Just another day, just another picture in my newsfeed. I sigh and avoid hitting the “share” button, as usual. I’m tempted to keep scrolling, but there’s something stopping me.

I am differently abled.

Those words don’t sit quite well with me, so I’ve decided to write these words instead.

Don’t get me wrong, I respect your right to identify yourself as you please. Use whatever works, whatever gets you through the day. I just don’t see myself as differently abled. I see myself as disabled, and that’s OK. Here’s why.

meme that has exes next to the words "challenged, handicapped, handi-capable, differently ablbed, diverse-abled, special needs" and a checkmark next to "disabled"

I am not a superhero.

I think all this focus on ability can warp expectations. Perfectly able people can be perfectly average, but we’re not usually extended the same courtesy. Society has told us that below-average physical prowess should be accompanied by above-average intellectual genius. We’re raised to overcompensate. We’re told to shine a light on our strengths in the hope of leaving the weaknesses unseen. I tried, but all throughout my childhood my disability was ever-present, alongside mounting pressure and increasing anxiety. Why? Because I was human.

I am still focusing on my abilities.

It’s my disability that makes me different, not my abilities. My abilities match up with those of my peers. As for things that I do well, I don’t do them well for somebody with a disability. I do them well by any standard. I think you can defeat the purpose of focusing on ability by bringing disability into the equation again. I acquired my strengths the same way as everyone else, and I’m proud of that. The only thing different about my abilities is that they’re more pronounced. And they’re more obvious not because I have a disability, but because I have a talent.

I don’t want you to worry.

I hate to think of my friends wondering what to say. I don’t like the idea of people thinking they’re going to upset me by being honest. I am disabled, I live with a disability, I have a disability. That is all true. Do you want to know what else is true? My best friend isn’t the guy who calls me differently abled. He’s the guy who calls cerebral palsy “cereal pansy” and encourages me to mow down pedestrians on my mobility scooter.

I am not giving up.

A huge part of this journey involves acknowledgment. I’ve figured out that hiding your flaws does not make you flawless. Asking for help does not make you helpless. Realizing you can’t get up stairs doesn’t mean you need to sit on the bottom step feeling sorry for yourself. It means you need to find an elevator.

I have bigger fish to fry.

During my lifetime, I’ve heard almost every name under the sun, so I’ve managed to develop a fairly thick skin. As such, being called disabled is downright pleasant. As someone with quite a high IQ, it’s certainly more desirable than being called “retarded” by some stranger in the street. As someone who underwent major spinal surgery to eliminate the tightness in my legs, it’s certainly better than being called “spastic” by some guy who doesn’t know my medical history.

I see myself as I am, nothing more, nothing less.

The Mighty is asking the following: What’s an opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Recently, I was told that I almost wasn’t granted the gift of life. I knew that. It’s something I’ve been told numerous times: the whole story, from start to finish. Things were bad for me in the beginning, but that’s the thing, they were bad. Now, 18 years and some months later, I’m alive and well and incredibly happy. According to some, I’m “disabled” because I have cerebral palsy (CP). To those people, I will say this: I’m not disabled. Something can only be seen as a disability if you allow it to be, and I don’t see my CP as anything like that. After all, the only disability in life is a bad attitude, right?

Madison
Madison.

To my loved ones: I need you to know that I’m perfectly happy the way I am. I wouldn’t change a thing. Please stop asking if I would go back and change things so that I wouldn’t have cerebral palsy. I wouldn’t. Because of my CP, my life is the way it is now, and I love every bit of it.

I need you to know that I will stop at nothing to be able to do things myself. I struggle sometimes, of course, but I will find a way to get things done. I appreciate the fact that you are so quick to offer a helping hand, but I don’t always need it. I got this. If I don’t at the moment, I’ll find a way. Trust me.

If I ever do ask for a helping hand, please understand that it took a lot of courage to ask you, and I hate that I had to resort to it.

That being said, I need you to know that you come first for me. One time, I got coffee for a friend before one of my classes. I only got him one, because I struggled to carry both and decided to avoid the embarrassment of spilling coffee on myself. When I walked in and handed him the drink, he said, “Where’s yours?”

