Angry woman pop art.

Here’s your laugh for the day. About a year ago, I caught a really nasty cold. I have osteogenesis imperfecta, so when I get sick, I tend to break ribs and collarbones from coughing hard or sneezing repeatedly. Right as I was getting sick, my friend and I went to a Florida Georgia Line concert here in New Orleans. Maybe I shouldn’t have gone since I was already starting to not feel well, but if you’ve ever been to one of their shows, you’ll understand why it was worth it. Florida Georgia Line, Thomas Rhett and Frankie Ballard put on one heck of a show!

Right in the middle of FGL’s set, I coughed wrong and broke a rib. And it really hurt. No tears, but my friend said I got pale all of a sudden and I pretty much stopped moving. I took some Motrin and stuck out the rest of the concert, of course. I mean, priorities, right?

However, there was a lady standing next to us who was getting progressively more inebriated and overly concerned about my condition. Unfortunately my friend mentioned that I broke a rib, to which the lady replied that she was a nurse and could help. Here’s the thing: A) You’re drunk. Go away. B) Nothing they teach in nursing school is what I need when I break something. I need painkillers and heat (not ice), and to just sit there and figure out how bad it is. No doctors, no x-rays, no casts, no wraps. Just leave me alone and let me deal with myself.

But no… This lady had to ask over and over and over again what she could do. When we told her nothing for the fifteen-thousandth time, she proceeded to sit there, stroke my hand and tell me “It’s all going to be OK, honey.”

Oh Em Gee. Yes, lady, it’s all going to be fine if you stop f’ing petting me! I’m not a freaking dog! At one point I had to flat out tell her to stop touching me, to which she turned to my friend and said, “She doesn’t like me! I just want her to like me!” My friend was like, “Just leave her alone and she’ll like you a lot better!”

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I felt bad about hurting her feelings, but sometimes people just can’t take a hint. And quite honestly, she probably didn’t remember much of the night the next morning.

Lesson of the day: if you’re ever around me and I break something, don’t pet me!

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Thinkstock photo by Puchalt.

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I was extremely lucky growing up in that I had two wonderful parents who made my life as “normal” as possible despite my disability. I have osteogenesis imperfecta, or brittle bone disease, that causes my bones to break easily and grow abnormally. I am 2’7″ short and use an electric wheelchair for mobility. Like many with a physical disability, my condition does not affect my mental state at all, and I was always a straight A student. In fact, I graduated from a mainstream high school and college with honors.

For me, the most important piece of advice I can give parents who take care of a child with a disability is not to let them feel sorry for themselves. Even though I dealt with hundreds of broken bones for two-thirds of my childhood, my mother made sure that instead of sitting at home and pouting, I got up and learned how to function with pain. After all, it would be something I’d have to deal with for my entire life, and it’s better to learn effective coping mechanisms at an early age. Certainly there were days where I just couldn’t go to school due to broken bones, but those were few and far between. Mom made me want to get up and go to school, hang out with my friends, and pursue my art career. If anything, I was most upset when I wasn’t able to do these things because of a broken bone. I never had the urge to sit home and do nothing, and still don’t.

This leads me to my second piece of advice – school inclusion. I’m a huge advocate of including kids with disabilities, both physical and mental, in mainstream schools. Not only is it socially beneficial for the disabled kids, but it also teaches the rest of the student body that everyone’s different, and that’s OK. That is an extremely important lesson for them to learn before they get out into the real world. Although very few grade schools wanted to admit me into a regular classroom rather than a special ed class, my parents knew that the social and mental interaction I would get from being in a class with “normal” kids my own age was invaluable. They eventually found a small private school that was willing to make the physical accommodations I needed to thrive. Certainly there were activities I couldn’t take part in, and yes, at times I felt left out and slightly bullied, but what teenage girl doesn’t? I not only had all the usual social experiences kids have, but my classmates learned that just because someone is in a wheelchair or a little different, it doesn’t mean they are useless.

