I recently went back and re-read my Claircognizance journal that I’d created at the end of last year. And the reason I looked at it recently, was because I wanted to see whether I’d put the weekday that corresponded with each date. And I had not actually done that; so I took the time to do so at the time I’d opened that document. And interestingly I wonder if anyone I knew as a kid who either taught me at the Texas School for the Blind and Visually Impaired (TSBVI) or who was a student there as well, knew that I had certain gifts that other folks did not, and do not, have. I mean, no one ever asked me anything along those lines…but I knew that this particular gift, even though I didn’t have any language for it then, was exactly what made me soooooo incredibly different from other people.
While I have a lot of friends here in this particular city and state, there’s only one person I hang out with quite a bit. And so I’m surprised I haven’t talked about this in more detail, given the fact that I blog about what it’s like for me to live with multiple disabilities…but this friend of mine has a truck and two different types of cars. One of these vehicles I’ve mentioned, is a Camaro; this vehicle of theirs sits very low to the ground. And in addition to that, it’s extremely hard for me to get out of said vehicle, because of how low it sits to the ground…and then if I get out of the car and there’s a curb I have to step onto right away, that makes things even more difficult for me. Oh, and I almost forgot to mention that getting my wheelchair into the Camaro is no easy task either. The chair is considered an ultra-lite wheelchair but even as small as the chair is, my friend can’t fit it into their Camaro easily. Oh, and one more thing: I have small legs but when I sit in the passenger’s side of this particular vehicle, there’s barely any legroom for me. And from what I remember about the other car this friend has, the explanation I’d give about why it’s difficult for me to get into and out of this second vehicle, is exactly the same as the one I just gave about the Camaro. Now, this friend of mine’s truck is very different: I have to lift my legs up pretty high onto the foot ledge of the truck, in order to actually get into the vehicle itself. And sometimes that’s incredibly difficult for me to do, especially if I’ve already had a long day that’s also been physically tiring. And other times, I need my friend to help me lift one of my legs up and into the truck. Wow, it’s insane to have written all of this down now, because I’m also thinking about how tired I’m getting, just writing all of this strenuous activity down. But it’s important that folks know this part of my truth, harsh and frustrating as it may be.
Thursday morning I called the person at the college I go to that’s in charge of getting students’ their books in whatever accessible format each student needs them in. I’d called them to let them know that I’d found both of the textbooks that are required for this class; I let them know that I’d found them both on Bookshare (a resource for people who cannot read print). And then given that this person is also blind as I am, the two of us talked for a bit about how when Bookshare first came onto the technology scene, said resource was awful. Like, the quality of books that Bookshare workers/volunteers had scanned/put into formats that screen reader users could use, was horrible quality. But thankfully, as the years have gone by, Bookshare has worked hard to ensure that the quality of books that they put out, is more than barely passable. And when I say “barely passable,” what I mean by that, is that they put in more of an effort to make their books as free of typos and other errors as possible. Now, that being said, I’m not criticizing Bookshare for being new at one time. Of course I understand that when technology and other resources are new, that means that there are going to be bugs and other problems that couldn’t necessarily be anticipated by people. In bringing up the fact that Bookshare didn’t used to have such great-quality books, I’m meerly reflecting on what I remember and saying that I’m thankful for how far this particular invaluable resource has come. Because having access to Bookshare as I do, means that my world is so much more open than it would otherwise be…and that’s something that truly makes me happy. Because as I’ve probably said on my blog lots of times before, I’ve always been an avid reader.
Friday morning the Director of the OSD at school emailed me, saying that they are looking for someone to be my interpretor for this American Sign Language (ASL) class I’m taking. TBH, I was shocked to read those words of theirs. But then on the other hand, I was elated, mostly because I know that the law states that Offices for Students with Disabilities are supposed to support educational goals that students who are disabled, have. And so after reading said email from OSD’s director, I responded to it letting this person know that in addition to the in-class help from an interpreter, I’d also need help from an interpreter or a ASL tutor outside of class because there will be homework assignments I’ll have, where I’ll need to watch a video and then write about what I thought about said video. So that means that I’m going to need someone to explain to me what’s happening in the video; and then I’m also going to need someone to take videos of me doing American Sign Language myself, and possibly even help me submit the videos, if the platform my instructor uses is not accessible with my screen reader. I also told the Director of the OSD that I need to add some accommodations to my accommodation form because there are things that I’ll need for this class specifically, that I didn’t need for any classes I’ve taken in the past. And one example of this that I gave them, is that I’ll need to take breaks from time-to-time because my hands have physically never done anything like this before…and so not only will they get tired easily, but they’ll also become painful because of my Rheumatoid Arthritis and Cerebral Palsy. They said they’d add that particular accommodation to my record.
But the thing is, there’s a part of me that knows I shouldn’t be grateful for the fact that this person is now suddenly willing to abide by the law, now that I’m actually in my first-ever American Sign Language class. I shouldn’t be grateful that a service like Offices for Students with Disabilities at colleges in the United States, exists here. And the main reason I shouldn’t be grateful for these things, is because these things simply allow me to have equal access to the world that sighted/able-bodied folks automatically have access to, by default. But yet I am grateful, mostly because when people finally just support me in doing the things that I want to do, that support of theirs makes my life less stressful, not to mention it makes my life considerably less difficult than it would otherwise be. And that’s a relief because it means that I can devote all of my focus to this course, both inside and outside of the classroom.
