“In a world that doesn’t want queer people to be happy, queer joy is subversive.”

This was the thesis statement of the first panel I attended last weekend at Flame Con, an annual comics convention in New York City for LGBTQ+ people.  This panel “The Subversive Simplicity of Queer Joy” provided a much-needed affirmation that queer people – in fiction and in real life – deserve happiness just as much as cisgender-heterosexual people do, even if most of the world doesn’t want us to have it.

Flame Con is a utopian rainbow bubble full of magic, wonder, inclusion, and uninhibited joy. Flame Con celebrates people’s differences and tells queer people of every race, ethnicity, ability, neurotype, religion, age, and gender: “You are not alone and you deserve to be happy.” Purely by coincidence, the day before the con I also attended an unrelated event celebrating queer love and joy in the real world. For me, these two events could not have come at a better time.

Warning: I’m going to talk about death and violence in fiction.  I will not name names and I will be as vague as I can.

This means I can’t provide links as often as I usually do.  Instead, from time to time I’ll mention a term to research if you want more information. Be warned that you will likely encounter spoilers if you choose to do that.

Again: if you don’t want to read discussions about non-specific queer character death, you’ll want to leave this page now. I understand.

Anyway.

This past weekend, I spent three days in spaces where the idea that queer people deserve happiness was not in dispute. This provided a refreshing change from the past two weeks, as well as the 12-13 years before that, when queer joy has been refuted or rejected with alarming consistency.

Queer characters, despite under-representation in mainstream media especially, are disproportionately killed in fiction.  This pattern includes movies, television shows, books, podcasts, video games, and comics. Even fan-created webseries are not above giving queer characters the axe.

(For more info, look up “Bury Your Gays.”)

This of course means that many queer characters who are still alive at the end of their stories are mourning the death of a significant other.  There is a history to this: In the first half of the 20th century, films and books were prohibited from portraying gay or lesbian characters who did not eventually die or marry a character of a different gender.

(For more info: “Motion Picture Code,” “Lesbian pulp fiction.” I don’t know if there were rules about transgender characters, but I think I can make an educated guess.)

Although those rules aren’t technically in place anymore, the pattern remains. To this day, stories about LGBTQ+ characters disproportionately end in tragedy and grief.

An article in The Guardian in 2013 (linked article contains SPOILERS for several pre-2013 films featuring LGBTQ+ characters) stated:

Whether it’s suicide, AIDS (a particularly maudlin [Actor] performance in [Film] employs both), being beaten to death, state execution, getting shot, or getting raped and then shot, LGBT characters are just not allowed the happy endings that their straight counterparts enjoy. My personal favourite comes from [Film Title With Link to Said Film], in which [Actor] simply drops dead for no reason. Presumably overwhelmed by sheer homosexuality, his heart can no longer keep beating. Beware, non-heterosexuals: Sudden Gay Death Syndrome can strike anywhere.

The first time I saw a romantic relationship between same-gender protagonists on mainstream television, I was in my late teens. I felt drawn to them, fascinated by them for reasons I could not identify. This beautiful couple grew, struggled, and overcame hardships together, and I fell head-over-heels for them before I realized they were like me. This relationship formed one of the first steps of my (very) long journey towards self-understanding.

Then one of them died suddenly and unexpectedly. The other spent the rest of the series in various stage of grief and heartbreak as she gradually overcame the loss. Even though other characters on the same show died before and after this character did, her death in particular ripped me apart for reasons I did not understand at the time. It was not until several years later, when a different show killed off a fan-beloved lesbian character, that I started to find the words to explain why the experience of grieving a queer character was so different from mourning a straight-cisgender one.

The over-representation of LGBTQ+ character death can cause real damage to queer people who are beginning to understand their identity.  Representation in fiction is a powerful tool that can shape the identity and self-worth of its audience, but it is also a dangerous one.  How can it be safe for queer people to own who we are if all that awaits us is tragedy? How can we learn to value ourselves when media is constantly telling us we deserve to die?

Since queer character death is so frequent in fiction, there is a ton of variation in terms of how it is presented and how each incident fits into its respective narrative.  For example, there are contexts where character death is more likely, including war, dystopia, frontiers, and historical or pseudo-historical settings.  In narratives that involve action, violence, and risk, it’s unrealistic to expect all characters to survive.  Even though LGBTQ+ people form a very small percentage of these characters, its neither fair nor practical to ask each one of them to be spared.

Sometimes the death of a character – queer or otherwise – serves the plot in a way that is organic, meaningful to the story, or respectful to the character.  Obviously that judgement call that will vary from person to person, but it’s not productive to pretend that well-written queer character death isn’t possible.  Also – especially with long-running television shows – there are times when a character must be written off because the actor is no longer available to play them.  In these instances, death may be the most reasonable way to make this work with the narrative, rather than performing plot-aerobics to remove that character permanently .

That said, there are several patterns that can make instances of queer character death more problematic than they already are. Frequently, the death of an LGBTQ+ character is directly related to their queerness; examples include AIDS, hate crimes, or suicide.  Many queer characters die minutes after confirming or advancing a romantic relationship and/or sleeping with a character of the same gender. Alternatively, they may be killed off in the same episode or book in which their relationship was confirmed, advanced, or revealed to other characters.  These plot decisions tell the audience that queerness is the reason these characters died.

Queer character death can also feel pointed if the death doesn’t serve the narrative or fit the setting.  Again, this point depends on subjective judgements made by readers or viewers.  Still, when a cis-het character dies in a way that feels incongruous with the story, it may be seen as bad writing or death for shock-value (or one of a number of other problematic tropes).  When it happens to an LGBTQ+ character, it fits into larger pattern which suggests that creators see queer characters as dispensable or don’t know how to write LGBTQ+ stories with happy endings.

This interpretation carries even more weight in stories where only queer characters die, in endings that show most or all cis-het characters still alive while the one, if any, remaining LGBTQ+ character grieves.

Regardless of individual circumstances, the sheer number of queer character deaths in relation to the number of queer characters in fiction is so disproportionate that it sends a message on its own.  In contrast, the underrepresentation of queer stories with happy endings, especially in mainstream media produced by larger corporations, is staggering.

(For more info, check out this infographic about dead lesbian and bisexual women characters on TV. Obvious warning for SPOILERS for a whole bunch of shows released in or before 2016.)

Yes, there are a lot of complicating factors to the “Bury Your Gays” trope.  Almost inevitably, especially in recent years when this trope has been getting more attention from mainstream media, every time a queer character is killed off we have the same conversation.  Each time, we ask if this particular death made sense in this particular instance. No detail is left unturned. There are productive and unproductive arguments from both sides of the question.

The trouble with the “This Time It’s Okay” argument is mainly that it ignores or dismisses the larger context where LGBTQ+ character death keeps happening.  Over and over again, we watch queer characters die. Again and again, we witness the one surviving queer character grieve while the cis-het characters enjoy happy endings.  Even in the best of circumstances, queer character death is problematic simply because it exists in a world that feels that LGBTQ+ characters – and by extension, real people – do not deserve the same joy as their cis-het counterparts.

Here’s a (spoiler-free) quote from the writer who created the infographic listed above [brackets are my additions]:

Stories exist in imaginary worlds but they are consumed in the real world, where, just this week [March 2016], North Carolina passed sweeping and unprecedented anti-LGBT legislation. And where three presidential candidates don’t believe gay people should have the right to get married [update: neither does the current Vice President]. And where a gay person can be fired simply for being gay in most states [still true]. And where LGBT youth homelessness is rampant [yep]. And where LGBT bullying occurs with alarming regularity in schools [definitely still true].

We need hope in stories. We need light in stories. And we need stories to work their magic in the lives of the people who would oppress and persecute us because we’re gay. Stories are fatal to bigotry.

To care about story isn’t to ignore the darkness of the real world; to care about story is to put your hope in something that changes the real world, more than anything else. There’s a reason all religious texts are made up mostly of stories. There’s a reason the same-sex marriage approval rating in the U.S. rose in direct proportion to the number of gay characters on television. Story gets inside us and changes the alchemy of who we are.

And yet, over and over again we have the same conversation. The same points are hashed out time and time again. It’s frustrating and discouraging. It’s exhausting.

Several years ago I came across an award-winning graphic novel in a bookstore. I had heard of it among recommendations for stories centering same-gender romance, so I picked it up. As I was reading the summary and studying the cover art, a feeling of dread washed over me. I had already had the ‘Bury Your Gays’ conversation more times than I could count.  Over and over again I had let myself become invested in LGBTQ+ characters, only to watch their stories end in tragedy. Again and again I had bemoaned queer character death with (mostly queer) people who understood and (mostly non-queer) people who didn’t. At that moment, I realized that it was not worth putting myself through that again, even for the best of stories.

I flipped to the last few pages of the book, and there she was: one of the main characters, standing alone and sad at the other’s grave.

I closed the book, put it down, and walked away. That has been my pattern ever since. Movie/show/book/comic with queer characters in it? Great. Tell me how it ends.  Still ongoing? I’ll wait. A queer character dies? No thanks.  There are occasional exceptions of course, but for the most part I stick to this rule.  Honestly, I’m so grateful that I’ve done this. Yes, it means that my consumption of LGBTQ+ stories is significantly limited, but to me it’s been worthwhile.

