All posts by 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, Her work has also been featured in Penthouse, Playgirl and And when she's not writing, Tiffiny loves to cook and practice adaptive yoga.

The Very Non-Traditional Roll-In Shower

Accessible showers; love them or hate him they are a fact of life if you can’t walk, but the good news – there are a lot of accessible showers to choose from. They vary on your mobility level, so you only have to install what you absolutely need. You can feel at our site the excitement of the game.

All some people need is a simple shower bench (lucky ducks), and then you have the folks like me who need a roll-in shower AND a special “waterproof wheelchair” (aka shower chairs). Who knew taking a shower could be so complicated? When I moved, I was without a shower for over one month. Oh what a wait (thank god from my interim bathtub).

Making the bathroom in my new place accessible shower-wise was a journey. Firstly, we decided to go the unique, lesser-taken route in the accessible shower world. Instead of doing a typical tiled roll-in shower, which can take weeks (and can cost a lot more), we installed a Corian custom roll-in shower from Innovative Solutions, a small company in Hastings, Minnesota.

While this company isn’t known for making accessible showers (their main source of business is custom kitchen counter tops), they will create and install an accessible shower stall to fit any dimensions, which my dad (who’s a plumber) knew from word of mouth; really beautiful stuff that costs less than $3000, and we needed some lesser requested dimensions as well.

Instead of the typical long and roomy roll-in shower, we went the less expensive route and decided to make the shower stall that was already in my bathroom accessible. This meant cutting out the floor, the walls, getting measurements and installing big pieces of Corian and a matching ramp. They also made sure the entire bottom of the shower was sloped towards the drain.

All in all, it’s a pretty brilliant setup. I would totally recommend this to other wheelers. There’s one thing to keep in mind however – my version can get pretty wet despite this special drain. Let’s just say I’ve become an expert at towel placement outside of the shower stall.

When you use a roll-in shower/shower chair combo to shower, you can usually guarantee the bathroom floor will always get soaked, but if you ask me a wet floor is a small price to pay for the blissfulness, not to mention cleanliness, a shower can bring.

It may not be as roomy as the shower in my old place, but I don’t mind. I have one and that’s all that matters. Nearly nothing can beat my 15 minute hot shower neck soaks. Roomy or tiny shower, it’s pure heaven.

What unique ways have you made a shower accessible?

Products Mentioned

­Innovative Surfaces

Photo courtesy of Flickr CC

Finally – I’m Getting the Hang of Being Disappointed

disappointedI never liked those motivational posters at the mall. You know what I’m talking about; the posters that say things like, “It’s about the journey, not the destination” or “It always seems impossible until it is done.” They’re “supposed” to be uplifting, but I’ve only found these quotes about par with annoyingly happy people in the morning.

And that’s the thing when you have a spinal cord injury. Everybody likes to throw these quotes at you, and I’m pretty sure it’s because they don’t know what else to say or do. Hey I get it – our situations are pretty heavy and it’s hard to know what to say – but cheesy quotes just don’t cut it.

There are so many terribly sad things we must go through – grieving our lost abilities, figuring out where we go next and many of us also lose our significant others (around 80% of relationships and marriage if the spinal cord injury happens to one of the counterparts of the relationship). Traveling, doing the things we love, driving, even interacting with people, everything is utterly and completely different now.

And the thing is, you can’t get around it. There’s no way to avoid most of these sad things from happening to you if you sustain a spinal cord injury.  But the good news is that there is a light at the end of the tunnel, and happiness will return to your line if you find strength and deal with the beginning months well.

Within a year of my first injury, so many disappointments occurred. School was definitely not the same; I could no longer could play my play my beloved clarinet, and I was no longer on the cheerleading squad.  I waited years for my ninth grade year to start, and when it finally did, I was in a wheelchair. Not exactly what I envision.

And that’s the thing about having a spinal cord injury. You need to get used to disappointment.  I didn’t go to prom because no one wanted to go with me, and don’t even get me started on the friend’s portion of things.  It was not good either.

It’s not easy in those first few months, but within a year you’ll finally be getting the hang of things. Also start thinking creatively about how you’re going to mentally deal with the situation; namely about how all the things you’re going to miss out all of the time. I like to focus on what I can do.

