Mind-and-body numbingly inescapable
You strike me from within
The pain spreads like a wildfire
Bleeding into the cracks
You slither and seep down deep between my bones
You pin me down, sucking the life out of me slowly
I am suffocated, perforated
I am fighting to stay alive
I go dizzy and numb
You tear me to shreds
Fragmented on the floor, I am trying to pick up the pieces
Trying to mend myself back together
Or at least what I thought I knew I was
I have no choice but to surrender to your demands
I recently have had a huge spike in my chronic pain. I have changed environments back to my parents' home for the holidays--which I'm very excited about, however, switching environments is very hard on my pain. There are many different aspects that goes into a changing an environment. There’s a change in diet, sleeping schedule and switching beds, changing from living alone to living with three other people. The cold, frigid weather can be hard as well. The list goes on. And, it all adds up a lot and can cause my pain to spike during my adjustment period. Besides spiking my pain, my anxiety and depression also climbs higher. I’m placed farther away from my friends and visiting them becomes much harder. It cannot be just a stop by and say hi kind of get together; it becomes a full day+ trip—which is often very hard for me to do.
I think a lot of people may not experience this difficulty. Or if they do, we don’t talk about it. But I think it’s important. Your chronically ill friends may need more help than you are aware of—this is just one of the difficulties that comes it. Please, check up on your chronically ill friends during this time of year! I know even just some support and help can make a world of a difference.
Yesterday I received one of the 2019 Merit Awards from the Toledo Arts Commission! I'd like to give them a great big shout out for this amazing opportunity to fund my art. I would also like to thank them for how absolutely wonderful and welcoming every member of the Arts Commission is! Everyone was excited to meet with me and congratulate me for this award. I'm very honored to see how this grant pushes my art and the new connections I've made in Toledo because of it!
Check them out: https://theartscommission.org/
A few days ago, I was on my way to a local coffee shop to meet a friend. This place is a little piece of diversity from this town, and I always feel comfortable here--except for the other day. I walked up with my cane to the register, ready to order. Just before I got there, an older man who was leaving the register pointed at my body and cane and said, "You gotta gimp?" I was so taken aback; I didn't know what to say. I didn't respond. He said again, "You gotta gimp? What happened?" Again with this question that is actually meant: Please reveal your personal medical information. I hate it. Nothing "happened" to me. There was no "incident" between when you saw me with a cane and the next day with a wheelchair. It's appalling to me that even the older generation will publicly point people out and use slang. I have never understood why others will choose to do this. I personally have never looked at someone of difference to me and publicly point and ask them personal information. Young people can have canes and disabilities, too; it does not just have to be the elderly. When people do this, I feel ashamed, self-conscious, unwelcome and unwanted in our society.
Definitions of Gimp:
1) a derogatory term for someone that is disabled or has a medical problem that results in physical impairment.
BUT IT ALSO MEANS:
2) An insult implying that someone is incompetent, stupid, etc. Can also be used to imply that the person is uncool or can't/won't do what everyone else is doing.
So this is where more of the problem lies. This language is a double edged sword--It is pointing out my disability in a negative way, being said publicly, and then it implies that I'm incompetent. Whether it was their intention or not it's just plain insulting. Able-bodied folks, take note of things not to say to people with disabilities.
Something I learned yesterday about being disabled is the fact that my schedule solely relies on others. Luckily for having chronic pain, there are times I can do things on my own, but if it's a bad pain day, I have to wait for others to come and help. Being of college age, It is VERY difficult. Everyone has really busy schedules and I feel I can't just ask people to drop everything their doing just to carry something for me. But it comes down to bugging people to help and waiting around for over ten minutes because I cannot go anywhere without help. It is very frustrating. It's not anyone else's fault. I need to get better at asking for help anyway. Waiting is just something that occurs when you are disabled. It's a fact of my life now.
1. Staring - staring at the mobility aid, how the person moves, looking for more than three seconds
STOP DOING THIS - IT MAKES US SELF-CONSCIOUS AND OTHERED
2. Commenting and Asking - commenting on "what happened?" or "why do you have [enter mobility aid]?"
BY ASKING THIS YOU ARE ASKING US TO REVEAL A PERSONAL ASPECT OF OUR LIFE TO USUALLY A RANDOM PERSON. IT IS HARD FOR US TO DO, and RUDE FOR YOU TO ASK. Stop looking at us as only disabled, and start looking at us for what we are -- PEOPLE, just like you!
3. Putting yourself in our shoes - "If I were you, I'd just..."
NEVER A GOOD THING TO SAY. You are putting yourself in our place, which you've never experienced and maybe never will. You cannot give us advice on things we know more than you. You are in no place to give us advice or put yourself in our place.
4. Scheduling events at very late times in the day, or inaccessible places
It always feels like YOU DON'T WANT US THERE. For people who are chronically ill, late times after 6pm are usually really hard (at least for me). It's hard enough to get through a full-day of work, let alone staying for a meeting at 9pm and later. Inaccessible places are obviously uninviting for people with disabilities.
Super Awesome Brands I Support:
SICK is a thoughtful magazine by chronically ill + disabled people.
Salty is a 100% independent, volunteer ran newsletter, bouyed by the voices of women, trans and non binary contributors from all over the world.
Includes Articles with People with Disabilities!!
Attached you can find the full document of offensive disablist language! In the document it has outlined all the words with origins. I found it very helpful and interesting to read where the words were from and how they became slang for disabled people.
I dated a guy once who used some of these terms... and while I could feel it was wrong, sometimes I didn't know how to defend it or explain it to someone who isn't disabled. I think this document helped me understand my discomfort of others using disablist language.
Here's a great book that I am currently reading. I relate to a lot of what it says. It focuses on expanding both feminism and disability studies and how they are related.
-A woman yelled at me for parking in a disability parking spot even though I have a placard -- I just look able-bodied.
-staring (many different people) at me when going to my car in the disability parking spot -- probably trying to figure out how I'm even disabled
-At a funeral for a member of my family, nearly everyone commented on my cane -- while they were probably worried, it is rude to comment on it and make me explain my disability
Of course, there were people who just wanted to comment about my cane, and now that I look more disabled. I had a few of the “what happened” comments. But actually, as I started to give people the benefit of the doubt and tell them at least just a hint of my story, there were more people who revealed themselves back to me. I found more people with invisible disabilities and illnesses than I knew about. My own internalized ableism was shocked, because of course I assumed that the people who I thought were able-bodied were not. But this is what my journey is about. This is what I’m creating all of my art about in school and sticking up for those people who can’t voice it to the public themselves. This was a great experience, and I want to embrace those comments about my cane more now. My cane is almost starting to feel like a safe space. A way to reveal my own disability as well as allow others to reveal things about themselves that they don’t necessarily shout from the rooftops.