I am Angry

I became aware of my anger today. I wasn’t aware how angry I was until trying to explain my back injury. I often tell myself I am not angry and try to behave with altruism in mind. I am pissed. Right now I could cuss! I have felt tension in my neck lately but, there are so many reasons to be tense I couldn’t figure out the why.

I am angry that people take disability as a sign of dramatics. I am not overly dramatic when I do not want to go grocery shopping. I do not want to face people. I do not want to treat something else that is medically wrong with me the doctors way, and choose to abide myself. This doesn’t make me overly dramatic. I have reasons for each thing, and none of them are dramatic.

None of my disabilities are in my head. As a young disabled woman, I am often told to get up and walk. My wheelchair is used as an excuse to shame me. It fails, but, I am angry. I am tired of explaining why I am in a wheelchair. Why is it not acceptable to ask someone, “Why aren’t you in a wheelchair?” Why is it that being seen as abnormal means people perceive weakness?

I am not weak. There is no weakness left with in me today. I might be weak tomorrow but right now I am feeling the roots of the earth. I am feeling ancient and mighty. There is a cost at this anger, but being aware of it means I can try and let it go.

I am specifically angry at the word Vanity today. Why is it vain to want to prepare for the risk of my hair not coming back with scar tissue? Any other person I know of seeking out ideas, pricing wigs, and other ways to hide scars would be assisted. When I ask the question the shop keepers look at me, look at the chair and ask why I bother. This is not right.

I want every bit of perceivable normalcy that I can obtain. I do not want people to see a big scar on my head, then my face. I want them to see my face. It is hard enough knowing that they first see my wheelchair, then my service animal, then my breasts, then my face. It takes so much more for a person with a disability to be seen as a person at all.

Why does it take extra brilliance to be an equal? Why does it take harder work to make ends meet? I am angry about this. My rage burns slow and deep. I am trying to change things but my fear is that I will fail. I am starting a professional public speaking business, and I am hearing the voice in my head whispering, “You will fail.”

I might. I don’t think I will. I know I will face discrimination, I will have to enforce the ADA wherever I go. I fear though, that I will be paid less because of the chair. I fear that people will not want to hear me speak because what good can a chubby chick in a wheelchair do for them? I have to push these aside and feel my anger, so that I can push on.

I am angry too as I realize that bullying doesn’t end with childhood. I am disappointed as that delusion fades upon the minor scruitiny. I will write about that soon. Adult bullies are just as bad as the children they raise. They are the ones who teach children cruelty. I run into them often.

I am proud to say that my lack of weakness shows more often than anything else. I am a very strong and talented woman but, what about those who have not had the chance to flourish? Yes, I fought tooth and nail for every bit of normal I can project, for every success. Not everyone is strong enough and most children with disabilities need more care than I recieved. How much stronger would I be if I had been cared for? I think I would be a million times stronger.

I am a butterfly with broken wings that has flown again. I just want to fly without it hurting. I want a moment of peace. I want to have one day where I do not have to prepare myself for the onslaught of the world’s prejudice. One day of peace. There is no such day. It might happen for some but as a person who cannot hide their disability, as a person who has a disability at all, as a woman, as a bisexual person, as an autistic, as a person of any minority knows… that day of peace is one that you fight for and taking it can cost you everything.

I am so angry, but I will not let my anger interrupt my path. I will not let it mask my fear. I will instead use it as passion to continue fighting discrimination. I will continue fighting for my freedom. I will continue fighting for your freedom. Everyday more people become disabled. Everyday more people find their rights are a myth. Everyday people die as a result of discrimination. Everyday in the United States, where I live, people die of starvation, people become homeless.

I am so angry. The anger comes from an emotional pain that leaves my heart throbbing and me in tears. This pain is for those who suffer. Part of it is physical pain too. My back aches, my muscles spasm, my ears ring so loudly I can barely hear anything over the din, my fingers hurt and dislocate, and I grow angrier because I don’t know why I feel like this. I shouldn’t lose a day to snow. I shouldn’t fear going outside, because each time I do my saftey is threatened by ignorant fools.

