All posts by Syd Chasteen

About Syd Chasteen

"It is not the strength of the body that counts but the strength of the spirit"- J.R.R. Tolkien* Intro to Me- Hi I'm Syd I'm a currently jobless disabled chick (Spina Bifida; Hydrocephalus; Executive Dysfunction) possessed of a manual wheelchair, quick wit and all too reactionary personality. All thoughts and opinions expressed on this blog are mine unless otherwise sourced. Intro to the Blog- I probably know more than I think but not as much as I act like I know. On this blog you'll find lots of apparently controversial ideas like disabled people deserve respect and civil rights. I look forward to sharing my thoughts on the world, issues facing the disability community and my life as a person with a disability. Don't expect a regular posting schedule, I'm neuro divergent not a superhero. -Syd *Maybe, apparently whether Tolkien said it is debated. Follow me on Twitter and Tumblr @BifInMediasRes!

Be A Mushroom – 100th Post

This is my hundredth post to this blog. Six years after first launching it, and a year and a half after I actively started writing here, I’ve made it to a hundred posts. When I first realized I was coming up on a hundred posts, I immediately started thinking of it as this major milestone. I had planned on writing a post full of meaning and depth to really mark the occasion. Dear ones this is not that post.

For one thing, it’s late. I fully intended to close out 2020 with the hundredth post, but as you can see that didn’t happen. I wanted so badly to put a high note out into the world, to finish that hellish year stronger than I started it. But it didn’t work out like that.

It didn’t happen because I left 2020 weaker than I started it, or so I felt at the time. The end of the year, starting around the end of September, has been progressively rougher for me these last few years. Part of it is seasonal, part of it is grief and trauma, but regardless it’s hard. Surprisingly, or perhaps not to those familiar with doing the work, the thing that’s made it hardest the last year or two has been the fact I have made progress. I notice such an incredible difference between the person I was even two years ago and the person I am now.

But despite how proud I am of this growth, I cannot deny how hard it is to be where I am. Yes the good days are better, brighter and so much more frequent. But this makes the bad days so much harder to weather. The end of last year was a major struggle for me, not because I wasn’t trying, not because the meds stopped working. It was hard because, it was.

I’ve been working through so much these last couple of years and within the last few months especially. I’ve researched constantly, taken online assessments and listened to others with similar experiences, trying to get a better understanding of how my brain works and how I can help it work best. I didn’t know it was coming, but the end of last year and the beginning of this year turned out to be a period of intense self discovery and clarity, even more so than coming out or my initial realization of being neurodivergent. There was some struggling to adjust, but I can genuinely say I haven’t felt this level of comfort and peace with who I am before. I feel like I am the most me I’ve ever been.

Getting here has been so much intense work. A friend recently said she didn’t know how I was doing it and still able to function. That’s my secret, there is no function. In most other aspects, my life is a dumpster fire. My house is a wreck near constantly, my hygiene and self care are sporadic at best. As for my relationships (outside of my husband and a handful of other people), there is much work to still be done.

On the subject of relationships, I’ve been thinking recently about how many people know completely different versions of me. Whether they only knew me as a little kid, or as their student, friend etc, they all know these completely separate pieces of me. Even certain relatives, people who have known me my entire life, only see a certain version of who I am. But that also means they all hold different parts of my complete life story. While I can’t help but think that’s incredibly cool, it’s made me realize how much of myself I’ve left with other people.

Part of this process of figuring out things has been actively piecing together the elements of me that are just mine, the pieces of me that, while they may have been affected or created by outside influence, are for me and no one else. This has been intense. And it’s caused me to retreat further and further into my own space as I pieced more and more together. A small, very guilty, part of me is actually grateful for being able to have the space and time afforded by social distancing. There are so many people I miss fiercely. But I’m confident that the next time we meet I will be a stronger happier person than I’ve been in a long time.

I’ve joked often through this period of seclusion that I’m becoming a sentient mushroom. But honestly that’s a fairly accurate analogy. I’ve retreated so deeply and been so far inside myself it’s akin to a mushroom underground before it fruits.

What a lot of people don’t realize (warning cottagecore nerd has entered the chat) is what we consider as a mushroom sprouting is almost the end of its life cycle. Most of the growth, most of the work, to become what we recognize as a mushroom happens deep underground. Not only that, after they’ve spouted there still are underground systems of connective tissue that link a mushroom to other mushrooms. The bonds formed while in this process of growth are maintained and strengthen each individual mushroom later on when they burst from the soil strong, resilient and with the ability to give of themselves so others can take root and grow through the same process.

