I am not vulnerable. I am Helen.

During the pandemic there was been a lot of use of the word vulnerable… And many of us don’t feel it’s the right choice of language.

“One of the most pervasive and damaging myths in modern liberal societies is the idea that disabled people are ‘the most vulnerable’.  This is a by-product of a culture that still widely associates disability with tragedy and perpetuates an individual analysis for something that is fundamentally structural… Disabled people, truth be told, do not need to be vulnerable… Vulnerability comes when politicians choose to pull the support disabled people need in order to live dignified, fulfilling, independent lives.”

Frances Ryan, Crippled

It brings with it connotations of pity and helplessness and makes it seem like it’s our fault if we die, rather than the societal inequalities around us. As Baroness Campbell said, “We are not vulnerable people. We are in vulnerable situations.”

But the word has been used in link with disability for much longer and it comes with an innate power imbalance between the vulnerable and those who are “helping” us, and that in turns allows for control and abuse to occur, or keep occurring. The word vulnerability brings with it an, often unspoken, idea that someone needs to rescue the person in question. It takes away the opportunity for self empowerment and is generally a regressive, outdated way of thinking about disability.

“The word ‘vulnerable’ is not consistent with the social model* in that it suggests that the disabled person is inherently and inevitably inferior. It is a use of language that locates the essential problem within the person with the impairment, and, in doing so, removes attention from the role played by the socio-economic structures of the system we live under in putting disabled people in situations of risk.”

Ellen Clifford, The War on Disabled People

(*For more about the social model of disability, watch a short video from Scope)

Labelling us as vulnerable is to emphasise the disabled person as being the problem, not the systems and contexts that are creating the vulnerability. And this in turn means the systems that can make us vulnerable aren’t challenged and the power imbalances remain. It also takes a large population with diverse needs, impairments and characteristics and reduces us to a generic population. In short, it erases us.

It can also affect outcomes. When we are labelled as vulnerable, it creates a culture where decisions can be made on our behalf, for our “best interests”. Measures are put in place for a sweeping population of so called ‘vulnerable people’ and in missing the nuance, you end up with a situation that rarely fits anyone. Such as some of the measures we’ve seen implemented around the pandemic.

Using the word vulnerable creates a culture where are lives are deemed to be a small price to pay for the greater good. Our deaths can be excused because of our ‘vulnerabilities’ and, because vulnerable suggests a fixed state, work doesn’t need to be carried out to move us out of the vulnerable category.

In her book about how society treats disabled people, Katharine Quarmby asks why disability hate crimes get missed or categorised as something else:

“One of the key reasons has to be that the victim is labelled as vulnerable.  This labelling does not happen with other forms of hate crime.  By failing to see the motivations for disability hate crime, the attitudes that underpin it, and by putting the responsibility onto the victim by describing him or her as ‘vulnerable’, we are letting those responsible for hate crimes continue t get away with it… By confusing vulnerability with targeted hostility towards the victim – we do not see the crime for what it is.”

Katharine Quarmby

More broadly, by speaking of us with the sweeping term vulnerable, it affirms the idea that we are of lesser human value, less human, and therefore less entitled to our human rights.

Further, such sweeping generalisations reduces us to objects, affecting the way we are treated and reducing us to one characteristic – we are no longer a mother who’s also a keen swimmer and helps out at school, we are now just vulnerable, not even a vulnerable person.

This fixed and blanket way of seeing us also means that the nature of vulnerability is obscured. It misses the fact that vulnerability is as much about the environmental context as it is the individual context. That is to say, you can be vulnerable in one setting, in one context, in one way, and resilient in a different setting or context or way but by calling us vulnerable, you miss these nuances. You ultimately miss our strengths.

Calling us vulnerable denies us our agency and can impinge on our self esteem and sense of worth, which are often already dented as a result of living in a capitalist society which doesn’t value disabled people.

When talking about the word vulnerable and relating it to yourself, Jasper from Wheelie Queer said:

“It reminds me of when you’re getting ready to go through PIP assessments, and things like that and suddenly you’re having to look at yourself through this new lens as weak and all the impairments that you have. It can be quite difficult to associate yourself in that way when you’re used to showing your strength, adapting around the issues that you face.”

