09 May 2016

When the media directs you not to google Ichthyosis - and how I'm changing that.

Content warning: this post contains screen shots featuring hate speech about Ichthyosis, and examples of ableist media representation of the condition.

Sometimes I torture myself by searching for Ichthyosis on Twitter. I want to know what people are saying about the skin condition that I have. I also don’t want to know.

The Ichthyosis Twitter stream goes like this: a few tweets from Ichthyosis support charities, some people say it’s an interesting condition (like we’re here for other’s entertainment!) and link to medical journals, there are usually tabloid news stories about people with the condition, and there are a few bloggers like me adding to the conversation.

But the majority of tweets about Ichthyosis make me despair. Lots of people tweet pictures of babies with the condition, reacting like the photos are a horror film. Many discourage the searching of Ichthyosis - especially Harlequin Ichthyosis.


Last month I did a quick Twitter search and came across a tweet responding to an article The Independent newspaper created.

I scrolled up to The Independent's tweet. They’d linked to their newspaper article titled ‘9 things you should never ever search on Google according to Reddit’. (Well, referring to Reddit as a reliable source says it all, really. You know my thoughts on Reddit. Don't even search for Ichthyosis on Reddit if you've got an ounce of empathy and decency.)

The things the article suggested you don't google included: Google (duh), your medical symptoms, your favourite food (spoiler: you'll get hungry. Big deal.) and your email address. Also on the list - Harlequin Ichthyosis.

"8. Harlequin ichthyosis

It's a severe genetic disease in which, at birth, a child's skin is encased in thick white plates of skin, separated by deep cracks.

This has many complications - because there are cracks in the skin the newborns are more susceptible to infection and constant care is required to protect and moisturise the skin.

The disease used to be considered fatal, but in 2011 theArchives of Dermatology concluded:

Harlequin ichthyosis should be regarded as a severe chronic disease that is not invariably fatal. With improved neonatal care and probably the early introduction of oral retinoids, the number of survivors is increasing."

While the content is factual, isn't derogatory and doesn't even suggest the appearance of Ichthyosis is grotesque, that it's included in this list says it all.

While someone told me The Independent is not a major paper, it describes itself as "Independent, international and intelligent news coverage, from breaking stories to agenda-setting campaigns and comment.". A quick scroll through shows me it’s no Daily Mail. There is the occasional click bait story, but its front page featured stories on UK and international politics, poor work conditions, terrorism, culture and lifestyle. It seems to have some brain.

Its online readership isn't huge, but it's in the thousands per month (about the same as my blog actually!).

This article was shared on Facebook 322 times, and received over 900 likes, and 16 retweets and 12 favourites on Twitter. In the scheme of things, those numbers aren't huge. But the media has an influence, and hundreds of people have read the article.

The Independent also has a code of conduct - this part is most relevant:


We do not set out to offend the general reader or viewer and you should always consider how people will respond to our material. That is not to say that we should necessarily shy away from publication simply for fear that it might provoke a negative reaction in some quarters. Insofar as broadcast material is concerned, the Ofcom Code makes clear that: "generally accepted standards must be applied to the contents of TV…services so as to provide protection for members of the public from…harmful or offensive material." It goes on: "Broadcasters must ensure that material which may cause offence is justified by context."

Perhaps it's a personal bias, but I strongly feel this article breached that code of conduct.

When the media creates fear around something – like we’ve seen with of the media’s hype around Islam, society doesn't actually stop to get to know these people who are marginalised and vilified.

The Independent has created fear around a medical condition, a visibly different appearance. This is bullying. Fear mongering. Hate speech. This is where it starts - the mainstream media, and of course, social media.

People’s impressions of disability come from the media – dangerous, tragedy, victims, pitiful, heroes, inspiration porn, overcoming. Sometimes I think the media representation of disability impacts society more than meeting actually disabled people in real life. They're seen shows like Embarrassing Bodies and Body Bizarre - which create awareness, but in a voyeuristic, sensationalist way - and think they've been fully educated. Next!

And this is why the disability community is constantly calling for better media representation of disability. Alice Wong writes:

"When you have non-disabled people pitching, writing and editing stories about disabled, you’re missing the lived experience that’s intimately tied to accurate depictions of disability. And it’s more than a matter of hiring more disabled people in media–there’s also a need for a culture shift to examine how ableism is entrenched in the media.

Poor media representation is why people are scared by visible difference and disability - because we are presented as grotesque. This is why people feel shameful about their appearance. This is why there’s such a stigma around looking different and having a disability. No one wants to own it, because we’re warned against googling it.

I wrote about someone being scared by my face last week. Articles like The Independent's exacerbate that fear. People are discouraged from googling Ichthyosis, so it must be grotesque, right.

