Commonality, and the Dignity of the Peculiar

This piece is the fifth in a multi-part series, telling stories about employees of Ada’s Cafe — a 501c3 nonprofit cafe in the Mitchell Park community center, which works to empower and employ individuals with diverse disabilities. To learn more about Ada’s, read the November 2017 PA Online article, or visit http://www.adascafe.org
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I admire Anna Rubinfien, and the multitudes she contains. I cannot, therefore, paint the picture of her personhood through a few stories and peculiarities. When one speaks to Anna, one necessarily encounters a deeper whole, a more comprehensive personhood. That whole is constructed through, and manifested in, an interwoven blend of thought and experience. At times, these are powerfully coherent; but equally as often, there are nuances, complexities, and incongruities winding through the contours of this woman’s life.

To understand Anna is difficult, for all these reasons and more. But to do so is informative – perhaps invaluable – for reasons beyond intuition.

A diffident 21-year-old, short-haired, standing around 5-feet-tall, Anna shakes your hand with a tactile ease and walks at her own steady pace. Originally from New York City, her personality is flexible, placing her right at home during suburban summers in Palo Alto. Her countenance is open, comforting, neither judgmental nor exalting. She speaks in staccato bursts which, if she is in the right mood, flow forth like a Beethoven symphony. But her speech is perhaps overstated by the image of an orchestra. Her language is modern, colloquial. Her volume and timbre are easy on the front-row listener. Anna seems rather the image of a late-Beethoven string quartet: moving softly, near-imperceptibly, into powerful moments of crescendo.

When I spoke with Anna on a mid-July afternoon, sun-bathed on a balcony in the Mitchell Park Community Center, I had intended to paint a broad picture of her narrative arc. Indeed, that has been the primary approach in my writings on her colleagues at Ada’s Café. Yet I quickly noticed that Anna does not think – at least explicitly – in pure narrative. She thinks little of the future, and scarcely interprets the past. Her world is concrete, contemporary. Her life is grounded in palpable joys, present moments, and purposeful sentiments.

“I’m passionate about social justice, equality for people who are minorities, especially women’s rights,” Anna says, looking downwards with a purposeful stare. “People who are not your typical heterosexual American person.”

To procure an impassioned response from Anna is not trivial, but here it is unavoidable. When asked about her passions, the young woman moves swiftly to justice: “I went to the women’s march last year,” she recalls as one example, “and it was really inspiring.” On the surface, Anna borders on the bashful. But here, circling the themes of justice and equality, she is set on putting things right.

But what is right? What does it mean, for Anna, to have justice? What does it mean to be equal? Before finding answers to those questions, one must first comprehend why, and how, Anna yearns for these things in the way that she does.

Woven into her empathy for women and racial minorities, is a beating heart for those discriminated against because of sexual orientation. “The whole LGBTQIA community is really important to me,” Anna proclaims resolutely, “considering the fact that I identify as asexual.”

For those not up-to-date on their cultural acronyms, the “A” in LGBTQIA (often shortened to various similar acronyms) does indeed stand for “asexual.” The term itself describes individuals who feel little or no sexual attraction to others, regardless of sex or gender. There are broad, branching sub-categories of asexuality, alongside a base of growing sociopsychological research.

For Anna, then, justice and respect are intuitive desires. In a U.S. society which promises “self-evident” rights, the dignities of certain groups have, at times, seemed more self-evident than others. Whether legally, socially, professionally, or individually, countless people-groups have endured marginalization and discrimination alike. As part of a community which has endured tremendous discrimination – the LGBTQIA community – Anna is an intuitive advocate for widespread equality.

Yet in Anna’s eyes, her sexual orientation has little relation to her yearning for equality. The young woman’s social ambitions are informed by, but not sourced from, her experiences. “It’s really important to me to have equality throughout,” she reminds us, “but sexual orientation doesn’t really define who I am.” She has certainly felt ostracized because of her sexuality – “People are just like, ‘Huh? What in the world is asexuality?’” – but in truth, her quest for justice is much larger than that.