The cost of living with a disability is so high. I am tired of paying it. I am tired of feeling the terror of actually working. It makes me angry to feel fear like this. What if I do not earn enough to pay for my medication? What if I lose my SSI and become homeless? Will my Person and Caregiver both lose their incomes if I work? It effects them too.

I am tired of being angry. I am tired of worrying about appearance, yearning for enough money, proper clothing, and the ability to do what I want when I want not when someone else’s whim allows. I am far from alone in this anger too. Most people feel a form of it.

I thirst for the waters of freedom. I gasp for the air of life. I reach for it, but it is just out of reach. I feel the wind beneath my grasp and know it brings another storm I must weather. This is living. This is a life I did not dream of or foresee. I was unprepared yesterday. I was unprepared today. Tomorrow I will be prepared.

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 anotherĀ  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.

Post Traumatic Stress Disorder and Advocacy (Trigger Warning)

In conversation with one of my young friends I had a revelation. This was about thirty seconds ago. Sometimes advocating triggers flashbacks while I am trying to function. My mind lept then to other people who have to self advocate through PTSD symptoms. It isn’t always a flash back. If you do not have PTSD it might be harder for you to understand being jerked around by past trauma. Therefore I am going to explain, and this is why there is a trigger warning on this post. Sometimes reading about PTSD or other issue related things can trigger people.

This is not from the DSM (Diagnostic Manual thingy) but is from my experience. I may leave things out that apply to you or tell you things that don’t. The problem with labels is they are often not enough to truly explain what something means. Lets say someone shoots a gun. My first impulse is to be very still, not breathing, and praying that my father won’t make the shot. Even typing that sentence my head went into the land of fuzz and my chest is tight. I am taking slow breaths to focus and clear my mind. The trigger is not always a gun but just a loud pop. My brain is stuck on certain points of the abuse I suffered, it has a programmed loop that it likes to play. I have warning symptoms for my flashbacks now, and can often circumvent them.

My reality is in jeopardy from these loops. the weakest symptom is a tingle, intense fear, sometimes I start randomly bleeding. Why do I bleed? One theory a psychologist offered is somatic symptomalogy. Basically my body remembers, and it reacts so strongly to what my brain signals, that it thinks it is injured. This adds to the pain I feel. The pain from invisible injuries is far from phantom. I feel it. The next step after that is the sensation that I am floating, I disassociate and can see the entire world, but I am not connected to it. Usually I then go back in time. I see and feel at the same time, from multiple vantage points my father with his brand new gun, me and my siblings on the couch. I feel the cold metal of the gun pressing against my forehead. My nose stings with the tears I cannot shed.

The loud bang comes, I feel the heat of the bullet, my skin is burned by muzzle flash and I feel a horrible pain as the bullet grazes my temple. I don’t move. I don’t scream. I just stare up into that black hole, smoke pouring out of it and avoid looking into my father’s eyes, knowing he is going to be angry that he missed. I hear every word he screams again, how worthless I am, how I should be dead and must have moved. My sister starts to scream, my brother too but I can’t move. I look into his eyes and I see the blackness.

I still do not remember what happens next, though I have been told he decided to shoot at my sister, but I pushed her aside. I just know he tried to shoot his children, sitting on a couch that smelled like pee, and nearly killed his neighbor because the bullet went off. The cops were called but I took the blame. I said I was playing with his gun when it went off. I lied, to survive.

When I come back to myself I always want to vomit. Instead I focus on breathing. If the nausea is really bad I will take some Rolaids. Sometimes now, after years of effort, I let myself cry. Usually I manage a tear but my brain has yet to grasp the concept of tears. If I am not at home, it is worse to recover. At home I control my environment, I have a bed to curl up in, two soft fluffy cats, and my Person can go elsewhere more easily giving me the time I need to recover.

