There’s a question that I ask myself often:

If you have a message to share, and a platform to share it, are you duty bound to speak up?

Is it selfish to remain quiet?

I ask this usually in relation to Special Needs.

Becoming a Special Needs parent is to step onto a rollercoaster without the opportunity to stand back and inspect its loops and twists before the ride. Whatever the journey has in store for you, it will be a surprise. Full of highs and lows, screams and laughter.

I’m 10 years in to this journey now and I wonder often if I should talk about the twists and turns more. There are obvious benefits – awareness, which is hugely important. How can there be understanding without awareness?

And, then of course, the chance that a person who has just stepped onto this rollercoaster might be comforted or informed. I’ve been that person who has sought out information and advice, and I’ve felt lonely on this road at many points.

My reluctance always comes down to the fact that this isn’t an abstract theory for me. I can’t – and wouldn’t want to – share textbook ideas. If I open up about this subject, I’m sharing my life. And, more importantly, my beautiful daughter’s life.

Is that fair?

Is it fair to talk?
Is it fair not to?

The debate has been ongoing within me for years, and yet I feel a pull lately towards these bigger ideas, bigger questions.

The idea of a Universal Basic Income, for example, which I’ve been researching with interest. Low wage earners will consider that question from the point of view of a person struggling to provide who may not have to endure that struggle if a basic income was introduced. I consider it from my own point of view – what a basic income would mean for my daughter, who may never be able to work and provide for herself.

This question of providing financially for a person who will (if things follow the natural path) outlive me by decades has weighed heavy on my mind for years. It’s at the root of most of the decisions I make. It’s the reason why I’ve usually done 3 hours of work before the regular work day starts at 9am. It’s the reason why a big chunk of my income each month goes on life insurance policies.

These are topics that aren’t easy to discuss in pleasant company, and yet I can’t be the only one considering them.

What good does my silence do?
Who does that help? Surely, nobody.

And so, I feel, I must speak.

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