Monday, September 14, 2015

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 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 

Friday, September 4, 2015

Dreams Deferred, Dreams Discovered

What happens to a dream deferred? Does it disintegrate, never to be replaced?

Sometimes it’s transformed into something new.

About a week ago, it was my one year anniversary of having to stop working and leaving my dream job, a full time professor gig I had worked for many many years to achieve.

It feels like it’s been a few months and a lifetime at the same time. And so much has changed in that time. My condition has declined considerably and my independence has been steadily chipped away. I’ve also learned to make peace with my illness and the world around me in ways I was never able to before. The bad is always tempered with the good.

This is the longest I’ve ever gone without working since I was 15 and the first time I’m not beginning the academic year as a student or a teacher since I was 4. This is brand new territory. If someone had told me five years ago that this is where I would be right now, I would have thought it was pure fiction—the makings of a great book, but not reality.

I’ve been dreading this anniversary. I knew when I saw my friends and former colleagues talking about the beginning of the semester on social media that it would be painful. But the anniversary passed when I was bedridden for weeks so I was distracted by surviving to really be overwhelmed by it. There was an upside to that at least.

I never imagined not being able to work. I never imagined being in this position, but I knew it was a very strong possibility for some time. The health issues started in 2011 and it’s been a decline ever since, and when things really started to change and go downhill in 2013, I knew I was inching closer and closer to this point. I was on an impossible path: working a few months at a time and then having to go on medical leave, over and over. It wasn’t sustainable and I regret taking my health for granted. I always expected to snap back each time I hit the wall and get to where I was before. But each time I hit the wall, I never fully recovered to where I was. Until I hit the wall too many times...

I treat my health as sacred now. My body gives me no other option. I know some of you out there are living this too. I used to avoid reading stories about people who had to stop working. I would see the stories in the health communities I'm in and just skip over them, saying “Nope. There’s no way. There’s no way. That’s not me.”

Perhaps you don’t want to read this because you feel the same. But I want to tell you that you don’t have to be afraid. There is so much that is beyond our control and all we can do is keep up the good fight each day. Do the best you can and whatever the future holds, you can face it like a champ. You’ve survived this long so you can continue to survive. The future isn’t pre-determined.

Statistically, about 25% of people with POTS are unable to work. I'm not sure what the percentage is for Myasthenia Gravis or other conditions. Many of us who are too disabled to work are young (if mid-thirties still considered "young"). We’re at the age when typically you start building a career, planning for retirement, building a family. Too young to have to spend most of our time in doctor’s appointments, rolling the dice with new medications, getting lawyers to appeal for disability benefits, trying to live life from a bed/couch.

When your worst nightmare happens, you accept it and you find a path forward. You have to remember it’s not the end of the world.

The path forward is what I’m focusing on now. My life has changed considerably. Instead of focusing my energies on a career, planning syllabi, working through piles of student papers, reading new research, I spend most of my time managing symptoms now. I plan doctor’s appointments. I coordinate my care. I portion out my medication. I plan for med changes (there are always changes). I use my inhalers at the right time every day so I can breathe. I stick to a strict exercise routine. I read. I write. I play music. I play video games and watch sci fi tv with husband. I see friends and family sometimes. I see how fast I can go down aisles in my wheelchair (who wants to race me?). I sit quietly outside in my yard and ponder the universe. I sing to my cats. I’m trying to make a good life around my limitations. I’m making it work.

A friend gave me shark bag for my wheelchair, Looks badass, right?

I live honestly and truthfully now. I’m no longerliving a lie. My normal has changed and that’s ok. I have a comfy couch at least. 

There is some emotional baggage that comes with losing your career. I won’t deny that. I imagine San Francisco International Airport has less baggage than I do. So much of our identities are tied up in work, career, independence. It’s difficult to unravel that to find out who you are without it and what your purpose is. I’m still trying to figure out what my purpose is.

But I have used some resources and tools to work through the baggage, work through the grief, and find a path forward. Here are a few:

1. I see a therapist. Talking to friends and family is helpful but I can see many of those around me with care-fatigue, the on and on of illness is wearing them down too. Sometimes you can't go to your support network anymore and you need professional support. Dealing with illness is exhausting on all levels and working with a therapist can help you attain vital coping skills. I have worked with one off and on most of my life and I had a really great one for the last two years, until sadly he moved. Now I’m starting over with a new one, which is daunting. Until science can create teleportation technology so I could I see him still, those are the breaks.

2. There are a lot of books out there about how to cope with illness, mental health issues, and difficult transitions in life. I’m working on reviewing each book I read related to illness as suggestions for others going through the same thing. You can find reviews in the “Spoonie Reads” section.

3. You’re allowed to be sad, to wallow a bit, and even to give up sometimes. That’s completely allowed. Working through the chaos illness brings to your life is a process that takes time and patience. You don’t have to make it look easy. You just have to find a way to keep fighting, whatever it takes.

My policy is to never give up when anyone is looking and to always get myself together in time to face the next day. Every day has new possibilities. I’m grateful to have the chance to meet them. Whatever you have to tell yourself to keep going. If you focus on the unfairness of illness and count your disappointments each day, it’s difficult to move forward. There has to be a way forward.

4. Find new hobbies and interests within your limitations. As an academic, I never had time for hobbies. It is an all-consuming gig. I played music but even that became a job as I would play in restaurants and weddings, etc. I even worked as an artist doing children’s artwork for many years. A lot of my hobbies became jobs at some point, so now I’m trying to find some joy in them again for myself. I have other things I’m interested in now that I had no idea I had a passion for while I was working. Now I have time.

5. Use online communities to help you feel less alone. It is easy to feel like you are suffering on an island of pure absurdity when you have rarely diagnosed conditions. Often times, you never meet someone in person who also has your disease. The online communities help you feel less alone, yet I try to use them sparingly now. It can get easy to get sucked into these communities and end up even more frustrated. Take some time away to live life. It’s easy to let illness become your identity, but it doesn’t have to be.

6. Remember what you still have and what you can still do. Besides finally finding acceptance and living authentically, learning how to feel gratitude has been the greatest lesson I’ve learned since I stopped working. My whole life my brain is always saying “what’s next? Where am I headed next?” but now I’m trying to learn how to feel satisfied for once. I try to live in the moment more. I have an overwhelming sense of gratitude that I draw from for strength on most days.

Although my life is very limited, I still have so much. I have an amazing husband, my family is rebuilding our bonds and moving forward despite my mother’s continued decline, I still have my creativity and passion. I am able to finally live within my limitations. There’s still so much to be thankful for.

7. When your dreams are dashed, you also have to make new dreams. Pining for the old dreams that are outside of my physical limitations is a fool’s errand. That will only lead to frustration. So I’m really working on creating new dreams and new goals. Everything takes some adjustment and I’m a professional at adapting at this point. I should put that on my business cards.

When I left my job and finally started to work toward acceptance, I realized that my ultimate goal in life was to be able to live a good life within the limitations of my conditions—instead of constantly having to push myself past my limitations. Whatever that looks like, that’s my goal. Everything else must fit within the parameters of this goal.

The dream deferred can rise from the ashes to take flight again. It just needs some coaxing and some determination. In the next part of this post, I’ll discuss what dreams and goals I’m trying to work toward now.