Barbara Greenlee Toomer: A World Without Barriers

Did you know that September is Spinal Cord Injury Awareness Month? Spinal cord injuries affect everyone differently, and though some SCI survivors are in wheelchairs, many others (such as myself) live with “invisible disabilities” that still impact their daily lives. Thanks to advances in medicine and awareness, though, people with disabilities have more opportunities now than at any other time in history. One of the people who helped make that possible was polio survivor Barbara Greenlee Toomer.

In 2017, there were only 22 reported cases of polio anywhere in the world, thanks to global efforts to eradicate the disease, but in the 1950s, tens of thousands of children contracted polio in the United States alone each year, killing thousands and leaving many more paralyzed. In 1955, when doctors announced that they had created a successful polio vaccine, church bells rang across America in celebration.

Though the vaccine quickly caused a drop in polio infections and deaths, the vaccine was in short supply at first and was only available to the most vulnerable populations: mainly children. That was why, when Barbara Greenlee Toomer’s first child was born in 1956, the infant received a polio vaccine and Barbara did not.

Not long after, polio swept through the military base where Barbara lived. Her child remained healthy, but Barbara came down with horrible back and head pain. She was able to walk into the hospital, but she would never walk back out. Polio left her paralyzed, and she saw family and friends turn away from her and her disability.

But Barbara did not let polio slow her down. She did not just want to live with her disability, she wanted to be a person with a disability who fully lived. And she wanted the same for other people with disabilities as well. In fact, she was arrested dozens of times while protesting for disability rights, wheelchair and all. She even chained herself to buses that did not accommodate wheelchairs. To find out more about how Barbara Greenlee Toomer championed fair treatment for everyone, regardless of their abilities, read Utah Women: Pioneers, Poets & Politicians, available for preorder now on Amazon.

Below: Children with polio-induced paralysis learning to walk with leg braces.

PikiWiki_Israel_10876_Alyn_Day_Camp

Diversity in Children’s Books

Those outside the writing and publishing community may not have heard of #ownvoices, but perhaps they have noticed an uptick in books featuring diverse characters. I have an academic (and personal) interest in questions of identity as well as writing, so I’ve been paying a lot of attention to this trend and wanted to hammer out my thoughts by writing about them.

Sarah Park Dahlen and her associates have used data from the Cooperative Children’s Book Center, School of Education, University of Wisconsin-Madison to create two infographics showing how the representation of minority characters in books has changed over the last few years.

diversityinchildrensbooks2015_f

 

 

 

 

 

 

diversityinchildrensbooks2018_f_8.5x11

 

 

 

 

 

 

I looked at this and saw it as good news. It’s important for young people to see characters who look like them in books and movies. It helps them feel that they have value, that their voices matter, and that they’re part of the big story of our world.

I was surprised by the anger some people expressed over it – not that there are more diverse characters, but that there are not enough. I would agree that there is still more we in the writing community can do to make sure the voices of people of color and other traditionally-minority groups are being heard. For instance, less than half of books with brown or black characters are written by people of color, which means that the voices we hear may not ring true if the white authors haven’t been very, very careful in their research, writing, and use of the advice of cultural insiders and sensitivity readers, and it leaves young people of color with fewer role models to look up to–and maybe with the sense that their voice doesn’t really matter. I think it’s counterproductive to say that white authors should never write characters who are people of color (what kind of weird world would we be writing about if all our characters are white? Even in medieval Europe there was ethnic diversity), but I do think white authors need to think carefully about how and why we’re including diverse characters and make sure we’re not shouting over the voices of people who are struggling to be heard.

But I like Hans Rosling’s assertion that we can maintain a dual mindset that “things are good” and also that “things need to get better.” Out of a desire to keep people engaged with a cause they consider important, people might be tempted to downplay positive outcomes so others don’t turn their attention elsewhere. But if they send a message that the progress so far “doesn’t count,” people may get discouraged and give up anyway.

