Reality of Choice

It is unfair that we must bear a responsibility to take up slack for people who want life spoon fed to them. It is wrong that we must be better advocates than anyone else around us. It is wrong that we must fight for our basic human rights constantly. No one chooses to be disabled but here we are, fighting anyway. I am tired of wearing the Super Cripple label. I am tired.

Today I was reminded that it is important to be human. I didn’t know I had been working on being Super Perfect again. I do this without thinking. It comes from the need to survive. Growing up without a diagnosis for any of my differences including Autism left me with a need to be extra normal. I used to fail on purpose so that no one would hate me for being smart. They hated me for being me anyway.

I have spent my life trying to blend in with the able bodied and normal. I have never quite managed. Even when I am trying to seem normal, passing as if the only disability I have is my spine, something other shines through. Maybe it is the way I wince at something no one else can hear. Maybe it is the way that I curl my hands up and hold them at my sides. I try to not. Maybe it is the way I look at people, without looking at them. I haven’t made real eye contact in years. No one notices… or do they?

The first paragraph came from my responding to a post on another blog, the blog that forced me to begin writing. It is a post that commiserates with the service animal users, and offers support. Every day every disabled person has to advocate. People tell me often to not get angry. I am tired of not being allowed to have a real emotion because it might upset the normies. I really want to cuss right now. I want to let those words fly out because that’s what the normies would do. They use weird language, from my vantage point. Awkward tones, words that can make less sense because to them the idea of making sense to someone else is ridiculous. The idea that someone could be prejudiced because you do not use a word improperly is foreign.

Today was a good day, if exhausting. I woke up to illegal action by my apartment. The apartment is supposed to give a twenty four hour warning before entering my home. We had three. We also had to avoid being here due to the risks of exposure to allergens and their pesticide use. William spent the entire day in a carrier, just as panicked as I felt at the squeal of brakes, the cacophony of traffic. Sprite was her usual self, thoguh she panicked a few times too. My head still hurts from being next to a bus that had squeaky breaks. I can still hear it, over the TV, over the silence if I turn it off. There is no choice for me there. I cannot escape the overwhelming sounds. I cannot escape the pressure in my head.

I cannot escape the texture of my blanket. Tonight it feels like sand paper. Yesterday it was the softest cloud. The reality is, others have it worse than I do. Others cannot coherently string words together to express themselves. Lately I have been wondering how much “real” autistics suffer. I have been wondering if any other autistic person feels as normal as I do. I don’t feel like I am anything but normal. Anyone else knowing me might not think so but that is due to work.

The reality is I spend every day choosing between fighting for my civil rights or acting normal. I can’t do both. If I act the way that the dominate, able bodied men want I give up my rights. If I do not fight for my rights I will starve. Today I found out that Section 8 is no longer taking applications. This means thousands of people are going to be homeless. They are trying to close the program. Don’t we need more help with housing not less? I am tired of living in fear. As a minority, the disabled face their funding being cut. Do we have a choice? Yes. Is it a good choice? No.

What is the reality of choice? The reality of choice is simply that there is no choice. If you are disabled and able to push for legal accommodation it is a duty. You might not like that idea, but, think about it. Every time someone oppresses you, they oppress a dozen others. Every time you fight back and calmly advocate for your rights there is a benefit, there is a decrease in the oppression of others.

I do not know any disabled person who is unaware of their oppression. Those who face the fear of institutionalization. Those who have the memories of it. Those who try to ride a bus. Those who try to buy groceries. Those who wrok. Those who want to work but are not able to train for the job due to discrimination. All levels of intellect and worldly awareness. We all know we are being oppressed. We might not know the words for it, but the feelings are there. We all feel the changes when someone becomes educated as well. We all benefit from even one moment of advocacy.

I often hear parents disparaging their disabled children with in earshot. Sometimes they do not bother to try and hide their loathing. They all want a cure. This is very common with autism. The people wanting a cure want me to die. I would not be me without my autism. I am not sure what the suffering is that I am supposed to endure. All of that suffering comes from outside. Some of it is not actual violence against my person, some of it is just the experience of the world itself. It can be painful. Most of it is however the doing of man. My parents sending me away because I was different, drugging me to try and make me appear like they wanted. This was painful. It still is. I am familiar with pain. I am not finding any specific pain that Autism caused.

Some people may feel pain. I know that some autistics are violent. Some harm themselves. Instead of curing the entire mind, throwing out the person, shouldn’t we focus on trying to help them to learn how to not hurt themselves? Spending years without a diagnosis because I could do what it took to not die, I could blend, my perspective is different. Who would I be with a diagnosis and proper developmental treatment?

That is the reality. I chose to blend in. I choose daily to advocate. I choose every moment. I am hyper aware of my choices  but are you? What is the reality of the choices you make? Do your choices oppress someone else? Do your choices free someone else? What balance can you offer the world by making good choices? This is the reality of choice.

