An Informational Guide: Too Disabled For Contact Lenses? Not Likely!

I was told I was too disabled for contacts a few times in life. When I was a teen and my glasses first began to cause headaches from the weight of them, that was the verdict. The insurance however did cover, due to the heft of my prescription thinner lenses fully. As an adult they quit doing that and it became a three hundred dollar a year expense, due to the needs I have in glasses. I wrote off contacts and the nightmare stories my not so great parents told me about them had me certain that I was a contact lens away from blindness. They lied and twisted facts to make me fear something that is simply to me now. The simplicity comes with experience and adaptation.

I am not a contact lens expert but I am an expert in being disabled. Like all other people with disabilities I am a master of adaptation. It is how we survive. So when last year my ears began to bleed and the pain in my nose was so great I couldn’t bear it I mentioned it to my doctors, one of them was smart enough to figure out that ehlers danlos syndrome plus glasses as heavy as mine may be a problem. A few pokes and prods later and it was confirmed my glasses when I wear them tear my ears veeeery slowly downward and push the nasal bone up into my head. Wearing glasses became one of those terribly dangerous things.

This left one solution. Contact lenses. I am a wheelchair user with an inaccessible apartment, one arm guaranteed to function, limited guarantees of hygiene due to allergies and the sheer number of medical things that can and do go wrong in a given week. Yesterday I couldn’t use either arm and was relegated back to my glasses. I am still not in them full time but that is as I am told normal. As I said I am not an expert. Its about sixty forty, in favor of contacts now however. I spent weeks hunting for answers on how to adapt contact lenses.

1. First things first, expect it to be hard at first. Then easy. Like all things its a skill that takes practice. You will not be allowed to take your contacts home until you can show them in their office you can get them out and put them in.

2. Its okay to not do it their way entirely. What truly matters with contact lenses is the hygienic environment. Since I cannot stand before a mirror much less reach a sink in my wheelchair I began to cheat. I wash my hands very well, dry them on paper towels, then cover my hand rests and controls with more clean paper towels and put one on my chest for the inevitable dropped lens. This probably won’t work for someone using a manual chair but my point is to adapt the methods to your needs as best you can. My contact lens solution sterilizes so I also compensate by covering my hands in it before I begin, and before I go hand wash I have laid out my eye drops, my solution, my closed contact case on my previous paper towel. This means less fussing.

3. Referring to two not doing it their way. The people who will teach you how to contact lense do not often have to adapt their methods and thus may not know how. I was told to get a mirror with a lot of lighting, to use both hands (and just try because lifting my arm and dislocating it was beyond the comprehension of the very nice but not disabled contact lense woman).I did try that at first as there is a hand dance involved. One hand is to pry your eye open and the other to present the lense just so to your other eye. This of course was not possible for me. I adapted the method to my body by using my middle finger to hold the lens and not my pointer, and moving my head to the lens on my hand. I also do my best contact work in utter darkness and have not once succeeded with a mirror. Its pointless as I am nearly legally blind, I hover in that cusp of low vision that comes before it. If I cannot bend my head down to the other hand I will often use one hand and my middle finger again prying my eye open with thumb and middle finger and my pointer to insert the contact.

4. Everyone, able bodied or not, has to adapt. I quickly became aware of the silky sensation of the contacts in my eyes, and I rather find it pleasant. In my case this is in part due to being able to buffer my intensely dry eyes with a liquid barrier. I expected it to be gooey but my lenses are soft and smooth. Being sensory aware due to autism and some jacked up nerves it was easier for me to without vision find my contact lens and control it. I am the fastest to adapt to this that the contact lens specialist has seen, to date. Many people who can see and are “normal” as much as that exists struggle to differentiate the sensation of the contact lens from the solution. You will find the things that simplify contacts for you.

