Eleanor has been involved with disability movement(s) in the UK since the 1980s. In this podcast she talks about some of what she’s learned from her involvement and why Sisters of Frida’s work is important. We also explore Eleanor’s current thinking about the differences between disability rights and disability justice, the importance of intersectionality, and the meaning of feminism.
Lani: Welcome to Sideways Times. This is a new UK based podcast, in which we talk about the politics of disability and disability justice. In this podcast, I hope to have many conversations which will challenge and broaden our understanding of what it means to tackle ableism, and how this struggle connects to other struggles.
Today I’m with Eleanor Lisney, and we’ll be just having a conversation about her and her work. She is the founder, one of the founders of Sisters of Frida. I’m also part of Sisters of Freda. Would you like to say some stuff about yourself, Eleanor? Just to introduce.
Eleanor: Thank you, Lani. As you said, I’m a founding member of Sisters of Frida. I have this thing I used to say when introducing myself. It’s “I have lived in 4 countries and 3 continents. I’ve moved around a bit. I’m a bit of a rolling stone, like a rolling stone that never gathers moss. I’m also a mother of 2 grown-up children and I am part of a trade union, the NUJ: National Union of Journalists. And I still do a lot of social media, media work. For example, I’m part of an organising committee for a summer conference called EVA here in London.
Lani: It sounds like you’re involved with loads of things and got lots of different hats on. Can you tell me a bit about how you came to be involved with disability politics and what kinds of things you’ve been involved with?
Eleanor: It’s been a long time, sort of slow progress. I started back in the 1980s, when disability movements started going in the UK in a way. I started working for a disability culture arts publication here in London, and then I moved to France, where that stopped. But that started my interest in disability politics, disability culture. I was just a stay-at-home mum for a while after that, and then I went off to the States to do some postgrad studies. And I was in Austin, Texas. And the disability movement there was quite strong, and I used to go and listen to some of the advice and challenges that they face, and a lot of my disability politics if you like was formed in the States.
Lani: Can you tell me a bit about Sisters of Frida and why you’ve decided to set it up? I’m guessing there was some problems with the general disability movement that you saw, that you wanted to go and maybe have an influence on changing.
Eleanor: I think like many disabled people, you don’t really think about the gender element in disability. It happened because the Million Women Rise Sabrina Qureshi, she invited me to go and speak at Million Women Rise at Trafalgar Square about domestic violence and disabled women. And I asked my friend, Michelle Daly, to go with me. And from there, we kind of realised that we don’t really talk about disabled women. We don’t really talk about sexual violence and disabled women’s health issues etc. And found that there was this huge gap between women’s organisations, which doesn’t talk about disability, and disabled organisations that don’t talk about disabled women’s issues.
So from there we started talking with each other and with other women. We came together over tea time at Euston Station and it just sort of grew from there, and ideas from each other, other disabled women. And the whole Sisters of Frida was born from that.
I should also say that at that time I was also working with an organisation with a cross-departmental advisory quango with the government. It was called Equality 2025. It was the first ever disability equality network. However, that kind of died under the coalition government. But a lot of what I learned about disability rights, disability equality, was from my colleagues from that period, coming back to the UK.
Lani: So through 2025?
Eleanor: Equality 2025, yeah. And quite a few of the people in Sisters of Frida at that time are also from Equality 2025. For example, Michelle Wortham has been a great person to teach me about UK disability politics. And also, for example, Zara Todd used to be also in Equality 2025.
Lani: So what was it that you learned or that struck you about Equality 2025 particularly that stays with you from those days?
Eleanor: I think it’s generally working with government and how that has its limits. And how it changes according to the winds of change in government, in politics. That was during the Labour government, although that wasn’t brilliant, but there was a whole load of things that can came out, like Choice and Control and papers like that, that gave disabled people more of a say in local government and politics. Although at that time a lot of people say, “Yeah, well, you know, it doesn’t really make any changes whatsoever.” But it gave some kind of validity, it gave some kind of valid proof that we were there as a voice. Even if people think that we weren’t very effective, still being there said something, I think. And we were consulted.
I think that in the last 6 years, we have seen that the change of government meant that all that was put back, certainly, and I don’t think many people remember what Equality 2025 was about and even existed.
Lani: So some of those concepts, like the Choice and Control agenda, and pushing the inclusion of disabled people, or the consulting of disabled people through those networks, some of those things for you were very valuable achievements that we made.
