Author: Melo Kalemkeridis
As a parent of a child with a disability, I now realise the first thing that changed was me. It wasn’t a conscious change, but it was change and it was instantaneous.
On reflection, the dreams and hopes I held for my child were shifted to the side and replaced with thoughts of struggle and uncertainty and as a result, I have to accept that my own relationship with the concept of disability was not a positive one, and sadly, not uncommon either.
But then, one beautiful day, I met a group of people that saw disability differently, they talked of strengths, hope, dreaming big, and of possibilities. At first it was difficult to engage with that language again… yes, they were words we knew, but, they were words we had long stored away. And yet, as I listened and acknowledged that life is now different to how I imagined, and initially it was a struggle… I also came to realise we didn’t have to stay stuck in the struggle.
They talked about a life we hoped for our child, challenged us to challenge our current to write goals and then to break them down and focus on the steps to get there. And that was when I knew I must engage with change again… but this time, the change was not instantaneous, for I realised the first thing that needed to change was, again, me but I also came to discover I’d need help to stay true to the change that was truly needed.
Where a group of people helped me to see my daughter differently, I found that my own old thinking that I used to hold, would come back and pull me back, or I would be reminded in my interactions within my community of that old thinking, which would have me doubt my new thinking.
How sad that the biggest obstacle I had to overcome was actually me getting in the way of supporting my daughter in the way I should, in the way she deserved, and, it must be pointed out, was entitled to; not above anyone else, but like everyone else.
At times it would feel like I was taking one step forward and two steps back. Knowing I had to change, did not intersect with the doing required to change. And just as I have come to realise that the difference that makes the biggest difference in our children's development is me, a parent, I knew that when I came across the Keys to Citizenship that I had found what would help me lean into and not only finally fully embrace the importance of my role as a role model, but awaken me to parental agency (oh, and if you don’t know about agency, relax, you’re not alone).
I had discovered what I feel is a significant piece that brings everything together that not only provides a roadmap to guide us towards where we should all be as people, but as part of that roadmap, it provides a framework from which to understand where we have come from.
Never has the impact of connecting meaning to purpose been more powerful than when I discovered the Keys; it was more than an “ah-ha” moment.
It not only awakened me and my responsibility to my own child, but it was the moment I recognised the responsibility I had to all children who had challenges, and for that matter all parents that were stuck in the struggle.
I came to realise that I was living in a time that was better than any time before Victoria was born, that we were enjoying the fruits of the efforts of great people across decades. People that didn’t accept another’s definition of what is possible, they didn’t settle for an easy road and to allow others to determine, what, where and when for our children, they fought for what was right… for every child’s right… a right to an ordinary life.
I’m not going to unpack the Keys to Citizenship for you, that would deny you the joy of discovering them for yourself. For me, the Keys to Citizenship is a complete model, and yet, it is one that you have to engage with personally and revisit regularly, for as we grow, our needs change and grow too: after all, there is no one size fits all, for anyone, or anything.
The Keys not only brings everything together, but it does so in a way that doesn’t overwhelm, it breaks things down into sections so that you don’t have to worry about doing everything, but to know, you can be working on or focused in part of the everything. Taking things one step at a time.
Neil Armstrong many years ago uttered those famous words: “One small step for man, one big leap for mankind” which I have shamelessly taken and modified to act as a reminder of the power of moments, where little things turn into big things and now knowing that motivates me in how I support my daughter.
My quote reads:
“One small step in disability is one big leap in development.”
There is possibility in small steps, for us all, for our children, for parents and yes, even for communities.
The Keys to Citizenship can be the start of you making an even bigger difference in your child's life and being part of what in time will/should be a united global movement.
I invite you to click this link, or google for yourself the Keys to Citizenship and the work of Simon Duffy… and then I want you to ask yourself afterwards: what will you do now that you better understand?
Because what helped you survive up to this point will not be what will help you to flourish moving forward.
PS. And while you’re at the computer, familiarise yourself with parental agency. It starts with the power of one - make that your first step, connect with your own power, the power that was always yours as a parent, and if or when you’re uncertain, know that you have the Keys to guide you.
I hope to see you out there one day, exploring and discovering and if our paths cross do please say hello!
The publisher is Citizen Network Research. Reimagining Disability in Family Life © Melo Kalemkeridis 2022.