So, let’s look at these numbers. I was curious and turned to the U.S. Census Bureau for some statistics. Its current 2018 estimate is that about 60% of the US population is white, 18% is Hispanic (I’m choosing the term Hispanic over Latinx because it’s broader, and it’s the one used by the Census Bureau), 13% is black, almost 6% is Asian, just over 1% is Native American, less than 1% is Native Hawaiian or Pacific Islander, and almost 3% is mixed race. BUT, those numbers are for all Americans, and the racial makeup of the US is always changing. For Americans under the age of 18, Kids Count puts the numbers at 51% white, 25% Hispanic, 14% black, 5% Asian, 1% Native American and Alaskan Native, less than 1% Native Hawaiian and Pacific Islander, and 4% mixed race.

I don’t think that statistical representation is necessarily the goal. Quality matters as much as quantity, and giving people of color an edge over statistics seems fair in light of their historical underrepresentation–it won’t hurt white kids to see a higher proportion of people of color as main characters, as long as the publishing industry doesn’t go to the other extreme and make all white kids bad guys. But based on the above infographic, the only group that is still severely underrepresented are Hispanic youth. And they are severely underrepresented.

If we take out the animal books, the percentages come out differently: 1.3% of the books feature Native American characters, 6.8% Hispanic, 9.5% Asian, 13.7% black, and 68% white (that’s where the numbers would have to give to allow for more Hispanic characters). What’s the deal with the animal books? Their percentage of the market has actually gone up. I wonder if that’s because animal books can be seen as more universal: many different kids can relate to animals characters regardless of race. There’s a caveat to that, though: characters can be “coded” to be of a certain demographic even if they look “raceless” on the surface. For instance, in the latest iteration of My Little Ponies (which I enjoy along with my kids), I get the sense that all of the ponies are “white.” That could be because I’m white and white is often the “default” race in media, but it’s also the voice actors and the accents and vocal styles they use. So, those animal books? I’m not sure if we can count them as universal or if they would reinforce the feeling for non-white kids that they’re on the outside. The best understanding would come from asking non-white children what they think.

There are a few other aspects of these numbers I find troubling, beyond the fact that the number of Hispanic characters is so far behind actual demographics. One is that Pacific Islanders are lumped in with Asians. This happens a lot, but there’s a pretty wide gap between the history and culture of the Pacific Islands and Asia. I’ve looked for kids’ books specifically about Pacific Islanders, and they’re very hard to find. Also, mixed-race kids don’t seem to be represented at all in the statistics, even though they’re growing as a share of the population (a common shortcoming).

What about religious diversity? I have seen more kids’ books with Muslim characters lately, and I think reading about people of other faith traditions goes a long way toward reducing fear and antagonism between various groups–atheists, Buddhists, Catholics, Hindus, Muslims, Jews, Mormons, Methodists, etc.–we all need to understand each other. Showing the complexity of faith and religion is great, but none of these groups should make its main appearance in literature as a “boogieman” (something that often happens to many organized religions, but especially various Christian denominations and Muslims).

And kids with disabilities? They tend to be very underrepresented as well, and apparently, no one is even thinking of tracking their numbers (in the future, they’re going to be tracking LGBT+ representation).

So, there’s room for improvement in creating a selection of diverse children’s books, but I still think we can celebrate the progress we’ve made as a writing community. I’ve enjoyed many of the diverse kids’ books I’ve been reading and sharing with my children. For those of us who aren’t publishing gatekeepers (agents and editors), we can still encourage diverse books by seeking them out and buying the best ones for our children to signal to those gatekeepers that there’s an interest.

Image credits:

Huyck, David and Sarah Park Dahlen. (2019 June 19). Diversity in Children’s Books 2018. sarahpark.com blog. Created in consultation with Edith Campbell, Molly Beth Griffin, K. T. Horning, Debbie Reese, Ebony Elizabeth Thomas, and Madeline Tyner, with statistics compiled by the Cooperative Children’s Book Center, School of Education, University of Wisconsin-Madison: http://ccbc.education.wisc.edu/books/pcstats.asp. Retrieved from https://readingspark.wordpress.com/2019/06/19/picture-this-diversity-in-childrens-books-2018-infographic/.

Released for use under a Creative Commons Attribution-ShareAlike 4.0 International (CC BY-SA 4.0 license). You are free to use this infographic in any of your work, including presentations and published work, so long as you provide the full citation noted above.