Basically what I’m saying is I’m a mushroom. I’ve been deep in the darkness, growing and making strong connections with others in similar situations. Now, I’m on the verge of becoming something new and showing the world what I have to give.

If this is where you are right now, or if you find yourself in this position down the road, just know it’s ok. It’s ok to go through periods of darkness and growth, just don’t forget those connections to others. I’ll be one of those connections if you need it. It’s going to be ok. Be a mushroom.

To the Hole In My Home

Note: I originally had the idea for this piece back in November as part of the social media contest “Letters To Home” (h/t Tabitha Brown for the inspiration). But I never got around to writing it, and it’s been in various drafting stages for the last month or so. But here it is finally. I hope you enjoy it.

Deep in the hills of the Ohio River Valley, there is a small town located smack dab on a major highway. In this small town, tucked away in a mostly quiet neighborhood is a little gray house. Inside the house there is a hole.

Well, not a hole as you’re probably thinking of it. This Hole is a small room, with tables, a bookcase, and a TV. There is also a bed, covered in blankets, pillows, plushies and stim toys. In the Hole there is also a Bif.

Hi, I’m the Bif. This is my hole. The plushies are mine. The stim toys are mostly mine. This blanket nest is mine too. This is my hole.

The name of this room started as a joke from a YouTube video. The joke became funnier after I came out. Now I’m the ace in the hole.

But it’s so much more than a hole. At one point a little over a year and a half ago this space was where my husband and I held ourselves together while we tried to figure out how to keep our heads above water after he lost his job. It provided comfort and closeness. Even back then it felt like just the small, safe place that was needed.

After a time it became less of a space he relied on, but somewhere we could still stay close and just be with each other. We still spend evenings and his days off curled up in blankets watching YouTube or playing video games. But for me, I still very much draw comfort and solace from this space, even more than the rest of my house. That’s not to say I dislike our house at all. I love so much about this house that’s become our home.

But this space is different. I’ve spent so much time here. Wrapped up in blankets snuggling plushies on the bad days. Writing and reaching out connecting with people on the good days. I’ve eaten, slept, laughed until I passed out and cried until I wished I would, all in this room. Major mental health breakthroughs have happened, as well as nonverbal phases weathered, all from here.

My husband is my safe space in a person, but this room, the Hole, is just as much my safe space. I’ve felt recently like my days of spending so much time here might be coming to an end. There are things I need to do, life I need to live. But I will forever be grateful to this space for being what I needed for so long.

The Lowest Bar

After four years, the Trump administration ended. This last year alone saw our country dealing with the loss of hundreds of thousands of lives to COVID-19 as the number of cases continues to rise. On top of that increase in violence against African Americans resulted in nationwide protests which were met with more violence. This is what the Biden administration is inheriting. These are the problems President Biden and Vice President Harris must work to rectify.

Regardless of your political stance, whether you are in support of Biden’s politics or not, this country is clearly in need of massive change. And after the last administration, the bar seems set pretty low. Even if Biden’s only accomplishment in the near future is stemming the spread of COVID-19, it will be a huge victory.

That being said I do expect more. I expect attemps at unity and growth for our country. I expect individuals to be made more financially secure and stable. I expect equal rights for marginalization communities to become a priority and a reality.

Maybe I expect too much. All these are only hopes at this point anyway. But for the first time in a while I feel like I have room to hope. I have room to breathe. I have room to just be, if only for right now.

Saying that brings me back to my original thought, because just being is also the lowest bar. But it’s enough. It is ok to just be. It’s a start. I can work with this (low bars are easier to wheelie over if approached correctly).

So I’ll continue to be; I’ll continue to hope. As my country gets back up on it’s feet to finally move forward. When the time comes, and it will, I’ll fight again. I’ll apply pressure in the direction I think things should go. But unlike the last few years I don’t expect to be met with as much resistance.

Google Is Your Friend

Before I get into this topic, a warning: this might get controversial. You ready? Ok…Google is your friend. In fact the internet at large is quite pleasant, especially if what you’re after is information in order to better educate yourself on a topic.

So often I see people online, often members of one or more marginalized community (Black, POC, Indigenous, disabled, LGBTQ+) talking about being approached by a stranger and that stranger proceeding to treat the person as their own personal encyclopedia. If this has ever been you, or if you have ever considered doing this, allow me to reiterate the above. Google is your friend.

