The type of writing I do, the type of people I connect with, I tend to come into contact with a lot of people who are struggling with medical systems. Because of my own experience navigating these same systems, as well as because of the way some of my areas of privilege align – and sometimes not even privilege but just random chance that turned out well, I have also been finding myself more and more acting as a patient advocate for people.
This can mean helping someone find a doctor, helping them come up with questions to ask or ways of phrasing things, making phone calls from location to location, and sometimes even showing up to physically advocate for someone.
There are many people who I have been able to help in some small way and it was enough for them to be able to move out of trouble enough not to need me anymore. There is one core group of people, however, who no matter how hard I advocate, what strings I try to pull, what privileges I bring down to bear, I never seem to manage to get through to their primary caregivers enough for them to start receiving the help they need. Continue reading “I Can’t Move On, It’s Not Over Yet”
CN: Discussion of Statistics in relations to disability, other social issues, sexual assault, and abuse.
There are times when I am talking to someone about my life- about the fact that I’m scared of new proposed laws making it harder for me to survive in Ontario, or about how I’m one particularly unlucky day away from being homeless – when I get the feeling like the person I’m talking to thinks I’m exaggerating. They get this look on their faces that makes it clear they’re just humoring me by not pointing out how ridiculous I’m being. Meanwhile, I’m already minimizing how severe my situation is out of fear of being accused of exaggerating. Worse still, my circumstances are relatively minor compared to that of many of my friends and readers.
When they don’t automatically dismiss what I’m saying as being hyperbole, the people I speak with assume that my case is rare – an exception. A circumstance not worthy of planning against because it’s unlikely to happen again. And yet? Every day I meet someone new in the same type of situation I find myself in. It’s become so textbook, some people look at me as though I’m performing magic when I manage to guess the ridiculous circumstances they find themselves in or repeat almost verbatim what they’ve heard from doctors, therapists, or other people.
It’s a matter of framing, of perspective.
To someone in the mainstream, what is happening to me must be the result of either something I did wrong, or something extremely rare, or impossible. It seems like the probability of all the things going wrong that go wrong happening seem impossible.
What are the chances that every relationship you’ve been in is abusive?
What are the chances that so many of your doctors end up incompetent? That so many doctors end up holding biased opinions?
What are the chances that everyone around you is so terrible? Doesn’t it seem more likely that you are the problem? Statistically speaking that is?
By Kella Hanna-Wayne
CN: ableism, chronic pain
With every new person I meet, I have to gauge just how much to tell them about my disability. I try to be as open as possible about my health issues because I want to reinforce the idea that people who look like me- young, relatively fit, no noticeable limitations- can also be disabled. But being open about my disability means opening myself to potential scrutiny of my body, my diet, my medications, my exercise routine. Any decision I make about my physical health becomes fair game for intrusive questions. Until I get to know a person better, I have to assume they will default to treating me as if my health history is in the public domain.
Continue reading “GUEST POST: Why It’s Hard to Reveal My Disability to Strangers”
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.
Wait for it….
Continue reading “Guest Post: The Weight of the World is Measured in Spoons”
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.
Continue reading “The Emotional Labour of Asking for Help”
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.
Continue reading “Disability Misery”
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.
Continue reading “How did it Feel Getting Diagnosed: ADHD”