COVID-19, disabled people, and the right to LIVE (independently)

Jamie in an electric wheelchair in front of bushes, looking into the distance

COVID-19, disabled people, and the right to LIVE (independently)

Coronavirus is ripping through care homes. It is killing thousands of people who are trapped in these institutions, often with no choice or control as to who provides their ‘care’, no way of protecting themselves, and who are left watching their friends die. Part of the Spanish approach has been a rapid deinstitutionalisation (LINK). They’ve realised that these care homes have become death traps, and that once COVID-19 is in the home, even with the best efforts, people can’t be kept safe from it. Resultingly, they’ve encouraged and supported people to move to live with their families or in hotels, even for a short period.

Nothing like that has been tried here. We have a system designed to support it, with direct payments firmly established, but people are being kept in these institutions or under agency care, with nothing to do except wait for the virus to get them, and to shout as loudly as possible about the risks.

In the community, people can choose between ‘direct payments’ and a scheme where care is commissioned for them. Direct payments allow people to access their care budget, and choose who they employ to meet their needs, setting the conditions themselves. This is often an alternative to having agency care, where you might have no choice over who came, and where those agency carers typically visit tens of other vulnerable people.

Again, care agencies risk becoming an incredibly dangerous vector for COVID-19, just as care homes do, with infected but pre-symptomatic or asymptomatic carers trekking between a round of vulnerable people, often by bus. People are typically visited by multiple carers, and these carers may well be visiting both people with COVID-19 and people who are extremely vulnerable.

Carers often work under dreadful conditions – paid minimum wage, not paid travel time between visits (though I believe this is illegal), expected to work with no PPE and put their own health at risk for the people they’re supporting. Similarly care home work is incredibly physically and mentally intense, and massively underpaid. Carers, in this situation, cannot help tracking COVID-19 between people, however careful they are.

Direct payments shift the system. They allow people to recruit and employ directly, and agree the terms and conditions of their employment. They mean disabled people can employ carers (or as we generally prefer to say, “personal assistants” that we have chosen, who potentially don’t visit other disabled people. They mean I can choose who helps me with intimate personal care, who washes and dresses me. They mean I can take the strongest of steps to keep myself safe from COVID-19.

Now is the time for a massive expansion of this programme to allow people to move out of care homes and away from agency care. They should be allowed to employ housemates, family members, neighbours, anyone willing and able to support them, in whatever flexible manner meets their needs. The funding should be generous and easy to access. Local authorities should be forming teams designed to promote this and contacting people directly to offer it as a possibility during this crisis.

This is how we save lives.

Disabled People Are Not Expendable (yet we’re being left to die)

A hospital bed set up in a theatre with curtains projected behind me
Jamie Hale – NOT DYING R&D, Barbican Centre

The views in this article are entirely my own and do not reflect that of any organisation I work with. They should be considered reflective of my position at the time of writing, which may have since changed.

The National Institute for Clinical Excellence (NICE) has released its guidelines for critical care in Coronavirus. NICE is widely respected, and its evidence-based guidelines often take years to develop, with wrangling backwards and forwards between medication companies, researchers, journal articles etc. The fact that it’s provided guidelines so quickly in the case of coronavirus is impressive. BUT NOT THE CONTENTS

There has been discussion in the press for a while about moving to limit access to critical care for people deemed most likely to benefit from it – e.g. most likely to survive, maybe with an element of assessment of quality of life in there. In the press, some people have proposed limiting it to people below a certain age (below 60 and below 70 are both mooted), probably on the ethical basis that those people have fewer years of life ahead of them than younger people can be presumed to, and thus that there would probably be fewer years of life saved by treating them compared to someone younger.

