Spiderweb has no Spider

March is Brain Injury Awareness month. I have brain damage in my fine little skull, all from untreated concussions, working through the pain, toughing it out and yet, I am never certain what issues spring from what challenges. Since I have autism and brain damage, as well as visual and hearing ailments, what causes what?

Too, when I sit out in the sun for five minutes and note my pustules later, reacting to the presence of the very thing that makes food grow and light fill our world, I have to guess, is this exact blister from Hidradenitis Supprativa, a side effect of Ehlers-Danlos Syndrome, an actual pimple, sun poiosning as my mother calls it or is it still something else.

Then, with the issues with walking. It could be a side effect of the Ehlers-Danlos Syndrome, the Spinal Cord Injury, or just a minor pelvic dislocation, but is it something else? Did falling through that chair do more damage elsewhere that no one can see?

Multiple disabilities are a huge challenge. When i thought I had a single disability, I had unanswered questions. When I thought I had two, I thought the world was ending. Then with three, it all began to feel alright, but with four I was once more mourning, and with five I became angry. With six, I felt as if i should just die. With seven, I just stopped caring about how many I had, and began to fight to thrive. With eight, I found it status quo, with Nine, Ten, Eleven, I began to count it all over again.

I am a spider’s web, everything is connect, everything has always been here it just has a label. The labels are flies, sticking in my webiness, wiggling and shaking things up. So far, the labels have done very little to better my life. Usually they complicate it. If I tell a doctor about more than one disability, they usually give up on me. What right does that give them to deny me a quality of life?

I want to see, I want to hear, I want to live in a world without fear, I want to dance, I want to be just me, yet me is not without disability. I no longer believe in a cure for any of my ailments, except the spinal cord injury. I do not want them. I fear the changes to personality that treatment could’ve brought. Sure, I might not have had it as hard as I have. I might have had more than just a single man to teach me how to be a person. I might have had friends.

Or I might have been worse off. I get tired of able bodied people, those in denial of disability, or those who think we are all cookie cutter identical creatures telling me what works for their disabilities.

I have tried experimental treatments, mostly for my PTSD and they made it worse every time. EMDR, I have no idea what the letters mean but I remember the treatment. It worked for every other patient, so I was just a failure for not becoming magically better. Penicillin allergy even has an example, a doctor wanting to see just how allergic I was, because of course it costs more money to have another medication and money has more value than the patient.

When I was younger, long before my autism diagnosis I had an Occupational Therapist funded by the school. She did teach some neat things, we worked on my fine motor skills, which still suffer, and made earrings. We did all types of activities, molding things in clay, dancing. This was what I did for recess, another bit of isolation granted by my abnormalities. I was lonely, until this program came forth however. There I met the other kids who were a little like me. This woman decided to have my mother take a rubber brush to rub all over me, to try and desensitize me to the world. She did not ask me, she just called my mother in and during school one day she grabbed my arm, while talking to my mother and began to scrub my flesh.

This worked on the other children, so it had to work on me. I started screaming. It felt as if she was pealing off my skin, I screamed, and screamed. She told me to shut up, it would all get better. My mother took the brush out of her hands and asked why she would do that, when I was sobbing. I don’t know the end result of the conversation, but we took that brush home. It was just like the ones sold to wash dishes with, and that is what my mother did with it. I think she chose to lie to this therapist. I do not remember because I went into my head, flashing back to times when my father did try and peal away my flesh.

The sensory overload pains me to ever remember, it wasn’t just a sensory overload it was a flash back and a denial of my right to unique treatment. I never accepted the treatment of this OT again, I went, but I became surly because she wanted me to be like the others. She wanted to scrub me, until I just didn’t care. It did not matter to her that it hurt. I still have nightmares from her scrubbing.

I wish I could say it never happened again, but, she would scrub me herself, at times using this as a punishment. Too often the medical community does this, forgetting that each body has a unique chemistry, each brain a unique perspective. Now I fire doctors who do not listen, they get one shot and that is it with me. I have to be harsh like that to survive.