A couple of weeks ago, I got thinking about why I post photos of myself and share my story. The fundamental reason hasn’t really changed since I first wrote about this. Control. Control of how my story is portrayed, control of how Ichthyosis is portrayed.

I am an online writer, focusing on Ichthyosis and what it’s like to look different so I can contribute to changing the media landscape around Ichthyosis and other visible differences. I hope to show the world that people with Ichthyosis like food, fashion, can write and think critically, have meaningful and loving relationships, endure ableism and discrimination. There are many, many others doing this through blogging and socials media too – Courtney and Brenna, DeDe and Evan, Mui, Fiqasani, Maria, Hunter, Brianna, Steph, Lucy, Gina, and many many more.

When people search for Ichthyosis online, they see the condition as medicalised, the portrayal of Ichthyosis as a horror story. They don't see our full lives, our smiles and the way we are affected by ableism and medical challenges. But we collectively have the power to change that.

Everytime I post a photo of me, or write a blog, it has the potential to be misused (it's happened before). But this content also has the opportunity to change the portrayal, contributing to the library of sensitive, non sensationalised, realistic stories about Ichthyosis.

I hashtag Ichthyosis on Instagram so people can see me leading a full, happy, loved life. They see me as a bride, as a fashionista, gazing at my husband, seeing a band, eating at a restaurant, travelling. I hope they see beauty, energy and laughter. I talk about Ichthyosis on Twitter and Facebook, because it's a part of my life, a part of my identity. And I blog about Ichthyosis so that when people Google the condition - out of fear, to ridicule, to seek information, because of genuine curiosity - they won't be shocked.

When I saw that article from The Independent, I was shocked and saddened. It's a reminder that the fight never ends. As Edward Kennedy said, "There’s work to be done. The work goes on, the cause endures, the hope still lives and the dreams shall never die."

But writing this, and thinking of all the positive content created by people affected by Ichthyosis, I realise we really can help outweigh this negative portrayal of our conditions. Disability and facial difference is too often used as a target in the mainstream and social media. It's time consumers started paying more attention to the actually disabled instead of taking cues on how to react to our appearances from those who are just out to ridicule us.

I - a person with actual ichthyosis - direct you not to listen to the media. Google ichthyosis. You'll find some amazing, beautiful, smart, articulate and strong people.






  1. Until i started reading your blog I didn't even know ichthyosis existed. I have also learned of other visible differences and disabilities I had never heard of before. I am sure though that there are still many more. You and others have raised the knowledge of this. We can now choose how we react. I hope most will learn and modify their behaviour but the bullies will always exist. The positive I see is that the more people know (evidenced by the fact that ichthyosis and not another condition was mentioned in this useless list) less will react adversely. I think you are succeeding but may be too close to the issue to actually see that.

  2. I liked what you said at the end about hash tagging ichthyosis on things like Instagram - I've wanted to do so for the same reason, so that others can see my son living a full life, yet I'm afraid that it could be used for bad as well. Also, since it isn't me, I'm not sure that i really have the right to do so. As he gets older i want to be more sensitive to what is ok for him, so I'm glad that you are doing so. Love your posts

    1. Thanks K. It's a great way to create a library of real people living with ichthyosis. And I love that you're thinking twice about sharing his story. Really appreciate your comment.

  3. I really can't believe anyone would be so stupid as to write hate speech about a medical condition. That is reflective of a certain level of intelligence nobody aspires to.

    1. Sadly hate speech about people's medical conditions is all too common.

  4. Cathy - I found your blog after a few clicks starting with the Blogging Anarchy group. I didn't know anything about this condition before. Your right that hate speech about people's medical condition is all too common. I don't think most of these people are evil - just ignorant, and perhaps never had to deal with their own medical condition or that of a loved one. They probably don't realize how insensitive they're being. The best way to address ignorance is to educate and it looks like that is what you are doing. Well done!

  5. I really admire how well you put things in your writing, no matter how many rude or ridiculous tweets or articles you find. I am not surprised by much anymore about how many people have diarrhea of the mouth 😂😳 seriously, some people do not think before they speak and to stoop so low as to comment about another persons appearance is outrageous. Awareness of Ichthyosis is much needed, but to do so, we need better literature and positive messages for others to see that we are just as capable and intelligent as the next person. (Maybe even more so than some). You are doing a great job in showing that by writing your blog! Keep it up!!

    1. Thank you. And exactly. We need to raise expectations from the beginning. When negativity about the condition comes from the support group, there's a problem.

  6. Oh god, how could that be listed like that! Would they really list other children with genetic differences? Why can't people just see that picture of the baby with HI and just have compassion that the baby may be uncomfortable and needing treatment after birth? Instead they see the baby as a monster of some kind. It's bizarre and reprehensible behaviour and unethical.


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