The Speech (Trigger warning)

What is below lies a trigger filled attempt at a speech. I am going to give a speech about Rape. I have considered titles which are wholly inappropriate, filled with bravado, and would be more triggering and devalue my own experiences, such as “Rape, it’s What’s For Dinner.” Instead, I think the title may just be, “Rape.” My goal with this speech is to educate law enforcement officials and others about the facts of being raped. I also want to use this speech to reach out to survivors and victims, so that they can begin to heal. I think at this time my updating speed for the blog will be once a week.

I also want each of you to know I could not do this without knowing I have support from my readers. I do, and therefore I know I have a safe place to write. Thank you for that. Between paragraphs I am checking the spam folder on comments, I find it a bit frightening that all of them are for Viagra and Vibrators. Those comments didn’t start piling in until I began to write about rape. I am blessed to have a good spam filter, but, that is a terrifying association.

“Rape”

Rape is often used in the media for drama, there to add tension. The Fear of rape is something that most people have felt at one time or another. Rape can be defined in many different ways. There is date rape, statuatory rape, and then the simple category of rape. The words seem simple, yet, there is a strong reaction to each category. Some people are blamed for their rape, some are told they do not matter, and others manage to fight for prosecution. All of the victims of rape are simply that, victims. Rape could be classified as a hate crime.

What makes a person rape? Most rapists know their victim. The rapists get in close, they are trusted, and often it is an act of domination. It is an act of power. I have been raped. What power does a small child have? I do not know. Perhaps it was the power of life. My biological father was the first person to rape me. He brutalized my body, he tore me to pieces, and then he left me fearing that no one would believe me. My mind suppressed the memories of the worst attacks in order to survive. For years, I dealt with a monster in my bed. I would have rather had the monster under my bed, a figment of my imagination. I did not have the luxury of unfounded fears as a child.

In my journey for healing I began to remember, and due to the law at the time I could still prosecute him. I went to the police. I discovered the horror of being devalued. It is important to support victims of rape, instead of turning them away. The then Albuquerque District Attorney told me, “Your case is just not compelling enough. It won’t matter no one will care that you were raped.” Compelling enough? I still do not understand his choice of words or actions. Why does a case need to be compelling? Justice was lost that day. I was left with the horrible realization that he didn’t care enough about me to do anything. I cried for weeks, for I had wanted to protect other people from my father. I didn’t think he would stop just because I grew up.

I was silent for years after that about being raped. The years of silence festered in my heart. I took the blame onto myself. I presumed I deserved it, because why else would no one else care? It wasn’t until I reached adulthood and began to study law that I understood. My case wasn’t one that would get him political attention. My rape wasn’t important enough to him because he had no basis for what damage could be done. If I had been his sister or mother, he would’ve been enraged. A small and defenseless teenager? He could do as he wished with my rights. I had no way to fight him. I decided then that I wanted to become a lawyer advocating for children, especially those who were sexually abused. Although that has yet to happen, it is still amid my goals.

Another facet of rape came into my awareness as I was forced to confront disability. Bodies that are not as physically able or minds that are not cognizant of the world around them are more likely to be raped with less action comitted to the effort. I have been lucky as a woman with a disability, in that I can still defend myself. I had a “friend” try and rape me a few years ago. I was vulnerable, hurting, and had just found out my back was broken. He made excuses after the attempt. It was only through knowledge that I protected myself. I retained the use of my arms and used the bits of martial arts I could still perform to keep him back. He still hurt me, but, the violation of my body was prevented.

In any country people with disabilities are more likely to be raped. Many people believe the myth that a person with a disability cannot be devirginized, and as the myths pervade about disability and sexually transmitted diseases this leads to thousands of people becoming infected. I have run into the police even locally refusing to enforce any laws that protect my human rights, as a disabled person. They do not listen, and women without disabilities have to fight just as hard to have validation legally. Doing so just after a brutal attack is not just difficult. It is as impossible a task as Climbing Everest.

At the risk of triggering memories for any persons who have been raped I am going to try and describe the emotions involved in being raped. Helplessness. You cannot stop them, you are not strong enough, fear. Are you going to die? There is pain, emotional and physical. The sense of violation doesn’t wash off, even if the evidence of the rape can. You can never wash away the feeling of fingers, hands, and other parts of your rapist entering you. Time might dull that sensation but, the knowledge that you could not stop someone from entering your body is always there. It haunts you, it chases you. Empty rooms, dark nights, and hallways all become places where you might think you hear their voice, or a breathy little laugh that sounds like your assailant. It becomes harder to function, harder to go out. Sometimes it is impossible to stay inside. You want to flee. You want to scream. Some of the victims of rape do. Usually this ends with a brutal beating. Some are too afraid to make sound, and are left to wonder, if I had only screamed would I be saved.

