The Cripocalypse (Trigger Warning)

I just woke up, two hours earlier than normal and I have had a vision. A vision of what the privileged folk who refuse to see me as human might see. In truth I was thinking about my father, and how he died. I then realized he suffered for over a year with a bad heart, which means I really need to be careful and have mine checked. I will. My doctor,w hen I tell her how he died will step right up and lob referrals out into space if necessary. My father was one of the most evil persons I ever met. His level of hatred wasn’t just his children or wife, but every man, woman, and child of color, or who was independent, but especially those that over lapped. He told me often about how disabilities worked. None of it was true, and thankfully I discarded his notions before my own disabilities began to force their way to discovery.

The Cripocalypse:
It begins with one, one gimp who refuses to walk. They are just lazy you see but laziness catches like disease. Soon his children refuse to walk. Then they begin to use wheelchairs. Sure some folk might actually need them, like the veterans who let the enemy blow off their legs. After that, come the walkers, they will walk but not if they can’t lean on something. Can these people be more lazy? Not only are they lazy but all of the cripples are mexican or black. You don’t see many white cripples, and if you do they had sex with a (insert racial expletive) cripple and caught it. That’s right, wheelchairs are contagious. Someday, every man will be in a wheelchair, unable to move his body because we didn’t kill the damned cripples.

Yes, he was a bastard. I once made friends with a girl in his apartment, after he and my mother split but before the divorce. He lived there a year before he decided to see who I was playing with when I should have been cleaning and making his dinner. I was only five, but, I was a woman and therefore I was to stay in the house like his personal slave. This girl, I think her name was Jasmin, to me was absolutely wonderful. We played with her dolls, her parents did not approve of Barbie and her stereotypes. In fact her father was the person who defined that word for me. I thought it meant something as innocent as having a newer stereo and an older one.

They even fed me most of the time, for when it was Visitation Time my father made sure to either not show up, or to use my body as he wished, then discard me like trash for the rest of the time. Jasmin didn’t mind that I was afraid of her father at first, she thought it was funny until he explained it was sad. These people were the most accepting people I had ever met. The only truely accepting people. Jasmin and I were playing in the stairwell one day when he woke up, dkscovered I had made pancakes that had gone cold and were slightly burned, and came out to punish me for being five and not being able to cook the food he liked.

I will not describe his physical assault, but I was not his only victim. This was the first time I ran from him. I ran to protect my friend, as he screamed racial slurs. You see Jasmin is black. I have no idea where she is now, that was the last time I saw her, due to my father’s violence against her family. I thought she was beautiful, and I wished my skin was dark. I am as pale as she was dark. She had the darkest skin I have ever seen, it was also luminescent, like looking at a person made of obsidian. She gave me my very first hug. That was how we met.

I was crying in the stairwell, and she and her father came home. She came up and just hugged me. Then we went to play. I do miss the innocence of youth. There was still innocence you see. There were stolen moments of absolute joy, before my father found out. When he attacked me and my friend, we escaped him. I knew I had to go back but I was willing to die for my friend. Her father wasn’t home, we were both alone but we dove through that apartment door, they were our neighbors, closed it, locked it and listened to him scream about how I was going to become a black woman.

Jasmin was also the first person to show concern over bruises. Despite my conditions I do not bruise easily, I never have. My father had also had enough other children to manage beating on us without bruising as much, and rarely where someone might see. He was calculating in his abuse, to make it harder for us to tell anyone. The worst abusers are the most talented at that. The last time I saw Jasmin, I was so afraid that my father would kill me. I even told her father that. I wish I had been smart enough to take his offer up. He offered to let me stay with him until my mother came.

We did try to call her, but, she was busy. My older siblings had refused to stay with Steve, my biological father’s first name, and I was alone except my friend. The police did come, yet they ignored the fact that even his daughter was telling them he’d tried to hurt her friend. This was a defining moment in my perceptions, when the police told Jasmin and her father, to send me back. They stated the Department of Child Services would be out to inspect his care of Jasmin, but surely my father was not really hurting me. They targeted them because of their color.

