We're moving!

Dear Different Spokes readers, 

We're very excited to tell you that we're moving! Not house, or state, but blog! 

Starting today, we're going to be blogging at ChicagoNow, which is a blogging site connected to the Chicago Tribune. ChicagoNow is a site that hosts blogs about every subject imaginable, including thoughts on living with a disability and getting through life if your name is Derin, Dan, or Chris.

We're going to be doing the same kinds of posts, and the same kind of writing, even the same name, just at a different address. We hope you'll join us over there and that you continue to enjoy our blog.We will be reposting many of our past entries, but we're putting up new ones at the same time, so don't let the sight of a familiar post deter you from checking back. 

While we have your attention, we'd like to briefly thank you all for the support you've given us thus far. One of our main goals with this blog is to educate and open your eyes to the possibilities you haven't thought of. A lot of you have let us know if we've written something that you never thought about, or gave you a new way of looking at something. We love to hear that you've learned something, and we love when you give us suggestions of things you want to hear about or have always wanted to know, so please keep it coming. Thank you all!

Again, we can now be found at: http://www.chicagonow.com/blogs/different-spokes-life-with-a-disability/

Derin, Chris, and Dan

Reader Question: Cutting in line at amusement parks or fairs

Here's a reader question from Wilson, in Florida. Wilson says:

"One question I'd love for you to discuss is the "cut to the front" line at Disney World for those in wheelchairs. Your brother loved this ancillary benefit but I wonder how you feel about it... Is it necessary or not necessary?"

We touched on this briefly during one of our "Why Being in a Wheelchair Doesn't Suck" posts, but here's a more serious perspective.

Dan's Take: I personally love the benefit of not having to wait in line for an amusement park ride. Not only that but you get to stay on the ride twice without getting off. With the difficulty it takes to get out of your wheelchair and on to the park ride, it makes perfect sense for this policy to be in place. That being said, I can understand some people's frustrations when they spend 6 hours at an amusement park and can only ride three or four roller coasters due to the lengths of the lines. Meanwhile we can squeeze in ten or eleven different attractions during that time. One thing that people have to take into account is that there are a number of rides that we are not allowed to go on, due to back problems, height, balance, muscle strength, issues with seizures, etc. While I actually don't have a number of physical reasons that I can't wait in line, this is not the case for everyone with a physical disability.

Chris's Take: I can understand why seeing someone being able to cut hours in front of you in line could cause frustrations. Some people with disabilities do not really need to be able to do so. However, in my case, I would need to avoid extensive time waiting for a ride or attraction. I have heart and respiratory conditions, which make it difficult and often dangerous for me to wait in excessive heat or in damp or cold weather. In addition, because I have a muscle related disease, I get tired more easily than almost anybody else. I am even more limited than Dan in what I can do at an amusement park. While this policy does not always seem to make sense to the average amusement park visitor, extreme circumstances dictate that it must still be maintained. The workers cannot decide if one person is more "disabled" than someone else.

Why Being In a Wheelchair Doesn't Suck

Part six in a sometimes-weekly series.

Let's face it: there are a lot of times when being in a wheelchair sucks.You can't go fly-fishing in Montana, you can't play hopscotch on the playground, and you can't steal batteries from the smoke detector to put in your remote control when the White Sox are on.

But there are times when being in a wheelchair doesn't suck. One is that you don't have to remove your shoes when you go to somebody's house. Since our shoes don't get dirty, our logical substitute are our wheels...and  how ridiculous does this look?

Imagine trying to take Chris's wheels on and off his 400 pound chair!

Our wheels may be our shoes, but you won't get a very nice reaction if you ask someone to leave their wheelchair at the door.  Just try it! Never having to remove your shoes means that you never have to learn how to tie them, since you don't have to take them off! Shoes last 5-6 years more, since they never wear out, and it saves you a ton of money. You don't have to replace your shoe polish as often, and you'll probably never snap a shoelace.

This has a plethora of advantages. Your feet stay warmer. You don't have to worry about foot odor at a party because you can hide behind your snazzy hightops. In some cases, you don't even have to worry about comfort, so you can buy those Manolo Blahniks that don't come in your size and sacrifice nothing for beauty. You can't track dog or bird poop through the house on the carpet your mom just washed. Puddles cower in your presence, and airport security is a breeze (until you factor in the personal pat-down). Overall, not having to remove your shoes is a benefit not many get to enjoy. Now having all these things happen to your wheels...that's a story for another day...

Reader question: Would you prefer able-bodied friends to "stoop to your level?"

We got a reader comment from Jeff, of Michigan, asking which we prefer: that an able-bodied person bend down to talk to us, kneel down, or stay at their own height? Here's what Jeff had to say:

 

    "A lot of people, myself included, would prefer to just talk to someone instead of them bending down to "our level"...I think some people feel like it makes them feel like they are a kid again."

 

Chris's Take: As far as I'm concerned, I view it as a sign of respect when someone makes the effort to come down to my level. Ideally, the best way to do this is to kneel down or to pull up a chair so that we can have a conversation and be able to hear each other. It's also very useful for everybody to fit into a shot for a picture being taken. However, it can be awkward when someone leans against your chair for purposes of conversation, pictures, etc. It feels like an invasion of personal space, even though the person is probably well-intentioned. Also it can cause problems with your wheelchair where it may cause you to crash into a wall or someone else. In the rare instance where a person leans in almost as a false gesture the same way they would lean in towards a child, then it can be awkward and disrespectful. I have noticed that often it is adults who take the initiative to create and maintain eye contact. In my experience, the longer many people have been around, the more they realize that it is important to relate to others. I would rather have someone take steps to relate than to not even bother to do so at all. 

Dan's Take: I personally really enjoy when somebody kneels down to my level. It allows me to make eye-to-eye contact with them, which to me creates a more personal connection. The physical motion of somebody looming over me to listen does make me feel like a child in some sense, as it creates a more intimidating atmosphere. In terms of taking a picture, I would never get upset if someone kneeled down to my level. In fact some of the best pictures I've taken are when friends or family are next to me and we're all at the same head level. It makes me feel like more of an equal. This is all personal preference of course, both for the person with a disability and the able-bodied person with whom he's conversing. 

These are our views, but we'd love to hear some of yours, so please share!

It's not always your fault...

