Unlearning ableism – with Charlotte Puiseux

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A conversation with a researcher and activist about disability inclusion

Charlotte Puiseux PhD, is a psychologist, philosopher and activist with the French collective Les Dévalideuses. When I came across her work on feminism and anti-ableism, I had to speak with her.

I discussed civil rights struggles with Charlotte, crip culture and intersectionality — especially the links between racism and disability, as well as capitalism and ableism.

I enjoyed speaking to someone who isn’t a web specialist for once. Charlotte shared valuable insights into her experience using digital tools as a disabled person. While most of the people I interview are disabled, their view of digital accessibility is often shaped — even skewed — by their technical expertise.

Charlotte opened up about her discomfort with digital tools, to the point of questioning her place in digital public spaces. Beyond technical barriers, she spoke about her need to feel safe in what can be a hostile environment — including activist spaces.

We also talked about the need for a shift in mindset. What if we started designing from the needs of those most excluded, instead of creating for non-disabled people first and then trying to adapt?

The questions raised during our conversation are a call to reflect on our responsibility — both individual and collective — in making the digital world inclusive for Disabled people. And beyond digital accessibility: what are the real barriers we need to break down to build a truly inclusive digital world?

Digital accessibility, illiteracy and violence

How does your disability affect your use of digital tools?

With my illness, I’ve gradually lost the use of my arms. At first, I could type on a keyboard, but I can’t do that anymore. So I had to get used to using on-screen keyboards with a mouse. But I didn’t find it practical. Then I thought I should try text-to-speech, but I’ve never found a system that works really well.

It’s a bit of a vicious circle because none of it helps me feel confident enough to invest in proper equipment—I don’t feel like I’m performing well enough...

What tools have you tried, and how did it go?

We tried Dragon, but it wasn’t very convincing. So now I use the built-in voice tool on my computer. But it’s not amazing. The silly thing is, as soon as I stop speaking, it adds a full stop. And when I start speaking again, it adds a capital letter. It's like I have no time to think about what I'm saying... We managed to turn off the full stop, but the capital letters still happen. So I always have to go back and correct everything. It’s a bit annoying, I must admit. And sometimes it's just nonsense.

How do you feel about social media?

I struggle to feel comfortable on social media. I know it’s essential to be there if you want your voice heard. And it does help you connect with people you’d never meet otherwise. But there’s also something really intrusive and violent about it.

It’s a world I’ve had a hard time getting used to. It feels intrusive, like people are coming into my home if I post something. It scares me because I don’t know who’s going to see what I share. I don’t know if they’ll be kind or not.

I know you can set privacy settings to control who sees your posts. But I don’t really know how to do that… not at all, really. If I had a better grasp of those tools, maybe it would make me feel a bit safer. But I think it’s not just about that.

I use social media for work and activism. I’m not there to talk about my holidays or my personal life. So 95% of my contacts are complete strangers. They're not family members—I don’t really know who I’m dealing with.

Now, I’ve talked about the negative aspects, the things that hurt me. But the vast majority of people who contact me are kind and say nice things. That’s important to remember too, you know? But that remaining 10%—wow... Those are the aggressive people, the ones who disagree with me in quite a violent way.

Does that violence only come from strangers, or can it come from activists too?

Sometimes it doesn’t come from the people you’d expect. In anti-ableist circles, there are people we should be working with, people who share our values. But there’s a lot of tension and violence we’ve all internalised. I think we’ve been so badly treated in our lives that we sometimes reproduce those patterns towards other people, often without realising.

Those observations have really made me think and question myself. I’ve even wondered whether it’s worth going on at all.

Where does this idea of activist purity come from?

The quest for purity between activists is the idea that you’re not allowed to make mistakes. That when you’re fighting for a cause, you always have to be perfect. But that’s just not possible. No one can be perfect. We’re all still learning.

That creates a lot of tension, including on social media and in the media in general. People get access to what we say, and they expect everything to be perfect, all the time.

This purity also fuels a lot of violence within our own communities. Just like anyone else, I can make mistakes. I don’t know everything, especially about topics that don’t directly affect me. Still, it often brings a wave of harsh criticism. And then I think, maybe I’d be better off staying at home, peacefully tending my garden, you know?

Racism and disability: why crip culture must be intersectional

What is crip culture?