Living in an ideological age, Anna is more feel than philosophy. As a student at Landmark College, in Vermont, her activities and interests are quite pragmatic: she writes papers on climate change and asexuality; she delivers presentations on social justice; and, when possible, she participates in meaningful demonstrations like the Women’s March. One might assume that, with this background and skillset, Anna would be perfect for a career in social activism. But for the 21-year-old, passion need not equal profession: “I don’t know role activism will play in my life,” she states with a curious intonation, “I don’t actually know.”

Anna does not live within the linear narrative structure which, to many, seems the only means of continuity. She has passions, drives, and motivations, but they do not follow one another like dominos. Instead, her world is structured (at least in my interpretation) like a set of concentric circles. There is some fundamental centering to her identity, but we can only perceive the outlines surrounding. Her female gender, her asexuality, her passion for social justice: these all orbit a larger, undefinable personhood, but they cannot encompass her humanity. This is a critical principle for Anna; one reinforced constantly by Kathleen Foley-Hughes, the owner and manager of Ada’s Café. “I don’t know how to explain how much Kathleen has helped me with my life,” Anna utters with affected eyes, “I honestly can’t believe it.”

To comprehend why Kathleen means so much to Anna, we must take a step outward – or perhaps inward – among the concentric circles of this young woman’s identity. We must consider yet another aspect of this young woman’s multifaceted self: her learning disability.

In many ways, Anna’s journey with Attention Deficit Hyperactivity Disorder (ADHD, formerly labeled ADD in psychological circles) has paralleled her journey as an asexual woman. In both senses, there is a lived experience deeply tied to one’s orientation or disability – but also a sum identity far larger than its parts. “It doesn’t define me,” Anna says of her ADHD, looking rather upwards now towards the open sky, “but it still makes it difficult to pay attention to things on a daily basis. I don’t like talking about it, because it’s not my favorite thing in the world.” Listening to Anna’s soft, timorous voice, one finds an odd sense of courage. A thread of purpose, of humanizing grit, weaves through her most vulnerable moments. And, importantly, she is not the only one.

In the medical literature – most notably the DSM-V, the standard manual for psychological and psychiatric diagnosis – ADHD is characterized by inattentiveness, impulsivity, and hyperactivity. Adults with ADHD can have difficulty organizing tasks, remaining focused for long periods of time, staying still, and/or restricting their impulsive behaviors. According to a 2006 study from the American Journal of Psychiatry, approximately 4.4% of U.S. adults live with the condition (1). Yet at the same time, much remains unknown about ADHD. For instance, its manifestations are highly variable, and its terms too broad to encapsulate the nuanced experience of any one human being.

Researchers are also uncertain of how, exactly, ADHD arises in any given individual. Studies exist which point toward various dysfunctions in the prefrontal cortex – the seat of executive function and decision-making – possibly brought about by alterations in neurotransmitter activity in the brain (2,3). Many of these may be genetic at root, as parents and siblings of children with ADHD can be two to eight times more likely to develop the condition.4 But there is also the broader cultural context: “Normal” or “neurotypical” behavior is, by its very definition, culturally influenced (if not determined). As sociologists have noted, our perceptions and understandings of “normal” behavior will necessarily paint our perceptions of the “abnormal” (5,6).

All this to say, Anna Rubinfien’s experience is far from singular. Her ADHD is highly personal, and affects her daily. She has trouble focusing at times, growing fidgety or restless. She feels different in a world which demands conformity. But Anna still recognizes the powerful, unifying aspects of her condition: “It’s still kind of annoying to have,” she says of ADHD, “but through that, I’ve gotten to meet some amazing people. One of my best friends in college has ADD, and he’s asexual, so it’s really cool to have that commonality with someone.”

Commonality. This word is an important theme in Anna’s life. In many ways, her learning disability presents challenges in and of itself; but the resultant judgement is, more than anything, what really bothers her. She finds herself on a psychosocial island, misjudged and misunderstood, simply for lack of neurological sameness.

