I’ve written a lot about how non-disabled people should act to intervene when people have chosen to hold events in inaccessible venues*, but I thought it was time to make a personal case as to why this matters.
I’m in a wheelchair. My condition has caused progressively worse weakening, so I’ve gone from ‘limps over long distances’ through losing ambulation, to being a full-time paralysed wheelchair user. This shouldn’t matter. Of course it’s mattered on an emotional level – and yes, it’s been both a journey of loss and a journey of self-discovery – but it didn’t need to change my life to this extent. Being in a wheelchair limits my opportunities far more than the contours of my body do. This isn’t a result of me, it’s a result of individuals and organisations piling choices on top of choices, each of which excludes wheelchair users, until the mountain of choices to exclude us threatens to choke my life.
Because of these limitations, I have concrete losses. Opportunities. Friendships. Chances. These limitations aren’t accidental, they’re the result of decisions people have made. Those decisions have been to deprioritise making events accessible to wheelchair users. This means that those events have functionally prioritised non-wheelchair users. Have played into overwhelming power structures in society that exclude wheelchair users.
Example: UCL Policy and Practice. A series of lectures, talks, and research presentations on current issues in policy – the field I want to continue to study and work in.
Loss: Because I was barred from attending those lectures for being a wheelchair user, I lost out on networking opportunities. It is those networks that give people the chance to find internships, contacts, and jobs. But only if you’re not in a wheelchair, clearly.
Example: London Queer Writers Speak= , Featuring Remi Graves, Marie Marshall & Calu Lema. An event (called ‘speak equal’) of poetry performances and open mics that “showcases and celebrates LGBTQIA poets and spoken word artists whilst offering professional guidance and support for artists looking to develop their performance and writing practice”. When I asked about access and a friend followed it up, we were told “regrettably this space is not wheelchair accessible unfortunately as we will be in the upstairs room“.
Clearly they didn’t regret it that much, or find it that unfortunate, as they are “proud to call this our new home because we have use of: the beautiful upstairs room with big windows“. They market their space on its lack of wheelchair access.
Loss: The opportunity to see some excellent poets perform, and perform in their company. The chance to network with other LGBTQIA poets and spoken word performers, to make friends and build conscious networks.
Example: Queers without Beers, a social event I wanted to go to, as a disabled person who rarely drinks and wants to foster a sober social network and lifestyle. It chooses to base itself in a wheelchair inaccessible venue. The access statement says “this is an old Victorian building which comes with its own constraints”, but doesn’t point out that it chose that building and those constraints
Loss: build mindful community support network
When people who aren’t wheelchair users attend and participate in events that have chosen to use venues that exclude wheelchair users, those people are building their careers, networks, and friendships on our backs. I’m certain that for many it isn’t a deliberate choice, but that’s the result – networks of people who have “ambulant privilege”, for lack of a better phrase.
This is framed as neutral but it’s a decision
It is a choice for events to use those venues, and it is a choice to attend those events. As a queer/trans poet I know some aspects of the poetry scene feel hostile to me, and I would love to retreat to build and create in a collective of fellow LGBTQIA+ poets. However, I can’t because that space doesn’t welcome non-ambulant poets. In an effort to create a space which is safe from the overwhelming weight of hetero/cis privilege, a space has been built which replicates disableism.
It is a choice for me to hold those events accountable. To tag events, whether they’re my university (UCL), or other LGBTQIA+ poets and communities. It’s not a choice that will make me popular – nobody enjoys being called in, or held to account. However, these are the words I have to say.
Please raise your voice on this. At the least, even if you plan to attend anyway, ask events whether they have considered wheelchair access. Encourage them to do so. Hold them to account when they do not. If spaces are not accessible, wheelchair users will continue to be disappeared by a society that builds itself to exclude us. If everyone demanded that events were accessible, accessibility would become built into our society, but if ambulant people don’t demand wheelchair access, it won’t happen. You have the opportunity to change this. Have courage. Speak up. Join me.
*In the first draft of this post, I wrote “when venues aren’t accessible” – then I realised that the problem isn’t that venues aren’t accessible, it’s that people have chosen to use inaccessible venues.