So now that I gave my vague tips that all boil down to, don’t be afraid to experiment a little and adapt, my method in detail is as follows:

Get up, do not put my glasses on as I get a headache going from contacts to glasses, though you may not. Due to low vision I am very adapted to my house and not seeing but may still step on a cat or their toys. If you choose to experiment with this I highly recommend you practice placing your wheelchair in the same spot and with someone there pace your steps so you memorize the lay out of your house. Things must go back exactly as they were or you will walk into things and otherwise hurt yourself. I go to the bathroom, then put eye drops in and set up my lay out at my desk all the way in the living room. Return to the bathroom, wash hands really well. I pretend I am a surgeon. Return to the chair with paper towels and go back to my desk. I go slow when blind and warn the cats. So far no accidents.

From there I close my eyes and see which eye burns less. My eyes burn first thing in the morning and sometimes it never stops. That eye is going to be the easier one. For me it is almost always the left eye. I save it for last. My right eye has scar tissue that makes it harder to get lenses in. However, even without that one eye will always be harder than the other due to the fact even ambidextrous people like I used to be when I had guaranteed arm functions have differences in each side of their body. My scarred up and roughed up eye tends to be belligerent and sometimes swells up from just eye drops. I also sometimes get hairballs in my eyes while I sleep and do not know it. So I take my time and I put drops in until I cannot feel it then close my eyes and wipe away the excess. This last step seems to really help me in getting rid of debris.

From there I pick up a lens. If its a fresh package I still do this as I found a warmed up contact is a lot easier for me to insert. The solution makes the lenses colder and with Reynauds my cold sensitivity is very high, and this took away an aspect of pain. I will not pretend contacts are painless but they are not agonizing and after they are in my eyes hurt less, so its worth it for me. I drop the lens into my palm on my left hand, aka the useless floppy arm, and clean it as I do on removal. I rinse it well then place it on the finger needed for the current eye. I then put eye drops into the cup of the lens after checking it by holding it very very very close to my eye for defects. This last part took some adapting as I still cannot really see it, so much as I se elight changes without my glasses. So I had to learn what cat hair, my hair, extra grime, too much skin oil, and tears look like via trial and error. This is also true of the dreaded inside out lens. The light refracts differently and you just have to learn. This part I still try for when I do it in the dark but its harder. I needed total darkness at first to succeed due to light sensitivity, and built my way to being able to do this with lights on.

Free of defects I then move my eye to the contact. Thinking of it this way means for me there is less fine motor involved. Others may need to approach it the other way around. The eye drops will sometimes spill or fold the lense but often I get it in on the first try. I close my eye then add more eye drops. You may not need as much ocular hydration but due to having thin eye tissues I have the worst case of dry eye my eye doctor has ever seen. This is a trait that the other people I know with Ehlers Danlos seem to share.

I keep that eye closed and repeat the process with my other eye. If my eye burns and eye drops do not solve it or hurts I remove the lens. There is a list of impossible things you will possibly be told by your contact lens specialist such as “Its impossible to put a contact in backwards.’ No, you can. So its important to remember if your contact hurts take it out. Sometimes I missed a cat hair, once it was torn, and once I had torn my eye the night before due to ye olde super fragile tissues and the lens being stuck to my eye from dryness. I thought I had hydrated it enough and was wrong.

I change the paper towel daily for this last bit before we tackle removal because that has to be adapted too. Rinse your lens case as needed for your solution. I had one where it was a no rub solution but the solution itself was too hard for me. No room for shaky hands or error, then because the peroxide base turned to pure water my eyes reacted and it hurt. You will during fitting be asked about these things, depending on your needs you may have a LOT of options or a narrow field of options for your solution. There were only two safe for me to even try and the first failed. I was lucky that BioTrue which is essentially tears works for me. It might be wrong for you. So clean eye case, leave it where its safe and can dry.
I may take my contacts out anywhere from four to eight hours later, I try to not go over that as personally, and again this may be different for you, my contacts start to get really dry about six hours in and I need epic amounts of drops. The when depends on how I feel. you will master your own eyeball sensations for it. My personal gauge is if my eyes still feel “tired” after eye drops. Often for me tired eyes, or the need to close them without needing to sleep is a sign of dry eyes. I personally apply drops on the hour, sometimes a few times in between.

