Privileged

We live in a world of priviledge. White, Male, Able bodied, and sexual are merely a few. My awareness of my disability became a journey into the cryptic world of truth. This is a part of what has lead me to become a reporter for a local paper. The staff understand that due to my limitations I cannot always “do it” but in turn I understand they have questions about who I am. My questioning mind seeks information out, and I never stop analyzing. This means I also have some very high standards for my social interactions with people. I know what I like, and screw you if you cannot maintain a consistent approach.

Having a diverse friend base, this does at times cause internal friction though I have only told the people I am rejecting to go away. I resort to the screw you if I cannot get through to them with the concept that I am not their friend. This as an adult has occurred with two people repeatedly. Today I told my fiance about a woman, Cynthia McKinney who was kidnapped in a foreign country. He hadn’t heard about this. I admit since we rarely watch the TV this isn’t a surprising factor, though when I mentioned that not many others had, excluding the twitter users and bloggers none bothered to talk about her capture, he was floored.  He then said the most wonderful thing, for it filled my heart with joy that I live with a man who is aware of his privilege. “It’s disgusting. We have these rules, that allow people to do that crap and feel better. It’s a band aid over a slit throat that’s dirty, old, and infected. Sure, we think we’re fine but our body is dying.”

Our body is dying. I think on privilege often. Neither of us can ignore it. As a disabled woman, I run into privilege daily. If I leave the house it is there. Yesterday, I was told just how convenient my wheelchair is because it has a sunshade. In my brand new effort to not be Super Cripple, I said, “Absolutely, I only had to break my spine, become homeless, and develop an allergy to the sun in order to have this convenience. Want me to help you get one? I am sure I can find some way for you to become disabled.” I said it with a smile. The cold knife of sarcasm caused the cashier to falter, she looked down, and then I was invisible. She handed MY change to my fiance. He tried to correct her and pointed to me but she just set it down.

i made a choice to use the cutting words, yet this is not the first time that this same cashier has said this. She doesn’t seem to remember that she has done it, and I don’t need to be exposed to her ignorance each time. My fiance and i talked about it before I went home by myself, wanting the sun on my skin and knowing that the side walk was safe between the shopping center and the house.

He asked, “Are you okay?”

I replied with a frown, “Yeah, well no. I am so tired of that same behavior. I think I may write the store manager about it, though the other employees also do the same stuff.” Each time we go in, I have someone leaning on my chair, patting my head, and in general am treated like a child. This is a national chain, and my fiance having worked there knows that Walgreens prides itself on how it’s employees are given sensitivity training. With a higher than average rate of ableism in this store, I think the trainer was flawed.  Every time we go in, I am required to educate someone. It is a burden. I usually just need a cool drink to lower my body temperature so that I don’t faint. I may actually just want to get a candy bar. Why am I forced to deal with their ableism? I cannot do so in silence, or it will get worse, but it is exhausting.

He nodded, “Maybe you should offer to retrain them. For a fee.” I laughed but seriously am considering this. I also plan to detail for the management just how much we buy at their establishment. My fiance is lumped into a new category with me. Each time we are out he is given the pitying look by someone, and often has mostly older persons (yes, an entire generation of people oblivious to privilege exists) whisper to him how nice it is that he takes care of the wheelchair woman. Most actually say “Stupid cripple.”

Sometimes I relish his responses, how can I relish the pain and shock his refusal to blend in with other people causes? I think it’s the freedom it feels. I almost feel like I don’t have the right to do this and that is when I start super cripping. It’s a stolen moment of equality, a moment which by all rights is mine, but has been taken from me by the limited acknowledgment of generations before. My favorite response to a person doing this was actually a few days ago.  He was more frustrated than I was, it was July 3rd and we had to get food. Sprite was tucked up in my sun shade and was very miffed that we hadn’t gone home, but without food there would be consequences. All of the local stores were closing early.

I had just cursed someone out (I really said the”f” word) to get her to keep her hands off of me, and it took the threat of bodily harm via the Scooter to get her to step back. I was seething, then my person, my wonderful person comes and gets what we need off of that aisle. He doesn’t know it’s the same woman, as we are walking towards the next section she sidles up to him, I allow this because I am sure she’s about to tell him how evil I am. She says, “It’s so nice you can tolerate that thing.” Thing. Dehumanized in one sentence. He turns a bit red with rage, but she’s about my mother’s age, old enough that hitting her is worse somehow than hitting someone in our age group. He wanted to, it was there. We were both seething with exhausted frustration. “I mean, cripples are such burdens.”

