Categories
Transportation

Funding Crisis Called For Action

A Call for Action
Image by Christian Dorn from Pixabay 

A crisis exploded after state and federal transit funding for FY2008 (fiscal year) took a 31% cut and forced a reduction from 27 to 18 transit routes in Martin County, Florida. When the county proposed an additional 20% in budget cuts in FY2009, those unable to drive due to brain injuries, cognitive limitations, epilepsy, vision loss, and a myriad of other impairments took action.

As an advocate for people with disabilities at a Center for Independent Living, I recruited, trained, and organized transit riders to plead with the Martin Board of County Commissioners (BOCC) not to cut any funds from public transit.

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As someone who had been driving since age 18, I wasn’t the most critical person to speak. More important spokespeople were those directly affected by the cuts. We joined forces to educate Commissioners on how lives would be negatively impacted if riders couldn’t take the bus to medical appointments, work, stores, and the like. Further reduction in public transit would result in medical emergencies, unemployment, and malnutrition.

Riders dependent on public transit were trained to confront commissioners with emails, letters, individual appointments, personal impact statements, and public comments at weekly BOCC televised meetings. One rider was applauded in the BOCC chamber after telling how she was forced to ride her bike seven miles to her doctor’s office in a heat index of 107℉. This was bad enough, but what about the majority of riders who were unable to compensate by riding a bike.

The action climaxed on June 17, 2008, when 17 Community Coach public transit riders and advocates followed through on their plan to picket at the Martin County Administrative Center.  The picketers were blind or visually impaired, brain injured, mentally ill, and wheelchair users carrying hand-made pickets that read:

■ MARTIN NEEDS COACH ■ SAVE THE COACH, SAVE JOBS ■ LET ME RIDE ■ COACH IS MY LIFELINE ■ COACH IS CRITICAL ■ FULLY FUND COACH ■ NO COACH NO ALTERNATIVE ■ NO COACH NO WAY OUT

Three of the five commissioners responded to my request that they talk to individual picketers during a break from the BOCC meeting. The commissioners responded favorably to the demonstration and went on the record assuring riders that funding for the bus service would remain. Two commissioners agreed that cutting bus funding would threaten the jobs of both riders and bus drivers.

Several media reports spotlighted how proposed budget cuts negatively affected people with disabilities:

  • Daphne Duret, “Elderly and disabled ask Martin commission not to cut buses.” Palm Beach Post (June 17, 2008).
  • George Andreassi, “Disabled fight for Stuart public transit.” Stuart News (June 17, 2008).
  • R.J. Harrington, “Community Coach riders protest to keep a slice of Martin budget.” Stuart News (June 18, 2008).

Despite the warm reception at the demonstration, riders continued advocacy at the July budget workshop to be sure the commissioners didn’t renege on their agreement to spare transit from budget cuts. And the commissioners were true to their word.

So what action have you taken in response to a funding crisis? This post is a condensed version of Chapter 18, Transit Funding and Public Participation, in “ALWAYS AN ADVOCATE: Champions of Change for People with Dwarfism and Disabilities” coming in October 2021. Go to my website for book updates, https://angelamuirvanetten.com/books.

Categories
Education

Not All Advocacy Is About Disability

When I graduated from the University of Auckland in New Zealand with a Bachelor of Laws, I never dreamed that seven years later I’d be sitting in a law school classroom in Baltimore, Maryland. But my decision to marry an American and emigrate from New Zealand to the United States made further study necessary. In order to practice law in the US, I needed the American juris doctorate degree and a license to practice law in each state where I worked as a lawyer.

The University of Maryland School of Law accepted my application for admission without Law School Admission Test (LSAT) results when the administration agreed that my NZ law degree and five years law practice demonstrated the skills the LSAT was measuring—those essential for success in law school.

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However, the school denied my request for two-thirds credit for my NZ law degree even though New Zealand, like the US, was based in common law. I appealed the decision.

The assistant dean informed me of my right to bring a petition for review to the admissions committee, but warned that I was wasting my time. As the committee chairperson, he didn’t foresee a different outcome to the one-third credit the committee had approved. I told the dean it was my time to waste.