Eleanor: I think so. I don’t know if ‘achievements’ but it gave a space for disabled people, even if those people who were in Equality 2025 were not said to be representative of disabled people. And certainly a lot of disabled activists were put out that they weren’t chosen. For example, I know there were questions as to why I was chosen, because I only just came back from the US, and certainly I had no record. But one of the things that I appreciated was that it gave me, as somebody who had not had any experience to go in, and I think my voice was seen as as valid as anybody else. And I think that’s a problem sometimes with the disability movement, is that a lot of people, people from ethnic minorities for example, are not seen to be part of the movement. And there are very few BME disability activists who people would think of immediately as being part of the disability movement. And it’s a very, very white place, the disability movement in the UK. And anywhere else, probably.
Lani: Is there anything more you want to say about that, about that white culture in the UK of the disability movement? Or it grew up, or how it can be challenged? Or anything? You don’t have to, obviously.
Eleanor: I think it’s important for them to be seen to be there. And it’s important to include BME, BAME disabled people. Just as it’s important to include LGBT. That’s another thing, that LGBT people do not seem to have a huge voice, for any reasons, I don’t actually know. But I know I’ve been attacked by a disabled man, who said that by starting a disabled women’s collective, I am being divisive, that there is no gender in disability. And for, I think, some people, they just think that it’s the same for race issues. Or sexual orientation issues. That you’re just first of all disabled. And then the whole intersecting equality strands are not considered.
Lani: So that brings us on to two questions I was going to ask you about. What does intersectionality mean to you? We started to talk about how it connects, the intersections, how they’re often not considered in the disability movement, or not considered in a good way. What does intersectionality mean to you?
Eleanor: I think it sort of ties in for me with identity politics, and that can be quite conflicting. For me it’s quite natural for me to think, “Oh, well, I’m an East Asian.” But then I’m an East Asian who’s also disabled and a woman. And the intersecting thing is that sometimes those separate identities are not included. For example, when I’m in a disabled people’s space and I don’t bring in the fact, first of all I’m an immigrant, so I’m not brought up and have the same history and culture as other disabled people in this country. I’ve never been to a special school, so I don’t know the politics and the whole survivor history, narratives that go with having been to a special school. Very often when I do attend disabled people’s organisations’ meetings, there can be very few of us who are BAME. And it can get difficult.
I remember once I was speaking and everybody said, “Oh, yes, that’s good that you spoke about being BAME in disability context.” But immediately after that, it was like I might as well not have spoken.
Lani: So there’s a silence kind of afterwards.
Eleanor: Yeah. I remember being very surprised at a meeting once, and somebody said at the table that, “Oh. BME disabled people don’t come to these meetings because they hide disabled people in their culture. Disability is not accepted and they hide their disabled people.” And I’m going, “What?” But it’s difficult to challenge those speaking in a casual context, because if you challenge that, you could say to have hijacked the conversation. Because the conversation, the focus is on disability, is not on race identity. And I’m not confrontational type. I’m learning to be better at it, but I’m not. And we’re not taught that. And I think, to some extent, we have to help each other in learning how to challenge the majority, when you’re in a place like that. It’s the same when I’m in a BME context when there are disablist attitudes there. I have to learn to challenge that, and I find that I can challenge that easier than at the disability conference. They may not be overtly racist remarks, but it’s difficult to challenge.
Lani: So then it’s important to build allies and work together to challenge that dominance, right, that culture?
Eleanor: Yeah. And allies is difficult as well, because they don’t always understand the whole part. And it’s not like BAME is one single unit. They’re very different personalities.
Lani: Of course.
Eleanor: So it’s not easy, but it’s getting easier, I think. It’s getting easier for me because I’m learning more about it: learning more about how to use the language, and strategies about how to do certain things.
Lani: Strategies about how to challenge or how to steer conversations?
Eleanor: Yeah, sort of. I find very few people of colour who could actually be there to talk about these things, because there’s so few of us. In a way, that’s a problem, because it’s a chicken and egg thing. You can decide that you need more people of colour in the disability movement. However, if we don’t see other people of colour, we don’t join in. It’s just as simple as that. It’s not whether you want in or you don’t want in. It’s just that if you don’t see your own kind, it’s quite natural not to be there, because why would you want to be in a place where you are an outsider? Even if the people there are perfectly happy to accept you, or seem to accept you, but you have to compromise your own identity and assimilate, if I can use that word, to be there.
Lani: You don’t want to assimilate. That seems not a goal of a movement or even a space, really.
Eleanor: No, but it’s just learning how to do that. And you only go to spaces of your own, whatever you want to call, your own people. You certainly very often don’t talk about disability, because it’s not something that people want to talk about, not in my culture, anyway. But it’s difficult to ignore your access issues. And therefore you have to bring those in.
Lani: We’ve talked about intersectionality a bit and identity politics, and moving towards the movement stuff. I was wondering, and we talked about bringing in women’s issues and race issues. I was wondering, what does feminism mean to you? Because you’re a very strong feminist.
