Yep, someone actually said that.

The other day, my cousin, Shekinah, shared an article where people of different races share the inconsiderate things people have said to them or asked them about their race. Having the name that she has, and being Caucasian, people have said some bizarre things to her, and how her name ‘doesn’t match her ethnicity’. My husband, kids and I being a biracial family, people have said some pretty crazy things to us too.

But what really came to my mind were the memories of the crazy things people have said to me regarding my disability. So I figured I’d share them with you and we can all have a laugh.

I’ve divided the outrageous statements, and my reactions to them, into three main categories of who I hear from the most. These are bank customers (from when I worked at the bank), the grocery store, and social gatherings. Ready…. Go!

Bank Customers:

“Why are you hopping around like that?”

After informing him that I always ‘hop around like that’, I excused myself to the restroom.

“Why do you limp? Did you get bit by a dog?”

Seriously wondering what was going through his mind when that was the first conclusion he jumped to.

“Your legs are fake, right?”

Um…

“I saw another girl in a wheelchair the other day. It was kind of strange, because she was pretty like you are.”

Read: It is strange that a girl in a wheelchair would be pretty. Much less two of them.

Um, thanks… I think.

“Tell me the truth. Are you faking the limp to get people to do stuff for you?”

I said yes.

“It sure is nice of them to let you work here.”

Yes, it’s a charity job. I don’t do any actual work.

“Back in my day, you wouldn’t have been allowed to be around the rest of us. You’d have been kept in a special home.”

Well I better thank my lucky stars.

“Where’s the cripple girl that used to work here?”

I didn’t have my wheelchair that day. And yes, he asked me.

Grocery store

“I know a guy that has crooked legs like you. He’s still a good parent, just like you appear to be.”

Because I have defied the odds by having a handicap and being a good parent.

“Do you get good grades? Well, at least you got something going for you”

I was 14. My interpretation? ‘You walk funny and you’re not pretty, but someone will love you for your mind.

“You should probably see a doctor about that. I bet you broke something.”

I laughed out loud. It was a reflex.

“Must be nice to sit down all day.”

He had a cocky tone that implied I was lazy. Oh, if you had any idea…

“You need to make sure you get enough exercise.”

This was said by a complete stranger, who was about 30 pounds overweight. Thanks man, it’s a good thing I have you to keep me on track.

“Wanna race?”

I get that one at least once a month. It’s never as funny as they think it is.

“Do you know you’re in a handicap space?”

I get this almost every time I leave the house. Only occasionally do they actually say it. Usually they just give me dirty looks.

Social Gatherings

“They let you have a driver’s license?”

Read: You are in a wheelchair. You should not drive. It is a danger to society.

“What do you need a car for?”

See above.

“Oh you limp? I hadn’t noticed.”

We had just walked half a mile. This is like starting a conversation with someone of another race by assuring them that you’re not prejudice.

“You have kids? I’m surprised they let you adopt.”

My kids are not adopted.
But I would like to adopt some day. Why the assumption that I could not have kids, and that I should not be allowed to adopt?

I know my friend Kate, who has Spina Bifida, has had similar experiences, so I asked her to share some. To start out with, we’ll never forget the time I was pushing her in her wheelchair through a parking lot, and a lady, who was at least 30 (old enough to know better), was so busy staring at us that she ran straight into a lamp post. We both busted out laughing. We couldn’t help it.

Kate’s response:

20-30 year old guy in a parking lot: “You should let someone who actually needs it use that spot.”

(I wasn’t using my wheelchair.)

Older lady: “Walking is better for you.”

Walking through a parking lot (more than once): “Did you break your leg?”

A few different people: “You can drive?!”

Middle aged man: “Must be great to be lazy.”

Random guy: “You don’t need that.”

(I’m going to assume he meant my chair, but as he just walked away after he said it, I really couldn’t tell you.)

For the record, I ‘m not writing this post because I am angry (though I admit I was irritated by a few of them). I understand that some people were just curious, and did not express themselves correctly. Others were just ignorant and rude.

