For Matthew Medrano – a filmmaker, writer, and actor living in Los Angeles – having cerebral palsy makes sculpting a “beach body” a bit of a challenge. “I do not have a ‘beach body’ in any sense of the word,” the 23-year-old said. “A beach body seems to be someone with a flat stomach. Abs are a plus, and… here in LA, it almost seems to be a requirement.”
“For me, the arrival of summer always meant health food, exercise, and days lounging out by the pool,” Medrano said. “While I don’t absolutely dread any of it, summer always seems to just make me aware that I’m different.” For example, Medrano can’t wear flip-flops. Every time he tries wearing them, it feels like his toes are breaking.
“Society has shown us to have a beach body, you practically have to spend all your time at the gym, eat nothing but kale, and cut any and all junk food and alcohol,” he explained.
Going to the gym can be particularly challenging for someone with CP.
“When friends rave about the newest exercise craze that helped them achieve their beach body, just watching it makes me want to check into an ER,” Medrano said. “To borrow from Emma Stone in ‘Crazy, Stupid Love,’ it looks like they’re photoshopped. And I’m green with envy.”
If my marriage was a cake, you would be the brightly colored, impossible to miss sprinkles covering the outer edge. You’re there, boldly covering the surface area of what me and my husband and family are.
At first, I didn’t think much of you. You were part of my childhood, there adorning the cakes of two of my closest friends. You weren’t this strange, foreign thing like blowfish or something that I had no experience with. Besides, this is a cake metaphor, and blowfish on a cake would be weird. I knew you. You were there, but you weren’t on my cake.
As I saw the impact you had on my husband, I started resenting you. Seriously, sometimes sprinkles are just too much on a cake anyway. There were surgeries, physical therapy, more surgeries, wheelchairs, and… wait… more surgeries. And with every little thing, every sleepless night my husband endured, there you were. And believe me, you’re the first thing anybody sees when they look at us. People don’t see our love, our humor, or even his ability. They see his wheels. They see you.
Now, nearly seven years later, I have come to love you. Not just the “I guess I’ll deal with you” love, but a love filled with gratitude. As I grew, and saw my husband and now son grow, I see you for what you are.
Christine’s son pushes his father’s wheelchair.
You see, without you, cerebral palsy, my family wouldn’t be what it is today. We wouldn’t be the same people. Through the struggles, discrimination, pain, and frustration, my husband is more resilient and determined than anyone I’ve ever met. His faith is unbreakable and unwavering. He is getting his master’s degree, chasing his dreams. He is such a patient father, always encouraging but never forceful. He understands himself, and his limitations, which gives him a much better understanding of those around him. He shows our son what perseverance and true strength are every day. He is the most loving, gentle, supportive husband.
Because of you.
Because of you, cerebral palsy, my son has grown tremendously in his faith, and has a true servant’s heart. He learned to walk pushing his daddy’s wheelchair. He holds doors, he waits patiently, he helps at every opportunity. He has no concept of disability. At 5 years old, he understands that all people do things differently, in their own way, and everyone does better working together. He believes from firsthand experience that God works all things for good.
Because of you, cerebral palsy, we believe without a doubt that God holds us all. We know that tomorrow isn’t promised, but to cherish each day as it comes. Every single moment is precious. Love is hard, and everything that’s worth having is worth the work it takes to keep.
Because of you.
Every single moment, eyes are on us. He can’t go to a job interview without you. You are a hidden blessing, cerebral palsy, because you help us see who is interested in the whole cake, not just making a judgement based on the decorating job. Anyone can make a cake look good, but it’s got nothing to do with how good the cake is. You force people to look beyond the exterior.
So thank you. Thank you for being part of our life. I know that we will always have the strength to fight and love more than we ever could without you. You’ve given us dreams, passion, drive, and with that, we can stand firm and show the world ability, and help them to ignore that silly little prefix that so many can’t look past.
Do you have one word you wish people would stop using to describe your life? Is there a word or a phrase that really gets under your skin? For me that word is “normal.”
Every single person in this world is different and unique in their own way. That is what makes the human race special; everyone is an individual with their own preferences and their own tastes. This by extension means that everyone sees the world in a unique way. Everyone has their own view of what “normal” looks like.
For me, normal is waking up, putting on my braces and trying to figure out how to adapt to the world around me. I am what some people would call unconventional. I do not walk like other people; I don’t have the flexibility or coordination that other people have. Sometimes the way I have to do things shocks other people, and they often ask, “how come you don’t do this the normal way?” What people don’t realize is that the way I do things is the way I have to do things. It is my “normal.”