Also when I get disappointed about things I missing out on, I just remind myself how lucky I am to still be here; alive and kicking and trying to change the world. Earth may be a messy, and sometimes very hard place we live, but when the feeling of being satisfied comes, it’s one of the best feelings you can get when you have a spinal cord injury.

Have you tried to change anything regarding the status quo and disabilities since your injury?

Photo courtesy of Travel Yaari

8 Tips for Navigating Crowds in a Wheelchair

3897254007_4f94b02d4dAh yes the beloved, you may have even heard of it, Minnesota State Fair. It’s one of the biggest state fairs in the country. I went this past Saturday; the day it hit an attendance record of 250,000. That’s a whole lot of people, and it included hundreds of wheelchair-users.

I have been navigating crowds from a wheelchair for over 20 years now, but this crowd on Saturday was one of the worst ones I’ve ever encountered. Good thing my driving skills are awesome when inundated with a sea of never-ending butts and pork-chop fumes.

If you plan on tackling any kind of crowd in a wheelchair, check out my tips below. There are only a few things you absolutely need to know, and I got you covered.

8. No alcohol

Before you do anything, lay off the booze if at all possible. Getting through a giant crowd is no small feat. You need to be sober to get through cleanly (patience is huge too). There’s really nothing worse than a drunk person in a wheelchair driving willy-nilly in a crowd anyways. You’ll hit someone’s toes, feet or even worse, not to mention giving all wheelchair-users a bad rep.

7. Stay on the perimeter

If at all possible, keep your wheelchair on the edges of the crowd when trying to get through it. If you get right in the middle of the crowd when you’re using a wheelchair, it’s easy to get stuck, severely delaying you much more than you intended. Simply always stay on the edges, and you’ll be good to go in an emergency.

6. Slow it down…a lot

This tip is mainly for powerchair-users, but turning down your speed is a big deal when navigating through crowds. Our powerchairs can go a lot faster and be jumpier than we realize, making them more dangerous in crowds. So turn down that dial and enjoy the ride.

5. Never assume you’re always seen

A fateful mistake is assuming the people directly around you are all fully aware of you. Chances are, only 50% of the people in the crowd will notice you’re next to them. This is basically the same advice you first get when learning how to drive a car, and it really helps. Always be on the lookout for someone stepping backwards onto you too, and falling on your lap.

4. Politeness helps in a huge way

Minding your manners can make all the difference in a crowd when you use a wheelchair.  A simple “Excuse me” or “So sorry” can make a crowd part.

3. Know when to quit (and get help)

If the crowd gets to be too much, for example if you’d been stuck in one place for a bit, it’s always a good idea to have your phone on you so you can call for help. There have been instances where wheelchair-users get trampled in crowds. Always have your phone on you, and know your limits.

2. Look for gaps

A practical tip for navigating through crowds is looking for gaps among the crowd. People with strollers are the best, as they tend to stretch out the gaps, creating a path as they walk through it. If there are no strollers around, look for people on bicycles. Any kind of wider gap is your ticket to freedom.

1. Master the lower extremity “tap”

Above all, the best thing you can do to get through a crowd in a wheelchair is mastering the ‘lower extremity tap,” which is a quick and easy way to let someone in front of you know that they need to get out of your way. You don’t have to shove them of course. A gentle tap is usually all that’s required. When you do, 10-1 they’ll look down, see you and quickly get out of your way.

Whatever you do however, promise you will never let a crowd stop you from doing what you love. Crowds, in spite of it all, can be totally worth it, especially if live music and food-on-a-stick is involved.

How do you get through crowds in a wheelchair?

Photo courtesy of Flickr CC

Don’t Fall Out of Your Wheelchair Like Me

It wasn’t a pretty site. I was lying there flat on the floor, legs crazily splayed, as I waited for 2 hours yelling for help. Two hours before I was attempting to shut my patio door when it was too stiff and I lost my balance, slumping forward and falling slow-motion out of my wheelchair.

