7 Things I Wish My Loved Ones Knew About Living With Disabilities

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My name is Adina, and I have cerebral palsy, PTSD and major depressive disorder. Often times when it comes to my way of life, even those who know me may be at a loss for words. I wrote this article in the hopes that it will make our dinner conversations a lot less awkward. Starting a dialogue is and always will be an important step in advocacy. Here’s a list of seven things I’d like my friends and family to know about living with disabilities.

1. When I say “I’m tired,” I mean I’m exhausted.

There’s a chance I’ve canceled plans because of this, but it means the world to me when you continue to invite me out, because there will be days where the disabilities don’t win. Asking me out to do things is a way of rooting for me more than you know, and I appreciate it very much.

2. I’m glad your health regime is working for you, but that’s your health. This is my health, and what works for me might be different.

Listen, it’s super cool that you feel as though your yoga instructor and detoxifying waters would really benefit me, and I’m stoked you found something that works for you, but my body is different, and I need my medications like I need oxygen. Please understand and be respectful of this. My body, my existence. My choice. Your body, your existence. Your choice.

3. I am allowed to hate my disabilities.

I am allowed to have bad days. I am allowed to have days where the disabilities win, and I toss up a white flag of surrender in a way that Dido adamantly refuses. I am allowed to hate my cerebral palsy. I am allowed to hate my PTSD. I am allowed to hate my major depressive disorder. Do not mistake my bad days for self-loathing, and for the love of all that is holy, please don’t toss up your complaints about my disabilities in terms of our dynamic. I know being a loved one has its difficulties, but if you think having me in your life is burdensome, you should try living as me sometime. I’m just sayin’.

4. Inclusivity is far more than introducing me to your other friends.

It is making sure I get ample notice to schedule my rides in time, and knowing you don’t mind picking me up before we go somewhere. It is making sure the place we’re going is accessible, or a phone call and a game plan in regards to the new venture. If you forget about my wheelchair, you are forgetting a part of me. Don’t take offense when I shut down plans due to inaccessibility. If I feel as though my wheelchair is going to speak for me the majority of our outing when all I really want to do is spend time with you, it’s not going to be a good time. If you don’t show care of my basic needs, you are showing me that my needs aren’t that important to you.

That said, sometimes sh*t happens, and I may need help parking my chair in order to take a piss, or I may need attractive gentlemen to assist me in getting my chair up a set of stairs like the Queen of Sheba. So long as you’re ready for a little bump in the road and don’t regard it as that big of a deal, neither will I.

5. Sometimes I feel like a burden to you.

And I will want to talk about it. These conversations are awkward, painful and awfully important. Chances are, I will say something off-handedly. Like, maybe I heard you talk about how you used to help me get my shoes on in the morning, or maybe my wheelchair was a really big pain to get out of your truck. Perhaps I drunkenly ran over your foot? Who knows? But it’s important. I do not want to be anyone’s obligation. I do not want to be anyone’s path to redemption. I want to be your friend. I want to be a part of this family. I want to know there are pieces in my life bigger and louder than the ones that society has deemed unlovable. I want to know I should not say thank you for loving me. That I am worthy of love and a place within this home, this social circle, this life. So let’s talk about it. Please.

6. My disabilities do define me (in some aspects of my life).

I am an artist. I am your friend. I am your sister. I am your daughter. I also happen to have four disabilities that stop me from doing certain things. I do not have the same rights you do. I cannot do everything you can do “just in a different way.” I am disabled, and not because my needs are different, but because society at large deems these needs as not important enough to meet. I cannot have spontaneity in the way that I yearn to as a typical 20-something. I go through doctors the way you swipe left on your Tinder profile.

I am not ashamed in living this life of difference. When you say you don’t see my disabilities, I know you actually mean, “I see the person you are with these disabilities,” but when you use phrases like, “You’re just differently abled” or “I don’t see the wheelchair,” it kind of makes me want to throw up in my mouth a bit. You’re basically saying, “I don’t see the discrimination you face every day.” Even though you and I know you mean differently.

7. Know that I’m ready to roll over some toes and kick some a*s whenever you need.

Seriously. Just call me up. I’ve got this.

