SuperCripple VS Advocate Woman! Issue#1

Sometimes you have days that feel like everything that can go wrong, will go wrong. Other days everything goes right, even when you least expect it. Today I had a day of Advocacy. I felt compelled to advocate not once, not twice, not three times, but four times. Each atttempt at advocacy costs energy, so, I am considering taking an epic nap right now. Instead, I see this as an  opportunity to discuss advocacy once again.

I found myself waking up to the phone and I actually answered it. I am antitelephone, and since ours does not have a speaker phone option I get pain when I use it. I still felt the need to answer and found myself being told that tommarrow at nine AM I was due for my mammogram. I had some questions, and was reminded the value of questions. Here is a sort of rewrite of the conversation.

“Don’t wear any make up, powders, deoderants or parfumes. These can cause false positives.”

“Great, I have some questions for you. Do I have to lay down during the mammogram? I am concerned about positioning.”

“Uhmn, you have to stand ma’am.”

“I am a wheelchair user, what is your accomodation for this eventuality?”

“Well the technicians can hold you up?”

I felt anger at that response. I should not be forced to stand during a painful proceedure. I consider mammograms painful, due to the fact that they crush your breasts. I will find out how painful on Thursday.I took my deep breath and responded with this.

“Ma’am that is wholly unacceptable. Not only could that damage my body further but it puts me at risk for passing out. I find the notion that you can just hold me up until you are satisfied humiliating as well.”

“Please hold.”

I was put on hold for disagreeing with her, though it wasn’t for very long. I hadn’t even decided what to feel about her thrusting me into Hold Limbo. This was good, I dislike being on hold and forced to listen to cheesy instrumentals of current pop hits. I once heard an instrumental of some Eminem music. That was just weird.

“Ma’am I see here you are not over fourty. I am cancelling your Mammogram, you can just get an ultrasound.”

“No, my doctor and I discussed the need for a mammogram. My doctor knows what I need, and you are not a doctor. You are a receptionist. It is your duty to follow the orders given to you by doctors. You can cancel the appointment, but, I would like the number for the head of radiology please.”

I was wide awake now, and having dreamed last night of a future when I was fighting for the rights of others on a National Scale, I felt inspired. In my dream I was the next Civil Rights Leader for the disabled community. My voice was the voice that pushed for training for the police, that pushed and pushed until finally equality came. It was a good dream and pushed me into action. I was put on hold again. She came back and said something I found shocking.

“I don’t have the head of radiology for our hospital.” What? Why not?! Instead I took a breath and asked, “Then, is there someone else I can talk to?” She was quiet for a moment then said, “I think the Women’s Hospital can accomodate your need.” Not only is the Women’s Hospital my neighbor, but, I love that place. When I need an ER I can get in, almost immediately. She did give me the number for the head of Radiology for the Women’s hospital.

I called and made my appointment, and then I left a voicemail for the woman who runs radiology, expressing my concerns and my challenges with the Mammogram. I wasn’t even ready to drag myself out of the bed yet. This takes time and my body wakes up paralyzed. She called back before I had even managed to scoot to the edge of the bed. We’re meeting on Thursday to discuss accessibility with in the confines of her hospital, and to discuss a plan to raise awareness for other hospitals so that women can get their mammograms. She agreed with my statement that a woman should not be denied a medically necessary and preventative screening based on her ability.

On Thursday I will be in a nonchair, but I will not be standing and she promised options for adjustability in seating to protect my body from the risk of fainting. There will also be extra nursing staff incase of the inability to accomodate that. This is challenging, at times my wheelchair isn’t adaptable enough. This was a victory. I negotiated for what I needed and am in return going to fulfill a need for others.

After getting dressed I was going to grab Sprite to take her with me for my speech, because I miss her working and she has finally begun to regain her Meow. She had a temperature. Instead of letting her come out, I had to let her stay in. This either was helpful or harmful, a mixture of the two most likely. Right now she is so glad I am home, that she is curled up on my knees with a little kitten grin. I need some blood work done, and after fasting and making myself drink only water (makes me queasy) I went for it.

