October 20, 2010 7:09 AM
Arthur Miller had a son with Down syndrome - part 2
Yesterday, in recognition of National Down Syndrome month, I reran the first part of this series. For the sake of clarity, I have linked this second part to the original 2007 comments:
Read Part One first.I had many more comments I wanted to make on this article, but I wanted to make sure you read it first because I so appreciated the skill with which the author took us on the journey and I wanted to leave you in her capable hands.
Holly, I agree with you that this is a sin I wouldn't/couldn't commit - but that's because I have become a believer and being a believer has made me a more authentic person. Miller's rejection of his son even while allowing himself to be put on a pedestal as some kind of great emphathiser /defender of those with lesser gifts - as in his appearance on behalf of the mentally-challenged convict - to me is just so emblematic of the left and their Do-As-I-Say-And-Not-As-I-Do political position.
I couldn't help but think of George Will, the brilliant conservative commentator who also has a son with Down syndrome and who brought him home and brought him up and discovered that a child doesn't have to be intellectually gifted to be gifted in ways that you want to share with the world.
It wasn't that I couldn't make the moral distinction to say this is a grievous sin. I could and it is. I just cried because my heart ached for the wrongness of the situation. I have spoken and written many times about the brave parents who refused the medical establishment's advice to "go home and try again" and who discovered that kids with Down syndrome had greater potential than anyone ever realized - all they needed was love to thrive and grow.
But the irony is that Miller should have been one of those people - one of those who thought outside the box, the nonconformist, the one who questioned authority, who thought for himself. How ironic, sad, and hypocritical to continue to live your live as though that was who you were when at the most crucial test you failed completely.
So my tears for Miller were only for the fact that he had missed perhaps the most glorious opportunity to allow himself to be changed and grow. I know that my own creativity was unleashed shortly after Jonny's birth. He was born in 1992, followed a year later by Madeleine. And then I began to write - even as we also began adopting more kids with Down syndrome.
My advice to writers is always not to cut yourself off from life to find yourself creatively, but to dive into it. I don't think it's an accident that Jesus picked up the dust from the ground and spit on it to make the blind man see. The willingness with which we embrace service to others some might deem lowly lights a fire within us that becomes a thing of beauty. Think of Henri Nouwen and his beautiful writing, who sacrificed high position within the church to become a pastor/shepherd for a community of developmentally challenged adults. Since then his writing has resonated even more.
Ted - I do not blame Inge at all. The article made it clear that she would not have chosen to institutionalize her son, but was bending to the will of Miller. I've seen this happen in the cases of the three children I've adopted - one parent willing to keep him, one not (and not always the father rejecting). The other parent goes along to save the marriage. that's just the way it is. Inge showed her devotion through her visits to Daniel. I don't for a moment think she approved of and condoned everything - I think she was just getting by with an extremely forceful personality.
I also think I answered your defense of Miller based on the fact of the negative advice prevalent about Down syndrome in those days. We all know that. But my point is that if Miller were the true brilliant outside-the-box thinker he was supposed to have been, he would have come to a different conclusion - like those couples from the heartland who did take their babies home and who proved what individuals with Down syndrome could do.
Our country is the best in the world for realizing and dealing with our mistakes. There is no better place for a person with disabilities to live (which is why we have one adopted child with Down syndrome from Taiwan - his parents could see he would experience a better life here). But we put the wrong people on pedestals - people like Arthur Miller who used his creativity to establish his elite credentials by telling us theatrically how messed up our lives were. While across America were nobodies in flyover country quietly making heroic decisions which would impact their families and their communities for good the rest of their days.
Holly, my tears weren't just sympathy for Miller, but just sadness at the human condition, at Miller's self-delusion and his missing what might have been the greatest opportunity of his life to expand and grow as a person, an artist and a mensch.