For one thing, I haven’t been blindsided by queer character death in over a decade.  On the rare occasions when I do choose to read or watch a story featuring queer character death, I can brace myself for it. Some people may argue that knowing ruins the story, but if the story doesn’t have an emotional impact without a sudden, unpredicted death of an LGBTQ+ character, then to me it’s not worth investing my time or energy.

At the aforementioned Flame Con panel this weekend, one of the panelists talked about the value in reading or watching stories by creators who value queerness. When queer audiences know or trust that all the queer characters are going to survive, we can relax into a story and become emotionally invested in the characters, enjoying the adventures without the feeling of dread that comes with a queer character whose fate is unclear.

So why, after a weekend of constant affirmation of the value of queer joy in fiction and real life, would I write a long post complaining about queer tragedy?

Two weeks ago, ‘Bury Your Gays’ took me by surprise for the first time in almost a decade.  Without knowing it was going to happen, I saw one queer character die and the other grieve, while all of the cis-het characters in the ensemble cast – including at least four different-gender couples – enjoyed happy endings.

And yes, it hurt just as much as it did all those other times.

*(If you’re curious, Google “bury your gays 2018 backlash.” Also, you’re welcome for the amount of time I spent trying to find a search term that wouldn’t give anything away.)

So yes, I’ve spent the past two weeks having conversations that I had witnessed* but not directly engaged in for several years.  In the midst of this emotional hurricane, I’ve rehashed all the same points with people who feel that this specific instance is different, that under these circumstances queer character death is acceptable.  As usual, arguments on both sides range from calm and productive to hurtful and inflammatory.  Nothing about this situation is new.

*(Look up “bury your gays 2016 controversy”)

This. Keeps. Happening. Again and again we have these conversations. Over and over, queer viewers express anger and disappointment and are told we need to calm down.  We try to defend our right to survive and be happy, and we’re told that we’re over-reacting, that our expectations are unreasonable and it’s our fault for letting them get so high.  We point to the number of fictional queer casualties and are told to be grateful that queer characters exist at all.  We point to the demographics of the characters who are allowed to find joy, and we’re told to accept the story for what it is.

In the past decade, I’ve had this conversation more times than I could count, which is nothing on people who haven’t gone out of their way to avoid queer character death as I have. I can only imagine how they’re feeling.  Because I’m tired.  I am so very tired.

Which is why this weekend could not have come at a better time. Apart from one 3-minute incident from which I was able to extricate myself, Flame Con provided an affirming and invigorating experience in which attendees were told, time and time again, that our existences mattered, that our experiences mattered, that we deserve happiness and joy and we are not wrong to be upset when we are denied that.

Unfortunately, asking for that, even creating it, is a subversive act.  People who write queer stories are counteracting decades (almost a century) of media asserting again and again that queer characters can exist but they cannot be happy. A silly rom-com becomes an act of subversion when the main characters are the same gender; a fluffy teenage comedy with a transgender protagonist is a downright insurrection. Creating these stories, and supporting the people who do, is a political act, an inflammatory statement in a world that does not want to see LGBTQ+ people be happy.  But we do it.  We need it. Because queer people deserve joy too.

Autism Acceptance Month Master Post

April is a difficult month to be autistic. Every day we are bombarded with “awareness” campaigns calling us broken or diseased, spreading misinformation and fear, and promoting abusive practices “for our own good.”

But I talked quite a bit about ableism in my previous post.

Autistic self-advocates are taking back the month of April with a movement called “Autism Acceptance month.”  This year, I participated in autism acceptance by making one post to social media every day about the experiences of autistic people. I’ve compiled them all here.  This is a particularly long one, so I’ve separated and labeled each day for easy scroll-and-skim.  Enjoy!

 

DAY 1: What is Autism Acceptance?

According to the creators of Autism Acceptance: “During Autism Acceptance Month, we focus on sharing positive, respectful, and accurate information about autism and autistic people.

Autism Acceptance Month promotes acceptance and celebration of autistic people as family members, friends, classmates, co-workers, and community members making valuable contributions to our world. Autism is a natural variation of the human experience, and we can all create a world which values, includes, and celebrates all kinds of minds.

 

DAY 2: A$ in a nutshell

Because April 1st was a Sunday, April 2nd was the international “Autism Awareness Day” complete with the campaign to “Light it up blue.” At the school where I work, many teachers and paras wore matching blue T-shirts featuring cartoons of stick-figure children happily playing together, brightly-colored puzzle pieces, and a big yellow caption reading “It’s OK to be different!”

Which would be all well and good without A$’s long history of behaving as if the exact opposite were true.

On that day, I was working with a student in a classroom for young children with complex support needs.  Almost all of the students are paired with a para educator throughout the day.  As I was packing up my materials, I heard a para – who happened to be wearing one of those blue shirts – shout “STOP FLAPPING YOUR HANDS” to the 4-year-old student she was working with.  When I stepped around the divider to intervene, I saw the little boy fixing her with a deadpan expression and hand-flapping freely. I spoke to the para as diplomatically as I could, which perhaps wasn’t the best solution because even by the end of our conversation she still had no idea that she’d done anything wrong.

And that is the trouble with Autism Speaks in a nutshell. It’s okay to be different, except in ways that make neurotypical people feel uncomfortable, or worse: less proud of their openness. In those cases, difference is a problem that needs to be eradicated.

(Side note: I do speech therapy with this student, and we sometimes use movement stims to help him understand and retain the language that we target. It’s been really effective, and he loves coming to speech.)

 

DAY 3: Instead of giving money to A$, consider supporting organizations run by autistic people FOR autistic people.

In America, good examples include the Autistic Self Advocacy Network (ASAN) and the Autism Women’s Network (AWN)*. I’m not sure which organizations and/or charities are best in other countries, but feel free to comment if you know any!

*AWN has now changed their name.  See Day 26.

 

DAY 4: Thank you, ProloQuo!

Proloquo2Go is one of the most well-known communication apps for iOS. This app can turn an iPhone or iPad into a communication device, allowing a nonspeaking person to produce language by touching buttons on a screen.

Although a myriad of Augmentative and Alternative Communication (AAC) apps exist, Proloquo2Go is one of the biggest and widely viewed as one of the best.* Autistic people, many of whom are nonspeaking, form a large portion of their consumer base.

Unlike other companies that develop adaptive tools for autistic people, Proloquo honors Autism Acceptance month instead of Autism Awareness month.  Not only did they offer a sale with the specific word “Acceptance” (no puzzle pieces to be found!), but they also shared an adorable infographic about autism from the Neurodiversity Library.

Also there are more Neurodivergent Narwhals where that came from.  You’re welcome.

*As a speech therapist with an interest in AAC, I find Proloquo to be comprehensive and easy to navigate, but tougher to customize on-the-fly than other AAC apps. Also very expensive. Just in case you wanted to know.

 

DAY 5: What it feels like to be an autistic person of color in the eyes of the police

“I live in a world that fears my skin color and doesn’t want to understand how my brain works.”

In this article on the Daily Beast, Eric Garcia, an autistic person of color, describes his experience fearing police brutality on multiple fronts.

Hearing cops say they hadn’t meant to shoot the black man, but the autistic one, hit close to home. I feel less secure than white people with autism and less secure than my friends of color who are neurotypical.

It’s not surprising, per se, but it’s frustrating and disappointing.

In a way, the police using an autistic person as an alibi makes sense. A recent white paper released by the Ruderman Family Foundation showed that up to half of all people killed by police are disabled and a medical condition or “mental illness” is used to blame victims for their own deaths. On top of that, 80 percent of all cases involving disability are labeled mental illness.

Definitely worth a read.

 

DAY 6: Follow Friday Part 1. Neurodivergent Rebel

Neurodivergent Rebel has a blog with text posts, video posts, and pages of great merchandise on neurodiversity and autism acceptance. Her posts contain a variety of great insights on being autistic in a neurotypical world that insists on consistently misunderstanding us.  Check out her website, Facebook page, or Twitter handle. I have one of her tote bags, and I like it a lot!

 

DAY 7: Identity-first Language

Why “autistic people” instead of “people with autism?” I posted some links last month, but here are some more that explain the issue, and its importance, clearly and beautifully.

A quote from Identity-First Autistic on why language matters:

Because autism – and by extension autistic people, are demonised every day when our neurology is referred to as a sickness or a disease and we are called a burden and a curse…we believe that a positive change in language is the catalyst to a positive change in our thoughts and actions.

Another from ASAN breaking down the difference between PFL and IFL.

When we say “person with autism,” we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word “with” or “has.” Ultimately, what we are saying when we say “person with autism” is that the person would be better off if not Autistic, and that it would have been better if he or she had been born typical. We suppress the individual’s identity as an Autistic person because we are saying that autism is something inherently bad like a disease.

Yet, when we say “Autistic person,” we recognize, affirm, and validate an individual’s identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person — that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual’s potential to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people–and that that’s not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference.

 

DAY 8: ‘All the Weight of Our Dreams: On Living Racialized Autism’

This is an anthology of short narratives, essays, poetry, and artwork by autistic creators of color, discussing the intersection between autism and race in our white neurotypical world. It’s not easy to find in bookstores, but I did find a local independent seller who was willing to order it, and it is worth it! It’s a very powerful read, enough that I’m needing to go through it slowly with frequent breaks, but I am really enjoying it so far.