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8 Common Things That Can Make Me Fall as a Person With Cerebral Palsy

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“Look down, feet up. Look down, feet up.” This is my continuous train of thought whenever I’m walking. Instead of wandering thoughts about what I’m going to do for the rest of the day or striking up a casual conversation with people on my way to class, my primary concern while walking is not falling down. I don’t like talking about my cerebral palsy (CP) and how it affects me simply because I don’t want anyone’s pity. I don’t want to be looked down upon as “that girl with cerebral palsy” or “that girl who walks awkwardly.” I try to not let my cerebral palsy define me, but sometimes it gets in the way.

The most obvious example I can think of is randomly falling down. Y’all, I fall down way too many times. This is due to my lack of coordination and horrible balance. Anything and everything will cause me to fall, from not picking up my toes to a random bump in the road. That’s why I always have to look down whenever I walk. My brain signals aren’t wired to where I can easily walk on whatever terrain I want to. Instead, I have to pick and choose where I place my feet and keep a conscious mind about how I’m going to travel from point A to B.

This, in turn, leads me to me to my main part of my post: The eight things that are evil! OK, these things aren’t evil per say, but they have the tendency to trip me up on many occasions.

In the pictures below, I’ll provide ways to get around these “evil” things by recommending reasonable accommodations and ways in which others could help me make walking a little bit easier. ( I’m super stubborn so I might resist your help.) In return, I’ll bake you cookies.

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1. My feet.

Why they’re evil: I know I’m supposed to love my feet because God created me this way, but sometimes they can be really annoying. My feet can be unreliable and slip under me without any notice. They have a mind of their own, and sometimes I wish they would behave.

What you can do: Not much. And I can’t saw off my feet since that would be really painful. Just don’t awkwardly stare if you see me swaggering down the hallway. I have eyes on the back of my head.

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2. Cracks in the sidewalk.

Why they’re evil: Ugh, if only sidewalks were one big sheet of concrete! These cracks are evil not only because if you step on one, they can break your mother’s back, but if I forget to pick up my toes, I’ll face plant into the concrete.

What you can do: If you’re walking with me, remind me to watch out for things like this. Most of my falls are due to me not paying attention to the pavement in front of me, and then Chandler takes a tumble.

3. Stairs with no handrail.

Why they’re evil: Stairs with no handrail are the equivalent of me walking on a tightrope. I can’t go upstairs without a handrail, so if I choose to venture up these stairs, I either feel super confident or incredibly scared that I’ll make a fool out of myself in public.

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What you can do: Yay, there are options here! The easiest way you could help me is by holding my hand as I walk up the stairs. I’m starting to carry hand sanitizer in my purse, so if germs are a thing for you, hopefully that will ease your fears. I promise I’m not trying to flirt with you if I ask you to hold my hand; I just need it for balance!

Another thing you can do is advocate for more handrails along stairs. This is super important to me, and not only will it eliminate the need for you to hold my hand, but it will help plenty of other disabled individuals, too.

The third and most preferred option is to find me a boyfriend so I don’t have to feel awkward when holding his hand. I mean, honestly, that’s the only reason why I want a boyfriend. Who needs romance anyway?

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4. Uneven surfaces.

Why they’re evil: Uneven surfaces are so unpredictable to me, and since the mechanics of my feet don’t work right in the first place, adding an uneven terrain makes walking that much more difficult.

What you can do: Ask for my hand or try to find another less bumpy path. There are also ways to add yellow paint to uneven areas of a sidewalk to warn a walker there’s uneven terrain.

5. Curbs

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Why they’re evil: I understand the primary purpose of curbs is to help people not get run over by cars, which is necessary and important. As stated earlier, I can’t go upstairs without handrails, and I can’t get up curbs without handrails either. This is a big problem I’m still working on, but it gets in the way of not only me, but many other individuals who are in wheelchairs or walkers.

What you can do: Help advocate for more ramps, handrails or wheelchair-accessible places. If you see me awkwardly standing still at a large curb, feel free to hold my hand or find something nearby I can grab onto to get my balance.

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6. Grass

Why it’s evil: Now don’t get me wrong, grass is super pretty. It’s important we have enough grass in the world to help our ecosystem and aid our environment. But just because it’s pretty and green doesn’t mean I don’t fall on it. Grass is super uneven to walk on since most of the soil on the ground is uneven.

What you can do: Please don’t start a petition to remove the grass everywhere so I can walk. Just hold my hand or something.


