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Life in Lockdown - Lizzie’s story


Journaling Lockdown: “Only”

“Only the Elderly and those with Health Conditions get it badly” – this was the mantra from the initial outbreak, and it persisted through to even now, post the first peak as lockdown has been eased.

 I first heard it in my flat kitchen when the first two Covid cases were found to be York students. With two student nurses in our flat and with Covid being a “casual interest” topic of conversation for everyone - I heard it a lot. It was said to reassure the able-bodied 18-year-olds I lived with. It’s not that those with health issues are naïve to our differences to able-bodied people, it’s obvious in day to day life. Whether it’s what we can do, eat, what our bodies can take, or assumptions people have on us. I am fully aware of my experience interviewing for a job or applying to a uni is different, I have to convince people I am as least disabled as possible – the closer you can make people perceive you to be able bodied the better your chances. The frivolous freedom some students are able to indulge on their bodies the late nights, consuming vast amounts of alcohol etc is a world away from those with health conditions, it’s a very different experience and existence. And although I knew a disabled body is treated with less value because I have seen how structures are built to exclude us, and I knew people didn’t understand us – any person with a health problem isn’t naïve to that divide… I’d never really been acutely aware before of the direct lesser value of our mortality.

From studies, day-to-day life and media, this should have been no shock. There was prior evidence in our treatment and our invisibility. However, I genuinely hadn’t felt so the disparity being so stark and unapologetic before. The “general population” felt reassured by our risk of at worst Death, because they felt they were so different from us and inevitably they can only have found reassurance in that if on some level (conscious or subconsciously) they believed our lives mattered less. When they spoke of herd immunity what they really meant was survival of the ableist.

It’s very bizarre to be in a kitchen where everyone else walked away from that conversation feeling safer, reassured and happier for knowing they were safe because they weren’t like me – and I wasn’t sure what I was supposed to take away from that. It was being used to calm the nation, on media, the news, TV etc. Even our politicians, our health care representatives were saying it.

To be clear – it is in EVERYONES interest that we know who is at risk. This is crucial data to keep people safe. My issue was with how that data was used. The use of “only” in particular.

The “Don’t worry” was troubling, that the lesser risk to able bodies should lessen their concern over the Covid-19 pandemic. The assumption that the able-bodied were those in need of and deserving of mental support. I can’t remember seeing any offer of reassurance or support for the mental wellbeing, the fear that was being experienced by our elderly and vulnerable. There was an assumption that us vulnerable either wouldn’t worry, “that’s just their lot” approach – that we were so used to lesser treatment and standards that we wouldn’t question or resist against this risk to our lives. It was assumed we wouldn’t mind – we hear the voices of mums worried about their able-bodied children going back to school, I haven’t heard the fears from the care home residents, those shielding, not to the same extent at least. At maximum I’ve heard the company spokespeople – able bodied and while I’m sure provide brilliant care, have financial investment in their residents’ wellbeing.

I find the notion that those who are ill or elderly dying from a virus (sometimes unnecessarily) challenging. If we are going to talk straight (insert uncomfortable warning here) – the reason is that it is perceived, we are closer to Death. It is a tragedy when a young or healthy person dies, it is often called a “waste”. This is said because they had a perceived longer amount of life left with more quality of life to live it. But, to speak bluntly – everyone is also dying, everyone who is able is only able bodied temporarily. Disability in form reaches all people in the aging process, that’s natural. We as people choose to study and practice medical care because of our desire to prolong life. So why with this desire and fascination with prolonging life, when someone’s disability becomes apparent did it feel like it was no longer worth fighting for. Medicine isn’t merely preventative? I do not speak of the Doctors care here I am purely referencing the perception on society on the value of saving disabled lives. Why wouldn’t the loss of our lives be a “waste” (suggesting there was so much life value) instead we are “only” (diminishing our lives value to singular and of no concern or relation to others. Our lives are separate and small).

 

“Only” means “no one and nothing more besides”. It separates and isolates us from society, and as long as we were “only” that meant by definition it wouldn’t reach the able-bodied. No one’s death or health risk should be described as “only”. You *hopefully* would never hear “Don’t worry, Only Sarah died from Covid”, the idea that any life is a greater or lesser life. It felt very dystopian, neither historical nor futuristic because that approach to disabled lives has been consistent throughout history. Perhaps with disabled or elderly it’s because they don’t see our faces, or it didn’t affect them. I saw people who were partying non-socially distanced until it dawned on them the “elderly” included their Grandma … when it touched their life in some form suddenly the Grandma’s value of life increased. That increase still didn’t necessarily extend to other elderly people. Our whole country was describing us as “no one and nothing more besides” … and this brought them a collective comfort.

