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?

Advertisements

Sharing the Dream

I have a dream. It started small, with the idea of teaching other women with disabilities how to get their doctor to adapt to their needs, to make certain that they have proper medical care and it grew. A part of this is the rumor that in California there are accessible facilities for medical care. This access should be for all women and men with disabilities as well as those who are aging. A second portion is a discussion I recently spent two weeks taking part in. The third part is my own experience and the frustration that is omnipresent with my current medical needs.

I am sharing this dream with you for two reasons. The first is that I want your input. I am not an expert on all disabilities and I want to make this dream a reality. The other is that this will be my platform when I make my run for Ms Wheelchair USA. So, here it is, my dream.

I want to create not just an accessible doctor’s office but an accessible facility that has several purposes. First and foremost I want an accessible mammogram, one where you do not have to call, beg, and push to get access but where it is expected that you will need access. This will be furthered by a program to teach you how to adapt to your bodily changes and limitations while being able to fulfill the self exam for breast health. If you cannot adapt, either due to paralysis or other limitations then I want to offer the option of having a doctor or nurse perform your exam for you. Breast cancer risk does not magically vanish the minute you are suddenly disabled. It often goes up!

This goes further, I want accessible exam tables and facilities to offer every woman regardless of function and mobility a pap smear. I have an annual cancer scare, something tries to trick us into thinking it is cancer yearly. This year’s cancer scare surrounds my pap and it’s abnormal results and other tests that scream, “You might have cancer!” I am more worried about the high table, embarrassing lack of hospital gowns that actually fit, and my physical issues hampering the test than the actual possibility of cancer. I am loathing the idea of half climbing half being shoved up on that table, half naked and without any chance at privacy because I need help at times to even move my hips. There are accessible tables. Other forms of accesibility will be needed. I want to hear from any persons of short stature, what are the needs you face in the doctor’s office that are not being met? Even the most accessible table for a tall person will fail you, so please tell me what you need so that you are not excluded from my dream.

I want accessible facilities for rape victims with either severe injuries due to the actual rape or a previous disability. Writing these words has me panting with fear, but, how many women could be protected with evidence that is not obtained? There is enough of a violation with in rape itself, but being violated and treated like you do not matter after is a crime as well. This alone could be my platform focus, this alone could impact the lives of countless women. Accessible rape kit access with proper training for those taking the kit is a must. this is the part of my dream that is frightening, this is the part of my dream that feels the most out of reach. I must reach this goal however, for every victim and survivor that exists now or may exist.

I also want a center for adaptation. The Center for Adaptation would include a kitchen, a bathroom, and other areas that the once-abled take for granted. I still have not managed to cook a meal without harming myself in years, but a place where I had the safety to learn without being in danger of literally killing myself would help. This adaptation center must include potential assistive devices so that before the money is spent by the individual they know if the device will work. I wasted so much money on items that I cannot even use. Everyone does. Most persons with disabilities or freshly disabled persons have a very limited income, therefore this is a key component to creating universal access. Imagine learning how to cook around your limited energy, ability, and strength? Imagine learning how to clean again, and imagine too learning other things such as crafts, or finding ways to adapt so that you can create art? Dream with me and see it, a place of learning for all levels of ability.

Not just learning but socialization. I want people of all ability levels to commune together. There need to be varying support groups, socialization groups, and even a place to coordinate activities for the single individual and the couples. There needs to be a safe place to discuss sex with in ability, there needs to be a safe place where intersetion occurs. If you are gay, bisexual, a lesbian, or a transgendered person with a disability you deserve this just as much as someone who does not overlap two subgroups with in the realm of minority. The able bodied need to be welcomed here too, so that they can learn, assist, and so that there is a lack of segregation.

There needs too, to be a place to work with Service Animals. This facet will have to have answers to questions about the legalities of service animals in the given area, certification challenges, and training suggestions. Although it will not be a place to get a service dog, there needs to be a place where safe support can be found easily. Safe support that can come and help you advocate, safe support that teaches you to self advocate, and safe support for the process of accepting your animal partner.

