Tara and Jim spoke about how the approach of H&F Council is much different from that of most other councils and could offer a model for other councils to rethink their relationship to their disabled residents.

Jim: What is the extent of the support that Hammersmith and Fulham Council continues to give?

Tara: The council remains committed, despite Covid legislation, to continue to provide community/homecare support to residents.

The other hugely important point to highlight which also makes this local authority completely unique in this country is that we remain the only local authority to not charge residents for community/home care support. We need to hold on to that commitment very very tightly over the next few months and years because as budgets become tighter there will be pressure, I think, to review that and I think we need, all of us with a stake in that, and quite frankly that is every resident – it should be every resident – needs to be very clear that this is a human rights issue.

Looking ahead we are working with colleagues to develop a plan that moves social care towards a more independent living approach which would be another first for a local authority. We are shifting social care much more to a community focused, choice and control service which is really exciting. You know, disabled people have been talking about independent living as a holistic approach to support for forty years – forty years! – and this is the first local authority that is actively thinking about what that would look like in terms of a fundamental shift away from a very traditional approach to an approach that supports residents to have real choice and control in our lives.

Imagine someone ringing up the local authority and saying, ‘I need some support’; they say ‘Let’s work together to identify the support needed’ and that support is about all aspects of our lives. This puts the person who requires support much more in the driving seat. We’re not there yet, by the way. We are at the beginning of what that transformation looks like. But I think it’s important to highlight that all of that is happening within the context of an unprecedented pandemic.

Jim: Why is it that our Council is moving in this direction of independent living? Are there unique factors locally?

Tara: There are. What is happening here feels not only unique but is also absolutely bucking this trend of what is happening elsewhere in the country. There are lots of people in other local authority areas who are watching what’s happening in Hammersmith and Fulham very carefully and are trying to use our experience and successes to push for change in their local authority areas. I think for me it’s disappointing that some neighbouring local authorities are not being more brave – and even if they are, we don’t see any evidence of it.  The important thing to remember is that the push for change in Hammersmith and Fulham came from disabled residents. And it’s disabled residents, honestly, that are continuing to push for it.

With any campaign, with any protest, the first people to start to raise their voices are the people who are most affected by whatever it might be. That’s inevitable. But as part of that protest, it’s about seeking allies, isn’t it? Other people can join the campaign as a how of solidarity and support.

Jim: How do you manage to get the general disability and rights groups to organise as a movement rather than a series of discrete groups?

Tara: It’s about understanding that we all share a common experience of ‘disability’ – a social construct that sees people with impairments and health conditions as having less value. It’s a process of politicisation, isn’t it? It’s about people realising that they can make a change too and that together we can be more powerful. One of the mantras of the disabled people’s movement is ‘Strength in Unity’. This idea that you are much more powerful if you are a unified force.

It’s about making it personal. It about saying this issue affects you as much as it affects me. So let’s work on this together. Because it’s then less about individuals and more about a community. I think that’s been our power within the disability rights community. The sense of this is a shared struggle for and led by our community.

I’m always mindful of any health-focused campaigning that it doesn’t try to medicalise disabled people as passive recipients of healthcare which can often happen. The idea that disabled people are only interested in saving a hospital, for example, because that’s where we receive treatment. It could just be I’m interested in the saving of a hospital as a human being and local resident – I just happen to also be a disabled person. It’s also going to be about making sure I can get access to the health support I need as a disabled person, but it shouldn’t be assumed that would be my only issue.

Jim: HAFSON has engaged with Imperial Trust about building a new St Mary’s Hospital and refurbishing Charing Cross and Hammersmith Hospitals. How might the disability communities engage in this process.

Tara: It’s important they take the commitment that there is here in Hammersmith and Fulham to co-produce policies and services with residents; you want them to apply that to the design of a new hospital. It’s about taking an ‘inclusive design’ approach and thinking about who will use the hospital, what is important to know and understand about this community, thinking about who is this community and how do we ensure that any new building meets the requirements for anyone who needs to access any hospital services. I think it would be good to suggest that the Trust adopts a similar approach to that which LBHF have taken to the development of the civic campus. LBHF recruited a group of residents. I would suggest a group of disabled residents; or you could have a wider group but it must include disabled residents, to think about what that new building needs to look like and to ensure that the Trust sticks to the principles of ‘inclusive design’.

Jim: There is also the Council’s civic campus which is being rebuilt. How have the disability communities engaged in that project?

Tara: The important thing to highlight is that the plans for the civic campus were turned down twice by planning at the Council and it was only when they were submitted the third time, once the disabled residents team had been set up and was working with the architects and the planners, did those plans get through. What that demonstrates is the value of co-producing development projects with residents to deliver what is needed by the community. The Disabled Residents Team are are partners in the civic campus development. I think that’s the big bit of learning here. I think there may well have been some disquiet in the beginning about this new group of disabled residents upsetting the flow of the work, but actually everybody now recognises the huge value that that group working in partnership with architects and council officers has had. Some people involved in those meetings –  architects and designers – have almost been in tears in meetings because they have just not been able to deliver what has been required when challenged. But three years down the line, they are busy winning awards for inclusive design. So the benefits are way beyond what we’re doing here and now.

What we need to do is get other statutory agencies like health trusts to see the value in what’s happening here and take on the same approach.

Jim: Are there particular issues which have arisen from covid which weren’t being faced before, which you think are germane to broad communities of disabled people.

Tara: All the evidence shows the disproportionate impact of covid on disabled people, if we’re thinking of disabled people as a broad and diverse group.

I think there has been a really negative impact in the language that is used around covid. For example, the huge increase in the use of the language of ‘vulnerable’ and ‘vulnerability’ aimed at people like me. It has allowed for a different conversation to take place that has increased the confidence of medics to take deeply unhelpful decisions around end of life and the quality of life generally for disabled people.

I think medics feel much more confident now to make an end of life decision based on someone’s perceived value and quality of life. This is about health care rationing. It has always been there. But the pandemic has allowed for the recategorizing of more and more disabled people as being vulnerable, has allowed for an increase in the numbers of disabled people being refused treatment. And that’s a huge concern for the 16 million disabled people living in this country.

It’s not just disabled people bearing the brunt of the pandemic. I’m really concerned about the way the media has presented the data about the disproportionate numbers of people from the BAME community that have died from covid – consistently ignoring data on inequality, marginalisation and unacceptable levels of poverty, inappropriate housing etc.

Jim: Do health bosses need to work with actual communities, including the disability communities, in redesigning parts of health provision?

Tara: I think health has got a lot to learn from the community co-production initiatives that are happening in the borough. Health just seems so behind the times in terms of real partnership working with residents and that has to be about the labelling of human beings as patients … this power imbalance between health care professionals and patients has allowed for limits on decision-making around our own health. And it would be great, wouldn’t it, as we attempt to define a ‘new normal’, if there was much more of a partnership approach to how we access health, the time in which we access health services and the types of treatment we receive. And this is not to say therefore that we all have to be medical experts but we are all at least experts in our own bodies and lives.

(It is worth looking at the following article where Tara’s fellow campaigner and colleague at H&F gives evidence to the Commons Health and Social Care Committee 2020 of some of the pressures under which disabled people are living: https://www.disabilitynewsservice.com/mps-told-of-financial-and-psychological-costs-of-demeaning-care-charging-system/ . You might also be interested in the innovative H&F Disabled People’s Commission Final Report: https://www.lbhf.gov.uk/sites/default/files/section_attachments/hf-disabled-peoples-commission-final-accessible-report-june-2018.pdf )