Sensitive speech is lacking in many areas and on a realistic note, I and no other person affected would expect individuals to not misspeak or display these thought processes, because if they aren’t affected we can understand and are very used to people at times overlooking our experience. Though I can only speak for myself, I’d say there’s a general patience and understanding for these incidences as unfortunately for disabled people they are part and parcel of daily life, to an extent sometimes we don’t even notice them. How can we expect the people around us to be educated on this when the media reinforces it?

Media’s unapologetic sharing of this mantra is troubling on many levels:

  1. The most obvious as I’ve already mentioned is the content and thought process behind the lessening of value of one life and using that to reassure another.
  2. The sharing of this in newspapers, TV, the News. This raises several troubling assumptions. First that they assumed disabled and elderly wouldn’t be upset by this (they don’t value their own lives or shouldn’t). Alternatively - they didn’t care whether the elderly and disabled were upset or did not even consider their emotional reaction at all. Thirdly, they assumed elderly and disabled wouldn’t see it. They assumed and create content for a perceived audience of able-bodied people. I don’t believe those messages were meant to be heard or for the benefit of the elderly or disabled.

There is the assumption behind the wide publication of such comments that the vulnerable would be less likely to read, watch and educate themselves on the goings on in the world. This is a common conscious or unconscious bias against vulnerable adults: lesser intelligence, understanding or engagement, acceptance of “their lot”. I don’t believe, in some cases, the audience of vulnerable adults were even remembered. The rhetoric perpetuates the idea in public and private spheres – it implies that this view is supported by those in power.

As I said, we were not naïve before – but I don’t think it’s possible to unlearn that when crisis strikes my mortality is expendable in a way yours is not. We are used to the differences (and this familiarity with our different experience probably means we accept them more than we should), we will reunite with our uni friends and say nothing of it but now we know that there is an unspoken order and I think that will always sit with us.


 

Journaling Lockdown: “Waiting”

Lockdown has been a time of huge anxiety for a lot of people but in particular I have seen how people with disabilities and health conditions have been affected.

At the best of times, the NHS can only do it’s best to help us and often with complex health issues we have long waiting lists, medications that don’t work etc anyways but the shut down of hospital resources so that they can be redirected (rightly so) towards Covid efforts has had a bigger impact than I think many of us could have foreseen. Personally, my chronic condition had deteriorated massively leaving me bed bound and in constant unbearable pain, in addition as my body weakened and was overwhelmed by the pain other organs began to be affected. I experienced constant infections and my usual sickness escalated to no longer being able to eat, I would retch even trying to swallow food.

At the beginning of lockdown, I was still working a job remotely (employed by the uni) which was leading up to several very important presentations to summarise and present our findings from that year of work. Additionally, though uni was closed we were still being set work and lectures to complete and interact with remotely. Before a meeting with my work I had to email our meeting’s chairs to explain I could not talk that day as some medication I was having to take was making me throw up every ten minutes or so. It was incredibly frustrating and disempowering. With chronic pain and the high levels of codeine levels I need to keep it bearable, both severely impair my cognitive function. The best way of describing is if someone asked me “what is 1 plus 1”, I hear the words as sounds and cannot attach meaning to them. I hear one word then the next and by the time they reach the end of the question I can’t remember the rest of the words I need to make sense of what is being asked, let alone answer. It makes no difference how simple the words or content is, when I am unwell, I could not answer you “what is 1 plus 1”. For a student, someone who enjoys and values academic progression and ability this is very hard to mentally deal with. You know you “should” be able to answer these things and in different circumstances would find the tasks easy and yet in this moment you have lost those abilities totally. The impact academically was that I have not yet been able to begin my uni reading for next year or watched my last two lectures of this year. I and many others with health issues often work by what I call “safety net”. We work extremely hard, do all our work and reading as ahead of time as possible so that when inevitably our health fails us, we have a safety net of pre preparation to fall back on. The summer is a crucial time for me to get ahead for next year to make keeping up possible, but that time has been lost due to covid restricting hospitals on what medical support they could offer me.

