Let's Talk About that Kylie Jenner Image

I want to respond to something that happened this week that I'm still trying to make sense of.

Perhaps you have seen that image above of Kylie Jenner in a wheelchair on the cover of Interview Magazine and heard about the backlash from it. I’m sure like many of you, if I see anyone from the Kardashian clan mentioned in an article I ignore it. I’m convinced every time someone clicks on a Kim Kardashian article, an angel loses its wings. 

Yet, this image irked me. Most people are blaming Kylie, but I honestly doubt she made any conscious choices besides agreeing to pose for the images for profit. It was the choice of those involved at the magazine to use a wheelchair as a prop. She was literally along for the ride. As the backlash to the image began, it’s a comment from a representative from the magazine that irked me the most:

"At Interview, we are proud of our tradition of working with great artists and empowering them to realize their distinct and often bold visions. The Kylie Jenner cover by Steven Klein, which references the British artist Allen Jones, is a part of this tradition, placing Kylie in a variety of positions of power and control and exploring her image as an object of vast media scrutiny." 

I’ve been trying to formulate why exactly this image and comment are so problematic and I want to be able to communicate this from my standpoint as a disabled woman.

The problem is the choice to use a wheelchair as a prop to highlight Kylie’s supposed vulnerability because of media scrutiny fetishizes societal views of the “powerlessness” of the disabled. The “media scrutiny” has been incredibly profitable for her and is being falsely correlated to the experience of the disabled here. This is essentially disability tourism, trying to inhabit a marginalized position without the physical or cultural realities the disabled experience, such as navigating a world that is not designed for us. The editorial staff can delude themselves that they are making a political statement or high art. But we have to call it what it is: distasteful and offensive.

Disability, like other facets of identity, is a label externally and legally defined by society and not one that is chosen.  It is a label that can come with a certain level of marginalization, and like many externally-defined labels, stereotyping. The stereotype of the “restriction” and “powerlessness” of disability is fetishized and even parodied in this image. This parody silences the truth that a wheelchair is a tool for the disabled that enables freedom, access, and independence.

The ADA just celebrated its 25^th anniversary and the disabled are a protected class of citizens, but this was not always the case. It’s important to remember this. Yet, the disabled continue to face hurdles with full employment and participation in society. I mentioned in another post the limitations of the ADA and that the disabled continue to deal with limited accessibility in public and private spaces. These are some of the material realities that are invisible in this image.

The disabled are often treated as invisible in society. If you look at media, you will see very limited representations of the disabled and often you will see disability given a negative connotation—it’s treated as some sort of obstacle to “overcome,” a physical vulnerability, or a reason for pity or empathy. Disability is also often defined rigidly as a physical manifestation that is visible to the able-bodied, as if every disability could be “read” at a glance. Disability is not defined by using a wheelchair. Disability comes in a variety of forms and most of them are invisible. 

It’s not the fetishization that makes this image so disturbing for me. It’s the perpetuation of the invisibility and silence of the disabled community. I look at this image and see myself and others represented by that wheelchair and I am represented as a prop. A costume choice. A fashion statement. My experience is not just objectified; it is rendered silent. 

Ironically, though the intention was to make Kylie the subject of this image, the wheelchair has become the subject.

Kylie has never experienced being disabled or dealt with painful scrutiny or pressure to conform to societal expectations about what disability “looks like.” I have lived as able-bodied and disabled now so I have experienced both worlds. We need more voices from the disabled to challenge rigid definitions of disability, to express the experience of being disabled and the struggles and triumphs that come with that label, and more importantly, to show that the disabled are three-dimensional human beings. 

Often injustice comes in the form of a thousand cuts, a thousand slights that slice deeper and deeper into our sense of worth, leaving unseen scars that are continually re-opened. I have experienced derision because of my illness and disability and in the health communities I’m in people share the derision they experience daily. Since becoming ill and disabled, I am witness to injustice every day in some form beyond my own personal experience. Starting this blog is a way for me to give voice to the experiences I’ve seen discussed every day.

I’ve been asked “do you really need to use that cane?” I’ve had medical professionals ask in an accusatory tone “why are you in a wheelchair?” I’ve heard comments about being “too young” to rely on mobility aids. But worst of all, when I’m in my wheelchair and I’m with my husband, I often unwillingly become invisible. People often look through me and speak only to him.