Also, Autistic people of color are not given enough of a voice in most spaces, and Autism Acceptance needs to work on fixing that. This is a great way to start.

Read more about the book on its website.  You can also follow two of the editors, Lydia X. Z. Brown and Morénike Giwa Onaiwu on Twitter.

 

DAY 9: Autistic Queer Theory 101

Intersectionality in advocacy doesn’t only mean acknowledging that not all autistic people are white; it also means recognizing that not all autistic people are straight and/or cisgender.  This introductory-level article on the Asperger/Autism Network (AANE) goes into it a bit more.

Because someone is diagnosed with an autism spectrum condition does not mean that person is less capable of determining their own sexual orientation or gender identity. It is more likely that family members or professionals will question their identification with these non-mainstream identities because of the autism profile and out of concern that their loved one will be part of yet another marginalized, vulnerable group.

 

DAY 10: On being an autistic woman

On April 9th of this year, Julia Bascom, the executive director of ASAN, made the keynote speech at a UN event on empowering autistic women and girls. Here is a transcript of her address, with some of my favorite quotes listed below.

As a society, we still see autism as a negative, sad, scary thing. But for autistic women, an autism diagnosis can be a tool for empowerment. It’s an answer and an explanation, it’s a way out of cycles of self-blame and guilt, it’s a passport to an entire community, and if we’re lucky, it’s a connection to the understanding, supports, and services we need in order to truly thrive, sometimes for the first time in our life.

Access to diagnosis, however, is still deeply inequitable. Autistic women and girls are diagnosed much less frequently than autistic boys, and we’re often diagnosed later in life, or after we’ve gone through a roulette-wheel of other labels. One of the most common ways for autistic women to get diagnosed, in fact, is after we bring our own children in for assessment. The diagnostic criteria for autism are normed off of 4-year old white boys in upper-middle class families in the US, so anyone who doesn’t fit in that box has an uphill climb.

It’s really powerful and moving.

It shouldn’t be surprising, but the needs and struggles of autistic women and girls are very similar to the needs and struggles of women and girls broadly. We need our voices to be heard and honored. We need access to education and employment, we need access to the tools that empower everyone to be a part of the world and in charge of our own destinies. We need equal pay, not segregated employment and subminimum wages. We need real education–not 40 hours a week of behavioral modification, not compliance training, not forced normalization…My life, in many ways, looks different from that of other women and girls–but in the essentials, it is exactly the same. I deserve that same endless possibility. I deserve that same support. I deserve to be my own best champion. I deserve to be my own sun, my own moon, my own stars. And none of that depends on how well I can make eye contact or how still I can sit or how fluently I can speak. This is my birthright as a woman. Autism shapes what it might look like, but it doesn’t change a single one of my rights.

 

DAY 11: Allyship 101

The truth is most autistic people are brushed away and passed off when the conversation turns to autism – and the megaphone is usually handed to our loved ones and our medical professionals. We need to have a voice and a say in the autism acceptance movement, and in how we’re treated with respect and dignity.

Interested in being an ally to the autistic community? Check out this article on Everyday Feminism for a list of great ways to start.

An accountable ally wants to amplify our voices and make them heard by a larger audience. An accountable ally wants to make sure spaces are accessible to autistic people. They work to respect and center our needs and wants.

An accountable ally is constantly challenging ableism – both other people’s and their own – because they know we’re all part of a system of oppression.

 

DAY 12: AAC and Voice

Augmentative and Alternative Communication (AAC) is a means of communicating without speaking (see Day 6 for an example of one of the biggest developers of iPad-based AAC; for one of the most famous examples of an AAC-user, look up “Stephen Hawking”).  A disproportionately large number of autistic people use AAC to communicate, whether it’s through iPads, picture boards, or something else.  The U.S. Education system is not very good at teaching nonspeaking autistic students, but thanks to the work of people like DJ Savarese, it’s getting better.

AssistiveWare, the company who developed the Proloquo2Go software (See Day 6), wrote a great article on AAC and voice in honor of Autism Acceptance month.

Some AAC users do call #AAC a voice – and you might have seen AssistiveWare using this kind of language too. But nobody can decide for somebody else what their true voice is.  Some people who need AAC don’t have access to it yet. Others can only express a limited range of messages and ideas with their system. Supporting people in these situations to expand their communication is important, but only part of the solution. We also need to work on respecting people for who they are now and learning to listen to the voice they already have.

 

DAY 13: Follow Friday Part 2. ‘Growing Up Aspie’

You can follow this comic writer/artist on Facebook or Twitter.  Most of what he produces are comics, but he does some short videos as well.  I’m a particular fan of “Shame Changer.”

 

 

DAY 14: On Meltdowns and “autism parent” pity-parties

Neurodivergent Rebel wrote a post about parents who post videos to social media of their autistic children having meltdowns.

If you have an autistic or otherwise neurodiverse child, please never EVER do this. These videos create a permanent record of a child without their consent, which could follow them through high school, higher education, and even job applications. Don’t presume your child will never have these opportunities. Don’t assume strangers won’t be able to find these videos, now or in ten years. Don’t pretend to raise “awareness” in order to gain pity for yourself.

Meltdowns are intense, harrowing experiences that make nearly everything impossible. It takes a long time to recover and even longer to rebuild trust in the people who triggered them or made them worse. Do not be those people. Do not tolerate it when your friends or relatives do this to their autistic children.  Do not do this to your autistic child. It doesn’t matter what your intentions are. Just don’t.

 

DAY 15: Simple, everyday things you can do to support your autistic friend/family member/coworker/acquaintance/etc

Credit to Autism Ambassador

 

DAY 16: ‘The Visibly Invisible: Autistic People of Color’

I got it. You had to be tough to be black. There was no crying, no picky eating, none of this I can’t look you in the eye. Humor was a way of toughening yourself up, because the world was going to be tough for us, so if you don’t have a sense of humor now, you had better develop one.

Here’s an article about what it’s like to grow up and exist in our neurotypical society as an autistic woman of color.

Autism is written off not just as a condition affecting white people, but as a behavioral problem, a set of character flaws, stubbornness, and eccentricity bordering on mental illness.

TL;DR: it’s tougher than anyone who is NOT an autistic woman of color can understand.

I have told people  I have autism.  Too many times the reactions are either disbelief or fear.

“There is nothing wrong with you that God can’t fix,” is often the reaction.  Or “I know a little something about that, but you can look me in the eye, unlike my cousin’s child.”  Or worse there is fear.  I feel as if other black people are saying we have failed her, she is not one of us. She is how old and acting like that? Poor girl.

 

DAY 17: Autism and gender diversity

Autistic people are more likely to identify as transgender or non-binary than neurotypical people are. Trans/NB people are more likely to be autistic than cisgender people are. And yet, trans or NB autistic people have to deal with a laundry list of barriers as a result of being both neuro- and gender diverse. Here’s a post with a million references on the topic.

 

DAY 18: Book recs!

Another great way to support autistic people while learning to see the world from a different perspective is to read books by autistic authors.  Here’s a list to get you started.

I particularly recommend:

•  So You Want to Be a Robot by A. Merc Rustad (Science Fiction/Fantasy, Short Stories)
• Ninefox Gambit/The Raven Stratagem by Yoon Ha Lee (SF)
• Queens of Geek by Jen Wilde (Young Adult)
• On the Edge of Gone by Connie Duyvis (YA SF)
• Emergence: Labeled Autistic by Temple Grandin (Memoir).

 

DAY 19: We need to talk about ABA

Hoo boy this was a long one.

Applied Behavior Analysis is a therapy technique that has been used to “treat” autism since around the 1970s, with some precursors in institutions in the 1960s. Basic tenets of the practice include interpreting behavior as a functional response to stimuli, teaching complex tasks step-by-step, and trying to “condition” preferred behaviors using systems of reward and punishment.

As an autistic SLP, I  have  a lot to say on this topic, so please bear with me.

The founder of ABA, Ole Ivar Lovaas, was openly ableist,* homophobic, and transphobic (the subject of that linked article killed himself in 2003). Lovaas described the purpose of his treatment as making autistic people act “normal,” and he was also heavily involved in founding gay conversion therapy, which used similar principles.

Initial ABA practices included cattle-prodding autistic children for stimming or having meltdowns. It should be noted that punishment has not been explicitly banned from ABA, although this particular technique is not used as frequently as it used to be (look up “Judge Rotenberg Center” for more information on that).

Examples of current ABA practices:

• “If you don’t walk on your toes, you get to play outside.”
• Denying children necessary sensory support during a meltdown.
• Giving autistic children treats for making eye-contact, sometimes requiring them to sustain it for longer than 5 seconds.

An initial study showed increased risk of PTSD in people who are exposed to ABA therapy. More research is needed for sure, but the preliminary data is definitely alarming.

That being said, I DO think that, applied individually and holistically to each person, ABA has some principles that can work in teaching neurodiverse AND neurotypical children.  Here are some examples of ABA practices that are NOT ableist and/or potentially damaging:

• “Practice identifying letters three times, then you can play.”
• Looking at antecedent patterns to figure out what causes meltdowns, then avoiding triggers.
• Teaching people with communication difficulties to ask for sensory items or breaks (verbally or using AAC), by granting these requests immediately and praising independent communication in whichever form it takes.

