How to empower your service users

Although many charities aim to address imbalances of power in society, the structures and processes of charities themselves can be a hindrance in achieving that goal.

 

Here, we discuss changes that centre empowerment by positioning service users less as an “object” of charity and more as a “subject”, able to meaningfully participate in the processes that affect their own lives.

 

 

Digital case study: Shift.ms

 

The charity Shift.ms provides a social network for people with multiple sclerosis. “Founded by MSers, for MSers, the charity supports many thousands of recently diagnosed people across the world as they make sense of MS.”

 

Their forum allows users to informally discuss their experiences with the condition, while their blog provides a more structured way for users to share their experiences.

 

In their project ‘MS reports’, the charity worked to break down barriers between health experts and people with MS. The project involved people with MS interviewing experts, asking the questions they wanted answered, and sharing these interviews with the Shift.ms community.

 

Service user Polly Mehta reflects on her experience with this project: “Chronic diseases greatly disenfranchise their sufferers; working with charities influencing projects and directing their message hands us back a little of the control we have lost.”

 

This approach of involvement by service users can also be seen on the Shift.ms YouTube channel, where their MSers React series and other videos are used for community members to share their experiences with the condition.

 

The charity believes in “the value of information from experience.” They “encourage members of the community to be involved in everything [they] do”.

 

 

“Nothing about us without us”

 

The concept of “nothing about us without us” means that “nothing about” a community should take place “without” involvement from that community.

 

It relates to the concept of meaningful involvement, which is “that the public should have opportunities to participate in decisions that could affect their environment and their health, their contributions should be taken into account by regulatory agencies, and decision-makers should seek and facilitate the engagement of those potentially affected by their decisions”.

 

The principle of “nothing about us without us” was first brought into the mainstream by the disability rights movement in the 1990s.

 

In the disability rights context, the phrase expresses that “persons with disabilities know what is best for them and their community, and that persons with disabilities must be valued as integral and essential contributors to every sector, industry and community worldwide”.

 

It has been used to assert the rights of people who have disabilities in a policy context: instead of being “viewed as ‘objects’ of charity, medical treatment and social protection,” they are recognised as “‘subjects’ with rights, who are capable of claiming those rights and making decisions about their lives based on their free and informed consent, as well as being active members of society”.

 

The concept later unified other people and movements around the world fighting for the right to participate in policy-making, research, and civil society. For example, this included sex workers and people living with HIV.

 

These principles are applied differently in different contexts, such as in healthcare compared to work with non-governmental organisations.

 

The manner of involvement should also be informed by consultation with the stakeholders which an organisation seeks to help. For example, the Sex Workers’ Rights Advocacy Network reports a situation where participants’ involvement in non-governmental organisations “is tokenistic or completely lacking or even instances when their participation in events or processes is denied”.

 

The network makes recommendations to organisations working with this group to ensure meaningful involvement.

 

These concepts of “nothing about us without us” and “meaningful involvement” are key to centring empowerment within an organisation’s service delivery. This means giving real opportunities for participation of the recipients of your services in the decisions which affect them.

 

 

Challenging violent and disempowering systems

 

The systems of inequality that charities strive to address in their work have often been deeply historically entrenched, and sometimes the charity itself participates in these harmful structures.

 

To centre empowerment in service delivery, charities should interrogate how they themselves exercise power, with an understanding and perspective of the full context.

 

In her #BameOnline talk “A (not so) brief history of imperialism, philanthropy, and race”, anti-racist educator, activist, and community worker Khadijah Diskin explores the imperialist historical context of the international aid sector and outlines how involved organisations can challenge global imperialist structures today.

 

Firstly, she encourages aid organisations to “recognise the history of missionaries through systems of accountability and critical reflection”.

 

She says, “Aid has often been used as a tool of market exchange, a tool of leverage, a tool of control and power within former colonised countries, and that is something that is still going on.” Her talk is a great tool for learning more about this history.

 

Secondly, Diskin advises that the aid sector should repair the relationship with colonised people by allowing them to guide and lead approaches.

 

Rather than having the assumption that “we know the most”, we should recognise that there are often already grassroots-led efforts taking place on the ground, she says. This way, we can avoid destabilising the existing work led by the people who know their own context.

