Stepford Crazies

Living in Awesometown

October 22, 2013 by Queen of Spain 23 Comments

I am sure it will come as a surprise to absolutely no one that I’d love to run for public office some day. It was always on the bucket list but life threw some curve balls at me that didn’t exactly fit into my career plans and well…here we are.

Recently a school board position became unexpectedly open and I briefly considered throwing my hat in the ring. Briefly because once sanity hit, and the usual pain I wake up with, along with my grueling treatment schedule and basically just juggling trying to stay alive…the husband and I figured maybe this wasn’t the best time to add the stress of trying to care for the educational welfare of the valley’s kids.

I also had to think about the type of person I would want on the school board and currently *I* didn’t fit my own criteria. I wasn’t attending meetings due to my health, I wasn’t interacting with as many school administrators as I’d like, nor was I up to speed as much as I’d like on the budget or ‘common core’ or new building concerns. Sure, I was way ahead of the average parent, but that wasn’t and isn’t good enough.

Granted I’d been reading everything I could get my hands on, even old meeting notes from years and years ago. Yet still, I knew I wasn’t ready. I expect a lot of our elected officials. Which brings me to another issue I had trouble with- this would be an appointment, not an election. Something that also didn’t sit right with me.

I also had this nagging feeling that while I was being as partisan as possible since becoming disabled, I had very little right to throw myself into a position that required as much nonpartisanship as one could muster while maintaining their sense of self.

For those who are unaware I spent my early career completely nonpartisan as a traditional journalist. No one would have ever have known how I felt, voted, or leaned on any given story I ever anchored, reported, or wrote. Six Golden Mics testify to that fact and I am very proud of them.

When I left that world for blogging, I had a hard time transitioning and went from screaming my opinion to whispering it to finally finding my voice.

As it turns out, I found it just in time to stifle it again in order to take the helm of running 2008 election coverage which required me to work with both side of the aisle and every candidate on the Presidential ticket. That required me to build bridges with the RNC and the beyond which resulted in, what I am very proud to say, was stellar coverage that went far beyond election day and into the health care battle where I worked to connect women bloggers with legislators intimately. If you wanted to ask then Speaker Pelosi a question, I made that happen. If you wanted to talk to Congresswoman McMorris Rodgers, I made that happen. That was my job and I was damn good at it- and damn good at making sure that same balance of voices-left, right, center-were heard on the site as well. Do you have any idea how hard it was to manage those who shall remain name-less (but feel free to go look them up) who went on to write for Breitbart, Huffington Post, Townhall, etc. all on in one political section? I should have gotten hazard pay…and I’ll leave it at that.

So as I sat thinking about running for a nonpartisan position, I just couldn’t help but think, ethically, now wasn’t the time. Nope. I’d have to spend more time working on getting through this Affordable Care Act battle, the many LGBT battles, including the current one in our schools that thankfully the Governor took action and signed into law, among many other things before I was ready to take on a position that required me to represent a district with some diversity. I say ‘some’ because let’s face it, the Santa Clarita Valley still has a ways to go when it comes to the whole ‘white flight’ bedroom community. We’re getting better. The demo is changing. But we’re not exactly there yet. And I have too many important battles I believe need my voice on this side right now, where I am making a difference.

Now of course I would run on an agenda, and that agenda would lean left. However I firmly believe that once you are elected you are representing everyone in your district. It’s one of the things I admire most about President Obama, and one of the things that drives me the most insane about him. I wish he’d only govern with Progressives in mind, but he doesn’t. He governs with the entire country in mind. Something I would hope to do if ever elected to office. Do his policies lean left? Yes. But does he make an effort to bring everyone to the table and even include solutions from the other side…always. (And as I see conservative heads exploding as they read that…I will give you one example just to get you going: that mandate you hate so much in Obamacare? It was compromise starting point from the President to make conservatives happy because it came directly from the Heritage Foundation and Romneycare. It was the HERITAGE MANDATE, just saying…)

So where is all this going you’re wondering? Well I’ve been meddling on Facebook in some local groups. Mostly because I was following some local reporters and some friends, which lead me to mingling with local elected officials.

Currently the President of the Hart District is Joe Messina. He actually has a right-wing, radio talk show in which he regularly features people like Brad Dacus of the Pacific Justice Institute (labeled a hate group by the Southern Poverty Law Center) and apparently this week he’s talking to Newt Gingrich’s wife. I can’t make this stuff up. And I can’t imagine what a student who even slightly pays attention to the board must think.

