I’m Officially Disabled Now; Where’s my Prize?

Update on the Sydney Beers Story–Remember? The Wheelchair being Pushed Down the Stairs? Anyone?

I really don’t follow hockey. Definitely not NCAA hockey. But Carson Briere’s name has popped up on my various news notifications for the last month or so, ever since the wheelchair incident. So I saw the news that he’d been removed from the Mercyhurst University hockey team early in the week, and I didn’t really think much about it. I’ve already shared an essay detailing how he pushed someone’s unoccupied wheelchair down a flight of stairs, robbing someone of their only means of getting around. And about justice and the lack of actual accountability demonstrated by Carson Briere, his father, (former NHL player and current interim manager of the Philadelphia Flyers,) and also from Mercyhurst University.

Anyway. Carson Briere entered the NCAA transfer portal. By entering the transfer portal he indicates that he wants to transfer to another school, and retain all of his athletic eligibility to continue playing at the college level. (The NCAA limits student-athletes to four years of eligibility, with various exceptions for things like injuries or military service requirements.) This is the second hockey team that Carson Briere has been dismissed from for his behavior, and not his playing ability. He was dismissed from the Arizona State University for a “violation of team rules.” No one has said what rules he violated last time, although on reddit and other sites, there’s a lot of talk about the toxic culture of hockey, and suggestions that it may have been a violent fight with another team member.

What is Important about this Story?

2 Rules of Writing isn’t a sports website, though, so why am I stuck on this story? Honestly, I think it’s about justice. This guy already got a second chance when he transferred from Arizona to Mercyhurst. Without losing eligibility. Without losing his athletic scholarships and all the privilege that comes with being a Division I student athlete. Obviously there are benefits related to academics and training. But there’s also media exposure, spending money, free tickets, entertainment expenses, extended insurance to cover his health during (and sometimes after) his time on the team, gear (not just what’s actually needed for playing, either) and more. And that’s not even touching the way that sometimes the behavior of elite athletes is overlooked by their schools. (It wasn’t overlooked in this case, but this was the exception.)

I’m usually a fan of second chances, at least when people actually take responsibility for the harm they caused. Restorative justice, where the victim/survivor of the crime has input into the penalties; and the penalties are aimed at fostering a sense of responsibility in the perpetrators. Restorative justice is based in part on the idea that people can actually learn from their choices and their actions. But giving Carson Briere a second chance would not be restorative justice. Maybe he’s been privately penitent in a way that’s of no use to anybody, but in public, we’re talking about someone who has done a pretty outstanding job of showing how not to learn from your fuck-ups.

What Does this Story Tell us about being Disabled?

Okay, a privileged hockey player screwed up big time, so what? Carson Briere’s latest trouble started when he shoved a wheelchair down the stairs. So a disability story. Let’s center the victim for a moment and remember that Sydney Beers is the one who we should be more interested in, and paying attention to. She’s the one whose name we should be remembering, not what’s-his-name. This isn’t a story about a college athlete doing something horrible, it’s a story about a disabled person being assaulted by an able bodied person who happens also to be an elite college athlete.

And that person–that athlete–not really understanding that what he did wasn’t just property damage, but it’s more like breaking an able-bodied person’s legs in the effect it has on their life. And part II of this story–the prospect of this athlete switching to a different school and leaving the consequences of his actions behind yet again–broke at the same time I happen to be dealing rather intensely with some more of my own feelings about my life as a disabled person. About my transition from able-bodied to disabled. Internalized ableism stuff. 

I Might… Leave Rehab?

This latest episode has been brought on by a couple of net positive things. I had my most recent care plan conference ( a quarterly meeting with a care team here in rehab to talk about how I’m feeling, about my goals and plans, and how things are going) about a week ago. And there was some talk about planning for what’s next. No definitive date, but definitely some progress in that direction. We’re starting to talk about me getting out of here. Still a little frightened, especially because Florida is so casual about COVID precautions, and I’m still at high risk for COVID complications. There’s still physical rehab work to do before I’m ready to really actually maybe get out of here. More walking. More practice getting around on my own with the wheelchair. Opening doors is hard! I’ll get there, eventually. 

