Mathiowetz will be an integral part of the Marketing Department, concentrating on direct mail, website development, advertising, supplier relations and CRM management. “I’m excited to start my new role with such an amazing company. I hope to help others improve their quality of life by raising awareness on the importance of standing. And, of course, what makes EasyStand the best option for standing devices out there!”

For over twenty years, EasyStand® standing devices have improved the quality of life for kids and adults who use wheelchairs worldwide. For more information about EasyStand or its products, please call (800) 342-8968 or connect with EasyStand at www.easystand.com, on YouTube, Facebook, Twitter, and Pinterest.

Contact: Kyle Smith

Marketing Manager

(800) 342-8968

http://www.easystand.com/easystand-hires-new-marketing-specialist/

If you’re like me and use a power wheelchair and you have plans to fly, here’s what you’ll have to do: Get to the terminal early (you need to get checked-in first), and this is where you will get out of your wheelchair and transfer into an airline wheelchair.  Say adios to your wheelchair, it’s going in the belly of the plane for the remainder of your adventure (there’s no room for 300 pound wheelchairs in the cabin unfortunately).

And then you will be rolled onto the plane and transferred into a regular airplane seat.  They’ll strap you in, and that’s it. This is where you’ll remain until you arrive at your destination.  If you need to use the bathroom, using the aisle chair is a possibility, but more times than not you need to be able to stand up to use the bathroom.  It can be tricky (or blatantly inaccessible depending on your mood).

So why have airlines been able to get away with this for so long, despite the ADA governing public spaces? The FAA stands firm that it’s dangerous for someone to be in a wheelchair while the plane is in flight.  Apparently, we are at risk (?). But the question I have is if people can stand up and walk to the bathroom when there’s no turbulence, why can’t we roll?

In the petition that I saw today here, the 20-something man with a spinal cord injury explains almost every side of the situation on why it’s important for planes to fully accommodate power wheelchairs in the cabin: Skin issues and why we need to remain in our seating during long flights, the extra time it can take to get our power chair back, which isn’t fair if we’re in a situation where we’re transferring flights within an hour (nearly impossible without holding up the plane, pissing off the other passengers) to being just uncomfortable.

The one thing he doesn’t bring up, or maybe he doesn’t realize however, is that being in your powerchair when the plane is taking off and landing is not safe; it’s a very steep incline and decline  And this is especially unsafe for people sitting high up in a power chair. You know how crazy some takeoffs can be. The airplane seats need to sit at the right level and angle for the utmost safety.

Is there a possible solution to make each party happy in this situation? I don’t think so, not unless a brand new type of airplane is invented; maybe one that took off more like a helicopter (now that would be a pretty awesome sight).  But until then, this is our reality, and it’s for our own safety.

I won’t argue that it’s demeaning, risky (9 times out of 10 your chair will get broken by the handlers below) and not fair whatsoever, but there’s no way of getting around the safety needs of an airplane (or maybe I’m mistaken…any airplane experts out there are reading this, chime in). I too wish I could just roll right on and be done with it. Maybe by 2077 that will be a reality.

Is it safe or unsafe for people to stay in their power wheelchairs while an airplane is in flight? Or do you think they’re just worried about liability concerns? Please share your thoughts below.

Photo courtesy of Kris Krug

With an upper body that is better than most guys and a sweetheart to boot, this relatively new bodybuilder has an amazing story.

In this episode, Tiffiny and Neil discuss everything from dating and how he gets a lot of stares to his training regimen (and diet) and his plans for 2013. If you’ve ever wanted to sneak a peek inside the wheelchair bodybuilding world, then this is your chance.

Listen below. Run time is 50 minutes.

No Free Rides is brought to you by Easystand

Links:

- Neil Picone Ifbb Pro on Facebook

- Neil’s bio on Wheelchairbodybuilding.com

Wheelchair bodybuilder podcast 97

After I moved into my current apartment in Minneapolis when I started law school in 2003 I had the power to hire who came in. I made a wrong first choice with a woman who had no experience with the types of things that I need help with. I think she thought that we were just going to hang out and go shopping together. She went from helping me to another job and often wore her nicer, second job work clothes to my place. One day she got a tiny bleach spot on her black skirt and sat in my room and cried about it for 10 minutes. Duh, don’t wear nice clothes when you’re working with bleach. She only lasted about a month before someone much more experienced started coming in instead.