7. Gravel

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Why it’s evil: The type of gravel pictured here doesn’t seem so bad, but once I start walking, the rocks start flying. There were way too many memories of me in elementary school constantly going to the nurses’ office because I fell for the umpteenth time slipping on some gravel. My bad, school nurse, my bad.

What you can do: Please don’t remove the gravel by hand because it’s gross. I’ve tried doing that and had really dirty hands in the process. Also, don’t start a petition to remove all of the gravel in the world, because it’s important for playgrounds. Just hold my hand. If I start to slip, follow my body and try to catch me if I fall, which I might do (sorry in advance!).

8. Dirt

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Why it’s evil: Ahhh, dirt. I fondly remember playing with you as a kid. However, times have changed, and I no longer see you as a friend but rather an enemy. Dirt is evil because it’s obviously dirty, and no one really wants to step in a pile of dirt unless they’re participating in a social norms project. Since I’m clumsy and also rather unlucky, there’s a chance that dirt could easily turn into mud, and I could sink into a mud pit but let’s not get ahead of ourselves.

What you can do: If for some strange reason you find me in a dirt pit, let me see if I can get out of it first because the last thing I want is for you to get dirty, too. Be careful because I’ve noticed I can confuse dirt pits with fire ant hills. Fun memories from freshman year.

Wow, you made it this far. I’m so proud of you! I bet you’re probably intimidated by my long list of things that make me fall and are hesitant to become friends with me. However, I promise these things are temporary (and mostly fixable), and I always make light of the situation, like I’m trying to do in this story. At the end of the day, I’m just aiming for awareness of these things while trying to maintain a positive perspective.

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To the Man Who Joked That My Child With Cerebral Palsy Was Drunk

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It had been a rather lovely day at the Maryland Zoo’s “Brew at the Zoo” event. My wife, our friends and our two children at the time (we have four now) toured the zoo, and we had just made our way back to the pavilion area when you had to open your mouth.

My son, Connor, stumbled and fell, as he is prone to do, but picked himself up and continued to walk with us on our way to get some much needed lunch. As he staggered, trying his best not to take a hand or ask us to slow down, a man, thinking himself to be hilarious, told me, “You should cut him off,” implying the abnormal gait of a 6-year-old with cerebral palsy was actually caused by alcohol consumption. If anyone at the time was drunk, it was you, whose targeting of a child for your joke would have been in poor taste even if he was able-bodied. But as disgusted as I was with your joke, I was more disgusted by my own actions.

As you cackled hysterically at your attempt at humor, I merely smiled, asked my son if he was OK and continued walking. My lack of action over this incident has bothered me for four years, and while I can’t address you directly, I can still address you.

When Connor was born, having been starved of oxygen and resuscitated, it was clear he would have a difficult road ahead. I remember going numb as the pediatrician on call at the hospital that night gave me a list of potential things that could be wrong with my son, assuming he actually survived the next few days.

Later, when they issued his diagnosis, they gave me another list, this time of things that he might never do, like walk or talk. He has defied those odds, though not without adversity. The biggest of those adversities is how people treat him. I knew from my own childhood that children can be cruel, but I had no idea just how relentless they could be. Between the name calling, the bullying and the physical abuse, I knew school would be constant struggle. What I didn’t know is that an adult stranger could be just as cruel.

No, sir, my son is not drunk. Damage to the motor functions of his brain makes his movements jerky, causing him to stagger when he walks and to occasionally fall down. His handwriting is atrocious, he sometimes stutters, he might not be allowed to drive a car and he might never be a professional athlete. But you know what, I don’t care. He’s an incredibly sweet young man, a dedicated big brother, a straight-A student and has defied every single obstacle placed in front of him. At 10, he already has his sights set on attending Johns Hopkins University and is doing the work necessary now to ensure that happens.

Most importantly, he doesn’t feel sorry for himself. Instead, he makes do with the hand he has been dealt. Connor has dreams and ambition, and not a damn thing you or anyone else says is going to make him change…so stop trying.

two young boys in a stadium

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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 Share Your Story page for more about our submission guidelines.

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When People Judge Me Because My Child With Special Needs Uses an iPad Chair

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To the people who judge my use of technology,

You don’t know me, but you have already convicted me of a heinous crime. 

It started out innocently. A question was posted about a device and opinions were asked for. The results were like matches to paper. Tempers flared, and the manufacturer of the device was compared to Satan.

