The Value of an Autistic Life

The Value of an Autistic Life August 24, 2013

If there were a prize for the most egregious affronts to human dignity, the anonymous letter sent to the family of a 13-year-old autistic boy in Ontario last week would doubtless be a top contender.  The writer, who signed the letter “one pissed off mother”, did not stop at complaining very rudely about the boy’s presence in his grandmother’s neighborhood where he often spends his summer days, but went on to thoroughly disparage his overall worth, ultimately suggesting that the family “move or euthanize him”.  In short, the letter-writer emphatically takes the position that a child with low-functioning autism is a life not of value.

It’s easier for me to imagine this as some kind of cruel prank than to imagine that level of raw disdain being expressed so conscientiously – although, knowing how much ugliness the human soul is capable of harboring, the latter is all too possible – but either way, the letter has caused some very real devastation to the boy’s family.

Fortunately, the family’s neighbors have banded together to demonstrate that, contrary to the letter’s claim, he is indeed welcome and appreciated among them.  This story also prompted a broader outpouring of public sympathy, striking a particular chord with teachers and parents of children with disabilities.  Someone even sent Yahoo Canada News this truly amazing song by a French boy who also has autism (subtitled in French and English), which makes a poignant antidote to the letter’s poison.

My first and natural response to the story, like that of many others, was moral repugnancy, and indeed it would have been even more disturbing if there had not been such a response.  But I would like to take it a step beyond the exclamations of “what a horrible person” and suggest that, while few of us would stoop to such openly hateful remarks, they can give us all cause to reflect on our own attitudes.

We are rightly horrified when someone suggests that the life of a person with a disability is not worth living – but what about when the same thing is said of someone yet to be born?  Can we sense the same sting in such a claim when it is made before that person has been given the chance to be known and loved?

And even aside from that, how might we have conveyed in subtler ways that certain people are not wanted around us?  To shoot a family with a handicapped child a dirty look, for example, or to otherwise act put out by having to share space with someone we see as outside of the norm, is to send, more discreetly but just as surely, a similarly unwelcoming message.  And who of us can honestly claim never to have entertained a belittling thought about such a person?  I know I can’t, and that can only be to my shame.  I am therefore taking this story as a shocking reminder of the sometimes challenging extent of the truth I profess with such conviction: that every life is intrinsically of value, no matter what.

Correction: the boy in the video is Belgian, not French, and has a rare condition known as De Morsier’s Syndrome which includes some autism-like symptoms.

This post is my more substantial contribution to #LifeMatters blogfest, introduced in my previous post.

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  • David Cruz-Uribe, SFO

    Julia, thank you for this. My son and my family have been spared this sort of direct, venomous hate, but I have seen it lurking under the surface: when a relative complains that her school district is wasting money on “special needs” kids when it would be a much better investment to spend it on “gifted and talented” children (like her own offspring); when people get uncomfortable and change the subject when I criticize Jocelyn Elders for suggesting that abortion when the child has Down Syndrome is a good thing.

  • Excellent post, Julia, and food for thought for us all.

  • Jordan

    This is a beautiful response Julia. Thank you.

    My twin brother and I have had some challenges. He is developmentally disabled. I have social deficits. We are proof that lives lived on either extreme of the bell curve are often crosses to bear. B. would often run around shrieking in public, mumbling non-sensical syllables loudly. I would walk up to adults at barbeques and try to strike up conversations about Tiananmen Square or the fall of the Berlin Wall. I remember my parents pulling me aside once and ordering me to go and pretend to play with the kids. B. was left with Grandma or a caretaker. Eventually I went under house arrest as well because I had the gall to cease pretending that I was a child intellectually.

    The person who penned the poisoned letter acted reprehensibly. Any person of good will (and there are many who have publicly stood by the autistic child and his family) recognizes this fact. Yet, this letter sadly demonstrates why my parents were cautious about exposing my brother and me to public socialization. Did my parents’ actions stunt my social growth? Yes, but imagine what would happen if a person similar to the letter-writer were to say as much to my parents about B. to their faces, especially in the presence of his twin brother who possessed an adult’s mind at nine?