I choose not to be offended, for the most part. We can take offense at just about anything if we look for it. Personally, that would be a pretty miserable life.

My reason for writing this is so we could all have a good laugh. And maybe to point out that we shouldn’t judge a situation when we don’t know the whole picture. What’s that saying about when we assume? Something about a donkey…

Her response was so funny, I had to share.

Her response was so funny, I had to share.

Cerebral Palsy Awareness: Treatment

My final post on CP Awareness, for now. Enjoy! 🙂

When most people think of treatment, they think of doctors and hospitals and needles and miserable, ongoing physical therapy sessions. That’s not how I remember it.

My earliest memory as far as treatment, I was four or five years old. We were at Shriner’s Hospital, where we spent a lot of time when I was growing up. But it wasn’t what you’d think. Not what you see in the movies. I wasn’t miserable, not at all. It was fun! The nurses were nice and talked to you at your level. There was a rec room and lots of other kids to talk to and play with. And none of those kids thought you were ‘weird’.
This particular time, we were out in the yard of the hospital, and there were clowns and games, and the WSU football team was there. I only remember pieces of it. But I remember it was fun. I remember someone from the local newspaper was there and they took my picture.
Shriners2

I’ve had surgery three different times, totaling 10 incisions. Surgery is performed on children with CP that have severe muscle contracture. They cut the shortest fibers of the muscle, to lengthen it. For me, and many other patients, this meant my heels touching the ground instead of walking on my toes, being able to (almost) straighten my legs, and being able to stand up straight, instead of being bent at the hip. To reduce pain and sensitivity, sometimes causing numbness, they might also cut the nerve.

The first time I had surgery I was two years old. It was to lengthen the Achilles tendons on both legs. I don’t remember it, but I’ve seen pictures of the bulky, plaster casts that went all the way up my legs, as well as the big blue foam bumpers that went around them to keep the casts from knocking together and breaking.

My casts and foam bumpers at two year old. My grandma is holding me :)

My casts and foam bumpers at two year old. My grandma is holding me 🙂

I remember the trips to Shriner’s, about two hours away, to assess treatment. Sometimes it was just me and my mom, sometimes my little brothers came too. I loved the little road trips. I’d ride in the front seat with my pillow and blanket and 20 of my favorite stuffed animals; mom would stock the car with donuts and snacks. When we got there, the doctors would pull my legs up and down and watch me walk and test my reflexes. It was all to evaluate the locations and extent of my impairment, in order to plan treatment options. When they were done, we’d go out to the swing set or to the rec room and play games. Then it was back home.

The second time I had surgery I was five. It was during kindergarten, and I remember returning to school in a wheelchair. Again, it was on both Achilles tendons, and the casts went all the way up my legs. I remember all the kids being fascinated with the wheelchair, and that they could write on the casts. On one occasion, my teacher, Mrs. Herald, who was probably in her 50’s, wanted all the kids to lay on the floor and read. She told me I could sit at my desk, but I wanted to lay on the floor with all the other kids. Instead of brushing me off and telling me I couldn’t, she picked me up out of my wheelchair herself and laid me on my stomach on the floor. The whole class laughed at the sight of her carrying me, but I was glad at the opportunity to do the same thing the other kids were doing.

The last surgery I had, I was ten. They did it during the summer, to minimize the amount of school I would miss for recovery time. This surgery was more extensive; they were lengthening my left Achilles, hamstrings on both legs, and my left hip flexor. In the hospital, I had a roommate that was about my age. Her name was Savannah, and she was having surgery for club foot. I had never heard of that before, and she tried to explain it to me, but I didn’t really understand. It was fun to have another girl my age there to talk to and play games with. Someone who could really relate.