I bet the LGBT students of the Hart district must really get all warm and fuzzy when they read the President’s blog and it says (and for context- he’s speaking about a study he fails to link to claiming adolescence lasts longer and for argument’s sake pretending he agrees with the findings), “Why do we let, 7, 9, or 15 year olds decide they are gay, lesbian, or transgender? How do they make that kind of life-altering decision when their brain, according to the experts, isn’t capable of making that decision yet…If “children” ages 18 through 25 do not have sufficient brain development to make career decisions and live independently, how can children younger than that make life-altering decisions regarding sexual orientation and abortion? I doubt there’s enough “science” to explain that one to me!”

The President. Of our school board. This is what he does when he’s not looking out for my kids…he’s on the air acting like he’s the next Rush or Beck and railing against bathrooms being accessed by transgendered youth and he writes things like:

“…A New Hampshire high school graduate and boot camp graduate was barred from wearing his Marine Corps uniform in lieu of the traditional cap and gown. The young man had worked hard to make sure he had his credits done in time to leave early to go to boot camp, pass boot camp and get back for graduation. The school board, in my opinion, made a terrible mistake not allowing him to do so. No reward for his hard work. However, if he was a transvestite, would they have allowed him to dress as a woman, wear the female gown, wig, high heels, and so on? I have seen some graduations where the rainbow colors were worn as a scarf or the gown itself. And this is Equality? How?…It seems that equality is what some people (usually those on the political left) deem it to be and everyone else can, well, go pound sand!”

So you can imagine Messina and I don’t exactly see eye to eye on…well… anything. Awhile back I attempted to meet with him over tea and coffee to discuss the divisiveness I saw coming from his role as a pundit and board President and attempted to offer solutions. He was cordial. I was cordial. I made him promise to think of ALL the kids in his district when moving forward, he agreed.

Months later, I not only feel were my solutions entirely ignored but I now feel they are openly mocked. But he’s a white, Christian, Republican in a Buck McKeon town…he knows he has the advantage. Plus, everyone talks about how they just love him. Yup, they say…oh no matter what hateful rhetoric he spews on his daily show he’s such a nice guy and he really votes in the best interests of our kids, Erin! I mean, we can forgive him for being so passionate about what he believes because he gives so much time and energy on the board to the kids.

Yup. All for the kids. Please, take a look at his radio show’s Facebook page too. It’s ok, it’s all for the kids and he’s really a nice guy. Notice it has a No Bullying sign on the top. The irony, it burns.

As a parent in the district and as a someone looking to be healthy enough to one day run for office I just couldn’t let go a recent back and forth where he also took to Facebook to write things about me that are not true. Now, I get into political debates with people all over the web all the time. You have all seen me do this on twitter, on facebook, on my blog…but I can’t say I’ve ever gotten into it with the President of my local school board who then went on to lie about me.

Messina said, and I quote: “Erin – We can do this all day, you find one, ill find one, and so on.. Your rant about how Atheists are smarter than people of faith left out a lot about the ONE article you looked at and how the ATHEISTS who wrote it came to that conclusion. Yup you would make a good trustee with your very open, fair and warm support of all people.”

Now let me make something clear here. There is no ‘rant’ by me about how atheists are smarter than people of faith.

There is a facebook post in where I post a study and I ask the question if the study is ‘junk science’ and a debate takes places, by and large without me as I was dealing with two kids home from school that day. Feel free to read and take a look.

At any point in that thread do I pass any judgement on atheists or religious folk? Do I rant? Do I draw any conclusions other than to lean towards it being junk science?

That is, IF that is what Mr. Messina is referring to…because he then, oddly, accuses me of yet another lie: “…Your blog shows you believe that people of faith have a lower IQ than those who don’t, does that mean you have pity on the kids in school that believe in God? Should they have “SPECIAL” classes to help them out, Why? or Why not?…”

I asked Messina to show me where not only this so called ‘rant’ took place but to also please show me where I have ever said anything like this on my blog or ANY blog I have EVER written for, and I gave him a list from MOMOcrats to BlogHer and beyond. Just in case he wasn’t familiar with all the place I write on the web.