Many times, Chris and I accidentally crash into a stranger on the street. There are times where we may cut you off on the sidewalk without realizing it. And believe it or not, when those things happen, it's our fault!

Too often, when we run somebody over, we are told "sorry" by the victim. Instead, we should be the one apologizing. The fact is, we don't always bother to look where we're going, and just because we use a wheelchair doesn't mean we shouldn't be held accountable for our actions. By apologizing when we're the ones at fault, somebody is unknowingly portraying the idea that we have no control over our actions.

The point is, strangers should treat individuals in wheelchairs the same way they would treat everybody else. For instance, we don't expect you to hold the door open for any other reason than common courtesy. I mean, if you have a stroller, a family of seven, or if you'll unintentionally block the doorway yourself while holding it open, then by all means head on through! We'll take care of it ourselves. If you do want to help by holding the door open for us, stand on the outside of the door. That will clear the way for us to pass through and won't lead to a traffic jam as you block our path. 

You also don't need leave us a 10-foot-wide radius as we wheel down the sidewalk. All we need is enough space for our chair to get by. And you don't need to rudely announce in the middle of a crowd that there's a "wheelchair coming through!" We're not wheelchairs, we're people. Chris and I go to baseball games all the time, we've done this before...

We've even had cars stop for us at green lights while we are patiently waiting to cross the road. This creates a dangerous situation. Do we go so you get the satisfaction of being a nice person? But what if other cars are coming that don't plan on stopping at a green light? In the end, the nicest thing to do would be to follow the traffic signals. We plan on doing that. It's why they're there.

In the end, we don't expect you to go out of your way to make our lives easier. If we're out and about in public, it's because we can fend for ourselves. And if we do need help, we're big boys and we'll ask for it.

Which brings me back to my original point. Don't go out of your way to have sympathy for us. If we screw up and run into you, let us apologize for it. Let us live our lives and learn from our mistakes so that we will improve upon them the next time.  Don't get us wrong, we appreciate your good intentions, we just don't need help all the time.

So next time I run into you on the sidewalk, assess the situation. If it's your fault, apologize. If not, let me do the same and we'll both go about our days as if nothing happened...

Minnesota Public Radio commentary by Haddayr Copley-Woods: Etiquette when interacting with the disabled.

We'd like to give a shout-out to Haddayr Copley-Woods, a fellow blogger, wheelchair user, and frequent commenter on this blog. She recently did a piece for Minnesota Public Radio about the "Dos and Don'ts when interacting with the disabled." Not only do we agree with everything she said, but we laughed a lot, and think you should read it too, then search her name on the MPR website and read some of her other commentaries. A few of our favorites are below:

"DON'T 'Help' without asking. If someone in a wheelchair has rolled up to a door, they probably have some sort of a plan. Leaping over us and flinging the door into our shins is not a noble gesture. And NEVER just grab the back of someone's wheelchair or a blind person's arm and start 'helping.' Imagine how startling it would be if random strangers started shoving you around.

DO Acknowledge us without staring. This means letting us place our own coffee orders and noticing when we are trying to get around you in crowds.

DO Give up your seat on the bus or train for disabled people if you were sitting in the accessible seats.

DON'T Look around beaming, expecting praise for this selfless humanitarian gesture. You did not just save ten children from a landslide."

Haddayr also has her own blog, which touches on current events, links to interesting stories, gives updates on her writing progress, and sometimes previews disability pieces before they are submitted elsewhere. Go check her out!

Why being in a wheelchair doesn't suck:

Part five in our non-weekly series.

Let's face it: there are a lot of times when being in a wheelchair sucks. You can't dance the Cha Cha Slide at weddings, people who are 5'2" make you feel short, and sagging your jeans doesn't have the same effect as it would if you were able-bodied.

But there are perks to using a wheelchair. One reason is that you are memorable. This can be an advantage and a disadvantage. Let's take a look at some pros and cons.

As wheelchair users, we stand out in a crowd (even though we can't stand). We're recognizable after fewer meetings or visits than the average Bartolo. First impressions are always important, and we make a pretty unique one.

The advantages to always being recognized is that you often get better service in a restaurant. They will know you as a frequent customer and make sure your rootbeer doesn't have ice and your salad doesn't have cheese. You may get a nicer table, and faster service. Being more recognizable also helps you keep acquaintances and contacts longer without having to do any work. This can lead to more connections, opportunities, job offers, and friendships than you may not have had otherwise. You also stand out to girls (or boys if that's your preference) and have an aura of mystery over other males (or females).

The disadvantages to being so memorable is that you are then expected to know who all of these people are. People honk at you as they drive past in their cars and make you feel like you're being stalked. Professors stop you on the sidewalk to chat and you don't remember them. This makes it difficult to introduce others, because you don't want to admit you don't remember them, and they just know you because you were the token wheelchair user in their classroom.

Our advice for this situation is to introduce your friends and ignore that the person you're talking to has a name. Try not to suddenly shout out their name once you remember them, as this will draw attention to the fact that you didn't recognize them in the first place. And always travel in pairs, so your partner in crime can introduce themselves and save a potentially sticky situation.

If these solutions don't work for you, the best way we can think of to be less memorable is take what you can't do, and just do it. Get up and walk.

Reader email! What is proper bathroom etiquette?

Sometimes we get a question from a reader regarding posts that we've written. And we're nice people, so we like to respond to those questions! Both Chris and I offer our responses to this recent question from Liz in Washington, D.C.,

"A couple posts ago you mentioned that the accessible bathroom stalls are necessary to fit your wheelchairs in and I was reminded of a Dear Abby question I read once a few years ago that I felt never really got answered in the response...At a sporting event or such, if there are a lot of people in line, when does someone let a wheelchair user go ahead of them so that he can have the accessible stall - when the person using a wheelchair gets in line or when he gets close to the front? I was just wondering what your thoughts were on the issue. People got all sorts of angry on both sides in the comments if I recall correctly."

