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.

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.

(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.)

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.

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.

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.

Four years ago, almost to the day this post is being written, I went into the hospital for the first of several stays to deal with a health issue that had begun a few months before. That stay and those subsequent (including a later surgery), as well as the rest of my treatment and recovery process, left me with a lot of medical related trauma I still struggle with nearly daily. I actively try to avoid thinking about that time, but as the anniversary comes around flashbacks become more frequent. One memory that sticks with me is the gown I wore during those first few days.

It was yellow, with a red stripe around the neck. I remember thinking it was actually sort of pretty, as far as hospital gowns went. I mentioned this to one of the nurses, only to be told that was the gown they gave to all patients who were fall risks. One of my numerous armbands had the same warning printed on it. To them that’s what I was, a fall risk.

In the moment I couldn’t help but think how funny it was that I had been labeled as such. A full-time wheelchair user for nearly two decades, my ability to walk is more myth than legend at this point. I’m well aware trying to walk would be disastrous (if comical), so all the reminders seemed a bit much to me.

Of course the warnings weren’t for me, they were for the people who might come in contact with me. They let hospital staff know immediately what I was, or wasn’t, capable of. It remained up to me to explain my needs in full, which by and large went well enough. But the initial visual cues of the gown and armband helped lay the groundwork.

In the years since that hospital stay, I’ve done a lot of healing. I will likely always have scars from that period of my life, both physical and mental, but I hope with time the pain that caused them will fade. In the meantime, I’m left trying to reassess my capabilities and my needs, as well as how best to explain them.

I’ve thought about that gown and its significance often in the last few years. I’ve come to wish I had something like it to convey to the world my fragility, something that explained my needs without me having to reopen old wounds. I’m not sure there’s anything as painful as, accidentally or intentionally, tearing open something that had been on its way to healing.

I am so tired of bleeding to heal. But I don’t know any other way. It’s not as if there are grapic tees or outgoing messages for these situations.

I haven’t really been doing nothing, but panic attacks aren’t polite conversation.

Hi sorry I missed your call, I was dealing with a flashback. It will definitely happen again.

Maybe I’m putting too much emphasis on what I think people’s expectations of me are. That comes from a lifetime of society devaluing the accomplishments of people like me. I’m left feeling like I’m not allowed to not participate, contribute, prove my worth somehow. But I can’t, at least nowhere near consistently; and there’s no easy way to explain that. There’s no easy way to tell people that in so many ways I am still a fall risk.

My ability to function varies. My definition of function varies wildly. I am far from reliable currently, and I’m not sure that’s going to change soon. I’m not sure how much I actually want it to.

I’m writing this from a room I rarely leave, surrounded by comfort objects, anxiety aids and stim toys, most of which show their use plainly. This is my safe space. I’ve healed here. I’ve let myself hurt here.

The thought of venturing too far or too long outside this space is honestly a little terrifying, and would be global pandemic or no. That might change some day. I think I probably need it too. There are things I miss about the world, people I’ve been too long without. Not to mention I miss creating trouble away from my keyboard. But for now I’m still a fall risk, and the world doesn’t know how to catch me.

There’s a, possibly misattributed, Vonnegut quote that talks about not letting the world and pain make you hard and bitter, continuing to see life as beautiful. I am learning, better every day, to find the beauty in this life. And while it may not look like it at first glance, I am a softer person than what I project to the world.

Despite this, I am regularly, and increasingly often, told I am bitter, that I have a dim view of the world, even that karma is going to collect on my negativity one day. In fact all of these comments came from a single comment made recently on a social media post where I pointed out Ableism. In another recent interaction, I asked a question about the accessibility of a local business and was told to shut up by another commenter. In interactions with people I’m closest to I’m often cautioned against sounding mean or harsh, told not to write while I’m angry. In her birthday message to me, my mother told me to be gentle with myself and the world.

