Ableism on mumsnet

[Kitten1982]

This was my reply on another post but I wanted to share it in its own thread because I’m so shocked and saddened by the comments I see about disability and disability benefits on here. I’ve been so distressed by some of them, I ended up in tears yesterday. The way some mumsnetters talk about disabled people is not only disgusting, it’s downright dangerous and you’re allowing governments to pave the way to leave more of us dead, just like many of us died due to Tory austerity.

i know there’s a lot of older people on here who might have more conservative views and I know there’s a lot of middle class people on here who don’t know what it’s like to rely on such a pittance, and don’t spare a second to think about how little money it is- nor ask themselves why we’d choose to live on too little money, constantly with the precarity of the whims of assessors (who have targets) and governments, rather than work. I have a first class degree and plenty of relative experience to get a job. I was meant to be moving onto my PhD when I developed even more conditions.

This is a plea from the bottom of my heart and the many vulnerable people I campaign with feel unanimously the same. You’re making suffering people suffer more. Think about that.

Anyway, here’s the reply I sent, please read it and inform yourselves before commenting on fake disabled people defrauding the state, or real disabled people not bothering to work…

TBC, that group of people is so small that it’s offensive when people raise it. The UK fraud rate for disability benefits is 0.2%. It’s not worth mentioning and it muddies the water and it allows people to diagnose people as frauds by eye. Like those people who see someone stand up from their wheelchair and assume they’re a fraud because they think all wheelchair users are paralysed. Or people whose disabilities aren’t visible having to deal with friends and family saying stuff like you did x, so you must be able to do y/ you did x yesterday so you can do it today. People who make those examples against chronically ill people aren’t medically qualified and if they were, they’re not the ones who performed their medical history, examination and tests.

if it was another subject, a lot of people would be more careful about allowing sweeping statements to be made about an entire population, based on the actions of less than than half of a half of a percentage point. It’s horribly unfair and it means that disabled people like me and my disabled DC are looked at with suspicion by the general public.

i wrote something a few years back- it was published for scope and was a guest post for Mumsnet. It was called, ‘I’m tired of having to perform my disability.’ And so many people agreed with the article because they experienced the same feelings as me about being paranoid about societal judgements. So a lot of us ending up vocalising our pain when we’d otherwise be silent in it (which makes it easier to cope with) or having to transfer out of my wheelchair in a way society expects and accepts, rather than the way which is comfortable for me. It’s not fair that 0.2% of people who’ve decided to pretend our disabilities are having such an awful impact on the 99.8% who are genuine, not to mention all the genuine people who are wrongly turned down and have to appeal and put in for tribunals, and go through a hell of a lot of work to generate the necessary evidence.

if I only had one of my conditions (uncontrolled epilepsy with cluster seizures- which require emergency meds, but can also make me blind, paralysed, psychotic, incontinent, and wander off in my wheelchair), I would still need to claim disability benefits. But without my other conditions, I would seem just like anyone else between seizures, even though I have to have someone with me who’s trained to use my life saving medication at all times, it wouldn’t impact my other functions outside of the above. And when I am experiencing the above problems, my kids try to keep me inside the house (when I’m trying to run away in fear because the seizures have that impact on me afterwards) and I often just doze in bed, sometimes for a couple of days. I am often left with horrible vomiting and migraines. How would someone know what I look like when I’m very unwell when I’m either in bed or in hospital when it happens? Friends visit me in hospital, but only when I’m on the mend. They’ve seen seizures but only a couple have seen the clusters, and only one has seen my debilitating projectile vomiting condition (cvs- look it up. It goes beyond vomiting and is debilitating) because I don’t want to see people when I feel so unwell. The only reason the one friend who’s seen it has seen it is because she came to see me in hospital sans warning so I was still too ill to want visitors when she came in. So please, everyone, stop judging people as fakers and fit and we’ll because you really don’t have a clue.

i know I'm going to die young because of my health conditions (I’m 42 now and in 6 years alone I’ve been in trauma/ resus 10 times and have to be hospitalised several times a year. I lost a friend af the age of 34 to 2 of the same conditions as me, and another at 45), and I am so scared about whether my sons will be able to figure out the forms after I’m gone. Basically, I’m trying to create a guide for my eldest for how to fill in the forms for each of his brothers (he also has bipolar himself but doesn’t claim anything for it).