No answer as of yet on the Facebook thread. I have screen shots of the entire conversation which includes much, much more… like the President of the Hart School Board’s solution to the transgender bathroom issue being to put pictures of genitalia on the bathroom/locker room doors and if you match the genitalia, that is where you should enter. When I protested that this would ‘out’ the student his response was “ERIN – Outs the student, doesnt the STUDENT get OUTED when his PENIS is hanging out in the girls locker room.. Try Again!”

…and I’m the one sarcastically being told I would make such a good trustee with my very open, fair and warm support of all people.

Maybe he’s right though and the sarcasm is warranted. Because I really don’t have an open or fair mind when it comes to bullies. A sad point to have to bring up for someone in charge of leading our children. Also for someone who is ‘buddies’ with the aforementioned Dacus who has launched an all out campaign against anti-bullying programs.*

Luckily I won’t be bullied into giving up my aspirations for running for office and certainly not by someone who lies about me. I mean seriously, there are ENOUGH real and totally worthy POLICY issues we disagree on that he could have his pick from, why make something up?

There is no making sense of the senseless, I guess.

I do, however, expect more from the President of my local school board. Back up your claims about me or apologize for lying, retract your statements, and move on. My body may not be ready for a campaign but my mind is already in the fight. And I won’t be the victim of a pre-emptive strike by someone who attacks me with lies simply because he doesn’t like my politics. I don’t like your politics, Mr. Messina, but I’m certainly not going to lie about you to locals in the hopes of what? Turns votes my way in the event we ever run against each other? Sorry, I don’t play that dirty political game.

Luckily the politics in Santa Clarita Valley are changing and I will be less alone as a progressive looking out for everyone in the Valley, not just the status quo.

*I would also like to note all of my claims are backed up with linked sources, something Mr. Messina has yet to do on his blog posts or his facebook posts.

Filed Under: #suckit, Stepford Crazies

An Open Letter to Judge Judy Sheindlin

October 16, 2013 by Queen of Spain 60 Comments

Your Honor,

I just watched your interview on Fox News which aired on October 11, 2013. You also mentioned you don’t read negative mail, so my guess is you may never see this…however my hope is that many will be educated regardless.

First of all my love goes out to your daughter-in-law with Lupus. As you rightly stated, some days I’m sure she can get out of bed and go about her day and others it’s debilitating.

Debilitating was the word you used, not me.

Then you went on to say how (and I’m paraphrasing) we’ve created a society where drug addicts and those with bad backs and those like your daughter-in-law are told ‘not to worry, if you can’t take of yourself we’ll take care of you.’

Apparently in the world of personal responsibility and your new book that you are shilling, you think the government shouldn’t be helping those with debilitating auto-immune disorders. Ones they didn’t ask for, nor did they contract by some irresponsible action of their own.

As someone with a family member with Lupus I would hope that you would be better educated on exactly how it works, but by the way you spoke on television I was unclear. Especially considering you seemed to think Lupus was not a disorder that could possibly render one disabled to the point of needing government assistance. This may be the case for your daughter-in-law. It may be the case for many others with Lupus in varying degrees. However, Lupus is a killer and as you said, debilitating.

It destroys organs.

It causes organ failure.

It causes strokes.

It attacks your own body and causes so much pain you can not get out of bed, shampoo your own hair, or even tie your own shoes.

But here is the real kicker: Lupus is different for everyone. It does not attack one body the same way, because hey…we are all different.

From the Lupus Foundation of America:

Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years.

In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”) and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

In my own body, Lupus is currently attacking my blood vessels causing them to be inflamed. As you can imagine this causes much pain from head to toe. We also just found out I have the beginning stages of glaucoma thanks to Lupus. Previously Lupus has caused me to have a stroke, two TIAs, lose my gallbladder, lose part of my colon, lose my uterus, my ovaries, and my cervix.

I undergo bi-weekly treatment via IV infusions three days a week, for 4-6 hours per day. Those are on the weeks I’m just getting my ‘regular’ treatment. Every four months or so I get two extra treatments of a super powerful drug via another IV infusion.

I am on powerful steroids and many other medications that have serious side effects. Some days I’m not sure which is worse, the disorder or the treatment.

As you can imagine, this doesn’t exactly make it easy to work. Which is why I am thankful that in our country, when I was capable of working, I paid into social security as well as private insurance disability benefits. I thought that was also called personal responsibility. According to you, though, I’m avoiding personal responsibility.