After we went home, having to recover during the summer was hard for me. I loved to swim and ride my scooter and play baseball with my brothers during the summer – none of which I could do with the casts and splints and stiches. I remember getting my feelings hurt when my family decided to go to the local indoor pool to swim, even though I’d have to sit there and read. Didn’t they know how much I loved swimming?? Nights were long; I had to sleep in the splints, which meant keeping them straight all night long. The left leg would hurt under my knee from the stretch of my hamstrings. I used to push the splint down carefully, just enough to bend my knee a little (Shhh! Don’t tell my mom!). But mom stocked me up with books and puzzles and things I could do until I was recovered, and even bought me a little Vtech lap top so I could play games. During my recovery we took a trip to Seattle to visit my grandparents, and we all stayed at a resort. There were lots of things I could do in my wheelchair, like play games in the rec room or mini golf. There was a beautiful pool, and I was really disappointed that I couldn’t swim in it. So my mom waited until it was getting dark and the pool was empty. She got in and told me to sit down at the edge. Then I laid on her hands, and she floated me around on my back in the water. I’ll always remember how cool I thought my mom was for doing that. I’ll also remember the half cantaloupe filled with ice cream she gave me for breakfast the next day (that she didn’t give my brothers).

I started school that year still in casts, splints, and a wheelchair. It was a little difficult, but accommodations were made, and my teacher was really nice. At home, my best friends and I decided to put on a neighborhood talent show. We liked to do dance routines (and the Macarena  ) and put on shows. I didn’t have to have the splints on anymore, and I was able to walk in the cast and practice routines. We picked Saturday the 23rd, the day after I got my cast removed, as a celebration for cast removal. To my surprise, it was a lot harder to walk and jump with the cast off than with the cast on. My ankle was really weak. The support of the cast made it easy, but without the support, I almost fell every time I took a step. But we had spread fliers around the neighborhood and knocked on doors, and there were a lot of adults coming to watch and a lot of kids coming to participate, so we couldn’t change the date now. It was difficult, and probably pretty obvious that I was having trouble, but we did it. And with the $5.00 we got from charging admission, we rented a movie loaded up on candy.

Therapy was another major form of treatment for my CP. I hear people talk about how they hated the painful therapy sessions, but that’s not how I felt about it at all. During school I had therapy once a week. The physical therapist would come and get me out of class (yesss!) for a half hour. The physical therapist I had during elementary school, Bridgette, really impacted my life. She turned the stretching and balance exercises into games, and more importantly, she never let me say “I can’t”. She would prove that I could, if I didn’t give up. Today, when I hear myself saying I can’t, I hear her voice reminding me not to say ‘can’t’. That I can, but I have to keep trying; find another way. She ended up starting her own children’s therapy business. Through that I got to do a lot of things that ‘other’ kids got to do, like dance and Tae Kwan Do. She ended up moving to Seattle, and we lost contact, but if I could see her today, I would thank her.

I also did horseback riding, known as Hippotherapy, and swimming therapy. Hippotherapy benefits because of the effect the horse’s movement has on the person. Swimming therapy’s main benefit is that the buoyancy of the water makes the person almost weightless, so it is easier to move and exercise without putting harsh strain on the bones, joints, and muscles.

Another form of my treatment was leg braces, or AFO’s. I think I was about four years old the first time I got them. I hated them. One of my best friends has Spina Bifida, and she loves her braces. And I know of others that love their braces, but I have always hated them. I remember them feeling uncomfortable and restrictive, and that they always pinched my legs when I sat in the plastic chairs at school. Not to mention how ugly I thought they were. I felt like I looked like I had robot legs. Especially with the giant shoes I had to wear to fit over them. I always tried to get out of wearing them, and sometimes my mom caved and I didn’t have to. The last time I remember having them as a kid I was nine or ten. My poor mom; I probably complained so much that she just didn’t push it anymore.

For children, there are many treatment options, including the ones I talked about above. There is also speech therapy, for children whose CP affects their ability to speak, eat, or swallow. Muscle relaxers are prescribed to patients who have severely contracted muscles. Occupational therapy, similar to physical therapy, is mostly for those that have trouble using their arms and hands. There are also newer treatments, like Botox injections to ease contracture on a longer term, and new discoveries with cord blood and stem cell treatments that are actually making some symptoms disappear! Unfortunately for me, these new discoveries have so far only worked on young children.