Can those (by no means do I only refer to the person I’m quoting but others on this thread) please actually do some research, but about fraudulence with disability benefits, but also relapsing and remitting conditions? In adding suspicions and repeating cliches which don’t apply to many, many disabilities, you’re allowing govts to effectively commit eugenics by starving us to death. Please stop, I beg you all.

As a final note: people rarely get disability benefits for low level mental illness, as otherwise claimed by the govt. My 22yo suffers from bipolar, CPTSD, and very severe social anxiety, as well as inheriting cvs, but he won’t claim, tries his hardest to get in to college for his course, and since he lost his last job for having to be taken into A&E due to throwing up blood whilst still on probation in the job, he’s worked his arse off to find other work (side note: if anyone has something in southern central Hampshire, please message. He’s training as a mechanic but he’s worked in restaurants, helped me to run my former business on the admin side, and he’s carer to 3 people, so he’s very responsible.). I have been disabled for 42 years and only gave up my business a year ago, despite having 12 conditions during the total time I ran this particular business, and other people to whom I have to be a carer- albeit through advice, admin and verbal help.

Just please stop assuming relapsing and remitting conditions are fake or not as bad as the sufferer says; stop saying mental illness can be overcome- some people can, others can’t, it’s not a personal failing; stop assuming your eyes can tell you someone’s whole health experience; and stop assuming disability benefits are too generous (actually some of the lowest in Europe vs cost of living), or that it’s easy to get disability benefits for “scroungers” because they’re hard enough for genuinely disabled people to claim.

Disabled people need the vocal public support of others right now because if they ever do manage to get the green paper through, we could lose PIP to an insufficient catalogue,, and the WCA will turn away more people like me (people with multiple complex conditions). Disabled people are in for having to survive a political storm when all we’ve done to deserve wicked treatment is being disabled. Life’s hard enough as a disabled person when society doesn’t try to tear you down and the govt isn’t trying to force you into starvation. Please be kinder.

I'm so sorry you feel so upset.💐The rhetoric against the disabled is shocking and the government's plans are deeply unsettling.

@username299 Thank you. Once upon a time, when I was a writer and largely wrote about disability issues, I had a lot of support from MN itself and the MN community. I haven’t been on here in a long time because I’m bi and have an intersex adult son (and I do mean intersex, not DSD, because I respect how my son describes himself) and I had some upsetting experiences from community members so I left. I decided to give it another go but it seems disabled people aren’t supported here.

There was an AIBU about being worried about disability benefits, and a shocking 45% of people said they were being unreasonable. Some of the comments were about disabled people not bothering to work, others were about people pretending they’re disabled. So whilst I think some of the 45% probably included people who haven’t heard the Lab rhetoric & plans re disability welfare, following on from some very scary years under the Tories, I’m pretty sure that a large number of them think real disabled people are rare as rocking horse poop, rather than constituting up to 25% of the population.

I apologise for any incoherence in the above. I have had a brain injury for 6 years now & I often miss out words entirely, use totally inappropriate words instead such as using the word ‘but’ when I actually mean ‘also’ (which I think I might’ve done above), or use homophones or half-rhymes without realising it. I’m actually highly educated and don’t have issues in a lot of areas to do with experiences which pre-dated my brain injury. But I find new skills and information difficult to process and when I can process it, I often won't remember anything about it, or, after a couple of days, having even learnt anything about the subject despite deep diving it.

Hear hear

i know there’s a lot of older people on here who might have more conservative views

Complaining about ableism while doing an ageism? Lovely.

FWIW: most unthinking ableism comes from people with no experience of disabilities. And/or little imaginative empathy.

Some comes as a push-back to their impression that some posters want the world to change to focus on, say, ND children with nothing kedt for their NT children.

Etc etc.

