To the Son My Doctors Said I’d Never Have, From ‘Your Disabled Mom’


My Dear Son,

You aren’t born yet, but you will be here any day now. Your dad and I are thrilled at the prospect of your arrival because, honestly, it still seems surreal. When I was a young girl, the doctors told me I would never have kids because of my cerebral palsy.

By the time you are born, I will be three months shy of my 40th birthday, and I can’t think of a better gift. 

You weren’t “supposed” to be here, but here you are and there are a few things I would like you to know.

Being born premature in 1976 and weighing under a pound, the doctors told your grandmother that your uncle and I wouldn’t survive, but we did.

I know it sounds strange to be proud of the fact that you already weigh more than I did at birth, but I am.

I won’t be able to carry you like the other moms, but I will hold you as close as ever.

I won’t be able to take you on long walks in your stroller, but I will tell you wonderful stories, sing silly songs and tell you how much I love you.

I won’t be able to keep up with you once you learn to walk, but I will be there to catch you when you fall.

I won’t be able to hold you on my hip while grocery shopping, cooking, chatting with a friend or the million other things moms do, but I will always give you my undivided attention.

I won’t be able to play tag or hide-and-seek with you, but I will take you on treasure hunts, build blanket forts and maybe we’ll even have dessert for dinner!

I may not be able to explain why people stare at us sometimes, but I will tell you it’s because you are so special.

I won’t always be there to protect you from the mean things people might say, but I will give you the knowledge and strength to teach them another way.

I may not always know why people may ask you why your mom walks “funny,” but I will always encourage you to be true to yourself and unafraid of who you are.

I hope I won’t always be seen as your “disabled mom,” but I do hope that someday you will understand why I take so much pride in that label.

I won’t always be able to do things the other moms do, my precious son, but I will always do my best for you.

Love,

Mom

Sara Reiner.2-001

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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5 Questions to Stop Asking Wheelchair Users Immediately


It seems like almost every day I’m faced with an awkward encounter with a stranger, whether it be in a coffee shop, the mall or even on the Internet. More likely than not, that awkward encounter centers on questions about my disability, or how I live my life as a disabled person. I recognize that nine times out of 10, people aren’t trying to be inappropriate or make me uncomfortable, but are just genuinely curious or concerned. That doesn’t mean their questions are OK.

Every time I address this, people’s response is always, “But I don’t know what to say.” I decided to help them out, in easy-to-use “listicle” form, of course. So without further ado, I present to you five questions you should never ask a wheelchair user, and what you can ask instead.

Designed by Karin Hitselberger

1. “What is wrong with you?” / “Why are you in a wheelchair?” 

Typically, when I get this question, it’s from a complete stranger who has not even bothered to say hello or speak more than two words to me. Starting off the conversation by asking me about my private medical history is never OK, and if you feel compelled to ask me about my disability, do it with a little more tact and respect. As a lifelong wheelchair user, I will tell you there’s nothing “wrong” with me, and that my wheelchair is just a tool I use to get around. However, when this is the first question you ask, it shows you don’t see anything else except my wheelchair.

What to say instead: “Hi, how are you?” I want to be seen like a person just like everyone else. This is a much better way to start a conversation with a stranger than to immediately start asking about their wheelchair, or other visible disability or medical condition. When you get to know somebody better, it may be OK to ask them about their disability. Just always make sure you do it respectfully. Questions like, “What’s wrong with you?” are never OK!

2. “Where is your parent/caregiver?”

I often get this question from strangers who assume I need help doing something when I’m out at the mall or in some other public space, but this question is super problematic because it strips me of my competency and assumes I always need help or supervision. I am a 24-year-old woman, not a child, and I don’t appreciate being treated like I need a babysitter.

What to say instead: “Can I help you?”/”Do you need some help?” If you see a disabled person out in public, and it looks like they may need help, the best thing to do is to simply ask them if that’s the case. This gives the person the opportunity to accept the help if they need it, or politely decline it if they don’t, and respects their autonomy. Just remember, if somebody declines your offer for help, respect that and move on.

3. “Do you have a license to drive that thing?”

I get this one from people who think they’re being funny by making some kind of driving joke about my wheelchair. It can come in many variations, including but not limited to: “Can you get a speeding ticket in that thing?” “Can you get a ticket for drinking and driving in that chair?” etc. The thing is, these jokes aren’t funny, and I’ve heard them 1,000 times. All it does is make me feel uncomfortable and create an awkward situation where neither person knows how to respond.

What to say instead: “Hi, how are you doing?” It seems people usually default to awkward wheelchair jokes when they don’t know what to say but want to say something. These tired and overused jokes just make wheelchair users uncomfortable and elicit sighs and eye rolling. As with the first item on the list, a simple hello is a much better option.

4. What would she like to eat/drink? This isn’t really a question directed toward wheelchair users, and that’s exactly the problem. So many times when I go out to places such as restaurants, bars, or coffee shops, particularly with a non-visibly disabled person joining me, whoever is serving us will automatically ask that person what I would like to order. This is problematic because it automatically assumes I can’t speak for myself and need someone who appears able-bodied to do it for me.

What to say instead: “What would you like to order?” The solution in this case is quite simple. Instead of addressing the question at others, ask the person what they would like. If for some reason they can’t answer, others will let you know and step in, but you’re always better off talking to a person, rather than ignoring them and speaking to those around them.

And finally…

5. “Can you have sex?”/”How do you have sex?”

Bonus points for this variation: “I’ve always wanted to have sex with a girl in a wheelchair, are you interested?” I can’t believe I actually have to write this, but I’ve gotten this question more than you can possibly imagine, and it is never, ever OK. I really don’t know what possesses people to ask questions like this. I typically hear it at clubs, bars or on dating sites, presumably as some sort of pickup line. However, it is definitely not a pickup line, and it is definitely not OK. It’s awkward, inappropriate, uncomfortable and sometimes can even feel borderline threatening.

Asking a stranger about intimate details of their life is not OK simply because the person is different from you. If for some reason we’re in a relationship and you need to know the answer to this question, I can promise you, you will. Otherwise, if you’re “just curious,” as I’ve heard so many times when I’ve gotten this question, use Google! I’m a person, and I deserve to be treated with respect. I’m not here to answer any and all bizarre questions you may have about disability.

What to say instead: Literally anything else. If you want to try flirting with me, go ahead. Offer to buy me a drink, take me out for coffee, ask me to dance or just have a normal conversation with me. But do not, I repeat do not under any circumstances, ask me inappropriate questions like how I have sex! It makes me feel objectified and less than human, and it reminds me that you see me as nothing more than an oddity or a fetish.

The most important thing to remember when interacting with a wheelchair user is that we want to be treated like anybody else. The general rule when asking questions to wheelchair users is, just think to yourself, “Would I be asking this question if this person wasn’t in a wheelchair?” If the answer is yes, then go ahead and ask it; if the answer is no, then don’t. Try to think about how you would feel if somebody was asking you these questions. If your question would make you uncomfortable, then you probably shouldn’t ask me.

Follow this journey on Claiming Crip.

Lead photo source: Thinkstock Images

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


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.

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


“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.

chandler.2-001

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.

chandler.3-001

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.

two young boys in a stadium

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


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.

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


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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