When I got up yesterday morning I got myself ready for my new friend to give me a different-looking hairdo; this one was different for me because my friend curled my hair using a curling iron. Interestingly though, I’d taken a shower shortly beforehand which meant that my hair was still a bit wet. That was a good thing though because hair is easier to cut when it’s wet, at least from many past experiences I’ve had with getting my hair done/trimmed. And also, while my new friend was here at my house, she painted my nails a dark blue color. She even taught me something new today which was that there are nail polishes that exist in the world that have a top coat layer in them already. And so that particular kind of nail polish was exactly what she’d used on my nails this time around. As always, I enjoyed having her around; I have lots of fun with her, just talking about whatever the fuck we want to talk about.
And shortly after I’d finished getting beautified by her, it was time for me to leave with my best friend to attend the celebration of life for Mom. And first and foremost, it felt great to be out of the house literally all day long. Because I haven’t done that much lately for more than an hour at a time…so this was pure heaven for me. And TBH, this memorial for Mom was not like any other memorial I’d ever been to before. But that being said, Mom’s memorial was exactly how I’d want my memorial to be, when that time comes. The only two things that I disagreed with about this service, was the fact that it was at a church, combined with the fact that the minister, pastor or whatever his title was, said that there’s really no such thing as death…and that there’s just life after life. And you know, I have no desire to take away anyone’s views, including this guy’s…but that particular philosophy doesn’t sit well with me at all. Like, as I’ve said time and time again here on my blog, this life is the only life that we have. An afterlife is something that brings comfort to some folks in the moment…but quite frankly, is just an easy avenue for folks to take, in order not to face the reality that death truly is final. And that is there life to do with as they please; it just gets under my skin to see that side of people who it seems are more comfortable conforming to society than carving out their own path for their life.
In an episode of Hidden Brain, Shankar Vedantam (its host) talks with a lady who’s from Spain and who’s also musically inclined. As a child, this lady was taught how to play the bagpipes because doing so was part of the folklore where she came from. But eventually this lady started to want more for herself; so it was then that she begun to create her own music using the bagpipes. And once she’d done that, she released a few albums. And then from there, she decided to relocate to the United States. Once she’d arrived in the US, she went to school to learn how to play the piano; and while she was at the school she’d chosen to attend, she kept her life living in Spain to herself. But then one day, a teacher at the school she was a student at, asked her if she could help translate a piece of music that was in a language similar to Spanish. She had no idea what to expect; but it turned out that that song was one she knew from back home, that was very traditional in her home country. And so long story short, she ended up meeting the person who’d created this piece of music…and the two of them talked about where she’d come from. And afterwards, some time went by…and she eventually received a phone call from the guy who’d written this particular piece of music. During this particular conversation, he asked her if she’d like to join him at an event and talk about where she came from as well as how she’d learned to play the bagpipes when she was a little girl. She of course went to this event, not knowing until later, that all of the people at said event were musicians from all over the world. And the entire reason that this man brought people together like this, was because he believed that music is universal and that, no matter where we human beings come from, beautiful music really can be made using instruments that people would never even think to put together. One such example of this, is bagpipes played along with an instrument from Japan.
In the next segment of Hidden Brain, Shankar Vedantam talks with a married couple who come from different countries. The husband comes from the US and the wife comes from the Philippines; and the husband and wife have learned to each integrate parts of their individual cultural beliefs and practices, into their lives as partners. And hearing this particular story for me, was interesting because I personally have not had a positive experience dating someone who was of a different culture than me. But that being said, I can and do see how interacting with folks from different countries can be a great learning experience for everyone involved.
In the next segment of this Hidden Brain episode, Shankar Vedantam talks to two men who are each from different countries. Both of these men have enemies from different countries as well. But at first, one of these men decides to support the military in his country; but in doing so, that’s what makes him have an experience that opens up his eyes forever. And what happens in said experience, is that as a soldier, this man is going into people’s houses with the intention of breaking those people apart, simmply because such people have been enemies of the country he’s from, for years and years. And so there’s one time in particular, when this man sees an elderly woman fall onto the floor…and her family just looks at her with terrified looks on their faces, none of them moving to help get her back onto her bed. And when that happened, this man realized that it wasn’t worth him and these people fighting with each other…for any reason. And then that was when he stopped supporting the military in his country because he started to believe in the importance of unity rather than hostility.
In a recent episode of the This American Life podcast, its host Ira Glass talks to a woman who grew up in England and Nigeria; he tells her story about how she’s always longed to live in America. And then she goes into vivid detail of how she’d fantasized about the kind of person she could be in America, from how she’d act, to the way that she’d actually live her life. And she and Ira Glass then talk with each other about how she’d gotten hired at a camp and how actually coming to America was what made her decide to find ways that she could appreciate things that made her happy. And in fact, happiness is what this particular episode of This American Life was all about. And yet another thing that made this woman happy, was that Ira Glass asked her if she’d like to host this episode of the show. She enthusiastically said that she would.
