#7D4H - Marian Brown on #HiddenDisability

Last week, on March 23rd, I began writing about “hidden” disabilities - focusing on learning disabilities (LD). In that blog I wrote about how no two experiences with LD are the same. Correspondingly, it is only fitting to share various narratives that glean light and perspective on the topic of LD. 

Today, I’ll share my own.

I grew up in Upstate New York in a city called Rochester, far closer to the Canadian border than NYC itself. Here I was raised in an educational system that was vibrant, supportive, well-resourced and nurturing (for the most part).

At home I grew up with two exceptionally charismatic, intelligent and decorated parents- my mother a Professor of Social Work at the University of Syracuse and my father a surgeon at Strong Memorial Hospital. Both of them gaining terminal degrees in their respective fields, both were sagely aware of learning differences and needs.

From the day I was born I saw the world with a slightly different colored lens. When described by my teachers, babysitters and the like, highly frequented adjectives included: exceptionally creative, empathetic, considerate, strong-willed, and detail oriented with a great imagination.

I straddled the line between creating a world of my own and living in the one that the rest of the universe participates in. I was gregarious, but also an observer. A builder, but also curious to destruct. Verbose at a young age, finding the English language fascinating, often making up my own words. Artistically “gifted” showing atypically developed fine motor skills, sense of color, and composition (yes, my finger paintings were awesome).

However, I couldn’t read. I had a hard time memorizing the alphabet, or anything for that matter. I couldn’t hold auditory commands in my short term memory. I also had a really, really difficult time sitting still, which my peers seemed to do effortlessly.

Seeing these “signs” of both high intelligence and deep-rooted struggle, my parents decided to get psychological testing for learning disabilities done towards the end of my kindergarden year. My teacher; a grown-up version of myself, insisted that my parents just needed to be patient- that I would “get it” in my own time.

My parents were persistent with their investigation, knowing what implications a late diagnosis could have in both my ability to learn and my social experience in school if not “caught” now.

I sat through incredibly boring tests that lasted for days (the Welschler Adult Intelligence Scale- WAIS). I still vividly remember the digit span- where they read a string of numbers to you and you repeat it back, first forward and then backwards. Despite the effort I exuded, my brain simply could not get past three numbers in one string. Then there were the mathematical exercises, where I would answer relatively simple questions without aid of a calculator, and a timer running. I knew that given enough time I would always come up with the right answer- however, I never was able to complete them in the amount provided.

Even at the tender age of five I remember being deeply perturbed following the testing, demanding answers from my parents as of to what it was all about. My parents supported me with love and said they were “figuring out the best way for me to learn so that everyone could see how smart I am”.

Well, the test results highly confirmed my parents hypothesis. In certain areas I scored off the charts in the ninetieth percentile for my peer group (comprehension, visual thinking strategies). Then there was the complete other end of the spectrum… the categories (like the number span described above) that were abysmally low, coming in at the fifth percentile for my peer group. At the time, I really had no idea what this all meant. 

My parents brought a book for me - Mel Levine’s “All Kinds of Learners” that was an extension of Howard Gardner’s Multiple Intelligence Theory. They explained to me, in detail and with great patience, that I was indeed smart- that everyone was sure of, but that certain things in school were going to be more difficult for me to “unlock” with the way my brain works. However, they positioned that it would be fine because our strategy was to focus on the things and ways that I learn well- being bodily kinesthetic and visual spatial relationships.

I started going to resource room to gain additional support, mainly in reading. My teachers, well informed of my LD diagnosis: auditory processing deficits, dyslexic tendencies, and a twinge of hyperactivity (twinge is an understatement) created support systems within the classroom to also help me succeed.

Two natural accommodations surfaced. 

The first was art, the medium in which I could always express myself and my thoughts despite having difficulty reading and writing at that stage in my life. I also had met my best friend, Sara Ferrarone, who had seemingly “complimentary” disabilities. We would create stories together - she was a great writer and I would illustrate. In so many ways, we became deeply embedded supports in both of our social and academic lives. We had a beautiful partnership, one that I have come to know is exceptionally rare. I wish every student struggling with LD (or every person in this world, for that matter) had their own Sara. 

There was also the struggle. The early mornings before school with my parents reading to me as I dozed off, knowing that I couldn’t get through the reading on my own (this would continue until the early years of high school). The anxiety and panic attacks that I wouldn’t and couldn’t get my work done on time like my peers, failing to show my “ability” as a learner (which was exacerbated throughout my teen years, finally coming to a head and dissipating as a young adult in college). There was also the social stigma associated with being pulled out of class for needing additional support (namely felt in middle school, which are cruel years for most).

