Hi,

The May 2013 issue of Money magazine has an article by Jeff Howe (twitter @crowdsourcing, his writings are easily googleable) titled Paying for Finn.  The article gives a stark picture of the financial issues an upper middle class family faces to effectively care for their son who experiences autism. Whether you think you’ll like the article or not, I encourage you to read the whole thing before reading this rest of this entry.

Negative Response?
My response exists because I was utterly shocked at the level of anger aimed at the author in some social media and blogs.  I don’t want to quote too many of the angry notes, but here is a short selection.

  • “The way this is written  makes it sound like Finn’s disability is an inconvenience to his family.” From the Ollibean.com blog (Ed. 20-May-2013 article seems to have been retracted)
  • “When people speak this way about their children, and in a public forum, it makes me wonder why social services, child protective services or whatever agency is responsibly for child safety, are not monitoring these families to ensure the children are safe from being murdered by their parents.” From a Facebook comment on the Ollibean.com blog
  • “I am quite disgusted with the fact that this man has such anger and resentment towards his son. … Grow up and stop whining.” From a Facebook comment on the Ollibean.com blog
  • “The parent in the article is clearly disgusted by his son and does not even consider his child human!” From a Facebook comment on Karla’s ASD Facebook page (April 23, 2013 post)

I think I understand some critics’ perpectives, though I don’t agree
If I can summarize some of the responses I read, the critics are essentially saying that this father is seriously stressed out, blaming his son for the travails of his family life, and a seriously spoiled upper-middle-income man. I think some more savvy commenters are saying that perhaps Money/CNN editors were editing the piece to be a bit sensational.  (I’ll grant them partial credit on that one.)  Some commenters saw Jeff as wanting to “fix” his son. And while I am sure that some commenters did, it is clear to me that many didn’t read the whole article.  And I think that many critics missed the bigger thesis or at least the larger opportunity this article presented to the general (non-parents of kids with disabilities) population.

With that said, here’s my defense of Finn’s dad, Jeff Howe.

This was a Money magazine article – so the article was about money
This article was not in Physical Therapist Monthly or Autism Daily or a psychology or sociology journal or even in a general newspaper.  It is a magazine about money and a magazine for the most part targeted at middle to upper class people!  So, Jeff’s article was about money.

I understand that there could be jealousy at play. Jeff does do well compared to most Americans.  But regardless of income, if you look at the multiplier needed to raise a child with intense special needs without any outside assistance, even someone with a $100K+ salary could go bankrupt very fast. In my personal case, in the first few years of my son’s life, I spent over $30K per year above and beyond any school or external assistance to keep him safe and included and on the path to thriving.  (Those personal funds are long gone.)

And now, since my son is in a specialized school, should those local, state, and federal supports for that school disappear, his annual school and services bill would be over 3 times my last full-time pre-tax salary.  Not what would be left over after I paid other family expenses, but rather at least 3x my entire pre-tax income!

Maybe Jeff didn’t say it well, but one thing that the general public (not parents of children with disabilities) need to know is that “personal responsibility” is great – but when your child’s minimal needs are 1.5x to 10x or more than your complete family pre-tax income, there is a problem.  And this multiplier is in play whether you make $25K per year or $100k or more!

Jeff loves his child, did you read the whole article?
Here are few things Jeff said in the article.  I am not sure how anyone read the entire article came away thinking he thought his kid was a monster. (Again, I acknowledge some concerns about word choice, but not the thesis that Jeff is evil.)

  • “Despite it all–the broken glass, the tantrums, the bitemarks, the feces Pollacked across his bedroom wall–I quite love my sweet, strange boy.”

I am sorry, but that is a beautiful sentence.  It tells a general population the true horrors of a tantrum and that there is intense love there despite them.  I hear the criticism – that autism (and additional challenges many of us know well) aren’t all about tantrums.  But this is Jeff’s authentic experience to date of his son.  And there is intense love there despite it!  Let’s give Jeff props for his point in his family’s journey.

  • “There were other concerns. His eyes were deeply crossed and his legs hung funny. He lacked muscle tone.  The issues were ‘global. ‘ Later that afternoon we went to our local coffee shop to talk.  Alysia [his wife] cried.  I didn’t.”

