In my last blog entry, there were a few things I forgot to mention about the Britney: The Zone event. One thing, was that I held a stuffed animal that was shaped like a snake; that was fun, though one of my friends said that the snake looked strange. LOL. But the other thing I forgot to mention about that day, was that there was a swing from one of Britney’s music videos that I got to sit on. It was honestly a bit hard for me to transfer myself from my wheelchair to the swing because the swing was a rope type swing. This meant that while the swing was secure, given how it moved at even the softest touch, I had my friend stand behind the swing. And once he was standing behind it, holding it steady for me to sit on, I sat on it successfully. And if my memory serves me correctly, the smile I had for the pictures that were taken of this particular thing, looked great.
I recently submitted a feedback report to Apple regarding the fact that when I read tweets using the Twitterrific app, the tweets show up out of order. And I’ve written to Apple, as well as on my blog, about this particular bug happening before. So TBH, it was frustrating to me that this problem had been fixed, only to appear yet again. But hopefully, whenever Apple fixes it again, it will be fixed for good, at least for this particular iOS version.
I recently had a dream in which a staff member who used to work at the Texas School for the Blind and Visually Impaired (TSBVI) when I was a student there, was dying. And in this dream, one of this person’s grown children had one newborn grandchild. And I was present with all of them at whatever kinda event this was, crying because I didn’t want to lose this teacher for good. And yet another thing that was kinda weird about this dream, was the fact that when I’d watched this person who’d worked at TSBVI hold their grandbaby, that was a lovely experience I’d had involving a child. But that being said, I woke up relieved that that was just a dream.
Within the last week, I read a tweet on Twitter that invited people to be featured on a podcast where actual disabled folks talked about what their lives are like. And reading that tweet sounded like something I’d be interested in participating in so I sent an email to the host of this podcast, to let them know I’d like to know more about this opportunity. And fortunately for me, they emailed me back pretty quickly to let me know that they’d send out a list of topics for people to choose from, that those people would like to discuss on this podcast. They also encouraged people to send their suggestions for possible topics as well which I thought was cool. So I’ll of course keep you all posted, as soon as I know more. But that being said, I’m looking forward to this opportunity; like, I’m totally cool with being a guest on other people’s podcasts. It’s having my own podcast that I wouldn’t ever be into, mostly because I’m a writer. And I don’t believe in trying to force oneself to participate in a particular form of expression, when you know you won’t actually like that particular form of expression. And TBH, that’s why I most likely wouldn’t be featured anywhere with a content creator who wanted/expected me to censor myself. Because I’m a grown-up and being a grown-up means that I sometimes use strong language like the words “fuck,” “bitch” ETC. And that’s one thing that I honestly love about myself.
On Sunday I got my hair trimmed and my nails painted a different color blue. And while my friend was getting me beautified, one of my housemates decided to talk our ears off. The main person talking was opening up to us about the kind of person they like to date. They went on and on to us in detail about their ideal person which made me uncomfortable for multiple reasons. So for one thing, as I’ve said on my blog before, I keep my social life outside of where I live. I do this because I’ve had bad experiences where people have used things they learn about me, against me…and that isn’t ever OK. Also, the person who was talking mine and my friend’s ear off just assumed that we’d even care about how they conduct their romantic life. And that was wrong, at least in my perspective, because visually, my friend and I were communicating that we were uncomfortable. Like, when this person sat down near us and chose to talk our ears off, even having seen that we were already engaged in a conversation with one another, that was nerve-wracking. But as I’ve just said, I’m uncomfortable around this person so I just let that happen, without saying a word. But I’m finally realizing that this person is the kind of individual who likes to dominate every environment that they are in. Like, no one else can really say anything when this person is around, unless they flat out interrupt them. And while in most if not all other situations, I’d interrupt a person no problem, this specific person literally makes me so uncomfortable that I just totally shut down. And it bothers me that I do that because it’s not fair that I can’t enjoy spending time with my friends when they come to visit me, simply because this person is disrespectful and rude. Because the thing is, when this friend of mine comes to do my hair and my nails, we take care of those things in the livingroom/dining room area. We do this because that particular area is more spacious than my bedroom is.
On Monday morning I had to get up at 7AM so that I could be outside of my house at7:20 to wait for my ride. And I hoped hard that my ride wouldn’t arrive before 8 in the morning, as I didn’t want to get to school so early that no one would be there. LOL. And fortunately for me, my ride showed up literally a couple minutes after 8AM. And then, also fortunately for me, I was in the vehicle for awhile which meant that I got to school with a few minutes to spare. But since I hadn’t eaten that morning, I went to a local spot to order some coffee and something to eat. I ordered blended coffee with cream and sugar, a chocolate muffin and a burrito with eggs, bacon and cheese in it. But silly me, I forgot that the burrito would be really dry…which therefore meant that I’d choke on it at some point. And that’s never fun. Ugh.
