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Awareness Guest

DWARFISM ARTS AND ADVOCACY: Creating Our Own Positive Identity

Dwarfism Arts & Advocacy cover
Guest post by Dr. Erin Pritchard, Senior Lecturer in Disability Studies, Liverpool Hope University, United Kingdom

This book brings together the voices and experiences of people with dwarfism, working in the arts and beyond, to demonstrate how they challenge and resist problematic stereotypes associated with dwarfism in society.

Dwarfism is a condition that most people know of, yet know very little about. General society, including children, learn about dwarfism through cultural representations of the condition, popular within the media, including films and television shows. Furthermore, due to various internet platforms, new derogatory forms of dwarfism entertainment are emerging (Adelson, 2005).

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However, there are advocates with dwarfism who are using various media platforms, including the internet to challenge these cultural representations and raise awareness. This book brings together the voices of people with dwarfism challenging ableist representations of condition.

I felt that it is important to give people with dwarfism a voice, as society tends to favour the voices of people with dwarfism who partake in derogatory forms of entertainment (dwarf tossing, midget wrestling), which only reinforces problematic beliefs. However, as Adelson (2005: n.d.) points out, ‘among many persons with dwarfism today—determined to vanquish the ridicule that has permeated their history—the current association of dwarfs with freak-related entertainment has provoked irritation, distress, and even outrage’. Thus, this book aids in advocating for a better representation of dwarfism though providing a collective voice and range of experiences.

Disability arts and the media are important tools in challenging problematic stereotypes of disability, as well as giving disabled people a platform for creating their own representations. However, whilst there is growing literature on the subject, there is scarce literature specifically focusing on people with dwarfism in the arts or within advocacy roles. Adelson (2005) points out that general society, including the disability community, are not fully aware of the push people with dwarfism are trying to make to challenge and change cultural representations of the condition. This book helps to raise awareness within academia and society through providing a collective voice and contributing new knowledge to Disability Arts.

Each chapter is written by an artist /activist with dwarfism, who reflects on the work they do, which includes, but is not limited to a role or exhibition they have done and why. For example, several chapters focus on the importance of pursuing acting roles which do not reinforce stereotypes associated with dwarfism, such as Santa’s elves. Others include various forms of art work, which encourages the audience to reflect on how they perceive people with dwarfism. Each chapter offers their thoughts, experiences and importantly recommendations to improve representations of dwarfism and to challenge ableist attitudes within society. Numerous chapters show what people with dwarfism are doing to make the arts more accessible. Other chapters focus on the other forms of advocacy used to raise awareness, such as the importance of blogs and podcasts. Furthermore, the struggles of advocacy work and challenging long held beliefs are explored.

Addendum: Chapter Titles and Authors:

Introduction.
Erin Pritchard (Liverpool Hope University)  

Chapter 1 – Curating New Perspectives: How My Dwarfism Led Me to Disability Art.
Amanda Cachia (Otis College of Art and Design, California Institute of the Arts)

Chapter 2 – Little Big Women: Condescension – Sculpting the Oppositional Gaze.
Debra Keenahan (Western Sydney University)

Chapter 3 – Where are the Creative Opportunities for People with Dwarfism Lived Experience in Participatory Arts Funding?
Steph Robson (Disability Artist – Hello Little Lady)

Chapter 4 – It’s Behind You: How Equity and an Education Made Me More Than Just a Suit Filler 
Alice Lambert and Erin Pritchard

Chapter 5 – Midgitte Bardot: Using Drag Performance to Challenge People’s Perceptions and Attitudes of Dwarfism 
Tamm Reynolds and Erin Pritchard

Chapter 6 – The Path to Success Is Long and Winding: Challenging Stereotypes and Fighting for Disability Equality in the Entertainment Industry 
Danny Woodburn and Erin Pritchard

Chapter 7 – Get the Balance Right: The Change in How People With Dwarfism Are Depicted From Limited, Damaging and Negative to Realistic, Creative and Positive 
Simon Minty

Chapter 8 – Creating Our Own Path: The Easterseals Disability Film Challenge 
Nic Novicki and Erin Pritchard

Chapter 9 – Dwarfism Advocacy: A Life Tenure
Angela Van Etten (Former President of Little People of America)

Chapter 10 – Exploring Dwarfism Representation in Social Media: Intentionality and Advocacy as a Digital Content Creator Kara B. Ayers (University of Cincinnati)

Chapter 11 – Podcasts as a Platform for Advocacy.
Jillian Curwin (Founder and Owner of Always Looking Up)

Chapter 12 – The Patchwork Representation We Too Often Miss 
Sam Drummond

Chapter 13 – “Would You Befriend Me, Date Me, Hire Me If I Hadn’t Had My Bones Broken & Stretched to Look More Like Yours?”
Emily Sullivan-Sanford (Freelancer)

Epilogue
Erin Pritchard (Liverpool Hope University)

Ready to read more?