 

Utah Women: Pioneer, Poets & Politicians

I LOVED working on this project – Utah history has so many inspiring stories and amazing women – and I’m excited to have a release date and cover! Utah Women: Pioneers, Poets & Politicians coming November 2019 from The History Press.

Trailblazing in Untamed Territory

Representing lawmakers and lawbreakers, artists and adventurers or scholars and activists, the women of Utah defied stereotypes. At the crossroads of the West, they found new challenges and opportunities to forge their own paths. Emma Dean explored the Rocky Mountains with her famous spouse John Wesley Powell. Martha Hughes Cannon defeated her husband to become the first female state senator. Maud Fitch drove an ambulance under German artillery fire to rescue downed pilots in World War I. Author Emily Brooksby Wheeler celebrates the remarkable Utah women who, whether racing into danger or nurturing those who fell behind, changed their world and ours.

UtahWomenFrontCover

Suffering from “the spleen”

My blogosphere silence lately has been due to the extreme busy-ness of conferences, Pitch Wars, and my own editing, but I found this interesting tidbit while researching Renaissance life and health, and I had to post about it. I’m reading the letters of a seventeenth century woman who complains of suffering from “the spleen.” Her symptoms sound like depression and/or general anxiety disorder, so I did a bit of research and, sure enough, “the spleen” was the sixteenth century catch-all term for those and related mental health problems.

This was interesting to me because of the similarities and differences between mental health then and now. The symptoms were recognizable: moodiness, withdrawal, long-lasting “blue” feelings, irritability, trouble sleeping and/or oversleeping, and general nervousness or worry. Mental illness is not a phenomenon belonging only to the modern world.

One thing that was refreshing was the general Renaissance medical consensus that mental illness had a physical component: it was called “the spleen” because Renaissance doctors believed the symptoms were caused by an imbalance of the “four humors” that made up the body (blood, phlegm, black bile, and yellow bile) caused, in this instance, by trouble in the spleen. With some modern folks claiming that mental illness and other hard-to-quantify health problems are just in the sufferers’ imaginations, it’s good to remember that it was recognized centuries ago as a real, physical health issue resulting from chemical imbalances in the body (even if early physicians weren’t clear on what those chemicals were).

On the disappointing side, there was a stigma even then against “the spleen” as being a woman’s illness. Though my seventeenth-century letter writer recognized some of the symptoms in the man she was writing to, she hesitated to “accuse” him of suffering from a “feminine” disease. This attitude persists today, making men less likely to seek help for their mental health issues. I also suspect it’s why mental illness came to be taken less seriously as a medical issue–as later generations focused on women’s perceived weaknesses, they began more and more to see mental illness as just a sign that women can’t handle much of anything (studying serious topics, thinking about politics, eating meat…), leaving countless men and women to suffer in silence (or in horrendous institutions for hiding away the mentally ill) until the recent push for reconsidering our understanding of mental illness.

I think mental illness is a topic we should shed more light on and continue to de-stigmatize, and I’m looking forward to exploring it in my upcoming NaNoWriMo writing project.

portrait_of_a_patient_from_surrey_county_asylum_no-_13_8408235032
A Victorian woman institutionalized for mental illness. A better understanding of mental health might have freed her from her prison-like existence. From the UK National Media Museum.

 

Better off dead? This is why we need diverse books

As a non-contributing member of society, apparently I would be better off dead. At least according to a friend’s co-worker, who holds this opinion of all paralyzed people. It’s a prejudice often reinforced by the media, including a certain recent book-turned-to-movie. I’ve even heard it suggested that giving a villain a disability is a great way to make them more “villainous.” Because, you know, disability=reduced humanity.

If my friend’s co-worker had been talking to me directly, she might have been surprised to know that I’m partially paralyzed–the effects of my incomplete spinal cord injury are only apparent in my slight limp and frequent clumsiness (and my chicken-peck typing)–but it’s still a disability I live with every day and, like many people with disabilities, it leads me to struggle with a lower self image and bouts of depression.

Maybe I would make the “contributing member of society” cutoff to this person, but why should she–or anyone else–get to make that call? Who’s to say who contributes–who has value–and who doesn’t? According to the CDC, 1 in 1o Americans is living with a disability (more if you include the crippling effects of mental illness), and nearly everyone will suffer some form of disability in his or her lifetime. Certainly we all still have value–we all still contribute in different ways, whether on a large scale or a small one.

