CN: Unedited stream of consciousness.
You know, I don’t really care what scientists say about the matter. Whether it’s a hundred pounds, or trillions of tonss, I have found a more accurate way to measure the weight of the world.
I think one of the hardest things for me to learn after I became disabled, was when to slow down, and when to ask for help. We talk about the energy cost that comes with living with chronic illness, but accepting it is still a process. Coming to terms with the fact that you can’t do certain things is hard. You’re determined not to let being sick change you, but you have no choice. You have to. Because you are different now. There are things you cannot do, and moving on and becoming yourself means coming to terms with that.
What many people don’t understand is that it’s not a onetime thing.
It happens again every time we have to ask for help.
Society tells us, as well as everyone in our lives, that we are a burden and that that is all we can be. No matter how much we learn that it is not the case, it is still hard not to internalize that message. The message is passed along in the media around us – with disability being presented as the worst possible thing that can happen to anyone, and in the reactions of people around us.
When Alyssa and I were together for example, it was not uncommon for members of her family to question her as to what good our relationship was with me being so broken. When she had called her mother to announce our engagement, what should have been happy news was instead met with a sense of mounting horror and dramatic exclamations of “no, no, no”. Later when discussing it with her father, the concerns about tying your fortunes to a disabled person came up again. When I was with my ex before Alyssa, so many people would tell me over and over again that I was lucky to have found someone who was willing to stay with me. I think the worst however, was when a friend who also happened to be Alyssa’s partner tried to talk me out of getting a dog to train as a service dog for myself by bringing up how much Alyssa already had to do around the house.
Although it was never flat out said, the implication was obvious. I was a burden.
The following is a stream of consciousness poem by a friend of mine who has been dealing with overwhelming medical negligence for several years, most recently blinded by a doctor ignoring medical protocol for a medication they put her on. These are her thoughts in the midst of trying to process her most recent medical traumas and yet another severe pain flare that has had no help from doctors.
TW: Discussions of Death, Abuse, Suffering, Suicidal Ideation, Medical Neglect, Troll Brain thoughts. These are unedited troll brain thoughts as well and so not controlled for slurs and internalized prejudices.
written by friend Sophie; after spending 9 hours in an endless sob session and panic attack before being given a clonazepam and sitting down to write this as the clonazepam started to calm her down.
I’m multiply disabled, by whichever model you use. I am on disability assistance and I live in Canada where I even have access to healthcare. Given all this, you might think that the fact that I still have disability related depression, that I am proof that disability really is misery. That the medical model is right.
I want to make this really easy to understand.
I’m not miserable because I’m in pain.
I was that strange kid who knew at a very young age that I wanted to go to university. I don’t know when exactly it started, but I was working towards that goal from an early age. I used to read a bunch of different books on how to get the best grades to get into university. Many of them recommended doing extra credit projects, which would show the teacher my enthusiasm for learning.
I started many different projects along these lines. I remember one in particular, about the St. Lawrence Seaway, where I spend hours reading up on the history of the canal. No matter how much research I did or how many hours I spent motivating myself, none of these projects ever got finished. Homework too often waited till the night before it was due to get done. On the few occasions that I did manage to start an essay early, I would get significantly worse grades than those I wrote at the last minute.
There is this episode of House, where the hospital hires a doctor who uses a wheelchair. As a result, House loses his parking space and is forced to relocate slightly further away. During this episode, House, the doctor in question, and Cuddy, engage in an argument over who deserves the closer spot. The audience is predisposed to assume that House is a selfish jerk, and so an important point about disability is missed by the majority of watchers – namely the way in which disabled people and different disabilities are pitted against one another in order to keep us from uniting in a way that might pose a threat to abled power structures.
The debate that takes place raises some of the many ways that disability concerns are generalized in a way that hurts some people while it helps others, and imposing an ineffectual rating system regarding what qualifies as disability and what doesn’t.
Spring seems to come earlier and earlier each year, and with it comes the increase in bike traffic. There is a lot of good that comes from bike riding. People get more exercise, less fossil fuels get used, there are good reasons to ride a bike. Bikers also deal with a lot of dangers. Most cities have insufficient bike lanes, and drivers are not taught how to handle bikers on the road. As such, there is a need for security measures to prevent fatalities and accidents. One of these methods is the use of a light to make yourself more visible to drivers.
Most of these lights have two settings – solid and flash.
In most cases people only consider their own personal safety, but there is one major problem with that. You see, those flashing light settings can be a trigger for photosensitive seizures.
I write a lot about my disabilities and illnesses. I’ve discussed what trips to the hospital are like and what a regular day can look like. I’ve shared advice for new patients based on what I’ve discovered myself in the time I’ve lived with them. I have never, however, taken the time to just put together a list of definitions of what those various conditions and disabilities are.
So without further ado, I introduce a glossary of my weird body stuff.