Emerald Publishing is offering a 30% discount in the Emerald Bookstore with promo code EME30.

Categories
Awareness

DISABILITY AWARENESS: A Years’ Worth in One Month

awareness

Knowledge and understanding that something is happening or exists” is Merriam Webster’s definition of awareness. So why do we need awareness months for various disabilities? Surely people know and understand that these disabilities exist. But the prevalence of months focused on specific disabilities suggests otherwise.

Take May, for example, which has multiple disabilities promoting awareness in the United States. It’s tough to keep track of them all. Hence my decision to list 12 disabilities with awareness months that promote understanding, acceptance, prevention, diagnosis, treatment, resources for living with the condition, advocacy, and/or a cure. Together we can make life better for affected individuals and family members.

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1. Asthma and Allergy

      More than 100 million Americans have (1) asthma, a chronic condition that affects the airways in the lungs; or (2) allergies which cause the body’s immune system to see a substance as harmful and overreact to it. https://bit.ly/3QQhdfD

      2. Arthritis

        Nearly 60 million Americans have arthritis which involves the swelling and tenderness of one or more joints causing joint pain and stiffness. https://bit.ly/4bpKOov

        3. Mental Health

          Nearly 50 million American adults have a mental illness. Disorders range from anxiety, depression, eating, personality, post-traumatic stress, and psychosis. https://www.mhanational.org/mental-health-month

          4. Speech-Language-Hearing

          Communication disorders affect about five to ten percent of Americans (15 to 30 million). By first grade, about five percent of children have a noticeable speech disorder. About three million adults stutter and about one million adults have aphasia which impacts speech, writing, and understanding language. https://bit.ly/3V8fCEg

          5. Fibromyalgia

          Fibromyalgia affects about ten million Americans and involves chronic pain; fatigue; sleep disturbances; sensitivity to touch, light, and sound; and cognitive difficulties. https://www.fmaware.org/fibromyalgia-awareness-day-history/

          6. Celiac Disease

          About three million Americans have Celiac—a chronic autoimmune disease—which affects the small intestine making it difficult to digest food. https://celiac.org/mcam/

          7. Lupus

          1.5 million Americans have Lupus, a chronic disease that can cause inflammation and pain in any part of the body due to the immune system attacking healthy tissue instead of fighting infections. https://www.lupus.org/lupus-awareness-month

          8. Strokes

          Every year more than 795,000 people have a stroke which damages brain tissue due to loss of blood flow to part of the brain. https://bit.ly/3QOtcdy

          9. Bladder Cancer

          An estimated 725,000 people live with bladder cancer and more than 80,000 new cases are diagnosed each year. https://bcan.org/news/news/

          10. Ehlers-Danlos Syndrome (EDS)

            EDS affects fewer than 200,000 people and is a group of 13 heritable connective tissue disorders. Joint hypermobility, skin hyperextensibility, and tissue fragility are common to all types. https://www.ehlers-danlos.com/what-is-eds/

            11. Melanoma Skin Cancer

            About 100,640 new melanomas will be diagnosed in 2024 and about 8,290 people are expected to die of melanoma. https://www.aad.org/public/diseases/skin-cancer/prevent/how

            12. Cystic Fibrosis

              Close to 40,000 Americans have cystic fibrosis, a rare genetic disease that affects the lungs, pancreas, and other organs. https://www.cff.org/intro-cf#overview-of-cf

              Image credit: Word images by John Hain from Pixabay

              You may also want to read:

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              Awareness

              FOUR MILLION NEW BOOKS A YEAR: Write Reviews to Help People Pick What to Read

              advice

              Reviews help customers make good purchasing decisions. As the author of a dwarfism memoir trilogy, I am especially interested in book reviews and the designation of May 3 as “Write a Review Day.” Even though the day was founded to help the travel industry recover after the COVID-19 pandemic, it doubles as a guidepost for readers choosing among the four million or so new books published annually in the United States.

