Jennifer Maravillas, "Our Bodies, Our Minds"

The Women’s March on Washington and why I wish I could be there

I can’t march at the Women’s March tomorrow, even though I’m only an hour or so away from Washington D.C.

Not because I don’t want to. No, I desperately want to.

As a little girl, feminism meant my mom was having her Mormon Feminist Book Group over and they were going to laugh and be loud, but if I lurked in the hallway, my mom might see me and they’d have a cookie or mint brownie for me.

When I was eight, I declared that a women’s right to choose was very important to me after seeing the phrase listed on a poster about Al Gore’s campaign promises my brother made for school. My mom laughed and told me to tell that to my dad.

When I was in my early teens, my mom had talks with me about the concepts of modesty and “purity”—about how it wasn’t my responsibility to keep a boy (or even a man) from having “impure” or inappropriate thoughts about me. She protected me from unfair burdens society wanted to put on my small, preteen shoulders.

Anytime my mom took me anywhere, she’d point out women she thought were special or significant. “See, you want be like her when you grow up,” she’d tell me. Occasionally she’d throw in, “she’s gonna be rich,” with a smile.

These types of moments shaped my childhood, my teenage years and my young adulthood with memories of being taken care of, being taught by, and being mentored by strong women I respect, admire and love. I’m proud of this history. This history has taken my definition of feminism from free mint brownies to equality of genders, kindness and respect for everyone.

I would love to march tomorrow because I’m in the process of learning how to grow my activism and advocacy. I’m getting more involved in the democratic process, I’m calling my representative and senators, I’m sending e-mails, I’m signing those petitions.

I want to march because Women’s Rights are Human Rights.

I want to march because I’m learning more about feminism beyond my suburban white girl feminist context; I’m trying my best to study intersectionality with race, gender, sexuality, etc. while also learning about how feminism and disability intersect for myself. I’m doing my best but it will be a lifelong journey.

I want to march in honor of my favorite teachers who broke through the brain fog and anxieties I had with their patience and compassion. I want to march in honor of the mentors I had at every job I’ve ever held, who have helped me learn to be a better person and better employee. I want to march in honor of the doctors and nurses I have entrusted with my health with–and the study that says female physicians might save more lives.

I want to march because I have been loved, cared for and raised by strong women. (Mostly one woman. Hi, Mom. You reading this?)

I want to march because I am so passionate about protecting young girls and their futures. Interacting with teenagers in some of my volunteer work is one of my greatest joys and the young women I have met suffer through so much but still offer their time and support without a second thought.

I want to march because I want to represent disabled women, particularly those with dysautonomia. I want to march because I want to champion how important the ADA is and how critical it is for the health of our country and our people.

I want to march because I want to be a part of something bigger than myself. And also because their graphic design team is totally on point.

*

I’m not well enough to march on Saturday though.

My body is too symptomatic to make the trip. I can only stand up for about 15 to 20 minutes right now and can only manage walking a couple of blocks before I need to rest for a while.

My heart will be at the Women’s March in D.C. and at all of the sister marches where I have friends—and in New York City where a lovely couple is marching on my mom’s and my behalf through the #MarchingWithMe program.

My gratitude is with everyone there, showing up in numbers to make a point: that we are stronger together, that we believe that everyone deserves a healthy and happy life just because they exist. I thank those representing disability rights and health care rights from the bottom of my heart.

It means everything.

*

Artwork by Jennifer Maravillas, “Our Bodies, Our Minds”


The ADA is a right, no matter what state you’re in

This is not a blog post about dysautonomia. This is political, and if that upsets you, I’m only a little sorry.

There aren’t words to describe how upset it makes me when I watch an Education Secretary Nominee say that complying with the Americans with Disabilities Act, a federal civil rights law, should be left to the states to decide. Whether she understood the question or not—it makes it clear that students with disabilities are not her priority, and that’s so many layers of unacceptable for the person leading the Department of Education to believe and say.

School was not easy for me because of my health. I was undiagnosed with dysautonomia growing up, and had several other very diagnosed, very real illnesses happening concurrently with the undiagnosed malfunctioning of my autonomic nervous system. I dealt daily with a digestive system that didn’t like me very much and a cluster of mental illnesses—ADHD, OCD, anxiety and depression. Oh, and I was a teenager. (Mix until blended.)

I missed school frequently. Not because I was lazy or a bad student, but because I could barely function so many days.

