Unrest Documentary: Millions Missing

Unrest is a documentary, made by Jennifer Brea, who is a woman that has Myalgic Encephalomyelitis or Chronic Fatigue Syndrome. In her documentary she shares what her experience with M.E. is like, as well as others experiences within the community. Unrest is a though provoking and heartbreaking film. Jennifer Brea shows the good, the bad, and the ugly, but more important she gives the viewer an honest and raw look at what it is like to live with a severe chronic illness.

 

This was definitely not an easy film to watch for many reasons, one being how it drew on my own experiences, and another being how well is shows the injustice disabled people face. Brea started an event called, “Millions Missing,” to raise awareness for myalgic encephalomyelitis. Tomorrow, May 12th, is the third annual Millions Missing protest, that aims to reach “increased government funding for research, clinical trials, medical education and public awareness.” You can become involved in the protest by going to a location near you and protesting or by letting them know you will be protesting virtually.

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I am impressed with how accessible they have made this protest. Activism in general can be incredibly inaccessible, and seeing steps like these made in order to let anyone who wants to participate be a part of the event is truly amazing. Of course this is on their minds due to the whole event being about disability, but I hope to see others follow in their footsteps when it comes to making protests accessible. Jennifer Brea is a great example of what we need the leaders of disability activism to look like. She is disabled, unapologetic, and keeps others needs in mind when planning events. She also is dedicated to sharing more voices than her own, which is so so important. The disability experience is vast, and differs from person to person even when they have the same illnesses.

Millions Missing is the perfect name for this protest. It really shakes me up to think about all of the wonderful people who are “missing” from a regular life due to illness. I personally have dealt with this, being “missing” due to being mainly homebound. It’s incredibly isolating and lonely but events like this really help. Our stories are worth sharing and people should be aware of our lives. Thank you Jennifer Brea for contributing much an amazing movement!

 

 

 

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The Intersection of Queerness and Disability: Guest Post- Color it Queer

I’m excited to share a guest post with y’all from the wonderful Color it Queer! She is a blogger who, like myself, is both queer and disabled. The intersection of our identities is not spoken about enough, and is very underrepresented. Sharing stories, like Jess’, is so important in order to bring awareness about our experiences. Jess has a great blog where she talks about being queer and disabled, and she also works with marginalized queer youth, which is super cool. Be sure to check out her blog, and post below!

I’m Jess, and my gender pronouns are she, her, hers. I’m queer and nonbinary and not afraid to be super open about it. You can probably tell from all the stereotypes I fall into, but my disability is invisible. However, you can kind of see it from the scar I have on my head.

I have epilepsy, making me a minority within a minority, a queer person with a disability.

Here’s my story:

It all started in third grade the day after Christmas when my grandma came in to check on me since it was late in the morning. I wasn’t sleeping in though, I had been having a seizure. My seizures were bad when I was young, where I’d have to go to the hospital to get them to stop. We eventually had my seizures under control with medication, but around the time I hit puberty, they started getting bad. By high school and into college I was averaging at about a seizure a month. These seizures were not “as bad,” where I’d literally be able to just go to class after. I had become “the sick child” where I’d constantly be getting more attention than my sister because my mom, who is a single parent, was always worried about me. For example, I couldn’t take a shower with her being home.

I graduated high school in 2013 and that summer, I started looking into brain surgery. It was always an option but something I think I saw as really risky and not worth it. My seizures were hard to deal with, but I was a “trooper.” I never wanted to miss a day of school or go home from a headache. I had been trying other things like tons of medication changes over the years, going gluten free, and even a diet that’s similar to the South Beach Diet. But eventually, I decided to look into surgery with my mom. After a bunch of tests to see if I’m a candidate (aka will I lose senses in my left-hand that I write with since my seizures are on my right side and the ride side controls the left?)

Months later, when I started college, I found out I was a good candidate and planned to have it the following summer so I could recover. Fast forward to the following May 29th of 2014 when I go into surgery that is two parts. The first part was the surgeon cutting open my skull to attach wires to provoke seizures and clarify exactly where the seizures were coming from. Luckily, they were only coming from one place and the second part was the surgeon taking that piece out. As for recovery, by the end of August, I was at an Ingrid Michaelson concert in Central Park and didn’t spend much time recovering, that I can remember.

Since I’ve had my surgery, I’ve only had one seizure, unfortunately, on a bus. That was 2016 I think. I have a horrible memory.

But you said you’re queer, right?

Yes! I didn’t come out until after my surgery. I had been questioning my sexuality, but didn’t come out and seek more professional resources (other than people saying you’ll figure it out, no worries) until my sophomore year of college. Well, actually, I came out to my mom as questioning and then that Spring semester started seeking support from my school’s Lesbian, Gay, Bisexual, Transgender, Queer Center. Then I came out as lesbian.

The following year of college, I moved onto campus into Stonewall Suites, my school’s LGBTQ/Gender Inclusive living community. This was awesome because even though my school was literally a 7 minute drive from my house, and my sister went there, I was there super often and didn’t drive, so it made sense that I lived there. I was finding so much community among other queer folks and got my first kiss ever that year. IT was very exciting time that included lots of new experiences at in my junior year, including starting my blog. Then my senior year, I really found my passion for activism when I became a peer educator at the LGBTQ Center. This connects back to the disability piece because along with outreach work, I facilitated a group called QBility, looking at the intersection of being queer and having a disability.

