Why my voice as a parent of child with a disability matters

By Kelly Wilton

There is something we need to talk about and it’s been weighing on my mind for quite some time.

During these COVID times, the message I’ve heard repeatedly is that ‘we are all in this together’. It’s a constant reminder that if we do not behave as if we are all in this together, then we will never arrive at the next chapter; we will forever be going around in circles.

This message has made me think about the disability community and what ‘in this together’ means for us – not particularly related to COVID but in a much broader context.

I don’t know if it’s just me, but I feel that sometimes special needs parents are not allowed to voice particular opinions for fear of being criticised as negative; that we’re not allowed to share things that are regularly part of our world; things like grief, heartbreak and shock. 

Telling a parent who expresses what they feel that they are ‘wrong’ to feel that way sends a message that voices for diversity can only be heard if you have a particular opinion or a particular lived experience. But isn’t what we experience as parents just as valid? All voices within the disability community need to be heard so we can give a strong united front that we all deserve better – our children (the people PWD) AND their parents and carers.

And if we don’t allow parents to tell their version of their family’s story – which then becomes the first chapter of their child’s story – how are we ever supposed to move forward, if we suppress the very FIRST advocate in our children’s lives? 

Some voices say there are more than enough parental voices in the space of disability advocacy. But, I would disagree. I believe we need more.  We need more to show the strength and solidarity of EVERYONE’S lived experience and the support that is gained when we hold each other up.  The end game is that our kids see what we are doing, so that one day they too can advocate for themselves and live in a community that they are proud of.

Isn’t that what we are all striving for? 

Sharing our stories brings us together, growing our diversity so that we are stronger in fighting the adversity. If that’s too sentimental for you, check out how many businesses, advocacy groups, and other organisations are set up by parents to support other parents so they can fully support their child. All of these organisations were born because of a dire lack of supports out there.

In a time where the world is collectively off kilter, now is not the time for shaming people into keeping silent.

If we want to empower our children, we must first empower ourselves. Do not forget, with sick parents you will undoubtedly have sick children.   In all walks of life, in all communities. 

Supporting the mental health of parents, and of carers, goes hand in hand with our children’s bright futures. Let’s remember that one does not exist without the other; being able to speak out, and being heard is where it all starts.

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