Disability Advocate Blog

Gnomes are magical beings, extremely small in stature, often a bit mischievous and playful. When I moved to Portland, I discovered the city has a particular affinity to gnomes. You can find gnome statues all over the town. In fact one of my favorite tea places had a very sweet gnome statue at the entrance. Said gnome sported a fashionable checkered vest with the characteristic pointed hat and stood at approximately 2 feet tall. I have a photograph of myself standing next to it. 

A local Waldorf School has a gnome as their mascot for their basketball team. I find it humorous and somewhat ironic given how height is quite an advantage when playing basketball.

The magical world of Waldorf education is filled with references to gnomes, dwarves, elves and fairies. In kindergarten and first grade the children hear beautifully written and elaborate fairytales. Inevitably there are references to dwarves, such as in “Snow White and the Seven…” As a person with dwarfism, referring to fairytale story depictions and characteristics of dwarves is confusing and quite problematic. 

Having taught in Waldorf schools for many years, I omitted any references to dwarves and consistently used the word gnomes. Colleagues and friends of mine soon began to do the same. One can easily tell the story of “Snow White and the Seven Gnomes.”

Recently I taught disability inclusion to the 8th grade students at a local Waldorf School. An innocent 1st grader stopped in his tracks, upon meeting me in the hallway. I warmly greeted this young student and said, “Hi, I’m Ms. Weber. I’m here as a guest teacher to the 8th grade students.” A few more of his friends appeared and also stopped in their tracks. I then said, “You might not have seen a little person before.” They all nodded silently. I told the children that I knew their teacher and how they must be learning about letters and numbers.  Again they nodded while remaining transfixed.  "Please be sure to tell your teacher that I say hello," I said warmly.  Just before heading back to their class, one of students lingered and responded, “I thought you were a gnome.” I smiled and heard them giggling on their way back to class. An innocent comment that evokes laughter also poignantly reminded me of the necessity of my work. 

I later approached my friend, their teacher, and offered to visit the class. He warmly invited me to meet all the first graders. We had a tender exchange and I shared about my short stature with the class. When I mentioned that I have an average size daughter who also lives in Portland, much to my delight, the children were far more interested in hearing about her.

I recently worked with 7th and 8th grade students and school faculty as a disability inclusion advocate and coach. I had previously been a teacher in this school. As I entered the building, I was met with the statement,“have you seen your students? They are Giants!” I was somewhat stunned and not sure how to respond without offending her. Many thoughts ran through my mind. This well meaning person was referring to a group of students I taught when they were in first grade. They are now seventh graders. Indeed, many of them are tall, all of them are definitely taller than I. What she meant was that the students had grown and matured. Had she used these more accurate words to describe the class, I would have not felt offended. Given that this was a parent with whom I had a friendly relationship, and I was giving a presentation on disability awareness to my former class, I took the high road. I politely responded, “Yes, I’ve seen them and I’m very excited to be bringing disability awareness to these students.” Her comment reinforced that my work is essential and necessary.

Accurate and respectful language are powerful tools when describing a person. As a person with dwarfism, I often find the use of the words big and little to be misused. Big and little refer to size. However, these simple descriptive words can be problematic and carry bias. I found the following definitions in the Webster’s Dictionary for Students.

Big (adjective) bigger; biggest

1: large in size  2: large in number or amount  3: of great importance  4: of great strength or force

Small (adjective) smaller; smallest

1: little in size  2: fewer in numbers or members, 3: little in amount 4: very young 5: not very much  6: unimportant  7: operating on a limited scale  8: very soft and quiet  9: not generous, mean 10: made up of units of little worth 11: humble, modest 12: lower in pride

Indeed small does describe size, very young children are small. As an adult, I am also small and have always been small in stature. Big often connotes strength, power, of great importance. Big is considered the ultimate goal, to be big is “better.” The message given to children who are growing, maturing, becoming more independent and older is “You’re so BIG!” To be big is considered an achievement, something to feel proud about, better than being small.