Removal:
This is for me much harder than insertion still. I am tired so my body is less coordinated. My lenses often do not want to budge. I go through more eye drops at the end of the day than any other time. This is due to the eyeball tear and being cautious. It also has prevented more tears, even in similar conditions of dryness. I was told to press on my lens and drag it with one hand while prying my eye open to get my lenses out. The method taught to me NEVER worked for me. What I do is I look to the side, then with one hand pin the contact against my eye lightly, if it does not squish a little I add more drops. From there I slide the lens towards my thumb adding a little more pressure. This is not poking my eye but a small amount of pressure and it is to me painless. Most of the time the lense pops right out and I can proceed with the ascribed cleaning regimen for my lenses. I then put eye drops in my naked eye, and close it. I always do this one handed, forgoing the hefting of lids to get past my lashes but do open my eyes as wide as I can. This is certainly possible in part due to my eye shape.

I hope this helps someone considering contacts. There is no “If I can do it anyone can,” but if I can do it a lot of other people surely can despite it feeling impossible. It is a skill like any other and takes practice. With that in mind do not expect success the first time, no one truly succeeds doing this their first try. Expect to adapt, expect sensory challenges and if you are disabled or not, don’t be afraid to ask for things like dimming the lights to get started. The people who are working with you are there to help. Don’t  be afraid to do it your way, there is no one way, there are just standards that you must keep in mind. The most important thing is cleanliness. the need to close them without needing to sleep is a sign of dry eyes. I personally apply drops on the hour, sometimes a few times in between.

ely can despite it feeling impossible. It is a skill like any other and takes practice. With that in mind do not expect success the first time, no one truly succeeds doing this their first try. Expect to adapt, expect sensory challenges and if you are disabled or not, don’t be afraid to ask for things like dimming the lights to get started. The people who are working with you are there to help.

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Will I… (Trigger Warning)

 

I have been trying to hold back my level of suffering from the world. The various support groups for autism, Ehlers Danlos Syndrome, PTSD… every single one this is a reoccuring theme. I know why. Not only is being in this level of pain dangerous but it makes you vulnerable and often this is when people abandon you, attack you, or they cannot comprehend what you are trying to tell them. I do not as a rule cry when I feel so much pain but I silently sit and try to find the cause to fix it or I just learn that this is my new life. I must always be prepared for the permanence of my agony. There are people who are lucky enough that this is not the case.  I cannot stop hiding this, even when I try sometimes. There is the element of fear. If everyone knows that I can barely breathe for pain, then even the predators know. (Oh hello predators. Yes I will tazer you even when I hurt.)

This song is from rent, it is called Will I… thus the title of the post. I could die from the on going issues I have at any time. My heart could fall to pieces, a literal broken heart. I could have a heart attack from my stress and high cholesterol. I am bleeding internally somewhere, I could run out of blood. I could kill myself. That is why I am writing this post. You see, that is the whisper in the depths of what might be my soul. If I die it is over. I do not live out of some doubt about an afterlife. I do wonder but that is not a consideration in any of my choices. I do not stay alive for other people or the cats. I love many people deeply, so deeply there is an ache of joy. I guess a mental pressure sore from all the goodness. I stay alive because I want to.

I am afraid of dying and missing people. I am afraid of lingering in pain without dignity. I am terrified of being tormented by doctors as Ihave been lately. The nightmare is not the diseases or the pain. In fact some of that is better. I officially no longer am diagnosed with epilepsy but still have a seizure disorder of some sort. The some sort is not defined by science. Yet NOT having epilepsy is a miraculous thing.  It is a wonder to me.

I spend a lot of time advocating, and passionately burning for the world. Now I am just burning. The pain is in every nerve, even though some of them should not be communicating with the brain. My blood pressure is up, my heart is racing, and this is omnipresent. I have had to fight around government shut downs for my needs, but I did this. Yet all I want is to have someone hold me. Something no one can do at all. Maybe ever again. I just want to be held in a soft space of beautiful harmonics without actual sensory input. This dark space has no reality. I often find this song in the undercurrent of my psyche because it holds most of those things. Yet I do not have to wonder. No, my life will never get better. I will always have some agonizing wrong. Yes people care. I have never known how much people care, I think I do then it seems to grow. Maybe I grow. Maybe not.