I can already hear the naysayers, and you’re right. Like anything else, this isn’t a black or white situation. The internet isn’t all good, but neither is it all bad. The key is understanding how to go about looking for an answer. But I promise you when it comes to learning about marginalized communities doing your own research is far and away the better option.

Firstly Wikipedia is a pretty decent source, but it shouldn’t be your end all be all. Look at the sources cited by the wiki, research those as well. Sites ending with .edu or .org are likely to be more credible than the standard .com. As much as possible, stick to sites run by or for the marginalized community in question.

Look into the history of the community, learn about their struggles and the ways in which they remain marginalized in society. Seek out organizations doing public education on these topics. As much as possible keep in mind that your sources should be as close to or part of the community you are trying to learn about. Read books, watch movies, listen to music created by that community. Find own-voice stories told by members of the community.

Apart from doing this personal education for your own growth, if you do engage with a member of a marginalized community above all just be respectful. Be kind, be courteous, be human. Members of marginalized communities have to do so much just to survive. Taking time to educate you shouldn’t be something they have to deal with. So make an effort to do your own research. Become an ally to marginalized communities and make the world a little better for everyone.

Everything Doesn’t Need To Be A Blog Post

Hello dear ones. I’ve missed you, yes even those of you I’ve never met. I’ve missed this connection, this feeling of reaching people with my writing. And if you’re new to my blog, welcome! I’m the Bif in question. I hope you enjoy what you read here and are able to take something away with you.

As I said I’ve missed this. It’s been weeks since I posted and a few months since I’ve honestly wanted to write. I’m behind on reading as well. Fellow bloggers I see you and I will catch up with your work, I promise. There are some personal reasons for my absence, but I’ll get into those in other posts. For now, I just want to talk about the act of writing itself.

So much of my time is spent drafting new content in my head, or rolling new ideas around. A problem I run into a lot is deciding whether an idea I have is actually worth turning into a blog post. Sometimes as soon as I start workshpopping an idea I’ll realize there’s not enough there to work with. This can sometimes lead to me combining ideas together to make a more cohesive piece, other times it’s more of a struggle. But a lesson I’m actively trying to put into practice is everything doesn’t need to be a blog post.

This is something I really struggle with for several reasons. One is the drive to make as much content as possible. I have readers who enjoy reading my work and so naturally I want to give them as much quality content as possible. Quality is my next issue. I’m only capable of creating a certain amount of quality content each month. Judging by my analytics that amount is about one less than gets read consistently every month.

This tells me I’m hitting the mark on almost every post but one that I put out in a month. So why is that? Frankly I don’t have an answer for that. Maybe it’s my writing schedule making it so one post is rushed, or not as polished, or maybe just not interesting. I don’t know.

I do know my posting schedule is an issue. I almost consistently publish all of a month’s posts inside the last week or several days of the month. Hint, hint I’m doing it again for this month. I don’t mean to, but for whatever reason that’s how things shake out.

One result of this is I stay behind on topics currently affecting my community. This is the main reason I don’t do current events style posts very often. I regularly miss the window for talking about a subject because by the time I’m ready it’s no longer relevant or I’m just parroting someone else.

I don’t know the reason for saying all of this honestly. Except maybe to say I know my readers deserve better. I deserve better. I hope in the coming year I’m able to hold myself to a slightly higher standard. Regardless, I’m so incredibly grateful to have you all along for the journey.

Guest Blog – Closets Aren’t Accessible: Coming Out As Disabled by Bridget Dies

I have been “coming out” for so many years. It’s agonizing each time. Will they still respect me? Will they dismiss me? Will they be cruel? Will they understand or even try to? Yes, I’m gay, but I’m talking about being disabled.

I’ve had to “come out” about as many times as disabled as I have for being gay, maybe more. Wanna guess which one I’ve met more acceptance for? It’s a sad world we live in where I am just as worried about doctors taking me and my illness seriously as I am to be accepted for my sexuality. Ideally, neither should cause me concern, but I grew up in a conservative Midwestern town that has me inescapably rooted in the reality of bigotry.

When I was growing up, kids were lucky if their family accepted them when they came out (still accurate). Nowadays, there are really lucky kids who just exist and don’t realize they need to come out…they just are. I love that progression, though I’m not so delusional that I think it’s become the norm. But with chronic illness and disability, I don’t feel a progression.