I’ve got psychological work as well, to make sure that I’m mentally prepared to leave a care setting after all these months. Returning to the real world after a near death experience is enough to trigger PTSD on its own. Returning to the real world after a near death experience and a long term stay in rehab, which means giving up the high level of support that I have while in this facility, serves up that PTSD with a large helping of anxiety. To be able to have real, less-than-hypothetical conversations about what comes after being here feels incredible, though. When it isn’t too scary, anyway.

So that’s one thing. I might finally get to leave.

I’ve been Disabled for a While… So What Changed?

The other thing that happened recently is that my disability application was approved. Which means that, according to the government, I am officially disabled.

The context is that, when you’re disabled, that doesn’t automatically wipe away all of your other issues. I’m still programmed from childhood to minimize and shush my own needs. Even after using a wheelchair and walker for a few years now, I still try to convince myself that I’m really not that sick, or that things really don’t hurt that much.

Consciously, I know that all of those things I’m telling myself are a truckload of excrement. But the rationalizations continue. Apparently, the US government does not share my neuroses because disability application was accepted on the first try. Which doesn’t happen to the great majority of applications. I was absolutely prepared to be denied the first time I applied. That’s one of those things that I’d been warned about by so many different people. To expect a denial the first time I applied, to be prepared to get an attorney involved to help the process along, and for it to take a while. Years even.

But it didn’t. It took a total of about five months from the time my initial application was submitted, to the time I received word that a decision had been made. And that was kind of shocking. They requested supplemental information a month or so after my initial application. I returned that a few weeks later, and then, nothing, until I got my approval letter. I don’t think they took into account how much more difficult they were making it for me to tell myself that I’m not that sick; that it doesn’t hurt that much.

Working with a Palliative Care Nurse is Hard

When I added a palliative care nurse practitioner to my health care team, I had a lot of strong feelings to work through. There’s been a lot of grief and fear in this whole process. Learning to live with the way life has changed as I’ve had to deal with more pain is really hard. The list of things that have become more complicated or that I can no longer do seems endless. Simple things like making a cup of tea for myself or wandering through a yarn store and touching all of the yarn. Getting my own groceries or going out to eat. Going dancing. But being granted the official government stamp of approval as a disabled person is different from adding palliative care.

Bringing palliative care on board forced me to recognize some things about not getting better that I had avoided thinking about before. The palliative care nurse bluntly told me that, if my pain level had gradually crept up from its usual level of three (“sometimes distracts me”) or four (“distracts me, can do usual activities,”) to four on a good day and five on a typical day (“interrupts some activities”), then that might just be my new normal. It was not easy to hear that. Living with pain and fatigue all the time hurts physically, but it’s exhausting. Because of the emotional energy involved in dealing with it. Because of what it takes to manage the pain–the extra care that has to be taken just to do regular things like cooking or showering, and then managing the medications and the doctors appointments. It’s a lot. 

Being Disabled Means Just Trying to Take it One Pill at a Time

Before I even look at my “as needed” pain medications (which can be up to eleven pills in a day,) I take anywhere between eighteen and twenty two pills a day, at five different times (wake up, after breakfast, midday, dinner, and bedtime.) Not only do I have to keep track of what to take and when, it’s also which ones can’t be taken with food (an hour before or two hours after eating,) which ones must be taken with food or they send me to the emergency room because the cramps they cause are so bad they make it difficult to breathe, which ones have to be combined in order to work more effectively, and which ones absolutely can’t be combined.

There’s also the bloodwork that has to be done every six to twelve weeks to make sure that there isn’t too much of this or too little of that. And, of course, any subsequent medication changes based on the results of those tests. Oh, and those “as needed” medications? There are three of them, one every eight hours, and the other two every six hours, but not at the same time. I have to take them three hours apart.

Now Try it with Brain Fog

Now imagine doing all of that during a fibro flare, complete with brain fog. It’s a lot of work, for sure. The flare I’ve had going on this week, which has accompanied the cold I’m fighting off, has not only ratcheted up my regular pain levels and caused fibro fog, but has also made everything that touches my skin feel like it’s burning. Clothing, water, even my own fingers to try and massage a painful joint. It all causes angry electrical shocks all along my nerves, from head to toe.

Most days aren’t as bad as that. Most days are a lot of muscle and joint pain and mild electrical shocks. All the time.