              This is an opportune time for me to thank readers who wrote a review of my book, “ALWAYS AN ADVOCATE: Champions of Change for People with Dwarfism and Disabilities.” Maybe this sampling of book review excerpts will help you decide to read the book:

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              Angela writes as if she were a close friend sharing her story over a cup of tea—infusing humor and anecdotes. . . Always an Advocate doesn’t sugar coat the work needed in accomplishing great change, or the turmoil of politics that can exist . . ., but it does show us that it is possible. . . Angela’s work speaks to me like few books have.
              ~ Juliana (September 24, 2021)

               “Angela does a magnificent job bringing you into this story. . . It’s unique, unheard, and untold. . . Must read!”
              ~ Clinton (September 24, 2021)

              I was pleased to get a copy of Always an Advocate by activist and lawyer Angela Van Etten. . . Drawing on her own personal experiences, alongside Robert, Angela demonstrates that the fight for equality for disabled people is not easy. I would definitely recommend this book to anyone interested in disability advocacy.”
              ~ Erin (September 15, 2021)

               “Angela’s many examples of her pursuit to realize remedies by agencies, boards, and governments demonstrate that achieving success in getting decisions-makers to correct problems or remove barriers is rarely easy, never automatic, and seldom a solo effort, however she shows all of us that it is do-able [and] shows us the way.”
              ~ Lee (July 29, 2021)

              In a year where we have seen a multitude of books tied to disability, and the disability rights movement, come out, Angela stands alone as THE guide book for how to actually make the changes that we need to see in society. . . I strongly recommend this book for any growing advocate from the ADA generation and after. It reminds us that the battles that we fought aren’t easy, and that the work is far from done, while also arming you with the level of analysis and thinking we need as a movement to succeed. . . Pick it up today.
              ~ Rebecca (October 24, 2021)

              “Angela has once again knocked it out of the ballpark with her new book.”
              ~ Michael (September 27, 2021)

              This is an amazing book about passion, patience and perseverance. . . She shares her faith and humor throughout the book as she talks about her journey as an advocate. . . She fought for banning dwarf tossing, improving reach barriers in public facilities and advocating for those with ADHD, just to mention a few.”
              ~ Lois (September 9, 2021)

              Image Credit: Qualityrendersmicrostock from Pixabay

              Bonus Book Reviews

              “This book gives a peek into Angela’s life, the life of a Little Person, and documents her willingness to jump into the battle to help those who are struggling due to any disability. . . Reading this book gives me hope that one day there will be ‘Equal Access’ for all.”
              ~ Debby (September 16, 2021)

              The encounters of ATMs, parking spaces, and access to public buildings are a few of the giants Angela has had to overcome. . . Angela gives God the credit for making the impossible happen. . . Read this book and know that you too can make a difference in advocating for what is right.”
              ~ Brenda (September 30, 2021)

              We should all be thankful for her grit and tenacity. A book everyone should read!!”
              ~ Becky (September 27, 2021)

              Always An Advocate’ an important book, well written, easy to read, funny at times and above all conveying Angela’s passion for fighting for and defending the rights of disabled people. I certainly recommend it.”
              ~ Geoff (September 16, 2021)

              This book will encourage you to step off the sidelines to become an advocate.”
              ~ Ava (September 16, 2021)

               “I read the whole book in one sitting. The range of her concerns and actions include not only issues of concern to little people, but those of people of many other disabilities and ages.”
              ~ Dianne (September  16, 2021)

              For information on Angela’s books, blog, and media go to her website at https://angelamuirvanetten.com/books/

              Categories
              Awareness

              Share the Love of Books

              Book

              February 14th is for sharing the love of books and reading and, of course, for sharing love with your valentine. It’s hard to miss Valentine’s Day, but how did I miss International Book Giving Day? It’s been active since 2012 and is celebrated in 44 countries, including the United States. Whatever the reason for missing it in the past, now I know to use it to increase access to and enthusiasm for books.

              As a child, my siblings and I didn’t go to bed with square eyes from watching too much television, rather we went to bed with a book to read. Little did we know how much this contributed to our language development, critical thinking ability, social cues, emotional intelligence, and imagination. When Amy Broadmoore, the United Kingdom co-founder of Book Giving Day, noticed how many children didn’t have books to read, she made it a goal to get as many new, used, and borrowed books into the hands of children as possible.

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              So how do people celebrate Book Giving Day? Here’s a list of ideas:

              1. Gift a Book: Select a new or gently used book that you love or think someone else would enjoy. Give it to a friend, family member, coworker, or child in your community. To gift books on dwarfism, check out my website for ideas:

              2. Donate Books: Local libraries, schools, shelters, foster homes, orphanages, thrift stores, or community centers are typically ready to accept book donations. You can also donate to non-profit organizations that focus on sharing books with people without access to them, such as: Books for Africa, Book Aid International, the Book Bus, the Prison Book Program, and Kids Need to Read.