When I am advocating and flash back, I never know what to do. I try different things, and usually they work but the vulnerability can be debilitating. I flashed back my first time having to seriously advocate to that scene. That is why I chose to relate it to try and explain what PTSD is like. I wish I had simpler words but none can encapsulate just how much there is to it. Sometimes the flashes are different, sometimes I am still an adult but I am trapped, it is worse in some ways because I still feel the pain but I am completely aware that my world has vanished. I am never certain if I am going to hurt someone. I have before, but it has been a long time.

That first taste of advocacy was so bitter. The cops came, and one fondled his gun and my brain shut down. I was afraid, in pain and exhausted. I was being yelled at and deprived of my prescription because I needed my service animal. The cops even saw Sprite follow her training. When I flash she has three tasks, beyond her instinct to comfort me. First, she signals to my Person for help. Sometimes a conversation can end it. So she chirruped at the person of the day, and I had to form the words, “I need you to deal with them for me. I can’t.” Then, she helps me to sit. I had to wait fifteen minutes for a chair, I wanted to scream at them but I tried to stay calm. I was hyperventilating, they took this as my being dramatic. Then, she moves to my shoulder. Her instinct is to sit on my chest, but she might get flung there, I do not handle pressure on my chest well even when not panicking or flashing. Her instincts tell her to purr, to rub with just her face against mine. This grounds me.

The police threatened to arrest me if I did not leave the facility. I knew enough to know they couldn’t but they refused to acknowledge that I had rights. I couldn’t fight, but I had to. I chose then to repeat the law over and over. I couldn’t think, I couldn’t see their real faces for half the time. All I saw was my father and his eyes that reflected no light.

What can you do if you have PTSD and are an advocate? Here is the how to portion.

Step 1. Before you get to the point of advocating, have a support structure. This is a difficult process, because not every person can truly understand what it is to lose your reality. You need to have someone you trust availible, at least to call.

Step 2. If you have medications used to treat the symptoms of your PTSD in an emergency make sure to carry them with you, to keep a back up dose with your support person, and to keep your doctors number handy.

Step 3. Create a kit of items that help forestall your flashbacks. Nothing works for me beyond my cat. I can give her the signal she is trained for when i feel the warnings coming and ground. This is all I have right now, beyond my Person. No meds, just those two.

Step 4. Remember to breathe. Sometimes if you focus on just breathing you can help yourself.

Step 5. If you flash back during advocacy, try and focus on the responses that do not match the memory. This has worked for others, pulling them out.

Step 6. Advocate anyway. I did get the illegal policy over turned at the Pharmacy where I was threatened with arrest. I had to fight for a long time to do it, but, they relented. It is worth it even though it you might feel endangered or might BE endangered by your flashbacks.

Step 7. If you have to, stop. This opposes Step 6. Not every incident can be worked through. You might need to call your therapist, you might need to let your support person advocate for you. This is not a failing, this is merely the team network that advocacy should be.

I am glad to write this how to. I never considered how important it could be, but, in my mind my broken back, my asthma, and my failing eyes are not my most dangerous disability. The worst disability I have is PTSD. At times during flashbacks I have hurt myself, my friends, and reliving the painful memories can also cost me emotional, physical, or mental progress.

Keep in mind the time you are most fragile is just after a flash back. Some people can be triggered more easily, often it is easier to react in rage. Do not minimize your pain either. It is okay to cry, scream, and sometimes to just walk away.

I have done all of the above. Not every incident with advocating will cause a flashback either. Most of my time advocating I am left with memories of victory. My first taste of advocacy is as sweet as it is bitter, because I still succeeded, despite my unabiding terror of these men. My greatest cause was also revealed to me. I am actively fighting to get the local police trained in how to deal with enforcing the ADA. I want my rights protected, I do not want to fear being put in jail, dumped out of my wheelchair and my service animal being put into Animal Control’s care.

That was the threat, and so often is. My heart goes out to any other advocates who suffer from PTSD. I know each person’s PTSD is varied, some may not flash back, some might just panic. Others might not be able to stop their flashes. You can still advocate. Just prepare yourself as best you can.

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