My person unloaded me and my chair, and while he hefted the ramp back into the car I went on my merry way to sign in, that way I wouldn’t have to wait. I did not make it in the door. The curb cut was blocked off by a car, a woman sitting inside waiting for someone. I considered my options and decided for passive protest, waiting to educate the miserable soul who could be so inconsiderate. Out came a man who wore a hat declaring he fought in World War Two. He is the first veteran I have not thanked for their service to this country. I feel slight guilt at that, but only in the form that I could not undermine my own rights.

This converastion was full of his hatred of the disabled. His wife had just broken her leg and couldn’t walk to the car. I understand needing to use the curb cut for a chair. Instead of making sure anyone else who might be in a chair could use the curb cut and go inside, he felt the need to take fifteen minutes of my time with his selfishness. He felt the need to make it appear that it is my fault I cannot go over a curb, and that because he fought in the war he gets a free pass. I did my best to keep a calm tone, and success was had. He was not happy when he left, though I did try to accomodate his need to enjoy his able bodied superiority, his white priviledge and his manliness. I did not want to upset him, I wanted to educate. Here is my conversation summary there.

Him: “Move. I can’t pull forward with you there.”

Another car had come up behind him after I had made myself cozy blocking him effectively in his spot.

“Sir, you are breaking the law. You left your car illegally parked. blocking me in the street. Not only did this endanger my saftey but it is a federal crime. ” I then started to move out of his way.

“So what? I needed to put her wheelchair back inside. She broke her leg.”

“Sir, there is a parking spot less than three feet from us. You should have used it. Next time, please make certain that you are not denying persons access to the emergency room.” The ER is right across from the medical lab. I found myself at that moment wondering if today was ADA Awareness for the folks at the Women’s Hospital courtesy of yours truly.

“Well I fought in World War Two.” That part made me want to snarl at him about rights, priviledge and why he fought. I wanted angry discourse. Instead I took a deep breath and responded with this.

“I do appreciate my freedom, but, that does not give you the right to violate the federal law. My civil rights include access to this hospital.” I was out of the way of his car now, and he had begun to snarl. I lowered my voice, just a bit, “You should be aware that I could call the police to have them enforce the Americans with Disabilities act, having you fined. Instead I chose to make you aware of the law. ”

“No one reads the ADA anyway, you’re the only wheelchair person who has.” This man was using the ADA for his wife, so that she could have a reasonable accomodation of transport to their car. The ADA protects his right to medical care for service related disability, as do other non ADA laws.

“Sir, I am afraid you are misinformed. Most disabled people discover the value of knowing their rights, so that when people discriminate they can educate. You should try reading the ADA, you might be surprised at how much it effects you.”

He finally got in his car and snarled at me, “No one cares about you gimps.” It was difficult to not give him a rude gesture. Instead, I smiled and said, “Sir, I am not a gimp. I am merely wanting to go and get a blood draw. I need my cholesterol checked.” He turned purple. When people turn purple I always want to see if a purple people eater is around. This makes me relax, internal laughter at their overreaction feels good. “Have a nice day sir, if I see you doing this again I will call the police so that you can pay the fines. The minimum, I believe is about $500.”

I was reacting to my sun exposure at this point. My right ear was throbbing, as it had been for some time, and my back ached. I signed in for my blood draw, then began to see about getting my sleeves up. My good arm for blood had developed a giant sore right over the spot where the needle had to go. I have two spots to draw blood, one in each arm. Everywhere else is not an option. This meant that even the small children’s needles aka Butterfly Needles were not only necessary but any deviation could result in my bleeding. I have the hemophiliac gene and often display symptoms, though, my doctors assure me this is not true hemophelia. I agree with that diagnosis as I do not always bruise easily. At times I am injured and no bruises appear in my flesh.

My next and third for the Women’s Hospital opportunity to advocate came as soon as I went back with the tech. I reminded her of my need for a butterfly needle, and she went off to gladly accomodate me. She was great, and it turns out a med student. First, I had to argue with her teacher about the butterfly. They apparently keep them locked up now, to cut costs. This means if she is not there, a person needing a butterfly cannot get their blood drawn.

“Ma’am my student tells me you are requesting the butterfly needle. We reserve those only for people who actually need them.”