Often that is the day when I see my innocence starting to disappear. I had so little chance to be a child, but with great joy I remember every moment I had with Jasmin. I remember the utter innocence to be had, before I was taught to hate. It never took. Maybe it is living in New Mexico, where the Latin@ presence is so prevelant, maybe it is the fact that Jasmin and her father cared, or perhaps it is the effort I have put into bettering myself, rejecting the lessons of a false father.

The Cripocalypse is false. I know my disabilities are contagious via genetics. If I could have one last moment to look him in the eye again, I know what I would say. “Steve, I do not respect you. How can I respect someone so close minded as to abuse their children for existing? How can I want you to live, I really was hoping you would die sooner to better the world. You hurt me, and I know you will never care. You just feared being alone when you died, you feared it and none of your children will care when it happens. I am a cripple, who likes persons of color, who likes anyone she meets until they prove they are not worthy of it. You taught me horrible things, to steal, to lie, and to beat. I reject you en masse.”

He is not the only bigot who fears the Cripocalypse. So often people try to hide the disabled, the Persons of color, and yet, isn’t color the most important part of a painting? Art screams for diversity, and the privileged persons always claim to love it. I too wonder, how many more people who hate have died, or will die in a state they most fear?

Does Super cripple help forestall the Cripocalypse?

Z slashed through a shirt to reveal Superman or Supergirl's uniform

Z slashed through a shirt to reveal Superman or Supergirl's uniform

Firing your Doctor

I followed a link in a blog and it lead me to Alas, a Blog. I found there a well written essay on undiagnosed chronic pain. The focus is on women and is intersectional because it deals with discrimination and medicine. As any disabled person knows, doctors do not always listen. It is easier to get a diagnosis when they are fresh out of Med School, but that diagnosis can be wrong via wrote of inexperience. I have written two other How To posts, and this is the third. How do you fire a doctor?

Step 1. Determine why you do not feel you are recieving adequate care. At times this comes from a doctor being frustrated that you are not magically cured of your congenital issues, and then losing their effectiveness. Other times this comes from sitting in the ER for three days wishing you could just get some help, being told “No drinking or eating, the doctor might need to operate” and being told that they can see nothing wrong with you, without tests.

Lets start with the latter first.

Step 2. Become the Bad Patient, Angry Cripple, or Annoying but Empowered Patient who knows their body better than their doctor. Most people when seeking medical treatment have a vague idea of what is going on already. They know where it hurts, and yet it is not really their job to know why before they get to the doctor. Most people in the Emergency Room are often disoriented, queasy, and focused on a fast cure. That is the tenet of the ER. When you do not get your care you must ask, as calmly and politely as you can, “I want a second opinion, can I please see another doctor?”

Expect anger. No professional wants to be second guessed. None of them like it, but some will gladly send you to see someone else.

Step 3. When they decide to ignore it and try and send you home, you might need to call an advocate. If you are disabled it is easier to find advocates, but if you are able find someone who is coherent to help push for your needs. This step is best done before you are in the ER, but, sometimes you can find a patient who knows how to handle it and is willing to help you. This advocate will help you repeat your request for a second opinion over and over until you finally see another doctor.

Step 4. If you can, remember to breathe between each step, each sentence, to try and retain a claear head. It is horribly annoying but remember losing your temper will make it worse for you, and no one else.

Step 5. IF you are in an Emergency situation and are at risk of death, DO NOT GO HOME. You need to stay there, even if they want to send you home. You might need to sign in right off, after leaving. If you are uninsured this can raise your bills. This is horrible, but, if you are in danger of death money is not an object.

Returning to our first scenario, firing your Primary Care Physician:

Step 2. Write a letter to your doctor, you are not sending this letter but you are detailing out why you do not want them to see you any longer. If you are insured you might need to write a letter to your insurance explaining these very things. You will have to explain to your new doctor why you left your previous PCP (Primary Care Physician) or Specialist if they are in the same health care system. In many cities one stands above the rest for their level of care, my personal choice is to stay with in the system I know and trust may differ from yours.

