Friday 30 November 2018

Our family response to the ignorance and hate.

“She’d be better off dead.” “She should’ve been aborted.” “She’ll have to be sterilized.”

Why do people think Tina and I, or any parent, have ever wanted to be told this?

The Social Welfare Department told Tina and me a doctor had to sign-off on our ability to cope psychologically with Mui’s expected death in infancy before adoption could be considered.

But no one taught us how to cope when Mui survived.

One qualified psychologist had Mui shout: ‘1, 2, 3… be happy.’ Stupid. So Tina and I had to figure out how to support Mui ourselves.

There are no days off. Ignorance is confronted daily. Kids with special needs don’t raise themselves. It takes commitment, resilience and hard work and still does. We’ve chosen to do that with a smile even if a smile is sometimes just the best mask to get you through the day. So even though Mui was abandoned and hidden because of her appearance, she’s grown up smiling too!

But the ignorance continues… and “just ignore it” doesn’t work. You confront it, deal with it and move forward. That’s why we’ve shared our family story.

MUI says:

“I am an avid user of Instagram and I use it to share bits about my life. I don’t feel like I am a spokesperson for Ichthyosis particularly but I also like to try and educate if I can but I don’t force people to think a certain way.

This week, someone posted a comment under a photo of a baby with HI side by side with me (see above). They wrote: “should have aborted that thing Jesus Christ.” I wrote underneath, “thanks for saying that. Makes me feel fantastic about being wanted in the world”.

I have no doubt that if my birth parents found it about my HI early enough, they would have terminated the pregnancy.

I was adopted and I’m glad my parents gave me a chance in life when everyone else walked away.

The fact that Instagram person wrote this comment felt like a slap in the face because I still get affected by comments like this. It’s hurtful. This user doesn’t know me. And I don’t know them.

What she didn’t realise was that her comment kind of hit a chord with me. Words can be incredibly powerful. They stayed with me for much of the day. She will forget about what she wrote. I won’t do so as easily.”