It’s a horrific experience being disabled. My MIL (I have MECFS and for over 15 years) still asks if I’m better yet and denies my symptoms. Her sister also has MECFS (for around 12 years) and she ignores that too, but does now say she may have ‘that Long Covid thing the newspapers keep going on about’. The whole family my MIL, SIL, and BIL consider me a benefit scrounger and my BIL particularly likes to tell me what I am and am not allowed to spend my money on. Quite vehemently too. And then the government stirs it all up again. And it gets worse. Thank you for writing this, my brain doesn’t have the capacity at the moment.
I'm so sorry you're experiencing these terrible judgements, even within your own family - society is led to believe we need to be policed because we are ultimately regarded as trying to cheat/liars, we are not given credit for being able to give an accurate account for our own bodies - anyone who had to go through the process themselves would not imagine saying such things. The system judges us by its own standards - expecting us to be lying seems to be the starting point with the DWP and are messages repeated implicitly and explicitly by the media. Those terms are deeply dehumanising, false, and negate so much of who you are. I hope you are able to find ways of protecting yourself from internalising these ideas yourself.
Thank you, also don’t worry. I’m Gen x and apparently that’s why I don’t give a fudge what people think about me when they are so obviously wrong. My husband is the good one of the bunch and will go into battle for me (though I tell him not to bother, after 15 years they aren’t going to change - life is easier when we ignore them).
DWP are cruel. Going to tribunal cost me a year of my life and functionality I never got back - and it lasted a total of 2 mins as I’d challenged on a point of law; and the assessor lied throughout. At MR DWP actually told me they didn’t need to follow the law. The judges first weirds to me after hello, were “you were right. This was unlawful”, the DWP representative looked like he wanted the floor to swallow him up. But, my god the stress! I went from mild to moderate over that year, it cost them more in the end. I started on standard daily, I’m now moderate/severe and on full everything pip. I’m convinced if the system didn’t demonise us and make it so hard, I might actually have been able to work a simple part time job back then. Now there is absolutely no chance as it seems it set off a constant deterioration I can’t seem to stop only slow. Making it harder for me to get benefits isn’t going to get me into work. There is no job I can do from my sofa for an hour a day, with hour breaks between each 15mins of work. And even that would wipe me out. I despair for those without a support system. I have my husband at least.
I'm glad you have some support and that not 'giving a fudge' is a life-saver - the country will need more beds in care homes and hospitals if these plans go ahead as so many are in similar positions. Incentivising work is not the problem.
I don’t think I will be able to forgive the Labour Government for betraying disabled people in this way, and making them feel so worthless when in reality they have so much to offer.
I’m so pleased to have stumbled across you here on Substack, Louise. I don’t know how/why I didn’t know you were here!
I have been so distressed these past weeks by the government’s false narratives and short-sighted plans that I’m having to take a break from working. I ended up (yet again) in a very dark place and I’m now using all my energy keeping myself mentally well.
How do we make people care? It is heartbreaking to know that so few people do. But I think you (and Will Storr) are right that storytelling is our best tool.
It's so incredibly distressing isn't it, loss upon loss. I hope you're able to find some space, with time away from work, to resist the media/government narratives and focus on what's important to you and to be able to look after yourself as well as you can x
Thank you for this very important post, Louise. I worry for my UK friends, but I also feel a right shift in my part of the world and the ableism both in politics and society are scary. I have a chronic illness, and a close family member has ME/CFS. Navigating disability and illness is often an isolating full time job already. I am very grateful for writers like you who shine a spotlight onto these important subjects (and stories).
thanks so much for this Sam and I'm so sorry to read that things are similarly difficult in NZ - there's no accountability for the impact of these changes is there? I can't imagine the many people who are similarly struggling all the more at the threat of changes before anything is even confirmed. The precarity of this life is so hard to translate. All best wishes to you and hoping things settle and improve soon.
Louise, thank you so much for writing this. I have been in and out of denial about my own ulcerative colitis since I was diagnosed in 2017.
A couple of weeks ago my parents went to a demonstration against the disability benefit cuts. I live in the Netherlands so couldn't be there and am not directly affected by the cuts. They told me about the demo on the phone and all of a sudden I found myself choking back tears. It was their solidarity. For me, their chronically ill daughter. Solidarity is the most powerful thing in the world.
