Woman with many questions.

Why I Hope You'll 'Ask Away' If You're Curious About My Disability

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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.

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Adjusting to a Wheelchair as a Teenager

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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.

woman in wheelchair holding two friends' hands

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.

Follow my story on Life as a Cerebral Palsy Student.

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5 Fun Summer Activities for Kids With Cerebral Palsy

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If your child goes to public school, then you know what summer means. While the break is perfect for family fun, it can also mean that therapies received through the school are on hold until late August. For some kids, this can lead to regression.

Cerebral palsy is unique in that it is a non-progressive disorder. That means the abilities your child achieves are theirs to keep, though it may require therapy to keep them active. You don’t have to be a therapist or coach to keep your child active through the summer. Check out these five activities that can keep them moving.

1) Water play.

At home “aquatics therapy” is the best! Even children with severe cerebral palsy can benefit from getting in a pool. For smaller children, you may just supervise them playing in a kiddy pool. If they are moving and smiling, that’s great!

For older children, you can adapt floaties for the big kid pool. A possible adaptation is sewing a loop of fabric around a pool ring long enough that the ring comes to your child’s chest. For children with less trunk control, this is best. Kids with milder cases, affecting one side or their balance, may do well with simply a life vest in the water. In water, gravity is less strong, so they can move more freely. It also relaxes their muscles, which can be hypertensive with CP. Often, kids who utilize wheelchairs can walk while they are in the water. It’s great for their health, and it’s fun!

2) Painting.

The kiddy pool is also a great way to contain fun you wouldn’t normally allow in the house. Painting can benefit both gross and fine motor skills. Help your child change into some play clothes, then break out the washable paint! Finger paint is great for this activity. It washes off easily, but kids don’t have to focus on holding a brush to use it. They can use fingers, toes, fists, whatever they need to do to make a masterpiece! When they’re done, just take a hose to the pool, and your child if he or she enjoys it!

3) Riding bikes.

This one does require some extra equipment. There are bikes and trikes which are already adapted for children with CP, but they can be pricey. If your kid doesn’t already have an “army” bike or one with a high back seat, it’s time to get creative. Baby swings, the blue plastic kind with harnesses, and carseats can be repurposed as a bike seat. Even if your child doesn’t have pedaling down, it can be fun for them to hold the handlebars while you push! Look for pedals with straps, or add straps, to keep your little one’s feet from dragging.
Also, if your child has a gait trainer, turn them loose on the bike track. As long as the other kids are careful, your child may have fun keeping up with them on their own special “bike.”

4) Indoor “play” therapy.

Educational electronic toys can be beneficial. They don’t even have to be age-appropriate, just focus on abilities. Those letter pads can be effective for working on communication, spelling, and hand-eye coordination. Breaking out an iPad is exciting in the summer as well, but you may want to limit screen time. Colored ring stackers, blocks, wooden puzzles, and crayons are great for developing coordination.

5) Read!

Depending on the severity of your child’s CP, they may or may not be able to hold a book, focus their eyes on words, or read aloud. However, kids with limited physical abilities tend to be sponges. They soak in everything around them. Select age-appropriate books for your child that look interesting, or let your child pick a few. This is also a great way to teach your child about your local library. Read aloud to your child daily as part of your evening wind-down routine.

Kids whose parents read do better in school and at work later on. Even if your child is non-verbal, reading to them will expand their vocabulary (the words they recognize), relieve boredom, encourage imagination, and may even help them communicate with the world around them. There have been countless tales of non-verbal children learning to use assistive devices later in life. How do they start out of the blue knowing how to form sentences and use proper grammar? They absorbed it.

The activities you choose will depend on your child’s age, ability, and interests. These five are just a start. Try to pack as many fun, educational field trips as possible into three months. It’s great for everyone’s health and mental well-being to get out of the house and have some fun!

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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To the Friends I’ve Walked Away From

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I miss you.

I wake up in cold sweats in the middle of the night, losing hours of sleep trying to figure out if things could be different, if there is a way to get us back to where we were before. My eyes jolt open and without meaning to, my brain gears go into motion. I know I’m in for hours of not sleeping.

