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.

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?

Diagnosis! Gotta Catch’em all!

I am in an emotional upheaval. I found out today that Block Insurance does not have any non Walmart Eye doctors. All of the numbers they gave me were between disconnected or offices without actual vision care professionals. I also was told to choose between Walmart and Eye Masters which is the Walmart of eye care. Would you go to Walmart for diagnosis and treatment of anything medical? I won’t. I want options. I want to see a doctor I trust, not Mr. Walmart Doctor.

I spent several hours on hold, trying to get an appointment. My right eye has an existing hole in the retinae, but no one wants to treat it. Now that hole has some little friends. I can see them, the spots grow and most of my vision is gone in that eye. I can barely see my monitor, and am defendant on the Windows built in Magnifier to see. I no longer read paper, I can’t see it. I no longer watch TV. I listen to it. I did reach the point of yelling on the phone.

The conversations were comically inept. “Thank you for Calling Block Vision, what can I do for you today?” “Yes, I am calling to try and find a provider. I …” Interrupting me, “Did you use the automated system?” “Yes, and the numbers were either invalid or the offices wanted to charge me despite my qualifying for zero copay. I also am not comfortable with Walmart for my eyecare needs. I have some advanced care issues.” I made a mistake. I admitted I need more than they want to offer.

“Spell your name.” I did. “You can’t spell your name like that.” Since it is my name and has been for a long time, I would not know how to spell my legal name. My last name is the issue of course, not the first. I spell it again, and get the same response. I am done. I want to make this person cry, I want to rain fire down upon them. Instead I take a deep breath. “Could you please transfer me to someone else?” I did not ask for a supervisor yet. “If you cannot calm down I am goin to hang up on you.” “I am calm, I just asked for you to transfer me to someone else, I do not think we are communicating well.”

She hung up. I kept getting the same person too, and after six calls I let go. I was already in tears so I screamed. I cussed. I told her exactly how good she was at her job, and since they claim to record these conversations, I hoped her bosses listened in and fired her. Not my best move, but, being treated like crap gets to me. The last thing I want is to be blind, unable to move, and unable to hear. I am being told that all that I and anyone else who is on Medicaid (mostly children) deserve is WALMART?!

Walmart screws up everything. I want a real doctor. Not some brainless person who barely managed to graduate. I want someone I can put my faith in. Wouldn’t a real doctor be hired somewhere else? I am not saying that every doctor gets the cushy jobs but I want access to the doctor of my choice or at least a variety. I do not want to be told I am insane for desiring trust with my medical professionals. I do not want to be told I have to pay out of pocket because I am low income and have other medical issues. I want medical care.

I want to see. I miss being able to see the faces of my friends clearly. I miss being able to see far enough to give safe directions. I do not drive but, shouldn’t I be able to see the end of the hood? A van doesn’t have a very long hood. I also want to do more than push and push to try and get proper care. I am so tired. I am tired of having to advocate. I have been advocating for people and fighting my entire life. I have always been the caregiver. I want someone else to do it.

This doesn’t work however. I can’t just stop advocating. I can’t because I do not know how. I instead took the time to calm down enough to call the Governor. I left him a voicemail along the lines of this, “Governor Richardson, I am a voter who encourages others to vote, “I always start out with the secret threat that if you do not help me I will not vote for you. “I have been trying to find an eye care provider.I recieve SSI benefits and am on Medicaid via the COOLTS program. You have influence here, the program has farmed out their providership for vision care to Block Vision. Block Vision is only allowing a selection from Walmart and Eyemasters doctors, I cannot get an appointment with them and my vision is degenerating. I need your help to fight for your constituents.” I left my number, and I know I should have been calmer but my voice likely gives away my frustration and the fact that I have been crying for the last few hours.

I cannot see. I am thankfully able to type with my eyes closed but there are errors. What if I wait too long to see someone and wind up unable to save my sight? I am not faithful in the system. Right now I am afraid I will be deaf, blind, immobile, dealing with the Autism, and autoimmune. I have one of every type of disability, it seems. I am losing hope today.

