Why Bullying isn’t Healthy for ANYONE, a post intended for Karen Kabaki Sisto (Trigger warning for everyone else also I cussed a bit))

I know I have not posted in some time but the surgery I had and slew of failgivers and bad agency issues took my writing spoons for survival. I am just getting settled with my new carer from a new agency and this article has come out that I cannot even finish. This post like most of what I write has a trigger warning for a reason.  Here is the article by the person I am chewing out below.

Dear Karen-

I am calling you out. The initial title of this post? You better run bitch. Why? The internet is coming for you. You see you did something stupid. You wrote an article that promotes bullying. The idea that bullying is acceptable for anyone is already disproven. Children die daily because they cannot endure bullying and the pain it is caused. These are not just autistic children but children across the human spectrum, some of whom fall into the category of normal. People of all ages are bullied for skin color, eye color, hair color, weight, ability, and so many things I cannot list it all. Bullying is always arbitrary and boils down to psychological trauma that sometimes never heals. It shatters confidence.

The article, as far as I could read sounded like my mother. I deserved to be bullied because it would make me stronger. I was weak because I couldn’t take the pain. That is bullshit. I am not weak. Medically, I admit I am, but mentally I have dealt with things people should never be able to imagine coping with, and I am still alive. I have spent my life aware of death itself because of my body and more so my family. My family of monsters. I am angry this was written because there will be people who do not think before they act, and will traumatize already fragile people. Autistics get bullied all the time, this simply removes potential resources. Of course this is also from the people who created the ABA system of abuse. They call it therapy but I mean mother fucking abuse.

In the end I cannot stand by and be silent on this. Bullying caused me to cut myself. With my medical conditions this could be fatal. I thought between my parents and the other children I deserved pain. I thought that if I cut myself maybe they would stop. If I hurt just a little more I would be purified by that pain and worthy. Some of this is through the lense of absurd religion but not all of it is. I am crying as I write this because I know out there people are dying a slow death from bullying and this article will cost them dearly. I am crying because I cannot protect them if I am silent. So I am roaring.

Here are ten effects of bullying regardless of autism.

1. PTSD- Post Traumatic stress is not a choice there is no pushing through it and it can forever undermine self confidence. Avoiding triggers is the treatment, and like avoiding allergens to not die or spontaneously combust into hives and anaphalaxis this is not really effective because its impossible. Anything around at the trauma from a scent, lighting, touch, voice, words, or even clothing can become a trigger and you will not know until you find out the hard way.

2. Lowered Confidence- Confident people succeed. We do. I had to rebuild myself and am lucky I could but not everyone is able to do that with or without help.

3. Depression- This too can feed lowered confidence and can get you bullied. Don’t feel u p to anything because you hurt so much and are sad? People WILL bully you for that. Depression is hard to live with and bullying is a cause. Depression is also painful and often causes people to kill themselves.

4. Lower grades- You do notlearn when afraid, you learn less when stressed. There must be a safe place for people to go to learn. Living without one creates a priority of survival not education. You can’t focus on algebra because you are focused on not sitting wrongly, or the physical threats that bullying can entail. Sometimes people even drop out.

5. Social Isolation- Bullying makes it harder to make friends. Cliques aka human herds are social. While not every autistic is social many are, and this deprives them of the opportunity to make friends, to learn because a bully takes out your friends too. No one wants to endanger themselves for a stranger. Sometimes not for people they know. Bullies are dangerous, predators even.

6. Health issues- Bullied for weight? Well you may just end up anorexic. Bullied with physical violence? You could end up with serious physical trauma that disables you. It can also be BOTH THINGS. Bullying can even cause sexual dysfunction, increase the trauma of having puberty, and living in stress is also just bad for you. Hypertension, heart issues, bad diet, inability to sleep just to name a few.