Eleanor: Thank you. I’m not sure I’m a strong anything. I’ve not really studied feminism as a theory or gone to any feminism classes or courses, or anything like that really. I think for me, feminism is being able to do what you want to do when. Your gender shouldn’t limit your opportunities. Having said that, I realise that it’s not, even if you think you’re a feminist, there are a lot of things in this world that put a stop to your choice, because it’s just easier to conform. I know I got married quite young, and if I was a feminist, if I wasn’t a disabled person, I think, thinking back, I might not have got married at that age. And I think I got married then because I had this internalised idea of myself as not being worthy. And I think that if I didn’t marry the first person who asked me, I might never get another chance. Whereas I don’t think that I would think that if I was a non-disabled woman? So that’s why I’m saying that your choices are compromised, and that’s the intersections they’re kind of in.
Lani: Where you are.
Eleanor: Yeah. And also sort of being a mother, being a stay-at-home mum, although a lot of non-disabled women choose that and do that, I think that in my own case, if I hadn’t been disabled as well, I would have probably have gone out and got a job, because it would be easier. It was certainly difficult if you were a disabled mum, to go out and work as well. There’s just too much stress and not that many opportunities.
Lani: We were talking before the podcast about the differences between disability justice and disability rights, and your sense of justice and how that came out. I’m wondering if you want to talk a bit about that. You were saying about your sense of fairness and where that came from
Eleanor: I’ve always thought and stated quite strongly that we want disability rights, not charity. It’s rights, not charity. And I’ve recently come to know about the term disability justice. And I am still learning about it and I want to research more about that, but it has an appeal for me because rights seems so liberalistic, sounds like quite a Magna Carta, you know, “These are your rights.” It’s sort of enshrined in law etc, except that unless it’s legislated, there’s no point. Unless you have access to it, your rights might as well not exist. And this is something that I think I wrote somewhere, I can’t remember in what context, I said, the UNRCPD can say the wonderful things and it’s your human right to have certain things, like the right to education. For example, in this country, we’ve just had legislation saying that we have a right to be on a bus as a wheelchair user. It’s our right above the right of a parent with a pushchair. Now that’s rights. However, that’s no good unless somebody actually enforces it and actually realise that it’s there, it exists, it’s concrete. And you can go and call the police if that doesn’t happen, or you can sue them. I mean, that’s what rights are.
For me, disability justice is more holistic. It’s fair, you know. In the case of the bus again, justice would say that the wheelchair user has a right to that space. Well, I’m using the word ‘right’. Should have more of a priority to that space, because a wheelchair user cannot fold up a wheelchair and go and sit in another seat. You can do that with a pushchair. Also the fact that the wheelchair space exists on the bus is because of the campaigning of previous disability activists, who fought for their inclusion in public transport, and it’s been made that, and again, that’s a right. The justice is for other people to realise it as well. It’s how you look at it. It’s fair, because when you look at all the other facts. Now, this is like when I was living in France. In France, if you are disabled, or in my case, a wheelchair user, you can go straight to the front of the queue. That’s this thing in France. And say that you don’t have to be in a queue. You can be served there and then, you know?
Now, quite often, I do that, but also, if I see an older person or somebody who is pregnant or somebody who’s struggling, I don’t insist on that, because for me, that person has a bigger need than I do. So I think, in my convoluted way, I see that as justice, as, you know, you have to make a decision.
Lani: It seems to me, well, what I’m hearing, I guess, is that it’s about the justice element of to think about things in a more justice kind of framework from your perspective is to think more about the people and the power dynamics that are happening at the time. Rather than relying necessarily on the state law itself to fall back on, we’re looking at something where we recognise that we’re all connected and we all have different power relations and different connections, and that we can kind of move more holistically together, in a way.
Eleanor: Yeah, you’ve said it. I was trying to explain it in my very clumsy way.
Lani: That’s what I was hearing from what you were saying.
Eleanor: Yeah, because it is power dynamics. And just because you are disabled does not mean that in certain circumstances you might be more privileged than, for example, a black person who always gets caught up with the police and gets beaten up, and it goes on like that.
Lani: A black non-disabled person, you mean.
Eleanor: Yeah. So I think that we have to look at each other, and that’s where I think I’ve gone not just with disability justice question but justice in the world, and I think we have to go that way.
Lani: Where do we have to go? Kind of more, I don’t know if I’m picking it up right, maybe not individual, because we’re talking about a collective, but more personal, in a sense, or more a community level or something.
