Recently it’s come to my attention that many of the views I hold may be seen as radical by some. This was news to me, but I’m curious if others might shed some light on the subject for me. I’ll start by sharing a few of these so called radical beliefs.

I believe everyone has certain rights, things that they are entitled to simply by virtue of being alive. Some examples of things I consider rights: physical safety, food, water, financial security, and health care. That’s by no means an exhaustive list. I also believe people are entitled to love whoever they love, build a family and practice their chosen faith. They should also be able to live without fear of persecution based on their sexual orientation, gender identity and expression, race, disability or any other inherent part of their identity. Oh and before I forget, a person’s worth is not inherently tied to their ability to perform labor.

None of these things seem to me to be terribly radical beliefs. But as I get older I’m beginning to understand that they are down right incendiary to others. It’s almost as if the freedoms that ought to belong to everyone have invisible qualifications attached. It’s almost as if unless you act a certain way, look a certain way, sound a certain way, they’re not your rights to claim; as if the conditions under which you were born define where you can go, what you can do, which dreams you can achieve.

We’re seeing every day the comparative worth placed on skin color, on wealth and status, on other people’s definitions of quality of life. The measuring of that worth has come at a steep price. It is the death toll of inequality and every day it climbs higher.

While I’m at it, here’s one more radical belief for you. I believe it is high time we demand change. The cost was too high to begin with, and it has been more than paid. Systemic violence needs to be put to an end. Life threatening social inequality need to be rectified. The disenfranchised and the marginalized deserve to finally enjoy the rights and freedoms they’ve been routinely denied. If believing all that makes me a radical, so be it.

No one ever told me grief could shrink my world. Growing up I learned all about how technology and travel had brought all the corners of the world closer. In many ways the speed with which we can now travel and communicate has literally shrunk the globe.

But no one ever mentioned this. No one ever said a person’s absence could be felt nearly as deeply as their presence. I was never taught that loss could so completely warp my world view that there doesn’t seem to be room for anything else. I have found however this is precisely the case. The world just feels smaller somehow.

And not small as in close knit and warm. Not the kind of small like a family dinner or an afternoon with a dear friend. This isn’t warm and comfortable. This is cold and dark. It’s empty and stiflingly close at the same time. I don’t know which way is up, but it hardly matters. I’m rooted to the floor.

Maybe it has to do with the near constant stream of loss we’ve been enduring lately. With this sheer magnitude the collective quickly becomes personal. It’s at the same time completely individual and intrinsically shared. And it is heavy, so heavy some days the only sensation I can register is fragility. I am brittle with grief, and sadness, and anger at the knowledge that it didn’t have to be this way. None of it did.

But for reasons beyond my understanding, and due to forces blessedly out of my control, I remain here, in this moment. I remain, to continue reaching out through the small, dark stillness in hopes of finding a hand to grasp on to. Maybe it’s your hand I’m looking for. Maybe you’re looking for mine. In any case, I hope we find each other. I don’t want my world to feel this small anymore.

Greetings friends and followers of Bif In Medias Res! Apologies for being gone so long. There has been a lot going on and I’ve been busy getting things in order. But I wanted to take an opportunity to explain everything that’s happening so you’re along with me for the ride.

First, I recently collaborated with fellow content creator Diamond Baldwin and a post I wrote is currently up on her blog. Her post will be shared here when it is complete. In the meantime, go check out her other projects !

Next, if you aren’t already aware, the blog now has a Facebook page . Updates will be posted there rather than my personal page from now on. I will also be interacting and sharing disability and activism related content to the page. You are welcome to like and follow as well as share the page with anyone who might be interested in it. I can also be reached there through messenger as well as at Bif In Medias Res’ email .

Also, I have created a linktree where you can find links to my PayPal, Twitter and other various and sundry items of interest. I thought it was important to have a centralized location for all of my various accounts. My PayPal is also still located on the About page for anyone who would like to support my work.

Lastly I’ve been doing some restructuring on the site. Along with the About page, the menu now includes a contact form and information for anyone interested in hiring me for writing, speaking or consultation regarding issues related to disability. I have always been passionate about using my skills and experience to help others and I think this will be a great opportunity for me to do that.

I think that about wraps up all the new things happening for Bif In Medias Res. There are still details to iron out and changes to make but I’m really excited to take things in a new direction. That being said, I still plan on being active here and updating as often as I can. Thank you to everyone who has supported me thus far. It truly means so much. Be well dear ones!