I worked as hard as I could for as long as I could, making sure we had savings, and even reaching out to family for help. Then medical debt took over and now we’re doing what many Americans do: paying our bills, living paycheck to paycheck, and thanking all the deities for Obamacare (which as you correctly noted is law) as it will help my family get through this rough time. As someone who makes millions per year and was named to Forbe’s list of highest paid entertainers, I don’t expect you to understand the needs to the average American family. I do, however, expect you to retain compassion regardless of the size of your bank account.

Now I’m not exactly sure why you felt the need to single out Lupus patients as being irresponsible for their disability simply because they follow the law and take out the money they put into these government programs. Lupus patients are already stigmatized enough as it is with so little money having been put into research and educating the public on the pain and suffering we experience.

Our pain is real. Our suffering is real. You are welcome to see my brain MRI showing the stroke, the doctor’s notes and files regarding the inflammation so pervasive in my pelvis the doctor couldn’t believe anything was left and most of all, I’d love for you to talk to my family. Please, sit down with my children, my husband and hear from them the toll it’s taken.

Just as you don’t want to ‘pay for my kids’ I certainly do not want to be sick and out of work. It’s the LAST place anyone with Lupus wishes to be. Shame on you for insinuating we are mere moochers or freeloaders not taking responsibility for ourselves.

I’d give anything to be back at work and healthy. I’d give anything to have my organs inside my body and my brain functioning as it was before the stroke. Lupus is no joke and those with Lupus deserve your praise, not your scorn. We wake up every morning and fight to live. We fight against the odds. I know Lupus patients who are heroes.

As someone who is sworn to uphold the law perhaps you have seen only the law breakers from your bench. Perhaps you have spent so many years handing down sentences to those who try and take advantage of the law that you have forgotten the majority of people are not looking to lie, cheat, and steal their way through life.

Some are just simply hoping to live.

I’m glad there is a safety net for citizens of this great country and I believe we are a great country because we can provide that safety net. You may not like your tax dollars going to me or my family, but I don’t like my tax dollars going to wars I don’t agree with. It is a give and take. I, for one, am much happier giving to those in need.

And let me be clear: those with Lupus may truly be in need. The next time I can’t get out of bed, I will think of you and how you said I was undeserving. The next time yet another doctor gives me yet another diagnosis (last week it was glaucoma) caused by Lupus I will think of you, and how you said I was undeserving. The next time I’m in the hospital by doctor’s orders even though I want nothing more than to go home and be with my family, I will think of you and how you said I was undeserving.

Please educate yourself further on Lupus and perhaps offer your daughter-in-law even more help on those bad days when she can’t manage. Because we hope you never know the pain she and I are feeling on those days and how we’d love nothing more than to be at work instead.

In the meantime, I will proudly collect the disability I worked hard to contribute to and I will proudly stand up for Lupus patients – all 1.5 million of us in the US alone – as they collect their checks as well. Because as you said ‘not to worry, if you can’t take of yourself we’ll take care of you.’

I don’t want Lupus patients to worry and I WILL help take care of them. THAT is the mark of an incredible nation that puts its people first.

Sincerely,

Erin Kotecki Vest

There is a Move On Petition asking Judge Judy to apologize for her remarks regarding Lupus.

Filed Under: #suckit, #SUCKITLupus, Stepford Crazies

Because Sometimes You Just Need to Get Goofy

October 7, 2013 by Queen of Spain Leave a Comment

Maybe it’s the government shut down. Maybe it’s my raging anger at the GOP. Maybe the pain from Lupus has finally caught up with my brain and sent me over the edge…

Whatever the reason, it’s time I kept my rants and health advocacy and politics and how that all ties into parenting right here on this blog and launch another for something a bit more…Magical.

You will find something entirely different from what you usually read here and a place where I can keep a smile on my face instead of wanting to scream and pull all of my hair out over gridlock in DC and teaching my children how to behave better than politicians.

Come visit As Dreamers Do.

Filed Under: Feeling YaYa, Stepford Crazies

Can Anyone Save The House GOP?

October 1, 2013 by Queen of Spain 4 Comments

You saved us.

That’s what my son told White House staff gathered around the table as he sat on my lap.

No really, you saved us.

