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About Tiffiny Carlson

Tiffiny Carlson is a writer and quadriplegic from Minneapolis. She has a C6 spinal cord injury from a diving accident when she was 14 years old. Writing and breaking stereotypes is her passion. She's been the SCI Life columnist for New Mobility magazine since 2003 and is the founder of the longtime disability site, BeautyAbility.com. Her work has also been featured in Penthouse, Playgirl and Nerve.com. And when she's not writing, Tiffiny loves to cook and practice adaptive yoga.


10 Things People Don’t Understand About People With Disabilities

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If you don’t know someone with a disability, chances are you have a few misconceptions about us.

The thing is no one can expect you to read our minds, but if you’re out there right now and are interested in expanding your world view, check out a few things people tend to get wrong about us (or rather don’t fully understand). By the end of his post, consider yourself enlightened.

1) We know when you’re staring.

A lot of able-bodied people like to think we’re a bit slow mentally, often thinking our intellectual abilities aren’t up to par. These are the same people that like to stare at us thinking we’re some creature on display and too dense to realize we’re being stared at. But the joke is on them. Not only do we know you’re staring at us, you’re looking like a total jerk in the process.

2) We’re not depressed because we’re disabled.

A lot of people like to imagine we’re deeply depressed because of our disability. The limitations, the social stigma, the missed opportunities. Yes all that is bad and we know that most people can’t imagine living in the bodies that we live in, but don’t think we’re living in a deep darkness of despair. We are strong individuals and relish life. We’re not looking jealously at people walking by, we’re busy living our lives.

3) Where do we get our strength? Same place as you.

So many able-bodied people wonder in disbelief how we are as strong as we are, putting us on a pedestal and looking at us like we’re aliens. “Where does it come from,” they wonder. “They must’ve been blessed by God to be so strong.” But I’ll let you in on a little secret — we get our strength from the same place that’s in all of us. We can all be peerlessly strong in the face of permanent disability, even you.

4) Our disabilities can suck our energy.

While we fervently want to be treated like everybody else, for many of us, our disabilities make us move a bit slower. It’s something that can’t be avoided. We need to get smart about rationing our energy and getting better at asking people for help. If you think we’re just being lazy, think again. When you’re moving with compromised mobility, you burn more calories and tire easily.

5) We zoom because it’s cathartic.

“Slow down speed demon” or something to that effect is a phrase I get often. What can I say, it’s fun to go fast in my power wheelchair. When I do I feel more free and less disabled. But don’t get me wrong, I know it can freak able-bodied people as I zoom by (especially when I catch them off guard).

6) We deal because we have no other choice.

Another thing people often wonder is how we’re able to accept our disability. “I could never do it,” they think and admire us like we’re some untouchable saint. The only reason we’re able to accept our disability is because we have no other choice, kind of like how you had to accept that grandma or grandpa died. It’s just a fact of life that you must swallow and move on from.

7) We’re stronger than we look.

I often get remarks from new caregivers who are surprised by how strong my arms are, thinking that they must be very weak. A lot of able-bodied people like to assume people with disabilities are physically less strong, but this couldn’t be further from the truth.  Many of us have a lot of strength in our bodies, coordinating that strength is where the problem comes in.

8) We are not obsessed with getting better.

We’re also not obsessed with becoming cured or busy praying to God on a daily basis for a spontaneous miracle.  A few of us may be doing this, but as a whole this is a huge stereotype.  Most of us just want to move on and enjoy what time we have left on this earth. We too realize how short life can be, probably even more than the average person.

9) We’re highly observant.

Since physically moving is difficult for many of us, we spend many hours sitting in our wheelchairs using our minds instead. One thing people don’t realize is that we’re highly observant, watching everything going on in the room and even tuning into the emotions of the individuals in said room, seeing things most people don’t notice.

10) We’re just like you.

Despite all our differences, at the end of the day we’re more like you then you realize. Sure our lives are vastly different, you can walk and we can’t. You have a family and kids, a lot of friends and many of us are single with only a few friends. But at the end of the day, we are all still human–the common bond that makes us so similar.