              3. Organize a Book Drive: Gather books from your community and organize a book drive. Encourage others to contribute, and then distribute the collected books to those in need.

              4. Leave a book somewhere: You may “accidentally” leave a book in a doctor’s office waiting room, on public transit, and other places for someone else to pick up and read. You can inscribe the book on the first page to show whoever picks up the book it’s theirs to read and pass on to the next person.

              5. Organize or join a book exchange program (for children or adults): It’s not only about handing out books; you can also trade them. See for example, Bookmooch which allows people to receive used books in exchange for donating their own books.

              As for me, I commit to gifting one of the books in my dwarfism memoir trilogy (winners choice as to which one) to the first person who emails me this week at angela@angelamuirvanetten.com to report celebrating Book Gifting Day in one of the five ways listed above. 

              Photo credit: Image by GraphicMama-team. https://pixabay.com/vectors/book-character-glasses-show-1773756/

              You may also want to read blog posts about books by Angela Muir Van Etten:

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              Awareness

              International Dwarfism Awareness Day

              Billy Barty & friends

              Every year since 2012, International Dwarfism Awareness Day celebrates little people on October 25th, the birthday of Billy Barty, the founder of Little People of America (LPA). My contribution to this day is to highlight some tweets and articles that have been published through the years.

              As you celebrate in 2023, spread awareness on social media with #DwarfismAwarenessDay and #DwarfPride.

              TWEETS

              Little People of America:

              Our 𝟐𝟎𝟐𝟑 𝐃𝐰𝐚𝐫𝐟𝐢𝐬𝐦 𝐀𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 𝐭-𝐬𝐡𝐢𝐫𝐭 is available now! Show off your LP pride and that #LPAisLOVE! Orders can be placed at https://bit.ly/3Qtj3DM. August 5, 2023.

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              The National Advisory Board:

              1. Dwarfism Awareness Month, serves as an invaluable opportunity to generate awareness: dispelling myths, and stereotypes while working to build a greater understanding and acceptance of people with dwarfism. October 16, 2023.
              2. . . . “We are people with all the hopes, dreams, passions, and faults of everyone else,” LPA Founder, Billy Barty. October 12, 2023.

              Naffe Tusbola Foundation:

              People with dwarfism still face barriers that limit their choices & opportunities TODAY! Please RT to stand in solidarity with Ugandan LPs who are socially & economically excluded, taunted & treated as lesser than others. October 25, 2022.

              Danielle Marie Webb:

              We must challenge the everyday experiences of ignorance, discrimination and hate. And celebrate the phenomenal contribution to our communities. October 25, 2022.

              Gareth Mason:

              Today people with Dwarfism still face social and physical barriers that stand in the way of choices and opportunities, this has to change! October 25, 2021.

              Angela Muir Van Etten:

              LPA Milestones. https://angelamuirvanetten.com/lpa-milestones/ from “Always an Advocate,” Part I, Volunteer Leadership Challenges, chapters 1 & 2, available on Amazon US and UK. October 25, 2021.

              Jennifer Arnold, MD:

              . . . Join our family in celebrating little people – unite in overcoming the barriers, discrimination, & misconceptions! October 25, 2020.

              Lawrence Villepto

              LES preschool teachers wore green in support of Nat’l Dwarfism Awareness Day & Month, and read “Not too big … not too small … just right for me,” designed to educate students about dwarfism. October 27, 2020.

              Steph @HelloLittleLady BSc (Hons) MA

              . . . In this thread, I wanted to share our perspectives of being a Dwarf through participants’ t/photos from the #YoureJustLittle exhibition. 1/ October 25, 2019.

              How am I celebrating #DwarfismAwarenessDay? With my family, having an ordinary day, getting on with life, changing the world one photograph (and podcast) at a time. Please RT the first post and show the world our perspectives! Thanks! #DisabilityArts End/ October 25, 2019.

              Warwick Davis two short films produced for @LPUKOnline (October 25, 2018):

              1. . . . about ‘anti-social photography’. . .
              2. . . . about using a child’s natural curiosity to teach them about dwarfism.

              Cara Reedy:

              It’s Dwarfism Awareness Day and in honor of that I am launching my new podcast. Infamously Short Shorts-Tales of The Average Heighted Sideshow. October 25, 2018.