Next time a person uses the word “normal,” I hope they stop and think about what they are truly saying. If someone does something differently than someone else, that is OK. Quite frankly, I think the word “normal” takes away from a person’s individualism.
A wise man once told me that “normal is a setting on a clothes dryer.” Every person is different, and we all need to embrace our individuality, not hide from it!
Many people in my life question my relationship with my boyfriend Bill. Why did I decide to stick with him when life together has so many WTF moments? Why don’t I chose to leave the world of disability behind and join Tinder or something in search of a soulmate closer to my abilities?
It’s simple really. It’s a matter of acceptance, and taking that extra minute or two to reflect on a situation. I’ve always seen the good in people, and judged a person beyond their disability. It’s not that hard, actually. Here are 5 ways to love someone with cerebral palsy — or any disability.
1. Patience is a virtue. Simple tasks we take for granted like dressing can seem like a Herculean task. Life can’t always be go, go, go, and that is perfectly OK. Sometimes those can be the moments where great lessons are learned and the simple joys in life can be celebrated.
2. Take time to listen. Bill likes to tell stories that resemble the wild tall tales my Grampy tells, only with Power Rangers in place of the Bigfoot Gramps shot in Canada. Some might dismiss them as childish stories, but I hear more than imagination gone wild. Sometimes he shares an old memory or a great moment that reflects in the real world, along with great lessons in acceptance and self-advocacy. Listen up: he has a lot to say.
3. Accept the good, the bad, and the ugly side of disability. The world as a disabled person is far from the sunshine and lollipops some stories that float around the internet portray. For every “Autistic Waterboy Becomes Varsity Football Star” there is someone who has lost his ability to walk on crutches as well as the simple ability to get out of bed without help. For every great place to go on a date, a majority don’t have ample wheelchair accessibility, resulting in a stretched-out adventure and potential injury.
Disability can appear to be an ugly thing, but only those with eyes wide open can see the beauty in it all. We can take difficult moments and somehow make them good, whether it be a special bonding moment, like the time we got lost in the back parts of the mall in search of an elevator to the movie theater and found ourselves on the roof instead. Or times when lessons in love and acceptance are learned, like a little boy asking questions about his wheelchair in the Lego Store. There is always a good side to even the most uncomfortable moments.
4. Take time to find the beauty in someone’s body, however “broken” the world may see it. Contrary to popular belief, that metallic thing with wheels isn’t part of his anatomy; there really is a person in there. A person who has enough upper arm strength to put the Hulk to shame, or at least enough to pick me up, even though I’m a fairly fluffy person. His spine may curve, his legs are thin, and his features may not be ideal in this world where beauty is defined by the Kardashians and Johnny Depp, but he is a great-looking man who takes pride in himself anyway. That’s true beauty enough. To see yourself in the mirror each day and smile back is a task many don’t do each day, but he does. And that attitude is what makes me love him more and more each day.
5. Love with no regrets. Don’t worry about the small trivial stuff people will throw at you. Love is about celebrating one another, no matter what the world says. He may not be that CEO Momma always wanted you to have, nor will be be able to physically sweep you off your feet. But he sure will take your breath away with his generosity, love, and ultimate respect for you. A body and a brain doesn’t make a person who they are. It’s their soul, spirit, and strength that conquers all who challenge it. It’s the way they inspire others to love and embrace themselves. It’s that smile that can break the walls of doubt down and open minds. It’s taking a chance when others wouldn’t. It’s loving each other for who we are, no strings attached.
Love doesn’t discriminate. And neither should you. Embrace one another, you never know where the journey will take you. Have an open heart as well as an open mind. Find the beauty within, for every person is a treasure waiting to be discovered.
According to eDiplomat, a website for the international diplomatic community, under the subheading “helpful hints” for United States cultural etiquette, “It is considered rude to stare, ask questions or otherwise bring attention to someone’s disability.”
As a person with cerebral palsy, that struck me as not only untrue, but a possible first step in how most people’s attitudes are formed towards those with disabilities. I’m sure some might be surprised to hear that; after all, it’s how most of us have been taught, myself included. After some reflection, I couldn’t
help but realize how inaccurate and damaging that cultural norm can be. However, I haven’t always held this opinion.
Growing up with CP, having worn leg braces up until my mid-teens, and using a walker, I would often overhear parents telling their children not to stare, which is appreciated, but also not to ask any questions. Human nature being what it is, children will always be curious, ask general questions, stare, and sometimes even gleefully ask “where’d you get that?” When I was younger, I found these questions
uncomfortable, because we all want to fit in. Unfortunately for me, between my large silver walker, and my dashing looks, “fitting in” wasn’t always in the cards.