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I was one of the best students in my class and eventually graduated summa cum laude from Loyola University New Orleans with a BA in Graphic Design. I now successfully run my own art and design business. If I hadn’t had a normal, challenging school experience growing up and supportive parents who pushed me, I don’t think I’d be where I am today.

As hard as it is, my last piece of advice to parents is not to over-coddle your kids despite their disability. In my case, my parents taught me how to take care of myself and eventually got to a point where they trusted me to make good decisions that would keep me uninjured (mostly). They let me go to school dances by myself, go to the movies with my friends without an aide, and trusted that if I needed them, I would call — and I did when necessary.

The fact is, things happen whether you are watching your kids every second or not. The social lessons they learn from being without you for a little while become extremely important when they get to the real world as adults. Think about when you were a kid. It wasn’t cool to have Mom or Dad hanging around all the time, was it? The same is true for your child. They need a little bit of space to evolve and to become the person they will grow up to be. I’m not saying it’s a good idea to abandon your child, but letting them hang out with their friends for a few hours without you hovering is not a bad idea.

The fact is, having a child with a disability is often hard. You have to find that precarious balance between protecting them from harm and letting them figure life out on their own. There will be times when they need you, and there will be times where you have to let them fall and learn the tough lessons on their own. I think every parent struggles with this, but the addition of a physical or mental disability definitely amplifies the problem. In the end, the best you can do is just going to have to be good enough, and your kids will later thank you for supporting them in everything they want to do with their lives.

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Thinkstock photo by Lacheev.


Because I have osteogenesis imperfecta, or brittle bone disease, it’s extremely important that I use a wheelchair that is not only stable but supports my crooked body in all the right places so I don’t break a bone if I hit a bump. My body is not standard. I have bends in all the wrong places, so my seating system has to be completely custom to be comfortable and effective. I have to be physically able to reach the controls and push all the buttons. It’s important that every detail of my chair is tailored to my needs, both for mobility and safety.

Most people don’t realize how arduous the process is to get a new custom wheelchair. There are lots of steps to take and hoops to jump through, and nothing ever goes as planned the first time. These chairs are extremely expensive, so getting funding for them is sometimes next to impossible no matter how badly you need it. The paperwork alone is daunting, and if you don’t have a good company to go through with people who know what they are doing, it is a nightmare.

The first step in finding a wheelchair is finding a local company to work with who helps you decide on a chair model, procure the correct paperwork from your doctors (which is sometimes the hardest part), submit to the insurance company, and actually alter the chair to fit your needs when it comes in (because it is never exactly right the first time). Currently I am with NuMotion.

I am so lucky — I have the best wheelchair repairman in the Gulf South. Jeff has been working on my chairs since I was 4, and have followed him from company to company as he has switched over the years. He has been doing this for so long that I’m convinced no one knows more or has more experience than he does. There are very few like me in the area, and my chairs require some very special accommodations that are a bit “out of the box.” Jeff has had to get super creative on more than one occasion over the years, and he always makes sure I am taken care of quickly when something breaks.

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Without my chair, I am essentially immobile, which is not cool. Wheelchairs are like cars. They have to have tune-ups, get new tires, new batteries, etc., on a regular basis. Insurance companies generally agree that a wheelchair like mine should last about five years, but if you really take care of them, they can last double that. I take great care of mine, so I tend to have them a little longer than five years.

I would be remiss not to stop here and also give a shout out to Butley, the manager/supervisor at NuMotion. Butley is the one that handled all of the paperwork and information gathering for us. He set up meetings with wheelchair reps, wrote up the evaluation from my physical therapist, got all necessary prescriptions and letters from my doctors, and spent an enormous amount of time with me deciding which wheelchair model would be the best fit. It had been over five years since I had gotten one, so the technology had changed a good bit and more options were available.

Butley made sure all the ducks were in a row and everything was worded correctly for insurance approval. His job is tedious and difficult, but he is a perfectionist at work and dotted every “i” and crossed every “t” for us. Ultimately, we had no major issues with insurance approval.

