What working in the adult social support sector taught me about disability inclusion.
by Jill Spurr
For the past four and a half years, I’ve been head of communications in a charity that provides support for people with learning disabilities, autistic people and those with other support needs.
I knew nothing about the sector when I joined it, I just wanted a role where I could make a difference. What I wasn’t expecting was the difference the organisation – and the sector – has made to me. The different perspective it gave me. I am a better communications leader because I have worked with people with learning disabilities.
One of the biggest things I have learned about is inclusion. For clarity, I am talking just disability inclusion but bear in mind that it is and will always be intersectional, both for protected characteristics and other things that impact the balance of privilege, like socioeconomic background.
Two things have been my standout learnings about inclusion and representation. Firstly, that far too much of inclusion is about the external – largely unaffected – observer. Nothing drove that home more than writing about positive behaviour support and seeing the term “challenging behaviour”. Challenging behaviour, or what you might euphemistically recognise as “meltdown” is not challenging to the person who is presenting the behaviour. It is in fact an instinctive response to a challenging environment. Even the updated term, “behaviours of concern” doesn’t really accurately express what the person experiences, more what we see from the outside.
The other thing, sadly, is that much of what people do, even with the best intentions, doesn’t go far enough. There is a gaping chasm between doing enough to consider yourselves inclusive, your event or meeting accessible, and doing what it takes to ensure everyone, regardless of what their personal abilities and needs are, can be their best self and contribute with parity. So very often, people with the greatest support needs remain outside of any level of influence, even on matters that will directly affect them. It’s here that I must give a shout out to the fabulously talented Sarah Holmes, who has taught me so much about inclusion and representation, and lit a fire for co-production in me that won’t go out, because everyone has something to bring to the table.
When we know better, we do better, right? No one changed the world by staying silent, so I hope my observations help you reflect on what you do now and what you could do differently.
No one owes you a diagnosis
This has become a bit of a passion project for me, because it is multi-faceted, and central to authentic inclusion. We love a label, don’t we? Someone is autistic, has a learning disability, mental ill-health… As soon as you present a label, the external audience will view the story through their experience of that label, which invariably comes with assumptions about what someone can or cannot do, finds hard or finds easy – assumptions that are almost certainly wrong in context because terms like “learning disability” covers a whole wide range of stuff. Also minimising real disability for effect, like “oooh, those uneven blinds are triggering my OCD”. Don’t be that person.
And perhaps more pertinently, let me introduce you to the concept of the social model of disability. The social model moves the emphasis from personal difference to the inflexibility of our environments. It’s not being a wheelchair user that is disabling, it’s that the street and shop entrances aren’t built with wheeled users in mind.
Another huge problem is that the external observer doesn’t want to work hard to understand. There’s a baseline assumption that unless someone is visibly disabled, has a visual identifier like the sunflower lanyard or assistance dog, or you are told the person’s label (ie diagnosis), disability is not present.
That premise is statistically unlikely. There are 16 million disabled people in the UK (Scope figures). That’s one in five of us. So in any group of say, ten people, one or two of them are likely to have a disability or impairment of some kind. There’s probably someone else too who is an undiagnosed member of the neurodiverse community and someone else still who has lived experience of stress, anxiety and/or depression (Jill’s speculation).
Most disabilities have little or no external indication… and nobody owes you a diagnosis in order to be seen. This perspective is nuanced, because it is important for all manner of disability to be present and acknowledged – think Bridgerton cast with deafness, limb difference and wheelchair users in the ensemble cast. But assuming no one is disabled if it isn’t made easy for you is ableism born of a perception of “normal”, and lived experience for people with less visible disabilities, so it’s an area that really needs work. Realising that disability is more common than you may be aware of and that four in five people won’t fit your presumption of what disability looks like is a good start.
The curb effect – we all benefit
Do you use audiobooks, Velcro, an electric toothbrush? These are all adaptations to meet disabled people’s needs that have found their way into everyday life. As the saying goes, necessity is the mother of invention. Making adjustments benefits everyone.
The accommodations that make your event or environment more inclusive have a ripple effect for other people. That’s never more obvious than in the venues we use for events, workshops, training, education, meetings and seminars. Almost invariably, conference facilities are white rooms with bright lighting and limited visual interest, convenient and cost effective to build and maintain. I’m a massive fan of novel learning environments that stimulate your senses in a good way and promote curiosity – and curiosity stimulates creativity. Look for wildlife visitor centres, museums and National Trust venues – many have an interesting event or education room that can be hired at reasonable rates. Even a vintage village hall can be an interesting venue.
