Being attacked for having a child with albinism

Since giving birth to my platinum-haired, blue-eyed son back in 2004, I’ve always been a proud supporter and advocate for albinism awareness.

My baby Gilbert - having a child with albinism - myhometruths.com

My beautiful boy as a baby in 2004

I started this blog to share my experiences in having a child with albinism and to help promote awareness. I regularly share articles on albinism on social media. I’ve spoken to others about being a parent of a child with albinism. I’ve supported other parents and I’ve set up a local support group for albinism families so we can keep in touch and be there for each other.

I’ve been open about the discrimination and persecution that people with albinism (PWA) are subjected to across the globe. I’ve tried to address the many myths surrounding the condition while also highlighting the unexpected challenges that come with having little to no pigmentation.

I’ve done my best to make people see that #albinismisjustacolour. I’ve tried to spread the message that PWA deserve the same dignity, respect and opportunities as any human being.

However, try as I might, I’ve been subjected to abuse and attack online for my support and promotion of albinism rights and awareness.

Being attacked for having a child with albinism - www.myhometruths.com

A few years ago I had to block a twitter user who decided to correct my views on this matter. They advocated for pre-natal testing and forced abortions for any child conceived with albinism. They saw me as a criminal for holding the genetic material responsible for my son’s condition. I’m sure they would have neutered me if they could.

Although I’m still puzzled as to why having albinism is so bad it should be bred out of existence…?

Then there’s been others, who want to engage in an evolution debate. They talk about the albinism gene being defective on one hand, or as a higher plane of evolution and a way to eliminate coloured pigment, on the other. Both are equally vile, hateful views.

I’ve also had the odd comment in real life, pretty much telling me I’m an irresponsible parent for choosing to bring up a child who looks so different. Because, it seems, looking different is a bad thing. And I’m a bad parent for forcing others to feel uncomfortable by making them look at my son who upsets them by having no pigment.

The most hurtful instance of this sort of attack occurred earlier this year, when I received a private Facebook message from someone I did not know. Purportedly someone with a disability themselves, they proceeded to attack me for condemning my son for life for giving him albinism. They also believe people, like me, should be jailed for giving children genetic conditions (especially if we know the risk beforehand).

The inference being, because my son is different, he will not live a satisfactory life. He will not find a life partner, he will be bullied, suffer mental health issues and suffer an unhappy and unfulfilled existence. And I’m culpable for making this possible.

As shared earlier, this is not the first time I’ve received communication from strangers in this vein.

This is the sort of thinking I’m doing my best to counter with my Facebook page and here on the blog. This is the stigma, the hatred, the mistrust and the discrimination that anyone with a perceived difference faces every single day.

This is what I want to change for my son.

My son, and everyone else born with a genetic difference, have the same right as anyone else to live a full, happy and purposeful life. No-one is less because of a condition. No-one should be defined by their diagnosis.

My son received a gene from both of us that means he did not develop pigmentation. Yes, that’s affected his vision, but, otherwise, where’s the problem? Why should someone who looks different, be condemned for life?

Honestly, why is his existence a problem to anyone at all?

Yes, I have an optimistic nature and yes, life will not be all roses for Gilbert, but it isn’t all roses for anyone. I believe we can do so much as parents to help prepare our kids for the best life possible. We can support them, prepare the way for them, build up their skills, teach them to advocate for their own needs and be there to give them the love and hugs they need.

I’m not naive. I have fears for my son’s future. But I choose to tackle them head on and do all I can to help him through them. I refuse to believe that he can’t do anything he wants to do. I refuse to accept that he deserves to be treated any differently because of the lottery of genetics.

I’m genuinely sorry for this person as clearly they have not had positive experiences as a person with disability.

I haven’t written this to attack them, I’ve shared this to illustrate why I’m here. I’m here to share the reality of having a child with albinism, the good and the bad. I’m here to address the myths, normalise the difference and try to make the world a better place for my child.

This is why we need to celebrate International Albinism Awareness Day. This is why we need to have the hard conversations, even when we don’t want to. This is why we need to continue to speak out and call out discrimination and prejudice.

Gilbert at Taronga Western Plains Zoo - www.myhometruths.com

Because every person has the right to live their life without fear of harm.