“I couldn’t carry both,” I explained. I didn’t think a thing of it, not being able to carry both drinks. It made me happy to be able to treat him, and I didn’t care that I didn’t get coffee. Not in the slightest. To my loved ones: My CP does not take precedence over you. It never will.

I need my friends to know that, when I tell you The Whole Story — the stroke, the hospital visits, the dreaded Leg Brace Incident — if I ever do, it’s because I trust you. When I finish my story, please don’t give me The Look of Sympathy that I know so well. Please don’t say “I’m so sorry.” I don’t feel sorry for myself, and you shouldn’t feel sorry for me, either.

I need you to know that my cerebral palsy does not define me. I am a writer. I am your girlfriend. I am your friend. Your sister. Your daughter. I am not my CP, but I am so much more than that. I am not my CP, but it has absolutely shaped the strong, determined person that all of you know. I’m grateful for it.

I have cerebral palsy, but I am not “disabled.”

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


If you don’t know who Zach Anner is, you need to. If you do, it’s probably not a surprise he’s up to something else awesome.

Anner is famous for his YouTube series “Riding Shotgun,” “Workout Wednesday” and “Top of The Monday” (with Soul Pancake). He recently did a Reddit “Ask Me Anything” (AMA) to support his new memoir “If At Birth You Don’t Succeed,” which dropped this week.

Anner had a few grew responses to questions from fans, but one related to his cerebral palsy stuck out to us.

User jeddalyn set up this scene:

I need a little advice. Friends of mine have an 11 year old son with CP and he usually uses a wheelchair when we’re out. I spend a lot of time with him and we often go for adventures around town.

One thing that makes me frustrated is when people come up to us and say to me, “What’s wrong with him?” or some variation on that. This happens quite often and I’m never sure how to handle it.

First, I’m angry that they’re talking to me like he’s not even there, and can’t hear what we’re saying. I mean, he’s 11 for god’s sake. Second, the whole phrase “what’s wrong with him?” makes me angry. And third, why do they think they have the right to ask personal information like that?

The worst is when people try to give us advice. Especially about faith healing or herbal medicine or new-age treatments.

I wish I had some witty reply, but I usually just feel really annoyed and, I think, maybe protective. I try to brush them off and ignore them, saying something like, “There’s nothing wrong with him, he’s fine.” Some persistent people will not get the hint and say something like, “No, why is he in a wheelchair?”

What can I do or say here? We are in Canada, so legally I have to be polite about it or Justin Trudeau harms a baby panda or something.

I don’t think these people realize that they’re being rude. Sometimes these questions come from other people in wheelchairs as well. I know they’re just being curious, but I can tell that it makes my young friend awkward, and I’m not really helping because I don’t know how to handle it.

This was Anner’s response:

Great question. I experience this all the time. I think the best advice I can give is to empower your friend’s son to brush off comments like that, or if they come from a genuine place to answer them honestly, and refocus the conversation on who your friend’s son is, and not what his condition is. People will always be curious and ignorant, and unfortunately the only cure for that is sharing knowledge.

It’s not easy when you’re 11 to be constantly told that you’re different, or there’s something wrong with you. But every social exchange that I have like that, I take it upon myself to rise above it, and reclaim my personhood. If he’s really struggling, just tell him, in a few years he’ll be able to laugh it off, and that people can be stupid sometimes.

But I do my best to never antagonize anyone if I don’t have to.

We can’t wait to read his book.

And here’s an example of Anner’s videos, just because:


A year ago this week, we were waiting on MRI results for our 14-month-old son. In the throes of spring break, our days had grown busier and longer than the typical weekdays that were ruled by the routines of homework, bath, and bedtime. I had all but forgotten about the MRI when my phone began to ring, a caller that in a glance I recognized as Texas Children’s Hospital. I can remember so many of the small, acute details about that day, because for a brief moment of it, time stood still. Even now my mind returns to that ratty t-shirt I was wearing with the stain on the shoulder and the Spongebob theme song on the TV. It was the soundtrack to which I found out my son had a brain malformation.

On that day a year ago, I feared most that Avery would not progress. That he might not go on to do the things his father and I dreamed of from the moment we knew he was coming. If I am being completely transparent, I even feared he would never be perceived as “normal.” I, in all my rationality and acceptance, was worried about “normal.”