Dan: To me, I don't think I deserve to move to the front of any line simply because I'm in a wheelchair. So in a crowded bathroom, if the accessible stall is freed up, the next person in line has every right to take it. However, if there is more than one stall available, please leave the wheelchair stall empty. It's the only one I can use, while an able-bodied person can use any other stall. The one caveat to this would be if I were at a specific place in line where I happened to be directly in the doorway. This would block flow of traffic both in and out of the bathroom. Therefore, it would be justified to allow me to take a different place in line so everyone can move freely. To be honest, I feel weird if a person three spots ahead of me tells me to go first into the accessible stall. While I know it's just other people being nice, it seems as if I'm being singled out and being given special treatment.

Chris: Simply stated, handicapped accessible stalls should be reserved for users of wheelchairs. Obviously, crowded bathrooms like those at a sporting event or concert present a different set of issues. Perhaps one should use the 1-10 level of urgency scale. If the number is 7 or higher, please use the stall. I think it would be a bit narrow-minded to think that only people with disabilities should use the stalls. We should be given priority because those are the only stalls our wheelchairs actually fit into. But as far as I am concerned, if you take a little time to evaluate the situation, then no worries. Just realize that if you use the handicapped stall when other ones are open, when you come out and see someone like me or Dan waiting, then you will probably feel pretty stupid.

Training in a new personal assistant

As personal assistants come and go, simply finding a new one is not the only challenge. You also need to take the time and effort needed to properly train one in.

The most important thing is to make sure that he or she can take care of your needs. A personal assistant needs to be able to complete your routine each day. They have to be able to help you get positioned in your wheelchair or in bed. Of course, they also need to show that they can be on time, be responsible, and communicate. The specific requirements for a personal assistant are different according to the person they are helping.

A huge part of training a PA involves building trust with that person. After all, it is a relationship which includes trusting your physical well-being largely to someone other than yourself. In all honesty, this takes the most time to develop. It is impossible to know that a person can assist you until they have actually done so a number of times.

It is important to play down any anxiety you may be feeling as you train in a new PA. If you believe that you have hired the right assistant, then that is usually the case. It is not likely that they will drop you, start arguments or crash your wheelchair into the wall. One must also learn to develop and exhibit a large amount of patience with your personal assistant. This will make the transition as easy as possible. Even though I have not covered everything, this should give you a brief overview of the types of things to look for when finding the perfect PA.

Giving credit where credit is due

A few weeks ago, the hit show "Glee" started airing the second half of its first season on FOX. It's one of the few shows on television that has taken a character with a disability and completely integrated him within the storyline. Artie, played by 21-year-old Kevin McHale, is a high school student who uses a wheelchair. In his school, and the glee club he's a part of, Artie's disability is never thought of as a big deal. The following is a clip from an episode in which the glee club director has each member use a wheelchair for 3 hours a day in order to put themselves in Artie's wheels and see what life is like for those with a disability.



This clip, and the message the show is portraying, is fantastic. None of the characters are being pushed around by others, Artie is shown as being "just another student," and there's never any excuses made if there's something he can't do. This is the first mainstream show I can remember where a person with a disability is seen as just a part life, just as many of us are in our workplace, school, etc.

However, many in the disabled community are upset that an actor with a disability was not chosen for the role of Artie (McHale is able-bodied). In an article published in USA Today, Gloria Castaneda of the Media Access Office says, "There are very talented performers with disabilities. ... We just don't know what producers are thinking." I know what the producers are thinking. He or she is trying to find the best actor for a specific role. The producer should not be forced to limit himself by solely searching for an actor that uses a wheelchair. Are there actors out there who use a chair? Sure! But that doesn't mean they could sing, dance, and fit this role as well as McHale does. Think about it this way. As much as I don't want to be passed over for a job merely because I use a chair, I also don't want to get a job merely because I use a chair. We can't have it both ways in the disabled community. We can't want special treatment (such as being chosen for a specific acting role), while at the same time push for full assimilation into mainstream society.

It seems that there are some in the disabled community who constantly point out the negative in any situation. We should be celebrating the message sent by "Glee," not criticizing the creators for choosing an able-bodied actor. If we constantly criticize the able-bodied community, even while they are making strides towards equality, what incentive is there for them to continue their efforts? They will start to believe that the disabled community will never be pleased. Because of that, we need to choose our battles wisely, and give credit where credit is due. In the end, baby steps are okay. And what "Glee" is doing is not just a baby step, but a fairly sizable leap towards acceptance of those with disabilities. So good work "Glee," keep it up!

15 Surprises About Living With a Disability

The more we've been writing this blog, the more feedback we've been getting from friends and family who are finding out things they never knew about ourselves and our disabilities. There are numerous factors that we always need to consider in our lives, from dealing with snow to being able to reach light switches. Here are fifteen things we deal with that you may have never even thought about:

1. If you can't feel your legs like Dan, placing hot plates of food on your lap can burn you and you don't even realize it. On the other end of the spectrum, cold temperatures in winter could give him frostbite without him being aware. Constantly being cautious about extreme temperatures is something we always keep in mind.
2. If you have a personal assistant (PA), you need to buy an extra ticket for them to sit with you at any event.
3. You have to prove to insurance that your current wheelchair doesn't function properly before they'll give you a new one.
4. Cars with hand controls still have normal pedals.
5. If you're slow in front of a crowd, chances are it's not because you're slow, but because the crowd is slow.

6. We don't use stalls other than the handicapped ones in bathrooms because we don't fit through their doors. We don't just go in the handicapped one because there are bars there (which many of us don't even use), so when you use it and don't need it, we have to sit and wait for you to leave (and then you usually feel like crap-as you should). Also, safety bars in bathrooms are not nearly as helpful as being able to fit through the bathroom door.

7. You need to give a car rental place 24 hour notice to get a car with hand controls, and there's no guarantee that the car will have the controls on the side of the steering wheel you're used to.
8. ADA accessibility does not work for everyone that uses a wheelchair-having a ramp doesn't mean the doors are wide enough, the light switches are low enough, or that there's no threshold.
9. When the fire alarm goes off, the elevators lock, and you are stuck on whatever floor you were on when it started. You have to wait for firefighters to come get you, and carry you down the stairs-which means leaving your chair behind, then causing a problem once you get to the ground.
10. When you're a minor, you can't make decisions about your disability with schools and ADA issues, but the second you hit 18, your parents no longer can make those decisions and you are in charge of everything-without a transition period.

