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Saturday, September 24, 2016

Three 14 Year Old Girls

During three different times there were three different 14 year old girls. They all had one commonality: death intoxicated their minds.

We will call the first girl Maria. She came from a broken home in a broken neighborhood where the sidewalks were as cracked as the people. She grew up too fast; took leaps when she should had been learning to crawl. At 14 she had half a million emotions coursing through her on any given day and many were just due to the changes her body was making.

Sometimes though, the emotions combined with her life decisions were too much. So she did what teenagers do when they cry for help without even opening their mouths. And the right adult noticed. Because let's face it, 14 is a hard age and depression is more common than it should be.

Maria said that she often thought of killing herself. That she couldn't see beyond the next four years. That nothing was ever going to get better. She had already lived and been through so much she didn't want life anymore.

It was concerning to say the least when such a young person had such dark thoughts. She was healthy. She was completely normal.  Her life had just begun. That's why her mother had Maria go to a therapist.

Someone had to teach the girl that her life was only beginning at 14.

Maria would grow up and be thankful that someone taught her life was worth living.

Magdalena was the second girl. She was born with a disease that never allowed her a chance to walk. By the age of two she had a feeding tube and by the age of ten her arms were pretty useless. Her legs were an electric wheelchair and one of her best friends was a machine that helped her breathe at night.

Magdalena was hungry for life. Despite her craptastic body she was going to grow up and taste the bittersweet nectars of adulthood.

When she was 14 she had a bad hospitalization. She had had many up until that point. But this one was different. This one had nothing to do with her disease. It was two months of debilitating, vomit inducing pain. More than anything she wanted to die because life had never prepared her for such intense physical pain.

She didn't want to tell anyone. If she was going to die it was going to be a private affair.

Magdalena didn't die though because her mother wasn't going to have it. She knew that Magdalena had more to offer and experience despite how her daughter felt and what the doctors predicted.

Magdalena's mother was correct. Magdalena would grow up to be forever grateful she had a mother that saw the value of her daughter being in this world.

The last 14 year old girl I won't say her name because many of you already know it. But for all intents and purposes we will call her Sarah.

Sarah was born with the same disease as Magdalena. Sarah could only move a few fingers and her head just like Magdalena. Sarah required a vent to sleep at night just like Magdalena. Sarah never had many friends just like Magdalena. Sarah was wise beyond years the same way Magdalena was. The only difference between the two 14 year old girls was Sarah was supposedly in pain every single day and Magdalena wasn't.

So Sarah decided she was done with life. She just couldn't do it anymore. She announced her decision to the media, she had a dance where everything was donated and the whole town came, she raised an astronomical amount of money (no one knows exactly what the money was for), then she went to hospice and died.

Her suicide was lauded as "heroic" and "brave" when Maria's suicide would have been seen as "tragic." Why is that? We could talk about the ethics of this all day and honestly only Sarah and her mother know all of the details but please don't try to argue the fact that some lives are not perceived to be worth more than others because media tells us otherwise.

They were all just 14 year old girls.

(By the way, due to horrible reporting, now when people look up Magdalena's disease she has to work even harder to make them understand that she's not a hero for living just because of how Sarah's life was portrayed.)

The end

At 24, if I decided I wanted to die tomorrow and you think you care about me and you wouldn't tell me to fight then you are part of the problem.

Friday, May 27, 2016

Me Before Ableist B.S.

As a person with a severe disability no one has ever told me to my face that my life is worthless but I'll be damned if Hollywood doesn't constantly push the notion that it's better to be dead than disabled.


http://media.salon.com/2016/05/me_before_you.jpg

I wasn't going to write this post. I haven't read “Me Before You” and I don't intend to see the film adaption.  I've only read tons of spoilers and articles about the book. So what right do I have to my opinion? Well, being a person who is for all intents and purposes, paralyzed, I think I have the right to this opinion.

In case you've been living under a rock let me catch you up. that was my not so nice way of saying there are spoilers. “Me Before You” is about a young man, Will, who is suddenly paralyzed in an accident. Long story short, even after him and his caregiver fall in love, and his caregiver shows him what he's still capable of despite his disability (no sex though because people with disabilities don't have that <== sarcasm) Will, still decides to go through with assisted suicide to lessen the burden on his family and caregiver.

