A blog by Jenny Hill
Greetings readers and welcome to my new weekly blog through United Cerebral Palsy of Central Minnesota (UCP-CM)!
Growing up, everyone told me that cerebral palsy was not progressive. I, in turn, believed that how my body moves and feels was going to stay the same my entire life. Cerebral palsy is not progressive, but my body sure feels different than what it did even ten years ago. Sure, I’m aging, but is something else at play?
After learning this spring that I have degenerative disc disease from a specialist who was fairly unfamiliar with CP, I began to wonder if there was anyone out there who could offer an explanation for my consistent back pain and its relationship to my disability.
I started looking online, and found an interesting phenomenon called Post-Impairment Syndrome. As I understand it, my body is being worn down because of the unique way it has been moving for almost 30 years. Chronic pain, increased fatigue, and depression are all normal experiences for young adults with CP. This is good news…I’m normal, I’m not crazy; and bad news….this is the reality of my life and somehow I’m going to have to deal with it.
Physical therapy has been helpful, but I found myself struggling, especially with the physical demands of my job, until I was thrown a life-raft.
This summer I volunteered at a camp for people with disabilities and met a physician who had cerebral palsy and told me that he works at Gillette Lifetime—A clinic for adults with CP. I had no idea the clinic existed and I eagerly made an appointment.
This fall I met with a team of specialists and discussed my life as an adult in detail. They were compassionate and comprehensive, attending to my physical needs in every arena of life. A physical therapist help me pair down the overwhelming amount of stretching that I had been given to do and offered ideas for incorporating stretching into my everyday routine. I was given a referral in case my back pain reoccurred and needed to see a specialist who was familiar with CP.
I talked with an occupational therapist about the fact that I often can’t find my car in the parking lot, get lost on walks in familiar places, and can’t seem to retain what side of an envelope a stamp goes on.
I worked with a physician and an assistive-technology practitioner to be fitted for custom-made shoe inserts and an ankle-foot orthotic. Finally, I was given a prescription for an ergonomic assessment to be completed at work and the opportunity to follow up with a physician at Gillette Lifetime again this summer.
The appointment was draining! It was hard to discuss the details of my disability for hours in a professional manner with strangers. But the care I received was outstanding and if I have to deal with the new twists and turns of living with CP as a young adult, I now know I have outstanding support. I have a life-raft.
Lately I’ve felt trapped in a conversation that seems to be going on in stereo around me at the lunch table: everyone seems to be talking about having kids: pregnancy, breast feeding, field trips, doctor’s appointments, lunches. It’s a beautiful conversation really. Many of my colleagues have within themselves the capacity to teach children during the day and then turn around and tend to their own families after the school bell rings. This is a capacity I do not see in myself. I don’t know how to enter into this conversation with others, so most of the time I tell myself to be quiet and keep chewing.
There so many challenges that would lie before me if I chose to become a mother, but that might be a bit presumptuous….finding a mate is a whole other issue. Last week I witnessed a man checking me out as I walked from my car into a coffee shop. At first I thought it was flattering; I wondered if he liked my hat that I picked out from Charming Charlies…then I realized he was watching me walk, and then he frowned. I don’t think I even have words to express what it feels like in those rare moments when you realize that in the eyes of the man standing in front of you, you are physically disappointing. It makes me feel speechless and numb, like I should just be quiet and keep chewing.
As I was working my way through my chicken salad on Tuesday, with the baby conversation in full swing, I began to wonder how many days it would be before someone would ask me how I was doing. I even had the vindictive idea to get up from the lunch table, walk back to my desk, pull out a stack of brightly colored post-its, and start a tally. As I was about to slide open my desk drawer, I heard a whisper, Please don’t Jenny. Love keeps no records of wrongs. I realized keeping a tally was a terrible idea, for many reasons, including the fact that I’m not very good at asking people about how they are doing either.
The next day I ran into a colleague in passing who I don’t get to see very often. She immediately smiled, gave me a hug, and asked, “How’s school going?” I answered and then she said, “I’m praying for you, for your classes then for your husband.”
I walked away, glad that I refrained from marking my post-it, and happy, that if I had, it would already be time to crumple it up and throw it away. Perhaps I should keep another record, one that keeps track of how often and how deeply I am reminded that I am loved.
When you hear the word “massage,” what words come to mind: Relaxation, comfort, release? Generally, I think of these words, but in reality the words that actually ring true for me are concentration, naked, and weird.
However, I do feel good afterwards, so during my birthday week, I treated myself to a massage. The routine is always the same—lie on the table and try not to jump. Relax Relax Relax! I silently scream to myself as the masseuse works her magic. I’ve had a few massages; no one has ever had the moxie to mention my discomfort until recently.
She was about a third of the way finished when she stopped, looked at me and asked, “Do you have a difficult time relaxing?”