My son, who hadn’t said a word for nearly the entire meeting, even though he had confided in me he really wanted to tell them all about how his Mom has Lupus and how great it was they were helping more people get treatment and medicine and see doctors.

Thank you for saving us.

My son, sitting on my lap in the West Wing, his little sister by his side. Both having devoured packages of White House m&m’s just minutes prior, had the entire room welling up with just those words.

It is all I can think of now as I watch the news and I see these men and women who call themselves representatives of the people. All I can think of is my son, in his suit bought just for the occasion, driving home the importance of Obamacare in a way only the innocence of a chid can.

The Affordable Care Act is a law passed by Congress, signed by the President, held up by the Supreme Court, and even fought over during the 2012 election where President Obama, once again, came out on top. Yet still, these men and women who call themselves patriots have rather unpatriotically brought the fight back up again, refusing to accept their defeat and refusing to understand that right now people can go to HealthCare.gov and enroll in an insurance plan.

They shut down the government yet stopped nothing.

Right now I’m looking at my husband’s paycheck to see exactly what gets taken out to pay for my astronomical medical care and I’m comparison shopping at HealthCare.gov – considering our family’s options and what is best for us. There is an Anthem Blue Cross plan that pays 90/10 instead of the current 80/20 we have with Aetna. There is a HealthNet plan that covers my very expensive treatments with copays instead of the huge deductible I pay every January now. Lots of things to look over and consider that potentially could save us even more money.

I say even more money because ObamaCare has already brought us help. People don’t understand the benefits yet, and that’s really what this fight is all about. You’ve seen my bills. I’ve tweeted them time and time again and explained how our family has used ACA already. But what about you? Sally Kohn wrote a great piece for you- Five Reasons Why Americans Already Love ObamaCare. Did you know those things?

Listen, you may not like that 48 million Americans now have access to health care. You may not like that they can shop and insurance companies can compete for their business. You many not like that President Obama has done something amazing and it WILL be life-changing for those like me with chronic illnesses. Except we’re the lucky ones. So many are like me in disorder only.

My family has the luxury of comparison shopping on the exchanges while others have no insurance and don’t even make enough to pay for the meds the ER doc prescribed the last time they got so bad they broke down and went to the hospital. Now they CAN- based on their income they can go to HealthCare.gov and enroll now and it might be FREE or under $100.

That changes everything and those Republicans in the House know it…they KNOW IT.

It’s just a shame they don’t care.

Perhaps if they were in a room with my family, sitting around a big office table, hearing about how hard it is to live with Lupus and what it does to your life and your kids’ lives…and then to suddenly hear the sincere thanks from a 10-year old child. Perhaps then they might let their hearts grow a bit and take off the attached riders and pass a REAL bill. Not one that tricks Americans into thinking they don’t even NEED health insurance and should just pay the fine. What sort of horrible advice is that? All because they believe this is government run health care? Last I checked Anthem Blue Cross and Aetna and HealthNet weren’t my government. All the government has done is put in place some rules that should have always been there- like the one where they can’t find really stupid reasons to kick you off their policy simply because you are sick and costing them money…we like that one at our house- and put all these companies together in one spot to compete for your business. Sounds pretty damn American to me.

But what’s even more American is a 10-year old boy finding his voice in a room full of adults simply to say thank you because he knew, at that very moment, it was important to express that his family needs ObamaCare and he was grateful to have his Mom.

That’s how the President knows he’s doing the right thing. That’s why he won’t give in and neither will we.

Thank you, Mr. President for saving us and to your staff for staying strong.

As for the House GOP…perhaps a meeting is in order between you all and my son. I’d let my eight-year old daughter tag along but you don’t want her there, trust me. She’s not nearly as sensitive and empathetic as her brother.

She’d just kick your asses.

Filed Under: #suckit, #SUCKITLupus, Count Waffles, Stepford Crazies

Good Luck, Disney

September 23, 2013 by Queen of Spain 7 Comments

I might be cooking dinner, or folding laundry (ha! my husband is cracking up right now) or even working on some of my own homework…but if I’m occupied that probably means the tv is on.

Sometimes I hear animated voices blasting from that square flat thing on our wall. Sometimes I hear music and video games. But most of the time I hear the “approved” channels at our house which basically include Disney, Disney jr., and Disney XD. Why? Because I can trust them. We have a level of trust Disney and I.