If I want to pay for my eye care out of pocket, I can manage that how? They want more money than I get a month. Why are we choosing between Rent, Medicine, or Dental/Eyecare? Why is it you can eat but not see. Oh wait, I can’t afford food. I am a celiac. Silly me. Bread is at least seven dollars. I don’t buy bread. I don’t buy anything beyond just enough meat to survive. I am HUNGRY but there are no food programs that can accommodate my allergies. I am greedy to want that right? I am greedy to want someone to help me. I am greedy to want a break from advocacy. Right?

No matter how many other advocates there are, I feel alone. I feel as if there is no where to turn. I have to do this alone. I have to do this by myself. Who can I ask for help? What would they suggest that I have not done? I am all alone, as every advocate is at some level. There is only so much you can have someone else do for you.

It isn’t hopeless. I am after the jobs of the employees who hurt me today. That means someone else can be hired if they are fired for their incompetence. This might seem cruel, but, isn’t it just as cruel to mock someone for wanting medical care? It is just as cruel to treat someone like garbage because they are disabled. I have HUMAN rights. I have CIVIL rights. You want to mess with me? Go ahead. I bite.

Edit and End Notes:
I do not care what your God or Bible says about being alone either. I have been preached at, as if somehow my choice to not pray every time some idiot steps on my civil rights is my fault for being a non believer. I do not believe religion has much bearing on the affairs of the state. So, yes, this is a snarly article, and yes I admit I messed up by yelling and plan to keep fighting but leave your god out of my life. I haven’t needed your god to chance things for myself before, I will not need YOUR god now. Thanks for respecting my religion.

It is not religion that is shared when you ask an opinion or vent to me. I offer ideas. I do not expect you to worship me, my gods, nor is this the same as pointing out that I surely would feel better with YOUR God receiving my prayers. Seriously, are your gods somehow starving to death or something? I know plenty of people in those religions who are. So keep religion out of it. You won’t find my religious identity posted clearly anywhere.

Corned Beef Homelessness

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A Response to “What are Service Animals?”

This conversation was held on MSN. My friend is using the Alias Tiffy, in respect to her cat. She asked the question about service animals and our discussion illuminates a bit more about what a cat is capable of. Eventually I will (hopefully) post video of my cat performing her tasks. I am sad to say my cat has an Upper Respiratory Infection courtesy of the shelter system and our new housemate. This doesn’t mean that you should not adopt, just make sure to get your cats medical care when they need it. All typos are left as is in the conversation, though emoticons were removed.

Tiffy says:
Ah, makes sense but scince I can’t see you, how can a cat help you walk?
Kateryna says:
My cat naturally shifts her weight to not fall. So, I trained her to shift her weight to help me not fall. What this means is that when I am walking and start to tip too far in one direction she goes to the other side of me and I can compensate.
Kateryna says:
She has cut my falling down by over 90%
Kateryna says:
Not enough   To stop me needing a wheelchair but I can go pee without falling five times in the six step journey
Tiffy says:
I think I understand
Kateryna says:
Awesome
Kateryna says:
Any other questions?
Tiffy says:
What else is she trained to help with?
Kateryna says:
She alerts me when I forget to take my meds. There is thankfully a lag time between the morphine leaving my system and the pain slamming back into me, and she can sense it. The trained response is for her to either get my med bag for me, or to yowl three times in a row.
Kateryna says:
If I need my meds and cannot reach them she is also trained to retrieve them.
Kateryna says:
She can also dial for an ambulence and can even call Locke on his cell if I fall or somesuch
Tiffy says:
Wow
Kateryna says:
She is trained to warn me when someone approaches from behind me, which cuts down on flashbacks and/or protects me from a random hand right on the injury
Kateryna says:
She used to do more but she is aging and has been sick enough times that the training had to be forgotten for her own sake.
Kateryna says:
Her mouth got torn up, she used to pick up objects etc.
Kateryna says:
She is even trained to “read” some packaging for me at the store, because i am blind as a bat and cannot see much anymore. So, she identifies the shapes or however she does it and paws the package
Tiffy says:
Ow
Kateryna says:
Yeah, she is allergic to poultry and the reaction cut up he rmouth,
Kateryna says:
The other things she does are more instinctual responses with trained reactions
Tiffy says:
Poor thing =/
Kateryna says:
She has a particularly shrill warble she gives when I am going to pass out, and if I stay still she calms down
Kateryna says:
If i am going to have a seizure she will yowl until I either stop doing what I am doing, it hits, or until I sit down, depending on what I am up to.
Kateryna says:
during the pass out time she calls for help, by going to every room in the house and making a ruckus
Kateryna says:
When it is a seizure she moves up to my chest and sits there unless I signal her to get help
Tiffy says:
So I guess most people who have service animals are pretty attacted to them, they’re really amazing
Kateryna says:
she is too sick to work right now, and I cannot get out of bed.
Kateryna says:
Direct correlation.
Kateryna says:
Without my service animal I cannot go outside, I cannot function.
Kateryna says:
It is worse actually than what it was like before she came into my life, because although my back is broken and my legs barely work, with her I feel as free as I did before my injury, and in some ways freer.
Kateryna says:
I lack saftey, I lack security, I fell four times this morning trying to do my daily things like peeing, because she is sleeping off her sickness.
Kateryna says:
I am also terribly worried about her, so I am not as efficient in my work.
Kateryna says:
A service animal is another limb. I love her more than Locke, but he understands why.
Tiffy says:
I hope she gets better soon
Kateryna says:
When she was electrocuted a year ago, he sent me money we needed for him to move out here, it took another six months to get him here but she would[ve died without it, and i am not sure I could survive without them BOTH. One I can handle being without but it sucks.