Instead I feel left out, ignored, forgotten, societally useless (as labeled by others, not myself), and exhausted down to my soul. No one prepared me for this. I knew what possible reactions to expect when I first came out as bisexual, but nobody told me how much I’d be mistreated when I first became ill.
I am supremely lucky to currently have a phenomenal support system of friends and family, but you should know that I built that myself and had to kick people out of my life in order to feel this way.

We need to stop breaking people to make them fit into some mould of expectations handed down to us by narrow-minded, bigoted people. I am desperately wishing to see more love and acceptance in this world. Please.

Just A Thursday

Today is International Disabled People’s Day. It’s a day marked by the U.N. as a time to recognize the disabled community around the world and strive to make society accessible to and inclusive of disabled people. But I’d be lying if I said today feels special. If anything it feels much like any other day in this year that’s included a global pandemic, civil unrest and a presidential election that could still very well end with a coup. That is to say, it’s a Thursday. At least I think it’s a Thursday.

I’d love to feel celebratory today, really I would. There’s nothing I love more than gassing up my fellow disabled people. But this year especially I look around and find myself at a loss for something to celebrate. The COVID pandemic has taken so much, especially from the disabled community, so many lives needlessly lost. COVID deaths in nursing homes and other long-term care facilities make up over 40% of COVID deaths in the U.S. Not only that but our current administration has been a threat to disabled people long before COVID ever became a threat.

The government assistance disabled people rely on to survive is constantly threatened, when it’s even awarded at all. Unemployment rates for disabled people remain above 70% when members of the community who have given up looking for a job are taken into account. High school graduation rates as well as secondary education rates remain low. Penalties to government assistance mean many disabled people aren’t allowed to get married and are often forced to live at or below poverty level.

But despite all of this, despite all of the ways society tries to exclude disabled people, we persist. We resist. And we make a way in the world however we can, to the best of our ability.

The disabled community is one of the strongest, most resourceful and resilient communities I’ve ever been a part of. The way we can bond over similar lived experiences, swap advice, even just offer a listening ear is unparalleled. I am so incredibly grateful and proud to be part of the disabled community.

Being disabled has informed so much about how I live my life and experience the world, I don’t know how else to feel except proud. Dammed lucky maybe? Lucky to have been born at a time and under circumstances that meant not only did I survive, but on occasion I’ve been known to thrive. I have the disabled community to thank for so much of that. I am indebted to those that came before me who, unbeknownst to me, made my way easier. I can only hope to do the same for others, today and every day.

Guest Blog: We Are More Than “Suffering” by Diamond Baldwin

(Note: the following post was written by Diamond Baldwin, a fellow content creator. I had the pleasure of writing a post for her blog earlier this year. If you enjoy this piece, be sure to go give the rest of her work some love.)

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As a disability lifestyle influencer, I try to uplift, and inspire others with Spina Bifida but the media is not making my job easy. Time and time again as a kid when Spina Bifida is talked about in the news or on a journalist page, they like to use the word “suffering” to get people’s attention. But it’s more like click-bait for their benefit. They try to make our stories look so bad and spread incorrect facts about living with Spina Bifida. Don’t get me wrong not every story is like this, but it’s still not fair.

When I post the articles on my Instagram I receive responses from my friends with Spina Bifida saying ” Why would they use that word? I’m not suffering”. When I finished reading the article, nowhere did it talk about how well the child is doing currently it only highlights the time that they went through a tough surgery. In one article a little boy with Spina Bifida just wanted to have a good birthday but his journey with Spina Bifida is described as “Suffering”. Nowhere in the interview did his mom describe his journey with Spina Bifida as being “Suffering”.

When it comes to many problems we have as people, it comes down to the media making things worse for us like how a person should look, dress, carry themself. The media glorify people’s hard times. As someone with Spina Bifida, life is not always glamorous but I’m not suffering either. Just like everyone else, I know I will have hard times with my disability but I also know on the other side of that will be great times with my disability.

No one’s life is perfect but a person’s hard times in life should not be the only part that is seen or focused on. People with disabilities are not just their hard times, but it’s also those hard times that build such a strong unstoppable character. The media is making it so hard for us to live our lives with our disabilities, because when we try to make progress with spreading awareness it feels like these articles are undoing all of our hard work.

People with Spina Bifida and all disabilities are amazing people. We are daughters, sons, cousins, doctors, parents, Olympians and so much more. So believe that you are more and you matter.