Last week I wrote about the ‘medical model of disability’ – a way of understanding disability as being fundamentally a medical problem. I discussed my criticisms of it – I talked about how disability has shaped me and isn’t a tragedy, and about how the problems that really affect my life are often about the barriers placed in my way – not my body at all.
The social model of disability was designed to look at disability from an entirely different angle, and to focus on the things society prevents people from doing, not the things our bodies prevent us from doing. It does this because activism can change society in a way it can’t our bodies.
The social model
The social model of disability is a completely different way of understanding what it means to be disabled. It starts from the barriers disabled people face in the world and focusses its energy on dismantling them. The social model distinguishes between impairment and disability in a way that can be initially quite confusing.
It sees impairment as a defect, difference, or lack in function as compared to people society considers not to be disabled. This means that the fact that my legs don’t work is an impairment. So are my learning difficulties. The fact that I need glasses isn’t an impairment – because society has adapted itself to people with slightly poor needing glasses. Its definition for non-disabled includes people who need glasses, as long as they don’t have significant visual impairment.
It then defines disability as the additional limitations put on people with impairments. So I have the impairment that my legs don’t work, and I am being disabled when I try to go to a shop but it’s up a step with no ramp. The problem isn’t my legs not working, it’s the lack of ramp. People are being disabled when they’re passed over for a job because of a history of mental illness. I am being disabled by being expected to sit through a 2 hour lecture, rather than lots of short segments with breaks. People are being disabled when a promising treatment exists for their condition but they’re being denied access to it.
Some people would argue with me on that last one – they would say that the social model focuses on barriers that arise from peoples’ impairments, not on access to medical care. I believe that access to adequate medical care is very much a social model of disability issue.
When I needed a smear test, I couldn’t have one done at my local surgery because they didn’t have a a hoist to get me onto the bed. It was gently hinted that “did I really need a smear?” but I was lucky enough that they decided I did, and fought for me to be seen at a hospital where there was a hoist. When I had it, it came back abnormal, but luckily the repeat was normal. Many disabled people are barred from access to smear tests entirely – they’re told that their local surgery can’t meet their needs, so they won’t be receiving one. Here, disabled people are being asked to take on significant health risks in skipping a smear test; they’re facing barriers non-disabled people aren’t asked to face. This is an example of people with impairments being discriminated against – being disabled.
The process of being disabled is that of facing barriers that non-disabled people aren’t asked to face. Barriers that prevent people from participating fully in the world. The social model inherently encourages us to try to tackle those barriers and change the world – it’s a very activist model.
The social model has limitations. It’s relatively recent that it’s paid attention to another category: impairment effects.
Historically, the social model has always resisted the idea that there could be anything difficult about having impairments. This is because people have worried that if we talk about difficulties with impairments, people will start talking about treating those impairments, rather than removing the barriers that prevent us participating in the world. People have also worried that if we talk about the negative aspects of impairments other people will then say “see, we knew how dreadful it was to be disabled, the poor souls” and look at disabled people with pity, rather than looking at how to remove the barriers we face.
However, it’s important that we acknowledge that there can be difficult aspects of having impairments, in and of themselves. For example, my condition causes me quite a lot of pain. Being in pain is unpleasant. I would rather not be in pain than be in pain. Similarly, I have limited energy, and I would rather not have limited energy. This does not mean it’s dreadful or tragic to be disabled, but it does mean there are aspects of having impairments that can be hard – impairment effects.
The social model isn’t perfect. For example, in its original version, it doesn’t acknowledge the extent to which impairments themselves change, mutate, progress, flare, cause chronic illness and unpleasant symptoms, and relate back and forth to being disabled. This can get confusing. Being disabled can worsen your health. For example, I was forced into an inappropriate wheelchair to enter an inaccessible house, which has contributed to a worsening of my contractures.
I didn’t like the social model initially, because I felt like it undermined the importance of my own relationship with my body – it told me that being disabled wasn’t a bad thing, at a time when I struggled with it a lot. Only when I understood that the social model wasn’t about my relationship with my body but society’s relationship between people with impairments and a disabling world did I start to understand it.