In the 1960s and 70s, there was a first wave of disability activism in the US, especially around civil rights. But it was mostly led by white men. In the 2000s, Disabled people who weren’t necessarily white or heterosexual felt the need to express their own experiences. That’s where the Queer movement really helped shape things.

Crip culture is a mix of anti-ableism—challenging the medical model and oppressive systems—blended with Queer movement ideas.

There’s a lot of thinking around reclaiming stigma, breaking down binaries and performativity. These are all strong ideas from the Queer movement, reinterpreted for Disabled people. The anti-ableist movement is still mostly white. But being a disabled person of colour is a different experience from being a white disabled person.

How does racism interact with disability?

It has many impacts—even in how disability can be created. Racism can cause disability. For example, someone might not initially be disabled, but through repeated exposure to racism, they might end up with health issues. Maybe they’re working in unsafe, precarious conditions that lead to illness. And then, they’re less likely to be taken seriously by doctors.

Racism also affects how Disabled people are treated. Racialised people may experience different treatment from the police, for instance. This affects men more than women.

Let me give you an example. A racialised autistic man might be seen as dangerous by police. That mistaken perception leads to more violent responses. An autistic person might behave in ways that others see as “unusual,” but not dangerous. Yet the police might misread that and act aggressively.

To understand someone who lives through all these layers of oppression, you can’t separate them. Discrimination is all interconnected. If you want to learn more about the links between racism and ableism, have a look at the work of Mulakoze and Elijah Djaé.

Systemic ableism: the invisible oppression behind capitalism

How do you define ableism?

Ableism is the system of oppression Disabled people face. It’s the idea that our lives are worth less than those of “able-bodied” people.

From that idea, you can understand so many behaviours in society. Who gets access to what, who gets care. If there’s a choice between doing something for non-disabled or Disabled people, we’ll prioritise the non-disabled ones. And maybe deal with the rest later—if at all.

You talk about worth. Is there a link between capitalism and ableism?

Capitalism values the most productive bodies. The faster you work, the more you produce, the more valuable you are. A person has to bring in money and generate profit. And these ideas get internalised—even by Disabled people. We start to devalue ourselves. We think we’re less capable, less productive, less worthy. We believe employers won’t hire us because of that.

I really don’t think capitalism helps us be happy. These are harmful values for people. But right now, we’re all deeply convinced that our worth is tied to our productivity. I think that’s a mistake.

Still, it’s hard to imagine stepping completely outside society and creating some kind of alternative world or micro-society. I’m not sure that’s the answer. I think it’s better to try and infiltrate existing systems and push for change from within. We need to look at the bigger picture and ask how we can transform things.

Of course, it won’t happen overnight! We’ll need to compromise.

Even though I care about the environment, I still use a car and plastic. Society isn’t set up to work differently. Take my medical equipment for example—it’s all plastic. That creates extra waste.

When I was in hospital every day, I saw piles of unopened plastic items thrown away. If it wasn’t the right thing, it got tossed. So much waste! But what can you do? You can’t risk people’s lives.

Still, I don’t think we’re reflecting enough on these issues. We need to find less polluting alternatives. But this can’t just be left up to individuals—especially those who are already oppressed.

For instance, people criticise racialised communities for not engaging with environmental issues. But those same people are often the most economically vulnerable. Eating organic is expensive!

Who’s responsible for ableism – the people or the system?

When we look at the systemic side of ableism, it can feel a bit like we’re letting ourselves off the hook. Because we’ve all internalised racist, sexist, ableist values, we’re not necessarily responsible for everything we do. We just grow up like this, with those ideas.

But that doesn’t mean we shouldn’t reflect on or try to unlearn them. On the one hand, yes – we absorb ableism. And there’s no point in constant guilt or self-punishment, that’s true. But we can also try to build a society that’s less ableist for future generations.

Disabled parenting and activism

How long do you think it'll take to see systemic change?

We can already see it in the everyday work we do to unlearn things. I think activism helps us get to that point of questioning ourselves. Talking with people directly affected also helps you realise the mistakes you’ve made. Everyone makes mistakes, and everyone has the right to mess up. But by talking things through, we can improve. We have to accept that we’ll do better next time and be willing to make the effort to get there.