I moved to California when I was 13, and there wasn’t any treatment after that. I tried to seek out treatment as an adult when I turned 18, but nobody seemed to know what to do with me. A big issue I have encountered, and a lot of why I write this blog, is that there is not enough information or treatment options for adults with CP. Once you’re 18, Shriners (a children’s hospital) doesn’t help you, and doctors don’t know what to do with you. Research online only finds information on ‘your child with CP’. My problem is this: Children with CP turn into adults with CP. It doesn’t go way on your 18th birthday, but your options for treatment seem to. Why isn’t there more information, knowledge, and options for us?

Soon after my 18th birthday, I went to an orthopedic. He measured the tightness in my legs and said “Yeah, you have contracted muscles.” When I asked him if there was anything we could do about my obviously in-turned knee, a brace or something, he said he didn’t know what I was talking about. Other orthopedics wouldn’t even see me; they said something had to be broken or sprained for them to see me.
With no insurance, I gave up. When my pain and weakness got pretty severe while I was working at the bank, where I had insurance, it was time to try again. My regular doctor helped with some medications and a referral for physical therapy. The therapists were nice and they worked hard to help, but even they didn’t seem to know much about CP. It was my idea to get a wheelchair when nothing seemed to really be working, and the wheelchair helps, but I still wonder if there’s a way I wouldn’t have to use one. If maybe had treatment continued, I’d have had another surgery. If maybe I could make up for it now.

My doctor also referred me to a therapy and CP specialist about 4 hours away (at a children’s therapy center) who agreed to see me, even though they don’t treat adults. She told me I needed AFO’s, so she fitted me for them and had them made. Honestly, I hate them as much as I always did. I thought as an adult I wouldn’t, but I do. They’re still restrictive and uncomfortable, and my feet hurt around the middle of the day. When I wear them, even for long periods, I don’t feel much of a difference. Admittedly, I don’t wear them as often as I should.

Now, on disability, I don’t have any medical insurance. I’m not eligible for Medicare until I’ve been on disability for 24 months. So I pay out of pocket for doctor visits and monthly prescriptions. I hear Medicare doesn’t cover much anyway.

One of my goals, friends, is to change the issue of finding treatment options for adults. My friend with Spina Bifida has encountered the same problem. CP and SB seem to be considered childhood diseases, but they are life long. We want more than just “Here’s a wheelchair and some pills; good luck.”

I would like to see more research being done and more solutions being implemented. Is it silly of us to expect more? To my readers with CP and other disabilities, have you had the same problem, or what treatment solutions have worked for you?

Shriners1

People, Places, and Handicap Spaces

I was talking to my friend Kate the other day, and she was telling me how a few days before, when she pulled into her friend’s apartment complex, someone was parked in the handicap space. The car did not have handicap plates, nor did it have a placard hanging in the window. There were plenty of empty regular parking spaces around, including the one right next to the car, so Kate parked there.

We encounter this sort of thing all the time. Every time I would go to pick up my daughter from school, there were cars parked in the handicap spots that did not have handicap placards or plates. After a few times of watching them leave their other kids in the car to go get the one coming out of school, it was pretty obvious that they didn’t just forget to hang the placard.

Despite the schools population of about 500 kids, the school parking lot is tiny. 20 spaces tops. So all the spaces were taken. Some might find this a valid reason for them to park in the handicap spots. Let me explain why it’s not.

  1. It’s against the law. Plain and simple. Interestingly, when a police car is parked near the school parking lot, non-handicap vehicles do not park in the handicap spaces.
  2. By parking there, they are saving themselves the inconvenience of parking at the curb farther away. Which means a handicap person (such as I) who needs the spot has to park at a curb farther away. It is very difficult for a handicap person to walk that far (especially while carrying a baby). That’s why they have handicap spaces. Sure some, like me, have a wheelchair. Have you ever tried to wheel a wheelchair up hill and over curbs? Not easy.