Forever, you carry the burden of wondering what could have prevented this. Some, who know their attackers may not press charges out of fear for their lives. They are left knowing that their rapist is right there, able to harm them again and again if they so desire. Everyday activities become moments where you fear, where you must protect yourself. Even when you don’t know how.

If you are able to try and get police help you must relieve at least a few times the assault, with as much detail as possible. You must allow a stranger to see if they can find evidence inside of your body. You must also wait. What if they do not agree you were raped? This happens often. The police don’t bother with a rape kit, or they decide a person is unrapable. “You are too ugly to be raped.” This sentence is used to justify a denial of justice, to justify mocking a victim, and to justify the excuse that fewer people are raped than the statistics say.

The famed statistic states that one in four women is raped or faces an attempted assault. This might be accurate but with rape there is a huge gap in information. There are no accurate statistics for rape of the disabled, the rape of men, and the rape of women. These statistics try to compensate for those who do not speak up, those who cannot speak up, and yet without actual numbers they fail the victims and potential victims in many ways. The room for error leaves room for disbelief.

The second person who raped me was also someone I knew. I was in Elementary school and this boy decided that he needed to prove to me I was worthless. It didn’t matter that I had no faith in my self or my right to exist. It didn’t matter that we were friends. He pulled a gun out at his fathers house and held it to my head while using my body. I did not handle this well. I was positive no one would believe me. My mother didn’t, I did try to tell her. I had a history of behavioral issues that directly stemmed from the abuses I dealt with as a child. I took my own revenge. I was the one who was punished. I broke the windows in his parents cars, his house, and then I beat him with a metal pole. This course of action landed me in juvenile detention. He never was punished legally. I paid for my crime and his.

I am not finished healing from the experience of rape, but I am sharing with you the facts that I know. If a woman comes forward saying she is raped, she needs the benefit of the doubt. The rape culture in the United States teaches us that she must have deserved it somehow, that ugly women do not get raped, and it teaches us to shame the victim. The media perpetrates this, and despite the best efforts of parents, teachers, and even some of their peers, children do absorb these subconscious lessons.

Rape is a very real crime. It is painful, and it can change the way the victims of rape see the world. Many develope Post Traumatic Stress Disorder, their minds taking triggers from even a smell, and plunging them back into the memories of rape. Many choose to push people away, becoming angry. Some decide they deserved it and throw themselves into dangerous behaviors to try and not feel their pain anymore. Every victim of rape is effected. There is no set response to rape. Some victims may be quiet, appearing calm, others may scream and rage, and still many more may choose actions that include suicide.

If you or someone you know has been raped, or you suspect that a child is being abused please support them and assit them in contacting the police and the local rape crisis center.

At this point I will have my Person hand out little cards with the local crisis numbers listed on it. I do want feedback. I will rewrite this a few times, publicly too. I lost the spark part way through due to my cat jumping on me and spilling juice everywhere. He also deleted a page of vital statistics so I am off to find them.

Speeches

I have promised a catalogue of my speeches. So far these are the files I have gotten uploaded to Youtube.The youtube account name is TextualFury. I know some of the videos are flawed, okay all of them are. Feel free to comment here or on youtube if you have any input.


This speech is titled “What is a Service Animal?” At the end of the speech a copy of both the Federal and State law was handed out, with my business card as I could not explain the entire law with in even three hours. You can see me stand, you can see Sprite the service cat in action too.

This is a speech that is meant to explain my wheelchair. It is called “Thirty Seconds.” The goal of this speech was to work on my gestures, something that I find more challenging since breaking my back. I had to work through a lot of pain to even write the speech. The physical portion wasn’t painful during this rendition, though developing each motion was.

This is the same speech as before with some rewrites. I am trying to focus it into an inspiration with a call to action just to think, to help others, and to hope. This is a better angle but the sound is out of sync.

Here is my Person giving an extemporaneous speech that is meant to last between one to two minutes. Now you know my secret, he’s talented, eloquent, and adorable.This is posted with Permission.

His question was, “What was your favorite TV show during your childhood?” His answer for those who cannot view the video, was MacGuyver. I am planning to transcribe the other videos, though this will take time and I have no idea if I will get to it soon at all.

One final video. This is just the beauty of the local campus. Soft, beautiful birdsong and bright green ivy. This was filmed after the second version of the Thirty Seconds speech and Paul’s tabletopics. It was just too beautiful to not film.

Kitty Retiree

I judged a Toastmaster’s competition today and did so without Sprite at my side once again. My beloved Service cat has aged, she has begun to fall ill too often to work, and now is a retiree. As of this morning I no longer have a working service animal. Not outside of the house anyway. Sprite will still travel with me if I will be going somewhere over night, but beyond that? I do not feel confident in her ability to perform or to stay healthy. Despite my happy day this is still a moment of sorrow.