More discussion on the topic here, here, and here.

It should be noted that these articles mainly focus on children. Although children are the ones most frequently exposed to ABA therapy, we need to consider the adults who receive it as well. We also need to listen to autistic adults who went through ABA as children and now have symptoms or full-on diagnoses of PTSD as a result.

There are a lot of questions surrounding the ABA debate that I don’t have the answers to. Like many aspects of society, it’s a mess and there’s no easy fix. It’s yet another result of the widespread belief that autistic people are suffering from a medical disorder rather than people who deserve respect for who we are. I think we can change that without obliterating everything that has anything to do with ABA, but it would mean a huge shift in ABA’s purpose and focus. It would require programs to restructure themselves with input from autistic people. It would alienate a LOT of neurotypical people.

I don’t know how to make this happen. I don’t even know the first steps. But we need to talk about it. So here. Thanks for reading this far.

*Some quotes from a book Lovaas published in 1981, entitled ‘The Me Book:’

With responsibility, the developmentally disabled individual takes on dignity and “acquires” certain basic rights as a person. No one has the right to be taken care of, no matter how retarded he is.

You are the boss, you make the decisions. Almost all persons, including the retarded and especially the autistic and emotionally disturbed, want it differently. Sometimes they will become so angry that they act out aggressively against themselves, the furniture, or you…Or they will withdraw and make you feel guilty. They may try to frighten you into quitting. Don’t let them do that because it will hurt them in the long run. They have no right to act bizarrely, many professional opinions notwithstanding…If you work hard for your child, he should be grateful, work hard, and show affection to you in return. You have to teach him that.

Some quotes from an interview Lovaas gave in 1974:

whatever you call them, you have a severely disturbed child with a lot of very bizarre behavior.

They have tantrums, and believe me they are monsters, little monsters.

I just reached over and cracked her one right on the rear. She was a big fat girl so I had an easy target…I felt guilty, but I felt great. Then she hit herself again and I really laid it on her. You see, by then I knew that she could inhibit it, and that she would inhibit it if she knew I would hit her. So I let her know that there was no question in my mind that I was going to kill her if she hit herself once more, and that was pretty much it.

We used electric shock and spanking as punishment. The procedure was simple — we just set up a contingent punishment for self-mutilative behavior…We stay close to them and when they hurt themselves we scream “no” as loud as we can and we look furious and at the same time we shock them.

DAY 20: Follow Friday Part 3. ‘It’s an Autism Thing – I’ll Help You Understand It’

Another person to follow on Facebook and/or Twitter is Emma Dalmayne, who wrote a book entitled “It’s an Autism Thing…I’ll Help You Understand It.”  Unlike the overwhelming majority of resources out there for “autism parents,” this book comes from an autistic parent of neurodiverse children, so she is able to offer valuable advice and insight from multiple perspectives.

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DAY 21: What is stimming and why do autistic people do it?

Stimming, short for self-stimulating behavior, refers to anything that is done solely for sensory input.  Among autistic people, hand-flapping and vocalizing in a non-communicative way are the most widely-known, but stimming can take a variety of forms, and it’s not just autistic people who do it!  Stimming can release tension or excess energy, calm someone who is anxious or agitated, or help them concentrate on a task.

In 2016, The Mighty surveyed autistic people about why they stim and what it feels like.

Unfortunately, not everyone has always seen stimming as natural or necessary. Here’s powerful piece from an autistic blogger on why ‘quiet hands’ – a phrase that ABA practitioners use to stop autistic children from stimming with their hands – is so damaging.  And here’s another one dismantling the concept of ‘socially appropriate’ as it relates to stimming.

Lastly, (I love this one) here’s a journal article  from MUSICulture called “The Musicality of Stimming.”  It talks about music, ethnography, and why letting autistic people experience sensations in their own way is vital to their emotional well-being.  It even comes with cute anecdotes!

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DAY 22: #AskingAutistics

Have a question about autism? Want to learn more from autistic people? Check out the #AskingAutistics hashtag on Twitter. You can read what’s already there or post your own questions. (I strongly suggest you do the former before you do the latter.)  It’s a great way to learn about autism from people who have lived it.

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DAY 23: Making queer spaces autism-friendly 

Ableism gets in the way of my access to the queer community and in turn makes me less proud to be part of that community. While I feel comfortable in autistic spaces, I do not always feel visible and affirmed as a queer, nonbinary person. I am always dividing myself into fractions in order to be socially accepted; I can never show up as my full queer, autistic self.

I do not exist as a fraction, and I cannot extricate my queerness from my autism. Queerness and autism are both marginalized identities that make navigating society difficult; thus, I crave companionship and solidarity in both communities. In order to do this, I need queer spaces that are more accessible to autistic people.

Chrysanthe Tan wrote a great article on the difficulties of finding accessible social spaces as a queer autistic person.  They included a list of great tips for queer people looking to make their spaces more autism-friendly.

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DAY 24: Processing…processing…

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“Processing” is what our brains do with new information.  When someone says something to us, we interpret the words, hold the concepts in our immediate memory, figure out the implications, decide which information needs to be stored for later, and identify an appropriate response.  This is processing. Most of the time, we do it all in a tiny fraction of a second. For autistic people, it can take a bit longer.

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In this article from the National Autistic Society in the UK, several autistic people and parents of autistic people describe what it’s like to interact with a neurotypical world despite processing delays.  They talk about what helps and what really, really doesn’t.  It’s a great read, but I know that I’m linking a million articles in this one post, so here are some highlights:

• Don’t bombard an autistic person (or non-autistic person with processing difficulties) with tons of information at once. That can get frustrating and overwhelming.
• Ask your question or present your information, then wait, even if the person doesn’t respond right away. Your instinct might tell you “they didn’t hear me – I should repeat myself” or “they didn’t understand – I should explain more.” This is likely not true, even counterproductive.  The best thing you can do is wait.
• Don’t follow a question with another question if you haven’t gotten an answer to the first one. “How are you? How have you been? Did you do anything exciting recently? See any good movies?  How about [recent movie]? Did you see that one?” As an autistic person, I can promise that if you do this to me, by the time you reach question 3 or 4, I’m no longer even trying to process what you say.  I’m just planning my exit strategy.
• Prompts or pressure to make decisions quickly can be counterproductive and stressful for people who have processing delays.  In extreme cases, they can cause a shutdown or meltdown. If you need a quick decision, better strategies for an autistic person are to reduce pressure and background noise while providing visual aid for choices. Informing the person of the need for an immediate decision at the time that you present the choices is not going to end well for anyone.
• Be aware that an autistic person may have trouble hearing and understanding you in noisy environments.  Funny story: I used to think I had mild hearing loss, because it’s very difficult for me to understand people in spaces with lots of background noise. I was actually surprised when my hearing test fell within normal limits.  Then I read about and talked to other autistic people (see Day 22), many of whom had experienced the same thing!
• Respect an autistic person’s need to protect themselves from loud noises. For some, noisy environments aren’t just annoying; they’re overwhelming.  Same with sudden, loud, or high-pitched sounds.  The person may need to leave the space or wear sound-suppressors due to auditory sensitivity.
• Big, stressful, or emotional decisions may take days to process. Even non-autistic people sometimes need extra time to make big life decisions such as moving in with a significant other, accepting a job offer, or having children. For a person with processing difficulties, this may apply to any decision that carries weight.

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DAY 25: CDC report on the prevalence of autism

The Centers for Disease Control recently released a report on the prevalence of autism in children in certain areas of the U.S.  According to this report, 1 in 59 eight-year-old children in these communities has a diagnosis of autism (roughly 1.7%). This is an increase from reports conducted in previous years.

In The Autistic Self-Advocacy Network released a statement that addressed some limitations with the CDC’s methodology (examples: small sample size, limiting the survey to children) and positive changes in the data (for example: more girls and children of color are being identified than before).

Among the autistic community, people are mainly relieved that people who were not being diagnosed before are now having access to necessary supports at a younger age, attributing this increase to a better understanding of autism.

In other spaces, media outlets and certain organizations are using this information to promote fear of autism, mostly for the purpose of increased publicity.  I’m not linking to examples here.  They’re easy enough to find if you want to see them.

 

DAY 26: Autistic Women & Non-Binary Nework

The Autism Women’s Network (See Day 3) is officially changing its name to Autistic Women & Non-Binary Network. It’s always great to see advocacy organizations taking steps toward intersectionality and inclusion. Also, I admit, I’m kind of enjoying the trend where organizations that originally established themselves as “for women” redefine themselves as “for everyone except cis men.”

 

DAY 27: Follow Friday part 4. Ada Hoffmann.

Ada Hoffman is an autistic writer, poet, blogger, and book-reviewer who has a lot of fantastic things to say about the portrayal of autism in fiction. Her book recommendations have been extremely helpful to me, and I’m currently on the lookout for HER book, Monsters in My Mind. (No luck so far.) She’s also the one who wrote that mind-blowingly good article about emotional labor and autism. Check out her website and/or her Twitter account.