In the same way as the ‘personal tragedy’ model is an application of the medical model of disability to peoples lives, the ‘affirmative model’ works as an application of the social model. It acknowledges that impairments are a part of who people are, and that although we should focus on eliminating barriers in a societal sense, we can also accept that having impairments and living in the world can be a part of who people are. The affirmative model would understand that even though I struggle with my impairments, they’re a part of who I am, and I like and am proud of being that person.
The social model works well in an academic context, and as a way of understanding service provision. For example, social care and benefits should be provided on an understanding that they are mitigating the impact of an inaccessible world. At the moment there’s a very charitable model – that we’re given these things because we’re needy and society is nice, when instead they should be given to us because we’re in an inaccessible world in which we can’t participate without those things.
It doesn’t always apply to the life of an individual so well – because it wasn’t designed to talk about how I relate to my body. It was designed to talk about how society relates to disabled people – and it does that very well.
Featured image credit: Robot Hugs, 2013
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 truism that were mental illness treated like physical illness, people would be better understood, taken more seriously, and believed more often is constantly repeated. The problem is… it’s not true. We have a natural human tendency to think “the grass is greener on the other side“, but that often misleads us to overestimate the disadvantages of our current situation, and overestimate the advantages of a different one. We think that we’re in a dreadful position, and thus that those people over there have it better than us.
Therefore people write posts about mental illness comparing it to physical illness – that were their depression instead cancer, people would come running to support them. That if they had their suffering marked visible on their body, people would help them, they would be taken seriously, and the world would understand.
I sympathise with that. One of the hardest and most isolating things about mental illness is that, despite platitudes from friends, you’re often left to suffer alone. It can start to feel like that isolation is a result of a ‘hidden’ nature of mental illness; that test results, scans, objective findings would bring you a more supportive group of friends, a shorter waiting list, better luck at treatment. When you don’t have any of the resources you need to manage your condition, it can be impossible not to believe that those other people don’t have it easier at all.
The moment people start talking about how if mental illness were only physical, people would take it seriously, they betray how little they know about physical illness and how people are treated on those terms. The waiting lists are often as long. The doctors and nurses are often as harried. The treatments are often as experimental. People are often as unsympathetic.
I’ve lost a lot of friends to my illnesses. I’ve learned that friends don’t keep coming running crisis after crisis unless I’m there for them – unless I sometimes stay up all night with them too. And this is hard – often illness has prevented me, and by the time I’ve been well enough to reach out people have drifted away. I’ve been too depressed to answer a message for weeks and lost a friend. I’ve learned that there will always be some people who don’t take you seriously, who can’t or don’t want to listen, learn, and support you. This isn’t because an illness is physical or mental, it’s because not all friendships can survive the strain serious illness puts on them.
I’m tired of people living with mental illness looking at me and thinking that in some way I have it better than them. I don’t. I’ve been on both sides of this fence, and that’s where I’m writing from now. We need to find better metaphors for the pain of feeling abandoned by the medical community that don’t assume that if only we were treated like physically ill we would be treated better.
Let’s draw out the parallels and differences between our experiences without relying on assumption and stereotypes. Explore ways of discussing what we’ve lost and how we’re struggling with isolation that realise that we’re very often in the same boat. Ways of building commonality and community between mentally and physically ill people, of supporting each other. We don’t need to be set up in opposition.
But please: stop saying that if only you were physically ill, things would be better
Care agencies are the bedrock of the care sector. They tend to be companies, which employ a large number of carers. They then have clients (disabled people) who contract to buy care from the agency. Sometimes this is done by the client themselves, and sometimes the contracting is done via a “brokerage firm” or your local social services. The agency then takes responsibility for all the employment management, and simply sends you a carer at the agreed time and place (in theory).
If you do not use direct payments or a personal health budget, your care may be being organised for you, without you having any say in it. This is often done through agencies, and means that you only have to receive your care – you’re not responsible for making it happen.