I guess in some ways I’m “lucky” I never had a note left on my car when I have used disabled parking spots because I had to start using a mobility aid right after I got my disabled pass. My disability is “visible” to those who feel they are entitled to “proof” I suppose. I see people post pictures of the notes left on their cars often. I see comments constantly about people putting off getting a disabled placard even though they need one. I did as well.

I resisted using mobility aids because it forced me to “come out” with my illness. I desperately wanted to “pass” and I was able to for some time. If you can “pass,” you can be free of this derision, or the prying questions, or the constant staring. I put myself in constant precarious situations when I was trying to pass and forced myself to do things I physically could not do, ultimately making myself worse in the end.

It wasn’t worth it.

I’ve only recently began to get comfortable with the label of being “disabled” and what comes with that label. I didn’t choose this label. It chose me. My self-image has been radically transformed and how others view me and treat me in the world has also changed. It’s been a tremendous hurdle adjusting to this, but I’m getting there.

I put using off a wheelchair for a long time, even after my doctor gave me a prescription for one and my husband insisted that I needed to finally accept that I needed one. Once I finally started using a wheelchair, I realized I had so much freedom. I could go somewhere without having to immediately find a chair. I could navigate stores again. I could leave the house with more success. I didn’t have to count the steps from my car to a door to try to figure out if I could make it. This sense of freedom negated the comments and the staring. They just don’t really get under my skin anymore. I don’t have to “prove” anything to anyone. I’m just living my life and doing what I have to do to live it the best I can. All that time I put off using a wheelchair was wasted time.

My wheelchair gives me power. This is something that the editorial staff at Interview Magazine or people who question my need for mobility aids don’t understand. Fetishizing societal views of the “powerlessness” of the disabled perpetuates a one-dimensional stereotype of the disabled. The gilded wheelchair used as a prop is a perfect metaphor for the vacuity of the stereotype they are peddling in the image.

The voices of the disabled responding to this image or any issue related to disability should be privileged and heard to challenge the silence perpetuated in this image. This image represents one of the thousand tiny cuts of injustice and though it may be a minor cut, it deserves analysis to avoid more cuts in the future.

You can read more articles commenting on the disabled view of this image here, here, and here 

Interview with Children's Author Jennifer Kathleen Kuhns

Today’s post features the voice of Jennifer Kathleen Kuhns, a disability advocate and children’s author. This post has been in the works for some time but since my health has been up and down over the last year, it’s taken awhile to finally get it up. Jenny and I met while working on our undergrad together. We had a few classes together and I got to know her and her mother, her caregiver, over a few years. She was always wickedly smart, determined, and funny. She was also the first person with Cerebral Palsy I had ever met.

Although it pains me to say the time we shared in classes was about 10 years ago, one of my strongest memories of Jenny is the poem she shared in our creative writing class. The poem was about her experience at a zydeco festival, and I had not realized what a gifted writer she was until she read that poem. The fact that I remember this poem all these years later (considering how terrible my memory is) really demonstrates her gift.

We didn’t cross paths again until about a year ago and since then we have been corresponding through email. She has been telling me about her books and her academic work and I’ve been telling her about my conditions and transitioning from able-bodied to disabled. 

She has decided to write her next book about a young boy who is diagnosed with POTS and I have been trying to help her gather information for that book. It will be the first children's book about POTS! Because her work is so important, I asked if I could interview her for the blog so she could share her work with you and thankfully she accepted:

1.Tell everyone a little about yourself.

My name is Jennifer Kuhns and I am a thirty-five year old author, painter and poet.

I also happen to be disabled and in a wheelchair.  My disability is classified as quadriplegic Cerebral Palsy.  I grew up in Hollister, California with my parents and two siblings.  My mom says that very early on I developed an odd, but very funny sense of humor…and an acceptance of other peoples’ actions toward me…although I do hate being patted on the top of the head like a pet dog.  As far as being disabled, I of course have limitations, but that didn’t stop me from joining 4-H and FFA. 

I graduated from San Benito High School in 1998.  I then attended Gavilan Junior College in Gilroy, Ca. where I received my AA degree.  I then transferred to CSU, Stanislaus where I earned my BA in English and Master’s degree.