I am terrified. I feel the race of time, not just because bleeding internally is very bad but I need this resolved for my mental health before november. My PTSD is at a peak height and I am not sure what I will be enduring medically but I know I will survive it if I can. Will I be allowed dignity is the true question. I am afraid to die and leave people I love, this is new to me. I never cared before. I always lived for things like spite, revenge. My revenge has been to build my life up into something I was told I could never have. I look around this space I live in and every corner has a marker of love. Every doll I own someone else gifted me, the Gothmas tree that needs its decorations and makes Sylvani happy, the pile of scarves I know will be useful and necessary that are clean, the myriad of tiny touches. My life has been a life of grief and loss. Now that I have things I want to hold on to I am afraid I cannot survive this. It is not a lack of will to live, it is a lack of trust in my doctors. I have no faith in even the best of them. Why should I with the ineptitude I have fought against for so long?

So I am left to wonder. Yes, I am in pain. No I do not know if I can survive this. I will try.

One more thing: The man who wrote Rent? He died from a condition similar to EDS called Marfan. That runs in my family too but I lack the features that mark it. That is LUCKY for me. I sometimes wonder if the pain he felt and held too close contributed to his dying, if that is why Rent hits the notes I sometimes NEED. Just a little tidbit for people who may not have known.  I do not reach for the anthems of survival that are broad and direct, they ring hollow. “I will survive” does not match my spirit. Even when that is indeed the attitude that I display as I emulate the bronco and buck for my life.

 

I am jagged glass

shattered now

pick me up

fear the cuts

I do not intend

Yet I broke

can you lift me up?

Will you laeve

I am broken

Never repaired

yet I was beautiful

I am beautiful

Shattered glass

so many sharp edges

yet it is true

I am beautiful

Advocacy: Lets Help Amanda Baggs

Long ago when I first started this blog I received comments from several people. It startled me. THe idea people would read this blog. Then I had to put it away and found out people didn’t quit following. So with that in mind I am writing the first advocacy post in two years. A great deal of what I learned about advocacy I learned from Amanda Baggs. She was kind enough to email with me for a short period when I had just survived my exhusband and I found comfort in her words. I was able to keep going because I did not feel alone. I didn’t feel trapped by all the things in my mind or the way I see and think anymore. Amanda is one of the most powerful advocates I have met, not in the sense others see power but in her effect that I can see.

These links are PTSD trigger alerts. Simply put, Amanda has been tortured by the hospital that should have helped her and is being bullied into a dangerous and potentially deadly situation. Here are the links and they do include how you can help. Sharing this post or these links will also help.

http://paulacdurbinwestbyautisticblog.blogspot.com/2013/04/no-anesthesia-for-disabled-woman.html

http://webmuskie.tumblr.com/ This tumblr has an entire series of documentation posts about the event. This is the first hand source of the info.

Please do what you can to help Amanda get her needs met and not be punished for the malpractice of her medical team. I am going to go curse into a corner and figure out how to make the calls around my brain tomorrow.

Update: I redid the links to the blogs, they should both be working now. I am not sure why they weren’t since the links are the exact same. If issues persist please let me know.

 

Christmas Murder: A Family Tradition (Trigger Warning)

I wanted to write something cheery, about how good I am doing. I really am doing well. I am going to a friend’s for Christmas, and while i am not religious and they are, they respect this and its about communing and being together, unlike most of the other invites I have had. The things to give people and kitties is in a stack taller than my tree, with some bits on the couch since I just ran out of room. I am still fighting the endless battle of finding a caregiver agency that doesn’t remove the caregivers I get along with, because we get along but I am not grasping by a single thread and falling down a cavern of despair and fear. I am still okay.

I wanted to write about the Iraq war being over, and how apathetic I feel about this and the whys. The too little too lateness, the fact that just because we decided oh hey we’re done doesn’t negate the consequences, the disabled veterans who are now going to be struggling. I wanted to. I only have one article’s worth of energy tonight, and the others may happen later but this article demands my attention. You see I just had a serious flash back because I was skimming the news and I ran into my first murdered child holiday story this year. I had managed to dance around them for a lot longer than normal.