She is six years old, and with her history she has worked long for her life. She came from starvation and ill health, therefore I cannot fault her for her body quitting. She was upset I left her this morning, and there were consequences, but there were still good points too. It turned out a service dog who doesn’t behave at all around cats was at the contest today. Sprite’s at least partial retirement saved us from a fiasco.

What does this mean for me now? Well, it means I need to find out if there are any dogs I am not allergic to, I need to consider a horse though I do not think a horse will be compatible with my life style, and I need to start saving up cash so that I can feed another animal. Sprite will no longer need her monthly payments though I think I will continue them, so that she has the benefit of consistency. Perhaps I am wrong and with a bit of extended rest she will resume working. I still need to persue another avenue.

Does anyone have a service poodle? I know I am not allergic to purebred poodles. I had one once upon a time, and depsite his behavior issues I could pet him and brush him all day long, without any problems. No rashes, no boils, and given that the Hidradenitis Supprativa has it’s own sets of issues the last thing I need are more sores and skin problems. I will begin my quest for a service poodle, though this could take years. I feel fear, I feel sorrow, but I am happy for Sprite and William. They will get to play and pounce daily. Sprite also can protect my socks.

That is William’s latest fetish, he has stolen my socks! My Person caught him in the act this morning, and described the act as cartoonish, cute, but ultimately detrimental to my ability to own socks. Sprite can take care of him, she won’t be lonely, and that is important too.

This is my first loss of a service animal, but I am thankfully able to keep her around as a pet. My heart aches, yet she is alive. That is reason enough to celebrate. I do know I cannot handle training my own service animal at this point in time. I am too weak physically to cope with a dog if they misbehave, I cannot afford to introduce another cat into the house at this time as the two we have are bonded and the other cat would cause mayhem.

The ecosystem of my household is balanced, My Person does what he is needed to, we also share our love and intimacy in ways that are unique to each of us, the interactions and feeding schedule with the animals has it’s own balance, as do our activities out of the home. The balance must shift, but, to add stress to the lives of my animals adds stress to me. A dog will be stress yet a cat moreso.

My one regret with sprite retiring is selfish. I regret that she cannot be with me to tell me when my body is going to fail. I regret that she cannot remind me to take my medication, she is my caregiver. I must adapt, yet I feel that same fear that I felt when I started training her. What do I do now? How do I grow? How do I continue living?

I do not have the exact answers but this is another learning point. I have no choice but to go forward. I choose life over stagnancy. I will adapt. I will find a way to thrive, i will find a way to live. Sprite will have a longer life if I respect her medial needs, and I cannot be cruel to her. I love her too much to force her to risk her safety.

Remebering Julia

My silence yesterday was due to being out of the house paying bills, doing a little shopping at the best Thrift Store I have ever seen, and driving out to another city so that I could attend the memorial service for a friend who recently passed. Julie was special. I remember her in sweetness, I remember her liveliness.

I also will never forget the lessons she taught me in surviving pain. A lot of what i figured out about ability was the attempt to mimic her behavior. You see she had Lupus, there were probably other things that ailed her but her body was weak like mine. She was in pain. She was also always smiling, ever sweet, and even when she was being tread upon had something positive to do or say.

What would Julie Do right now? My first few times trying even to get a diagnosis I asked that. How would she keep calm? I am not sure what her exact method was but she became a teacher, even as time took us and separated us. I came back into the life of her husband but did not have the opportunity to visit her before her passing. I think in some ways this is a very good thing. I will always remember her laughing, I will always be able to see her spirit in my heart. I will always regret not seeing her one last time. Even if I had seen her recently, I would have that regret.

I also credit Julie and her husband with teaching me that love can exist. You see, this pair works like me and my Person do. Until meeting them I had not met a happy couple. Every married couple I knew of was either enroute to divorce, unhappy, holding obvious abuse, or they were incompatible and never saw one another. Julie and her husband always were together. There was an intimacy about seeing them talk, there was a closeness that is very difficult to describe but was mind blowing to me.

My teenage self wanted that. I also told myself it was impossible. I modelled some of what I wanted out of love on what they had. Respect, Love, Trust, Faith, and an openeness to all friendships. These made up their life together, and it is what both individuals had. I will miss Julie. I also will support her husband, he is my friend and anything he needs that is in my power I will do. Not just out of respect for him but out of respect for her.

I cried at her memorial. I learned too, that she and I have a favorite song that matches. It doesn’t just match, but, it embodies the spirit of advocacy, it embodies living, and it embodies what Julie was like.