Step 3. Try and find a list of approved doctors with in your insurance, if you have insurance. If not, then, this step still applies. Find a list of doctors. Depending on how you work you might want to contact your local medical review board for a list of physicians with complaints against them. In America this is legal, if you are not in the US, you can still find this information. Some of it is available on the internet. If you still trust your previous doctor, try asking for a recommendation.

Step 4. Write a list of your known medical complaints, when and where you were diagnosed, if you have any preexisting conditions, and write a list of expectations for your doctor. Remember to stay reasonable, you cannot expect your doctor to do anything that goes against their personal morals or professional morals.

Step 5. Make the appointment. If you do not feel safe, do not stay in the appointment. You have freedom, you can leave at anytime. IF this is the case, start at step three.

There are other times you might need to fire a doctor. Very rarely have I said to a doctor, “You are fired.” I have however, said it most in the ER. Remember, firing a doctor does not black list you from treatment. It does not preclude you from proper care, and it does sometimes make a difference.

Your pain is not in your head. You can find an answer, do not give up. Remember, there is no such thing as Hypochondria. You have the right to proper medical care. If you are uninsured most hospitals have payment programs, or will even waive the cost if you are unemployed or low income. No money is not an excuse for a lack of care. In the US (sorry I just do not know the other countries laws well enough) you are guaranteed medical care in an emergency, and can often obtain it outside of one.

Friendship

In the last few days I have been assessing my friendships. I do this periodically and for the first time in years I have not felt the need to discard a relationship. This sounds cold, I discard people who I no longer desire in my life. It might be an action that hurts feelings yet, that is usually the impetus for cutting someone out. What makes me assess my relationships? Need. I have needs that if my friends cannot meet causes issues.

I see myself as passionate, some will always find me abrasive. I am capable of great anger, but few people even acknowledge this. I am supposed to be quiet, docile. I fail at this. Docility is death in my world. My world is not often the world others can percieve either. If someone expects comfort from me, they may not always get it.

Assessment comes from altercation. This is human nature. My dearest of friends are years long relationships that I foster and tend. Some of my friends barely qualify by the standards of most. I do not see them for years, or only in the text of the internet. This does not mean that they are not friends. To me friendship means communion, sharing ideas, and often healthy debates.

Last night I cussed at someone for the first time, he and I disagreed. He desired comfort. He needed it. He also should know by now (and admits this) that I am not a nurtering type in the traditional way. I do offer comfort, but my comfort isn’t being held to my bosom. It is instead at times a reprimand, other times a reminder, or information that they need to comprehend a deed. My friend has made some wonderful changes in his life based on these comforts.

This conversation lead to the topic of Motherhood. The most underpaid, under appreciated and undervalued position in the world. My views on that are changing. I did not value motherhood at all when I woke. I did not see the truth about it, which I do now. Mothers are not always those who give birth. They are those who teach you, who shape you, and who truly nurture you.

I should have been aware of this before, noting that my own biological mother gets a two word title, to remind others that she is not a mother in my own eyes. She is unaware of this. I am afraid to tell her, because she will likely hurt herself. I have mothered her too often for me to comprehend the value of true motherhood. I am working on it now, struggling to appreciate the true mothers.

I had a teacher in school who went over the line of Teacher into Mother. When I ditched school, I went to her house, ate her food and played with her cats. I had her permission to do this. She saw a need, in a child who was so bored in class that she rarely paid attention, often beat on the other students or worked to hurt their feelings. She helped me grow past my torment so that I could help others. She is not why I tried my own hand at teaching. She is why I survived middle school. My teacher was also disabled. She told the story at the beginning of every year and if any transfer students came in.

She had not taken the medication a doctor told her she needed. She had strep throat and ignored it, and as a result the infection damaged her kidneys. She had a transplant and the side effects of the medications left her weak. She often used a wheelchair because her aging body was just not good enough. She also was known as a cruel teacher, harsh and strict.

She is not the only teacher I had who was known as either the crazy cat lady, a cruel person, or as the meanest teacher alive. Three spring to mind, all of them women. They had standards. That was it. Their classes are those I recall in first Elementary School, then Middle School, and finally High School, where I cared what I did. They are the classes where I actually did the work.

