More than: a journey towards pride

Jodie Cowie

When I reflect on my life, I often think of all the boxes that I tick and the different categories I fit. I think about what pre-conceived ideas and judgements that people may assume prior to even meeting me. The thing is, people don’t fit into categories. Categories have been created to compartmentalise the human experience, and do not provide a complete and accurate understanding of what that person is and could be. Each of the boxes I tick collide together and form all the different parts of my identity; the parts I celebrate, the parts I am learning to love, and the parts that don’t fit neatly into any one-size-fits all explanation.

One of the many categories I tick is being a parent. It has been a journey for me to learn to celebrate this part of my identity, particularly how it has intersected with having an acquired brain injury and the ongoing impacts for not only me, but also those around me.

When I got tremendously sick in 2020 (thank you, meningitis), I had just moved out of the family home and was one week into being a single parent. I then ended up spending almost two months in hospital doing intensive rehabilitation multiple times a day. A major focus for me was to get as well as I could in order to have my kids back in my care. And I did. It was hard, particularly in the early days of my recovery as I was learning to manage the fatigue associated with the brain injury and navigate the daily tasks required, albeit with help. But like most things, I traversed these challenges and continue to do so, and have been able to reach out for supports as I’ve needed, which at times, has been another challenge, but more on that another time.

Recently, I have been increasingly interested in the idea of pushing for more in my life, and really wanting to develop a sense of pride in all parts of me, in particular, the parent with a disability part. This emerged through ongoing and enduring experiences of societal judgement and discriminatory attitudes that comes with people’s misunderstanding of brain injury and more broadly, disabilities. While this is not always overt, it is always felt, and is limiting regardless and is yet another hurdle to jump.

I started to equip myself with information and affirm my experiences, however, this brought about much disappointment. As I researched I discovered a vast majority of the articles continued to reinforce the rhetoric that DISABLED = LESS. This paradigm continued to reinforce the underlying notion that a disabled parent shouldn’t exist, and certainly not a single one. I felt deflated by the negative and stigmatised information available and the bigger issue of who should and who shouldn’t be a parent.

I felt indignant and motivated to be more and find out more. I didn’t feel like I fit into this narrative that said I couldn’t and shouldn’t parent. I kept researching and gratefully found others who are parenting with a disability, who celebrate this and have pride in the innovative, exceptionally creative, and resilient approaches to parenting and how their children are supported in their development. I found this through online forums, podcast, books and small lesser-known research papers certainly not prioritised in any Google searches. In one book, one author highlighted how amazing parents with disabilities are and have to be, if anything, through sheer necessity, and how they are able to overcome challenges and thrive in both their parenting role and other parts of their identities.

I felt affirmed by the words and stories I found that people had so generously shared. With these stories I felt pride in the way I tick both a parent AND disability box, and that these stories felt more aligned with what I thought of myself in the context of being a parent with a disability.

I’ll always feel that I am more than just a box, and that labelling people in an effort to understand them isn’t right.  I also feel hopeful because  the assumptions that people make and the negative narratives that exist about parents with disabilities don’t have to be mine. So, the next time I’m filling out a form and am ticking boxes, I can smile to myself with the knowledge of all it really means to me.

Leave a Reply

Your email address will not be published. Required fields are marked *