Said PCA came in five days a week plus every other weekend for the next nine years. So 12 out of every 14 days were covered. I think during that time span she only called in sick about a half dozen times or so. My every other weekend PCA situation had a bit more fluidity to it. One stayed a few years, others stuck around for a few months then moved on, but I wouldn’t describe that as frustrating or unstable. For the most part I moved onto the next one pretty seamlessly.

But the PCA stability house of cards started to fall this past December when my longstanding every morning PCA quit out of the blue. It was a situation that slowly developed over six months starting last June when I switched my longer personal care routine to the evenings to accommodate my work schedule better. Consequently, her hours got cut from four hours a day to just two. Ultimately, her reason was that coming in for just two hours wasn’t worth her time any more. She was a nice person and a good PCA generally, but was the second kind of PCA I described in this post. Accordingly, she could be VERY frustrating to work with because despite my repeated overtures about how I wanted things done she always reverted back to doing things her way. Towards the end she did things like clear dishes out of my sink, tidy up the living room, fold the dirty clothes in my laundry basket (why?!), and other such things before she started helping to get me up—which was her primary work duty. It wasted lots of my time, and the whole routine took over a half hour longer with her than with everybody else. So I wasn’t too broken up that she decided to part ways with me—in fact, it saved me from being the bad guy by firing her.

After that my evening routine PCA started coming in for the morning shift as well. It was nice having a daily routine with a quicker pace again. But all that came crashing down at the beginning of February when a bad snow storm caused problems with her coming in for her evening shift. She used public transportation and the snow plow delays in turn delayed the bus schedule, which in turn delayed her arrival by three hours. Since we would be starting later that meant we would end too late for her to ride the bus home again. She contacted the personal care company to have them cab her home afterwards and they refused, since PCAs are responsible for their own transportation. I felt like they should have cabbed her given the very unique circumstances, but she had a history of asking to be cabbed outside of clearly set parameters for it so the company dug in their heels. Things got heated over the phone and the whole issue got ugly. Ultimately, she didn’t make it out to me because the roads were too bad and she didn’t have a ride home. The next day the office called her to rehash the whole situation, things got heated again, and she quit. So now I was out my evening PCA, every morning PCA, and every other weekend PCA in one fell swoop.

That night they sent a fill-in who had never done what I needed help with before, which was very frustrating. The fill-in they sent the next morning no-showed and they had to send their on-call PCA instead, making me an hour late for work. The fill-in PCA they sent the following morning wasn’t bad and I hired her permanently. But after about a month she quit citing that the two hour shift wasn’t worth her drive (from St. Paul?). She had overslept and caused me to be late for work two out of the previous three days so I was planning on cutting her loose anyway.

Meanwhile, my weekend PCA situation was in a total flux. Most of my new Monday-Friday morning PCAs had weekend conflicts so I needed to find coverage for every weekend. The aforementioned no-show was in line to be my new weekend PCA at that point, but after that fiasco I moved on. Her common sense was brutal so it would have never lasted anyway. I hired a nice girl that came in on two weekends then quit out of nowhere. I hired a new weekend PCA fairly soon after that, but between me being gone on Easter weekend and her being out of town the next weekend she didn’t start for almost a month later. In the interim I had to deal with temporary fill-ins.

In total, between my nine year PCA quitting and where things are now I worked with up to 12 different PCAs in a shade over two months. That’s a lot. That I had to repeatedly explain/train my whole routine to so many different strangers was frustrating and mentally exhausting.

Things have finally stabilized though. Over the last few weeks I’ve had the same morning PCA, evening PCA, and weekend PCA and they’re all pretty high quality folks. Knock on wood that they all stick around for a while.

Photo source: [ jeremy ]

Let’s face it, when you have a fully-functioning body it’s easy to become preoccupied with all the yummy signals you’re getting (zooming back and forth from your brain to your body). And boy do I miss those feelings (and mourn them often). It can be such an immensely satisfying “solid” feeling that we don’t get. Us paras and quads usually either try to compensate for it, or forget it altogether.