It’s nearly impossible to fully understand someone else’s point of view in this world, but this list can help. Our disabilities do not make us as different as the world would like to think. They only make us more strong, more observant and more realistic people.

What does the world got wrong about you as someone with a disability?

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10 Absolute Truths Of Life In A Wheelchair

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There are certain inarguable truths in life. Everyday the sun rises, everyday the sun sets, dogs will run into the road and In the life of a wheelchair-user, there are a handful of inexplicable truths we experience too.

Some of them are amusing. Most are critical to our long-term survival. But one thing is for sure, we all eventually experience them. What wheelchair truths do you live by? Check out my top 10 below.

1)  You will have difficult days.

While many of us put on a happy front, behind closed doors we are all prone to those dark, desolate moments where we can’t believe we use a wheelchair. These moments will hit you at weird times too and can be overpowering, like deja vu. The important thing to remember is that it’s normal when they do happen. You don’t need to run away from them either. They are profound learning experiences and can be overcome. Always remember tomorrow will be better.

2) If  you fly, your wheelchair will (eventually) get damaged.

Airline luggage handlers are infamous for their unsavory handling of luggage, and this unfortunately has crossed over into the wheelchair world. With wheelchairs costing $5,000 and up, having your wheelchair damaged while flying is no small matter, but it will happen, mark my words. Most wheelchair-users reports their wheelchair damaged about every other time they fly.

To prevent this, cover your wheelchair in a black plastic tarp and tape a sign on it that reads, “Fragile. Handle with care.” This will at the very least alert the luggage handlers to your wheelchair and hopefully prompt them to be careful with it.

3) Comfy seating is worth more than gold.

When you’re sitting all day, what you’re sitting on and leaning against are important.  Your seat and backrest are without question the most important furniture you own. You may not look at it that way, but it really is.  As you sit, the pressure you exert on your seat and backrest can directly influence your muscles and bones, causing pain by the end of the day.

I recommend getting custom seating (available at most a rehab hospitals), but companies such as Roho and Jay that make standard seating for wheelchairs are also highly recommended by many wheelchair-users.

4) People will be uncomfortable around you.

Maybe it’ll be your coworkers, your boyfriend’s siblings, or maybe it’ll be a friend of a friend, whoever it is, don’t take it personally. I know that’s easy to say, but not everyone will be uncomfortable around you and they will be high in number too. Ignorance is nothing you want in a friend.

5) Your wheelchair will break at the most inopportune time.

Whether it’s on the weekend, a holiday or on vacation, your wheelchair will break during one of these moments. It can be incredibly hard not to let a broken wheelchair ruin your day since after all it is your legs, but if you can master it, you’re on your way to becoming one of the most patient people in the world.

And don’t forget – always have your wheelchair repair shop’s number in your phone.

6) Suddenly, your wheelchair will seem ridiculously dirty.

Maybe this is just me, but every couple of months or so I will get a good look at my wheelchair and realize it’s disgustingly dirty. “How in the world can it get so dirty and so quick?” I always chalk it up to life being dirtier than expected. This is true, but I swear all wheelchairs have some kind of built-in dirt attracting mechanism in them.

To avoid this sudden feeling of disgust, make a point to wipe off your chair with cleaner every other day and more if the weather outside is crazy.

7) Always have a backup manual wheelchair.

Kind of like an emergency kit in your car, having a backup manual wheelchair is paramount if you use a wheelchair. You don’t want to be stuck without any mode of transportation if your wheelchair breaks. That’s like having your legs tied underneath you as an able-bodied person. Completely unacceptable. You don’t have to spend a ton of money on your backup chair either. In fact, you may be able to score a used manual wheelchair on eBay or Craigslist.

8) Get your cardio.

When you use a wheelchair, you’re prone to a lifestyle that doesn’t have high levels of cardio. If you use a manual wheelchair, forget what I just said, but it you use a powerchair, keep on reading. You need to make sure you get your cardio anyway you can. Your heart deserves to be healthy too. Whether it’s using an armbike, wheelchair aerobics, Zumba or wheelchair boxing, there are several ways to get your cardio.