The writer and theorist Sylvia Wynter said that humans are a species of storytelling. Our storytelling capacity can be traced to the Blombos Cave in South Africa where the first cave drawing was found, dating back 73,000 years.
As a species we have been reduced to 'homo economicus' - a model of humanity which reduces humans to cold calculators of economic worth. But we don't have to be this. We can use our storytelling nature to tell new stories of who we are and what we want. This is what you and other disability justice writers are doing for all of us.
Laura this is such a beautiful response to the piece, thank you so much for sharing. Ideas (and experience) of disability are so complicated - so many negative stories impacting us, we desperately need more stories that reflect more accurately lived experience and in resisting such harmful shame and stigma - solidarity, absolutely x
Thank you for writing this. I struggle to find the right words to comment. It is so obvious that you are right, and I find it incredibly frustrating to see how little care there is, and I cannot imagine how much more devastating it must be for someone who is actually disabled rather than "just" moderately affected by chronic illness like I am.
I think a lot of the denial comes from the fact that people don't want to face that they themselves could get sick, too - they don't want to think about these topics. Our society has great skills in not engaging with our fears but turning away. Ironically, if society cared better for those who are sick, disabled or unlucky in some other way, it all wouldn't be that scary in the first place.
You're absolutely right Hannah, it is incredibly hard to confront and challenge denial.
thank you so much for reading & engaging, it really does mean the world to me that readers are - and I suspect there is rarely a 'just'-level of chronic illness, it all counts, it is all life altering and impacting x
Excellent article Louise. Thank you for writing so honestly, eloquently and passionately reasoning in the face of utter madness! It is reassuring and devastating to hear the experiences of others is awful as my own. I feel sure there is light ahead, shame we have to traverse the tunnel to get to it x
It’s a horrific experience being disabled. My MIL (I have MECFS and for over 15 years) still asks if I’m better yet and denies my symptoms. Her sister also has MECFS (for around 12 years) and she ignores that too, but does now say she may have ‘that Long Covid thing the newspapers keep going on about’. The whole family my MIL, SIL, and BIL consider me a benefit scrounger and my BIL particularly likes to tell me what I am and am not allowed to spend my money on. Quite vehemently too. And then the government stirs it all up again. And it gets worse. Thank you for writing this, my brain doesn’t have the capacity at the moment.
I'm so sorry you're experiencing these terrible judgements, even within your own family - society is led to believe we need to be policed because we are ultimately regarded as trying to cheat/liars, we are not given credit for being able to give an accurate account for our own bodies - anyone who had to go through the process themselves would not imagine saying such things. The system judges us by its own standards - expecting us to be lying seems to be the starting point with the DWP and are messages repeated implicitly and explicitly by the media. Those terms are deeply dehumanising, false, and negate so much of who you are. I hope you are able to find ways of protecting yourself from internalising these ideas yourself.
Thank you, also don’t worry. I’m Gen x and apparently that’s why I don’t give a fudge what people think about me when they are so obviously wrong. My husband is the good one of the bunch and will go into battle for me (though I tell him not to bother, after 15 years they aren’t going to change - life is easier when we ignore them).
DWP are cruel. Going to tribunal cost me a year of my life and functionality I never got back - and it lasted a total of 2 mins as I’d challenged on a point of law; and the assessor lied throughout. At MR DWP actually told me they didn’t need to follow the law. The judges first weirds to me after hello, were “you were right. This was unlawful”, the DWP representative looked like he wanted the floor to swallow him up. But, my god the stress! I went from mild to moderate over that year, it cost them more in the end. I started on standard daily, I’m now moderate/severe and on full everything pip. I’m convinced if the system didn’t demonise us and make it so hard, I might actually have been able to work a simple part time job back then. Now there is absolutely no chance as it seems it set off a constant deterioration I can’t seem to stop only slow. Making it harder for me to get benefits isn’t going to get me into work. There is no job I can do from my sofa for an hour a day, with hour breaks between each 15mins of work. And even that would wipe me out. I despair for those without a support system. I have my husband at least.
I'm glad you have some support and that not 'giving a fudge' is a life-saver - the country will need more beds in care homes and hospitals if these plans go ahead as so many are in similar positions. Incentivising work is not the problem.
