I have a bunch of disabilities that are nowhere near the scale that you describe, but often I feel so demoralised by how hard it is to exist as a disabled person that I want to die. But my resistance is galvanised by knowing that the people and the systems that would most benefit from my death are the ones who are making things harder for me, and people like me. Is it sustainable to continue living out of spite? Probably not, but it’s not just spite that keeps me going, but solidarity with other disabled people, and people who are marginalised by society in other ways too.
It sucks to be disabled. Even if society were radically different and far kinder than it currently is, it would still suck to be disabled. However, so much of my suffering is based in the world rather than my disability. Recently, for example, I had a meltdown because I was on holiday and the venue had described itself as being wheelchair accessible. It was not. When I complained that they shouldn’t list this as being the case if they’re not, this caused great offence. We found somewhere else to stay that night, and I later broke down at how fucked up it is that there’s more social stigma around being thought of as ableist than actually being ableist. Travelling with mobility problems is hard, but it would be way easier if there were less “compassion theatre”, where people want to appear accepting but are so deeply uncomfortable with thinking about disability and disabled people that they don’t meaningfully engage with accessibility issues.
My theory is that disability makes people feel uncomfortable because it reminds them of their own mortality. Being able-bodied is a temporary state, and that scares people. It means that a person like me merely existing at all is an act of rebellion and activism. I deeply wish that this weren’t so, because it’s so much work on top of the additional effort it takes to exist with a broken body, but besides dying, I can’t really opt out of that work — and if I did opt out in that manner, the work would still need to be done by the people who are just as tired and burnt out as I am. If being alive is an act of resistance, then I reckon that if I hold out as long as I can, I might be able to make the journey a little easier for those around me, or those who come after me. If I had to answer your question with respect to my current circumstances, I’d say that no, I don’t want to live. But I do anyway, out of defiance.
I reckon the same logic would resonate with me even if my needs were more significant. Hell, part of what led me to develop the views I currently hold is by being in community with disabled people whose lived experience is not far from what you describe. I have a lot more in common with them than it might seem at first glance, and that understanding gave me a lot of strength. It may well be a foolish hope, but if enough people push for change, then maybe we can build a world where fewer disabled people feel that death is preferable to life.
I think your point about people not wanting to be reminded of their mortality is sadly true. There are a lot of people that would prefer to be ignorant to the disabled, financially challenged, orphaned, etc. because they are difficult and extremely stressful situations to think about. Part of me understands why someone would want to keep their happiness by avoiding those people but at the same time I think people in better situations have a social obligation to help the less fortunate. It’s a rough world, real r/OrphanCrushingMachine stuff.
I have a bunch of disabilities that are nowhere near the scale that you describe, but often I feel so demoralised by how hard it is to exist as a disabled person that I want to die. But my resistance is galvanised by knowing that the people and the systems that would most benefit from my death are the ones who are making things harder for me, and people like me. Is it sustainable to continue living out of spite? Probably not, but it’s not just spite that keeps me going, but solidarity with other disabled people, and people who are marginalised by society in other ways too.
It sucks to be disabled. Even if society were radically different and far kinder than it currently is, it would still suck to be disabled. However, so much of my suffering is based in the world rather than my disability. Recently, for example, I had a meltdown because I was on holiday and the venue had described itself as being wheelchair accessible. It was not. When I complained that they shouldn’t list this as being the case if they’re not, this caused great offence. We found somewhere else to stay that night, and I later broke down at how fucked up it is that there’s more social stigma around being thought of as ableist than actually being ableist. Travelling with mobility problems is hard, but it would be way easier if there were less “compassion theatre”, where people want to appear accepting but are so deeply uncomfortable with thinking about disability and disabled people that they don’t meaningfully engage with accessibility issues.
My theory is that disability makes people feel uncomfortable because it reminds them of their own mortality. Being able-bodied is a temporary state, and that scares people. It means that a person like me merely existing at all is an act of rebellion and activism. I deeply wish that this weren’t so, because it’s so much work on top of the additional effort it takes to exist with a broken body, but besides dying, I can’t really opt out of that work — and if I did opt out in that manner, the work would still need to be done by the people who are just as tired and burnt out as I am. If being alive is an act of resistance, then I reckon that if I hold out as long as I can, I might be able to make the journey a little easier for those around me, or those who come after me. If I had to answer your question with respect to my current circumstances, I’d say that no, I don’t want to live. But I do anyway, out of defiance.
I reckon the same logic would resonate with me even if my needs were more significant. Hell, part of what led me to develop the views I currently hold is by being in community with disabled people whose lived experience is not far from what you describe. I have a lot more in common with them than it might seem at first glance, and that understanding gave me a lot of strength. It may well be a foolish hope, but if enough people push for change, then maybe we can build a world where fewer disabled people feel that death is preferable to life.
Here’s an image that captures my sentiment effectively, and has literally saved my life before: “I’m fucking fed up and tired and I want to die but living is the most punk shit I’ve ever fucking done”
I think your point about people not wanting to be reminded of their mortality is sadly true. There are a lot of people that would prefer to be ignorant to the disabled, financially challenged, orphaned, etc. because they are difficult and extremely stressful situations to think about. Part of me understands why someone would want to keep their happiness by avoiding those people but at the same time I think people in better situations have a social obligation to help the less fortunate. It’s a rough world, real r/OrphanCrushingMachine stuff.