The Cliche of Anger

I am tired, in massive pain, and yet I still am riding on the waves of fulfillment. I worked an entire week straight. I am taking a few more days to get back to my standard however, and reminded myself why I do not work in a traditional manner. I would have been fired today for being unable to wear standard clothing for one, and my attitude for another. Every action I take, every interaction I am bogged down by references to the past, lessons, and reminders. I hear my mother’s voice most clearly, and that is not something I welcome. I want to be an individual not the product of my family.

I wasn’t going to post until tomorrow but I was reading a few pages over at Womanist Musings. The proprietor of Womanist Musings has recently outed herself as being amid the disabled. She is beginning to run into the challenges of being suddenly unwelcome, invisible, and at times hated for merely existing. Today one of the commenters told her that she should start a civil rights movement, ignoring the fact that the disabled community has been pulling for equal rights for as long as other civil rights movements have been in effect. Before we go on, I want to remind you my dear reader that every single civil rights movement hasn’t ended, and that the fight for equality is on going no matter what your ism is. This reader seemed to think that a few protests fix everything.

This ignores the protests in New York, the individuals who do sacrifice their energy and at times sanity to try and force businesses to comply with the laws, and it ignores the fact that there are those who came before you and I. This is an erasure of our history. I responded with snideness and sarcasm, ignoring for the few moments it took to suggest a hacksaw so she could remove her legs as “easily” as I can get off of my scooter, the voice of my mother. “All disabled people are angry, they think they have rights.” I am aware that it is the events of today that shape the memories that seem to nitpick at us. Before I was disabled my sexuality was most often the harbinger of a Mommy Memory. “Bisexuals are selfish, they just want to have sex with as many people as possible.” Every time I went to flirt with a woman or a man, I heard something like that.

The myth of anger is just that, a myth. It erases the happy moments with friends and family, it erases the moments where competent and open minded people realize that everyone has rights. The myth of anger is often used to subjugate. Stop being angry, so that I can continue to oppress you. That is what I hear. The expectation that an entire group of people must never feel one emotion is ridiculous yet this is foisted on women of color, the disabled, homosexuals, and countless other oppressed groups, all to control us. Anger is forbidden.

Many times when I am smiling, I am told, “This inaccessible area will be fixed soon, we swear!” The tone is always frantic, that hint of “Oh god she will be mad that we haven’t done this yet.” It doesn’t matter that I am smiling and just nod and say, “Great, thanks for letting me know.” The fear of my anger, which is some how more toxic than their anger or fear is there. I still don’t understand it, but, I see this often. The times when I am angry, I am also not heard. It’s enough for me to want to go back to trying to be Super Cripple, but, I won’t do that.

My anger is valid. Your anger is valid. Anger is not a reason to oppress, discriminate, or subjugate. Anger is not an excuse to not build the ramp in an accessible manner, and anger is not an excuse to try to “just get rid of” someone. I am tired today, and I am trying to seem reasonable. My mind is far from reasonable. I am in truth alone, and am having a small tantrum every time I need to get up to move. My fiance forgot to feed the cats, which merited an hour of sitting there whining about how I wasn’t sure if I could do it, I can’t bend, and their bowls are on the floor.

It wasn’t anger that had me make a really big mess trying to feed them either. That was love. They were hungry so I fed them, without bending. (Sorry honey, but the kitties have to eat too!) It won’t be anger that I let him know he forgot either, but amusement. Every emotion that I have is not anger. The lessons that our parents teach us, may shape what we see but it is the choice that I made in my first experience with disability as an adult that showed me otherwise. I chose to not see anger.

It’s really that simple. Demeaning an entire group of people does cause anger. If you fear our anger so much, stop discriminating. If you come near me right this second and discriminate I will show you anger, but I won’t run you down with my scooter. That’d hurt me too, and you just aren’t worth my time or pain.

To my friends, allies, and fellow disabled persons, don’t forget that every moment that we are alive is the revolution for our people. Every time we are seen out of our homes, with our assistance equipment, service animals, and even having issues, this is our revolution. VIVA LA REVOLUCION! Free my people!

