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!
Textual Fury 