Our interviewees give their thoughts on the future of disability activism and disability equality – what needs to be done, and how.
“We need a collective voice”
Paul Sullivan
Paul Sullivan feels the key to the future of disability activism lies in collaboration – but warns that, in his experience, Disabled people are losing their collective voice. He names the developments in inclusive education as one particularly ironic reason for the breakdown in collaboration: “One of the good things people took away from say, boarding schools for Blind people, is you learned about each other and you had a collective sense of community. And I think that doesn’t exist anymore among specific impairment groups, and certainly much, much less among pan-disability, among Disabled people as a whole. I think there is much less of a sense that we’re all together, we all support each other. We need to get back to a sense of identity and community.”
Technology has also, he feels, damaged the collective sense of identity among Disabled people – he admits that the various “gadgets and gizmos” make life easier, and acknowledges that online interest groups offer a new manifestation of support communities, but feels that “all this technology is atomizing us, it’s separating us because we can do much more than we used to do.” Critically, there is also a sense, he says, that “a lot of Disabled people are very anti-banding together”.
The result of all this is, he says, that “Disabled people are not collaborating to fight their cause or to raise their collective voices in the way they used to do”, and that, in spite of the need to “keep the pressure up”, the disability movement has “basically died away”. He says: “If we think that battle’s won and stop reminding people that we’re here and we need to be included, I think that we could see things going backwards – things are going backwards in some respects.”
He acknowledges that activism may look different in the future, but feels there is a pressing need for “younger, intelligent, articulate, energetic people to come forward and to be in places of influence” – people who can “open the doors for the rest of us”. He regrets that there is, as he sees it, “less of a political awareness among Disabled people now than there used to be”, and urges them to develop an understanding of “where the issues lie and how they can be challenged”.
One of those issues is, ironically, linked to technology. He says that “[as] technology changes, we’re going to be having to fight these battles of accessibility all the time. So, the really crucial thing is that Disabled people are included early on in the design process of everything, of goods, services, facilities, whatever. And that will only happen if we keep demanding it.”
“We should be building, and we should be developing.”
Alun Davies
Alun Davies says his idea of how activism can achieve the best results has changed. He explains: “In many ways, I am the ardent fundamentalist believer in the social model that I always was. What has changed is the way I believe we can achieve that, and the way I think we should work towards it. I now take a much more moderate, middle of the road [view]: I still believe in the revolutionary intent of the social model, [but] I don’t believe now we can achieve it through revolution. It has to be attained through evolution.
“Campaigning and activism itself doesn’t change whatever the time or whatever the issues. So the fundamental laws of activism, which are being clear on what you want to achieve; being clear on the difference between strategy and tactics; having your programme in line but being able to adapt how you achieve it; working to build partnerships; working to work in collaboration; identifying what it is the person you’re working with wants; agreeing where to differ, agreeing where you can; building broad fronts; using the campaign tactics of writing petitions, marches, forums, online work – that will not change.”
Nor have the issues themselves changed – he stresses that “we still have to challenge real discrimination and real oppression”, and “where Disabled people are being denied benefits, are being denied justice, where people are being unequally treated, where they’re getting oppressing medical treatment, we have to challenge those things directly and straight-on. And be prepared still to do that.”
What he does feel is important for the future is a united approach. Alun’s experience is that radical groups have always had differences of opinion, but he says that now: “we need to be working in cooperation and collaboration. If Disabled people are engaged on issues today, whatever the issue is, it’s about Disabled people working together, forming alliances with other groups. One thing we did in the ’90s and 2000s, we identified very much with other liberation struggles. So locally, we worked with the BME community and lesbian and gay issues and other women’s issues.
He also feels that his generation of activists didn’t do enough ‘succession planning’. He explains: “The Disabled people activists in this city are still the same ones they were 30 years ago. There don’t seem to be many new and younger Disabled people who have come through. Now, of course, the vast majority of Disabled people, like the vast majority of everybody else, they’re not particularly radical. They’re just human beings who are just living their lives. So you don’t expect the vast majority of people to adopt the radical analysis. There’s always going to be a very small leadership group. But what we didn’t do was ensure that another small leadership group followed us on.
“Obviously there’s still a need for Disabled people to be radical and political, so in terms of today, I think we do need to build Disabled people’s groups. I think Disabled people do need to build together. I think ideally it should be a non-impairment-specific approach. So we should be building, and we should be developing.”
“Maybe the emphasis should be on picking two or three really key issues for Disabled people and focusing resolutely on those.”
Roger Berry
Roger Berry says the current situation is critically about not only seeking to improve existing equal rights legislation, but also about effective enforcement and resourcing.