11. All wheelchairs are custom fit to your body shape and type, including back style and cushions.

12. Insurance doesn't pay for those colored spokes and light up wheels-or for purple metal on your chair

13. Handlebars aren't on wheelchairs so other people can lean on them.

14. Also, just because there are handlebars on your chair, that doesn't mean we need help being pushed.

15. When taking a trip that requires using an airport, add on at least one hour, because you're the first one on the plane and the last one off.  That's not including the time needed to request an aisle chair, the transfer involved, and waiting for your chair to come back out of the baggage hold.

A quality piece of journalism

Recently, we wrote an entry about our frustration with the way the media talks about disabilities. From saying a person is "confined" to a wheelchair, to talking about somebody as "suffering" from a birth defect, the media oftentimes uses adjectives that are hurtful and false.

But as this article in the Chicago Tribune shows, it's unfair to lump all journalists together. Lolly Bowean does a fantastic job of telling the story of a new wheelchair basketball team in the south suburbs of Chicago. This became immediately clear in just the second paragraph, when Bowean says Tony "has spina bifida and uses a wheelchair." Later, Bowean describes the athletes as "gliding," "pumping the chair," and "rolling [themselves]" up and down the court. From a journalistic standpoint, this is tremendous. These are all phrases that accurately paint a picture, yet at the same time don't portray the athletes in a negative light (even subconsciously).

In the end, Bowean treats the athletes as they should be treated: as athletes. And for that, she earns the inaugural golden spoke quality journalism award from us here at Different Spokes!

How to treat able-bodied folk who sit at your special wheelchair table at Starbucks:

Ending the use of the "R" word

I just wanted to give a quick shout out to the students at our hometown Evanston Township High School. They've created a petition to encourage students to stop using "retarded" or "retard" as an insult towards others. So far, the petition has collected 3,000 signatures! Read about it here.

The use of "retarded" as an insult is a pet peeve of mine, and I know it's the same for many others as well. Mental retardation is a very real and very serious disability, and it shouldn't be mocked by using the term as an insult. It's just as disappointing to me as if somebody called another person "handicapped" if they didn't do something right physically. I hope the actions by those at ETHS can lead to similar things at high schools across the nation.

The media's struggle with disabilities

As we've mentioned before, restaurants, airlines, and other companies tend to struggle when it comes to dealing with a person with a disability. One line of work we haven't touched on yet is the media. And believe me, despite working in the journalism field, the media is not exempt from my disdain!

There are three phrases found in almost every article about a person with a disability. And each of these statements drives me up the wall. Let's examine them individually:

"Suffers from...": As in, "Daniel suffers from Spina bifida." Another example can be found in this article that popped up on my Google news the other day. Let's see...I enjoy watching sports all day, go on long walks/wheels when the weather is nice, and hold down a nice job. Am I really suffering? In the article I linked to, 9-year-old Kaitlin is a member of the cheer leading team. Is she really suffering?

To me, suffering is a mindset. So if somebody truly is suffering from a debilitating disease, a journalist has every right to convey that. However, when it's used in every article about every person with a disability, the phrase loses all relative meaning and becomes practically useless.

"Confined to a wheelchair": When a kid asks me "How do I sleep?" I can shrug that off and laugh about it. But when an adult assumes that I'm sitting here all day, and can't get out of my chair, I want to cry about it. Seriously, I'm sitting here "stuck" in my chair all day? Not only that, but the only other time I ever see the media use the phrase "confined" comes when they talk about a prisoner being in "solitary confinement." Are they comparing a person in a wheelchair to a prisoner? If so, we have bigger problems than even I thought. This leads me to the final phrase...

"Wheelchair-bound": To me, this is another lazy way for journalists to tell the reader that we, in fact, use a wheelchair! It's not hard to say, "Daniel uses a wheelchair for mobility." I understand space limits, and know that "wheelchair-bound" is two words while my example is a whopping six words. But if it means we can help shatter an incorrect stereotype, I'd like to think that a reporter can spare four words somewhere else.

It is easy to focus my anger on the journalists themselves. However, to me, this issue is much broader and begins at the very roots of the journalism tree. I went through a 4-year, intensive journalism program at one of the top journalism schools in the nation and they never once mentioned how to describe an individual with a disability. How are journalists supposed to understand that these phrases are not only hurtful, but inaccurate, if they are never taught otherwise? Therefore, only once we re-educate our current journalists and pass these messages along to the next generation will we begin to see the necessary changes in the media's treatment of those with disabilities.

Why being in a wheelchair doesn't suck

Part four in a weekly series.

Let's face it: there are a lot of times when being in a wheelchair sucks. You can't take a "jump shot" to beat the buzzer, you'll never know the thrill of falling out of a tree, and you have to spend more money repairing walls and doors than the average dude.

But sometimes, being in a wheelchair doesn't suck. Let's take a look at one reason: you have an instant chair wherever you go.

Having an instant chair is very helpful in numerous situations. You can't get tired while waiting in line at the grocery store. At an outdoor concert, you don't need to bring a folding chair or blanket. If someone steals all of the chairs to a table at Starbucks, you still have the option of sitting there. And if you're on a crowded train or subway car, you don't need to vie for a seat because you were smart and brought your own!

Of course, one of the most important reasons to use a wheelchair: chicks dig having a portable seat on which to rest their weary legs. And it's our duty to provide that.

How to talk to your kids about wheelchairs.

After reading our previous post "Kids say the darndest things," someone on Facebook asked what she should tell her kids when they have a question about someone using a wheelchair. While we aren't trying to tell you how to parent your children, we have a few suggestions of how to deal with the situation.

First of all, encourage your children to ask questions. Most people will welcome the opportunity to talk with your child and explain his/her disability. Those that don't want to discuss it are usually polite about declining to share. The best thing you can do as a parent is talk to your kid about how to phrase their questions. A great way to ask is "Why do you use a wheelchair?" instead of "why can't you walk?" or "what's wrong with you/them?" For one thing, it may not be the case for everyone that they use a chair because they can't walk. Asking why we use a wheelchair doesn't imply anything negative, makes no assumptions, doesn't imply that a greater disability than visible exists, doesn't magnify the situation, and doesn't imply that there's something wrong with using a wheelchair.

