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.

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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
Disability Rights

Ten Steps To Effective Advocacy

Target
Image by Darwin Laganzon from Pixabay

1. Care Enough To Do Something

Our sense of injustice needs to be aroused to the boiling point where we say: “Something has to be done about this!” For example, Little People are tired of being unable to reach ATMs, gas pump dispensers, point-of-sale terminals, light switches, door handles, elevator buttons, and the like.

2. Commitment Is Personal

Yes, somebody should do something about this. But we can’t expect others to do something if we won’t do anything. No one cares or understands as much as we do.

Nothing will change until “the somebody” becomes “the someone” who cares enough to do something!

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3. Choose the Right Forum

When advocating against dwarf tossing as entertainment in licensed establishments, Little People of America (LPA) successfully lobbied two State legislatures to impose a ban. Local governments couldn’t stop it because the road show had left town before a meeting could be held. Congress was inappropriate because the atrocity was not a nationwide problem.

4. Competence

The ICC/ANSI A117.1 Committee on Accessible and Usable Buildings and Facilities was the best forum to make building code changes, but LPA’s success depended on competent use of the amendment process, Robert’s of Order, building code language, legislative format, the art of persuasion, and so much more.

5. Can’t Change the World Overnight

Change is incremental in building codes. The long-term goal of accessibility in public places can be set, but it must be broken down into manageable pieces. For example, from 1994 to 1998, LPA’s first bite into access barriers was to lower the unobstructed reach range from 54 to 48 inches. From 1998 to 2003, the second bite was to remove the obstructed reach in bathrooms.

6. Calculate the Cost

Advocacy can be time consuming and expensive. Be sure to carve out enough time and to allocate sufficient financial and human resources.

7. Connections and Coalitions

Build relationships to ensure communications with people on both sides of an issue. It is important to know the objections so we are prepared in advance with an answer.

Form a network with those who share the same goal. In the case of Little People, look for constituents (LPA individuals and groups), allies (other disability groups), and supporters (family, friends, and colleagues).

Don’t compete with other disability groups. For example, the interests of little people and wheelchair users differ in bathrooms. Work together for universal design and don’t pull in different directions.

8. Compromise & Creativity

LPA’s short-term agreement with elevator manufacturers allowed for a reach exception in high-rise elevators in 1998, and gave time to develop a technology solution for the 2003 revision cycle.

9. Communication keys:

  • Credibility.
  • Consistency.
  • Be concise in stating the problem and how it can be solved.
  • Counter opposing opinions.
  • Be clear and convincing to those whose minds need to be changed.
  • Don’t crumble under the pressure.

10. Churchill

Remember the advice of Winston Churchill: “Never give in; never, never, never, never.” And my personal practice? Perseverance, preparation and prayer!

These principles are drawn from lessons learned when advocating against dwarf tossing and for barrier removal in the built environment. To see these principles in action, read “ALWAYS AN ADVOCATE: Champions of Change for People with Dwarfism and Disabilities.” Buy your print, e-book, or audiobook today at https://www.amazon.com/dp/1737333600/.

Categories
Awareness

What Comes First: Person or Identity?

Compare

I was a crippled child, a handicapped teenager, and now a disabled adult. So what accounts for these changes in my condition? Apart from aging through six decades and shrinking two inches, my condition hasn’t changed. I’m still a dwarf of 40 inches with multiple, congenital, joint dislocations and fusions. The change is in the words chosen to describe the disability class of people to which I belong.

When I blogged about offensive words on November 2, 2020, I remarked, “It’s not enough to keep up with fashion trends, we must also stay current with our language.” But when advising readers to use person-first language, I passed over a seismic shift in disability terminology. Many people with disabilities now use identity-first language.

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So what’s the difference?