I promised myself I wouldn’t talk about gender for this article, but that one needs to be addressed.  Not about money between moms and dads.  Not about how day to day issues are split.  That sentence sums it up and hones in on my empathy for Jeff.  It is hard for a dad to cry and mourn when you are learning about your child’s challenges.  You don’t feel like you should.  So you don’t.  Especially in public. Except for when you do.  This theme, this simple sentence is something I want to explore with other dads as one the the themes of my upcoming book. (Caveat:  I fully realize that some moms don’t cry and some dads are like waterfountains.)

  • “We’ve reached the point where our house, basically, is Finn’s trust fund, meaning we’ll be able to apply the proceeds from the sale of that to his care. That, of course, assumes that we won’t still need a big house to take care of him as an adult and that we can make enough money by downscaling to make a dent.”

Some of the critics callously say that if Jeff thinks Finn is too hard to take care of, he should give him up.  One even said we need to check up on people like Jeff to make sure they don’t murder their children!  What I see is a dad struggling to make the best decisions he can. These decisions include  the one biggie we all, as parents of kids with severe disabilities, make.  How much of a sacrifice must and will we make to our own old age, our own marriages, our own lives in order to ensure our children are comfortable for their whole lives.

He’s trying to show people (people who are NOT us in the community of parents of kids with disabilities) a bit of our reality.  If he, and the editors, had to use a bit of politically incorrect language or dire language to paint that picture, please forgive them as their goal was laudable. Jeff has as much love for his child as any of us do.

Jeff’s “Alien” metaphor in the introductory paragraphs
Some of the criticism, and I suspect readership dropoff, occurred in the first three paragraphs.  Jeff used a metaphor of his son as an ET on a baffling planet.  It didn’t really bother me, because I knew what he meant and what his intentions are.  Perhaps you’ve read the piece Welcome to Holland? Well, I personally find that its simplified metaphor of traveling on vacation to the wrong place by accident minimizing to my family’s experiences.  However some people find that the Holland piece really useful.  And if it is useful to some families, then I am all for it! So I find it hard to understand why are some criticizing Jeff for using a different, but equally valid metaphor.

Jeff wants to effectively help his son.  The third paragraph in his article closes with him saying “The best we can do is help our alien child negotiate the baffling planet on which he’s found himself.” I can see how someone could be offended by this, but I’m not. I think it is kind of good writing to try and convey these feelings to the uninitiated.

Criticism of ROI (return on investment) on your children
Some critics honed in on the ROI word and paragraph. This is what Jeff said:

“Now we’re plagued by perpetual guilt that we could — should — do more for our son. But like a lot of families with a disabled child — even families like ours, with some means — we’re faced with a Sophie’s Choice: If we empty the bank for therapy for our disabled child, it necessarily means not spending as much on his ‘neurotypical’ older sister. It’s an awful thing to contemplate: No parents should be forced to compute the ROI on their kid.”

Some commenters said there was no financial impact at all on their families (God bless them!) Others said that Jeff was boiling his child down to a monetary value. Others even criticized Jeff’s spending on therapy as him trying to “fix” his son.  (I think that last opinion is an outlier even in the parents of kids with disabilities community.)

Jeff is saying that no parent should have to contemplate funds for one child versus another.  He talks about it as a Sophie’s Choice.  Bottom line is that all families make decisions like this whether consciously or organically by just “letting them happen.”  I find it difficult to see how people have turned this into Jeff saying that a child has an ROI.  In fact, it is just the opposite – it is a Sophie’s Choice.

Getting the word out to general public, or talking to ourselves?
Ultimately, I think the criticism comes into play because many commenters on this article are steeped in the life and language and experience of parenting a child with disabilities.  That culture is great (I live it!  I get it! My peer parents are my heros and inspiration!) However, I think this article was written to a general population.

I think that it is important in any advocacy and education piece to meet the target audience where they live.  At the end of the day, I think it is important to get the word out about our challenges to the general population.  We would be better off to focus on the implications of Jeff’s thesis: “Look how hard it is for Jeff’s family financially, and they make really good money! Imagine what a single mom or dad that made $30K a year or is unemployed would have to do!”

Bottom line for me
Remember that the Money article was not written in or for a support group or a disabilities focused publication. Yes, some word choice or sentences probably could have been recast.  Yes, other parents, perhaps older ones with more experience or parents with fewer financial means or parents with a different cultural background would have approached the article differently.  Perhaps you’ll write one!  I would love to hear other detailed, authentic experiences about the money issue.