Eleanor: What I would say is it’s less individualistic. So that you consider others apart from yourself, and for example, the law says you should not steal but then what is stealing? Is a banker whose job is to help tax exiles or to pay less tax? In law, that’s not called stealing. But a person who’s hungry who goes to a supermarket and steals a packet of crisps, now that person can get penalised but not the person who can legally steal from other citizens, for example by not paying the right taxes.
Lani: So again, we’re back to a sort of a sense of, that’s what your describing to me as your sense of fairness, in a way.
Lani: What do you think’s been the most influential elements on you about how you do your activism or how you do your work? I know sometimes you say you’re not very political, but let’s take the work in a holistic way around Sisters of Frida. What’s been the most important things about your practice in that framework?
Eleanor: I think it’s a recognition of my own privilege of the opportunities I’ve had and the experiences that I’ve had. And I think that what drives me is being able to create opportunities for other disabled women: either providing the space for it to happen, or using my own skills to be able to create a space. Or make that sort of opportunities, or to campaign for more opportunities. Or just to campaign against the injustice that I see happening because of cuts, because of inequality. I will say that equality doesn’t mean being the same. Just to make an example, you can’t say you want equal rights, for example, in a country that nobody has rights, because that means that you don’t have rights either. Because it’s equal rights, in a country that nobody has rights. What’s the point? So you want to work in so that everybody has those rights, but that you shouldn’t be excluded because you’re an immigrant, or because you are female, or because you are a trans person.
But I don’t think I’m very good in politics because I don’t always work the kind of theories in my head. I don’t think I’m a very theoretical sort of person, I’m a very practical person. I like to do, to get nuts and bolts and figure out how to put something together. I’m not the sort of person who would draw the diagram and say, “This is your directions.” And that’s another thing, I’m just no good at giving directions. And that’s all part and parcel with it. I’m always a sort of more practical person. Behind the scenes, I usually am, prefer.
Lani: What do you think is the most important thing we need to be tackling at the moment? Given the current times: Brexit, Trump, blah blah. What’s the most important things that we need to be doing as disabled women, as people interested in changing things, I suppose, in a broad sense?
Eleanor: I don’t know why this phrase came up to my mind. “Gird up your loins.” It’s a realisation that this is a time of change, and the centre cannot hold. All these kind of words that come out in the press these days because of what’s happening. And it’s to be savvy about what is happening so that you can do your bit. I mean, half the time, sometimes I think, “I think I might go and just do a garden,” because then I don’t have to worry about what’s happening. And having friends being deported because suddenly European citizenship doesn’t exist anymore. And all sorts of things, you know. People losing their benefits, losing their PIP, not being able to have the care packages that they need. But everybody should do their bit, and it’s difficult we all know that as disabled women we all have limitations on our time and our energy. And a lot of physical things or our mental health. That it’s not easy. But I think it’s very defeatist if we think that because we’re disabled we can’t do anything. And I think that would be a real failure, and that would be really sad.
Lani: I guess we’re becoming towards the end of the interview. Thanks for talking to me, it’s been really good, actually.
Eleanor: That’s nice to hear.
Lani: Was there anything more you wanted to say to people about what we should be doing, what you’ve learned through your years of activism, any advice you wanna give people?
Eleanor: No, but I think it’s important, even if you’re just mentoring, I don’t know what the word is, or just helping, supporting, even if it’s just one person. Because I feel like I’ve been a recipient of help from unexpected people, and that has had a consequence. And I think that everybody can do that. If you have one person that you can advocate for in whatever capacity that you can. In a good way. I mean, not if it’s not wanted. Don’t try and be a busybody. But if you are asked for, you know, somebody asks you for help and you are able and capable of offering that help, then do so.
I mean, I’ve had places where I’ve been with other disabled women, and somebody comes and asks for bus fare or something like that. And this is quite a well-off disabled woman that I know and she said, “Well, I’m disabled, you shouldn’t ask me.” I’m thinking, “Huh?” That’s neither here nor there. In that position then she could help, and I thought that it was perfectly within her capacity to help. And I didn’t think that that man was just having it on or a drug addict or anything, he just really needed a bus fare to get home. And she refused on the principle, she said, because she was disabled and therefore a disadvantaged person. That’s just one example that had come into my mind.
Lani: So really we should be working out what we can do and doing it, however it is, whatever it is, and giving ourselves to it.
Eleanor: Yeah. It’s not just being a do-gooder, because that’s when I think you have to check yourself, that it shouldn’t be an ego trip. But it’s because you’re part as well, and you need to help each other and be connected with each other.
Lani: I think that’s a really good note to end on, because it’s not about being a do-gooder, it’s about being connected to each other and knowing we’re connected to each other, and working from that position.