Category: Guest

Categories
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).

Want to subscribe to receive blog updates sign up today!

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
Guest Independence

To Boldly Go With a White Cane

white cane pic
Jody W. Ianuzzi, a mentor and advocate for blind people conveying a can do attitude towards vision loss.


Through the ages blind people have used a staff, walking stick, or cane to explore their environment. This all changed in 1921 when James Big from Bristol, England painted his walking stick white to make it more visible. The concept caught on when Rotary clubs and the BBC encouraged all blind people to use white canes for identification. The concept spread to France and, in the 1930s, to the United States where Lions clubs promoted the white cane to identify blind people. By the late 1930s, state laws were enacted to protect blind pedestrians.

Want to subscribe to receive blog updates sign up today!

The next major advancement in cane mobility came after World War II when Richard Hoover used a long white cane to explore the environment along with a new method of moving the cane from side to side one step ahead of the traveler. This was the beginning of the Orientation and Mobility Specialist profession. Today O and M specialists teach young children to senior citizens how to use the long white cane and nonvisual environmental clues to negotiate around all kinds of obstacles. These techniques include listening for traffic and safely crossing the street.

In the past, blind people rarely traveled alone but now with the advanced O and M techniques blind people are able to travel independently with safety and dignity. The techniques have evolved but so have the canes. Historically the walking stick was made of wood. Now modern canes are made of carbon fiber and they are available with many different types of tips depending on the travelers preference. 

Blind adults who learned to use the white cane as a young child never knew a time in their life when they didn’t have the advantage of traveling with a long white cane. Other adults sometimes have an adjustment and resist using the white cane until they discover the freedom and independence it provides.

I was taught to use the white cane at age 16 when all of my friends were getting their drivers licenses. This was very difficult for me because I did not want to appear different from my friends. I also resisted using the white cane until I met other capable blind adults who could travel more freely than I could because they had great cane skills. I realized that I would rather travel as a competent blind person than try to fake being sighted and risk a serious injury. I no longer walked with my head down. Rather I held my head up high and walked proudly and quickly for the first time in my life!

In 1964, Congress recognized the importance of the long white cane in providing freedom and independence to blind people and passed resolution HR 753 declaring October 15 to be White Cane Safety Day across the United States. Every president since Lyndon Johnson has observed this date as White Cane Safety Day for all blind Americans. 

Now, a century after James Big painted the first white cane, blind people around the world can all go boldly with their long white canes!

Reference: https://www.njcounciloftheblind.org/brochures/history_of_white_cane.htm

For a subscription to my weekly blog on dwarfism and disability issues, go to https://angelamuirvanetten.com/blog/.

Categories
Guest Medical

It’s OK to Not be OK

I'm not Okay
Image by S K from Pixabay

Guest post by Rev. Dr. Michael Woolf
Senior Minister, Lake Street Church of Evanston, Illinois

Over a decade ago, when I spent a summer teaching English in China, we took care to explain to students that when someone asks the question, “how are you?” the expected response was “good” or “OK,” regardless of whether those things were true. The truth—that someone is not really asking how you are—is both obvious and unstated to native English speakers, but left me with a profound awareness of how little space there is to respond “actually, I’m not OK.” As we mark Mental Health Awareness Month this May, churches have to make spaces where saying that phrase is accepted.

Want to subscribe to receive blog updates sign up today!

By all accounts the pandemic has had a profoundly negative impact on the nation’s mental health, and in the first year of the pandemic instances of anxiety or depression increased by 25% globally. What you might find surprising is that over 50 million adults, or nearly one in five Americans, struggle with their mental health. The situation is growing more dire for children especially, as we come to grips with the ways that COVID-19 has affected our society.

National Mental Health Awareness Month is an opportunity for communities of faith to take stock of how mental health is talked about within the community. Do clergy preach about mental health and affirm psychological and psychiatric care? Are congregants referred to mental health resources? Are there places where people can relate to other members of the faith community in a vulnerable way, process their emotions, and build community? The ways that a congregation answers these questions might give some insight into how far we need to go to create spaces that are affirming and safe for those struggling with their mental health.