Trying doing any kind of cardio three times a week in 30 to 45 minute intervals to keep your heart at optimum health.

9) Preserve your joints.

When you rely on your upper-body for most things, those joints up top – I’m talking about your shoulders, elbows, wrists and even your neck – are all prone to being overused, and when they become this way, you’re never getting them back. The best thing you can do is to use your joints in moderation if at all possible.

At the very least, give your arms TLC – massage, hot packs, a hot soak in a tub – on a weekly basis.

10) Stretch and stretch often.

When you sit all day, there’s one thing that will happen no matter who you are, and that is muscle tightness from the lack of movement. Even if you can’t feel the tight muscles, they’re there. Having any kind of tight muscle can throw you off your game, from your balance to your arm strength, which is why stretching every morning and night is a must.

Create your own kind of daily stretching regimen. If you have a caregiver, it’s a bit easier to do this, but even if you don’t have a caregiver, don’t think that means you shouldn’t reach out for help. From a family member to a significant other, ask whomever you’re closest to help stretch your legs, stomach and back periodically.

So there you have it, my top wheelchair truths. In a way, it would’ve been nice to have had a life without disability. It certainly would’ve been easier, mentally, socially and physically, but I don’t believe life is all about being easy. Life is about being strong when tested and most wheelchair-users have this in spades.

Which wheelchair truths did we miss?

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10 Amazing Products For Parents With Disabilities

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The joy of parenting goes deep, but when you have a disability you have a lot more to think about so you can be the best parent possible.

While a lot of adapted products for parents with disabilities are made by occupational therapists, there are several you can purchase at big box stores. If you’re a parent with a disability who wants to make sure they have all the best products at their disposal, check out the list below.

 

1) Chest Harness Baby Carrier

A fabulous product for parents with disabilities is a chest harness baby carrier and the best part is that these are available at almost every baby store. The reason they’re so ideal for parents with disabilities is that they allow the parent to have full use of both arms while still essentially carrying the baby. Quadriplegics especially like this because of their limited arm movement.

Check out a baby carrier from Boba

2) Side-Opening Crib

Reaching down into a crib isn’t the easiest in a wheelchair, which is why side-opening cribs are essential if you use a wheelchair. They unfortunately however aren’t something you can just go out and buy. It is however not too difficult to make a crib accessible.

Here’s a great example of an accessible crib

3) DIY Accessible Baby Bathtub

Bathing an infant when you use a wheelchair is also immeasurably tricky.  Many parents opt to bathe their infants in a sink they can roll under, but if you have the skills you can make an accessible baby bath tub using a Fischer Price baby bath tub, a computer table and a dishwasher hose. It sounds a bit tricky, but it’s rather easy, and the best part is when it’s completed, no more lifting is required to bathe your baby.

See how it’s done from Disabled Parents

4) Cursum Accessible Stroller

Designed by Cindy Sjoblom a designer from Sweden, the Cursum is the best stroller ever invented for wheelchair-users. What this stroller does is snap to the wheelchair, allowing the parent to push and still propel the stroller. It’s quite a novel idea, unfortunately it’s still a concept design, however if you know someone who is handy, this very well be made at home.

Check out a video of the Cursum stroller

5) Velcro Baby Bibs

Another great product for parents with disabilities are velcro bibs.  Attaching itself using velcro versus a snap takes the need of finger function out of the equation, and when you have a hungry baby, the last thing you want to do is  struggle while putting on a bib. They’re easy to find at most baby stores, however they wouldn’t be too difficult to make yourself.

Check them out: NUBY Velcro Bibs

6) Breastfeeding Sling

If you’re breastfeeding, holding your baby the entire time can be difficult if you have a disability, which is why the latest trend in baby gear – breastfeeding slings – are just the thing for parents with disabilities. They evenly distribute the baby’s weight and have a padded shoulder strap, making it blissfully easy to breastfeed your baby for as long as needed.

Check out a breastfeeding sling from Baloba Baby Dr.