Ha! I wanted to laugh at her, more than that lady! I could even produce paperwork that says I’m a spaz! But instead I just smiled and said, “Yes.”
“I can tell.”
She went on to explain her opinion that receiving regular massages may help my body learn to relax. Although I don’t have full muscle control, the muscles I do control are probably working overtime to compensate for my spasticity. Massage may help those controllable muscles relax, reducing the overall tension that I experience in my body.
Her thoughts intrigued me, and although I have yet to schedule another massage, I went home and did some research on the Internet. There are many sites which tout the benefits of massage for people with CP. The most interesting thing that I came across though, was this YouTube video featuring Matt O'Meara, a young man with CP whose gait was impacted after receiving regular massages. There’s an added twist: The massages happened in -20 degrees Celsius weather! Perhaps there is hope for us Minnesotans! If nothing else, it’s an interesting video to watch if you have 6 minutes to spare.
Do you think massage therapy has an impact on CP? What has been your experience?
It’s hard to notice things that aren’t there, but one day I suddenly realized that I hadn’t fallen once all winter! I know winter isn’t over, we’re not even half-way through March, but considering I usually fall at least once a month, this seems reason to celebrate…..and to wonder.
How could my falling possibly change from a monthly occurrence to never? Sure, some of it might be luck, but here are three things I have found to have helped me this season:
1. I have been wearing a carbon-fiber brace, shoe inserts, and tennis shoes as much as possible. This might not be the most stylish form of foot wear, but I have found it to be the most stable. When I wear them, I feel more supported, secure, and balanced.
2. I have been using my accessible parking permit everywhere, all the time, with very few exceptions. I used to only use my parking permit on days when the weather was poor, but I’ve found that it’s best to use it all the time. This insures that less ground needs to be covered, which can help prevent falls, especially when carrying something like a purse or lunch bag.
3. This is the hardest one….I’ve been learning how to ask for help; this can be a source of both humility and blessing. One day I opened my car door, placed my feet on the ground, and realized I was in trouble. The parking lot was an ice rink. I swallowed my pride and asked two beautiful people to escort me to the door. I made it through the day injury free and thankful!
I realize that many of you may already be doing these things and are still falling. My heart goes out to you. There’s always this strange mixture of wanting no one to notice and hoping that someone can immediately offer you the help you need. It feels helpless and unexpected to fall. Your self-control suddenly escapes without asking for permission. Find the courage to pick yourself up in these situations—you’re not alone.
I was recently invited to a custom made jewelry party. I slipped into the bathroom to take a look at a locket I liked in front of a mirror. I struggled to adjust the chain and in doing so, the locket fell and smacked against the porcelain sink. Moments later, I realized I had cracked the jewelry and waved good bye to $24.
As the evening continued, I worked to assemble a necklace, but realized that that everything I was intending to purchase was well over $75. Beyond my budget, I decided to adjust my plans and go with a simple owl charm on a chain. Back again in front of the bathroom mirror struggling once again to make adjustments, my owl, and 8 more dollars, fell down the drain!
At this point, I realized it was time to confess my sins and call it a day! After fishing around with a tweezers while a colleague made a call to her husband the plumber, we came to the consensus that the evening was going to end with a metal bird sitting in the drain of the hostess’ sink.
By this time, everyone at the party was in hysterics, including myself. I mean it’s unbelievable right?! How did that happen?! Their laughter was kind and many said, “I’m sorry,” but inside I began to crumble. I insisted on paying for the items that I had broken and lost, and then went home and pondered.
Sometimes living with CP is just…awkward. I could have tried to explain to everyone that I wasn’t trying to be funny, or that I’m really not a klutz. I could have laid bare the honest reality that I have a very real disability that affects both my hand-eye-coordinate and my fine motor skills. But, would that have helped? I had already fallen from “social grace,” so I was quite certain that mentioning my disability would have just made the situation worse. The graceful thing, it seemed, was to go home and “deal with it."
So, here’s my question: When is it a good idea to explain yourself and when is it best to keep silent and laugh with the crowd?
This summer I was invited to volunteer at a Joni & Friends Family Retreat which offers an oasis for families who have a member with a disability. Our main meeting room was an auditorium called The Anchor which had tiered seating. I walked in the first day and immediately noticed a problem: there were no railings. Suddenly, I found myself stuck. I could make it down the steps with assistance, but for the rest of week, I found myself sitting in the back.
I’m a front row girl. I like to up where the action is. I like to be seen, and the teacher in me knows that the rate of retention is higher when you sit in the front. But, I was in the back that week, separated often from the people I came to camp with. I wasn’t just seated towards the back of the room I was seated behind the platform that was constructed for people who use wheel chairs.
I found myself distracted, unable to see, and crowded. What’s worse, I began feeling sorry for myself. It’s hard to walk into a room and suddenly realize that you can’t fully participate because the way the room is constructed. So many places have railings that this took me by surprise.