Jasper, Wheelie Queer

Further, when we are being described as vulnerable, it becomes harder to feel proud of who we are. It is harder for others to see us as resilient and it reinforces the idea that to be disabled, to be vulnerable in some way, is inevitably a negative experience.

Coronavirus and Disabled People (UK)

I have been wanting to write about coronavirus and disability for some time now but every time I tried to think about it, I got too angry and frustrated. Hopefully I am now emotionally ready, we will see!

Obviously coronavirus is horrible for everyone. It is deadly and even if you haven’t had it, your life has been significantly changed because of it. There are loved ones you haven’t seen, holidays you haven’t taken, celebrations that haven’t happened. But for many disabled people, coronavirus comes with a skip full of additional worries.

If you have been paying attention to the news, you may well get the impression that there are no disabled people under 65 and that everyone with underlying health conditions are over 65. Younger disabled people are being forgotten. There are articles about grandparents desperate to see their grandchildren for a hug, but where are the reports about shielding twenty-somethings desperate to see anyone at all because they’ve been alone for months.

As the government shielding list is excruciatingly tight, many people, myself included, have decided to shield because we know our health risks and are vulnerabilities. Just because they don’t fit nicely into a governement tick box, does not mean I am going to endanger by life. There are also many people who cannot leave the house for other reasons, or can’t leave without care which may not be available now. This means that unlike most of the population, a lot of disabled people aren’t going out for exercise and fresh air.

Further, not everyone has internet. A survey by Glasgow Disability Alliance showed that only 37% of people said they had broadband at home. This means that they are not socialising online, they are not taking part in family zoom calls and they are not joining in with games on the house party app.

The mental health impact of not leaving your home, of not seeing other people and of not socialising in alternative ways such as online is significant. If you add in the additional concerns that people with disabilities have around the pandemic, you have a very serious threat to health and wellbeing. Twice as many disabled adults as non disabled adults felt that coronavirus related concerns were making their mental health worse. That is significant.

A higher proportion of disabled people than non-disabled people were worried about the effect of the coronavirus pandemic on their well-being (62.4% for disabled people compared with 49.6% of non-disabled people); their access to groceries, medication and essentials (44.9% compared with 21.9%); their access to health care and treatment for non-coronavirus-related issues (40.6% compared with 21.2%); and their health (20.2% compared with 7.3%) in May 2020.
The Office of National Statistics

My own experience with groceries, medication and health care has thankfully had issues that we have been able to reconcile eventually. I don’t eat much orally so grocery issues were limited to concerns about toilet paper. With medication, my carers have a good relationship with the pharmacy and this has helped significantly. Having carers has been critical here and I have been incredibly lucky that my care provision has not been impacted.

I also needed my feeding tube replacing which was complicated. It needed doing urgently but was not yet at emergency stage – it was an emerging emergency! But various people within the NHS system interpreted it as routine, which it would have been if routine operations were being done. In the end there were a lot of phone calls until I finally managed to get someone with a bit of power and a bit of common sense. What should have been a standard appointment ended up with me and my carer sat in a room in the hospital for the entire afternoon but the tube got changed in the end. In between all the calls, I was anxious and worried – if my tube completely broke, and it was getting close to that, then I would have been rushed into hospital as an emergency for an unplanned procedure.

I wanted to touch on my experience, even though it’s not been too bad, to give some humanity to the statistics. These are real people, real concerns and real lives that are being affected.

I mentioned that my care has been stable throughout this and I know I am very lucky in that regard but 43% of people in an RIDC survey said that they were no longer recieving visits from personal assistants. Many other disabled people are relying on friends and family instead of their usual care and this may be why 33% of disabled adults are feeling like they are a burden on others (compared to 11% of non disabled adults, ONS).

Those people who directly employ their carers have had to face many obstacles including what to do if the carers get sick and how to source precious PPE. Guidance was slow to appear and confusing at best. It has also left many disabled people who have carers or personal assistants, having to source and pay for their own PPE.

Side note, many disabled people live in poverty and many people in poverty are disabled.