They also shaped my expectations of friendship. None of them told me I was bad for not being able to connect with people my own age. I can do that now, but, when I was young my brain was trapped between too many medications meant to control me, survivng other abuses, and dealing with a body that failed me. I also had to deal with being told nothing was wrong with me, except of course being crazy. No one wants to be friends with the crazy kid, the fat kid, the girl who doesn’t run because it dislocates her hips. No one wants to be friends with someone who is different.

I am still different. I cannot be normal. Normal is a misnomer for boring. None of my friends are normal. They are all shapes and sizes, and all are the most beautiful people I know. If I consider you my friend, it is a rare title. This does not mean I will not associate with people who are not friends, but it does not mean I actually respect those people.

I spent years mastering control of my emotions, hiding who I am. Now, I am mastering being myself. If you cannot handle the truth of my soul, you cannot be my friend. I am a treasure.I am not a burden. Are you my friend? I hope so. None of the friends I have right now have ever failed to measure up to my expectations. It is not always true that people with high standards are lonely. I am fulfilled, happy, and I truly appreciate my friendships.

Why I did not turn to “God”

I am too tired to sleep. Instead I decided to read some disabled blogs. I am not a Christian. I rejected Christianity a long time ago. I do not reject Christians but I do not share your beliefs. My own religious choices come from exploration, to seek what is right for me. Part of this comes from the fact that the God of the Christians was used as a tool to facilitate the abuses I suffered. “God hates you. You must die to please him.” “God hates women who have short hair, and that child has short hair. She must have the devil beaten out of her.”

Two out of thousands of excuses that their God fearin folk used to beat a child. They used god as a reason for why I did not deserve to eat. A reason for my mother to stay with a man who wanted her dead. Before I was aware of my disabilities, I heard often how a disabled person found god. I keep a Jesus figure in my couch for occassions to “find” him and make the conversation stop, with a good laugh.

I do not want to offend anyone, but, I am offended by disabled people always being portrayed as God Fearing White Men. The man who saved me yesterday was Black. I felt comforted by his presence, as if two strong arms held me. Does this make god a black man? Some say feelings of security all come from god.

I am well aware that this conversation is a bit controversial. I respect many people of many religions. I read a blog by Wheelie Catholic with great regularity. I just ignore her posts that are just about god if I am feeling uppity. I am leaving god as a lower case because I am a polytheist. I believe in multiple dieties. Not every person comprehends the notion of one omnipotent and infallible being.

I cannot believe in one god. Instead I believe all religions come from a root need. I need something to put my faith in. I still pray, just to the gods that my brain can fathom. Religion begins with one person, be they a prophet (IE Muhammed, Jesus, Buddha) or a Seer. They see this unadulterated light, they feel guidance from it, and explain what they see. People see the light through them.

Eventually Prophet Seer dies. How do the people still reach the light? They take paint to the window that they looked through, trying to outline what they remember, and what they themselves can see. Over time, through generations, people might add things that are not there. They might try and demonize people who do not see what is there from the same perspective. They might forget some important lessons.

This perspective has let me help people who ARE Christians. I respect your religious choices, and expect the same respect. I may not always have my expectations met, and I am a known idealist, but I will not discriminate. I am reminded with this line of thought about a woman who discussed her life with me.

She was healthy, not disabled, but depressed. She was going to commit suicide and had come to a bookstore to find how to books as well as books on how to heal after someone you love commits suicide to leave with her body for her children. She had sent her disabled child to visit family, so that she would not be the one to find her. She felt drawn to me, she could see me in the shoes of her daughter, productively assisting someone else.

We talked for several hours about her life, and she wanted to commit suicide because she felt helpless. She thought if she died, her daughter could obtain the insurance money and pay for her medical treatment. I debated with her on the invalidity of this thinking, I shared access to resources, and she left with books on how to train cats. She is alive, right now. Her daughter did not lose her caregiver or her mother.

Isn’t suicide verboten to Christians? Don’t you go to hell if you commit suicide?

