The Journey

I realise I haven’t written here for quite some time. Life became busy – turbulent even – with health issues, advocacy (huge growth), work opportunities and challenges, and routine life things.

So this blog will be a reflection on this year. 

In February a close friend died suddenly. It was an event with drama as I had to go to the police station to fill in some ‘blanks’ for them, and then identify his body.  My friend had deeply challenged me, stretched me in my knowledge around the UNCRPD (United Nations Convention the Rights of Persons with Disabilities), encouraged me, and even at times upset me. The friendship we shared was genuine and deep and even today I miss his daily phone calls. It doesn’t take much to recall his face, his words, and the heartache of pain from loss. Even now, 9 months later, it can be hard to hold back tears. It has made me conscious of my mental health state which at times was quite fragile.

But I use this to remember why I do what I do. I’m in my advocacy work to make a difference for people like him. Those who have undiagnosed or hidden disabilities and for people like his disabled son who need access to services and supports.  The urgent need to have autistic ‘voices’ heard, to push back against marginalisation. 

When you are part of the disability community you realise that many of us die younger than those without disabilities – through poverty, through medical issues, through being more at risk of mental health issues. It is a sobering thought.  One that keeps me working hard while I still have the passion and ability.

One of the good things, that created opportunities, was a change of government. This provided me with several openings to contribute to a number of work streams that this new Government provided as a vehicle of change.

Seizing the opportunities presented has kept me busy – and being autistic I have had to manage my down times to ensure I rest enough so I don’t burn out, while managing my mental health. 

On top of this my partner in life had a series of health issues – totally out of his control. This saw several trips to A & E and several stays in hospital (usually a week or two at a time). It was stressful, tiring and involved lots of travelling to and from the hospital which is an hour away in good traffic or at least 1 1/2 hours away in heavy traffic. It created a huge amount of anxiety so again something to be managed when you are autistic.
I also masked a lot during this time – I needed to be strong and appear capable to advocate for my partner in a health system that isn’t always friendly to autistics or those using its services in order to prevent them dismissing me or my concerns. 

And then there were conflicts that arose in some of the work I do. They say autistics have social communication difficulties. It was ironic that the biggest communication difficulties I encountered over the last few months were not on my side. There were differences of opinions and instead of robust, respectful debate there was a shutting down and ranting (and not by me). It left me isolated, marginalised and feeling extremely vulnerable.  I questioned my continuing involvement but found enough support and respect to push back.  And it has led to positive (potential) changes in how some meetings I attend are to be conducted. Sometimes you have to keep going, keep up the fight – even though it is hard, even if the cost is high. We have to improve things for the next people to come along.

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