@Kitten1982 You write beautifully, please do not apologise 💐

I couldn’t agree with you more, the sentiment, anger and hatred towards disabled people I see here and online is horrific. Nobody knows 100% of someone’s life so how can we judge or be judged.

Your son sounds amazing, I hope he finds a job he loves soon.

You are so right.

There is at-least two threads up and running right now. The ignorance and hate some of these women are spewing is disturbing, they should all be ashamed of themselves.

They have no clue how hard it is and the hoops people have to continually jump through to receive and keep those benefits, or the mental toll it takes on a person.

They need to seriously ask themselves, would they want to swap places with the disabled or people on benefits for whatever reason. Life has a way of humbling people eventually though.

When will people get angry at the real villains in this country.

What exactly do you mean by your last paragraph???

I live with an acquired disability and also work (part-time and self-employed as I'm unable to do employed work any more).

Our society is very ableist, and racist, and our media just encourages this. Mumsnet just reflects the wider society. Expecting things to be different is odd: why should women who are mothers be less ableist that the rest of society?

And there IS also a debate to be had about disability benefits. We are one of the worst countries in terms of productivity at work and disability claims. It's extraordinary and not sustainable. Lots of things need to change to approach this - including the world of work. And in the course of that debate, lots of offensive things will be said.

People will need to keep educating people, unfortunately, and not everything can be policed, or banned.

I mean that everyone wants what is best for their children. When people post about what they need (eg at school) for their ND child, people with NT often see that as wanting to hog resources, and push back because they see it as unfair.
And that is often when ableist stuff comes out, often not in the way they mean.

I am not denying there is ableism here, just that some is unwitting or unthinking in the heat of the moment. Some is entirely intended and vile.

But could have done without the ageism in the OP.

Surely no one would disagree that unpleasant comments about disability are unfair and upsetting.

I take issue with the ageism on here too, as mentioned by a pp.

All of these things are wrong and should be challenged.

Agree with pp, you are quick with the ageism, are you ageist?
No the reality is you are just writing a post, people don't agonise over what they write, they just type quickly.

Honestly if you cry because of posts on here then stop reading, it isn't good for you. The replies are not attacking you personally.

When I used to write, going back over a decade, it was either about feminism or disability. Mumsnet used to give me BOTD, BOTW and “guest posts” quite regularly. The reception I used to receive on MN was always incredibly supportive and people on here tended to be more SJW than parroting Tory talking points. I’ve been away for a long time, to the point where I’ve had to create a new account as I can’t even access the email my old one was associated any more, and I’d stopped writing and using MN because the tide was beginning to turn against vulnerable people. I wanted to see where the general vibe was now and it’s worse.

it is problematic that you’re suggesting my post is misplaced because society also sucks for disabled people. We need to have safe spaces because of that. This used to be one. I’m not going to not ask people not to be ableist because ableism is happening in other places too. I ask people not to be ableist wherever I am, and I’ve just started writing articles about disability again- though for disability magazines rather than the mainstream places I used to write for, because people clearly care a lot less than they used to

You've used quite a lot of acronyms and I'm not sure what all of them are!

I don't disagree with you, and I think that there is value in continuing to point out unhelpful views or thinking, but I won't do it at the expense of my own peace of mind/mental health.

MN used to be far smaller, and far more moderate. Moderate speech is very difficult on MN these days, across all the boards (especially the feminism board). The fact is, this isn't the safe space it was, because society isn't the safe space it was. People feel free/able to express whatever they want, no matter how offensive it is perceived by other people. And moderate voices are shouted down.

FFS. You want support for your 'ism' but by doing so, display another one?

i know there’s a lot of older people on here who might have more conservative views

... is both a massive assumption, as well as an ageist statement.

I’d also add that we don’t have a massive problem with disability claims and we have one of the least generous systems in Europe. What we have is a productivity problem due to deindustrialisation due to successive govts wanting to focus us as a finance based economy. You’re clearly internalising ableism if you don’t know these things and are happy to point the finger at fellow disabled people rather than the actual policies which reduced productivity in this country.

