Nothing About Us Without Us: The Dos and Don’ts of Meaningful Co-Design
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I’ve been spending the past couple of weeks learning from ten organisations as part of my Churchill Fellowship exploring sex education for adults with intellectual disabilities. I’m currently on my way back from an insightful co-design session at Thorne Harbour Health and reflecting on what makes this style of approach meaningful when it could so easily become tokenistic.
Co-design is not about holding a few focus groups to validate a final product. It’s about ensuring collaboration with people with lived experience from conception to execution, valuing all expertise equally, challenging one’s own defensiveness and unconscious bias, and creating time and space to prioritise accessibility at every stage. People with an intellectual disability (PWID) are, by definition, experts in what it means to live, love, work, and play as a differently abled person in a world structured to exclude and marginalise. This community has long called for “nothing about us without us”, that work shaping the future of disability should be led by those who live that reality.
Cameron, a self-advocate from the Self Advocacy Resource Unit (SARU), noted in our interview that the best thing about working for SARU is that ‘it’s run by and for PWID’ who are not only ‘treated equally’ but ‘make up 50% of the workforce and are equally valued’ (read:compensated). Cameron is also part of Rainbow Rights, a self-advocacy group that sets its own goals, runs its own groups and campaigns, and recruited their own project manager, further entrenching the principle of being in charge of their own future.
Dr. Amie O’Shea (Deakin University), a prolific academic in disability studies, has done significant work on co-design alongside Dr. Patsie Frawley, who I’m excited to meet later in my trip. Amie emphasised that co-design must be ‘from the ground up’ involving PWID in everything from brainstorming outcomes and deciding on priorities, to reviewing materials for misrepresentation and translating jargon. She stressed that co-design isn’t just about centering voices—it’s about enabling participation. The support required for someone to simply be at the table must not be underestimated. This includes the less glamorous but equally important tasks of troubleshooting tech, reading out agendas, adapting documents into plain or easy English or for screenreaders, preparing for potential emotional triggers, making reminder calls, or clarifying Zoom invites.
Co-design is not just about collaborating through conversations but includes accessible resource-building. Nathan Despott (Head of Policy, Research and Advocacy at Inclusion Melbourne) has adapted the dual read approach (see example here) to feature a page written for professionals and an adjacent ‘translating’ page in easy English, drawing out key concepts for PWID. This format acknowledges that information cannot be received in a vacuum, but exists within the interplay of dialogue between professional and PWID and mitigates exclusion created when information designed for PWID is inaccessible to them. Thorne Harbour Health uses this format in their supported decision-making resources, all co-produced through extensive co-design sessions (and planning-for-the-co-design sessions). I was struck by the investment of time in exploring every nuance, from how to order information to debating whether separating discussions by sexuality and gender creates safety or reinforces stereotypes.
As a neurotypical professional, recognising one’s own unconscious bias is central to effective co-design. It requires openness to criticism from people with lived experience and a willingness to challenge one’s defensiveness through supervision and peer reflection. It also means unlearning the entrenched hierarchy that privileges professional expertise over lived experience. Lud Allen, a sexologist based near Victor Harbor, shared an example: he was called out by a participant for consistently using binary examples (big/small, loud/quiet, tall/short) to simplify ideas. The participant asked, “Why does it always have to be two?”—prompting Lud to reflect on whether his own binary thinking had influenced his approach to gender diversity education. It also points to another expertise of PWID, that people with lived experience of marginalisation often have an acute sensitivity to exclusion in thought and practice. Mags, a project worker for Rainbow Rights, echoed this sentiment, noting how self-advocates are quick to challenge any (un)intentional silencing—such as someone rushing a discussion when some members need more processing time.
Addressing such unconscious bias requires more than personal reflection. Courtney and Melanie from Rubix Support highlighted how they invest in personal development through attending Relate’s Sexuality Attitude Reassessment Programme. Relate encourages participants to examine their preconceptions around sex through keynotes on topics such as sex work and polyamory, followed by critical reflection exercises.
Meaningful co-design is also intentional about mitigating consultation fatigue—a recurring theme in my research. Too often, people with lived experience are asked to share their expertise without compensation which is exhausting, especially when they so rarely experience tangible change. Melissa Jolley, (Women’s Health Project Officer from Women with Disabilities Victoria - WDV) pointed out from her own lived experience that there is so much pressure on self-advocates to self-advocate and that a greater ‘push to power’ is needed for professionals to carry that burden. Kate Taylor (Innovation Lead at Melba) echoed this sentiment, that PWID and their support systems often don’t want this additional pressure and that paid professionals should offer the solutions rather than the problems.
Avoiding this requires genuine, paid opportunities for PWID to work in the sector, with their expertise valued on par with other professionals—social workers, project coordinators, doctors, and so on. I’ve made a conscious decision to pay PWID for their expertise where I can, whether through consultations (such as with the Gender and Disability Experts by Experience Advocacy Team at WDV) where I was struck by Gender and Disability Project Officer Tess Karambelas’ commitment to educating me on accessibility. Tess took time to ensure I was prepared for the consultation to discuss appropriate language, format, and approach. Being guided by an expert so early in my research was invaluable for understanding distinctions such as plain vs easy English, intellectual disability vs learning disability vs neurodivergence, and the importance of prioritising the term disability over difficulty to perpetuate disability pride (see video).