Within the teaching communities that I have worked, I often hear the youngest children (preschoolers, kindergartners and first graders) referred to as the “littles” or “the little ones” instead of younger ones. Years ago, a colleague once referred to the preschoolers as the “little littles.” I responded,“exactly how little are they?”

I’m less prickly now and acutely aware of the necessity in educating adults to use accurate language that isn’t condescending, pejorative or carries bias. My emphasis is to educate and inform people about these terms and suggest alternative more accurate ones. It takes a conscious effort and a willingness on the other person’s part to change habitual language. It also requires a great deal of tolerance and patience on my part. This is the work I have chosen to do.

Over the years, my daughter, students I have taught and I, have heard poems, watched plays and seen films in which a person’s shorter stature is ridiculed. This also happens for particularly tall people who are taller than what is considered to be average height. 

Years ago, after witnessing a class play in which the students walked on their knees in the attempt to play gnomes, one student, who was short by average size standards, said, “I started to feel bad for myself when they did this and then I looked over at Ms. Weber and thought of how she must feel.” This sparked thoughtful and meaningful conversations. It was then that I started using the phrase “small and mighty.” This same student repeated, “small and mighty. I like that!” After I cooled off and composed myself, I later spoke with the colleague who directed the play. It was a difficult and ultimately important conversation. Needless to say, my colleague felt terrible by his unintentionally hurtful and ignorant actions. He apologized and we moved on.

All my life I have had to educate others about my dwarfism. My disability is a visible one that sparks curiosity. I understand the curiosity. I also will not tolerate disrespect, ignorance or bigotry towards myself or anyone else. I have been fortunate to have many allies including my family, friends, colleagues and the students whom I taught. Through our relationships and open conversations, my students and their parents demonstrated their ability to be advocates for people with dwarfism such as myself. 

*Stay tuned for my blog on gnome culture and an incident in which a seven year old thought I was a gnome.

I was Daniel's elementary school teacher for four years.  He is currently in high school and wrote the following essay when he was in eighth grade.

Personal Expository/Childhood Memory

When I was six years old living in Sonoma, I enjoyed a carefree life. My school days consisted mostly of playing with sticks and sand and sloshing through rain puddles. It was spring, and kindergarten was ending soon. After summer, I would be a first grader far away at an entirely different school.

To prepare for the upcoming school year, my mom made arrangements to meet the person who would be my first grade teacher and my inspiration for the next four years. As my mom and I were driving from Sonoma to San Rafael on Highway 37, we were discussing my new school and my new teacher. While Mom was describing Ms.Weber, she said, “She's an adult, but she's your size." I was curious and confused. “How could she be an adult and a teacher if she is not much bigger than me?" I wondered. In the midst of my mom's explanation, I burst out, “Well, can she drive a car?" "Yes, I think so," my mom replied, "but we can ask her when we see her.”

We arrived at the school and checked in at the office. From there we walked through the breezeway to a separate building near a fenced, flourishing garden. We climbed a few steps, crossed the porch, and walked inside the school library. The room was dark and very quiet. As the door latched behind us, my eyes focused on a small figure moving from behind a large table at the back of the room. She stood before me and extended her hand, saying, "Hello. You must be Daniel. I am Ms. Weber.” It was then that I understood what my mom was trying to tell me.

As we greeted one another, I realized Ms. Weber's warm, soft hand was not much bigger than mine. Her blue eyes, framed by dark blonde bangs, were nearly level with my eyes. She wore a blue patterned dress that hung just above her ankle socks and white tennis shoes. My mom bent down to meet Ms. Weber face to face and introduced herself. She then left the library. After a few moments, Ms. Weber and I also left the library to tour the campus. Walking shoulder to shoulder, we passed a grove of enormous oak trees and the sports field before stopping at a small, wooden play structure. I played for a few moments while Ms. Weber watched. She asked me questions about my life in Sonoma and my favorite things. I had a lot of questions about her too but was afraid to ask. As if reading my mind, Ms. Weber said,"Do you want to see my car?" With eyes wide, I nodded silently. 