I heard his response though I dropped back. In all honesty and openness I was considering how hard to ram her, and ifI should try to break her hip. I wouldn’t really but at times the visual is so wonderful. Imagination can be a great equalizer. He replied with anger, “She’s not a burden. If anything I am a burden to her. I don’t always pick up after myself, I sometimes expect her to do things she can’t and she does this with grace. She’s not a thing. That’s my wife.” He likes to call me his wife and I really do like it too. “My wife is a real lady, unlike you. She deals with people like you every day and she hasn’t killed any of them yet but she’d be within her rights.” Sometimes I want to and I usually share this with him, to let off the steam. “Another thing, if she’s a thing so are you! You have the privileged of a working body, it isn’t a right. You can be in a wheelchair like that.” Snapping his fingers he then sped up. I zipped past her, and rode beside him with great pride.

We talk about in this house often. There are no children to educate, it is merely something we both see. He has grown, as I have. In fact, he often tries to subvert is priviledge where he can. When he sees someone no matter who they are, having a bad day, he allows them in front of us in line (barring so low energy that this is a danger to my health). He does this to try and brighten their day and does this regardless of gratitude. Most of the time there is a grunt of anger or acknowledgment and that is it. He doesn’t stop. I note most often he does this for women, children, and persons who are most often ignored, allowing the men to wait. I am not sure if this is an expression of privilege but it is also the sort of person I would leave waiting, so if it is it is one we share. He is a joy to watch in the world. I often feel a separateness from most people but not with him.

How many white men who are so privileged to be in their 30s and still have a credit card from their parents usually see their privilege? How many white men usually can see it? In my experience it is the able bodied white man who fears this awareness above all. I know, too, that a requirement for being with the man I love, is this awareness.

I don’t talk about this often, but, some of the exploitation of the disabled that we see includes the cost of being disabled. It is very expensive, especially when the insurance companies don’t want to cover the cost of a wheelchair until you cannot leave your house, and then you still may not qualify for the one you actually need. if you need a bathchair, it is almost impossible to get a prescription for it, where we live. The cost increases as the economy makes money tighter.

What is my fiance doing to try and bring equality to the playing field? He is using his skills with repairing wheelchairs (he has repaired mine when the manufacturer failed) to try and help. He charges cost of parts, because we have to in order to eat, and a loaf of a specific gluten free bread or two dollars per hour, which has so far been used to buy a single loaf of gluten free bread. This fee is even negotiable. It is an expression of privilege that he CAN negotiate yet, it is also something that he wants to do to help people who may “lose their legs” and not be able to get their wheelchair repaired. I live with a man who knows his privilege. Yes, he is still learning about it but, the fact that he is willing to take that journey is by itself a fantastic thing that is the truest show of love he can offer me.

For more reading about privilege, I recommend checking out two places out of the thousands that you could check first. Start with a peak at http://www.womanist-musings.com/ followed up by http://thewhatifgirl.wordpress.com/. Renne, the proprietor of Womanist Musings is a wonderful writer, who has a life long experience with privilege. I find her writing more direct, and often much more clear about what privilege is. She also often reports on news you will not find elsewhere. The What if Girl has recently begun to discover her privilege and is exploring that. On top of this, she is also a fun read. I enjoy both of their blogs daily. You can find further resources at their sites, if you do not enjoy their writing specifically.

The Chronic Life Style

When you live with one or two or even more chronic illnesses your life changes. You lose something. Life becomes medicalized. You are removed from society, even if society doesn’t see it. Some conditions are blatantly obvious, but others may be hidden by clothing, misinformation, or even great efforts by the patient. You become a patient. Likely you also lose patience with the practice of medicine. Depending on the rarity of your disease or diseases you rapidly eschew laymen’s terms, having to research so that you can teach your doctor about the latest treatments.

It may feel like you should give up on doctors, but you may need medicine in order to have any sort of quality of life. Painful procedures including biopsies may become a regular requirement for treatment. You will have a team of doctors, none of whom communicate with one another. The coordination of this team depends on you. Most doctors will try treatments that do not corelate, and many will eventually give up on you. They want to treat you with a cookie cutter treatment, though for most rare conditions these do not exist because the pharmacutical company cannot make enough money and doesn’t really care if you are in pain.

You spend most of your life in a waiting room, and once you have a doctor in a room with you there is often a fight to get them to listen to you. Eventually, you learn how to make them listen, though this comes with practice. You are known by your first name by a pharmacist if they care. You learn to count your painmeds at the counter if they don’t. Sometimes they pretend to care just to steal your medicine.