I ended up going to the school office and asking if they could do something to try to ensure that non-handicap cars didn’t park there. They were very helpful and said they too had noticed the problem and would take care of it. One of the cars that parked there no longer does. Another, however, and decided that parking in the white lines between the spaces is a good alternative. This is also a bad idea, because someone that needed to use a wheelchair or had trouble stepping up the curb, would not be able to get to the sidewalk.

Another thing we see a lot is people that decide it’s okay to park there if you’re just letting someone else run in and you’re going to stay in the car and keep it running. Newsflash: This is still taking up the space. When a handicap person comes along, they still cannot park there because your car is there. And if we’re being honest with ourselves, probably the only reason you would need to stay in and keep the car running is so you can quickly pull out should you see a police officer.

To my readers, please remember not to take up the handicap spaces if you are not handicap, or the lined spaces next to them. Instead, thank God for your ability to walk from that parking space that seems like it’s at the other end of the world, and see it as an opportunity to get some exercise.

There is another side of the problem of handicap parking: The fact that while I’m sitting in a car, I do not ‘appear’ to be handicap. Why is this a problem? Well, to me it’s not. But to the many people who glare at me as I pull into a handicap space, apparently it is. Since I can remember, even as a child, when our family pulls into the handicap space, passers-by slow down to check the plates, check for a placard (which we haven’t had time to hang yet), and smirk. Sometimes they were satisfied when we hung the placard. Other times they would keep staring and glaring until the saw the leg braces or the limping.

I thought this would end once I got handicap license plates. It didn’t. People still smirk and stare and ask if we know we’re parked in a handicap space. It’s usually elderly people in adjacent handicap spots that do this. Many have ‘under their breath’ complained that young people today are selfish and rude and have no respect. Usually I hear them choke on their words as we get out of the car and they watch us walk away. However, after a particularly unpleasant experience in a Walmart parking lot I made this Facebook post:

“Dear elderly people in the Walmart parking lot,

Normally, your staring and smirking and double checking my plates as I pull into the handicap space would provoke me to quickly get out of the car, start walking, and smile at you in that kill-em-with-kindness sort of way. However, today has not been my day, so it looks like it’s not going to be yours either. The fact that I am young and thin and wear makeup has nothing to do with why I’m parking in this space, but way to judge a book by its cover. You have your parking spot, so I really don’t know what you are so concerned about. And to the gentleman who when I was here earlier pointed out that I ‘appear’ to be a good mother despite my obviously crooked legs, thank you, I really needed your affirmation; and you’re right, there is no way to say that without being rude.

Xoxo,

Your friendly handicap shopper”

Ok, so it wasn’t my best day temper wise. Next time I’ll take a deep breath and count to ten.

There was a time when I felt like I was in the wrong. A time when I felt like I needed to quickly jump out of the car and parade myself around because I owed them an explanation. I no longer feel that way. While I know how frustrating it is to have a handicap space taken by someone who doesn’t need it, while I am forced to park at the other end of the parking lot, I also realize that handicap does not have a ‘look’. That handicap spaces are not only for the elderly or obese. That the owner of the vehicle may have simply forgotten to hang the placard. In fact, as many times as I forgot to hang mine, I’m still kind of in shock that I never got a ticket.

So, friends, the lesson here is that the ability to walk across a parking lot is not over-rated; and never judge a book by its cover.

Handicap does not have a ‘look’.

My daughter and I rockin it in the car :)

My daughter and I rockin it in the car 🙂

To Work Or Not To Work

I am currently on Social Security Disability. Almost a year ago, on a doctor’s recommendation and some hope that I would get my life back, I quit my job as a banker, hoping we would make it until I was approved. Going on disability was one of the hardest decisions I’ve ever had to make.
I started babysitting other peoples’ kids when I was 11. I started looking for a job when I was 15. Nobody would hire me until I was 16. I’ve been working ever since. I’d worked in fast food, retail, a gas station, a hotel, and as a bookkeeper. When I landed a job as a banker, I finally felt like I’d found something I wanted to do long term. So when, at 25 years old, I started having trouble just standing at my teller station, I was worried.