7. Violent Retaliation- I have written about it before, but I nearly blew up my high school to kill everyone so allthe pain stopped. I also realized this was not healthy and stopped myself. Not everyone has that ability and sometimes these victims make more victims in a violence chain reaction. School shootings, the shooters are often bullied. This isn’t once or twice. Its not “Just Columbine”. Its also not always so clear cut. I became so afraid of bullies and had no safe home and ended up hurting the only friend I made before I was an adult because I didn’t have the ability to think past the fear and she touched my food. Yes I was also abused at home but a lot of bullied kids are, not just the bullies and sometimes those bullies have healthy home lives despite what the Film Industry/TV Industry tropes are.

8. Alchohol and Drug Abuse- Oddly bullies tend to be more prone to drug and alchohol abuse in some studies than their victims but compared to non bullies/bullied people both parties are much more likely to drink. Bullying is not just bad for the victim but creates bad mental hygiene for a life time.

9. Criminal Records- I can vote because my mistake of assaulting my friend came at the right age but not everyone is so lucky to get help and both violent responders to bullying and bullies still have to live with the consequences of their actions and reactions for life. I can’t forget, even with two brain injuries, the realization that I nearly killed my friend. I have to live with that feeling forever. Any time I think of her, it is there. A reformed bully joins me there but often they continue to escalate into other criminal behaviors, as bullying is another word for assault in MANY areas.

10. Missed Opportunities- Bullies and their victims both miss opportunities. Later in life the victim may be successful, needing to hire someone. The bully applies and… I would not hire them if I was in HR. This applies to non work things too. I have forgone games and social outings because an abuser/bully was there. Sometimes I tell the bully/abuser to fuck off, but I am an adult and aware of my power. I am the rare person who despite all of the crap they endured is able to do so. Its not common.

I am I think the sort of person who inspired this false and illogical article. I am strong. I am tough. I kick asses and take names. I push myself and sometimes I can’t get past the bullying. It still hurts me. That isn’t stronger. Stronger would be less of that. If I had not been bullied at school I would have had a refuge. Not having that? I tried to kill myself a few times and failed. I didn’t get found or helped, I just didn’t do it right. I am glad of that but telling me that I am stronger because of this is an insult to my intelligence, common sense, and every autist on the planet. I understand the writer wants to justify their being a bully, but I hope ANYONE with children near them runs, because this isn’t a red flag. This is a sign that reads: I am an abuser. I will hurt you. I will hurt the ones you love. I will forever scar the minds of innocents. I am also not qualified for anything. Not even McDonalds.

No one should be bullied. Autistic children are much more vulnerable, as we still cannot even be guaranteed education, access or care. We are discriminated against at all levels. I have been denied access to medications because of autism, endangering my life. I have been denied access to necessary law enforcement. Autistics are already trained to obey everyone, by ABA which the author supports. We can ill afford more of the same. It is much arder to stand up and say no. A lot of the reason Autistics struggle with these things swings back to being bullied. Bullying is abuse. Calling abuse healthy is assinine. A lot of this post was edited to remove the word fuck and many other unfriendly epithets to the originator of that piece of shit article. I am still cursing in it because frankly, that fucking piece of trash article deserves to be called exactly what it is.

Karen Kabaki Sisto M.S. CCC-SLP I hope you read this. I hope you understand that this paragraph was originally cursing and I hope you learn something. Bullying doesn’t give any perks. Putting the burden of the victim on making it about team work, autism awareness every month, claiming we learn verbal skills when we are terrified of being harmed, grow stronger, gain friends, and a better well being shows me you have NOT looked at the effects of bullying at all and are either high or stupid. Self Esteem is often low in autistic children because of bullying. Please, quit your job. This is not said lightly but quit your job. You don’t belong near vulnerable people.

I will be blogging extensively about your article and I hope you get this on your “other folder.” I also hope you read my article. As an autistic adult I am more qualified than you are to deal with autism and you have proven to be the least qualified hack  since Jenny McCarthy. For your education here is a link from me to you, about the risks associated with bullying. I didn’t consult it, because I know them by living them.