Your doctors all want you to take dozens of pills, and often put you at risk for an overdose if you do not know why you are taking other things or their side effects. This burden can be very heavy if the pain is effecting your cognitive function. Some doctors will ignore what you want, they will ignore your chart and may prescribe drugs that you are allergic to. They then get offended when you point out that the medication will harm you. You don’t matter to these doctors and they are often specialists. You learn soon too, that you want a doctor freshly out of med school, because they are open minded and are often the ones who remember the names of rare diseases, but you want the experience of a doctor who has been at this for years.

There is no option for both, you can either have inexperience and passion or the doctor who has been dulled by years in the system. If you go to a hospital with even one medical student you will be shown off like a side show freak, because you are rare and fascinating. They will prod you, even if your condition has nothing to do with your visit. If you have an ear ache, they will still want you to flex your joints or to poke your skin to see it’s odd reactions. They all want to interview you or treat you so that they can write a paper on your condition. None of them keep in mind the humiliation that some of their questions can cause. Some doctors do not ask permission before telling these students about you, violating your HIPPA rights.

At other hospitals the internists may be in the same position as medical students, though they are much rarer. Often the internists will arrive and will ask permission. The curiosity still gleams in their eyes but they are not going to ask the questions with as much bluntness, a sign of mental maturation. Still, even if you are a small child, you forget to have a childhood. Doctor’s don’t really seem to understand that you lose your personal life.

The condition may have treatments, but many of them might be surgical. You could have a few conditions that cancel out the treatment options of others. The horrible sensation of turning into a grotesque monster may hit you. At this point, or even before, many with Chronic conditions turn to thoughts of suicide. Some even commit suicide, abandoning their families and lives. Some choose this route because they were abandoned instead. All Chronic Illnesses come with a side risk of severe and Chronic depression.

You might start laughing at every new diagnosis. You might hear the words “rare” or “genetic” and burst into giggles. They aren’t sounds of joy but it is really a mask for your horror. Each diagnosis has the same grief process. Sometimes you may be able to skip denial but you can never skip over the tears that you cry when you are alone. Even when you have a support system, they can’t always help you to feel better.

As your condition progresses you forget to do things such as buying groceries, or you have to choose between the medication that is vital to you and your pain medication. Many people with chronic conditions are looked down on if they need a handicapped space to make it through their shopping. Some careen through the store in a rush trying to get everything done before the pain overwhelms them, or the fatigue. Others use a motor cart provided by the store, praying that some little old lady doesn’t see them. They might feel guilt the first few times, but the ability to buy groceries with diminished pain is such a huge relief that they continue to use the carts.

At this point some continue to work, though others may lose their jobs. Not only are most people with Chronic conditions, even those which are supposedly pain free, fighting depression but the treatments may cost them their ability to work. If, as with Hidradenitis Supprativa, there is no treatment beyond surgery the patient will likely wait until the condition has debilitated them completely depriving them of their livelihoods. Some of these conditions are listed in the government’s database of conditions which need expeditious approval for a Disability claim.

Due to the listing in the Disability Database, the patient may run across a person who desires their disease or at least the diagnosis. This can be in the waiting room of the doctor, in line at the Social Security Administration Office, and even online, when seeking information and hope. This can often prevent a patient from seeing this doctor again. The patient might notify their doctor or the receptionist about the conversation. Instead they likely are too ashamed by what they have heard. Usually the person who has stated they desire this horrible condition believes it is truly painless, and considers it the easy way out. They are unaware of the detrimnetal effect that their words might have.

The patient with disability still faces the cyclic visitations to a doctor that the patient who has retained work or has made the choice to try and deny the need for Disability Benefits does. No chronic patient is exempt, though there may be enough relief from their condition to give them the sense of remission. Sadly due to the Chronic nature of any Chronic condition, there is no truth to this and they face the risk of a deepening depression or the onset of depression depending on their personality.

It is recommended by most physicians that patients seek therapy, although the psychiatric community eschews supporting most pain patients, preferring to tell them that their condition is in their head. The patient likely has spent years fighting for a diagnosis and will often have trouble with the notion of seeing a therapist again due to the traumatic treatment recieved before. This is not universal, though it is more common than a happy history with a therapist. This does not mean that therapy is not a good choice, as the state of mind can effect the reception of treatment by a medical physician.