To dream the impossible dream
To fight the unbeatable foe
To bear with unbearable sorrow
To run where the brave dare not go

To right the unrightable wrong
To love pure and chaste from afar
To try when your arms are too weary
To reach the unreachable star

This is my quest
To follow that star
No matter how hopeless
No matter how far

To fight for the right
Without question or pause
To be willing to march into Hell
For a heavenly cause

And I know if I’ll only be true
To this glorious quest
That my heart will lie peaceful and calm
When I’m laid to my rest

And the world will be better for this
That one man, scorned and covered with scars
Still strove with his last ounce of courage
To reach the unreachable star

Julie reached that star. She reached the next unreachable star, and the next. Thank you for changing my life, for showing me a path to live on, and for being such a brilliant woman. I do not cry for many, but, I am honored to cry for Julie.

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.

Gently Doth She Wake

I slept hard lastnight, I was exhausted after my speech partly because I stood for about five seconds. Not long for many but my legs have been getting worse and worse lately. When I woke up I discovered two things. William had finally learned how to wake me without hurting me, he gently pawed at my stomach until I groaned at him, and, my giant pillow had somehow gone from under my head up onto my legs and my blanket was gone. Sprite was curled up atop it like the queen of the castle, staring at me, after I put my glasses on, with a look of pure contentment.

The speech went well, I will polish it, give it again, and see if any of the speech resembles what came before. I doubt it will, though the informational content will be the same. I learned something about myself last night, I learned I still have what it takes to give a very good speech. Until last night I had been doubting it, perhaps it was just luck that had my words coming out smoothly before? I wasn’t sure. I am nervous when giving speeches again, something I have not experienced for a very long time.

I felt like myself giving a speech, I could feel the words, I could feel the timing, and I could feel the pacing. Each gesture was right, and fluid. I had considered standing before, but wasn’t sure if I could until the moment when Sprite moved to help me balance. It felt good. I felt young, not that I am old by any stretch of the imagination, but it seems a bit of myself was sleeping, until then. It woke slowly, but I forgot the fear of the chair, I forgot to worry about how it might look to the outside world, I forgot to fear prejudice.

Now if I can just bottle up that sensation, I would give it away for free to every person with disability, every woman, every child, and every person who has dealt with abuse. I do hope that every person finds it in them selves, it is important to wake up, and see that no matter what you are a person above all, and that the world is full of those who can see that.

Corned Beef Homelessness

I was humming “The Rising of the Moon,” today and remembering Saint Padraig’s Days past. Part of it was the entire discordance in my body, the rest of it was a mixture of too much green and random facts about Saint Pats. I had seizures all day, starting directly after the TVC Toastmaster’s Meeting began. This left me exhausted, and my mind was not on the evaluation.

I still did my best, but, instead of baseball I wanted to think about the children i used to know. When I was homeless, at the first shelter I was running under the presumption that there was no joy to be had there, no safety, no happiness, no love. So far this had been proven correct, until I woke up on Saint Patrick’s Day Morn. This was about four years ago, I was all alone in the world. What woke me was a soft bundle of skin clinging to me tightly, crying.

The little girl was blind, and could not tell where her mommy was, and I felt nice and safe. So, sitting up I carefully ran a hand down her back and asked her what her mother’s name was. It was an hour before wake up call, and the girl had just gone to the bathroom, but her mommy had left her there, or so she thought. I put my shoes on and forced my body to move. Once I had my footing we walked to the bathroom, through the snow, my coat wrapped around the girl. I was cold, but, she was smaller and I decided she likely needed it more than I did.

I could hear someone calling, “Maggie?” In the darkness, I could not see but I could hear her. “I hear my Mommy!” The relief filled the child and she wanted to run off, but was afraid because this was their first night at the Shelter and she had fallen a few times, trying to find her mother. We made it to the bathroom, over 500 yards from the main building. Her mother was in tears when she saw her child and scooped her up. “I thought you were gone forever.” They said this in unison. I took my coat, her mother had hers, and wrapped myself in it, creeping back to bed.

I tried to go back to sleep but it was too late for extra rest. Still, I reasoned this wouldn’t be a big deal. They often treated women like garbage there, I am certain they still do. This day was different, if you could ignore the fact that the men had a restroom inside the main building and did not have to go outside with wet hair, they even had six toilets instead of just two and theirs was accessible. I couldn’t ignore it but was told if I so much as protested I would be out with no shelter.

When we cleared the floor, set the tables and had our breakfast, a bowl of sugary cereal each, the children came in. They rarely got breakfast, unless someone saved it for them, first come first serve, and children without a home are just as reticent to leave their warm beds as those with. I often saved my cereal for a child, and this morning I presented it to Maggie, after it turned out there was no more food. She recognized my voice and told her mother I was the nice lady who had saved her. I smiled for the first time, since losing my home. For a moment I didn’t hurt so much either. Then my stomach started whining at me, it wasn’t hungry it was just the sheer amount of allergens I had to eat in order to not die. The knife’s edge I walked on had become narrower and more harrowing.

