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