Better that an official guideline is made than that decisions are made on a case by case basis, but the ethical basis of the guideline is what’s difficult to decide. Under the UK guidelines:

  • On admission to hospital, a patient’s clinical frailty scale (CFS) is calculated
  • If the patient needs critical care, and this is below 5, and the patient is likely to benefit from critical care, then they are typically admitted
  • If this is above 5, or there is uncertainty about the benefit, then their case is discussed with the critical care team
  • Health professionals are asked to discuss treatment plans with people who would not benefit from critical care or who don’t wish to be admitted
  • Health professionals are asked to discuss a Do Not Attempt CPR decision with people with capacity and a CFS score of 5 or above
  • If critical care is started, it should be stopped if it seems less realistic for the goals of critical care to be achieved

The Clinical Frailty Scale looks at the amount of support people need in their daily lives and uses this as a proxy for likelihood to respond to treatment. This is a dangerous scale to use because what it measures is not level of illness but degree of support needed in your daily life. I score 7, which is the highest score given to people who are stable and not expected to die in the next 6 months. To score below 5, you need to be independent, and not requiring support. You might be “slowed up or tired during the day”, but you don’t need help with any activities of daily living, including heavy housework.

Once you start to need help with housework, that’s it – you’re no longer an automatic ‘in’ for critical care treatment. If. like me, you’re reliant on someone for all aspects of personal care, then however stable your health is, and however likely you are to survive coronavirus, you’re likely, especially as the crisis builds to not be given treatment.

The Clinical Frailty Scale doesn’t seem designed for younger people. A brief bit of research only suggests that it’s been used and validated on a geriatric population. This means that while it may be accurate in predicting outcomes for elderly patients, it has not been proven to be an accurate predictor for younger people. As frailty syndromes with elderly people are a result of all the aspects of the body and mind slowly becoming worn out, if someone hits a certain score on the scale, this would indicate something about their overall health state and hence predict outcomes. For younger people, who might need social care for reasons that don’t affect their likelihood to survive coronavirus, decisions will be made about us without questioning us.

For younger people who need help with activities of daily living, there seems to be no evidence that the scale is accurate in predicting our outcomes. It makes the assumption that needing full support with personal care means someone is less likely to survive Coronavirus, and then, by allocating treatment to them on that basis, makes them less likely to survive treatment by deprioritising them for it. Applying this scale to our lives is therefore dangerous and highly concerning. We will be considered low priority for treatment and then killed, without any real assessment of whether we would have survived it.

The NICE guidelines also make reference to providing treatment as long as people will recover to an extent that is acceptable to them, but make no attempt to find out what extent is acceptable to people. This runs the risk of doctors predicting that someone would have a low quality of life if, for example, given a tracheostomy and ventilator for the rest of their life, when actually that outcome might be acceptable to them – it would to me.

Obviously decisions have to be made about who to treat, and how. It is a reasonable outcome commensurate with the general NICE attempts to maximise quality adjusted life years (years of expected life gain at full quality of health). Many disabled activists oppose this, arguing that the arbitrary decisions made are based on assumptions of our health state and what people who are themselves well presume our quality of life will be. This is often underestimated by people who are not disabled.

The application of a measure to young people to determine the treatment we will be given if we need critical care, which as far as I can tell has not been validated in our situation, is incredibly dangerous. This will lead to a disproportionate number of disabled people who would have had every chance of survival instead dying of coronavirus unnecessarily. The CFS will not adequately identify our chances of survival, and its application will be fatal.

How to share space in quarantine: setting the rules

A table with a brown leather bag at the back. The arms of two people are resting on the table, alongside a coffee cup, a notebook, a tablet, and a glass of water.

I was discussing this with colleagues and realised that the negotiations I’ve been engaged in with my wife might be useful for other people. Now we’re both working from home, we need to find ways of not getting underfoot for each other, and here are some of the lessons I learned…

Set ground rules for sharing the space and write them down so they’re agreed

  • What does it mean to be “working” – how are you going to differentiate work and non-work time?
  • What are the rules on disturbing each other when working? Do you just approach each other? Do you stick to texting?
  • What are the rules on taking calls when working? What spaces can you make noise? Where should you be quiet?
  • Can you create spaces in which you’re silent vs noisy?
  • How are you going to negotiate if your job involves making noise (e.g. musical teaching)?

Decide how to manage conflict

Arguments will happen, and being compressed together will only make that worse. How are you going to de-escalate when these happen. Which methods of communication work well for you, and which don’t?

  • Does texting or emailing help you have a bit of distance and think through what to say, or does the distance make you more likely to be irritated?
  • In face to face conversations how can you have them on an equal level, e.g. in a shared space in the house, and at a time that suit both of you?
  • How can you make sure arguments aren’t the only time you talk to each other?