What device is so evil that caused such a stir? My daughter’s iPad chair. 

I had been thinking about getting one for a while. I wanted this device for my daughter badly. I had reasons for wanting this particular tool. First of all, my daughter uses her iPad daily.  You see, for my daughter, the iPad is more than just a toy. It’s a tool.

My daughter, Cary Lynn, has cortical vision impairment. The iPad has changed so many things for her, including working on her vision skills. For Cary Lynn, learning to use her vision is important. 

Cary Lynn also has cerebral palsy and is nonverbal. The iPad gives her a voice. She uses several programs on there to “talk” to me. Instead of screaming for hours because she is hungry, cold or bored, she can tell me what she needs. The iPad has opened up worlds for my child.

Finally, the iPad sits at a great angle in her chair. Her little arms that cerebral palsy has made tight and her little hands that remain clenched slowly loosen and she reaches for it. Eyes that need daily work to learn to see can swing in the right direction.

So when I tried to voice my support for the iPad chair on an early childhood Facebook page, the backlash was heavy. I was told some pretty hateful and hurtful things. The people were quick to pile on judgment and not listen to the reason. 

But technology isn’t evil. Technology kept a 24-week-old child alive in the NICU. It also put her picture on adoption sites and led her home to our family. It keeps me connected to therapies, doctors and things to help my child. It also has given my child something powerful  a voice. Without the use of technology in my home, my child would have no way to communicate her needs. To say my favorite word: Mama.

The same people who hate technology so much sure spend enough time on it vocalizing their hatred. I would think if they hated it enough, they would lead by example, shut it down and not use it. I’ve invited these people to come talk with me. To walk a mile in my shoes. To this date my invitations have been ignored. 

There will always be someone who hates what you do and isolates you, insisting they know how best to raise your child. But they don’t. I’m Mom, and I’m not going to let them tell me what works best for my child. My child has needs, and I’m not here to win popularity contests. Right now as I’m typing this, my daughter happily plays in her chair with her iPad babbling with her speech app. And I’m OK with that.   

Sincerely,

An iPad Mother

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. 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 Share Your Story page for more about our submission guidelines.

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What You're Really Saying When You Call Me 'Inspirational'

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One of my favorite pieces of jewelry is a necklace with the words “not your inspiration” stamped on it. It makes me smile and laugh, but inevitably every time I wear it somebody comes up to me and asks, “Why does your necklace say that? Why wouldn’t you want to be an inspiration? What’s so bad about that?” Then I have to explain.

There’s nothing wrong with being an inspiration if what you’re doing is actually inspirational, but as a disabled person I have people come up to me all the time when I’m doing basic everyday things and tell me I’m an inspiration just for existing. I know they mean it as a compliment, just like people do when they tell me I’m brave for being who I am, but the truth is neither one of those things is a compliment. They’re actually quite the opposite. Occasionally when random strangers tells me I’m “so inspiring,” I’ll ask them why they think that. Usually they respond by telling me they just think it’s so inspiring to see someone like me out and about and living their life. Sometimes they even add “I don’t think I could do it if I was in your position. It makes me feel so much better about my life because I know it could be worse.” For someone like me, those words are definitely not complimentary; they actually hurt.

When people — who know nothing about me other than the fact that I’m a visibly disabled woman — tell me I’m inspiring simply for existing and going out in public, it minimizes my accomplishments, and even more, it minimizes my humanity, and turns me into nothing more than a trope whose purpose is to remind non-disabled people that they shouldn’t take their lives for granted because their lives could be worse, they could be just like me.

As a disabled person, I don’t like that my life is viewed as a constant reminder to non-disabled people that it could always be worse, and I don’t like that I’m considered inspirational simply for living the life I’ve been given. Disabled people don’t exist to inspire non-disabled people or to remind them that there are no excuses in life, or that life could always be worse. We don’t exist to be feel-good stories on the 5 o’clock news when we go to football games, get asked to prom or graduate high school. Those are just normal teenage things, and it shouldn’t be any more inspiring because you do them sitting in a wheelchair or with some other disability.

When you call a disabled person inspirational for doing normal everyday things like going on the subway or going to the grocery store, I believe you reinforce the idea that society’s expectations for disabled people are so low that we don’t really expect them to do anything. Furthermore, when you make an “inspiring” human interest story about a disabled person going on a date, becoming prom queen or even simply having friends, I believe you reinforce the idea that disabled people are somehow less human and less desirable than everybody else, and that if we have “normal” life experiences they are seen as inspiring, instead of realizing that we should expect and deserve those things just like everyone else.