    Pray for the letter writer. Our Lord teaches: “Do not store up for yourselves treasures on earth, where moth and rust consume and where thieves break in and steal; but store up for yourselves treasures in heaven, where neither moth nor rust consumes and where thieves do not break in and steal. For where your treasure is, there your heart will be also.” (Mt 6:19-21 NRSV) Many persons find security in their property value, their bank statement, their ride. The presence of any Other outside what the deluded person considers safe to their social standing can threaten their rusting and distorted self-worth.

  • Mark VA

    I sincerely hope that the person who wrote this letter repents, apologizes, and makes amends to this boy, his family, and the community offended by such an outpouring of venom.

    We sometimes look down on each other, feel superior, entitled, better. The irony is that many of us who live with such a sense of privilege, will never experience the effects of these deplorable attitudes on those who receive them. We are surrounded by a very crude form of Darwinism.

  • Jane Louise

    One of my sons has an autism spectrum disorder (ASD). We are fortunate to be able to educate him in a setting where his “special needs” are being well met and his exceptional talents nurtured with care and dedication. But I’d like to offer a slightly different perspective on this. As I see it, my son is lucky. I’d like to think his ASD makes no difference to the thought I put into his education and his experience of childhood, but certainly the fact of his ASD forces me to think long and hard about each decision I make on his behalf (he’s still very young). But all I am really trying to do (with varying degrees of success) is what we should ALL be striving to do for our children in an ideal world, whether they are “gifted,” “normal” (meaningless word!), or have “special needs.”. ALL children have “special” needs – to be loved, cared for, recognized and responded to as individuals, treated with dignity, encouraged, and raised and educated in an environment that celebrates and nurtures their strengths and supports their development in all areas. To be believed in. But not all have those needs met. Being part of the “norm” might not always be an advantage if it subsumes one’s individuality within a misleading veneer of “one size fits all” sameness.

  • Ronald King

    Julia, Thank you for this post. My beautiful niece is diagnosed with autism and she is my hero, as I often tell her. I look up to her and hope to be like her when I grow up, but time is getting short for the fulfillment of that hope. Her parents are great and they have been with her through every trial that she has faced while developing into the most courageous and loving soul I know. Throughout my life and my career she and many others who have been diagnosed with psychiatric disorders have taught me how to understand the language of their symptoms as a response to being indoctrinated into a world of interpersonal relationships constructed with and through psychological defenses to prevent others from discovering an underlying fear and shame while at the same time being able to appear to be normal and well adjusted. These sensitive human beings can see through this façade and feel the chaos and anxiety which exists in “normal” human relations but they could not verbalize their perceptions in a socially acceptable and understandable way. They were labeled as being deficient and unable to bond instead of being seen as reacting to something that is less than loving within their environment just like the rest of us neurotypicals who have the ability to fake it until we have faked it so much that it becomes reality for us and those who cannot fake it are seen as deficient.

  • Melody

    My mother-in-law (now deceased) had a younger brother who was developmentally disabled. They were children in the 1920’s. As difficult as things are sometimes now for families and individuals coping with these issues, it was worse then; as there was little to no help available. If for some reason the families became unable to care for their disabled sons and daughters at home, their only recourse was to commit them to an institution, where they were often drugged and confined. It was basically a warehousing situation, with no attempt to teach them or develop the talents they had.
    One thing that stuck in my mind from conversations I had with my mother-in-law on the subject was that she said how very grateful she was for the friends her family had who showed some compassion and understanding. Seventy years after the fact she could still name those special friends. They could be counted on one hand.

    • Jordan

      Thank you very much Melody for your story. I’m grateful that you have told it to us.

      “Special friends” have often suffered themselves. Those who step forward to help another person in need have demonstrated the truth that selflessness lightens one’s own burdens.