Wednesday, December 19, 2012

Activism vs Idiocy

It is the holidays and it is time to be nice to each other and forgive each others' faults and all that good stuff right?

Ehhh...

Obviously the last couple of weeks have been hard on the rheum community after losing Laura. It has been a huge blow and a wake up call to a few of us as well. We are all at different stages of grief in dealing with her death and it is a constant process. Lately I have been in the anger stage. Forgive the following rant.

Sunday afternoon a company that I follow shared one of Laura's blog posts she had recently written about growing up with arthritis. I went ahead and shared the news about her passing and they responded in a very kind way, sending condolences to those of us who knew her.

What happened next took me back.

A so-called JA advocate used that platform to pimp out her own page without so much as even acknowledging Laura:
What a great idea. I am working to create awareness for JA at (group name withheld) on Facebook. Come join me.8
Why the 8? I have no idea. In my mind that was neither the time or place to share her page, to really in reality do shameless promotion of her own project.

Understandably I was a bit miffed at that and contacted this person. In condensed form, I essentially talked about how I was not sure if this was as a result of not really seeing the fact that she had died or just not caring to acknowledge it. I then went on for a bit about how it seems like once JA kids grow up, this person seems to stop caring about what they go through which seems to hinder the cause in my mind. I talked about how Laura was such a great JA advocate and that this self promotion disguised as advocacy was bothersome.

The following is her response:

Kristen,
I am so sad about this. First I have RA, have almost died from complications twice so I understand the seriousness of this disease. I am so sorry about your friend. This is NOT my reply, this is some automated or something. I personally try to answer each and every post. I donor self promote. My one and only goal is to help. I understand your anger, this post makes me angry. I apologize for the pain it has caused you. I work to help any and all with arthritis. The only reason I started the kids page was because people don't know kids get arthritis.
I am so sorry for your loss.

Clearly there is a misunderstanding in what I sent since she believes that I must have posted on her page. And automated something? The comment was sent from her cell phone. Are you kidding me?

I have a lot of issues with how this person handles things and I have for several months now. Many of us in the arthritis community felt that she would really help us when she isn't doing anything of real meaning or changing anything in reality.

First off, she refuses to show any negativity as she refers to it - apparently this means that we can show cute pictures of kids but we don't show any pictures of infusions, children in the hospital or in bed or doing their shots, or rashes or deformities. Apparently we are supposed to practice advocacy for children with JA but without showing any of what they go through... How the fuck does that make sense? The average person doesn't know what an enbrel pen or a 4 hour infusion look or feel like. They don't know what it's like to have more pills in your body than food many times and they definitely have no idea what it's like to endure hours and hours of pain doctors refuse to treat because they believe it is all in your head. They've never been called crazy, been accused of lying about their chronic condition, or been told to try all these natural treatments which for the majority of people in the world do jack shit.

She's constantly telling people to read her latest book, and for a while went on several shows to promote her book - JA was an afterthought in most of these interviews.

This same person blasted a facebook page (clearly created by kids trying to get Justin's attention) because she had the nativity to believe that it was somehow actually related to Justin Bieber (despite it clearly not being) and posted on it several times trying to get him to do a song or something to raise awareness about JA. The young girls (with JA mind you) felt very attacked and a parent had to come out and tell people to stop acting in such a foolish way towards these kids. This person is constantly reaching out to celebrities trying to get them to be spokespeople and at the same time ignoring those like Teri Hatcher who are noted for the amazing things that they do for the JA community. Heck, Vanessa Hudgens was just at a fundraiser for JA.

But why do we need a spokesperson anyway? Doesn't it seem that we know what we go through more? Why depend on other when we can get things done through grassroots organizing??

This person also used to have a career in fashion and has written many articles on how to be fashionable with RA. One such article included a bit about how when you are not feeling well due to RA you should get ready and go to the store to buy new lipstick because IT WILL HELP YOU FEEL BETTER.

WHAT?!

When my face is swollen like a sumo wrestler or I can barely walk to the bathroom, going to the store to get makeup is not a priority - and it definitely isn't going to make me feel any better.

