On Saturday afternoon, I was invited to participate as a guest on Special Chronicles, a podcast by my mom’s friend Dan Smrokowski. The aim of Special Chronicles is to “give respect and a voice to those with special needs.” When I was asked to join him, I was more than overjoyed. I’d like to start my own blog some day, but until then I’ll be writing guest posts here about my personal experiences with a disability. Like I told Dan the other day in the interview, having cerebral palsy means people underestimate me, and I need to constantly prove to people there is more to me than meets the eye.
Through second and sixth grade, I wore colorful socks and decorated my braces with bright colors and patterns. Now I am in middle school and people are a little less welcoming to things like that. I don’t just want to be known as “the girl who’s shy and walks weird.” I want to be “that girl who’s really fun to hang out with.” I try to participate in as many sports as my body can take, and people will notice me for simple things like running races. But noticing me isn’t enough.
I need them to see that I am more capable and independent than they realize. The sooner they realize this, the more my disability fades away.
Because people tended to jump to conclusions about me, my abilities, and how other people’s actions (like staring!) affected me, as I got older, I put up walls against people and was afraid to make friends. My mom noticed this, so now I’ve tried opening up to people and showing them how I’m not an armored, unfriendly turtle, but an awkward, bubbly, sensitive teenager. My friends know this about me, and if I fall, I’ll be laughing right alongside them, and we have some inside jokes about our “favorite fall.” I don’t like people to pity me – if there’s one thing I hate, it’s pity. My life is not miserable, and I can adapt in difficult situations. But once again, people assume I am a broken toy that needs fixing, and they don’t realize that if I need help, I will ask for it (and they don’t need to force “help” on me).
Typical people – especially kids and teens – often don’t understand what it’s like to always have to claw your way out of difficult situations and stand up for what’s fair.
Several people in my life have taken advantage of my disability because it made them look good or so they could bend the rules at school. I won’t name any names, but my peers, selfish “friends”, and even adults have been among them. I am not “shy” and “pitiful”, and if I need to speak my mind, I will. And if I have to scream and fight to be heard, so be it. A lot of people my age are afraid to argue against bullies and what they know is wrong, because of their fear of threats and consequences.
That’s one thing cerebral palsy does for you – it’s definitely a pain in the rear end, but it toughens you, and destroys any fear you have of the future.
As well as helping me be more relaxed and self confident, my cerebral palsy gives me an outsider’s perspective on how pointless it is to be a “cookie cutter teen.” What I mean by that is how so many of my peers try to be just look everyone else so they will fit in. Instead of aiming for conformity, I want to be a tulip in a field of roses. Besides, if everyone was the same perfect gingerbread girl or boy afraid of speaking their mind, how would people like President Abraham Lincoln and Martin Luther King Jr. have made the world a better place?
Terrific introduction great to hear your voice in your writing.
Outstanding piece. Totally open and vulnerable piece, but at the same time so strong, honest, and eye opening. You are a terrific writer with a voice we need to hear more.
Thank you. I’m taking Creative Writing this year in virtual school, so I think it definitely made me better at writing, more confident in myself, or maybe both. Thank you so much for the positive feedback, and I hope to write more soon!
Yes, Sarah Kate:
So happy your Virtual School offers Creative Writing.
As Kim Amy and Beth have said: voice is powerful and important and yes, it is an important writing skill.
I’ve noticed and experienced: writing skills and knowledge do have that chain reaction.
Being more confident in yourself makes you a better writer [more open to opportunities to share and spread] and being better at writing makes you more confident.
I too hope you write more whenever you want to and whenever there’s a need.
Thank you so much! I was so excited when I realized they offered Creative Writing, and this is the first actual piece I’ve shared with the wide world since I started!
Gives me perspective into what your journey must feel like. Great writing.
Sarah Kate,
I want to share a few more thoughts on your writing. The description of clawing and scraping your way hit home with me.
As I often joke about, I am very ADD. But, my school experience was no laughing matter. I was told I would not make it by many. I was not admired for my hard efforts, but misunderstood.
What I find so encouraging is your bright positive outlook. The work it takes to stay positive when you feel that you are scraping your way is not an easy feat.
And,, for that any many other reasons, I am glad you are my daughter’s good friend.
Oh, and about me, yes, the scraping paid off. I do have a long track record of struggling grades, but my parents never stopped believing in me and encouraging me. I eventually became a 4.00 student. I pursued and completed both undergraduate and graduate school. I look forward to returning to my field when Hannah graduates. I will miss all of you too much to stay home and be bored.
Sarah Kate,
what a great thing to do with your Saturday afternoon.
The coloured socks and braces served their purpose.
What is the next step after noticing someone? You never know what that will be.
Thanks for screaming and fighting – your respect and voice comes through.
That “destroys any fear you have of the future” can make you proactive and constructive in shaping it and makes everything important.
Why would you want to spend your teens in a cookie cutter mould?
Exactly! It feels nice to finally express the things not many understand.
It really really does, Sarah Kate!
One thing I wanted to understand better was how kids and teens “fight for fair”. [to quote a legal firm I know very well – Slater and Gordon which is in Australia and the UK – but probably not in the US].
And how those kids and teens could change the rules they find unfair for everybody.
Another thing I am wondering: did you and Andi and Daniel meet through Sarah Perkins, who co-runs the Special Chronicles? [a great one if you’re into sport and community].
The way your Mum noticed the walls is one form of noticing which is really helpful and kind.
And what a friend would do for another friend.
I also liked the way you and your friends would joke about your falls. “I stand alone but I don’t fall alone”.
That’s one thing that’s always hard if you have a disability, you have to try first to get what you need with peaceful talks, but then if they refuse to listen, then screaming is the only option left until they make you seem equal.