What good could come of this?
Day after day, a man was wheeled in front of me to hear the sermons. As I sat behind him, I began to wonder, “What was his name? What was his story? How tall is he?” He happened to be in my small group break out session afterwards. I had the opportunity to talk to his family and learned they lived just minutes from my house. I reached out to him on Facebook after camp and we have since become good friends. We’ve spent a lot of time together this year and our friendship has become an incredible gift.
It’s hard when one path is seemingly blocked in a life due to a disability, but incredible to behold how a change in course can open the door to opportunity.
I’ve been thinking a lot lately about the word disability. What is the focus of that word? Is it upon what an individual cannot do? I recently learned of a student organization at the College of St. Ben’s / St. John’s University who use the term DIFFERbilities. I like it. I think it suggests that when encountering a person with a cerebral palsy, for example, we should look through a different lens. One that hones in on the idea that living with a disability can be formational. It can be the very thing that provides a person an opportunity to develop skills, talents, and abilities they wouldn’t normally otherwise explore.
I am still developing my thoughts on this idea, but thankfully a friend sent me a link to a TED Talk by Jamie Shepherd who articulates this concept well. She argues that having a broken body doesn’t mean being a broken person, and “If we are to move towards our collective bliss, it's time we shed our focus on the physical.” Enjoy this talk; I couldn’t have said it better myself!
I get lost walking in my neighborhood that I’ve lived in for 5 years. Sometimes I turn the corner in the one-level elementary school building where I work and am uncertain how to get back to desk.
As hard as I try, I can’t seem to retain what side of the envelope a stamp should go on. All too often, I walk down an isle in the grocery store and swear they’ve remodeled. I find these skill deficits embarrassing.
I try to hide the fact that I don’t understand the physical layout of my surroundings or how to navigate from one place to another. Occasionally, I get a good laugh out of it, but when it comes to driving, I often come face to face with frustration and the vulnerable feeling of being lost and uncertain how to get to my destination—even if I’ve been there many times before. Is this normal for people with CP?
I brought this up at a recent appointment I had at Gillette this fall. While they were intrigued with my symptoms, they weren’t surprised. It may have less to do with the fact that I have cerebral palsy and more to do with being born premature. Whatever the cause, an occupational therapist had an excellent suggestion: Christmas is coming up; maybe I should ask for a GPS!
Santa Claus was good to me. I unwrapped a Garmin nuvi 50 LM that was sitting under the tree with my name on it. I’ve tried it out a few times while visiting friends over the holidays and have been very pleased. It has been the help that I’ve always needed but never knew how to ask for. It is like having a co-pilot come along as I journey in the car. I don’t have to stress about memorizing routes or missing exits. The map on the screen actually makes sense to me because it’s dynamic. I move my car and it follows along. Having a GPS makes me feel more adventurous and safe in the car.
I’m more willing to go more places and less afraid I will get lost. The Garmin is helping me find my way.
All summer long, I wanted to climb a rock wall. After reading Andrew Clements’ Extra Credit in early June, I began to wonder what it would be like to scale a wall, propelling myself upwards. I caught myself eyeing the wall at a local community center, sizing up the task. Occasionally I would let my imagination take over, closing my eyes, envisioning myself reaching the top with a final burst of energy! So, when my fellow camper looked at me this summer and said, “I want to climb the rock wall,” I looked back at her with confidence and said, “Me too!”
The next afternoon I found myself being strapped into a harness that felt less like a brace and more like an over-sized diaper. I adjusted my helmet and peered up at my opponent. “I may not make it all the way to the top.” “Oh, you’ll make it to the top,” my spotter countered. I stepped closer the wall, hoping he was right.
“On belay?” “Belay on.” “Spotter ready?” “Spotter ready.” “Climbing.” “Climb on!” I looked ahead inspecting the colored holds, bolted to the wall. Deciding which ones to pick was like beginning the climb up a tree. I reached for two slightly above my head and hoisted myself up slightly until my feet found their footing. I was on the wall! Slowly, one by one, I inspected the holds to the sides and above me, carefully choosing my next move. I stretched wide like a kid on monkey bars. Just when all four limbs found a new position, help would come from below as my harness lifted, shifting my weight into place.
This routine went on for a few minutes until…. The adventure continues tomorrow!
This summer I took a college course were we went on a field trip to Pilot Knob Hill—a sacred Native American site. Getting off the bus, I noticed the route we were taking started with partially paved road that went on for a ways and then abruptly ended. Walking the first leg of the journey was easy, but beyond the paved ground was undeveloped space: rocky and uneven. I knew I couldn’t continue alone.
Seeing my need, my professor quietly appeared at my side and like a gentleman, offered me his hand. As we walked, I noticed that the harder the terrain became, the more aware and grateful I was of his tightening grip, holding me steady, helping me walk. This moment had become a picture of grace.
