Why Disabled People Aren’t Engaging in Your Research (And How To Change That!).
Hey you.
Yeah, you! The caring professional who wants to redress exclusion.
(I love that for you, and for the world.)
Here’s the good and bad news – you are not alone.
On a weekly basis, I am asked, ‘Where are all the marginalised groups?!’. You know, the ones that you are trying to get to reply to your surveys, engage in your co-design or user-test your digital product – here I’m applying the word ‘research’ in the widest sense. Lots of great people have great intentions to better engage and involve audiences with barriers. They tell me that they keep hearing from the same people and that there are not enough responses.
Making a conscious effort to reach the ‘seldom heard’ is the right thing to do - legally under the Equality Act 2010, business-wise to ensure you maintain your reputation, and morally everyone has a right to participate in society. No one should be excluded, whether unintentionally or not.
So where is everyone? Specifically, here, I am going to consider disabled people.
The social model of disability states that people are dis-abled by their environment, not their conditions, and if we designed things with their needs in mind then engagement would occur. Due to the nuances of conditions, I cannot speak for all disabled experiences – for specific issues you would need to engage those disabled people directly. But there are some overarching principles that you can consider.
1. You are boring and cheap.
Sorry. But you probably are.
You may be excited about your 190-page framework with 16 appendixes (and so will I) but many people won’t. If your ask is not concise, catchy or clear, your long email with attachments is heading straight to the spam folder.
Disabled people have families, jobs, appointments and interests – just like everyone. They may not have working knowledge of your policy frameworks, thus please take time to translate this information into clear English, with clear diagrams and easy-read versions of information. Try to be human, add humour and creativity. For example, as part of preparing our response to the Learning Disabilities, Autism and Neurodivergence consultation, I saw on the floor with Sharpies and drew out some key points from the evidence about each of the key themes. This provided people with a clear visual and a hook to get engaged in further participation.
If you are a proud policy wonk, buried deep in weekly consultations, or a data fiend, then give yourself a break for being boring (soz) and invest time and resources into working with communication and engagement professionals. Meaningful, worthwhile engagement is worth this investment.
Even if you can’t be interesting, you should always compensate people for their time, such as expenses, vouchers, childcare, payments.
2. Your language isn’t inclusive.
Language is power. How you communicate with disabled people is extremely important. Language needs to value diverse experiences and inclusive language demonstrates that you are sensitive to various conditions and experiences.
There can be the perception that preferred terms are always changing, and indeed language does evolve; yet there are some general principles that don’t change drastically over time. This is a great guide from the Government around what to use and what to avoid. Also, language exists on a continuum which depends on the nature, frequency and impact of your words.
If you have any anxieties, there is no problem with acknowledging this and asking someone directly about their preferred terms. Saying something like, ‘I’m mindful to use inclusive language around disabilities and neurodiversity and that there are various views on terms. Can I check your preferred terminology?’. Invite people to correct you at any time.
3. Disabled people already told you.
Consultation fatigue is widespread. People can feel wary of ‘yet another survey that doesn’t change anything’ (of course, yours is different). Disabled people need to see that you are invested in making actual change and value their time. Show that you have already done your homework and cross-referenced what past engagement has discovered. Any further research that is conducted should just be enhancing what is already there.
For example, when I was working on developing a digital learning application, we only went to user testing once we had embedded the best practice that we had already sourced. This involved using the Funkify disability simulator to test the product and to review the design using user stories from the WCAG website.
4. You haven’t made accommodations.
To fully engage disabled people, you need to proactively anticipate that they will experience barriers and mitigate these. At a minimum, in your communications or event invites, state that, ‘We want to make this process as accessible as possible. Please let us know how we can accommodate you so that you can participate’. And if someone gets in touch, then please take the time to talk to them and learn about how you can improve things for them.
As a starting point, please consider:
· Sharing resources and slides in advance to allow the person to process at their own pace.
· Ask if the person wishes to bring a companion.
· Ensure all your communications are accessible, including sans serif fonts, alt text on images and a large typeface on a high-contrast colour.
· Book accessible venues, with clear instructions on the website.
· Share expectations in advance regarding timings and etiquette.
If you are running events online, I have created a resource with some collated guidelines to refer to, including from Glasgow Disability Alliance, AbilityNet and Microsoft. I also created a before, during and after checklist for inclusive online engagement.
Please do not get overwhelmed by this exhaustive list. Identify a couple of changes that will benefit your audiences most and implement these gradually. Showing that you care and that you are trying is crucial to gaining trust and building a relationship.
For example, I ran a session at the Playful Learning Conference called, ‘Equalities Express Mash-up’. In the information about the session, which you can read on their website, I clearly stated the expectations of the session, the rough agenda and how we were going to interact with each other. I shared my email in advance in case anyone needed to contact me about their requirements.
Lynn crouching down outside the Playful Learning Conference venue ahead of her session.
5. You are sitting at your desk.
Just because an email is the easiest way to reach you, it does not mean it is the best way to interact with disabled people. Have you gone out to local community groups? Have you taken part in their weekly meetings? Have you scheduled things around appointments, caring responsibilities and rural public transport?
Regrettably, there is not going to be one TikTok trend that solves all your engagement woes.
‘Go to them’ engagement is one of the most effective ways that I have built relationships throughout my career. Which is wild when tech can be such a force for good. Online channels should complement your research, not replace human interactions. Have a look at my portfolio of student engagement and involvement of lived experience for examples of multi-pronged engagement.
Looking for more?
The above are just a few high level themes to help you get started. For more information and examples, check out:
‘Involving Disabled People in Social Research’ by the Office for Disability Issues.
Poverty Alliance webinar recording of, ‘The PANEL principles to taking a human-rights based approach: Participation’ - 09.09.2024.
Co-Production Guide, published as part of Coproduction Week Scotland 2024.