Amongst other procedures I was waiting for a Gastroscopy to take biopsies. Unfortunately, that was up there with some of the most strongly avoided procedures due to the covid risk of leaving the throat vulnerable to covid or infection. So, I needed to wait several months. I was also waiting for procedures and scans for my established long-term conditions (Deep Infiltrating Endometriosis – I do not use the acronym DIE as it is slightly unfortunate… I am sure that wasn’t entirely thought through!) Multiple issues, tests, procedures were building up and while everyone else was focused on Covid all I could think about was one appointment to the next. There would be weeks where I had something hospital related 5 out of 7 days of the week. Catching up the time academically that was either taken by health care or anticipation/recovery from them will be a very tall order.

I have seen how my other friends at uni’s have also been affected. Their surgeries postponed or receiving stressful news over the phone. We miss so much the in-person appointments. Especially when you are in a really bad way, you need a doctor to see you to get across just how bad it is and so get the help you need. Often our appointments are complex and involve lots of questions, discussions and decision making. For whatever reason, in person conversations naturally stimulate follow on questions and discussion in a way phone calls do not. It feels very checklist. You know you have very limited time, you may have been waiting for this appointment for months (one of mine I had waited SIX MONTHS) and you may not know when you will next get one again. You have so many things that have built up in that time, so we bullet point all the key points to cover. To be most effective we have usually already done our own (reliably sourced) research and it can feel like preparing for a court case. What is your evidence, what backs this up, do you have witnesses who can confirm this? We end up having to self-diagnose, find research papers which support us… I should not know the NICE 2010 Guidelines for my condition… but I do, and I have needed to. This is mentally, emotionally, and cognitively exhausting at the best of times! I work as academically hard researching my condition as I do my university degree and it does dwindle my resources and energy.

 But with phone call appointments, it can feel like box ticking – you go through your pre-prepared script speeding up as you feel the consultant or doctor trying to wrap up your appointment as they have to move on to their massive waiting list of other patients. It is hard to think or react like you normally would under that pressure. You come out of the appointment with so many questions never raised because you did not get a moment to think. You feel that you are less likely to get help because phone calls mean the doctors don’t see the person asking for the help, humanise them from the lists of requests and somehow you feel if they saw you they’d feel emotionally inclined to do better by you – whether that’s actually true or not. I wonder if similar issues will come with online supervisor or tutor meetings at uni? Will everyone feel unsure because of less contact hours, so the appointments become full and hard to come by? So, by the time you get your slot you have pages of prepared notes and questions which you tick off with little time for discussion. Because while those key points are the essentials – it’s the discussions that come from them which give confidence, reassure, uncover new answers and approaches and ideas and leave you feeling you came out with more than some ticked boxes.

I think the mental health of our disabled students will need support this year, many will have lost time to this pandemic which they cannot catch up as easily as their able-bodied counterparts. For many their health will have deteriorated due to postponed/cancelled surgical intervention, lack of support and medical guidance, struggles to access medication. Some will have been shielding, lost hard fought physical fitness and social, intellectual confidence which may take time to rebuild when they are thrown back into a more busy and fast paced society.

Many will be exhausted by the waiting, the unknown of when and if they will get medical help. We have our own communities too and we have had to watch each other struggle and deteriorate. We are not just waiting anxiously for our own help but each other’s too. When you have empathy for what someone else is going through because you have experienced it too it is impossible to not be on some level invested in their health too. Whether it is trying to support those who are new to their conditions – how much to tell them? Do you reassure but then they go in uninformed or do you try to keep a level of honesty and risk scaring them about e.g. the surgery they are about to have? There are hard calls and we feel a responsibility to help each other through it. Or you try to deal with someone else’s bad news without letting on that it scares you too. A close friend, the same age, with my same condition her biopsies were suspected cancerous, thankfully (sort of) they came back pre-cancerous and she is now being closely monitored which is the best position to be in if that is the case. But waiting for each set of results we wait together its impossible not to experience what they are going through very vividly while also feeling a vulnerability/ new exposure from realising this could happen to you. Processing those emotions privately but then also feeling guilty for momentarily making it about you! Lockdown has not been a time of rest emotionally, mentally, or physically for those with health conditions or disabilities. I imagine inevitably at some point we will reach exhaustion and need recovery time. While other people’s lockdown has also been waiting for things to start back up, those with health issues have been waiting and working incessantly simultaneously. So, when we do reach a point that where we either choose to rest or must, I hope everyone else and our uni will wait for us.