It seems that we are being continually led into uncharted territory, where others are needed to come alongside us and offer their hands. The harder life gets, the more we find ourselves being held fast and secure.
How about you? Where have you seen grace abound? If you were asked to write a metaphor or compose a scene, how would you picture a gracious grip holding your life?
This week three of my friends and I met in a park for a picnic. An hour later, a spouse showed up unexpectedly with a camera wanting to take a picture of us. We all erupted in spontaneous protest. “No, don’t take a picture!” “My hair’s too poofy!” “My pants are too big!” “I’m wearing a T-Shirt!” In the end, after some coaxing, we all gave in and posed for the camera. Our collective reaction to the photo shoot reminded me of how fixated humanity seems to be on physical appearance---I included. I love dressing up, especially for church, I love finding just that right pair of shoes to top off an outfit, and I’ll never pass up the opportunity to add a little bling to my wardrobe when I know it will earn me a compliment. It’s often, however, that I’ll look in the mirror admiring that my make-up is “perfect,” and be reminded that I am not.
Living with a physical disability has changed how I view myself and other people. When I meet someone for the first time, I’m hoping they’ll like me. I’m also hoping that they will have the courage and the patience to see my exterior, but also to look even further, deep into the heart of who I am. In turn, I often find myself spurred onto a similar treasure hunt. Knowing all too well that truly “seeing” a person takes more than a first impression, I try to dig deep, uncovering what beauty lies beneath the skin. This is not an easy task; it takes time, patience, and repeated interaction.
When the person has a disability, this task can become more challenging, but at the same time even more compelling. Physical disability, I’ve found, is often perceived in sharp and unexpected contrast to what people expect a body to look like, but even initial shock or a subtle startle can provide the extra motivation necessary to enter into a deeper realm, one that carefully peers into the human soul.
I recently came across an intriguing quote from Joni Eareckson Tada. Joni is a quadriplegic and head’s up an international ministry to people with disabilities.
“Most churches have difficulty in ministering to the handicapped simply because of some basic fears and lack of awareness. As we move past these attitudinal barriers and misunderstanding, we’ll discover the joy of caring for someone simply based on the preciousness of their souls, not on their physical attractiveness and intellectual capabilities or social position.”
This week… Challenge yourself.
When you meet someone new, whether they have a disability or not, take a moment to look beyond their exterior, past the things you don’t understand or find yourself afraid of to discover the beauty within; seize the opportunity to behold “the preciousness of their souls.”
Quote Source: http://www.memphis-umc.org/accessibility/hearts_in_motion.pdf
“When you meet me, you’re going to notice that I walk with a limp.” I was talking to a match I had been paired with through eHarmony for a while and it was time to meet for a date. “The reason I walk the way I do is because I have very mild cerebral palsy. I don’t want you to be surprised; I think you should meet me before you make any judgments.” The phone was silent for a moment. I held my breath, waiting for his response.
“That’s okay Jenny. I’m not perfect either. I’ve had 13 facial reconstructive surgeries to repair the muscles in my face that never developed. I’m also missing an ear.” Now it was my turn to be silent.
Is there beauty to be revealed within physical deformity, or is it all gross anatomy? Our culture seems to be both fascinated and repulsed by this subject. The World Press Photo of the Year in 2010 was of an Afghan woman “whose nose and ears were cut off by her husband.” Meanwhile, Facebook banned the posting of pictures of a baby who was born with Anencephaly which was the cause of major birth defects.
If beauty is indeed found within in the eye of the beholder, what happens when beholders don’t like what they see? Does the beauty within the beholden cease to exist, or does it remain, shining through, independent of perception?
In a recent book I read, The Gift of Pain, Dr. Paul Brand tells of his many interactions working with patients who had leprosy, a disease which often results in severe facial deformity. One patient, John, suffered from facial paralysis making it virtually impossible to smile. One of his eyes was partially sewn shut in an effort protect his deteriorating sight. Dr. Brand encouraged him to go in public, to interact with other people. In response to this invitation, he yelled, “No one likes an ugly face!”
Some scientists would argue that this gentleman is right. Beauty, they say has to do with symmetry. Somehow, we’re “hardwired” to like eyes that are a certain width apart and heads that are of a certain length. Watch the video featuring Beyoncé Knowles here: http://www.youtube.com/watch?v=o7z25sN1rZ4
I won’t argue with Beyoncé Knowles isn’t beautiful. (If for nothing else, she has made it vogue to be a single lady!) But this video raises a bigger question, aren’t all people beautiful just because they’re human? Are there really times when it is appropriate to judge one person as beautiful and another as ugly?
When I look at People Magazine’s list of “Most Beautiful People,” or their annual judgment of who is the “Sexiest Man Alive,” I see two things: flawless perfection and hidden pain.