“First problem, if you’re going to have an organisation that seeks to promote equality and to seek to advise government on appropriate legislation, you’ve got to resource it properly. And if you slash its budget, which is what’s happened in recent years, then that’s going to weaken the organisation, and that’s deeply troubling.” He adds that funding issues also percolate down to individuals’ abilities to exercise their legal rights, with factors including cutbacks in Legal Aid and shortfalls in the Social Security system: “I know lots of people for whom all of the equal rights legislation we have on the statute book is absolutely meaningless because they’re not in a position to enforce it. Either because they don’t have the money to employ a solicitor, or because they’re not well informed on the legislation because we, as a society, don’t do enough to inform people about what their rights are. There’s no point having a law, or legislation more generally, if the means for enforcing it aren’t there. If that’s not there, the law’s worthless.”
He acknowledges that the Disability Rights Movement has achieved much: “There’s no doubt that Disabled people are listened to more than was the case 10, 20 years ago. I think politicians and others find it very difficult now to ignore what Disabled people are saying, but there are still those who, if they can, will. And that’s why the struggle continues.”
He points to specific things that still need to be done: “Today I think the whole independent living issue is a much liver issue, but I think much, much more needs to be done to ensure that Disabled people have an independent living experience that they want, rather than what’s imposed upon them. I just think people have got to keep speaking out.”
Progress has, he admits, been slow, and he regrets that the only way “social change can be achieved in societies like ours” is by tackling issues “one by one”. He says “if you try to do everything at once, there are people out there who will prevent you doing it because it is too much in one go. What just heartens me about this in a sense is it’s the inevitability of gradualism. Maybe the emphasis should be on picking two or three really key issues for Disabled people and focusing resolutely on those.”
“Those young people need a lot of support”
Hilary Sutherland
Hilary Sutherland’s concerns for the future centre on the breakdown of collective identity with regard to deaf schools. She says: “I don’t think we can guarantee that Deaf schools will still exist moving forward. And that concerns me, because you need to have a strong Deaf identity to be resilient, to feel like it’s okay to be Deaf, to feel like it’s okay to be different, and to be proud of that. And I think if Deaf people are fragmented from each other, it’s harder to develop that.” On the other hand, she acknowledges that the dynamics have changed, and that young Deaf people now “interact in different ways, through social media, and they have different connections in different ways.” She adds: “I think for the younger generations of Deaf people now, a lot of them have grown up being mainstreamed, so they don’t need a strong Deaf hub, maybe in the way that older generations do.”
However, mainstream education is still not, she says, the right option for all Deaf children. Some, she says have “other complexities that are more significant than their deafness”, perhaps because they were born very prematurely. “I do really worry about those children, I’m not sure that they’re getting the right support always. And also, often, because they’re Deaf, maybe there are other things like Autism or another needs that aren’t acknowledged or diagnosed. But they think everything’s because of the deafness, deafness accounts for any difficulty the child’s experiencing. And I think lots of people don’t realise how to match their needs.”
Hilary previously worked for the National Deaf Child And Adolescent Mental Health Service, NDCAMHS, which, she says, “is really important as a service to be able to help families to be aware that those young people need a lot of support”. But, in spite of the vital work the service does with vulnerable and isolated young people, she questions whether it will still be in place in 10 years’ time. She says: “The current funding position that we have, NHS cuts happening constantly, who knows what’s going to happen and who knows what the future’s going to bring?”
“Get stuck in!”
Laura Welti
Laura Welti feels that since 2010 in particular, many hard fought-for advances in disability equality have been lost, including changes in the benefit system, a fading awareness of things such as the accessible communications, guidance and procedure requirement of staff at, say, the Council, plus a general change in attitude towards Disabled people. But looking to the future, she says that top of her wish list is that “Disabled people are viewed as an asset, not a liability” – that they are valued, and that there is “meaningful inclusion”, part of this being the legal adoption of “the whole of the convention on the rights of Disabled people”.
But how can Disabled people help move these things forward? “Get stuck in!” she says simply. “Whatever your passion around disability rights, there are groups and collections of individuals campaigning on them. Even if you can’t get out of your home, it doesn’t mean that you can’t be involved, especially these days.” However, while extolling the potential of online groups to give everyone a voice, she admits that “there are huge numbers of Disabled and older people who miss out completely on those things”, and says it’s important now to try to get more people online. She adds that “there’s not, perhaps, been enough done by the Disabled people’s movement to make those with hidden impairments feel as involved, as we’ve assumed they are”.