Damaged Lives (Trigger Warning)

After the end of this paragraph is an unedited account of my Death. This post contains a Trigger Warning even for those without PTSD. There are graphic descriptions of rape, violent abuse, and I am sharing the day that has yet to be topped (and hopefully never will be) as my worst day. Comments for this post are closed, due to the difficulty in even writing this out. I also am going to take a small break before posting again. This will likely just mean a single day, so check back on Tuesday.   One final note. This is the set of memories that when remembered caused my first experience with being devalued and victim blamed.

This last addendum belongs before the break in my opinion so, here it goes! The DA when the report was filed admitted to me and my guardians that due to the legal wording the Statute of limitations was in effect, and he could arrest and prosecute my father but because I had a history of PTSD he didn’t believe it was worth his time to try and that I was worthy of justice. The Worthy of Justice bit is his. It was my fault for being traumatized. I took this to mean I deserved the abuse. His choice to devalue me as a person and a victim nearly killed me. What was the point of living in this world if there was no justice? It had been hard enough to say something about this to a man, to admit that I was a dirty slut as I saw myself, then to be told my attempt to do what everyone says is the right thing, all the TV adds, all of the adults around me, and even  he himself pushing into my head that I had to tell when someone hurt me… to do their right thing and be told I was not worthy of the actual right thing damaged me just as much.

I have nightmares of that choice too. Even writing about it I feel the emptiness and pain of rejection. The only reason I did not give up? My roommate in the facility told me she would kill my father for me if she ever had the chance. We made a secret pact to kill our abusers.                                        Continue reading

We are Human

I sit here sharing my words with you. You read them, you feel things. I learn from your comments. I am getting to know someone, near and dear she is to my heart. I will likely never meet her in person, and that makes me cry. I will not spoil the surprise because I am going to write about her in depth later. M and I were talking again. I am feeling those consequences from dancing more than I expected, my hips are doing the lambada on their own, clicking when I breath, dislocating if I exhale. The sky is over cast and yet, there is a ringing in my soul, the clarion call for Justice.

In explaining the suffering of this person, she sky dives, she fights for her rights, and she is willing to share what is left of her life in order to make the lives of those she does not know better, I said something that made me pause. “I am American.S he is Canadian.We are Human.” I will fight for anyone who needs a warrior. This is merely who I am. It is a truth. M is Canadian and American. I think he has a dual citizenship, but neither of us know for certain. He is Canadian American. He is also Human.

It does not matter what country you live in, there are silent victims. There is little a victim can do, when they are trapped in a chair, unable to get up without help. When that help is jerked away, so often it is all that you can do to survive, much less fight for your human rights. My Left Foot, a movie about Christy Brown is on. I am listening to it, while I write. While I cry. We are human. Every one of us. It is not a soft thing, this humanity. It is abrasive, fearful, and yet it is capable of much.

Are there laws to protect these innocent victims? Yes and No. It is not a lack of law, it is a lack of proper enforcement. I might be wrong there, but, this is my American Experience. There are plenty of laws to protect the victims of rape, but you must be a victim first. There are laws to provide limited pallitive care, but you must apply and qualify. Right now, there is a chance to change that in the US. I wonder however, as we extend the amount of people who are free of institution and live at home, are we extending a regulatory process to see to it that these people are not victimized?

I do not know. So, I am going to try and find out. I think a system should be in place, surprise visits, people actually believing it when someone says “She has hurt me.” or “He doesn’t feed me.” We need to change the world. I know people who are trying. I am trying. Is the world listening? Are we seen as more than strange deformed creatures? I hope so.

I am an American. You might not be. You are human. I am human. Spread the word. Humanity isn’t limited to the able bodied white man. Humanity belongs to every homo sapien. So stop acting like we are invisible. I see you. You see me. I am human. She is Human. He is Human. WE ARE HUMAN!

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.

