Lamentable Disabilities
This summer an infamous POV story appeared in the Daily Mail where a mother of a middle aged man with Down’s Syndrome expressed her regret over not having an abortion. Her reasoning was relatively predictable. Persons with this condition have challenging and complicated lives. And that translates to their parents.
This woman’s experience is real. And the vast majority of people will never know what she went through. But before I try to parse out what is really going on here a few things must be made crystal clear. Just because not all of us can know what she experienced does not mean we cannot judge what she has said. The truth is that some of what she wrote is evil. Plainly and irrefutably evil. Not her feelings, feelings aren’t evil, but the immoral conclusions she came to based purely on those complicated feelings.
Unless the mother’s life is in jeopardy aborting a pregnancy is an immoral action. I will not waste space here defending that claim. But ultimately this mother advocated for murder, via mercy killing and euthanasia.
But her perspective is valuable precisely because it is uncomfortable and unique. Her feelings are justified and need to be expressed. That is hard for pro lifers to hear but we must hear it. Not because humans are precious snowflakes and every feeling everyone feels is justified all time. But because she is speaking a truth about the reality of Downs Syndrome. A truth that is unpleasant.
Pro life has become the place where many conservatives hang their good person hat and Down’s syndrome has become an extension of that virtue signal. We hang up our hat and then get divorced for the third or fourth time, look at pornography, gossip, compare Donald Trump to King David, or buy a Lexus with zero down and then tweet about the deficit. Being pro life does not make you a good person. Tweeting out every year on March 21 (annual Down’s Syndrome Day) that the Scandinavians are euthanizing preborn persons with Down’s Syndrome is no measure of virtue. We cannot afford to be so simple minded about things most of us do not understand.
The truth is persons with Down’s Syndrome are not special angels, they are human persons. Their identity should not be subsumed into a group larger or smaller than that. Made in God’s Image they are complicated and beautiful. But they are not always bundles of joy.
I can attest to how difficult it is to work with special needs persons. I have been working with them for over half a decade. Last year I retired from doing in home support for adults with special needs. But I still work with Special needs kids in a public school setting. I retired from supporting adults because I hated it. Not the people (well a few of the people) I supported but the work itself.
Working with persons who have disabilities is not easy. It takes special people to do this. Deeply patient and dangerously empathetic persons. You need to be able to enforce emotional and professional boundaries yet honestly and truly care. There must be a gentleness and mild enthusiasm exuded towards those you care for otherwise it doesn’t work.
That is not easy for anyone to do. It is emotionally draining. Assisting an adult with basic hygiene is exhausting. Some people love it, but I didn’t. I enjoyed the fun things. I enjoyed laughing with my clients and finding activities for them to do. I did not enjoy wiping butts and giving showers. I did not enjoy assisting with dinner when they didn’t want to eat and would communicate this by throwing things and trying to violently grab me.
Most of my most difficult clients did not have DS. The most difficult ones tended to have Cerebral Palsy. But Down’s Syndrome can be tragically pared with Autism, hyper sexuality, or any number of other complications. I have mostly seen this in the public schools. And it is not pretty. These persons were not giving TED Talks or doing advocacy on TV. They were complicated and needed lots of support. The stereotypical personality of someone with Down’s Syndrome does exist. But even those people can be difficult to care for. Just because they are sweet doesn’t mean they don’t require support.
I stayed with the adult services company for 4 years because one of my clients became one of my best friends. Lets call him Simeon. Simeon had Down’s Syndrome. He can’t drive. He’s never had a job. He was obsessed with a children’s tv show. He stole pens and note pads from the place he volunteered at. Occasionally he stole other things. But generally he had a good life. Not an adult’s life. Essentially the life of a large child who needed lots of care and attention.
I loved him like a brother. Sometimes I wish I still worked with him. I see him occasionally but its not the same. It’s hard for persons with disabilities to develop genuine friendships. Obviously the disability is a barrier in itself. But when given the chance many people see past this. The bigger barrier is that their lives are often scheduled. If they live on their own with support staff then the needs and schedules of the staff have to be taken into account. Their days are planned around ride services and community activities. If they live with family usually their family is the center of their social life. Either way what most of us would consider normal friendships rarely exist. So when I stopped working with Simeon there was a sense in which I stepped out of his life.
But the good memories are precious. I’ll never forget the night I showed him my favorite film: “Warrior” (2011). It’s an emotionally complicated story and I always sob uncontrollably for the last 2 or 3 minutes solid. We got to that part and I tried to muffle my blubbering so as not to disturb Simeon. But then I realized he was crying to. I’d never seen him cry because of a film before.
I thought maybe he had seen me crying and that’s what he was responding to. But he wasn’t paying attention to me at all. He was just responding to the powerful story. Then through his sobs he said: “that’s not how you treat your brothers. You are supposed to love your brothers. You are nice to them.” It was one of the most beautiful moments of my life.
Because if you’ve seen the film you know what he meant. If not I don’t want to ruin it but “Warrior” is essentially about the complicated relationship between two estranged brothers. And Simeon understood it. It moved him deeply. Because he’s a person. He’s not an angel. He’s not magical. Sometimes he was hard to deal with and sometimes he was a delight. But first and foremost he was human with everything that entails.
In the end I was simply able to walk away when I felt I couldn’t do the work anymore. The mother who regretted not aborting her son couldn’t walk away. This wasn’t about a friend or a job. This is about her son.
Her moral conclusions are wrong, but her feelings are real. Moral facts don’t care about our feelings, but our feelings don’t care about facts. And that is the essence of being human. The tension between perception and reality, between choice and desire.