You say “my friend has cerebral palsy.” You mean me, of course. You say it like it’s a point of pride: she has cerebral palsy, but look how much she’s overcome. But what you say isn’t strictly true. I don’t have cerebral palsy. I don’t even suffer from cerebral palsy.

I wrestle with cerebral palsy. It saps my energy in a knock-down, drag-out, hair-pulling, sucker-punching, war that occurs on a daily basis. My time is spent in our society (perhaps wasted?) fighting fights that should never have to be fought in the first place.

My life can best be compared to being Mark Watney in “The Martian.” I am on an inhospitable planet, where nothing is built for me, there is no infrastructure for my basic needs, and I have to live a life that no one else has ever attempted. A basic thing like figuring out where breakfast (and lunch, and dinner) is going to come from is enough stress to keep one busy every hour of the day.

Maybe I’ve shielded you from this. I put on a pretty smile and go about my day. As an actor I am trained to live in the moment, a skill that is even more useful if you have a disability. Focusing on the onslaught of possible problems is enough to drown anyone.

Or it could be that I was very honest with you, opening myself up to share bits of my disability I would rather brush under the rug, choosing to show you the vulnerability behind the smile, admitting I was tired or in pain when the world would keep turning if you didn’t know.

Both, in their own way, are the price of friendship; both are the price of love. I don’t mind paying either.

But somewhere, things got off track. I got put on a pedestal and, for a long while, it worked for us. I was the inspiration, the frail beauty that you came to when you needed to feel good about yourself. I was the one you took care of for a day, creating Facebook memories and gleaning unforgettable stories along the way.

And then I stepped out of line.

It could have been a thousand different ways, but it happened. Maybe I called you out on the sexist way you were treating your girlfriend when you were dismissing her concerns by saying “some girls just babble.”

Or there was the friend who, when I pointed out her flagrant ableism, got so mad she hid behind her friendship with me as “proof” she was a good person.

There was also the friend who took me out to a show, only to ignore me all night when his all too cute 20-year-old student suddenly appeared and started flirting with him (despite the fact he’s already in a relationship). The last words he texted me in a drunken stupor were “It’s not my fault. Stop talking before I lose all respect for you.”

Perhaps you are the friend who played games for years, going months without talking to me and claiming I was the one who “changed” for the worse, only to act like best buddies whenever the timing suited you. When you did it again this spring, I said I wasn’t going to play anymore. Then you became aggressive, demanding “but I thought we were friends. How sad.”

In all of these cases I wasn’t stepping out of line. I admit, occasionally I do just that. I am human (despite being disabled). I do f*** up.

But to the friends with whom I have cut contact, let’s be clear. I quit the relationships because I have too many other battles to fight. I couldn’t fight your expectations and demands as well.

For the five, seven, ten years that I knew you, you may have thought we were friends, but more fundamentally I assumed we were equals.

And this is why I wake up in a panic every night, spending sweat-drenched hours listening to the Goldberg Variations and trying to slow my brain down. Because I want to go back to that time when I assumed you weren’t using me as an ego stroke. I miss the days when didn’t know I was some vibrator to stimulate your rescue complex. If I could get back to that state of ignorance and enjoy your company again, I would.

I wake up because for years I didn’t see what now seems so clear. What I have to fight isn’t just my own body. The people whose hearts and minds stand in my way, aren’t just faceless ignoramuses in some far off place, easy to be dismissed as “backwards people.” They are in my own camp, people whom I thought loved me.

In the still dark hours of the early morning, I flick on the blinding blue screen of my iPhone to listen to Bach yet again. I think about going back to you, knowing that it may very well help me rest better for a while. But in the end I cannot make you see what you do not want to know. There is very little I can do to change you.

Yes, I might lose sleep. But I will not waste time.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? Check out our Submit a Story page for more about our submission guidelines.