Not to compare the two, but currently this political Mamma signed a petition asking Nickelodeon to stop marketing junk food to kids. According to MomsRising, a 2012 study by the Center on Science and the Public Interest found that 69% of Nickelodeon food ads sell junk food to kids. This after Disney announced it will no longer accept advertisements for most unhealthy foods on its child-directed television, radio, and websites, and that it is updating its nutrition standards for marketing to children. See what I mean about trust?

That trust carried over as I got to chat with Leigh-Allyn Baker, she plays Mom Amy Duncan on Disney’s “Good Luck Charlie” and understood entirely when I told her about the trust I give to her as she enters my home every day, entertaining my kids while I’m busy getting dinner ready or packing lunches. Leigh-Allyn isn’t only a Mom on “Good Luck Charlie”- she also has two young boys at home.

Photo Credit: ©Mark Davis/Getty Images

We chatted about what most moms tend to chat about when given the opportunity: our kids. I went on and on about how mine adore her show, which just wrapped it’s fourth and final season and asked how she does it all. I mean, I realize I have to battle Lupus with my treatments and doctors appointments and still attempt to raise the kids and what not…but this woman stars in a Disney show, directs, produces, just finished shooting a movie (she called it a cross between “Uncle Buck” and “Goonies”…how can you NOT love that?) and is raising two little boys.

We talked about that trust thing too. With former Disney star Miley Cyrus’ Video Music Awards performance still on everyone’s minds, and my admission to Leigh-Allyn that my daughter BELTS out her co-star Bridgit Mendler’s songs ALL DAY LONG, it’s hard out there for a parent. Even a Disney parent.

Leigh-Allyn was smart and sweet about it all though. First of all, she assured me that if there is any girl that you want your girls to look up to it’s Bridgit Mendler. Hope she’s right with that one, because my 8-year old has “Ready or Not” on replay on her iPod. She also made some great points about Miley Cyrus (whom she’s worked with) when she said it’s good for kids to see the consequences of their actions. She said the kids may see what happened on the VMAs (if they were allowed to watch) but they also need to see the aftermath. And don’t get the two of us started on how the three grown men on stage escaped ridicule. But that’s another post for another time.

Oh and that whole balance thing? I told Leigh-Allyn she should write a book next because she had some great advice there as well: she called it “No brainer parenting,” where it did her no good to pine for her baby while at work or hold her baby while at home and worry about work, so she trained her brain to enjoy her life and live in that moment. It was key to making her work life and her home life successful. Total attention to her boys while at home and total attention to work while on the set. From that her children got to see a Mom who does what she loves and makes her happy.

Which is all we can really ask for, doing what we love and being happy, right? Which is just another reason to trust the Disney brand as it comes into my home through my TV or video games or books. I need to know they are looking out for my kids and sometimes, even me.

We’re headed to Disneyland* this weekend for Halloweentime and there is already a lot of talk about Disney’s upcoming “changes” to their Guest Assistance Cards for the disabled. I will be in my wheelchair. Getting those stares from people who look at me and wonder if I’m just lazy or if there really is something wrong with me. I can only trust the good in people.

I know many are very concerned about what the upcoming changes to the GAC means for parents of special needs children. This seems to be question #1 for Disney right now and many are already organizing change.org petitions, threatening to give up their annual passes, and generally throwing monster sized fits because their trips to the happiest place on earth will forever be ruined. The problem here is everyone seems to be working off rumors and speculation. Yes, the process is changing due to abuse of the system. So let’s go with what we KNOW is true. This comes directly from Disney to me:

Disney has an unwavering commitment to making our experiences accessible to all Guests.

After careful consideration, we will be replacing the Guest Assistance Card with the new Disability Access Service Card on Oct. 9 to create a more consistent experience for all our Guests while providing accommodations for Guests with disabilities.

Until Oct. 9, we will continue to use Guest Assistance Cards. We look forward to sharing more information about the Disability Access Service Card as we get closer to implementation.

I think where the confusion came was it was originally only reported that the GAC was going away with no mention of the new system.

Frequently Asked Questions:

How will the new program work?
The Disability Access Service Card will offer Guests a return time for an attraction based on the current wait time. Guest Assistance Cards will continue to be in effectuntil Oct. 9. We look forward to sharing more information as we get closer to implementation.