Many patients will seek a support group before seeking out a therapist. With the advent of the Internet there has been an upsurge in email groups. Some patients may struggle with finding a group where they “mesh”. This struggle can be due to race, religion, or even prejudice faced against certain conditions. The rampant discrimination with in the chronic illness community can at times push people back into the mental distress mentioned previously. Many support groups try to modify the twelve step system or insist on a certain religious belief. Some members of support groups may be religious centric, focusing on prayer. Not every chronic patient wants to pray constantly. Many have had crisis of religion and are also seeking out their beliefs. This means that the religious patients who have turned to god may agitate their mental stress further.

This does not mean that any of these groups should disband, it merely means that a further support structure must be created and maintained by the patient. The patient has at this point forgotten that they can be more than a last name in a waiting room, or a first name if their last name is moderately difficult to pronounce. The patient may have had multiple personal crisis, and many years may have passed. Each patient progresses through various points in this article, and perhaps all of them. Some may be exceedingly lucky and find the perfect doctor, therapist, and have the perfect family who supports them unconditionally. These patients are rare. They also live with Unicorns.

Depending on the condition and the level of gore that the patient faces romantic interludes might be impinged. It may become difficult to hold their children, or to touch their pets. Fear may also be an issue with the patient’s spouse. Sadly, many chronic pain patients face marital crisis though a significant number of these crisis actually strengthen the relationships. Chronic Illness does not preclude the patient from desiring romance, love, or affection despite the potential for an increased level of anger as a side effect for the pain. The patient might begin to display outbursts of rage, instead of depression. They may also seem to mirror the bipolar patient (if this is not their chronic condition) with Mood Swings.

Some of these emotional reactions are the natural response to the brain altering it’s function to try and work around chronic pain. Others may be a response or side effect to treatment. Some medications excaserbate depression, others may mask the symptoms but only for short periods of time. The end of the masking period will be followed by a worsening of the condition.

With patients who have only surgery as an option there is the risk of being scammed by snake oil salesmen, untrained herbalists, and finks. A patient must research every medication, doctor, and treatment. It has become the patient who knows more than the doctor.

In order to return to being a person instead of the patient, a patient may tell their doctor to sod off. This is otherwise known as firing the incompetent buffoon. This is not always effective, as the medicalization of their humanity may have progressed rapidly and with great depth. The patient has found that resistance is futile. It appears that the Chronic Life Style is much like that of the Borg, as the patient has lost personal identity with in their medical file, beyond DNA evidence. The patient has discovered the medical hive mind, and thus their own knowledge has given them the ability to connect to it.

Published By Dr. Sarc A. Sim in the American Muddicle Association Joynal.

Author’s Note:

This was my attempt to try and vent. I spent last night trying to find out if I needed surgery for a very painful abscess that stayed hidden in my flesh for a good while. The cavernous hole was larger than a baseball, and showed up only as a small spot. The current treatment prescribed was oral antibiotics, which I stopped this morning. They made my stomach hurt and effected my reactions to the sun too much to continue.

The incompetent dermatologist I wrote about before prescribed this and a topical antibiotic that I used last night. I am now being forced to choose between improvement in the skin itself with the sensation of being burned alive or a faster progression of this illness that has no real treatment besides surgery and skin grafts. I haven’t decided yet. I am not sure I can handle that much pain.

I also am trying to get over the feeling of being alone. I wrote before about my rejection of mainstream religion, and all of the HS groups I could find last night seemed to talk about how prayer is the only treatment. This left me feeling as if I should just go to sleep and never wake up. This is a step away from suicidal thoughts for me, but is very close. The urge to give up is universal, with any challenge.

The final nail in my emotional coffin was seeing pictures of the treatment for HS. My skin is unable to hold a stitch, which means that where someone else could have the skin literally cut out completely and grafted over I could not. I did determine, as my doctor never knows and I have yet to find a Dermatologist willing to treat me more than once that I likely do not need surgery as long as I drain the abscess hourly. I am doing this and the wound is already shrunk down to the size of a golf ball.

I know I have support here, and someone else who is reading this probably found out they aren’t alone. I am considering doing something that feels drastic. I am considering building a website to host an email support group, a forum to discuss medical things, and a place to discuss non medical things. This would be a place to congregate. There would be a selection for those with the need to talk about their religious choices, but it would be seperate from the main support group as those persons are more likely to find a support group that fits them. I hope that it is clear that I am not judging anyone based on their religious choices with this, yet I want to make a place where you do not have to be religious, of the same religion, or can be an athiest without being judged.

