In focus | Involving disabled people in decision making

Involving disabled people and access groups in decision-making is a crucial part of becoming a more anti-ableist organisation.

It can help improve access and ensure museums are welcoming and inclusive spaces that are representative of communities.

There are lots of benefits to meaningfully involving disabled people. Those with lived experience are often best placed to highlight potential barriers or feedback issues. Disabled staff, volunteers and trustees should also be invited, but not pressured, to feed back their experiences.

The social model of disability is the idea that people are disabled by society, from physical barriers to harmful attitudes. Museums have a responsibility to challenge and remove these barriers.

Luke Beesley, the archive lead development worker from the Disabled People’s Archive in Manchester, says: “The most obvious reason [to work with disabled people and groups] is that museums are for the general public – and we’re quite a big bit of it. Somewhere between 15% and 20% of people in Britain have an impairment of some kind, so that’s a hell of a lot of people that you’re shutting out from how you organise your work.”

The community advisory panel at the Black Country Living Museum in Dudley includes disabled members who provide direction and feedback that has shaped the way the museum operates.

“For example, they have lobbied for an admission ticket for carers and supported the development of our access map and new Changing Places toilet facility,” says Glenis Williams, the museum’s community engagement manager. “Ahead of reopening the museum after Covid lockdowns, wheelchair users visited the site to define new access routes.”

Working with individuals or groups can also influence the content of exhibitions.

 Michael Powell, programme officer at the People’s History Museum, Manchester, says: “A vast amount of objects for the Nothing About Us Without Us exhibition have been loaned to us by individuals, and it is only through the knowledge and personal connections of steering group members and curators that we have been able to exhibit many of them.

“Our community curators also led on the interpretation, bringing into the process their own life experiences and perspectives, as well as guiding our approach to the production of accessible formats within the exhibition. They would often bring in anecdotal and personal experiences to the narratives and interpretation to help tell the story of the movement and suggest small details and minor – but significant – changes throughout the process of access production. This enabled us to remove further barriers in how we interpreted and disseminated the exhibition.”

Removing barriers

Barriers to involvement range from accessibility to making sure the group is a welcoming space.

Laura McSorley, creative practitioner at Dundee Heritage Trust, who supports a group of disabled young people, says: “We hold regular feedback sessions to make sure that what we are doing feels right to the group – asking what they like and don’t like about each session, and constantly trying to adjust the programme to suit the group’s needs. Flexibility, trust and support are vital to how the group functions and carries on.”

One of the biggest barriers to participation is access. Getting accessibility right is crucial to making sure members can contribute and feel welcome.

Accessibility can be very individual – what helps one person may not work for someone else, so it’s important to regularly speak to members to understand their access requirements.

Six ways to make a group accessible:

• Speak to group members during recruitment and once in place to find out what they need.

• Choose an accessible venue. Look for step-free access, accessible/Changing Places toilets, hearing aid loops and quiet rooms. Ensure there is enough space in the meeting room for people to move about easily.

• Provide presentations and documents in alternative formats, such as large print and easy read.

• Make sure the meeting is chaired effectively, with everyone given the opportunity to contribute. Be clear with members about how this works.

• Don’t overload the agenda. And send it out well in advance so people can read it in their own time and don’t feel put on the spot.

• Include rest breaks in the agenda – and stick to them. Don’t be tempted to skip breaks if you’re running behind schedule.

“We have preparatory meetings with some members in advance, to talk through the agenda and help them to gather their thoughts,” says Isaac Palmer, community engagement officer at the Horniman Museum and Gardens, which has a long-running disability steering group. “This is quite important for members who do not feel as comfortable in larger groups.

“If they don’t want to feed back on the day, or do not attend, this advance preparation means their feedback can still be represented in the minutes and guidance.”

While it’s impossible to include or represent every “type” of disability in a steering group, you should consider if anyone is being excluded – people with social anxiety, chronic pain or severe mobility issues, for example. Could you include their voices through one-to-one phone calls or online meetings?

