Victory!

Today there was a great Victory. Not just for me but for others with animals that are their helpmates. Service animals have always been controversial with in the doctor’s office. I have had to change doctors a few times given the responses, some places just refuse to accommodate your needs and when asked they would rather be reported for an ADA violation than bothering with reasonable accommodation. Today after my appointment I was told I couldn’t bring my service cat back in. I asked to speak to the person who made the decision and pulled out my well worn copy of the law. I realized this copy is the one I used last time a doctor’s office discriminated immediately, there was highlighting on the portions about medical offices.

I asked the why, and I was told something new. This office does allergy shots and the risk of exposure for other patients is a concern. I asked if we could compromise which startled the office manager. It actually made her freeze her eyes wide with shock. Compromise? She asked what I would suggest so using the ADA as an outline I pointed out that I sometimes cannot even get out the door without her, but I do not want others sick. Sprite will wear her most covering outfit when we go in and I will call in advance so I can go straight into the office where I will see my doctor. This was our compromise. This allows me to have my needs met but does not infringe on the rights of others.

I expected a huge battle, but instead I was given victory. I left a copy of the law with the office, and explained what each part meant to the office manager as well. She hadn’t really ever bothered learning the ADA laws and therefore was unaware she had been about to violate my rights. I did remind her ignorance is never a viable reason in the court room, but is instead the fool’s gambit. I said it as nicely as I could of course. Victory, glorious victory. I feel more secure going to the office now, I feel respected, I feel human, and I feel alive.

In other news, I started with my newest caregiver today. The previous person was so great but that partnership is at an end. She has moved on to another client who speaks her language fluently, so her needs are being met. The new caregiver and William are already attached, and she is going to see if she can take him home. William may have a home. She understands his needs, and is willing to make the commitment. All feels right in the world, though it is a bit rainy today. Oh well, it couldn’t be a perfect day… that might be asking just a bit too much!

Oh, and if you want some great audio entertainment… check out Pendant Audio. They do radio shows! I know that not everyone is into this sort of thing… yet their work is really high quality. I am currently catching up on my Earth-P radio listening. The shows are short and make great waiting room time killers for those days when you just can’t read.

Denial of Disability

This post is actually a response to a very personal email, which I will not post here as I cannot contact the writer to ask permission. The information I wanted to reply with has universal assistance behind it as well as some that is a bit more personal. Therefore, this belongs in the How To Section.

As far as the writer goes, you sent the email via my contact page at the tale end of April First, 2009. I hope you contact me again, but your email is bouncing.

Here is my reply, modified to cut out personal details that I have no business sharing:

I was on disability as a minor, and was immediately denied as an adult. I am back on SSI right now, though I am trying to get a steady income so that I can live beyond my current means. I am a technophile and not being able to buy a new computer every month actually bothers me more than it should. I also face the fear of not having the insurance, as without it how will I afford medical care and medication?

So, with my own experiences in mind, including the reapplication for government assistance, I have some questions for you, and hopefully these lead to a positive change in your circumstance. First, how many times have you applied? Have you filed a formal appeal? If you do not know how, I can try and help you though you might need to hire a lawyer.

If you have appealed before, try applying with more details. Certified or notarized letters from multiple doctors with firm medical fact and the stated opinion that the damage to your body prevents you from safely working at any job will help. Most doctors are willing to do this.

The other concern I have is about your lack of Durable Medical Equipment. There are usually local organizations that will help you obtain medical equipment. There are even exchange programs where people donate their older equipment to help those who have a need and no insurance. As you are an adult, if you are not considered a dependent or won’t be with your own income you can also often qualify for a loan that has either zero interest or low interest and very small payments for medically necessary devices. Some providers (In this case those who sell the medical durable items) will also offer a loaner program for those who qualify.

If I can help you further please let me know. This is what I do when I am not blogging, and as long as you are comfortable with my assistance I will offer it.

This offer goes for any of you. If you need help with ideas on how to adapt, finding resources, or even need someone to write a letter explaining disability I will do it. If it is in my power, I will help you. I cut out a lot of my above response, yet I believe the pertinent details remain. I do not want any of my readers who contact me to feel uncomfortable. The point of this entire post is to reach out to someone who has a need. Even if you are not the person who contacted me and this helps you, then it is good. If you have ideas for posts to help others and want to, you can also contact me and we can discuss sharing my space.

I am going to mimic Renee from WomanistMusings’ open blog system, with one caveat. I will uphold my curseword free blog, and have the right to deny an article, if it is full of hate speech or is going to do more harm than good.

Beauty

I am tired of the stereotype of beauty. I grew up being told that a girl should like men who look like Brad Pitt. I like women with soft lush curves, big and strong ones too. Many would consider my past conquests masculine, or overly thin, or fat. No one type fits what I like. I too have “strange” preferences for the men I have dated and these too tend towards those with meat on their bones, they have body hair, they are dark skinned, fair skinned, or really just alive.