However there is one thing I love about being unplugged from my body: It helps me focus on the important things in life and not be led around by my physical sensations like a puppy. I’m constantly observing the world and I see people fall prey to their body’s needs all the time.

See, the essence of being human is being a slave to your body’s needs, if you want to survive that is. Each second of everyday your body communicates with your brain. “Do this,” “Itch that,” “Move that,” but when you have a high level of injury, it’s like all of that is put on mute (if you have chronic pain, ignore what I just said). Enter perfect head space to reflect on the whole world.

For me, this “quietness” meant I was not overloaded with physical sensations. The panging desire between your legs, that nagging feeling to get up and walk or just worrying about the next thing you’re doing (rush, rush, rush – the story of so many able-bodied people’s lives), that doesn’t occupy my head space anymore. I instead focus, observe and reflect like a ninja, 24/7.

We’re only granted so many years here. Enjoying your physical body is one thing a lot of us make sure to do, but my injury has enabled me to see past all the smoke, mirrors, physical jolts and sparks that take our minds off the important things in life. If there’s a silver lining from my paralysis, that has got to be it.

Post script: This is only the author’s opinion and does not reflect the opinion of all people with paralysis.

Have you noticed the same thing? What unexpected benefits of your disability have you found?

Photo courtesy of shannon kringen

After going through the crazy transformation of becoming a quadriplegic, 2 years post I came out of a depressive haze and met a guy in a chair who was a seemingly burgeoning tattoo artist, because within the first moment of meeting me he grabbed my arm, took out a Sharpie and wrote, “CFL.”

I asked him what in the heck that meant and he replied “Crippled for life.” A lump welled up in my throat, a rock dropped in my gut – this was not a club I wanted to belong to. Why anyone would want to somehow put a positive spin on it seemed…morbid.

We parted ways after a short lived relationship (he was cute I will admit) and a few months later, I met another guy in a wheelchair who had a similar mindset, but he expressed it in a way I liked much more. One night, after shots of vodka and watching The Crow with other rehab residents, he busted out into song singing, “Why Am I Such a Misfit,” straight from Rudolph the Red Nosed Reindeer, and holy cow did all of us roar. I loved him so much in that moment.

He explained, “Dude, all of us are misfits. We belong together,” and he was right. We all have this unwavering common bond. We know what it’s like to be considered different (and treated as such). Our clothes may fit right, but boy are a lot of people not that comfortable around us. We’re forced into misfithood whether we like it or not.

What I think is especially cool is that even though we’re not forced to set up shop on the Island of Misfit Toys, a lot of us still tend to gravitate towards others with disabilities. It feels good to embrace your misfitness. I’ve finally found that out too. I was totally against it in the beginning, but I didn’t get it. It’s not about being glad you’re a misfit, it’s being happy you have a group to belong to.

You know, every downtrodden group has a community to belong to, and ours is pretty damn good. We don’t judge, we completely understand the frailty of life and best of all, we totally won’t bail on you if you ever end up in a wheelchair or something (hardy har har).

Do you view yourself as a misfit? How do you embrace it?

Photo courtesy of djv69sd

There’s not as many replies, and the biggest thing, the overall quality has taken a fierce nose dive. Depression, 5 kids with no babysitter (why are you wasting my time?), kleptomaniacs, oh it’s been a barrel of fun lately. Why ‘o why are the Craigslist PCAs I’m finding going downhill all of a sudden?

First theory. They began charging last November for anyone posting a PCA ad in the healthcare section. It costs $25 now (it used to be free) and the ad can be left up indefinitely. But once you take it down, you’ll want to be sure about that because you can’t repost it unless you pay another $25. There are a lot less ads overall because people can’t afford to post as much anymore. Maybe people have stopped checking out Craigslist for that kind of work?

Perhaps it’s my fault. There are a lot of people who’d never go on Craigslist to look for a new PCA. They think it’s full of all the baddies the Lifetime channel warns you about. When I’ve told other wheelers, healthcare personnel even family and friends about my using Craigslist to find caregivers, many are drop-jawed horrified. “OMG What?!” was the usual reply. Meh…I’ve gotten used to it.

