For some years now many disabled people have been involved in advisory groups. These are usually established to enable organisations such as local government, central government, health organisations or other national and local bodies to meet their obligations towards disabled people.
These advisory groups are not limited to the disability community - but my reflections on their workings are.
As some advisory groups exist now there are problems resulting from a lack of commitment, or a tokenistic approach to “doing the right thing” rather than a real desire to include disabled people’s perspectives for effective results. Those working with them admit they don’t always work and that there is a need for change.
Disabled people are nearly a quarter of the population now at 24%, (Statistics New Zealand,) and the present approach needs some serious re-thinking.
Selection of the group is often not by the community, or collaborative, and is controlled by the organisation, so there is inadequate community “buy-in” and support for the group. It is perceived as closed and exclusive and not representative of the whole community. There is a risk that results will be biased by a narrow range of views.
Groups may not be truly interactive with the organisation and endure “death by PowerPoint” with no real opportunity for critique, innovation and meaningful exchange. Members may not have access to all the information they need in ways they can process.
Groups can be low-status, perceived by everyone as powerless, and have little access to the real decision makers.
Members may serve for some time and become co-opted by the organisation, especially if they do not have strong community accountability. This can be the result of poor recruitment processes, and the substitution of an advisory group for strong, mutually respectful community relationships.
Members may have no real community constituency and therefore no real accountability. If they are invisible they will be talked about rather than engaged in constructive conversations within the disability community that will inform and further their work.
The group may not have the expertise or be adequately resourced to do the essential networking or for outreach to maintain a healthy two-way flow of information to inform the process of engagement.
Organisations can subtly control what they hear by setting the purpose and agenda of the group too rigidly. This might be entirely unintentional but results in a lack of creative space for new community concerns, voices and issues to emerge.
In some instances an exclusive relationship with an advisory group may create barriers to wider communication, or be used to discourage different or new voices. The group itself may become a two-way barrier. In the worst cases the existence of a group may be an excuse for a lack of wider engagement, and less rather than more knowledge within the organisation about the disability community.
Of course there are some groups that work well, with few of the above problems, but there is an air of cynical world-weariness among disabled people when this subject comes up in conversation. There is a strong belief that disabled people’s contribution is not valued, and they sometimes even feel “ripped off”
A new approach
It is time for a new, more sophisticated and pluralistic, open and accessible style of disability community consultation and engagement..
Here are a few suggestions.
- Take a positive stance, forget narrowly focused “accommodating” and ghettoising in favour of valuing disabled people and acknowledging the contribution they make to your organisation and the wider community by making an inclusive approach “business as usual.”
- Advisory groups should flow from strong and respectful community relationships rather than the other way around. They should not be the sole means of engagement with the disability community.
- Accessibility is established as “business as usual” in wider community conversations and other activities. Disabled people are interested in other things besides disability.
- Trust disabled communities and disabled people’s organisations to take the lead. But look beyond the usual suspects and recognised service groupings. Spread the net widely.
- Organise well-facilitated face-to-face meetings in small groups or within communities
- Where possible assist with capacity and community building to build strong relationships.
- Offer training in engagement methods and strategy to the disabled community
- Engage through focused and moderated social media.
- Accessible online platforms can encourage straightforward well-structured conversations, but should not be used exclusively.
- Recognise and celebrate the rich diversity of the disability world, taking account of intersections such as ethnicity and culture, gender, LGBTI, family status, and so on in the rich weave of community fabric.
- Look for the grassroots leaders who know and are known and respected by everyone, not just a small single-impairment-focused group.
- Honestly confront, acknowledge, explore and navigate the inevitable power imbalances inherent in relationships with communities, especially those who are marginalised.
- Last, but certainly not least, employ qualified disabled people in meaningful, valued roles where they can help with disability community engagement.