ABC’s Freak of the Week

Read this whole post before you click on the link at the end. And then think twice about clicking on the link.


It’s disgusting, disturbing, and I’m including it only to make a point about something I think is even more disgusting and disturbing.

No, I don’t think this baby is a freak. I think he has a horrifying condition that would put a literal saint in a difficult ethical position, much less ordinary human parents.

But week after week, ABC News goes out with cameras and reporters and finds horribly burned 3-legged dogs, children with ugly tumors, ordinary people suffering fantastically disturbing medical conditions.

And shoves them into the spotlight.

This week it’s a 2-year-old covered in sores, blind, and in ceaseless pain from a destructive genetic condition, splashed on’s landing page, with a picture and a tear-jerker headline: “Imagine Being Afraid to Hold Your Baby.”

Of course they pretend to be sympathetic. But this is the Freak Show of the digital age. It destroys the dignity of the victims AND the viewers. But ABC — and, yes, plenty of others — do it week after week after week.

I have an inner fantasy where a reporter and cameraman, lights and microphone in hand, knock on the door of the hapless parents of one such child. The parents answer the door and stand there only long enough to understand what the reporters are asking them to do. They then storm out of the house and begin to pummel them with fists and feet, shouting “Leave us alone, you vulture sons of bitches! Our baby is not some public spectacle!”

I can dream, can’t I?

And really … you know how you’ve clicked on stuff on the web that you later wished you hadn’t, because it was stuck in your memory forever? This may be one of those things:

Epidermolysis Bullosa: Worst Disease You Never Heard Of

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  • cholten99

    Welcome to America.

    In the past fools would pay
    to see the freaks of the day
    contradictions of the norm
    the bizarre, the wonderful and deformed
    no need for the tents
    and the cages now
    the world comes to my eyes
    in front of my TV circus
    a freak show in disguise

  • Ray Moscow

    Epidermolysis Bullosa: Worst Disease You Never Heard Of

    There’s a charity shop near our house that raises money for victims of this disease. But I had never heard of it before I visited that shop.

    I suppose the parents of this child hoped that some good might come from the story. But yeah, it does seem ghoulish to have their suffering paraded for our entertainment.

  • timberwoof

    Several years ago such a case occurred in the Netherlands. A baby had no skin and lived in horrible, horrible pain. All the adults involved decided the best thing to do was euthanasia. Even the prosecutor, who was apparently required to press charges, agreed. So murder charges were filed and, after a half-hour discussion with a judge, dropped.

    What [i]good[/i] would come of experiencing the world as hell?

    And fuck ABC for sensationalizing it. They and similar are dragging us back to the glorious days of the Roman Empire. Ugh.

  • Julie

    If you want to see a documentary about this condition that was made in a very thoughtful, if heartrending, manner then look for “The Boy Whose Skin Fell Off” on youtube. It’s presented by a man suffering from the condition and he tells the story of his life with this disease. The charity hoping to find a cure for this is called DebRA and from their newsletters I’ve received over the years it does appear as though there is a real chance a cure could be found for this in the not too distant future.

    I didn’t click on the link you gave because I hate sensationalised “news” reports, but maybe it’s not all bad because a few more people may donate money to the charity because of it.

    • Ray Moscow

      Yes, DeBRA runs the charity shop I mentioned. They seem to do some good work.

    • 24fps

      Hi – Yes, it’s a very well made doc, but I would urge you not to watch on YouTube. I am sure it’s available in a better quality format on a site where the filmmaker has licensed it and will actually get paid. I’m a documentary maker myself, and it’s really difficult to keep people from putting work that doesn’t belong to them up on a free site. Part of how filmmakers make their living is licensing projects they’ve made after the fact. Check Netflix or some such – digital distribution, the legit kind that doesn’t rob artists, is becoming more and more available. And the cost is minimal to the viewer.

      • No Light

        Actually Channel 4 (who are responsible for the documentary mentioned) have an official YouTube channel which hosts their content in HD, including that documentary. That’s the second arm of their dual digital distribution system (4oD being the other arm) The filmmakers are compensated by the channel responsible for originally airing the programme.

        Five have the same sort of arrangement, and the BBC make some content available too. Youtube is not only for unauthorised content. It may be restricted to UK viewers though, who don’t need to pay the likes of Netflix, because their tv license pays for it in advance.

  • F

    I can only hope that ABC accidentally raises awareness, although I think ABC does these “human interest stories” for the wrong reasons given their track record.

    I didn’t click on the link, but instead did a search. Good to see that the top several results were reputable rather than sensational sources. I then remembered I know someone who supposedly has one of the milder forms of this disease. I say “supposedly” because it was a diagnosis without any clinical testing, based only on symptoms. (White “chicken skin” bumps, tendency for skin to peel off, especially from surgical tape or being covered for extended periods, bad teeth and gums, skin easy to injure, splits when swelling is present, and probably other things.) This person is also highly sensitive to sunlight, so who knows what the condition(s) is (are). Medical professionals routinely throw their hands up in the air when dealing with her. She is a medical disaster area who can’t really get any sufficient help at all. The skin condition is the very least of her problems, barely even on her radar.

  • Natalie

    Hope lies in the fact that maybe sometimes the reporters do get pummeled and shamed away from the story. We just don’t ever hear those stories.

  • Gregory

    I am reminded of the Victorian era fad when ladies and gentlemen of quality would take tours of insane asylums so they could get their thrills while appearing to be sympathetic to the plight of those poor souls.

  • Larry Ayers

    The mass media these days reminds me of reading, back in the 1960s, and very shocked, a copy of the tabloid National Enquirer, while I was waiting in line to pay for a Marvel comic book. The tabloid had a photo of hogs eating a murdered man.

  • RowanVT

    I’ m sorry. I read a particular quote in the article that was a comment from someone on FB… “I have more faith and pray more”. This… this horrible disease, the excruciating condition that will likely have this poor child die an early death, makes you love God *more*?

    What a fucking sick thing to say.

    • RowanVT

      The ‘you’ of course being directed at that other anonymous individual.

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