While in college working toward my Master’s degree I conducted extensive research on the topic of folklore and literature for children, and came to the realization that children's folklore in the form of literature is an important tool for a variety of reasons. It is my opinion, beginning with folklore, that children's literature opens up an entertaining portal for children to be taught about and to examine life through the transcendent power of literature. I truly believe because children have such levels of imagination and acceptance, literature has the potential to change perspectives and create new views.  My passion resides in literature and education without prejudice for children, as well as helping children understand that being different isn't a bad thing.  I continue to strive toward the idea of inclusion and acceptance in my writing.

I guess what I learned most about growing up and being a disabled person is to try everything you can, don’t give up, and laugh most of all…

2. When did you start writing for children?

I’ve wanted to write almost forever.  When I was in grade school I used to write stories and make little mini books.  The first book I wrote, Were You Born In That Chair?, started out as a two page short story that turned into a play that was eventually turned into the book.   

My biggest issue with children’s books in general, when I was a kid, was that when I was growing up there were not, well, very few books with disabled characters.  Kids like to identify with the characters in the books they read.  I had none.

3. What inspired you to write your first book?  Do you have a personal identification with the character in the book?

The first book I wrote, Were You Born In That Chair?, was actually a question asked of me when I entered my first day as a mainstreamed student in kindergarten.  From that day on, I have always kind of had a “bee in my bonnet” in regards to the attitude toward and treatment of people with disabilities.  Upon completion of an extensive research project, I came to the understanding that a negative attitude is not a state of being, but a learned behavior mostly due to fear and ignorance.  My intent and purpose for writing this book was and is to change the outlook and opinion of society towards people with disabilities, since in reality, every human being has some sort of disability or challenge to overcome.  My hope is to promote an all-inclusive nature of acceptance of imperfections of and by humanity.  I mean really, who in this world is perfect?  As far as having a personal identification with the character…I was/am Hailey.

4. What compelled you to write for children?

As I mentioned before, I have always had a “bee in my bonnet” in regards to the attitudes toward and the treatment of people with disabilities.  I understand, being a person who has a disability, and have lived through the misconceptions, the reality of being stereotyped as being less than whole, as well as prejudged and pitied. My first book, Were You Born In That Chair?, was my attempt to re-position, beginning with children, the outlook and opinion of society towards people with disabilities…..since in reality every human being has some sort of disability or challenge to overcome. 

5. Why is it so important to educate children about disabilities?

My personal feeling and objective in writing children’s books about disabilities is to assist in changing how differences in a multicultural world, regarding disabilities specifically, are presented to and perceived by children from an all-inclusive perspective.  What do I mean….My goal is to write children’s books that children can learn from and help them to understand the world around them…or things parents and teachers don’t know how to approach.  I hope children will learn to ask questions, be compassionate, understand who they are and where they come from, be open, not afraid, be curious, and to look beyond the surface.   

6. What has been the response from parents and children to your books? 

The response has been nothing but positive.  Teachers love the books especially because of the interactive-ability of the book…plays, cutouts, ancestry interests, and so forth.  I have shipped copies of my books all over the country as well as to places such as Canada and Indonesia, many of which have gone to teachers.

Here are a few of the reviews listed on the books:

My daughter and I loved reading Paisley or Plaid…being your very best you. The variety of stories and poems were appropriate for my young daughter at the age of five and also great for my 10 year old son. The stories were creative and thoughtful, and always with a lesson to be learned. I loved the poems and how they were placed throughout the book. The illustrations were adorable and very relatable. My daughter has enjoyed other books written by Jennifer Kuhns such as Hailey’s Dream – Janice Keene, Preschool Teacher and mom of two

This story draws us in from the start with its humor and empathy...an excellent example of the power of narrative to deepen our understanding of the range of human life.  - Dr. Keith Nainby, Assistant Professor, Department of Communication Studies, California State University, Stanislaus

                                                                       

I was disappointed to discover that there aren't many published books on the subject of children living with disabilities.  I read Were You Born in that Chair? to my fourth grade students (and) was amazed they were engaged in listening to the entire story!  The story is intuitive and insightful.   -Marianne Gartenlaub, Fourth Grade Teacher   

A Box Full Of Letters is a delightful, entertaining, and educational book for young readers.  A witty story.   - Francisco Jimenez, author of The Circuit, Breaking Through, and Reaching Out

I really enjoyed the lesson Hailey learned.  I think she learned that being in a wheelchair is actually a lot more fun than you
would think. -Audra, 4th grade

7. What projects are you working on right now?

I have recently started research and work on my fifth book entitled Miles to the Moon. I say research because the main character, Miles, is a young boy with something called POTS or Postural Orthostatic Tachycardia Syndrome.  This is a lesser known condition or disability than say Cerebral Palsy, Autism, or Muscular Dystrophy, and I know virtually nothing about it other than a friend developed the condition.  I need to know all I can about what I am writing about before I even start writing.