              Samantha Trubyk:

              Happy Dwarfism Awareness Day! I’m wearing my green and excited to start the day! October 25, 2017.

              ARTICLE LINKS:

              Joe Pagonakis. “Parma man with a tall spirit shares his story during Dwarfism Awareness Month.” October 17, 2023. https://www.news5cleveland.com/news/local-news/parma-man-with-a-tall-spirit-shares-his-story-during-dwarfism-awareness-month

              Erin Pritchard. “Why We Need to Put a Different Kind of Spotlight on Dwarfism.” October 2, 2023. The Mighty. https://themighty.com/topic/dwarfism/addressing-stereotypes-dwarfism-awareness-month/

              Angela Muir Van Etten. “Dwarfism Sensitivity & Awareness.” Blog post. October 24, 2022. https://angelamuirvanetten.com/dwarfism-sensitivity–awareness/

              Nick Sorensen. “Dwarfism Awareness Month.” First at 4, Erie News Now. https://www.erienewsnow.com/clip/15426993/dwarfism-awareness-month?utm_campaign=snd-autopilot&utm_medium=social&utm_source=twitter_ErieNewsNow

              Sallee Ann Harrison. “This is America: How my son taught me to embrace dwarfism.” USA TODAY. October 21, 2022. https://www.usatoday.com/story/news/nation/2022/10/21/dwarfism-awareness-month-embracing-dwarfism-with-son/10544447002/

              Angela Muir Van Etten. “Dwarf Tossing Throwback.” Blog post. March 8, 2021. https://angelamuirvanetten.com/dwarf-tossing-throwback/

              Dwarfism Awareness Month with LPA. 2020. https://www.lpaonline.org/assets/documents/Dwarfism%20Awareness%20Presentation.pdf

              Michelle Kraus. “Dwarfism Awareness Month: A Bit of LPA’s History.” [maybe 2020]. https://vimeo.com/297637342/33db98941e

              Stephanie Rodriguez. “Mom shares infant daughter’s story for Dwarfism Awareness Day.” Oct 23, 2020 (Updated Aug 24, 2022). https://www.wqow.com/news/daybreak/mom-shares-infant-daughter-s-story-for-dwarfism-awareness-day/article_eee02390-6ae4-5707-8eff-f012d672cbcb.html

              Jade Hayden. “Sinéad Burke and toy company team up to create little person doll for World Dwarfism Awareness Day.” Life. October 26, 2019. https://her.ie/life/sinead-burke-toy-company-team-create-little-person-doll-world-dwarfism-awareness-day-486784

              Carly Kutner. “Dwarfism Awareness Month: A Recap.” The Joy of Mira blog. October 26, 2017. https://www.thejoyofmira.com/blog/2017/10/26/dwarfism-awareness-month-a-recap

              “Federal Way photographer tells family’s story in Dwarfism Awareness Month photo essay.” October 20, 2015. https://www.federalwaymirror.com/news/federal-way-photographer-tells-familys-story-in-dwarfism-awareness-month-photo-essay/

              To dig deeper, go to Angela Muir Van Etten’s dwarfism book trilogy, https://angelamuirvanetten.com/books/

              Categories
              Awareness

              Dwarfism Memoir Trilogy Punctuated with Triple Threads

              Trilogy Complete

              After 33 years my dwarfism memoir trilogy is finally complete. Three books in a little more than three decades about God’s three gifts of grace in my life—faith, hope, and love. As it happens, the word “three” has emerged as a thread in this cradle to retirement memoir series.

              ALWAYS AN ADVOCATE: Champions of Change for People with Dwarfism and Disabilities (#3) is organized into three parts: Part I considers volunteer leadership challenges; Part II covers dwarf tossing; and Part III deals with equal access. The book is available in three formats: e-book, paperback, and audio.

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              Part I discusses the three times Robert or I served as LPA President during the years membership grew from about 3,000 in 1980 to 6,000 in 2006. Part II addresses LPA’s action to halt the dwarf tossing atrocity in three states—Illinois, Florida, and New York. Part III involves equal access to the built environment, education, emergency operations, housing, social security disability benefits, transportation, and voting. It took three years to break the six-inch reach barrier in the built environment standing against three of the most powerful industries in the nation—banking, oil, and retail.

              PASS ME YOUR SHOES: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith (#2) is available in both print and as an e-book. Our marriage was cemented with three marriage ceremonies in 1981. The wedding and anniversary rings on three fingers of my left hand symbolize our commitment.