I am not certain if the effect on me was so much stronger than normal because I am doing well and my brain could focus, because the snow outside in the second obnoxiously white blizzard has me aching and everything already felt a bit raw, or if it is because I got a package from my mother today and it contained not only presents that she clearly put thought into and that I liked but some Xrays of my neck when it was broken the one time this hit as an adult. Not snapped but cracks in the bones show up. In my gift box. That this is the only abjectly weird thing in there actually impresses me, but with Grandma changing her number to get around the call block, texting daily despite my lack of reply (even telling her to stop fails), or any other confluence of events this link which comes with a serious PTSD warning made my brain go off into the dark spaces.

My mind whirled through every holiday where I expected to die. That means twenty five years of expecting to die. My wedding, with my sister and her lovely poison muffins which were so very nasty no one even pretended interest, every beating, each time my mother just went to bed, each time I was afraid because I just wasn’t ever good enough for these MONSTERS. My family. My serial killer father. My molester older brother who still whines about how I didn’t let him abuse me. My older sister who decided that its my fault she threatened my life, technically kidnapped me and crashed the car. These WONDERFUL (that is sarcasm) people? Each time they threatened me was right there.

The time my father murdered me for Thanksgiving was right there. The reasons I began to question religion. Right there. In the name of holiday statistics, people die. The part that really hit me was, this will be amplified in a year because of all of the people too blatantly stupid to use their critical thinking skills. The world really does end 12-21-2012 because of all of the people who will murder in the name of apocalypse. We see this with every cult, every Harold Camping, and every other failed prediction. Every single one has huge points of logic, like the Mayan calendars not being prophetic, but people still buy in to this garbage. Same as with their gods. There are reasons to question faith always and by refusing to do so, they demean their religious choices.

I am totally okay with people believing in whatever, so long as it isn’t just because they were told this is their option and never considered asking why. I am okay with people believing in the end of the world as long as its not an excuse for murder. Someday the sun is going to explode and incinerate people. In a billion more years. This is a scientific fact. So someday there will be an apocalypse. In that eventuality we can always hope that there will be a single child launched in a space ship to a distant habitable planet with a yellow sun, and he shall rise up to become Superman. Until then, every year, ever holiday, and every fauxpocalypse people get murdered because someone just needed an excuse.

I do not believe in crimes of passion. I do believe in self defense. If someone dies because they tried to hurt me, that’s cool. Means a threat is eliminated. It means that I will also be horrified to feel blood on my hands again. I will question everything in my life. I will cry. I will scream. I will thrash against it. I will also have survived. Too often in these Holiday Murder stories there is a component of pity offered for the murderer. Just as there is in any murder of the disabled or elderly. It is as if by putting Christmas lights on the murderer they become somehow pitiable more so this time of year. That woman murdered her child and her father. There does not need to be a why. She killed herself. Obviously there was some sort of problem. Its not okay to use that problem as an excuse for why she murdered the child.

It isn’t okay either for people to presume that the Autistic person at their holiday gathering who is withdrawing out of a desperate need to escape sensory overload just needs to stop ruining the holiday gathering, because of course a melt down is so much FUN for us Autists. We really want to be in so much agony that all we can do is scream and cry. Every autistic person who melts down, I fear will die. I fear it.

I see the traditional tree, the gleaming ornaments, and I feel fear. The gothmas tree being black and decked out with my own brand of decoration isn’t just because Black Trees are prettiest to me, and silvery black ornaments look cool on them. It is because I wanted decorations that didn’t leave me with vague sensations of fear. So I modified my tree to suit my needs. The need to not wonder in the slightly stuck in PTSD mode by the omnipresent holiday if mommy or daddy is going to love me this year. If I am the only one who hears rape in the song “Baby it’s cold outside”, if I am so evil because I think hitting is bad. I regress I suppose to the small child who was hungry, desperate, my entire childhood was one big act of desperation, and wondering if I am expendable enough and which of the adults in my life, and as I got older my siblings, was going to be the one to kill me.

My mother was the only one who never said “I will kill you” with words. She still said it with her actions. Choosing my step father over me. She loved him more than me, and warehousing me was more convenient than murder. I got lucky. If they’d thought about it and figured out that at that point no one would’ve even noticed if I was missing, I think I would be dead. My mother may not have had the stomach for it but the rapist she married surely did.