I pulled on the very shirt I wore today, one of the few I managed to salvage. It was my only green at that point. I let my hair down, liking how it felt. I felt pretty again, a first since my back injury and homelessness. I wanted to dance, though I did not trust my legs for that. Then the staff asked for volunteers to run arts and crafts. The adults all grumbled, no one wanted to bother with the kids. I raised my hand. I have this strange reaction to chances to do things, I usually say yes.

There were acrylic paints, glitter glues, glitter, glue, and a lot of paper. I was given the one pair of scissors and we set out to work. Maggie was the first to want to try something, so, I helped her cut out clover and let her smear the glue all over the paper. She was having a blast. I remember her laughter, “It’s gooey!” Her mother watched, but less carefully since I had returned her unharmed without knowing either of them. Another girl came over, then a boy, and they made green paper chains, then, on white paper we painted leprechauns. Soon, the entire building was covered in green.

That smile kept returning too. After the first chain was hung, a few of the men began to pin the decorations, growling out playfully, “We need more green over here.” Smiling as one of the kids ran a decoration over, the smiles started to spread. By the time the annual news cameras came, filming us just to show how great the people who run the place are everyone was smiling. I remember the reporter, a short man with a puce tie, muttering, “Why are they so damned happy? Don’t they know they are homeless?”

As we sat down, a kind man bringing me a plate as I had begun to fall over again I realized why I was happy. I had stopped focusing for one day on my homelessness, and had instead focused on making someone else happy. I wanted to make sure that those kids had a happy day. I wanted to see their smiles. It was cold out, snowing, but inside the warmth of family and friends was found. I also had the first meal that was not going to make me sick since arriving there. Corned Beef with a side of freshly mashed potatoes. There was enough for everyone, a rarity there. I even was allowed seconds on the meat and potatoes.

I hid from the camera, this was helped by the smile that would not abate, I could not stop grinning. After all, the children were laughing, our temporary home felt like a home for once and until it was time to sleep no one fought, there was no need to try to steal food, and we were all content. The next morning there was no green, just the cold snow. There was too little food once more and it all went back to being a gray existence, dull and painful. Except, that I still felt happy.

My happiness was not permanent, yet, my acceptance that I could feel happiness made it easier to exist in a state of contentment. Without that day, I might very well have been too depressed to fight for survival a month later, when I nearly froze to death. That shelter is a special hell, for those in need, for those who no one cares enough about. It is not up to code, safe, and they do not try to make you safe or happy. It was merely a whim that lead to that one day, a kindness so rarely given.

As more and more families lose their homes, they head to shelters just like that one. Today, I remembered my own agony as I fondled a bit of green paint hidden just inside my sleeve, the paint stain is left over from that day. I too considered why I kept the shirt, and I realized despite it being a bit uncomfortable, always too warm , I keep it because this shirt has memories attached. It isn’t just the shade of green that sets my hair afire, smooths my skin, and makes me feel absolutely beautiful. The beauty I feel is instead in the subconscious associations with happiness.

When you have nothing, you still have your soul, your life, and the ability to love.
Happy Saint Padraig’s Day. May the road rise to meet you, your friends and family greet you, and love fill your heart today.

When the Fantasy is Reality

I had to just sleep after the Toastmasters contest today. My chair, not working with my body since the chairfall, caused seizures. Again. I felt frustration and kept bouncing between one of the conference chairs and my scooter, pretty much between every speech. I felt paranoid about that but decided in order to judge and properly evaluate I had to try for the comfort level that was necessary. It did work, it was just obnoxious.

After the contest I had people asking me if I was me. I haven’t seen some of these men and women in seven years. Not since I was the one up on the stage giving a speech. I think it was about the importance of feet. I had to explain the chair to these people, but, instead of revulsion there was only acceptance. My brain rejected this.

Most people with disabilities, upon their disability becoming apparent face a world so full of revulsion that it is impossible to find a place with acceptance as the norm at first. It is common for persons with disabilities to face stereotyping, because of course if we want access we are just angry disabled people. If this isn’t what is thrown at us like daggers, then it is that we are stupid, or just not worth the time.

Today there was no question of my intellect, acceptance, and indeed I looked around the room and felt that sense of family again. For me feeling love and contentment with people is very rare. Today was the reminder I needed to reground me, not every place or every person is full of disablism. There will be people in Toastmasters who are, and perhaps places that are in accessible but in this case the majority is acceptance.

It does help too, that I am far from the only person with a disability in Toastmasters. There are a lot of people with hidden and not so hidden disabilities in this organization, some of the more prominent are those with disabilities. Some might argue this is because we have more time, which of course is scoffed at. A portion of disabled people still hold down traditional jobs. The rest of us do not work either because employment is difficult to find or our bodies do not work well enough for employment in a traditional field.

