Editor’s Note: This Post was recently updated and republished on 6/19/19.
This poem took the Pongo Poetry Prize for teen poets. Written about her experiences dealing with hypermobile Ehlers-Danlos Syndrome (hEDS), the 17 year old poet studies Early Childhood Education at the University of Cincinnati.
DIDN’T ASK
by an anonymous, age 17
Everyone wants to be different, But not like this. The struggle, the pain, the guilt. The feeling that no one understands.
I didn’t ask to be different. I didn’t ask to be special.
I try to remember to do my best every day because the next day might be worse. I want to run a 5k. I want to be on the honor roll. I want to be a teacher. But what if it gets too bad? Will I ever finish college? Will I ever hold a job? Will I ever get to hold my own newborn child? Or will I sit alone unable to move from the fear of getting worse?
I didn’t ask to be different. I didn’t ask to be special.
But what if this difference can make me stronger? What if I can be the voice for the people who are sitting alone? What if I can be the teacher who understands?
What if I can prove that being different made me better? I can And I will.
I didn’t ask to be different. I didn’t ask to be special. But I’m glad.
I wanted to provide a list of gift suggestions that wasn’t just populated with things from box stores, but instead seeks to support all the spoonies who are out there chasing their dreams despite the struggle of daily or near daily symptoms. So my post begins with spoonie owned and operated businesses where you can do your holiday shopping. You could also add them and their great products to your holiday wish list, as I’m sure you’ll just love many of the products I’ve found (I know I want one of everything).
Most importantly, I’d rather give my money to spoonies trying to support themselves through their crafts and business acumen than give it to a big chain or conglomerate whenever possible. Unfortunately I didn’t find as many as I’d hoped, so I rounded things out with a listing of blog posts with other good suggestions of what you could buy a spoonie loved one for the holidays that would probably be greatly appreciated. If you’re a spoonie, you could use these lists to round out your wish list. If you’re looking for gift ideas for spoonies, you probably couldn’t go wrong selecting things from any one of these stores or lists. Just take a moment to consider the specific symptoms your loved one deals with before making any purchases and check return policies just in case.
If you have a business and would like to be added to this list, please feel free to comment at the bottom or email me and I will add it to the body of the post. If this goes well, we’ll do it every year and hopefully our options will continue to grow!
My Hero is a series designed to shine a spotlight on a person or group with special needs who dedicates their time to making the lives of other like people better in some way. These people are all heroes who spend their limited energy, resources and time to make the world a better, brighter, or more accessible place for people with chronic illnesses or who have special needs. They don’t have to be a spoonie or zebra to qualify. They need only to serve those individuals in their work. If you know a hero like this, be sure to let us know about them!
Michaela Oteri, aka Ogrefairy.
October’s Hero is not only someone I admire and respect a great deal for her politic, wit, considerable skill and all she does for the community; she’s also someone I’ve recently come to know and admire as a friend. Michaela Oteri, known as Ogrefairy in the art world, is a digital artist in Florida with Ehlers-Danlos Syndrome (EDS) who spends her limited energy and resources creating empowering, intimate, one-of-a-kind portraits of the physically disabled in the spirit of the Cripple Punk (or cpunk) movement as part of her business as a freelance artist. In addition to these portraits, she volunteers her time administering to online support groups for people with her conditions. When I interviewed Michaela, we talked about the inception, ideologies and history of the cpunk movement and how it helped to change how she felt about her own disabilities. We also discussed a bit about how she has adapted her artistry to make it work for her, along with some invaluable advice for artists with similar conditions looking to break into the freelance market.
The Cripple Punk Movement
Despite this being the fourth article in this series, it was around the time that I met Michaela that I began thinking about this series. You could say she was part of the inspiration for it. I was super impressed with her skill and the vision behind the cripple punk portraits I saw in her portfolio. I felt immediately inspired by the images, empowered, even. I saw people with defiant eyes daring society to pity them or make assumptions about their weakness. People with the inner strength to stand out and say “Yeah, I’m different from you and that’s okay. Go ahead and gawk. This body is still beautiful and I am proud to be in it.” People kind of like myself, or at least how I aspire to be. I asked Michaela to explain what it’s all about:
Tyler Trewhella, Founder of the Cripple Punk Movement. Artist: Ogrefairy.