Submitted with warmth, respect, and admiration,

Gary

EDIT 15-May 1:40pmEST: For those of you visiting (thanks for stopping by!) there is a great public discussion going on about this topic on Jeff Howe’s Facebook page.  Use this link to get there.

 

 

15 Comments

  1. I did not read the underlying article. Only above. I think everybody is entitled to their opinions. At least there is openness. I prefer transparency. It sounds like a tough space to be in for Jeff and his family. Unfortunately there are millions and more in worse positions. Way worse. But yet it’s so similar for many. For some hard to fathom it seems. There are always solutions. One has to find them and never give up.

    Best,
    Wolfgang

  2. Very well said, Gary. Thank you for writing this. I had no idea that this backlash to Jeff’s article was even out there. It’s disappointing to hear how little some people are able to understand how tough it is to raise a child with severe special needs — rich or poor.

    • Thanks Wolfgang and Molly!

      There is a nice discussion going on in Jeff’s Facebook page. I believe it is a public discussion if you follow him on FB. Can’t quite figure out how to share the public URL to that discussion.

      For western society, who is so quick to discuss money (why do *I* care how much a movie made last week?) we certainly are remarkably reticent to talk about it when it really matters.

      – Gary

    • Yes. Right. Also challenging no matter poor or rich, healthy or not. Good news though there are always solutions. One just has to seek them.

  3. Thanks for this article. I don’t get these haters and I don’t want to. If someone has someone in his family who’s sick, there always be financially hard times. Okay not if you are a millionaire, but how many are? So haters/suckers, this family has hard times, but they love each other and their son lives with his parents! How many of you would give him to social services? Ask yourself. I’m sorry I’m broke, but if I could afford it, I would support them.

  4. “I would love to hear other detailed, authentic experiences about the money issue.”

    Me too. Precisely. And that’s the real problem. People who do not know us above are saying we are “haters” because it upsets us and our parents to see kids called by dehumanizing language, blamed for marriage problems, etc., just because they are Autistic. I read the article, and indeed wished the money aspect had been detailed and authentic and unmarred by this rhetoric.

    When you say we are ought to have read to the end of the article to have deciphered the true feelings of the writer, you are changing the subject. As for myself, I object to the harmful rhetoric, and wholeheartedly support the idea that families should be financially and otherwise supported in society to a much, much greater extent. I strongly believe it is neither necessary nor useful when “writing about money and autism” to gratuitously include such language and claims as were seen in the introductory material of this particular article.

    Ib Grace,
    Autistic, Friend to Parents
    A Thinker, Not a Hater

    • Correction: I did think the money aspect was detailed and authentic. I meant to say, I wish the money aspect had been detailed and authentic *alone* (because that would have been very useful).

      • Ib Grace,

        Thanks for dropping by. I left a longer response on Jeff’s FB page. I’ll leave only one point here (in addition to my gratitude to your thoughtful reply).

        I don’t think I was changing the subject when suggestion that some critics read the whole article. It is very to the point that if someone is to criticize an article, one should probably read the whole thing before responding. Clearly, some of the critics elsewhere were responding to out-of-context quotes or worse, responding to other critics comments as if they had read the original article.

        Such is the internet!

        – Gary

  5. Writing about money and autism doesn’t make you a monster. Writing about a 5-year old child as though he was a “monster” also does not make you a monster. It does make you insensitive, as various commenters on the original story have already explained. Writing about a child, *any* child, with respect, is a good thing. Writing about money does not give you carte blanche to say anything you want about other human beings. Because the article is *partly* about money does not trump all other concerns.

    • Paula, thanks for the comments. I am drinking in and being affected by the thoughtful comments here and elsewhere that try to educate and include. I am also being affected (sadly) by the ungracious and cruel comments (not yours, here, but you’ve seen them) about Jeff Howe. Ironically, those comments dehumanize Jeff and also push apart those who are natural allies with similar goals. Take care, and thanks again for dropping by. – Gary

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  7. Pingback: Aliens versus ‘Welcome to Holland’ – Metaphors and learning about how to write about disabilities | Dads of Disability

  8. Hi Gary- I want to first address the factual errors in Jeff’s piece. It is often quoted that having a disabled child in the family results in an extremely high divorce rate. Jeff notes this as well, but it is not true. The latest studies all conclude that there is no statistically significant difference in families with disabled children and those without. Other studies have found the same results for families with autistic children. Jeff’s use of this incorrect stereotype is simply bad journalism used, as you have noted about other aspects of the article, to sensationalize the piece.

