Some days, all I find inside me is grief

Disabled grief and how I feel it.

Warning: This piece contains mention of ableist mistreatment & discrimination in public spaces, educational settings, employment settings, and medical settings. It also talks about eugenics and COVID related deaths. Please take a moment to check in with yourself before reading it and maybe come back to it another time if you need to. Thank you, as always, for your support.

Disclaimer: I was hesitant to publish this piece for a few reasons, one of them being that there is a dominant narrative that disabled lives are inherently sad, miserable, and tragic, and this narrative is often used as an excuse for eugenics - if our lives are so terrible, there is no reason to protect them. I don’t want this piece to contribute to that narrative or to be used to say that disabled lives aren't rich or beautiful or worth living. But disabled grief is part of that richness, and I need to talk about it. So, without further ado…

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Vanished Illusions (Grief) - Matthijs Maris, 1900 – 1917.

I’ve been in a lot of conversations about disabled grief over the years. Because being disabled means being suspended in a permanent kind of grief - always mourning the kind of life you were expecting to have, mourning a version of your body you used to know, mourning abilities you now lack. There’s grief at losing friends, hobbies, passions, and careers to disability and/or ableism. I’ve never really wanted to contribute much to these conversations - I find it difficult to dwell on grief. I’m not very good at letting myself feel negative emotions, or processing them. I prefer not to think on them at all, if I can. But, if you’ll excuse me, I’m going to give it a go now.

If grief is love run backwards, then I loved humanity so much. I loved people with a fervour and an energy incomparable to my love for anything else. My parents taught me to see all people as being inherently good, kind, and rational, somewhere deep down, and that we could forge connections and make social progress through empathy, education, and kindness. Maybe this is still true. I hope it is, but I find it increasingly difficult to believe.

When I first became disabled, I could never have imagined that the most harrowing parts of the disabled experience would be my treatment at the hands of others. And it is this that causes me the most grief, daily - I am mourning my own faith in humanity. I am mourning the optimist I used to be.

In the first 10 years I experienced symptoms of my chronic illness, I encountered significant medical neglect and gaslighting. I was told I was just anxious, that I was making it up, that I was “crazy,” that I was attention seeking, that I was “too much to handle.” When I eventually got my diagnosis, after fighting for over a decade, I naively thought that the most difficult part may be over and that my faith in people might be given time to be restored - surely doctors would help me now that I had a diagnosis, and others would treat me with kindness now that I had a name and a reason for my symptoms. This hope was swiftly extinguished, as I was entirely abandoned by the medical system at large, and started to experience more direct ableism as a result of my worsening physical symptoms and newly visible disabilities.

My next few years were littered with dashed hopes and squandered faith. I hoped that my university might make proper accommodations for me - they didn’t. I hoped that people wouldn’t comment on my mobility aids, laugh at me, and shout slurs at me in public - they did. I hoped that being disabled wouldn’t be a barrier to getting a job, considering my first class degree - it was. I hoped that I could continue the music career I had spent ten years building, that the musical community I had been a part of would make space for my access needs - I couldn’t and they didn’t. I hoped that, when I got a job, I wouldn’t be discriminated against in the workplace due to being disabled - I was.

It's important to say that each of these squandered hopes has a face (or many faces) attached to it in my memory. It can sound faceless and institutional when I lay it out and, of course, it is institutional in many ways. But I also remember the stern face of the lecturer who wouldn't record their lectures for me so I could access the education I was paying for. I remember the faces - young, old, and everything in between - of many of those who have spat slurs at me in public. I remember the blonde hair and slight sneer of the woman who didn't offer me a job because she was worried I would “just be another child to look after” when I interviewed for a job working in a play centre for disabled children. I remember the venue owners who refused to accommodate my access needs as a performer. I remember the eyes of the managers who have bullied and belittled me in the workplace, and the neat and tidy presence of the man who accused me of making up large elements of my health history during a tribunal over the ableist discrimination I had already been subject to at work. I say this to contextualise each of these moments as a new wave of grief - in each of these interactions, I went into them with faith in my fellow human beings, or at least hope that the person in front of me might treat me with respect. And in each interaction, that faith was snatched away. I grieved its loss each time.

And then COVID hit. Already struggling not to become entirely disillusioned with the rest of humanity, I was hugely susceptible to my hopes being raised by the community action we saw at the beginning of the pandemic - home working, an accommodation I had been begging for during my fruitless job searching, was suddenly rolled out on masse. People were staying at home to protect the most vulnerable in society, united in the goal of saving lives. People masked up and socially distanced in public. Non-disabled people suddenly had an insight into the loneliness and boredom that I, and many other disabled people, had long been experiencing as a result of not being able to access events in person, and they moved their community events online, where I could access them - the music scene I had become cut off from was suddenly there again, on a laptop in my living room. It seemed like a world that included me might be possible! That, through this awful, harrowing tragedy, there might be a better world on the other side of it, one that understood the impact of community action, one that thought about the needs of vulnerable people.

This renewed hope in others was essential to offset the fear I was feeling. I knew I was extremely vulnerable to COVID and I still cannot adequately describe the abject terror of the first few months of the pandemic, when we had almost no information about the virus other than that it would kill me if I caught it.

And, soon enough, my friends and community members started dying. At first, it was only a couple. And then more, in a flood.

