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?

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When the Fantasy is Reality

I had to just sleep after the Toastmasters contest today. My chair, not working with my body since the chairfall, caused seizures. Again. I felt frustration and kept bouncing between one of the conference chairs and my scooter, pretty much between every speech. I felt paranoid about that but decided in order to judge and properly evaluate I had to try for the comfort level that was necessary. It did work, it was just obnoxious.

After the contest I had people asking me if I was me. I haven’t seen some of these men and women in seven years. Not since I was the one up on the stage giving a speech. I think it was about the importance of feet. I had to explain the chair to these people, but, instead of revulsion there was only acceptance. My brain rejected this.

Most people with disabilities, upon their disability becoming apparent face a world so full of revulsion that it is impossible to find a place with acceptance as the norm at first. It is common for persons with disabilities to face stereotyping, because of course if we want access we are just angry disabled people. If this isn’t what is thrown at us like daggers, then it is that we are stupid, or just not worth the time.

Today there was no question of my intellect, acceptance, and indeed I looked around the room and felt that sense of family again. For me feeling love and contentment with people is very rare. Today was the reminder I needed to reground me, not every place or every person is full of disablism. There will be people in Toastmasters who are, and perhaps places that are in accessible but in this case the majority is acceptance.

It does help too, that I am far from the only person with a disability in Toastmasters. There are a lot of people with hidden and not so hidden disabilities in this organization, some of the more prominent are those with disabilities. Some might argue this is because we have more time, which of course is scoffed at. A portion of disabled people still hold down traditional jobs. The rest of us do not work either because employment is difficult to find or our bodies do not work well enough for employment in a traditional field.

I myself fall into that last category. I do not work at a traditional job because I couldn’t function with in the first two days. My body requires more rest, and does not recoup energy as quickly or consistently. This could be Chronic Fatigue Syndrome, though my doctor and I agree it is merely a reflection of the energy it takes for me to balance, hold my body in place, and to work past the pain.

I am on rationed pain meds, saving them for when I cannot breathe or think until April unless I run into more disablism. Still, the realization of what I have merits trumpets and shouting from accessible rooftops. Toastmasters is my place, I can network there and I can help others. They help me too. I am going to compete in the Fall, during the next round of contests. Not just for the glory of competition, but, for the joy of being involved and active.

Do You Want Something From Your Father? (Trigger Warning)

The title of this blog is a question I was asked by my mother. Do I want anything from my father’s estate? I am not sure what is left, and if I take something is it really going to make me feel good? I am not certain yet. I am debating in my soul. Not just my head or heart, but this goes soul deep.

At times people ask for more information on what it is to be a Person with Disabilities, and I will give it. A request came my way for more information on abuse for women with disabilities, they wanted a personal story. I probably should have linked them to this blog, citing it as a resource chock full of detail. Instead, I posted an account of abuse, spanning my birth on through the beginning of this year.

I began to cry afterwards. I am having one of those days. I couldn’t sleep, I woke once an hour, and not always because of my own pain. I forgot that I could take pain medicine, the cost of the fight to obtain them, and had to give myself permission. So, I sat here sobbing away while sharing, for the greater good, a chunk of my soul. An injured bit.

William was destructive last night too, triggering more of my emotional response. He broke the mini blinds that the apartment complex requires via the lease, he then came over and tried to claw off a chunk of my breast. It turned out he hit my nipple but I couldn’t tell. It hurts badly, and yet this time I did not smack him. I instead hissed like an angry cat and he fled.

My person is also frustrated with me. I cannot stop snarling today. I just want to shrivel up and not exist. There is too much pain. It is too big and I refuse to subject myself to it, yet I cannot escape it without death and that means of course that I must endure. When I read novels they rarely mention the challenge of endurance when in pain.

I know too few authors are subject to disability to understand the complexities. Still, sometimes they get it right, and not always through the understanding that comes with experience. Sometimes, they may be empathic, or just those with massive amounts of commonsense.

I will likely write more later, but, I feel my father’s hands stroking my hair, fondling my body. I can hear his voice telling me how no one else gets to touch me but him or I will go to hell. I can feel the bile in my throat as he degrades me, breaks me, and I do not know how to st it.

This is a side effect of the PTSD, but I can see the reality this time. Still, the sensation is painful, my body is in agony already, why does my mind follow? Why am I haunted? Will it get worse if I do accept something from his estate? What if that something could help me with my own disability?