I’ve used agency care on and off for years, usually in the same situations:
- I’m being discharged from hospital, and need to have care organised. Here, I don’t have the time or ability to recruit for PAs, and need someone who can carry out an assessment of my needs while I’m in hospital, and provide the care reliably when I get out
- I’ve just moved house and need someone coming from the date of the house move, without me having to recruit in an area that I don’t live
- I only need someone coming in for an hour or two a day, and I’m struggling to recruit anyone who wants a few hours
- I need someone coming in at really early or late hours and I can’t find anyone who wants to work them
- I’m too ill to manage PAs, and cover failing would put me at serious risk. Here, I need to hand over responsibility for everything to a care agency
The advantages of agency care are that:
- They employ a lot of people, so if someone’s off sick, they’re responsible for arranging cover and are able to do so
- They are responsible for training their carers, so we design a care plan based on my needs, and I’m sent carers trained on meeting those needs (e.g. hoisting)
- Because they employ a lot of people, they’re far better at finding someone who wants inconveniently timed hours
- Because they provide care to lots of people, with one employee travelling around to lots of clients during the day, they can come in to provide a very limited amount of care
- If there are problems with the carer I simply have to report it to the agency, who will try to resolve the situation
- I am not responsible for any of the legal aspects of employment – I didn’t provide their contracts, and I’m not responsible for disciplining them if there is a problem
The disadvantages are that:
- I don’t have a free selection of anyone from whom to receive support. I have to negotiate with the agency but ultimately I get whoever they send
- In practice the wrong carers often arrive at the wrong time with the wrong training
- Carers are often in a hurry because they’re allocated inadequate travel time between people, meaning that they need to leave early to get to their next job on time
- If I have issues with the carer, I have to go via the agency, who may or may not take my side
- I am not responsible for any of the legal aspects of employment – I didn’t provide their contracts, and I’m not responsible for disciplining them if there is a problem
I have very mixed feelings about care agencies, and have had excellent experiences, dreadful experiences, and a lot of pretty miserable experiences. They fill a vital role in the care sector but often lack consistency of support. They did not seem reliable enough to be the core options for me, especially as I have complex tasks like my bowel program, (peristeen), which many carers haven’t encountered.
I don’t currently use agencies, and while I miss the lack of responsibility, I prefer the amount of autonomy I have now.
In my next blog in this series, I will discuss how to choose an agency, navigate the relationship between you, the carers, and the agency, and what to do if things go wrong.
There are several ways of understanding disability. These are called ‘models’ because they’re ways of looking at the world and understanding it. When considering what we mean by the word ‘disabled’, it’s important to look more broadly at the ideas behind the word. The ‘models’ of disability are ways of understanding what we mean when we talk about disability. They look for patterns, and then describe those patterns.
One of these ways of understanding disability is the ‘medical model of disability’ and that’s the focus of this blog. This sees disabled people as broken, and in need of repairing to a ‘normal’ state. Where we can’t be fully repaired, we should be accommodated as far as possible, but we are the deviation from the norm. It focusses on finding treatment and cures for disabled people, but where that can’t be done, it sees disability as an individual issue.
As someone who struggles with pain and fatigue, and with the progressive nature of my illness, I used to be very fond of the medical model of disability. I desperately wanted a cure – and in many ways I still do. As I lose abilities, my body prevents me doing many of the things I loved. I feel, in some ways, like I’m fundamentally broken.
I know a lot of disabled people feel similarly, and many like the ‘medical model’ for that reason. When your problems feel like they primarily come from your body not working in the way that you would wish, it’s reasonable to like a model that focuses on that, and on the treatment and cure you need access to.
However, I’m now very critical of this way of understanding disability. I once had a sudden brainwave in which I realised that these ‘models’ aren’t about my individual relationship with my body and how it works, they’re about the relationship between disabled people as a whole and society. That relation isn’t defined by the limits our bodies put on us, it’s defined by the things an inaccessible society prevents us from doing.