              Though if one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken. ~ Ecclesiastes 4:12, New International Version

              Robert and I met when I came from New Zealand to America for three months on a Winston Churchill Fellowship. I obtained an American law degree after attending law school for three semesters. Despite passing the three day Ohio bar exam, I experienced discrimination in three job interviews.

              After a three-hour hip replacement surgery in 1997, Robert tanked up on three pints of blood. When he forgot to bring his electric razor to the hospital, a hand razor was off limits for three weeks because he was on a blood thinner. We couldn’t decide if the resulting beard gave him the distinguished professor or garden gnome look.

              Dwarfs Don’t Live in Doll Houses (#1) is available as an e-book and used print copies. It took three photo shoots on bitterly cold days to get the right cover photo image.

              I’m the eldest of three children and Robert has three younger brothers. Our adult height is the size of a three year old. When I was a bridesmaid for the third time, someone said, “If you’re a bridesmaid three times, you’ll never be married yourself.” Don’t believe everything you hear.

              So what do all these threes mean? Whatever you want to read into it. Maybe not a triple crown, but certainly three opportunities to learn about dwarfism in childhood, marriage, and advocacy. Read and change your life for the better!

              [In recognition of National Book Lovers Day on August 9, 2023, this post updates “DWARFISM TRILOGY COMPLETE: Recurring Pattern of Three Emerges.” Angela Muir Van Etten blog post (September 27, 2021).]

              Resources for digging deeper:

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              Awareness

              Barrier Removal Beats Awareness

              Robert barrier removal

              As one among 60 or so million people with disabilities in the United States, National Barrier Awareness Day is not a day that I need. Everyday I’m fully aware of barriers that impede the integration of people with disabilities in society. Yet the day is definitely needed by the people without disabilities who erect discriminatory barriers that exclude us from accessing education, employment, the built environment, health care, housing, and myriads of other programs and services.

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              When President Ronald Reagan first promulgated the day on May 07, 1986 he recognized that barriers inhibit or prevent so many of our fellow Americans from participating fully in the life of our society. He lamented the effect of barriers blocking the contribution of people with disabilities. However, his proclamation merely called for public understanding and awareness.

              Reagan stopped short of calling for barrier removal. Instead he erroneously called for the public to appreciate the barriers people with disabilities must surmount. Absolutely not! We are not obliged to surmount barriers.

              Today our focus must be on barrier removal. Just as Reagan boldly demanded Mr. Gorbachev to “tear down this wall” at the Brandenburg Gate in 1987, people with disabilities must demand offenders to tear down disability barriers. The time for soft-peddling and awareness programs won’t get the job done.

              This year’s barrier awareness day requires a call for removal of barriers that obstruct major life activities like bending, breathing, caring for one’s self, communicating, concentrating, driving, eating, hearing, lifting, learning, parking, performing manual tasks, reaching, reading, seeing, shopping, sleeping, standing, talking, thinking, walking, wheeling, and working.

              Given my stature of 40 inches, I’m continually confronted by reach barriers. For example in the last two weeks I’ve been unable to reach amenities in a hotel, medical building, dental office, and school. The hotel had several reach barriers:

              • The check in counter was above my head making communication with the customer service representative difficult and signing the signature pad impossible.
              • The bed was too high to climb onto.
              • The thermostat set at 68 degrees Fahrenheit was too cold, but was too high to change.
              • Service counters at the breakfast buffet and chef station were too high. We could not see or serve our own food.

              At the medical center, a new self-check in machine was installed above my husband’s head and at the dentist, the receptionist was hidden behind a wall that was above my head. At the school I was visiting, the door was locked for security purposes and I was unable to reach the doorbell to announce my arrival. I also had to straddle two parking spaces due to there being no van accessible parking.

              Although staff and friends provided an alternative means of accessing services in these scenarios, they all deprived me of independent use of the facility. As you can see, the necessity for barrier removal is frequent and the continuing need to tear down disability barriers can be overwhelming and requires perseverance.

                          What barriers have you persevered in tearing down?

              Read more about breaking down barriers in book three of my dwarfism memoir trilogy, “ALWAYS AN ADVOCATE: Champions of Change for People with Dwarfism and Disabilities,”https://angelamuirvanetten.com/always-an-advocate/.

              Categories
              Awareness

              Debunk Dwarfism Stereotypes

              Clown
              1. Our Height Doesn’t Define Us

              Negative names focus on our height: midget, pint-size, runt, shorty, shrimp, and stumpy. But our essence is not measured in inches or based on appearance. Dwarf pride comes from our abilities, character, personality, preferences, heart, soul, spirit, and size.