I won't pretend to know what it's like to be 100% able-bodied one day and in a wheelchair, dependent on everyone for care the next. I was born this way, more or less, God gave me lemons and like Beyonce I made some damn good lemonade. I think this book/movie is highly offensive to the majority of people who become paralyzed and choose to live. The author, Jojo Moyes, admitted to never even consulting one paralyzed person before writing this novel. Everyone knows a good writer does a lot of research.

And don't even get me started on the whole assisted suicide and the complete lack of actors with disabilities in Hollywood things. I just don't have the time.

Since this story relies on the whole plot device that people with disabilities are burdens to the world I thought I'd open your eyes to the truth. I'd be lying if I said I never ever felt like I was a burden to someone but I'd also be lying if I said I had nothing that was a burden to me. But then I have to wonder why I have ever felt like a burden to anyone?

Want to know what my biggest burden is? Ableism, which is "discrimination in favor of able-bodied people". This movie will be a hit because of ableism alone. Because we live in a society that ostracizes anyone different than whatever the hell normal is. And then praises “normal” people for dating “different” people while all the while wondering why they are together.

Ableism is having children and adults stare and point at you in public.

 Ableism is getting to a venue and realizing there's no wheelchair accessible access and just having someone shrug and say, “Sorry.”

Ableism is reading comments on the internet in response to criticism of “Me Before You” and having able-bodied people try to justify this whole thing. They will say things like “I'd kill myself too if I was in his position.” Not even realizing that they have been brainwashed by society to disregard anyone that doesn't have a perfectly working body or mind. Not realizing that if they were one day disabled they probably wouldn't be so quick to choose the poison apple of death.

If humans have lived through the Holocaust, civil wars, slavery, and many other atrocities they can also live with a disability in one of  the richest countries  in the world if they receive the proper physical and mental health services.

Lastly, I am not ignoring the fact that my life is sometimes harder than average nor am I saying that people with disabilities don't have the right to decide when enough is enough but I am DONE with Hollywood and authors romanticizing and perpetuating all the negative stereotypes of my life.

At the end of the day I am simply a human that requires a lot of physical help. Just because I need someone to wipe my ass does not negate the fact that my life is worth living and is fulfilling.

Tuesday, March 22, 2016

The Invisible Voter

Dear Bernie,
I chose you to take my campaign-speech-rally-virginity. Being a first timer I didn't know what to expect but I was excited. I had been vaguely following your slow ascent from a Vermont Senator to a serious contender in this election. I had listened to some of your speeches and I knew that many of your policies agreed with my moral compass. After also vaguely following Trump's shenanigans I'd decided if any election needs my vote it's the one coming up. So, when I heard about your rally at the Key Arena on March 20th I decided to go just for the hell of it. If I was going to continue to get behind your campaign I wanted to be as well informed as possible.

Now before I get too far let me just say this: I've never truly despised having a disability but I frequently despise this country's (world's) way of making me feel unwanted and non-existent. For example: if everything in the world didn't have stairs that would make huge strides in making me feel less disabled. But society has never had people like me in mind and that needs to change.

The doors to the rally were going to open at 12pm and everyone online was saying to get there really early to get a spot. My prematurely old joints hate the cold but I put on my big girl panties, wrapped myself up in my poncho/blankets, and arrived at the Key Arena at 10am. I wasn't surprised when I got there and it took the staff hosting the event about 5 minutes to figure out where I needed to go. I wasn't irritated at that moment. I've been in a wheelchair since the age of 2, I know how life works. I needed to go around to the other side of the arena. I've spent many summers walking the grounds of the Key Arena so I knew my way around. I wanted to go straight through the middle but the staff wouldn't let me. I told them my hands were getting cold so it would be difficult for me to roll all the way around the arena to get to the proper side but they insisted. This is when I started to get perturbed but alas I acquiesced and went around because there's too many battles in my life for me to fight every one.

At the back of the line of about 100 people there was another woman in wheelchair. Immediately, we discussed the issue the staffers had figuring out where to put us. We joked that events never know what to do with us because people with disabilities aren't supposed to leave the house. I laughed but you know how they say part of every joke contains some truth? Well, I felt the truth of that joke dampen my spirits a bit, the way the rain was dampening my face but I tried to ignore it because I truly was excited to be there. Eventually, a staff member that had some sort of clue pulled everyone with a disability out of the main line and put us in the “A.D.A.” line. The purpose of this being that when things got going we would get to go in first.