It was incredibly scary as you can imagine, mainly because I was alone. It’s funny how everything goes in slow-motion when you fall. My PCA had just left for the day and no one was coming again for 10 hours. And the worst of it: My cell phone was still in my wheelchair side pocket, far from me, and there was no way I could get to it. Boy was I angry at myself. I even had an emergency call button that I should have been wearing, but wasn’t.

If I was a paraplegic, or even a more low-level quadriplegic, I would’ve been able to sit myself up from the floor and reach around my chair to get to my phone and call for help, but I couldn’t even sit myself up. And it’s not for lack of trying either. Since I can’t move my torso muscles, my entire body felt like a pile of bricks.

There I laid, flat on my back, trying desperately to figure out a way to sit myself up by positioning my hand on various spots on the floor and on the wheelchair next to me, all while yelling for help every 30 seconds. But it wasn’t working. My building has thick concrete walls and it was 12:30pm on a weekday. No one was home. My ultimate fear was that no one would hear me for hours.

But by the grace of a higher power, a miracle happened. My middle-aged next door neighbors were home for the day. Apparently, they don’t work very often and were taking a pool day, which was why they heard me yelling for help. Finally after 2 hours of yelling, there was suddenly a knock on my door asking if everything was ok.

I yelled, “No it’s not. Please PLEASE come in. I fell on the floor.” Thankfully my door was still open (I hadn’t gotten around to locking it yet), and they let themselves in to rescue me. Never before in my life was I happier to have strangers see me in an embarrassing situation. The wood floor that I had been lying on was a living hell. My boney tailbone was slowly getting injured the longer I laid there.

This crazy situation happened about a month ago. After they came in, they started apologizing and I said, “Why are you saying that? You’re rescuing me. I should be the one who’s doing the thanking.” And that is when they told me they had heard me yelling earlier, but hesitated because I was yelling “Can anyone hear me?” “We thought you were maybe on the phone,” they said, “otherwise we would’ve come earlier.”

But I told them it was silly to feel that way. I was ecstatic they were rescuing me in the first place. Fortunately, I was wearing a pair of shorts underneath my dress so they couldn’t see anything unsavory, and they did a two-person lift, picking me up from the floor and putting back in my wheelchair. It felt so good to be back in that thing.

It’s funny how you look at your wheelchair as an object that holds you back, but when you fall out of it your mindset completely changes. You finally realize what a miracle tool it is, helping us be independent when we could never be otherwise. I love my wheelchair even though she failed me that day.

I now too always make sure to keep my emergency call button necklace on when I’m alone, and I bought a very cool cotton belt called FitBelt to keep my phone in it at all times so if I do fall, my phone will at least be on me.

My only wish: My button would work outside of my home, but I have yet to upgrade to that. And also wearing my seatbelt now too. You can just never be too safe. I refuse to ever get myself into such a terrible situation again.

Have you fell out of your wheelchair before? How did it go?

Products Mentioned

Lifeline Medical Alert Button


Photo courtesy of Flickr CC

How to Fall Asleep When You’re an Insomniac Quadriplegic

nosleepEver since I can remember, I’ve never been able to sleep very well. My earliest memories of jealousy were at slumber parties, envying my friends for being able to fall asleep so quickly. “Why couldn’t I be like them? What was wrong with me?” was all I could think.

After becoming paralyzed at age 14 from the chest down, with only partial arm movement and no trunk control or balance, sleeping only became that much harder. It was much more difficult to get comfortable, especially after my caregivers left for the night. Adjusting a pillow or blanket was now a ridiculous, monumental task.

And it wasn’t just that. The heightened sensation of my upper body, namely my shoulders and clavicles, also made it harder to fall asleep. Everything now had to be absolutely perfect up top where I could still feel. My hair had to be up, my pillow needed to be pulled down low behind my neck for support (because of my neck fusion/plate) and I could never wear pajamas; too tactile-y.

This is no exaggeration, but I probably spend at least 15 to 30 minutes every night trying to get my upper body as comfortable as possible so that I can fall asleep. And after getting my pillow and blankets situated, I need to get my room ready for sleep. This means a block-out shade so no light whatsoever filters in, as well as a continuously running fan for white noise.

After all this I need to take my meds, which now help me fall asleep. Baclofen, Oxybutynin, these are all drugs that prevent spasms, yet also make you very sleepy. There weren’t prescribed for sleep. My body however is hooked on the the sleepy, drowsy effect of these drugs for getting to sleep each night.