I myself fall into that last category. I do not work at a traditional job because I couldn’t function with in the first two days. My body requires more rest, and does not recoup energy as quickly or consistently. This could be Chronic Fatigue Syndrome, though my doctor and I agree it is merely a reflection of the energy it takes for me to balance, hold my body in place, and to work past the pain.

I am on rationed pain meds, saving them for when I cannot breathe or think until April unless I run into more disablism. Still, the realization of what I have merits trumpets and shouting from accessible rooftops. Toastmasters is my place, I can network there and I can help others. They help me too. I am going to compete in the Fall, during the next round of contests. Not just for the glory of competition, but, for the joy of being involved and active.

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 another  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.

SuperCripple VS Advocate Woman! Issue#1

Sometimes you have days that feel like everything that can go wrong, will go wrong. Other days everything goes right, even when you least expect it. Today I had a day of Advocacy. I felt compelled to advocate not once, not twice, not three times, but four times. Each atttempt at advocacy costs energy, so, I am considering taking an epic nap right now. Instead, I see this as an  opportunity to discuss advocacy once again.

I found myself waking up to the phone and I actually answered it. I am antitelephone, and since ours does not have a speaker phone option I get pain when I use it. I still felt the need to answer and found myself being told that tommarrow at nine AM I was due for my mammogram. I had some questions, and was reminded the value of questions. Here is a sort of rewrite of the conversation.

“Don’t wear any make up, powders, deoderants or parfumes. These can cause false positives.”

“Great, I have some questions for you. Do I have to lay down during the mammogram? I am concerned about positioning.”

“Uhmn, you have to stand ma’am.”

“I am a wheelchair user, what is your accomodation for this eventuality?”

“Well the technicians can hold you up?”

I felt anger at that response. I should not be forced to stand during a painful proceedure. I consider mammograms painful, due to the fact that they crush your breasts. I will find out how painful on Thursday.I took my deep breath and responded with this.

“Ma’am that is wholly unacceptable. Not only could that damage my body further but it puts me at risk for passing out. I find the notion that you can just hold me up until you are satisfied humiliating as well.”

“Please hold.”

I was put on hold for disagreeing with her, though it wasn’t for very long. I hadn’t even decided what to feel about her thrusting me into Hold Limbo. This was good, I dislike being on hold and forced to listen to cheesy instrumentals of current pop hits. I once heard an instrumental of some Eminem music. That was just weird.

“Ma’am I see here you are not over fourty. I am cancelling your Mammogram, you can just get an ultrasound.”

“No, my doctor and I discussed the need for a mammogram. My doctor knows what I need, and you are not a doctor. You are a receptionist. It is your duty to follow the orders given to you by doctors. You can cancel the appointment, but, I would like the number for the head of radiology please.”

I was wide awake now, and having dreamed last night of a future when I was fighting for the rights of others on a National Scale, I felt inspired. In my dream I was the next Civil Rights Leader for the disabled community. My voice was the voice that pushed for training for the police, that pushed and pushed until finally equality came. It was a good dream and pushed me into action. I was put on hold again. She came back and said something I found shocking.

“I don’t have the head of radiology for our hospital.” What? Why not?! Instead I took a breath and asked, “Then, is there someone else I can talk to?” She was quiet for a moment then said, “I think the Women’s Hospital can accomodate your need.” Not only is the Women’s Hospital my neighbor, but, I love that place. When I need an ER I can get in, almost immediately. She did give me the number for the head of Radiology for the Women’s hospital.

I called and made my appointment, and then I left a voicemail for the woman who runs radiology, expressing my concerns and my challenges with the Mammogram. I wasn’t even ready to drag myself out of the bed yet. This takes time and my body wakes up paralyzed. She called back before I had even managed to scoot to the edge of the bed. We’re meeting on Thursday to discuss accessibility with in the confines of her hospital, and to discuss a plan to raise awareness for other hospitals so that women can get their mammograms. She agreed with my statement that a woman should not be denied a medically necessary and preventative screening based on her ability.

On Thursday I will be in a nonchair, but I will not be standing and she promised options for adjustability in seating to protect my body from the risk of fainting. There will also be extra nursing staff incase of the inability to accomodate that. This is challenging, at times my wheelchair isn’t adaptable enough. This was a victory. I negotiated for what I needed and am in return going to fulfill a need for others.

After getting dressed I was going to grab Sprite to take her with me for my speech, because I miss her working and she has finally begun to regain her Meow. She had a temperature. Instead of letting her come out, I had to let her stay in. This either was helpful or harmful, a mixture of the two most likely. Right now she is so glad I am home, that she is curled up on my knees with a little kitten grin. I need some blood work done, and after fasting and making myself drink only water (makes me queasy) I went for it.