Meanwhile, the rally was getting closer and one could feel the belief in you, Bernie, in the misty Seattle spring air. It was cold but hearing you speak was going to be worth it. Seeing everyone my age and younger supporting you was worth it. The bomb squad came with their dogs and gave the arena a go ahead. And after endless hours they told everyone in the A.D.A line to go stand by the entrance. It was time and I was feeling alive. I was feeling the Bern.

But as an after-thought, because let's face it if you're not able-bodied you're an after-thought to society, the Secret Service realized those of us in wheelchairs couldn't get through the metal detectors and bomb dogs would need to be used for us. Now I don't care that they had to use a bomb dog for us. What I care about was the piss poor planning surrounding the event. As opposed to doing the diplomatic thing which would have been to make everyone wait, they made everyone in the accessible line (some of your most fragile people) wait outside an extra 45 minutes. Secret Service let at least 300 people through while those of us with disabilities waited for the bomb dog to come back.

The sad thing is I'm totally used to being treated like a second rate citizen. I've spent my entire life taking the back entrances into buildings. Getting seated next to the kitchen doors at restaurants. Having retail people ignore me when I'm shopping. I accept it because it's my life. But this stunt from the Secret Service was the last straw. I was exhausted, cold, and angry to the point that I felt tears prickling my eyes. I debated with myself whether or not I should have gone home, since my presence was clearly unwelcomed. But, ultimately I stayed because I believed you would say something in your speech that made everything worth it.

Flash forward to 5 hours ahead and you walked on to the stage. I felt my heart pick back up after a long day of disappointment. Thousand of people cheered as you talked about Black Lives Matter, LGBT rights, every ethnicity, women's rights, and every other group of people. I loved everything you said but guess what, Bernie?

You forgot about people like me. Essentially, you forgot about millions of potential voters that are waiting for one person to hear their complaints. Sure, you spent two minutes of your speech to mention the elderly, disabled veterans, and Social Security. You didn't mention the millions of people like me who are born disabled or become disabled for reasons other than war and age. You didn't mention that in most states people like me can't get enough caregiver hours to be independent of our families. You forgot to say that people like me are forced to live off the government or be super rich because that the only way we get the services we need. And lastly, you never said that people like me typically have to choose between marrying the loves' of their lives or having someone besides their partners get them out of bed and shower them. You would almost think that the millions of people that are like me don't exist.

Now Bernie, I believe in the things you believe in. All I'm asking is that you mention people with disabilities and the issues they face more extensively in your campaign speech. That maybe if people in the media actually talked about us there wouldn't be so many disability issues like the ones surrounding your event which I do realize were out of your control.

I'm just done feeling invisible. I am a person with a disability before I am half black or a woman because that is the identifying factor that impacts my life the most. And I expect to be recognized because the last time I checked my name on the election ballot is not stamped in invisible ink. Or is it?

Sincerely,
.............

Wednesday, November 18, 2015

Humility is Never Bad

No one ever tells you... If you do it right, life will humble you.

As humans we tend to categorize and divide other humans. Ethnicity, gender, sexuality, disability, and socioeconomic status are just a few dividing factors. I was raised fairly middle class. I was blessed enough to go on a few trips as a kid, I always had what I needed, and I typically got what I wanted for Christmas and on my birthdays. So when I would see people with severe disabilities who may not have looked as clean as me or dressed as nicely as I did I internally put "those" people in a category that I would never be a part of. (Bear with me I was a kid)

A few blocks from the house I grew up in there was a low income building. The building was originally intended for those with all sorts of disabilities. While it has anyone who's eligible income wise there's a huge population of people with disabilities. Hence, growing up I saw many of "those" aforementioned people.

What my snobby younger self did not realize is people with disabilities are expected to live on roughly $700 a month. Why you ask?  Because even though a person as disabled as me would need to be making a 6 figure salary to pay my medical bills and caregivers the government thinks if I'm making the average 30k a year I don't need their help. So it forces people with disabilities to either be poor or figure out how to be well off. Do you know how hard it is to have nice clothes and hair on $700 a month? I certainly didn't. Do you know how hard it is to be as hygienic as you should be when you're only allotted a small number of caregiver hours a month and there happens to be over 700 hours in a month? Fortunately, I have amazing family and friends so I won't ever know that struggle first hand. Nonetheless it's a struggle for many.