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When I Struggle With Patience as a Young Man With a Disability

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I am an impulsive man by nature. My instinct has always driven me to go forward fast and loud with no regrets. Patience is difficult for me, because from the moment I wake up I want to change the world, and make my cerebral palsy into something extraordinary…. Then reality hits. I’m in a state that’s dead broke and ranked 47th out of 50 in terms of disability rights. I wonder “will the world see my disability the way I see it?”

I don’t like to wait, I never have, but in the last couple of years I have learned to be more patient, because my life is more difficult than that of others. It’s a challenge I’m willing to accept.

Envy is a terrible thing. Sometimes I envy able-bodied people, not because they can walk, but because they can do anything they want on their own time, without a schedule. I just want to create my own schedule where I can be free and not have personal care aides putting me to bed every night. Most of the time, though, I accept my weird schedule and have recognized this is the way life works. You have to move forward and accommodate others, if they are going to accommodate you. Sometimes I act like a little kid and try to stay up longer, but most of the time I’m passed out by 11:30 p.m. anyway. So there are no problems to speak of.

Moving out on my own is an obsession, and has been for the last five years.  I wanted to move out immediately after I graduated, completely oblivious to the difficulties that were right in front of me. As time progressed, that envy bug kicked in again, as I watched my siblings move out before me. However, I began to realize there weren’t any options available. There was a place in Naperville, but that’s too far away from my job, and the rest of the housing I qualify for in Illinois is either government subsidized or in Evanston (ewww). I cope with my reality by going to LaGrange or my favorite place in the world, Chicago, where gorgeous girls are everywhere.  And I’m now on a waiting list to move to a wheelchair-accessible apartment in LaGrange in 2017.  When I’m 30, I’ll be acting like I’m 19… bachelor pad!

I also struggle with patience because I have to deal with a ton of ignorance. I wake up thinking every able-bodied person is ignorant of my disability (unless you are a member of my family, my assistant or my therapist). I think it’s my job to teach every able-bodied person I know of the disability struggle, so it can be understood and viewed as beautiful. I think people under estimate me and that makes me stronger and more determined. I will continue to advocate, until I’m old and gray and even then, I’ll have somebody type out my messages for me via a futuristic computer.

My message to you is this: if you’re disabled, start advocating. Use your voice to show your inner strength and your leadership capabilities. However, be aware that finding patience in the mind and heart is a continuous battle. Thank you for allowing me to show you mine.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

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3 Things I Hope My Life With Cerebral Palsy Can Teach People Without Disabilities

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My disability has influenced who I have become in many ways. I’ve found there is much I can teach my able-bodied peers if I choose to be completely open and honest. I want to share words that come straight from my heart; I want to show that I have the same feelings as everybody else. I face some of the same challenges, I just deal with them on a different scale. Here are 3 lessons I hope people without disabilities can learn from my life.

1. I have the ability to provide unconditional love and compassion to others. My love for my friends and family feels deeper than most. I love really hard. I love to hug. I love to smile and laugh. I give people tons of chances; it is very rare that I ever cut someone out of my life. It takes a lot to push me to my limit. I say “I love you” to all my dearest friends. The world needs more of that; it has become a place of terror, selfishness, and coldness. I am glad I have been put in the position to spread so much positivity.

2. I stay physically active with the body I have been given. A disability such as cerebral palsy leads you to find alternative ways to accomplish what is needed on a daily basis. I clean house, I cook meals; I do everything a non-disabled person does, with the exception of driving a car. I will cross that bridge someday though!  My mother has always taught me to make whatever accommodations I felt were necessary. There’s a solution to every problem; you just have to find what works best.

3. I persevere, and I hope to pass that quality on to others. I have faced a lot of trials and tribulations in my lifetime. I’ve gone through feeling unwanted, unsuccessful, and struggle with low self esteem at times, but I have always worked hard to push through all my battles. Find your passions, work to set as many goals as you can, and try to create a life you will look back on and be proud of. At 24, that’s what I’m striving to do daily. I have “off” days occasionally, but an “off” day is OK. Once you realize you can climb out of the self pity-trap, and you learn to take one day at a time, there is no telling what you might achieve.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.
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