Disability benefits allow people (note it’s only a 0.2% fraud rate so it’s almost exclusively genuinely unwell people) to live in penury- even then, I’ve had to face losing friends in disability activist circles due to starving to death. Our benefits system also fosters a disabled person’s dependency on non-disabled partners. One in three disabled people will experience DV & govt rules have made it that they can’t even save a tiny escape fund, and hostels are rarely wheelchair accessible. Disabled people also now can’t try and save and fundraise for adaptions to their homes or cars whilst on UC because they lose their benefits after going over a relatively low bar compared to the cost of disability adaptions.

I’m happy for you that you still get to WFH. I had to stop a year ago after running a business and taking in freelance work. You don’t know when that will happen to you, too. And if you’re also supported financially by a partner or inheritance etc, then that’s a matter of luck, which shouldn’t be what decides how the majority of us have to try to survive on. I stayed with my abuser for 20 years due to my fear of the ever changing benefits system before it got so bad, I couldn’t justify keeping us in it. I’m a damn sight poorer without him, albeit safer & saner, and trying to support my 3 disabled OS on my own. We barely afford to survive.

Now they’re going to make the WCA even harder, and it will especially impact people like me with multiple complex conditions (despite mine being life threatening) because of the proposed changes to boundaries according to a points system which doesn’t take account of the cumulative nature of multiple conditions. Meanwhile, Labour might try to push ahead with changes to PIP, which could effectively get rid of it entirely and replace it with a catalogue and therefore not account for the majority of the costs many, many disabled people have to face on a daily basis.

When disabled people have an “I’m alright, Jack” attitude to other disabled people I find it baffling. There’s so many different disabilities and levels of capacity and fatigue etc we can’t judge people based on our own experiences. If your own experience hasn’t been hard fought fundraising for the right equipment, being unable to work at all because you are too unwell and can’t even sit most of the time as it makes you vomit even more, living out of food bank boxes- which aren’t actually very helpful because we have so many dietary problems and my sons’ disabilities mean they also can’t cook, especially recipes from raw ingredients, going weeks without any income for you and your family because the system made a mistake, and an abuser you’ve had to fight to free yourself & your family from, then you’re not going to understand why it’s so wrong. But if you’ve been through the above and still think there’s an issue with disability benefits that needs fixing, then you’d have to be downright masochistic- especially if trying to support other disabled people too.

Anyone reading this, please note: disabled people are much more likely to experience DV than non-disabled people, and disabled people are more likely to have disabled children - which I don’t think requires explanation. We also have greater costs than non-disabled people to a pretty significant degree. Yet we’re expected to survive on a third of what we’re told is the basic income threshold people need for a basic good quality of life. Disability benefits don’t need changing, society does.

The only disabled people I know who can work but don’t? Really want to but because they’re wheelchair users and experience things like seizures, no one wants to employ them. Again, that’s not a disability issue, it’s a societal one. Shame on anyone who’s blaming other disabled people and benefits for that, rather than corporate structures which largely lock out disabled people from entry level upwards.

There is a lot of intolerance for lots of groups of people on MN unfortunately OP. People will voice opinions, that they would perhaps be more measured in how they speak in real life to others. I can only say that if you are finding it so upsetting, then just step away, that is all that you can really do.

I’m middle aged. My son is 22 the day after tomorrow. My younger in laws are both grandparents. I’’m not being ageist by stating the actual real and long running statistic that people in my age group and older tend to be more conservative. It’s an actual fact. You can’t defend one form of bigotry by trying to create a pretend one about something else. Instead of defending the bigotry at all, why not actually engage about what I said, why it’s so prevalent here and how that impacts people? You took the cowards’ way instead. For shame.

What do you mean by ‘conservative’? Do you mean ableist? Opposed to disability benefits? Tory voters? ‘Non-progressive’?

Thank you. You’re totally right. Society has become a far more terrifying place to be a part of minority groups. People say a lot of stuff about disabled people behind the anonymity of a screen that they definitely wouldn’t say if they had to look me in the eye, and have to see my pain, seizures, vomiting etc and the financial hell it is to try and survive. I genuinely fear for where the world is going.