If your children are too scared to approach a wheelchair user, you can explain that they use it to help them get around because they may have trouble walking. This could stem from an accident, a condition they're born with, or maybe a disease, among other causes. Do not assume that all wheelchair users are paralyzed, or cannot walk at all. Also don't make assumptions that they have only been temporarily injured, like a broken leg. This is often inaccurate, and the last thing you want is to misinform your kids.

As wheelchair users, it feels awkward to be stared at, and being asked questions makes you feel human (not like an exhibit in a zoo). This also gives us a chance to educate them so when they grow older they can educate others, and view wheelchair users as an accepted part of their community just like everybody else.

People who sit are just as tall as people who stand

   The mainstream media often views standing as a symbol of strength and confidence. I can understand how this makes perfect sense from an able-bodied perspective. Sitting can be seen as an indication of weakness, uneasiness, or a lack of confidence. Our political figures are usually seen standing at the podium as they deliver speeches. Within the community of people with disabilities, our strength must be measured by a different standard as standing is usually difficult if not impossible.

    During the 1930s and '40s Franklin Roosevelt hid his disability from the media and the American people. He used a wheelchair as a result of contracting polio as a child, yet he and his advisers felt that knowledge of his physical condition would make him seem weak and unsuited to do the job of the President. The attitude of US society has become much more open-minded since that time, yet misconceptions remain. Much of this stems from unfamiliarity with disability as a whole or in specific situations.

    In many cases the apparent physical strength of an individual with a disability has no link to their intelligence or character. Whether somebody can walk for short distances, propel themselves in a manual wheelchair, or drive a power wheelchair has no bearing on what they are actually capable of achieving. Some sit upright, while others tilt, lean forward, or find themselves in some other position. Some breathe on their own, some use oxygen, and others require ventilators.

   Dan and I are both examples of this reality. We are graduates of one of the best schools in the country and the world, and we are both working on this blog in an effort to raise awareness and acceptance of people with disabilities. Many other people with disabilities are doing constructive things with their lives. Some are activists, writers, athletes, lawyers, doctors, or even political leaders. Still others have been wounded in the line of duty as police officers, as veterans of military actions, or as victims of gang violence. Many of them have found other things to do with their lives that contribute to the world in one way or another. This is just a sampling of what people with disabilities are doing. Disability does not mean that one lacks ability.

     The point is relatively clear once it has been revealed. While people with disabilities may do things in a different way, they still do the same things as those who are able bodied. This includes exhibiting strength, courage, and ability. I hope that those reading will remember that people who sit are just as tall as people who stand. If people are willing to be open minded in examining various issues, then outside appearances could be stripped away to reveal the truth. The inside of a person holds their real identity, whether it is extraordinary, ugly, or just plain ordinary.

Kids say the darndest things...

One of the best parts of using a wheelchair is seeing different people react to you. Many adults stare at you while trying to make it look like they aren't, trip over themselves to hold the door for you while blocking it with their body, and are afraid to ask why you use a wheelchair (or ask it loudly after knowing you for 5 minutes).

Kids however, have no such filter. Dan and Chris have been asked all sorts of questions ranging from curious ignorance to outrageous theories. Here's our top five:

1. "Look, a choo choo train!" 
2. "Can I have a car like that guy?"
3. "Can I use that when you're done?"
4. "Were you born in a wheelchair?"
5. "How do you sleep?"

The general consensus around here is that the best kids are the ones that look at you like you're completely normal. Of course that dude uses a wheelchair, why wouldn't he?  One of our favorites was a little boy who asked all sorts of questions about why Dan was paralyzed, used a wheelchair, etc, then came to the following conclusion: "You must be very special!" You got that right kid.

The difference between an Olympian and a Paralympian

Here's another fantastic advertisement sent to us by Dr. Michael Ellman, again featuring Matt Scott (along with Chicago Bull Luol Deng). This one was created by the committee behind Chicago's bid for the 2016 Summer Olympics. It again points out that Paralympic athletes are just as deserving of our respect as their able-bodied counterparts. It seems that slowly but surely, the mainstream media is helping spread the word about the incredible talent of athletes with disabilities.

Please pass along any other videos like this, and I'll be sure to post it on our blog!

The best Nike commercial ever made

For the most part, wheelchair basketball has not entered into American mainstream media. That changed a few years ago when Nike came out with this commercial. It features a friend of mine who I used to play basketball with in high school, Matt Scott. He's now a member of the U.S. national team and plays overseas in Europe. I think it's a brilliantly produced ad, and sends a ridiculously powerful message. Enjoy!

Why being in a wheelchair doesn't suck

Part Three in a weekly series.

Let's face it: there are a lot of times when being in a wheelchair sucks. You can't express your appreciation for a Britney Spears concert with a standing ovation, you can only go so low during the Limbo, and you'll never fit your chair in a Lamborghini.

But sometimes, being in a wheelchair doesn't suck. Let's take a look at one of the best reasons: parking spots.

Every public parking lot must have a certain number of handicapped spots, which are closest to the building's entrance. At busy malls, restaurants, and stadiums, we don't need to worry about a place to give our automobiles some R&R. These are well-marked and easy to find, and it's always comforting to park in front of an image of ourselves.

Because these are closer, you reduce the dangerous risks of frostbite in the mad dash from your car to 7-11, and you lessen your exposure to the elements, good for those who may have compromised immune systems. Not only are you closer to your destination, but you have a wider unloading space, which gives you extra protection from those jerks at the grocery store who are too lazy to walk their empty cart an extra 5 feet to the return rack.

Another hidden benefit that we hope those able-bodied folk never pick up on is the federal law that those with handicapped permits never have to pay a parking meter. This is particularly useful in big cities like Chicago, because you're not as limited in your choices. Sometimes other events, particularly sports stadiums, will also either lower the prices or let you park for free if you have a handicap pass. This will hopefully make everyone else as jealous of you as possible.

The one negative side effect to these benefits are your friends and family. Inevitably, once they catch on to your perks, they will try and make you drive all the time. You will always be the tailgate vehicle of choice, and you will always have to go circle the block because it will be "easier" for you to find a different spot. So hide your perks from them while still strutting around with pride at how much more special than them you are.

You won't see my name in a box score, and that's just fine!

Today I find myself in the wake of the Winter Olympics, the stretch run of the NHL season, and the buildup to March Madness. Many sports fans claim that they could go out on the field, court, ice, etc. and play their favorite game as well as a professional athlete. Others have tried and realized that sports are not their calling. As somebody who never had that chance, I feel like I offer a unique perspective on the world of sports.