The medical model also sees being disabled as something inherently bad, which I don’t agree with. I have diagnosed learning difficulties, but I don’t see them as a bad thing. I see it as a problem that the world is built in a way that doesn’t work for me, but I wouldn’t get rid of those learning difficulties. While I struggle with attention, concentration, and visual memory, and my fluid IQ is low, I have great spelling, great word-memory, and my crystallised IQ is high. I find it difficult that, for example university lectures often last two hours – I’d do far better with 8×12 minute sessions, each followed by a 3 minute break, but I like having a brain that works the way mine does.
The world also sees my physical conditions as tragic – what we sometimes call the ‘personal tragedy’ model. It would see it as a massive waste – but the reason I’m doing well at my Master’s is because I understand health policy from the patient perspective better than other students. The reason my solo show is so great is because it really plumbs the depths of illness to find resilience and joy. The experiences I’ve had have made me who I am – and I like who I am. I don’t think it’s a tragedy to be myself at all.
When I think of what it means to be disabled, I think of all the things I’m prevented from doing. I think about the shops I can’t get in. The employers that wouldn’t take a second look at me. The inaccessible London Underground. The attitudes, environment, and structures I face, and the way in which they impact my life. I know that I can’t change my body, but that changing the world would improve it for a lot of disabled people, not just me.
Next week, I’ll write about the ‘social model of disability’ and what ‘disabled’ means in that sense. I’ll talk about why that way of understanding disability makes a lot more sense than the medical way, and the options it offers us for looking at how to change the world.
My solo show, NOT DYING, tracks an emotional process of coming to terms with facing death, cheating death, and laughing at it, as I focus on living. It will be on at the Lyric Hammersmith on the 6th June and I’d love to have you there.
I’m really excited about this show. I started to write it at a time when I was very ill, and it’s followed my health on a very twisty journey as I’ve slowly shifted my focus from trying to change, heal, or cure the body I’m in to trying instead to change the world. I can’t find a cure for me, but I can ‘cure’ a lack of wheelchair access. The emotional journey between those points is at the heart of the show – and I’m really excited to share that with you.
If you want to catch this raw, brutal piece – come along!
It is a sadly common fact for disabled people (and in the context of this blog, specifically wheelchair users) to be blocked from attending events because of a lack of access, but whenever I discuss this with non-disabled people, they’re shocked that this happens at all.
A lot of people fall prey to the Just World fallacy and assume that in a universe consistent with their morals, the world would be accessible – but it isn’t. How do you act, from that moral perspective? What should you do when you see a marginalised group of people frequently barred from community events (e.g. queer events)?
The minute I start to complain about wheelchair access the alarm goes off in my head:
— “Don’t you think you’re being too troublesome Jamie?”
–“I’m sure there’s a reason they’re not accessible Jamie”
— “You don’t want to develop a reputation for always complaining Jamie”
— “Have you thought about how it might impact your career if you keep complaining Jamie?”
I’ve talked to other wheelchair users about this, and they completely understand this set of feelings. They’re instilled in us by a lifetime of fighting to exist in a non-disabled world where we’re permitted to exist on sufferance. We’ve learned not to complain too loudly (“aggressive“), too often (“moody”), too vociferously (“demanding”). We’ve learned to tailor our requirements and turn them into requests framed in polite language if we express them at all:
“I noticed that your event is running in a wheelchair inaccessible venue – I was wondering if you had considered maybe investigating moving to an accessible venue? It’s just that I might like to come, but I’m a wheelchair user and can’t get out of my chair or be lifted in…”
Always equivocating – hoping that those layers of language might make it polite enough to be permissible, rather than being straightforward and naming the exclusionary discrimination I’m experiencing.
“You have scheduled your event in a venue that openly prohibits the participation of wheelchair users and other people with mobility impairments. You are legally obliged to make reasonable adjustments, and those would include choosing an accessible venue.”
That still engages on a territory of politeness – reminding you about your legal obligations rather than your moral or interpersonal obligations to us as fellow humans.
“Why have you chosen to deliberately and openly ban wheelchair users from your event?
Because this is what the organisers of an event that uses an inaccessible venue have functionally done. No equivocating – through their choice of venue they’ve made it clear they don’t want people like me there.
As a trans person, I hope and believe that if a community-led disability event was scheduled in a venue that openly blocked trans people from using the toilets pertaining to their self-defined gender, trans twitter would be up in arms, and the venue choice would be loudly and repeatedly challenged – as it should be.