I mean lower c conservative, as I spelled it, which generally involves wanting a smaller state and that includes having to pay fewer benefits etc. Why don’t you have a google about the subject?

Re. your previous post (that I won't quote, as it's long) - we do have a huge problem with disability claims.

The number of people claiming working-age disability benefits have doubled in the last four years. Under 40s claims have increased by 150% in that time (and mental health claims have increased from 28% to 37%).

I know many people who claim PIP but don't need it (I applied myself - not because I need it but because it's the only way the government is currently tracking the national level of my condition! And using lack of PIP claims to indicate that it basically isn't a problem). I also know several young adults who are claiming high levels of benefits (in fairly well off households) and getting no support into work - which just seems ridiculous to me.

Undoubtedly one of the reasons for that is the parlous state of the NHS and people's health declining because of that. But either way, it's not unreasonable to state that this is something that needs discussing and addressing, as it isn't sustainable with that level of increase. We need that conversation as a society (as we do for refugees and immigration) but a moderate conversation seems very difficult to find.

I don't think it's fair to say that I have a 'I'm alright jack' attitude to other disabled people. But I do get cross with the assumption that disabled people can't work, because I think with the right support many can (I'd love to see companies fined for having a level of disabled staff that is less than that of the general population!!), and I don't think that benefits should be given to households that don't financially need them: they shouldn't be some sort of state compensation for being disabled. It isn't just corporate structures that need addressing: it's the whole thing.

I’m not engaging on this post any longer. I’m not wasting my very limited energy, after a night of seizures and vomiting, on people trying to cultivate a counter-attack by misrepresenting my words to create a straw man. If you don’t have anything to say about the treatment of disabled people, even if you agree we should be treated poorly, but you feel the need to reply to my post with a non-sequitur attack (which are generally nonsensical) accusing me of being ageist because I referred to genuine statistics about people in my own age group and our political inclinations, or look for other ways to twist my words so you don’t need to deal with the substance of my words but still get to attack me, then I can only assume you are some of the ones who hold such contemptible views and say such terrible things about disabled people on here, but lack the courage to say it directly to one. Utterly toxic.

Thank you to those who recognise the toxicity and cruelty of the way people speak about disability here. It’s apparently now acceptable as a general social rule to use the r-word again, so I shouldn’t have been surprised that this place is even worse than when I decided to leave it in the first place.

Who is assuming they can’t work? Many of us can’t. I can’t. I spend my life vomiting, having seizures, and being in agony. My LD, auDHD son with processing skills disorder and dyspraxia can’t, but could if places like Remploy still existed. My eldest son is disabled and lost his job for being rushed to the hospital whilst throwing up blood (he has CVS like me- one to google as it’s rare), but is looking for a new one. I myself have worked from home even after I developed a brain injury and uncontrolled epilepsy, taking my diagnoses up to 12. But as of a year ago, my health became too bad.

I don’t know where these assumptions are about disabled people not being able to work. Most of the assumptions I see are that everyone can work if only the right fit is found, which simply isn’t true of a great, great many of us.

And corporate structures do need changing to help those disabled people who can work into work. They want to work. There should be more genuine WFH. The govt shouldn’t make it that, unless you’re on the highest rate after you’re WCA, you can’t get an education without losing your universal credit because when people become disabled, they often simply need retraining to stay in the workforce. But those aren’t the conversations taking place on here. The conversations taking place on here are gossiping about some unknown friend of x person who they reckon isn’t as sick as they say they are AND THEY GOT THEIR HAIR DONE … dah, dah, daahhhh… so can’t be sick and must be grifting.

There’s conversations to be had about helping a lot of disabled people into work, but they’re not the conversations taking place here. They’re not about systemic barriers faced by disabled people. Instead, they’re horrible and defamatory about millions of disabled people in this country. And as a disabled mother of disabled OS, I find that utterly abhorrent and terrifying. The world is slipping backwards for all minority groups, and for women. As women, our liberties and rights are at stake, the future we want for our children is at stake. Now’s the time for all women, disabled people, LGBTQ people, and racial/ ethnic minorities to have each other’s backs because social media is waging war on us all.