A THINK PIECE
by Jane Campbell
Hi, I’m Jane and I belong to a group called ‘The Vulnerables’. Sadly, we are not a new pop group about to make our millions, but we are very popular at the moment. You will hear about us every-day, on the radio, the TV and wall-to-wall social media.
The old Methodist adage goes “sticks and stones may break our bones, but words can never hurt us.” So why does this popular term ‘vulnerable people’ make me, and many others like me, uneasy, exasperated and wounded? Partly it is that the synonym is not so attractive; it conjures up weakness, victimhood and a cry for others to take responsibility for us. But this is not the whole reason. It is also because this term is chosen in favour of other words – Human rights, equality, and service entitlements for those who need them.
The term is used to help define the relationship between the governed and the governing. Easy descriptors like ‘the vulnerable’ can take this relationship backwards, not forwards.
Disabled people young and old, do not want to be typecast as “vulnerable” in order to get citizenship rights like daily help or reasonable adjustments in our lives. We want services relevant to our needs and access to the same environment as everyone else. Don’t get me wrong. We can be vulnerable at times. During this pandemic many of us know we can’t entirely self-isolate because we rely on the assistance of other people. We’re often vulnerable to whatever germs our support workers may, despite their best efforts, bring into our homes. It’s a risk we have to take — always. We don’t have a choice…..
But it’s worth considering that many disabled people like me are accustomed to this contagion-phobic territory. Welcome to our club, nondisabled people! The annual winter cold for me is invariably a dose of pneumonia. Thousands of disabled people are used to a form of lockdown due to barriers in society. Our ingenuity and resilience in overcoming these barriers are underestimated and unrecognised and the vulnerability logo continues to stick.
All people are vulnerable at times, but this is a transitional state, not an absolute one: if you stay out all night in sub zero weather, you are vulnerable to hypothermia. If a loved one dies you are vulnerable to deep sadness. This does not define you as a chilly or a sad person! So why are people who require someone get them out of bed or fetch them a meal, find themselves categorised and defined, as vulnerable people? Not only throughout the pandemic, but now generally?
Many of us were also given the added status of the SHIELDED and I will come back to that label later. So, by the end of March our decades-old stereotype of being defenceless victims was in full swing again. ‘Services for vulnerable adults’ have historically treated its recipients as passive therefore perpetuating dependency and exclusion and these past few months have been no different.
Does this labelling approach address our occasional risky situations? No, because we are not included or empowered to be part of our own solutions. During this pandemic Disabled people’s top survival priorities were:
- supermarkets to prioritise disabled people’s delivery slots over those able to shop independently,
- access to PPE and a dedicated contingency list of volunteers able to help us should our support staff come into contact with the virus,
- assurance of equal access to healthcare, not subject to frailty scoring for intensive care,
- accessible information like Sign Language Interpretation on the 5pm Coronavirus briefings. (deaf people are still waiting….)
Instead of responding to what disabled people said we needed, “the vulnerable” were told they were shielded, put on a list and sent guidance without the means to follow it. Many disabled people in the vulnerable or shielded category had to campaign for their basic human rights throughout the pandemic directly because of this vulnerability conceptualisation. A static meaningless concept which simply serves to anonymise our humanity and human rights.
Words matter. It is convenient to have a collective adjective to describe those individuals who may find themselves in a vulnerable situation, but it is also dangerous. For people to receive education services we do not have to be defined as “ignorant” (even if in one sense we certainly are – else we would not require the provision.) Although “vulnerable” is not used in a pejorative sense as “ignorant” can be, it is still a loaded word. It should be used with greater selectivity and greater sensitivity.
When reflecting on the way that those in the so-called ‘vulnerable group’ have been treated during the worst months of the pandemic – it certainly didn’t feel like we were “shielded” from the worst effects.
With more than 13,000 older and disabled people having died from Covid-19 in care homes across England; when the COVID-19 legislation resulted in the Care Act Easement policy and disabled people lost vital social care support; when the frailty scoring was being discussed in terms of prioritizing patients for ventilation and intensive care treatment based on age and disability not clinical benefit; and when GPs started ringing around asking ‘the vulnerable’ if they wanted to consider a DNR on their records….. It began to feel like there was only a short walk from being one of ‘the vulnerables’ to the chilling club of ‘the expendables’…..
No, the term “vulnerable people” has to go in to room 101.
First delivered at the London School of Economics (LSE) on 23 June 2020.
Copyright: Baroness Campbell of Surbiton, D.B.E.