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Friday, December 23, 2016

No More Deaths

My disease, Spinal Muscular Atrophy, is the number 1 genetic killer of children under the age of 2. Today I am 24 and I just witnessed history be made. But first, allow me to explain my disease.

I was born summer of 92. My mother said that when she was in labor with me the doctors joked that I was asleep because I wasn't helping with the descent at all. My mother also says had I been her second and not her first child she would have known that something wasn't quite right because my movement in utero was gentle and my little sister's wasn't. As they say though, “hindsight is 20/20.” As a newborn I had all 10 fingers and 10 toes. For lack of a less ableist term, I was “perfect.”

However, I never walked, I never crawled, and never rolled over in my crib. I was soon diagnosed with Spinal Muscular Atrophy (SMA) and my mother was told to take me home, love me, and plan my funeral. You would be surprised how many parents got and still get that same speech.

Obviously I didn't die but that doesn't mean I don't know death more intimately than a person my age should. I was 2 the first time I almost died and I was 17 the last time; there were countless times in between those years. Somewhere early on I accepted the mantra “I will never be as strong as I am today.” You see...

If SMA doesn't rob you of your life it will rob you of all the other physical things. I only remember what my smile was like when I look at old pictures; I was maybe 5 when I started losing it. I got a feeding tube at 2 and a half because that's when I started choking on food. I don't remember the last time I picked up a pen. I do remember laying on the couch in the third grade and becoming aware for the first time that I could no long extend my hands back, it was then I knew I would never do it again.

The thing about SMA is it's a sneaky mofo and it'll plateau for years tricking you into thinking you got this. Only to rear it's ugly head and suddenly you can't draw anymore, you stop wearing jackets because you can't drive your chair otherwise, or a simple head cold has landed in the hospital and you're either going to die or going to go home with some machine you don't want to help you breathe.

But as of today, 2016 Will be the last year any baby, child has to die from this disease. The FDA has approved the very first treatment for SMA, something I never dreamt of seeing in my lifetime. When used on infants and little kids this drug has shown to reverse the damages of SMA and help people gain back some strength.And that my friends is the best Christmas gift that anyone in the SMA community could have hoped for.

(I'm not sure what it means for people my age/older as there's some controversy over how the drug will be administered to people who have rods in their back. I'm content with never smiling again or using my hands like I used to but if I could just maintain that would be enough.)

Wednesday, November 9, 2016

Thank You, U.S.

I couldn't finish watching the results come in during Election Night 2016. As Trump kept getting closer to 270 I went to bed praying for a miracle. I knew that after having 8 years of Obama we probably wouldn't have another democratic President; the good ole' boys, hillbillies, and the elite just weren't going to go for it. But never in my wildest dreams did I think Trump would be the republican nominee. And more people didn't vote for Clinton because she was just another slimy politician, the lesser of two evils. We wanted someone to break the mold and it should have been Bernie but we didn't get Bernie so I voted for Clinton. This election was so despicable that many people (aside from the poor and uneducated) didn't vote at all and the consequence is a “white lashing” (definition: a back lashing fueled by angry, white people) so deep it hurts my soul.


I woke up this morning completely forlorn and terrified for my future because the United States just told me I don't matter. Before I  address my concerns let me tell you the main demographic for Trump (this isn't me being a bully, this is straight from the analysts): uneducated, white people. If that doesn't say that this country has a serious education problem I'm not sure what does.

My concerns:

1. I am a woman. Thank God, I'm not conventionally attractive or beautiful or Trump would want to grab me by my pussy. That's sexual assault. But Trump said that was just locker room talk. So is that what were going to teach boys? It's alright to talk about another human being as though they were made solely for your penis and pleasure because our President does it. And we will probably continue teaching our girls to fear men and not realize that our bodies belong to only us. I could go on about all the disgusting things Trump has said about women or you could just look up “Trump and women” and see how many hits you get.