“My aim is that we engage a whole new generation. With social media and running projects like this, rather than an old-style campaigning, we’re hoping that will help us move the [Bristol Disability Equality] Forum on to that next generation stage, where I’m sure people will be wanting to do different things in quite a different way to the way that we’ve done them – and more power to their elbow, I say.”
“I think we’ve gone backwards.”
Penny Germon
Reflecting on what was achieved by disability activism in the 1980s and 90s, and where things currently stand, Penny Germon says: “Generally across equalities, I think we’ve gone backwards, and I think that is true for the Disabled people’s movement. And that’s serious. It’s like, ‘Really? We have to do all of this again?’.
She praises those who have been “carrying on the good fight”, but acknowledges that many of those who were at the forefront of disability activism in the 1980s and 90s are now focussed on their careers. She says: “I’m not as active as I was, and ought to be. I’m active in the sense that I live my life and I go to work, and I try and use the influence that I have to increase equality. But did we leave enough of a legacy?
“I think Disabled people in the last 10 years have been under attack. Austerity has undermined our position significantly. I think we’re in a really precarious position. And when I think about where we are in terms of our right to speak for ourselves, the kind of whole co-design thing – where is that? I think we need to be united. There’s lots of different people doing different things, but perhaps what we’re not doing enough of is coming together as a collective.”
“It is worth your while getting to know how government works and how to drive change.”
Will Bee
Reflecting on his involvement with GLAD (Greater London Association for [later of] Disabled People) and subsequently with the Disability Rights Commission, Will Bee has a key message to pass on to the new generation of disability activists who wish to achieve change at legislative level. He says: “It is worth your while, some of you, sweating the detail, getting to know how government works and how to drive change so you can tell those people who are attempting to do it what they need to do.
“Organisations always have lessons to learn: you can win the argument, you can win the popular vote, you can get ministers on side, you can even sometimes get the legislation, but actually understanding government and how it works is the hard bit on driving through change, and particularly with central government, where ministers change jobs every 18 months to three years.”
But that process of getting people with influence on side can be achieved in other ways too, and he urges everyone to give their opinion, in whatever way they can – because this will make a difference. For example, he highlights the fact that disability rights issues with regard to rail transport command a huge amount of time in the press and in parliament compared to buses, and says part of the reason for this is that people not speaking out. He explains: “By and large, people who use buses are outside London, they’re on low incomes, they don’t complain a lot, they don’t make a noise, they don’t write to their MP, they don’t immediately Tweet.”
“It’s important… to push the social model agenda.”
Meryl Gaskell
“I think there’s an awful lot more to be done. We’re on a continuum, it’s not stopped yet, so it’s important that there are new people coming through who are activists in the field, and to push the social model agenda.
“Organisations like Bristol Disability Equality Forum are there to support, to nurture this growth and they can provide a coordination role and help people to work together and move things on in all sorts of different areas. There’s so many different areas that need looking at and working on – for instance, challenging the city council to ensure the quality of access to all the services. Do it!”
“I’d like to see some more radicalism.”
Ian Popperwell
“Things aren’t okay. We fought for anti-discrimination legislation. We went along to all the demonstrations and got it in the end partly through those things, but partly through good lobbying. We have the equality now. We had the Disability Discrimination Act in ’95. But there are still battles still to be won. I think things are slipping back. People are doing things now that they used to do – doing kinds of training that we moved away from years ago for really good, thought-out reasons. I really think we need a good, strong, thoughtful, nuanced, Disabled people’s movement. Be able to argue rather than just use rhetoric. I’d like to see some more radicalism. I’m nowhere near as radical as I used to be, but sometimes I feel like I’m still more radical than a lot of other people. I’d like to be challenged. I wish I see so many battles that need to be argued for Disabled people – the employment issue for instance – it’s still all right for Disabled people to believe that they can’t work and shouldn’t work. It’s incredible.”
“I think we’ve had the first wave for the Disabled people’s movement, and we’re in that holding zone before the next wave really takes form.”
Liz Crow
Liz Crow feels that Disabled people’s activism is currently ‘dormant’. She explains: “I think movements go through cycles or waves. I think we’ve had the first wave for the Disabled people’s movement, and we’re in that holding zone, before the next wave really takes form. Each movement wave has to adjust the previous form and find something that fits the context that they’re in now. Intersectionality is part of that, but it’s also looking at the methods we use in activism; whether the arts has more of a centralised role to play; how we expand our horizons for what activism is beyond the really big spectacle activism.”
