The work of thinkers like Dr. Joanna Grace helps us explore identity not as a fixed label, but as something multi-dimensional, evolving, and deeply connected to experience.
- Essentialist Identity: Our Inner, Unchanging Core
- Structured Identity: How Our Environment Shapes Us
- Performative Identity: Adapting to Social Expectations
- Discursive Identity: The Power of Language
Here’s how James and I encounter and navigate these layers of identity:
Essentialist Identity: Our Inner, Unchanging Core
For James and I, our inner light was once dimmed by my struggle to truly understand his being, beyond the challenges of special needs parenting. In the early days of diagnosis and therapy, James was reduced to behaviours and diagnostic labels, which overlooked his true self. Yet, our joy, curiosity, and resilience exist beyond these external interpretations, and I’ve come to appreciate our existence more deeply as we navigate this journey together.
Structured Identity: How Our Environment Shapes Us
James and I are navigating an evolving understanding of a world that sometimes makes us feel different, abnormal, and excluded. The spaces we occupy shape us not only physically, but emotionally and socially as well. Access to disabled toilets, for instance, is a lifesaver for me. It means I can accompany James, who is almost as tall as I am, into the bathroom without being viewed as a potential risk to other children, simply because of his appearance. The environment and acceptance we encounter are influenced by many societal forces: from media representation and public understanding to legislation. These forces intersect to shape children’s growth, behaviour, emotional well-being, and inclusion.
Performative Identity: Adapting to Social Expectations
Performative identity explores how we adjust our behaviour to meet social expectations. Most people intuitively know how to behave in different settings—quiet in a library, more expressive at a party. For neurodivergent individuals like James and me, this social choreography isn’t always natural. When James flaps his hands or withdraws in busy places, it’s not misbehaviour; it’s communication. It’s his adaptive response to environments that don’t always cater to his needs. His actions are his language. Teaching him how to navigate these social scripts takes time, patience, and creativity.
This aspect of performative identity reminds us that we all perform to some extent. We have many roles —businesswoman, mother, sister, teacher, advocate—and the extent to which these roles affect our true selves is significant. Self-worth becomes central to the process of performing, especially when we feel pressured to act in ways that are not inherently true to who we are. For neurodivergent individuals, the process of being taught social skills can sometimes lead to masking, which can result in intense trauma. In these cases, the script needs to be rewritten, allowing for more authentic expressions of self.
Discursive Identity: The Power of Language
Language shapes how we see ourselves and how others perceive us. Words like “disordered,” “special,” or even “different” can unintentionally marginalise neurodivergent individuals. When we reflect on the evolution of language—terms like “retarded” or “spastic” that were once commonplace—we see the damaging impact of these labels, even when they were used with good intentions. For me, the label became James’s identity, and I admit there was a time I lost sight of his true essence. The words we use don’t just describe reality; they shape it. This is why it’s so important to choose our language carefully, to affirm rather than diminish the identities of others.
Phenomenalism: The Embodied Self
For individuals who are non-verbal or express themselves differently, Phenomenalism affirms that their inner world is real and present. Their movements, expressions, rhythms, and reactions are meaningful. These should not be dismissed as mere behaviour, but recognised as communication.
Joanna encourages us to engage with others in ways by learning to listen more deeply to alternative ways of being. Joanna’s work helps us go further. She teaches us not to judge a person’s worth by their physical or verbal capabilities alone. She urges us to understand that identity is a synergy of mind and body.
Beyond Identity: The Evolving Nature of Self
For James and I, our identity is lived through rhythm, repetition, emotion, and connection in tandem. His body is his language, and his sensory world is central to how he experiences and communicates who he is. Through this lens, his being and belonging are deeply tied to his sensory experience. This is why we need more inclusive spaces that recognise and accommodate the diverse ways people experience the world.
We are individuals, but we are also mother and son, and together, we share an embodied identity—one where I am his voice, his gateway to the world.
When we acknowledge that our identity is not fixed but deeply rooted in the present moment, and shaped by lived experiences, we can imagine a world where the environment evolves to accommodate every person’s needs.
Reflections on the work of Joanna Grace and her discussions on identity, being and belonging
I am James' mum 