I also can’t forget two more things – actual objects – I need so that I can fall asleep: My silky purple eye mask and my Mack’s Aqua Block earplugs. These items are true godsends, getting rid of any noise and light I couldn’t otherwise.

First, in order to put on the eyemask, I cut off the head strap (it gives me a headache) and I just place it over my eyes when I lay down (luckily I sleep on my back). And I purchased long-as-I-could-find ear plugs so I could get them in/out of my ears on my own. I’ve found Mack’s Aqua Block earplugs to be the best for this so far. My entire sleeping ability improved by at least 40% because of these earplugs.

The silver-lining about my insomnia is that I’m not the only one with paralysis who’s this way, and I suppose there’s some comfort in knowing that. These days, it takes me around 15 minutes to crash once everything is in place, and that’s about average for quads.

And on those nights when sleep still eludes me, no matter, I figure I can catch up on my sleep when I’m dead, and that’s totally alright with me. Viva la vida life, SCI amigos.

How do you fall asleep when you can’t?

Products Mentioned

– IKEA TUPPLUR Block-Out Blinds

100% Silk Purple Eyemask

Mack’s Aqua Block Earplugs

Back to Bath: Taking a Bath Again After 8 Years

bathSomething amazing happened the other day – I took a bath after a 8 year hiatus.  This is a big deal when you’re paralyzed and so many things you used to love are no longer possible. And tubbing only possible because I recently moved and live in a place that has a jetted bathtub. Taking a bath was like walking again; almost.

What it feels like truly is that I’m reclaiming who I used to  be. I am without question a bath person, definitely not a roll-in shower person, so now that I’m back in a bath tub, all seems right with the world.  If only I could do this with everything else in my life, like walking.

The bath itself however was beyond divine even if my balance is truly horrible and being in the bathtub feels nothing like it used to be before my injury. The hot water, the jets and bubbles, they’re oh so good.

I did however anticipate that my balance would be an issue, so I found a local medical supply company that rents bath lifts.  I was going to buy one at first, and then I got smart realizing I may not like the lift. So I found this bath lift to rent – the Rio Invacare Bath Lift – and so far so good.

The remote itself is completely waterproof and the seat goes all the way to the bottom of the tub, lowering with a touch of the button The seat is great for helping me with balance.  It can be a bit tricky though getting into this lift.

After transferring me into my shower chair, my caregiver will park me alongside the bathtub, pivot transfer me down to the side of the tub, and then transfer over into the chair itself. A lot more steps, but the safety is more than worth it.

My only complaint is that the chair does not stay suctioned to the bottom of the tub as it’s designed to do, and lifts up when transferring out of it.  While it’s a good thing I’m not overweight, this kind of thing can get you dropped on the floor real quick.

Always make sure you have towels nearby, just in case, and make sure to stock up on a slough of tasty bath bombs.

How do you take a bath despite not being able to stand-up?

Products Mentioned

Rio Bath Lift from Home Access Products

Bath bombs from Lush

The Self-Makeover

For the last 3 1/2 years, up until last week, I have been desperately wanting to overhaul my look. My hair color, my clothes, I let it all fall to the wayside, not caring anymore. This is what you do when you get into a very comfortable relationship when your significant other who eschews beauty products.

And while I won’t lie – it felt quite liberating to be this way- at the end of the day it was a very bad thing. Now that I’m single again, I’ve realized just how far I have let things slide, and I deeply regret it. But enough about the past. You can’t go back. All I can do is change the now and the future, which is exactly what I did last week.

When I decided to make a change, it all kind of happened at once. I got my teeth whitened on Tuesday, a spray tan on Wednesday, Thursday I went to the mall and bought several new clothes and Friday I made the penultimate change – I dyed my hair back to my bright blonde; the crowning glory of my makeover. Oh and there was a eyebrow wax somewhere in there.

After everything was said and done, I felt like a million trillion dollars. Truly. It was almost as good as a massage or even young puppy love; that’s how transformative a makeover can have on my psyche. I hate to admit it since I tried to ignore this fact for the last few years, bur new hair and clothes can really be incredibly healing for people with disabilities.