When presenting my petition, I addressed the committee members with the same respect given to an appellate panel of judges. At the end of the review hearing, the law professor who appeared to have the greatest influence on the members commented, “Well, you do act like a lawyer.” What did he expect from someone with thousands of court hours under her belt?

Despite the dean’s prediction, I did persuade the committee to change its decision. Even though I didn’t get the two-thirds credit requested, the committee compromised and gave me credit for half my NZ law degree. This reduced my law school attendance from four semesters to three and saved a significant amount in tuition fees.

I never knew if my dwarfism factored into the school’s decision-making, but they had no hesitation in providing me with reasonable accommodations for parking, an elevator key, a locker and mailbox within my reach, and a stool in the library.

In an unexpected twist, Robert began a job in Cleveland, Ohio when I still had one semester of law school to complete. Thankfully, when I presented my dilemma to the dean and chair of the administrative committee, he said they were not so callous as to expect a husband and wife to live separately. I was allowed to study at the Cleveland-Marshall College of Law—an American Bar Association approved law school—and count the credits toward my Maryland law degree. (It helped that I had already completed all the required courses in Maryland.) As a reasonable accommodation, the Cleveland law library bought the best stool I’ve ever seen—one with wide steps, hand-rails, and a platform at the top.

So what battles have you fought that are unrelated to your disability?

This post is excerpted from Chapter 5, Baltimore Beginning and Chapter 7, Cleveland Changes in “Pass Me Your Shoes.” For a full account, go to https://angelamuirvanetten.com for several retail links to the book and the opportunity to subscribe to my weekly blog.

Categories
Accessibility Accommodations

Why Did You Buy a House With a Dead Tree in Front?

Norma & Angela

In our first two years living in Rochester, New York we rented a one-and-a-half bedroom apartment with windows so high that we could only see the sky on one side and the carport roof on the other side. We bypassed properties with a view and rented a cheaper unit so we could save for a deposit on our own home. We hated not seeing out the windows, but it was the only way to accomplish our goal of home ownership.

So after being married five years, we bought a modest two-bedroom home with window views accessible to our 35-inch line of sight.

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However, our delight was not understood by our young niece who couldn’t understand why we bought a house with a dead tree in the front. As a Florida girl, she didn’t know about deciduous trees.

Among other things, we chose the house because of its accessible features and potential:

  • The attached two-car garage eliminated the need to scrape winter snow and ice off the cars.
  • The short driveway reduced the snow shoveling volume.
  • The steep steps from the garage into the kitchen could be modified with a handrail and five low-rise steps.
  • A platform lift could ride us down the stairs to the basement laundry.
  • A ramp could be placed over the steps at the front door.
  • The large kitchen could be gutted and modified to our specifications.

After a year of saving for the kitchen modifications, we retired the platforms built for our Baltimore apartment. The renovations began during a three-week visit from Eric, a contractor friend from New Zealand, when he ripped out the inaccessible cabinets before recovering from jet lag. Eric built the custom cabinet frames; inset a stovetop into one of the cabinets; painted, plastered, wallpapered, and replaced missing floor tiles.

After Eric’s departure, we hired a carpenter who was visually-impaired to design, build, and install the pullout drawers and cabinet doors. Robert recognized the carpenter’s talent when he provided his rehabilitation engineering services to equip the carpenter with assistive technology to access the design program on his computer.

Snow covered the yard when we made an offer on the house, so when the snow melted it uncovered too much garden for us to manage. But instead of returning the garden to lawn, we accepted a sharecropping offer from my co-worker, David, and enjoyed an abundance of fresh vegetables.

Instead of hiring a contractor to mow the lawns, we bought a riding mower with a grass catcher that we could slide on and off and added a foot pedal extension. Robert’s job was to maintain the mower and mine was to ride it. The novelty of mowing lawns for the first time in my life quickly wore off when the hose kept disconnecting from the catcher spraying grass everywhere, and the vibration distressed every joint in my body. And we won’t even talk about all the leaves that “dead tree” dropped in the Fall.