I was introduced to person-first language in 1981 when I came to the United States from New Zealand on a Winston Churchill Fellowship. My purpose was to study disability civil rights laws and public education programs to improve the public’s attitude towards people with disabilities. That’s when I learned to use language that recognizes the person before the disability on the premise that our disabilities don’t define us. For example, instead of saying the blind man or the deaf girl say, the man who is blind or the girl who is deaf.

However, I was recently pulled up short by a tweet of Emily Ladau, author of Demystifying Disability, saying: “Calling myself a disabled person is not a denial of my personhood; it’s a celebration of part of me.” People with various disabilities have expressed a similar sentiment.

  • “I Am Not a Person With Epilepsy. I Am an Epileptic.” This doesn’t imply that epilepsy defines the person, but rather it acknowledges epilepsy as part of the individual that fundamentally shapes their identity.
  • Many people proudly call themselves autistic and reject being called “people with autism.” They see autism as integral to their identity.
  • As one mother wrote supporting her daughter’s choice of identity-first language, “It’s not inherently bad to say a Down’s woman. Using person-first language is like saying, “don’t look at what’s wrong first (Downs), look at what’s right (the person).”

So where does that leave the public intent on being sensitive? Has person-first language been supplanted by identity-first language? Not necessarily. More like, it depends. Disabled people like any class of people are not all cut with the same cloth. In the case of dwarfism for example, the terms dwarf, little person, or short-statured are all in play. It’s not a case of right or wrong. Rather it depends on the person which term they prefer. Likewise, person-first or identity-first language is a personal preference which each of us are free to decide for ourselves.

So how do people figure out an individual’s preference? No need to walk on eggshells. Just ask them. But if you’re talking to, or writing about, a group of people read their literature for any preference indicators. If none are available, consider explaining your word choice.

For discussion of diverse disability issues, link to my weekly blog and dwarfism memoir trilogy at https://angelamuirvanetten.com.

Categories
Relationships

Mother’s Day Song of Praise

Mum & Me
Angela and her mother stand smiling in front of a yellow flower garden; both have short brown hair. Angela’s batik dress is ankle length with long sleeves; her mother’s floral dress is knee length with short sleeves. Her mother holds a Bible in her left hand and a jacket in her right hand. Angela’s head is at the height of her mother’s waist.

I remember with a grateful heart Barbara Mary Muir, my loving mother, whose influence in my life will never be forgotten and can never be replaced.

Praise the Lord who chose Barbara Mary as my mother.

Although my life started with grim predictions of an early demise followed by two years of institutional care, I’m thankful mom didn’t reciprocate my rejection of her when she visited. When it was time for my discharge, I rejoice that she brought me home and did not relinquish me to foster care.

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If my mother had not expected the same from me as my average-size siblings—obedience, chores, and good grades—I would have grown up dependent, weak, and frustrated. In treating me according to age not size, she disciplined me when necessary and stood up to strangers who censured her for doing so in public. She offset the actions of relatives who favored me, especially elderly aunts who gave me more money than my brother and sister. On our drive home, mom insisted that I share it with them.

I’m thrilled my mother instilled a love of books and reading and always attended parent-teacher conferences to ensure satisfactory progress. She stressed the importance of education and supported me all the way to graduation from law school. My spiritual education was attended in Sunday School, church, and Bible reading.

Appreciation is due for mom’s instruction on how to live in a world which taunts those with differences. How empowering it is to understand words ignored cannot harm and smiles are stronger than scowls.

I’m glad my mother managed medical needs without (1) parading me before endless doctors; (2) overexposing me to radiation with countless x-rays for research purposes; or (3) trying useless remedies like calcium tablets, stretching, or hormones.

I’m delighted mom taught me how to be independent. She allowed me to go to kids camps and, at 15, to take a train for 300 miles to visit a girlfriend for a week.

In her quest for me to have fun like the other kids, she tried to get me a fast ride on a handheld surf board. Instead, I was dumped onto the sand when three waves piled on top of each other. My board went flying, my bathing cap was swished off, and I rode in on the bottom of the ocean floor with my feet facing their soles to the sun. Mom expected a torrent of fury when I surfaced. All we could do was laugh.

