a best interests decision)

Now that the decision is a ‘best interests’ one, I hope in the strongest terms that ZA’s wishes are upheld. I say this firstly because my general world view and personal ‘hierarchy of values’ places a strong emphasis on personal autonomy and the rights of individuals to make their own choices concerning their bodies and their lives – a position rooted without doubt in my experiences as a person disabled from birth.  But I have a more practical, pragmatic reason for taking this view.

Having been disabled since birth, I have been a fulltime wheelchair user for about the last 4 years (since I was 33), and my life has been completely transformed by the impact of the progression of my impairments. I know that there is a general tendency (among both abled and some disabled people) to talk about “getting used to” and “accepting” acquired impairments, or the progression of congenital ones – and there is obviously a body of sociological literature on these phenomena. But my ‘real life’ experience is that these processes are hugely complicated – with ups and downs and lots of complex, conflicted feelings and responses. And, more relevant to ZA’s case (with the amputation ZA’s life expectancy is 5-10 years) these processes of adjustment take time. 

 Unlike ZA, I have always been relatively positive about my chair, and I haven’t ever seen myself as “confined” to it, or “bound” by it, or “defined” by it. I’ve even written poetry about how it changed my life for the better: life in our society  as a wheelchair user can be tough, but life without one when one has chronic pain, fatigue, and mobility limitations can be totally, utterly unbearable. But even so, I have sometimes HATED my body as it is now. Sometimes I still do. It’s like being stuck in a rusty cage. And the thing about hating your body is that there is no escape. You cannot go anywhere to snap out of it and distract yourself. And along with this, learning how to accept and work with support is a process too. I know I have struggled – sometimes less than graciously – and sometimes I have been quite difficult to help as a result.

Given the reactions of abled people to my experiences, I sense that many people don’t really understand these processes of adjustment, or perhaps much about living a disabled life in our society more generally – the time it takes to access support and get things right. The endless bureaucracy, and the energy it takes to do the ‘job’ of being disabled. What happens when vital equipment breaks. How much of our physical world remains totally inaccessible if you get around on wheels rather than feet – how much you lose as a result, and how much you grieve. Four years into this process – as a relatively positive wheelie – and I’d say I am just about getting my head around what it means to be this person and to be living this life, a life I certainly did not expect to be living. And this remains very definitely a work in progress with ‘good days’ and ‘bad days’. Remember that ZA is expected to live 5-10 years following amputation.

So how would it be to have these experiences, and these feelings ‘forced’ on me as a consequence of a best interests decision? I obviously cannot (and would not wish to) speak for ZA. But for me it would be torturous. I cannot imagine the impact on my mental health, and how this would affect how I would engage with those around me and those supporting me. I have a strong desire later in my career to undertake longitudinal research around the consequences of best interests decisions, and this sort of situation highlights precisely why. For me, navigating this life that I did not expect to be living is an ongoing challenge – and one that seems surprising to many abled people in my life. I cannot imagine how it would feel to have got here via a best interests decision that did not reflect my expressed wishes.

I would hope that if a best interests decision is made on ZA’s behalf, it reflects her wishes. I would also hope that it takes into account the ‘voices’ of disabled people and organisations in situations more analogous to ZA’s to add an accurate representation of ‘adjustment’ and ‘acceptance’ to the ‘balance sheet’ of a best interests decision. 

Gill Loomes-Quinn is co-director (with Celia Kitzinger) of the Open Justice Court of Protection Project.  She tweets @GillLoomesQuinn

Image is original artwork by Gill Loomes-Quinn

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