I dislike reading about how once someone started praying, eating parsley, and did penance they realized they are marked as a sinner and that is the end cause. Yes, this is an extreme form of self belief, yet with the more untreatable conditions, of which I have many, that this form of extremism is more prevalent. I believe that some persons who happen to believe in the more widely accepted religions just as the less widely accepted religions may go to extremes but the main groups do not.

I feel that this all needed explanation as some people may be offended by my words, and that is the last thing I want. However, I needed to vent my emotions in order to subvert the depression that is trying to take over my mind.

If you would be willing to help create a system as described, please either use the contact form and drop me a line or post in the comments section. I cannot do it alone, and I do not have enough time to make this a reality at this time. This of course is logical as any group needs more than one person. I am looking at the Yahoo Groups System, as well as some of the free services for a website.

Personal Space

Before I set into writing the latest post, which proves of all things I am still alive and kicking I have a few updates. First, the biopsy came back, and I do not have cancer. Second, I just painted seven paintings in five days. My hands are sore. Why would I paint seven paintings in a week? One was for fun, six were for a contest. I really want to win, but, only time will tell if I actually do. I am certain a few of you will want to see these pictures. The contest was run by Overground EIC, and as I cannot draw yet, I used their line art. The seventh picture was drawn by a local comic book artist named Paul Ziomek. He’s a really nice guy too. So, here is a link to my gallery on DeviantArt and just in case you want to support artists who are local (to me) here is a link to 7000BC, a local comic book group. They have some really cool stories.

I am actually hoping to start a weekly web comic with someone, so if you know any artists who want to audition, let me know. I will be hosting a contest soon. I already have a few scripts, and it doesn’t take too much time for me to write. In fact, I might even update the blog more often if I do that.

Now, here is the actual blog post for today:

Personal Space:

The issue of Personal Space comes up frequently when we are children. We are taught boundaries, we are taught that we cannot just touch strangers. I was taught this at least, and reminded often that my own space was worthless, but I had best not encroach on anyone else’s territory.

As an adult this was the norm until I started using assistive devices. It was then that I learned another facet of ableism included touching these devices, leaning on them, and even hitting them. Would you ever touch a person’s purse? The answer is usually not without permission. Why is it alright then, for people to smack my chair, try and take the key, or even tell me just how cute it is that I use a wheelchair?

You are probably confused by their actions as much as I am, and you also probably experience versions of this as well. I am not sure why it has become the norm for people to tell me that my wheelchair is cute. I understand the perspective of another person who is shopping for a chair deciding mine is really cool and asking me questions, that is perfectly reasonable, and is something I have done myself. I understand a child needing to ask me what I am driving a miniature care for. I do not understand walking up to someone and smacking the top of their chair and telling them how cute it is that they have a sunshade on their wheelchair.

This happened at a Walgreen’s that is just a block away from my house. My Person and I were there, getting some snacks and were going to rent movies after. I was in glee as I had found lotion I could use with minimal reaction, my arms stayed red for only an hour and eyeliner that I was not allergic to, could use properly, and is hard to obtain. This Walgreen’s carries authentic Egyptian Kohl. I am so excited by this that I actually spent all of my extra money on make up. We were about to check out when the Cashier gushed at me, “Oh how cute your chair is.” I looked at her and told her, “Excuse me?” She repeated it. Then, another employee smacks my sunshade and tells me it’s cool. I decided then and there to put a stop to this.

“Do you really think it’d be alright to smack someone’s cane? Do you think I would go around telling you that your crutches are cute if you broke your leg or your cast is cute? Don’t patronize me, don’t touch me or my assistive devices. I happen to think it’s a shame I no longer get to walk through your store. I happen to think it’s a shame you think that acting like an idiot is going to make me want to shop here. If you touch my chair again I will report you to the management, and if you,” Gesturing to the other person, “Speak to me like a child again, I will also report you to the management. This is not how you treat a customer, or any other human. I am sure you think less of me for saying this, but I think much less of you for behaving in an inappropriate manner.” The woman looked as if she would cry, and the young man who had thwapped my chair had backed up considerably. It took a lot of will power to not curse at them. I wanted to. Instead the woman said, “But it really is cute.”

My person knows I dislike advocating. I don’t know anyone who really enjoys it or wants to spend all their time arguing with people about their own right to exist, but, he has accepted that I will and must. He also has accepted that at times, he must as well. He spoke up then, “Don’t patronize her. Trust me, you don’t want to continue down this path. It’s not a threat, it’s just a warning from a fellow Walgreens Employee, that she knows her rights, and you are infringing on them.” He used to work for Walgreen’s, and as a result I know that the staff are taught to be courteous. I am certain that these two people have never really had to interact with a disabled person.