Of course the task after you do all of the primping is to put yourself out in public to see what kind of responses you get; to see if you really have an amped up sex appeal. My ultimate test was a second date. It was our official “real” date since our first meeting was just a coffee thing, and I wanted to look good.

So I wore my new leopard dress; tight, very very cute, and I spent an hour on my makeup. I also made sure to put a smidge of perfume in my hair, finished my hair and bam – I was ready to go. And when he first saw me, I could feel his eyes on me, and they stayed there the rest of the night. I knew all my hardwork paid off.

You know, part of me still wishes physicality doesn’t matter, but it does. As Madonna likes to say – we are living in a material world – and it always good to remember it.

Have you given yourself a spur of the moment makeover with success?


7 Accessible Hostels in Unexpected Places

pigeon-point-lighthouse-hostelIf you’re the kind of traveler that likes to save money whenever possible who also doesn’t mind forgoing a bit of privacy – maybe you even love making new friends – then a hostel may be right up your alley, even as a wheelchair-user.

The good news is that thousands of accessible hostels exist all around the world. While it’s great so many are out there, not all of them are something to write home about. Many are barely accessible and are in some pretty blah locations.

There are however some amazing wheelchair accessible hostels located in an outstanding locations. These hostels give you the best of both worlds – frugality and accessibility to a great location – so you can visit where you want without fear of going broke by the end of your trip. Now that’s my kind of vacation.

Read on seven accessible hostels found in some of the most unexpected locations in the world.

7. Pigeon Point Lighthouse Hostel – Pigeon Point, Northern California

For a environmentally-friendly hostel located off the beaten path in California, is the Pigeon Point Lighthouse Hostel in Northern California, a hostel perched off the cliffs of the Pacific Ocean in the tiny town of Pigeon Point.

What’s fabulous about this hostel, other than the fact that it’s wheelchair accessible, is that it’s located in one of the most beautiful places in the world – at the base of the historic Pigeon Point Lighthouse that’s been around since 1872. The hostel is comprised of 4 separate bungalows, each with its own common rooms, and there are 3 self-serve fully-equipped kitchens.

It also has one accessible bungalow; a 3-bedroom bungalow called The Dolphin. This facility includes a fully equipped kitchen and a huge accessible bathroom, enough for a 360 degree spin, and a roll-in shower. Other bonus features of the Pigeon Point Lighthouse Hostel include cove beaches, tidepools, an oceanfront boardwalk and free Wi-Fi.

Learn more: Pigeon Point Lighthouse Hostel

6. Contemporaneo Hostel – Botafogo, Brasil

A 100 year old hostel near Rio de Janerio, the Contemporaneo Hostel is artist-inspired hostel that caters to young artists and their guests. If the idea of waking up in a room full of artistic inspiration sounds like your kind of thing, then this is the hostel in Brazil to check out.

The Contemporaneo Hostel is also wheelchair accessible. It offers an accessible suite among their 6 suites that’s completely accessible and it has its own private bathroom. LCD TVs, free Wi-Fi, an art gallery and air-conditioning are also part of this property.

On top of accessible accommodations, the hostel is 300 meters from Rio de Janerio’s subway system that was just made accessible for the upcoming Olympics, helping explore Rio and the famous beaches of Copacabana and Ipanema.

Check it out: Contemporaneo Hostel

5. Zug Youth Hostel – Zug, Switzerland

A working hostel that’s been in operation since 1987, the Zug Youth Hostel has 88 beds and a whole infrastructure that caters to guests with disabilities. There’s also a onsite art exhibition that’s available to view for free. The Zug Youth Hostel has everything disabled guests may need, from a roll-in shower and accessible beds to a wide elevator.

A breakfast buffet every morning is also included, as well as vegetarian meals. This hostel is particularly good for athletes with disabilities too since it’s minutes away from the renowned Herti Sports Complex. Miles and miles of paved paths, a waterfall, as well as only 2 minutes from a nearby lake are some other attractions of the fabulous Zug Youth Hostel.