 

Journaling Lockdown: “Rebuilding”

I think a lot of us, especially those with health conditions have lost confidence. Our symptoms have flared and our structures in place to help us function have disappeared or become unreliable. The idea of hitting 2nd year running now is a very daunting one. It feels like we need time to recover from what we have been through before we can even contemplate putting energy into academic work. It is almost like we need a reintroduction to Uni – the new Uni. In reality we had not even had half a year there before leaving again and we go back to something vastly different while also entering second year where suddenly all our work counts towards our degree. Those disabled students who have made it to higher education have had to work so much harder for the opportunity than an able-bodied student, so that win is not something we want to lose willingly. However, we will need support in order to continue. Hospitals waiting lists are likely to remain at lowered capacity for several years, those of us who were waiting before the lockdown still have not received everything over half a year on. It is suggested it will take two years to clear the backlog and for every day of that it will only add to the waiting list.

We time things very carefully in order to fit our health around able-bodied centric structures such as education. Unavoidably our timing has been thrown into a bit of a mess by the pandemic. We are not flexible because our appointments are hard to come by and often not movable. We have specialists, we cannot just see any GP in the country, so must travel home for medical care. For example, I will need a tube down my nose to my stomach for several days as part of my health investigation – this will now not happen until when I *should* be back at university. It needs to be in while I eat, sleep, everything … so is a bit trickier in a university environment. I need it put in and taken out by my specialist and the monitor attached given to the hospital. Given my hospital is four hours from university, the travel from this would be a lot and a massive interruption to my studies. I am also considering an operation which again will disrupt my studies and my ability to live for a time independently. Students with health conditions could really do with an automatically offered mentoring meeting to discuss challenges they will face to their education this year and how these can be minimised with the help of the university and/or other services.

Everything being disrupted, up in the air and the not knowing of when you will need to drop everything for that Gold Dust appointment is a massive distraction. I think disabled students will struggle more this year to settle into a routine and rhythm which is so necessary for us to keep up with our able-bodied peers. Living itself will be hard, with delivered food in higher demand we may struggle to access slots. Without food delivery I could never live independently. In some ways everyone having remote lectures does level the playing field for those of us who already had been missing them and relied upon online catch up anyway! I think for disabled students this may help us feel our experience is more “normal”. However, I will greatly miss the seminars. Students with health issues struggle to participate in lots of social events e.g. nights out, long day trips, sports. Seminars for me was something that was mostly manageable and was an opportunity to meet and see people. It gave me interactions and that improved my emotional wellbeing for even days after – I hope we can find other ways to study in a social way. I feel sorry for the freshers in their more limited opportunities to make friends, even my cohort only had the best part of four and a half months to make friends in a new area. Creating social opportunities will be so important to the wellbeing of our university in the next year or so.

Reading lists have not been read, we are very much at best treading water. I am wondering if the gym will be as easy to use with new restrictions and living out. Physical fitness is essential for coping with my chronic health/pain and also became a real positive coping mechanism from all kinds of stresses at university. When you have a disability or health condition, it is not just about your academia – you are a whole body and if anything does not work then everything is affected. When I cannot get food deliveries I can’t live at university, when I can’t access physical fitness then I can’t manage my condition and wellbeing, when I can’t socialise then I lose my rest time. For me, sitting on the sofa, bed, watching a film is not rest like it is for some people. I have constant excruciating pain so doing nothing and sitting with it does not bring me any rest or relief. My rest and relief come from the happiness and distraction socialising with people brings, or submitting a university assignment I am proud of, or working on a project I feel helps others. We need these things to cope with our health – it all interacts.

A friend and I really felt our disability during a wave of BLM protests in our area. These were organised by our friends and attended by even more. For us who would usually be involved, having to shield due to health needs was very disempowering. We both felt useless and also embarrassed, despite those around us knowing why we could not come. We found our way of supporting through sharing online and drawing attention to the protests, but it still highlighted our disability and lack of control over our own bodies. We felt very helpless and it was sad. My friend had a different experience in that while she also had to shield, as a black woman she felt deprived of the opportunity to stand. I cannot imagine how she felt. However, we have found our places! Both of us have recently featured on a series of BLM podcasts, so had the space to stand and show solidarity there and it did help having each other to experience not being able to go to the protests with. If a second wave does come, and some of us are encouraged to shield again – it will be so important to find ways for those shielding to still feel part of the world, find their purpose and their impact. We have come a long way in distance working and communication. We must remember this and continue to develop new ways for those who will stay more isolated (long after the pandemic ends) to not only access the able-bodied world but be allowed to contribute and become leaders in it.