Spend quality time together

Just because you’re around each other lots doesn’t mean you’re spending quality time together. You might just be ships passing in the night, or exchanging tense words. You’re going to be in the house a lot, so book in some time to enjoy yourselves

  • Play a board game
  • Have a cuddle
  • Cook together
  • Decide to reorganise a room
  • Watch a film
  • Dance to silly music

Have a regular house meeting

Conflict will come up, however hard you try to manage without it. People are tense and stressed, and this increases the risk of flare ups. Organise regular meetings to discuss how everything’s going in a friendly and calm environment. When issues arise, unless they need approaching, postpone them for a time when you’re all calm and prepared – maybe share an agenda in advance so nobody feels startled. Discuss everything, then wind up doing something you all enjoy

Good luck in the quarantine – and feel free to get in touch if I can help you

Disabled people’s demands under coronavirus

A black stitched protest banner saying "DISABLED PEOPLE AGAINST CUTS: RIGHTS NOT CHARITY" with the DPAC logo and a megaphone

I just spoke on a The World Transformed webinar about coronavirus, and I highlighted some key demands that are emerging from disabled people. A lot of people asked for more information about those in that chat, so here they are:

  • Adequate pay (living wage) for Personal Assistants and carers who all work in high risk roles, including those doing 1:1 and agency work with ill and disabled people through direct payments
  • Funding for full sick pay for Personal Assistants and carers whether employed through care agencies, direct payments, or other measures so they aren’t forced by financial circumstances to come in when ill
  • Enough Personal Protective Equipment for PAs and carers working with disabled people
  • Extra care funding for disabled people who have to hire PAs and carers at short notice to cover shifts as people fall ill
  • A guarantee by the government that disabled people won’t be deprioritised in access to treatment for the complications of coronavirus as is happening in areas where health systems are being overwhelmed

I spoke about my experience as a disabled person who uses direct payments – which allow me to employ my own personal assistants directly, but which leave me as an atomised individual employer.

I am very vulnerable to coronavirus, I use a ventilator part-time (mostly at night) and don’t have a spare bacterial filter for it. I have carers 24/7 who constantly come in and out of my house, meaning I’m dependent on them taking care to avoid contracting coronavirus, because if they get it, I get it.

I don’t have access to personal protective equipment for my carers. We’re making masks out of t-shirts, hand gel out of hydrogen peroxide, alcohol, and cucumber gel, and washing disposable gloves in the machine to re-use them.

I can’t pay my carers if they’re off sick. This means they might come into work ill – not out of cruelty but because they have to work in order to pay their rent, and I know that. If they’re off sick I don’t have access to an agency-like pool of people to cover their shifts, though I’m hiring.

In Italy, health services have been so overwhelmed that elderly people and those with significant pre-existing conditions just aren’t being treated. This terrifies me, because – like most people – I want to live.

Please think about these demands and the experience of disabled people amidst the coronavirus crisis.

Surviving Inside – fifteen tips on how to cope with self-isolation

The photo is black and white. In the background I sit in my electric wheelchair, you can see the edge my head on the headrest, the photo is in profile. The foreground of the image is taken up with a dark grey greyhound, whose paws are on my shoulders. His face is in profile, looking to the left of the image, his mouth is open and his ears are back
Me with my greyhound – Benjamin Gilbert // Wellcome Collection

Last summer I spent 6 months in hospital. Three months in one room in one hospital, 3 months in one room in another hospital. I won’t pretend I didn’t go a bit mad during this time – clawing at the walls and wishing I could get out more than once or twice a fortnight – but I survived it unscathed. Before that, I’ve spent long periods bed and housebound due to illness and inadequate equipment and support. This list is based on the things that made those experiences liveable:

  1. Plan your day – whether you want an hour by hour plan, or a list of goals for that day, make sure you know what you want to do. If you’re having a down day where you do nothing, plan what that nothing is. This gives you a mental structure and lets you schedule in things like mealtimes and something to look forward to.
  2. Utilise technology – I have a google home system, which can easily be set up with reminders, to make sure I do things at sensible times. Skype lets you video-call people. Zoom is letting me speak at a conference and teach a class despite being trapped in my house. I’ve also scheduled coffee with friends, so I can hang out with them, even if it is virtual. I initially thought that this would feel very different from actually hanging out, but it feels very similar.
  3. Keep a bedtime and waking time – it’s easy to fall into the habit of staying up late and waking up late, but the further you get from a ‘normal’ routine, the easier it is for Coronavirus panic and immobility to take over. Even if you can’t sleep, it’s still important to keep those hours as best you can. I find white noise generators are really good for shutting down all the stresses that are wriggling round my head when I can’t sleep.
  4. Get out of bed – if you’re able to do this and have anywhere else you can work, do that. Working from bed is going to affect your sleep schedule, you’ll feel dreadful, and it’s not going to help you work effectively. If you can’t get out of bed or have nowhere else to work, remove your covers, put pillows to sit yourself up, and use a different lighting space, so you don’t feel like you’re working from bed.
  5. Communicate with the people you live with – what do you need from them in order to cope with the isolation. How are you going to share joint space in the house if one or more of you have to work? How will you cope around those niggling habits our friends have that bother us? Who is going to use the kitchen when? Discuss these things and write down what you agreed, so you can all stick to it and there won’t be arguments about what you agreed later.
  6. Pick projects – is there anything major you’ve been wanting to do around your house? If so, break it down into neat little lists and working your way through them. Clearing your living space and making it better organised will also help clear your mind and make you feel better in that space. If you listen to music or do this with someone else, it can even be quite fun.
  7. Develop different types of productive hobby or decide to improve something – when I was in hospital for 6 months, I learned to cross-stitch. It was good to do when my hands were working but I wasn’t feeling well enough to do any real work – and this time with coronavirus I’m learning sign language and (when the fabric arrives) embroidery. This will hopefully keep me mentally busy, especially as they’re both things where I can observe the improvement I’m making in them, and where there’s a clear end goal or project. They’re also very different types of hobby, so hopefully will fulfil different needs in me. Duolingo is great for noticing that you’re making progress at something, and I really recommend it.
  8. If you can exercise, do so – whether you’re walking round your house, doing bodyweight workouts, or finding yoga on youtube, keeping physically active will help with your motivation and sleep schedule. If you can’t exercise, remember to keep up with whatever movement you have, keep doing your physiotherapy etc. Being on isolation isn’t an excuse to stop this.
  9. Find ways of rewarding yourself, and rewards to give yourself – whether doing your hobby is a reward for yourself, or whether you want an early night, a long bath, or a run, doing things that are nice for yourself and that you’ll really enjoy will help you feel better!
  10. Make regular time for messaging and calling friends – make regular coffee, dinner, or film dates with friends, and then hang out with them. This will help you feel like you’re socialising, and means that you can support each other if you’re not able to see each other.
  11. Find ways of differentiating work and pleasure – try and work and have fun in different places completely. Don’t play mobile games while you work – if you’re working you’re working, and if you’re on a break then enjoy it, but don’t mix the two up.
  12. If you’re an unemployed freelancer, upskill – when you’ve got no work to do, it can get very depressing as well as very poor. Decide you want to be in a better position for work when isolation is over. Learn new monologues, audition pieces or music. Decide to write something creative each day, or read books about these creative pursuits. Don’t get lax and lazy, decide you want to come out of this improved and all prepared for all the auditions and work you’ll get when this is over.
  13. If depression gets you down – cancel work (unless it boosts you) and decide to take some time for yourself. Don’t reach breaking point, just observe how hard things are for you for a while, then engage in things that often make you feel better. You may well feel like they’re not helping or like you feel so dreadful that nothing could ever make you feel better, but give it some time and they will often begin to make you feel better bit by bit.
  14. Get outdoors if you can and get planting – if you can get outdoors and stay 2 metres from anyone, while keeping moving, this is probably quite safe. Spending time outside is good for you, and if you’ve got any any capacity for planting do so. Whether this is indoor gardening or window boxes, balcony plants, or a proper garden, spending time with it will make you feel better. I’m planting veg on my balcony railing and it’s really helping to know I’ll have fresh vegtables and salad that I grew myself to feed to my loved ones
  15. If you need help, ask – it’s a difficult time and people are understandably struggling. I’m getting very depressed and anxious about it, but I’m reaching out to friends, scheduling virtual coffees, and trying to focus on my hobbies as well

Dissembling Nature @ Deptford Literature Festival

Deptford Literature Festival Dissembling Nature Banner

I am very excited to be leading a workshop titled Dissembling Nature as a part of Deptford Literature Festival – it’s going to be great, and I really encourage you to book tickets (to everything else, as well!). I’ve been passionate about nature poetry for ages, and this is an opportunity to unpack the genre and reinscribe it with non-normative bodies.