(Poem courtesy of one of the many lessons I’m learning at the weekly Crip Camp sessions)

I used to think to be remembered
one had to do big things,
make grand gestures.
As if that was the only way
to have an impact.

But now I realize that’s not the case.
It’s enough to be a small part of something bigger.
Supporting roles are just as important as the main players.

We can’t all move mountains, especially not alone.
But movement is movement no matter how small.
Focus on moving forward, even slowly.

It’s ok if what you do isn’t earth shaking.
Maybe you won’t be the force that breaks the dam.
Go ahead, be a ripple in your small pond.
You never know how far you might reach.

“Spina Bifida is the most common permanently disabling birth defect still compatible with life”

The above quote has been rattling around in my head almost as long as I’ve been learning, and teaching others about Spina Bifida (and disability in general) so roughly since my teenage years. It’s kind of a lot to digest. If it’s new to you as someone with Spina Bifida, or if you’re completely uninitiated, I’ll break it down for you.

Spina Bifida, literally “split spine”, is a neural tube defect present at birth in which a portion of the spinal cord is exposed to some degree. In my case, Spina Bifida (spine-uh bif-id-a) Myelomeningocele (milo-meh-ninja-seal), my spinal cord was fully exposed through an opening in my back between my fourth and fifth lumbar. I know that’s heavy. Pause here if you need to.

As for the rest of the quote, “still compatible with life”, means Spina Bifida is the most severe birth defect that is survivable to adulthood. These are words I have been sitting with (no pun intended) for years. At first, I’ll be honest, they terrified me. I couldn’t wrap my head around my diagnosis being fatal. Past that, how was it I avoided that fate? And why?

The latter of these questions wouldn’t come up until several years after I’d first found the quote. I didn’t spend middle school grinding about my purpose on this earth. That’s what college was for!

Sarcasm aside, these words have meant different things to me throughout my life. I went from being completely unnerved by the revelation, to hell bent on making sure my life meant something  to somebody. Recently I realized my understanding of the quote has changed again.

I now identify very strongly with the “still compatible” bit. I won’t belabor the details of things I’ve written about in other posts, but suffice to say I’ve struggled the last few years. I can’t go so far as saying I was ever actively suicidal. But the idea of just not existing has been extremely attractive on occasion. Thankfully I am in a much better place at present (at the time of writing, a literal blanket nest actually). Because of the energy and efforts I am putting toward staying in my current state, I can honestly say I believe the quote. I am still compatible with life, and I have every intention of keeping it that way.

For the better part of my formative years and on into my adult life, I have often used the phrase, “I’m not Autistic, but…” and then proceeded to follow it up with something that made me feel a kinship with my Autistic peers. It was, at first, my attempt to prove commonalities existed between us: them, an Autistic person, and me, neuro typical. Early on, say mid to late teens, I legitimately saw this as an ok thing to do. And to my memory no Autistic person ever made me question the decision.

As I entered college and began to learn more about the mental aspects of my disability, I came to the conclusion that, because of my Hydrocephalus, I was what some would consider neurodivergent. Again I fell back on that phrasing, “I’m not Autistic, but…”. There were similarities, I couldn’t deny that. Executive dysfunction, sensory processing issues (what I’ve often referred to as my inner noise ordinance violation), but they were just that, similarities.

As my supreme good luck would have it, I ended up marrying an autistic individual. Before we got married we dated for several years and got to know each other almost as well as we knew ourselves. He was still learning about his diagnosis and how it impacted his every day life, and my role in that was support. But again similarities crept up that I couldn’t ignore, and there again was that phrase, “Ya know, I’m not Autistic but…”. He was gracious to a fault and listened to my experiences, not necessarily agreeing or dismissing.

Many of my friends at this time did the same. I’ve lost count of how many of my college friends first heard about executive dysfunction from me. At that point I was merely trying to share what information I had and hopefully find ways to better cope with stresses in my own life.

It wasn’t until after we’d been married a few years that my husband posed the question, “You say ‘I’m not Autistic but’ a lot, have you ever considered that you might actually be Autistic?” Y’all. It was as if the evidence board in my brain suddenly meshed together. All of the strings twisting back and forth around push pins started to form a picture.

That was all it took. I dove into the internet and researched assessment after assessment and dozens of symptom lists. Most importantly, I started thinking back on all the instances of me saying, “I’m not Autistic but…” and I realized they almost all correlated to a symptom of Autism: sensory overload, sensory processing issues, aversions to textures, attention to detail, executive dysfunction, the list goes on.