It amazes me that anyone would actually have such a negative view of those with disabilities, and I can only attribute it to ignorance. The best cure for that kind of ignorance is understanding and empathy–seeing the value in a life different from one’s own. We can’t ever know exactly what it’s like to be someone else, but books can get us pretty close. The best stories feel so real that we are lost in another person’s world for a while–we become them for a few hundred pages. And once we’ve been in someone’s head, we’re never going to look at them the same way again. We may not completely agree with them, but we’re going to understand their point of view. We’ll see past the stereotype to find that their life has value too, regardless of ability or disability, race, gender, religion, sexual orientation, etc. And for those who are disabled, seeing someone who “looks like them” overcoming challenges and playing an important role in books and movies can be encouraging and empowering.

Of course, if the media continues to perpetuate stereotypes, we don’t fix anything. So, not only do we need diverse books and movies, but we need thoughtful ones with realistic, well-crafted characters to give voice to people whose words are often drowned out by the roars of a media industry more than happy to sell stereotypes if they think it will make money.

This isn’t to say disabled characters always have to be good guys, and they definitely shouldn’t be perfect angels. Protagonist, antagonist, or secondary character, make them well-rounded human beings, affected by their disability but not defined it, and it will start to broaden society’s understanding of what “differently-abled” means.

In the wake of the Orlando shootings, I saw a chart from the FBI describing the incidents of hate crimes in 2014. Among those numbers, 2,568 were motivated by race, 1,017 by sexual orientation, 1,104 by religion, and 84 by disability. Thousands of instances of violence that could be eliminated if we could help people see past their fears and stereotypes. Understanding, empathy, and love are the only cures for the violence, hatred, and obsessive divisiveness rife in our society, and it can all start with a good book.

Diversity and disability in the media

I didn’t watch the Super Bowl, but the controversy over some of the ads caught my attention. These ads portrayed people with physical disabilities using prosthetics to achieve their goals. Many people (myself included) find these stories inspirational, but disability activists are crying foul because they say the ads are using disabled people to make people without disabilities feel better about themselves.

Before I go on, I should clarify that I have a physical disability called Brown-Sequard Syndrome caused by a spinal cord injury. It’s not a visibly obvious disability unless you’re watching for it, but it is painful, crippling, life-altering. I definitely pay attention to portrayals of disabilities in the media, and I do find them lacking. I want to find people “like me” on the screen or in the pages–not a token gimp in the background or a person so super-human their disability doesn’t slow them down, but a fully developed character whose physical (or mental) limitations are part of their make-up, their strengths and weaknesses.

According to some quick research on the US Center for Disease Control web site, roughly 1 in 10 Americans has a disability, and the number jumps to 1 in 5 when you look at the older segment of the population. I worked with a professor who specializes in Universal Design (the idea that it is a poorly planned environment that makes a person “disabled”–not able to function as well as other people), and he pointed out that almost everyone will be disabled at some point in their life, whether by illness, accident, other medical conditions (i.e. pregnancy), or age. Many of these people with disabilities (myself included at times) feel they are less “socially acceptable” than “normal” people.

So, having said that, I like seeing the positive portrayal of people with disabilities in the media. I do have strong objections to using human beings–whether disabled, sexually objectified, or whatever–as objects intended to sell products. Please, let’s treat people as people–not smiling stereotypes or “Tiny Tims” meant to manipulate emotions, and certainly not to sell something.

I also don’t want to see disabilities swept under the rug. Talking about disabilities and differences–and portraying them realistically–can help us to see past them to the things we have in common, and it can help people with disabilities feel like they’re a welcome and contributing part of society. I worry that attacks on these ads might make TV, movies, books, etc. hesitate to portray people with disabilities for fear of doing it “wrong.” By all means, people should point out their concerns, but let’s make it a conversation about why the portrayal bothers us and how to improve it. I would say this applies to all the stereotypes and two-dimensional characters we come across (female and ethnically diverse characters come to my mind, and I’m sure people can point out others). Hopefully talking and thinking about it will bring us one step closer to including a more representative cross-section of humanity in the characters we see and the people we look up to.