That safe space is not just for laypeople. While studies are yet to give a definitive picture of the mental health landscape for clergy, anecdotally the situation is bleak. Many have left churches due to stress and burnout, and nearly all clergy have had to take on substantial responsibilities that they were not trained for in order to shepherd their congregation through the pandemic. The result is that, in 2021, 38% of clergy have thought about quitting full-time ministry. Congregations must also consider the ways that their policies and level of mental health acceptance can impact whether clergy feel affirmed in seeking psychological care and psychiatric treatment, or whether they feel that such actions are indicative of weakness or being unfit for leadership.

Houses of worship are important actors in community ecosystems. Most of the time, we might think of how our communities are tied to a food bank, homeless shelter, art studios, or nonprofit offices. But churches can also be a vital force for their community’s mental health by gathering community, lifting up others in prayer, and creating safe spaces where access to community support is not predicated on falsely claiming that everything is fine. This month and always, we have to dedicate ourselves to being real, vulnerable, and honest; that has always represented the church at its best, but now, as we assess the damage of COVID-19 on our mental health, it’s more important than ever.

Used by permission of The Christian Citizen, https://christiancitizen.us/, a publication of American Baptist Home Mission Societies.

Read more from a voice for people with dwarfism & disability, guided by faith and justice, at https://angelamuirvanetten.com.

Categories
Guest

Shining a Light on Crime Victims with Disabilities

Photo Credit: Claudia Wolff

During the month of April, Sexual Assault Awareness Month, Child Abuse Prevention Month, and National Crime Victims’ Rights Week is recognized. As a nonprofit that provides services to people with disabilities, including victims of crime, Coalition for Independent Living Options (CILO) appreciates the attention April brings to these important issues.

People with disabilities are exceptionally vulnerable to being sexually assaulted or abused as children. According to the Vera Institute of Justice, people with disabilities are three times more likely to be sexually abused as children. The disability types with a heightened risk include intellectual, communication, and behavior-related disabilities.

Want to subscribe to receive blog updates sign up today!

Those who rely on a caregiver are at risk of sexual assault and abuse at the hands of those they trust. Abusive caregivers may downplay the abuse, attempting to justify their actions as “necessary” or as a normal part of the caretaking process. Often the abuse goes unreported as the victim fears retaliation, may not want to get the caregiver in trouble, or may fear losing their independence if the caregiver is removed.

Unfortunately, society as a whole does not typically recognize those with disabilities, especially youth with disabilities, as sexual beings. This results in youth with disabilities being left out of important conversations surrounding consent, sexual education, and healthy relationships. Without a strong foundational understanding of their rights over their own body, youth with disabilities may be targeted by others who assume they are less likely to be viewed as credible.

Male-identified individuals are also at risk for sexual assault and child abuse. According to one study, the prevalence of lifetime sexual violence was 13.9% among men with a disability, as compared to 3.7% of men without a disability.

Awareness surrounding the issues of child abuse and sexual assault of people with disabilities is critical. Often people with disabilities don’t recognize that they are experiencing abuse. In many cases, community members and service providers identify and report the suspected abuse. Increased education to law enforcement about crime victims with disabilities is vital. There is a misconception among first responders that people with disabilities, especially those with cognitive or intellectual/developmental disabilities, lack full understanding of what took place, or do not have accurate recall of events. Law enforcement may not investigate or push cases forward for prosecution for these reasons. Likewise prosecutors may consider the person lacking credibility and choose not to file charges.

Equally important to awareness is ensuring access to much needed services and resources. Those enduring abuse may be unaware of resources available in the community, or may encounter barriers in accessing those resources. For example, those with communication disabilities may not be able to clearly explain their experience or may use assistive technology that listeners unfamiliar with the device have difficulty understanding.

This April, take time to learn more about the impacts of crime on those with disabilities.

If you, or someone you know, is a crime victim in need of services, contact your local law enforcement agency and ask for a referral to a victim advocate that works exclusively with people with disabilities.

Statistics in this post are drawn from the Vera Institute of Justice, https://www.vera.org/publications/sexual-abuse-of-children-with-disabilities-a-national-snapshot and the Building Partnerships Initiative for the Protection of Persons with Disabilities, https://mabuildingpartnershipsinitiative.com/resources/prevalance-of-violence/.

