Well, it's been a little while again since my last post. This time I am blaming this on my marketing class which has made be write more essays and random shit than my english class haha. School has been going better. It's tough and still continues to push my limits but I take it day by day. I'm already on my 7th week because of it and I am almost finished with my 8 week marketing cram class. Then I will begin my 8 week advertising cram class shortly after. This system tends to work pretty good and allows me to only have to worry about 3 classes at a time instead of four. I just finished my first argument essay in english. I made it feel personal (as I do everything) and got a decent grade back. I'll include it in this post for those who are interested. My argument is something I've been wanting to write about for a long time so it worked out nicely. This week I have 2 quizzes and a final all due by tomorrow and monday, so that will be wonderful. At least my marketing class will be over for good! <--my little positive input haha.
Unfortunately, blogger won't let me just add an attachment to I'm going to have to copy and paste it (sorry).
Jade Sullivan
Keep It Confidential
If you were diagnosed with a chronic disease, would you want to see when you might die? Would you want this number displayed publicly on websites, TV, ads etc.? Even if you did, would it really benefit you at all by knowing this statistic? I was born with an illness called cystic fibrosis and when I was 10 years old, I googled my disease. As I was reading about it I saw an area that showed the life expectancy and how most people with CF will not live past their late thirties. I felt my stomach churn and my eyes flood with water until I could no longer see the screen. Nobody had ever told me when I was supposed to die and at 10 years old it should have been my choice whether or not I wanted to know the average age. Yet there it was, shouting the answer in my face when all I was looking for was basic knowledge. If it wasn’t for having a great uncle with CF, who is now 70 years old, I might have believed that this statistic involved my future. So now I’m going to argue that I think publicly posting the life expectancy for Cystic Fibrosis should be prohibited.
Something I hold onto each day and convinces me that I will not have the fate those statistics show is my great uncle Jim and my choices. Unlike many CF patients, I grew up homeschooled and have only been admitted for a hospital stay once in my lifetime, which is very rare. My point is that the life expectancy for every person with CF is different and therefore should not speak for all those who have it. Now I know many will argue that this statistic is only an average but average or not it’s a set number that the public doesn’t need to see. If you are a parent, doctor, etc. or you yourself really want to know that number, then it should absolutely be available to you and only you. I think it should be treated as something more confidential and private instead of so exposed. After all, this isn’t something to take lightly.
This leads me into a reason why publicly showing the lifespan leads into untrue assumptions. For example, you are having a party and Sally asks, “Why do you have to take pills before you eat?” You trust her and explain that you have cystic fibrosis but live a very normal and healthy life. She goes home and googles the disease to learn more and the first thing she sees is the life expectancy. Ever since that day, Sally has pitied you and refuses to believe that you are actually quite healthy and are not going to die at 39 years old. You now regret ever mentioning that you have CF. When people know little about a disease, they automatically make assumptions rather than hear your side of the story. This is one of the reasons why showing the lifespan so publically can be damaging. Should Sally have the right to know everything about CF? I mean, shouldn’t it be your choice how much she knows about your illness? Isn’t her viewing the life expectancy pushing it too far?
A big problem is that many websites and media publicizing the CF lifespan are outdated and inaccurate. The second problem is that this tends to go unnoticed. Suddenly, you think you’ve beaten the odds at only 20 years old because the lifespan says early teens. This was true, 20-30 years ago.
I just think showing an adult or child how long they should live without them asking first is crossing the line. It may not only defeat their hope, but also show them that they have no control over how long they will live, which is false information. Though it should be a choice whether you want to know or not, I just can’t figure out why anyone would want to know a life expectancy. What good can that really bring? Surely there must be a beneficial reason.
Countless times while on a website I have seen ads displayed for hundreds of different things. It wasn’t until I saw a cystic fibrosis ad that I took a second look. I had never seen this before because CF isn’t all that common and most people don’t know what it is. But there was something else that caught my eye and that’s what it said. There was a picture of a young boy and girl and it said, “Both were born with cystic fibrosis. Jena lost her battle at age 13. Eric is still fighting. DONATE NOW!” I was so disgusted with what I had just seen. It’s so degrading and disrespectful to those who live with the disease. How dare they tell a sympathy story to raise money. Displaying a child’s death is offensive and gives the wrong message. I have also seen ads showing the life expectancy as well. It is said that by showing the life span, people may feel more sympathetic and donate money to help the cause, therefore benefitting the Cystic Fibrosis Foundation. Yes, it’s great that the CF foundation is raising money and exposing awareness to many people but they are doing it in the wrong way. The ads should show an inspiring story about a child who is living a healthy life because of donations to CFF. What’s sad is that I think these ads will actually push a lot of people away.
Over the years, the life expectancy has gone up substantially from where it was decades ago and a big reason for that is because of research and new medication. It’s important to know how far research has come. Doctors and scientists especially need to know this information. It’s a great thing knowing that we have come this far in the medical world and by comparing the life spans it has shown great promise for the future. This is the only benefit I myself have seen. This achievement might be the only thing that would give a child hope from reading the life expectancy. I hope that by the time they really grow up, that age will have increased even more and there will be nothing to fear. I look forward to the day when CF patients die of old age and not from their disease. This way, there will be no reason to ever show a life expectancy again.
