Posts Tagged ‘disability’

It has been longer than I care to admit than I have been here.  I’ve gotten more health problems, more life problems, more problems in general.  But I felt the need to publish this on my blog.  I thought I was going to submit to another platform I’ve been writing for, but I changed my mind and decided to submit it to my blog instead, since it’s one of my better pieces that I think deserves a larger audience.

Jimmy Kimmel has reaffirmed his place as my favorite late-night talk show host, for the very same reasons you probably don’t like him right now. That’s right – Jimmy Kimmel has been on an entire new plane of respect ever since his monologues about the Cassidy-Graham healthcare bill. Regardless of your political views, whether Republican, Democrat, Independent, or the Rent is Too Damn High Party (it’s real), Jimmy Kimmel is doing something important and it’s about time you looked at it directly in the eyes.  He gave an emotional monologue back in May when his child was born with a heart disease that can only be fixed through many expensive surgeries.  It’s a congenital heart condition that often requires lifelong care, and what better way to spread awareness for a problem than to use your A-list fame?

Now, it seems, he’s taken it one step further, literally picking a fight with Senators and other political talking heads because of what happened to his son.  He’s making America look at this problem right in the eye, not as a politician, but as a father.  Jimmy Kimmel, in essence, has become the face of worried family and friends when someone is diagnosed with a life-altering disorder, that often times never go away.  And some of us, at least, are happy he is.  Politics are an issue people avoid – it ruins Thanksgiving Day dinner, it causes fights on Facebook, and ultimately is just never a fun topic for people to engage in.  The problem is, the very issues you’re arguing over with Aunt Tilly living in Idaho is the very issue that is going to affect somebody in a very real way – and Jimmy’s child is just one example of that.

Being disabled in America is inherently political, as much as you’d like to stick your head in the sand and pretend it’s not.  Let me clarify:  It shouldn’t be political, but it is.  Nobody, really, wants to kill a disabled person. After all, we’re told we are inspiring and amazing and all of this romanticized crap about what it’s like to wake up with pain every day.  Except, it’s all romanticized.

And Jimmy Kimmel is reminding you of that.

He’s showing you how your inability to have a dialogue about a problem is affecting real people and how your romanticized view is nothing more than a feel-good story you made up in your head while ignoring the very real struggles someone experiences.  Critics will say he’s politicizing his son’s health problems. And anyone who is sick, or has a sick child, knows being sick is political, not inspirational.  After all, we needed an actual bill to win rights for disabled people.  If it wasn’t political, we wouldn’t need to have the Americans with Disabilities Act to ​literally be treated decently.

Sorry to be the one to break the news.

Aside from that, it’s also a highly underrepresented group of people who even within liberal circles are often forgotten to exist.  I’ve been surrounded by numerous talks regarding groups of people that are in the minority, and it often took a very long time for disabled to be mentioned.  In fact, disabled people are often forgotten entirely whenever I attended such a talk.  The only people who always included them were, well, disabled people.  It’s well known LGBT people, people of different races, people of certain religions, etc., are in minority groups.  But the problem is that “disabled” is often not a qualifier that is remembered.  

Someone who has a life changing or rare disorder does not have the luxury of sticking their heads in the sand and ignoring a bill like the Graham-Cassidy bill.  Because the passage of such a bill could literally mean life or death, and your sick friends want you to know that.  I tend to avoid political conversation, but wanting to kill me is generally where I draw the line (pretty fair, don’t you think?).

They want you to pay attention to these bills that are attempted to be passed, because we don’t have the luxury of calling it political hosh-kosh and saying how difficult healthcare is to resolve.  We don’t have the luxury of analyzing the details of how kinda-sorta pre-existing conditions might be covered, mostly because we will definitely wake up the next day feeling our pains, attending our treatments, and being scared about our futures.  We have to pay attention.

This isn’t about Democrat vs Republican.  This isn’t about the fine details of Obamacare and whether it’s good or bad or neutral or apocalyptic.  This is about pre-existing conditions.  This is about lifetime caps.  This is about that I didn’t want to get an official diagnosis because I knew that insurance companies wouldn’t want to insure me.  This is about peoples lives, which is inherently political, because it involves all of that.  However, there is another side to this.