But maybe they’ve been right all along? With my recent rash of unsavory PCAs, all courtesy of Craigslist, it’s been making me seriously doubt my scouting methods. Perhaps a new locale is in order. So, last week I registered at Care.com, a care giving website that helps people with disabilities and PCAs find each other (parents looking for babysitters and seniors looking for caregivers can use this service too). But there’s a major problem – to reply to PCAs you need to be a member, and the minimum membership costs $37. Oof.

Luckily, I found a way to still post a PCA without paying for anything on Craigslist. Turns out – they still let users post free job ads in their “Gigs” section, and thank God they do. Not many people can afford this every time they need to find a PCA. And all you have to do is go into Gigs and post your ad in the “Domestic” sub-section. I get replies just the same as I would if the ad was in the Healthcare section, but that isn’t saying much these days.

Finding your own PCAs is certainly a double-edged sword. I love it because it gives me the freedom to be in total control of who comes into my home, but then I also have to find them – and that can be a lot of work if you have high turnover. I usually don’t have a problem with this, but starting last Summer everything changed.

First, a PCA quit after her first shift. Then I had to fire a girl who kept calling in last minute because she had no babysitter. After that, my 19-year-old PCA stole some new scented lotion. And then this year within a week of each other I lost two PCAs because they suddenly had depressive episodes and had to be admitted to the hospital. Shall I continue? Either unreliable or plain-out awful people *sigh* It’s too bad old-fashion newspaper ads don’t work like they used to anymore.

My ultimate goal: To find an amazing PCA via word of mouth. I may just go post ads at the local college campus. You never know.

How do you find your PCAs? Have you noticed a downward trend on Craigslist?

Photo courtesy of Arkansas Department of Human Services/Division of Aging and Adult Services

What do you think???

Photo credit: Harold Cunningham/Getty Images

In this episode Tiffiny and Annette discuss how she got back into dance, finding her self-esteem and her recent exciting journey into ballroom dance. She also  won 1st place last year at the American DanceWheels Foundation’s 1st Annual Wheelchair Dance Competition (at Cheryl Burke’s Mountain View studio), winning the power wheelchair division.

Annette also shares her secret for keeping her dress out of her wheels while she dances, how wheelers can regain their confidence to dance
again and more importantly, how people interested in wheelchair ballroom dance can try it out themselves.

Listen below. Run time is 55 minutes.

No Free Rides is brought to you by Easystand

Links:

- Visit American Dance Wheels Foundation

- Watch wheelchair ballroom dance videos from American Dance Wheels

Podcast 96

Using a wheelchair is one situation where it’s totally OK (unless you’re an agile wheeler) to ask for help. I now ask for help,  but it wasn’t easy at first. Growing up, I was taught by my mom to be a clean freak. Maybe it didn’t stick as well as she would’ve liked, but I learned to derive insane joy from cleaning as a kid. And then after my injury – cleaning wasn’t fun anymore. It became a struggle to do something as simple to wipe out my silverware drawer. So. not. cool.

I tried and tried my darndest to figure out “wheelchair cleaning” tips, trying to do everything solo, but with no grip and a twisted back, your tricks can only take you so far into deep cleaning territory. I do have a few cleaning tricks up my sleeves that are worth sharing.

One of my favorites is the Dust Buster. A full on vacuum is too heavy for me, but for a mere $20 a Dust Buster is just the thing. I can lean over with my crooked back and pick it up off the floor without too much of a struggle and I can hold the handle because it’s long and wide; no adaptations needed (I really would’ve loved knowing I could use a Dust Buster in rehab. It took me 10 years to figure this out).

With my Dust Buster I can suck up spilled cereal, cat food on the floor but…despite it being so great, it still has one huge limitation: You can’t do heavy cleaning with it. Getting on your knees and vacuuming crevices, wiping baseboard, and intense floor cleaning are out of the question. With unhygienic PCAs, a cat that loves to shed, not enough money for housekeepers and a disability making it nearly impossible to clean anything, I finally sucked up my pride and asked family for help.