My next step was to seek out the Autistic community online and to consult with friends who were diagnosed Autistic. It was pretty much unanimous agreement from those who know me, I’m likely Autistic. Even those that don’t know me agree that Autistics have a knack for recognizing other Autistics.

At this point I’ve not sought a formal diagnosis and I’m not sure if I will. Right now it is enough to explore on my own. It’s already made an immense difference in my daily life as far as approaching things with my abilities and boundaries in mind. I’m being kinder to myself, giving myself more grace. And as always, my husband’s support has been vital. I’m so grateful for his encouragement to get to know myself better so that I can be the best version of me. And I guess now I can say, “I am Autistic.”

My post for ADA 30 has been in the works since ADA 29. I started thinking about what I wanted to say just a few days after the anniversary, because the thirtieth anniversary of the Americans with Disabilities act is a big deal. The ADA was the legislation that was supposed to give my community freedom, equal rights. It was supposed to make it possible for us to fully participate in society.

But as I started thinking over what I wanted to say about the upcoming anniversary I realized very few of those goals have been reached, at least not fully. Disabled people still face barriers to education, employment, fair wages, healthcare, housing, marriage and more. We are penalized for having assets over a certain limit. Many are forced to choose between receiving necessary healthcare and getting married. And those are just the ways the government discriminates against us.

Disabled people are judged unfairly, by strangers and those closest to us, for nearly every action we take. We try to work, go to school or both, we’re not really disabled. If we aren’t able to work or continue our education, we’re not trying hard enough. If we choose to have children we’re seen as incompetent, negligent or even abusive for forcing a child to grow up with disabled parents. But choosing to not have children means dealing with comments about how easy life without children must be. This is of course when we’re not fielding asinine questions about our ability to even accomplish the physical act of sex/having a child.

All of this is and was the reality for disabled people every day before and since the passing of the ADA thirty years ago. To put that into perspective, I’ll be thirty in September. I’m part of what we call the ADA generation. I’ve reaped the benefits of that legislation every single day of my life.

Here’s a quick rundown of how that went: I fought like hell through over 50 surgeries from birth, through my public school career (mainstreamed K-12), then graduated. I attended college and graduated with a bachelor’s of arts (because funnily enough a BS in journalism wasn’t offered). Then I got married to my favorite human and we began life together. I soon lost my government assistance (supplemental income and insurance). We were at that time living in an apartment that was barely capable of meeting my access needs.

When we moved we scoured the area for accessible housing we could afford (just as we’d done with the first apartment and as we would do with the house we live in now). We’ve been married six years and I could probably count on both hands the months we’ve been able to cover our expenses on our own. Oh, I forgot to mention I got (some of) my assistance back, but the income cap means my husband makes just above minimum wage.

I say all that to say, I am lucky. We are lucky. The support of family, friends and countless others throughout the years got us where we are today. There are so many people in the disability community who are in much different circumstances, even thirty years after the passing of the ADA.

Merely existing as a disabled person is a daily struggle, and that’s especially true right now. Watching what my community is going through in the face of the COVID-19 pandemic scares me to death. It scares me and makes me angry. There’s been so much preventable loss of life (a third of cases are from long term care facilities), so much blatant disregard for the disabled and aged communities. Essential workers (some of whom are disabled themselves) are being forced to endanger their lives for the sake of the economy.

In the face of all that, what is there really to celebrate? Not the government, not the enforcement of the ADA or the betterment of disabled lives, so what are we celebrating? Well, hear me out, what if we celebrated us? What if instead of marking the thirtieth anniversary of the ADA for some false sense of achievement, we celebrate our disabled existence?

I for one think there’s plenty about the disability community worth celebrating. Some of the smartest, strongest, bravest people I’ve ever known are disabled. It makes me incredibly proud to share a community with disability activists and leaders who have fought and continue to fight for our place in this world. Their dedication and steadfastness have fueled my own journey in disability justice. And then there’s me. That’s right I said it; I’m celebrating myself, for at the very least continuing to exist when I’d rather not.

Disabled people are always being talked about as “pretty in spite of being blind” or “independent in spite of being a wheelchair user”. Well maybe this is the year we celebrate ADA in spite of how far we still have to go. So who’s with me? Shall we celebrate in spite?