The Antidote for Discrimination Is…

I have felt the urge to blog repeatedly, but until now I have not given in. Blogging can be as personal as writing. I have spent the last week in preparation mode skimming the internet reading other blogs, seeing what I liked, what I didn’t like, and the power behind the words. Some of these bloggers brought me to tears, and that is no small feat. Others made me laugh, some caused me to feel sorrow, and a few gave me the chance to feel angry.

I wasn’t sure how to start my first post, but, since I am an advocate for all disabled, all women, all men, all people in need I will start there. The topic nearest and dearest to my heart is Service Animal Law. Some of you who read this might think you know about service animals, and you might be right. Others will presume that a service animal is only for a blind person. You are not correct. A service animal, by the federal definition, is any animal trained to assist a disabled person with a task. This does mean that if you have a seizure alert dog, it has to do more than that. The law even gives behavioral guidelines.

I have a service cat. She is trained to do things including retrieval, seeking assistance from specific humans in the case of an emergency, medication reminders, object retrieval, and she has also been trained to help me balance. A lot of these tactics came out of her instinctual responses, but those needed to be honed. She also had to be trained to handle a crowded mall. Now she handles it better than I do. People often ask me why a cat, and my response is simple. I am not allergic to cats, most of the time but I am allergic to dogs. I also trust cats, and I haven’t trusted many dogs in my life. I have to trust my service animal partner.

I have faced some serious discrimination because of being disabled. When I was still walking most of the time, it was harder because I was in extra agony since forcing myself to walk through a store took all of my energy. The more tired I am, the more pain I feel. There have been times when I have had shopping carts jerked out of my hands, causing me to either fall or nearly fall. I have been denied the right to buy groceries, and recently I have been illegally denied medical care.

I am perusing legal action but I am well aware that other people might not know how. Today, one of the blogs I read, reminded me that not every person is trained in how to handle discrimination. When you are disabled, you might feel more vulnerable to attack, and when people threaten to take away your service animal or refuse access, it can be terrifying. I feel often as if I am going to be hit if I push forward. I was an abuse victim for most of my life, but, adulthood came and I found a way to break free. Not everyone is that lucky.

So, here it is, my guide for other disabled people with any LEGAL service animal on how to advocate their rights. A side not before I begin, if you do not need a service animal, do not lie. We will catch you eventually, and the crime has a punishment. Depriving people of their rights through your shallow behavior is the worst thing you could possibly do, and, whether you believe in Karma, Hell, or just recriminations in this life from other people, you will pay for it. The law will get you, Advocates will get you, and if Karma gets you, it will be worse than anything I could dream up.