The next step in getting a new wheelchair is picking a model. There are several decent choices out there, but interestingly enough, the United States does not make a single one of them. Though the U.S. does make power chairs, they are generally not top-of-the-line and are lacking the stability I need. They have been known to flip easily, which as you can imagine, would be a complete disaster for someone who breaks bones easily. I’ve actually heard of people with OI flipping their chairs and trust me, it never ends well.

Based on what I know, the best company out there for making safe power wheelchairs is Permobil. Permobil is based in Sweden and makes chairs for both adults and children. My last two chairs have been theirs, and I have loved both of them. Their technology continues to become more and more advanced, and they are definitely the forerunner in the wheelchair industry. However picking the brand is only part A of picking a wheelchair – now you have to pick the right model, and there are a ton.

I have always had chairs with front wheel drive, or big wheels in the front and turning, smaller wheels in the back. However, there are models with rear wheel drive (the exact opposite), or ones with mid wheel drive, which means there are two small wheels in the back, two large wheels in the middle, and two more small wheels in the front. Mid wheel drive chairs can turn on a dime, but I’ve heard they are harder to control and they don’t always climb bumps and curbs as well. We decided that since I have always had front wheel drive and was used to it, I would just stick with that.

OK, so now we have narrowed our options down to Permobil front wheel drive wheelchairs. Believe it or not, there are still choices to make! At this point, it was a matter of  figuring out which models could be modified to include the features I needed. I wanted a chair with an elevation system for sure (so I can raise up higher as I am only 2’7″ tall) and one with a reclining option. My chair before this one had a custom recline option built in (thank you, Jeff) and I absolutely loved it. It helped me be able to sit in my chair for longer periods of time because I could periodically lay my seat back and give my back short breaks. With the amount of sitting I do at concerts and art shows, I knew my next chair would have to include a function like that as well.

I won’t bore you with all of the back and forth, but after probably a month or so of back and forth, Butley, Jeff and I (and my Mom of course), decided the Permobil C500 was the right wheelchair for me. It is actually an adult wheelchair base (all of my previous chairs had been pediatric chairs), with a completely custom seating system and control system. It not only has elevation and recline, but it also has tilt (where the entire seat, including the bottom, lays back), and the footplate is adjustable as well electronically. I absolutely love these new functions and Butley and Jeff did a fabulous job.

Now, to give you an idea of a timeline, we started the process in February of 2013 and I did not receive my new chair until March of 2014. Remember how I said nothing ever goes right the first time? Well, trust me, that is the truth!

After we chose a chair and got all of the options and choices hammered out, it was time to figure out funding. When I signed the invoice on this wheelchair upon receipt, the total at the bottom was $78,000. Yep. Seriously. Obviously we do not have that kind of money, so we had to figure out how we could get it covered. Luckily my insurance (Medicare/Humana) covered a fairly decent chunk after a good bit of arguing, and then the state of Louisiana picked up the rest.

I’m involved in Louisiana Rehab Services (LRS), which is a state/federally funded program that aims to help people with disabilities become working members of society. They fund necessities, like aides, wheelchairs, medical equipment, home accommodations, etc., that people with disabilities need in order to work. In order to get funding, however, you have to prove that you are working, which I obviously have been for several years now. They helped me out with a few accommodations in college, and we have been working with them since. Although it is a lot of paperwork, it’s a great program and helps a lot of people become working members of society who wouldn’t necessarily have the ability otherwise. A shout out to my LRS rep, Ali, is definitely needed here. She is on it and gets everything I need (which is usually not a lot) approved and pushed through in record time. Again, I’m super lucky to have such a great team working with me.

Both the insurance company and LRS required a stack of paperwork, mostly from Butley, Jeff and Ali. I had to have a formal evaluation written up by my physical therapist that outlined exactly why I needed each feature on my chair that we were asking to be funded. I had to have a formal appointment with my orthopedist (whom I only see maybe once every three years) to write up a prescription, and it had to be worded exactly right. He didn’t write it correctly the first time, so I had to get another appointment, go back, and have him do it all over again. He even had to write an accompanying letter. It was absolutely ridiculous and took a lot of time, but in the end it worked. I guess that’s all that really matters.