“Self-knowledge is a rare and self-sustaining prize. Hard-won and elusive. The greatest warriors are those who know when to ask for help. Pride can blind a man or a gargoyle. Denying him the power of living the truth.” -Goliath, “Gargoyles”

It feels strange to admit this given everything going on in the world right now, but I am so happy. What I mean is I am so content with myself and proud of the person I am. It’s taken me a long time to get to this point and I feel like especially in the last year I’ve grown and changed so much. It seems almost cruel in light of our societal circumstances. But nonetheless it’s true. It feels like I was just on the verge of being a person again after so long, and then the world started falling apart.

I’ve written before about my experience with depression and anxiety,  especially after my extended period of health issues. After my last shunt malfunction it was as if my brain was a completely wiped computer. In the process of building myself back up I dealt with mental health issues I had been able up to that point to largely ignore. As you can imagine undoing so much damage, self inflicted and otherwise, was a struggle. But I finally reached a point where I was able to realize I needed help and then ask for it.

To put it bluntly I never thought I’d get here. That’s mostly because I didn’t realize I had anywhere to go. As I mentioned the mental health issues I’ve been working to address more or less went ignored during my college years and before. All of my focus was on doing my work and just living my life to the best of my ability. I thought that meant I was growing as a person, and in some ways it did.

But you couldn’t have convinced me I’d end up learning so much about myself in the next five years. From where I sat I had just spent five years of college doing what I thought was self discovery. And like I said I was right, sort of.

The end of high school and all through college allowed me to grow as an advocate and activist. And I’m forever grateful for those experiences. They were some of the happiest times of my life. They showed me what my passion in life is and introduced me to a wider disability community.

But it’s been these last five or so years, and even more so the last year and a half that have shown me who I am outside, or maybe alongside, being a member of the disability community. I now have names for parts of me I couldn’t accurately describe before. It’s explained parts of my past I didn’t fully understand. I feel like I finally have a complete picture of myself and I like what I see.

Regardless of which aspect of myself I learned about, neurodivergence, sexuality, gender, the process of gaining self knowledge has involved a lot of research. I set out to find language to describe my experiences and people who could relate to me, much the same way I did when first making connections with the disability community. Social media has been crucial for this. My online communities have been so welcoming and open as I continue to discover more about myself, and the relationships I’ve gained have become invaluable to me. The support I’ve received from my online friends and a few of the people closest to me has been so incredibly validating.

Having this level of self awareness is so freeing. But it also makes me want to do even more work on myself. As content as I am, I know there are areas of my life that need improvement. It may take me a while, but for the first time in a long time I feel up to the challenge. I finally feel like I can take on my life on my own terms.

“Nothing about us without us” has long been the rallying cry of the disability rights movement. The sentiment behind it, that no law or legislation, nothing that infringes upon the rights of the disabled person, should be acted on without the input of the group being affected. But I’ve come to apply it in both a much broader and narrower sense. On one hand I see it as referring to every aspect of society and meaning that disabled people belong everywhere non disabled people are. On the other, I apply it individually to my own life. Choices that directly affect, or only affect, me should not be made without my input. I think both of these views are in keeping with the original spirit of the motto.

It’s only been recently however that I’ve given more thought to the “us” in question. I’m not shy about admitting I’ve struggled to find my space in the broader disability community, and I often doubt my ability to make much of an impact. But I do recognize that I am part of the “us”.

I also readily admit to being bolstered by disabled advocates and activists who’ve come before me. The work of my predecessors has been vital to my growth as an activist. I treasure the lessons I’ve learned from them, the lessons I am continuing to learn. And the same can be said of my disabled peers. Being a part of this community and making connections with people doing the work I hope to do some day is an absolute gift. This is I think what makes it so difficult when one of the activists I’ve learned from, in some cases for years, whose work has made such an impact on my life, dies. It’s as if there’s suddenly this void, something so completely lacking it feels impossible to fill.

The first time I can remember being aware of this feeling was when Stella Young died. I was devastated because I’d only been aware of her for a year. I was still a baby activist, to quote one of my best friends. So her death hit me hard, never mind that I didn’t know her personally. Her story, her experience impacted me and does to this day.

There have been others through out the years, and many more recently it seems. Carrie Ann Lucas and Ing Wong Ward come to mind, people whose lives became legacy much too soon. There have been times when I’ve run through names and faces in my head and morbidly wondered who from the community we would lose next. It never gets easier and you never become numb to it. One day there’s just one less of “us”.

Most recently I was made aware of the death of an Autism activist I’d first started following in college, Mel Baggs. While I’d been following hir blog for the last year or so, I hadn’t been up to date and hir death came as a shock. Here was someone who, much like Stella Young, had influenced my entrance into the wider disability community and to activism in general. Sie was someone I had looked up to and admired and now sie’s gone. Another void left, impossible to fill.

