The Institute and the Adult (Trigger Warning)

I just wanted it to be in my head. I realized after losing a caregiver because the caregiver broke down mentally that I wanted the problem to be me. I was crying, struggling with the feelings that come with being vulnerable and endangered, struggling to get food, and the pain that comes with moving my body in ways it cannot really handle. I wanted it to be in my head.

If all the problems were in my head and were not real my life could be as it once was. For a moment I had everything, I had love, happiness, my health was improving for the first time and then… it was snatched away. I was starting to feel whole again. Then, I was snatched once more back from the brink of success. Even personally success in this world is a struggle for most people. The minority that masquerades as a majority has made it this way. I just wanted to go back to that place, I imagined it all.

Some of this comes from how much easier it seemed on the surface when all my disabilities were fragments of my mind, that nothing was really wrong with me. I just had to stop making it up. I just had to get a better grasp on reality. As I think in music and color rather than words, the thoughts surrounding that are truly discordant violin notes, the colors brackish. It’s a sensation of mocking. That life was a mockery of life. I was ill, and as long as it was in my head there was no hope of recovery.

If the issues with a caregiver turning violent were just in my head, then, I would still be in danger. That urge to put it all in a neat little package is dangerous. It’s a form of denial, though this denial is socially acceptable. It stems from my being medicalized at a young age. Nothing can just be, it must either have a cure or be a figment of my deluded little mind. Delusion can be comforting. Delusion means that there is nothing I can do about it but stop thinking. Reality requires action.

I am tired of action! I am still haunted by the sensations of my day. That prickling fear as I heard the first crash. I let it go on for a half an hour before I confirmed it. I let myself think it was just me being “jumpy.” Jumpy is code for triggered. I couldn’t ignore it when Sprite began to scream. Sprite, even when she signals things to me is a very quite service cat. She tends to use her paws and a soft flittery meow or a purr instead of a yowl. She yowled. The sounds in the other room were growing louder.

I had to choose. Do I risk my safety and my service animal’s saftey in order to retain this idea that every time I am afraid I am just being delusional? How many times did I do that with my ex-husband before I accepted that he was hurting me? I can’t be sure. However, today I didn’t let it get past once. I had to give up my delusions. I chose life.

Life is never easy. I suspect the main reason that the temporarily able bodied among us want our lives to be inspiring is they cannot concieve of happiness with a disability, as most of them are not happy. They spend their existance toiling for the gain of others. This is less so in countries outside of the US but, it is still a blatant reality. Some of these persons may also be in that same delusion about their ability, or other issues such as sexuality and gender. They waste their reality on delusion.

Since I became aware that therapists are not all knowing, and that my Mother has been desperatly wrong, I have faced delusion many times. Still it can over ride my own instinct to surive. I sit here in a room with the acrid odor of cleaning products, something that is avoided when they are used properly. The antisceptic odor makes me feel almost as if the institution is right there. That is the entire core of it.

If the issue is in my head, then I am outwardly safe. If it is in my head I can handle it. I can control it. If it is real, and no one believes me, I am at risk of being locked up. The core of my terror in speaking out today was in losing my freedoms, because a caregiver has more power than I do. After the agency head Robert spoke with my now ex caregiver today, he confirmed that she admitted she was over reacting to the situation. I don’t know what her future holds, but, I worry for her. I worry too, for anyone in danger that will stay there for fear of the instutition.

Some of the people who come across these words will state, “It can’t be that bad.” I still have nightmares, usually around the times when I have to fight the hardest for my right to merely breathe about the institutions. The place I was was actually not that bad compaired to many. Still all the labels thrown at me, the drugs that made my brain numb and my body bleed? Those were terrifying too. The threats that I would have electroshock therapy used on me if I didn’t behave a bit better. The behaviors that they threatened? Those all consisted of things like avoiding things that made my stomach hurt at lunch, having trouble sleeping, and having nightmares.

Some of the staff were wonderful. I remember their faces in flashes, and the comfort they brought. I remember the coldness of the beds, the tiny windows with bars, and the high fences where the only bit of reality I could see was the top of the bank building where my Aunt worked as a lawyer’s assistant. I remember more the cold showers, being watched. Not being allowed to pee without being watched. I remember the male staff with those. It was never female staff.

I remember the mean staff the most. I had to think hard to survive around them. Some locked me in isolation for tripping. Some punished me for not knowing a new rule that no one had bothered to announce. One in particular made fun of me for gaining weight when I started to eat again, after being a small child with an eating disorder. I managed to conform so they wouldn’t drug me by force. I took all the pills, even the ones that made me sick and lose time. I did my best.