I don’t think I will be able to forgive the Labour Government for betraying disabled people in this way, and making them feel so worthless when in reality they have so much to offer.
I’m so pleased to have stumbled across you here on Substack, Louise. I don’t know how/why I didn’t know you were here!
I have been so distressed these past weeks by the government’s false narratives and short-sighted plans that I’m having to take a break from working. I ended up (yet again) in a very dark place and I’m now using all my energy keeping myself mentally well.
How do we make people care? It is heartbreaking to know that so few people do. But I think you (and Will Storr) are right that storytelling is our best tool.
It's so incredibly distressing isn't it, loss upon loss. I hope you're able to find some space, with time away from work, to resist the media/government narratives and focus on what's important to you and to be able to look after yourself as well as you can x
Thank you for this very important post, Louise. I worry for my UK friends, but I also feel a right shift in my part of the world and the ableism both in politics and society are scary. I have a chronic illness, and a close family member has ME/CFS. Navigating disability and illness is often an isolating full time job already. I am very grateful for writers like you who shine a spotlight onto these important subjects (and stories).
Thanks for writing this, and for making it additionally accessible by providing your audio voiceover.
I’m not directly affected by the UK disability cuts. When I was still in the UK, I had not yet been diagnosed neurodivergent.
But we had “rule changes” to our previously individualised funding usage over a year ago here in Aotearoa NZ.
It sent me into a huge regression that I’ve not recovered from. And watching it unfold globally is terrifying.
It’s not as surprising here given that a conservative government was voted in, but I had so much hope in a new UK Labour government.
I was visiting the UK last year when the election took place, visiting my family because my Dad was dying.
One of the last things he said was “Did Labour get in?” and we were so relieved to be able to tell him they did.
This news is absolutely gutting.
thanks so much for this Sam and I'm so sorry to read that things are similarly difficult in NZ - there's no accountability for the impact of these changes is there? I can't imagine the many people who are similarly struggling all the more at the threat of changes before anything is even confirmed. The precarity of this life is so hard to translate. All best wishes to you and hoping things settle and improve soon.
Thanks, I appreciate you raising awareness and advocating for us all.
Louise, thank you so much for writing this. I have been in and out of denial about my own ulcerative colitis since I was diagnosed in 2017.
A couple of weeks ago my parents went to a demonstration against the disability benefit cuts. I live in the Netherlands so couldn't be there and am not directly affected by the cuts. They told me about the demo on the phone and all of a sudden I found myself choking back tears. It was their solidarity. For me, their chronically ill daughter. Solidarity is the most powerful thing in the world.
The writer and theorist Sylvia Wynter said that humans are a species of storytelling. Our storytelling capacity can be traced to the Blombos Cave in South Africa where the first cave drawing was found, dating back 73,000 years.
As a species we have been reduced to 'homo economicus' - a model of humanity which reduces humans to cold calculators of economic worth. But we don't have to be this. We can use our storytelling nature to tell new stories of who we are and what we want. This is what you and other disability justice writers are doing for all of us.
Laura this is such a beautiful response to the piece, thank you so much for sharing. Ideas (and experience) of disability are so complicated - so many negative stories impacting us, we desperately need more stories that reflect more accurately lived experience and in resisting such harmful shame and stigma - solidarity, absolutely x
Thank you for writing this. I struggle to find the right words to comment. It is so obvious that you are right, and I find it incredibly frustrating to see how little care there is, and I cannot imagine how much more devastating it must be for someone who is actually disabled rather than "just" moderately affected by chronic illness like I am.
I think a lot of the denial comes from the fact that people don't want to face that they themselves could get sick, too - they don't want to think about these topics. Our society has great skills in not engaging with our fears but turning away. Ironically, if society cared better for those who are sick, disabled or unlucky in some other way, it all wouldn't be that scary in the first place.
You're absolutely right Hannah, it is incredibly hard to confront and challenge denial.
thank you so much for reading & engaging, it really does mean the world to me that readers are - and I suspect there is rarely a 'just'-level of chronic illness, it all counts, it is all life altering and impacting x
Excellent article Louise. Thank you for writing so honestly, eloquently and passionately reasoning in the face of utter madness! It is reassuring and devastating to hear the experiences of others is awful as my own. I feel sure there is light ahead, shame we have to traverse the tunnel to get to it x