This is a brief internet definition: (POTS) is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. OI describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom of OI is lightheadedness or fainting. In POTS, the lightheadedness or fainting is also accompanied by a rapid increase in heartbeat.

Anyway, Miles is a boy obsessed with the outer space, especially the moon. Like his condition being “cured” for a lack of a better word, going to the moon is a far off dream or reality.

8. What are your goals for the future and what impact do you ultimately hope your disability advocacy will make?

My hope is, beginning with children, to change the outlook and opinion of society towards people with disabilities since in reality every human being has some sort of disability or challenge to overcome.  I think it is best explained by a passage in A Box Full Of Letters where Hailey’s father, Andrew, tries to explain to her what the phrase “change the establishment” means and how difficult it is to do:

"Let's see," Andrew began, "it means that things are done a certain way because someone, in earlier times or in the past, or someone very important or powerful, made the decision that that is the way it is supposed to be done.  That is the establishment.  Usually rules, laws, or the government are what people are talking about when they talk about the establishment.  It is pretty much what and how people think about things.  In this case, your mom is the establishment.  She said dinner was ready, and if you want to get fed you don't argue.  You don't fight the establishment."

I hope, as Hailey learned, that changing people’s views it is totally possible. It just takes a while for people to accept change.  But, as Hailey explains to her dad, “People can totally fight and change the establishment.  Grandma Sophie just told us so."

You can find Jenny's website here  and her Amazon author page with all of her books here 

Desperately Seeking Accessibility

I’ve written extensively about living a version of Kafka’s Metamorphosis, waking up in a brand new body one day. Yet, I also woke up to a new world, a world that looks the same but is nothing like the world I used to live in.

I’ve spent most of my life as an able-bodied individual who rarely considered the challenges of the disabled. 5 flights of stairs? Easy. 4 mile hike to the top of a mountain? Done. One available parking spot that’s a block away from where I want to go? No problem. It wasn’t that I didn’t care or was uninterested. The concerns and challenges of the disabled often weren’t part of my day to day life. As I’ve become increasingly more and more disabled over the last few years, those challenges have become part of my life and have given me a completely different perspective on the challenges of those who have been disabled most or all of their lives.

The US passed the Americans with Disabilities Act in 1990, which protected the disabled from discrimination and required that public and private facilities be accessible. It was a transformative piece of legislation that gave the disabled the same protections the Civil Rights Act of 1964 afforded to populations that were historically marginalized. I also live in a state that is considered one of the most accessible in the nation. I am fully aware that I enjoy the fruits of many hard-fought battles to give the disabled this level of accessibility. Yet, as with every law and especially civil rights laws, the battle doesn’t end after passage.

Leaving the house when you are disabled requires careful planning, logistics, and execution, something I never had to worry about when I was able-bodied. Going out almost always means I’ll need my wheelchair now. Places my husband and I have been going to for much our lives present complex challenges now. Before we go anywhere, especially some place new, we have to consider whether there will be steps, will there be an elevator, will my wheelchair fit in the space, how close can we park, what do we do if all the handicapped spaces are taken, will there be a ramp? Although businesses are required to conform to ADA standards, you will find that those standards are not always met or are met haphazardly. An important question is if the business doesn’t meet the ADA standards or is inaccessible despite meeting standards, what do you do?

I read an article about a year ago about a local woman who was suing multiple local, small businesses because they were not ADA compliant. My first response was horror. The article did not paint her in a positive light and I worried about the public image of the disabled and whether actions like this would threaten the profitability of small businesses.

Normative attitudes and media representations of the disabled are fraught with ableism and ambivalence. A disabled person can be held up as a one-dimensional source of inspiration for the able-bodied and then in the same breath disparaged as a “leech” on society to justify drastic, inhumane cuts to disability benefits and other social services. As with all stereotypes, these images can be damaging and rarely reveal the entire picture of what it means to live with a disability.

