Justice, Dignity, Accompaniment and the Theo-Ethical Challenge of “Neurodiversity:” A Reflection

2 Comment(s) | Posted | by Teresia Hinga |

Recently, I chanced upon a simultaneously heartbreaking and heartwarming story of gratitude by a mother of an autistic child, a member of what the mother described as a “neurodiverse”  family. 

According to her , the family had traveled to Orlando FLA., having made the special trip so that their autistic child could get to ride his favorite ride: Spiderman. After a long wait in multiple queues,  and just as they were about to get to the top of the queue, it was announced that the special ride that they had waited for the whole day had broken down and was declared unusable.  Quite understandably , the boy was extremely upset and began crying inconsolably and lay on the ground sobbing in frustration. Lying there and sobbing, he became a spectacle of sorts, and the parents in desperation and possibly embarrassment, tried to lift him from the ground. He would not budge or stop crying.

That is when a staff member at the ride sprung to action, and instead of joining the parents in their efforts to silence the boy and remove him from the spectacle he had become, the staff member just joined the boy and lay down right beside him. Instead of hushing him up, he encouraged him to let it all out, thus affirming the boy’s right to be upset and expressing and calling for empathy from the bystanders rather than “reprimanding the boy.”

By her gesture of lying there with the boy, the staff member acknowledged the boy’s pain and his right to be upset and to express his frustration (possibly in the only way available to him). The staff member simultaneously acknowledged and executed the duty (or the virtue?) to accompany the boy in his pain. She accompanied him in his moment of frustration and ended up saving the day as the boy, soothed by her companionship, calmed down enough to consider riding other rides that were still functional.

This story was thought provoking on several grounds. First of all, it triggered questions about accompaniment of the vulnerable, an idea associated with Oscar Romero’s approach to those rendered vulnerable by impoverization. Instead of  trivializing the pain or even blaming the child with vulnerability, the staff member chose literally to accompany and show solidarity with him. I am sure  that this “solidarity” was not part of her training manual. The act seems to have been spontaneous and unrehearsed, suggesting that the “virtue” of empathy and solidarity was already present in her, this being but an occasion to express it. This raises questions: Is solidarity a moral virtue or a duty? Is solidarity obligatory or is it a sign of a virtuous persons?

Whatever the answer, it would seem that for the staff member, solidarity and accompaniment  are part of her well formed “virtuous character.” Although as I have learned by reading around this article, Disney commendably has a set of guidelines and protocols to make Disney “friendly” and accessible to guests whom they describe as having “cognitive disabilities “ or who are in the autistic spectrum.[1] Strictly following those protocols would have led the staff member to point out designated “take a break” zones.  Instead, she accompanied him right where he was and helped calm him down, not by reprimanding or coaxing or tricking him into “good behavior” or whisking him off to a more discrete designated place to have his “meltdown” as the guidelines suggest. The staff member  responded with what in her view was the best for this particular child at this particular time and not following mechanically the guidelines in the book. In my humble view there are lessons to be learnt from this staff member about the  true meaning of solidarity, empathy and accompaniment, particularly though not limited to, the accompaniment of the “neuro-diverse” in our midst.

This story reminded me of a book I began reading some time back: Vulnerable Communion: A Theology of Disability and Hospitality.[2]  In the introduction, the author describes how the church in which he and his family, including his autistic son, worshiped, effectively excommunicated them when some parents asked the pastor to not allow the “disruptive” child into Sunday school. The pastor complied and asked the “neurodiverse” family to leave. Though he was apologetic, the father says, the damage was done. The parents of the autistic child wondered what to do. Where to go.

Reynolds continues “Over the years  we had been through behavioral programs, family counseling … and psychiatric care…At this point we were just beginning to come to terms with our sons recent diagnosis Tourette’s syndrome… Later he would also be diagnosed with Asperger’s syndrome, bipolar disorder and obsessive compulsive disorder…  At this point he was 7 years old and we knew only of the Tourette’s... We stopped attending this church… In fact we stopped attending the church altogether.[3]

With Reynold’s story, the question persists: What ought to be the response to him and his family and many others like him? Is leaving the church the way out? What could be done to truly accompany rather than excommunicate such families?