My person unloaded me and my chair, and while he hefted the ramp back into the car I went on my merry way to sign in, that way I wouldn’t have to wait. I did not make it in the door. The curb cut was blocked off by a car, a woman sitting inside waiting for someone. I considered my options and decided for passive protest, waiting to educate the miserable soul who could be so inconsiderate. Out came a man who wore a hat declaring he fought in World War Two. He is the first veteran I have not thanked for their service to this country. I feel slight guilt at that, but only in the form that I could not undermine my own rights.

This converastion was full of his hatred of the disabled. His wife had just broken her leg and couldn’t walk to the car. I understand needing to use the curb cut for a chair. Instead of making sure anyone else who might be in a chair could use the curb cut and go inside, he felt the need to take fifteen minutes of my time with his selfishness. He felt the need to make it appear that it is my fault I cannot go over a curb, and that because he fought in the war he gets a free pass. I did my best to keep a calm tone, and success was had. He was not happy when he left, though I did try to accomodate his need to enjoy his able bodied superiority, his white priviledge and his manliness. I did not want to upset him, I wanted to educate. Here is my conversation summary there.

Him: “Move. I can’t pull forward with you there.”

Another car had come up behind him after I had made myself cozy blocking him effectively in his spot.

“Sir, you are breaking the law. You left your car illegally parked. blocking me in the street. Not only did this endanger my saftey but it is a federal crime. ” I then started to move out of his way.

“So what? I needed to put her wheelchair back inside. She broke her leg.”

“Sir, there is a parking spot less than three feet from us. You should have used it. Next time, please make certain that you are not denying persons access to the emergency room.” The ER is right across from the medical lab. I found myself at that moment wondering if today was ADA Awareness for the folks at the Women’s Hospital courtesy of yours truly.

“Well I fought in World War Two.” That part made me want to snarl at him about rights, priviledge and why he fought. I wanted angry discourse. Instead I took a deep breath and responded with this.

“I do appreciate my freedom, but, that does not give you the right to violate the federal law. My civil rights include access to this hospital.” I was out of the way of his car now, and he had begun to snarl. I lowered my voice, just a bit, “You should be aware that I could call the police to have them enforce the Americans with Disabilities act, having you fined. Instead I chose to make you aware of the law. ”

“No one reads the ADA anyway, you’re the only wheelchair person who has.” This man was using the ADA for his wife, so that she could have a reasonable accomodation of transport to their car. The ADA protects his right to medical care for service related disability, as do other non ADA laws.

“Sir, I am afraid you are misinformed. Most disabled people discover the value of knowing their rights, so that when people discriminate they can educate. You should try reading the ADA, you might be surprised at how much it effects you.”

He finally got in his car and snarled at me, “No one cares about you gimps.” It was difficult to not give him a rude gesture. Instead, I smiled and said, “Sir, I am not a gimp. I am merely wanting to go and get a blood draw. I need my cholesterol checked.” He turned purple. When people turn purple I always want to see if a purple people eater is around. This makes me relax, internal laughter at their overreaction feels good. “Have a nice day sir, if I see you doing this again I will call the police so that you can pay the fines. The minimum, I believe is about $500.”

I was reacting to my sun exposure at this point. My right ear was throbbing, as it had been for some time, and my back ached. I signed in for my blood draw, then began to see about getting my sleeves up. My good arm for blood had developed a giant sore right over the spot where the needle had to go. I have two spots to draw blood, one in each arm. Everywhere else is not an option. This meant that even the small children’s needles aka Butterfly Needles were not only necessary but any deviation could result in my bleeding. I have the hemophiliac gene and often display symptoms, though, my doctors assure me this is not true hemophelia. I agree with that diagnosis as I do not always bruise easily. At times I am injured and no bruises appear in my flesh.

My next and third for the Women’s Hospital opportunity to advocate came as soon as I went back with the tech. I reminded her of my need for a butterfly needle, and she went off to gladly accomodate me. She was great, and it turns out a med student. First, I had to argue with her teacher about the butterfly. They apparently keep them locked up now, to cut costs. This means if she is not there, a person needing a butterfly cannot get their blood drawn.

“Ma’am my student tells me you are requesting the butterfly needle. We reserve those only for people who actually need them.”

“Without the use of the butterfly needle I bleed enough to require hospitalization. Also, most of the time I then require six or seven attempts at penetration.”

“Are you a hemophiliac? You don’t look like a hemophiliac.”

Slow deep breaths. I had left my person out in the waiting room. I may be terrified of needles but I am not about to have him hold my hand when I can control my terror.  “That is discriminatory. Not only do I suffer from excessive bleeding, as I stated to your technician, but, declaritive statements that try to diagnose ability based on appearance are disabling to this hospital.”

She made a face and said, “I’ll call the head of security and have him escort you out.” Disagreement means I cannot have my blood test? I put on my inner Mule and let my stubbornness guide me.