 

DAY 28: Favorite canon and headcanon autistic characters 

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“Canon” means something is explicitly stated in a book/comic/TV show/movie (e.g. “Commander Spock is half-human, half-vulcan”), and “headcanon” refers to something that fans interpret without actual confirmation from the creators, though there may be evidence to support it (e.g. “Commander Spock is in love with Captain Kirk”).

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The importance of headcanons for people with marginalized identities is an important topic for another time.

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I’ve made a list of my top 10 favorite autistic characters, using a mix of canon and headcanon.

1. Abed Nadir from Community (TV show). He’s far and away my favorite of the bunch. Everyone else is listed in a sort of random order.
2. Denise from On the Edge of Gone by Connie Duyvis (book)
3. Dr. Julian Bashir from Star Trek: Deep Space Nine (TV show)
4. Lunella Lafayette from Moon Girl and Devil Dinosaur (comics)
5. Tesla from “How to Become a Robot in 12 Easy Steps” (short story)
6. Lisbeth Salander from The Millennium Trilogy by Stieg Larsson (books)
7. Alternate Astrid from Fringe (TV show)
8. Keith from Voltron: Legendary Defender (cartoon)
9. Maurice Moss from The IT Crowd (TV show)
10. Carlos the Scientist from “Welcome to Night Vale” (podcast)

 

DAY 29: Special Interests

In my favorite writing class in college, we spent a day talking about obsessions, what they were and how they could be an asset to writing. College was really the first time I had the opportunity to see special interests as a source of strength and pride rather than shame. Now as a therapist, I use them with my students all the time, as motivators or topics or teaching tools. Special interests are strengths and we should play to them.  Here’s a whole article on special interests and autism.

 

DAY 30: For more information…

I’ve been throwing a lot of articles and information into the social media abyss this past month. I know that at least a few people found it interesting, and some learned a thing or two. I hope I’ve made a positive difference. Because there are still people out there who are afraid of people like me, who pity our families for “putting up” with us, call on abusive practices to force us to change who we are, and celebrate the prospect of an autism “cure.” And probably worse.

I’m leaving this one last article for the rest of you. It’s a page of links to MORE pages of links with information about autism, advocacy, and disability (even more pages of links can be found under “resources” on the red menu bar). I hope you enjoy it, or at least find it useful in some way.

 

Happy Autism Acceptance month, everyone.

Love is Love is Not an Excuse

Even when we aren’t marching with Tiki Torches and shouting “JEWS WILL NOT REPLACE US,” white people have a natural talent for racial bias.  So natural, in fact, that most of us regularly contribute to discrimination and erasure of people of color (POC) without realizing it.

The LGBTQ+ community is no exception.  In our struggle for rights and acceptance, we have an unfortunate tendency to ignore queer people of color (QPOC). Take, for example, the Stonewall riots: widely seen as a turning point in the struggle for gay rights in America (less so for trans* rights, unfortunately).  These riots, although instigated by trans women of color, launched a movement that benefitted white cisgender gay people disproportionately to the rest of the queer community. The 2015 movie about the Stonewall riots even created a fictional character just so the protagonist could be a cisgender white man instead of the real-life Marsha P. Johnson and/or Silvia Rivera.

We white people have been socialized, through a system of racial oppression, to see ourselves as the “default” and to center ourselves in situations that are not about us.  I am not saying that white queer people (WQP) do not face real difficulties with discrimination and violence, rather that QPOC experience a uniquely difficult struggle as a result of their intersecting marginalized identities.  See this, this, this, this, this, and this article for more information.

When the Pulse shooting happened last year, WQP yet again overlooked the experiences of QPOC as we processed our grief and rage and fear.  I own my contribution to this; I and many of my white queer friends initially failed to acknowledge that the majority of victims were people of color and that Hispanic/Latinx and black communities were hit harder than we were.  It took some reading, a few difficult conversations, and a lot of introspection for me to understand that by claiming the event as “the gay 9/11” and by centering my feelings of victimhood, I was effectively ignoring QPOC.

Which is why today, I want to talk about the comic Love is Love.

For anyone who doesn’t know, Love is Love is a 144-page comic anthology co-published by DC Comics and IDW in December of 2016, in order to raise money for survivors, families, and victims of the Pulse Shooting. It features 1-2 page comics and spreads depicting the rage, grief, fear, and ultimately hope within the LGBTQ+ and ally communities in response to the event.

You might ask what this anthology has to do with QPOC erasure.  Look at the racial diversity represented on the cover! Unfortunately, the cover doesn’t mean much once you realize that white men are over-represented on the list of writers and artists, while people of color are grossly under-represented. In fact, despite 300+ creators contributing to the project, Love is Love features the work of exactly one black woman.  For perspective: two of the Pulse shooting’s 49 victims were black women; three were white men.

At an LGBTQ+ comics convention in Brooklyn, New York, I attended a panel called “Love is Love: One Year Later,” featuring a small group of contributors, half of whom were white men. Marc Andreyko, the project’s originator and main organizer, moderated the panel. He was understandably proud of the anthology’s success; although meant to be a one-time event, Love is Love has gone through several re-printings, distributed more than 100,000 copies, and will soon be released for publication in several foreign countries. Given that 100% of the initial proceeds went to people who were affected by the Pulse shootings – with proceeds of later publications slated to benefit LGBTQ+ charities such as The Trevor Project – this is undeniably a good thing.

Which is likely why Andreyko was so thrown off when the first two questions from the audience called him out on the lack of POC contributors.

The resulting discussion consisted of several familiar justifications, from Andreyko as well as contributor Phil Jimenez (who himself is a QPOC):

• You’re wrong.
• How do you know they were white?
• No seriously, how do you know?
• We used white male contributors because we wanted this project to sell.
• We reached out to as many people as we knew.
• Not everyone we contacted was able to submit something by the deadline.
• We didn’t intentionally exclude people of color.

Andreyko did later walk back a few of these comments, acknowledging the problematic lack of diversity on the contributor list and pledging to do better in future anthologies.  (Side note: apparently a five-year anniversary edition is in the works, and Andreyko promises to include more QPOC creators.)

Not all of these excuses were completely false; the comic publishing industry has been consistently dominated by white men. By limiting the project to people who were well-known, easy for white men within the industry to reach, and/or able to temporarily drop what they were doing to create a contribution without being paid for it, the organizers unconsciously favored white men, whose privilege allows them to be over-represented among people who fit those criteria.

White people who are committed to racial equality need to understand that it is not enough to be “color-blind” or to ignore race as a factor. In projects such as Love is Love, white people in a position of privilege need to actively reach out to people of color, directly counteracting the systemic disadvantages that POC face. We so naturally default to white centrism that anything that does not actively work to include POC unintentionally shuts them out. (And that’s not even considering the issue of tokenism.)

The conversation was not going well until Tee Franklin, the only black woman on the panel (the entire project, in fact) spoke up.  (Jimenez appeared stunned to learn that Franklin was the only black woman contributor.)  Franklin described her experience as the “token black woman” in Love is Love.  She talked about queer black women and girls who had approached her to say that her contribution was the only place where they saw themselves represented. She pointed out that not only do databases of creators of color exist, so do anthologies of their work.  There’s even a database where people can search for queer creators of color.

Andreyko seemed increasingly receptive to what Franklin was saying, and by the end of the discussion he appeared willing to take action to include more queer creators of color in future projects.  My girlfriend and I were visiting Tee Franklin’s display after the panel, and Andreyko actually approached her while we were there.  He looked through one of the anthologies she had mentioned and eventually gave her his contact information so that they could work together on future POC-inclusive projects.  As someone outside the comic publishing industry, I can only hope that positive change comes from this.

A recurring theme at this convention was the importance of diversity, intersectionality, and representation in the media.  Representation matters, I heard time and time again. The Love is Love panel attempted to put that mantra into action, by calling out a project whose representation was lacking. I’m sad that it took almost a year for this issue to be brought to the organizers’ attention, and I’m equally sad that Tee Franklin is receiving backlash for speaking out about it. WQP (and allies) need to start doing better by QPOC, and this is just one of the many ways we can do it.

So what can you do?  Here are a few ideas:

• Watch a video of the panel on Facebook. Show your support for Tee Franklin and other QPOC by liking or sharing it.
• Educate yourself on the struggles that QPOC face. As I’ve said in previous entries, it’s long past time for white people to listen to marginalized voices.
• Include QPOC in your conversations about LGBTQ+ issues.  Do you know how many trans women of color were killed in 2016? 2017? The past 48 hours? Do your friends and family know? Do not let another conversation about the Pulse shooting finish without someone mentioning the queer Latinx and black communities. Keep pushing when your white friends and families try to ignore or dismiss the issue. Be that person.
• Show your support for Tee Franklin on Twitter and/or by pre-ordering her book Bingo Love. I’ve read the preview, and it looks fantastic!
• Support queer creators of color by actively seeking out their projects.  I listed some ideas in a previous entry about prose books by authors of color, and there are plenty of other resources out there for finding books and comics by queer creators of color.
• Let Marc Andreyko know that you hope future projects similar to Love is Love will be more inclusive of queer creators of color.
• Buy and read Love is Love. Yes, it’s problematic, but it’s also a wonderful project for an excellent cause. We can acknowledge its racial bias while enjoying and supporting it for the good that it does.  Just make sure that when you discuss the book, you acknowledge the experience of QPOC and creators who were excluded. Do the work to make your corner of the LGBTQ+ movement inclusive, intersectional, and representative.

