Saturday, February 4, 2012

Outspoken? No, But I'll Speak Out.

Sometimes, I'm shy and maybe even a little insecure. I stay away from uncomfortable conversations or choose to keep my mouth shut if I don't know how my words might be received.

Other times, I'm bold and have no problem explaining how I feel. This is especially easy for me if I know that I am speaking up and sharing the general opinion of a group. I can't even remember how many times I was the spokesperson for Cohort 80 during my Teaching Credential Program. The majority of the class would be muttering the same complaint, wondering the same question, privately disagreeing with the professor in the same way, and I would be the one to speak up and voice our concerns. If so many people agree in a particular way, someone aught to explain that aloud for the other party to understand, right?

I got to use my diplomatic speaking-up skills recently.

There's a woman in the world who is trying her best to do good and raise awareness of Juvenile Arthritis. It came to my attention that many parents of children with JA do not agree with this woman's methods. As I saw the concern of these JA Moms, I couldn't sit back and observe quietly. If SO many people feel this way, why hasn't anyone told her? Surely she'd listen to the voices of the people for whom she is advocating.

So, I spoke up and wrote my spiel. It was quite lovely. You can read it if you'd like:

    I'm grateful that you are taking an interest in raising awareness about JA, but I have to ask you something about a tweet you posted earlier today... Why are you unwilling to show the nasty side of this disease?
    It seems like a bit of a disservice to these children to only show the public the smiling, happy moments of their painful lives. Raising awareness of a disease means educating the public about the good and the bad. That includes the swollen joints, the difficult treatment, the trials of daily life, the sickness, hospital visits, drugs, pain and tears. Without the unpleasant treatments and medications, our kids wouldn't be able to smile and put on happy faces for the photos posted on this page or shown on t.v.
    I know that you suffered a lot in secret before your RA was controlled, but you've stated that you want to be open about arthritis now. Please consider the fact that hiding the ugly side of JA from the public is hiding the reality of JA. Putting a pretty face to JA masks the truth that JA is NOT a pretty disease.
    To really help these children, please consider showing the public what JA truly looks like. Do something selfless and use the proceeds of your book sales to donate to research and fight this disease. Stand up for these kids by helping the public see that they are NOT like regular children, but that they long to be.

(She responded and I responded right back. My words are below.)

   Thanks for explaining it a little bit more. I really do appreciate all the awareness that you are raising for these children. I know that it is making some difference, and that is wonderful, but I fear that it is an uneducated awareness that the public will gain.
    You know a lot more about the media than I do, so I appreciate your input on the matter. However, I notice that the media shows child cancer patients without hair. Children with MS are shown in wheelchairs. These images create a feeling of sympathy in others while showing the truth behind the diseases. I don't see why that wouldn't work for JA as well.
    I agree with you that we absolutely need to have a positive, hopeful attitude, but that doesn't mean that the difficulties need to be hidden. It's my opinion that adversity makes the bright points brighter. 

I think that turned out rather nicely, not catty or mean. Well, the lady didn't like it. She thought it was all rather negative and upsetting. She would prefer to show only the happy, smiling faces of children with JA. Okay. That is her choice and she is welcome to do it, but I hope she knows that she is doing so without the support of many JA Parents who want the reality of this disease to be known. 

What good does it do to bring awareness of a disease if that awareness does not educate and inform the public? 

First real haircut!
Here's my daughter looking cute. Lots of kids are cute though, but not lots of kids have autoimmune arthritis. This picture doesn't raise much awareness of the disease she fights.

Look at the one below. This is Juvenile Arthritis, diaper and all. I don't have any video of how she limped while her joints were this swollen, nor do I have video of how she cried in the mornings and leaned against the wall for support to stand. I wish I did.

Look at that knee at the onset of her JA.
Vitamins, Iron, Naproxen, Ranitidine, and Methotrexate
These are her meds before starting her second injectable drug. I don't have any photos of her actually getting her injections because the process requires all of the people in my household and leaves no one to take pictures. 

If you'd like to learn more autoimmune arthritis, search for blogs of other JA families. Go check out IAAM or the Arthritis Foundation. Want to show some support for my family, help us as we participate in the Arthritis Walk this Spring. Join Team Emma or make a donation.

Pretty pictures aren't really helping anyone learn anything. 

Okay, I'm getting off my soapbox now. 

1 comment:

  1. I don't understand people who don't understand reason. I am proud of you for speaking up. Perhaps sometimes soon, when her pride has been tempered, she will see the wisdom in your words. Good job Mama.