She Wore a White Beret

Sprite adores the French Language. I think it is beautiful but my service cat understands French. I am not sure where she picked this up, but the first two years of her life are just hers and hers alone. Today, at Walmart, we met the most fascinating woman.

When I am old enough to be Elderly I want to be just like her. She has eight cats, speaks five languages, and respected the etiquette of Service Animal interactions, at least until Sprite forced her to pet her via a well placed headbutt. She still asked permission.

Being exhausted, a bit mentally foggy and heading into Walmart usually leads to calamity. Last time I felt this bad and did my shopping I was nearly assaulted for existing, because I get more bull headed in this mode. I am less forgiving, because it takes time to forgive, to ignore the slights, and to not let myself punch annoying people. I still manage, but I am ten times less likely to be patient and calmly explain why they cannot pet my cat, why they cannot touch me, and the fact that I am an intelligent human being.

A cart with a single bag of cat food blocked my path, and I said, “Excuse me.” She turned around, and I saw that this woman had the sweetest face. Her eyes were bright, gleaming with intelligence and years of experience, she held her back straight and smiled. Her smile grew as she saw Sprite. Moving her cart she commented to me, “What a lovely cat.”

I managed as always to not mumble, “I know. She lives with me.” Instead I smiled and said, “Thank you.” Then went to grab a few cans of cat food. She continued, “Is she a service animal?” I paused and said, “Yes.” She turned to another stranger and said, “See, you did hear a cat and i was right.” I felt a bit of guilt then, for I had been less welcoming, though I was trying to just do my shopping and go home. The man huffed, “Cats ain’t ever gonna be service animals.” His jarringly bad grammar made me wince and I said, “According to the law, any animal that can be trained and is not a threat to public safety, while meeting other specific requirements can be a service animal.”

He stalked away, a third stranger laughing, “Wow, Where can I read more.” My frustration was gone. I was shocked, first by the fact that this woman had stopped a stranger from complaining, stating the truth that my animal was likely a service cat, and that they should just leave well enough alone. Then by a request for information. I shared the sheet I have with me at all times explaining the law, and he wrote down a few of the website addresses I have in the first post, about how to Self Advocate.

I had already dealt with a manager who was also accepting of her. Entering the store, I had run into not one but two employees who chose to discriminate. Despite my state of mind and limited ability, everything was going well because I was being treated like a person.

We began to converse then, this beautiful woman and I. She said something I did not understand and Sprite perked, “Oh, forgive me I forgot to speak English.” I apologized for not knowing French, and she laughed. “That is a first. I am used to Americans, especially women, insisting I speak their language. I hear so often how horrible the French are, how we are rude, for expecting people in France to speak French.” I replied, “Well, we expect people to speak English here, and many discriminate on language alone in this country.” She chuckled again, her laugh is so smooth that it was like wrapping my ears in silk. “Very true. You are very open minded, you must not have gone to College.”

This confused me a moment and I blurted out, “Well, I dropped out when I broke my back.” She clucked her tongue, “You should make a better story out of that, you went adventuring and merely have gone to the college of Life.” We traded stories, then, she asked me how I trained my cat. I told her the truth, the same way I used to train my dogs. I rewarded her for good behavior, I punished her for the bad by not petting her and saying no. “She is very rare, her eyes are showing more intelligence than I have ever seen in such a small creature.” She paused then asked, “Do you have provisions for her, should you die?”

Refreshing, to be asked that. Most people run away from the conversation of death. As I wrote about before, I am supposedly going to die before September. I refuse of course, but Death is always looming over me, shadowing me on. “Yes, I have a series of plans, all numbered and written out incase one should fail.” She was relieved, her expressive body revealing that. “Good, so few think beyond their lives. You are rare too.” I shook my head, “No, I merely have lived.” I gave her my phone number, after we discussed a myriad of other things. I wanted to stay in that moment forever, but an alarm went off and I had to go. We will stay in contact.

She was so striking, not out of a physical beauty alone but also because of her genuine and open nature. She showed me an aspect of life I desire, and although my brain is still clouded over and my body demands rest it stood out, sparkling before me. She wore a white beret, a cream sweater, and tan pants. She glowed like a snowflake. Her blue eyes were a bit cloudy with age, but her mind was so sharp and she was open to sharing so much. I suddenly want to go to France.