I remember each tour of every facility. Once my mother was gone we got a second tour. We were shown the isolation room, the one with the bed and straps. We were shown their needles. We were told added rules. There of course are always the secrets and ways that a kind person in there may share on how to survive. Each place had it’s special etiquette. Yet always, in each one I was watched while bathing.

There was the one place that is technically an institution that I do not count as such. This is the only place that helped me. The difference there is I wasn’t treated like a waste of flesh but I was a person with needs, responsibilities, and the ability to help someone else.

It is thoughts of the institutions that hurt me that I think of when I must tell someone in authority a truth they dislike. It is threats of such places that keep me struggling to be somehow better than my reality. It is a terror that comes with knowing that as an adult the institutions are forever, and they are far worse than any I had as a child.

It is with that in mind that I wanted my fear to be something caused by a personal insanity. If that is the case, then I never have to speak up. I never have to say a word. I never have to fight. I don’t have to find a way to call for help. I can just mourn the loss of supposed sanity and keep trying to live on the “outside”.

The last place I left, I was told I would be locked up again with in five years. I was told I could never function as an adult in society, that I was hopeless. This was said by a therapist. This was the one institution that helped me. My mistake, the thing that earned me this ruling was telling the therapist, “I don’t think all my pain is somatic and I think it’s okay for me to be afraid I will fail.” My mistake was in believing that something was not a mental health concern, and in believing that I merit feeling what I feel.

I almost was not let free based on that conversation. This was also one of the better therapists of my childhood. Today, I declare myself free. None of it has been in my head. None of it will be. If something is in my head as a fear related to post traumas, depression, it does not mean I have to live in a cage. I promise myself now that I will not exchange freedom for a lie because I risk being caged. I am caged by those lies more effectively.

Lessons Learned

Everyone discounts themselves at one time or another. Recently I have faced a lot of self doubt about my public speaking. My wheelchair has given me a renewed terror of public speaking, something I have not felt since my first speech during my years as the Speech and Debate Captain for my high school. This is another reason I went back to Toastmasters. The idea that I of all people could be afraid to give a speech was just mind blowing.

As an autistic I talk too much as it is. I cannot always stop myself, though that is something I am working on. Without treatment for my autism beyond shame, I learned to bottle it up letting my words flow out like the richest cream on stage. Now, I am going to start a new career as a Public Speaker. The difference between what I have done in the realm of Public Speaking and what I am starting tonight is this. I will get paid.

I did not think I was a marketable asset. A part of this is based on what I have heard my entire life. You are too fat, you are too ugly, no one likes pale people, no one likes skinny people, no one likes you. You aren’t worthy, this is the constant message that has been sent not just my way, but towards most children. Any difference becomes devaluing. I was supposed to go to Career Builders tonight to give a speech. I had it ready, polished, and yet two things occured that had me missing the meeting.

My doctor’s appointment ran late. I met my new doctor and obtained my pain medication for the first time in months. I also am going to see a therapist that specializes in Post Traumatic Stress Disorder AND Chronic Pain. My new medication specialist has told me even if this doctor and I do not work out, he will treat me. He didn’t question the validity of my service animal and was understanding about my nearly running him over. I left empowered, yet fighting Reynauds.

It started to snow as we left the office, and we discovered with only 15 minutes to get to the house and drive an hour that I had forgotten my brief case at the house. When we made it home and I climbed up onto my bed to grab it, I just gave in and laid down. Immediately I called the coordinator but, after that I checked my email.

There it was, the reminder that I had signed up for a free online speaking session with Darren LaCroix. It was free, and I hadn’t been so positive I wanted to help Career Builders yet. Key word being yet. So, I clicked the link to the session, locked William out of the room after he crushed my hands and asked my Person to turn up the heat so I could try and stop shivering.

I wouldn’t have given a good speech tonight due to pain, my brain fog, and shaking like a leaf in the wind. I couldn’t remember the opening to my speech and every other word came out as a breathy gasp. I also fell outside of the Comic Book store and my body couldn’t match my brain in fluidity. As I laid down and began to chat with the others in the audience, I woke up inside a bit. I realized a few things as the session wore on. I was left feeling like an asset and not an… well you know.

Some of the information, which I do not want to give in detail here so that you have to go and seek out Darren’s teachings, was pointed and was really just in the form of a question. If you answer it, you have a small portion of what is needed to sell yourself. Other points were broader, metaphorical yet directed.