          1.a Let's talk about reproductive health. As long as Trump is in office Planned Parenthood probably won't get funding for the next 4 years (I refuse to entertain the idea that he will get a second term). That's millions of women, myself included, who won't get affordable/free health screenings, birth control, abortions*, or mammograms. Let me just say, that as a woman with a physical disability Planned Parenthood has been one of two medical providers that has treated my sexual and reproductive health with respect and normalcy.

                1.a* I could write dissertations on abortion but I'll try to keep it brief. I'm a Christian. I'm also pro-choice. It is the epitome of hypocrisy to be pro-life, pro-war, and anti government assistance. Please, see how illogical that is. Also, please understand that as long as women are the only ones responsible for carrying children there will always be abortions. It is not "ripping a baby from limb-to-limb" nor is it a decision the majority ever make with ease. It is a burden anyone who gets an abortion realizes they must carry on their own. Without safe, legal abortions we will go back to the days of coat-hangers, back-alleys, and asking our boyfriends to beat the babies out of us. If you think I'm being melodramatic pick up a few history books.

2. I have a severe disability. The other day I had my yearly meeting with my case manager who gave me the whole spiel that basically says the state of Washington will not cover 24 hour care and should I ever require it (the joke is on them because I do require it) I would be put in a nursing home. Mind you, there is never enough staff in nursing homes so they happen to be places where people like me die from neglect and or abuse. That is one of my biggest fears, it keeps me up at night. How the hell will I continue to live an independent life if my hours get cut or if something happens to any of my back up caregivers? When I think of Trump I think of everything that will get cut: SSI/SSDI, public housing, Medicaid/Medicare, caregiver hours, etc. All of those have a direct impact on my life. "Stop living off the government," you Trump supporters, bellow. Yeah, I'll stop doing that as soon as I start making over 200K a year because realistically that's what someone like me needs in order to get the care they require.

3. I am a woman of color. My mother is white and my father is black. I might be pale but for all intents and purposes my hair is what I affectionately refer to as “black people hair.” For the longest time I unintentionally “passed” because I kept my hair straight. I rock a ‘fro pretty regularly now and it's funny because for the first time in a very long time people realize I'm black. What's not so funny is last night for the first time in my life it occurred to me that if racial tension gets real bad I could go back to passing and this time it would be intentional. And I'm terrified for my brothers and sisters that cannot pass for anything but black because last night in the Trump headquarters, I saw a bunch of delighted, white, people wearing hats that said, “Make America Great Again.” Which America is that? The America that was built with our sweat, blood, and bodies? The America that kept the corpse of a black woman on displays at museums for decades because of the size of her ass? The America that gave black people syphilis and denied them the treatment when it was discovered? The America that assassinated MLK Jr. and JFK because it wasn't ready for equal rights? The America that mutilated and killed a black boy for whistling at a white woman? The America where people in authority get “scared” and will kill people that have no weapons? Or the America that is 12% black and has a prison system where over 50% of the population is black? What is insane is that's only one group of marginalized people.

Of course, my heart is broken. And I didn't even touch upon the fact that LGBTQ people might be told not only is their love invalid but it's no longer legal, that Muslims and Mexicans are probably going to get deported to God knows where regardless of where they were born or grew up, and Trump's hateful mouth is probably going to bring WWIII to American soil because if other countries didn't hate us enough now they have every reason to. And the icing on the cake? Republicans control the House and Senate. Good job Americans for saying a big, “Fuck you,” to everyone that isn't a rich, white, penis-attached-to-their body-human being.

That's okay, I still choose love, unity, and peace. Hell, I even still love every rich, white, man who doesn't think he owns my pussy or is better than me just because I own a colored pussy that happens to be sitting in a wheelchair.

I'm beyond tired and will accept hugs and cheese to make me feel better. But really, if you don't think you matter, you matter to me.

Obama wasn't perfect (I do love him and his family), no one is, but how many years does it take to build a society and how many days does it take to burn it to the ground? Be prepared to find out.

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.

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?