Ten months down the line the chair was OKed by insurance, LRS, and the wheelchair company. It was ordered, and we received it two months later. That was a great day! Of course it was not 100 percent perfect when it arrived and needed some serious seat modifications. For one thing, I remember the back of the seat being too high, and I couldn’t reach the controls at all. Jeff spent hours that day and the next week as I found more issues as I drove it. He was extremely patient and eventually everything was perfect.

It took me several months to get used to driving this chair. Although it is the same brand as the one I used before, it drives completely differently (it’s much heavier at 400 pounds and I think that is a lot of it). It’s also about an inch wider, two inches longer, and much more powerful than my old one. It was kind of like switching from a Kia to a station wagon. Yes, I ran into walls, and even pulled my mother’s bedroom door off the hinges (which I had to pay to fix, by the way). I didn’t risk taking it out of my house for the safety of the public for about three months (I continued to use my old one in public for a little while just to be safe). After a few months, driving it became second nature just like the last one.

We also had to have my new wheelchair and the lift in my van modified to be able to load it and take it places. It is just under the weight limit for the lift, so we were cutting it super close. There was a moment where I wasn’t sure we were going to be able to work this out. After all that and checking and double checking everything, including the loading in the van issue, for it to not work at that point would have been a disaster. It’s not like we could just return it and let someone else buy my custom wheelchair. It doesn’t work like that.

People don’t realize how much we have to go through to get these chairs; thus they don’t understand why I lose it when they are in danger of getting wet, dirty, dropped, etc. Not only are they extremely expensive, they are also not easy to fix. You can’t just go to Walmart and get spare parts. As I mentioned, these chairs are made across the pond, so sometimes ordering parts can be a hassle. On the plus side, Permobil has an outlet in Nashville, so even though my wheelchair had to be made in Sweden, we can usually get parts for it here in the United States (usually). That is another major advantage to using Permobil.

My wheelchair is not a toy. It is not a buggy or a scooter. It is a very specialized piece of equipment made just for me that is virtually irreplaceable. It is my main source of mobility and gives me an independence that nothing else can. When I’m driving it, it’s like an extension of myself. This is why I take such good care of my wheelchairs. I try my best to keep up with what they need, don’t overstress them, and try really hard not to put them in any situation where they can get damaged. Jeff is always amazed at how well my chairs do and how long they last. I actually managed to make a set of batteries that should only last two years last eight. Like I said, I take good care of my wheelchairs!

I just want to wrap this up with a very big “thank you” to my wheelchair guys, Jeff and Butley. Jeff has become practically family over the years, and I know I can depend on him to come running any time I call him having a panic attack because something is broken. Butley has always gone above and beyond to get me what I need, and I appreciate it all so much! Y’all understand how essential my wheelchair is in my life, and you always make sure I’m completely covered. Thank you again!

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I have osteogenesis imperfecta, and sometimes people say really irritating things to me! Here are a few of them.

1. “Mommy, it talks!” — a 6-year-old after I politely said hi when I caught her staring at me.

2. “How did you get that way?” Uhh… Depends on what you believe.

3. “Does it hurt to break a bone?” What do you think? How about I run over your toes with this 400 pound wheelchair and we’ll see how you feel.

4. “It’s eating chicken wings all by itself!” — Exclaimed by an old lady to an entire food court in a mall.

5. “What a cute baby!” Dude, I’m pretty sure I could teach you curse words you never knew existed. Can your baby do that? I hope not.

6. “Can you stand up so I can pat you down?” — TSA agent. Do you think I’d be in this $78,000 wheelchair if I could?

7. “How old is she?” Directed at my aide while I’m sitting right there. Right there. This happens all the time unfortunately. I’m short, not mute!

8. “Can you have an intimate relationship?” Asked in front of an entire college biology class I was giving a talk to. I mean, I wouldn’t tell you one way or another!

9. “Can I kiss you?” Remember, these are from strangers. Uhh, no!