Sarah Kate – I really appreciate hearing your point of view! Thank you for sharing!
I’m glad you liked it! It was my pleasure!
“Tulip in a field of roses” may be the best line ever. <3 you, SK!
Thank so much and love you, too!
Sarah Kate
I loved reading about your life through your eyes. There is nothing wrong with being the tulip amongst the roses! Your real friends realize who you are and what you are. A few good friends are the ones who always are there for you. Acquaintances are good too, because later in life they can become friends,, they just take longer to become friends.
I look forward to reading more about your life as you see it!
I’m glad I can use the internet to express myself, because others who don’t understand don’t like to listen.
Sarah Kate:
I was thinking about “life before the Internet”
and how easy it was to be alone among those who didn’t understand whatever it was.
There were a lot of things which could be hidden.
The Internet is useful listening practice.
When we listen we put ourselves into a vulnerable position. Being vulnerable on that point, right here, right now – and getting a whole picture.
Also listening might have the effect of a threat or a consequence.
People who don’t like to listen – may like to do something more active – like change.
I agree, and that’s why I like to share these kind of things with people. So they can see how difficult and desperate the situation is sometimes.
Oh Sarah Kate, I got emotional reading that. ;I’m a few years older than you, I’m almost 19 and I have hearing loss. I relate to what you said so much. Just know that you will find those friends who totally and completely accept you and part of you is your disability. You will run into challenging situations regarding your disability as you continue to grow up but as long as you remain confident in yourself and surround yourself with a supportive family and friends, you will go so far in life!
Thank you so much, Kathryn, for your encouragement and insight!
Beautiful writing, SK. So honest and real and the world needs to hear more from you.
Looking forward to reading more!
Love,
Jillian’s mom
Thank you so much! It feels so good to just let my emotions pour out; it lifts a pretty big weight off my shoulders. I’m sure I will be writing more, and tell Jillian I said hi!
Sarah Kate,
Thank you for sharing your perspective. I especially love that you can find the humor in what might be an awkward situation. My son has cp, too, but he is non-verbal. I rely on people like you to share your experience so I can get some insight into something I have never personally experienced.
I would love to hear more about your experience as a sibling of your brother with special needs. I feel like my daughter, as a sibling of special needs, also learned early on that being different was more than OK. She is definitely not a cookie cutter teen, either!
Keep sharing your story , , ,
Well, if I can’t fix a problem, why let it push you around? I’m glad I could help, and I hope my mom will let me share more soon.
Hey Sarah Kate!! I loved this post. As a 23-year-old blogger w/ spastic diplegia, so much of it resonated with me! I love that you’ve found friends who accept you for who you are, CP and all. I found those friends in middle school, too, and we are still really close more than 10 years later. (And I used to talk about my “favorite falls” too! I am magnificent at falling.) Sometimes I’d just lose my balance suddenly, and my friends and I would joke that I was just “making sure the floor was clean.” 😉 I don’t know about you, but CP was never a huge topic of conversation for us, and it still isn’t — it’s just one part of what makes me who I am. Throughout college (when I started blogging), I found myself wanting to talk about it more, but it’s still a tricky thing for me to bring up in-person.
You’ve got such a way with words! I hope you continue to share your story, because the world needs more voices like yours….voices that will fight and scream and speak up for what’s right. You go girl!
My friends say my falling is my “superpower” and that when I fall, the earth is trying to hug me. We do talk about it from time to time, but not very often. Thank you for the support! What is your blog called?
Hahaha — ohh, I love their take on it!! Judging from your post, writing might be another one of your superpowers! 😉 My blog is transcendingcp.blogspot.com 🙂 And if you ever want to get in touch for any reason, feel free to send me an email — transcendingcp@gmail.com.
Aww, thank you. I’ll be sure to look at it, and I’ll definitely shoot you an email when I wanna talk! 🙂 I’m on my computer, and I don’t have the emoji option.
Loved the article Sarah Kate! I really think it is a great message to all teens! I love that you are so comfortable in your own skin. Thanks for being an inspiration to all of us ( and not because of your different ability but for your brilliant insight and strength).
Thank you fro the positive feedback and thank you for listening to what I have to say and supporting me through therapy and encouragement!
Hi Sarah Kate. I am an adult with sdcp (same as you). I can’t tell you how hard it is to always have to prove yourself. My school experience was not as positive as yours but I can certainly understand the struggle. I read Sarah Perkins blog. The other day she talked about how angry she would get when others don’t understand. I have found myself in that very situation also and it’s very frustrating and hurtful especially when it’s someone who has known you for years.
So I have decided that after reading that post that it’s not worth getting upset over and that they will never understand the struggle.
You have written a very good post young lady well done. It gave us all something to think about.
(Btw I am using my mons email)
Aww… I’m sorry to hear that. I’m glad it made a difference for people and maybe shed a little light on the hardships of living with a disability.
How I go about this disability thing: I couldn’t care less what others want me to prove. Those who are worth my time will find it for themselves.
I’m trying to work on that. It’s hard for me to just deal with it, because SO many people underestimate me, and I wanna make them see my full potential.
There will always be idiots who want to want you to keep “proving yourself” to them saying that you’ll “achieve your full potential” under their instruction, but you’ll really just be another one of their puppets. Prove yourself to yourself until you can’t stand to not prove yourself to someone whose opinion really matters in the long run.
Sarah Kate,
Know about being underestimated all my life. And dealing with every SDCP issue and people’s perceptions. But had to work extra hard at all things, and not be afraid to speak my mind. And speak up! And be firm when necessary. You post eloquently on everything you and I ever had to overcome and work around., Glad to hear your perspectives.