Real People, Real Stories: An interview with Penny Loker, advocate for those with facial differences

Penny Loker was born with hemifacial microsomia and Goldenhar Syndrome, which have affected the way people see her and how she sees the world. Here is her story:


Can you describe your advocacy work for those with facial differences and how it began?


I should mention right off the bat that I never saw myself as an advocate; I never set out to be one. I felt like an outsider all my life; I wasn’t entirely content, but it was how it was, and it was what it was. I kind of fell into advocacy work; on a day in 2013. I was at work, it was a slow day, and I was looking over CNN’s website, as I did most days.

I happened upon a photo journal essay on the effects of Agent Orange on the population. One of the biggest impacts was how it impacted developing fetuses which resulted in children born with various differences. From limb differences to facial differences. Because of the economics and/or how society viewed differences, these kids were left in this hospital left in the care of a few nurses. Most didn’t even leave their cribs. The very first slide of this essay was a viewer discretion warning. Yet the first actual picture was of a little baby standing in her crib with the biggest smile on her face. The juxtaposition between the warning and this picture was staggering.

A wave of anger boiled up in me, the likes I had never felt. I was ok with my difference, being laughed at, called names; I could handle that, but to see a warning that pretty much said that viewing these sweet kids may cause some people to be upset or offended loosened something so deep in me. For the first time, I felt like I needed to say something; to stand up for these kids who most likely would never see the warning or this slide show. I ended up commenting on the essay, but my comment was never published. The next day still being so mad, and after talking with my manager, I decided to find the contact us section and write an email. I expressed anger but also advised them about how it made me feel about how it impacted me. A day or so later, I heard back, and CNN agreed to change the wording; but got my ok with the new wording before updating it.

I learned that day that one person could make a difference; I realized I had found something I didn’t know I was looking for, my voice.

You often discuss how movies and other media fail people with disabilities. What would you most like to see change?

I would like to see honest and true representation on all levels. I want people with disabilities to have a seat at every table. I want the general public to stop seeing us as something to be pitied, as villains and as a group that should/can be ignored. It’s pretty simple, let those with disabilities tell our own stories in our own way WITH our own voices.

You’ve discussed how writers often make the villains the only characters with facial differences, why do you think writers continue to do this?

Because they are lazy. . .because that’s always how it’s been done, and they don’t know the real-world impact. Even when I bring this up with friends or with strangers, the number of times I’ve heard, “Oh wow, now that you’ve told that to me, I notice it everywhere” has been mind-blowing and exhausting. This goes to the previous question; because we are not allowed to tell our stories in our own way, it makes it so that this cycle continues.

If you think of the movies and television shows you’ve seen and the books you’ve read, what are some of the best representations of characters with facial differences? And characters with disabilities in general?

I relate to any book, TV show that shows otherness. The most recent is a show on HBO called The Nevers. A short film that was nominated at the Oscars called Feeling Through, which was made alongside the blind/deaf community. A book I feel that is well done is by Ami McKay called Witches of New York, where one of the characters (NOT the villain, I might add) has quite the facial difference; it’s a part of her but not her whole being. It’s such a great representation. I will celebrate any work by the community.

What do you wish people understood about your life?

That I’m the same. I own my own home, and I’m proud of that. I get up and work like everyone else, I have bills to pay like everyone else, I have to mow my lawn and shovel the snow like everyone else, and that I’d LOVE to be able to do that without having to be stared at while doing it.

In your short essay, “Putting Myself Out There,” you describe your dating experiences and experience of others’ restrictive notions of beauty. These days, what is your definition of beauty?

I don’t give the concept of beauty much thought these days. Thinking about it gives me anxiety. I don’t look at others and think that they are attractive or beautiful; I think about how they are doing, about the confidence they are projecting, the slyness in their eyes. I focus on how they hold themselves and the actions they are taking.

In Amanda Leduc’s Disfigured, you discuss how fairy tales shaped your young life. Could you talk a bit more about this?

Like most kids I grew up watching Disney movies; that was our entry in to the world of fairy tales. My mom didn’t read to us so I didn’t get a ton of exposure to stories outside of these movies. I enjoyed them as a kid; as I got older I realized that I saw myself more as the villain than the princess. It started to colour my enjoyment of watching them. I didn’t see myself; when I did the movies showed that I shouldn’t be loved, that like real life I was made fun of and shunned; no one wanted to be my friend. Movies and stories in general have a way of influencing society kids on the playground reinforced this by calling me the names of the villains in the movies we all grew up watching. To this day I have a hard time watching some Disney properties and I def will never set foot in a Disney park.

How would you define accessibility?

Accessibility is the breaking down of social and physical barriers (of any kind) that prevent someone from being able to participate in an event, job, conversation…etc.

How does accessibility (or the lack of it), both online and in the physical world, impact your daily life?

With online accessibility, the biggest barrier I have to deal with is how programs, computers, etc., are not easily modified where I can see the content. I recently got a new laptop for which I’m writing this email, but I had to increase the font size just so I could read the words I’m typing. There is no seamless way to update the screen resolution and/or make ALL font size across the whole screen big enough for me to see.

I’m hard of hearing, so the voice programs that typically are used to read screens are also not easy for me to use. In my physical world, it will again have to do with my vision. I can’t see pricing sometimes, and ingredients list because of the tiny-sized font. If I’m with my sister, it’s less of a problem. If I’m on my own, I tend to either buy what I need and hope or just leave it and have my sister pick it up at a later date.

The other issue I run into is that due to my jaw, I have a hard time making words, so I find that strangers have a hard time understanding me; this is the most frustrating as most people don’t take the time to listen, and it makes me feel small and extremely self-conscious.

What is the most accessible space you’ve been in in the physical world? And what’s the most accessible website you’ve ever been on? Why?

My home is the most accessible physical space I’ve been in. I know where everything is, there are no expectations, and when/if I need help, I have those who love me with me. Outside of my home, I find hospitals are super accessible; they are kind of made that way, and I feel like all buildings should be. I can’t give any specific websites, but I appreciate ANY website that incorporates the ability to increase font size. I 90% use my cell phone, and the mobile sites can be tricky, but Apple does offer the option to strip away everything but the text and offers the ability to make it bigger. Here is an example of a website that I have used that has a lot of great accessibility features:

Do you have anything you want to share (observations, anecdotes, etc.) that hasn’t been covered in any of the previous questions?

I think one of the biggest frustration is that it seems that no matter how far we’ve come as a society, it feels like we haven’t made headway. The sheer number of obstacles that exist that are inherently built into our institutions, laws, and acceptable decorum continues to isolate people with disabilities. There has been a ton of conversation but not enough action.

Categories: World of Accessibility