I loved my job. I learned something new every day. There was always a puzzle to solve or a fire to put out. I loved that I could answer the phone call of an upset customer, and hear them smiling by the time we said goodbye. My boss was amazing. My coworkers were funny, fun to be around, and fun to work with. Most of our customers came in daily, or at least weekly. We knew them well and they were fun to be around too. The future was exciting. The career possibilities were endless.

As time went on, standing at the teller station wasn’t the only thing I had trouble with. The distance I could walk grew shorter and shorter. Taking a shower seemed overwhelming. Even getting dressed was difficult. My time away from work was hard too. Getting home, it seemed like the only thing I could do was lay on the couch. On the weekends, when we were supposed to be going to the park or to a friend’s house, we would end up staying home instead because I needed to stay in bed with a heating pad.

To make it easier for me to work, my boss gave me her desk next to the teller counter so I could sit and still do my job, while she sat at one across the room. That meant she had to stand at my teller station when we needed extra help. They let me wear tennis shoes, or even flip flops when I couldn’t get shoes on, instead of following the business casual dress code.

When I could no longer handle walking through the grocery store, my doctor and physical therapist told me I needed a wheel chair and leg braces. Even using those I was still in constant pain, but finally I was told they couldn’t do anything else for me. Surgery wouldn’t fix this one. The only thing they could do was prescribe pain killers and muscle relaxers to ease the pain.

My husband, Sal, and my mom kept telling me I needed to go on disability. The thought of being able to relax when I needed to and not having to put myself in pain working every day – plus being able to stay home with my family – sounded great, but there were too many unknowns. I would have to quit my job just to apply. How would we pay the bills on one income? How long would it take to be approved? How much less would it be than my paycheck? What if I wasn’t approved at all?

At the end I was late to work every day because getting ready for work seemed too overwhelming and painful. I had to take breaks between everything. I would cry at work from the pain, and my coworkers would all tell me to go home and rest. A lot of days I would call in because I literally couldn’t get out of bed.

I wasn’t able to spend quality time with my family. Sometimes I couldn’t concentrate well enough to play a board game. And when my little girl was taking care of me while my husband worked nights instead of me taking care of her, I knew it was time to quit. For the first time, I really felt like “Why me?”
I loved my job. To me, quitting my job felt like giving up. Like my handicap won. I’ve never been one to just give up. What would the future look like without my job? I cried for a long time. I prayed for the pain to just go away.

I had big dreams when I was little. Still do. But honestly, the most important dream to me was having a family and giving my kids a great childhood. And I wasn’t doing that. I was giving my little bit of energy to my job, only to come home and lay in the fetal position until I got up in the morning and did it all over again. I realized that I did not want to look back on my life and say that all I did was work at the bank.

It was a scary decision. It meant an uncertain amount of time on only one income. If I was denied I knew I wouldn’t be able to just go get another job. I would have to keep fighting – without a paycheck – until I was approved.

Finally I felt a peace about not working. I started to see the bright side. While it was closing one door, it was opening up a world of others. I would be able to see my husband more than just on the weekends. I would be there when my daughter got home from school, and our time wouldn’t be focused just on dinner, homework, and bedtime. I had just found out I was pregnant. Now I would be able to stay home with the baby. Maybe it would mean I wasn’t in so much pain. I would be able to do all the things I could never find the time for before – music, writing, projects –maybe this wasn’t such a bad thing. Maybe, it’s an opportunity. An opportunity I wouldn’t have if I wasn’t disabled.

So with a recommendation from my doctor, I put in my notice. I was sad to go. I would miss the challenge of my job, and I would miss the people. But in a way it was an exciting new adventure. Who knows what the future could bring?

It took 5 months to get my case approved. Those 5 months were full of paperwork, interviews, doctor appointments, and anxiety. Being on one income, I would get dirty looks when I pulled out my food assistance card. But it was approved, and it was such a relief.