But, when I consider a person who lives with deformity, I think the reverse can be true. Their pain is very visible, and their beauty is hidden. I believe it is here, upon these lives, that a beautiful canvas of redemption can be woven, revealing beauty in the face of pain.
Consider the two men in this blog entry: John, the man with leprosy, was embraced by a man he met out in public, and was offered employment in the man’s factory. He went on to win a national award for the work he produced.
As for my date, his solo ear has given him the gift of perfect pitch!
Resources: Much of this content was based upon her.meneutics, Christianity Today’s blog for women: http://blog.christianitytoday.com/women/2012/05/facebook_grayson_walker_and_a_1.html#more
The book I mentioned is The Gift of Pain: Why We Hurt and What We Can Do About It by Dr. Paul Brand and Philip Yancey. (Zondervan, 1997). Photo Credit: http://www.fanpop.com/spots/the-phantom-of-the-opera/images/219796/title/poto-fanart
“I hate the phrase ‘cerebral palsy.’” I began to weep openly in front of my counselor. I brought my hand up to my face covering my mouth to muffle the cry that I could feel rising my throat. My eyes started to overflow with tears, spilling down, wetting my cheeks. “I can’t even say the words.”
Surpassed only by the fear of snakes, public speaking still ranks number two on the list of America’s top fears according to a recent Gallup poll. I too, hope that I never come face to face with a reticulated python, but give me microphone and an audience of any size and I’d be happy to articulate my thoughts on any subject!
During most of my formative years, I felt a strong sense of shame surrounding the fact that I had an incurable, unchanging, physical and very public disability. Some part of me thought that if I didn’t ever talk about it, then maybe it wouldn’t exist. After working through my issues with a counselor and accepting some invitations to speak, I am finding my voice and growing in my willingness to share my experiences with others.
Last month, I was asked by a colleague to Skype with two classes of 5th graders who had recently read the book Out Of My Mind by Sharon Draper. The book’s main character, Melody, is an 11-year-old with severe CP who is unable to speak due to her disability. My colleague wanted to give her students an opportunity to meet someone who shared the same condition as the book’s main character yet had a completely different range of functionality.
So, for a half hour, students asked me questions about what life was like with CP. What does it feel like? What has been the hardest part of your life? What did you like to do as a fifth grader? Their questions were honest, asked with concern, and demonstrated an interest and growing understanding of what it must be like to live with CP.
This experience inspired me. I always find it deeply personal to talk about living with CP and the pain I have experienced. Every time I speak, I feel like I am being asked to give part of myself away. However, it seems to me that a vulnerable speaker who is willing to share in front of a receptive audience is what ultimately leads to understanding. It helps to bridge the gap, helping others to gain insight into an otherwise narrowly shared experience.
This is why I have decided to launch a speaking page on my blog. I welcome the opportunity to share stories, experiences, and insights with Christian groups and to students in schools. Check it out for more information: http://jwalkinguphill.blogspot.com/p/speaking.htmlor contact me: email@example.com.
The Gift of Pain “You’re no stranger to pain.” I looked at him, taking in his observation. Like it or not, he was right. Pain and I have become well acquainted.
If I were honest with myself, I would admit that I have experienced inconsistent low-level back pain for about a decade. It’s usually a dull ache that comes and goes. “It’s probably just from your CP,” I was told once by a physical therapist. Research confirms this suspicion. One study compared adults with CP to those without and found that nearly one-third of the adults with cerebral palsy had chronic pain, vs. 15% in the general population. Back pain was the most common in both groups.
Lately, my pain has transformed from a dull ache to at times a stabbing pinch and travels down my leg. MRI scans revealed that I have Spondylolisthesis and Degenerative Disc Disease. Medical terminology aside, I’ve been experiencing a little more pain than normal.
Philip Yancey, in his book Where is God When it Hurts says the following: “Suffering produces something. It has value. It changes us.”
Pain, I am learning, is a gift. Marcel Proust is quoted as saying, “Illness is the doctor to whom we pay the most heed: to kindness, to knowledge we make promises only: pain we obey.” Not something to be ignored, pain can be the compass that ultimately points us in the direction of help and healing.
Pain has helped me gain perspective, causing me to become more grateful for many things: over-the-counter pain killers, access to health care, health insurance, compassionate physicians who have devoted their professional careers to caring for the back, and having a physical therapy clinic next to my work.
Pain has helped me become more diligent with stretching. I’m not usually very dedicated to it; it takes time and is a slow process. I know it’s an important daily task, but often falls into the pile of, “Things I should have done today.” This incident has caused me to remember its importance. I’m sure it will pay off in the long run.
What has suffering produced in your life?
How have you responded to your pain?