It’s time to start remembering that nothing is complicated about not allowing insurance companies to discriminate against people with pre-existing conditions (such as raising premiums).  It’s time to start remembering nothing is complicated about giving a person a life cap and subsequently letting them die at 35 if they’re not rich.  It’s time to remember that you probably have a pre-existing condition, or will get one in your lifetime. Nothing about any of that is inherently political.  Taxes are political, not whether or not a cancer survivor can be priced out of insurance, or the 15 year old can get heart surgery.  It’s only political because it’s made to be.

And the sickest of people, currently, are fighting your battle. The people I see paying attention to this bill are the sickest of people I know, or people who are very politically savvy.  It’s not like when there were protests in the streets for rights for other groups of people.  People I know and people you know aren’t paying attention, unless this bill can end their lives.

Still, we are forgotten in mainstream dialogue.

Thank you, Jimmy Kimmel, for attempting to change that, and becoming the face of parents with chronically sick children, and the face of the worries, stress, and sleepless nights we experience as adults.  Thank you for becoming the face of the fear of being chronically sick and unable to work and the face of a scary treatment.  Thank you for trying to get people to pay attention.

Because until now, nobody else has.

Unless they’re calling us inspirational, of course.

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*I do not speak for all chronically ill people.

Well, I’ve been sick again and it’s fun.  I miss my blog, I love you guys for being patient.  However,, I am writing a five minute post.  I am chronically ill and that’s part of why getting long, thought out, perfectly timed posts is so difficult.  I may actually start an audio YouTube channel because it will be easier a and quicker to get things done.  I just prefer writing – but I guess I can’t have everything.

Over the last few days I have experienced things people should not say to the chronically ill.  Things that have decidedly pissed me off.  Things that make me wonder if the people I’m talking to need to go see the Wizard for a brain.

Without further waiting, here we go, in no particular order:

1.  I know exactly how you feel.  I once sprained my ankle and I had a lot of pain!

Let me get this straight.  You sprained your ankle, once, maybe a couple of years ago, and that equates to a life long, life changing illness that needs to be constantly managed for the rest of your life.  You do not know exactly how I feel.  Unless you are me, and you have the illnesses I do, you cannot know exactly how I feel.  You don’t know how I feel.  What I have in particular is like spraining every area of your body every day.  That said, please stop pretending you understand, please stop being condescending, and please start listening. 

2. Nothing at all.

Society, really, I notice when you are hiding the fact the chronically ill make you uncomfortable.  Why is talking about it such taboo?  Bullshit.  I have health problems.  They are a part of who I am but do not define me as a person either.  You could ask me how I feel, just like I – or any other person chronically ill or not – would ask you if you had like, a 12 hour stomach virus, which is decidedly not life changing.

3.  That sucks.

So do you. 

(this one should be self explanatory)

4.  Just get some sleep.  You’ll be fine.

If only sleep cured idiocy, too.  I sleep more than the average person.  If I don’t get 9 hours of sleep (sometimes I sleep 12 hours, like today) I feel like a zombie.  I feel like I have been out drinking in the city when in reality I just got less sleep than my body demands.  Telling someone shut up and sleep and you’ll be fine is really pretty fucking insensitive.  Listen to us.  Let us talk.  Next time you get into an argument with your brother or sister or parents and have to vent, we are going to say just get some sleep and you’ll be fine.  It’s just not appropriate.  If sleep fixed what I have, I’d break the fucking Guinness book record.

5.  I heard about this Dr. Oz remedy if you eat dog shit and take a bath in deodorant you’ll feel better!

We really dont want to hear about the remedy Dr. Oz talked about because if we knew of a remedy we would probably use it.  A doctor would probably suggest it and if they didn’t, we probably would find it ourselves or ask a support group their thoughts.  You will not fix us.  Sorry, white knight.

Point in case:  LISTEN.  BE SUPPORTIVE.  TREAT IT LIKE ITS REAL. Don’t take us for granted.

There’s more, but I’ll make a part 2.