Most of them, but not all, are tall. With either sex I tend to reach out for the taller people, though tall has changed in meaning since the wheelchair entered my life. I can’t look up at my baby brother without hurting my neck. He sits down for me, and still towers above. He is about seven feet tall. I love height because my family is full of tall people, except my own biological father. I associate height with safety. What does this mean about the other standards of beauty? Are we all programmed to like certain things?

Yes!

A huge part of my persecution in this life has been based on facets of my physical appearance. I have red hair, very pale skin that burns the instant sun touches it, soft full lips, and I have always had curves. My smallest size is a fourteen. I was barely eating to maintain that. My body needs meat on it. I am simply a curvaceous woman. I do have an ample bosom as well, and all of these things have been picked at.

I grew up being told I should be blonde. Blonde meant perfection. I hardly find blondes attractive as a result. I am aware that most of my siblings and my own mother are all blonde, and this factors in too. I think Blue Eyes are the best, though any shade is lovely to me. Blue eyes were mocked, because they are pale. Being a minority as a white person is very rare in any part of the world, the patriarchal structure still dominates and is usually white, even in countries where white is the minority. I have always been told my pale skin makes me wealthy. Whiteness in my state is a status symbol.

In India women who are by nature in the darker end of the spectrum are considered harder to marry off, they have less value based on something as simple as their genetic make up. The lighter you are, the more respect you can gain. This is White Privilege. It has defaced an entire culture, this love of all things white has poisoned us. You see whiteness in media, dominantly with able bodied super muscular WHITE men. You see their blonde perfection everywhere. I think back to the Nazi Propaganda studies group I was a member of in High School, and that is what I see. Reflections of past propaganda, continued, accepted, and fully realized.

Curly hair is considered disheveled. Girls with curly hair wake up at odd hours to iron their hair out. I think it is lovely, and my standard of beauty includes the use of a curling iron to add curls to my hair. This is rare, the era of the Super Perm died out at the end of the Eighties, except for a few hold outs.

I am told I must wear make up to seem presentable. I do, at times like to wear make up but I do it when it feels good. Usually I will also hide some of my facial scars under make up, if I cannot shake my feelings of Paranoia. I do not allow myself to wear make up on days when my self worth is being questioned, or when my confidence would hinge only on sultry red lips.

As I write this I am watching a movie that has what I consider the equivalent of Black Face. Sophia Loren is the Millionairess, Peter Sellers is the Indian Doctor who teaches her how to be more than a spoiled snob. This movie is full of propaganda that is anti woman, anti persons of color. I was enjoying it until I realized the fallacy that a white man is playing an Indian, with hardly any alteration of skin color and a very cliched accent.

I also note that the famed figure of Sophia Lauren seems to be aided via a corset. I might be wrong, but the extremes to her figure seem to need assistance. It doesn’t feel natural to me, though it does fit the “standard of beauty”. Her hair is lightened a bit, and of course she is always shown in posh and polished appeal during this film.

I do not think Brad Pitt is handsome. I think he is mediocre. This is all about looks, not his acting. I will not malign someone for having a career. I will however state that I do not understand the requirement to find him attractive. If you want to know who I find attractive in Hollywood, you will have to dig deep. There are few people that strike me as gorgeous or stunning, especially since we have entered the Anorexia Age of Hollyweird. Health is beautiful. That inner glow of self acceptance can make anyone gorgeous.

Since my blossoming into awareness about privilege I have seen more beauty in the world. This side effect shocked me. I like to compliment people when I find them attractive, and I have had the urge to tell the entire world how beautiful it is. The beauty I see is nothing like what is in the Movies or on Television. I live in a world of diversity. The people I see daily are of mixed race, from other countries, and their voices alone are a rhythmic song.

I am not beautiful by the overly BMI oriented modern sensibilities. I never will be. I’d have to break my bones, cut my body apart, inject myself with dye, and lose my sense of self. (This statement does not mean that those who naturally fit this standard are not beautiful, it is merely a rejection of the expectation to alter myself to be just like them) I reject the need to starve myself to fit a rare body type. I reject the fashion industry’s expectation that “fat” women do not like Fashion. I LOVE clothes shopping, and am discovering that I could easily spend a million dollars on cute shoes. These are cliches about womanhood, and yet you will find I only have four pairs of shoes, two for winter, two for summer. My clothing is all rather sensible, black, and boring.

I am pigeon holed by my lack of thinness. I am trapped by the need for others to stigmatize those who are not identical to them. I am not a Stepford Cripple, I am not anything but a person. I am flesh, I am bone, and I have soul. You are beautiful. My friend who is an immigrant is beautiful. I love listening to her voice, the way that she sings while she speaks entrances me. My friend who is the son of immigrants is beautiful. He cannot see that because his world is full of hatred, hatred of the Other.

I discuss privilege with my friends. It is an unavoidable conversation now. Eventually it is addressed either by discussion of politics, feminism, or simply the venting of frustration. I no longer hide my beliefs, to survive until the next day. I am free to speak them. Most of the time these conversations hold a similar impact, someone learns something. We all do really. My friends are all shapes and sizes. I have friends who are thin, blonde, and blue eyed. I have friends who are extraordinarily fat, but give hugs that are so soft. I have friends of every shape, size, mental capacity, and ability. My friends are all beautiful. You are beautiful.