Dan played junior wheelchair basketball, and a few of his friends and teammates continued playing in college. Some are now overseas playing pro ball. And while it's not nearly as common as an able-bodied athlete becoming a star here in the U.S., they've been able to make a living as a professional athlete. It is outstanding that it has worked out for them, and it shows that they are just as dedicated as any other athlete.

Meanwhile, I have played Challenger League baseball, a small amount of power soccer, and wheelchair floor hockey. But athletics for people who use power wheelchairs have not reached the same level of popularity as other sports in our society. This does not diminish the importance for those who play and those who support the players. When I participate in sports, I am out there to win and to have fun.

Some of our readers may be thinking that I never got a fair shake. While that may be true, the reality is that life is sometimes unfair and I have learned my way of coping just as anyone else would with any other hardship. Sure, I sometimes get frustrated and angry, but it's never anything I dwell upon.

If I had the opportunity to play any sport, I would have picked baseball. I have always been a die-hard White Sox fan, and have always loved the game. I would have wanted to play shortstop, but I would have been fine with any position as long as I was out on that field. It's always fun to think that I could have been a Hall of Famer, but God only knows if I would have been any good at all.

In all reality, it would have been great to have the opportunity to play any sport I desired. Honestly, it was just not meant to be and that's just fine. The name Christopher Sanchez will not appear in the box score of any sports section. Because of that, I feel like I can watch a game without becoming frustrated with my own physical and athletic limitations. I'm not trying to say that I never criticize athletes, but that is something that is often unfair and negative. All it amounts to is wasted words. So while one can criticize players for making mistakes, the people who do that never enjoy the sport for what it is: a game played by athletes for our entertainment.

I feel that the lesson here is simple. If you can't hit a baseball, make a three pointer, throw a spiral, or score a goal, it's okay. There is something else out there for you. It is important to accept what you can or can't do. I know that it's easy to become angry and negative. You just have to get past that. I realize that I should not lash out at others, no matter how much talent or money they may have. I guarantee that as impressive as high-caliber athletes may appear, there is also something that you are able to do that they cannot. Don't waste your time on criticism and frustration. After all, nobody really knows what they can do until they go out there and try it for themselves.

Paralympics Coverage

We'd like to briefly mention that Dr. Gene Emmer was kind enough to let us know of a place where you can watch the Paralympics. Here is the link to the live video broadcast of this year's Paralympic Games. You can also find it in our links list on the right side of this page. Check out Gene's site, which sells wheelchair accessories. Thanks Gene, and enjoy the Paralympics everyone!

An Idiot's Guide to the Paralympic Winter Games

Though the hordes of media have moved out of Vancouver by now, and the 24-hour TV coverage has long since ended, a whole new group of athletes will be descending upon British Columbia next week. That's right, exactly one week from today, the 2010 Paralympic Winter Games begin.

And while the Paralympic sports and athletes may not get the media attention reserved for Sidney Crosby, Lindsey Vonn, or Bode Miller, they are no less deserving of our respect. With that in mind, here's a quick run-down of the events to be played out by more than 650 athletes over the next few weeks in Vancouver.

• Sledge hockey: This is quite possibly the most popular winter Paralympic sport. Think typical ice hockey, but sitting down. The players sit on a sled and use a short stick that is curved on one end, and has sharp metal teeth on the other end. They'll dig those teeth into the ice in order to propel themselves up and down the rink. If there's only one spectacle you can check out during the Paralympics, I suggest it be sledge hockey.


• Alpine skiing: I've been sit-skiing before. In order to do it, I transferred into a specially-designed device, with a seat placed on top of a single large ski. I did it twice, both times on the bunny-hill of the local "mountain" in Suburban Detroit. I know, an oxymoron. Anyway, as I was escorted down the hill, I got up to approximately the speed of sound (or so it seemed). In reality, I was probably going the same speed as some 5-year-old kid next to me. In the Paralympics, it's a whole different ball-game. There is downhill, slalom, super-G: all the typical disciplines you find in the Olympics. And these athletes are flying down the hills. A cool thing about the Paralympics? There's a competition for sit-skiing, visually impaired skiers, and those with disabilities who can ski while standing.


• Wheelchair curling: If you thought stand-up curling was amazing (and it is!), wait til you see it played by those in chairs. Athletes can either throw the rocks themselves, or use what's known as a "delivery stick." This is just the second time wheelchair curling will be played at the Paralympics, and of course, the Canadians won the gold last time out. Do the Canadians ever get tired of winning curling medals?


• Biathlon/cross-country skiing: Much like alpine skiing, these events have medals awarded for those standing, sitting, and visually impaired. And much like the Olympics, there are about 10 bazillion different biathlons and cross-country races over the nine days of the Paralympics.

So there you have it. A quick peek at what to expect at the Winter Paralympic games. Now if we could only convince the execs at NBC that a quick peek is exactly what this country is looking for!

Why being in a wheelchair doesn't suck

Part Two in a weekly series.

Let's face it: there are a lot of times when being in a wheelchair sucks. You can't fully appreciate the magnificence of the Macarena, a pointy object in your wheel could send you home for the day, and you get a sore neck from looking up at people all the time.

But let's take a look at one of the most obvious, and overlooked, reasons why living in a wheelchair doesn't suck: it's much better than the alternative.

There's nothing we can do about our disabilities. Chris has Muscular Dystrophy, Dan has Spina bifida. End of story. Were it not for the incredible technology available to us, we wouldn't be able to enjoy the active life we do now. Were it not for our wheelchair, we quite simply would not be able to go anywhere. Think about it. Our legs don't work. And no amount of rehabilitation will make them work. If we want to participate in time with our families, go eat dinner in another room, or pace the floor without help, we need to use a wheelchair to help us. And there's no shame in that.

Which brings us to the ultimate irony of the entire thing. To many in the general public, a wheelchair is a sign of helplessness. But in reality, a wheelchair is the very tool that gives us the freedom to live life, and to do it the way we want to.

As far as we're concerned we would rather use wheelchairs than stay isolated inside. Everyone should know that we need to be let outside for playtime. Without our wonderful rolling devices, the only way for us to move would involve dragging ourselves down the sidewalk. We prefer to avoid unsightly scrapes, mud covered clothing, and the occasional footprint on our backs.