Don’t just take my word for it. When Professor Noel Fitzpatrick – he of the Supervet programme – wanted to create an environment for professional development lectures for the veterinary sector, he created an entire festival, complete with live music, daisy chains, chill out tent and amazing food.
There’s science that sits behind it too. We are best able to learn when we are at “baseline” – relaxed, happy and the limbic system busying itself with creating memories rather than firing off the fight or flight alert. Those harsh lights and loud noises can push anyone out of baseline, not just people with sensory processing issues or a tendency to migraines.
And you know, if the environment is neuroinclusive, the tranche of people who haven’t yet discovered they have ADHD or are autistic will also benefit. It’s become a bit of a political point score to trash on neurodiversity diagnoses. People who are all opinion and no knowledge take up valuable bandwidth claiming nonsense about it being too easy to get diagnosed as neurodivergent. The truth could not be more different, and sadly many people, young and old, get diagnosed well after damage has been done by an unyielding world.
At the very least, introduce fidget toys and doodling materials to your meetings. Fidgeting is a natural, subconscious behaviour, which gives sensory input. We have also learned that fidgeting helps you retain information (Farley, Risko & Kingstone, 2013). The small movements can trigger release of neurotransmitters called dopamine and norepinephrine, which in turn control where we focus. That’s true of all of us.
You wouldn’t use fidgets, no? Do you pop the bubble wrap, have palm stone crystals, knit, crochet, love the feel of your dog’s silky ears, build Legos or Meccano, colour, paint, click the end of your pen, wrap up in a blanket, watch ASMR videos… Go figure.
Meet people where they are
One thing I learned that has been really liberating is that you don’t always need to understand why something is important, you just need to respect that it is.
Now, of course, that’s not a universal rule. If someone has a level 6 diet and their food needs to be bite sized because of risk of choking, of course you need to understand that.
And it helps to hold the mirror up to people’s experiences, even when it makes us feel uncomfortable. Some people in supported living need to learn that it’s okay to make a hot drink any time they want one, because they have moved from an institutionalised environment where things happened at given times and only then.
But if you don’t understand why someone chooses to speak through a stuffie, that’s okay, because it’s not about you. Just make sure you include the stuffie in delegate lists and thank yous. And equally, if people don’t understand why something makes you feel safe or makes your heart sing – no matter! I totally get people don’t understand why I have six dogs… but I don’t need their approval to be happy.
Be curious, creative and playful
As adults, playing is almost always frowned upon, unless you are interacting with children, or the playing relates to a sport. But playing is nature’s learning mechanism: not just for learning about what life demands of us, but also to collaborate with others, self-regulate and process information, and develop creativity. These are things that many of us need to work at in adulthood.
Playing is a universal language, so introducing elements of play to conferences and workshops can make them more accessible to people who communicate in ways other than words. They can help people explore concepts they may not fully understand (and again, that’s not exclusive to people with accessibility needs).
Collaging, play figures, mood boards, modelling clay and drawing can all help people explore and express. Play is very much the concept behind the ‘twenty pieces of spaghetti and a marshmallow’ challenge, but we don’t have to be so limited in what we do. Get out the Fuzzy Felts and be different.
Prior Planning Prevents…
Whatever the gathering you are organising, think about who will be there, why you want them there, and what contribution you are looking for. How can you support them to make the most of their experience, which in turn will reduce any barriers to achieving your desired outcomes?
The easiest way to get things right is to ask people (or their support teams) what they need to be at their best. Normalise getting up and walking about if people need to, or incorporate optional activity into your session, like dancing, some stretches or a nature walk – keeping people sitting is about control, not contribution. Maslow’s Hierarchy – air, food, water and safety are the foundation of human growth and development, so they are the basic minimum for a productive gathering.
Because ultimately, what inclusion really means is people achieving their potential. Too often, we get caught up in the tactical delivery (which may or may not be wholly effective - there’s many an accessible loo that lacks a level of functionality) like disability is a problem to be solved. Change your perspective to ensuring that for the things you have control over, everyone – including you – has what they need for success, and we will start to move the dial towards genuine inclusion and authentic co-production.
References
Farley J, Risko EF and Kingstone A (2013) Everyday attention and lecture retention: the effects of time, fidgeting, and mind wandering. Front. Psychol. 4:619. doi: 10.3389/fpsyg.2013.00619
Maslow, AH (1943) A theory of human motivation. Psychological Review, 50(4), 370–396. https://doi.org/10.1037/h0054346
Jill Spurr is a values-led strategic communications leader
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