One of the frequent questions I got and still get asked by children in particular is: “What’s wrong?” Although their question is meant in a matter-of-fact way, that acknowledgment of my difference would make me uncomfortable. But in hindsight, it wasn’t the question or answering that made me uncomfortable, it was the reaction of their parents, which would range from a low “don’t say that” to more animated, moving the child away without actually addressing me. In a way, I used to appreciate that “silencing,” because it saved me from an awkward explanation. As I have gotten older, I’ve come to realize that I would much rather have someone ask a direct question than avoid my disability and me with it. The explanation is far less awkward than avoidance.
All that said, my opinion is my own, and some might not agree because disability, like any medical condition, is personal, and some may consider it private. In my case, however, I would much rather have someone ask, and engage with me. I guess it would be a more personal icebreaker than some people are used to, but I have found that once the initial curiosity is satisfied and there is an understanding, it generally opens the door to a more inclusive and comfortable attitude.
In my experience, avoiding the unknown has a broader chilling effect towards not just those with a disability, but anyone who is “different.” At first, it may well be awkward, but I think the fewer walls there are around us, the more inclusive of a society we become. I believe acceptance (or tolerance at the minimum) begins with some sort of understanding of each others’ differences.
So please, ask away. We could all stand to learn something from each other.
I have cerebral palsy, but it wasn’t until the age of 15 that I used a wheelchair part-time. Before this point I had seen it as giving up. I probably should have used one quite a few years before I did to prevent higher pain levels and fatigue.
As I approached my teenage years my health/mobility began to deteriorate, and I was experiencing pain, which was just getting worse and worse. Previously my CP was not too noticeable and I no longer had to wear AFO splints.
As a teenager you normally gain more freedom, become independent and find yourself. Yet I found myself having to rely on others more, at times feeling stuck in a chair, as well as having to adapt to changing health which led me into the unknown.
Part of adjusting has actually been learning how to use a wheelchair. I was such a bad driver! The first time I used my wheelchair at school was the first time I had pushed myself, and I was hoping it would go unnoticed but was prepared for questions from fellow students.
In one particular room it was quite tight in terms of how big my chair was at the time and I reversed straight into a table, moving it out of the way. This movement did create a few laughs, and I laughed with them, but deep down I was so annoyed and had no idea how I was ever going to get used to this. Being a clumsy person to begin with, I didn’t have coordination on my side. The chair had been delivered and left for my use. It came with a massive manual, but this didn’t help with the logistics (because it is much harder than you realize!). Over the last few years I have become more skilled at using it, but this has been through practice and a lot of trial and error. Try being on a slope, opening a door and having to get over the raise at the bottom of the door!
Learning that the use of a chair is not giving up has taken me a lot of time. Surely if I could just last another hour without the use of my chair that would be good? If I could manage to walk this far last week then why couldn’t I do it today? You must need to be in more pain to “qualify” the use of a wheelchair. This inner battle with myself went on for a long time, and can even happen now. I felt the need to justify my decisions to others, when in reality it was myself who needed convincing.
My family and friends were supportive of me using my chair. In fact, at times they urged me to do so. A change in health meant accepting things I had previously taken for granted were becoming harder to achieve. I wanted to be off shopping with friends, out for meals or going on lovely long summer walks, yet it was becoming harder to keep up. I tried and tried to be involved, only to have the backlash of more pain and days in recovery. Over time I have found it is possible to do all of those things in my chair and that pacing yourself is vital if you want to get to the end of the week awake.
Something else I found difficult was a loss of identity. It felt like I no longer was referred to as “Chloe.” I was “the girl who uses a wheelchair,” but what if I didn’t want to be that? Even worse, it was assumed I knew every other person who used a chair — which also was not true. I was coming to terms with my health and seemed to momentarily lose myself amongst it all. I felt like I’d just figured who I was, only to have it pulled out from under me. I felt left starting from scratch. For a while, I refused to have pictures taken if I was in my chair. I guess that was visual proof I hadn’t quite accepted yet.
I wanted to be seen as more than someone who used a chair, and certainly was not going to sit back and let that become my identity, nor an excuse to not accomplish something. On the other hand, using a chair has actually made me want to build a stronger identity, just to counteract what I saw as a barrier. I have set out to make people see Chloe, who happens to be sitting down.
Adjusting to a wheelchair as a teenager is certainly not an easy task, but you will get there; it does become easier. By overcoming this hurdle it has enabled me to keep going and live the life I want to. Chair or not, I am still me; that is the most important thing I have learned over the past few years.