In all seriousness wheelchairs have allowed us to do many things that are integral to our lives. There would be no way to get to classes, work, doctors appointments, and the necessary trips to the store. We would never have made it to any Chicago, Detroit, or Northwestern sporting events in person. The experiences and views in this blog would never have been formulated so we could share them with our wonderful readers. That would just be sad.

We wonder why the occasional people we encounter decide to stare at us. Is it because we move around differently or that our vehicles are amazing and super cool? Maybe it's a little bit of both. Either way we have conditioned ourselves to save the energy required to worry about that.

Whether you require a light weight manual wheelchair (Dan) or a heavy duty power chair (Chris), it can plainly be said that we would rather use our exotic wheels than face a world without them.

Next week's topic: We get really awesome parking spots!

Birthday Boy!

Half of the team, here at Different Spokes, Derin and Dan, would like to wish our other half, Chris Sanchez (middle), a very happy 28th birthday today! We hope you have a terrific and joyful day and that the White Sox lose their opening game. 

Happy Birthday Chris!

More customer service horror stories...and lessons to learn

From reader comments and Facebook posts, it's clear that our recent experience at Jewel Osco was not an isolated incident. And it got us to thinking about other examples of customer service-gone bad. Just a few of the horror stories:

• Chilly Reception at Chili's: Most restaurants are great at accommodating customers with disabilities. To us, their philosophy is simple: They treat us just like any other customer. Unfortunately, it takes just one slip up or bad experience to create an impression that may last for years. While Chris was an undergraduate at Northwestern, he wandered into a Chili's with his personal assistant to grab some lunch. His PA had to make a phone call in the lobby, while Chris approached the hostess stand to ask for a table. The hostess ignored Chris for the entirety of the PA's phone call. Finally, the phone call ended, and the PA approached the hostess. At that point, she had an obvious look of relief and asked him how many people were in the party. It was clear that Chris had been over-looked and marginalized. That's not a good way to encourage a customer to return. For anyone that encounters a similar experience, it is important to realize that a power wheelchair does not imply that a person can't communicate. The best way to handle it would be to talk directly to any person with a disability, if they can't communicate back to you verbally, they will find a way to share with you what they need. Be it through themselves, their personal assistant, or through some other means. And it's common courtesy to treat all people like human beings.
  
  
• North-worst Airlines: Throughout high school, Dan played on a wheelchair basketball team that traveled across the country playing in tournaments. Most airlines were tremendous in handling the crunch of 15 wheelchair athletes, many of whom had more than one wheelchair. This grouping, unfortunately, does not include Northwest. During one infamous flight, the flight crew took about 30 minutes to load our entire team onto the plane. This wasn't too bad considering they had to help about 10 of us to our seat in an aisle chair (a chair with wheels that fits down the narrow airplane aisles, used to transfer people who have trouble walking to their seat).

However, once we were all situated on the plane, and the rest of the passengers were in their seats, the pilot came over the loudspeaker to give information. The first words out of his mouth were the following: "We apologize for any inconvenience, we have a group of quadriplegics on the flight." Nearly all of us gasped. There was so much wrong with those 14 words. First, maybe one or two of us on the team were actually quadriplegics. A quadriplegic is somebody who has some sort of impairment in all four limbs (a paraplegic has a disability affecting two limbs). We understand that some disabilities are difficult to differentiate from others, but it's best to never assume what a disability might be. Also, we had paid Northwest for the flight, and we should be given the proper respect and services that we paid for. A company should never apologize to others for providing assistance to their paying customers. Isn't it the job of flight attendants to attend to passengers on the flight??

While these examples are nearly a decade old, from time to time we still encounter similar experiences at stores, restaurants, movie theaters, etc. It seems as though a few simple lessons can help prevent these misunderstandings from becoming any more prevalent.

We'd love to hear your similar experiences...please share them!

Why Being in a Wheelchair Doesn't Suck

Part One in a weekly series.

Let's face it: there are a lot of times when being in a wheelchair sucks. You can't always stomp your foot when you're angry, you can't stand up for the 7th inning stretch at the White Sox/Tigers game, and you can't go to wheelchair birthday parties because there are no handicapped parking spots left. Many people focus solely on the negative aspects of having a disability. But constantly harping on the downers is no fun at all. So each week, we're going to examine one reason why it's nice to be wheeling around all day.

This week's positive: jumping the line or no lines at all. Growing up, Dan's friends used to always take him to Cedar Point with them (an amusement park in Northern Ohio) because customers who used a wheelchair didn't have to wait in line for rides. As an added benefit, amusement parks will allow you to stay on the ride twice instead of having to get off and wait in line again.

Amusement parks aren't the only place where a similar phenomenon exists. When Chris goes to White Sox games, he gets to avoid long box office lines. When he goes into the gate 4 handicapped entrance, there is a box office window specifically designated for people with disabilities, which rarely has any line at all. This gives you an advantage to get to your seats and snatch a freshly grilled hotdog before the first pitch.

Finally on a more historic note, at a high profile political rally in November of 2008, Dan and Derin jumped the line about 4 times with their own personal Secret Service escort, bypassing hundreds of thousands of people waiting in line (and got personal pat downs).

So it's easy to see, if you hate waiting in lines, become friends with someone using a wheelchair, and you may reap these benefits as well.

Next week's reason: it's better than the alternative.

Excuse me ma'am...I'm right here!

Derin, here, Dan's fiancee and Chris's favorite able-bodied Minnesotan. I've been with Dan for almost 6 years, and we often get the assumption that I'm a) his sister, or b) his personal aide. I have yet to give into the temptation to tell them that it's just my turn to let him out of the secret back room to see the real world.

So typical day, we headed to the grocery store, Dan is up at the cash register waiting to pay, and I'm still unloading the cart. Cashier leans all the way around the register to peer down the conveyor belt at me and ask if I have a preferred card, while Dan is sitting right in front of her. Dan looks right at her and hands her his preferred card. Guess those people at Jewel have caught on that people who use wheelchairs can't hold onto a piece of plastic the size of my pinky.

This seems to be a trend in our relationship. How many times has it happened to you?

What is Muscular Dystrophy?