Thankfully, in elementary school, I had an incredibly strong educational environment. It created a safe space where all of us could learn and our skills were maximized. I was not as lucky in middle school where I lost the “social supports” and fell into what felt like bullying from teachers who were “trying to teach me a lesson” about organization- publicly penalizing me if I forgot a book for class.

I didn’t notice my LD in elementary school because the school was designed to be inclusive. Middle school was a very different story.

Thankfully, I survived middle schools- as did my parents and my peers. Arriving at high school was a welcomed change. Maximizing my natural abilities I loaded up on art heavy class work, taking honors in the courses that were my strongest, and then more “middle of the road” classes in the coursework in which I needed more time. With my teachers we were able to craft an educational experience that fit my needs and my abilities. 

In addition to being an artist I was also an athlete and had many other “facets of identity” outside of my LD. This was incredibly important for me to feel successful and continue to gain self confidence.

My senior year of high school I ended up moving to a boarding school in Colorado in order to train for skiing on a highly competitive level. At this particular school my LD adversities met a new level. Because I was high performing and was receiving good grades previously, my teachers; namely the academic dean of the school, believed that I “did not have LD” and that “LD in general is an excuse for being lazy”. Correspondingly, they began to strip down my accommodations and take them away (which they can technically do as a private school), one by one.

Nothing could not have been more unproductive to my ability to learn effectively, nor more detrimental to my understanding of self, than this particular school, and my relationship with this educator. However, there is a bright silver lining- being that it pointed me on my career path of building and supporting inclusive learning communities through the arts. Additionally, it greatly honed in on my ability to advocate effectively, and allowed me the opportunity to face my anxiety face to face.

The reality is, on the whole, I have had exceptional educational opportunities. I grew up in a very supportive family. Yet, it was an undeniable struggle even with the opportunities and supports I had. In resource poor settings, the early identification I experienced simply is not on the table. I am far from advocating that the American education system is perfect- it is often the antithesis. However, in my particular education, I was incredibly lucky to be in the public school system I was, to have the educators, parents, brother and friends that I did.

Growing up with, and living with LD, has helped me to hone a highly developed awareness of learning needs- both for self and others, making me a much stronger educator.

It taught me to advocate effectively for what I believed in, to not ever be afraid to stand up for what you know is right- even when it challenges authority. 

Above all, it helped me to deeply appreciate effective and ineffective educational structures, and recognize how far we have to go until we reach educational equity both nationally and internationally.

Education is a human right and must be upheld as such. 

Call to action: Do you have important information around one of our seven causes: HIV/AIDS, Mental Health, Nutrition, Heart Disease, Maternal Child Health, Cancer, Disability, that you want to share with a wider audience? Do you or a loved one currently live and/or struggle with one of these causes? Do you work in research, advocacy, prevention, treatment or care? We want to hear from YOU! Write to us today: 7dresses@artsconnectinternational.org to become a featured blog writer.  Another way to get involved is to wear the color of the day in solidarity. Take a picture of yourself in the color of the day and Tweet it @ArtsConnectInt, tag us on Instagram @ArtsConnectInt, or send it to us on Facebook.   

About 7 Dresses 4 Health (7D4H): 7D4H is a year-long arts and health education campaign lead by visual artist, Marian Brown, in conjunction with Arts Connect International. The objective of the campaign is to promote inclusive community practices through adDRESSing health artistically and collaboratively. To learn more about the genesis of the project, read Marian’s New Year Blog

About today's look: All of the dresses for 7 Dresses 4 Health were designed and sewn by Kim's Fashion Design. Love the look? Visit Kim at 100 Huntington Ave, Boston MA 02116, call her at (617) 267-9299 or email her: info@kimsfashion.com. Mention 7 Dresses 4 Health for a special discount! 

Campaign Update (2017): All 7 Dresses 4 Health blogs were migrated from a former site, so the sharing analytics are inconsistent from when they were first published. We apologize to our guest bloggers, and readers, for this inconvenience. That said, the campaign garnered an average of 5K hits per blog, over 500,000 readers throughout 2015! Additionally, the average number of shares per guest blog was over 150x on social media (through Facebook and Twitter). Thank you for making this incredible campaign possible - and for all that it was for so many. With gratitude, Marian & the ACI Team