Less medicalization of life needs to happen, and the focus on that aspect is a place to find good fashion, perhaps this could even become the funding source for my facility. The fashion needs to be adaptable to the wheelchair users needs, most likely this will require custom tailoring. The clothing needs to be affordable but also fashionable. Persons who have disabilities cover all age groups and the institutionalization of clothing is unacceptable. The clothing must also be in a broad range of sizes. Just as wheelchairs need to fit everyone from the small child up to the very large adults, the clothing must as well. Giving a place to access good, quality, stylish clothing for men and women with varying abilities will be a huge part of this, simply out of my own desires. I desire affordable clothing that works with my ability. I do not want to trip over skirts that are too long, I do not want to have my sleeves caught in my wheels if I use a manual chair, and I am presuming this is a universal frustration.

There need to be classes as well to train those with degenerative conditions to adapt, or those with compound disabilities to adapt. Perhaps the adaptation center is a new spin on the idea of an accessible home to learn in, yet, the focus on this portion includes teaching skills you might not have. What brought this to mind is my own degeneration. I lost my ability to walk and my sight is endangered. What adaptation can I have if I cannot see to drive my chair? I must learn and there needs to be a safe place for this. There needs to be a place where it is safe to feel the fear, the hope, and a place where there is hope. There is too little hope for the disabled demographic in this world.

A part of preventative care is dentistry, though I have yet to find a dentist who can work with my limitations. There needs to be a facility for dental care. I have a cavity I cannot get tended due to my combination of allergies and inability to bend backwards in their chairs. This cannot be. This is discrimination, yet to stamp out discrimination there needs to be action. If the facility cannot have a dentist, then it needs to have an office where accessible vision and dental care is listed, where referrals can be given, and it needs to be a place where there is acceptance that every body has a different need.

Disaster Safety is also a concern. During the disasters that hit the world, such as Hurricane Katrina, the disabled are often left behind. Their families may stay so that their loved ones do not die alone, and therefore these devalued people are murdered. It is murder to leave someone behind because it might be hard to deal with their wheelchair. A part of this facility needs to house a program that teaches people how to advocate, adapt, and prepare for emergencies. This program also needs to teach FEMA and other rescue organizations how to rescue the disabled. We are people, we deserve life, and being abandoned because of a wheelchair or cognitive disability is murder. It can be helped, it can be changed.

A lot of the focus here is on prevention and adaptation. My focus is not to cure disability, to wipe it out. That is impossible and I have gained from my own limitations. I cannot imagine a world without Autism as being beautiful, for without it I would not exist. Therefore the focus needs to be on preventative medicine, there needs to be a focus with in the facility on adaptive medicine, and there needs to be a focus on demedicalizing the bodies that have limitations. There needs to be a personalization of existence. I exist beyond my disabilities, though they are a part of me. We need to foster acceptance of self, of difference, and we need to offer a safe harbor for all people with all abilities to commune.

A lot of people are unable to work, are fighting for government assistance, and are dying without durable medical equipment. I want to offer rentals, loaners, and at times even the purchase of needed medical equipment such as CPAP machines, wheelchairs, and walkers. These are just examples. There would be a qualification process, and yet the freedom I felt that first time I sat in a manual chair and had more than three hours of coherent function haunts me. I have nightmares of being trapped without my chair now, I have nightmares that others feel that same terror. Those nightmares are realities. This program could use older equipment that was donated, purchased equipment, and could perhaps eventually include low interest/zero interest loans with minimal payments to allow people to obtain equipment. This could help those with a copay and a minuscule income to make ends meet. This could help someone who is choosing between homelessness and a wheelchair to get the chair and keep their home.

A second facet on employment is access to workforce training. There are already facilities yet at times access is denied based on a lack of visible potential, so, I want to coordinate with them to try and educate and prepare those who want to work but are being told they aren’t worth the training. An entire segment of this facility needs to be coordination with existing organizations to get people what they need, to get people connected with the programs that exist. A lot of people who ask me for help do so because they cannot find programs that fit their needs, even when they exist. A hub in the network could make their impact broader, while in a way delegating some of my dream over to their offices. I know one facility cannot possibly do it all.