I recognize the difference between strangers’ comments and familial advice. I grudgingly suffer one, and gladly welcome the other. But they both reiterate for me the fact that non disabled people lack an understanding of what it’s like to live as a disabled person. They don’t have the experience of existing in a world that constantly reminds you it wasn’t made for you. All the while society force feeds us the idea that we should be grateful for any little crumb of equality we get. So yes, perhaps I am bitter.

I’m bitter I can’t even get through the news, the latest movie, or even a YouTube video I was enjoying, without encountering Ableism. What can I say, I get a little tetchy. When my every day is a count down to the next time I am discounted, forgotten or “othered”, I have found I acquire a certain bitterness.

But I can’t bring myself to apologize. I can’t apologize for the way the world has made me, any more than the world will apologize to me for its treatment of myself and others like me. I can only continue to do the work of dismantling Ableism where I find it, being gentle where I can. And where I can’t, I only hope those around me learn to appreciate a little bit of acquired bitterness.

It’s a common trend to associate people who are disabled or chronically ill with the term “warrior”, and to describe their life with the condition in question as a “battle”. This is especially prevalent in news stories about people who have died from cancer for example. It’s also sometimes said that the person lost their battle.

The same happens in regards to Spina Bifida. I cannot count the number of times I’ve seen a person with Spina Bifida referred to as a “Spina Bifida warrior”. It’s also common for those with Spina Bifida to adopt the descriptor for themselves. That’s all well and good. I firmly support a person’s right to refer to themselves and their illness or disability in whatever terms they are comfortable using.

For me though it’s never made sense. Thirty years of living, upwards of fifty surgeries in that time, and I still do not see myself as a warrior. I can’t. Spina Bifida isn’t a war I’m fighting; it’s the only life I’ve ever known.

As I said I’ve had upwards of fifty surgeries throughout my life, countless tests, and blood draws on top of that. But even the most high risk surgeries I’ve undergone haven’t been a battle. They were necessary for my survival and quality of life.

Being disabled has meant that I’ve spent a fair amount of time fighting other battles though. I’ve become practiced in combating ignorance and discrimination, adept at identifying and dealing with Ableism. In this way I’ve been more at war with the world around me than my disability. In that same way my body is not a battlefield, it’s my home.

Through all the ways it’s changed, that I’ve changed, grown, broken down and been built back up, my body has been my home. Even on the days when pain lays me out, when my eyes won’t focus or my stomach is throwing a fit, this is where I live. This is where I will keep living, especially on the days I think about not. Because even on those days my home keeps me safe, sees me through.

So no, Spina Bifida isn’t my war and I am not a warrior. I am a disabled person living the only life I have, the best way I can. I love my body for its strength and try to have grace for its weakness. In a world that makes both of those things painfully difficult, I’ll take those small victories.

un·prec·e·dent·ed

/ˌənˈpresədən(t)əd/

Learn to pronounce

adjective

never done or known before.

“You keep using that word. I do not think it means what you think it means.”

— Inigo Montoya, The Princess Bride, on Vizzini’s use of the word “inconceivable”.

I honestly have half a mind to post the above without any further explanation. But in case any is needed, allow me to give some context to my thought process. In the past few months I have noticed increasing use, or rather misuse, of the word unprecedented to describe the state of the world right now. While I would agree 2020 has been stressful, filled with loss and ignited in many a fire for justice and change, none of those things, or the events leading to them are exactly unprecedented. 

Take the global pandemic, no seriously someone take it away. Pandemics, and many other sicknesses, are cyclical in nature. There have been several occurrences throughout history of illness running roughshod over mankind, similar to the way COVID-19 has ravaged communities across the globe. The death tolls then were also astronomical and nothing resembling herd immunity occurred until well after the number of deaths had climbed and when possible a vaccine was developed.

My point being, as horrible as this has been to witness, as devastating as the continued loss of life is, history told us this was possible. Some countries heeded that warning better than others. Regardless it is not so much unprecedented as a devastating matter of course. 