When I was told that my child’s brain formed abnormally in the womb, it was crushing. In our case, a routine MRI to check on a brain bleed he had suffered during his premature birth led to the unexpected diagnosis. Somehow missed during his 16 weeks in the NICU, Avery was born with excessive folds in the perisylvian region on the right side of his brain. I had never heard the term polymicrogyria before that afternoon when time stood still. Even now, medical professionals will often turn their heads to the side and request, “Can you spell that?” when I rattle it off in his list of diagnoses. In the beginning, the fear was worse because the term itself was so foreign to me. How can you be brave in the face of something you know nothing about?

Arick, Avery’s father, and I did not talk much that afternoon. There was no small talk, no conversation about our days. The gravity of Avery’s diagnosis hung between us like a wall. We sat in relative silence together, making the calls to loved ones to let them know the news. We knew enough to explain polymicrogyria but beyond that, we knew nothing. So we Googled. And we cried. As we turned out the lights, I promised Arick I would stop Googling. Our fear that night was palpable. Sometimes, it still is.

Avery
Avery recently while hospitalized for RSV.

It is only with the clarity of time, of a year fast-forwarded, that I can recognize how wrong I was. In my moment of weakness, I let myself doubt my son. My son who fought for his very life when he weighed just 1 pound 3 ounces at birth, my son who’s survived things I would say I cannot imagine, but I can because I was there. I feared he wouldn’t progress. I thought he would never understand me or be able to communicate effectively. Last week, I asked him if he was ready to go to bed. He looked at me, shook his head emphatically and said, “No night-night!” So, naturally, we stayed up.

Our dreams for him are still very much alive. The truth is, our dreams for him changed the moment he was born. “I hope he’s healthy” became “I hope he lives through the night.” We were forced to instantly reevaluate our child’s future, and make changes accordingly.

If there’s one thing we know about Avery, it is that he will accomplish great things. At 17 months he sat up and I cried heavy, burdened tears because I thought he never would. Within weeks, he could army crawl like he was made for it. The first time he looked at me and said “mama”, a piece of my heart that was broken by fear mended. At 28 months old now, he is trying to walk. He is bright, beautiful and loving. He has polymicrogyria, cerebral palsy and so many other diagnoses. But those diagnoses do not make him. They are simply small fractions of who he is.

What has changed the most since his diagnosis? Me. I am happier because I get to spend each day watching my son grow and learn. I get to teach him and see his eyes light up when he gets it. I am here to see him fall, and face challenges with a left hand that simply will not work. I am grateful for even those sad moments, because I recognize how different our lives could be. I know how debilitating that fear was.

I know that we will always fear the future for Avery. We may often question if, when and how he will be able to do certain things. Each day will be a new beginning though; each day a blank canvas for Avery to paint. He will paint it like only he can. He will paint it with progress. He will paint it with each feat he accomplishes. My son’s life will be a masterpiece.

He may not be “normal” to another family, but he’s our normal. He was meant for us, and we are so blessed to have him. Polymicrogyria, cerebral palsy, fear and all.

Follow this journey on 25 Weeks to Perfection.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


There are days when I struggle with my cape.

If I can be honest for a moment (without judgment), I want to make something very clear. I don’t believe there is anything special about the DNA of special needs parents. When I wake up in the morning I am tired, overwhelmed and in need of a few more hours of sleep — just like any other mother. When the sun is shining a little brighter, it is easier to get up, strap on my utility belt and take on the world. When life brings rain, lifting my legs over the side of the bed and planting my feet on the floor seems almost impossible. The thought of diapers and bottles and therapy and school and appointments and stretches and routines and pickups and drop offs — and working my nine to five — are enough to make me want to crawl right back under the covers and disappear.

And then I see my lovely son’s face, and I can’t wait to start another day with him.

Motherhood is a little different for moms like me, moms who start their journey in the NICU, praying next to incubators that their child will survive. We are immensely grateful, because of the miracles that grew out of that pain. We don’t want to seem unappreciative or weak; we don’t want to be pitied.

However, his premature birth was my premature birth; there is no separating the two. It took a toll on me. From my first day of being a mom and his first day of being a son, life has required us to fight. There was no grace period. And yes, that is pretty darn hard. It is hard and it hurts to watch your child have difficulty with things that other children are learning. It is my love for him that makes me want to always be “mighty,” and my love for him that often takes so much of me that I don’t feel mighty enough. That is a preemie mom’s great catch-22, and I am sure it is the same for his dad.