Check it out: Zug Youth Hostel

4. Extol Inn Youth Hostel – Prague, Czech Republic

A quiet youth hostel located near the heart of the historical center of Prague, Czech Republic, the Extol Inn Youth Hostel offers all the things you’d expect from a great hostel – 24 hour hot showers, self-serve kitchen, no curfew – combined with wheelchair accessibility and a lift (elevator).

What’s impressive about this particular hostel is the extras it offers – a restaurant, free Wi-Fi, secure parking, minutes away from accessible public transport, as well as a fitness room and a Jacuzzi available (for an additional price).

Check it out: Extol Inn Youth Hostel

3. Belfast International Youth Hostel – Belfast, Ireland

For you Ireland fans you can’t get a more accessible hostel in all of Ireland than the Belfast International Youth Hostel. Located between Belfast’s historical center and the University Quarter, this hostel is great for all ages and offers two rooms that are completely wheelchair accessible.

Free Wi-Fi, rentable computers, a cafe, walking tours, laundry facilities and 24 hour staffing are also included. To book an accessible room at the Belfast International Hostel, you must contact them directly.

Check it out: Belfast International Youth Hostel

2. Pere Tarres Youth Hostel – Barcelona, Spain

The Pere Tarres Hostel is a completely accessible hostel located in a brand new building right in the heart of the financial and shopping district of Barcelona, Spain. Thanks to hosting the Olympics in 1992, Barcelona is a peerlessly accessible European city.

This beautiful hostel offers 320 beds, 32 of which have been adapted for those with disabilities, meaning no bunk beds, bathrooms with roll-in shower and rooms free of architectural barriers. Each room has its own private bathroom as well. Other bonus features of the Pere Tarres Hostel include a bar-restaurant buffet, ping pong tables, laundry, Wi-Fi, security lockers and a car park.

Check it out: Pere Tarres Hostel

1. Koln-Riehl City Youth Hostel – Cologne, Germany

For a family-friendly hostel located on the Rhine River of Germany, look no further than the Koln-Riehl City Youth Hostel. This chic hostel offers 11 wheelchair accessible rooms, all of which have a private bathroom.

And this hostel is near everything awesome in Cologne – the Cologne Zoo, the cable car ride over the Rhine and adventure pools. The Koln-Riehl City Youth Hostel was also recently renovated in 2011 and a bunch of amenities were added, such as solar heat and power, an in-house bistro and bar and a disco.

Check it out: Koln-Riehl City Youth Hostel

You can’t beat the buying power of an accessible hostel vs. staying in a hotel. If you’re the type of person that gets up and goes when you’re on vacation, it really is the smartest financial decision. Most hostels charge less than $40/night per person. Just remember, most have stay restrictions (both minimum and maximum) so plan your stay accordingly.

Do you know of any amazing accessible hostels we missed?


Saying Goodbye to a Pet After 15 Years Together

daphcuteThis past week has been a tough one. My beloved cat of nearly 15 years, Daphne du Maurier, who I previously blogged about for this site, had to be put to sleep.

Her crazy long nails that always made noise when she crossed the wood floor, her daily visit to me at 5pm as I sat by my computer, her love of sliced turkey, none of that will happen ever again.

Daphne sadly had late stages of cancer which was completely unbeknownst to me. It was actually coming to the surface of her skin; something I had no idea was happening since I physically had a very hard time holding her. There was actually dozens of lumps all over her, but since I rarely held her, had no clue. The vet was in shock, and a huge feeling of guilt over all of this has been lingering in my mind since last week.

The saddest part though is losing a friend after 15 years. Daphne and I spent every day together, but when the day came where she could no longer jump onto the bed, we knew it was time to do what was necessary, and everything happened so quick. Five days before she was put to sleep, I had just noticed the missing fur under her armpits (where the cancer was surfacing), and then last Monday, a visit to the vet, and it was the end of the line.

Since I live alone, it has been very quiet in my place since she’s been gone. We spent so much time together that she and I were BFFs who completely understood each others quirks. Even when she drove me crazy I still loved her, and you know what I’m talking about too – fur balls everywhere, throwing up, everything that comes along with having a cat.

My wheelchair in her eyes was nothing but an accessory too, like a really good belt, which I loved. Animals and I have always gotten along really well, which explains why I’ve been so sad about my cat no longer being here. I know it was her time to go, but it just feels like we rushed it.