My joy is in knowing my mother’s generosity; hospitality; service to people in need; love of flower gardens, travel, theater, music, and vacations has spilled over into how I live my life. My regret is that mom took her last breath the day after Mother’s Day at age 45. Although I was not ready to say goodbye at age 26, I do not grieve like those who have no hope. I share my mother’s faith that we will meet again on the Day of the LORD. (1 Corinthians 15:51-57; 1 Thessalonians 4:13-17.)

This post is based on Chapters 1 and 2—’Understood’ and ‘Educated’—in Dwarfs Don’t Live in Doll Houses. Email angela@angelamuirvanetten.com to qualify for a new and free autographed print of this book when purchased with Pass Me Your Shoes or Always an Advocate for only $10 a piece. Click on https://angelamuirvanetten.com for details on this dwarfism memoir trilogy and subscription to my weekly blog.

Categories
Disability pride

The Gift of Being Distinctive

Different colored shoes

“Short stature will give you extra opportunities. It will lift you out of the crowd. You will be noticed.” ~ David Hornstein, attorney at four-feet-seven-inches.

My first meeting with a client shattered all the stereotypes people have of how lawyers should look. In a crowded court foyer people watched me weave around people’s legs and whispered among themselves, “Is she really a lawyer?” In the office, I introduced myself and invited potential clients to come in and take a seat. Often they hesitated not sure whether to follow or wait for the “real” lawyer to come in. Parents’ faces brightened with embarrassment, when their curious child crawled under my desk and exclaimed in the midst of the interview, “Mummy her feet don’t touch the floor.”

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But my ability to break free from the lawyer stereotype was helpful. My distinctive appearance made it easy for clients to identify and find me. People came into our office and before agreeing to make an appointment would ask the secretary, “Is this the office of ‘the little lady lawyer’?” Sometimes they gestured with their hand at waist level to make absolutely sure they were in the right place.

During a job search season, one attorney told me that lawyers work hard to stand out from their colleagues. In addition to a good professional reputation, a distinctive feature like a bow tie, cowboy hat, or eye glass frames serves this goal. At 40 inches in height, I don’t need such accessories. My distinctive attributes are naturally built in. People remember me!

Therefore, a special day to put my uniqueness on display is not warranted. My dissimilarity is evident every day of the year. So for those of us with visible disabilities, “National Two Different Colored Shoes Day” on May 3rd appears redundant. Then again, maybe not. Putting a different colored shoe on each foot demonstrates acceptance of differences in ourselves and others, promotes diversity in our world, and encourages us to embrace our uniqueness.

I have come to see my size is a gift that should not be wasted. I can use it to positively influence how people perceive disability, illustrate our abilities, interact with kindness, increase integration into the mainstream, and identify barriers that demand removal. I can impede the impact of negative behaviors by being impervious to the impertinence, isolating offenders, and indicting those who interfere with civil rights and impose both inequality and injustice on people with disabilities.

For You shaped me, inside and out.
You knitted me together in my mother’s womb long before I took my first breath.
I will offer You my grateful heart,
for I am Your unique creation, filled with wonder and awe.
You have approached even the smallest details with excellence;
Your works are wonderful;
I carry this knowledge deep within my soul.
Psalm 139:13-14 (the Voice)

So are you grateful for your uniqueness? Do you see it as a gift from God to be used and not wasted? Are you ready to accept and embrace it?

This post is partially excerpted from Chapters 3 and 9—’At the Bar’ and ‘Attention Gives Opportunity’—in Dwarfs Don’t Live in Doll Houses, https://angelamuirvanetten.com/dwarfs-dont-live-in-doll-houses/. Email angela@angelamuirvanetten.com to qualify for a new and free autographed print of this book when purchased with Pass Me Your Shoes or Always an Advocate.