This is my dream, this is also why I was so quiet this past week. I was dreaming, trying to put into a coherent idea what is needed. This facility will need funding but the insured can be charged. I do not see this as a fee free environment but money should not cause a person to not be able to participate. If a person can pay, or if their insurance can allow coverage then they should pay. Much of what is offered should be covered under Medicaid/Medicare and other insurances without issue. The rest could be funded via donations and grants. I have no idea what I would call this facility yet, but, that is not the most important focus at this time. Branding must come after a plan for action is laid out.

Share the dream. Share what you see as a need. Please feel free to pass links to this post around, I want to offer a taste of freedom to a set of people that anyone can join, to the only equal opportunity minority. If we band together, we can change the world and create universal access. This plan is flawed, this dream is imperfect yet it is merely a start.

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.

Post Traumatic Stress Disorder and Advocacy (Trigger Warning)

In conversation with one of my young friends I had a revelation. This was about thirty seconds ago. Sometimes advocating triggers flashbacks while I am trying to function. My mind lept then to other people who have to self advocate through PTSD symptoms. It isn’t always a flash back. If you do not have PTSD it might be harder for you to understand being jerked around by past trauma. Therefore I am going to explain, and this is why there is a trigger warning on this post. Sometimes reading about PTSD or other issue related things can trigger people.

This is not from the DSM (Diagnostic Manual thingy) but is from my experience. I may leave things out that apply to you or tell you things that don’t. The problem with labels is they are often not enough to truly explain what something means. Lets say someone shoots a gun. My first impulse is to be very still, not breathing, and praying that my father won’t make the shot. Even typing that sentence my head went into the land of fuzz and my chest is tight. I am taking slow breaths to focus and clear my mind. The trigger is not always a gun but just a loud pop. My brain is stuck on certain points of the abuse I suffered, it has a programmed loop that it likes to play. I have warning symptoms for my flashbacks now, and can often circumvent them.

My reality is in jeopardy from these loops. the weakest symptom is a tingle, intense fear, sometimes I start randomly bleeding. Why do I bleed? One theory a psychologist offered is somatic symptomalogy. Basically my body remembers, and it reacts so strongly to what my brain signals, that it thinks it is injured. This adds to the pain I feel. The pain from invisible injuries is far from phantom. I feel it. The next step after that is the sensation that I am floating, I disassociate and can see the entire world, but I am not connected to it. Usually I then go back in time. I see and feel at the same time, from multiple vantage points my father with his brand new gun, me and my siblings on the couch. I feel the cold metal of the gun pressing against my forehead. My nose stings with the tears I cannot shed.

The loud bang comes, I feel the heat of the bullet, my skin is burned by muzzle flash and I feel a horrible pain as the bullet grazes my temple. I don’t move. I don’t scream. I just stare up into that black hole, smoke pouring out of it and avoid looking into my father’s eyes, knowing he is going to be angry that he missed. I hear every word he screams again, how worthless I am, how I should be dead and must have moved. My sister starts to scream, my brother too but I can’t move. I look into his eyes and I see the blackness.

I still do not remember what happens next, though I have been told he decided to shoot at my sister, but I pushed her aside. I just know he tried to shoot his children, sitting on a couch that smelled like pee, and nearly killed his neighbor because the bullet went off. The cops were called but I took the blame. I said I was playing with his gun when it went off. I lied, to survive.

When I come back to myself I always want to vomit. Instead I focus on breathing. If the nausea is really bad I will take some Rolaids. Sometimes now, after years of effort, I let myself cry. Usually I manage a tear but my brain has yet to grasp the concept of tears. If I am not at home, it is worse to recover. At home I control my environment, I have a bed to curl up in, two soft fluffy cats, and my Person can go elsewhere more easily giving me the time I need to recover.