“Without the use of the butterfly needle I bleed enough to require hospitalization. Also, most of the time I then require six or seven attempts at penetration.”

“Are you a hemophiliac? You don’t look like a hemophiliac.”

Slow deep breaths. I had left my person out in the waiting room. I may be terrified of needles but I am not about to have him hold my hand when I can control my terror.  “That is discriminatory. Not only do I suffer from excessive bleeding, as I stated to your technician, but, declaritive statements that try to diagnose ability based on appearance are disabling to this hospital.”

She made a face and said, “I’ll call the head of security and have him escort you out.” Disagreement means I cannot have my blood test? I put on my inner Mule and let my stubbornness guide me.

“I’ll be contacting my local ACLU to sue this hospital. In this economy this hurts more than just you. I do not want to have to sue, and yet, people like you perpetuate the stereotypes of disability. Calling security merely proves your need to dominate the wheelchair user who knows her body. You will provide her with the butterfly needle, you will also apologize for your bigotry. I do not care if you actually mean it, but, if you want to discriminate, I will fight you. I will fight you so hard that you memorize the ADA just to survive the onslaught. I am just one woman, who has made a reasonable request. I have a speech to give in the next hour, and I would rather do that than bleed out in your hospital over your under educated notions.”

This was a bit harsh, but, being straight out nice was not working. I said this mostly tonelessly, trying to not let my anger win. Yes, I threatened to take legal action. This is my right. I have the right to sue for action when I am being discriminated against, denied proper medical care, and I also know the power of my words. She apologized, gave the tech the b utterfly needle and walked a few feet away to watch the student work. Her apology was a muttered thing that I barely heard, but, she relented. Before I tell you about my educational moment with the tech, I will say this. She stopped me on my way out and asked me where she could read the American’s With Disabilities Act. I wrote out several URLs for her. She will not make the same mistake again, especially as she is now educating herself.

The tech was curious. She asked me how I knew what to say and do. She also discovered that aloe allergies exist. I watched her reaching for the green gloves, the name on the box actually clear enough for me to read.

Me “Do those contain aloe? I am allergic to it.”

She grabbed another nonlatex glove, “Really? Sorry about that. I never considered allergies beyond latex. Do you have a lot of allergies?”

“Yes, I have enough that I have to be on constant guard against them.”

She nodded then and asked, “So,  how did you learn about the ADA?”

“I was told I was healthy as a child, but crazy. I was told I hurt myself because of the sores from one of my genetic conditions, supposedly rare. Hospitalization trained me to try and hide everything wrong with me. As an adult this challenged me to accept my diagnosises. The doctors had been wrong. I was treated for hypochondria.”

The H word caused her to roll her eyes, “So, you really didn’t need the butterfly then.”

“No, I do. I have medical documentation for the need. Hypochondria does not exist.”

“Ten percent of the US population has it.”

This made me smile. I love the statistics game sometimes, it can be an easy win.

“Okay, how many people have hard to diagnose, rare conditions such as Ehlers-Danlos Syndrom or Fybromyalgia?”

“Uh 30%.”

“So, with these numbers increasing daily, people suffering for years with their invisible illnesses and the like, what would you guess the percentage to be for undiagnosed illness?”

“40%.”

“Well, if Hypochondria is in just ten percent of the population, then, that covers your instances of hypochondria. It does not exist. I am in this wheelchair because my pain was not allowed to exist for so long, that my invisible illnesses became visible.” She was quiet, and finished the draw before she said.

“So, what other disorders of the mind aren’t real?”

I shrugged then, and answered honestly, “I do not know, but, statistics cannot accurately guide you or any other medical profession. They can only analyze the data that is present.”

This was the fourth chance to advocate. I am not counting the usual advocacy for safe food at fast food resteraunts. Dairy Queen had an employee who didn’t comprehend about no bread and no pickles. Her manager is going to read the new ADA ruling, I gave her a heads up that more people with food requirements will venture out now, and she should be prepared because when her employees tell someone to just eat paper and ruin their food, it will hurt her. Some advocacy and education comes from the strangest places.