Concerning my own painful experience with infertility I once wrote:
“choking back tears as I listen to one of the special-needs kids I work with talk about how their dad overdosed again, while all I can think is “I wish this was my child. I wish his awful parents were dead so I could adopt him.””
These emotions are ugly. Honesty about ugliness is a fearful thing to do. And this woman knows what she said was ugly. She writes:
“So difficult has it been that I can honestly say I wish he hadn’t been born. I know this will shock many: this is my son, whom I’ve loved, nurtured and defended for nearly half a century, but if I could go back in time, I would abort him in an instant.”
Her feelings aren’t the problem. The real problem is that we have no appropriate cultural language for ugly feelings. The Scriptures teach us that these feelings should be expressed through the language of lament.
When this woman says “I wish I had aborted my son” it needs to be heard as “I wish he had never been born.” And this is an echo of what Job said when confronted with the horrible suffering God allowed into his life:
“May the day I was born be wiped out. May the night be wiped away when people said, ‘A boy is born!’ May that day turn into darkness. May God in heaven not care about it. May no light shine on it. May gloom and total darkness take it back. May a cloud settle over it. May blackness cover it up. May deep darkness take over the night I was born. May it not be included among the days of the year. May it never appear in any of the months. May no children ever have been born on that night. May no shout of joy be heard in it. May people say evil things about that day…Why didn’t I die when I was born? Why didn’t I die as I came out of my mother’s body? Why was I placed on her knees? Why did her breasts give me milk? If all of that hadn’t happened, I would be lying down in peace. I’d be asleep and at rest in the grave.”
It’s not exactly the same thing. A pro life Libertarian might say that Job is advocating for suicide, not murder. But autonomy isn’t the issue. To God murder and suicide are the same. In fact G.K. Chesterton made a good case that suicide is actually far worse.
“Not only is suicide a sin, it is the sin. It is the ultimate and absolute evil, the refusal to take an interest in existence; the refusal to take the oath of loyalty to life. The man who kills a man, kills a man. The man who kills himself, kills all men; as far as he is concerned he wipes out the world. His act is worse (symbolically considered) than any rape or dynamite outrage. For it destroys all buildings: it insults all women. The thief is satisfied with diamonds; but the suicide is not: that is his crime. He cannot be bribed, even by the blazing stones of the Celestial City. The thief compliments the things he steals, if not the owner of them. But the suicide insults everything on earth by not stealing it. He defiles every flower by refusing to live for its sake. There is not a tiny creature in the cosmos at whom his death is not a sneer. When a man hangs himself on a tree, the leaves might fall off in anger and the birds fly away in fury: for each has received a personal affront. ”
So in some ways what Job says is worse. Consider the statement: “May no children ever have been born on that night.” He is cursing the day of his birth to the point where he wishes no child had been born on that day. It is dramatic and offensive to our modern ears. Job’s sorrow is scandalous.
Christians aren’t allowed to express grief like this anymore. It’s embarrassing. We’re supposed to say nice things about God. But the scriptures teach us to cry out in pain and not accept easy answers.
Sadly this lady has cried out, but not to God. And because of that the moral answers she’s found are far too easy. So judge her conclusions but listen to her grief. Grief is the primary language of the Psalms. Pain is the language Jesus spoke on the cross. Lament is the language Hagar spoke in the desert that led her into covenantal relationship with the God of Israel.
Hagar is particularly instructive for this woman’s situation. Her story is truly amazing and should be read and meditated on far more often than it is. She is used by Abraham and Sarah like a modern fertility technology in order to produce an heir. Then when she does have a son, Ishmael, Sarah becomes jealous and has her thrown out of the household. She then goes to the desert with her son to die and cries out to God in distress. And God hears her and saves her from her distress. From her womb He creates the Arab people. A great nation that lived in harmony for centuries with Israel and Israel’s God. A people that many Christians and Jews have forgotten are blood descendants of Abraham and part of his covenant by birthright and by faith if they believe.
The intimacy Hagar experiences with God is so deep that He gives her a rare privilege and distinction. Hagar, an unmarried woman in a patriarchal society, is allowed the opportunity to give God a name. And the name she gives is one of the most beautiful in all the scriptures. She calls him El Roi, the God who sees me.
The suffering of Hagar’s sons and daughters is invisible to many today. The Palestinian situation has not improved, mostly due to their leaders being unwilling to allow Israel to exist and fostering a refugee culture that produces terrorism. There is a Christian organization in Palestine very provocatively titled Christ at the Crossroads. They claim to want peace but their words and actions say the opposite. They want to blame Israel for their sorrows and they use an intersectional pastiche ideology formed from Marxist and anti colonial nonsense. While they claim to condemn violence they always wind up blaming Israel from everything. Instead of blaming they need to cry out to God in lament. They need to pattern themselves after Hagar. But tragically they have refused her inheritance.
At their last biannual conference one man even said that he did not want to be called a son of Ishmael, even though he is a descendant of Abraham’s first son. The human heart always gravitates towards what we think is better, instead of what we are. Embracing who and what we are, especially the things about ourselves that we hate, is hardest path to follow but in reality its the easiest path to finding God. Because God already knows and loves us in our ugliness. He doesn’t love the fake person we present to the world. He loves the broken child crying for its true Father. Those tears that so many of us try to stifle, those cries of lament that break out in the dark of the night when we think no one in the world can hear us, those are the things God values most about each and every one of us.
Hagar named God El Roi because He sees. And Ishmael means God hears. If we bring our laments to him he will not shame us, he will remove the false shame of pain and embrace us in our brokenness. He will see us and hear us in our distress.