 

She says, “We have to ensure that our work is grassroots-led at every opportunity.”

 

Thirdly, Diskin recommends that aid organisations “restore trust in the communities [they] serve through a commitment and investment to centre their experience”. This involves giving stakeholders in the Global South the resources they need to be able to do the work, which can include material resources such as food, clothes, and water.

 

Finally, Diskin advises “reaffirm[ing] our commitments in challenging the structures of western dominance and hegemony”.

 

This involves applying pressure at home in the Global North to change “the systems of extractive labour, of exploitation of the Global South”.

 

This advice is directed specifically towards international aid organisations, but Diskin’s approach of interrogating the history and systems of power within charitable practices can be applied to other types of organisation in order to reduce harm and centre empowerment.

 

This is a way to address the root causes of inequality within your own practice, ensuring that services move beyond “band-aid” solutions, and prevent further harm.

 

 

Facing challenges in listening to service users

 

Writing for the Stanford Social Innovation Review, Fay Twesky, Phil Buchanan, and Valerie Threlfall argue that non-profits should “listen to those who matter most, the beneficiaries”.

 

Of course, this may be challenging for organisations for several reasons: it could be expensive and time-intensive, difficult to get responses (due to lack of internet access, illiteracy, fear and anxiety, uncertainty about the systems protecting them in giving feedback, among other things), and it can make those working for charitable organisations uncomfortable.

 

They explain the discomfort involved in handing power over from the charity to its service users: “Hearing from those we are trying to help can be challenging. What if they don’t think what we do is working? What if their perspectives call into question our most fundamental assumptions?”

 

For many, they also note, the prospect of creating a rigorous feedback loop may simply seem an extra step on top of an already overwhelming workload in the sector.

 

Difficulties can also arise from the incentive structure of charitable organisations. Daniel Stid, a partner at Bridgespan Group, says: “[Beneficiaries] aren’t buying your service; rather a third party is paying you to provide it to them. Hence the focus shifts more toward the requirements of who is paying versus the unmet needs and aspirations of those meant to benefit.”

 

The authors argue that this “distorted power dynamic” makes it even “more important to seek and use the voice of the beneficiary”. In fact, they state, the harder it is to collect feedback, the more likely it is to be valuable.

 

“That’s because the fields in which beneficiary feedback is more difficult to collect are likely to be the very areas in which the intended beneficiaries are especially lacking a voice”.

 

 

Beneficiary feedback mechanisms

 

Listening to beneficiaries can be achieved through Beneficiary Feedback Mechanisms (BFMs). These are tools “designed to gather and respond to the views of recipients of aid, often called beneficiaries. By responding to the views of aid recipients, organisations can improve or evaluate their projects and be held accountable for project implementation.”

 

In terms of empowerment, BFMs are valued by beneficiaries as platforms through which they can exercise their voice. UK Aid Direct observe that “giving feedback holds intrinsic value for many beneficiaries; confidence to give feedback increases over time; beneficiaries are then empowered to claim their entitlements and know their rights; and closing the feedback loop is critical to achieving a sense of empowerment”. In addition, it ensures that services are properly suited to service users.

 

“Closing the feedback loop” means communicating to beneficiaries what actions have been taken as a result of their feedback.

 

The Foreign, Commonwealth and Development Office (FCDO) Beneficiary Engagement Guide also details some key principles, which they say should be applied in a way suitable to context:

• Do no harm
• Engage early
• Leave no one behind
• Close the [feedback] loop

In cases where obtaining feedback is especially difficult and sensitive, UK Aid Direct advises organisations to develop tools that are sensitive to the situation, and to ensure that feedback is addressed by specialised staff who are fully trained in psycho-social support.

 

Digital technology can be used as part of a BFM, however research in humanitarian contexts has found that their use doesn’t necessarily improve relationships with beneficiaries.

 

Beneficiary feedback mechanisms could also be used in combination with the other approaches discussed above.

 

 

Looking ahead

 

Working in different contexts and with different service users, these case studies, frameworks, and tools will be useful in different ways depending on the organisation. But the different methods discussed here have a common thread of including service users in the processes of service delivery.

 

Many charities strive to address disempowerment, and creating spaces and structures for service users to have meaningful power within the processes that affect them is a transformative way to do so.