7) Boppy Baby Chair

Think of this product as your go-to baby chair that can replace all of your other baby chairs.  It’s also lightweight and can fit on your lap if you use a wheelchair, making it great if you have limited arm movement but still want to interact with your newborn.

Check it out: Boppy Baby Chair

8) Boppy Two-Sided Nursing Pillow

Another great product for breastfeeding that works for mothers with disabilities is the Boppy Two-Sided Nursing Pillow. This firm yet soft pillow sits on your lap and raises the baby up to your breast so you don’t have to hold your baby fully. It also creates a stable platform and the cover is washable.

Check it out: Boppy Two-Sided Nursing Pillow

9) Wriggle Wrapper

Another product if you have upper-body mobility issues is the Wriggle Wrapper, a highly versatile security belt that can be used anywhere, but especially on chairs to help hold your baby in. These are great if you’re out and no high chairs are available.  And even better, they adhere using Velcro, making them easy to use. An all over great safety product, the Wriggle Wrapper is indispensable.

Check it out: Wriggle Wrapper

10) Swivel Base Baby Car Seat

Toting your baby around in your accessible car can be tricky as a wheelchair-user.  If you have a car, getting at the car seat can be very hard from a seated position, that is why a swivel base car seat is a must if you use a wheelchair.  This allows you to swivel the car seat so it’s facing you and not to the rear or forward-facing (whichever style you’re using at the moment dependent on your baby’s age), so you can remove the baby on your own.

Check out a swivel base car seat: Orbit Baby G3 Toddler Car Seat

If it you’re still in need of an adapted baby product but can’t find it anywhere, check out the people over at Through the Looking Glass, a great organization dedicated to parents with disabilities. They work with parents on an individual basis, helping them figure out what they can do to make them as independent as possible as parents.

What adapted products you recommend for parents with disabilities?

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6 Things Caregivers Of People With Disabilities Should Never Forget

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Without my caregivers, my day-to-day world would not exist. They’re my guardian angels. They swoop in day and night to help. And boy do they work hard. From lifting my 118 pound dead-weight bum up into my bed after a shower (slippery skin and all) to moving heavy furniture around and cleaning up cat puke for the thousandth time, this job is not easy.

This is why caregivers need to arm themselves with as much knowledge as possible. Knowledge to make sure they’re able to do their job as long as they would like, without pain and emotional stress. Here’s my advice to the caregivers of the world on how to be happy in your job indefinitely.

1) Don’t burn yourself out.

One of the biggest no-no’s caregivers do is take on too many clients, or simply take on too many hours. It sounds great so I can see why they do it – woo a ton of extra money coming in – but it usually ends up burning you out, leaving you feeling like you don’t even want to work at all (and I’ve seen many walk away from the field).

If you’re proactive in making sure you have plenty of work however and don’t overdo it, you can rest-assured you’ll be a happy caregiver for a very long time. Always make sure you schedule “me time” everyday too, whether it’s tea and reading your favorite book or catching up on your favorite  TV show.

2) You can’t do it all.

This rule is an important one. For a lot of caregivers, many think working double shifts isn’t going to affect them. Again, the money is very enticing, so many give it a try. But doing doubles on a regular basis will start to wear on you. Instead, having a break to look forward to is huge. This means no double shifts unless absolutely necessary. Mentally, it’ll keep you in the caregiver game much longer too, giving you proper rest.

3) It takes time to learn a routine.

Another thing to keep in mind is that it takes awhile to learn someone else’s routine. For all my new caregivers, I always let them know I don’t expect them to remember everything right away and that it takes at least 6 – 10 shifts to get the hang of it. They love it when I tell them this, too, since many start out feeling nervous and want to be perfect. Be easy on yourself, I always tell them. New routines take awhile to learn.

4) Make a list (and check it twice).

For clients that require a lot of care, or just have a routine with a lot of steps involved, making a list of what needs to be taken care of each shift is a fabulous tool to help you remember. As the client, I always make my own list for my caregivers – what needs to be done that day, food to prep, appoints to visit, etc – but not every client is as OCD as me. If you’re worried you may forget an important step, just make a list.

