I’ve been lucky enough in my lifetime to witness sweeping cultural changes with respect to race and gender equality. Part of this was the changing larger cultural context of the times in which I grew up and part of it was because the regional headquarters of the Klan was a few miles from my childhood house. Moving away provided an opportunity to experience some of these changes instantly rather than so gradually as to be difficult to discern. I’m not suggesting we’ve solved all these problems. Far from it, unfortunately. But I am suggesting that we’ve made sufficient progress that we are now in a position to look back and learn from our successes and our failures, and to apply these lessons to inequality in other contexts. For me, one of those lessons has been how we hack culture through language.
I have always had a facility for language and learned to read between about 3 and 4 years old. I don’t mean Dr. Suess either, although those books were a favorite at the time. I mean actual functional literacy. Once when my mother was too sick to go to work and asked me to bring her the newspaper, I offered to read to her like she did for me when I was sick. She explained that it was “for grown-ups” but I insisted and she gave in. Once she explained about the newspaper’s sections and how the content was structured, I was able to navigate, read her the headlines and then read the articles without too much assistance.
As an undiagnosed adult Aspie, I didn’t know why I had so much difficulty understanding others. It was obvious to me that there was some unspoken communication to which I was not privy. I would find out much later about Asperger’s and body language but at the time what stood out to me like a lighthouse beacon were language differences between my predominantly white, Klan influenced neighborhood and the mixed-race school to which I was bussed. Later when I moved to Charlotte, North Carolina, the language shift was abrupt and therefore obvious.
Certain terms and phrases, particular logical constructs, and colloquial idioms, all differ across cultures that tolerate racial or gender bias versus those that do not. Typically there’s an established language of bias that is gradually replaced with a different vocabulary reflecting the new attitudes. The more exclusive, biased populations view the new terminology derisively as “politically correct.” In the more inclusive populations the “politically correct” terminology is normal and the old terminology is considered rude and offensive. Most people believe these changes follow from the cultural shift. I propose that changing the language is not only integral to the cultural shift, but that it is actually causal. Change the language and the culture will follow.
This post was prompted by a Facebook discussion in which a good friend asked for suggestions as to how to represent autism in a tattoo she planned to get and mentioned that she likes the jigsaw puzzle logo. I believe the puzzle logo is an artifact of the cultural paradigm that perpetuates treatment of autistic individuals as second class citizens. If my hunch is true, then it is possible the puzzle logo would be viewed by a more compassionate culture as being rude and offensive. That would be unfortunate, considering the permanence of tattoos and I advised against the puzzle logo. Since this caused something of a fuss on the Facebook post, I felt it deserved a bit more exploration.
Before I talk about the puzzle logo, I want to set the larger context. Our inventory of cultural expressions regarding any population not clustered at the top of the bell curve, on just about any arbitrary measure, is one of defect or deficiency. Start with a normal person and amputate a limb, and you get a disabled person. Never mind that we have double-amputees running marathons with finishing times that would kill most able-bodied people, lose an appendage and you are disabled. The word itself reflects the paradigm. The prefix “dis” modifies the word “abled” indicating something less than optimal.
The puzzle logo and all its variations thrives in part because of the congruency with this cultural paradigm. A jigsaw puzzle is by definition a whole entity which is incomplete so long as even one piece is missing. This makes perfect sense if your understanding of autism is “take a normal person and remove communication skills, tolerance of sensory stimulation and cognitive empathy and you get an autistic.” Take a rectangular image, decompose it into many interlocking pieces, remove one and you get a symbol to represent autism.
One respondent to the Facebook post defended the puzzle logo rather passionately: The puzzle piece is a SYMBOL for the Autism community-for you to say we’re representing the fact that these individuals have pieces missing is YOUR ignorance-not ours. A piece “missing” also means there is room for something more-more knowledge, more acceptance and more EVERYTHING!
The writer points out that because it’s a symbol it is open to interpretation and not literal, and that my interpretation is wrong. But note the wording of the next part “…for you to say we’re representing the fact that these individuals have pieces missing…”. So the concept of the autistic person as having pieces missing is factual, the objection is that this factual aspect wasn’t the intended representation of the puzzle logo. I’ll concede this probably isn’t the author’s intended meaning but my point is that it is very hard to express a different meaning when operating from that cultural bias. No matter what we intend, our results are always influenced by the cultural bias in which we operate.