Books by people of color: A rec list

In early 2016 I realized that the overwhelming majority of books I had read were written by white authors. It was one of those “duh” moments that formulated my privileged-white-person-becoming-aware-of-pervasive-systemic-racism process.  To some extent, I blame American public schools, the media, and the publishing industry, but the bottom line is that I had neglected to examine all of the ways that white supremacy has seeped into the cracks and seams of my life.  So, I made a resolution to only read books by authors of color for a year.

I highly recommend that other white readers do this: if not a full year of avoiding white authors, then a close examination of the diversity of the authors you’ve read and conscious effort to expand it.  I’ve said it before and I’ll say it again: listening to people of color has never been more important than it is now.

I’ve created a list of some of my favorites.  I did my best to include a variety of genres, but there are definite trends.

Feel free to add your recs if you have any!

Nonfiction – Essays

Bad Feminist by Roxane Gay

This is a collection of thoughtful, well-written, and occasionally hilarious essays on gender, race, sexuality, body type, higher education, and Scrabble. Anything by Roxane Gay is worth a read (I’m currently reading Difficult Women, which I love so far), and this award-winning bestseller is a fantastic place to start.

Ijeoma Oluo’s articles

Okay, you caught me. Two items on this list aren’t physical books. To my knowledge, Oluo hasn’t published anything off the internet (except for the Badass Feminist Coloring Book, which I discovered while researching her and will be placing on my wish list right…now.) Nonetheless, her writing is too important to exclude, especially now.  I specifically recommend “Welcome to the Anti-Racism Movement” and “When a Woman Deletes a Man’s Comment Online.”

Nonfiction – History

God’s Crucible: Islam and the Making of Europe, 570-1215 by David Levering Lewis

This one was obviously written for people who either read about history for a living or want to read about history for a living. I am not one of those people. Still, it was worth pushing through the dense material in order to see a perspective on Medieval Europe that we never got in my overwhelmingly-white American public school.

Nonfiction – Memoir

The Other Side of Paradise by Staceyann Chin

Staceyann Chin, a lesbian speaker and activist from Jamaica, describes her childhood, biracial identity, adolescence, coming-out, and emigration to the United States.  Her story is emotional, charming, and powerful, and the audiobook – which she narrates – absolutely blew me away.

Dreams From My Father by Barack Obama

This memoir was published long before Obama ran for president, and it beautifully outlines the way that his biracial identity and early activism uncovered complex issues about American race relations.

Invisible Man, Got the Whole World Watching by Mychal Denzel Smith

I think, at a minimum, every American needs to read or listen to this book. Smith uses his life experience to illustrate hard and complicated truths, not just about the experience of black men in America but also the experiences of women, LGBTQ+ people, people with mental illness, and people with multiple marginalizing identities. There’s an audiobook narrated by actor Kevin R. Free, and it is phenomenal.

Just Mercy by Bryan Stevenson

A lawyer in Alabama who started a non-profit organization to provide legal counsel for Death Row prisoners – among a myriad of other things – Stevenson uses tragic and horrifying case examples to highlight the cruelty and racism in the American criminal justice system. This is another book that all Americans – especially white Americans and/or people who feel complacent with our justice system – need to read or listen to. (Stevenson reads the audiobook.)

Fiction – Non-speculative

Trumpet by Jackie Kay

A famous jazz musician dies, and his death reveals to the world that he was transgender in an age when trans* issues were even more poorly-understood than they are today. The book uses alternating points of view between between the late musician’s wife, adult son, and people with varying degrees of involvement in his life in order to weave a tragic and heartwarming story.

Burnt Shadows by Kamala Shamsie

I’ve loved everything I’ve read by Kamala Shamsie (see also: In the City by the Sea, Kartography), but this one is my favorite. It follows a survivor of the atomic bomb in Nagasaki as she transitions from houseguest in a British home in Delhi, to refugee in Pakistan, to wife and mother in Karachi, to elderly woman watching New York City struggling to recover after 9/11.  There is love and tragedy and destruction and the sense that everything is endless and cyclical.

(Kamala Shamsie is my former creative writing professor, which is how I found out about her. I wish she were better-known because she is a fantastic writer with important things to say, especially about politics in the Middle East and the USA.)

Love Medicine by Louise Erdrich

Tragic and complex and layered, this series of interconnected anecdotes centers on two Native American families living on a reservation in North Dakota.  The book meanders between time period and point-of-view as aimlessly as many of its characters wander through life.  Several of Erdich’s other books are on my to-read list.

A Pale View of Hills by Kazuo Ishiguro

This is a good one for people who like unreliable narrators and hazy, ambiguous non-solutions to mysteries (I’m told that many of Ishiguro’s books are like that, so check him out if that’s your thing).  Slightly creepy, it’s a beautifully written study of mothers and daughters in post-WWII Japan and beyond.

Guapa by Saleem Haddad

A man in an unnamed Arab country narrates the 24 hours of his life after his grandmother discovers him and his boyfriend in bed together.  As he attempts – and fails – to go about a normal day, we see commentary on politics, society (Arab and Western), marginalization, and family secrets, all through the eyes of a traumatized man trying to redefine himself in a world that consistently fails to understand him.

Fiction – Spectulative (Sci Fi/Fantasy/Magical Realism)

Parable of the Sower/Parable of the Talents by Octavia Butler

Anything by Octavia Butler is necessary reading (I read and loved Kindred, and the rest of her books are on my to-read list). She was woke before most white people knew woke was a thing, and she used sci fi/fantasy to illuminate difficult truths about racism, sexism, and classism in America. These two books, about a new religion fighting to emerge in a harsh, dystopian America, are beautiful, tragic, and surprisingly prophetic.  The second book in particular has some frightening parallels to our current political environment.

The Fifth Season/The Obelisk Gate by N.K. Jemisin

The first two books in what is so far an incomplete series, these novels represent epic fantasy at its finest.  My words can’t do them justice, except to say that Jemisin 110% deserved the Hugo award she earned for the first book.  She is another author with several books on my “to-read” list. The audio books, read by Robin Miles, are also mind-blowingly good.

Saving Fish From Drowning by Amy Tan

Most people know Amy Tan from The Joy Luck Club, though I actually enjoyed this one more. This book fits the “magical realism” genre because the narrator is speaking to us not long after her tragic and sudden death, describing a group tour through China and Myanmar that goes horribly wrong in part because she isn’t alive to lead it. The Bonesetter’s Daughter is also a good real-world-fantasy book.

Infomacracy by Malka Older

In the somewhat-distant future, our political, social, corporate, and globalization systems will have undergone some massive changes. Two parts political thriller, one part biting social commentary, this book (the first in a yet-incomplete series) holds up a funhouse mirror to politics, capitalism, and the information age, showing us a caricature of where we could be headed.

Fiction – Young Adult

Akata Witch by Neddi Okorafor

I highly recommend this book to anyone who enjoyed the Harry Potter series. There is magic, detailed world-building, compelling friendships, and an emphasis on standing up for what you believe in, even when it’s hard, even when it’s terrifying, and even when you have virtually no idea what you’re doing.  (I also enjoyed Lagoon and Binti.)

The Absolutely True Story of a Part-Time Indian by Sherman Alexie

Think Diary of a Wimpy Kid only far more profound and compelling, with an added focus on disability, segregation, poverty, death, and injustice to Indigenous people. At the same time, it somehow manages to be uplifting and occasionally hilarious. I fell head-over-heels for the protagonist and was genuinely upset when the story ended.

Wonder by R.J. Palacio

Another disabled-underdog protagonist with a sharp voice and compelling fish-out-of-water story; simply subtract the illustrations and add alternating points-of-view to create a more comprehensive look at this character’s life.

(If you liked one of the above two books, chances are good that you’ll like the other. Obviously, I highly recommend both.)

Shadowshaper by Daniel Older

This urban fantasy condemns police brutality, white supremacy, cultural appropriation, and gentrification. The magic is fascinating, the world-building complex, the story twisting and mysterious.  The audiobook, narrated by Anika Noni Rose, is phenomenal to the point where I would almost recommend that over the written version.  Her performance adds life and depth to the characters, sweeping you along with every step of the plot.

If You Could be Mine by Sarah Farzian

A teenage girl in Iran is in love with her (female) best friend, in a country where being gay is a crime but being transgender is not. This book uses the forbidden-queer-teenage-love story (see also: Finlater by Shawn Stewart Ruff) to explore issues of sexuality and gender identity in a way that is thoughtful, sad, and surprisingly uplifting at the same time.

Short Stories

Happiness, Like Water by Chinelo Okparanta

A series of moving and beautifully written short stories about Nigerian women of different ages, classes, and sexualities.  I also enjoyed Under the Udala Trees, which is a full-length novel about a gay woman growing up in 60s/70s Nigeria.

Going to Meet the Man by James Baldwin

Yet another fantastic author who has produced a bunch of excellent works, Baldwin is particularly focused on the intersection between the black male identity and the queer identity in America.

Karma and Other Stories by Rishi Reddi

I actually read this series of somewhat-interconnected stories a few years ago. Each story depicts Indian American culture in a different way, presenting the different struggles, losses, and successes that Indian people of multiple generations face in America.