Something that’s interesting about the paratransit company I use (which picks up people who are disabled as well as elderly folks) is that the company’s computer system doesn’t seem to work logically. What I mean in saying that, is that say you make a reservation to be picked up at 7:45 in the morning; you can only have the agent input a different time two times. So if you are unhappy with both of the times that the computer spits out, you hae to hang up and then call the company right back. Now, here is where things get weird as fuck: you wouldn’t think that calling this facility back would make their computer system present different times…but that is exactly what it does. So sometimes that’s all it takes to get times that you are actually happy with. But to me, it’s the weirdest thing ever!!
In Monday’s class period, we students learned how to ask each other how many shirts, shoes, jackets ETC, that we owned. We also learned how to say things like “I’m a student learning Spanish, French, ASL or English;” or “I’m not a teacher of ASL, Spanish or French. I’m a person who’s teaching ASL.” We students also learned that many signs in American Sign Language are so specific that if you aren’t careful, you may sign a cuss word; LOL. My instructor showed us students an example of how one incorrect hand position can mean the word “bitch” rather than the word “speak.” That had us laughing and making jokes with him. In fact I signed to him “you nice. Me, bitch!” LOL. And as has usually happened for me in the past, this time around was no different: I had a tough time creating certain signs because my right hand in particular, has a mind of its own, most of the time. But also as always, I did my absolute best and that’s what carries me through to success, every time I use ASL.
Yesterday afternoon I called the transportation scheduling company to plan my mental health therapist appointment for next week. And the agent I’d talked to, told me that my doctor needed to sign the paperwork for me to continue using this service…and they also told me that a new signature from my doctor has to happen annually. So I made sure they had the correct information to fax whatever they needed to send to my doctor; and after that had been done, they were able to schedule me a ride to and from next week’s therapist appointment. Initially though, I was worried that they’d tell me that appointments couldn’t be scheduled until my doctor had re-signed the necessary paperwork. But thankfully, that wasn’t the case.
Later that evening, a local friend of mine took me to my poling place so that I could vote in the primary election. But as it actually turned out, it was insanely crowded there; so we ended up going up into the mountains to vote with this friend and their family. And fortunately for my sake, someone at that poling place told me that they’d recently changed people’s voting ability…so as long as folks were in a particular county, they could vote anywhere within that county. So it was my lucky day, I guess. And the best part of this whole experience though, was the fact that I got to mostly experience completing my voting privately. But the one aspect of this that I had to have someone’s help with, was completing paperwork. Because just as happened last time I’d voted, someone had selected that I was going to vote by mail. I removed myself from that last time, as well as this time…so IDK why things keep coming up the same way, every time I vote. It’s infuriating!! But that being said, I was grateful that I at least got to vote in the primaries, this time around.
Now, regarding the upcoming US presidential election, I’m worried that we’re going to have Donald Trump as President again. I mean, I’m hopeful that I’ll be wrong, especially given how I’m constantly reading tweets and Facebook status updates where people who are republicans have said that they don’t support Donald Trump at all anymore…but I don’t feel any better about the situation. Ugh. LOL. But that being said, I’m hopeful that Elizabeth Warren becomes the next US President; I don’t believe that that will actually happen for her, though. But I love her because she plans to increase social security for people like myself who need such benefits, she’s all for the LGBTQ+ community’s rights/other minority group’s equal rights and she’s a woman. I want the US to have a woman president because we need someone in the oval office who believes in every person, regardless of how they identify, what religion or lack thereof they ascribe to, their sexual orientation, their political affiliation and on and on. We need someone in the oval office who’s compassionate and empathetic to the struggles that many minority groups face, just like seems to be the case with Elizabeth Warren. We need someone in the oval office that’s a go-getter, the way Elizabeth Warren seems to be. But like I’ve said above, I’m worried that we’ll either get a different Democrat elected in November or that Donald Trump will be re-elected. Ugh, both of those thoughts fill me with such dread.
In today’s class session, we students worked on reviewing some things that we’d already learned. We also learned some new things though, such as how to count through the number 30. But for me, I’m still working on bettering numbers one through 10 as well as numbers 16 through 19. So my professor is going through the lessons pretty fast, as far as I’m concerned. But that being said, I do my absolute best every day…which is all that anyone can do, really. But quite frankly, taking this ASL class is one of the few times in my life where I’ll accept a C for a final grade. Like, because of how hard I work on ASL, there’s no doubt in my mind that I’m kicking ass at it!! And so, when I think of how society in the US views C grades, I smile to myself about this specific situation because I do and will always know the truth about how my work ethic actually was in this course.