I am still not sure I have accepted that I had an effect on his last years of life even if neither of us knew it. I hate him, at times. Not just a minor loathing but a secret hope that he goes and burns in his own hell. Then again, it is possible that he did live in hell for a long time. A slow burning death, a bad heart.

Do I have a bad heart? No, but I work at it. I work at having a pure mind and soul, things he put into my head still mocking me when I fail. I work too to keep my body healthy. He took so much from me. Can I take from him? I really do not know.

Toasting the Masters…

Today I found my Toastmaster’s group. First try too! That part was utterly unexpected. Usually it takes a few trips around the group sets to find where I belong. Not today. I am still planning to go to the Albuquerque Toastmaster’s meeting tonight, but only to reconnect with oldfriends and really, only if I have the energy. I am kind of beat. The good kind of exhaustion come from energy well spent.

First, we had to find the place, and via Rand Mcnally’s better than Mapquest map maker (you can get turn by turn maps!) we had success. Walking in, there was a lovely security guard. She not only opened the doors for me but cheerfully gave me instructions on how to find the group and didn’t hesitate to allow Sprite the Service Cat into the building. The meeting was on the second floor of the building, and we entered it… the most awesome elevator I have ever seen. It was awesome despite my fear of heights. The back half was clear so you could see exactly where you are. If you fall you can see you are falling! The ride was smooth, and it was roomy.

Backing out I took note of the hall of doors and entered the first room, after seeing the Toastmaster’s TVC banner. I had a second to breathe and then the greetings started. Every person there had such genuine kindness and they were all excited at the prospect of meeting someone new. I transfered from the Scooter into one of the rolling chairs, because they looked really comfortable. They were sweeeeet. I volunteered myself to work if they needed anyone, and it turned out they did.

Today was their Club Level contests for the Annual International and Table Topics speech competitions. I was secondary timer, one of the required and more relaxing jobs. I had little to do but relax and enjoy myself. I did have bouts of nostalgia with the memories of Toastmasters Once Was, but, the toastmasters group I was in snapped me back fast, with their own brand of awesomeness. First and foremost the concept of a service cat was greeted with , “She’s adorable, and what a neat idea. You’ll have to give a speech about that sometime.” My brain almost broke with the acceptance.

It turns out that there is at least one, but I think two, service animal users. They often have a dog there, though the dog doesn’t react well to cats, so there is some coordinating to be done. I introduced myself, and went ahead and mentioned that Toastmasters is going to help me achieve my goal of Miss Wheelchair USA. This was met with excitement. I forgot most of the TM Groups names, but, they are so wonderful, I am going to join.

The speeches were all top bar, as a contest requires. One of the speeches was about the Superhero Inside, and almost made me squee out of habit at the words Batman, Superman, and of course Wonder Woman. This speech had appeal for any age group, and was so well delivered. I laughed, internally I cried just a little, and I laughed again. This speech will go far. The sec9nd place speech was just as fabulous, and it was about the discovery of Service Animals. The speaker talked about the joy and sorrow in sharing your life with an animal and encouraged the audience to get a pet of their own. The third speech was also good, though, it needed more polish and talked about the challenges of industrial labour. Each speech taught something, and each speech had a unique element. It was a hard contest for the judges. I got to count their sheets with the other Timer (Head Timer) and the Head Judge.

I came full circle. I left Toastmasters long ago (Six year!) just after the first round of contests, and I am returning just as it begins. I only felt welcome, even when Sprite spooked a member. She went under the table and rubbed against her legs, the poor woman (in a really snazzy outfit) was startled but again, so very gracious. I did not feel anything but that warmth of belonging.

I am going to start my speaking path over, as I am relearning about delivery from a wheelchair. it will be a challenge, but, how can I live without the joy of Toastmasters? Especially when the people are not discriminatory but accepting, the space is beyond ADA compliant, and, they will support my dreams? Just before I left a suggestion was made about having a Service Animal and Companion Pet gathering, that is a great idea with planning, though it must be done carefully to prevent fights.

I came away feeling energized, and only  grew tired when my wheelchair broke, though that is a post for another time.

Links:

Toastmasters International: Find a club near you, find information, or even renew your membership!

Toasmasters District 23: My home District

Toastmasters at TVC: My Group

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