By Chris

While Dan and I both use wheelchairs, it is obvious to tell we have differing physical abilities. Both of us have had disabilities since birth, but they are unique. I have Muscular Dystrophy and Dan has Spina Bifida. I have Duchenne Muscular Dystrophy (DMD) which is the most severe form of the disease. I was diagnosed after analysis of a muscle biopsy at the age of four. At the time life expectancy was predicted to be 14 years. At the time of this entry I am nearly 28 years old. That's right, almost exactly 2 times the predicted lifespan.

Duchenne Muscular Dystrophy occurs nearly entirely among the male population. People diagnosed with this disease lack the gene which produces dystrophin, a protein that is integral to keeping calcium inside muscle cells. Without calcium muscles cannot be maintained or developed. Eventually all muscles within the body are affected. Currently I am on medications for cardiac, pulmonary, and neurological symptoms. I also have a pacemaker defibrillator and a tracheostomy tube which is attached to a ventilator at night. I use a large power wheelchair with a tilt and recline seating system. I also have a personal care assistant who helps me with my personal care needs as I am very limited in what I can do for myself physically.

Muscular Dystrophy progresses over time. Up until the summer after I turned 11 years old I was able to walk. I always walked slower than other kids and cramped up much sooner, a typical situation for boys with Muscular Dystrophy who often walk only on the front part of their feet. Over time I have become weaker and weaker, but that's just the way it is.

If anybody observes the physical abilities of Dan and myself, the differences become obvious. Unlike me, Dan can push himself around in his manual wheelchair. He often climbs out of his wheelchair and around his apartment like some sort of trained chimpanzee. That's not meant as an insult, it's just the best way to describe his movement. I use battery power and need much more assistance to accomplish certain tasks. This has been a nonscientific description of a genetic disease. Feel free to send your questions. Non-doctor Chris signing off.

Does the disability logo need a makeover?

The current disability logo has become ingrained in us as a part of American culture. It's in every parking lot, on thousands of license plates, on any push-button, and outside every accessible restroom. But is it the best symbol for Americans to use to represent the disabled population?

First, lets look at the positives of the current logo:

• It's simple and easily recognizable: It's not a complicated design, and it's easily reproduced, making it easy to create signs, paint parking spots, etc. It's also very clear what the logo represents. It's a person in a wheelchair. There can be no confusion over that.
  
• There's little controversy regarding its use: From my past experience, there seems to be very little controversy surrounding the logo from within the disability rights movement. I've not once heard from somebody offended by its use.
  
• It's part of our culture: At this point, the current logo represents the Americans With Disabilities Act, and in general, disabilities of all types. We're used to it. As is everybody in most major developed nations, as most countries use a symbol that more or less resembles what's posted above.

Now, I would hesitate to call what I've written as a ringing endorsement. In fact, there are many things I dislike about the disability logo. The negatives:

• The logo is stiff and rigid: The person in the picture isn't moving, and can be interpreted as "just sitting there." While there are no handle bars on the back of the wheelchair, it seems as though this person would need the assistance of somebody else in order to do just about anything. This just feeds into the pervasive stereotype of individuals with disabilities: They are helpless, inactive, and always need assistance from others. Do we really want that as the "universal" symbol of accessibility?
• The logo is accepted nearly everywhere: As mentioned above, I've heard very few complaints about this logo, and in fact, had given it very little thought myself until recently. Does this mean the disability rights movement has accepted it as our logo?
  

What got me thinking about this post was a logo I saw on the doors of a store recently. The logo there looked a lot like the one at the right. It was simple, yet in the end, brilliant.

This logo (which I found at www.bushprisby.com) took the old one, and simply added arms in motion. That tiny addition makes an enormous difference:

• It shatters the helpless stereotype: The person in the new logo is propelling him or herself, without the need of any other assistance. It sends such a simple message. People in wheelchairs, in fact, can go shopping on their own, can park their cars on their own, can use an accessible restroom on their own.
  
• It's not stiff and rigid: As a generic symbol, it gets rid of the idea that an individual in a wheelchair sits in his or her chair all day waiting for something exciting to happen.
• It's starting to catch on. As I mentioned, I saw a similar logo to this outside of a store in suburban Chicago, while companies such as Inclusion Solutions already utilize this logo on their products.
• It's still similar to the old logo: A shift to the new-look logo would not cause whiplash within the general public. The colors and overall theme are the same. In fact, I would guess that a high percentage would not even notice the difference. So this would keep us in line with the "universal" symbol for disability while updating it for the realities of the 21st century.

After taking that all into account, I think it's time we re-examine our current disability logo and make some tweaks. A small step here can lead to a giant leap in the perception of those with disabilities...

The "cripple nod"

I'm sure all of you have experienced it at one time or another. In fact, I'm sure many of you have initiated it at one point. I'm guilty of it many times in the past. It's the moment when you're wheeling down the street and you encounter another person in a wheelchair. Invariably, he or she will either wave, nod, or acknowledge you in some way. Why? Because you're in a wheelchair too! I like to call this the "cripple nod."

Now, obviously, the "cripple nod" makes a lot of sense. If you're in a chair, you clearly share some of the same experiences as the other person. You've encountered the jerks who take handicapped parking spots from you, you've had to maneuver around curb cuts that are covered in snow and haven't been shoveled, etc. So you get it. And because you get it, you are somebody to acknowledge and perhaps befriend.

I hope it doesn't make me rude or a bad person, but I don't like this line of thinking. To me, the whole point of the Disability Rights movement is to fully integrate those with disabilities into the "able-bodied" community. This is why all buildings should be made accessible, all classrooms should have resources for the disabled, etc. Along those same lines, I just want to be treated like everyone else in the "able-bodied" community. Would you nod at me if I were just walking down the street by myself? Probably not. In that sense, I feel like some others with disabilities are unable to look past my disability. All they see is my wheelchair, and immediately they think they can trust me.

When Chris and I first met, Chris sent his personal assistant over to grab me because I was wearing a Tigers hat. He just wanted to talk baseball. It didn't matter that I was using a wheelchair. And in the grand scheme of things, that's what I want. I want somebody to acknowledge me because I did something nice for them. Or I'm wearing a the hat of their favorite team (or biggest rival). I don't want special recognition simply because I'm sitting down as I make my way down the street...