From Invisibility to Self-Determination
Disability rights activist and equality trainer Barbara Lisicki talks to Fanny Malinen for Municipal Enquiry about disabled people's rights in the pandemic and under austerity, and what social care and community inclusion would look like based on rights and solidarity
FM: The pandemic has exposed severe shortcomings in health and social care systems. But despite disabled people being over-represented in the death toll, there's been remarkably little attention on how the pandemic has affected disabled people. What have been the main impacts?
BL: Disabled people are one of the key groups of people that have been shielding, so a big impact on disabled people is just being stuck indoors. We spent years fighting for a more accessible world so that we're not stuck in our homes or in some institutional setting.
(Barbara Lisicki - centre)
Many disabled people also have pre-existing health conditions that create a vulnerability. Covid often has a long-term impact on people's health even if they have been very healthy beforehand, and if you are already managing a health condition, having another on top of that is a concern.
People are frustrated at the lack of information. Disabled people have had to stay in, we've had to shield, in some cases staying in for a long time. For people who have got relatively independent lives and are living how they would choose to live it has been hard, but I think it has been even harder for people who are already in a difficult situation: for example living in sheltered or supported housing; or people who don't have it explained to them properly.
When the Welsh government and the Scottish government did daily briefings on TV, they had sign language interpreters. The British government didn't! And these were daily briefings people were encouraged to follow to find out what was going on. It is just really poor and excludes a large number of Deaf people who access information via British Sign Language (BSL).
FM: There is also a contradiction between disabled people having to stay in their homes to stay safe but needing personal assistants (PAs) to come into their homes. Has there been any protection for disabled people who receive home care and support? What should be done to keep disabled people safe?
BL: Most people I know are making sure that their PAs are taking the best precautions they can. All disabled people I know are very aware, I always ask my PA to wear a mask when she goes out. Some of the organisations for disabled people are setting out guidelines for PAs, giving guidance to help people stay safe.
A key problem is that disabled people who employ PAs have not been given any additional budgets to ensure the supply of PPE, for example, so it is left up to them to identify the funds from existing resources. I believe that this is a failure of central government. Local government is stretched to breaking point so should be allocated additional and specific budgets to address the problems arising from Covid.
There is also a problem with getting short-term cover for PAs who have to isolate. How is that resourced? We have no clear answers, no identified resources and the test and trace system is in chaos, with people having to wait a long time to get tested and tests often not being available locally.
FM: What strikes me is that giving guidelines and advice are being given by disabled people's organisations rather than any public body. Why aren't, for example, local authorities stepping in?
BL: I’ve had one letter from the council about Covid, and I think that's the generic letter that went out to everyone. But in some ways, we are very used to taking the lead because we know governments will not factor us in. Disabled people are just not in their consciousness or on the system’s radar.
And I think it is because they don't care, in the same way that the government discharged a lot of older people from hospitals into care homes when they knew Covid already existed. This was a shockingly irresponsible approach to implement and many older people died as a result. The government has blood on its hands.
They don't value the lives of disabled people and older people who have got impairments. This has been true for a long time but has been brought into sharp focus with the Covid crisis.
FM: It’s arresting what you say about having to stay in despite having spent years fighting to be able to go out. I find it astonishing how much the public conversation around the pandemic has just taken for granted that disabled people are vulnerable, all disabled people are going to have to stay in and nobody's asking any questions about how long that's going to go on for.
BL: You're right. Those questions aren't being asked, and I don't think there is enough information specifically for disabled people. People are just encouraged to stay in: don't take risks. But when the situation is changing for everybody else, the message for disabled people has not been nuanced or altered in any way.
FM: What does tell you about the way disabled people are viewed as part of society?
BL: There is an assumption that disabled people don't have any contribution to make to the community, that there is no active life. And that disabled people don't live in the same way as other people do. For example, I'm a parent and – this is going back nearly 30 years – when I tried to find a buggy that I could put up and collapse, I found it so hard to find a design I could actually manage. And I just thought, I've got weakness in my hands, but if I'm struggling with this there must be other parents that are too, especially if they're trying to open and close a buggy while holding a baby. And I realised just how poor and undeveloped design of everyday items and facilities often is.
The business assumption has always been that disabled people only need to be catered for in an utterly basic way and that there is only a single standard. Standard design is narrow and exclusionary and does not factor in different kinds of access needs. That approach has evolved over the years and in some cases improved – always because of intervention by and pressure from disabled people – but it's still embedded.