Hidden Abuse Take Two (Trigger Warning)

Abuse is something that is running rampant in our society. I think the “right” to abuse is not just reinforced in some religions, but it is reinforced in other ways. The media often shows women getting hit as punishment, or if male and females are both under assault, the woman gets hurt worse, and it is the man’s duty to avenge her. There are very few deviations from this formula. I am writing a deviation, at least I hope so, for my own novel. I realized that I am exploring what it is to be a survivor in my writing.

I am not going to give the plot away by much, but, there is an exploration of rape, incest, and the confrontation of an abuser in my story. That is a big portion of it’s core. This is a core part of what has made me who I am. I have confronted every abuser in my life, and although it is extremely painful and has ended badly in most circumstance, I was able to show them that I know what they are.

Through this exploration of what abuse is, and my constant thoughts and warnings I have come to see that the media lies. Abuse isn’t just when you are beaten bloody. That is the most obvious abuse. That is the abuse that comes in at the end of a very long escalation. Abuse starts small.

My first abusive boyfriend actually helped me find my name. At times I feel weird answering to Kat, because he was the first to call me that. The spelling and intention is different yet the association sometimes pops up. The abuse with him was the smallest. It started over food. I have huge food issues, and have had for most of my life. He would start out with our food order. I would order something meaty and he’d look at me and say, “That will make your cholesterol high. Don’t you want a salad?” If I refused to order the salad, at first he would just shrug, but then the comments started to escalate, “Well, if you want to be a fat pig for the rest of your life fine…”

I nearly died when I started to give in. I didn’t see this as abuse. It was not as bad as what I had dealt with before, so how could it be abuse? I didn’t understand. He then began to accuse me of things, little things that made no sense to me. “You are one of the Illuminati, You are the destroyer of worlds.” I thought he’d been reading way too many comic books. He hated them but read them to try and make me feel better about him, in some ways that worked at first.

This was one of my longest relationships, I was hiding my relationship from my family per his order. After all they would surely judge me for dating a person of a different ethnicity. Before you ask, no he was not black. I have been blessed to know only gentle men of color. No single ethnic group holds the buy out on violence. Most of my abusers are men of my own color, white.

I began to miss out on time with my friends. He then started pressuring me for sex. I had decided a long time ago I want to have sex with the man I marry. For some reason this was not the same in my mind with women, I could explore them but men were too dangerous and in my mind hated pleasure with promiscuous women. I was warned that if I did not have sex with him, the world would end.

The night we broke up he hit me. I do not remember much, I had a flash back to one of the worst beatings of my life. I also reacted, I don’t remember it but when I came back to reality I had been hitting him with a frying pan. My face hurt, and he snarled at me, “I am going to rape you, kill you, and then I will have your soul forever.” Those words haunt me. He meant them. He wanted to steal my soul, because in his eyes I had too much personal power.

I called 911, he was arrested, and some of the things I found out about him were frightening. He had lied about his name, he had lied about a lot of things. He was a known serial rapist, and had killed more than one person. He went to jail, and although he is out now my fear of him is very small. I doubt he will try to find me. If he does, I know how to protect myself, and I will call the police.

Looking back, I see many warning signs of abuse. I thought these were normal for social interactions however. Any time you are not allowed to share a relationship, it is a warning sign of abuse. If you are not able to meet their friends or family, that is another sign of abuse. It is a bit harder to feel that these are significant with internet dating, but they are in the majority of cases. If you must stop seeing your friends, it is a warning sign of abuse. If you say no, and he takes that as yes? Get out of there.

There are more signs to abuse, but my brain is trying to flash back now, so I need to stop writing this piece. Abuse is not as hidden as it thinks it is. As a survivor of abuse I have dealt with varying layers, finding each time my brain accepts it as normal, until I finally found my way out of the cycle of abuse. It takes years, it takes practice. If anything hurts you, even if it might not feel wrong it is abuse.

Calling all Politicians

Sometimes you have to pick up the phone and call people. I personally hate telephones. I barely can hear the people on the other end, there is this whine, and not being able to see their faces makes me nervous. What if I cannot hear them? I hate the constant what what whating. It makes me feel inept.

My Person found me a speaker phone, as our cheap little workable phone doesn’t have one, and I was not answer any calls. I just shut down the communications line and went lalalala when the phone rang. I would of course call back if someone left a voice mail, eventually. Some people are important enough to endure the evil phone for. Myself included.

This morning I decided to call my Senators and Congressman to find out what their opinions on Non dog Service animals are. I also shared my need for my cat. This is in response to Obama giving more time before the vote being cast on the DOJ’s pending ADA regulations that would ban the use of any species other than dogs as service animals. The exact regulation in question is “Title III Regulation 28 CFR Part 36: Nondiscrimination on the Basis of Disability by Public Accommodations and in Commercial Facilities.

This is the very regulation that lead to a comments threat and began my Blogging. The first call was the hardest. I dialed the long distance number to Washington, waited for the phone to ring. Instead of a ring a voice came out, “Martin Heinreich’s office.” I froze, then Toastmaster’s instinct took over. After explaining my call I was given a number that would get me faster results. Calling that, I had a conversation with a young man, who is likely older than I am, and educated him on why this law is discriminatory. He became excited, and impassioned. He told me he will fight for me and others with nondog service animals. I found this video at another  blog. The big event showing her stupidity is at 8:40. At that point you are likely to lose any respect you had for this woman.