My cat William, the one with brain damage, has a similar problem. Touching his paws hurts him. He has dangerously sharp claws, cutting me when he doesn’t mean to, but to trim them means to cause him that same sort of pain. I figured this out after I had used our PetoFiler nail trimmer on him, it vibrates, rotates and basically sands down the nails. Sprite loves it. William was in pain for days and I barely tipped the claws off.

Each method for a traditional manicure fails him, I have yet to find out how to protect us both, but knowing what it is like to be tortured by someone thinking they know what is best, I back off. I would rather have cuts than send him into a world of pain. If you are a doctor, reading this, try and remember your patient might feel pain differently than you do. Sometimes I have to go naked because the pain from cloth rubbing against my flesh is as potent as that scrubbing brush.

It was yellow, it was multi-textured, and it is one of my worst nightmares. Those moments are on par with time spent in the care of a diagnosed psychopath. Do not traumatize your patients by thinking you know it all, or that every treatment should work for them. Humanity is full of individual people, not a bunch of identical organisms.

Violence (Trigger Warning)

I keep rewriting this post. Violence is bad. We all know this. Violence is often celebrated in our culture. In the US most of the television shows, even for children, include some sort of violence or attempt to teach children what boys do and what girls do. Girls like fashion, pink, and hair. Boys like to fight, are great leaders, and work. Bull pucky. The media also rarely illustrates that women can be violent.

I am capable of killing. I am not capable of murder. I know that if I had to kill someone to defend myself or the ones I love, I could. I discovered this when I was young. I am very loyal, it is a part of my nature to protect people. This does come from my history with violent abuse. If I could take the pain then I could save my sister or brother. They used to do that as well. Each one of us did our best to be the only one in pain. I am capable of killing, but, I never have.

I have had run ins with so many things, my life sometimes reads like a fiction novel. I never used to think about writing nonfiction, so afraid of being told I had dreamed it all. My biological mother and I talked on the phone today, partially about violence. The violence of doctors.

When I was eight I began to see a psychologist. After the first meeting they handed my mother a prescription for Zoloft. The pills made me sleepy. I hated taking them, because I couldn’t think. My father was still around, and taking the pills at his house always meant more pain. My reflexes were already slow, how could I fight back? I mentioned this to my doctor and the threat came. “If you do not take your pills you will be locked up with the other worthless children.” This doctor was a man, I remember falling silent, wishing to tell my mother. He threatened too that if I told her that she would be sent away, abandoning the others. I took the pills.

This man is no longer a doctor, he tried this on a competent adult a few years ago. There was a scandal, it made the papers. This was just after I fired him. He was the first doctor I fired. I spent years after that taking more and more pills. At one time I was on six antidepressants, an anti psychotic, an anti epileptic medication that they thought would make me not depressed, birth control pills to try and force my body to have a period, and a few other things.

When I threw up, I had to take a second dose. Doctor’s orders. There are chunks of my life lost not just to suppressed memories but to my brain shutting down from the constant overdose. Most of the medications I was on were not approved for children, just adults over the age of eighteen. I reacted to most of them. Being allergic to so much, that is no surprise. Throwing up, bleeding with each dose, and hallucinations weren’t big enough side effects to be taken off of the drugs.

I was more violent during that time, as they tried to fix a chemical imbalance that did not exist, due to the drugs. They are not the only reason I lashed out at the world. Abuse does that, it teaches people to strike before they get hurt. I barely remember assaulting my best friend in High School. She touched my sandwich and teased me for it. I remember the anger and seeing her on the floor but not the act of hitting her in the head with a chunk of wood.

This was caught on film, there were witnesses. I went into a psychotic rage over food. I have some serious food issues, and I thought she was going to take my food. The fear of being deprived was so strong, that I had to protect myself. This was what I knew, I never knew people could share. I was a beast, primal in my reactions. She did not suffer permanent damage but was hospitalized for it. This lead to the only psychiatric hospitalization that benefited me. Hospital hiding the institution, feeding on itself and drugging children. Teaching them first hand who Nurse Ratchet was.

The reason being I finally needed help. I was shunted around the state, with my history and diagnoses no one wanted to treat me. It feels familiar at times with doctors, sending needles into my heart. I was misdiagnosed with mental health conditions. One to explain every disability. I was accused of things, such as self mutilation that came from my disabilities. I was lazy, I was stupid, I was just not good enough. Years of that, a decade in fact, of being told how worthless I was by doctors and I did not trust them.