Further, the Covid 19 Act made changes to what local councils have to do for disabled people. On the face of it, the aim was to free up resources to allow local authorities to prioritise care, however many disabled people are concerned about the potential loopholes it provides. Local authorities are already very stretched and as such it is incredibly difficult to get the care you need to thrive, rather than just survive. I worry that these loopholes will be used to minimise care provision and then, going forward, that people will be told they were ok on reduced care and therefore don’t need what they have been assessed for.

There is so much here that I cannot cover. This is already a rather long post and I have not touched on the specific impacts on visually impaired and hearing impaired people, or people who are neurodivergent or people with learning disabilities… You get the idea!

Just to give you a flavour of the issues and concerns at play…

And if that wasn’t enough, in the past, many disabled have been told that their reasonable adaptations for work, such as being able to work from home, are not workable. Coronavirus has revealed that we had the technology to make it possible, but not the will. This has been a bit of a kick in the teeth…

Similarly, lockdown meant suddenly everyone realised they could have events online. I have ‘attended’ so many talks and courses and conferences that would have been inaccessible to me if they hadn’t moved online. If I am out and about I use my energy up so much faster than when I’m at home and so I’ve been able to do so much more. I am really hoping that blended talks and courses are the way forward allowing people to participate in person and online.

Further Reading:
RIDC – Latest research into the impact of coronavirus on disabled and older people
Inclusion London – The impact of covid 19 and the government response on disabled people
Inclusion London – Access to Work issues arising from covid 19
Inclusion London – Coronavirus and the social impacts on disabled people
Coronavirus and the social impacts on disabled people in Great Britain: May 2020
Disabled News Service: Disabled people have been excluded and marginalised
Scope: We won’t be forgotten

Edited to add: Inclusion London’s report Abandoned, Forgotten and Ignored

Bird song and coronavirus

Some evenings the bird chatter – the kaa ka kas, the pep pip pips, the alarm calls- grate on me.  During the day I love hearing them and it grates on me that it grates on me and thus a vicious cycle spins on.

This is a new thing.  Normally I love hearing the birds as I settle into bed so I wanted to interrogate this, to try and understand what is going on.

My initial thoughts were about time of day; come evening, I am much more tired, and right now I am more likely to be fed up and despondent by the time I get into bed.  This is also the first time I am really alone in the day and I sink into my subconscious whirlings.  I don’t feel naturally aligned with appreciation, appreciation of anything, at this time of day.

I spend the day noticing and loving but by night I need distraction – tv, film, reading – something I can escape into.  And whilst the birds are incredible, they are inevitably out there in the world, right now.  And my mind will not let me forget that I am not, and will not let me forget that I am hearing them so much clearer because of the global pandemic. 

The birds do not give me the escape I need in this phase of my daily cycle.  Their caws and cacks instead pull me away from the fantasy world I plunge into and remind me that my escape is just an illusion.  That however hard I try, I am still living in a world with a virus that could kill me and the people I love.  A virus that has already killed. 

I am still living in a world where the reckless acts of strangers ignoring the rules could turn out to kill.  They could be carrying it, walking bombs waiting to be detonated.  I am still living in a world where disabled people are being devalued repeatedly in clumsy attempts to get through this crisis, where we are told we may not get the care we need to stay alive (1). And that now that able bodied people are stuck home too, suddenly technology can be used to meet up, to do courses. to offer talks online.  And suddenly working from home is perfectly possible.

The calls of the blackbird on the roof pulls me back into a world where people with a week or two of being stuck home under their belt, are suddenly experts on loving nature from home.  Despite their daily walks, possibly through countryside and woodland, and their good sized garden, they speak with the authority of a housebound disabled person who has lived this for years.  Our voices, those with lived experiences and expertise, are still not heard.  We are shouting and going unnoticed because we are disposable, literally right now.  Worthless.  Valueless. (2) 

I have shed many shackles since becoming disabled; the idea that my value is about my economic contribution and my productivity; that my self worth is tied to doing… Is the evening bird song grating against another shackle?  One where I cannot be a nature lover, or a nature writer, if I cannot always appreciate it and embrace it?(3)

The nightly scrabble and scramble of starlings on the feeder doesn’t seem as endearing as it did hours before.  And all that has changed is me.  I have moved through my day, and now I want to tune out the world, and all the noise that tries to tell me I am unimportant.  When the messages scream so loudly, so constantly, they cannot help but echo and reverberate around my soul.