Last night I was forwarded some information about a breaking news story. A 10 year old boy with autism was being bullied in his classroom by his teachers. You can read the story or watch the video here: http://www.myfoxphilly.com/dpp/news/local_news/nj-father-records-teachers-bullying-his-autistic-child. In response, the boy’s father, Stuart Chaifetz, made a YouTube video (http://www.youtube.com/watch?v=tfkscHt96R0) expressing his opinions, calling for a public apology, and hoping this incident will start a wide-spread conversation about bullying. His video already has over 3 million views; his Facebook page (https://www.facebook.com/NoMoreTeacherBullies) has over 35,000 “likes.”
Mr. Chaifetz, I am sorry as a public educator and as a person with a disability that your son was treated like this in a classroom. As I thought about your story today, I am reminded of what I am called to do as a teacher. Here are my professional and personal priorities, in this order:
1.I am called to love my students. Bell Hooks, contributor to the book The Heart of Learning: Spirituality in Education writes, “So think first about how you can love your students. Do this even before you think about how you’re going to teach them. Think: How can I love these [students]…that I see in the classroom? What practice of compassion can I bring to the moment that is so fine-tuned that I can accomplish in one day that which might ordinarily take weeks, months or years to do?” (p. 125, 1999).
2.I am called to see my students. Sometimes students feel neglected and excluded from their peers and the social community that exists within the school environment. As teachers, I believe we are obligated to see our students, perceive their needs, and assure them that they are valuable, precious members of the human race. Everyone has a voice that deserves to be heard.
3. I am called to teach my students. Tax payers give sacrificially to support the local school system. I must teach the children in my community to the best of my ability—not just because I am paid to do it, but also because I am strongly convicted of the value of investing my life fully into the next generation. If we want to raise children to become compassionate and competent, we must model this behavior ourselves.
Resources Glazer, S. (Ed). (1999). The heart of learning: Spirituality in education. New York, NY: Penguin Putnam Inc.
My friend looked at me and said,
“Jenny, we’re going downtown this weekend. I’ll drive, but since you’re coming with us, I was wondering if you could bring your….
[insert awkward pause and silence]…” “Rock Star permit?” I offer.
Exhale. Sigh of relief. “Yes!” She smiled. “Your Rock Star parking permit!”
Recently I had a friend text me this picture: http://www.flickr.com/photos/torley/1388881550/.I posted it on Facebook on Sunday with the caption, “To be honest, this is how I wish the accessible parking spaces were actually labeled!,” and quickly received over 20 “likes.”
Thanks peeps. I often feel weird about the fact that I own and use a Handicapped Parking Permit. It gets especially awkward when I’m attending an event for young adults or kids—the blue and white zone is usually empty and my beautiful Honda Civic sits there all alone. I feel like EVERYONE knows I’ve arrived and where I’ve parked. I’ve definitely gotten stares while parking at grocery stores. I think people are expecting to see a little old lady, but instead see a smiling young woman. What’s up with that?
Here’s the deal… The main reason that I have a Rock Star parking permit is that I fall often. This is primarily a concern in the winter, but I even fell yesterday walking on familiar territory. Walking shorter distances can reduce the chances that I’ll have an incident.
The other compounding issue is that I tend to fall more frequently when my arms are full. Parking close to the door allows me to easily bring a cart close to my trunk to load or unload items. It’s much easier to do this at work and around town if my car is in the front row.
You might not notice, but my depth perception is slightly skewed due to my cerebral palsy. Parking has always been a bit of a challenge for me, but is a skill where I have seen some improvement. When I first began driving, I used to take up multiple parking spots because I had a hard time aligning my vehicle in the allotted space. Rock Star parking spaces tend to be much wider and have an access isle. It’s a sweet feature.
Finally, I lose track of things and I get lost easily. Sure, I can’t find my keys, misplace my cell phone, and have made a few wrong turns, but I also lose track of big things too. While walking one afternoon in my neighborhood where I have lived for four years, I wasn’t certain what side of the road my house was on, or how exactly I could get home. I got lost this year in my one-level elementary school where I have worked every day since 2008. I can’t find my car in a parking lot unless I think REALLY HARD about where it is located. Parking in a designated area puts my mind at ease. In the end, I have found having a Rock Star parking permit has made my life a little easier and surely has prevented injuries.
But, in truth, I wouldn’t park there if I didn’t have a need. I’d rather blend in. Then again, that’s another reason why it should be called “Rock Star parking.” They’re especially reserved spots for those who are willing to stand out and make their mark on the world.
I recently had the opportunity to have an in-depth conversation with a friend of mine who also lives with a disability. As we were talking, I realized something very unique was taking place…we actually could relate to one another’s experiences. I found it refreshing, nourishing even to find someone else who could really understand on a personal level what it is like to struggle with a physical disability. Then I began to wonder: Why was this experience so rare? On the reverse, why is so challenging to articulate my experiences to people who have able bodies in a way that resonates?
