You know your body best do not let the ableist structures we have to navigate break you. Rest when you need too. Say no when you need to. Know your rights or find someone who does and don’t underestimate the power of a good support worker for your physical and mental well-being. I delayed employing someone for years because I thought I should be able to manage everything myself. That delay impacted on my work and health but now that I have navigated Access to Work, I wouldn’t be without one.
I think my novel CULL might have the longest legacy and impact in terms of bringing disability into literary fiction without the stereotypes and pathos that usually stain representation of disabled people in fiction. It was also key to my becoming a disabled activist and recognising the work that needed to be done when it comes to disabled peoples representation in all areas of life.
I am proud to have been and still be part of powerful university based research programmes exploring disability and community, in academia, in literature and, in the Sensing Climate project, in climate precarity and justice especially as disabled people are almost always most impacted by any crises i.e. drought, flooding, heatwaves, pandemics, war etc.
I think that being an openly disabled local councillor with a focus on transformational inclusion has helped my local town council to improve access and engage with their deaf and disabled community in many ways including supporting the Festival of Disability and Inclusion and the formation of Same Difference (Dd/DPO), creating easyread town strategies and surveys etc., to Makaton and deaf awareness training. I know that my continued work with the council will lead to more toolkits and support networks for other interested disabled communities and local councils around the country.
I have four key goals for the upcoming year/s
1. as an Engage Fellow I intend to explore how disabled-led creative public engagement at the intersection of disability, academia and local governance can pave the way to transformational inclusion. In this work I hope to create a unique new network of disabled creatives involved in public engagement and to facilitate a symposium in 2025 leading to a Manifesto for Transformational Inclusion for Wiltshire and the South West.
2. I am hoping to create an international network of pod-casters exploring disability, policy and climate precarity beginning with a collaboration between Zambia, South Africa, UK and USA,
3. I hope to support my local disabled community in anyway I can through my local council and by promoting and enabling our new Deaf and Disabled Peoples Organisation in Corsham called Same Difference.
4. Finally, I intend to just play, relax and create more- find time away from fighting and pushing and coaxing and all that stuff and instead make time to learn a new skill, maybe write another book, maybe even travel a bit more!
I am really bad at switching off but when I can I get to the gym to do some weight-training, agility and a little cardio. Sometimes I’ll just put music on and bop around the living room. I listen endlessly to podcasts and audio books and love watching films (I love anything scary) with audio description. I go for long country walks when I can and I like to cook for people. Recently made a Chocolate Guinness and Raspberry cake for my support worker that went down rather well!
This could be a very long list! But for the sake of the reader I will just infer the usual suspects i.e. drinking pina coladas and getting caught in the rain. My fabulous nephew and wonderful nieces bring me joy. My guide dog, Mitzie is the most joyful and loving being I have met. She has a support cat (I kid you not!) called Habibi who brings us both joy on occasion although in his catness he can be an utter bastard. I love being outdoors and away from cars and people and noise and the sound of fields full of skylarks and crickets makes me immensely happy. I find joy when I’m able to help people unlock their creativity and personal confidence in whatever form that takes. I find joy in community coming together to create positive change.
In my work I talk about transformational inclusion changing that never ending us and them to just us. Changing that old what can we do to help you? to the powerful what can we do to help and support each other?
Disabled people are the largest minority group (24% UK population) intersecting with almost all other groups in our community. There are disabled people in every school, business, academy, and local authority. Yet, and this is the challenge, we are also the most over-looked and under-represented group although we strive to engage, be adaptable and resourceful.
There are several drivers for this exclusion. Firstly, ongoing barriers to participation due to embedded ableism in our society. Deaf and Disabled people must often juggle and struggle with a plethora of other issues on top of a condition(s) simply to manage daily life. This can leave people too tired or disillusioned to participate in wider civics.
Secondly, benefit systems can be convoluted, demeaning and difficult to navigate. Access to employment and education are impacted and additional care costs punitive. Thirdly, town centres, made inaccessible by a lack of simple access requirements like accessible toilets, create a subtle apartheid signalling that Disabled people are not welcome.
Unchallenged ableism is problematic for all, creating power imbalances that discourage many in our communities from active participation, especially our Disabled people who are most at risk of marginalization and yet also most affected by legislation and policies. UK businesses and high streets lose an estimated £2billion a month by ignoring the purple pound. If these exclusionary practices are perpetrated every level, they result in the skill and capacity of disabled people as agents of change being wasted.