I hate putting animals to sleep. I’m pretty sure everybody goes through this, well accept for the heartless souls of the world that is. All I want is to know is that she’s in a better place. If I can know that, then I can move onto the next phase of my life contentedly.

Have you had to put an animal to sleep after 10+ years of them living with you?

Life is a Country Club and We’re Al From ‘Caddyshack’

al2The disability world is definitely no place people are lining to get into. You regretfully end up there, whether you’re born with a disability or somehow acquire it later in life. It’s a place most able-bodied individuals feel overwhelmingly uncomfortable.

This is why I feel like I have a lot in common with Rodney Dangerfield’s character in Caddyshack – Al Czverik – the quintessential story of a man trying to break into “society;” the upper-crusters if you will. In the movie he finally makes enough money to join a prestigious country club, but the snobs there aren’t having it, and they fight tooth and nail to get him kicked out

After my accident and going back to high school, I was totally channeling Al Cverik’s lousy country club experience. In the movie, he eventually does so many crazy things and hates the people of the country club so much that he gets kicked out. And while he’s disappointed at first, he eventually realizes it’s not a bad thing at all to not be accepted, or even liked by these individuals. I really wish I had emulated his hi-jinx in high school. I only got the shutting out part.

In fact, it’s a good thing to not be welcome. No false illusions or fakery. When you have a disability, you feel like Al a lot; so many places don’t want us there. It’s like we’re wandering gypsies in Stepford, USA, with no place to belong except with own people, wherever that is. You just can’t force people to get comfortable around us. This all comes in time, but we all know how some people just can’t be changed.

I think it’s important for all people with disabilities to remember this. I sometimes like to think that if I’m nice enough to people, that will be all that’s required to change even the most stubborn person out there uncomfortable around people disabilities, but sometimes it’s a lost cause. Sometimes the battle isn’t worth it.

It’s a better use of time instead to focus on liking yourself and your current life experiences, and not trying to fit into some mold you’re not going to like anyways (trust me I’ve been there). When you have a disability, sure we’re not automatically card carrying members of the prestigious country club world, but that club is totally overrated anyways.

That’s the beauty of having a disability – we get to march to our own tune. We don’t have to fit in, and trying to do so is too difficult anyways. All you need to focus on at the end of the day is your happiness. If you have that, the country club is a long forgotten memory.

Do you feel like you have to fight to fit in?

The Dreaded Ex

exbfSo you’re at a grocery store, and suddenly as you turn the corner you see your ex – they’re holding a box of pasta or some other food item, and they have their new significant other in-hand. You feel your heart sink to the bottom of your stomach and suddenly the last thing you want to do is eat.

Everybody knows this feeling. I have a whole rooster of exes, and every time I see one of them in passing this very feeling occurs. Even the most beautiful people in the world have exes they want to avoid, but it seems when you have a disability, we get the short end of the stick. People just can’t deal with our disabilities and we get rejected a lot more. The end result – we have more exes.

Now it usually isn’t my style to be such a negative ninny, but this is real-life stuff and it needs to be said. I think most people with disabilities can relate to this too. When you have a disability, especially when it’s acquired mid-relationship, we all await the dreaded day where our S.O. can’t take our disability anymore and leaves.

This doesn’t happen to all of us as course. Some of us happen to meet some fabulous people who prove there are still good people in the world. They’re just not easy to meet, which is the underlying problem (and a great topic for a future blog post). I would say though that only about 1 out of 100 people would seriously consider dating someone with a disability.

I do think however think our exes carry a significant amount of more guilt than if we were able-bodied, thinking our disabilities somehow make them more jerks for breaking up with us. The general public, family, friends, every facet of our society teaches us to be extra nice to those with disabilities. When they break up with us, their main fear is how they’ll be perceived.

As much as I like freebies and nice people, I dislike fake people even more, so I get angry men have to worry about this. If my boyfriend really doesn’t like me anymore, I’d rather have him break up with me than stay with me out of guilt. I just wish he would move out of state afterwards, because one of the most stressful things can be running into an ex, and it will happen to you at some point; mark my word.

