How Reframing Disability would have made things different for me

December 9, 2019
General
By Reframing Disability

On Thursday, 28th November 2019, Reframing Disability hosted a stakeholder launch at Parliament House. It was attended by over 50 people from the government, business, early childhood, disability and community sector and families. Below you can read the speech of Glenn Redmayne, Board Member of Reframing Disability.

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How Reframing Disability would have made things different for me

As a child growing up, and like many of my friends with disability, much was unknown. A lot was not spoken about. What was spoken was usually wrong, or at best questionable, when it came to disability, living with disability and what future was possible.

There was a strong, again unspoken force, which dictated you either ‘fitted in’ without asking or expecting any change, or you surrendered to being ‘special’ and removed from society, warehoused and protected, perhaps. So special, that any aspiration that lay outside of the system’s belief of what’s best for you, and appropriate, was foregone.

The reality to me is that while you may survive, you can’t thrive in either of those paradigms. It’s a lonely, sometimes damaging and unhealthy place to be left. It’s a waste, it’s unsustainable for yourself and it places great distress upon your immediate and sometimes extended family.

No one wins.

There’s also this sense of enduring crisis that’s strangely accepted, a focus on immediate needs and shortfalls—without any attention to what will tomorrow be like, and how we can make it a place we want to live in. Having a view about tomorrow can still be met with hostility, as if it was greedy, unappreciative.

And while there was a lot of opinion, oceans of opinion, no one seemed to be working from an informed position and working with you. No one seemed to look at and craft approaches learnt from those who had already undertaken the journey. You were always alone, always the first one. There was no sense that another was a short distance behind.

Those who went before were portrayed as mystical beings of unknown origin or whereabouts. In many ways, as an adult we became them. We became our own peers, teachers and mentors. Collectively, we built upon and changed the culture. Disability culture/s emerged and found an alternative, a map and a place where you could be yourself, proud of and confident in your uniqueness without surrendering your agency.

But still the learnings and strength were hard to share, because so much ‘practice’ kept people away from each other along that path.

I often hear the same conversations, questions, fears and anxieties that I heard as a child growing up. As a child, you look towards your parents for direction and a certainty that is otherwise missing. Too often that direction is tempered by the unknown, and by systems and beliefs that are not conscious of the long game. Advice, option, choice given to parents, to families who haven’t invested in that full journey, nor the key steps. What’s absent as a result is a vision of a clear, achievable, healthy and happy self-directed future, and citizenship.

It is sad and unfortunate that some of the most isolating times a child with disability experiences is within the family. Times you feel the least understood, least supported.

We don’t need to keep repeating this scenario. We don’t need to leave children or their families wallowing and adrift of knowledge, options and connection. Reframing Disability’s passion is to offer a compass, navigation tools and confidence to chart the course to where you want to be. For children and family to be central, effective and informed curators of their own lives. Meaningful, valued, full lives where ‘hope’ is more than a verb, it’s a shared invitation…a place on the map that offers a better future.

Reframing Disability’s place within the Disability Sector 

I have been thinking about where Reframing Disability, as a new organisation, sits in the sector. 

So for a moment, imagine the sector and disability organisations as a kind of family. Like me, I hope you can see Reframing Disability as part of that family, perhaps at a family gathering.

It’s a close relative at the dinner table, connected by experience and a shared understanding of the family history, even if it’s informed by other events—and sometimes by other quirky relatives and their stories.

At this table you’re close enough, and familiar enough, to not feel obliged to bring out the best silver. You know that respect is a given, trust is assured and unspoken. We are of common purpose, we can write the next chapter together.

The opportunity here, and it’s a powerful one, is to find common ground and work together. To embrace those who’ll benefit from the collective wisdom, share it to light that path and make it an easier one to travel.

What better place to launch Reframing Disability than Parliament House. We’d like to leave the final words to those best placed to talk about hopes and dreams. 

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