I had a difficult workload—honors and AP classes. Difficult extracurriculars—I was on my school’s newspaper and had a leadership role every year I was on staff. It was my passion and it challenged me like nothing else. But I wanted it that way.

My guidance counselor told me to take it easy, that I wouldn’t be sick, that I wouldn’t be stressed if I took an easier course load—but I knew myself better than she did. I knew I would be stressed no matter what, because that’s how chemical imbalances work. I was going to do this my way.

It took me four years to get my Section 504 (another story for another day) but it was the best blessing I’ve ever received—it enabled me to customize my education to best suit my needs. My teachers were given the allowances and rights they needed to help me. They were allowed to give me spare textbooks to keep at home and in my locker, they were allowed to give me an extra day for my papers every now and then, they were allowed to let me work on things a little bit differently, so long as we kept in touch.

Because of my Section 504, we were able to switch my schedule half way through my senior year to half-days to try and promote my health. We were allowed to drop classes that weren’t necessary for graduation that were too much of a hindrance at certain points.

I missed over a month of school my senior year because of illness and disability. My assistant principal told me I may not graduate. But because of the accommodations my teachers made and the plans we made together, I graduated with a 3.7 GPA and as an AP Scholar with Distinction from the CollegeBoard.

My high school graduation, one of the happiest days of my life

*

I share this story because I am not special and should not be a special case or special story.

My graduation success should be the norm.

Students with disabilities across the country should be granted Section 504s (much sooner than I was, because four years of fighting is absurd) and experience every bit of protection from the Americans with Disabilities Act, as it is a federal civil rights law.

It should not vary by state. It should not vary by county or by school or even by guidance counselor.

The Nominee for Education Secretary should feel these things passionately in their heart and be the strongest proponent for them. The disabled are marginalized members of society and to be disrespected this way is unacceptable.

I won’t be quiet about this. I am so angry.


Sorry I didn’t answer your question

I’m a rambler when I’m nervous. And when I’m not nervous. When I’m perfectly fine, when I’m happy, when I’m angry, when I’m every emotion, I usually talk.

When someone gives me a question I don’t have a good answer to or don’t want to answer, I still answer. I’ll give them an answer to a related question without addressing the fact that I’m not even answering the thing they inquired about. If I’m slick enough, they won’t even notice.

But maybe now, after this declaration, they will.

Sometimes friends ask me about how I’m doing with POTS—and even though I’m always game to talk about Dysautonomia International and the work they’re doing, or maybe cool new research, or the fact that my arm fell asleep in under 30 seconds last night–I know my friend is kindly asking about my chronic health problem.

And here’s where the real baggage comes in.

chronically wide eyed and vulnerable

When there’s been no progress with POTS, I don’t want to tell them that. I hate that there’s been no changes. I hate that there’s nothing new to report in my health, I hate that sometimes it’s even getting worse, because then I’ll have to explain that yeah, sometimes that just happens, and no, it’s not my fault (even though I occasionally blame myself when I shouldn’t) because I don’t want them to blame me either (even when I know my friends and decent humans would never do that).

I run away from the reality of “chronic”, I run away from the reality of life and I divert their attention.

They ask about POTS, I answer about something else.

Sometimes I answer about the progress I’m making in therapy, how I’m not standing still or regressing. How I’m moving onward, forward; how I’m doing something that they can be proud of—even though the very act of getting through a day with one chronic illness, no less a handful, is something they can be proud of their friend for.

Because the vulnerable side of me feels like if I can’t produce results in one area, I better produce results in the other.

Today is a day where I can see things clearly, and I want to say and reaffirm to myself and to anyone who might struggle like I do at times: please don’t feel like your life has to be strictly results oriented. Making an effort, taking care of yourself, being a kind person matters so much more than producing tangible results in work or in health or in any realm. If you have a chronic illness, leave the results to the doctor. All you’re responsible for is effort, that’s all anyone can ask of you.

*

I didn’t make any formal resolutions for 2017 on New Year’s Eve, but every year as I get older, I realize how important it is for me to be nicer to myself. I want to treat myself today like I would treat the younger version of myself—protectively and with patience and compassion. I look at my younger self and want to wrap her up and say “it’s going to be OK, just hold on!”

I want to have those same feelings for myself now, and by having those feelings, I think I’ll be able to be more honest with myself and with my friends.

And maybe I’ll get around to answering your questions head on.