If in fact the notion that “a piece missing means there’s room for something more” is accurate, a jigsaw puzzle is a terrible way to express that. There is one and only one correct solution to a jigsaw puzzle. The raison d’être of a jigsaw puzzle is to provide the challenge of restoring the component pieces to that desired solved state. To say that a single missing piece can variously represent “room for something more-more knowledge, more acceptance and more EVERYTHING! ” ignores the fundamental nature of jigsaw puzzles but it does reinforce my argument. Whatever quality of “more” that missing piece might represent is constrained to however much of that quality it takes to complete the puzzle. Comparing an autistic individual to a jigsaw puzzle implies in the observer a challenge to restore that individual to a solved state, a better state, a normal state.
We see this paradigm expressed in well-meaning but flawed public policy. For example, consider the density of meaning contained in the word “mainstreaming.” It implies multiple streams of which one is primary and identified as the “main” stream, and that the child who is “mainstreamed” rightfully belongs in an implied niche stream. The justification for this approach is a net overall benefit to the special needs child from being immersed in a population of normal kids within which they learn to assimilate.
Without arguing the efficacy of the methods, take a look at how the language reveals the paradigm. If you start from the position that an autistic kid is deficient then it is almost impossible to devise an integration approach that does not focus on making up for that kid’s deficiency. That’s a world of bias and prejudice. That’s our world today.
Some people hope for a more tolerant world. Even that well-meaning ambition leads to bad results. To “tolerate” something is to wish it would change and accept that it won’t. The pinnacle of “tolerance of autistics” is a grudging acceptance and a lingering wish to not have to put up with the problem anymore. Parents of kids in the main stream tolerate special needs kids in the class. To their way of thinking, the special needs kids deprive their kids of education by disrupting the class and disproportionally diverting the instructor’s valuable attention.
I have never heard anyone, teacher, parent or student, talk about the value to the neurotypical kid of having the autistic kid in the class. As adults the mainstream kids will be expected to work side by side with people of all races, faiths, cultures, ages and abilities so you would think that exposing them to a diverse population at an early age would be beneficial, even crucial, to achieving that outcome. Instead what they are taught by our current public policy, institutional approaches, and even the very language we use, is that autistic kids are a burden unless they can be cured. Since they cannot be cured, the implication is that autistic kids will always have less intrinsic worth as humans than normal people. That’s a terrible outcome but almost inescapable considering our public policy, which inherits from our language and paradigms rooted in deficiency.
In a world where diversity is the core paradigm, language is different therefore policy and attitudes are different. If you view people as being fundamentally balanced, then for every obvious deficit there is a corresponding gift. If that gift is something a neurotypical person can relate to such as super math abilities, the ability to calculate dates or eidetic memory, we call the person a savant and even idolize them. But most autistics are not obvious savants. In today’s culture we marginalize anyone who shows a deficiency unless they can redeem their worth with a savant-level or other obvious skill. In a diversity-based culture we would assume the person has gifts that are not obvious and look harder.
In her book The Secret Language of Dolphins, Patricia St. John describes how she learned to let the dolphins teach her how to communicate with them instead of the other way around. This made her reconsider the techniques we typically apply to draw non-communicative kids out of their shell. As with many interventions, the traditional approach is grounded in a core belief that an inability to communicate in the style of neurotypicals is a deficiency and that correction of that deficiency is the optimal cure. Making “them” more like “us” provides the one and only solution to the jigsaw puzzle. After working with the dolphins she tried the approach of simply spending time with the non-communicative kids and listening intently for cues to indicate they were attempting to teach her their communicative style rather than trying to force hers upon them. The book recounts a few of her successes using this approach. If we actually embraced neurodiversity in schools, we might teach using elements of this approach and close the diversity gap with real human relationship bonds.
The point is that we can hardly fault people for struggling with neurodiversity when all the cultural references and language constructs are based on an understanding of autism as a deficiency. If we wish to change the culture, we’ll need to change our language and symbology. I’ll give an example from the history of gender bias.
When I first moved to Charlotte, my co-workers would make fun of me for using gender-neutral terms. The gender bias in the workplace was an open secret and my use of words like “firefighter” rather than “fireman” singled me out as being odd. There was a considerable amount of peer pressure for me to adopt the prevailing gender-biased attitudes. If I let on that I was offended or that I suspected many of the women we worked were as well, I was ostracized for being too “politically correct.” It would be impossible to resolve the gender inequality issues with regard to career advancement while this cultural bias existed. There was no threshold through which a woman could rise to finally escape the gender bias, and in fact the higher she rose the worse it was. At least in the trades a woman could be “one of the guys” but in the white collar world of management she was never a true insider.
