In two of my recent blog posts, I wrote about assorted music albums that have stood out to me in some way, shape or form. And I didn’t feel that it would fit in either of those blog posts for me to actually explain my process for writing those music reviews. So I’ll do so now: I’d listen to each album, mixtape or EP; and whenever I’d come across a song that moved me in any way, I’d write down my thoughts about that song, using the notes app on my phone. And even though this process probably took me a much shorter time to complete than people might think it would, it was the perfect way for me to write about the music, right as it was fresh in my mind. Come to think of it though, any time I’ve written about music-related things on my blog, that’s how I’ve done it. And the same goes for my writing here about podcasts that affect me in some way.
Last Friday, I called my neurosurgeon’s office, to verify that I wouldn’t be expected to show up to said office in person for my upcoming appointment the following week. The woman who’d answered the phone said something like “Oh, I recognize your voice. You’re Chelsea, right? The blind girl who uses a wheelchair?” I said that I was, and then addressed them by their name…and we each said that it had been awhile since we’d seen each other. It was nice to be recognized, especially being that this person sees tons of folks at their place of employment.
So within the last week or two, it’s gotten so hot where I live, that I’ve become worried about possibly over-heating. Because unfortunately, my body over-heating is something that I’m no stranger to. But given that the utilities where I live are paid for by one person, and given that everything as a whole is expensive here, I realized that I’d have to try and figure out a way to take care of myself in this horrible weather. Because the sad thing is, even though I’m not going outside in the heat, my bedroom heats up around noon, for several hours after that. And that’s something that I didn’t even know was a thing, until we’ve been forced to stay inside our homes for these past few months. Because before Covid 19 was even on the US’s radar, I went to school several times a week. And so more often than not, I’d be at school around the time when my bedroom would get unbelievably hot…so discovering this unfortunate information pretty recently, was not a welcome discovery, to say the least. And so needless to say, I’ve had my caretaker on the lookout for a workable cooling system that I could get for my room. And I think we’ve finally found one that’s going to be able to meet my needs.; as far as I know, the cooling system should be ready to be picked up from the store towards the end of this week. So, fingers crossed that all goes well, where this is concerned.
In an episode of the This American Life podcast, this episode’s host was someone filling in for Ira Glass (who’s this show’s usual host). And the theme of this particular episode, was about human beings dealing with physically being alone/other animals being alone. And the very first story that was told, was about the current host’s specific situation in which they are currently alone in their living space. And so, their personal situation encouraged them to talk to someone whose job it was to go into space and take notes about the things that they saw there. And ultimately, the person who’d been in space before, admitted that there does come a time when being in literal space becomes a longing for earth/longing for their home. Another story in this episode of This American Life, was about how someone experienced a wide array of emotions, in terms of the recent rules that many of us have been told to abide by. But ultimately, this person reflected on the good relationship they’d had with at least one of their parents and worked hard to keep a positive mind-set through these hard times that our world is going through. In another story about being alone, this one talked about how a particular animal in the ocean seemed like they were alone; there were people who’d even heard of this particular story and who wanted to do what they could to change this animal’s circumstances. But ultimately, people decided to just let this animal stay the way they were. But honestly in hearing this story, it seemed like even if people wanted to try and find this animal, doing so would be impossible, given how vast the ocean’s body of water actually is. In the next story though, we the listeners hear a heartbreaking story that talks about how immigrant families have been put in the custody of Immigration and Customs Enforcement (ICE). But the main people who were highlighted in this story, a young son and his mom, ended up doing what they could to make the best of what was a shitty situation for them. And thankfully, they were eventually able to remove themselves from that particular situation…but only because the little boy needed medical attention that could not be done where he and his mom were being held. And the last story on this episode of the This American Life podcast, we hear about a person whose actually chosen to live away from human beings. The person that this story is about, found that they’re happiest in their house, with the person they’ve decided to spend their life with. And this person talks about how they used to have a relative in their life who adopted a similar way of living, who they knew seemed like they too, were a happy person who loved the life they’d created for themselves.