              2. We Are Equal

              We are robbed of equality when elevated to a pedestal as heroes or downgraded to victims needing pity and special treatment. Our equality demands acceptance for who we are, inclusion, and accommodations for a level playing field.

              3. We Are Not Children

              Condescending conversation amplified with a pat on the head, soliciting our response from another adult, and ignoring our presence by reaching over our head to jump the line all need to stop. People with dwarfism must challenge child-like treatment with adult confidence, correction, language, topics, tone, and behavior.

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              4. We Are Not All Entertainers (Clowns & Characters)

              Little people don’t appreciate strangers offering us a circus job, mistaking us for a performer in a visiting Muppet Show, or inviting us to a Saint Patrick’s Day parade as a leprechaun. Entertainment is one among many career paths little people choose. We are also well represented in professions, trades, service industry, and the arts. We don’t exist exclusively to entertain and amuse the public.

              5. We Are Not Needy & Helpless

              Little people are not obliged to accept help especially when it’s not needed. Overzealous helpers undermine our independence. We should inform helpers it’s okay to ask if help is needed, but they must accept a “no thanks” reply.

              6. We Don’t Only Marry Other Little People

              Having height in common is insufficient commonality to make for a happy marriage. People with dwarfism enjoy happy marriages with people of short, average, and tall stature.

              7. We Don’t All Know Each Other

              An Englishman once told me, “I know your friend.” He was referring to a little person in the UK, a place I had yet to visit and where I didn’t know any people of short stature. Such irrational claims need to be challenged.

              8. We Don’t All Look Alike

              Many strangers don’t distinguish between us, even when we’re different ages, heights, hair color, and proportions. For example, many little people report being mistaken for reality TV stars, Matt or Amy Roloff from Little People, Big World. It’s important to refute the error, maintain our own identity, and stand our ground when people don’t believe us.

              9. We Are Not Carbon Copies Of One Another

              Dwarfs do not have the same interests or make the same choices. For example:

              • Some lower kitchen counters and others use stools or climb.
              • Some drive with pedal extensions and others use hand controls.
              • Some couples have biological children, some adopt, and others have no children.
              • In conversation with average-size people, some prefer they kneel down or crouch for eye-to-eye communication and others don’t want any concession to height differences.

              10. We Are Not Always Happy

              Little people have just as many ups and downs as other people. We don’t all have a happy gene.

              Image by OpenClipart-Vectors from Pixabay. https://pixabay.com/vectors/clown-crazy-happy-funny-cartoon-1295519/s

              This post was based in part on excerpts from the first book in my dwarfism trilogy, “Dwarfs Don’t Live in Doll Houses.” For more of my writings, go to https://angelamuirvanetten.com where you can subscribe to my weekly blog and find information and buy links to my books.

              Categories
              Awareness

              Dwarfs Don’t Live in Doll Houses: 35-Year Anniversary

              Dwarfs Don't Live

              Written by baby boomer Angela Muir Van Etten, Dwarfs Don’t Live in Doll Houses—published in 1988—has influenced three generations of readers: baby boomers, Gen X, and millennials. The 2021 e-book release makes discovery by Gen Z possible.

              Baby boomer Karen described it as “a great book with pride of place on her bookshelf.” After discovering the book in a secondhand bookstore, Millennial Clinton stated, “We picked up this gem because you learn about identity and your people in history by reading the stories and the books they write.” Jenn responded to his Facebook post saying, “I remember this book from when I was a kid!”

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              Indeed the book is my history of growing up in New Zealand in the 1950s and 60s. When introducing the digital edition, I alerted readers to consider it as a time capsule for how little people and their families experienced life prior to disability civil rights laws. I anticipated that readers would recognize that despite passage of laws like the Americans with Disabilities Act, human behavior has not changed. Consequently, the book remains relevant for disability issues that continue to this day: acceptance, advocacy, attitudinal and environmental barriers, bullying, dating, dwarf tossing, employment discrimination and reasonable accommodations, inclusion in education et al.

              Dwarfs Don’t Live in Doll Houses has led the way in dwarfism memoirs and is probably the first written by a little person. As noted on the back cover it’s “a unique opportunity to see personal, family, school and public life through the eyes of a dwarf from the point of view of a single person.”