Related articles:
Down syndrome: There's a purpose
All MommyLife entries concerning Down syndrome
Photo album of my son Jonny - now 15
If you look at the photos of Jonny, you'll understand why someone with a person with Down syndrome in his or her life will bring a lot more to the reading of this article about Arthur Miler. It's important to remember that Daniel is the biggest part of this particular Arthur Miller piece - the heroism of who Daniel became in spite of the injustice committed against him. I thought the author did a very good job of weaving his life into the story - I would love to have seen some pictures of him because a picture says a thousand words and as you can see from Jonny's, the irrepressible joy is better captured by a camera than by words.
When the people who knew Daniel spoke of what a wonderful guy he was, I hope the readers of Vanity Fair could understand at some level what they were talking about, that they weren't just so disgusted by the whole idea of Down syndrome that they were sitting back in their expensive leather chairs going "hunh?"
And I was not surprised when the author mention Daniel Day-Lewis, the actor who married Daniel Miller's sister was appalled by Arthur Miller's casting him away. Remember, Daniel Day-Lewis had done a brilliant job in My Left Foot: the Story of Christy Brown showing the humanity of a person many would have cast away themselves. He had to know what a terrible and grievous sin this was.
Frankly, I was surprised that Vanity Fair pushed into this territory and that the reporter handled Daniel with such dignity and respect. I thank her for that. It provided a facet that made the piece shine like a perfectly cut jewel.
Let's not forget that at the center of this discussion are individual people - like the ones Miller purported to speak for when he was on a pedestal - who have the same need to be loved and are deserving of the same respect as even the most brilliant playwright on the planet.
My heart doesn't ache for Daniel. He's an overcomer. I would love to meet him some day!
Posted in Down syndrome, Liberal Hypocrisy, Pro-Life Issues | Permalink
Comments
It was such a wonderfully written piece. I'm going to email the author to let her know how well rounded her article was.
The phrase near the end of the article, " One wonders if, in his relationship with Daniel, Miller was sitting on his greatest unwritten play." resonated deeply with me. It was a statement I have been struggling to find for years. When describing what it is like to parent a child with Ds, it's hard to make people understand the core of what is happening within a family when a child with Ds arrives. To describe your life as having had its greatest story begin seems so fitting. We don't know exactly what is going to happen, but the poignancy of what does happen is compelling and rewarding.
The hypocrisy of Miller was, what appears to be, his greatest flaw. Like you mentioned Barbara, we have the luxury of reading the whole story in 15 minutes. During Miller's life I'm sure that it was a step by step tragedy that Miller admits when he states he would never have guessed that his son would turn out the way he did. He must have made choices and assumptions that were each, incrementally further away from the character everyone knew as Miller. Maybe Miller thought at some point that those steps had brought him to a place he could not return from.
If I were still in school this would be an excellent essay topic. Maybe I'll try to get my thoughts down on my dusty blog.
I suddenly feel like writing again. :)
Posted by: kelly | October 20, 2010 10:40 AM
I have no experience with Down syndrome -- but plenty of experience with Asperger's. My son is very active, persistant, creative, brilliant -- and chaotic, defiant, self-centered, and resistant to everything that's good for him. I love him dearly; I have a vision of the wonderful man he has the potential to grow into. But right now, the present day obscures that vision greatly. There are days when I lose the vision, battered by the third (or fifth) half-hour-long temper tantrum of the day, praying for my husband to get home before my son provokes me any further, praying for bedtime and an end to the chaos, praying, praying, praying, and reacting as best I can to each punch as it falls. Most days are not at all like this -- but some are. And the only thing that saves me, that pulls me back from the brink and helps me continue parenting this son whom I love so fiercely, is that by the grace of God, I get a chance to step back and recapture the vision.
If I did not have that vision, if I were walking this path without hope, I do not think I could walk it at all.
I used to be somewhat judgmental of those who institutionalized their kids. Not much -- I understood intellectually that they were complying with their doctors' recommendations, dealing with a society that would not have supported anything else, etc. -- but some. Now, there is no judgment here. I understand the pull, the enticement, of the easy path -- because sometimes, the hard path is SO much harder than anything I realized I was signing up for when I got married. I know now that this is the path I signed up for; I will follow it to the end; I have hope, and vision, and faith, and love for my child, and they all guide me down the path I know is best. But if I were lacking any of these things, or if someone were knocking on my door every day with pamphlets about an institution that would take care of all this for me, I do not know that I would have the strength to cling to the path I'm on now.