Disability advocates have worked to challenge these images. Stella Young gave a TED Talk titled “I am Not Your Inspiration, Thank You Very Much” that has over 1 million views on the TED website (click here for her talk). She gave a humorous and enlightening challenge to this inspiration stereotype. Slate recently posted an article deconstructing some of the commercials that aired during the Super Bowl that also used this stereotype. We all love inspirational stories, but the disabled are often used as a prop to remind the able-bodied “if they can do it, you can do it.” The contrast is the myth that the disabled and ill exploit systems for personal gain. Stereotypes breed silence and dismissal. 

When the disabled sue these businesses, there may be compensation but action is also taken. Yet, is this the only means to achieve these ends? 

When I shared my horror about the story of the local woman, one of my good friends directed me to a story from NPR’s This American Life titled “Crybabies,” which discusses one man in particular who has made a huge profit from suing non-ADA compliant businesses. It’s a great listen if you are interested in this issue. Important moral questions are raised and they highlight that there is no regulating body that visits businesses to ensure they are ADA compliant. As history has taught us, we cannot rely on others to fight our battles, and some have taken matters into their own hands.

Here is the section of the podcast that discusses this:

The question I think we should be asking is what can we do as a society to ensure everyone has access and protection under the law. The fact that these individuals are suing companies is a symptom of a larger problem.

I've only been a "crybaby" once. I've experienced limited accessibility many times, but one in particular irked me especially. Seven months ago when I could still leave the house regularly and drive, I took my mother to Target to help her find some clothes. My mother cannot drive and needs help with basic tasks. She couldn't do it on her own. 

This was my first time using the electric cart at Target. Before this, I would usually tell my husband “I got this. I can walk around the store on my own. Easy” which inevitably led to me standing on the cart and my husband pushing me to a seat in the store. It would have been fun if I wasn't in such bad shape from forcing myself to walk. If you have ever been in most clothing stores, you have probably noticed how tightly-packed each section is. Just getting a shopping cart around can be challenging. I realized very quickly that the electric cart the store provided did not fit in about 40% of the store. I could not help my mother find items, and she could not do it on her own. It became a steaming pile of failure.

I eventually got trapped in one of the sections, and I became so aggravated I went full Hulk. I started slamming into things to get out, drawing onlookers and stares. I couldn’t get out of the store without riding that cart so I didn’t care if I knocked everything over so I could leave the store. Like any red-blooded American, I like shopping and I really love Target, but I haven’t returned since. I emailed Target right after this to express my disappointment. Their response made me more angry.

It took them months to respond and when they finally did, they told me to “find a customer service representative” to help me be able to look at things in these sections. One: I was trapped so how I was going to find someone to help me? Two: I don’t want to ask for help just to look at a pair of jeans! 

Should I bring a radio and learn Morse code so I can send out distress signals throughout the store?  

Handicapped lady trapped in the sock section. Coordinates unknown. Send help. Now.

I combed through the ADA to see if businesses were required to have aisles the disabled could navigate in all parts of their store. They do not. As long as the disabled can ask for help, then it’s legal for parts of a store to be inaccessible. I'm not done with Target. I still want to communicate to them I don't think this is enough. 

I learned a valuable lesson from this experience: the disabled do not want to have to ask for help, especially for something simple many of us take for granted. This is something I had never realized in my able-bodied life. I started to empathize with these individuals who sue businesses who are not ADA compliant—though I doubt I could go that far. There often can be easy, straight-forward fixes that could assure accessibility. I think most often businesses don't realize they are inaccessible so being a "crybaby" may be the only way for them to know this.

Some advocates are creating other solutions. A disabled man with MS created a website and crowd-sourcing app called AXS Map that allows users to rate businesses based on accessibility, at AXSmap.com. This makes the difficulty of leaving the house, especially going to new places, simpler. Here is the video that outlines how the app works.

I don’t often get to leave the house, but when I do I will use this app to rate each business. There aren’t any ratings for businesses in my town so I hope I can get the ball rolling. I hope you also find the app useful too.

Disabled and chronically ill individuals are also consumers. We have the power to make decisions about where we spend our money and my studies in consumerism have taught me that those decisions can have social and political ramifications. Handicapped parking spaces, ramps, elevators, hearing or visual aids, handle bars, and accessible aisles may present challenges or inconvenience to the non-disabled, yet these things can be lifelines in an ocean that is designed for the able-bodied. I never fully grasped this until I became disabled.

Creating a more accessible world and some accountability for accessibility will continue to require effort. An accessible world is a world we can all partake in, and that is truly something worth fighting for.