In an episode of the Multiamory podcast, two thirds of its hosts Jase and Dedeker talked about the roles that getting or giving apologies plays in all of our lives. So for me, the concepts of forgiveness and also of family togetherness, were things that I was exposed to regularly, through my family of origin and other folks. And even though I didn’t have the language back then to articulate how I felt that forgiveness was far more complicated than any of the adults in my life wanted me to believe it was, I knew that I thought very differently about this subject than they did. And not just that, but it wasn’t until years later, that it dawned on me that as a woman, I’ve been encouraged by society to over apologize, if anything. And so, that’s exactly how I’ve lived my life, up until now. Hell, sometimes I still do struggle with over-apologizing or with flat out apologizing for things that there’s no reason for me to apologize for. But listening to this episode of the Multiamory podcast, where its hosts discussed this very subject, will help me remind myself that it’s OK for me to not always get things right; and along with that, I also ought to remind myself that I could definitely go much easier on myself than I have in the past. Because honestly, it’s easy for me to beat myself up and to treat myself much differently than I’d treat someone else who takes the time to open up about their own struggle with this particular issue. And that probably isn’t helpful to me in any way, shape or form.
In an episode of the LGBTQ&A podcast, the show’s host Jeffrey Masters talks with someone who’s disabled. One of the things that this particular guest on this show talked about that resonated with me, is the fact that able-bodied folks as a whole don’t see people with disabilities (PWDs) as having human rights. What I mean by this, is that able-bodied folks don’t usually think of us even being autonomous individuals in any way, shape or form. We who are disabled, are treated like easily breakable glass, or we’re spoken to like we’re children. And neither of those things are correct ways to respond to us. And in fact, that’s a huge reason why I ultimately decided to create this public blog: because people need to see those of us with disabilities writing about our intersectional identities unapologetically. We as PWDs need to be willing to share things that may be uncomfortable for us to talk about. We as PWDs need to be willing to call people out on their shit, as well as call them in as our supporters, if they are truly willing to become better people. Because another reality that this guest on the LGBTQ&A podcast brought up, is the subject of internalized ableism. And actually, I’ll address that subject later on in this blog post.
A recent episode of the Love Someone podcast that’s hosted by Delilah, featured someone who talked about their career in the entertainment industry. But something this person said that stood out to me, was something along the lines of “I seriously don’t get how people even function, without having God to guide their lives.” And as I’ve said numerous times before, that way of thinking is incredibly problematic, mostly because it displays how we still have so far to go in society, in terms of people accepting the truth that people actually can be good without God. And so, hearing Delilah and her guest say that they cannot even comprehend such a life being a reality, makes me want to be even more outspoken about my atheism. Because atheism influences how I move through the world; and just because in my offline life, I choose to find other ways of connecting with people and then to maintain those connections, that doesn’t mean that my atheism is not still a huge part of me. It just means that I realize that atheists are still seen by many folks as being one of the worst groups of people in the world. But quite frankly, that truth affirms my desire to continue being an out atheist even more, as I am someone who has a live and let live philosophy. I’m someone who doesn’t need to agree with everything that people believe in, to know that they’re good people.
In a recent interview I listened to on the Family Secrets podcast, the show’s host Dani Shapiro talked with a well known singer named Alicia Keys. And during these two people’s conversation with each other, the main theme that they kept coming back to, was the importance of us as human beings doing the work of creating a story for our lives that we’re proud of. Alicia Keys talked about how this current time that the entire world is in together, is causing people to let out anger in ways that they never have before, or encouraging people to take a stand about things that maybe they didn’t feel they’ve had enough of a powerful voice about before. But I also think that the current time we’re in, is helping content creaters like myself come up with content in ways that pre-Covid, I wouldn’t have necessarily thought of. And that’s honestly a huge reason why I’m truly enjoying this period of staying at home, not having much contact with people. Like, there’s part of me that has fleeting moments where I think about wanting to go outside…but then the reality kicks in that there still are not anywhere near enough people taking this pandemic seriously!! Like, my caretaker has recently told me that he’s seen people walking around outside without wearing masks. And so, the only way that I can keep myself totally safe as an immune-compromised person, is to never go outside. I mean hell, we as a nation have recently learned that the fucking White House has started changing the numbers related to Covid 19, with the intention of misleading people into thinking that the Covid 19-related death toll is not actually as bad as we’d initially learned it was. That’s beyond infuriating!! To think that the current United States president moves through the world like he can do anything he wants, without consequences, is wrong. But as far as I know, no one has called him on his bullshit in a way that’s shut him the hell up. I hope sooner than later, that that changes, though, as he’s truly horrible.