As life would have it I am now living in that building near my childhood home. Every day I am encountering these people that I used to think were so different from me. But they're not. Up until now I was just living under better circumstances than they were.

I think I used to distance myself from lower income people with disabilities because I didn't want the world to think I was like them. But I am exactly like them. Which isn't anything negative but it's to say that according to society my biggest identifier isn't that I'm part black and it isn't even the fact that I'm a woman it's the fact that I have a disability and that on the surface level I'm not like them (them being everyone who's abled bodied). And you know what, I accept that. I accept the disabled category because I'm a firm believer that as soon as you know your place in life the sooner you can start breaking molds and creating positive changes.

Acceptance is humility. And humility is growth.

Monday, November 2, 2015

Long Time no Blog

(I had to take a break but I'm back again. I've come up with a new direction for my blog and I have lots of ideas.)

No one ever tells you...sometimes you won't feel anything and that is okay as long as you learn how to feel again in the relatively near future.

For those of you that haven't been keeping up with me, I recently moved into my very own apartment. It's a process I had started at 18 that I had given up on in recent years. Starting in May of this year I received notice that I had a meeting with the Seattle Housing Authority saying that I needed to come to an orientation meeting or I would be taken off the list. So I went not really expecting much. At the meeting I was told that one of the apartments I signed up for may have an available unit within the next 6 months to a year. It was excited and it was a time frame that felt realistic considering everything I would need to do.

Two months later it's July and I got a phone call from the apartment saying there was a unit available and I should look at it so I could sign the lease. And just like that my excitement started its descent into a feeling of dread. I didn't have the benefits I needed. I didn't have my caregivers lined up. I didn't even know how to start the whole process. It was now or never on the apartment though so I took a deep plunge and signed the lease.

Like a fool I gave myself a few months to move out of my mother's house. I had no time or energy to let myself feel much of any. I felt if I got too excited it wouldn't happen. If I got too worried I'd crack under the pressure and never move. I've never done well with too many emotions. I suppose I like to suppress them until I know how to better handle them.

Now I've been in my apartment for a week and I want to be super excited because I did this. Ecstasy is the appropriate response to this transition in my life. I have wanted to live on my own for years. And we live in a society that tells us to to always be doing and feeling something. For a few months I haven't felt anything. I haven't even been able to write anything decent. But today I woke up and I felt something other than well controlled apathy. I felt wonder that I actually did this. And I felt gratitude to everyone that helped me with my apartment and who will continue to help me. And I felt like writing which is always a good sign. I'm sure that soon I will feel happiness and excitement again.

It's okay to feel nothing when everyone expects you to feel a whole bunch of something. Life goes by fast and sometimes you might need time to process all the changes. Just try not to dwell too long in the world of apathy for it is gray and life is full of color.

Monday, February 23, 2015

Don't be Crippled or Crazy but Act it

As a child I wanted to be an actress. I took drama classes and even went to those auditions one hears about on the radio. I taught myself to cry on command. I was committed to becoming famous, in fact sometimes I still fantasize about rolling down the red carpet. Acting wasn't just some childhood pipe dream but at some point I realized it would never happen for me. I had a speech impediment. I was never going to be conventionally pretty enough for Hollywood. And lastly, there was no one in the movies or on TV who couldn't walk.

Now I can fully appreciate the fact that art imitates life and the sole purpose of an actor's job is to be something or someone that he or she isn't already. What I can't jive with is the fact that actors with disabilities are almost never hired for roles but their “normal” counterparts are often given the greatest awards for portraying the lives of those not as physically or mentally normal. Oscars aka The Academy Awards are the epitome of success in the movie industry. I haven't seen “The Theory of Everything,” so I won't be reviewing that. What I know is Eddie Redmayne just won an Oscar for portraying part of Stephen Hawkins' life. I may not be an Academy judge but it's safe to say Redmayne won Best Actor because they were awed by the fact that he could manipulate his body to look disabled and perform as such. I'm not saying that wasn't a daunting and exhausting task but stay with me.