Categories
Awareness Inclusion

Dancing Differently

Dancer Faith

Question:
What does amputation, burn injuries, deafness, autoimmune disorder, dyslexia, ADHD, multiple sclerosis, dwarfism, and blindness have to do with one another?
a) disability
b) dancing
c) different ability
d) all of the above

Answer:
d) as demonstrated by 11 celebrities with disabilities paired with professionals in Dancing with the Stars from Season 4 to Season 27.

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In season 4, Heather Mills competed to show you can do anything with an artificial leg. Amy Purdy dancing with two below the knee prosthetics was runner-up in season 18. Third place in season 20 went to Noah Galloway who danced with both a prosthetic arm and leg. Judge Carrie Ann Inaba said Noah broadened her scope of what dance looks like.

In Season 6, Marlee Matlin shattered the notion that hearing the music is integral to dancing. Instead she relied on her partner to express the music to her in his body. In Season 22, Nyle DiMarco described “seeing” the music that his ears couldn’t hear. Along with memorizing the timing of his partner’s moves and scratch and squeeze signals, they danced their way to winning the coveted Mirror Ball trophy.

The season 13 winner, J.R. Martinez, has severe burns on more than 34 percent of his body. He competed to give burn survivors hope, pride in their scars, and belief in themselves while facing their fears and limitations.

Jack Osbourne, a Season 17 celebrity with multiple sclerosis, danced to raise awareness and more research. He encouraged those with MS to set and accomplish achievable goals every day. Osbourne finished third.

Attention-deficit/hyperactivity disorder (ADHD) featured as a disability for celebrity and professional dancers alike. Both Jack Osbourne and Nev Schulman—Season 29 runner up—have ADHD. Professionals Daniella Karagach, Karina Smirnoff, and Derek Hough also use dance as a place to channel their excess energy and improve focus.

In Seasons 23 and 25, Terra Jole and Victoria Arlen both reached the semifinals. Terra, who has dwarfism, announced that being different is a great thing. And Victoria, an autoimmune disorder survivor, aspires to replace the term “disability” with “different ability.”

In season 27, Danelle Umstead relied on her partner for guidance. Because she is blind, touching his shoulders or legs allowed her to feel the movement and paint herself a picture.

Just as Dancing with the Stars showcases the beauty of dance, the celebrities with disabilities demonstrated the diversity of dancers. No matter the disability, dance has a place for everyone. Wheelchair users. Cane and crutch users. People with Down Syndrome. You name it.

And as Joe Powell-Main, UK para-dance champion who performs in his wheelchair said, “Sometimes it doesn’t look like conventional ballet—people in point shoes, legs up by their ears—but there needs to be a willingness to look beyond that and see that it’s different.”

On this 40th anniversary of International Dance Day (April 29), let’s dance to improve our mood, creativity, mental and physical health, self-confidence, ability to follow instructions, and perseverance. Let’s all dance in our own different style.

For discussion of diverse disability issues, link to my weekly blog and book trilogy on my website at https://angelamuirvanetten.com.

Categories
Celebrations Little People of America

Celebrate Authors with Dwarfism on World Book Day

World book day

Reduce stress. Improve memory and brain function. Increase attention span. Discover a link between the past and the future, a bridge between generations, and across cultures. Contribute to social transformation. You can do it all by reading books.

For 25 years, the value of reading books has been celebrated on April 23, the anniversary of the deaths of authors William Shakespeare of England, Miguel de Cervantes of Spain, and Inca Garcilaso de la Vega of Peru. The United Nations Educational, Scientific and Cultural Organization inaugurated World Book Day to promote the enjoyment of books and reading.