I figured what the fuck, I'll just bring up (most of) these issues and see what she says. Her response:
I am sorry you think so poorly of my work. You seem to think that I am all about promoting myself. That is the exact opposite. I am not going to address all of your issues with me because there are so many that it seems you don't understand what I am trying to achieve. Talking about arthritis has damaged my tv career which I knew it would. But my passion is the kids. I refuse to be negative. Hope kept me going with RA and that is what I offer for many. I am sorry you don't agree. I understand it is impossible to please everyone but the good feedback and the hope from my sm friends tells me that it's working for the kids. That makes me so happy. Kids deserve a childhood.
Kids deserve a childhood - they do. She seems to have forgotten my background, like she does with just about everyone she speaks to. I reminded her what I have gone through being ill for 19 years and that I know better than her definitely what issues face these kids - what they worry about, how tough fitting in gets, dealing with assholes docs, etc, etc. I brought up that I never have been able to pursue teaching, the career I studied for and am now $80,000 in debt over because Arthur forced me to quit graduate school. I work a dead end job and most likely will until I can't work anymore.

Through all of this, she still never gave me a real answer on what I had messaged her in the first place about. She has gone on to write petty indirect things about how it is so sad when people use their energy for being mean and hurtful. Honey, you're 50+ and worked in show biz. I think you can handle it. And I think you could at least give me an honest answer about still refusing to acknowledge really the Laura situation or what happened there. I'll be waiting when you figure out a lie good enough to believe.

Here's the deal with all this - many of us in the arthritis community specifically focusing most of our time on juvenile arthritis thought this person was going to be our Moses. We thought she would lead us out of the desert and into the promised land where Dr Oz, Oprah, Dr Phil, Anderson, Ellen, and other people would help the public understand juvenile arthritis and in doing so all kinds of arthritis. We thought that she would change everything as she had basically promised us to do. Instead, we are left with a woman who constantly uses the status quo to 'raise awareness' and take in the benefits from emotionally worn out parents.

More people in the world need to act like Teri Hatcher. She gives money and hosts fundraisers to raise awareness of arthritis especially in children. She doesn't care that the whole world doesn't know she does it - she does it because it is the right thing to do and it helps. I don't do what I do to get recognition for it. I do what I do because it is important and I very much wish that someone back in 1993 had something like this to help me and my family to deal with this condition that my sister and I live with every day. I do it to connect with families like the Stacey's and Mia's and with wonderful people who have been another family to me like Heather and Sari and more. There are so many wonderful people that I have met and we have all had such an amazing impact on each other. I am so grateful to be able to have these people in my life and for us all to be working together to raise awareness. It may be a slower process than we'd like but we are doing something that actually impacts the world - and that's more than I can say for a lot of people.

2 comments:

  1. There is a way to be truthful and reveal the immense suffering of children with types of autoimmune arthritis without being negative. You can show others the ugly parts of this disease without being a downer, but it's a skill that takes time to master. Finding that balance is so important though and makes advocacy infinitely more powerful. Advocacy, especially with autoimmune arthritis, without the ugly parts of the diseases is futile. You don't see cancer advocates hiding the ugly/difficult/"negative" parts of that disease, and for good reason: it's a serious disease. It's not negativity, it's LIFE for these patients.

    You can show photos of infusions, surgical recoveries, photos of hospital admissions, and still be positive and provide a positive space for patients. Case in point: my second photo after my last surgery was giving a thumbs up sign despite tubes, arterial lines and an NG-tube. Negative? I don't think so.

    That and if advocates keep calling these systemic diseases by the A-word alone ("Arthritis"), we are never going to make sufficient progress. Autoimmune has to be a part of the name somewhere along the line. It makes me want to just slam my head against a wall when I hear patients/advocates call their systemic autoimmune arthritis as "arthritis."


    I have been working on a post about balancing positive & negativity in rheum advocacy work-- would you like to collaborate or be a part of it? I would love to include you, quote, or interview you. Will email you with details, tweet me if you have an interest.

    Don't feel the need to be forgiven for a rant. Thank you for being you, Kirsten. Your transparency is always appreciated.


    Love & virtual spoons as always,

    Emily (CC)

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  2. Dear sweet Kirsten, this is why I love you :) Cut through the bullsh*t (excuse my french), JIA doesn't need glitz and glam, it doesn't need a book deal, it doesn't need a self centered celebrity spokesperson. It needs AWARENESS, it needs a CURE. If we don't show the real nitty gritty of this disease how are people supposed to know that our children are suffering? Our friends and family are suffering?

    Don't ever apologize for speaking up. As Mia's mom I can only say so much about how the disease affects Mia, until she can communicate you are her voice. Thank you

    Megan and Mia

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