As if this wasn’t controversial enough, now I am going to bring up Eugenics and Hitler. I am against human euthanasia. I never thought about it, before Teri Chaivo. I was too busy struggling in my own blind existance and praying I could survive. When I heard about how she died I wanted to scream. I wasn’t positive that no one was home in her mind. I felt a sick certainty in my gut, as I had felt the snap of bone in my back, that she had felt each and every agonizing moment.

I began to debate in my mind about the value of euthanasia. It is wrong. I do not need more pressure on me to just die. My own nephew asked me why I am not dead. I explained to him that just because I hurt, doesn’t mean I do not feel joy and that I want to live. I have a lot to laugh about. I have a lot to live for.

I have considered suicide rather recently, due to the pressures of environment. I took away the abuser, and I haven’t thought about death since. I am still fighting to get my pain meds. I am facing another two month stretch without pain medication and this is frightening. I don’t want someone to decide that because I am aware of my rights and will fight tooth and nail for my civil liberties to be respected, that I should die. I do not want people to be put to death or denied treatment because they lack insurance. I was denied proper medical care and it disabled me further, doctors ignoring broken bones left me in permanent agony.

If you help someone die, add pressure to their lives, or even neglect them to the point that they must starve, you are a murderer. Our government is full of murderers in my eyes. When I think on this, I question all of these prolifers. Why is it that they can fight for an unborn baby who may or may not live, but they fight FOR the right to kill me? Most people who contemplate suicide have a reason they feel despondent. Usually there are ways to remedy this.

There is a woman out there whose name I do not remember, I heard about her hunger strike, to fight against improper care. First and foremost, the media victim blamed her, soft peddling the facts. Secondly, problematic patients are often given substandard care. No extra care is given for those with cognitive challenges. Often, when someone reacts with violence they are triggered.

This all forgiving God I hear so much about, the one who disables people for their own good, the one who lets children get beaten in his name. I cannot fathom his reality. The faith of millions of people, lead by a bigot (that would be the Pope), has been open to question. I am not so blind as to presume all Catholics agree with the Pope or even respect him. I am aware that the world is shifting, truths are coming out about the history of the Catholic church. Truths are coming out everywhere about reality. We are on the cusp of great change.

I do not feel hope when someone tells me how they felt god. I have felt my gods just as equally. I do not want to be told I have to be religious or even faithful now that I am disabled, but I do want people to question the Euthanasia debate from a standpoint of their personal religion, as well as a social one. History shows the danger of Eugenics.

Hitler was a gay disabled dark haired Jewish man. He hated himself so much that he tried to eradicate all disabled, gay, non blonde persons, many of whom were Jews. Eugenics were his tool. Washington and Oregon both allow for human euthanasia, and I can tell you now, other states may follow. Are we really going to allow for weak laws that do not require psychiatric involvement (as far as I know, I could be wrong) and for people who are “terminal” to die earlier? It may not sound bad to you, but, what does terminal mean?

I have heard it means a condition that will kill you. I have heard it is an uncurable condition. Does this make spinal cord injuries TERMINAL? Who defines terminal? I often disagree with medical professionals assessments of the condition the disabled live in. I lived in a very dangerous environment, and many people remain blissfully unaware that a respected person is actually an abuser. Many people ignore what to me is obvious. What if a person who hates the disabled comes along and determines that terminal means you are not white, have any physical ailment including Athsma, and must be redheaded? The end of the world comes.

One arguement for Euthanasia is that people are suffering. If someone is terminal, (definition meaning six months to live) they will die. Not true. My aunt has lived with cancer for over 25 years. Before I was born she was told she would not make it to the end of the week. She is still here, she is healthier than many people I know and she IS terminal. She will die from cancer eventually.

Arguements for Euthanasia also imply that the able bodied should have the right to tell me how I feel. You may look at me and see a woman shaking from pain, in a wheelchair who must surely hate life. I feel utter peace. Often, I find my internal balance can over ride the burning pain in my body. When I gave my speech today, I felt energized, I felt alive, and I did not feel like a disabled person. I felt like ME.