In this moment I recognize why I have eschewed the holidays even with friends for the most part. The family traditions my family has end badly. They end in bloodshed, violence and tears. I cannot stop crying as I write this because I know each keystroke is another child somewhere in this world who is living as I did, or dying as I thought I would. My choice to believe in Santa was a conscious one. I always knew he was fictional but I wanted to believe in the goodness that he represented. I wanted to believe that there was someone somewhere who brought pleasant things. I wanted to not spend my holidays afraid for my life, or any other day. That is what the holidays are to so many people, and myself.

The holidays mean family and togetherness. Family and togetherness mean being tied up in a closet, lying awake at night waiting for one of the adults to get mad and demand the ritual beating. I mean literally the ritualized holiday beating. You knew it would come, the question was not a matter of that but if you would survive. Then you had to endure pretending nothing was wrong while making offerings to the parents, and hoping they were good enough. In my case there were offerings to the people around me for a lot longer. This is why I only buy Christmas gifts for people I want to. There is no obligation now, to survival by having managed a nice enough present. I reclaimed gift giving into something of joy.

Yet I cannot reclaim that little girl, who suffered. I cannot give her grandfather back his last moments and make them pain free, horror free. I cannot give voice to every child who is being abused in some way right now. The amount of violence and hatred that spirals up during the holidays, isn’t because of alcohol. That is an excuse that enables domestic and other forms of violence. It is because we all take time off to be together. This means the victims have no out of the house refuge from their abusers, and a smart abuser uses this to their advantage.

There is no excuse for the Family Traditions I have. There is no excuse at all. I look over to my Gothmas lanterns, my tree, and it still makes me happy, its a creative outlet after all. Nonstandard tree means a lot of customization. I look back in time and remember praying I wouldn’t drop the ornaments as we pretended to be a happy family, praying I didn’t bunch them wrong, praying I did the tinsel right. Praying that this year, God wouldn’t tell my father that I was evil. Praying that this year my mother would let me come home and that I would feel like I belonged. Praying that when people showed up to visit, or claimed to, they either would show up and if they did would not act in a way that hurt me. Praying.

I only miss prayer when I have no power to at least reach out to someone and gift them with my understanding, with the knowledge they are not alone in their suffering.

With the article I linked, I cannot overlook the clear premeditation. The gun she obtained without record of obtaining it. The sending her husband away. Did she just love him more or was it less? It was one or the other. The fact she chose the basement, which would’ve muffled the sounds.

This is the holiday season. Readers, if you are feeling depressed, please remember you can always write me. I may not write back immediately but I will try to. you don’t have to be alone. YOu can also find your local crisis line, and anonymously vent.

If you are an autist, advocate for your need for quiet. Even if it means locking yourself in the bathroom for an hour, take the time you NEED to get away from the overload.

If you are alone, volunteer at a homeless shelter. Go help the people who have less than you do, because you can.

If none of that applies, or if all of it does, make a new holiday tradition this year. Do something to either reclaim your holiday from similar circumstance or to share love and joy in new ways. WHile the holidays are arbitrary the need for human companionship, comfort, and to celebrate is not. These are important things and should be done without violence or fear.

You aren’t alone, I am with you and you are with me by the simple act of living. We are alive, and that means you are my new family. Happy Holidays if you celebrate them, and if not, stay warm this winter, enjoy the light displays with their pagan roots and remember the primal need for companionship winter brings out is normal.

Loud Silence and other Oxymorons!

I am having a pain day, yet emotionally I feel fairly good. I am watching my cat’s bathe, and just found a friend’s keys. That means they have to come back. I already called them too, because of course they must be hunting for them. It makes the writing jarring at times as I like the flow on the dance of the words. I have been so busy lately, finding the means to all the scattered ends that make up a life, that I finally am having a moment of peace and solitude. It sure is noisy in my head today.