    Yet sensationalizing does not occur without cost. It is used to bypass people’s reason and appeal to their emotional responses…something that autistic people and their families surely do not need any more of.

    Other examples, that I’m sure you’ve heard from elsewhere, include using “ROI” to not only discuss his children, but to discuss them *comparatively*. At a time when disabled adults, children and their families are struggling mightily to receive the same treatment as neurotypical people, e.g., lifesaving organ transplants, Jeff raises the issue in a manner that reinforces the horrid notion that some lives are worth more than others. We all know where this leads and it is not a terrible place for those who are not white, wealthy and neurotypical..

    Nonetheless, this is happening today, leading, as just one example, to disabled people who are fully qualified for organ transplants being denied such lifesaving treatment. To show how arbitrary and discriminatory this is, consider Lief O’Niel (https://www.facebook.com/LifeForLief) who was denied a transplant from several hospitals until, nearly dead, Stanford agreed to a transplant for him and began the process of reversing the damage done by the refusals of other hospitals to do the same.

    It is not in the best interest of disabled people for a parent to write an article using terms like ET, alien and ROI. As others have commented, if Jeff would have stuck to the financial aspects of his life with his children, his article would not have struck so many other parents- and autistics- as a real threat to their well-being and/or the well-being of their children.

    I do not know Jeff so I am not qualified to comment on whether he is a monster. However, parts of his piece are factually wrong, reinforce extremely harmful stereotypes and bring to the fore the issue of valuing one life above another. Monstrous miscarriages of justice have happened because of these issues, and Jeff has done the disability communities a grave disservice in raising them as legitimate.

    Rob Gross
    Parent of two adult autistic children

    • Rob,

      Thanks for the thoughtful and detailed reply. I’ve only two things to respond to.

      1. I am not sure why people respond to or “give a pass” to the metaphor in “Welcome to Holland” while attacking ones like “ET” and “alien.”

      2. Jeff has made some detailed comments and responses – and apologies and promises for future writings – on his Facebook page in the post about this topic. It is a public page, you can get to it from the link in my post. I hope you read through the (lengthy) replies he has posted.

      Best,

      Gary

  9. Gary- there is a huge difference to me between Jeff’s piece and Welcome to Holland. The Holland piece’s central tenet is:

    “It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.”

    Compare this imagery with “alien”, ROI,” E.T.” etc…there ‘s no comparison. Holland is different from Italy; not better, not worse, just different. Alien is a term almost universally used to denote the height of undesirability:

    – An outsider
    – A creature from outer space
    – An organism, especially a plant or animal, that occurs in or is naturalized in a region to which it is not native.

    The people who responded most vociferously to Jeff’s article include many autistics who, due to ignorance and prejudice, were one labeled in such pejorative terms themselves. When they, or many parents, see such terms used in 2013 it makes us extremely upset (it made me physically ill).

    There are an unlimited number of ways to discuss autism in a non-perjorative manner. That Jeff chose the words he used is his responsibility alone.

    I would be happy to read Jeff’s apologies. Can you plese provide me with a link to his Facebook account? There are a very (!) large number of Jeff Howes.

  10. Rob,

    Thanks for clarifying. (For what it is worth, I found Welcome to Holland upsetting too, but I do acknowledge your point and the deeper level of your disgust. I haven’t, and won’t use “alien” metaphors! Promise!)

    Regarding the link, sure thing Rob. Jeff Howe’s public Facebook discussion on this topic – the thread is LONG can be found here: https://www.facebook.com/jeff.howe2/posts/10151357893596504?comment_id=24449720&offset=0&total_comments=35&notif_t=share_reply

    Regards,

    Gary

  11. To Whom It May Concern,

    I think it’s fate or whatever you feel comfortable ‘labeling’ such outcome, current status, events in the past, free speech and interpretation thereof etc. So literally anybody, can say anything, anywhere in the world. And yet it may be totally understood differently by many. I think open dialogue always contributes to overall awareness. So from my humble pow this is a good thing. Best, Wolfgang