leo in bloom magazine

Our April topic, initiated by Danny, concerns “thoughts on how we wish people would view autism”:

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DANNY:

Dear Nick,

Shall we discuss something to get this rolling? How about our thoughts on how we wish people would view autism? 

I will start. So I am very comfortable saying I have a disability, that I am disabled. It is true that society is not a particularly understanding or accommodating space, but I would also struggle in a more accepting and nurturing context as well. I am not assigning a societal cause to my disrupted sleep or my difficult gut or my compulsive actions or my brain-body disconnect. So I am wanting more research and intervention to help me with those real aspects of my autism. 

But I sometimes try to imagine how things would be in a world that was more inclusive and empathetic to autistic folks. How much of my anxiety and self-loathing would disappear? What if I were never taught that I was a problem? 

Over to you! 

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NICK:

You hit the nail on the head with your question, “What if I were never taught that I was a problem?”  It appears that in general the world is becoming more inclusive, and this will make all the difference in how children on the spectrum will grow up thinking about themselves. I’m given a lot of hope by the self-affirmation of the younger spellers I see at I-ASC’s Neurolyrical Cafe and the positivity of their supporters.

When I was young (I was born in 1978), it took seven years before I was given an autism diagnosis (I was also assumed to be severely mentally impaired since I couldn’t communicate). During this time, my parents were bombarded with a slew of negative diagnoses and the advice to put me in an institution. This oppressiveness affected the people around me, some of whom internalized or rationalized the negativity, calling into question their beliefs (was someone being punished or tested by God?) or deflating their hopes about who I was and what my life could be. 

Ultimately I departed from this atmosphere, but my fears and anxiety about self-worth and rejection because of my disability are still bone deep. I’ve had to work at accepting my autism and letting go of “disability = problem” equations from my childhood.

I agree with you that I would gladly accept advancements dealing with my physical and neurological issues. At the same time, I am proud of the talents and insights of my beautiful weird-wired mind. I am thankful that I am able to tap out my thoughts on a keyboard, and I feel a responsibility to explain to others what I can about my autistic experience, both as a way to affirm commonality with others on the spectrum and to educate the neurotypical world toward greater acceptance.

As an adult, I go back and forth between identifying with my “tribe” on the spectrum and wanting the lens of “otherness” to disappear. Besides me, I’d like my visual art, poetry, and the stories I write to be able to join an unlabeled world and be appreciated on their own merits. However, a “disability” or “outsider” term often is necessary merely to be given the opportunity to be seen or heard.

Do you feel this pull back and forth? Is there an alternative? Maybe “acceptance” could involve a larger spectrum–or a continuum!–of tribes and differences and identities? 

. . . Comin’ at you with a back-handed lob from my past!

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DANNY:

Yes absolutely I feel that push and pull! I think any marginalized community struggles with it. And it is a balancing act. 

I want to connect with a broader audience for both advocacy and equality reasons. Advocacy can be so self-affirming within groups, but it also has to look outward to new and more varied avenues. I feel driven to connect unexpected audiences to our mission and experiences, not just those who are already interested in disability and autism justice. And I also want my creative writing to be appreciated on its own and not as a tokenized niche offering.

But I also write so much about my disability, because of course it shapes my experiences and perspectives. How can we get the public to embrace our narratives as interesting and worthwhile beyond being “special interest stories”? 

I think that appreciating us as fully realized humans who are equal in interest to anyone else, while being mindful to pay more attention to us due to our history of marginalization, is a generally helpful approach. And some of us might well prefer being in a safe space in our community, and that is fine! But for others, we crave more. And I have so much confidence that we can share so much that is valuable and important and beautiful with the world. 

I am curious, since you and I are on the “older” side, how you have felt about the evolving narrative on how autistic folks identify – person-first versus identity-first? Does it matter to you? 

Your turn!

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NICK:

I echo your so-concisely-articulated observations!!

As for your question about identification, I think there’s a pattern to how marginalized people become accepted by society at large. Watching more television than usual during COVID isolation, I binged on many older t.v. shows from the 1950s to 1970s, and there seemed to be a pattern in script-writing to reflect and promote changing views about women, people of color, and (occasionally) people who were disabled or gender diverse. For the dominant group in society, during this period the process of accepting a marginalized or oppressed group seems to have emphasized a person-first approach. This was the model that was reflected back to us.

Sometimes humor was involved, taking characters whose groups formerly drew condescending or derisive laughter, and now placing them in situations where they could undermine stereotypes. Other times characters were portrayed as more compassionate or able to assist than those in the normative group. Either way the roles broke through prejudiced views of these people’s groups, instead highlighting likeability, and strengths in order to promote people as individuals, rather than Other.

Of course, in the real world during this period, Black Power, Women’s Lib, the Chicano Movement, and nascent Disability and LGBTQIA Rights groups were striving to create positive communities of their own in which identity-first could be celebrated.

I suspect that when a group of people is seen as negative, less-than, or a problem, often an early step vis à vis society at large is that we must assert ourselves as individuals who are equal–who deserve equitable treatment, civil rights–who demand to be noticed. We can’t truly don an identity-first perspective until we have claimed and changed our group’s narrative and made it our own, not society’s. Each of us probably goes back and forth between person-first and identity-first self-views. I think a lot of this depends on where we spend our time socially: asserting our individual equality when we are in the minority or finding commonality when we have strong connections to our “tribes.”

At home and with friends I’m more the Me Inside My Head than a particular construct. During the periods when I’ve been more active with autism or disability groups, and now as I’m joining spellers, I’ve been more identity-first, and in public I tend to identify both as person-first and identity-first, using the approach that most effectively empowers me or debunks stereotypes that accost me.