But Charlotte is a banking town and as business here boomed, the influx of people from California, New York and elsewhere disrupted that “Good Ol’ Southern Boy” network of the corporate elite. Many of the same guys who once chastised me for being too politically correct now are all about gender neutrality. As the gender-neutral language seeped into the culture, it became necessary to be aware of one’s language and be on guard not to slip back into the former idioms. This heightened awareness results in a reevaluation of the underlying principles so that in an effort to be less gender biased in their spoken dialog, the person becomes more gender neutral in their core so as to be less prone to making the offending remarks. The language change precedes the behavioral change. We haven’t solved the gender inequality issues here in Charlotte but it’s a lot better for women than it was 20 years ago when I first arrived.
I believe the same mechanism of change applies to autism. Currently we treat autism as a deficiency that makes people something less than normal. Our interventions are about “curing” autism or “restoring” normal function. Or they are about teaching the autistic person coping strategies to get by in a normal world. When these do not work, we educate neurotypicals how to deal with autistic symptoms. But it never occurs to us as a culture or in our public policy that the autistic person may have significant gifts that should be preserved or that perhaps some of the changes needed must come from the so-called normal people.
How many teachers have ever said “Oh good, I was hoping an autistic kid would enroll in our school. Now we have an opportunity to teach our mainstream kids about neurodiversity, compassion and basic human dignity.”? What they normally say is “We’re not equipped to handle your child.” Or maybe their only adjustment is a one-size-fits-all program that tries like hell to keep the “special” kid from interfering with the “normal” kids’ educational experience. It is extremely difficult to arrive at the conclusion that having an autistic kid in the class is an opportunity rather than a burden, as long as we see autism as a defect or deficiency and focus only on those expectations which the autistic individual cannot meet.
But if we begin to see autistic people as different instead of defective, then it will show in our language. A difference is not a disability. A disability is something that affects an individual who must then overcome and compensate. All the responsibility to change is on the disabled person. A difference has more symmetry and a tacit understanding that both parties must work to find a common ground. In that future world, our language and symbology will be more inclusive.
I expect that in such a future world, that jigsaw puzzle with it’s one and only one solution, oft portrayed just short of completion with a piece or two removed, and representative of an individual or a population in isolation, will be seen as offensive. In its place will be an icon showing multiple individuals in symmetry, perhaps with each bringing something different to the relationship. It might be an icon of clasped hands, profiles of two or more people, or suggestive of a community. Rather than the using a device like a puzzle with finite upper bounds and a single solution, it will probably rely on open-ended icons suggesting limitless growth and potential such as a flower or a tree.
Finally, I propose that a good symbol for autism isn’t a symbol “for autism” at all. Instead it would be about the ability when embracing our differences to achieve goals greater than we possibly ever could by trying to suppress diversity or working in isolation. Because in the end it isn’t about autism versus neurotypicals. It’s about a culture where each contributes according to their particular strengths and where the value of a human life is measured not on a balance sheet but by a person’s courage, passion and integrity. That’s not possible using language and symbols grounded in “you” and “me”, “us” and “them,” “ability” and “deficiency”. But if we dare to be politically incorrect, if we dare to risk the good graces of peers and friends by saying this stuff is important, if we actually change our language and begin to think in terms of inclusion so that there is only “us” then just maybe we will get to see culture and public policy follow our lead in our lifetimes and replace the stigma of autism with basic human dignity and an opportunity to participate as first class citizens.
Language is open source.
Culture is open source.
Hack the language to hack the culture.
It’s one of the few things that does.
Update May 17, 2015
This topic surfaces frequently in forums and this evening Paula Durbin-Westby mentioned a coordinated campaign to get people to “like” the puzzle piece. If you’ve read this far, you know how I would respond to such pressure. However in the conversation thread, several other people posted links to their own essays about the puzzle piece. I’m linking to them here for anyone interested in getting a second (or third or fourth) opinion.
- Unpuzzled.net – Here’s an entire web site devoted to opposing the puzzle piece as a symbol for autism.
- Goodnight Autism Puzzle Pieces – Judy Endow’s excellent explanation of her reasons for disliking both the puzzle piece and Light It Up Blue.
- My Position on the Puzzle Piece Symbol Representing Autism or Autism Awareness – Kerima Cevic’s succinct but effective description of the puzzle piece logo as one of oppression.
Got one I need to add? I’ll happily link to it from here.