When I am with my family and we pass someone using a wheelchair the overall reaction is pity. I can tell. They make that “tutting” sound or say something like “aren’t we lucky to be able to walk to the restaurant!” or “I should never complain again, some people have it so hard!” You know, the usual.
I used to feel pity too. Then I realized that that pity is unnecessary. And condescending. And shows a lack of understanding of how people can live in diverse ways. Actually it was videos from Shane Burcaw (https://www.youtube.com/c/SquirmyandGrubs) many years ago that first made me think. He explained it so well. And from his videos I could see that he was living a fulfilling and happy and not miserable life.
As I became familiar with the disability community online and on social media they were able to educate me about how mobility aids aren’t something to be sad about, for example. That people who can use wheelchairs use them to get around and do the things they want to do. In fact they are a way to be free. The same applies for so many other devices that many people in society associate with having a “sad” life or being deprived of “fun” things.
Now that my own mobility is more limited, I try to remind myself of these things. Because even when it is about yourself (maybe especially when it is) you can easily absorb that pity from others and start to feel self-pity. Self-pity is almost an antagonist to Pride, and since July is Disability Pride Month, I am trying to be free of my self-pitying thoughts as much as possible. It can be difficult when people around you very clearly feel sorry for you, or express that they do straight to you. My parents don’t hide the fact that they think if I were to get a mobility aid at my age, this would be extremely sad. My father has even cried about this very fact. Of course, they are allowed to grieve for their non-marathon running, non-athlete-of-any-kind- daughter, but only to an extent. After that, I want to show them that I am happy to be able to have something that allows me to travel more independently and that I am not sad about it at all. That it is helpful and why should that be a bad thing?
I can also sense when my peers are pitying me. In fact, this often comes out in quite nasty ways. Like not inviting me places, or not including me in things, or not discussing things with me. I know that to a large extent they do these things because they are frightened of me with a disability. They are scared of taking me somewhere where something might happen, they feel sorry for me if I have to say no because it’s not accessible to me, or they are so scared to upset or “burden” me with “silly” things. I just want to be treated with normal respect and consideration. The kind that I give everyone else regardless of ability. I want to be able to decline something and give an honest reason and then not to be upset and not to upset the host either. To not be seen as too fragile physically or mentally but to be respected when I choose to step back because of it. That might seem a lot to ask, but in reality non-disabled people actually live their life like this every day. Because their being is not something to be pitied and fretted over at every turn.
Treat every individual the way they want to be. Don’t make assumptions about people’s lives based on things you can see on the outside.
I have to be completely honest, before I became part of the disability community I did think of disability as something sad. I didn’t know anyone disabled (I probably did but was unaware) and the way it had been talked about around me was as something tragic.
I was also in deep denial about being disabled. My illnesses were never acknowledged by my family, and still they will run from the term “disability.” Sometimes I struggle to understand their fear of it. It goes far beyond my lack of understanding of disability in my childhood. This is the first year I acknowledge my disabled pride, and yet I still do it almost anonymously because I am still surrounded by toxic attitudes (baby steps).
To be proud and disabled to me is about accepting, loving and empowering the parts of me that are different to the majority of others. It should be about sharing all of myself without trying to hide the “sick” bits. For my autistic side, it means I should be proud enough of myself to unmask. On top of that it means the ability to celebrate things that were once shunned in our society and educate others so that we get further and further from old and destructive mindsets. It means so many things. I endeavor to try to share more about this topic throughout the month here, for whoever wishes to listen!
Despite all there is to be proud of, I still feel the element of sadness. To me, it has to do with the grieving process of leaving behind what I thought my life would be before I understood that I was different to the pictures I had in my mind. It is seeing the sadness on loved ones’ faces when they seem disappointed in my abilities or lack thereof. Disability Pride Month should be about coming to understand the sadness and being proud that it is part of my disabled experience. To understand that it is by no means only sadness– it coexists with a strong, fulfilling, fun and happy life as well.
To be totally fair, I’m not sure if this is something I came up with or someone has said it long before me, but it’s a phrase I have been using for years. One of my personal favorites.
I love laughing. I love being silly and making jokes. I would love to spend all my time with people who make me laugh until my stomach hurts (very few people actually have this skill but I’m lucky to know a few). But life is sometimes really really unfunny. Like full of situations where you are crying or screaming or shouting, and any one of these usually involves lots of tears from me regardless. I am fully aware that not everything can be turned into a joke and that humor is not always the most appropriate way to go. But it actually is more often than you may think.
After you’ve felt the feelings and felt the pain, or comforted your friend or cried with your family, there should always be space for laughter. If you didn’t start to laugh at some point you would just cry forever. I cried about my mother’s cancer, lots and lots and lots. But I also made dark jokes about it and when at some point early on was able to share this humor with her and she joined right in. Plenty of stuff about hospital appointments and strange drug side effects can be funny. If you were sitting in the waiting room and couldn’t laugh about how ugly the plant looked or how ridiculous the painting they had chosen was, you might just sit in there and cry because it’s a hard place to be. But laughter makes it easier.
Humor as a coping mechanism. Yes, that’s what it is. Why is “blank… as a coping mechanism” seen as something negative? What’s negative about coping? If laughter and jokes help you through the darkest times, then go for it. I couldn’t just cry and cry. I couldn’t do it. It’s also quite tiring. But if I didn’t laugh, that’s what I would be doing instead. Trying to make the best out of the worst. Make it funny. Allow yourself to laugh at the ridiculousness of the darkness that we find ourselves in.
I can’t even remember how I stumbled upon the podcast. It was late 2020, after I had spent almost a year isolating and fearing the outside world because of the “you know what.” Before I knew it, it was the only podcast I wanted to listen to. Jeremie, Taylor, Brian and their amazing guests became my company throughout that incredibly challenging winter. The first episode I listened to was about grief. It made me laugh and cry and I knew that this show was different. So, what a Christmas present it was to discover hundreds of episodes where they give their platform to people dealing with all manner of incredible challenges.
Their humor was what I was most drawn to. I have always used dark humor and (slightly inappropriate) jokes to get through the most difficult situations. I had now found people who were speaking my language. Not only that, but they were speaking it in a time where I felt the most alone and most disheartened. My mother was fighting cancer, my grandfather was dying of cancer across the ocean, and our hearts were breaking as we accepted that we would spend his last Christmas apart. Meanwhile, I was doing my very best to hide and push away my own health problems because between all that drama and the “you know what” there wasn’t space for anything more.
In a family where we don’t talk about the hard things, listening to Sickboy gave me an outlet. Sounds strange that an outlet can be found in not talking but listening– but it was incredibly powerful. I needed to hear that other people were going through similar things. I needed those conversations to show me that not only is it okay to discuss things, it’s even okay to laugh and joke about the difficult parts of life. I needed it to show me that other people had been through adversity and come out the other side, because there are times where it’s impossible to see the other side.
Almost every episode, no matter what condition or event was talked about, was able to validate something I had felt. Whether it be the frustrating struggle to be listened to in the over-burdened healthcare system or the isolation that you feel when you have something that makes you a little different from the norm. Listening to the guests was freeing. Plus, I have learned so so much.
It’s now about a year since I discovered this gem. I have listened to every episode, some a few times over. I await Feel Good Friday every week. It will make this next dark and difficult winter a little brighter. I have no sense of what 2022 will bring, or what direction my life will take–nobody really does. But I fully expect that Sickboy will be part of that year no matter what is in store for all of us.
In short, I really recommend you listen to this podcast, in case you didn’t catch that.