This is going to be a bit of a long answer so hold onto your hats!
The Cripple Punk movement isn’t mine! Cripple Punk (or cpunk) is a movement that was created by Tyler Trewhella, who sadly passed away last year.
It is a movement that is exclusively by the physically disabled for the physically disabled. It is about rejecting pity, inspiration porn and all other forms of ableism. It [r]ejects the “good cripple” mythos.
It’s basically a personal movement about freeing yourself from what society tells you, you should be as a disabled and/or chronically ill person. The movement has been really great to me and has made such a huge difference in how I, and a lot of people that I know, see themselves.
These days it is all about keeping the movement alive for Tai, and all of the other people we have lost along the way, and trying to spread awareness/self-love to people who might need it.
My portrait series is one of the ways that I have tried to incorporate, be a part of, and boost this movement. I draw disabled people as they are. Who they are. And try to incorporate as much personality and aspects of them as individuals as I can.
Disabled people are beautiful and awesome and interesting and we honestly spend so much of our lives being told by society that we are not. This series is just my little part in changing that.
Artist Original by Ogrefairy
In Ogrefairy’s portraits, you get a true sense of who these people are, what they love and what matters to them. Laden with symbolism of the things most important to them, stirring t-shirt quotes and proud, determined faces, these portraits show that the subjects may be disabled, but they’re still well-rounded individuals full of pride, individuality and a zest for life despite the trials they endure.
I also asked Michaela how often she gets confronted about the term “cripple.” Obviously, it’s a loaded word with historically negative connotations and anyone who is differently abled would probably be horrified and insulted to be called crippled by an able-bodied person. Ironically, it’s the able-bodied she’s heard the most resistance from, perhaps because they don’t quite understand the act of reclamation it is:
When it comes down to it, Cripple is our word to reclaim. It has been thrown at us our whole lives in a derogatory way. So you know what? Fine. We are cripples. And we are great. Greater than society would ever believe us to be.
Some disabled people are uncomfortable with the word and I understand 100% and don’t judge them for it at all but usually when I explain the movement, I haven’t really run into any disabled people who weren’t interested. That is why “CPunk” is an option, for people uncomfortable using the word, which is 100% respected.
Of course things like this are always going to come down to a matter of personal opinion and identification and Michaela is sensitive to these feelings. As a leftist leaning political person, I’ve always been very comfortable with word reclamation. My point of view in using the term cripple is to say that yes, I am and I’m proud of that. I’m proud of all I’ve been through, survived and even flourished under at times. And People can’t rob me of my pride by calling me something which I already fully own in heart and mind. By reclaiming such words, we turn their power around.
Life as a Disabled Artist
Save-Disk. Artist: Ogrefairy.
Michaela was diagnosed at 14 with primary EDS, but has always had symptoms. She has many comorbid conditions like most of us zebras and suffers from persistent symptoms of ME/CFS, which means she must spend a significant amount of time in bed at rest or much like me, in a recliner. Michaela lost the ability to walk before she was 18, but with surgeries has regained the ability with the assistance of crutches. Due to her ME/CFS and other symptoms, however, she still needs to use her power chair for trips requiring a lot of walking.
Like so many of us in spoonieville, Michaela’s primary link to the outside world and the work she loves so much is her laptop and her tablet. With her drawing tablet, she can draw in bed, which is the best place for her to work. She tells me her conditions are the reason why she chose the medium she did. “I started with pencils actually and dabbled in markers but I kept on injuring my hands. I was told that I needed to stop drawing or I would damage my right hand permanently. Working digitally means that I can turn the pressure sensitivity waaay up so I don’t have to press down hardly at all. I have gotten very good at controlled, gentle gestures to create my work.”