What now?

Glad you asked! Now, I’m still on medication and still deal with side affects that are a huge bummer, but I’m overall in pretty good health. And I also live across the country in Portland, OR. I moved here after graduating with a degree in Journalism with a minor in LGBTQ Studies for an AmeriCorps VISTA program with Veterans Services. I don’t recommend it (that’s another story–email me). I might be bias because my project closed after 4 months. Luckily, I have a rad job working at a youth home of LGBTQ Youth who are on probation/parole. I love it here in Portland, and the disability piece comes into play again with my lover. Portland has given me lots of firsts as a queer person, and it’s also where I came out as nonbinary. My lover and I have a rad connection around being sick. She taught me that some folks look at being sick as an “inconvenience” when she was diagnosed with mono and celiacs disease and worried that it’d change how I felt about her. But that’s far from the truth. It’s quite the opposite, as we bond over conversations of not feeling bad for being sick or just wanting to cuddle because I know where she’s coming from, and can still relate.

If you want to learn more about me or about the queer community you can check out my blog Color it Queer, here.

The Language of Disability

Not that long ago I didn’t consider myself disabled. Society had taught me disabled people were in wheelchairs, had some level of impaired mobility, or had moderate to severe cognitive disabilities. Sure chronic illness had completely taken over my life, but in my eyes I wasn’t disabled enough.

Fast forward to maybe nine months ago, I realized I was in fact disabled by my chronic illnesses and took on the label with pride. For me disabled is both a description of how chronic illness affects my life and a political label. I don’t have a problem with being referred to as disabled, because it’s true.

A lot of people however don’t seem to like the word “disabled.” When I was in high school I applied to become a “Best Buddy” which is a program where you befriend someone in the special education program. Fortunately or unfortunately for me (depending on how you look at it) they didn’t have enough special ed kids for all of the volunteers to have a buddy, so I never got one.

I did go to a training class after school one day, and something from it has stuck with me. They talked about how you shouldn’t ever say someone is disabled, instead say “a person with a disability, differently abled, or handi-capable.” The funny thing about the language of disability is I only see parents/caretakers asking people not to say disabled, never actual disabled people. I’m sure there are disabled people out there who don’t like the term, but I personally haven’t run across any. Many people take on the label with pride and try to advocate for themselves and others with disabilities.

I personally have a problem with the term “differently abled.” Disabled people aren’t differently abled, they are disabled. There are things we can’t do, point blank, end of story. For me some days I can do something and the next day I can’t, but there are also things that I’m never abled to do no matter the circumstances. “A person with a disability” isn’t offensive, I just find it unnecessary. The argument for the other side is that you should put the person before the disability. I feel you don’t have to take that literally. As long as someone is being respectful and isn’t  using a demonizing or belittling tone, then there isn’t anything wrong with saying “disabled people” or a “disabled person.”

Of course you should treat someone like a human being, and not reduce them to their diagnosis. However I don’t fid it necessary to say “person with a disability” every time you speak about disabilities. What are your thoughts? Do you use the term disabled to describe yourself?

Isolated

Chronic illness is isolating.

I have spent the majority of the past five years alone, in a dark room. I no longer attend high school, and I don’t talk to any of my old friends. I’m not saying these things for pity, or sympathy; they are just simple facts.

Chronic pain keeps me from doing or enjoying pretty much everything I used to. I got sick during the transitional time from elementary school to middle school, so making new friends became really hard. Now that I’ve started online school, I don’t see anyone from my old high school or talk to them. The only “new places” I’ve been going are doctors offices – so I don’t think I’m gonna find any new friends there, but hey ya never know.

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After a few months/years friends and family get tired of asking me how I am feeling. They assume I’m gonna better, and forget I’m sick. But I don’t forget; I don’t have that luxury. They get tired of hearing me say “I’m in pain” or feel fatigued. They no longer want to know about my doctors visits or hospital stays. I don’t blame them, the never ending cycle of chronic illness is tiring and generally negative. Friends were the first thing I lost. A few close ones stuck around a couple of years, but now they’re gone too. My immediate family is still here for me, but my extended family never asks how I am anymore. I don’t need/want them to make a big deal about it – but it would be nice if they’d ask about me every once in a while.

Being alone almost all the time makes going out in public hard. I’m sensitive to noise, and the world is one big ball of sound. I never had social anxiety before, but now it’s exhausting being around other people. I feel emotionally drained even being around family. I know I’m gonna have to get over this, because I can’t stay in my room at my parents house for the rest of my life. I want to go to college and get a good job. Both of those things are gonna have to involve being around other people on a daily basis. I can have a negative outlook on life, and when a lot of negative things are going on it makes it 10x more difficult to act cheery and positive. .

If you find chronic illness isolating – you’re not alone. I’m here and probably in my pajamas.

Lots of Love,

Alyssa