How to recruit members to a groups

There are many ways to recruit members. The People’s History Museum appointed members for its steering group via a targeted callout, with a particular focus on disabled people’s organisations and disabled-led campaign groups. New recruits have been invited to join or heard about the project from existing members.

The museum advertised its community curator roles through the steering group members’ networks, as well as its usual channels. “We offered large-print and easier-to-read versions of the expression-of-interest form, and encouraged people to submit audio or video expressions of interest, as well as written ones,” says Powell.

Steering group members were also involved in the recruitment process. “We recruit members in a number of ways, including recommendations, an information leaflet and promotion via our website,” says Williams from the Black Country Living Museum. “Our community engagement team also attends regional events and promotes the community advisory panel as part of our roadshow programme.”

Fostering relationships with other organisations can be a key part of finding group members.

“Our group was recruited through cultivating relationships with existing organisations that already support young people in Dundee,” says McSorley. Following a social-prescribing model, each organisation was invited to nominate young people who could benefit from a focused programme of activity and may not normally be able to access cultural spaces easily.

Setting parameters for a group is part of the recruitment process, and can be reviewed as the group develops. Is the group for a specific project, such as the development of an exhibition, or will it be ongoing? Will the input shape content, physical access, events or something else?

Members must be told what commitment is expected of them. Consider how long members will be part of the group – are there set terms or can people be involved for as long as they want?

How often to run meetings?

This will depend on the purpose of the group. A short project may require frequent meetings, while an ongoing steering group may prefer to meet a few times a year.

The Disabled People’s Archive has a steering group that meets once every six weeks, and most decisions are taken during that meeting. A representative works with the staff team between meetings on any problems they have in the meantime, allowing input to still take place.

The project-focused Dundee Heritage Trust group meets fortnightly, with sessions led by a local artist and supported by a creative practitioner who provides organisational, administrative and access support. There are also occasional weekend activities, trips and learning days at the museum.

Paying members and maintaining interest

If and how to reimburse members is a key consideration. At the least, museums should be covering travel expenses, and providing refreshments.

At Dundee Industrial Heritage, members receive a bursary each time they meet. “The bursary also allows for young people to attend and not miss out on lost income from part-time jobs,” says McSorley. “We feel it’s only fair that in exchange for their knowledge and opinions, they are remunerated, as this is a form of cultural labour, and they are contributing to the museum.”

Others choose not to pay members. “The Access Advisory Group is anomalous in advisory groups at the Horniman in that members, except the chair, are not paid,” says Palmer. “This is a decision by the current group members in light of the impact on their benefits or being supported to attend by their employers.

We will change this if members’ wishes change.” It’s important to inform members about the potential impact of payments on benefits.

Engagement is also key. “We are often asked how we keep Access Advisory Group members engaged long term,” says Palmer. “The answer is simple: if the group is making a difference and valued in an organisation, members are aware of that and will continue to be engaged. If members feel like their attendance is not that important, they will choose to do something else with their time.”

When working with groups, it’s essential that this involvement is meaningful, not tokenistic.

“I think when working with any group of people, you have to build a project up slowly and structure it in response to the ideas, perspectives and personal lives of the people you are working alongside,” says Powell. “By doing this, you can create durational projects that build and develop trusting relationships.”

Having buy-in from the organisation is key. In its written guide to setting up a disability advisory group, the Horniman recommends: “Act on advice or discuss why you haven’t. Tell the group when you have acted on its advice and its impact. This builds trust between the group and the museum, which is vital to a productive relationship.”

It can also help to highlight the ways in which individual group members can develop from their involvement. “The group acts as a route to access education – many participants use the knowledge and creative works made as part of the group as an extra-curricular activity to help with applications to college courses or to supplement grades in school or college,” says McSorley.

From accessible recruitment to acting on the advice of the group, it’s crucial that lived experience is valued at every stage, so members know that their voice matters.

Caroline Butterwick is a writer, researcher and freelance journalist