The Water that Falls on You from Nowhere by John Chu

This one is actually a single short story, rather than a collection.  It’s available to read for free here at Tor.com, so I’ll let the story speak for itself. Check it out!

Honorable mentions: 

(books and authors I enjoyed but didn’t include because I had to cap this list somewhere)

Nonfiction: A Long Walk to Freedom by Nelson Mandela

Non-speculative Fiction: The Namesake by Jhumpa Lahiri, The Color Purple by Alice Walker.

Speculative Fiction: Redemption in Indigo by Karen Lord, The Goddess Chronicle by Natsuo Kirino,  The Between by Tananarive Due.

Young Adult: Waters Between by Joseph Bruchac, Labyrinth Lost by Zoraida Cordova.

Short Stories: Let the Dead Bury Their Dead by Randall Kenan, The Unaccustomed Earth by Jhumpa Lahiri

Other authors to check out: Isabel Allende, John Chu, Toni Morrison, Gene Luen Yang, Malinda Lo, Salman Rushdie.

Authors I haven’t read but I’ve heard good things about from multiple and/or reliable sources: Shamim Sarif, Audre Lourde, Ta-Nehisi Coates, Junot Diaz, Nalo Hopkinson, Gabby Rivera, Zadie Smith, Manil Suri.

SUGGESTIONS FROM OTHER PEOPLE AFTER I POSTED THIS:

• Birth of a Dark Nation by Rashid Darden
• The Moon was Ours by Anna-Marie McLemore
• This comprehensive list of Science Fiction by black authors

Beyond the Women’s March: A PSA for fellow white people

Between 2014 and 2016, I attended several protests and rallies in Boston responding to the deaths of Michael Brown, Eric Garner, Alton Sterling, Philando Castile, and the non-indictments of the officers who had killed them.  Although I didn’t keep a diligent count of the demographics, it did not escape my attention that visibly fewer than half of attendees were white, more than half of white attendees were women, and more than half of white people at these events presented as queer in an obvious way.

So it seems that, despite their abundance, cisgender, heterosexual, white people – especially men – are a rarity at Black Lives Matter events in Boston.

But the few cis-het white men who did show up? Wow, did they enjoy leading chants.

In the proximity of a cis-het white man, we rarely if ever experienced more than a few seconds of relative quiet without him bellowing a chant and expecting the crowd to follow along.  Cis-het white women were similar.  Often, chants initiated by white people would interrupt and ultimately drown out a chant led by people of color.

This is a problem.

It’s a problem that we white people didn’t show up when the Black Lives Matter movement needed us, and it’s a problem that those of us who did felt that our voices needed to be heard more than others.

Why?  First: Black Lives Matter exists because white people have systemically ignored black voices for a very long time. We do nothing to help the cause if we show up only to speak over them yet again.

Second: chants led by people of color were different from chants led by white people.  White people raged against racist police; people of color decried white supremacy and a corrupt system. That difference matters.

Then there were the white people who happily joined or started chants that we have no business shouting, such as “I can’t breathe” (yes we can – we aren’t the ones that systemic racism is oppressing) or “Whose streets? Our streets!” (Yes, they are our streets. That’s the problem!).

All this to say, the few cis-het white people who do show up for Black Lives Matter consistently fail to listen to the voices we are trying to support. 

Which brings me to the the Women’s March.

Anyone who hasn’t avoided the news for the past several weeks has likely heard about the overwhelmingly-well-attended Women’s Marches around the world on January 21st.  News sources disagree on how many people attended, but minimal estimates count millions of people at marches in all 50 US states, at least 60 countries and all seven continents. Everyone except Sean Spicer seems to agree that the D.C. Women’s March alone was better-attended than Trump’s inauguration.

This fact on its own is fantastic. My girlfriend and I attended the Boston march with some friends and the experience was powerful and moving.

Unfortunately, after the march I heard and read too many stories about black women, indigenous women, Muslim women, disabled women, and trans* people being ignored or outright disrespected by well-meaning white marchers. So there’s a few issues that we white people need to address before we become too complacent about our role in improving the world.

First:

Congratulating ourselves on organizing a protest that resulted in zero arrests. 

Again, this is an objectively good thing.  Peaceful protests are meant to be exactly that, and the fact that organizers managed to keep all events free of rioting or aggression is a feat to be commended.

That said, we as white people can’t take all the credit for this.  In the days following the march, I witnessed a trend of self-congratulatory posts gradually evolving into white people wondering why, if we managed it, the BLM and No DAPL protestors couldn’t avoid violence.  Why couldn’t they just do what we did?

This is where white people need to stop and check our privilege.

At every BLM protest in Boston, I saw long lines of mostly-white-cis-het-men police officers standing shoulder-to-shoulder, staring straight ahead with blank expressions, occasionally resting their hands on their guns.  Full riot gear was rare in Boston, but I did see it from time to time. As instructed by march organizers, we ignored the police and kept to our route, but the tension was palpable.

At the Women’s March, the atmosphere was completely different. Police officers still lined the route, but they were visibly more relaxed than any of the officers I saw at BLM events.  Many of the officers at the Women’s March were smiling. Some made eye-contact with people in the crowd and nodded. One or two even cheered.  I didn’t personally witness this, but there are videos of police high-fiving marchers in other cities.  I saw no riot gear in Boston. No officer’s hand was anywhere near a gun.

It is unfair for white people to claim credit for the difference in police response to the Women’s March.  Many of the marches changed their routes at the last minute (which they are not supposed to do), and at Boston alone I saw tons of people ignoring requests that the police had made before the march: holding signs with wooden pickets, wearing backpacks, and carrying bags that were not at all transparent.  Meanwhile, BLM marches in Boston showed zero threat of violence on the part of the marchers, no weapons, and no engagement with the police.  Like the Women’s March, BLM events had volunteers specifically present to make sure that attendees followed all of the rules.

In short: the palpable difference in how the police treated us had nothing to do with attendees’ behavior.

Police felt more comfortable with the Women’s Marches because they consisted primarily of cisgender-heterosexual-white women. People of color and LGBTQ+ people were present, yes, but cis-het white women were the clear majority, and this prevalence put the police at ease.  White women are not a threat.  White women are “on their side.” Events consisting primarily of people of color marching for their lives feel more threatening to the police, and as a result they are treated differently.

So think twice before you say something smug, comparing the Women’s March to the BLM or NoDAPL movements. Acknowledge your privilege and the role that it played. Sit with that. Process it. Feel uncomfortable with it.

Then use your privilege for good.

How do we do that? The obvious answer is to attend more events supporting people of color. I have frequently seen or heard people of color asking: “Where were all of you when we marched for Freddie Gray, Tamir Rice, Trayvon Martin, Sandra Bland, Michael Brown…(etc)?”

In general, we weren’t there, but we can change that. We can attend protests and rallies supporting people of color, Muslims, refugees, and indigenous people. We can show up for marginalized people and pester our friends into joining us, and it will do these marches good. The increased presence of white people – especially cisgender-heterosexual-women, will likely help the police to feel less threatened. It’s sad, it’s uncomfortable, but it’s true.

Walk on the edge of the crowd, where you will be most visible.  See a woman of color holding a particularly contentious sign? Walk near her. Watch her back.

I did not come up with these suggestions, by the way; women of color have been saying all this since before the Women’s Marches took place.

Can’t show up physically? Research other ways to support people of color and their causes, whether by donating money, spreading the word, or doing something else that these movements are asking for. The Women’s March is a perfect example of how white feminists need to improve at listening to and supporting  people who are marginalized in other ways.

Which brings me to my next issue:

Ignoring the needs and struggles of trans* people.

(I’m using “trans*” as an umbrella term for trans men, trans women, and everyone who identifies as gender non-binary.  I did not invent this term.)

Although Boston’s pre-march program made a fantastic effort to include women of color and disabled women, at most a few cursory mentions were made to trans* people.

Worse, many marchers’ signs mentioned “uterus,” “ovaries,” and other reproductive anatomy that cisgender women often mistakenly assign to all – and exclusively – women.  After the march, I heard and read responses from trans* people saying that these signs and slogans made them feel invisible, excluded, even dysmorphic.

Simply saying “trans women are women” helps no one if we’re going to exclude trans* people from our actions. Already we’re ignoring trans men and non-binary people when we claim abortion as a “woman’s right,” but using “uterus” or “ovaries” as a stand-in for “women” excludes trans women from the conversation.  Trans* people are already fighting for recognition, inclusion, and safety in a country that is openly hostile to them, and for many people losing Planned Parenthood means losing access to vitally important hormone therapy.  It’s unfair and counterproductive for cisgender women feminists to exclude trans* people from our cause, but unfortunately it seems to happen unintentionally.

So how do we counter it? Again, I have a solution presented to me by a person who was directly affected; I cannot overstate how important it is for white feminists to listen to marginalized groups.

Instead of focusing on reproductive rights specifically, lets fight for body autonomy for all.  Let’s acknowledge the services that Planned Parenthood provides to trans* people. “My body, my choice/their body their choice” does not need to specify cisgender women. It can include trans men and non-binary people who need abortions and birth control. It can include trans women who need access to hormones. We can protest Trump’s open and unapologetic history of sexual assault without implying that only cisgender women are ever assaulted.