              At the time of it’s 1988 publication, the memoir was endorsed by a psychologist with dwarfism, Leonard Sawisch; author and anthropology professor, Joan Ablon;the Chairman of the Little People of America (LPA) Medical Advisory Board, Dr. Charles Scott, Jr., and two parents of adult children with dwarfism, LPA National Parent Coordinator, Helen Ference and Elizabeth Elder. Sawisch noted the keen insight into the dwarf experience. Scott applauded the wealth of experience and wisdom made animatedly realistic, personal, revealing and at times humorous. Ablon characterized it as a rare window into the life experiences of a dwarf child, teenager, and young adult. Elder heightened her awareness and confessed to not realistically seeing life as a little person experiences it.

              Throughout the years, readers have commented favorably. One mother of a short-statured child told me, “I keep your book by my bedside and refer to it frequently.” Readers with dwarfism report finding wisdom and help. Average height work colleagues appreciated having misconceptions dispelled and being informed of everyday obstacles a little person overcomes. In January 2022, Rebecca wrote on my Goodreads page: “Very thought provoking read. Angela does a good job of bringing the reader into her life. Definitely recommend reading this book to help remind yourself not to “judge a book by it’s cover.”

              So how about you? If you’re ready to grab one of the 4,000 print books originally sold, get a used copy at Amazon.com while supplies last.

              For more about my dwarfism memoir trilogy read:

              A voice for people with dwarfism & disability guided by faith and justice. https://angelamuirvanetten.com

              Categories
              Awareness

              Popular Children’s Books on Dwarfism

              Girls reading

              “We all need to read books where the heroes are relatable to our own selves. It’s even more important for kids. It helps develop hope, solutions, connection and a strong sense of identity, belonging.”

              Meriah Nichols, deaf mom to three children with disabilities

              In honor of International Children’s Book Day on April 2nd, I compiled a list of children’s books on dwarfism in order of their popularity on Amazon. A complete booklist is available in the resources section of my website at https://angelamuirvanetten.com/resources/#childrenbooks. Please contact me if you know of books missing from the list.

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              Stand Tall, Molly Lou Melon 
              by Patty Lovell (Author), David Catrow (Illustrator)
              August 27, 2001

              Molly Lou Melon is short and clumsy. When bullied on her first day in a new school she remembers her grandmother’s advice.
              Reading age: 3 – 6 years

              Break the Mould: How to Take Your Place in the World
              by Sinéad Burke
              October 15, 2020

              Drawing on her own experiences as a little person, Burke encourages readers to believe in themselves, have pride in who they are, and make the world a more inclusive place.
              Reading age: ‎ 9 – 13 years

              Being Small (Isn’t So Bad After All) 
              by Lori Orlinsky 
              February 11, 2022 

              A picture book about the shortest kid in the class who is scared to go to school. Her mother instills self-confidence in her by pointing out the advantages of being short.
              Reading age: ‎ 2 – 6 years

              Short 
              by Holly Goldberg Sloan
              January 9, 2018

              Julia is very short for her age, but she discovers her own sense of self when playing a munchkin in “The Wizard of Oz” after befriending Olive, an adult with dwarfism in the production.
              Reading age: ‎ 8 – 12 years

              The Thing About Georgie 
              by Lisa Graff  
              August 26, 2008

              A warm and humorous novel starring an unforgettable young boy with dwarfism.
              Reading age:‎ 7 – 10 years

              Little Imperfections: A Tall Tale of Growing Up Different
              by Peet Montzingo & Rockwell Sands 
              November 1, 2022 

              In this picture book, Montzingo is the only “tall” sibling in a family of little people. He addresses being different, feeling like you don’t fit in, and finding yourself.
              Reading age: ‎ 4 years and up

              Short Or Tall Doesn’t Matter At All
              by Asaf Rozanes
              February 3, 2018

              This illustrated story delivers the anti-bullying message about a little girl who is picked on in school because she is short and helps young kids understand they are not alone.
              Reading age: 3 – 8 years

              Mummy There’s a New Girl 
              by Danielle Webb
              June 24, 2021

              When a new girl joins the class, children pick on her for her looks, but one little boy looks past her differences and learns that really – size is no big deal!
              Reading age: ‎ Baby – 7 years

              Louie’s Together Playground 
              by Dr. Nicole Julia (Author), Jeff Crowther (Illustrator)
              January 23, 2023

              Louie is a llama with dwarfism who, together with his friends, dreams up a plan to bring the very first all-inclusive playground to their town.
              Reading age: 2 – 7 years

              Image credit: https://pixabay.com/photos/girls-books-reading-read-library-5711423/