5) Backup is essential.

As a caregiver, you always want to make sure you have other caregivers to call (hired by the agency or your client) in case of an emergency. This really helps with stress-levels that can sometimes get the best of you in this job. Knowing you have someone you can call in a pinch is priceless. Ask your client for the numbers of their other caregivers so you can call them in a pinch.

6) Treat your back (and body) with TLC.

Above all things, always make sure you’re vigilant about your back’s long-term health. As a caregiver, you’re going to be doing a lot of heavy lifting even if your client has a Hoyer lift. It just comes with the territory. And this is why you have to be careful – you’re only born with one back so make sure you treat it right. Lifting with your legs is probably one of the best things you can do long-term, as well as keeping weight close to you as you lift.

By 2020, caregiving is on pace to be one of the most in-demand jobs in the country, with the need of caregivers projected to double. This means you’ll never have to worry about job security again. Pretty swell deal.

If you do plan on staying in the caregiving world for a long-time, just remember that being vigilant about your physical and mental health is key. If you can stick to that, a very happy job future awaits.

What advice do you have for new caregivers?

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CrossFit Community Raises An Amazing $354k For Paralyzed Competitor Kevin Ogar

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Last month, Kevin Ogar of Englewod, Colo. was like any other serious CrossFit competitor — insanely strong, a huge fan of the CrossFit community and ready to win money at the CrossFit games.

But during a lift known as the “snatch” while at the OC Throwdown CrossFit competition in Costa Mesa, Calif. last month, Kevin dropped the 240-pound barbell after getting it up over his head.

The weight then did something crazy — it bounced off the floor behind him, hit a stack of nearby weights, which flew and hit his back, severing his spinal cord at the T11 level. Watch the video below). Kevin is currently undergoing rehab at Craig Hospital near his hometown.

CrossFit has long been known for its intense strength and conditioning, and lifts like the snatch are common. Participants do everything from heavy olympic lifting to conditioning moves like rope climbs, kettle-bell swings and pull-ups. It’s definitely not a program for the timid. Kevin just had bad luck.

Unfortunately, Kevin had no insurance at the time of his injury. He was a part-time CrossFit instructor in Denver, Colorado and a part-time cashier at Whole Foods. The CrossFit community however has lit up like wildfire after hearing Kevin’s story, which went viral and a monumental fundraising campaign began days after his injury.

Related: Rachelle Friedman ‘Quadriplegic Bride’ Receives Generous Gift From CrossFit Owner (Video)

With a hefty goal of $500,000, the CrossFit community has helped raise an unbelievable $354,029 since launching their fundraising effort after his January 11th injury. With the fundraising site aptly titled OGAR Strong, anyone interested in helping out can do so here.

Hundreds of CrossFit gyms across the world are to thank for raising this money for Kevin’s hospital and post-injury expenses. Money that will be sorely needed for everything from bills to medical equipment, supplies, adapting his vehicle and home.

The amazing way the CrossFit community has come to Kevin’s aid makes sense to Toby Jurging,  CrossFit coach and owner of SPC Strength & Conditioning in Kent, Ohio. “The camaraderie of training with someone that is pushing just like you are builds a bond,” he says. “And that bond is universal.” “Hate to say it, but its like they have all spent time in the trenches together.”

It’s rare to see such an outcropping of support from any community as well, let alone one dedicated to working out. “When Kevin was injured,” explains Jurging, “the community could relate to the movement, the drive, the sacrifice.”

As for Kevin’s journey, it’s a tough road ahead. His spinal cord was torn at the T11 level with doctors grim about his recovery chances, but he will still have torso control and full upper body movement. If he doesn’t regain use of his legs, he’ll still be able to live independently.

Kevin might also want to get in touch with Chris Stoutenberg when he’s ready; one of the best wheelchair CrossFit athletes on the planet. Hailing from Ontario, Canada, Chris is one of the first people to compete as a wheelchair-user side-by-side with able-bodied athletes.

Donate to the fund for Kevin Ogar: OGAR Strong

Why do you love being a part of the CrossFit community?

 

 

 

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