I didn’t want to, I want to be independent, but it was necessary. And I know I’m lucky. Not everyone has a mom or a sister they can call who’ll come over, free of charge, to help them spring clean. When you’re disabled, family support can make a huge difference when it comes to quality of life; and I thank God everyday for being blessed with a family that’s there for me. But what if you don’t have family and can’t afford a housekeeper? What do these people do then?

I know a lot of Medicaid programs will pay for housekeeping services, so looking into that is the first place to start. In Minnesota for example, your PCA hours are separate from homemaker hours, which means you get separate “cleaning hours” which is great. This assures your caregivers actually clean. I also know that if you look hard, you can find some decent-priced house cleaners on Craigslist (but be careful with this). And if you ask your friends, try to sweeten the “Will you help me spring clean?” pot and offer them coupons, treats, anything to show your appreciation (in a low-cost manner).

It may be the opposite of fun and let’s face it – the biggest hassle all year next to doing your taxes – but spring cleaning simply must be done. Don’t do what I did and let it slide a year – the grime will be seriously out of control. I am now sitting in one of the most sparkly clean homes in all of Minneapolis and it feels am-aaazing. Plan it, do it, and get it done.

Do you live in a state that helps pay for homemaker services? Who helps you clean?

Photo courtesy of DaveCrosby

But that level of good eye contact slowly started to go away after my spinal cord injury. Immediately after my diving accident I was put in traction to stabilize my neck, and was equally restrained flat on my back for a few weeks after that in recovery from my neck fusion surgery, so I could only make eye contact with people if they leaned over my hospital bed and looked straight down at me. When I was in physical rehab in the hospital for the next few months I had so many medical personnel coming and going to check my vitals, take blood samples, etc. that I mostly ignored them and stared at the TV instead.

But where my former good level of eye contact really started to taper off was when I returned home from rehab and started working with home health aides in the mornings every day. When people are helping me with things like range of motion on my legs, dressing, things in the bathroom, and transfers from bed to wheelchair and vice versa I am working in very close proximity with them. As in, our faces are frequently within a few feet and even a few inches from each other off and on for a few hours at a time. Talk about extreme close ups. So when I am that close to someone that is working for me maintaining strict eye contact from that close of a distance can be very weird. It’s too intimate. Having that level of close, intimate eye contact with someone who is less than six inches from your face is only not weird when it is with loved ones or a boyfriend/girlfriend/partner, in my opinion.

That said, more often than not I found myself staring off into the distance, at the ceiling, etc. instead of in their eyes while we were talking. Accordingly, that practice started to slowly permeate into the rest of my lifestyle, and next thing I knew, I was executing poor eye contact during conversation with most people on a frequent basis. It just sort of snow balled from there over the years.

I’m still really good at looking people in the eye while they are talking to me, but when it’s my turn to talk back I find myself habitually looking either down or off in the distance. The worst part about it is that I’m always aware of it and it bothers me every time because it makes me look aloof or uninterested in the conversation. But I’ve found it to be a tough habit to break.

I find that I can turn it on when I really need to, like during job interviews or when I meet important people. But it bothers me that it doesn’t seem to come naturally to me anymore, even during conversations with people that I am close, like family members. The most effective two-way conversational eye contact that I’ve had in the over 16 years since my SCI was with my last girlfriend because she has the most gorgeous eyes that I’ve ever seen. Maintaining great eye contact with her came naturally because I could never get enough of seeing those bright, pretty eyes. Apparently, nice eyes is the game changer.

So it sounds strange to say that my SCI lifestyle has played the most significant role in taking away the good two-way eye contact that I had pre-SCI, but like many things that this lifestyle has taken away from me it’s just the truth in my case. But now that almost three years of fruitless job searching has finally lead to five legal employment opportunities over the past nine months, with reserved confidence that I will just keep getting similar work going forward; I am in settings where executing good, consistent eye contact is important. I’ve been making it my mission over the past year or so to get back to that elite level of good eye contact I once had. And with enough effort and practice I will eventually get there once again.

