As a disabled and chronically ill person, there is nothing worse than ableism: the blatant mix of classism, discrimination, and a basic belief that non-disabled people are superior to disabled people. But disablism – a more conscious and direct act of blatant discrimination or abuse directly aimed at a disabled person based on prejudice around disability and ideas of inferiority (often being more overt and intentional) – is potentially worse.
It is even worse when it’s being committed by another disabled person, especially when this is being committed by so-called disabled activists, organisations, and charities that are supposed to be protecting and supporting the disabled people that they claim to represent. You may think this doesn’t happen – but it does, and the number of people affected by it appears to be on the rise.
Ableism or disablism?
As a long time campaigner and activist, I was completely disgusted when I recently experienced this behaviour myself from a disabled people’s campaign group. This experience left me feeling upset, used, and incredibly insulted. It was very clear that the group had absolutely no consideration of the chronic conditions I lived with and that their method of organising wasn’t accessible for everyone who wanted to support them in both direct actions and online.
Along with the fact that there is so much of an assault on disabled and chronically ill people right now, under this Tory – sorry Labour – government, the last thing we need is for us to be attacking each other. So, I began to ask myself if this experience has happened to me, am I the only one that has been treated like this? And if so, what is going on here?
Disablism at its worst
I wanted to know if this was just a one-off experience for me. So, I decided to reach out on X to see if anyone else had experienced this type of behaviour within disabled and chronic illness communities. I was completely shocked at the number of responses I received both openly and via private message.
There was clearly a huge issue here, and it wasn’t just me:
After recent experiences…
Has anyone had any negative experiences with disability and disabled rights campaign groups…? Or have you felt gaslighted, excluded, or discriminated against…?
Please share/comment for a wider reach. 🙏✊️
— Nicola Jeffery (@NicolaCJeffery) May 11, 2025
Along with many other disabled and chronically ill activists, campaigners, and organisers there was sadly a wave of responses. From disabled people’s campaign groups to established charities, the disablism was rife.
One of the people who responded to my post was journalist Melissa K. Parker. Melissa explained to me that:
When I started the online campaigning against assisted dying it was because, to me, there was a gap. There was no focus on online campaigning, and I couldn’t understand the lack of it because it felt like common sense.
When I reached out to certain organisations they would say “we have a plan, wait for that…” but it just never happened.
Let me be clear, I believed and still believe we are fighting for our lives. When I asked for help, a simple share, I was most often told ‘no’ by some of the most prominent organisations. I look back on that time – and I was going through it, a right state, wrecked – and just thinking that if I could get certain organisations behind it, I could do something. I think and believe this is backed by others experiences, and these organisations are disorganised, too concerned with upsetting those in power, hostile to new ideas, and slow to any kind of meaningful action.
It’s a shame because we need more hand-made protests like that. Why wouldn’t a disability rights organisation want that…? To me, it’s the kind of thing that Barbara Lisicki and others did. It’s become too polished and pristine, done just right. Who does that serve…?
Disability activist or careerist?
It was becoming quite clear that the same people who had mistreated me also had form. But it wasn’t just the campaign groups. This problem stretched deep into charities too:
The head of the MEAssociation wrote an article telling ME patients to get out of bed and do more. He resigned 4 months later but not after the entire organisation had defended him and no apology nor retraction has occurred.
— Paul Keeble ME/LC (@PaulRKeeble) May 11, 2025
Many chronically ill and disabled people were being let down, ignored, or removed because their needs don’t fit the narrative being offered. It was telling that there was an almost narcissistic need for some activists to be in total control of organisations. This even extended to people being removed from safe spaces and groups, with no apparent cause or reason. Controlling moderators were not sharing important articles and information to chronically ill and disabled people, due to their choice of disassociation.
This really has gone too far.
I asked disabled campaigner Chronically Vexed what they had experienced as a disabled activist trying to start a petition. They told me:
When I started my petition against the government over their proposed disability benefit cuts, I didn’t think the biggest gatekeepers would be from my own community.
I didn’t expect unconditional support, but I didn’t think I would be excluded from spaces by other activists. I thought we all had the common aim of getting these proposals stopped – but obviously for some organisations, optics and keeping the status quo are more important.
It’s exhausting fighting the government – and that should be using all my energy. But sadly it’s more exhausting dealing with this childish pettiness, bullying, and passive aggression from organisations and activists who should know better.
There’s space for everyone in this fight back against these cuts, let’s not exclude people.
And this is just one example of one person trying to share a petition (which you can sign here). How many more chronically ill and disabled people are being pushed out of disabled activism by other disabled activists?
Fighting back against disabled disablism
There was clearly a major problem with how many disabled and chronically ill people were being treated like this. I remembered trying to get other organisations to support the campaign group the Chronic Collaboration I set up.
Repeatedly, I told other activists about the fact that there are so many people at home who cannot make a protest in person but want to be included yet are being ignored.
I was repeatedly ignored myself.
So, when I saw that there had been a “Disability Rebellion” recently set up for this very reason, I got in touch to ask the organiser, Atlanta, what her experience of discrimination and exclusion by other disabled people was. Atlanta told me:
So in setting up Disability Rebellion, I have tried to reach out to other movements/charities and have found that some have been unwilling to engage with me. One group in particular doesn’t seem keen on working with newer activists and on the few occasions they’ve interacted with me, it was to be critical over trivialities.
They showed no interest in working with Disability Rebellion. I didn’t realise until recently that other people faced the same issues and some have told me that they have encountered outright hostility from them.
Disability Rebellion is working with movements because we can make a bigger impact working together and I believe that gatekeeping fosters the very division that the government can use against us.
We do not believe in gatekeeping and we believe that we are stronger together. We also believe in organising protests online because many organisations are not utilising the power of online activism, which leaves out the disabled activists who cannot leave their home or get to protest in person.
A lot of disabled people have told me that they don’t feel represented because they can’t go and protest in person. We want activism to be accessible to all.
Calling out the disablism
There is clear gaslighting, gatekeeping, bullying, and discrimination against younger and newer activists – who are clearly being targeted by older, set-in-their-ways activists who also believe they have full ownership of disability activism and full control of what we can and can’t campaign about.
Shockingly, this is literally going on right now.
As I was writing this article, new campaign group Crips Against Cuts put out this statement over one of the organiser’s use of accessibility aids:
View this post on Instagram
This, along with my own experiences, has been incredibly difficult for me to write about and go through – as it has for the others that have been affected by this behaviour.
Disability doesn’t discriminate – and yet we do
The last thing I want to do is to criticise the community I come from; the community I want to continue to support – especially at a time when we are already being targetted so much by our current government. But I cannot accept this behaviour from my community either.
This needs to be called out for what it is. Furthermore, we all need to look at our own behaviour. If this was an employee-employer situation, many of the cases I’ve mentioned here would constitute legal proceedings.
We know that disability doesn’t discriminate – so, neither should we. Otherwise we are letting the same rhetoric we are fighting divide and conquer us.
If this doesn’t change it will quite literally set back the fight and potentially change the progression of disability rights campaigning in this country.
As Canary columnist Rachel Charlton-Dailey has documented in her brilliant new book Ramping Up Rights, the history of fighting for the rights of chronically ill and disabled people has been hard enough as it is. Yet some people in our own communities seem determined to make it even harder.
Featured image via the Canary