I am not proud of having to put them in their place or making sure that they feel a little bit less than but, I am still reeling with confusion at their actions. It has been almost a week but I cannot figure it out. This isn’t the first time people have told me just how adorable it is that I can shop, or function in society. Each time I have explained, to the best of my ability and as calmly as I can. I have also learned that it is alright to show anger. Any ‘normal’ or ‘regular’ or able bodied person would be angry if I told them how cute their flaws were, or how cute it was that they were absolutely stupid. I am learning that I have the right to anger.

I will go back to this Walgreen’s. It is a very nice store, and they actually measure their aisle displays for accessibility. I caught them in the act, the manager was correcting an employee on the placement of a standee that held some make up, “You can’t put this here. People will be unable to pass.” The employee walked around it, “I can get past it just fine.” The manager then said, “What about people who can’t walk or use a walker? How about this, if you don’t move it, using this measuring tape for a 28 inch radius, you lose your job. I don’t want anyone to sue me over the ADA or anything like that.” He added something else too, “Oh and what about customer service? It’s gotta be a pain in the (censored) to have to ask for help to reach a bottle of lotion.”

I hadn’t had to advocate to them, but I was watching. I was paying attention. I know that the management at this Walgreens cares. If when I return this patronization happens again, I will bring them into it. I will also offer to train their employees. The only reason I did not have to fight them more was that I had left Sprite the Service Cat at home. She wasn’t feeling well and I wanted to go out.

It was still a lovely afternoon, but, it left me chewing over the concequences of their actions and my reactions. I am proud to state that I did not punch the man who touched my chair. I almost did, but I managed to catch my impulse in time, and used my words instead. I have been having a lot of trigger issues with men and my chair lately. They come up behind me and I want to run them down to make them go away. I haven’t given in yet, but, when the strange males who trigger me then touch my chair, all bets are off!

I haven’t much else to say on this matter, beyond, advocate for your personal space. I didn’t at first. When I used the walker and my abusive roommates would pile heavy objects on it so that they didn’t have to carry them, or when they kept dumping things into my chair so I couldn’t use it when it was brand new, I at first kept my mouth shut. I was so used to staying silent so that they wouldn’t punish me or decide to expose me to even more allergens. At first I let people do things like this out of the house too, because I was afraid. I feel less fear when I advocate. I also worry at times that I am being too sharp, too harsh. There have to be times when I am the gentle advocate, and there are. I worry over it even when I am putting in extra effort to not hurt people’s feelings despite their refusal to let me have my basic human rights. It sounds preposterous when I say it or write it, but it feels right to try for extra kindness.

I am also learning that my Autism may factor into my need to not be touched. I have always been extremely sensitive to touch and texture. I like to control what things feel like around me. I once could not adopt a very adorable and well behaved puppy because his fur felt too stiff. I found him a good home but, I couldn’t cope with the texture. Sometimes texture can even cause nightmares. This adds to my unwillingness to let strangers touch me. I don’t hug people often. I do make sure to touch my Person, but sometimes it takes massive amounts of effort. He is understanding when it comes to my reticence, but I also want to make sure he has nothing that he wants or needs for.

What about you? When you advocate does it help your anxiety level or make it worse? Do people infringe on your personal space? This goes for those with sight issues or hearing issues, do people at times touch you just to try and make you function the way they want? What are your reactions? If you are an Autistic, do you also have touch issues? What forms of contact ableism are you familiar with?

I live!

I hope you all can forgive my silence. Here is a quick rundown of why my blogging may become a bit more sporadic. I will try to not be so lack luster in my posting, and I have stories to tell!

1. I am starting a public speaking business. I will try to travel and blog, though until I get a laptop that might not happen. I will try to use the scheduler on WordPress, if I can figure out how to make it actually post.

2. As an ordained interfaith minister at times I perform weddings. I like to assist with the planning, networking resources, and it is another time consuming affair, also at times with travel involved. I am currently in the process of helping plan a huge wedding with in three months.

3. I might have cancer. This year I am getting a double cancer scare. I have posted before about the annual cancer scare. This time my doctors think I have both skin cancer and uterine cancer. I don’t think I have either but we are doing biopsies (which left me incapacitated for three days) and tests just to be safe.

4. I am trying to keep my commitments as well. I am helping to start a new Toastmasters Club at both the local University and one at the other end of town. I am also going to be active in my regular two clubs.