But the only way to keep that up is to spend a lot of time managing symptoms and triggers so that I can have more good days than bad. So that I can still participate in the world. Because that’s really all I want. To feel well enough to participate in the world. Being sick has been stealing that away, little by little. I was stuck trying to play catch-up just to feel well enough to get by. I didn’t really have enough energy to do more than that. Just surviving. And even that was hard to manage sometimes. So really this official declaration of disability should feel like a good thing.

What it Feels Like for Me to be Labeled Like This

It doesn’t feel like a good thing, though. Instead of a victory–”Yay you! You get to have some of the good parts of your life back and spend a little less energy on survival”–it feels like a defeat. Instead of accepting this as a new normal, I still feel like I want to keep resisting. Because I see how the world deals with disabled people. Not only because people like what’s-his-name think it’s funny to push an unoccupied wheelchair down the stairs, but because of so many other things.

Because there are too many stories like this one, where a busker was asked to move her gear out of the way on the sidewalk and refused. Which is horrible enough to begin with, but the crowd response seemed to be in her favor-that the man should have pushed the wheelchair around the busker into the (closed) street to get around her. But it’s not that easy to manipulate a wheelchair around curves and over curbs like that, and it’s also very uncomfortable to be bounced around like that if you’re sitting in the chair.

Being Disabled Means Dealing with Ableism and Ignorance EVERY DAY

It isn’t just people deliberately or accidentally being horrible. There’s the criticism heaped upon ambulatory wheelchair users. Just because we can walk sometimes we should walk all the time. Or we’re not really disabled, and we’re just faking (a common trope in the media). Or we’re not really disabled enough to need whatever accommodation we’re using. There’s the assumption that disabled people are stupid. If I’m using my wheelchair and out with other people, someone will almost certainly talk about me to the people I’m with–asking what I want to eat or drink, leaving me out of conversations. It’s humiliating to be ignored like that. 

Don’t Touch our Mobility Stuff without Asking

Of course there’s also the general ignorance about how to deal with mobility aids. By the way, if you’ve read this far: Don’t touch someone’s mobility aids. Don’t move them. Even if the person is not using them at that very moment. If you absolutely, positively must move them, ask for consent from the person, make sure you know where they’re being moved to, and return them to where you found them ASAP. And don’t move me out of your way if I’m in my wheelchair. I am not furniture to be shifted for your convenience.

And do not “help” by pushing the chair unless you have explicit permission to do so. You can cause serious injury to the person in the chair doing this: not handling turns, hills or corners well, wrenching control out of their hands by grabbing handles to push, or generally manipulating the chair in a way different from the way the chair user does it or expects it to be done.

Something is Different Now… It’s Like I’m Disabled-er

It’s not that I haven’t had to navigate all of this since I started using a wheelchair, but something about having that stamp of approval from some higher authority makes me feel like it weighs on me just that much more heavily. And that stamp of approval stares back at me, making me confront the fact that, no, the disability part is probably not going to get better, but that also signs me up for an entire lifetime of battling all of that and the scorn that people who receive support from the government also contend with. That people who get assistance are unworthy, lazy, and unwilling to take responsibility for themselves.

Never mind the fact that only about twenty percent of disabled people are employed, and not because they don’t want to work. Those who do work are more likely to be in part time jobs, often without benefits. Or the fact that the unemployment rate for disabled people is about twice as high as non-disabled people. Or the sub-minimum wage allowances made for disabled people.

Housing insecurity is a big deal for disabled people. There’s serious lack of affordable, accessible housing all over the country. Inadequate public transit means that accessible transit is hard to find in many places. And most disabled people have trouble finding support for the regular, everyday things that we need assistance with, too.

Not Super into this “Acceptance” Thing

I can’t undo the fact that I’m disabled. And I know that I’m so much better off when I accept the help, and when I use the mobility tools and other tools that are available to me. But each one seems to come with yet another obstacle that has to be navigated. Which takes time and energy that I need to carefully manage so that I can do all of the other things that are part of my life.

In the end, I’m sure I’ll come to appreciate the official designation of “disabled,” the same way I’ve come to appreciate my wheelchair and other modifications. It’s a journey to get there, and I’ll keep rolling along until I do. I just wish the world would meet me halfway sometimes.