Ms. Weber led me to a blue car in the parking lot. It looked like any other car from the outside, but inside was an extra set of pedals that extended from near the floor to just below the steering wheel. "These help me control the car and can be taken off and put on another car,” Ms. Weber said. I was fascinated but speechless. It was then time to leave. Ms. Weber shook my hand while looking deep into my eyes and said, “Lovely meeting you Daniel. I look forward to seeing you next fall.”

Fall came quickly, and first grade was not nearly as carefree as kindergarten. Despite some challenges, Ms. Weber and I came to love and appreciate one another over the next four years. I was heartbroken when I learned that Ms. Weber would be moving to Portland. Although she is far away, she is always in my heart and continues to inspire me to face my challenges and rise above them.

As a child, I vividly remember watching "The Wizard of Oz" with great anticipation. We had a color t.v. and I was able to see the glorious technicolor when Dorothy first landed in Oz. I thought the Wicked Witch of the West was powerful. I adored the Scarecrow, the Tinman and the "cowardly" Lion. When the munchkins appeared, I felt shock and humiliation. People with my disability were portrayed as childlike, high pitched, awkwardly moving caricatures. The actors who played the munchkins weren't even named in the final credits. People with dwarfism continue to be depicted as clowns, elves, gnomes and other derogatory caricatures. We are often mocked and ridiculed in the media.

Then a historic moment happened, a woman with my type of dwarfism, Sinead Burke, was featured on the cover of the September, 2019 issue of “British Vogue” as a “Force for Change.” Sinead was one of 15 women featured. This came at a time when people of diverse backgrounds were at long last acknowledged and represented in mainstream media; disabled, gay, queer, transgender, African American, Asian American, Indigenous and Latinx.

This is significant and bears witness. Sinead represents beauty, glamour and intelligence. She is worthy and welcomed into the fashion world; the able-bodied, change your body, fit your body into a mold world. Sinead is actively changing the world of fashion to address our bodies.

Peter Dinklage received international recognition for portraying Tyrion Lannister on the television series Game of Thrones. He received a Primetime Emmy Award for Outstanding Supporting Actor in a Drama Series a record of four times. Peter Dinklage also received a Golden Globe Award in 2011 and a Screen Actors Guild Award in 2020. Dinklage is an exceptional actor who is honored for his craft. He also has my type of dwarfism. Peter Dinklage's achievements stand in stark contrast to the more common and historic depiction of other actors with dwarfism. 

In 2019, Ali Stroker became the first wheelchair-using actor to appear on a Broadway stage. She is also the first to be nominated for and win a Tony Award. Ali Stroker won best performance by an actress in a featured role in a musical, for her role in “Oklahoma.” She was part of the ensemble cast, dancing in her wheelchair with able bodied actors, visible to the world.

These images and portrayals of people with disabilities give me hope and reflect our true humanity.

Many years ago, my daughter Lily, was given the assignment to write about her cultural identity for her college sociology class.  She wrote about her white and Puerto-Rican heritage. To quote her directly:

"I am an able-bodied, motivated, compassionate woman. This identity encompasses both the physical aspect of myself as well as inner aspects of my cultural identity. I define culture as behaviors, values and beliefs, that are all influenced by race, enthnicity, gender, socioeconomic status and ability. One aspect of my life that shaped both the internal and external features of my cultural identity, is being an able-bodied and average-size daughter of two parents with dwarfism. I realized from an early age that my parents were different from most parents of friends' my age. Anytime the three of us were out in public, whether it was going to a cafe, or even taking a walk around my neighborhood, children and adults alike would stare, point and even laugh at my parents because they looked different. In the grocery store a child might say, 'they look funny' or 'what are they?' and my parents would calmly explain that their bones didn't grow as much as most peoples,' they were different and that was okay. Parents of these curious children would look abashed and apologize uncomfortably for their child's behavior. From this young age I learned the importance of being respectful towards others who appear different and the extent to which not being respectful can impact an individual. I also developed a great compassion for my parents and others who experienced any sort of oppression."