This is all between writing my novel, on the blog, working on my art and I will also be crafting things to sell at craft shows and as special commissions. A lot of this occurs around wedding time. (Feel free to book me as a minister, I can legally marry you in most states and as an interfaith minister am able to work with many faiths. I also perform commitment ceremonies for those who cannot legally marry their life partners in most of the US at this time.)

I will continue my activism as well. It never ends, and although I am tired when writing this, I still need to wash my face to remove the eyeliner Day of Silence writing from the protest, I am exhausted but content. I will try to write tomorrow, and due to the incliment weather might just have more time.

It is spring and SNOWING!

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.

30 Seconds

Tick, tick, tick. That is the sound of the watch counting down on your life. A disaster is about to hit. You are going to have to choose between living or dying. Tick, tick, tick. You have thirty seconds.

Thirty seconds seems so short when you look at the length of the average human life. People live past 100 years of age sometimes. To them thirty seconds might just be the blink of an eye. Thirty seconds can also feel like an eternity. For me, life has changed in thirty second bursts. I am given two choices and neither is pleasant.

Tick, tick, tick, The choice between life or three deaths came. I broke my back in a car accident. I could have made a choice to not risk my back, but the choice was between my life with health intact or at least my life intact or dying along with two children. Tick tick tick. The clock slowed down. It felt like an eternity. I know it was sudden. The impact that jarred us forward, sending our bodies into a free fall. The chair that should have kept us from flying free loose, wobbling and stripping up. the bolts connecting it to the van coming free. The cries of fear were drawn out. I had time to shift down, bracing for the impact.

The thirty seconds ran out and I felt as if I had died. The van seat pressed into me. I pressed back. I felt crunching inside of me. My hips popped out of their sockets and then everything went too quickly. I couldn’t think clearly through the pain to advocate for my needs. I just knew I was hurt. The boys were fine. The basketball pole we had hit was up inside of the van, the driver was afraid and sped away. No one else was injured.

This was the first time that the clock stopped like this and I managed to make a difference. Many times in my life the clock slowed, I had more than thirty seconds to feel a fall, or to choose. Tick, tick, tick. It was just thirty seconds but two brilliant young men are able to change the world. They will never know what I sacrificed. There was no ambulence, I had to try and get to the ER alone. My legs refused to move. I made them. I made it to the bus stop and waited. The clock was ticking, but now it was silent. It was seducing me, allowing me to be lulled into the dazed sensations of pain. It took me an entire day to make it to the Emergency Room.

The clock slowed again, I waited for two more days to be treated. I was forbidden to eat or drink, because surely the doctors would want to treat me and if I ate or drank I would die if I needed surgery. I had no money for food anyway. I just sat, watching the click on the wall. The minute hand creeping forward slowly. They missed the broken bones in my back. I was told nothing was wrong and to go on with my life. No pain medicine, just the assurance that in a few days I would be right as rain.

It was a flood. I waited a few days then went to the dance troupe I was a member of. I looked forward to moving, because I hurt so much. Movement would stretch my muscles and I would feel better. I raised my hands up and started to move with the others to the music. The clock slowed again. My legs went away and I collapsed. The pain grew, my head burned with it and I drifted into a daze. They wanted to call an ambulence. I refused it. The doctors had told me I was fine. I had to deal with this alone. I hadn’t learned to fire them yet. I had not learned what it meant when time slowed down and the second hand sounded like thunder. I made the wrong choice this time. My spine could’ve been saved. I should have gone to the ER, to see if they could find out why i was still in pain.

Time sped up, too fast this time. I lost my job as a dancer. Months passed in a single tick of the clock. They did not want me to go but I was weaker and weaker. My job as a teacher was lost. My job as a retail worker faded out too. I was facing homelessness. I couldn’t make a good impression at the job interviews. I kept getting sick from pain and fainting. No one hired me. My savings drained out. A flood of green flowing away. Tick. Tick. Tick.

My shelter was gone. I had to choose. I could live with my grandmother, if I ate food that would make me sick. She didn’t understand allergies enough to care. I could obey her every whim. I could live with a woman who had no love for anyone. I could be on the street in December with snow on the ground. I went to live with my grandmother. That was worse than snow. Grandma doesn’t like people. She likes to control them. Grandma is like my father without a penis to rape me with.

It lasted until Spring. Then she locked me out for seeking peace. She locked me out again when I went to a bar. I wanted to be away from her. I danced with someone. I drank a soda. I came back to where I should be sleeping to torrents of abuse, accusations of theft, being forbidden to continue to work at a video store. I was devalued. The clock kept ticking, and my spirit faded out further. Tick. Tick. Tick. I wished I had died.