Living with a disability is not a largely shared experience. According to the U.S. Census Bureau, just over 18% of Americans report having a disability. Only about 2% of the populations of those who have disabilities fall into my age range of 25-44. (No wonder it’s hard to find someone to talk to!) You can read the full report here: http://www.census.gov/prod/2008pubs/p70-117.pdf.
Living with a disability often affects people in profound ways that are evolving and difficult to describe. I find that I often have to spend hours in deep thought over my life’s experiences before I can come up with a simile or a metaphor that effectively communicates my thoughts, feelings, and experiences of living with cerebral palsy. Part of the challenge, I believe, is that having a disability can affect multiple areas of your life, be deeply personal, and continually evolving—even if your symptoms remain unchanged. As a child, I was mainly concerned with fitting in with my friends, managing fatigue, and learning how to drive. I struggled with my self-esteem and was looking for my niche in the world. As a young woman, I have many friends and a driver’s license I am finding an increasing sense of identity in my profession. I still struggle with my self-esteem from time to time (Let’s be honest, who doesn’t?), but I find myself wondering more about the possibilities and challenges of marriage and family. I imagine my focus will shift again as I age.
So much of the struggle of living with a physical disability is internal. As I was talking with my friend, it struck me that perhaps the biggest challenges we will face in life will not be physical—they will be emotional and spiritual. It’s not so much about struggling to walk up and down stairs, needing to ask for help to accomplished everyday tasks, or facing disappointing physical limitations as much as it is the person you become in the midst of the challenges you face. These trials can produce in people qualities that are not always easily seen: shame, anger, discouragement, humility, courage, perseverance, hope.
Questions to Consider:
For those of you who have able bodies: What do you find most challenging to understand about the experience of living with a disability?
For those of you who live with a disability: What do you find the most challenging about relating to others about your experiences?
For everyone: How can we bridge the gap?
“So, you have two children, right?” I asked with interest. “We have two children now.” He paused, looking down at the floor. “We had three children. My wife had some troubles during her first pregnancy. Our daughter didn’t live past six months. She would have been a senior in high school this year.” Our conversation stopped for a moment. We both took a breath to honor the mystery and beauty of life.
Today, March 26th, is my 28th birthday. It seems like every year, I find myself pondering the details of my birth, thinking about how 3/26 was not supposed to be the day I was to be born. Although I love having something fun to celebrate as winter turns into spring, I find myself thinking about how I should have been born in the summer. I think about how I was born premature, weighing 3lbs, 2 oz at 29 weeks.
This year, I’ve spent some time interviewing my parents, learning more about the story of my birth. I’ve also been reading about premature babies. I learned that, “In the 1980s, doctors could save only 1 in 10 [preemies]; today, that number is 9 in 10.” When I let the reality of those numbers sink in, I had to stop for a moment and reflect.
Sometimes I take my life for granted.
Life, I began to realize, is the greatest gift I have ever been given and I am so grateful for it! I know sometimes that life can be discouraging and full of struggle, and while that is hard, I believe there is beauty to be found in the midst of pain if we’ll look for it, and wonderful lessons to be learned as we endure the trials of life.
Will you join with me today to celebrate life? Please consider taking a few moments to do the following:
1. Take a few minutes to think about your life and all that you have to be thankful for.
2. Consider some of the challenges you are facing right now in your life. What are you learning from your circumstances? Where are you challenged to see beauty in the midst of pain?
3. Hug, kiss, call or e-mail someone close to you today and tell them how much they are loved and how glad you are to have them in your life.
I surveyed the stairs that were leading to my friend’s door. They were covered with ice and had no railing. I began to wonder, how am I going to make it into their house? While looking around for an answer, two gentlemen come around the corner from the garage to rescue me from my predicament. One says, “Jenny, let me help you up the stairs.” The other says, “I’ll get the door.”
“Your arm, Miss,” my friend extends his elbow for me to grasp as we head up the stairs. I look at him and smile, “It’s like we’re at the prom! ‘Jenny Hill escorted by…’” Suddenly, in that moment, I am transformed from a casual visitor to an honored guest.
Pleasantly surprised by this incident, feeling so honored by the kindness of my friends, I began to wonder: how can we show honor to people with disabilities? I am sure there are several ways, but here are three that come to mind:
1. We can honor people with our language. In college, I learned about using person-first language. It’s a simple rearranging of our sentences helping us to see and honor people as human beings ahead of their disabilities. For example, instead of saying, the blind girl, or the deaf boy, say the girl who is blind or the boy who is deaf. I also recommend the use of the word disability and accessible in lieu of the word handicapped. There’s a widely held misconception that the word handicapped actually means cap-in-hand, referring to the need for those with disabilities to beg for money. The word handicapped actually speaks to leveling the playing field in sporting events so everyone has an equal advantage to compete. Unfortunately, this word’s history is not widely known.