I do admit some regulation needs to be made with in the service animal laws to protect service animal users from the Fakers such as Rosie O’Donnell destroying the little respect we service animal users get. I am lucky that most people when protesting my use of a service animal hesitate on the grounds of never seeing a cat who is well trained or can handle the duties and tasks given, but, mine is almost always on her best behavior.

All service animals have bad days. Usually Sprite gets one day off a week. Her first day out after her month of serious illness was a hard day, but, she behaved admirably. Indeed, when I started my phone calls both she and Mr.Shakespurr came and listened. Sprite, upon hearing one of the aides to the second senator protest her existence tried to hang up the phone. I barely caught her paw. I explained her, in terms they could understand. “I can’t bend or walk. I use a wheelchair. She can be an extra long arm for me, or if I drop something, I do not have to wait for someone else to get it. She returned my life and independence to me.” I think the last sentence had the biggest impact.

Six phone calls for three politicians later and I feel good. I am going to help them understand that not all dogs make good service animals and some people need alternatives. I used the phrases, “It is discrimination to vote for this bill, what about those of us with serious allergies to dogs? Should we be further handicapped by this?” Most of the workers held passion. They reflected my own zeal and none of them treated me as if I was not important.

I also called the Mayor’s office and for once found someone who was intelligent and understanding about my call. He made a promise last year to train the local police on how to handle an ADA disturbance. I am often reported to the police as if my rights are a crime, and am tired of their enforcing the negative behavior. I am no criminal, I just want to buy groceries and live a normal life. I am now waiting on the return call, there is an assigned person, responsible for this. This is progress.

The added joy, a rarity with any form of politics and telephones, either alone or together, is the joy of telling someone. “Hang on, I am talking with my Senator.” It isn’t getting to say that which causes the joy, it is the discussion that follows after the call about why I am calling a politician. Why is it important to advocate for my rights? To make my voice heard? Because, if I do not speak up, no one else will speak for me.

The Doom Ship

Not everyone gets to ride the Doomship. I ride, others ride, and yet I often take it for granted. What is the Doomship you ask? The Doomship is the Ship of Life, riding towards the birthday of Death. It sounds horribly dramatic and is.

Children born with serious illness are often told, “You won’t live to be 21,” Or something similar. I have a list of birthdays that have passed, my next is another Doom Birthday. When I broke my back, and it was first diagnosed I had a series of doctors tell me that my organs would fail by 25. My birthday isn’t for a few months, I was reading blogs off of the Disabled Blog Carnival and started reading Temporarily Disabled. Not only is this a great read, though with each post I tend to cry just a little for the child who was aching and the pain she has been through. She turned 26 and posted about the Doomship, sailing past into the great unknown.

With Doomship Birthdays past, it is like looking at a precipice of great unknown. I know I am going to live past 25. I am confident only due to surviving so long. These waters are familiar. I am pensive too, due to my Annual Cancer Scare. I get one a year. This time it is my reproductive system. I had my annual blood work done and my white count is high. My pap came back with abnormal cells. We’re redoing them both to verify before any panicking is done.

I waited three years before getting a pap, because no doctor would accommodate my need to not be in their perfect position, or to even help me balance on the table. I can’t do it myself. I need someone else to help heft my carcass around. I know if I do have cancer I won’t die. I will just get over it. My doctor is more worried than I am.

Right now I am surrounded by everything I have ever wanted. Not the things like the toys I never had, but the love I most desired. On my right I have Sprite, the service cat, curled up and purring against my back. She is helping me to not spasm so I can type the words out. My body is rebelling. I have on my left William drooling into my shirt, and every so often poking the keyboard with a paw to see what is so fascinating. He sleeps, then paws then sleeps a bit more.

In the other room my Person is puttering around, doing the dishes after making a meal of my choice. I had spaghetti with sausage meatballs. I haven’t had meatballs in a long time, but he made them for me, tolerating my lewd jokes. My home is clean, my bed is comfortable. My friends and family are far enough away and close enough at the same time. I even have high speed internet to keep me amused on those days when movement is unacceptable.

The Doomship sails on, the waves splash, the thunder crashes, and my life flashes before my eyes, but, it is the life I am living that I am proud of. Not the memories, not the past. It is my future that holds me in it’s sway. I reach for it, sitting in the prow, praying to my gods, listening to the world, and taking part in changing it.

I write something every day, and each time it is self discovery. I discovered I can write non fiction. I never knew I could. I know the mechanics of writing are sound, as I sell fiction periodically, and write it almost daily. It is merely the fear of my life that has held me back. I feared upsetting those with the power over my life and death. I am now the Captain of my Doomship. I mutinied.

So, as I rest, my ship swaying, I look out and see that everyone else is in a Doomship too, they just do not know it. They do not prepare, they do not adapt. They aren’t aware that they have to. Red sky in morning sailor take warning, the storm is coming and the night is humming… wait not for the red sky at night, for on the Doomship there is no Sailor’s Delight.

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.

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!

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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