Stop stigmatizing people for not being clones. Clones are scary, according to the media pundits and science fiction. Every time the word cloning is mentioned on TV it is with the hush of fear. Disability also has that hush of fear. Stop being afraid. Fear stops you from living life. This doesn’t mean you should ignore some fears, such as the fear of hunger or the fear of a snake bite. Stop fearing things that are different. If you do not understand something, educate yourself. Don’t fear it. Don’t shun it.

This includes fine art, not so fine art, but most especially people. Children are people. Women are people. I see often abuse launched at those who are different. I experience it every time I go out. I was reminded however, of the power of kindness and decorum.

I write often about the importance of gentle resistance, passive resistance, and not striking back. I admit I fail this way at times but, every so often I am given the reminder I need, the proof that I am right. I had transferred out of my chair at Sam’s Club, into the van and rolled down the window. Beside me a harried mother of two beautiful children, her disabled mother, and a cart of groceries struggled. I watched in silence, until they were about to leave, calling out to the woman that her mother had forgotten her cane.

Her son looked up as she thanked me, glad to not have to spend another twenty five dollars on a cane, and said, “Mommy, that’s the lady from the Walmart with the kitty!” His mother paused and said, “She was on TV too.” We talked then, and I complimented her for handling the stress. I could see she was frazzled, and I let her kids talk to Sprite while she settled them in. No petting of course, but, I told her how beautiful her family is. Three words. “You have a beautiful family.” Okay, five. I never was good with numbers.

She froze, looked at her kids, and then smiled. “I wish everyone could see that.” The thing I have not mentioned is this. Her children are Triracial. They are of Asian, African, and Caucasian Descent. I wanted to take them home with me, their sweetness gave me a rare pang of desire for Motherhood. It went away before we were out of the parking lot, but not the reminder that everything you do has a lasting impression. Every word, Every laugh, Every shout, every time you teach someone something. There is impact.

What draws me to people is never what they look like. It is instead their personality, the joy they have for life, and sometimes the hope that I can grow up to be like them. I may never grow up. I am always surprised when I realize for a moment I am not a child anymore. It fades, but, that too reminds me to be innocent.

Beauty is not in the eye of the beholder. It is not what media tells us it should be. Beauty is merely in the existence of life. Flowers, Puppies, kittens, children, lovers. All beautiful. Be you a Homosexual, Transgendered, A person of non Caucasian ethnicity, red haired, blonde haired, black haired, green haired, or even a strange shade of orange. You are beautiful.

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.

What is a Service Animal?

Here we go, another in my Guide to Service Animals Series. This question is asked often when you present yourself as a service animal user. When it is asked how do you respond? Through a process of trial and error, here is what I say and do:

Step 1. Take a deep breath. Remind yourself that this is not common information and is only common sense once you learn about it.

Step 2. Talk about it!

The simple step guide is short for this one, and here is what my practiced response is.

“According to the American’s With Disabilities Act, a service animal is any trained animal that assists a disabled person with their daily activities. What this means is that a person who has at least one part of their life altered by a disability has the right to train a dog, a cat, a monkey, a horse, or any trainable animal to assist them. Some assistance activities include medication retrieval, assistance with carrying items, walking, balancing, and even dealing with Seizures.”

If they need more explanation at this point, if I can, I show them the command “Balance” that Sprite and I have worked out, and let them see her assist me in walking five steps. Usually this covers it all. If I am not up to it I respond by citing examples of how she works, or, how other service animals work.

“Only Dogs can be service animals!”

Response.

Step 1. Deep breath, remind yourself  that they are likely uneducated and it is your duty to teach them while being calm so that they actually learn.

Step 2. Recite the practiced statement.

According to the federal law as it currently stands, any trainable animal can be a service animal. Although they must meet specific behavioral requirements such as being quite during a movie, or staying with their human, even a cat or a monkey can be trained. In Albuquerque, New Mexico there is a man with a service duck, a service parrot assists a woman, and recently the New York Times printed an article on Miniature service horses.

“Animals are Dirty. You might make my customers sick!”

The recited and practiced statement:

The federal law prohibits discrimination on the grounds of personal religious belief towards animals, allergies, and therefore you must admit me into this building. My service animal is a requirement for my own well being and as you can see she is wearing a dress. I dress my service cat so that she doesn’t shed as freely to protect other persons. I cannot predict their allergies, but, I do my best to reasonably accommodate their needs, while expecting you to follow the law and allow this reasonable accommodation.”

If there are more questions that need answers, post a comment. If you wish your question to remain anonymous, note it in the comment and I will not make it public.

A side note, there are places that the law does not require access for service animals. These include, religious buildings and private homes. Doctors offices, hospitals, stores, and buildings are required by law to admit all service animals and their users. Any public place must let you in.

If you run a shop and are not certain how to ask about a service animal, ask calmly if the person bringing their animal in is a pet, I can guarantee that the response for a true service animal will be, “No, this is my service animal.” Most people faking the use of a service animal will slip.

Other Posts in the Guide Series: The Antidote for Discrimination Is…

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