Among the artists I’ve spoken with who have EDS or HSD, hand pain is the number one complaint. The other thing that keeps them from working longer is almost always neck and back pain. Digital art sounds like a great alternative if you can successfully make the switch. With my own painting, hand strain and neck strain keep my work at a snail’s pace. Even with the way Michaela has found to make her art work for her, it can take anywhere from two days to a week to finish a portrait due to the wide range of symptoms and their variance and regular breaks are a very necessary part of the process to combat the symptoms that develop during her work.
Of course life can’t be all work. Michaela also enjoys spending time helping others with her conditions by administering to some groups and offering her advice and support when needed. She also enjoys the social aspects of the groups, so important to a well balanced life for anyone.
Michaela also enjoys spending time with her partner, whom she met as a teen and is now married to. Michaela largely credits her partner for inspiring her to pursue art. “I didn’t get really determined until I made a new best friend who I thought was soooo awesome at drawing and I wanted to be like them! I was around 16-17? Now we are married and we are both artists so I guess that went well!”
Indeed, it did, Michaela!
Ogrefairy’s 8 Tips for Aspiring Freelance Artists
Artist Original by Ogrefairy.
When I asked Michaela what other disabled artists looking to break into the freelance market might expect and she was very generous with her response:
Buckle up. Freelance is a tricky business to break into no matter what. It takes a lot of work and time and effort and A LOT of luck.
First I would recommend to make a name for yourself. Choose a name that is going to be your art/business name. Mine is Ogrefairy and I can be found on most social media sites under that name.
The next thing is network. Make pages everywhere. Facebook, twitter, tumblr, instagram, youtube, art sharing sites, anything that is applicable to your work or situation. You want to just get your work out there and interact with people. Comment on others work and have conversations. Do collabs and trades. That is a great way to start building a reputation. I suggest not taking requests though because it gives people the wrong idea.
Find a niche. Some kind of group or community that you can join/produce work for that works for you. Fanart is the easiest choice but there are a ton of options. Fill your gallery with all kinds of examples that fit this.
Do not sell yourself short. Your work is valuable. When you want to start trying to do your work for money, keep in mind how much goes into your work. I suggest looking at prices of people who are selling work around your skill level and make pricing choices from there. It is a business so you don’t want to overcharge too much and risk losing business but you don’t want to undersell yourself either.
As you get interest and demand for your work, you can slowly start raising your prices. My standard full body portraits started at $25. Now they are $80 but that has been very gradual over the course of 5 or so years.
DO NOT expect to get noticed overnight. I was an artist for 8 years before people really started taking a lot of notice and that is okay!
Just keep working and remember. This is primarily for you. Focus on your portfolio and your networking, sure but remember that you are supposed to be having fun first and foremost and if you aren’t enjoying yourself, something is wrong.
Jesse Rice-Evans. Artist: Ogrefairy.
In addition to creating these inspirational portraits, Michaela does a variety of commissioned portraits and also takes on commercial work. With a name like Ogrefairy, you may have already guessed that Michaela also has a passion for drawing fantasy creatures and the occasional comic book character, too. Her portfolio is filled with interesting subjects and beautiful creatures, both human and mythical. Always wanted to know how you might look as a mermaid? Michaela is no doubt up to the challenge and her rates are very reasonable. Her Cripple Punk portraits are only $50-60 and her other non-commercial portraits can run from $25-$200. Can’t quite swing $60? Put a Cripple Punk portrait from Michaela on your holiday list!
You can follow/reach Ogrefairy at the the following links:
Toot Your Horn Tuesday is a place where any blogger who either has a disability or writes on topics of health and wellness for people with chronic conditions can come and share their best article each month with the Zebra Pit Community. Ideally it would be something that might interest and enrich our readers; Have a tutorial on meditation? Did you demo a product on pain relief? Wrote an article on 12 ways to achieve better sleep? Shared your story about getting a diagnosis? Created some tips on how to deal with difficult doctors? Waxed poetic over the joys of adult coloring as a way to de-stress? Share it here!