I am now going to speak for Pay. I will learn how, and the beautiful thing is simply this: I am sellable. I am marketable. It isn’t just being a beautiful redhead, a capable person with a disability, it is also being able to share the information that I have gained through experience and broadening my audience.

I learned a lesson tonight. What is the lesson you have to learn? What will help you find the inner spark? I had lost it this week and now not only is my inner spark found but so is my future goal reset, bigger and brighter than before. I am reaching not for the stars but beyond them, for, I can’t fail. I can only win by trying.

Firing your Doctor

I followed a link in a blog and it lead me to Alas, a Blog. I found there a well written essay on undiagnosed chronic pain. The focus is on women and is intersectional because it deals with discrimination and medicine. As any disabled person knows, doctors do not always listen. It is easier to get a diagnosis when they are fresh out of Med School, but that diagnosis can be wrong via wrote of inexperience. I have written two other How To posts, and this is the third. How do you fire a doctor?

Step 1. Determine why you do not feel you are recieving adequate care. At times this comes from a doctor being frustrated that you are not magically cured of your congenital issues, and then losing their effectiveness. Other times this comes from sitting in the ER for three days wishing you could just get some help, being told “No drinking or eating, the doctor might need to operate” and being told that they can see nothing wrong with you, without tests.

Lets start with the latter first.

Step 2. Become the Bad Patient, Angry Cripple, or Annoying but Empowered Patient who knows their body better than their doctor. Most people when seeking medical treatment have a vague idea of what is going on already. They know where it hurts, and yet it is not really their job to know why before they get to the doctor. Most people in the Emergency Room are often disoriented, queasy, and focused on a fast cure. That is the tenet of the ER. When you do not get your care you must ask, as calmly and politely as you can, “I want a second opinion, can I please see another doctor?”

Expect anger. No professional wants to be second guessed. None of them like it, but some will gladly send you to see someone else.

Step 3. When they decide to ignore it and try and send you home, you might need to call an advocate. If you are disabled it is easier to find advocates, but if you are able find someone who is coherent to help push for your needs. This step is best done before you are in the ER, but, sometimes you can find a patient who knows how to handle it and is willing to help you. This advocate will help you repeat your request for a second opinion over and over until you finally see another doctor.

Step 4. If you can, remember to breathe between each step, each sentence, to try and retain a claear head. It is horribly annoying but remember losing your temper will make it worse for you, and no one else.

Step 5. IF you are in an Emergency situation and are at risk of death, DO NOT GO HOME. You need to stay there, even if they want to send you home. You might need to sign in right off, after leaving. If you are uninsured this can raise your bills. This is horrible, but, if you are in danger of death money is not an object.

Returning to our first scenario, firing your Primary Care Physician:

Step 2. Write a letter to your doctor, you are not sending this letter but you are detailing out why you do not want them to see you any longer. If you are insured you might need to write a letter to your insurance explaining these very things. You will have to explain to your new doctor why you left your previous PCP (Primary Care Physician) or Specialist if they are in the same health care system. In many cities one stands above the rest for their level of care, my personal choice is to stay with in the system I know and trust may differ from yours.

Step 3. Try and find a list of approved doctors with in your insurance, if you have insurance. If not, then, this step still applies. Find a list of doctors. Depending on how you work you might want to contact your local medical review board for a list of physicians with complaints against them. In America this is legal, if you are not in the US, you can still find this information. Some of it is available on the internet. If you still trust your previous doctor, try asking for a recommendation.

Step 4. Write a list of your known medical complaints, when and where you were diagnosed, if you have any preexisting conditions, and write a list of expectations for your doctor. Remember to stay reasonable, you cannot expect your doctor to do anything that goes against their personal morals or professional morals.

Step 5. Make the appointment. If you do not feel safe, do not stay in the appointment. You have freedom, you can leave at anytime. IF this is the case, start at step three.

There are other times you might need to fire a doctor. Very rarely have I said to a doctor, “You are fired.” I have however, said it most in the ER. Remember, firing a doctor does not black list you from treatment. It does not preclude you from proper care, and it does sometimes make a difference.

Your pain is not in your head. You can find an answer, do not give up. Remember, there is no such thing as Hypochondria. You have the right to proper medical care. If you are uninsured most hospitals have payment programs, or will even waive the cost if you are unemployed or low income. No money is not an excuse for a lack of care. In the US (sorry I just do not know the other countries laws well enough) you are guaranteed medical care in an emergency, and can often obtain it outside of one.

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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