The Guide– Dedicated to Renne, Helen, Aimi and Snow, but especially Bree. (All Links will open in a new window/tab.)

Step 1. Stay Calm. This is for me the hardest part of advocating for your rights. Sometimes I want to run, other times I want to scream and cuss. Neither tactic is helpful. As hard as it is, you have to be the bigger person, and stay nice. You can have anger in your voice, do not deny the emotion but do not let the emotions over ride your goal.

Step 2. Calmly as you can, state that they are breaking the Federal Law. This is what I have practiced saying in the Mirror daily for the last two years. “You are violating the Federal Law. The Americans With Disabilities act provides protection for my use of my service animal.” When I say this I hand them a copy of the law. You can get a copy of the service animal laws from the ADA.  I  have the business brief printed with my state law on the reverse side. You can obtain access to your local service animal laws at http://www.animallaw.info/ I carry  my print out in aUSB case on my scooter keys. You can also buy laminated cards from various businesses with the law on it that explain your rights. For some people this is easier. Those cards are usually kept on your animal’s harness.

Step 3. Explain the law in simple terms and how they are violating it. This does mean you need to know the law. Not only does knowing the law protect you from discrimination, but, it lets you educate people. The biggest cause of discrimination in my experience is a lack of knowledge. If someone isn’t willing to learn, or admits they know, then you have a larger problem. One of the main causes of confusion with service animal awareness is that few businesses train their employees. It is illegal to require a service animal to wear a vest or show an ID tag. When someone asks me for this for my cat, I show them the law and educate them. Often, they will try and state she cannot enter because she is not a dog. My local laws state only dogs can be service animals. The laws are written so that the stronger law prevails. This means that if the Federal law says I can have any animal, that is trainable and meets the standards and the local law does not, we refer to the federal law. However if you live in a state like California that requires ID tags for all service animals, then, the law requires you have an ID tag. This is another source of confusion, but, it is an attempt at increasing the rights of many.

Usually by this point I am either in the building or they are just going to break the law anyway. If you have reached this point, it is time for Step 4.

Step 4. Take a very deep breath, and remember Step 1. Then ask to speak to their supervisor. If they refuse or are the supervisor you can try explaining the laws again, or calling another advocate to try and help. I keep the number handy to the local advocacy organization, and they have helped me countless times. Even knowing I can call day or night, is helpful because I do not feel alone. At this time I have no national links, but if you are in New Mexico, contact Service Animals and the Law. (Link forthcoming). If you have links nationally to websites that can help, post them in a comment. I want this page to be a resource for any person in need.

At this point you should be through the trying time, most managerial staff listen well and correct their employees. Recently I had to fight my way into an apartment complex using this tactic for three months. Even when I had food poisoning I had to try and follow my rules, but, eventually I prevailed. Advocating for yourself is the hardest part of having a service animal.

Not every person responds to this and if you still cannot get through to them, you need to contact the ADA. You can email them a detailed complaint, include names, addresses, contact information for both parties, and send it to ada.complaint@usdoj.gov . If you would rather call you can contact the ADA via their hotline using these numbers: 800-514-0301 (TTY-800-0363).

Remember, you are strong, you are beautiful inside and out, and you are not alone.

Other posts in this series: What is a Service Animal?

Additional Resources will be added as I find them:

Information:
http://www.assistancedogsinternational.org/
http://www.deltasociety.org
http://www.ada.gov/svcanimb.htm
http://www.ada.gov/qasrvc.htm
http://www.equipforequality.org/resourcecenter/ada_serviceanimals.pdf

http://www.animallaw.info/
Service Dog Vests and Supplies:
http://www.pettop.com/
http://www.raspberryfield.com/
http://www.activedogs.com/servicetherapyvestharness.html?gclid=CI-6iKm7rpgCFQEpGgod3QL9Ug
http://www.ldsleather.com/patches.html
http://www.petjoyonline.com/ADA_Federal_Law_Information_Card_for_Service_Dog_p/svd-0054.htm The Law Info Cards
Scholarships
http://www.assistancedogunitedcampaign.org/scholarship.html
http://www.keystonehumanservices.org/ssd/ssd.php
Blogs:
http://www.servicedogblog.com/

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