To celebrate International Day of Disabled Persons, we spoke to Lucie Martin-Jones of WECIL (West of England Centre for Inclusive Living).
If we want to provide services that meet the needs of disabled people, our starting point should always be to listen to them. They are the experts.”

WECIL is a Bristol based charity run by, and for disabled people. They support over 4,000 disabled people living across Bristol, Bath and South Gloucestershire, offering a wide array of services and support. These include advice and advocacy, support with personal payments (giving disabled people more control and agency over their lives), young people’s services, employment support and much more.

“WECIL is about promoting independent living for the disabled community and helping disabled people to enact choice and control over their lives”, Lucie told us. “We aim to provide a holistic experience for disabled people from childhood through to old age.”

Social model of disability

WECIL is a user-led disabled people’s organisation (DPO). All of its work is rooted in the social model of disability – the concept that disabled people are primarily disabled by barriers in society, from physical barriers to attitudinal.

“We must move beyond the ‘we must fix people’ or they ‘need to be fixed’ attitude, and make it about changing society,” said Lucie.

“In some ways the pandemic has shown how easy it can be to accommodate access needs – if the will is there. Before Covid, many people had to really fight for their right to work from home to meet their needs. During the pandemic a lot of organisations realised that providing this flexibility was actually quite easy. These changes can be the difference between someone staying in university, or in work, or managing their health.”

Born out of activism

Advocacy and campaigning has been at the forefront of WECIL’s work since their inception – working to ensure disabled people’s voices are heard and their rights protected and extended.

“The organisation was born out of true activism for change from people with lived experience. Being part of this movement is truly inspiring.”

It is well known that the Covid-19 pandemic has disproportionately affected disabled people. This has included increased social isolation, challenges with accessing often essential medical appointments and therapy, and a dearth of specialist equipment or staff needed to adequately support disabled people with Covid. In this time WECIL, alongside other DPOs across the country, have fought to ensure highlight and tackle these issues.

“One particular issue we campaigned on was that disabled people, including people with learning disabilities, were signing consent to a ‘Do not resuscitate’ (DNR) without their full knowledge – or without their advocate of family being available to make that decision.”

WECIL have worked with Irwin Mitchell Solicitors to produce “My rights and the Coronavirus Act”, an easy-to-read document for disabled people to understand the legal implications of the Coronavirus Act. The charity challenged their local authorities over the implementation of “Care Act Easements”, which removed disabled people’s hard-won rights under the Care Act to independent living. WECIL also coordinated with other DPOs across the country to challenge the Government over Care Act Easements – successfully having them abolished in March 2021.

The organisation was born out of true activism for change from people with lived experience. Being part of this movement is truly inspiring”

Employment support

Employment and employer support is another key part of WECIL’s work.

For the past five years, WECIL have been working with University of the West of England (UWE) delivering Support Services for Disabled Staff. They now deliver part of the Manager Support Service, Return to Campus Service (post-Covid), and topic-specific sessions for managers and HR advisors.

“We receive regular positive feedback from staff members and their managers. One UWE staff member told us: ‘After changes in my medication whilst I was still in my probation period, my health conditions meant that I was experiencing difficulties with getting into work. WECIL liaised with my employer and supported me whilst I was under the care of medical consultants. I have now successfully passed my probation and my health has greatly improved.’”

WECIL not only provide projects aimed at supporting disabled people into work, but also focus on “upskilling employers” to provide more accessible work practices and environments. This way, employers will be better able to employ and retain disabled staff.

“It is about helping employers recognise the value of the disabled workforce and how straightforward it can be to retain staff who are disabled or become disabled while working for them.”

The power of the purple pound

Employment and employee training has huge economic as well as social benefits – as does ensuring that businesses are accessible to disabled customers.

The importance of providing access to shops, cafes, museums, sports facilities etc is usually framed as beneficial to disabled people. However, far more emphasis needs to be put on the “power of the purple pound”. As Lucie explained:

“Many businesses don’t realise that they are excluding disabled people’s custom, losing business, though their failure to be accessible. There are very simple things that can be done such as changing your signage or training your staff – staff understanding how customers or visitors who use a space may use it differently.”

In recent times, business consultation has become a significant income source for WECIL. Their services range from carrying out access audits to ensure spaces and digital profiles are accessible, to Disability Equality training.

“WECIL provide these services to all sectors – from voluntary sector to local government and increasingly to the private sector, sports institution, museums etc to help embed the social model of disability into their practice and to become more accessible and inclusive.”

Nothing about us without us

Many of the issues with disabled people’s support and services are systemic, stemming from a failure to include disabled people and DPOs in decisions that affect their lives.

Lucie sees a clear solution: “codesign”. “You need the people who use a space or use a service to give you their expert opinion. Disabled people are the experts in their disability and know what makes things more accessible for them. We need to shift from consultations (that often take place late in a process and have limited options or impact) to codesign. We need to start by listening to disabled persons’ needs.”

Commissioning

These system issues are arguably at their most acute (or visible) within commissioning practices for disabled people’s services. These services are seldom codesigned, meaning they are poorly costed. They frequently include “arbitrary KPIs” that, at times, actually hinder the provision of high-quality services based on human dignity.

This means that community-based, user-led organisations like WECIL, which have knowledge of their communities and places, are unable to compete with large, national organisations with “bid-writing teams and resources to dedicate to bids”.  Moreover, even when they win contracts, they often have to “subsidise the programmes with other funding, because the pot was too small to provide services that are accessible to or properly meet the needs of their users or cover core costs.”

Working with local authorities

WECIL work across three local authorities: Bristol City Council, South Gloucestershire, and Bath & North East Somerset.

They have a particularly positive relationship with Bristol City Council and are collaborating on a range of projects from adult social care to the redesign and pedestrianisation of the city centre.

One of the key projects they are currently working on is “Make it Local”. This is a city-wide pilot scheme based on Locality’s Keep it Local principles. This project, coordinated by Locality’s local representative, brings together community businesses and equalities organisations to test and develop a community-based approach to social care in the city.

“We are bringing the person-centred approach to the fore again. We have senior staff working within the council with us on systems thinking and understand the importance of bringing in disabled people’s voices.

“Bristol generally is a progressive city and there are lots of positive initiatives around environmental issues for example. We want to ensure that the needs of the disabled community are included. For example, how would diesel- or transport-free areas in the city impact on someone who has to use an adapted car to access these areas?

Alongside the positives, there has also been a fair share of frustration when working with local authorities.

“Firstly, it can be a challenge working with three different local authorities who each have very differently approaches, processes, services, and cater to different communities. There is a major issue with public transport accessibility for people living in the rural areas for example.”

Moreover, “although people often have good intentions, these often don’t translate in practice”.

“While we may do great work around adult social care commissioning, for example, this doesn’t translate across departments. And even where there are commitments in place to commission local organisations, with local knowledge – in reality when the commissioning happens, we often can’t apply.”

Disabled people are the experts

Lucie sees real hope in the number of businesses and institutions looking more closely at their employment practices and accessibility. There is growing recognition among (some) decision-makers that systemic change is required if we are to have services, and indeed a society, that is truly inclusive of disabled people. However, for this hope to become a reality, disabled people’s voices must be given far more prominence.

“The key is for disabled people and disabled people’s organisations to be given decision-making power. These organisations should not be ‘consulted’, they should be codesigning services.

If we want to provide services that meet the needs of disabled people, our starting point should always be to listen to them. They are the experts.”