What Are You Staring at?: Small Voices For a New Generation

Hello everyone,

A lot of people talk about the technological advances being made in an effort to help people live more independently as a productive citizens of the USA. Some simply view these advances as just another useful tool helping them to get through another difficult day with a disability; whereas, others view this technology as in "opening to a whole new world". Either way, people view technology, I think we are missing out on a fundamental truth.

What is that truth?

Change begins from within..


To put it more simply, change begins with me. Or anyone that is, wanting to make a difference in this world. I may have written about this topic once or twice before, but I think it's worthwhile mentioning again. (Note: Although from now on, I think I am going to start using the labels to make sure I don't end up repeating myself over and over again! LOL..) Anyway, this point was reiterated to me again through a unique Nick News Special called What Are You Staring at? The show featured a panel of outspoken people (both young and old) living with the a variety of disabilities. In this 30 minute panel discussion, the group attempts to answer some difficult questions. Some of the questions centered around the age-old dilemma To Help or not to Help: when does the line stop? as well as when exactly is the appropriate time for questions. The panel is also joined by well-known disability advocates John Hockenberry and Christopher Reeve (1952-2004). Although this program is over five years ago, I think there are many important lessons that still can be heard through the voices of these wise young children.

In order to save time, I will attempt to consolidate the most poignant answers to all these issues. The first being, is it appropriate to stare at someone because they are different.
The obvious answer is no. But here's why.. Christopher Reeve put it best when he said, " No matter what kind of condition you're in, we're all part of a big family and we only become strangers when we look away." He continues, "There is no reason for us to be strangers."

The debate over whether to help someone with a disability has also brought controversy. In my case, I can often understand why. Usually disabled people want to have the opportunity to try to accomplish things on their own before finally asking for help. However, it is not impolite to ask if they need your assistance in any way. Danielle who has CP and is also blind explains, "if I am struggling and if the door is really heavy, mainly out of common courtesy, most people open the door."

Why is the response so little?

Hockenberry says it is most often fear that holds people back. He says people are often afraid they will be judged by their offer to help "as if if they say or do the wrong thing, I'm going to whip some 911 and get the disability police to come." He goes on to explain that a person's experiences and personality should be the first thing that people see when looking at someone with a disability.

Christopher Reeve adds that people should not shy away from possible awkward experiences just because someone is disabled. Take for example the simple act of shaking hands. "I'm not offended by that at all because it's just a habit that they want to greet me. Anything that comes from a legitimate motivation to make contact is great," Reeve said.

Where does this fear come from? It can come from a variety of sources.. Sometimes even family members. "I think a lot of the time, parents, adults don't know, so they keep their children from learning.. because they don't know and they 're scared," said Danielle

To ask is always a better thing to do.

Let's take a look back at the history of disabled people as well as efforts to ensure the rights of the disabled, shall we?

Originally, the disabled population was considered second rate in the United States. In fact, before 1975, there were no laws protecting the rights and freedoms of the disabled. The truth is, ensuring our rights is still sometimes difficult. In 1975, Congress passed the individuals with Disabilities Act. This law guarantees that all children, no matter what their physical or mental limitations have access to a free and public education. This includes any special equipment needed to encourage the learning process. But what about when you become an adult and start looking for a job? This is where the American With Disabilities come into play. This law ensures that people with disabilities have the same rights as someone else. Building accessibility is just one of the major issues discussed in this law.

In general, the theme of the show was patience and persistence during any difficult time. Here are just some of my favorite quotes from some wise youngsters.

Daneille: "We can do anything that anyone else can do. We just do it differently."

Jon: "What I've got is what I've got and I think it's much more interesting for me to make the most out of what I have been to think about something that may be possible sometime in the far future."

Danielle: "You look at what you can do. You don't dwell on what you can't do."

Christopher Reeve: "Whatever happens, you gotta press forward and not just say oh well this is the end. It's never the end, you've gotta move forward,"

I think it is about time as the host said, to focus more on what we can do and what we can't.

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Citation for TV Program: "What Are You Staring at? , Nickelodeon channel 59 Detroit, at 6 a.m. , September 26, 2007. (Original air date: September 6, 2001)

Surgery or not?

Welcome back everyone,

Okay, so I know it's been a few days since I last posted. But this time I have a very good and reasonable excuse. (Chuckle). I have been recovering from surgery. If you are disabled, you most likely know the routine. Doctors come to you with a possible treatment or surgery in a effort to make you more independent or the least bit manageable. In my case, I've been lucky to have positive responses to many of those surgeries. Having cerebral palsy or any kind of chronic pain, you may already be familiar with the medicine baclofen. Baclofen is a muscle relaxant, which blocks the messages and makes relaxing easier. Taking this idea a step further, patients can opt for the baclofen pump. Although more intense, patients usually find the pump to have more of a impact. There are several steps patients may go through before finally deciding to install the baclofen pump.