When I am advocating and flash back, I never know what to do. I try different things, and usually they work but the vulnerability can be debilitating. I flashed back my first time having to seriously advocate to that scene. That is why I chose to relate it to try and explain what PTSD is like. I wish I had simpler words but none can encapsulate just how much there is to it. Sometimes the flashes are different, sometimes I am still an adult but I am trapped, it is worse in some ways because I still feel the pain but I am completely aware that my world has vanished. I am never certain if I am going to hurt someone. I have before, but it has been a long time.

That first taste of advocacy was so bitter. The cops came, and one fondled his gun and my brain shut down. I was afraid, in pain and exhausted. I was being yelled at and deprived of my prescription because I needed my service animal. The cops even saw Sprite follow her training. When I flash she has three tasks, beyond her instinct to comfort me. First, she signals to my Person for help. Sometimes a conversation can end it. So she chirruped at the person of the day, and I had to form the words, “I need you to deal with them for me. I can’t.” Then, she helps me to sit. I had to wait fifteen minutes for a chair, I wanted to scream at them but I tried to stay calm. I was hyperventilating, they took this as my being dramatic. Then, she moves to my shoulder. Her instinct is to sit on my chest, but she might get flung there, I do not handle pressure on my chest well even when not panicking or flashing. Her instincts tell her to purr, to rub with just her face against mine. This grounds me.

The police threatened to arrest me if I did not leave the facility. I knew enough to know they couldn’t but they refused to acknowledge that I had rights. I couldn’t fight, but I had to. I chose then to repeat the law over and over. I couldn’t think, I couldn’t see their real faces for half the time. All I saw was my father and his eyes that reflected no light.

What can you do if you have PTSD and are an advocate? Here is the how to portion.

Step 1. Before you get to the point of advocating, have a support structure. This is a difficult process, because not every person can truly understand what it is to lose your reality. You need to have someone you trust availible, at least to call.

Step 2. If you have medications used to treat the symptoms of your PTSD in an emergency make sure to carry them with you, to keep a back up dose with your support person, and to keep your doctors number handy.

Step 3. Create a kit of items that help forestall your flashbacks. Nothing works for me beyond my cat. I can give her the signal she is trained for when i feel the warnings coming and ground. This is all I have right now, beyond my Person. No meds, just those two.

Step 4. Remember to breathe. Sometimes if you focus on just breathing you can help yourself.

Step 5. If you flash back during advocacy, try and focus on the responses that do not match the memory. This has worked for others, pulling them out.

Step 6. Advocate anyway. I did get the illegal policy over turned at the Pharmacy where I was threatened with arrest. I had to fight for a long time to do it, but, they relented. It is worth it even though it you might feel endangered or might BE endangered by your flashbacks.

Step 7. If you have to, stop. This opposes Step 6. Not every incident can be worked through. You might need to call your therapist, you might need to let your support person advocate for you. This is not a failing, this is merely the team network that advocacy should be.

I am glad to write this how to. I never considered how important it could be, but, in my mind my broken back, my asthma, and my failing eyes are not my most dangerous disability. The worst disability I have is PTSD. At times during flashbacks I have hurt myself, my friends, and reliving the painful memories can also cost me emotional, physical, or mental progress.

Keep in mind the time you are most fragile is just after a flash back. Some people can be triggered more easily, often it is easier to react in rage. Do not minimize your pain either. It is okay to cry, scream, and sometimes to just walk away.

I have done all of the above. Not every incident with advocating will cause a flashback either. Most of my time advocating I am left with memories of victory. My first taste of advocacy is as sweet as it is bitter, because I still succeeded, despite my unabiding terror of these men. My greatest cause was also revealed to me. I am actively fighting to get the local police trained in how to deal with enforcing the ADA. I want my rights protected, I do not want to fear being put in jail, dumped out of my wheelchair and my service animal being put into Animal Control’s care.

That was the threat, and so often is. My heart goes out to any other advocates who suffer from PTSD. I know each person’s PTSD is varied, some may not flash back, some might just panic. Others might not be able to stop their flashes. You can still advocate. Just prepare yourself as best you can.

  • Polls

  • Ye Olde Archives of Fury

  • Top Rated

  • Top Clicks

    • None