I was sent to an experimental facility. The Ranch, as my family calls it, was a peer support program. We did see therapists, and we did have medication given to us but we lived in a boarding school environment. The program depended on it’s recipients to function. This made a difference, as I found people my age I could talk to. This was a first. I also learned I was not alone. At the other facilities you were shoved in until you behaved for three days or so, then went home. In and out like a yo yo.

Each of the children at the Ranch had been in and out as well. Most were not from New Mexico, but a few of us were granted access to keep diversity up. There was violence there, though there was also nature. The Ranch is the only place I have ever been able to drink the water. The water came straight out of the ground. The first thing the doctors did was take me off all of my meds. They gave me two months before they started me on another. They came so close to freeing me from my shackles of medication. The medicine they put me on did change things, it seemed to reverse some of the damage to my brain from the drugs that came before. I stopped losing my hair, I gained some weight and lost some girth. I even began to smile sometimes.

I also met horses. I was one with nature there. There was silence at times, and there was bonding. That was where I learned I could love. The fact is, my father was a diagnosed psychopath. Even knowing this these “great” doctors did not seem to consider that my behavior was environmental. The ranch is where I learned about PTSD. It is also where I learned that flashbacks were not just my burden.

One of the other dorms, full of boys, found a dog. I was triggered when the dog came to us bleeding. The flashback lasted for six hours. I relieved my father killing people’s pets because I liked them. I still cannot go into detail on those horrors without triggering myself. This poor dog was hungry, lost in the middle of no where, and then was assaulted. When he came to our dorm, my brain left. I woke up, and found that the world had for once stopped for me.

This was my turning point. It wasn’t being threatened with institutionalization in the adult hospital, it wasn’t the new drug. It was coming back to myself and finding that every girl had stopped what they were doing, had sat in a circle around me and the dog to which I was clinging and waited. When I stopped screaming, apparently I had been, my roommate asked what happened. When I told them, no one told me I lied, no one told me it was my fault. The first time in my life, someone hugged me and cried with me. No one punished me for needing help, a first in my life.

I was on the cusp of adulthood when this finally happened. I was about to reach a point of no return, trapped in the system. They saved me from my violence, and I saved them in turn. I love each of those girls still. Someday I may cross their paths again, though I do not plan to admit it to them if I do. We each deserve the right to deny our childhoods to an extent.

I spent my childhood dying daily. I am certain that not every therapist was bad, I do not remember them if they were not. I only remember the incidents of threat, of lies, and of burden. Child psychologists often can get away with crimes and breaking the rules of conduct that their profession has. Not all of them do, but, an adult has power over a child. A psychologist is alone for at least an hour with a child, and some of them abuse this power. I had one who found out I would turn on her like a dog hit one too many times. She spent the sessions telling me about her husband’s erectile dysfunction, and telling me I was fat. The male doctor who gave me the pills threatened me each time with different torments. One of the other psychologists took part in encouraging the children at my school to burn me at the stake.

It is no wonder that I hated the world. Until the ranch only a few teachers had ever shown me adults could manage to not hurt me. Each of them saved a part of my soul, saved a fragment of hope from the violence. My mother did try, but, it seemed hopeless that any of her children would turn out to be a healthy adult. How could we? She wasn’t. We only knew violence.

Perhaps the violence I know tempered me? I doubt it. I believe it was the small bits of love I could find. I do not believe the Ranch did all the work in saving me, I think instead they unburied the ground work set by another.

After Toastmasters I will write of my first Sensei, I will tell you of my time as Little Lotus and how the Batman was my father until I was six. It sounds silly, and the fantasy was. It still held violence but my Sensei taught me ways to thrive, not just survive. I will also write about my experience with hate and nearly being burned as a witch.

We, the subjects of oppression are forbidden anger, we are forbidden violence. Even when it is used against us, violence is often attributed to us. Those with mental health issues, mental disabilities, and physical disabilities are vulnerable to violence in unique ways. When defending ourselves we are demonized. Women who show anger are told to simmer down, they are told that their anger is inappropriate. Some are raped to control their power, to try and punish them for anger. Persons of Color of any gender are also forbidden anger. The stereotypes tell how violent they are, and yet when a man is shot down for his skin color and people get angry, the murdering cops get away with it because the people get angry.