This is why commonality, belonging, empathy, all matter to Anna. This is why she rejoices in those who “understand what I’m going through on a daily basis.” Even in a progressive, liberal culture, where Anna feels – at least socio-politically – quite at home, understanding is difficult to come by. In a culture perfused with vain intellectualism, one can feel ostracized by intellectual differences. For Anna, her experience with ADHD has awakened a profound exhortation: “Don’t judge us based on our looks, or our LD,” she implores, “or if we have any type of developmental disability. We’re human, too.”

When most people (myself included) think of judgement and discrimination, the images are personal and interactional: the bigot, the immature child, the schoolyard bully. (Some might add, the President of the United States.) But there are deeper, more pervasive manifestations as well. Students with learning disabilities may feel a lack of support at school; academic curricula and corporate organizations may be poorly designed to empower disabled persons; and these individuals may incur false stereotypes, allowing structural inequalities to grow from implicit bias. For the justice-minded citizen, inequality is upheld by the proverbial pillars of ignorance and disdain.

In Anna’s eyes, judgement and discrimination are wrong, regardless of social scale. Not inconvenient, not immature – but wrong. “It’s hurtful to see my fellow people with learning disabilities or developmental differences go through this,” Anna says, of those who have faced her trials, “it hurts to see my fellow humankind get taunted, or hurt, or messed with.” Her words, her exhortations, are neither moralist nor agitated. They are straightforward, but emphatic. One cannot listen to them, let alone hear them in person, and leave any such communities to their societal plights.

Enter Kathleen. As the founder and owner of Ada’s Café, Kathleen has developed far more than a cozy community coffee spot. She has established a veritable safe haven for persons with disabilities and differences, a space to feel valued and known. Anna herself has spent the past four summers working at Ada’s, and has never felt more human: “I feel like I can be my best self here,” she says with a grateful tone, “and strive for success.” Surrounded by co-workers just like her, all challenged and gifted by their various singularities, she is accepted. More than this, she is understood.

When asked about her colleagues at Ada’s, Anna instantly mentions her close friend, Erin. Coworkers since Anna first began at the café, the two are now kindred spirits, finding joy and meaning in their friendship: “I’m really happy I met her,” Anna says of Erin, “she’s really awesome. I love working with her. She’s always teasing me about everything.” This feeling of kinship, however, is not restricted to Erin. When I mention other Ada’s employees whom I have interviewed – Jazmin Toca, John Collins, Jeremy Teter, Powell Gaynor – she tosses out the words “sweetheart,” “hilarious,” and “really cool,” “great guy,” as if all the brokenness of the world outside were mended for a few hours, each time she entered that café.

And if anyone has the grit and fortitude to mend that brokenness, it is Kathleen. When I first told Anna that Kathleen had recommended I interview her, she found this “an honor – seriously, an honor.” That honor stems from a deep appreciation for, and perceived indebtedness to, the founder of Ada’s Café. “I don’t know how to explain how Kathleen has helped me with my life,” we remember Anna saying, “I honestly can’t handle it.”

Amidst cultural indiscretions and personal imperfections, Anna feels truly valued, truly known, by Kathleen. The culture at Ada’s – a direct outpouring of its owner’s love – is equally life-giving. Anna begins to explain: “It makes me feel like I’m a part of a” – and goes silent, rendered speechless by generous love.

But then she resumes: “It’s an… inspiring experience,” she says, of working at the café, “I’m actually accepted in this community, and it’s one of the most amazing things. The people around me understand me, and it’s like a family.” Commonality – even when unspoken, this word rings powerfully through Anna’s imagination.

“Each one of us has flaws,” Anna then says, denoting the commonality of human imperfection. “No one’s perfect. We’re not perfect. We’re just human beings.” More than this, she agrees with the notion that if all humans are flawed – if each of us is particularly strong and particularly weak in some fashion – each person is, in some sense, disabled. We all have disabilities: some are just more visible, more socially-enumerated than others. In that sense, we ought to have compassion, and make accommodations for disabled persons: for they are, in no small fashion, a permutation of ourselves.

