Month: May 2022

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.