I am amused by some random things, curse words, the way that the pillows on my bed look, the sound of my neighbor’s existence being so quiet here after a year of so much noise. There is a quiet in this apartment that I have longed for and it dwarfs everything. At this moment as the sun streams through the window brightening my home, the cats too are between their moments of gleeful play. Here they play, not just a little but a lot. They wake me at times, crashing and thudding, yowling and howling, and being free. Sometimes they wake me up just so I will roll over and wrap my arms around them both using them as pillows. Even with music my house feels quiet.

The quiet won’t shatter here, though I find the adventures of life are leading me to some odd discoveries. I am going through the process of getting reassessed for more caregiver hours, I am exploring Second Life at long last, and I find that second life is actually satisfying. To me the virtual world has never really satiated the needs for communication I have, but to see the other person’s online self has given me something I was lacking. It is not a perfect match for social interaction but, it does fill in part of the void.

The Oxymorons however, abound with Second Life. There is less chat speak present than I expected, and more dysmorphia of the body. You can see people who have made their avatars look anorexic, no one that I have met so far appears to weigh as much as they really do. I am not even human in this virtual world. I donned the form of a cat, so that I can run and jump and play. It cuts down on my jealousy with Sprite and William. Some of the males suffer from a body image issue as well. They are so bulky that it is frightening to behold, their bodies twisted into caricatures of humanoid.

I know if I spent more time out of the house I would see the same body image issues, and I know too the media perpetuates a large portion of this mental disease. Our culture is ill. The more we watch movies with actresses who happen to make a broomstick look like it is obese, the more we make these movies, the more pressure our minds are under. Children suffer most especially. When I was diagnosed with Bulimia at the age of eight, it was rare and almost unheard of for someone so young to have an eating disorder. Now? Eating disorders are common at any age.

I didn’t notice until two years ago how men are also effected by the movies. They too have the unattainable body type. The people who twist themselves into these forms, perfectly thin, without figure, without health in many cases, give up their free time, the ability to go out and do things with friends, and those who use starvation or an extreme diet put their mental health at risk. Dieting can kill. You hear about it with diet pills but the restrictions and extremes that are persistent and present right now are the most shocking, cutting your stomach apart so that you can’t fit as much into your body is not going to work if you do not pay attention to how much you eat.

Now I am not saying everyone who diets doesn’t need to. Some people have eating disorders or disordered eating that effects their health. Exercise and proper diet are what matters. Proper diet doesn’t mean a spoonful of tomato soup a day. It means three squares. It means the balance you can achieve with a mixture of foods that are safe for you to eat. It means too listening to your doctor even if it means giving up food you may like.

I noticed too, by no longer watching television I no longer feel as worried about my weight. I rarely did before, but at times the old messages about my value and my body came up. The recent activities that I have dealt with made that much harder. Improper diet can trigger improper behaviors. It is harder to reign in my anger, which can be at times misplaced. I can be harder, but, when I look in the mirror I see me the way I am. I feel more beautiful today than I did when I was belly dancing. I think I may be healthier. That last sentence could be another oxymoron, or merely disguised as one.

The world we live in prizes ability, appearance, and supposed beauty over health, happiness, and the ability to live. To fit into this world in the way that they wanted I was living in a private hell, I was so tired, I was also living in pain that would never be treated because of course the pain had to be in my head. Our society is sick.

I challenge my readers today to leave the TV off for one week. You can get your news online, but at the very least try going one week without a sitcom, action or adventure. Spend some time with your books, family, or in the roaring silence of peace. Document the ways that you feel before and after, and see if there is a difference between your perceptions. How toxic can our current media system be?

Some other questions you might ask yourself?

1. How often do I see people like me (ability, race, gender, sexuality etc) represented on the news? In TV shows? Broadcast network shows? Cable shows?

2. How often do I see people like me represented as broad stereotypes (the angry guy in the wheelchair, the ugly woman in the wheelchair, the lesbian for a week, etc)?

3. How often do I see people like me represented as the villain?

4. How often do I see people like me represented as the victim?

5. How often do I see people like me as the hero?

6. How often do I see a person of a moderately healthy weight or a person who is plus sized ?

7. How often do I see a plus sized person as the lead, hero, villain etc?

There are dozens of other questions you can ask, but, the most important:

How does the lack/plethora of people like me in the media make me feel and effect the perceptions I have of myself/others?