The domain of nature poetry is often seen as the possession of the pastoral and romantic poets – Wordsworth observing it as his own. This style of writing posits (white, non-disabled, cis, straight) man as lord of all he surveys.

How can we, as readers and writers, dissemble that methodology, to instead write about nature from a perspective that includes humanity as a part of nature, and explores the impact we have on it, as much as the impact it has on us?

From Joy Harjo to Mahmoud Darwish, Ernesto Cardenal to Joan Retallack, Natalie Diaz to Paul Monette, this workshop will explore non-normative nature poetry, climate change, and the role of the poet, to both explore other people’s work and create our own.

If you’re interested in nature, bodies, or climate change, you should consider coming!

Now is a time for artists; now is a time for heroes

And collectivity – collective art, and collective heroism.

A gorgeous sunrise over Stonehenge
The sun has risen here for thousands of years. Hope always remains

The views in this article are entirely my own and do not reflect that of any organisation I work with. They should be considered reflective of my position at the time of writing, which may have since changed.

We don’t have much time. The ice is melting, and people are dying.

The news scroller in the hospital tells me that the pound is surging and the stock market is rising now the Tories have won. It tells me that the Democrats intend to impeach Trump. Trump has struck a trade deal with China, and humans are responsible for making American parrots extinct. Progressive hope seems downtrodden, and my friends are all looking at each other while we try to make sense of what happened. Nobody knows how it went so wrong. How the country voted for such a monumentally destructive course (in my functionally middle-class remainer position). We all have suspicions.

The world feels hopeless. Between Trump and Bolsonaro, Johnson, Jinping, Modi, Putin.

Now is a time for artists; now is a time for heroes.

We can be those heroes. We can make the art that the world demands, we can build those bridges between people, experiences, hopes, and desires.

Maybe it’s naive of me, but I believe that most people are open to this, to some degree. Maybe I’m naive in wanting to do that work, in wanting to open myself, my heart, my queer, trans, crip body, and invite people in. Maybe I want to talk about what it means to be a benefit scrounger to people who speak disparagingly of us. Maybe I want to answer these questions so nobody else has to.

Maybe I want to make the art that centres on these experiences from my perspective, whilst reaching out to other people. Maybe I want to ask for their stories, backgrounds, beliefs, and experiences and write work that welcomes them in. I want to write about people like myself and people not like myself. I want to learn to make the art that the world needs, in the time that it needs.

We lost this election brutally. We failed to reach out, and to be reached out to. A whole proportion of the population feels abandoned, whichever way you look. Racism and bigotry are on the rise, and as artists we have an obligation to respond to that. To highlight it, or to resist it. To write about it or against it. And over, and over, to refute it. To say that people can, and must, be better.

As artists, this is our time, if we are bold enough to grasp it.

We need to commit to regular practice on days when the grey cloud hangs so low our minds seem to be swallowed by it. We need to talk and hope a future, and we need to art it into being. When we feel like we cannot go on creating, we cannot go on at all, we need to reach out to other artists.

We need to build resilient communities and communal working methods that can last beyond the immediate crisis to look at the future. We need to not be destroyed by bad news, when we are stronger than that.

We need to ask better of ourselves and the people around us. It is an act of love to challenge someone, to ‘call in’, to understand why they behaved a certain way, to support them in understanding our reaction. It is an act of love to trust someone enough, and trust your friendship enough, to challenge them. It is also an act of love to accept that there are always ways we could all always be better. We could always read more, write more, learn more.

We are artists. We have the duty to bear hope

We need to look at reality and promise hope. Not the easy hope that says “do nothing, and the world will improve” but the challenging hope that gives us the courage to do the work, day after day, week after week, month after month, and year after year. The challenging hope that lets us look at the world, clear eyed, and see how we can make it a better place.

We can, because we must

We can because there is no other choice

We can, because we love