She also took the time to converse with Sprite, treating her as an equal, and feeling joy as Sprite obviously understood her. They chattered at one another, and Sprite leaned up just before we left placing a kiss on her lips. After we parted ways Sprite made sure I did not feel neglected, though I felt the same warmth and love she seemed to. She rubbed all over me, purring and delighting in our shopping trip.

I even let myself have a treat, I bought a butterfly hair clip. No more lamenting my choice of a hair brush or nothing, I am going to have some panache, and a dose of style when I give my speech tomorrow.

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.

When Advocacy is like an Onion

Advocacy is like an onion. It has many layers, and each layer is not quite the same as the outside layer. Starting from the inside you have a core of people, the advocates for each organization that are well known on a National and International level. Each layer is a ring of less active people, less aware people.

Each layer going out has less moisture and vitality. When you cook an onion you usually peel off a few layers and discard them. This is where Advocacy is not like an onion. You cannot discard the outer layer. The outer layer consists of the people who have no information access. They are the people who advocates need to help the most. They are the most likely to be abused, they are the most likely to suffer, and they are the most likely to desire death out of neglect.

I have been in many layers of our Advocacy onion, and I know those layers very well. I work each day to try and help every layer I can access, and this includes looking for people in need. This sounds paranoid to some when I explain it to them but it is an essential part of advocacy. One example comes from a blog called Chewing the fat. You can read the entire story there, but the author was first abused by a stranger, and then took note that the stranger was a care giver. They then made a choice and reached out. The second part of that story is linked here, I won’t spoil the ending for you, you can read it on their site but know as you do, the victim in the story was the outermost layer of the onion. Now she has found herself on a new level.

The other way that advocacy is like an onion is it can make you cry. I myself am challenged with showing my emotions, even alone crying is a struggle. I have never cried so much in my life as when fighting for the rights of myself and others. Cutting into an onion triggers a chemical reaction, just as at times the tears are triggered by of all things endorphins. Sometimes I cry when advocacy goes so well that the joy in my heart overflows. It can be boundless. Other times my frustration and anger bring me to tears. Any emotion that can be felt can be magnified by the act of Advocacy.

Another way that advocacy is like an Onion is simply this. I hate onions. I really hate having to constantly advocate. I do not just dislike it, I hate the pain. Advocating hurts me, it burns up my stomach at times, it leaves me exposed to the sun, it cuts my soul open and lets even strangers poke at it with their sharp sticks of injustice. I am allergic to onions, they burn my flesh when I touch them, they split my skin, and my eyes like to swell shut after, blinding me.Sometimes people who ignore the truth, wasting my energy and causing pain blind me to the happy moments I can have.

The last way that I will share, but far from the last way that sets out truth, is this. Onions and advocacy can add spice. Isn’t variety the spice of life? My advocacy takes me on a strange and varied journey. I never know what each moment will bring, there is no predictability. This causes me to thrive. Onions add flavour to flavourless dishes, they change things, and they can make a good meal better, barring allergies.

For every layer of the world’s largest onion, there are more analogies. You likely have thought of some of your own while reading this.I cannot ever give up advocacy, for myself mostly, but for every single person that I have helped.

Do you like onions?

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.

Facebook Advocacy

I found out about the Facebook group fighting to force Facebook to enforce their own Terms of Service over at Chewing the Fat. If you read my Blog you know the main theme is advocating in every moment. There is always a choice in what you do. If you face book, please, join in.

Protect the people with cognitive and developmental disabilities such as Downs Syndrome who are being used for the entertainment of the ignorant and bigots. We need to fight for them. The link to the group is http://www.facebook.com/group.php?gid=63516216741 or you can click here for direct access to the page. I would not want to be victimized with my image being used in the manner that these groups are. The main focus of the group is to ban the word Retarded from Facebook.

Let’s make it so!

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