Advertisements

911 Fail (Ableism Warning)

Yesterday because of a mistake in the office where my caregiver gets paid, I was told I had no carer.I have a bill I must pay on the first or my phone is turned off. There is no flexibility with in the system for me there, and so I grabbed money from my change jar and went to pay my bill. The harrowing five mile trip (plus whatever I do in stores) drains my chair battery, my battery, and can be scary enough when it comes to crossing the streets but the side walk is not up to ADA standards. I’ve said over and over once a certain someone returns my video camera I am going to video it, then push for changes. I don’t trust my city to take my word for it.

Over the bumps that bruise me and put me in enough pain that I get pale and shaky I go. I paid my bill, I bought some food that was easy to eat (deli meat, a rare treat) and I picked up a few things I wanted at Walmart, and priced a few others I need but must budget for first. I got asked out, flirted with a person and then headed home. About half way on my trip there is a curb cut so dangerous that I have mentioned it to my carer before. It is unavoidable, for the other side of the street has worse curb cuts. If I hit this curb wrong I could be thrown into the street. I hadn’t until yesterday.

I managed to keep out of the street but my chair ended up stuck. I tried reversing just a touch but that sent me going back at dangerous speeds towards the street. My chair was unable to go forward or backward. I waited ten minutes, full of trying to maneuver myself back to the safe spot (you have three inches to land in or you risk dying here, not a joke). I called 911,

I am already fighting off tears, I am at a bad angle that has me wanting to vomit and I have a big bag on my knees. The 911 operator answers, I fill her in and tell her where I am (I memorized the crossings just in case) and then she asks “So can’;t  you just get up and push your chair to a safe spot?” Now, I know some people like me can walk a bit without our chairs, but no, I cannot do this. I am hanging by my antitip tires, I can feel myself falling a bit more and she wants me to merrily pop up and fix it.

“No, it’s a wheelchair.” Valid response.

“Uh… well okay I’;ll send someone.” She was annoyed. She didn’t want to bother with a wheelchair user that surely must’ve done this on purpose.

She has me on hold, and while she is trying to find someone to send (this took about thirty seconds, she did work fast but none the less ableism much?) a truck drives up, I saw this truck pass me ten minutes before, because I remembered liking the color and lines. I like cars, I remember them. Out steps a really hot guy. I mean, wow. That this was my first thought should indicate how hot he is. Mr.Tattoos says, “I’m here to help!” Swoon? Only because I am really dizzy from bad angles.

He looks at the problem and then says, “Hold on.” He LIFTS MY CHAIR (that’s not a small feat) and plants me where I need to be. He then says, and this is the part that makes me go huh what? “Hmm, this curb cut is dangerous, I hope you are almost home.” Then, “I would like to ask you out.” I got his number, and appreciated that he understood this was not the right time to set up anything. He said a part of my charm was that I wasn’t crying and was trying to save myself first.

The 911 operator fails more here, because she did wait to see if he could rescue the damsel in distress, “Well see you didn’t really need to call us. You should’ve just waited for someone to come along.” Right, with the sun setting, I want to wait to see if a stranger may stop. I am stuck outside of a business that has been closed for over a year. I am in an area where I have NEVER seen anyone stop. The reality is, this man saw a person in trouble and could identify it and stopped. It took him ten minutes to find a place to turn around. I did the right thing by calling. I even told her all of this. “It’s a shame I am going to have to make a complaint against you and will probably be suing the city.” Then I hung up. Let her wonder. Let her fret. (I did file a complaint this morning, her boss is NOT pleased at all.)

Mr.Tattoos did not fail. In fact I had an oddly ableism free day excluding 911 lady. I was treated like a person all day, instead of like I had wheels for a face. Even the cashier at Walmart this time was so awesome. She asked me how I wanted my bags arranged, and she presumed I knew exactly how to maneuver myself. No one once made me feel like I should apologize for existing.

