Stephen Lee Hodgkins shares his disability journey – and the value of the social model in gaining self-respect


Dave Lupton aka Crippen interviews artist and writer Stephen Lee Hodgkins in the series of first-person accounts on how the social model understanding of disability changes lives.

Stephen’s early life as a disabled person was spent in a state of denial. Like many disabled people he spent a long time masking his neurodiversity, playing the clown, doing his best to please people. At school he found ways of excusing himself from ‘remedial’ lessons and even now still struggles to reveal certain things about himself in specific situations.

Not having any involvement with other disabled people during these early days Stephen didn’t have anyone to share insights with or to recognise that what he was experiencing was a form of discrimination. It was only when he came across the Social Model understanding of disability that things began to change for him.

A caricature of Stephen dressed as a clown, addressing a wheelchair-user with a pie in his face

Stephen Lee Hodgkins clown cartoon © Crippen

“I first came across the Social Model understanding of disability in my twenties. I worked as a cook for an agency and was one day sent to cover a shift in a large residential home for adults with learning difficulties. This then turned into a much longer job supporting some folk who had moved from long stay hospital to live independently. Through this I got involved in self advocacy and started to learn about the Social Model through Marie Bryant who was the manager at the Disability Advocacy Network in Tower Hamlets.

Marie really brought the Social Model concept to life for me, helping me to apply it to my own life. Sharing this understanding with other disabled people in a group setting also proved to be invaluable in terms of my own growth.

This understanding altered my life as a disabled person. It helped me to comprehend social injustice and the idea of how inclusion can be facilitated if we are minded to give it a go.

I felt a mixture of relief, and negotiation with a lot of preconceptions I realised I had about ‘bodies and minds’ and ‘human nature’ the way things should or shouldn’t be. It was easier at the time to think about how barriers apply to physical impairments, but I struggled with how this fits with ‘dyslexia, ADHD, dyspraxia’, pain etc.”

I thought a lot about my grandfather who had lived with Narcolepsy, a sleep impairment, for 20+ years.  I remember having a conversation about the Social Model understanding of disability with him, and how we struggled to understand the concept of barriers beyond physical.

He had been medically retired from work and had his driving licence revoked. However, we sought out a support group, run by people with narcolepsy, and went to a meeting where we heard about how an employee had persuaded their employer to put a couch in their office as a reasonable adjustment.  This made a lot of sense to both my grandad and I and paved the way to understand that ‘barriers’ and ‘enablers’ are often specific, practical and need applying in real time to the person, in a ‘person-centred’ way.  From this, I discovered adaptive technology, screen readers and speech to text, which changed a lot of things for me having always struggled to read and write.

Since working within the framework of the Social Model I find that I’m less judgmental (to myself and others), more fluid and flexible in how I understand challenges and opportunities and valuing of diverse and alternative ways of doing and being in the world. Its beauty is in how an individual applies it to their own life in a personal way.

I think the Social Model is an incredibly easy and accessible way of understanding how discrimination and oppression impacts on disabled people. I recognise that it can be more complicated to apply it to some impairment experiences, such as with pain for example. I understand that some people search for absolute truths and explanations, and the social model gets caught up in this. I feel its value is in the way it reveals social ‘barriers’ and ‘enablers’, and questions the exclusive ways of the world, and presents inclusive possibilities.

I also work with another disabled person and together we’ve developed our understanding of the social model and how this can be used as a tool for empowerment and positive self-worth. We hosted a number of events to celebrate disability pride for international day and disability history month.  My favourite was a cabaret called ‘Cockney Crip power’ with poetry, a short film called ‘Crip noir’ and some performance art from Alfredo in the draw that involved a disabled ‘Nosferatu’ character giving birth on stage to a live audience. Much fun.”

I also made a short film some time ago that asserts my experience, connected to Social Model ideas. Entitled Bodeelanwigch, the film explores the representation of dyslexia and related learning difficulties that challenge language and literacy norms. Presented as an audio-visual poem, the original text written by the disability activist and artist Simon Brisenden (published in ‘Poems for Perfect People’ in 1987) this piece reconsiders the themes in relation to notions of dyslexia and associated learning difficulties.

Drawing on personal experience, Bodeelanwigch alludes to Craig Collinson’s (2012) concept of ‘lexism’, which relocates the problem of dyslexia as not individually owned, but rather the consequence of expressing diverse reading, writing, speaking and hearing in relation to ‘literacy norms’. This considers how dyslexics defy language conventions and thus can facilitate alternative knowledge interpretations of the world.

Society’s emphasis on correct speech, writing and hearing ostracises those with diverse language use and is often overlooked, hidden, or dismissed as a valid ‘impairment’ for the policy context. The strict imposition of literacy norms in society, especially the education setting often work to make visible diverse language use as dysfunctional and requiring correction.  The consequences of which position them as outsiders and expose them to discrimination.  In turn this devalues the unique insight of diverse language users to be able to see beyond and rework oppressive conventions.

Bodeelanwigch is then a celebration of diverse language use and actively resists ‘literacy norms’ that work to make visible dyslexia and associated learning difficulties as dysfunctional, rather than valid realities.”

Bodeelanwigch was shown at the Shape Open ‘[In]visible’ exhibition in Jan 2015 at the Shape Gallery, Westfield Stratford, The Street, London, E20 1EJ. See –…[in]visible.aspx

Stephen is also participating in the Disability Arts Online (DAO) Crippen cartoon mentoring programme and produces artwork under the pen name of Baadmowfin.

Description of cartoon for those using screen reading software

A caricature of Stephen dressed as a clown with full clown make-up is standing alongside of a large white board. He has a pointer in his hand and is indicating the lettering printed upon it. The heading on the board says, ‘clown model of disability’ followed by ‘play the fool, claim the odd, divert attention and make people laugh’. A young wheelchair user is sat alongside of him. He has had a custard pie pushed into his face with the contents dripping down onto to his clothing. Stephen is saying: “And a custard pie in the face often helps!”