Four years have passed since I became a mother, and for three of those years I have also worked a full-time job. His dad and I have juggled and compromised and tried our best to give our best to our little boy. My best comes with the standard kisses and hugs, but it also includes stretches and speech sessions and siting on the floor encouraging him to sit unattended (we are currently working on his balance and ours).

My son Jharid was born 16 weeks early and spent five months in the NICU. He has cerebral palsy, is nonverbal and has developmental delays. My Jharid is also demanding, assertive and smart as a whip. Plus extremely cute and funny. I find great joy in him and in caring for him. Raising him has raised a new level of happiness and gratitude in me. Most days, I love it. I find my daily dose of perspective in our “to do” list. It thrills me to see him master new skills and discover new ways to move.

mom holding her smiling son in black and white photo
Kaleena and Jharid.

His progress is my purpose.

Then there are days, though few and far between, when the only thing mighty about me is the level of my tiredness, though I dare not communicate those feelings to the world.  Most certainly, there are days when he finds it hard to deal with me. He doesn’t always feel like wearing his cape, either. It is on those days that we leave the goals behind and focus on nothing. Those days are the best for the both of us. At some point, even the sun must set. Every now and then, moms and dads, we must take a moment for ourselves. We can’t save the world if we aren’t strong enough. You matter in a mighty way, too. Take care of you. It is absolutely OK to not feel mighty all the time, and to say it out loud. Even in those moments, you are still enough.

There are days when I struggle with my cape. And on those days, I don’t need someone to help me put it on. I need someone to tell me it’s OK to take the sucker off.

need someone to be mighty for me.

Follow this journey on Praying4MyPreemie.

The Mighty is asking the following: Write a love letter to another person with your disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


March is Cerebral Palsy Awareness Month. This year I wrote a letter to cerebral palsy. The purpose is to raise awareness about how cerebral palsy affects the lives of parents who have children with cerebral palsy. I hope one day my son will be able to write a letter telling the world what it is like to have cerebral palsy, firsthand.

Dear Cerebral Palsy,

You entered our lives four years ago, and most things have not been the same since. The adversity you bring is pervasive, but I force myself to see you as an opportunity to learn and grow.

You are an indefinite source of challenge and struggle, but because of you, I am learning to be fulfilled by unexpected, fleeting moments of happiness.

You’ve forced me to face frightening, complex and ambiguous information about the thing that matters most to me, but because of you, I am learning to stand in the space where answers don’t exist, and solve problems anyway.

You’ve dared us to give up, time and again, but it is because of you that I know I’ll keep going no matter how tired I am, how much pain I’m in and how difficult it is.

You are the reason why my son can’t tell me his daily needs and deepest wishes, but because of you, I developed the ability to know what every nuance in his behavior means, which in turn has made me feel more connected to him than I ever thought possible.

You’ve caused us to be isolated much of the time, but it is because of you that our lives have been touched by some of the most kindhearted, devoted people that walk the earth.

You’ve made me dread the possibility that some people may be unkind to my son for reasons he can’t control and does not deserve, but it is because of you that my heart is open and I give everyone a chance.

boy wearing green shirt sitting on the floor
Lisa’s son

You are the reason why people stare at us in public places and ask insensitive questions, but because of you, I no longer stare at individuals with disabilities. When I speak to them, I look them in their eyes, smile warmly and say, “Hello.”

Seeing infants, children and adults you’ve touched has made me question basic fairness in life, but because of you, I see something alive and tender inside each person that cannot be taken away from them nor completely hidden.

Some may wonder what it is about you, cerebral palsy, that can make life difficult. The answer is simple, but wide-reaching. You take away volition. You make it nearly impossible for some people to walk, stand, sit, hold their heads up, move their eyes, swallow food, communicate with the world and to even lift a finger. But it is because of you that I know one of the most meaningful things in life is companionship — someone you care about deeply — and being there for that person no matter what life throws his or her way. Because of you, I know as long as I am breathing, I will be here in every moment possible to share this journey with my son. And despite whatever you throw our way, we will find a way to laugh, love and live our lives to fullest. That is something you cannot take away.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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