Now there is something more. My journey wasn’t complete after all. I made it home, and decided to check the mail. This is a ritualistic thing for me, and is part of my set of complusions. I am compelled with mail, it brings me solace. Mail means everything is okay. I had mail! and then dropped my keys… a man was walking past so I asked for help. He helped me get the package out of the box, my keys and then asked me out. “Wow you have such pretty eyes.” I entered my home with three numbers, while blushing.

So not only did the 911 person fail but man three hotties to date! I am taking this as a sign on dating, it is time. Which I knew already but wow. Silver platter me much?

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.

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?

Emotional Agony

So often, I find myself belittling my emotions. This is another practice from childhood, and it can defeat me. It sets me up for failure, infects my heart with discord, and leaves me acting as an Angry Cripple. It is a challenge to fight the urge to tell myself how little my pain matters.

recently I have been displaying some of the life long bits of my soul here, many of which bear bruises and scars. This is painful. There are over 100 posts that have been written but you will never see, because they hurt too deeply. Some have been rewritten, to remove the deepest secrets, hiding them.

I realize this is not something that is unique to me, and is instead very common especially with Women who have disabilities. A disability is anything that interferes with functions of daily living, and therefore I do count mental health issues as disabilities. Not all disabilities are so severe that you alter your life and build it around them, but, that does not mean your reactions to those “minor” disabilities have any less validity.

I am writing this post, because I have heard five times in the last two days, read it twice, and tried to deny a growing anger that these words cause this lovely statement, “Just looking at you, I realize how little my pain matters.” This is crap. This sort of thinking and self devaluement leads you down the path towards self hatred. Self hatred is usually just a mask for inner pain, layered with anger and other poisons. Stop it.

I know, my body is a very good example of what you do not want to live in. My body is not your body, and although my pain is epic to me, there is someone out there who has it worse. I can name names, I know of faces, and there are people who walk, that still have it worse than I do. My pain is equal to yours, not less, not more. Equality in Pain is a concept that I learned about when I met a girl in the mental health ward. I was actually addressing the issues of my sexual abuse, and, she tried to empathize, revealing why she was there.

To me, the reason, not revealed because of confidentiality and respect of this person, is small. It is insignificant in my estimation of abuse. To her, it was earth shattering. Her world exploded. It took me a lot longer than my stay in that facility to understand the concept offered there. What we experience shapes our views. I cannot show you what I see, but I can try and paint a picture for you.

There is no reason to compare experience. Identical Twins rarely share the same outlook in life, every person is as unique as a snowflake or a butterfly. None are identical, despite outward appearance. It is rude to devalue them or yourself based on your own experience. This brings us of course to racism, ableism, and sexism.

When you say that racism does not exist, it is not truth. It is perspective. You deny someone else’s experience and that wounds you both. You might not understand their anger at your words, and they might lose respect for you. They may not understand too a lack of experience. This does not justify your denial of racism, but, the caveat is that you can learn from the responses to such statements.

Equality is in my estimation impossible. I am an idealist however, and fight for the ideal. Someday, I might just be proven wrong. I do not remember the author though I think it was Vonnegut, but I once read a science fiction story where everyone was made equal by devices that made everyone see, hear, and think at equal levels. They even ate the same food, very bland, all people were the same. This world was horrible, everyone was in pain, tormented, and unable to function.

This was normal for those characters, until one could not be contained. He was above average, so far so that the devices could not contain him. He became violent, lashing out to try and wake the people up. It did not end well. I think of this story often when I forget why people are different.

I do not want to be just like you, and you definately do not want to be made physically equal to me. I would not wish this body on anyone. I also wouldn’t trade it for yours. I couldn’t function with another body or mind, this is what I know. Your pain is pain. Your anger is valid. Your tears, your joys, all of them have as much importance as mine.

I have said this outloud to people, before. Trying to make them stop. Sometimes people devalue their pain in an attempt to pity me. I need no pity. I am a brilliant star burning in the sky, and I know it. No person needs pity. Those who pity are merely blind to the simple fact that everyone is valid, necessary, and capable of something important.