Yet, as always, there is nuance to Anna’s perspective. The young woman has an interesting, if not perfectly intuitive take on what it means to be human. Commonality is not, for her, monolithic conformity. To be known is not to be imitated, nor to be always imitating. In Anna’s eyes, differences matter.

“Just because we’re all disabled,” she sharply observes, “doesn’t mean we’re exactly similar.” At a cursory glance, this is perplexing. Why in the world would Anna – someone who has felt deeply judged on the basis of difference – emphasize that same difference? Would not total sameness better serve her dreams for equality? Yet still she doubles down: “We can’t just pretend we’re totally similar with each other. We’re not the same.”

Contrary to intuition, distinctions play a key role in Anna’s vision for equality. Yes, there exists a common human condition, a common human dignity. But that commonality has, at times, made a tyrant of itself. If humans must become cardboard cutouts of one another to deserve equal respect, how “human” would the resultant world be?

And what, after all, does Anna want? Does she envision a world on the one hand, replacing judgmental glances with isolated pockets of indifference? Is the only other option to move towards total sameness, that great subversive tyranny?

No. What Anna wants, in fact, is quite clear. She sees in every human being not a common totality, but rather a core commonality. There are themes which weave through any human soul: joy, suffering, dignity, disability, and others. But human life is not merely defined by joy, suffering, dignity, and whatever other grand profundities one chooses. Human lives are also composed of the mundane, the piquant, the idiosyncratic. One’s profession, social status, hobbies, passions, all add nuance to the picture of the self. Sexual orientation and developmental differences just as well. To honor those common themes is not to discard the real distinctions between ourselves. But to ignore peculiarity is to deny a concept of the self entirely.

In a concise coda to the symphony of our conversation, Anna sums it up neatly: “We’re not abnormal,” she says (though of whom, I am uncertain). “But we’re not ordinary.”

In a life so full of complexities, so rapt with trial and joy alike, one could hardly expect simplicity. Nor could I, after forty-five minutes with Anna, ever hope to fully depict her beautifully-complex self. I could not hope to explore the depths of her friendship with Erin, or the tenacity with which she is currently pursuing her college degree. I could not imagine myself in her shoes, running her radio show back at Landmark College. No, Anna’s life is unique; it is brilliantly distinct. She paints vivid pictures of her inner world, but I do not live in that world. I am something more like a traveler, catching brief glances of a country which I do not understand, filled with citizens quite like, and yet quite unlike, myself.

But they are so like myself indeed. And for that, I admire Anna Rubinfien all the more.

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References
1. Kessler RC, Adler L, Barkley R, et al. The prevalence and correlates of adult ADHD in the United States: results from the National Comorbidity Survey Replication. Am J Psychiatry. 2006;163(4):716-723. doi:10.1176/ajp.2006.163.4.716.

2. Willcutt EG, Doyle AE, Nigg JT, Faraone S V, Pennington BF. Validity of the executive function theory of attention-deficit/hyperactivity disorder: a meta-analytic review. Biol Psychiatry. 2005;57(11):1336-1346. doi:10.1016/j.biopsych.2005.02.006.

3. Arnsten AFT. Fundamentals of attention-deficit/hyperactivity disorder: circuits and pathways. J Clin Psychiatry. 2006;67 Suppl 8:7-12. http://www.ncbi.nlm.nih.gov/pubmed/16961424.

4. Smith AK, Mick E, Faraone S V. Advances in genetic studies of attention-deficit/hyperactivity disorder. Curr Psychiatry Rep. 2009;11(2):143-148. http://www.ncbi.nlm.nih.gov/pubmed/19302768.

5. Bröer C, Heerings M. Neurobiology in public and private discourse: the case of adults with ADHD. Sociol Health Illn. 2013;35(1):49-65. doi:10.1111/j.1467-9566.2012.01477.x.

6. Green JG, Gruber MJ, Kessler RC, et al. Diagnostic validity across racial and ethnic groups in the assessment of adolescent DSM-IV disorders. Int J Methods Psychiatr Res. 2012;21(4):311-320. doi:10.1002/mpr.1371.