I finished watching the Netflix original show The Baby-Sitters’ Club; and I’m hopeful that this show gets renewed for another season. In the last couple episodes of this show, the baby-sitters are at a camp for the summer in which they’d been anxiously anticipating. And in the show, we the viewers see the baby-sitters repeatedly talk with each other about how they’re going to stick together at this camp that’s for kids. But then sadly, once they actually arrive at said camp, they find out that even though they’d asked the person in charge of camp if all of them could stay together, this person didn’t make that happen. But we the viewers quickly learn that the lady who runs this particular camp for kids is a real bitch. But the way the show ends, is with the campers organizing different activities that will allow them to use their voices and speak out against the creator of this camp. And honestly, I think what these kids did was incredibly powerful; and I’m so interested in seeing where this show goes, if it indeed does get renewed for another season. In my opinion though, I’d love to see more LGBTQ+ scenes; because I feel that that particular kinda representation is not shown enough in the assorted kinds of media that many of us have access to, like Netflix. Along those same lines, audio description needs to be an available option much more than it currently is. I think it’s becoming more a part of the fabric of streaming apps/services than it used to be…but it could continue growing…A LOT more!!
I recently read a book called “Unfuck Your Adulting: Give Yourself Permission, Carry Your Own Baggage, Don’t Be a Dick, Make Decisions, and Other Life Skills (Five Minute Therapy #3).” I know I know, that title was the longest one I’ve ever written here…but I always like to write the full titles of books at least once, so that people won’t have to do extra digging if they want to read any of the books I write about on my blog. But now that that’s out of the way, this book was by someone named Faith Harper. And nearly the entire book mentioned things that I agree strongly with. And so given that information, I’ll choose one of this book’s things that made a huge impression on me. The very first adulting skill I’m going to write about, was one that’s pretty far into the book; but honestly, reading about this particular skill made me feel so validated. The skill I’m talking about, is making one’s bed…or choosing not to make your bed. And yes, this is talking about actual beds.
First though, I’m calling this a skill because it’s been something that personally, I’ve been given flack about for years. Because back when I lived in my own apartment in San Antonio, I would only make my bed whenever I felt like doing so. Seems reasonable, right? Well, not quite, in some other adults’ minds. But the thing was, back then, I didn’t have the language I do now, to tell people to mind their own fucking business. So back then, I’d let people tell me things like “You know, people judge what kinda person you are, according to whether you make your bed or not.” And since I didn’t have the language to tell them how I felt about their shitty judgments, I’d just keep my thoughts to myself and continue doing exactly what I wanted to do, where making my bed or not was still a personal choice I made. But even so, I’d still feel horribly guilty. I literally wouldn’t ever even talk about this with people, even if they confronted me about it. And so, until I read this Unfuck Your Adulting book, this subject has just been quietly kept inside of me, due to the shame I ultimately felt about my frequent choice not to make my bed. But that being said, the shame I’ve felt for so long completely disappeared when I read Faith Harper’s rant on this very subject. Like, in reading her rant in this book, I was literally given permission to do whatever the fuck I wanted to where my bed is concerned, as the adult that I am. I know that probably sounds silly, but it’s true. But just for fun, I’m going to take you folks on a journey about this seemingly small task, that will more than likely make you never see bed-making the same way, ever again.