Look at housing design, or environmental design. For example, when developers or councils build a housing scheme: there is a wheelchair standard and a mobility standard, and the rest of the stock will be designed and built to be broadly inaccessible, instead of implementing an access standard via concepts like lifetime homes, that is going to work for everybody.
There is, in general, a denial of the fact that being non-disabled is a precarious and temporary state of being. Anyone can have a major accident or injury, get diagnosed with a long-term illness like MS and become a disabled person at any time – or it could be someone in their family, their loved ones. Parents get older (as we all do) and suddenly can't visit anymore because there is no access in the place their adult kids live: there are stairs, or there is no toilet they can use.
The environment is designed to exclude, and people still don't really grasp what true inclusion means. There's overall social acceptance that things should be accessible – if the issue is considered at all – but there's rarely any detail in that and we end up with access disasters like wildly steep and dangerous ramps; cobbled streets that are uncomfortable to wheel on, a trip hazard for some older and visually impaired people; toilets that have compromised space standards; fittings like sinks that are too small and locks that are fiddly, unusable and unfit for purpose.
Care provision under austerity and charity
FM: There is already talk about the economic crisis following the health crisis and how councils will struggle to provide essential services. But councils are already at a breaking point after the cuts in the last decade, and disabled people have already been hit hard. What is it going to look like for disabled people when the next round of austerity comes in?
BL: We know how it is going to look. Disabled people will not get the support or the services they need to maintain a decent and acceptable quality of life.
FM: Will it be withdrawal of services altogether, or more charities stepping in?
BL: People have already had to look to charities to get resources. That narrative has been set. It is part of the overall approach which is that charities have this role to provide; not even supplementary support but central support for disabled people. They run residential spaces. There have always been Service Level Agreements (SLA’s) between the charity sector and local authorities. I think the charities are in trouble because they are losing many of those SLA’s because of cuts.
If you need 24-hour support, local authorities are arguing that – and this has been an ongoing issue over the years – if it's cheaper to put you in residential care than it is for you to stay at home and have round-the-clock care, then you will be put in residential care. And that is massively compromising, because it is saying you're a commodity, we're just going to look at how much you cost rather than considering you as a person who has rights and should be able to make choices about how you want to live.We have been dealing with that one for a long time, but I think it comes into focus when we've got times like these when people are at home all the time, and might need an enhanced level of support services that they possibly weren't getting before.
A colleague of mine has had to move back to her parents to get the level of support she needs, because she knows that the local authority won't supply it. It is one example – of many – of how disabled people are infantilised, as well as being perceived as expensive and burdensome. This unpalatable fact will never be stated explicitly by the different authorities supplying resources or services – but it forms the subtext to their actions.
FM: Charities providing what should be essential services really goes against what disabled people have been campaigning for years, doesn't it? Rights not charity.
BL: Yes. That was the original slogan of the disabled people's movement. It is still as entirely relevant now as it was 40 years ago when “Rights Not Charity” became the founding principle of the Disabled people's rights movement, alongside “Nothing About Us Without Us”.
FM: How does it feel for disabled people when your rights become a commodity and are sold to the lowest bidder, being seen as an object of charity?
BL: Many disabled people are concerned, worried and scared that the level of support they have will be taken away. Care packages are reviewed. Every time it happens I know it's about cutting the hours people get. That's the deal.
There are good people still working in the social care sector, but I have also had people brought in on a temporary contract just to deal with the backlog of reviews of people's care packages. So you are never dealing with anybody who knows anything about you – other than a few notes they have read. It has become a dehumanised, impersonal and mechanistic process.
The Tories’ agenda is to dismantle comprehensive social care systems in the same way they are dismantling a comprehensive health service; they are ideologically driven to do that. Our job is to fight them on it, to defend the gains we have made and fought for, because it won't work any other way. Otherwise disabled people are going to go backwards to the time we weren't getting the support services that were essential for a proper quality of life, to systematic segregation and exclusion.
FM: Can you say a bit more about what that means on the local authority level?
BL: Increasingly the job of home carers has been removed from local authority provision That used to be the standard model. It was always a deeply unsatisfactory way of working, because if you had a home carer from the council, you would not know who was allocated to you, so somebody you might not know would just turn up to your home. Also, you would not know whether they were coming at 8am or 11am, and some people are stuck in bed, they can't get up until that person arrives.
The other huge issue is that shifts were being cut shorter and shorter. Now it has been ruled, following legal challenges, that 20-minute shifts are not allowed; it should be 45 minutes to an hour. But we know that is still happening because home carers don't get travel time factored in. They get a list of people they need to see and they only pay them for the contact time, not the time they are travelling. The system is appalling, unfair and exploitative.