Photo source: *clarity*

“The heroine goes by the name of Jewel, an “urban dwelling female” who uses a hot pink crutch. She lives with her immigrant parents, along with her new husband and baby sister, and she’s known as a successful author “whose common sense is out of whack.” Seems like a formula for hilarity, and from the 44 episodes out so far (I love that they’re all free), there’s no denying this. One of my favorites is Episode 4 where she gets her nails done and gets a condescending remark from the technician about “how stylish” she is, messing up her nails in the process.

In another episode that made me go, “Dude she’s reading my mind,” is Episode 5, where Jewel is getting ready to go to a writers conference….wearing cheetah print pants. When her sister questions her look, she thinks she’s only worried about the pants clashing with her crutch.

What I think is really cool about this comic is that it’s based on someone in real life – the author of the series. That’s why it’s technically a “reality-series comic strip.” She’s putting her life in comic form and, boy is it great. The real life author is Jewel Kats – a former teen model who was a teen advice columnist for 6 years with a nat’l syndication. She’s also written 7 books with disability themes, including “Cinderella’s Magical Wheelchair,” “What Do You Use to Help Your Body?” and “Reena’s Bollywood Dream: A Story About Sexual Abuse.”

I think a lot of good can come from this series. Hopefully able-bodied people will check it out and find it funny, maybe erasing a few stereotypes. And as for us folks with disabilities, it’s good for a laugh, but it’s fun to see how others deal with similar situations. And Jewel is a riot.

Make sure to check out all the past episodes of DitzAbled Princess. They’re free, and there’s a new episode posted each week. Also, the pinnacle of making it in the comic world – the series is putting out a graphic novel next month, “DitzAbled Princess: A Comic Diary.”

DiztAbled Princess illustrations are by Katarina Andriopoulos.

- Official site: DitzAbled Princess

There’s the freebies (the free embroidered $80.00 jeans I have from the Express, randomly purchased by old man who was in line in front of me ranks as one of the most memorable). And you get to cut ahead in lines pretty much all the time. Oh and let’s face it, you can get away with being real lazy. “Oh it must be so hard to be in a wheelchair.” Yes, now pass the cheesy puffs.

All jokes aside, it’s not all sunshine and rainbows. The way a wheelchair can alter how someone views you – in a mere instant mind you – ranks as one of the ultimate injustices of the human experience. The evolutionary part of the human brain still (despite it being 2013) has a searingly difficult time overlooking disability (ie., not freaking out when they have to be around us).

Like skin color, our eyes see something that’s different, our wheelchair or any other mobility device, and unfortunately we can’t help but freak the you-know-what out, or be incredibly fake. They don’t see us on an equal plane, and it’s all about being uncomfortable. The wheelchair simply makes people really uncomfortable. Humans need to get used to something first in order to be comfortable around it, and unfortunately 98% of the population has never had firsthand experience with someone in a wheelchair. Heck, my first time knowing someone in a wheelchair was myself. This makes it hard to get angry at these folks.

But the experience of being judged completely based on your wheelchair isn’t something you could ever understand unless you’ve experienced it first-hand. It’s discrimination, but we all know this has been something that’s been happening since the beginning of the human race.

The wheelchair factor never gets old however and it never ceases to amaze me how powerful it can be in social interactions. It can change people’s minds in an instant when you’re on a dating site. Mention you’re in a wheelchair, and about 80% of the people will click to the next profile. Or if you’re on the phone with a receptionist and you mention you’re in a wheelchair, 10-1 she’ll be nicer to you and give you better service.

While the latter is because of sympathy, people aren’t bypassing your dating profile because they feel bad for you. They don’t think they could ever like someone in a wheelchair, and that’s my friends is pure unadulterated ignorance. The wheelchair factor is very much also about not knowing anything about us, and even worse, not caring. But maybe this blog post will change a few minds. Maybe.

Wheelchairs can part a sea of people, they can elicit sob stories from complete strangers (don’t I know it) and the symbolism they carry is more powerful than that mind eraser tool from Men In Black. One look at us, you see the wheelchair and you’ll never look at us the same. That’s just how it is. But don’t let the wheelchair factor get you down too much. Acknowledge it, don’t forget it, even laugh that it, but never let it ruin your day.

What frustrates you the most about the wheelchair factor?

Photo courtesy of Marshall Astor