Learning so much about co-design has prompted deep reflection on my own work. I’m proud to be compensating PWID for their expertise and to be consulting with experts both one-to-one and in groups. However, I recognise that my project isn’t yet truly co-designed, and that it’s still shaped more by neurotypical professionals than experts-by-experience. I’m working to change this—by making more time for lived experience input, developing an accessible podcast series to platform these voices, and exploring ways to co-design the next stage of the project when I return to the UK which may include developing dual-read outputs alongside self-advocates and subject matter experts.
I admit, I feel slightly daunted by the work ahead—but I’ll take the parting advice of Cam from SARU: “Take your time, don’t rush, be patient.
Easy English: Learning About Co-Design
What I have been doing
I have spent the last few weeks learning from 10 organisations in Australia.
My Churchill Fellowship is about sex education for adults with intellectual disabilities.
Today, I am travelling back from a co-design session at Thorne Harbour Health.
I have been thinking about why co-design is so important — and how to make sure it is real and not tokenistic (not just for show).
What co-design really means
Co-design means working together from start to finish.
It is not just asking for feedback after something is already made.
It means:
Involving people with lived experience from the very beginning.
Valuing everyone’s ideas equally.
Making sure everything is accessible.
Being open to feedback and change.
Recognising our own bias (when we make unfair choices without meaning to).
People with intellectual disabilities are experts in their own lives.
They know best what helps them live, love, work and play in a world that often excludes them.
The saying “Nothing about us without us” reminds us that people with disabilities should help lead the work that affects them.
Learning from others
Cameron, a self-advocate from SARU, told me that the best thing about working there is that:
It is run by and for people with intellectual disabilities.
Half of the workers are people with intellectual disabilities.
Everyone is treated and paid equally.
Cameron is also part of Rainbow Rights, a self-advocacy group that:
Sets its own goals.
Runs its own projects.
Hires its own staff.
This means they are in charge of their own future.
Co-design from the ground up
Dr Amie O’Shea from Deakin University says co-design should start “from the ground up.”
That means:
People with intellectual disabilities help decide goals and priorities.
They help check materials for mistakes or confusing language.
They help translate jargon into plain or easy English.
Amie also said that being part of co-design needs lots of support, such as:
Helping with technology.
Reading out meeting notes.
Using plain or easy English.
Allowing time for emotional discussions.
Sending reminders and clear invites.
This behind-the-scenes work is just as important as the meetings themselves.
Accessible resources
Nathan Despott from Inclusion Melbourne uses something called a dual-read format.
This means:
One page is written for professionals.
The other page is written in easy English for people with intellectual disabilities.
This helps both groups learn together.
It also means information is not shared in a way that leaves anyone out.
Thorne Harbour Health also uses this format in their resources.
They take lots of time to discuss:
How to order information.
How to talk safely about sexuality and gender without using stereotypes.
Checking our own bias
As a neurotypical professional, I know I have unconscious bias — ideas I don’t always notice.
Good co-design means being open to feedback from people with lived experience, even when it feels uncomfortable.
Lud Allen, a sexologist, shared a story.
A participant once asked him, “Why does it always have to be two?” when he used examples like big/small or tall/short.
It made him realise he was thinking in binary ways, which can leave out people who don’t fit into two boxes.
People with disabilities often notice exclusion more quickly — and speak up when something feels unfair.
Mags, from Rainbow Rights, said that self-advocates often notice when others are being left out or rushed.
Learning and reflection
Courtney and Melanie from Rubix Support said their team does training with Relate’s Sexuality Attitude Reassessment Programme.
It helps people look at their own attitudes about sex and reflect on what they might need to change.
Respect and fair pay
Many people with disabilities are asked to share their expertise without being paid.
This can be exhausting.
Melissa Jolley from Women with Disabilities Victoria said that self-advocates often feel pressure to speak up all the time.
She said professionals should take more responsibility to make change happen.
Kate Taylor from Melba agreed — professionals should help solve problems, not just ask others to.
We can fix this by paying people with disabilities fairly for their work and expertise.
What I am doing next
In my project, I pay people with intellectual disabilities for their time and expertise.
I also meet with experts to learn how to make my work more accessible.
For example, Tess Karambelas from Women with Disabilities Victoria helped me plan a consultation that was accessible and inclusive.
Tess explained the difference between:
Plain English and Easy English.
Intellectual disability and learning disability.
Why we should say disability instead of difficulty, to promote disability pride.
Looking forward
I have learned a lot about co-design.
I know my project is not fully co-designed yet — but I want to change that.
Next, I want to:
Make more time for lived experience input.
Create an accessible podcast to share these voices.
Co-design new materials with self-advocates and experts.
It feels like a big challenge, but as Cam from SARU told me:
“Take your time. Don’t rush. Be patient.”
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