As a queer person, I hope and believe that if a community-led disability event was scheduled in an openly homophobic church, the queer community and our allies would be publicly criticising this and forcing either the original venue to change their position or the event to choose a new venue.
Maybe I’m overestimating the willingness of trans and queer events to challenge discrimination – but I really don’t think I am.
Why do events taking place in venues without wheelchair access not face an uproar?
Partly because this is perceived as a bricks-and-mortar issue. My two former examples require a change in attitude from the venue, whereas this example requires a physical change to the space, or a willingness to choose a new space.
This means that people will brush it off, and consider the lack of wheelchair access to be an apolitical and unlucky feature of the venue. If there’s truly an uproar, the organisers might apologise and say that they’ll look for a new venue for next time – but I’ve never seen this transfer into a new venue, all words, never action.
Partly because cheap and free venues are often venues that aren’t accessible. Finding a new venue that wasn’t homophobic shouldn’t be too hard, but finding a venue that’s accessible might be more difficult – and people don’t have the time or energy to do that labour – so they take the easy route, barring wheelchair users.
Rarely do people engage with the political and personal repercussions of preventing wheelchair users attending events, or what that says about the organiser’s politics.
If you run an event in a wheelchair inaccessible venue, you are making the decision to exclude wheelchair users. Whether you forgot that we exist (which is everyone’s excuse) or you decided that you liked the venue you’d found enough that our needs didn’t matter, you have excluded wheelchair users from participating in your event and you need to take responsibility for that.
That undermines any cross-liberation credit you might think you have. You can’t bill yourself as being an anti-oppression event while physically barring a subset of disabled people. Those things are not compatible (and I’m tired of people thinking they are).
If I complain, I’ll be the only one. I’ve had no response, I’ve had rude responses, I’ve been blocked. I’ve had torrents of abuse. I’ve had torrents of excuses. I’ve been called abusive. I’ve been accused of everything – homophobia, sexism, racism, biphobia, disableism – all for recommending events find a new venue. I’ve been told that there are no affordable, accessible venues anywhere in London. I’ve been told if I want them to move it’s my job to find a new venue.
So, non-disabled friends, what am I asking you to do?
I’m asking you to take this over. I’m asking you to stake your reputations on demanding wheelchair access. I’m asking you to tell events that regardless of whether they have disabled participants, they’re still morally and legally required to have disabled access. I’m asking you to refuse to read, speak, or perform at events without wheelchair access. I’m asking you to turn up at those open mic nights and spend your 3 minutes excoriating the event for not having access. I’m asking you to do the work of being an ally.
It’s easy to not-notice or to ignore the lack of access if you’re not yourself disabled, or not a wheelchair user. It gives you a simpler life. However, the decision to exclude sub-groups of disabled people has social and political consequences. It’s often Deaf people who speak BSL and use interpretation, and wheelchair users that are blocked from events, but where an event is a long way from public transport links, or doesn’t have great seating, people with pain and fatigue may be barred. If it’s in an unnecessarily loud venue autistic people may be barred. It’s worth considering these things when you organise or attend an event.
Events will always preferentially listen to the reasonable non-disabled person, not the unreasonable disabled person, so if we want change, this relies on your willingness to lift your voices in support of us. Places are often only going to change to another venue when it hurts their bottom line or their prestige to stay in the current one, and non-disabled people can really help here.
Events have a duty to make reasonable adjustments for disabled people, and this is an anticipatory requirement, meaning that whether there are any disabled people present or not, they still have to make those adjustments. Most of the time, using a wheelchair accessible venue would be a reasonable adjustment, in a legal context.
However, what matters more is the moral context. Do you want to support events that take a group of people who are already marginalised and oppressed in society, and make it impossible for them to attend? Because that isn’t the world I want to build. If you want it to be somewhere that doesn’t just replicate the old oppressions, here’s one place to start.
I am wheeled. My weight
in legs as flesh made solid as
half dead and half
alive as weakness but I.