Did you ask for feedback in developing the Disability Access Service Card?
We are engaging disability groups, and Autism Speaks was instrumental in providing feedback as we developed this new process.

Why are you doing this?
Given the increasing volume of requests we receive for special access to our attractions, we are changing our process beginning Oct. 9 so that it creates a more consistent experience for all our Guests while providing accommodations for Guests with disabilities.

Who will be eligible for a Disability Access Service Card?

Our goal is to accommodate Guests who aren’t able to wait in a conventional queue environment due to a disability (including non-apparent disabilities).

Will Guests on wish trips also use Disability Access Service Cards?
No. Guests who are visiting through wish-granting organizations will have access through a separate program.

What should Guests do if they have concerns?
Guests should contact Guest Relations to discuss their assistance needs.

Now…I want to highlight a few things up there because I think they are important. The part about “sharing more information” as it gets closer to implementation time. The Part about guests with concerns contacting guest relations with their assistance needs. The Part about making experiences accessible to ALL guests. That means ALL. That means, in my mind, they will have to find a way to make special needs parents happy. Will it be the same as it was? No. Do I expect Disney to leave a community out in the cold? No. I don’t.

I trust.

I trust that when this entire program is rolled out there will be accommodations made for those who need it and no one will have to give up their happiest place on earth, their annual passes, or the only place they can take their special needs child.

I also trust that the place on this coast and the east coast that has been the ONLY place on earth to give my family respite from this hell of an illness, this never-ending IV, drug-laden, life changing disorder that has rocked our world will continue to be that respite, that very special place, that ONLY place where we can forget real life for just awhile and be a normal, happy, family.

Maybe I’m naive to allow their very nice actress to call me to discuss motherhood and the show my children love to watch, while their spokesperson gives me their latest lines about how their new park cards will work for families like mine…but I don’t think so. Not when you’ve felt the magic and wished upon the star and done all the things a mouse or cricket or even Princess told you to do, because if you did, it would all be ok.

I trust.

I hope I’m right.

*Disneyland has invited my family to experience the parks as it has for the past several Halloween celebrations as media.

Filed Under: Feeling YaYa, Stepford Crazies

Living with Lupus: Reclaiming Me

September 3, 2013 by Queen of Spain 6 Comments

Taking back my life from Lupus is no easy task.

But I’m doing it. Slowly. Piece by piece. Part by part. Brick by brick.

I’ve learned to manage the ups and downs of the pain. Which, truth be told, has been the hardest part. When you don’t want to get out of bed in the morning or fear what level of hell awaits when you open your eyes every morning…then you know what it’s like to live with an auto-immune disorder that makes your body hurt day in and day out.

But I’m finally used to that now. I can get out of bed and handle myself like a nearly normal person. I can make myself tea, take my pills, make lunch for the kids and pack their backpacks. All while grimacing in my head. As the doctors and nurses always ask ‘Are you at a 10 or a 4 or a 7?’ in my pain levels…it doesn’t matter. I can be at a 10 and still go about the morning routine. Because I have to. This is life now.

And because I won’t let it ruin my day and I won’t let it RUN my day any longer.

Then I had to take back the scheduling of my life. Yes, basically I spend my days in a doctor’s office or in treatment with an IV hooked to my veins.

I’ve now learned to schedule everything so it works with everyone else’s schedules. I go when the kids are at school and my husband is at work and no one is the wiser. I’ve taken back the part where everyone would have to move their day and lives around to take care of me.

And onto my bold step. The big one that will test how much this Lupus ‘fog’ has taken over. While I have taken some community college courses online in the past, I’ve kicked it up and re-enrolled in the school where I started: Michigan State University. I had to write a short essay explaining why I wanted to be re-admitted. And for some reason, they took me back.

I’m officially a Spartan again, although I’m not sure I ever really stopped being a Spartan. I’m hoping to finish my degree in journalism by remaining a parti-time, disabled student, taking courses online from my home in California.

I’m excited. I’m very nervous. Bust most of all I am proud of myself. I found a way to keep my mind busy while I figure out my next big step: taking back my body.

Stay tuned.

