When You Have to Use a Disabled Parking Placard

I see it almost daily. In the health communities I’m in, someone will say “I need to get a disabled placard but I’m afraid to.” I see the images of awful notes left on the car of someone who uses a placard. You can find examples here, here, here, and here. I could keep going.

This discriminatory BS needs to stop.

I too had tremendous ambivalence about asking my doctor for a disabled placard. I didn’t even consider it an option until my mobility issues started in 2013. I was at the point where I had to drive between my classes and buildings on the college campus where I was teaching because I could no longer manage the walking. Anyone who has been to a college campus knows that finding a parking spot, just one spot, is worth its weight in gold. But I was having to find multiple parking spots all day while trying to get to class on time, and I would inevitably only be able to find a spot far in the back, which made my driving to get nearer the building pointless. It was becoming a daily crisis for me as I was desperately struggling to have enough energy to keep teaching and getting through the day. I could not waste all the energy I had trying to walk any distance and failing. 

So I went to the doctor I trusted the most, my cardiologist, to ask him to sign the form. I printed it off the DMV website. Then I felt completely ridiculous asking for a disabled placard, no matter how desperately I needed it. I even told him how absurd it felt to ask him for it. He signed it without question. I still was not comfortable with the term “disabled” then and I was still trying to pretend I could physically do what I was longer able to do. "Passing" as able-bodied is significantly easier than trying to live with disability, and I was coasting on denial as long as I could. But I asked him to sign the form because I needed to be able to work. I justified it to myself by saying “I’ll only use it on the days I really need it. I won’t take up a spot for someone who really needs it. I’m not technically disabled, and I don’t want to endure anyone’s ridicule or derision because I ‘look fine.’ I won’t use it very often.”

But I was wrong. I was and am disabled. I got the placard and ended up using it every day because it was a life saver. I wished that I had gotten it sooner when I needed it, long before I finally talked to my doctor about it. I wish that worrying about what others would say or the fear that someone would leave a nasty note on my car wouldn’t have gotten in the way of me using an invaluable resource I needed.

There are many who are going through this right now and are debating whether they should get a placard and if they want to deal with the discrimination that can come with it. They probably read these horror stories every day and see the nasty notes people leave on someone’s car because not enough people understand that most disabilities and chronic conditions are invisible.

I imagine there are a variety of reasons people leave notes on cars or make discriminatory comments to the disabled. They may believe they are standing up for those who are “actually disabled,” acting as vigilante warriors protecting a “privilege” that only a select few are “entitled” to. They may believe that people are exploiting the system for personal gain or even feel envy that someone has access to a prime parking spot anyone would want. They may assume that all disabilities are visible and that only individuals who require a mobility aid qualify as disabled.

When someone leaves a note on a car or makes a comment, they are making rash judgments about someone they’ve never even met and enacting a gross injustice on someone who faces daily obstacles already.

This needs to stop.

I count myself  “lucky” because I’ve never had a note left on my car. I had to start using a cane right after I got my disabled placard so my disability was no longer invisible. I have gotten harsh stares or questioning glances when I have used the motorized carts at stores. The last time I drove myself to a store and used the electric cart (it’s been years now since I could do this), an elderly man got angry with me because I used the last one. I needed it as much as he did. I was just trying to pick up my medications without falling or fainting in a store. Now, when I leave the house I have to use my wheelchair almost all the time.

I bring my own chair, thank you very much.

When someone who doesn't "look disabled" uses a disabled placard or an electric cart, we need to remember these points:

 1. Most disabilities and chronic conditions are invisible. Often, you cannot “see” kidney disease, cognitive disabilities, neurological conditions, cancer, prosthetic limbs, mental illness, etc. All of these and more qualify as disabilities, and these individuals are allowed access to a disabled placard to make their lives and the world that much easier to navigate.

2. Police officers, parking attendants, etc. can ask someone to show them the permit that the disabled are required to carry when they use a placard. People do not need to enact their own form of vigilante justice. There is a system in place to make sure that those who use the placards are permitted to use them.

3. No one is entitled to an explanation or “proof” of someone’s disability, especially if you do not know the person. No one is required to “prove” their disability to anyone. Believing that someone is required to explain their disability is pure ableism.

 4. If someone would like to help the disabled, there are better ways to do this than by leaving notes on someone’s car or making disdainful comments. 

You can support legislation that helps the disabled. We have the Americans with Disabilities Act in this country but the law is not perfect. We need more laws and protection for the disabled so that they can enjoy the same privileges and access those without disabilities enjoy. You can spread the word that many disabilities are invisible and learn more about why disability and illness are often considered “invisible.” You can educate yourself about all that qualifies as a disability and see that 1 in 5 people in the U.S. are disabled.

 5. There are essentially no upsides to having a disability. The disabled face hurdles every day that the able-bodied cannot fathom. If you are concerned that the disabled are getting a “privilege” that is somehow “undeserved,” you are entitled to your opinion but don’t act on it. Our society treats the disabled as a protected class and enables them tools to improve their quality of life so they can be full participants in our society. The ADA was only passed in relatively recently, 1990, and it provided legal protection from discrimination and made accessibility in public places for the disabled the law. We should celebrate the fact that those with disabilities have access to tools that improve their lives.

For any of you out there who are putting off getting the placard because you fear the ridicule or are struggling to recognize yourself as “disabled,” I know what you are going through but we must use every means available to us to help us succeed. Even if someone does leave a nasty note on your car or makes a disparaging comment to you, you can keep fighting and you can survive it. It comes from ignorance and we can only hope that someday they will understand the injustice of their act. You are making the right choice in protecting your health.

Don't let anyone diminish the choices you have to make to achieve a higher quality of life. 

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