I was recently featured on someone’s blog. This particular piece of writing of mine was small though. But that being said, there were other people who’d written a few sentences in this blog post, whose writings were featured along with mine. This blog post was posted on the last day of February this year, on Rare Disease Day. And so myself and some other folks wrote about rare diseases that we have and what we’d want other people to know about those rare diseases. The post can be found at:
But that being said, I wanted to share what I wrote there, with some expansion because this is my blog. My writing reads:
Though I have many chronic health conditions, systemic Scleroderma is an auto-immune disease I have that’s changed my life in unexpected ways; ways in which quite frankly, I’d never want anyone to go through. For example, there are times when I’m mentally in the mood for sex…but my body won’t let me perform sexually; like, I’m unable to physically become aroused. This particular thing is something I deal with due to having Systemic Scleroderma, that’s frustrating when I’m in a romantic relationship because I want to be able to please my partner. And while I try to remind myself in those moments that this is something that’s completely out of my control, I still mostly find myself feeling sad whenever it happens. Although, I think in this last romantic relationship I was in, I was much better about taking deep breaths in these tough moments, than I’d been in the past. I mean, in 2015 when I was dating an incredibly toxic man who felt I owed him sex 24/7, he’d make me feel inadequate when I couldn’t perform sexually the way he’d wanted me to. Like, he’d made up in his mind that if we used lots of lube on my vagina, that lube would solve the problem of me not being able to have penis vagina penetration. And it didn’t matter how much I tried to tell this man that neither of us could change the way my body would or would not respond; according to him, I was the one who was stupid and just didn’t know what I was doing. And so I think where this particular issue is concerned, the fact that I’ve been great at choosing partners who have been judgmental/verbally abusive towards me, certainly didn’t help matters any. So all that being said, when I open up to folks and share my experiences with this or any other medical issues, trust that I’m telling the truth. The things I am saying may not be like anything you’ve ever seen or experienced, but ultimately, I am the expert on my body; not a doctor or other medical professional…but ME!
In the FB group called Childfree by Choice, someone posted a topic asking if they were the only one who felt like folks with kids are allowed to get away with murder. The response I wrote to that thread reads:
I’m glad you posted about this–I think that our society does embrace people having kids in a way that completely leaves us CF folks behind. Like, because our society is so fucking baby/child-centric, I guess people feel like it’s just what you to, to give people a free pass because they have vagina fruit. It’s unfortunate that this is how things are, but I think you’ve done an important thing in bringing this out into the open. I think that the more we as CF folks have our safe spaces like this group, to discuss/normalize this sort of thing amongst ourselves, the better off our world will be, the more we demand that our differing perspective be heard and respected as valid.
Also in this FB group, someone posted a discussion asking whether people ever felt alone. What I wrote in response to this reads:
Usually, I don’t have this worry. I mean, there are fleeting moments in my life where I think about how sad it would be if I never found my true love…but that’s just it, those are fleeting moments. With each year that goes by, I feel like I get better and better about truly enjoying being alone as well as being around people. Because for me, I need both my alone time and my time with others. I could not just choose one or the other.
Another post in this particular group asked if group members would date people with kids. And what I wrote in response to that question was something along the lines of “to me, being childfree is straightforward. It means that I don’t want kids, period!!” And someone responded to this thread, saying something like “not only would I not date anyone with kids but if anyone took me to task about this then I’d just assert myself.” And what I wrote in response to that comment reads:
But it seems like you are assuming that everyone would respect your boundaries, never push back on them and again, never try to push you into something that you don’t want to do. When it comes to kids, people can get ugly, no matter how many times you make yourself clear on what you will and won’t tolerate in the relationship. Trust me, I’ve learned this the hard way: that you can’t language-ninja people into seeing things your way/truly respecting your difference in lifestyle choice…
This same person then responded to the above comment of mine, saying that if their boundaries weren’t respected, that would be the end of that relationship for them. The response I wrote to that comment reads:
Oh, I agree with you. I too have done lots of work in therapy to learn how to assert myself in uncomfortable situations, whether it’s friendships or romantic relationships that we’re talking about. And so, like you, I would also leave a romantic relationship or friendship, if people refused to respect my boundaries. I posted what I did initially to you because many people are not introspective like us…and even in this group, I’ve seen people settle for things that they say they want to stick to…but then the receiver of those set boundaries reacts poorly and so the boundary-setter ultimately gives into this person who isn’t respecting their boundaries.
In this same FB group, someone asked what people thought of folks saying that as CF people, we don’t have anyone to take care of us when we’re old. The poster of this topic also asked whether we feel sad that we’d have to go to an assisted living facility. The response I wrote to that thread reads:
For me, this answer is straightforward. Going to a hospital/assisted living facility is what I’d do anyway because both sides of my family of origin suck…and I wouldn’t want anything whatsoever from them. But that being said, hopefully I’d be able to afford a living space that’s really nice, not like a cheap nursing home where there’s tons of neglect/abuse happening. I’m 32 but I’ve been put in a nursing home before, because no one wanted to figure out what was medically wrong with me. And just as an aside, how the fuck do people not see it as being selfish to say/think that one’s kids will take care of them when they are old? Sheesh.
In the Disabled Feminists FB group, someone wrote a thread asking us members who use wheelchairs what we’d like for people to know about what using a wheelchair is like…or what they as non-wheelchair users should keep in mind. And what I wrote in response to this thread reads:
Using a wheelchair does not mean that we can’t walk. Speaking for myself, I use a wheelchair because doing so helps maximize my quality of life. Using a wheelchair allows me to conserve my energy, so that I can have tons of energy, and the freedom, to choose when and how I decide to move. Also, I cannot walk comfortably or safely anymore, the way I once could. And honestly, I’d appreciate it if able-bodied people would respect that I don’t always want to walk, just because they want me to. And when I say I wish they’d respect that choice of mine, what I mean, is that they should accept my “no” as being final…because it always is.