Life is better now. I can rest when I need to rest, and not worry about leaving them short handed at work. I can do much more, and I don’t have to use my wheel chair as much. I haven’t been completely unable to walk since a few weeks after my last day.
As a former member of the workforce, I know what it’s like to see the enormous gap between your gross and net pay, and think of how much you could use that money now. I know how it is to feel like you’ve kind of been cheated out of a chunk of your paycheck.

I can honestly say I worked as hard as I could for as long as I could. I am thankful that we have programs like Social Security Disability, and other assistance programs that helped us stay afloat while we waited for approval.

Remember, while the person in line ahead of you pulling out the food assistance card might be someone who simply chooses to live off of government programs instead of working, the more likely story is that they were or are paying into these programs just like you. That they are doing the best they can. Be thankful that your family is healthy and doing well, and respect the fact that if that ever changes, there are ways to get help, because you, all of us, have helped fund the programs that help people when trouble comes.

Work Pic

Don’t you wish you were normal?

Yes, people actually ask me this question. Which brings about the ever-popular enigma: What is normal?

When I was a kid, my disability didn’t really bother me. I don’t think I really even knew I had one until I started kindergarten and the other kids would ask me why I walked funny. I remember one day coming home from school and trying to watch myself walk in a mirror to figure out what they were talking about. Now, you can judge my family for not having ‘prepared’ me better, but I think the best thing any of them ever did for me was treat me just like any other kid. I think if I had grown up thinking I had all these limitations, I would have been ruled by their imaginary lines. But as far as I was concerned, if Jessica and Michael could do it, I could do it too. And I did.

As an adult looking back, I now understand things that I didn’t as a child. Like why nobody else had trouble sitting on the gym floor during assemblies, while I fidgeted the whole time because it hurt my back and I kept falling over. And why it didn’t bother anyone else to stand on bleachers during choir concerts, but I felt like I could take the whole row of kids down at any moment like a game of human dominos.

Did I get made fun of? You know it. In first grade, Sarah told me I wasn’t allowed to jump rope if I couldn’t ‘do it right’. In fifth grade, Stephanie used to give me dirty looks, whisper to her friends, and laugh. In sixth grade, the three best (female) athletes used to walk past me with an exaggerated limp, look back, and laugh. But you know what? I made way more friends because of my disability than enemies. That’s not to say that we were only friends because of my disability. But it was their curiosity of my disability that brought on conversation, and eventually friendship. For every mean, intolerant kid that made fun of me, there were five that just genuinely wanted to know why I walked funny. So I told them. And they would ask if it hurt. And I would say no. And they’d say “Oh. Wanna go on the swing set with me?”

Even as a teen, it never really bothered me. I felt like “Okay, so I limp a little. What’s the big deal?” I remember people at church would pray for me to be healed. I would go along with it. I believe God could heal me in an instant. I never admitted this to them, because it sounds crazy, but I wasn’t so sure I wanted to be healed. I wanted it for other people, so they would believe in God, but I wasn’t sure I wanted it for myself. I was comfortable with what I knew. I kind of believed there was a reason for it. That some good could come from it.

It never really bothered me – until it affected my children. Fast forward ten years and I am in constant physical pain. Hour by hour; sometimes not so bad, sometimes horrible, blood-curdling, if-I-wasn’t-in-a-room-full-of-people-I-would-scream pain, but it’s always there. There are numerous things I am not able to do because of it. I don’t sleep well because of it. I have trouble holding my baby. I can’t walk for about an hour in the morning, so if I don’t wake up early enough, my daughter’s on her own for getting ready for school. We’ve had to cancel plans to go to the park or to a birthday party. Some of these things don’t seem like such a big deal, but they are to me.

Now let’s look at it from another angle. In January of last year, my uncle was diagnosed with cancer. My uncle is one of the nicest, most caring people I’ve ever known. Not that anyone deserves this kind of thing, but he would have been last on the list.