First and most importantly is the baclofen trial. During the trial, patients endure a spinal tap. This allows doctors as well patients to see a greater impact when the drug is introduced directly into the spinal fluid. Measurements are taken in terms of how flexible or relaxed they are, in order to determine whether this would be a affective course of treatment. It is important to note that the oral doses of the drug are not always as effective as the intrathecal kind. That is because more of the drug can be blocked in order to protect the brain; whereas, less can be blocked when introduced through the spinal fluid. Individual results can vary, but after that, a decision is often made.

There are several other factors to keep in mind while determining whether the baclofen pump is for you. I will briefly go through some of them, but like I said, my blog is not the see all and end all of your resources. Do your own research.. You know your own body better than anyone.

Things to keep in mind..

1. There are side effects to every drug.

2. There are two different available pump sizes. In most cases, doctors prefer to use the larger size. This just means less time in Dr.'s offices. It is a plus for anyone.

3. This is a lifetime commitment. Although the positives outweigh the negatives in most cases, patients must realize what they are getting into. The pump has to be replaced at some point or another. In my case, it's every 10 years.

That's all for now. I would encourage you to do more research on the pump is this post has peaked your interest. Here are some places to start:

http://www.medtronic.com/physician/itb/index.html

http://www.neurosurg.wisc.edu/pedbaclf.html

http://www.spineuniverse.com/displayarticle.php/article228.html

http://www.medtronic.com/servlet/ContentServer?pagename=Medtronic/Website/ConditionStage&ConditionName=Severe+Spasticity&Stage=Management

A Note to All My Readers; plus my view on resilience

Hello everyone,

Okay, so I realize it's been FOREVER since I’ve posted on this blog. Let's just say I have been using the time for self-evaluation and improvement. God knows, I have only begun on this journey and continue to seek personal as well as emotional growth. I have a long way to go, but I'm getting there. In truth, there is only one thing that kept me from writing in this blog.. That one thing being fear. As I have tried to explain many times in past posts, the goal of this blog is to provide positive feedback and advice to those dealing what a disability. This not only includes people that live with disabilities themselves. But just about anyone, including the family members or friends of a disabled person. That being said, I felt it was my responsibility to uphold this positive spirit; Which up until recently, I didn't know whether I could do that.


To be honest, I'm not really sure if I should be writing this at all. But I figure that the best way to conquer my fear is to work through it. After all, nobody is perfect. Even though, I may be having difficulties in my personal life doesn't mean I can't take some of the advice I think important I've learned from other people and pass it on. That being said, I may stay away from the topics of a personal nature for a while. I ask just one thing of my readers during this time. Be patient with me as you have been. This transition from college life to the "real world" has been a very difficult one. More difficult than I ever imagined. Still, this summer I was blessed with many once in a lifetime opportunities, such as going on a cruise and going to Hawaii. Don't worry, the cruise and Hawaii may end up being topics for later posts.


Anyway, the topic for today's post is resiliency. This topic, or a version of it, has been on my mind for a while now. For obvious reasons. How do people cope with adversity? How does this adversity change people? For the better or for worse.. In a effort to answer the question, I will attempt to discuss the many different aspects of adversity. Take for example the motivational speech made by Amy Roloff to Central Michigan University on TLC's Little People, Big World. In it, Amy makes several good points.

They are:

• · Leaving the comfort of home to go to college. How was everyone going to act towards her having a disability? · What were they going to think about her being a little person?


• Her Initial reaction was different than Amy expected. It didn't matter.


• Amy said, "I perhaps made more of an issue [of my difference] than others really did."


• The thing about a difference is that you think you are the only person going through it. Sure, you can think as a limitation, but Amy suggests that you embrace the difference.


• Look at the positives.


• Learn to move on after disappointments


• · The Main Point: "yes, I'm different. But we're all different. Once we move past that, we have a lot more similarities than we do differences."
  · As humans, we focus too much on the appearance of people rather than the inside, the soul and heart of person. It's more important that we get to know people from the inside out first.


• "God doesn't make mistakes. I believe we are all here for a purpose and it's up to us to determine what that purpose is."-Amy
  

Seems like I am not the only one wondering how to deal with the trials and tribulations of life. The topic of the most recent disability blog Carnival: Resiliency. I spent most of the day reading the posts and found it very informative as well as inspirational. For that reason, I have included the link here:

http://jodireimer.blogspot.com/2007/09/disability-blog-carnival-22-resilience.html

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Citation for TV Program: "Amy's College Homecoming "TLC channel 70 at 11 am, 9/3/2007