The models have evolved because of pressure from and input by disabled people. The independent living model means disabled people receive direct payments (they are now called personal budgets) and employ their own PAs. But not everyone has got the skills needed to recruit and manage staff.
There was a time we were able to use disabled people's organisations to teach management skills – and also to have a local personal assistant support service (PASS) so that the infrastructure would be in place if something went wrong. People could just call up or make contact and an alternative could be arranged. And because many of those organisations have lost their funding and are gone, that infrastructure has dissipated.
Comparatively, I do not have very high support needs and I do not experience the problems in the same way, but it is very frightening for people who have to deal with the complexities of arranging social and personal support. What we are dealing with is a very confused and muddled system where some of the old ways of doing things still exist, the new models are in there somewhere, but people don't really understand how they work and what is their purpose.
The 2019 Labour Party manifesto contained a commitment to review and overhaul social care and to fund it comprehensively. I agree that this needs to happen but disabled people must be at the heart of any review and changes that follow.
I don't think it's seen as a priority by the Tory government. Local authorities have been in crisis for so long, experiencing cuts and hugely reduced budgets for all their statutory functions, and privatisation continues to be forced on them. Councils are trying to claw back any money that they can. They are always going to pick on disabled people because they're an easy target.
We as disabled people need to set up really robust advocacy networks so that disabled people, who are under attack and at risk of having services funded by local authorities cut, can get support to make a case and not have resources taken away from them.
I think that cuts are part of the agenda in the time of austerity: anybody who looks like they might be getting ‘too much’ will get financially assessed and care packages reduced. And what that means is no disabled person can ever have savings. For example, if you are a disabled person wanting to save for a mortgage, or a new, accessible vehicle – they will penalise you for those savings when you have a financial assessment. You simply cannot have money as a disabled person.
The old model that is still embedded within many local authorities’ work practice has been really problematic in terms of how disabled people can live an equivalent and equal life to non-disabled people. There are many in-built injustices in the system which are hidden until you come across them and realise you will get penalised and discriminated against.
FM: Is it part of the problem that although public provision is needed, it is often paternalistic?
BL: Public provision has to be shaped by what disabled people want and need. The old style public provision was always, like you say, paternalistic and institutional. It was narrow in scope, it was narrow in imagination, it just was never enough. In some cases you had to reject it completely and say: this is not a good, cost-effective, efficient or equitable way to approach service design or delivery.
FM: A lot of people would think charities are better than public provision because they can listen to disabled people more and so on.
BL: It has been broadly accepted by society and governments that charities will always have a key role to play in making provisions for disabled people. I profoundly disagree with that.
Charities had embedded themselves in that sector and made themselves look crucial and indispensable. And for many people they became that. But charities have been identified by the political analysis of disabled people’s organisations as an extension of the problem. For them, providing services to disabled people is a paternalistic business relationship.
DAN (Disabled People’s Direct Action Network) in the 1990s and coalitions of disabled people have campaigned to expose many of the disability charities’ hypocritical practices: they do not employ disabled people in senior, budget-setting or decision-making roles or on management boards. They run segregated institutions like schools and residential homes. These practices are contrary to the principles of choice and control.
A sustained campaign against the execrable London Weekend Television Telethon, a charity fundraising event, succeeded in 1992 in getting them closed down never to reappear on our screens again. It was a significant victory and a warning to the charity sector that disabled people are not theirs to sell and they do not have our permission to steal and distort our image.
(Block Telethon demonstration, 1992)
Most importantly, we sent out a clear message that we would not tolerate the unrepresentative nature of the disability charities – nothing about us without us – and that we were building our own organisations with authentic voices and representation. This is still, clearly, a work in progress and will take a long time to achieve. The charities have all the money and resources whilst we have very little materially. But academic researchers like Dr Colin Barnes, Dr Jenny Morris and the late Professor Mike Oliver have exposed the role that these charity organisations play in the structural oppression of disabled people, and that knowledge cannot be put back in the box. It empowers us to push forward for change.
FM: I also see a lot of charity service provision as backdoor outsourcing – private companies have a bad reputation but charities have a friendlier face. Everybody loves charities. It doesn't have the same connotations.
BL: Exactly. And you're a devil if you criticise charities. It was interesting campaigning around it because we needed to explain to people why we were opposed to things like Children in Need, why we were arguing against people donating to charity. Nearly all the disability charities were for disabled people, not of disabled people, like I said they didn't employ disabled people. Many of them didn't see disabled people as capable of working, it was about disabled people needing care.