I weep for Arthur Miller and his wife, and for their son. I weep for all that they missed out on. But oh, do I ever understand how they could make the choice they made.
Posted by: Newt Sherwin | October 20, 2010 2:13 PM
Beautifully said, Newt.
(I visited Newt and her children at home in Chicago several years ago - it is a beautiful thing to meet someone you've known only online.) Is this your second child - the one with the curls? At least they were curls when I met him :)
One of my sons clearly has autism in addition to DS. another has some issues which are like Aspergers/bipolar/Tourettes. I know what you mean about feeling provoked. I have found music and soothing words to help a lot. Daniel gets fixated on things and doesn't handle transitions well. I've had to change a lot to accommodate his needs. And ultimately, I did resort to medication - a very teensy amount - 3/4 ml (less than 1/5 of a tsp) of Abilify before bedtime which seems to be enough to keep things somewhat manageable during the day. Newt, I swore I would never go the medication route, but when Daniel was 12 and lashing out and punching holes in the wall, we needed to try something different.
I also have a friend whose 5-year-old son has major issues and she put him on a gluten free diet and he is like a different person.
All by way of saying, don't give up. I've been in the dark spaces you are in. Just keep listening for the Holy Spirit to nudge you toward the next step.
I also want to tell you about my grandson, who as a preschooler had every symptom of Tourette's. I'm not exaggerating, as I saw his bizarre antisocial behavior. My daughter wept so many times facing the reality of his future. Today he is 14 and an extremely grounded, gifted and intelligent young man. He simply grew out of it. She had never sought a diagnosis and now is glad she waited it out.
All by way of saying that every case is individual. Just keep praying. I hope you go out and get some down time once in a while when your husband comes home. I'm not normally one to recommend that, but in your case it might be very refreshing just to spend some time alone.
love,
barbara
Posted by: Barbara | October 20, 2010 3:18 PM
Newt, you are very inspiring.
Posted by: Sue from Buffalo | October 20, 2010 5:19 PM
I am talking about my second, T, yes. And he still has the curls. :)
We are strongly considering getting some more evaluation done. We are willing to consider medication, but only if a specialist with Asperger's experience recommends it; we're also looking into what other therapy options are out there. I've been doing a lot of reading lately, which is giving us lots of ideas on things to try; of course, picking which thing to try first is always a challenge.
Thank you for your words of encouragement. Today is a pretty good day, but there's still lots of arguing with everything I ask him to do, which is exhausting. But at least we're seeing progress. When you met me, I'd just given birth to my third child, J, and after a year of teaching T how to respond when J fussed or cried, T could tell us how he should respond, and would respond appropriately when we pointed out that J was fussing, but he NEVER actually noticed on his own when J was fussing. Now, my #4 (R) is 8 months old, and T is recognizing on his own when she's fussing and responding appropriately (even if it is his rough-and-tumble big-boy play that made her fuss to begin with; we're working on that). So huge strides have been made, which helps me have hope for the future, too. :)
Posted by: Newt Sherwin | October 20, 2010 5:33 PM
I am just so astonished by Miller's rejection of the Daniel, especially when he had grown up with a DS cousin, and had a nephew with cerebral palsy. Certainly he knew they weren't monsters or burdens. Miller must not have been too in touch with his faith because from what I have read is that Jewish faith believe that special needs children are angels on Earth, and that only the most special are chosen by God to be their parents. I can not imagine the pain of placing a child in an institution. I only know if I had been in the same situation, as Inge, what I would have done. I mean she survived the Nazi's for Pete's sake-she certainly could have survived as a single mother with her children.
My sweet baby girl was born five months ago, with Spina Bifida and she is such a ray of sunshine. I just think of everything that the family lost out by not having Daniel in their lives. Tragic.
Posted by: Heather | October 21, 2010 1:47 AM