Today I read an article saying that actors who have done roles playing people with mental or physical disabilities almost always win the coveted Best Actor award. I find this extremely irritating because it's perpetuating a double-standard. I can't speak for everyone that has a disability, especially a mental disability. But what I can say is I live in a world that was not made for people like me. A world that has made me feel like a second class human more than once. I don't always think this way, I typically ignore it because I'm used to adapting but sometimes I can't help but notice the signs. When traveling is harder than it needs to be. When people intentionally or unintentionally ostracize me. When I can't get in a building or fit in the restroom. The list goes on and these are all signs that I live in a world that technically doesn't want me. Correction they want me but not my disability because my disability isn't pleasant or easy to deal with.

So, Hollywood I do wonder why do you ignore the “weak” in real life but reward your own for playing us? I'm not good enough to be an actress but my life is interesting enough to glamorize on the big screen, right?

(Kudos to those with varying disabilities trying to make it on film or any other form of entertainment, for that matter.)

Saturday, February 14, 2015

Let's Get Kinky: 50 Shades of Grey

Since everyone is talking about it I might as well too. 50 Shades of Grey. I'll admit that when I was 19 or so I read books. I liked them well enough but at the end of the day it's just erotica. The plot line and writing are mediocre at best. Everyone knows that the only reason this book got popular is because of the kink factor. 
The older I get the more I see the flaws in this story. The author, E.L. James claims to have done a lot of research for these books but I don't see it. Now I I'm not a sex therapist but being that I've taken classes on the psychology behind sex and I read science based articles on every aspect of sex I think it's safe to say I'm pretty well informed on the BDSM subject of FoG. For those of you that don't know BDSM means bondage/discipline, dominance/submission, and sadism (you like to give pain) and masochism (you like receiving pain). 
My first issue with this story is that it implies that everyone in the BDSM community has issues. In FoG the two characters, Mrs. Robinson aka Elena and Christian Grey, who are active participants in the kinky are pretty messed up. Let's start with Christian. He refers to himself as "50 shades of fucked up," that's a direct quote from the book. He was neglected and abused as a child and as he became an adult he realized that he liked being the Dom of women that looked like his biological mother. Gross, I know. But before he realized he was a Dom he was a hurt and confused teenager who couldn't even be touched. Mrs. Robinson was his adoptive mother's best friend. Mrs. Robinson made Christian her sub when he was 15 and they continued that relationship for several years. A painful or sexual touch became the only touches he could handle. He says she helped him but I say she raped him. 
So there you have it: a victim and a pedo. And I don't know the exact statistics but I won't believe that everyone in the BDSM is either a victim or abuser. There are people that get into BDSM so they can abuse other people but that's not what the community is about at all. The foundations of the community are trust, lots of communication, and most of all mutual consent between adults which leads me to my next point. 
Anastasia is a naive virgin when she meets Grey. Throughout the whole series on a scale of 1-10, 1 being vanilla, do it in the dark, missionary and 10 being kinky, dungeons and dragons, BDSM freaky Anastasia is a solid 6 and Christian is a 9 (in my opinion). By the end of the series her love magically makes them sexually capable (that deserves a post all on its own). But before she "fixes" him she repeatedly says how abused and scared she feels. I'd give you some quotes but someone was nice enough to do it for me http://magazine.good.is/slideshows/abuse-is-not-romance#0
If Christian was a real Dom he would have been more respectful of Anastasia's fears and made her feel safe. The fact that he won't let her see her friends, monitors her means of communication, and stalks her are all the signs of an abuser. To put the icing on the cake he buys her something after almost every time he gets too carried away with the sadism. It's like an after school special on domestic violence. 
As I said earlier I liked FoG well enough to read them all. I'm not going to berate the millions of people seeing this movie but I feel very ambivalent about seeing it and might not. If one only focuses on the sex and the budding romance without really thinking about any of it it's a fine story. But time and proper education can make you see many things under a different light and the complete misinterpretation of BDSM doesn't sit well with me. Besides the actor playing Christian Grey was supposed to look like sex on a stick and this dude does nothing for my libido, I digress. 
Anyway, Fifty Shades of Grey is nothing but a fiction story. Read the book don't, read the book. See the movie, don't see the movie. But stop debating about it all over the internet. Just hope people will be smart enough to differentiate between fantasy and reality.