By the time I get into bed, I need to escape.  I need to live in a different world or a different time.  And those birds that I love so deeply and dearly, peck through the bubble I am trying to build.

Come the dawn chorus, I am back to noticing, caring, loving and appreciating.

Notes

(1) A recent RIDC survey found 50% of people with care support needs are no longer receiving health or personal care visits to their home. Disabled people left off coronavirus vulnerable people list go without food. Ministers warned coronavirus bill threatens services for disabled people.

(2) ‘I feel like I don’t count,’ says man with MND. Disabled people ‘forgotten’ by government strategy.

(3) This already feels a harder label to claim with the ableism within the environmental movements and the wilderness ideal excluding disabled people

Staying home, some tips

I have spent a lot of time unable to leave my house in the past, and none of those periods have had a known end date. This means dealing with isolation, cabin fever and no idea when it will end, something a lot of people are facing right now. So I wanted to share some of my learnings…

First, if you are used to working outside the home, think about what work does for you. Yes you get paid but you also get to interact with people, leave the house, use your brain, be creative, problem solve and work adds to your self esteem and sense of worth. For me, this has translated as five things I aim to do each week:

  • Something creative – art, craft, writing…
  • Something that uses my brain – a crossword, scrabble, reading, learning…
  • Talking to someone who is not a carer – ideally this would be in person but there are times when this might be a phone call, a skype call, an email or some other virtual way
  • Checking in with my emotions – maybe doing tarot, journaling or whatever works for you. Expect to have complicated feelings that don’t necessarily make sense. Make space for emotions.
  • Finally getting outside the house. This is clearly not an easy one to meet right now. However, you can go into your garden if you are lucky enough to have one. If you don’t, you can open your windows to let some air and bird song in. I’ve also written about ways of connecting with nature when you are stuck in the house.

A few other things that might be useful to note include:

  • Allow space and time for emotional exhaustion
  • Expect to spend more on utilities during this time. You won’t be using work gas, electric and water and that will add up.
  • Keep to at least a loose routine, especially during week days.
  • Get dressed. Yes you can have a few pj days, but make the effort most days. You will feel better for it.
  • It’s ok to laugh. Gallows humour is a way of coping with difficult circumstance.

Then comes the question of how you are going to pass the time…

  • Online contact
  • Online learning
  • Reading
    • Don’t set yourself up to read all of War and Peace. Be realistic about how your energy levels and concentration are being affected. All books are valuable and you can read children’s books and young adult fiction even if you are in your 90s.
  • TV
    • All of Criminal Minds is on Prime, that’s a lot of episodes!
    • Comedy series’ on Prime – Modern Family, Life in Pieces, The Middle
    • Documentaries on Netflix – The Pharmacist, The Trials of Gabriel Fernandez, explained, 60 days in,
    • Fun viewing on Netflix – You Me Her, Clueless, One day at a time, Grace and Frankie
    • Please share your own recommendations for films, tv and books below!
  • Think about all those hobbies you always say you’d like to try, now is the time. Take up knitting or paint by numbers or cooking. Whatever it is, you will find a tutorial out there.
  • Write yourself an isolation bucket list – film nights, skype coffee, cleaning out that cupboard you never get to…

BUT also prepare not to do all these things. All the news and uncertainty takes an emotional toll on people, and makes us feel tired even if we aren’t doing much. Think about small, bite sized activities and intersperse them with rewards such as lunch, a cup of tea or an episode of your current go to tv show.

These are strange times and if you aren’t used to being stuck at home, it’s likely to feel very constricting but I thank you so much for doing what you are doing. By staying home, you are helping to reduce the spread of coronavirus and keep those of us who are vulnerable safer.

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FOMO and chronic illness
Goals, aims and ambitions when you’re retired/ill