And maybe I shouldn’t put it in those terms. My point being, the impact people have on the world is that they cannot be replaced. Those of us who are left can try to fill their shoes, continue their work, but not for the sake of filling the void they left behind. If anything it should be to honor their efforts and how far they brought the community as a whole just by being part of it. That’s an impact each of us can strive for. The ranks of “us” may shrink, but I firmly believe our impact will only grow stronger until “nothing about us without us” is realized.

I have a strange relationship with pain. This is partly due to the fact that when I’m experiencing pain I often stop breathing. Either I take a deep breath and hold it, or blow out all the air in my lungs. This never causes any lasting harm; I haven’t ever passed out doing this. My lungs always eventually remind me how much they like oxygen and I start breathing again.

I’ve noticed increasingly over the last few months I’m feeling breathless a lot. It’s almost as if my body is trying to prepare me to dive deep underneath or climb over whatever is causing me pain. The thing is though, pain doesn’t work like that.

Whether it’s physical, mental or emotional, sometimes pain just demands to be felt. That’s how it feels right now. The state of society, my country, the world, it hurts. It hurts and it seems like there’s nothing I can do but sit with the pain. But I don’t have to just sit with it; like any other pain, I can at least attempt to manage it.

Those of us who are familiar with experiencing physical pain in the long term likely have some form of a pain management routine. Hopefully that routine mitigates, if not completely deals with, any physical pain. But regardless, each individual is the best judge of what methods work best for them, especially in regards to any pain relief.

Unlike physical pain, which most of us experience in some form or another to varying degrees of severity, mental and emotional pain may be unfamiliar territory for some. Especially in uncertain times like these, it is not uncommon to experience symptoms of emotional and mental distress (heightened anxiety, periods of depression, irritability, changes in sleep and eating habits etc). And if you already deal with mental health issues, current events undoubtedly have you dealing with more intense symptoms than you may be used to. Whichever category you fall into, know it’s ok. Your feelings are valid.

For those who are familiar with mental health issues I won’t belabor the point too much, but there are some basics that might be of use to you newly initiated. These are all relatively simple and straightforward. Maintaining a balanced diet; getting enough sleep; exercising; and practicing hygiene and self care have all been shown to help some people struggling to improve their mental health. But as anyone with long term experience with mental illness can attest, none of these are a cure-all. Getting eight hours of sleep and five servings of veggies a day won’t magically correct your brain chemistry.

You may need to talk to your doctor about starting on medication, seeing a therapist or a combination of the two. Try as many treatment options as you are able to until you find what works best for you. And remember these might not be a cure-all either. It may take a combination of therapy, meds and the suggestions listed in the previous paragraph to get you where you want to be. That is completely ok; don’t lose hope.

Speaking of hope, you probably realized right about now that all of the things I’ve mentioned as being helpful for improving your mental health are either being made harder or completely impossible right now. And you’re right. Given the restrictions in place and scarcity occurring many places, it is going to be harder than usual to make sure our mental health needs are being met. For many marginalized communities it was already difficult before the idea of a global pandemic was even on anyone’s radar. And in the era of social distancing access to healthcare, proper nutrition and other necessities might look a little different than you’re used to, but that’s where community care comes into play.

For those unfamiliar with the term, community care is just what it sounds like: caring for your community members, making sure their needs are being met and they’re being supported in the ways they need to be, and you’re allowing them to help you when you are in need. It’s making connections and sharing resources. It’s supporting those around you so that you’re all better able to survive and thrive.

We are living in uncertain, unprecedented times. So much feels up in the air. Plans have been undone, special moments changed or completely lost. This leaves an impact that can be hard to deal with. Community care can be an invaluable tool in coping with so many changes and so much disappointment.

So take this opportunity to lean on your community. Call your Nana. Text your best friend. Video chat with your two year old nephew. Be there for them and let them be there for you.

This is also a great time to remind yourself of the things that give you comfort, the things that make you feel good, and indulge in them. Watch that movie you loved as a kid for the 7000th time. Put that song you can’t stop dancing to on repeat. Cook, paint, sew, sleep. Do what replenishes your soul.

No one is going to be perfect at handling this situation we’re in right now. Allow yourself space to feel and grace when you fail. That’s the only way to get through this. One day, one minute, one breath at a time.

Remember that I’m proud of you. I love you. Be well, dear ones.