The community of disabled people I had built online, to stave off the loneliness of not being able to access events in person long before the pandemic even began, started to fade away. Profiles that had been active every day suddenly went silent. My comment sections and inboxes emptied. I was invited to zoom funerals and mostly, to my shame, couldn’t bring myself to go. I wrote the name of each of my dead friends on a page in my notebook and in the notes app on my phone. The list still sits there, too long, weighing down my pocket.

As I was grappling with the onslaught of grief I felt for my friends and community members, a shift started to happen amongst the general public. People were tired of thinking about other people - they felt they’d done it for long enough, and it was time to get back to the old ways. And suddenly, the new set of hopes that I’d carefully cultivated to stave off my terror - that there might be some good to come out of this horrific experience - were dashed against the rocks with the old ones.

I’d hoped that the deaths of my friends and community members would mean something, that their memories would be used to light our way in protecting each other through community care. But, except for those of us close to them, they have been forgotten, and so have all the actions we could take to keep each other safe. I’d hoped, with all the evidence about how working from home was more productive, better for women, and better for disabled people, that it would remain an option for most jobs, so I wouldn’t have to fear for my livelihood my whole life. It didn’t. I’d hoped that those I knew to be kind, caring, community minded people would continue to take at least some minor COVID precautions to protect me, their communities, and themselves. They didn’t. I’d hoped that online events would continue so I could access culture and community in ways I had been cut off from before. By and large, they didn’t. I’d hoped that the insight people had gained into the experience of being housebound would mean they interacted with chronically ill and disabled folks with more empathy in future. They were too keen to forget the experience entirely, or to rose tint it retrospectively, to think about that. I’d hoped vaccines would remain available for the general population so as to protect us all. They didn’t. I’d hoped I could convince people with data, evidence, and patience, to change their behaviour for the good of themselves and everyone they know. I couldn’t. I’d hoped my friends would keep reading research and advocating for measures to keep me safe, so that I wouldn’t have to do it alone. Except for a rare few, they haven’t. I’d hoped post-viral chronic conditions and the people with them would be taken more seriously and accommodated for, in and out of healthcare settings. We haven’t. I'd hoped people would remember the impact we can have when we collectively take action to protect vulnerable people, and that they'd choose to do so more often. They couldn't be keener to never do it again.

I’d hoped more people wouldn’t die. They have, and still do every day.

I’d hoped I would not be seen as disposable, invaluable, or a burden by others because I’m disabled. I’d hoped never to hear people say “I don't care if you die - good riddance.” I am seen by many as entirely disposable, and I do hear people say this frequently.

I’d hoped I would not be routinely dehumanised, abused, discriminated against, and mistreated. But, every day, I am.

I am grieving for a version of myself who did not know what it was like to be treated this way. There used to be a version of myself, who I loved very dearly, who believed in the good of humanity and had faith in other people’s ability to apply empathy, rationality, and kindness. That version of me had faith that others would pitch in to help me live the best life I could, or at least not try to hinder me in that pursuit. But I’m afraid my hope in it all is dwindling - I find it harder every day to access it at all. Some days, all I find inside me is grief. And, much more than I grieve for the version of me who could walk around without pain or fatigue, I grieve for the person who had faith in others, and who had not been hurt and let down so badly, so many times.

I have even tried lowering my expectations so as not to feel this grief. I swapped lofty hopes of institutional change for smaller hopes - every day that I leave the house, I hope no-one will have parked on both dropped curbs that allow me to get to the high street. I hope that the shop owner will have built a ramp into the shop I need to go into. I hope the bus driver will let me onto the bus, and that fellow passengers have not filled the wheelchair space with suitcases. And, so often, even these tiny hopes are dashed. Even the smallest, most miniscule hopes I could covet, about the way I might be treated by others in the world we share, are proven to be false hopes more often than not.

There has been a lot of talk over the past few months about building community as a way to make it through dark times. I couldn’t agree more with the sentiment. But, to those suddenly talking about community for the first time because you need it now: have you ever stopped to think about how your actions, not just in the past, but in the here and now, contribute to my grief? How can I be in community with people who let me down, who dash my hopes for equal treatment, who make me wonder if my faith in others is fundamentally misplaced? Many of the people that have this impact on me are well meaning and think of themselves as kind, caring people, who think critically about social justice and the oppression of marginalised groups. But the experiences of disabled people and, in particular, COVID vulnerable disabled people, do not enter into their sphere of thinking at all. Until those people are ready to confront the ways in which they cause this very specific kind of grief in disabled people (and in other marginalised people) we cannot truly build communities together.

I really hope that, one day, I don’t need to grieve for the version of myself who had hope. Ironically, I still have hope that hope will return to me. But I will always grieve for the person who didn’t know what it is like to be treated so appallingly by even the most well meaning person. I will always grieve for the person who hadn’t experienced systemic oppression on this scale.

I will always live with that grief.

And it breaks my heart.

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Thank you for reading this piece. It is intensely personal and, therefore, I am unlikely to engage in the comment section as readily as I do otherwise. If you are thinking of leaving a comment along the lines of “look for the silver linings”, or “see your cup as half full”, I kindly ask that you don’t - as this piece delves into, I am an optimist at heart, but sometimes need the space to feel my sadness deeply. Thank you in advance for all the very kind comments from subscribers I know I will get - I am so grateful for your ongoing support, time, and engagement. You mean a lot to me.