It happened to me over the weekend in fact. I ran into an ex at a hotel, and his new girlfriend was an able-bodied version of me pretty much. It bugged me of course, but what did I expect? He wasn’t going to have another girlfriend who used a wheelchair. All of those paranoid-fueled comparisons entered my mind that all people with spinal cord injuries get whenever something like this happens.

We always fear we aren’t good enough, and that an able-bodied replacement is right around the corner. It’s a natural human fear. Replace “able-bodied” with younger, skinner, prettier or richer, and the rest of the world can relate.

It just never gets easy running into an ex, but when you’re single and wanting to find someone, it’s a risk you must be willing sign up for. Without risk there is no reward, especially when it comes to romance.

Does running into an ex cause you stress? How do you handle it?

Photo courtesy of Flickr CC

Wheelchair Cosplay Ain’t Nothing But a Thing

coolIt seems suddenly my ultra-geeky hobby has become mainstream, and no, I’m not talking about my obsession with online virtual reality games (that’s for another length post imho).

I’m referring to my well-known obsession with costuming from a wheelchair, a.k.a. cosplay if the dressing up is done in a geeky setting. Yes cosplay, a term you may have heard of before (Hereos of Cosplay anyone?).

Everywhere you go these days you’ll see references to classic superheroes – Batman, Spiderman, Ironman, Captain America., Superman – on cars, on clothing, in our media. They’re everywhere. The public just can’t get enough of DC and Marvel, which is exactly why cosplay has exploded.

Combine all the superhero movies being made in the last decade-plus with all of the young creative liberals out there, and many that have disabilities, and you have a recipe for the rebirth of cosplay in the disability world.

I am personally thrilled to see cosplay exploding the way it is, even if admittedly there are a lot of young, much-more-attractive-people than me now attending these conventions in costumes that are simply amazing (and making stuff way better than anything I’ve put together).

That’s right, cosplay competitions are strictly focused on pieces of the costume you’ve made, which is why I don’t enter. Because I can’t move my hands, anything crafty is quite difficult. I like to have fun and not stress about making my costume perfect, which is what you kinda have to do when you enter. I do however put a lot of thought into the overall look, and love to accessorize.

I started wheelchair cosplaying seven years ago, and for my first costume I went as a member of the Steve Zissou Society from the Life Aquatic. My friend and I were able to create our costumes by going by online and also hiring a friend to sew Zissou patches on our shirts. Our costumes were relatively simple, but everyone loved them. I was hooked.

The following year I decided to do even more costumes, adding She-Ra, Six from Battlestar Galactica to my line-up, and holy cow were both costumes a great idea. I call costumes like these “crowd pleasers” because they’re so recognizable and sexy, and the best part was that my wheelchair was never an issue. I did hear through the grapevine however that people who didn’t know me would refer to me as the “She-Ra in a wheelchair” or “Six in a wheelchair.”

And next week, after a several year hiatus, I’m delving straight back into the cosplay scene. I feel a bit rusty, but I can blame my cosplay-hatin’ ex-boyfriend on that. I’ve decided this is the year I’m going to do Oracle from Birds of Prey/Batman – the famous paralyzed comic book character formally known as Batgirl, shot and paralyzed by the Joker way back in an issue from 1989.

She has since been miraculously healed by the comic’s writers, much to the anger of readers with disabilities who feel her healing wasn’t realistic (it wasn’t), but I will still be dressing up as Oracle. So much love for the character. I’m also going as a star fleet officer from Star Trek (red dress, braided bun and all) and a feminized version of Chewbacca, all while in my wheelchair.

Just remember, if you want to cosplay, working your wheelchair into each costume isn’t always required. It doesn’t always have to be part of it, it can be just background noise and don’t let anyone tell you differently. Also, when putting on that costume in your chair, also remember – Gorilla tape is your friend.

As the saying goes, “Cosplay is for everyone,” and it couldn’t be more true for cosplayers with disabilities. If you have any doubts, simply ask “Misa on Wheels,” one of the the most amazing wheelchair cosplayers in the world.

– Check her out: Misa on Wheels

Amazing wheelchair cosplayers compiled by the Nerdist

Have you cosplayed before, and what was your costume?

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