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19 Responses

  1. People can be so horrendous. You should be commended on not only being a great mum but a great advocate and helping to educate people about albinism. It baffles me that this condition is met by hatred- or any condition for that matter. That will only change through people like you and your son, showing the world that difference is nothing to fear.
    Amy @ HandbagMafia recently posted..Musings On My First Few Jobs

  2. Vanessa says:

    People do have such a fear of medical unknowns. I just don’t like it when their fear makes them think they can lash out – education is the best outcome and blogs such as yours are so valuable for that reason.
    Vanessa recently posted..My Tonsillectomy

    • Kirsty says:

      It is all about fear which is ironic as there’s nothing to fear in this case. Yet this ignorance breeds so much fear in those it’s targeted against. I really hope we can make a difference one day x

  3. I am absolutely distraught at reading this. Why do people feel it is their right to even have an opinion on this! I am finding it hard to find words, this must have been so distressing for you. I’m sorry people are so horrible, I promise we are not all like that. Thank you for sharing your story, maybe some of these uneducated baboons will take the time to read and stop and think first.
    Nicole @ The Builder’s Wife recently posted..Meeting With Your Builder – What To Expect

  4. Denyse says:

    Oh my goodness there are some ignorant and intolerant people “out there”. I am sadddened to read that you have been criticised and attacked by the “keyboard warriors”. What I see & read is a loving family where each child’s needs is being understood and met within the most accomodating of circumstances . Boo to the naysayers and onward, Kirsty! Your son’s words & views on BTN show a highly intelligent and most amazing young man. Congratulations to you and his Dad!
    Denyse recently posted..For Courage. 2017.80.

  5. Honestly, I just do not get this attitude at all, I really don’t. And the idea that parents should be ashamed of themselves for allowing their child with a disability to live is absolutely abhorrent! My cousin J has Down Syndrome, and the pressure my cousin went through to terminate the pregnancy was disgusting, and I know she has been treated like she’s a terrible person for daring to bring him in to this world. Today J is the most gorgeous, thriving little 5 year old, with the best sense of humour, and the world is a better place for having him in it, just as it is for having Gilbert in it. I am so glad there are people like you out there fighting this prejudice & hate xx
    #teamIBOT
    Kylie Purtell recently posted..Long Weekends {and why I love them again} | Life

  6. Hugzilla says:

    I wish I could say I’m surprised but I’m just not surprised. Sigh. Screw the ignorant people and the haters, you are making a positive difference in this world.
    Hugzilla recently posted..And Then It Tried to KILL ME… Close Encounters With Australian Wildlife

  7. sammie says:

    Kirsty, you should not be attacked, you should be applauded. You are awesome at mumming, advocating and educating and you do it so generously too. I think it says more about the ignorance of your messagers than it does about the stirling work you do. You and Gilbert are doing amazing things and spreading a positive message through both your actions and words. The world needs more people like you! Keep on keeping on!
    sammie recently posted..5 Top Tips for Picking the Best Sunglasses

  8. Claire says:

    WHAT. I’m sorry, whaaaaaat?? Maybe I’m just naive but it never occurred to me that anyone could have such hateful opinions about albinism? I mean, I’m sorry, but seriously??? People actually think you’re ‘choosing’ to ‘condemn’… ?? ugh. He looks like a lovely, healthy, happy boy. It’s only really in that last picture I can even tell he looks a little different. And to me, honestly, that’s all albinism has ever been, looking a little different. I’m sure this is why i’m so shocked to see people have such strong views and that they could be so hateful. I will do my best to educate myself on the condition more, but I really don’t understand how people can attack strangers like this. You keep on raising awareness and educating people like me, and I hope you’ll get less and less comments from people like them. You’re doing a great job xx #coolmumclub

  9. The society is unbelievably harsh 🙁

  10. You do such a great job. I’m not sure that it is even worth engaging in debate with people who send you personal messages like that, though that is easier to say for someone not receiving them. People with albinism are beautiful and unique, but even if they weren’t, they would be no less of a person than anyone else. Our society has a looong way still to go on this, but people like you and Carly Findlay for instance are up there paving the way, and it is so important and so great that you are doing that. I could have long conversations with you about pre-natal testing for conditions of diversity, as it’s something that I have become pretty passionate about, though I am pro-choice generally, I don’t think there should be an option for choosing termination based purely on disabilities. I don’t want kids like mine and yours to not have a chance to exist based on their diversity, that is where intolerance begins.

  11. That is shocking. I’m so sorry you have had to deal with that, and more so your son. I can’t believe that people can be so small minded and uneducated in this day and age as to believe some of that nonsense. Never mind what they believe, the fact that they feel they have a right to confront and challenge you on your family and child is even worse! I am a huge advocate for non-judgmental parenting.
    Big hugs to you, your son and your whole family.
    #coolmumclub

  12. Lisa Hack says:

    The kid is beautiful, and I dont understand why people can be so cruel. And why always prey on the so called different? It should be a blessing to be different and not be the same as every other grey person in the crowd.
    Lisa Hack recently posted..Equifax Has Sold Private Data Including Salary Details of Millions of Employees To Other Companies

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