10. “Would you like to start off with a Shirley Temple?” Asked by a waitress when I was 25 and wearing a strapless shirt and make-up. I promptly answered, “Sure, if you add vodka to it.”

11. “Look, it drives itself!” Yeah, “it” does.

12. “Let me get you a children’s menu.” Let me get you a conk on the head.

13. “Oh you poor thing.” Only monetarily, ma’am. If you’d like to help me, I take donations to my concert-going fund.

14. “You’re going to choke if you eat laying down.” Really? 28-plus years and I’ve only semi-choked once… sitting up. I feel like I got this.

15. “You are so adorable.” And they mean that in the 5-year-old way. I’ll show you adorable…

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Meet Lexie, my 7-ish year old sheltie/border collie mix and trained service dog. We rescued Lexie about five years ago from the Gulf Coast Sheltie Rescue in Pensacola. She had been found five months prior running on the interstate with a child’s leash attached to her, had heartworms, and knew absolutely no manners or obedience. Though we did not want a puppy, we basically got one in adult form. She barely even knew her name.

Originally, I wanted to get Lexie into competitive dog agility. It turned out that Lexie was pretty good at agility, but she didn’t love it. She was definitely only in it for the treats! Also, her joints are not the best, and we were afraid to really push and cause permanent damage to her back and shoulders.

Being part border collie, Lexie needs a constant job. She is extremely smart and extremely busy… and bossy. We decided that maybe she could be useful as a “help dog,” or service dog for me. She is big enough to pick things up off the ground and hand them to me, push elevator buttons, etc. After getting her through basic obedience and teaching her a few silly pet tricks just for fun, I called Ann Becnel, and we started training.

Most dogs don’t naturally pick up objects that are useful to humans – pens, pencils, keys, phones, wallets, etc. – and hand them back to said human. Think about it; when your dog grabs your shoe or sock, they go running off with it and expect a chase, right? Yeah, Lexie was exactly the same way when we started. Actually, chase with her toys is still her favorite game, but now she knows the difference between play time and work time.

Our first lesson in service dog training was a simple one: Lexie got a reward for simply touching the object with her nose that we wanted her to eventually pick up. In this case, we found a small, felt bag that was not only easy for her to grab, but we could stuff it with treats to make the nose-touching come more quickly. By the end of the lesson, Lexie only got a treat if she opened her mouth to the bag and at least attempted to grab it.

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Slowly but surely, we went from nosing the bag, to licking/biting the bag, to holding the bag for longer and longer periods of time, to going to get the bag from far away, to getting the bag from far away and putting it in our hands. Granted, I wasn’t able to teach all of this by myself, but Ann or Mom would teach the basic behavior, and then we’d translate it to me.

When Lexie was confident getting the bag and handing it to me on a low bench when I was at her level, we started challenging her more. She then had to hand me the bag when I was in my wheelchair, on a higher table, in my bed, etc. We then translated the “get it” command to other objects, easy ones first then harder ones. Pens, pencils, paintbrushes, cloth, or anything wooden or soft are fairly easy for dogs to pick up and don’t taste bad to them. Bigger things, like the cell phone, remote controls, keys etc., are a bit harder and take more time for them to understand. Luckily, Lexie is a total food hound and super smart, so we didn’t have a whole lot of trouble getting her to brain to click in. She does practically anything for food!

Once Lexie was picking up several things successfully at home in various situations, we started taking her out in public to help me out. It’s also essential that all service dogs know how to behave in public and are trained to focus solely on their owners while in public spaces. Of course we had to work on how Lexie walked on a leash attached to my wheelchair, not greeting every person she saw, not barking in public, etc. Lex has pretty good common sense though, so none of these behaviors were hard to train. With her service dog vest on, Lexie is now allowed virtually anywhere with me. We’ve taken her to the mall, Michael’s, different shops, restaurants, bars, meetings, etc., and had her practice picking things up everywhere we went. We’ve even had her take my credit card from a cashier and hand it to me.