I – my movement joy. My
leap up jagged kerbs. My
speed. I trail people; walking –
half running. Failing to
I keep going. I; after your hours
and blisters my battery runs
I speed. I swerve. I keep
on going. I keep on going.
I am wheeled. My movement
joy. My pace. My sleek metal
my rapid-fingered course-correction
Dance. Dance and run. Find joy
in every rolling motion. In every
single movement where flesh
meets metal and wheels; as if
my blood runs through each joint.
A friend recently asked me how I manage to not use social media excessively and balance energy requirements to achieve things I want to. In writing up my answer, I thought it might be useful for people other than them, so it became a blog.
I deal with quite significant energy limitations. While they’re better than they used to be (after a treatment was found for my adrenal issues) I’m still very restricted. Despite the improvement in my adrenal problems, I’ve been facing increased worsening of my condition in other areas, and I’ve had to work out how to balance my goals. To work this out, I asked myself
“what kind of a person do you want to be?”
“what do you want to be doing?”
That was a difficult pair of questions, because a lot of what I wanted to be and do was impacted on by my impairments, and I couldn’t see a way of having it all. However, asking myself those questions did let me see where I was going wrong (for me) in my short-term energy usage, and how to focus on my long-term projects.
I realised I wanted to be someone who kept up to date with friends, and was known as sensible and supportive, wise and compassionate. In order to achieve that, I had to keep an eye on their social media, message them regularly, and make plans with them. I had to do this even when it was inconvenient for me and I didn’t have much energy, because if I wanted the kind of friend who could support me, I needed to be a supportive friend. I wanted to be cultured, well-read, and interesting, which required me putting time into reading. Those became key priorities, because they spoke to the kind of person I wanted to be.
In terms of the things I wanted to do, I wanted to be working on my Master’s and related health and social care policy, I wanted to be creating poetic work on a regular basis including for NOT DYING, I wanted to be blogging. This meant that I had to put a significant amount of energy into those things, and formed the rest of my key priorities.
There I had five things that were going to be priorities in my personal life, so I ordered them in terms of focus:
- Keeping up with friends
- Working on NOT DYING, CRIPtic and other creative work
- Working on my Master’s
- Reading regularly
- Blogging regularly
In order to do these things, I had to have a very strict routine. Before I can do these ‘personal growth’ tasks, there are life-saving/sustaining/extending tasks I have to focus on every day, including medication, bowel program, feeding tube, and physio. These care tasks, along with washing and dressing as needed, became non-negotiable. I had to be doing those things as often as they needed doing (whatever timescale that was on). This is usually doing them in the same order at the same time every day, because even if I feel awful, not doing them will make things a lot worse. I had to be taking rest, using breathing support, lying in the dark, ignoring PAs, and using every other strategy at my disposal in order to achieve those things. If I let some of them slip, I end up hospitalised, at best, and the consequences can be life-threatening.
Once I’d done them I could put time and effort into the priorities I had set myself. I had decided that they were more important to me than casual social media usage, chatting to PAs unnecessarily and other ways of using time and energy that didn’t result in moving me towards my long-term successes. This made it a lot easier to focus on the things I wanted to prioritise. I might want social media scrolling and to chat to a PA like a friend, but I want to make a success of my bigger goals even more, so I decided that I was going to make short-term sacrifices (like social media) to succeed in my aims in the longer-term.
This is a balancing act. If I overdo it, or don’t manage various conditions correctly I can have life-threatening exacerbation of my conditions, and end up in intensive care. When I’ve pushed myself too far I’ve lost function that I’ve never then regained. It’s very very difficult to hold these things in balance.
However, with my list of priorities I know that they’re the things I need to do to be the person I want to be – and they make small sacrifices worth it. If I have to stop scrolling social media to rest, I remember that I’m resting in order to complete the tasks I see as high priority. If I misjudge and end up in hospital, I treat that as a lesson learned, and try to find different ways of managing my time. None of this has been easy to learn, but in order to be and do the most important things, I’ve learned to let go of other parts of my life.
How do other people manage to navigate energy and pain limitations, and overall progression to achieve personal life goals outside illness?