More food for thought on this topic came to me from a rather unexpected source: This time it was a self identified “Neurodiverse” person who lives with the Autistic syndrome - Greta Thunberg, the young Swedish girl whose story is now trending.

She has become globally known for  her unequivocal advocacy for action in response to climate change. Recently, she sailed (rather than flew) across the Atlantic to underline her message regarding the urgency of reducing carbon emissions and our carbon footprint. She is not seeking sympathy for her disability. Rather, she is drawing attention to a missed dimension when we consider what our responses ought to be to those with disabilities, including “cognitive disability.” Greta points out that her “neurodiverse” status ought not to be a cause for stigma, expulsion, silencing and excommunication from society. She says that her achievements are not despite, but perhaps even because of, what she calls the “gift of Asperger’s.” This enables her to think and speak “out of the box.” According to her, such thinking is urgently needed if we are to deal effectively with the urgent crisis of climate change.

As I continue to reflect on the question of neurodiversity, I see in Greta’s self reporting and reflection even more lessons to be learnt. She invites us to see diversity, even neurodiversity not as a problem to be solved (by hiding, erasing, or efforts to “homogenize “ difference.) Rather , difference is a fact of life to be navigated in ways that maintain the dignity of the different other, including the neurologically different… Perhaps, with Greta’s encouragement, we might even begin to think of and embrace “the gift of Asperger’s” and other forms of neurodiversity in our midst.

At the very least, we could  recognize the moral agency of all, including those with “autistic” syndrome and begin to take heed of their needs as well as their contribution to the flourishing of all. Such is the case for Greta who admits to what clinicians depreciatingly call being “selectively mute” but which she describes as a positive thing. In her view she selects to speak when necessary … (e.g. as an outspoken advocate for climate change action.)

She is neither mute nor disabled, but vocal and able to challenge all of us to deal as we must with the man-made crisis of climate change. As we continue to discern our way around the theo-ethical implications of neurodiversity, Greta invites us not to dismiss or silence what the neurodiverse say from the depths of their moral agency. Greta is clear in her appeal: We all need to take action to ensure that there will be a future for her and her grandchildren. As she says in a recent TED Talk[4] “we have had 30 years of pep talk” that has achieved little. It is time to take action, perhaps even time to join the young students around the world going on strike for climate action on 20th September.[5]

Greta calls for solidarity at a level that benefits not just her as a neurodiverse, person but solidarity that benefits all. She reminds us that though we may be different, we are interconnected and share the same benefits from earth our common home, or, if we fail to take action, the “wrath” of a neglected and desecrated mother… earth.

Perhaps it is  time for a more  robust conversation on accompaniment, solidarity and the theo –ethics of neurodiversity, a conversation that recognizes the agency and dignity of the different other, including the neurologically different.



[1] See link to Disney guidelines and accommodations for Guests with “cognitive disabilities” which the mother in the story above prefer to call “neuro diverse “ here. https://wdpromedia.disney.go.com/media/wdpro-assets/help/guest-services/cognitive-disabilities-services/wdw_cognitive_guide_rev.pdf

[2] See Reynolds, Thomas E. Vulnerable Communion : a Theology of Disability and Hospitality : Brazon Press 2008

[3] ibid. p.11.

Comments

  1. Mark Miller, C.Ss.R.'s avatar
    Mark Miller, C.Ss.R.
    | Permalink
    Wonderful article. It begins with actually 'seeing' something extraordinary (would, though, that it were ordinary), providing beautiful insight (especially in moral categories) and then draws excellent conclusions without moralizing. Thank you.
  2. Dominik Opatrný's avatar
    Dominik Opatrný
    | Permalink
    Great article with a great opening story - thank you. Once I heard an psychologist telling a very similar experience: saving the day of his angry disabled son by laying down on the pavement next to him.

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