(Read more here: http://www.snopes.com/language/offense/handicap.asp)
2. We can honor people with our priorities. I think it is so important to get to know people for who they are as individuals, and then out of that relationship, learn how to meet their needs. I feel loved and honored when family and friends attend to small details for me without being asked because they have known me long enough to know my needs. I see this in many ways: when a seat is waiting at the door for me to sit in while I take off my shoes, when colleagues walk in quietly to the media center so I don’t startle while sitting at my desk, when friends offer to carry my food for me while walking down stairs or outside at a social gathering because they know I can’t balance everything, and when people offer to drive when going to the Cities because they know I’m uncomfortable with the traffic.
3. We can honor people with our attention. The issues surrounding disabilities can be challenging to understand and difficult to discuss. However, I think we can all learn so much from taking the time to hear other people’s stories. Stories provide a window into the world of disability for those who are able-bodied and a mirror for those who have a disability from which they can see themselves. This is why I believe they have the unique power to offer both insight and hope. Want to read a great story? Here’s one about a family who has three children with cerebral palsy. They are one of 18 families in the world to be in their unique situation, but I don’t want to give away all the details…read the full story here:
http://www.thedoor.org/resources/documents/MarAprMay_2012_at_the_door.pdf. Resources Windows and Mirrors: http://dsq-sds.org/article/view/854/1029 Picture Source: http://www.thisweeklive.com/2011/05/16/lakeville-north-2011-prom-grand-march/
“What do I like to read?” My friend looked at me, repeating the question I had just posed to him and then looked away to think for a moment. “I don’t think I’ve read an entire novel since the ‘90s…”
It’s no secret—I love to read! With February tagged as I Love to Read Month, I’ve been considering the reason why I’ve been drawn to books ever since I sounded out all the words in Jan and Stan Berenstain’s Ready, Get Set, Go! I think the answer lies in the fact that books have always given me hope.
As a child… My parents needed to find a way to explain the hospital environment to me so that I could prepare for the experience of undergoing major surgery. One afternoon, while spinning the wire rack at the local drug store, I came upon a book entitled A Visit to Sesame Street Hospital where Grover needs a tonsillectomy. I learned from the illustrations that I too would soon be encountering friendly adults wearing masks and gowns and eating food off of tray tables. While different from life at home, I had nothing to fear! As memory serves, I entered the operating room with a smile on my face!
In fourth and fifth grade… My self-esteem began to plummet as I struggled to make friends at school. One evening my dad came home with an article published in Newsweek written by a sophomore at Wayzata High School named Angie Erickson. Her twin sister Stephanie was born with no birth defects, but Angie has cerebral palsy. Angie spoke to the tenacity, resiliency, and determination it was taking to endure people’s comments, actions, and exclusion towards me because of my disability. Then she posed an interesting thought: perhaps those who are acting this way are hurting more than I am….
In middle school… A courageous woman named Gianna Jessen was interviewed on Focus on the Family telling her story of her mother who chose to have an abortion at age 17. When the saline injection she was given forced her into labor, Gianna was born alive and, as a result, lives with cerebral palsy. The book sat by my bedside and I read it over and over again, intrigued to hear the story of another girl with CP, fascinated with the fact that she knew exactly why she had a disability, because the exact cause of CP, for so many people, is unknown.
Shortly after the Columbine High School Shootings… I sat at my own high school, reading Frank Peretti’s Wounded Spirit. This book was written partly in response to this tragedy, but also to share Peretti’s own story of pain and healing growing up with a highly visible condition called cystic hygroma. At the end of the book, Peretti makes an audacious claim: Adulthood may actually bring some relief to the awkwardness of being a teenager. I held on to the hope that there was life after Physical Education class, I wasn’t going to be swimming in a pond where I was being constantly compared to the physical abilities of others forever!
Towards the end of graduate school…. I wrestled with the reality that I was going to have cerebral palsy for the rest of my life, and wondered what its implications were going to look like as I began to journey into adulthood. While reading the book Waking, I felt as if it’s author, Mathew Sanford, (fellow Minnesotan and quadriplegic) pulled up a chair and began to mentor me on healthy living as an adult with a disability. I learned that I didn’t have to feel pressure to see my disability as something that needed to be conquered or overcome, but rather a reality that can simply be accepted. With every step I take my body is working as hard as it can, even in the midst of challenge, to move exactly as it was designed. This unique grace is in itself, beautiful.
Today… I am working on my own manuscript, telling of my with cerebral palsy. Someday I hope my story can offer hope to someone else the way so many others have already done for me. Why do you love to read? What books have you read which have offered you hope? Have you ever read a book where the characters helped you understand your life from a clearer perspective? Has your own reading journey ever compelled you to write?