She feels the next generation of activists have the potential to remodel and improve on what has gone before – but hopes that in doing this, they don’t “lose sight of the historical knowledge”. She says: “My hope is, with newer generations coming in, that the legacy is also drawn into it, so that the incredible strides that we’ve made through things like social model are not lost. You’ve got a movement that, for all its flaws, has an incredible amount of experience and expertise.”
She recalls with fondness the exhilaration that came with being part of a huge collective movement: “I feel incredibly fortunate to be there in the very early stages of a movement. I was there at a very, very precious time. I feel a sense of sadness that what we had has dissipated. That’s a loss for my generation, but also, I would love us to be able to give that to the next generation. To have the joy of it, because perhaps [that] more than anything keeps you motivated to keep protesting. We have to get back there.”
Back then, she says, there was a sense that activists were “inventing it for the first time”, and that things “could only get better”. But now, at a time when, as she puts it, “what we won is eroded and demolished”, what is the way forward? She says: “We’re facing such terrible times with austerity and now the pandemic and the threats to our lives, that it’s very hard thinking, ‘Right, how do we reinvigorate and fight some of the battles we’ve already fought? And some that are maybe even more terrifying.’
“As a movement, we lost our way. We lost our ability to organise, and keep ourselves mobilising. We lost the clarity, because I think some of the wins that we had in the early days were relatively simple to communicate. If you’ve got public transport, and a whole sector in society can’t use it, it’s not public. It’s really hard to argue against that. Once you get on to much more complex issues, particularly things like the right to be alive, it’s much, much harder stuff to argue and to communicate effectively. You can’t simply get out on the streets and blockade and handcuff yourself to buses to communicate that. I think as a movement, where we have failed is to find a way of adapting our methods to deal with much more complex things.
“We need to be quite self-critical and reflexive of the ways that we work and keep on updating them. Maybe when a second wave of a movement really finds its form, [that’s] when the joy comes back. Because you really know you’re doing something. You really know you’re part of an identifiable movement. You’ve got people around you who are working for the same ends, and you have a cohesive method for working.”
“I think the main thing is to start from the beginning, and actually look at what inclusion is, and what an inclusive school is, and how we can get our schools to move to that point.”
Ruth Pickersgill
Ruth Pickersgill feels that although the movement achieved many of its aims in terms of inclusive education, the fight is far from won. She says: “It needs constant revisiting and revitalising – it needs an awful lot of work to make it happen. I think it only continued where there were people who had the commitment to make it work.” Referring to one particular Bristol school, she says she is disappointed that she doesn’t see ‘any integration’ between children with learning difficulties and those without. “I don’t think there’s even a plan for that inclusion to happen really. People don’t even know we’ve got a [Bristol Local Authority] Inclusive Education Policy, and I keep pointing out it’s never been repealed. I think we have to start again now, because I think everything has got forgotten.”
She admits that in Bristol, there is “a bit of work going on at the moment of people trying to look at it again” but stresses that the process needs “really clear, strategic thinking and commitment”, “a steering group of people who are willing to put pressure on all the time”, and resources. On that latter issue, however, she points out that while schools often blame a lack of funding for not being able to take a child, this is not the sticking point. She explains that “it should be very rare when you need additional funding. Half the time, the issue isn’t the money. The issue’s the attitudes and the inclusive ways of working. We’ve got to really pull it back, and start saying to schools, ‘Actually, you do have a duty to make your provision more inclusive for most people’.”
“Equality went out to fashion in about 2005. They stopped having that emphasis on equalities and inclusion. They’ve only just started to relook at employing people in that field, but there’s been a whole lot of ground lost in the last 15 years. I think the main thing is to start from the beginning, and actually look at what inclusion is, and what an inclusive school is, and how we can get our schools to move to that point. But I think it’s coming from a different place now – a special educational needs and disability perspective. I’d like to see a revised inclusive education policy with a really clear strategy, and an action plan with timescales.”
Regular interaction between educational professionals and Disabled people, enabling them to hear their views and their stories, is, she says, vital. “If you go through your life never meeting any Disabled adults, then you’re not going to be thinking about how to make your provision inclusive, whether it’s a school or whether it’s adult care. You’re just not going to think about how to make it inclusive. Which is why we’re now focusing quite a lot on how can we bring the voice of Disabled people back again, into planning and particularly into education. Because it’s not there at all.”
Casting her net wider than the inclusive education debate, she says what she is really keen on for the future is to see a Disability Commission, because “there are a number of Disabled groups, all doing things separately. They don’t work together. And I think if we could bring together everybody under a Disability Commission, and have the right people there who’ve got power and influence, I think we could maybe start to have more of a citywide dialogue. I think Disabled people have got left out of the One-City Plan, and all the planning around going forward.”