So going back to when I lived in my own apartment in San Antonio, one of the things I realized, at least to some extent, was that I had the freedom to do whatever I wanted; this included, of course, choosing to make my bed or not. And there were times back then that I did choose to make my bed, simply because I felt like I had the energy to do so. But there were also times when I’d make my bed back then because that particular living space allowed me the freedom to move easily from one side of my bed, to the other side of the bed. Well, that all changed when I relocated to another state; and as my bed-making situation stands now, I don’t make my bed. Because this particular living space which is a very small bedroom, literally does not allow me much freedom of movement. What I mean, is that there’s barely enough room in my bedroom for my ultra-lite wheelchair, my desk, a TV tray, my bed and a small fan that sits on the floor by my desk. And just to be as clear as possible, I can only easily access one side of my bed, along with the foot of my bed. I lay these details out explicitly so that people can hopefully get a vivid picture of my current situation. Because in order for me to actually make my bed now, I would have to exert myself by getting onto my bed on my hands and knees, just so that I could get as close to the wall as possible…so that I could then move my bedding appropriately and then do my best to neatly make the bed. But the thing is, just writing about how this task would have to be carried out due to my current living situation, is making me tired. Because I usually don’t think about all the steps that would be required for me to make this task happen…because I have no reason to!! Like, I know exactly what the situation I’m currently in looks like…but I wanted to do my absolute best to write about it fully here, as this discussion falls perfectly under accessibility…or a lack thereof.
In the Disability Wisdom Discussion Group’s Facebook page, someone created a topic about the way medical professionals can treat those of us with disabilities. The comment I wrote in response to this topic reads:
Thanks for bringing up this discussion; it’s a necessary one for us to have. I’m blind, have Cerebral Palsy and a combination of other health issues like chronic migraines. Before I’d actually been diagnosed with Rheumatoid Arthritis, chronic migraines and Systemic Scleroderma though, I’d been a patient at various hospitals regularly. Like, to the point where tons of the medical staff knew me on a first name basis and I the same with them. I don’t mean to get off on a tangent, but these details are all relevant to this discussion.
But to your question about medical gaslighting, I’ve experienced it more times than I can count. I generally have a cheerful disposition, even when I’m deathly ill in the hospital. And because of this cheerful disposition of mine, people on my medical team have mistaken that for me faking being so sick. And back then, I didn’t even have the language to explain to the medical professionals how this judgment of theirs made me feel. But what none of them seemed to realize, is that I have such a cheerful disposition because if I let myself go into the horrible depression/suicidal thoughts, I will literally kill myself…because I’ll just keep getting sicker and sicker. But as I’ve already said, and most especially when I’m in dire straights, I don’t have the bandwidth that would be required to explain myself to anyone. And to this day, these things about me are true. But what I’d say is different for me now, is that sometimes when I’m in these situations, I’m able to be honest with those on my medical team about my full experience. And fortunately, now that I live in a state that has more resources than the state I was born and raised in, I’ve yet to have any medical gaslighting experiences.
On my personal Facebook page, I wrote a status that reads:
Friends, I just want to say that the recent craziness with the school I attend has lit a fire under me and made me want to never be silent ever again; so if I engage with people who have opinions like masks are not necessary or who are supporters of 45, who comment on posts you make, I’ll do my best to be diplomatic with those folks. But I refuse to sit back and just read such comments, the way I used to. Because honestly, I believe that such comments really are harmful; and that those people need to be called out…and called in, if they are actually open to that. That being said, I’m not apologizing for the fact I want to be more outspoken with folks on people’s FB timelines; I just want folks to know that this is a recent change in me that I’ve come to think about differently…because silence truly is dangerous. To me, silence means being part of the problem. Silence means that fear dictates how I live/move through the world. Silence means that I don’t believe that I’m worthy of being heard…and none of those things are truths about me, anymore.