The type of cancer he has is not a type you get from mistreating your body. It just ‘happens’. The day before he was diagnosed, life was going pretty well. He and my aunt had just bought a beautiful house, and their oldest daughter had just married a great guy. Their middle daughter was having an excellent senior year. 24 hours later, he didn’t know if he would get to meet his first grandchild. My aunt didn’t know if the man she had loved her whole life, her best friend, was going to grow old with her as they’d always imagined. My cousin’s didn’t know how much longer they would have with their daddy.

Now my problem doesn’t seem so bad, does it?

There is more to my uncle’s story, and I know there are countless people in his situation. And countless more in other horrifying situations. I might be stuck on the couch every morning, sometimes all day, but you know something? My husband can bring my son in to me, and my daughter can come in, and we can all sit on the couch and have breakfast together; and I don’t have to wonder if they’ll be here to do it next year.

Ok, wipe your tears, because we’re going to back track a little.

One day when I was 5 or 6, I came home crying because a kid made fun of me at school. My mom told me something I would never forget. Something that changed the way I saw the world. She told me that everyone has something wrong with them. Something ‘abnormal’ about them. Some things are more obvious, like my cerebral palsy, and some things you couldn’t really see, like her asthma. And she was right. Not only was she right, but it made me feel like a person again. Like the other kids weren’t ‘better’ than me. It also gave me empathy. It made me realize that you can’t know what’s going on with a person just by looking at them. That none of us were ‘normal’.

So if none of us are normal… doesn’t that mean we’re all normal?

Me jumping rope with my brother and cousins

Me jumping rope with my brother and cousins

Judge not…

I hate to start my second post on a negative note, but I saw something on Facebook today that really bothered me. Something that one of my friends posted. Something that pretty much sums up why I’m writing this blog.

car

A friend posted this photo on Facebook that he had taken himself. The caption said “Does anyone else see something wrong with this pic, or is it just me?” It took me a minute to understand. Because all I saw was a really cool car parked in a handi — Oh. I teetered back and forth for a minute about whether or not to say something. After all, I wouldn’t want to offend anyone. Or hurt anyone’s feelings. Or embarrass anyone. As I thought these things I realized that I myself was feeling a little offended, hurt; embarrassed. Stay with me – I’m not endorsing an eye for an eye – but I figured he could use a little enlightenment. Otherwise, he and his friends that saw his post might go on forever thinking it was ok to be so close-minded and judgmental. So I posted this comment:

“No offense dude, but I’m handicap and I park in handicap spaces. Doesn’t mean I don’t like cool cars. Also doesn’t mean I couldn’t have a good job to pay for a cool car. Just sayin.”

It kind of infuriates me that anyone would think anything beyond ‘Wow, that is a nice car.’ Seriously, like since I’m handicap I can only drive an Impala? FYI: Having handicap plates does not mean you don’t have a job. It means you’re handicap. The owner of that car could be a successful lawyer or a doctor and have millions. And for those of you assuming that the owner doesn’t have a job and is on Social Security Disability; the amount you are paid monthly from disability is directly related to the amount you paid into it while you were working. So this person could have been a doctor or lawyer, would have paid a bunch into Social Security (automatically deducted as a percentage from your paycheck just like taxes), and then become unable to work. Maybe his grandmother died and he inherited millions. There are a million scenarios in which a handicap person could be the rightful owner of this car, and it’s unfair to think otherwise. I realize it could also be a lazy bum working the system, but why is that the automatic assumption? I know more non-handicap  people working the system than I can count on two hands. You know how many handicap people I know who are working the system? Zero.

I’ll refer to my friend as AJ. AJ hasn’t commented back on what I said, so I don’t know if he changed his mind, but I hope so. Based on the comments from his other friends, I don’t think they read my comment. I did get a couple ‘Likes’ from mutual friends, so hopefully my words are getting somewhere. AJ, if you read this someday, I hope you know my intention is not to make you feel bad. I realize that you are a good guy who had a lapse in judgment. I know a thing or two about lapses in judgment. My intention is only to change the world’s mind on people who have a disability. One mind at a time.