Before you protest, stating that people with cognitive disorders cannot be productive in society, let me correct you. Autism counts as a cognitive disorder, though, it makes my world absolutely brilliant and colorful. I couldn’t trade up, just down. Downs Syndrome doesn’t make a person invalid. Every person with Downs I have met experiences more joy than I can comprehend. You point out that those in vegetative states do not add anything, and, I say bunk. What they did before their brains were injured counts. Every living person has a right to fair treatment, health care, and love.

Emotional equality too, prevents the need to debase someone, to be better than they are. It merely exists, as we do. I exist. You have the right to exist. I am angry for those who cannot see it. I mourn, for this knowlege is powerfully freeing. I dance with butterflies, I sing with the birds, I exist merely as I am and can be nothing else.

You are valid. Go love yourself.

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.

Isms, Hisms and Hersms

I read a few blogs on the internet circuit, some of them deal with feminism, some deal with racism, some deal with ableism, and others deal with Fatism. Isms of all shapes, sizes, colors, and one for each of us, sometimes two. Someone was having a sale on their isms when our culture was created, tossing them out like sprinkles on a cake. I am tired of isms today.

I have a great doctor. I will recommend her to just about anyone, for in her office there are no isms, just lists of things to get done. I now have an epipen, a referral for the dozens of undiagnosed whats its, and even a new diagnosis. I also was given the option of advocating for breast cancer awareness. The point was made that with my body being as it is, I have become acutely aware of risks and am in the perfect position to teach other disabled women about breast cancer.

I have thankfully never had breast cancer or even felt a strange lump but I do self exams weekly. I know it is recommended that you do monthly examinations, yet, this is not enough for me. I have relatives who have had cancer in all of their parts. Breast, brain, uterine, ovarian, liver, lung, you name it, and it has had cancer. I also have a lot of conditions, including one that effects my skin and therefore hypervigilance is necessary. Beyond this, what has made my doctor decide I am a great advocate? Self adaptation.

My breasts weigh a lot. Not only is the tissue very dense, making them pert and perky despite their size, but, it makes it harder to find lumps once you breach the FF quadrant. I left that a long time ago. I shared with her today my methods for a successful self examination. I have to adapt to the needs of my body and this means I may lay on my side, I may hang upside down, but, I always make certain to feel not just my breasts in a circular and consistent fashion, but my armpits and down my sides a bit.

I am lucky that I have had strong women in my life. I have an aunt who has had stage four Breast Cancer for longer than I have been alive. This woman has fought, and fought and thrives. She does at times worry her family for her life, but, she has dealt with cancer with no break for over twenty five years. In my mind she is the best teacher I can have about why cancer awareness is so important. Without knowing her, I might not have decided to live during one of the bouts with suicidal thoughts that I went through as a teenager. I might not have begun to battle with myself for proper medical care.

I have a lot of diagnosis, the list grows daily, but, my isms are mine. I am a short, fat, white girl in a wheelchair. I am also blessed with very rare breasts, the sort that women have painful surgery to mirror. I have great hair, great eyes (when they see) and a brain. I am facing daily challenges with ableism, fatism, and even some fetishism. Sexism is a consistent battle. I also face the blessings of people who are better than the isms. I face the knowledge given to me by my fellow females, and now I must learn to share.

Take stock of your isms, be you male or female. Take a look at what you are given by station in life, what you have fought for, and, if you have enough to share, reach out and help someone rise above. I will post about my chances to advocate for breast health. I am even going to start getting mammograms, a need I had hoped to put off for at least ten more years, but perhaps I can come up with a way to make them less painful.

This is hardly a new idea, I am merely following in the path of others who have taught me. This is not an area I had ever expected to be asked to advocate in, but, how can I deny the request when I know that even one person may become self aware?

  • Polls

  • Ye Olde Archives of Fury

  • Top Rated

  • Top Clicks

    • None