I also wrote another FB status on my personal FB page which reads:
Long post ahead, folks…but please stick with me to the end, as I think this particular topic is an important discussion to have. I think you all may be surprised at what I’m about to say…but I’m hopeful that this gives you all some food for thought…and that if it brings up questions for you, you will feel safe asking me those things. It’s important to talk about this issue frankly, and I’m someone who works on myself on the daily…so keep that in mind too, as you continue reading this. I want to do my part in educating folks about this subject and I have the energy to do so right now. So that being said, let’s talk about something I’ve never talked about as it relates to me: internalized ableism. For nearly my entire life, I’ve been made to think that normalizing my Cerebral Palsy and my blindness, both of which I was born with, was the key to making my life a good life. I had teachers throughout my life who I love, and who I know were doing the things that they thought were best for me–some of you are still my friends today. But please don’t mistake this post for calling any of you out; you were all working with the flawed system that exists, and the training you went through to work with people with disabilities. It can be incredibly difficult to navigate that for you as teachers–so I have all the compassion in the world for you all and for that lived reality. That being said, you were/are all lights in my life who helped me feel loved and cared for, when I was not receiving those things from many folks in my family of origin. You all have given me memories that I will and do cherish for the rest of my life. I am glad to still be in touch with all of you as a now grown-up. So when I talk about internalized ableism being frustrating for me, I’m referring to the system as a whole: a system that tells people “your life will be over, if you become totally blind;” a system that tells people “even if you’re born legally blind and with Cerebral Palsy, you should learn how to walk rather than learning how to use a wheelchair as an available tool in your toolbox of options to choose from.” I’ve had years of physical and occupational therapy that have also made this message clear: that me having these particular disabilities was something to be ashamed of. I learned that my Cerebral Palsy specifically, was something that people didn’t think should be seen. Yet because of this mind-set, even though I walked pretty poorly, I thought that this was my only option. I would fall several times a week, sometimes several times a day, yet I never questioned anyone about how this could possibly change for the better. I literally had years of physical therapy to learn how to carry a backpack on my back, and how to then fall gracefully with the backpack on my back. But looking back on that, all that’s given me is life-long back problems, a shitty attitude towards my having Cerebral Palsy and tons of shame about even having CP. But when I went to a training program after high school, that changed things for me. This program was in Ruston Louisiana and it was the first time that anyone had showed me a walking cane. But honestly, while I did come a long way in that training program, I don’t feel that I ever allowed myself to use a walking cane properly…because of my internalized ableism. And even three years ago when I was in Arkansas at World Services for the Blind, and someone let me use a walking cane throughout my time there, I still had that same mind-set. But now, in 2020, I’ve decided to finally face my internalized ableism head-on!! I’m ready to find a walking cane that is right for me, so that I can have the freedom to choose whether I want to walk or want to use my wheelchair. In 2020, I’m also ready to speak up about the boundary I’ve created of not allowing myself to be made uncomfortable–if someone wants to see me walk and I don’t want or feel comfortable doing so at that time, I hope that I’ll speak up about those feelings of mine. Because honestly, I don’t exist as an object that people can hold out as being inspirational, just because I’m living life fully, as someone with disabilities. It is not remarkable that I used to go to the gym to work out, just like many of you do. It is not remarkable that I live a full life, as someone with disabilities. I understand that society has told you and me otherwise…but I, a person in this particular minority group, am saying that that’s bullshit!!! It is remarkable that I left an abusive situation, especially given that my main abuser was the woman who gave birth to me. It is remarkable that I’m here now, given that I was born at 6 months–26 weeks to be exact. It is remarkable that I’ve carried myself through so much shit, each time leaving me more surprised at my own resilience. But please, folks, think about the way in which you talk about people with disabilities or even to people with disabilities. Please don’t encourage harmful things like internalized ableism in the world–please do open up dialogues about ableism and internalized ableism, in your families, in your communities and everywhere else, and help me change the world for the better, one person, one discussion, at a time. Please lead by example and help me call folks out if you see/hear internalized ableism or ableism, at all. I know that it can be scary to change these behaviors, especially when society tells you that these behaviors are correct. But please, hear me when I say that society gets this wrong–hell, that’s the huge reason why I’ve hhad internalized ableism for nearly all of my life. It’s hard to write all this and expose something that I’ve truly hated about myself for my entire life, having visible disabilities; but I know that I’ll be loved through this…so thank you in advance.