I look forward to reading a few responses, and I think I may go and read a book.

The Cliche of Anger

I am tired, in massive pain, and yet I still am riding on the waves of fulfillment. I worked an entire week straight. I am taking a few more days to get back to my standard however, and reminded myself why I do not work in a traditional manner. I would have been fired today for being unable to wear standard clothing for one, and my attitude for another. Every action I take, every interaction I am bogged down by references to the past, lessons, and reminders. I hear my mother’s voice most clearly, and that is not something I welcome. I want to be an individual not the product of my family.

I wasn’t going to post until tomorrow but I was reading a few pages over at Womanist Musings. The proprietor of Womanist Musings has recently outed herself as being amid the disabled. She is beginning to run into the challenges of being suddenly unwelcome, invisible, and at times hated for merely existing. Today one of the commenters told her that she should start a civil rights movement, ignoring the fact that the disabled community has been pulling for equal rights for as long as other civil rights movements have been in effect. Before we go on, I want to remind you my dear reader that every single civil rights movement hasn’t ended, and that the fight for equality is on going no matter what your ism is. This reader seemed to think that a few protests fix everything.

This ignores the protests in New York, the individuals who do sacrifice their energy and at times sanity to try and force businesses to comply with the laws, and it ignores the fact that there are those who came before you and I. This is an erasure of our history. I responded with snideness and sarcasm, ignoring for the few moments it took to suggest a hacksaw so she could remove her legs as “easily” as I can get off of my scooter, the voice of my mother. “All disabled people are angry, they think they have rights.” I am aware that it is the events of today that shape the memories that seem to nitpick at us. Before I was disabled my sexuality was most often the harbinger of a Mommy Memory. “Bisexuals are selfish, they just want to have sex with as many people as possible.” Every time I went to flirt with a woman or a man, I heard something like that.

The myth of anger is just that, a myth. It erases the happy moments with friends and family, it erases the moments where competent and open minded people realize that everyone has rights. The myth of anger is often used to subjugate. Stop being angry, so that I can continue to oppress you. That is what I hear. The expectation that an entire group of people must never feel one emotion is ridiculous yet this is foisted on women of color, the disabled, homosexuals, and countless other oppressed groups, all to control us. Anger is forbidden.

Many times when I am smiling, I am told, “This inaccessible area will be fixed soon, we swear!” The tone is always frantic, that hint of “Oh god she will be mad that we haven’t done this yet.” It doesn’t matter that I am smiling and just nod and say, “Great, thanks for letting me know.” The fear of my anger, which is some how more toxic than their anger or fear is there. I still don’t understand it, but, I see this often. The times when I am angry, I am also not heard. It’s enough for me to want to go back to trying to be Super Cripple, but, I won’t do that.

My anger is valid. Your anger is valid. Anger is not a reason to oppress, discriminate, or subjugate. Anger is not an excuse to not build the ramp in an accessible manner, and anger is not an excuse to try to “just get rid of” someone. I am tired today, and I am trying to seem reasonable. My mind is far from reasonable. I am in truth alone, and am having a small tantrum every time I need to get up to move. My fiance forgot to feed the cats, which merited an hour of sitting there whining about how I wasn’t sure if I could do it, I can’t bend, and their bowls are on the floor.

It wasn’t anger that had me make a really big mess trying to feed them either. That was love. They were hungry so I fed them, without bending. (Sorry honey, but the kitties have to eat too!) It won’t be anger that I let him know he forgot either, but amusement. Every emotion that I have is not anger. The lessons that our parents teach us, may shape what we see but it is the choice that I made in my first experience with disability as an adult that showed me otherwise. I chose to not see anger.

It’s really that simple. Demeaning an entire group of people does cause anger. If you fear our anger so much, stop discriminating. If you come near me right this second and discriminate I will show you anger, but I won’t run you down with my scooter. That’d hurt me too, and you just aren’t worth my time or pain.

To my friends, allies, and fellow disabled persons, don’t forget that every moment that we are alive is the revolution for our people. Every time we are seen out of our homes, with our assistance equipment, service animals, and even having issues, this is our revolution. VIVA LA REVOLUCION! Free my people!

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.

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