But still, I’m 38 now, and I’m trying to raise my child in a world that’s a bit less sexist, racist and ableist. I hope he doesn’t have to wait as long as I did to understand certain things. That’s part of activism too – laying the groundwork for tomorrow, making things move quicker for the next generations.

Did ableism affect your desire to become a parent?

I’ve had a visible impairment since I was very young. I’ve clearly grown up as a Disabled person in society. And so, people always told me I wouldn’t have children. That’s one of the common pressures Disabled people face.

There’s this assumption that physically, we can’t have children. Or worse – that even if we could, we shouldn’t. That it’s just not something you do when you’re disabled.

It’s a really strong social pressure. Sometimes I wonder if that’s what pushed me to become a parent – as a form of protest.

Do you see parenthood as a political act?

I think it’s quite personal... Often, when you want to have children, it’s because you want to pass things on. Including the values that matter to you. I talk with my child about oppression and discrimination regularly.

But not having children can also be a political choice. Our societies aren’t in great shape – we’ve got major environmental issues coming. Choosing not to bring another life into this world can be just as much of a stand. It really depends on each person.

Rethinking the norms: towards an inclusive society

How does the French society treat Disabled people?

Compared with the rest of Europe, we’re not doing great. One major issue is institutionalisation – France gets a lot of criticism for this. The country needs a proper deinstitutionalisation process, even if it’s complicated. I’m not saying it’s easy. But it’s one of the main reasons France is such an ableist country. Everything stems from that. It’s used to justify why public spaces aren’t accessible, for example.

When it comes to accessibility, we’ve been going round in circles for decades. That’s because France still believes Disabled people should live in specialised institutions.

So it becomes an excuse not to invest in making public spaces accessible, since “Disabled people don’t go there anyway”.

Who should adapt – Disabled people or society?

There are two kinds of narratives. Sometimes you hear that it’s up to Disabled people to adapt, to make the effort and minimise their difficulties.

And then there’s the more radical anti-ableist stance, which says: it’s not our job to adapt to society or work – it’s up to society to welcome us as we are, without forcing us to suffer and appear “less disabled”.

Because a lot of people have internalised that effort. There’s this idea that we shouldn’t make a fuss, that we should be as invisible as possible, talk as little as possible about our impairments. And it’s hard to break out of that way of thinking. It comes with a deep sense of shame. We’re ashamed of who we are – of what we are – when really, society should be welcoming us as we are.

How do we shift this way of thinking as a society?

There’s no getting around some level of education. As Disabled people, we try to explain to those around us what to do, how to behave with us.

I know that can be a huge burden on us. But I don’t have a magic solution. That’s also where collectives and organisations come in – so it doesn't all fall on individuals.

Depending on your impairment, you won’t experience the same forms of prejudice. I use a wheelchair, and strangers often come up to me to ask what’s “wrong” with me. You just don’t get that kind of behaviour with invisible impairments. But because I’m visibly disabled, clearly marked as such, it changes how people act. Suddenly, there’s no sense of privacy. It’s like my impairment belongs to everyone. People find it so odd that they think it’s normal to come and ask about it.

It’s not something that happens every day – I don’t go out every day. But it’s very common. And it’s something a lot of people in our community experience.

It’s a bit like what happens with children. People feel entitled to act overly familiar. There’s this idea that we’re less in charge of ourselves, less able to decide what’s good for us. We become objects in public space, at the disposal of others.

To build an inclusive society, should we flip the norm and design for those facing the most barriers first?

I think so, yes. That’s a bit what Robert McRuer talks about in his book. If you focus on the person facing the most barriers in society, you’ll also be meeting the needs of others to some extent. That could be a path to explore – even if adjustments will always be needed.

I always say that non-disabled people have needs too. But those needs have been normalised – society already caters to them, so they become invisible. They don’t even seem like needs. Whereas some people have so-called specific needs, just because they’re different from what’s been accepted as the social norm. That creates a divide between people, even though everyone has needs.

Charlotte's resources

• Alison Kafer, Feminist, Queer, Crip, Bloomington, Indiana University Press, 2013.
• Robert McRuer, Crip Theory : Cultural Signs of Queerness and Disability, New-York, New-York University Press, 2006.
• Sami Schalk, Black Disability Politics, Duke university Press, 2022.