This post first appeared on Angela Muir Van Etten’s blog on April 4, 2022 at https://angelamuirvanetten.com/. Sharing is encouraged.

Categories
Guest Little People of America

Little People of America and Adoption

Colleen Gioffreda
Colleen Gioffreda
LPA National Adoption Coordinator

Happy National Adoption Day!

Little People of America (LPA) provides information and support in a variety of ways. The one that’s closest to me personally is the adoption program, which helped my family find our daughter 19 years ago. (She’s awesome, by the way.)

The LPA Adoption program, or some variation of it, has been around since about 1961. Since that time, there have been hundreds of children with dwarfism who have found their families through adoption and LPA. 

Want to subscribe to receive blog updates sign up today!

Some parents with dwarfism adopt because they worry about the health implications of having dwarfism and being pregnant. Others look at this possibility because adoption has been such a significant part of LPA’s culture and they are called to become adoptive parents. Typically average height parents adopt within LPA because they already have a child with dwarfism, and they would like them to grow up with a short-statured sibling (or two). However the family decides on adoption, most of the time the decision is solidified when they see the picture of their child for the first time and fall in love. I’ve had the honor of watching that moment several times in my role as adoption coordinator, and every single time it happens, it’s simply magical. 

LPA’s role in adoption is more of a facilitator, rather than what a coordinator at an agency does. We don’t provide services like home studies or dossiers, but rather we find children who need families from all over the world, and let LPA members know what the next steps would be in adopting a particular child. 

One of the most important topics that LPA helps with regarding adopting a child with a dwarfism or a disability internationally is knowing and emphasizing the correct wording to ensure that the prospective parents’ application is not rejected due to their disability. In China, for example, there are several rules about international adoption–but the one most relevant to our community is that a parent with a disability will not be allowed to adopt a child, unless the parent and child have the same disability. This means that a person with dwarfism will theoretically not be able to adopt a child who has a limb difference or visual impairment.  This rule is important to keep in mind when even the disability of the parent and child match, because the paperwork must match as well.  

Adoption is magical and lovely and amazing and fantastic, and I feel lucky every day that I have not only made my family complete through adoption, but that I have had the opportunity to watch the magic happen hundreds of times. I am so thankful to have had a front row seat to such love.

For those of you who really think numbers are cool, here are some statistics from the last 15 years:

  • LPA has advocated for over 400 children. 
  • Approximately 350 children have found their forever families. 
  • About 10% of adoptions through LPA are domestic (USA) adoptions, and 90% are international.
  • LPA has advocated for the adoption of children in more than 20 countries.
  • Children from China represent about 60% of the international adoptions with Bulgaria coming in a distant second, at 15%. 

Anyone interested in discussing an LP adoption with Colleen can email her at adoption.lpa@gmail.com.

Categories
Disability Rights Guest

Will Congress Disenfranchise Voters with Disabilities?

Congress

Twenty-six national disability rights organizations, including Little People of America, are deeply concerned over the paper ballot mandate included in the For the People Act of 2021 (H.R. 1/S. 1). The bill addresses many barriers to voting in America, but mandates the use of paper ballots in both in-person and remote voting, which undermines the goals of the bill by restricting access for many voters with disabilities.

Any mandate of a paper-based voting system will inevitably harm voters with print disabilities as it would:

Want to subscribe to receive blog updates sign up today!

(1) end all voting system innovation and advancement to produce a fully accessible voting system that provides enhanced security;

(2) limit voters with disabilities’ federal right to privately and independently verify and cast their ballots, and;

(3) prohibit digital voting which allows voters to read, mark, verify, and return their ballot completely electronically.

Although paper-based ballot voting options have become the preferred voting system to people who believe mandating the use of paper ballots is necessary to ensure the security of elections, it must be made abundantly clear that the ability to privately and independently hand mark, verify, and cast a paper ballot is impossible for many voters with print disabilities.

On March 11, 2021, the United States House of Representatives passed the For the People Act, and the legislation is now being considered in the U.S. Senate. In late March, the Senate held its first hearing on the bill and prior to the Senate’s May markup, national disability organizations once again outlined their concerns and offered necessary improvements and changes to the bill’s paper ballot mandate. Unfortunately, the fears of disability advocates on how the paper mandate will impact voters with print disabilities have not been addressed and only minimal changes have been made to the mandate to protect the rights of voters with disabilities.