Violence is all around us, it is on the TV, it is in books, it is in my beloved comic books. Violence is in our history. It is sadly in our future. I mourn for all the children and those who once were children who know violence. The kiss of violence is the scar of fear, the spectre of disillusionment, and the taste of bitterness that shatters dreams.

Violence is the most horrifying entity that has ever been introduced into society. Violence is not a part of human nature, it was taught. We learned it from somewhere. Violence is not never ending. The cycle can be broken. I have broken the cycle in my family. Even when attacked I try to protect myself without violence. How do you survive violence? How do you endure?

Anger is violent. Violence is a poison. My antidote for violence is to sing, to write, or to create something. To be violent is to become what you fear. Fear can turn to anger, anger turns into violence. The cycle swirls around. I created this post not just to educate, but to share. I want to share my peace. In order to do that, you must see my pain too. I fear these words most of all, therefore I offer them up to transform and fly into the universe like butterflies, unlocking the caged minds of others. I write these words not with anger, but with sorrow for who I was, mourning for the death of innocence as I knew it, and with love. The love is not just for myself, though I truly love myself. It is Wishing Love, I wish love upon each and every person in this world.

I wish love upon you, for whoever you are you do deserve love. I may know you, I may not. I embrace you with my soul. I offer you a haven of knowledge, a haven of peace, and a haven of change. I am a butterfly. Here you too may learn to fly.

The Antidote for Discrimination Is…

I have felt the urge to blog repeatedly, but until now I have not given in. Blogging can be as personal as writing. I have spent the last week in preparation mode skimming the internet reading other blogs, seeing what I liked, what I didn’t like, and the power behind the words. Some of these bloggers brought me to tears, and that is no small feat. Others made me laugh, some caused me to feel sorrow, and a few gave me the chance to feel angry.

I wasn’t sure how to start my first post, but, since I am an advocate for all disabled, all women, all men, all people in need I will start there. The topic nearest and dearest to my heart is Service Animal Law. Some of you who read this might think you know about service animals, and you might be right. Others will presume that a service animal is only for a blind person. You are not correct. A service animal, by the federal definition, is any animal trained to assist a disabled person with a task. This does mean that if you have a seizure alert dog, it has to do more than that. The law even gives behavioral guidelines.

I have a service cat. She is trained to do things including retrieval, seeking assistance from specific humans in the case of an emergency, medication reminders, object retrieval, and she has also been trained to help me balance. A lot of these tactics came out of her instinctual responses, but those needed to be honed. She also had to be trained to handle a crowded mall. Now she handles it better than I do. People often ask me why a cat, and my response is simple. I am not allergic to cats, most of the time but I am allergic to dogs. I also trust cats, and I haven’t trusted many dogs in my life. I have to trust my service animal partner.

I have faced some serious discrimination because of being disabled. When I was still walking most of the time, it was harder because I was in extra agony since forcing myself to walk through a store took all of my energy. The more tired I am, the more pain I feel. There have been times when I have had shopping carts jerked out of my hands, causing me to either fall or nearly fall. I have been denied the right to buy groceries, and recently I have been illegally denied medical care.

I am perusing legal action but I am well aware that other people might not know how. Today, one of the blogs I read, reminded me that not every person is trained in how to handle discrimination. When you are disabled, you might feel more vulnerable to attack, and when people threaten to take away your service animal or refuse access, it can be terrifying. I feel often as if I am going to be hit if I push forward. I was an abuse victim for most of my life, but, adulthood came and I found a way to break free. Not everyone is that lucky.

So, here it is, my guide for other disabled people with any LEGAL service animal on how to advocate their rights. A side not before I begin, if you do not need a service animal, do not lie. We will catch you eventually, and the crime has a punishment. Depriving people of their rights through your shallow behavior is the worst thing you could possibly do, and, whether you believe in Karma, Hell, or just recriminations in this life from other people, you will pay for it. The law will get you, Advocates will get you, and if Karma gets you, it will be worse than anything I could dream up.