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In the words of some writers:

“There are worse crimes than burning books. One of them is not reading them.” ~ Joseph Brodsky

“Reading is an exercise in empathy; an exercise in walking in someone else’s shoes for a while.” ~ Malorie Blackman

“Books can be dangerous. The best ones should be labeled ‘This could change your life’.” ~ Helen Exley

“Reading is to the mind what exercise is to the body.” ~ Joseph Addison

“Books help us understand who we are and how we are to behave. They show us what community and friendship mean; they show us how to live and die.” ~ Anne Lamott

So are you ready to reduce stress, prevent crime, increase empathy, flirt with danger, exercise your mind, and learn how to live? If yes, I recommend you start by reading recent books authored by people with dwarfism:

“ALWAYS AN ADVOCATE: Champions of Change for People with Dwarfism and Disabilities,” Angela Muir Van Etten, 2021.

“Dwarfs Don’t Live in Doll Houses,” Angela Muir Van Etten, Kindle 2021.

“PASS ME YOUR SHOES: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith,” Angela Muir Van Etten, 2020.

“Dwarfism, Spatiality and Disabling Experiences” (Interdisciplinary Disability Studies), Erin Pritchard, 2020.

“Looking Up: How a Different Perspective Turns Obstacles into Advantages,” Michele L. Sullivan, 2020.

“A Little Me,” Amy Roloff, 2019.

“LITTLE LEGS, BIG HEART: One Girl’s Journey of Acceptance, Perseverance, and Growth,” Kristen DeAndrade, 2019.

“TEN FEET TALL: Step Into Your Truth and Change Your Freaking World,” Brandon Farbstein, 2018.

“Fierce at Four Foot Two,” Terra Jolé, 2017.

“THINK BIG: Overcoming Obstacles with Optimism,” Jennifer Arnold MD and Bill Klein, 2017.

“LIFE IS SHORT (No Pun Intended): Love, Laughter, and Learning to Enjoy Every Moment,” Jennifer Arnold MD and Bill Klein, 2016.

All books are available on Amazon.com and at various other book retailers.

In the tradition of World Book Day, get your free paperback and autographed copy of the out-of-print Dwarfs Don’t Live in Doll Houses from the recently discovered box of books in my sister’s basement in Sydney, Australia. Qualify for the free book and free shipping by completing your dwarfism trilogy paperback set with a 33% discount on Pass Me Your Shoes and/or Always an Advocate at $10 per book. Email angela@angelamuirvanetten.com so we can exchange mailing addresses.

Need specific information on the merits of each book? Go to https://angelamuirvanetten.com/books/.

Categories
Motivation

Reach As High As You Can

Reach for the Stars

The greatest danger for most of us is not that our aim is too high and we miss it, but that it is too low and we reach it. ~ Michelangelo, artist, poet, and architect.

Billy Barty never learned to be small. He often said ‘To be BIG you must think BIG’ and he did. ~ Wesley Morse, brother-in-law of the three-feet-nine-inch tall actor and founder of Little People of America.

April 14, National Reach As High As You Can Day, is a day to reach for our dreams, aim high, or think big. Aspirational for everyone, but essential for people with dwarfism whose reach limitations touch every aspect of life. But first we must identify what we can’t do! Yes, you read that right. And here’s what I mean.

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  1. I can’t do everything, but I can do anything I want because my wants are filtered by a realistic understanding of my abilities. For example, not being able to kneel, run, or solve math problems stopped me from wanting things I can’t do. My inability to kneel ruled out pining for a plumber’s license; not being able to run suppressed my race to track athletics; and my inability to solve math problems stifled any urge to fly to the space station.
  2. I can’t accept limitations others impose on me. The uninformed may say, you can’t do that. Little do they know how motivating this is. Proving it can be done, spurs me on to show how wrong they are.
  3. I can’t do some things the same way as other people, but I can do those things differently. For example, I wash my hands in an inaccessible public bathroom by using the hand sanitizer I carry in my handbag; I reach items off a high shelf with a reacher; and I ‘walk’ distances riding a mobility scooter.
  4. I can’t believe the derogatory things people say about me. Whenever anyone has offended me, I try to raise my soul so high that the offense cannot reach it. Rene Descartes.
  5. I can’t always accept the status quo. For example, advocacy is needed to change inaccessible buildings and facilities like ATMs, elevator buttons, and self-serve gas pumps. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world. ~ Harriet Tubman, escaped slave and ‘Moses of her people’ in the Underground Railroad.
  6. I can’t accept discrimination. Being rejected because of my size is a barrier to knock down or bypass.
  7. I can’t always make it by myself. I may need help with some things, like opening a heavy door, reaching something, or changing a light bulb. And I’m okay with receiving help and giving help to others; it makes for a better world.