Euthanasia is bad. Some people may want to die, but, should they? Euthanasia devalues life itself. Do you think you should be put to death for your challenges? Do you think that if you break your back you will want to die? You might, but, you will over come the stupidity of people who ignore your rights. Euthanasia is prevalent with animals too. We kill thousands of animals, and people protest this. It still happens but there are some against it. Let’s not risk shelters full of rejected humans being lead to the slaughter. Can anyone say Soylent Green?

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!

Just Die Already

Tonight while shopping for clothing at the Thrift Store I had two experiences, one uplifting the other utterly depressing. Lets start with the depressing one, that way we can end our time together on a happy note. I was told to just die.

I was struggling to check the size of this really sexy green dress, alas it was too small or I would own said sexy green dress. I asked for help from the employee nearest me and while she was great, the hispanic man sitting on a couch chewing his cud looked up and said, “You can’t do it yourself? Just give up and die.” He said this without blinking and just resumed staring off into space. The poor employee fled, she wasn’t sure how to handle this and likely could tell I was about to go KABOOM. Few things make me want to yell, but being devalued as a person who should just die? I had to ask why.

“Why would you say that?”
“Life ain’t worth living if you can’t walk. You have to be sad, so just give in and die.”
I ranted, in the store, and half expected my significant other to come and ask why I was so pissed. I did not yell, or he would have. I haven’t told him yet either. I want to make sure the man is gone so he doesn’t get beaten down by my man.

How do you respond when someone devalues you to the point of declaring that you should be dead? I get angry. I told him this. My legs may fail, but, I have the energy to shop, sing, and actually contribute to society because of my wheelchair. I am happy, I have great sex, and every reason to live that he does, maybe more. I managed to not cuss, trying to remind myself I have to set an example.

I also asked this man if he had forgotten about Hitler or just wanted to sound like his best friend. I am not stupid, I am not weak. I am full of fire and the spice of life. I am a person. I have every right to live, just as the young man who followed me around that store with Downs Syndrome does. I asked the man too, why he was sitting on the couch wasting aisle space, since I might need to roll past him eventually. “My feet are tired.” That was when I smiled coldly, and snapped out, “Mine aren’t. I think I am going to go and look at shoes, since mine won’t get worn out. Sorry your feet are tired and you want to die, but I can go eight miles per hour on this thing, I can go back to the future.” I went then and found my caregiver.

Could I have handled that better? Probably. I have issues with being told to just die. My father spent my entire childhood making sure I thought death was the easy way out. I am also feeling a bit depressed due to the acceptance stages of new disability and a side effect of wanting to confront my mother, but not being able to do so. I am aware eventually she will read my blog, but I plan to talk to her before I give her the URL.

Some of you may comment that the disabled having nothing to do with Hitler. Sorry, but it wasn’t just the Jews who were killed. Disabled people, persons who were not just white but of mixed race. Disabled people, persons with even manic depression, and sometimes someone who pissed the Reich off were all labelled. One of the many labels I would’ve worn in the concentration camp was Blod or German for stupid. A black square with white letters. I never will forget, neither should you. Yes, genocide is horrible, but, trying to eradicate disability or assuming that all disabled people are second class citizens? This is just as horrid. I am afraid of the future, I am afraid that assisted suicide will become legal, and that more pressure will be put on the disabled.

This happened after my uplifting moment, but I am excited about that. I was in another store, hanging on tightly to this high fashion top that was going to run me four dollars. It’s in style right now, my size, four dollars, and not puce! I had to have it. My rental scooter started bucking like a Bronco. I lost total control over it and almost ran through a window. A man in a wheelchair blocked my exit point with his body, thankfully neither of us was hurt. I looked up and I recognized him from the Veteran’s Shelter I used to volunteer at. This shelter is just for the disabled veteran. He has grown in health and was looking so happy. He did not recognize me. I thanked him for his service to our country and for saving me.

He expressed gratitude at my understanding the sacrifice. He became a para when he took a bullet in his spine for this country. He expressed his frustration at seeing any other person, especially a young person in a chair. We talked, and I told him I sacrificed my spine for children. We communed in the honor of life itself. He told me it was good to see someone who wasn’t down about their chair. He’s in a nursing home because he cannot care for himself and although home health care would likely be enough, Medicare denied him this. We exchanged information, and I hope to help him go home again. He fought so hard before for his home. I think he recognized my name, but, that does not matter. What matters is that he exuded strength, saftey, and honor.

