Punaoa, Tumama and the Beauty of Albinism

My name is Punaoa and I am a mother of 3, and wife to one-man haha! I’m a stay-at-home Mum who also runs a baking business from home to help provide for my family and my Dad who also lives with us. I was born in Australia, but my heritage is of Samoan decent. At the moment I’m passionate about supporting my family, my church community and in relation to this talanoa – ALBINISM. 

What is albinism? And more importantly, what does it mean to you? 

Albinism_TalanoaAlbinism is an inherited condition that can affect the colour of a person’s skin, hair and eyes. It is hereditary and is only passed on by those who are carriers of the ‘gene’.

But Albinism to me is just a lifestyle. My daughter was diagnosed at 7 months during a routine check up with the doctor and she noticed that Tumama had nystagmus, an eye condition where the eyes move side to side in a jerky manner. We have a special name for it – ‘dancing eyes’. When Tumama’s eyes start to shake I tell her that her eyes are dancing to which she giggles, closes her eyes and opens them again, and it’s gone. We have yearly check ups with eye specialists for them to see her to check if she needs a new prescription for her glasses, but other than that, life is pretty normal for our Blondie.

Albinism was a condition I knew nothing about and to be honest didn’t take much interest in, until we had our daughter. Only then did we see a whole new world – both good and unfortunately the bad side – for people who have this condition. I guess some people may classify albinism as a disability because of the associated visual impairments, but they are usually as healthy and normal as the rest of us.

What have been the most challenging experiences in your journey so far, especially as a Pacific Islander? 

tumama_father_talanoaAs a Pacific Islander, this experience has been confronting. When out in public we always receive a lot of stares, sometimes people gawking at us. In the beginning it was annoying, but now that Tumama is older we don’t even take much notice of it anymore. If people ask if she’s adopted or if she’s my daughter, I always make the time to stop and explain to them that she has albinism.

Albinism is one of the least understood conditions around the world, and its so disturbing to know that in this day and age, in places in and around Africa, cultural practices condone the ritualised violence against people with albinism and the hunting and murdering of innocent children. It’s true to say that whilst we enjoy the joy and freedom here in Australia, I often wonder how different our lives would be if we had lived in places such as that. It breaks my heart to know that something completely out of our control can bring such dark misconceptions.

What have been the most rewarding lessons?

The greatest blessing was having a daughter that has opened not only our hearts but also our eyes to the world around us. At first I was upset thinking about how much she would miss out with having a vision impairment but I later learned although she may not have the best of sight, she is a healthy strong little fighter who’s confidence and loud personality brings so much joy. There is nothing that can or will stop her, not if I’m her Mama!

What are the biggest misconceptions of albinism? How do you feel we can address them?

tumama_familyOne of the biggest misconceptions of albinism is that people with this condition are less intelligent. Albinism doesn’t have an impact on a person’s intelligence. Albinism merely affects the level of melanin in the body. It has nothing to do with the brain, and just like every other living human everyone has his or her own level of intelligence.

I find that people who aren’t affected by albinism don’t really have reasoning to want to understand the world of albinism. So its up to us – who have a loved one or knows someone close with albinism – to spread awareness, to always be open about albinism and not shy away from it. Awareness is the best way to address the unknown.

Aside from Tumama’s condition, would you say she’s similar to her siblings, or do you think it’s affected her personality, making her fiercer or shyer? 

She is like her siblings in so many ways but no I don’t think her condition has affected her personality. To us she is just as active, tough and as much of a little rat as any healthy 5-year-old haha! She’s definitely a force to be reckoned with which gives me comfort in knowing that although she will eventually be faced with the physical challenges of having albinism, she’ll be able to handle whatever’s thrown at her. She’s named after her late Nana, my Mum, an amazing woman of faith and strength, and so I know she’s got this.

What advice do you have for other mothers who are in your shoes? 

14463837_1433518443330891_1852014450_nKnowledge is power, but sometimes with more knowledge comes more pain. I won’t lie; I had to go through tears to get to where I am now. I truly believe that God doesn’t give us more than we can handle. Tumama has made me a better mother and a better person.

My advice for mothers like myself is to open your mind and embrace the amazing world of albinism. I’ll always be protective of Tumama at times even defensive too, but never ashamed! Don’t be discouraged and enjoy the journey Mums – the best is yet to come!

We’d like to thank Punaoa for sharing her, Tumama and their family’s story. We wish them all the best and hope to talanoa with them again in the future! To find out more about albinism in the Pacific, click here

talanoa

Arieta Tora Rika is a writer, Pacific storyteller, and Talanoa's Founder. With over 10 years of experience in social impact and non-profit communications across Australia and the Pacific, Arieta has dedicated her career to writing for positive change in vulnerable communities. She is currently a full-time Communications Manager for The Salvation Army Aged Care Plus, part-time student, and sometimes storyteller and cultural advisor for Talanoa.