There will always be some disabled people for whom paid employment will be hard or impossible, but you can still set up meaningful and enjoyable activities. There are a lot more disabled people who could be working that are currently unemployed, but the system is not flexible enough and discrimination is rampant.
Building solidarity and self-determination
FM: What should local authorities do in terms of care and support provision?
BL: I think in an ideal world councils should have structures that involve and include disabled people. Disabled people should be more encouraged to be local councillors for example, to play a greater role in the political process. But disabled people also need to be consulted more so decisions are not made on the least amount of spending regardless of need.
The 1990 Community Care Act provided for people to be assessed on the basis of need, although this is being overwritten and swept away, because local authorities are saying they just don't have the money to give people what they actually need. So they give people the minimum.
Where is the resistance to these massive cuts that are being imposed on them? You don't have to do many sums to show that there isn't even money now to meet statutory duties.
We need systems and structures where people will be recognised in terms of what is needed. For instance people with learning difficulties – I really dislike the day centre model, but I think you can have an arrangement that is not an institutionalised set-up, where people with learning difficulties can meet together and undertake activities. And a lot of that has been cut. Things like meals on wheels, where mainly older people get a hot meal delivered, are about connection. This has been taken over by an outsourced system where people are just brought a bunch of pre-cooked meals to shove in the microwave.
Marginalising disabled people and pushing disabled people back into invisibility has been significant especially in the last decade. Ideally, services need to be shaped by disabled people. There needs to be consultation about how disabled people want those services delivered. There was a time every local authority agreed that they should support and connect with a disabled people's organisation in their area. That doesn't happen anymore to any significant extent.
And all this of course will have a knock-on effect in terms of the pandemic. People are just told to stay home. You become invisible again.
You fight for thirty years to get visibility and accessibility, to be part of your community and society, and then it has been pulled away from under you. I am concerned that there will be negative repercussions in the longer term.
(Rights Not Roses demonstration blocking a bus, 1994)
FM: Do you see involving disabled people happening through public consultations or something more targeted; for example, how would councils working together with disabled people's organisations look like?
BL: There are bigger disabled people's organisations that can coordinate, like Greater Manchester Coalition or Inclusion London, and then you have some of the more local organisations. There needs to be a relationship and a dialogue going on between councils and them. But also councils need to act on what has been agreed, not just saying "we have talked to them" and still doing what they decided anyway. Because that is where people get cynical and don't want to be involved in any consultation procedures anymore. And there are some very smart people out there that are very clear about what they need and what they want.
FM: I want to go back to what we talked about earlier – how you have long been calling for solidarity and rights, not charity. What would a rights and solidarity based approach to care and support look like?
BL: Self-determination has to be the baseline. It has to be how we want it. Not the imposition of other people, their concepts and ideas. That is the history of it – and the history of charities, which is why we reject the charities so comprehensively. They say "we have understood and we support you", yet what they do is directly contradictory to that. That will always be problematic. It has to be about disabled people and disabled people's collective voices.
(Benefits protest, Downing Street, 1994)
We need to have an academic approach that enables us to undertake ongoing research and develop on the most effective practice models. Things will not stay the same indefinitely. We need to be looking at different needs and different generations.
Without falling into a medical model trap, we also need to look at what different impairment groups need. As an example, somebody with a visual impairment will have different needs to someone with a hearing impairment And it is crucial to recognise the diversity of people within those impairment groups: identifying the needs of somebody of retirement age is different to the needs of a young person. Ethnicity, gender and sexuality must be factored in too.
The debates in academia seem to have become quite safe and static, and they used to be exciting. There needs to be more energy and commitment to an academic discipline of disability studies that starts asking questions that are more relevant to now. For me, the baseline will always be the social model of disability, an analysis developed by disabled people in which ‘disability‘ is identified as a social construct and is separate from impairment. So impairment is the straightforward fact of physical, learning or psychological difference and ‘disability’ is the barriers and discrimination that disabled people experience becuse they have impairments.
In summary, I am disabled by inaccessible environments and discriminatory practices. A Deaf person is disabled by failure of organisations to provide communication support and the failure of mainstream schools to teach BSL in the core curriculum.
We need to have clarity about what applying the social model means in practical terms and connect with disabled people to do it.
The more you talk about this the more you realise Disabled people need allies in this struggle and we need people to come together, build solidarity and campaign for choices and rights. It was true 40 years ago when the disability rights movement was emerging and it is still as true now.
Barbara Lisicki is a disability rights activist and equality trainer.