Within a few months, Lexie had the “get it” command down pat in any situation. Again, Lexie is very smart and has a mind of her own and a smart ass attitude, so if someone like my mom or my aide asks her to get something for them, she often times looks at them and says, “You are capable, get it yourself.” Now, she never does this with me, I think because she knows I actually can’t get said object (and she’s supposed to be my service dog), and she will sometimes get me things without me having a treat in hand. Of course, Lexie is ultimately in it for herself and treats play a major role in getting her to do what we want.

Teaching Lexie to be a service dog was not only useful to me, but it gave us something to bond over. Teaching a dog a trick like “get it” takes a little bit of training every day, so it makes you spend more and more time together. Lexie is also the only one of our three dogs that is a service dog, so the fact that I can put her vest on her and take her on outings by herself makes her feel special. And trust me, Lexie loves to feel special. Getting her out in public regularly and teaching her different behaviors has literally turned Lexie into a different dog. She still has a few bad habits, but when her service dog vest is on, she is a perfect angel, and I can trust her to behave in any situation. It amazes me how good she has gotten when I look back at where we started five years ago.

If you have a hyper dog that needs to learn some manners, I highly suggest getting into agility, obedience, therapy, or service dog training. It will not only give them a purpose and calm them down, but it will also give you two a stronger bond.

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Last week my son Finley let me know that a girl in his class laughed at him for being short. He told me, “She just said, ‘You’re short! Haha!’”

Finley will always be short. Osteogenesis imperfecta is a form of dwarfism. Being short is part of him, and I suspect it will cause some frustration in life. Kids already pat him on the head and talk about how cute he is, or say he’s like a baby. That fires me up. You think he’s a baby? That “baby” has been doing math in his head and reading since he was 4. (Simmer down, mama!)

But here was the clincher about that “you’re short” comment. He laughed too. He said it was a joke, and it was kind of funny. Also, he said the girl is his “friend,” and so she probably wasn’t being mean… “Right, Mom?”

My blood was bubbling like the gravy under spuds in a shepherd’s pie. There was so much for me to unpack here. First and foremost, my very quick anger that is right under the surface, as I am sure it is for many other disability mamas. We tend to be a sharp breed of women with tempers taut as slingshots, ready to fling a rock at anyone who hurts our kids. Do not mess.

OK, so first: A kid laughed at your body, son. She made your body a joke. Your body is never a joke. We do not make open observations about the bodies of other people unless it is a compliment. And even then, make sure it is a neutral compliment that does not objectify others. Better yet, keep your yapper shut.

Second thing, your body is not a joke to you. Your body is no joke. It is a body we thought might never walk, that we prayed would feel no pain. It is a body I have kissed and smelled with delight. It is a body I have pushed into a sturdy splint to help you, even when it’s painful. It is a resilient, gorgeous piece of flesh and bone that I am in awe of daily. It heals and goes on. It is no joke.

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Now listen, I know. These kids are 6. They might not yet know that you cannot or should not openly mock someone’s body for whatever differences it has from yours. You think it, you say it – that is the kid code. Plus according to Finley, this girl is his friend. The very fact that she is his friend means she’s not making fun of him… right?

And that’s where I get stuck. I do not know. And I know that “You’re short! Haha!” is the least of my worries for the mockery he might endure from his peers’ “witty” young minds. But I want this to be taught to my child and yours, because if a presidential candidate never learned that we don’t openly judge, mock and touch bodies that aren’t ours, I can surmise that many other children also did not.

We all need to remind our kids that other people’s bodies are just that… other people’s. We also need to remind our kids that their own bodies are beautiful and deserve respect, regardless of how they look or how they are different. Respect yourself enough to call it when something is not funny. When someone talks about you or your body in a dismissive way, know that person might not have cruel intentions, but tell them what you will not stand for. Have pride in your body and know that no one is 100 percent happy with their own.

It seems like it should be easy, but I know it is not. I know that my reaction to this comment from his friend was surprising to Finley. I could see his confusion. But I think he brought it up because deep down he knew it didn’t feel good, and he wanted to know my opinion on the topic. I’m glad we had the conversation.

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