I chose to go back to the city, to the streets. I chose wrong again. There was no right choice. That first night I laid on the cold floor, shivering and trying to sleep. My pain saved me. My paranoia saved me. I had taken a fork from dinner to bed with me. They count the knives at that shelter. The men and women all sleep on the floor. No matter if you are disabled, no matter if you are all alone. You are sheep together for the slaughter of someone else’s profit at your homelessness. I thought it was a nightmare at first, when I felt hands on me. I opened my eyes. I remember noting he had no teeth. The fork I had stolen was in my hand. I stabbed him in the chest with it. I pierced his flesh, I was quiet. He wasn’t. He scurried away, screaming and trying to escape me. I kicked hard. My legs held for a moment. Long enough to bruise his testicles. He had wanted to rape me. I laid back and listened to him explain his screams. He’d rolled onto the fork, he said, during a nightmare.

I couldn’t move in the morning. My legs wouldn’t move. Two men hefted me up and set me at a table. They gave me knowing looks. They brought me food for two days, but, then I had to try finding a job again. I walked the city. My feet started to swell, my clothing too. All of the toxic food was making my body gain weight. My stumbling had me often called a drunk. I hid in the library. It was April. Easter was coming. Two days before Easter it snowed. I waited in the city, no one allowed to use the shelter in the day. Not even the blind and broken woman who could barely handle the chill. We stood for eight hours in the snow. I gave up my spot in the warmth to a woman and her two children.

I heard the ticking clock again. It was so hard to move. A married couple carried me into the bus. The driver had wanted to leave us out to die. Many would die anyway. I almost did. He didn’t want to lose his job. It took more than thirty seconds to get me on the bus. It felt like an eternity. When in the light of the shelter, someone screamed. My face was black. Not the black that the persons of color might be, not a gleaming and rich ebony. The blackness of dead tissue. My entire body was black. No ambulence. The bus driver had to drive me out. The same married couple came to make sure I would be alright.

The doctor was afraid. My Blood pressure was 66/80. I should have been dead or in a coma. I made bad jokes. I laughed to stay alive. I hurt. The pain in my back was worse. I could feel my legs, my face. The tingle of damaged nerves. All they could do was thaw me out, send me back. I had no shoes now. I could not walk. I went to another shelter. My anger was too potent for them. I refused to die. The other shelter had a time limit. I had until the Fourth of July to get a job and move out. I went back to teaching music, another community center.

My pain was bad, growing worse. It was a mile to the center from the nearest bus stop. A mile because no driver would enter the “War Zone.” Gangs. Drugs. Pain. I ignored my needs. I lasted two months. I walked out after my boss refused to tell a client he could not shove his gun in my face. I yelled at him for it, turned out he lead the gang. He didn’t kill me. He was too shocked that the little white woman would tell him off. I was trapped by that act with two abusers.

Years passed. I could do less and less. The clock kept winding down. It stopped. Finally the diagnosis came. “When did you break your back?” That thirty seconds lasted for two years. I could barel walk. My pride at being able to walk left me to push myself. The doctor wanted me on antidepressants. I rejected that idea. Without them I could not have pain meds, she said. I did not want pain medicine. I kept telling myself the pain meant I was alive. I wasn’t living. I was just flesh in space. I couldn’t figure out how to wind the clock.

Two years turned into four. I finally gave in and started accepting that pain needed to be deadened. I accepted it would never go away. Four years turned into six. I began to fight for my freedom. I fought for a wheelchair, for the use of a service animal and I fought for my person. Six years turned into Eight. Today is the anniversary of my nearly freezing to death almost eight years ago. This is close to the speech I am giving later.

I am only twenty four. The damage to my body over my life time has come in bursts that lasted just thirty seconds. Each one has taken me years to even begin to treat and that is just unacceptable. In thirty seconds you can run a Super Bowl Commercial. In Thirty Seconds you can make a difference. If I took back all of those thirty second bursts. I could have another life time. I wouldn’t change my choice on that fateful day, when I had to choose Disability or Death. I just wish I had known that in thirty seconds I would join a minority. Being unaware of disabiling conditions I already had, I wasn’t an actual member yet.

It only takes Thirty Seconds to become disabled. Don’t forget that. Thirty seconds can cost you everything you think you hold dear. Thirty seconds can be the difference between dancing in a movie or dying on the streets. Just thirty seconds.

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.

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