He honored me by risking pain to protect me. I am grateful for that, how can I begrudge someone a sacrifice? I focused on this man when I wanted to lose my temper with the second fellow. I know better than to yell, but, it would have felt good. There are so many times when I am told I am a second class citizen. I am first class. My significant other tells me he loves me because I am a Lady, not just a woman, but a Lady of the highest degree. He reminds me why I must maintain my dignity, and he does not see it as shameful for me to cry.

I am going to live a long time. I must, because I have so much to offer this world. Bicycles are much like wheelchairs too. They have two wheels, they ambulate for you, leading you towards a destination. The only difference is wheelchairs come inside and are differently shaped. You say our tires are dirty, I say so are your shoes. You say we make the aisles wide, an inconvenience for you who wants to over stuff your shop. I say, aesthetics. You say I am a burden to society because I am currently not working. I say society and it’s bigotry is a burden to me. I should not be assaulted when I go out because of my wheelchair.

Today is also the first time in a long time I looked at clothing that will show off my magnificent bosom. I have more than ample cleavage, and, I am done hiding every bit of it just to comfort people who expect every woman to be shaped like a hanger.

I am done with self slut shaming, and I am done with conforming to stereotypical fatty clothing. I am fat, but, I am also gorgeous. How can a person who is happy be anything else?

Do you deserve to live? I agree, you definitely do. Lets live on together in our high fashion and accessible world.

Wordabration 2009

I am a word junkie. I cannot escape them, and they are what I see the world in. I do not see you as colored flesh blobs, I see you as descriptions in text of colored flesh blobs. We cannot have lyrical music without words, speeches, television, even silent films needed words to describe their content. Blogs especially are made of words.

Tomorrow I am giving a speech called Wordabration, it is a speech to introduce me to the Toastmasters’ group. Well, I am going to put words into a context of my existence. I cannot give you a pre-written speech to read, so, when the video is up, I will post it in the blog. In the mean time I wanted to share this video, it uses words to show the entire glut of change we face. Skynet is coming, Bluetooth is the key.

If you know what the music is, I’d love to. It stuck in my head and has me all tingly, with words. Why are words so important? As a culture our language is what gives us expression, and although not all of the words in a language are positive, they still are the keys to  understanding an entire culture. Without the Rosetta stone our understanding of the ancient world would be not even a tenth of what it is today.

The language of a legal document, or the language used when you are mirandized if you are arrested matters. Language is the single most important part of a culture. Language is used to discriminate too, if you do not have a mastery of the language then people presume you are stupid.

I love words. I truly do. Wordabrate with me. What is your favorite word? Mine is Onomatopoeia, a word describing sound. Sounds and words are the same, that is merely proof.

I woke up today ready to resume writing my novel, and, so full of word steam I felt as if I had exploded. I broached new territory for me,describing adult situations in my book. I decided to write the first draft without being certain who my audience was, and today I woke up knowing my audience. The power of my words grows exponentially. I can hardly wait to edit this puppy!

By the time I go agent shopping, I doubt my book will even resemble the mess it is now. I am showing not telling, there are gaping plot holes, inconsistencies in names but that is what a first draft is for. All of the variations of my characters have to melt down into a single and final variation. My Pirate dragon warrior princess has to become a person, instead of a pile of words, while being in literary form. Only words can manage that.

I do not cry over movies often, but, even comic books can make me weep. Words are the most powerful weapons in the world. They start wars, they stop wars. They make people rich and poor. They give the perception of rights, and they can even train those who hear them to believe certain things. Words are used to label people, sometimes to their betterment and most often to their detriment.

Words uplift, they demean, but most of all they are just words. Wordabration means, celebrating words. You can participate in March, my month of Wordabration, by reading the dictionary, read just one page a week, learn a new word, or even just acknowledging what words have given you. They bring you this blog, your news, even if you get it online or from Jon Stewart, words do that for you.

So, here is a celebratory blah blah blah. Let’s go Wordabrate!

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