Filed Under: #SUCKITLupus, Auto-Immune Menu, QueenSparty, Stepford Crazies

Foam Fingers vs. Peanut Butter and Jelly

August 26, 2013 by Queen of Spain 2 Comments

My daughter tries to show me she’s a “big girl” all the time. She makes her own peanut butter and jelly sandwiches. Gets herself dressed, even when her choices may not match. She even tests just how much she can do on her own by trying things that she may not, exactly, be ready for…

Last night Miley Cyrus tried to show the world she’s a “big girl” too. But instead of sweetly accomplishing the culinary pb&j, she masturbated with a foam finger on stage with teddy bears and Robin Thicke.

We get it Miley, you’re not a little girl anymore. Unfortunately Ms. Cyrus you also showed us you aren’t a woman yet. At least not a responsible one.

I’m all for music and art shocking and pushing limits. But I don’t think that’s what Miley was trying to accomplish at the MTV Video Music Awards. She was no Madonna rolling around in a wedding dress, shedding her virginity. She was no Lady Gaga showing off her avant-garde art schooling.

She simply looked like a little girl trying very hard to show us she was a big girl. Just like my daughter tries to show me every single day. The difference?

My daughter is eight.

The good news here is we all can relate. Remember when you were younger and you so desperately wanted to be seen and taken seriously and NOT treated like you were, well, 20? Miley really wants us to know she’s to be taken seriously as a “big girl” and not a little kid…certainly not one who could possibly be associated with Disney or anything young and pure.

Unfortunately she failed miserably to show us she can be a responsible “big girl.”

We get it, we get it…you’re not a little kid anymore. But Miley hun, you could have just as easily of shown us that by rocking out in a sexy outfit, complete with teddy bears, and by throwing in just a touch of class.

Instead you used that foam finger to stroke your vagina and give the middle finger to all the kids who looked to you as a role model. You made it very clear you do not want that title any longer. And as a parent, no worries there, you’re not getting it.

Luckily in my house we don’t idolize celebrities anyway. However we do enjoy being entertained by good actors and singers. Notice I said good actors and singers. After last night’s performance I’m not sure you fit in that category either. But hey, you are young. And as we all tried to show the world we were “big girls” we’ve screwed up a bit. So I’m willing to give you another chance. After all, the world gave me more chances when I was trying very hard to be taken seriously in my early 20’s.

Just take it from those of us who have been there- if you want to be taken seriously a foam finger and long tongue aren’t your ticket to adulthood. Unless that adulthood consists of a trailer park, a stripper pole, maybe an abusive partner and a few addictions. Is that what you want? Is that what you want the world to see you as? The former Disney star turned white-trash entertainer, doing shows at the local watering hole while dirty old men stick dollars in your teddy bear thong? Is that “big girl” Miley’s dream?

Next time, stick with pb&j sandwiches and mismatched clothes.

Filed Under: Feeling YaYa, Holding Court, Princess Peanut, Stepford Crazies

Glimpses

August 18, 2013 by Queen of Spain 2 Comments

I caught a glimpse tonight, watching a children’s movie of all things.

I just glanced over at my daughter, who was casually sprawled on the top part of the couch drinking out of a cup.

I could see her. She was a teen. A full-fledged, young woman. Her features were so pronounced. High cheek bones, long dark hair. Those big, dark eyes.

She was sitting on the couch chatting with her with her friend who is here for a sleep over, only I was looking at grown women for that fleeting moment. I was in awe and terrified at the same time.

She was stunning and witty and she still did that thing with her hair that she does now at 8 years old where she pulls a strand over, pulls it against her cheek leaving a line, and then releases it over and over.

She’s becoming a woman before my eyes and there isn’t a single thing I can do about it.

There are so many things I want her to know. So many things I’m trying to teach her as she grows older.

She still gives me that look of shock when I tell her women are not treated the same as men. Not paid as much. Not listened to in a board room, not given the raises, promotions, or even the venture capital to become successful entrepreneurs. It’s as if I’m telling her fairy tales and she’s awaiting the heroine to swoop in and whisk away all the bad guys and insert a world where all women code, are encouraged to do math, and are treated equally. She truly doesn’t believe me. Or doesn’t want to believe me.

It’s as if she was blocking it out. She didn’t want to know just yet. She wanted to stay innocent just a little while longer.

But something tells me that glimpse of a woman I saw on the couch knew. And with any luck, was working with the rest of us to help change the ratio.

Who am I kidding, Hala already has.

Filed Under: Feeling YaYa, Princess Peanut, Stepford Crazies