I made it in time for my speech, the first speaker, Don Dubois, is an advocate for Lupus. He gave an educational seminar on how to negotiate. I learned from this, and had some of my own self discoveries reenforced. I picked up new techniques I will try, and, I got to see a great speaker. His disability melted away as he worked the room.

My speech, Wordabration was hard. I admitted for the first time outloud to a nonmedical group that I have suffered abuse. I admitted the challenges behind why, and honored the words that lead me to my freedom. I explained my wordabration, and recieved a standing ovation for my speech. I am so happy to return to my Toastmasters Family, that I used the words. I even remembered my closing.

I never use notes for speeches, I panic if I forget something, and then I ruin my flow. Everything felt like a scene from a movie. Everything felt wonderful, safe, and I was awarded the best speaker award for this week. To me, for my first speech in six years, this is a great honor. I am going to evaluate a speech next week and volunteered myself to work more speech contests.

I came home to a half dozen voice mail messages, and ran out of advocatability today. I had to have my Person make some calls for me. Walgreens automated system had gone insane, trying to deny the prescriptions, deleting one, and filling one.I also had my right earlobe explode. Apparently, since mid December when I last wore earrings, I had a growing abcess. It hurt, and now I have five holes in one earlobe. I am certain I just lost the ability to wear earrings.

This is a fairly average day, when I think on it. Every chance to educate must be taken. I feel at times like the world expects me to be SuperCripple, flying my way around their bigotry. Instead, I aim for Advocate Woman, Advocating her way to JUSTICE!

Hot Dogs

In Washington domestic abuse victims now can protect their pets. A part of me felt utter elation for a split second before the futility of this struck me. If my cats are home alone, and my abusers magically find me, a piece of paper is not going to protect them. Yes, violence against animals is a huge problem, especially when small children are victimized by the terror that Daddy or Mommy is going to hurt Bowzer because they were bad.

I have been there. I spent years trying to eradicate my ability to love any small animals out of fear. This sudden dejected response brings me up to a point of realization, we need better protection for our humans and animals. If I had felt that I could have safety, options, or that my existence as a woman without children would have not meant another tour of danger where my life was forfeit able to convenience by the shelter system locally, I would not have spent four years with hidden abuse.

I do not like to talk about these topics, but I feel I must. How can I deny the truth and expect other people to see the way out? I was shown, or I would be far worse off than I am now. From some aspects that notion is laughable, after all how can my health get much worse? I can answer that question. I also look at my mind. My mind is strong, free from suicidal ideation for the most part, and it is able to reject the idea that a bullet is the best pain killer.

That does not mean that I should have to feel fear. It is an awesome thing, the hallelujah godliness sort of awesome, that our animals are finally being acknowledged as impotant. Often, if food was not enough to make me obedient, all I had to do was think of my cat and her own special needs and I would do what was asked of me, even if it was torturous to my body. Give up the money I need for clothing and food? I’ve done it. As of right now I am fighting back from a waredrobe of two shirts and four pairs of pants.

Does not having clothing seem silly to compare with being hit or your animals being burned alive? In some aspects it does, yet, being forced to wear clothing that is not appropriate for the season can be dangerous. You risk exposure, overheating, freezing, sunburn. Not having enough clothing to merit doing laundry or to make it worth the time to change out of the outfit you have on for a week is also depressing. Many women are controlled in their relationships by their lack of finance for fashion, it becomes a third rate priority and eventually that can impact their jobs, their social lives. This impacts their ability to be taken seriously and to feed their children. If they are not taken seriously during a crisis, either medical or one where they make their break for freedom, this can leave us with another statistic, instead of a survivor of abuse.

Should it? Not at all. So, as we celebrate this new law in WA, lets look at other ways we can try and help people to rise above. I look forward to the day when a Utopia exists. Man, Woman, White, Black, Asian, American, Mexican, none of these words will matter. Violence will be a memory, not forgotten but taught about with utter honesty so that history does not continue to repeat.

I have a dream, a dream for every woman who has ever felt fear, for ever child who has waited to see if Daddy was going to get mad because they sneezed. I dream that these women and children find freedom and grow into well rounded adults who are secure, able to advocate to protect the weak and the innocent. I dream of a day when domestic violence is a faint memory, a shameful one, and is no longer an option.