Don’t get me wrong, there’s nothing bad about being inspiring. But I want to be inspiring for what I do rather than simply for who I am. I want to be inspiring for doing something truly inspirational. I want to be inspiring for the changes that I make in the world, rather than the fact that I do them sitting down.

Follow this journey on Claiming Crip.

The Mighty is asking the following: What’s one thing people might not know or realize about your experience with disability and/or disease, and 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 Share Your Story page for more about our submission guidelines.

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A Request for RJ Mitte, From a Woman With Cerebral Palsy

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Dear RJ,

Hi. I’m Alice. I’m 20, live in England and go to Sheffield Hallam University to study film and screenwriting. I don’t suppose you’ll have heard of me, but that’s OK, because until recently, I hadn’t heard of you either. Not until the video changed everything.

When I was 12 months old, I was diagnosed with cerebral palsy (CP). My parents didn’t know what to expect, but as I grew older it became apparent that I couldn’t walk. I now use a powered wheelchair and have a scoliosis curve in my back. It’s not developing, however it aches a lot, which is a pain. Enough of the negative stuff though; that’s not what we’re about.

What we are about is being active. A few weeks ago, I posted a little flashcard video onto my Facebook page, holding up little paper notes that gave details of me and my story; I eventually want to be a director/screenwriter, making movies in Hollywood. I also want to make the world a better place. People must have liked it, because it currently has 13,800 views at this time of writing, and I’ve been asked to give motivational talks. I’m sure you’ll agree it feels amazing to have people admire you, when previously all we might’ve gotten were awkward questions and patronizing tones.

In the middle of all of this, a friend and I were talking one night, and she mentioned you to me. I’m so out of the loop with TV that I originally thought you were the guy who played Jesse Pinkman (oops!), but a quick Google search proved me wrong. I read up on you and found myself open-mouthed, because it was as if someone had just gone into my brain and pulled out thoughts I’d been keeping to myself for years.

Growing up with CP, as I’m sure you’ll agree, was tough, because I was in a halfway house between disabled and able-bodied. I didn’t want to be characterized by my disability, but rather my passion for books, painting and film soundtracks, and when you have a disability, you tend to be grouped together with people where the only thing you might have in common is your disability. That said, I didn’t really get on with able-bodied kids much either. There were a few, admittedly, who were accepting, but on the whole they seemed shallow and didn’t seem to realize how hard life could truly be. I’ve been in the halfway house ever since; while in no way was I going to try and hide my disability, there was also no way I was going to be cuddly and cute, either.

Then there you were, with an impressive acting career under your belt, a modeling contract and an empowering activist role. I decided to watch “Breaking Bad.”

There is a scene in episode two of “Breaking Bad” where Junior is in a changing room. He can’t put on a pair of jeans, and he pulls a face, rolling his eyes up to the ceiling as his dad comes in to help him. I know that face, because I’ve pulled that face. It is the face of frustration and annoyance that you can’t even get dressed by yourself, and you feel weak and pathetic. It is a face that only an actor who had truly experienced CP would know how to do.

Please, RJ, if you get a chance: Watch my video. It’s not long, about four minutes. I genuinely think disability rights may well be the biggest equality fight of the 21st century – and you can tell it’s an issue because no one talks about it. No one fights for us, and it’s inequality of the highest order. I am 100 percent behind you when you say disability is strength, not a weakness. We deal with so much negativity every day – from people around us, from inaccessibility issues, sometimes even from our own bodies that cause us so much discomfort. What’s weak about that?

I’d love to collaborate with you on bringing disability rights to the forefront. You’re speaking what I’ve been thinking all this time, and the reaction I got from my video shows it is time for change. Let’s be strong, be an example, and show the world exactly how strong people with cerebral palsy are. Let’s prove to the world we’re not breaking… we’re bad.

All the best,

Alice

Just a little video I made. Hope it gives you motivation! Please share, and don’t forget to check out my other films at https://www.youtube.com/user/HeartOfCelluloid/videos?view=0&shelf_id=0&sort=dd <3

Posted by Alice Barker on Thursday, September 3, 2015

 

Lead photo source: rjmitte on Instagram

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