Finally, I can’t wait to see how aiming high leads you to achieve your goals. If you aim higher than you expect, you could reach higher than you dreamed. Sir Richard Branson, billionaire entrepreneur and adventurer.

For discussion of diverse disability issues, follow Top 100 Disability Blogs and Websites at https://blog.feedspot.com/disability_blogs/ and my Monday blog posted on feedspot.com and https://angelamuirvanetten.com/blog/.

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.

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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
Accessibility Medical

Tackling Inaccessible Medical Equipment, Part II

Cirrus DME

My first post on inaccessible medical equipment was April 19, 2021 before and after cataract surgery. Lamentably, a subsequent diagnosis of a hole in the macular mandated surgery and further access to diagnostic eye equipment. Once again, I was confronted by equipment incompatible with my height of three feet four inches.

Although two reams of copy paper enabled me to mount a chair in front of an eye scanner, I was still short of the chin rest. One imaging technician, citing rules against lifting me, suggested skipping the scan. Too bad that this would leave the surgeon without critical information for diagnostic decisions! Clearly, this was not an option.

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All I needed was another couple of inches. So I asked the technician to get another ream of paper. She complied because she had no idea what to do. I leaned left raising my right buttock cheek off the seat and had the technician slide the third ream under this side of my butt. After placing my right cheek on the ream, I asked her to push it to the other side of the chair while I scooted my left cheek onto the ream. And voilà, my torso was raised within reach of the chin rest, and the surgeon got his scan.

My annual cardiology check of my Top Hat mechanical aortic valve is also an occasion for confronting access barriers. Although the electrocardiogram (EKG) and echocardiogram equipment are accessible, the examination table is not. The technologist told me that the office did not have an accessible table because it cost $5,000 compared to the $1,500 for a regular table. The accountants won.

As a result, I declined to climb onto the exam table for the EKG and had the test while seated in a chair. The echo was a different story. Although it could be done with me seated, the result would be more accurate if I lay on the table. Here I surrendered my independence and, with assistance, climbed onto a stool then a chair and up to the table.

I’m only one of thousands, possibly millions, of people with disabilities being denied independent access to medical diagnostic equipment (MDE). So where do we go to file a discrimination complaint? The answer is NOWHERE.

Although the Architectural and Transportation Barriers Compliance Board (Access Board) technical criteria for medical diagnostic equipment (MDE Appendix to 36 CFR Part 1195) was due to expire in February 2022, the rule was extended for three years. The Board sought additional time to complete research on low transfer heights. However, the MDE rule remains unenforceable under the Americans with Disabilities Act (ADA) or Rehabilitation Act because it has not been adopted by the United States Departments of Justice (DOJ) and Health and Human Services (HHS).

So instead of filing a complaint, advocate for the Access Board to expedite the research so that accessible MDE can be mandated by enforcement agencies. And share your experiences on inaccessible MDE with Attorney Advisor Wendy Marshall, (202) 272-0043, marshall@access-board.gov.

For further reading, see Standards for Accessible MDE. A Rule by the Access Board. February 3, 2022. https://www.federalregister.gov/documents/2022/02/03/2022-02133/standards-for-accessible-medical-diagnostic-equipment For discussion of diverse disability issues, follow Top 100 Disability Blogs and Websites at https://blog.feedspot.com/disability_blogs/ You can follow my blog on feedspot or at my website, https://angelamuirvanetten.com.