The Rape of Innocence (Trigger Warning)

Literal. I lost my innocence, as defined as physical virginity to my father. It was rape. It was never consensual. Incest is bad. Typing these words is extremely difficult but my day has already been one full of tears, therefore, I am going to go with it. His excuse for rape, his reasoning that made it A-Okay to violate, subjugate, and to hurt me sexually was this. “You look just like my mother.” I was four years old. Today I was triggered. This isn’t an easy thing to admit, and I feel uneasy each time I come across things that remind me of him, and at times my PTSD is triggered by a harmful thing. Today I was already in a bad way due to pain, some of it is residual effects of my abusive childhood.

Some of it comes from feeling violated at having to see another doctor, since my service animal makes me unworthy of another. Some of it comes from this post on Feministing.com. I do not care that this game came from Japan originally. That does not make it better. I do not care that their society has a history of subjugating women, so surely all of their rape fetish bull is perfectly acceptable. Not to me. I want to reach out to the women of the world, for an uprising. It is in this moment that I state I am a feminist, in the definition that states I am pro women’s rights and equality, I am pro disabled equality, and I am pro mental health equality. I want to be healthy, I do not want to feel the edges of Victim burning at me again and again when I skim the internet, go outside, or even sometimes when I try and think of a happy moment. It is always there.

I am not the cause of my own rape. How can I be at fault for it? Yet games like this propagate the victim is at fault mentality. I remember when I turned my neighbor in. He was molesting me during the same period when my father decided to rape his mother allegory. I remember being asked by the prosecutor, at the age of five, if I wore short skirts to turn boys on. I didn’t even know what that meant. I remember, however, the after effects. I rejected my body, myself, and I tried to become a boy.

This attempt at maleness included trying to cut off my breasts when I was thirteen, shaving my head repeatedly (and discovering that my head is very lumpy) as well as rejecting my identity. I could not be Rebekah. I had to change my name. I did, as an adult. I found a name that fill sme with the sensation of security, health, and the desire to be happy. I do not cringe when I hear my name anymore. I never out grew the after effects of being raped. I was repeatedly assaulted through my life, and this was also used to overshadow real medical problems.

When I was eight years old my mother and father sent me away for hypochondria and Bulimia. It took adult hood to realize I never was bulimic. I also have a great deal wrong with me, and none of it is in my head, except what neglect and trauma put there.  All of my current illhealth cannot be attributed to the childhood neglect, but, a majority can. I am an advocate for anyone who needs it because there is so much to choose from. How do I choose between mothers and their need for proper nutrition, childhood health awareness, Celiac Awareness, Rape is Bad Mkay awareness, and the awareness that as a wheelchair user I need a door that is wide enough for me to not scrape through.

I am in tears today from pain, physical and emotional.  I am a woman. I am 24 years ago and it has been 11 years since my father last raped me. I have since seen him and he cowers with fear, he actually pissed himself when he saw me using a walker and fled in terror. I am not someone who causes fear but, I am a survivor. I was a victim and when I tried to say something, when I found out I should, I was denied that right. The district attorney felt that my case was not compelling enough because I was a mere child and had been sent away by my rapist for not being exactly what he wanted. I was denied justice, and I know my assailant is out there.

Knowing he is afraid of me doesn’t take away from being afraid of him. It does not take away from the sensation of the little hope I had being crushed because I wasn’t worthy of the time to take a bad guy off the streets. It doesn’t make it alright.

I hope whoever reads this finds either peace, awareness, and the understanding that if they themselves are a survivor of rape, abuse, or anything at all, that they are worthy. I understand as an adult why so few women report rape, when it is always the Victim’s fault. Eventually I will write more on my experiences with the mental health system as a child. I will write about my diagnosises, and the secrets that I am not sure my biological mother wants shared online. Someday she will google me and will discover that I am not the all accepting child she still perceives me as. I do not take the burdens she places upon me. I leave them behind.

I was about to submit this when I came across this in the comments on Feministing.com, another link. Amazon pulled the english version of the game, though it is still availible elsewhere. I am shaking with relief and rage. How do we protect our children when things like this pervade? What is to stop this from normalizing rape in our world? It might. It might not.

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