Thursday, April 29, 2010

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.

Friday, April 23, 2010

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!

Monday, April 19, 2010

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.

      Friday, April 16, 2010

      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!

      Thursday, April 8, 2010

      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.

      Monday, April 5, 2010

      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...

      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.

      Thursday, April 1, 2010

      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.