Open Letter to Bill Davis of “Far from the Tree”

Update March 13, 2016: Bill has responded to the letter and clarified his statement. Read in the comment section for his point of view! Thanks Bill!

Dear Bill,

I recently saw your video on upworthy. In your video, you talk about the challenges of growing up with a severely autistic child, how you and your wife essentially founded a learning center, and never, never, never, never, ever gave up on your child Chris. I am sympathetic to your struggles, and I highly respect what you have done for your son and other members of the autistic community. That being said, I do not know a whole lot about the spectrum of autism, but I am happy to learn, on any given day. Unfortunately, you seem to not show the same courtesy to other conditions. Imagine my surprise when in your video you declare:

“Chris has had one of the worst diagnoses ever. Self- injurious, swollen intestines, poisons in his systems, neurological damage, mental retardation, severe autism, almost a Crohn’s Disease”. (0:22-0:32)

I have watched this video over and over, to double-check, to try to see if I am parsing your words the wrong way or whether I am misunderstanding. I even read the transcript.

Now, I am sitting here, and wonder what exactly do you think Crohn’s Disease is? Seriously, I want to know.

I can tell you what it is not.

Crohn’s is not self-injurious, unless you are trying to say “auto-immune” here. If that is what you are trying to say, never mind. “self-injury” however refers to the specific, conscious act of harming yourself. And I can assure you nobody with Crohn’s (or Colitis Ulcerosa for that matter) is harming him or herself as part of the disease.

Swollen intestines, sure, it CAN be part of the Crohn’s Disease symptoms, but you see, it’s a rather complex disease, and symptoms can be anything from mouth ulcers to eye infections, to joint pain.

Poisons in the system. I honestly have no idea what you are talking about here. Do you mean that content of the intestines has leaked into the rest of the belly? Perhaps? An overproduction of bile? Seriously, I don’t know. But in all the books I’ve read about IBD, in all the blogs I have read, in all the conversations that I have had with countless doctors, the phrase “poisons in the system”, did not occur. Not even once.

Let’s put the next three together: Neurological damage, mental retardation, severe autism”. What on earth makes you link this to Crohn’s Disease? I want to know. Can people with Crohn’s have autism? Yes, but they are not the same disease. Autism is not a symptom of Crohn’s. The same goes for mental retardation. Of course there are people out there suffering from both, but they are not the same disease.  But the way you have phrased it, it’s all part of the same package. Worse, it’s not even that. It’s ALMOST Crohn’s. So, your son had all of these symptoms, but at least he didn’t have Crohn’s, is what you’re saying here, because Crohn’s is all that and more.

So, pray tell, what, in your opinion, is Crohn’s disease? Actually, I don’t need your opinion, because having had the disease for 32 years, and having informed myself as much as humanely possible, I don’t need your opinion, I know the facts.

You know who never, never, never, never, ever gave up on me? My mother. My mother who was faced with exactly the same misconceptions like the ones you are spouting in your video. People asked her with pity in their voices, whether she thought I would make it through school. Who spoke slowly with me, because you would never know how much I understood. Or who thought I had eaten rotten food to get attention. Or who thought that it’s all a bacterial gut, and boom, with a little bit of yogurt and yeast, things are gonna be fine.

There are countless other moms out there, with kids that have crohn’s and colitis. There are millions of other IBD sufferers out there, who are fighting the stigma on a daily basis.

My husband says, I may have misunderstood. That there was a comma in the sentence- i.e. you are listing your son’s symptoms and then add “almost Crohn’s” to the list. I thought about that, but even that doesn’t make sense. You don’t have the disease “almost” either you have it or not.

Chances are your video will go viral. It’s on upworthy, the general feelgood website. It’s on Andrew Solomon’s website. I know, this tiny section is not the main point of the video, but your family’s triumph is. And it is amazing, laudable, fantastic what you have done for your son and others. But even if your sentence was just sloppily expressed, and bore no evil intention, it is still upsetting, to say the least. Imagine I made a video, in which I talked about a medical condition, and randomly threw in autism, or “almost autism”. Sounds familiar? Yes, because the autism community has experienced this countless of times. You should know better.

I am wishing you and your family all the best in your endeavors. I support your community. I wish I could say the same about you.

 

Respectfully,

 

Verena

 

Advertisements

4 responses to Open Letter to Bill Davis of “Far from the Tree”

  1. William Davis says:

    I just found this open letter addressed to me and I certainly respect your opinion. But I am not linking any of these symptoms to Grohns and I know that they are separate. I tried to convey that my son suffered very similar symptoms. So I apologize but don’t quite understand your anger. Thanks for sharing.

    Like

  2. vjhutter says:

    Dear Bill-

    first off let me thank you for your reply, it is more than I ever expected and I truly appreciate this.
    I also appreciate your clarification, yet I still think relating symptoms to another disease is doing a disservice to both your son’s (and by extension his family’s) struggles as well as the IBD community. I understand why people try to compare or relate different diseases/diagnoses to one another, you’re trying to communicate what you are dealing with to people who may not have the frame of reference needed. As in, “extreme stomach pains” doesn’t quite cover it for IBD, or saying “severe autism” may not really express your daily reality either. But when comparing symptoms, it’s super easy to conflate or confuse things, or people who listen to misunderstand. Of course you are not responsible for how people read or interpret your utterances, but in raising awareness, it’s so important to be precise. That being said, I reacted very emotionally, instead of calm, which does not help in what should be a conversation, my bad. I will update this post to reflect your reply, because again, I am grateful that you’ve been reaching out and joined the conversation.
    verena

    Like

  3. Lisa says:

    I don’t think he’s linking autism and Crohn’s. I think he’s saying his son also has severe GI issues,, “almost a Crohn’s disease”. It was one item in a list of his health issues. It’s actually very common for autism patients to have GI issues, and there seems to be a “brain-gut” connection in a large sub-set of people with autism. God bless you both.

    Like

    • vjhutter says:

      This is good to know Lisa! Thanks for your input, I really appreciate it.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s