Beyond that, lets show up for trans* people when they need us.  There’s plenty to do, especially now.  If you live in a state where trans* students could be affected by Trump’s withdrawal of trans rights from Title IX, find out what you can do to fight back.  If you live in a progressive state with its own anti-discrimination policies, research ways to support trans* people who need help.  This article is a great place to start.

Speaking of extra work, issue #3:

Potentially quitting activism after the March “high” wears off.

I’m thrilled to see people still involved in activism more than a month after the march, but this is a problem that we as white people need to keep in mind over the next four years. Non-marginalized groups tend to lose interest in civil rights movements more quickly than marginalized groups do. White people get fired up on issues, sure, but we tend to spring into action one day and then return to our regular lives the next.

As a gay, cisgender, white, able-bodied, middle-class woman with chronic health problems in Massachusetts, I am protected by state law in the ways that my disadvantages might affect me.  My privileges take care of the rest.  I, like many people, have the ability to stop paying attention to issues that deeply affect minorities across the country.

But we can’t let that happen this time.  There’s too much at stake.

How do we counter this?

1. Stay informed. Follow reputable news sites and fact-check everything you hear or read.  Listen.
2. Pace yourself.  I’ve heard from multiple people in multiple contexts: this is a marathon, not a sprint. Don’t push yourself to every event, just more than you would have attended before. Take breaks, engage in self-care, then come back.
3. Don’t get discouraged when you do things wrong.  Most of the issues I’ve addressed above are things I myself have done. I didn’t protest police brutality until Michael Brown’s death in 2014, and even then I happily chanted “OUR STREETS” until the problem was pointed out to me. Acknowledge your mistakes and do better the next time.  Let your attempt to self-correct be the momentum that keeps you involved.

Speaking of self-correcting mistakes:

Speaking over marginalized groups.

I mentioned that this happened at the BLM events, and it happened at the Women’s March too.  As the last few speakers – all of them women of color – addressed the crowd, a chant gradually took over the audience.  People – most of them white – started shouting “March, march, march!” Our impatience to walk led us to literally shout over women of color who were trying to inspire us.

I will acknowledge that the size of the crowd meant people at the back couldn’t hear all of the speakers, but that does not excuse the people around me who started chanting. It does not excuse our tendency to value our white voices over other voices.

So let’s stop and listen. There are so many ways to do this, especially in the age of the internet.  Marginalized voices are speaking on Twitter, Facebook, on blogs of all sizes, at rallies, panels and public addresses. It’s time for us to listen.

It’s time to make sure our feminism is intersectional, meaning it includes people who are non-white, Muslim, poor, disabled, fat, and/or LGBTQ+.

It’s time for us to learn and acknowledge the ways that different marginalized identities interact and how their problems may differ by state, city, even neighborhood.

It’s time for us to listen to and amplify marginalized voices without speaking over them.

It’s time for me to shut up so you can start acting.  Listen. Acknowledge. Keep fighting. Keep showing up.

I’ll see you there.

It really IS about ethics this time: cultural competence, evidence-based practice, and LGBTQ+ issues in allied health

Two years ago, I was doing a home visit as part of my job as an Early Intervention speech-language pathologist (SLP), when a parent suddenly and unexpectedly launched into an angry, homophobic rant.  We had been discussing age-appropriate activities to encourage language development, and I had suggested several pretend-play ideas, a few of which clashed with this parent’s perception of the child’s gender.

In the resulting diatribe, during which the phrase “no [offspring] of mine” as well as several gendered and homophobic slurs were used liberally (so to speak), the parent argued that people could choose to be “homosexual,” that homosexuality could be triggered by gender-nonconforming behavior, and – of course – queerness of any variety  was  “unnatural.”  The other parent’s response made it clear that the two were in full agreement on this topic.

At this point, I became acutely aware of the fact that both parents were positioned between me and the door.

My mounting anxiety dissipated when, in a moment of dramatic irony, the tirading parent made this statement: “I’m [xx] years old and I’ve never met a gay person in my life.” I resisted the urge to giggle hysterically and/or pointedly re-introduce myself.  Instead, I directed the conversation to the previous topic and continued the appointment with every ounce of professionalism I could muster.

I should note that neither parent ever said anything even hinting at violence.  Between that and a fortunate lack of gaydar in the family, it was clear that my – and the child’s – safety  was not in question.  So, despite vehemently disagreeing with their beliefs, in spite of the many terrible situations that may arise as this child grows older, even though it gave me a bad taste in my mouth to even return to that house, I continued to work with the child until months later, when for unrelated reasons I left Early Intervention altogether.

In short: I did my job.

When I became an SLP in the United States, I signed a Code of Ethics by the American Speech-Language Hearing Association (ASHA).  Among other things, this code clearly states:

Individuals shall not discriminate in the delivery of professional services or in the conduct of research and scholarly activities on the basis of race, ethnicity, sex, gender identity/gender expression, sexual orientation, age, religion, national origin, disability, culture, language, or dialect.

“Culture” being the keyword here.  In signing the ASHA code of ethics, I agreed to abide by the principle of “cultural competence,” as defined here:

Cultural competence involves understanding and appropriately responding to the unique combination of cultural variables—including ability, age, beliefs, ethnicity, experience, gender, gender identity, linguistic background, national origin, race, religion, sexual orientation, and socioeconomic status—that the professional and client/patient bring to interactions.

Since neither my nor the child’s safety was in question, I had no ethical reason to refuse to work with this family. Had I chosen not to return, I could have delayed services for several weeks while the family waited for another provider to be assigned, simply because their belief system clashed with my identity. This was not what I had agreed to do as an SLP. This was not culturally competent.

I tell this story to make it clear that cultural competence and anti-discrimination work in both directions.

From time to time, I encounter articles or discussions related to queer issues in SLP spaces on social media.  For example, ASHA has posted a few articles about voice specialists who work with transgender people.  Typically, the response to these articles is overwhelmingly positive, which gives me a warm fuzzy feeling and makes me feel proud to have chosen this career.

Yet, there’s always that one person.

In response to articles about voice work with transgender people, the dissenter typically expresses the hope that insurance companies are not expected to pay for these services.  Other comments invoke the “love the sinner, hate the sin” cliche. On rare occasions, I have even seen comments similar to those made by the homophobic parent.

Every time this happens, there’s a sizable backlash to which the the dissenter  responds defensively.  You bigot, they say to people who find their homophobia and/or transphobia offensive, how dare you discriminate against my right to have personal beliefs?!

Moving past the issues with that statement – not because they’re irrelevant but because they’re outside the focus of this entry – I feel the need to point out that ASHA-certified SLPs are ethically required to put our personal beliefs aside in professional contexts. We can have our opinions, but we check them at the door when we’re working.  Neither is there room for personal beliefs, especially ones that have no basis in scientific evidence, when we discuss issues related to professional practice.

Which brings me to another Ethic in ASHA’s Code:

Individuals who hold the Certificate of Clinical Competence shall use independent and evidence-based clinical judgment, keeping paramount the best interests of those being served.

Evidence-based practice means that we make clinical decisions, such as who to treat, how to treat them, and when to stop, based on up-to-date and well-conducted empirical studies. If you want to believe that queer people are “unnatural,” you do so in your own time until you have scientific evidence to support your claim.

To that end, there is evidence to support the legitimacy of gender dysphoria, as well as mixed but largely supportive evidence that transitioning significantly benefits transgender people.  Further research is needed, of course, but we have passed the point of being able to claim scientifically or professionally that transgender people are “unnatural” or “wrong.”

Instead, we as SLPs should be questioning the role of voice in the transition process.  Is voice change a medically necessary component of transitioning?  Can hormone therapy sufficiently alter voice, or do transgender people require additional  services?  How do we differentiate between transgender people who medically require SLP services, and people for whom it is elective?

I am not a voice specialist.  I don’t have the answers to these questions.  If the research exists, I haven’t found it.  If it doesn’t, I hope someone is conducting it.  I’d love to read the results.  Until then, we need to approach this issue with cultural competence, relying on the research we do have and leaving our personal biases out of the discussion.

Cultural competence in LGBTQ+ issues is not limited to voice therapy. Queer people exist everywhere: in hospitals, rehab centers, nursing homes, schools. An Early Intervention SLP may very well be asked to work with a toddler who has two moms or two dads.  In any case, the ASHA Code of Ethics requires SLPs to treat queer clients/patients/students, families, and caregivers  with the same respect, dignity, and clinical expertise that we treat cisgender-heterosexual people, regardless of personal beliefs.  As a queer SLP, I am required to treat openly bigoted clients, caregivers, and families in the same way.

So yes, when a patient says “I disagree with gays getting married” during a language assessment, I put aside my emotional reaction in order to plan treatment.  Their belief that I shouldn’t be allowed to get married does not negate their right to regain their communication skills, just as choosing to treat this person does not invalidate my commitment to marriage equality.

If you want to attend a church that believes queer people are “unnatural,” if you choose to reject friends and relatives who come out, those are your decisions.  As soon as you project your beliefs onto the people you work with, you violate the code of ethics you signed when you became certified.  I agreed to abide by that code and I renew my commitment to it every year. I do so with the understanding the SLPs across the country are doing the same.