A Matter of Survival

It took me far longer than I’d like to admit to begin to understand the importance of Intersectional activism. It’s something I’m still actively working on incorporating in all aspects of my disability justice work. But it’s something I should have been practicing from the beginning.

Early on in my activism I would often make false or exaggerated parallels between the issues faced by myself and others in the disabled community and those experienced by other marginalized and multiply marginalized groups. It took me a long time to fully understand, even in my position as a disabled person, my whiteness affords me a privilege not shared by Black, Indigenous and other disabled people of color. From that understanding I have begun to unlearn so much of what I thought I understood about Ableism.

I am beyond grateful to the members of the disabled community, my peers, my elders, my ancestors, who have been part of my education. Their knowledge and wisdom is invaluable to me. I can only hope my actions and the work I do honors them.

Speaking of the work, so much hangs in the balance right now. Not only for the disabled community, but every marginalized and multiply marginalized group. Every minority in this country is imperiled. The current administration has done so much harm to the country as a whole, but in particular to those of us living in the margins of society. We have a chance to stem the flow and begin to undo some of the damage, but we cannot do it alone.

For too long marginalized communities have relied on ourselves and each other to survive. But that may no longer be enough. We need the support of the majority if any of us have a hope of removing the current administration.

The work won’t stop after the election though. There are so many structural barriers that, if you’re a person of relative privilege, you likely aren’t even aware of. There are barriers to education, employment, housing, health care, the list is extensive. But just as they were built, they can be broken down. It’s going to require a concerted effort, but it can be done. And it should be done. Regardless of the cause you’re fighting for, survival is a human right.

Disabled Need Not Apply?

My first job was with an after school program tutoring middle school aged kids. I started a little over a year after I graduated college. That interview was only the second I’d gotten at that point, but I’d applied for at least a hundred different positions.

I’ll admit part of my lack of success was probably due to the fact that I was trying to distance myself as much as possible from the field I’d gotten my degree in. I was also unsure of the direction I was trying to take away from said field. But I have my suspicions it also had something to do with the application process.

On nearly every application there was a section where you could voluntarily disclose a disability. I did this on every application where I was given the option. I figured if I got as far as an interview, my wheelchair was already going to disclose for me so I may as well do it myself.

When I did finally get an interview I made a point of saying how much I appreciated being given the opportunity, explaining briefly how hard it had been to even get that far. I ended up being hired and working for the program for the duration of the next school year. I then got an interim position at a Boys and Girls Club for the summer, with the intention of going back to the program in the fall.

In the words of Ferris Bueller, life comes at you fast. I ended up being offered a different position with a non-profit where I didn’t even get through the probation period before health issues eventually led to my being let go. That was almost four years ago.

This is my job history. It’s not what most would call impressive. But it’s more successful than a lot of disabled people, many of whom try for much longer than I did with no luck. Even more are more talented and qualified than me by far. Still, they can’t get hired.

According to the Bureau of Labor statistics, the unemployment rate for disabled people is somewhere around seven percent, making it comparable to the unemployment rate of non disabled people. But there’s a disparity few people are aware of. Upwards of seventy percent of non disabled people of working age are employed, compared to only around thirty percent of disabled people.

There are plenty of reasons why this might be the case: lower high school graduation rates, lower college attendance and graduation rates, lack of access to transportation, inadequate home health care, the list goes on. All of these reasons stem from systematic barriers caused by societal Ableism. That’s not even taking into account discrimination in the workplace.

Going back to the application process for a second, many of the questions or requirements we view as commonplace are rooted in Ableism. One example is the ability to lift x amount of weight or perform other physical tasks not related to the job. Possession of a valid driver’s license or “dependable transportation” is another. All of these questions are used to weed out disabled people from the hiring process.

If a person does manage to get hired after disclosing their disability, they are often met with resistance or refusal when they request accommodations. Not to mention the, very real, possibility of a person acquiring a disability or illness and being unable to do their job in the same way they had previously. Regardless, it’s not uncommon for employers to claim providing accommodations would create undue hardship for themselves or the company.

All of these barriers and so many others exist when it comes to employment for disabled people. Thirty years on from the passing of the Americans with Disabilities act and the vast majority of the community isn’t even counted in the unemployment rate because they’ve given up the job search. So much skill and talent is being overlooked, so much passion and drive untapped. It’s beyond time things changed.