“I’ll be contacting my local ACLU to sue this hospital. In this economy this hurts more than just you. I do not want to have to sue, and yet, people like you perpetuate the stereotypes of disability. Calling security merely proves your need to dominate the wheelchair user who knows her body. You will provide her with the butterfly needle, you will also apologize for your bigotry. I do not care if you actually mean it, but, if you want to discriminate, I will fight you. I will fight you so hard that you memorize the ADA just to survive the onslaught. I am just one woman, who has made a reasonable request. I have a speech to give in the next hour, and I would rather do that than bleed out in your hospital over your under educated notions.”

This was a bit harsh, but, being straight out nice was not working. I said this mostly tonelessly, trying to not let my anger win. Yes, I threatened to take legal action. This is my right. I have the right to sue for action when I am being discriminated against, denied proper medical care, and I also know the power of my words. She apologized, gave the tech the b utterfly needle and walked a few feet away to watch the student work. Her apology was a muttered thing that I barely heard, but, she relented. Before I tell you about my educational moment with the tech, I will say this. She stopped me on my way out and asked me where she could read the American’s With Disabilities Act. I wrote out several URLs for her. She will not make the same mistake again, especially as she is now educating herself.

The tech was curious. She asked me how I knew what to say and do. She also discovered that aloe allergies exist. I watched her reaching for the green gloves, the name on the box actually clear enough for me to read.

Me “Do those contain aloe? I am allergic to it.”

She grabbed another nonlatex glove, “Really? Sorry about that. I never considered allergies beyond latex. Do you have a lot of allergies?”

“Yes, I have enough that I have to be on constant guard against them.”

She nodded then and asked, “So,  how did you learn about the ADA?”

“I was told I was healthy as a child, but crazy. I was told I hurt myself because of the sores from one of my genetic conditions, supposedly rare. Hospitalization trained me to try and hide everything wrong with me. As an adult this challenged me to accept my diagnosises. The doctors had been wrong. I was treated for hypochondria.”

The H word caused her to roll her eyes, “So, you really didn’t need the butterfly then.”

“No, I do. I have medical documentation for the need. Hypochondria does not exist.”

“Ten percent of the US population has it.”

This made me smile. I love the statistics game sometimes, it can be an easy win.

“Okay, how many people have hard to diagnose, rare conditions such as Ehlers-Danlos Syndrom or Fybromyalgia?”

“Uh 30%.”

“So, with these numbers increasing daily, people suffering for years with their invisible illnesses and the like, what would you guess the percentage to be for undiagnosed illness?”

“40%.”

“Well, if Hypochondria is in just ten percent of the population, then, that covers your instances of hypochondria. It does not exist. I am in this wheelchair because my pain was not allowed to exist for so long, that my invisible illnesses became visible.” She was quiet, and finished the draw before she said.

“So, what other disorders of the mind aren’t real?”

I shrugged then, and answered honestly, “I do not know, but, statistics cannot accurately guide you or any other medical profession. They can only analyze the data that is present.”

This was the fourth chance to advocate. I am not counting the usual advocacy for safe food at fast food resteraunts. Dairy Queen had an employee who didn’t comprehend about no bread and no pickles. Her manager is going to read the new ADA ruling, I gave her a heads up that more people with food requirements will venture out now, and she should be prepared because when her employees tell someone to just eat paper and ruin their food, it will hurt her. Some advocacy and education comes from the strangest places.

I made it in time for my speech, the first speaker, Don Dubois, is an advocate for Lupus. He gave an educational seminar on how to negotiate. I learned from this, and had some of my own self discoveries reenforced. I picked up new techniques I will try, and, I got to see a great speaker. His disability melted away as he worked the room.

My speech, Wordabration was hard. I admitted for the first time outloud to a nonmedical group that I have suffered abuse. I admitted the challenges behind why, and honored the words that lead me to my freedom. I explained my wordabration, and recieved a standing ovation for my speech. I am so happy to return to my Toastmasters Family, that I used the words. I even remembered my closing.

I never use notes for speeches, I panic if I forget something, and then I ruin my flow. Everything felt like a scene from a movie. Everything felt wonderful, safe, and I was awarded the best speaker award for this week. To me, for my first speech in six years, this is a great honor. I am going to evaluate a speech next week and volunteered myself to work more speech contests.

I came home to a half dozen voice mail messages, and ran out of advocatability today. I had to have my Person make some calls for me. Walgreens automated system had gone insane, trying to deny the prescriptions, deleting one, and filling one.I also had my right earlobe explode. Apparently, since mid December when I last wore earrings, I had a growing abcess. It hurt, and now I have five holes in one earlobe. I am certain I just lost the ability to wear earrings.

This is a fairly average day, when I think on it. Every chance to educate must be taken. I feel at times like the world expects me to be SuperCripple, flying my way around their bigotry. Instead, I aim for Advocate Woman, Advocating her way to JUSTICE!

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