I usually reblog a few of my favorite contributions throughout the following month to ensure my readers see it and I think people are finding it’s a great way to meet and interact with other bloggers, so consider joining in on this networking opportunity. If you’re enjoying these posts, please share them and help their popularity grow. If contributions don’t pick up within a few more months, I may not continue the program.
Here are the rules:
The post you share doesn’t have to be on a disability health or wellness topic. If it isn’t, you must be the caregiver for, or a person affected by disability and you must occasionally use your blog to promote visibility and acceptance of disabilities.
Only one post share per blog/blogger per month is allowed.
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Blog links should be shared to Toot Your Horn Tuesday specified pages ONLY and must match the month of publication (October TYHT should only have October blog posts submitted), but you can post on any day or time, NOT just the Tuesday the post comes out!
Commenting will be shut down on each post after two months.
These rules are subject to change at the discretion of the editors for the duration of the program.
Participation
To participate, provide a description of your blog post along with a link in the comments section at the BOTTOM of this post, which will remain open for two months. To find the comments section, scroll all the way to the bottom past the Related Posts section. Once it is reviewed for suitability, it will be posted. I will post a new Big Blog Party post on the LAST TUESDAY of each month so be sure to set your calendars to return next month and share this post to spread the word with your community and blogger friends so they can participate, too! I look forward to getting to know you and your work better! If you have any problem submitting your entry, contact us.
Readers
Please keep the conversation going! Take the time to like and comment on the blogs you enjoyed reading so our guest bloggers know you appreciate their work and will keep coming back to contribute to our knowledge base! I may use your reactions to choose certain articles to reblog periodically and to build more on the types of topics covered at the Zebra Pit as well.
At Home Careers With Lupus And Your Rights [Everything You Need To Know]
I’m going to tell you the laws in the USA that support your rights within a work place and how to use them to your advantage. Plus, there are some great insights on what positions have accommodations that you may have never thought of.
How do I know all of this?
I was in the same position as you. I wasn’t sure if I could continue my job, how to ask for help, and get what I need without getting “let go”.
I was sad that my career was over before it even began.
I hated myself for having Lupus, for suffering so much in such a short amount of time.
Many times I wondered if my life would consist of struggling to work and struggling to have enough spoons to even take care of myself after work.
I hated that I had no positive impact on society and in my own life. How can I pay for this disgusting, life-altering in all the wrong ways disease?
How can I have a family one day and support it? How can I live my life sitting at home, broke, and not able to prevent symptoms because I can’t afford it?
That’s how I thought and nothing improved in my life. It actually got way worse.
I made terrible decisions. I somehow still graduated with my bachelor’s degree though.
I was still in school and I knew I’m never going to be in the healthcare field now. I’ll never be able to help people HEAL from disease, sickness, and pain. My goal was to be the physician assistant or nurse who didn’t dismiss people for their problems and write them a script that won’t work or worse, make their problems worse!
I was going to be the person who found the cause of the problems or refer them to someone who will take the time to do that too.
Don’t you want to keep pushing? Don’t you want to live a better, quality of life with Lupus?
Don’t you want to work at home with Lupus and have a career at home with Lupus?
Well, with this easy read, you’ll be prepared to advocate for your health while keeping your current position or finding a better career that fits your needs.
If you don’t want to read the details, check out #LUPUSLIFEHACKS throughout this article for sections 3-6.
The rest of the sections need to be explained because the government or workplace isn’t a black and white kind of deal.
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Toot Your Horn Tuesday is a place where any blogger who either has a disability or writes on topics of health and wellness for people with chronic conditions can come and share their best article each month with the Zebra Pit Community. Ideally it would be something that might interest and enrich our readers; Have a tutorial on meditation? Did you demo a product on pain relief? Wrote an article on 12 ways to achieve better sleep? Shared your story about getting a diagnosis? Created some tips on how to deal with difficult doctors? Waxed poetic over the joys of adult coloring as a way to de-stress? Share it here!
Michelle Curtis (Capricious)
LadyPamelaRose
David Curtis