The National Disability Rights Network urges Congress to make changes to the For the People Act to exclude voters with disabilities, covered by the Americans with Disabilities Act, from having to use a voter-verified paper ballot for both in-person and remote voting. Until fully accessible paper-ballot voting systems are available and ready for widespread use, accessible in-person and vote-by-mail voting options must be offered to ensure all voters in America can receive, mark, verify, and cast a private and independent ballot. The For the People Act cannot eliminate the only accessible voting options for many voters with disabilities, such as Direct Recording Electronic (DRE) voting machines and electronic absentee or vote-by-mail systems.

Although For the People Act includes some provisions to improve voter access for voters with disabilities, such as ensuring that drop boxes are fully accessible, these advances don’t mitigate the unintended consequence of the paper ballot mandate. Simply put, the current paper ballot mandate will exclude many voters from the ballot box, counteracting the purpose of this well-intended and important legislation.

Before paper-based voting systems become the law of the land, the concerns of voters with disabilities must be addressed.

Share this concern with your Senator today.

This post is a condensed version of “Disability Advocates Warn the For the People Act’s PaperBallot Mandate Will Disenfranchise Voters with Disabilities.” National Disability Rights Network. June 15, 2021. https://www.ndrn.org/resource/disability-advocates-warn-the-for-the-people-acts-paper-ballot-mandate-will-disenfranchise-voters-with-disabilities/?eType=EmailBlastContent&eId=1fbfcf73-7460-4276-a9cc-2e18b815bfe5.

Categories
Guest Inclusion

Celebrate People Blessed With Down Syndrome

Faith & mother

World Down Syndrome Day is 3-21-21. Down syndrome (Ds), named for Dr. Langdon Down, is the diagnosis for those blessed with a triplicate of the 21st chromosome. We celebrate this amazing group of people every March 21st because God doesn’t make mistakes; the triplicate didn’t slip his attention. In fact some people with Down syndrome will tell those of us with a typical duplicate #21 that we are the ones missing something.

That missing bit of genetic material may be why the world is such a cruel and serious place. People with Ds are vanishing at an alarming rate.

Want to subscribe to receive blog updates sign up today!

Just as life expectancy for people with Ds has expanded to 60-70 years old, babies are being terminated just because they have Ds. Iceland has virtually eliminated births of babies with Ds through abortion. Norway is close behind.

Personally, I was not expecting to have a child with Ds. I wasn’t expecting a baby at all at 42 years old. But 23 years ago, Faith burst into our family and nothing has been the same since. She survived a C-section five weeks premature, weighing just three pounds, and was born with a serious heart defect. We were quickly thrust into the medical world: Faith had closed heart surgery at four months and open heart surgery at eight months, all before hitting the ten pound mark.

When things looked up medically (our fighter would survive!), I learned about physical therapy, speech therapy, feeding therapy, occupational therapy, early intervention, and play therapy. As school age approached, I educated myself on inclusion and decided Faith should be included in a general classroom instead of being segregated in a special classroom. When no Christian schools in our area would accept Faith in kindergarten, which hurt deeply, she enrolled in the public school. What a mission she had there! She touched so many lives of students, teachers, and administrators, and continues to be somewhat of a local celebrity because of all the people she impacted. I’m proud to announce that Faith was the first student with Down syndrome to graduate with a standard diploma in our county!

All of this has been a huge trial to my faith. A lifelong Christian, I was hurt and felt God was punishing me when I thought I had been doing His will. It took some time to get over the hurt, anger, and loss of trust. When the church school our older children attended refused to admit Faith, we left after over 20 years there. But we didn’t leave our faith, and found a church preschool willing to try.

As a young woman, Faith has a boyfriend, she loves her dance classes and voice lessons and has performed in many recitals and plays. With the support of her big sister and brother-in-law, Faith got involved in our original church where she joined the praise team, altar guild, and Bible study (we ended up following her back there). The isolation of the past year has been difficult for this social young woman, but she will bounce back because she’s a fighter.

This post first appeared on Angela Muir Van Etten’s blog on March 22, 2021 at https://angelamuirvanetten.com/. Readers are encouraged to share the post, but are asked to include the website link.