Another, no less devastating occurrence has been the fires, earlier this year in Australia and then, as happens fairly regularly on the west coast of the United States. At least in regards to the fires out west they are not unprepared. Evacuation plans and emergency planning remain in place to some degree. But always the damage seems to be far greater than anticipated. Fire and rescue struggle for weeks to maintain and mitigate the damage. Then communities are left with rebuilding. 

On top of the more nature based hardships this year, there has been a marked increase in protests against another that is purely man-made. Black Lives Matter protests have been nearly ongoing since the beginning of summer in response to the growing number of Black people routinely killed by police. This push back against the blatant racism and violence experienced by the Black community in America has seen support all around the world, though at home changes are slow to be made and the need for justice remains unmet. 

I don’t mean to in any way trivialize any of these issues. Each are devastating and life ending, but apart they are not unprecedented. Disease has existed as long as man, fire longer than that. Racism and hatred are purely man-made, but no less deadly. 

What I would say is unprecedented, something that all of the examples I’ve listed have in common, is their increased affect on disabled people. Evacuation plans rarely take disabled people into account. Shelters are rarely accessible or capable of serving medically fragile people. Because of this we are easily the most at risk during natural disasters. 

When cases of COVID-19 first started being reported experts said it was likely to only adversely affect the elderly and people with preexisting conditions. Public officials and news organizations clung to that. Even now with the death toll surpassing 200 thousand people are saying they’re not worried because they’re healthy, not realizing the sheer number of people they are essentially condemning to death. 

As far as police brutality is concerned, Black disabled people are disproportionately involved in altercations with police resulting in injury or death. In the case of injury, lasting effects often become disabling so regardless of any preexisting disability, people become disabled through police brutality. 

Full disclosure, even I have misused unprecedented here. Because Ableism is far from unprecedented. It has roots back to the birth of white supremacy and has maintained just as long.

So here’s a question: if disease, destruction, and white supremacy aren’t unprecedented, what’s stopping us from guarding better against or getting rid of them completely? In regards to COVID, social distancing, wearing a mask et cetera. Putting real actionable plans in place to protect everyone during a natural disaster. Work to dismantle the societal systems allowing white supremacy and Ableism to thrive. The work has already been started, let’s make sure it continues.

Hey! It’s me, your strong friend (child, sibling, coworker, neighbor). Sorry I didn’t get back to you yesterday (last week, last month, six months ago). I’ve been (really busy, dealing with a lot) struggling honestly. Wait, that part wasn’t meant to be out loud. Well I guess we’re doing the honesty thing huh? Ok, here goes.

Sometimes, ok a lot of the time, I struggle. But I don’t want you to know when things are hard. Well, that’s not true. I feel like I’m not supposed to show when I’m struggling. Because I am the strong friend. I’m the one people come to when they’re struggling, the problem solver, the shoulder to cry on.

But can I tell you a secret as your strong friend? Sometimes it feels like all I do is struggle, never making progress, never moving forward. Objectively I know that’s not true; progress is hard to measure and it’s not always obvious it’s being made. Regardless, instead of reaching out when I feel stuck, I hide.

I convince myself hiding and struggling is a better option than reaching out. If I don’t reach out I can’t disappoint myself and the person helping me when (not if) I can’t do what they suggest. Also, because I’ve withdrawn so much, that person likely has no metric of what I’m currently capable of. So that thing they suggest in good faith might genuinely be Mount Everest to me. But being honest about my current capabilities is also something of a Mount Everest, so I withdraw further.

Are you getting the picture? That’s right, I’m a disaster. And you call me your strong friend. No wait I did that. Why did I do that? That’s clearly not me.

It’s probably you though. If you’re my friend, I know it’s you. And if we’re not friends you’re probably still fantastic, smart, funny and a million other wonderful things. Because we’re all made up of lots of different parts. We’re our passions and our fears and even our struggles.

Sometimes our struggles may overwhelm the rest. That’s ok, it won’t last forever. Take the time you need to become whoever you’re becoming. Lean into the awkward and the uncomfortable. Embrace the you that’s trying to be. And never forget there are people out there ready to catch your hand when you reach out, like me, your (sometimes) strong friend.