The first person that she talked to on this episode of This American Life, was a man who’d found happiness in taking up gardening as a hobby. And this man ended up taking a tomato he’d planted, putting said tomato in a container to keep it safe and then taking it with him whenever he traveled places. And surprisingly to me, this tomato was a huge hit with literally all of the folks who saw it, during this man’s travels. And TBH, I thought that this particular story was fascinating because carrying a tomato around is such a seemingly small thing; but the fact that this man had created this garden of food found happiness through said garden, was neat.
The next story that was told, was about a five-year-old little boy who’d be riding a school bus for the very first time. His mom was of course in this story as well, and the two of them talked with each other about this new excitement. Part of the reason that the boy whose name was Cole, was so excited, was because he has a big sister that’s a few years older than him…and he desperately wanted to do the things that she was able to do, like have his personal space respected, in more places than just his bedroom. And I must admit, I thought this story was adorable; the kid’s speaking voice sounded so cute.
The next person that’s a guest on this episode of This American Life, is an elderly woman whose found genuine happiness in the small things. She’s currently in her 70s; and after having taken care of her children and her deceased husband for years and years, she’s finally ready to do the things in her life that she’s wanted to do for herself, that she couldn’t have done while raising children or taking care of her husband. And something that she really enjoys, is traveling to different places; hearing this story warms my heart because I believe that every individual should live whatever life they want to live, as long as they are not harming themselves or others.
Another person that’s a guest on this episode of This American Life, is a lady who works at a zoo, making sure that the animals there, are taken care of. And although I’m not a huge animal person persay, I did enjoy hearing this particular story. There were some interesting animal noises that I don’t think I’ve heard before; and the zookeeper that was the main focus in this segment of the show, was very soft-spoken. But at the same time, she was totally genuine; it was obvious from the second she’d started talking, that she loved her job with her whole heart which honestly left me wishing that more people would learn to enjoy their jobs that they are not even entitled to have.
The last guest on this episode of the This American Life podcast, was a woman who’d experienced what it was like being happy for years; and then just randomly, a day came when that happiness completely disappeared. And so she didn’t know what to do, other than to pretend that she was still genuinely happy. And surprisingly to her, that worked for a bit, until eventually she became too distraught to do much of anything. And being that I’ve had days, months and even years of being depressed to the point of not wanting to even stay alive. And there have been countless times throughout my life that I’ve been so down/that I’ve questioned my purpose in the world. But given how all feelings ebb and flow if we let them do so, my severe depression was no exception to that rule; and so it was lovely to hear a story about another woman who’s been through something similar to what I’ve described here about my own life.
On Twitter I wrote the following thread which reads:
I find it insulting when as a content creator, people don’t value my work/what I have to say, the way I value those things. Like, if you’re gonna ask me to write something for your blog and then just sit on the piece that I took time to write for you, that’s a waste of my time. That being said, I’m well aware that I can’t make other people do things. And quite frankly, if folks don’t believe in what it is I’ve written for their blog then I’d rather not even be featured on it. But all this being said, it’s disrespectful to me to just have folks sit on…my writing. And I’m reminded of exactly why for most of these 2 years blogging publicly, I’ve never been featured on anyone’s blog, nor have I had anyone featured on my blog. Cuz I just know internally that no one will ever value my writing the way I do. That’s a harsh fact!!
An FB friend of mine posted an update on their page, saying that they’d recently lost a pet. This person loved their pet, similarly to the way in which I love most human beings. What I wrote to them reads:
Hugs to you. I won’t tell you that it’ll get better because no one can know that; but I will tell you that I know that you were the best dad ever to her. I’ll treasure the time you and she came to Arkansas to visit me when I was there in 2017. Allow yourself to grieve as much as you need to. I’m only a message away 💖
I recently wrote a response to someone in Childfree by Choice, on a topic where a person discussed not wanting to have kids because they have numerous medical issues that make it impossible for them to take care of kids themselves. And the response I wrote to that thread reads:
Thanks for posting this; what you said resonates with me so much. I have multiple disabilities myself, in addition to multiple chronic health conditions that can all become life-threatening at any moment. And like you, I’ve never wanted to have kids, for the exact same reason as you: the fact that the possibility exists that I’d hurt the kid because my hands/arms give out or something. And also like you, I wouldn’t want to have kids when I already know that I’ll never be able to take care of them on my own, due to the cards I’ve been dealt with in my life. I also agree with you that it would be selfish for us to have kids, knowing these things about ourselves.
In this same FB group, someone posted a thread asking folks if they’ve ever thought to lie to a doctor, in order to get permanent birth control for themselves. The response I wrote to that thread reads:
No, I haven’t done that. And TBH, it breaks my heart to hear that you would even consider not telling the truth. If a doctor does not support what you want, that does not mean that your desires are invalid. Find a Doctor Who respects and excepts your truth…