The Guide– Dedicated to Renne, Helen, Aimi and Snow, but especially Bree. (All Links will open in a new window/tab.)

Step 1. Stay Calm. This is for me the hardest part of advocating for your rights. Sometimes I want to run, other times I want to scream and cuss. Neither tactic is helpful. As hard as it is, you have to be the bigger person, and stay nice. You can have anger in your voice, do not deny the emotion but do not let the emotions over ride your goal.

Step 2. Calmly as you can, state that they are breaking the Federal Law. This is what I have practiced saying in the Mirror daily for the last two years. “You are violating the Federal Law. The Americans With Disabilities act provides protection for my use of my service animal.” When I say this I hand them a copy of the law. You can get a copy of the service animal laws from the ADA.  I  have the business brief printed with my state law on the reverse side. You can obtain access to your local service animal laws at http://www.animallaw.info/ I carry  my print out in aUSB case on my scooter keys. You can also buy laminated cards from various businesses with the law on it that explain your rights. For some people this is easier. Those cards are usually kept on your animal’s harness.

Step 3. Explain the law in simple terms and how they are violating it. This does mean you need to know the law. Not only does knowing the law protect you from discrimination, but, it lets you educate people. The biggest cause of discrimination in my experience is a lack of knowledge. If someone isn’t willing to learn, or admits they know, then you have a larger problem. One of the main causes of confusion with service animal awareness is that few businesses train their employees. It is illegal to require a service animal to wear a vest or show an ID tag. When someone asks me for this for my cat, I show them the law and educate them. Often, they will try and state she cannot enter because she is not a dog. My local laws state only dogs can be service animals. The laws are written so that the stronger law prevails. This means that if the Federal law says I can have any animal, that is trainable and meets the standards and the local law does not, we refer to the federal law. However if you live in a state like California that requires ID tags for all service animals, then, the law requires you have an ID tag. This is another source of confusion, but, it is an attempt at increasing the rights of many.

Usually by this point I am either in the building or they are just going to break the law anyway. If you have reached this point, it is time for Step 4.

Step 4. Take a very deep breath, and remember Step 1. Then ask to speak to their supervisor. If they refuse or are the supervisor you can try explaining the laws again, or calling another advocate to try and help. I keep the number handy to the local advocacy organization, and they have helped me countless times. Even knowing I can call day or night, is helpful because I do not feel alone. At this time I have no national links, but if you are in New Mexico, contact Service Animals and the Law. (Link forthcoming). If you have links nationally to websites that can help, post them in a comment. I want this page to be a resource for any person in need.

At this point you should be through the trying time, most managerial staff listen well and correct their employees. Recently I had to fight my way into an apartment complex using this tactic for three months. Even when I had food poisoning I had to try and follow my rules, but, eventually I prevailed. Advocating for yourself is the hardest part of having a service animal.

Not every person responds to this and if you still cannot get through to them, you need to contact the ADA. You can email them a detailed complaint, include names, addresses, contact information for both parties, and send it to ada.complaint@usdoj.gov . If you would rather call you can contact the ADA via their hotline using these numbers: 800-514-0301 (TTY-800-0363).

Remember, you are strong, you are beautiful inside and out, and you are not alone.

Other posts in this series: What is a Service Animal?

Additional Resources will be added as I find them:

Information:
http://www.assistancedogsinternational.org/
http://www.deltasociety.org
http://www.ada.gov/svcanimb.htm
http://www.ada.gov/qasrvc.htm
http://www.equipforequality.org/resourcecenter/ada_serviceanimals.pdf

http://www.animallaw.info/
Service Dog Vests and Supplies:
http://www.pettop.com/
http://www.raspberryfield.com/
http://www.activedogs.com/servicetherapyvestharness.html?gclid=CI-6iKm7rpgCFQEpGgod3QL9Ug
http://www.ldsleather.com/patches.html
http://www.petjoyonline.com/ADA_Federal_Law_Information_Card_for_Service_Dog_p/svd-0054.htm The Law Info Cards
Scholarships
http://www.assistancedogunitedcampaign.org/scholarship.html
http://www.keystonehumanservices.org/ssd/ssd.php
Blogs:
http://www.servicedogblog.com/

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