So tell me about modifications you’ve made in your home.

This post is excerpted from chapter 9, Home At Last, in “Pass Me Your Shoes.” For a full account, go to https://angelamuirvanetten.com for several retail links to the book and the opportunity to subscribe to my weekly blog.

Categories
FAQs

Are You Disabled?

Frequently Asked Questions
Image by Gerd Altmann from Pixabay

As much as people love to wear designer labels, many are uncomfortable wearing the disability label. This is often true of people who acquire disabling conditions as they age. I saw this when I worked as an advocacy specialist for a center for independent living and the intake paperwork required me to document the individual’s disability. A 92-year-old woman who ambulated with a walker surprised me when I asked what to record for her disability. She said, “I don’t have one.” Clearly she met the ADA definition of disability as one having a substantial limitation on the major life activity of walking. But once she understood only people with disabilities qualified for my help, she conceded that the disability label suited her.

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Actually many people with disabilities reject the disability label. Despite having substantial limitations in major life activities—breathing, hearing, learning, reaching, sleeping, or talking, to name a few—they reject the limitations associated with disability and in so doing reject the label. They have adapted and are able to do whatever they set their sights on. It’s the attitudes of others towards them they see as disabling.

In the post ADA era, it’s generally unlawful to ask someone if they have a disability and people with disabilities are not obligated to disclose their disability. The exceptions being if a reasonable accommodation is requested or disability is a qualification for the service offered.

In the employment context, the dilemma comes when completing job applications which include a check box for disability. Should the applicant leave the box blank or check yes? It’s a personal choice with pros and cons for each decision.

The downside to leaving the box blank is that you miss the employers who are open-minded or looking to increase diversity and favor people with a disability. It also means, that to be consistent, you scrub your Curriculum Vitae clean of volunteer activities that suggest you have a disability. So it’s important to do your homework on the employer before making a decision. You need to know if diversity is encouraged; this is often the case in higher education and larger companies.

The upside to not answering the question is that you remove the opportunity for the employer to trash your application based on preconceived notions that people with disabilities make staff and customers uncomfortable, have more accidents on the job, and need costly accommodations. Of course, an employer who weeds out applications based on a disability identification is discriminating, but finding evidence to prove it is near impossible.

In the case of dwarfism, nondisclosure is moot once you get to the interview. Even though employers cannot lawfully ask if you’re disabled, they can ask how you will perform the job duties. This is the time to request a reasonable accommodation if you need one to make your performance possible. It’s also a good time to share the disability volunteer experience you may have scrubbed from your CV.      

So how do you answer the question, “Are you are disabled?”

For more of my writings on employment discrimination, check out the first two books in my dwarfism trilogy, Dwarfs Don’t Live in Doll Houses and Pass Me Your Shoes, at https://angelamuirvanetten.com/books.

Categories
Disability Rights

Advocacy Makes Change Possible

Boarding bus

Seventeen years ago today, God granted me the desire of my heart when the Coalition for Independent Living Options, Inc. (CILO) hired me as an advocacy specialist in Stuart, Florida.Only in hindsight could I see how—all through the years—God had prepared me for this position:

  • As a dwarf, I lived the disability experience, and advocated for my own acceptance as an equal contributing member of society.
  • I had law degrees in New Zealand and Maryland and admission to the bar in New Zealand, Ohio, and New York.

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  • As a lawyer in New Zealand, I advocated for clients in civil and criminal courts.
  • As a project editor for Thomson Reuters, I wrote disability civil rights law books for lawyers.
  • As a volunteer, I served as a board member of Centers for Independent Living in Ohio and New York.
  • As an LPA volunteer, I was a leader in banning dwarf tossing in licensed establishments in New York and Florida, and breaking the six-inch reach barrier in buildings and facilities open to the public throughout America.
  • As a staff writer for the Christian Law Association, I wrote religious liberty articles and training materials for nonlawyers.

Although I retired from CILO three years ago, I now work as an author and voice for people with dwarfism and disability. I write a weekly blog and have written two books. The third book in my dwarfism trilogy—ALWAYS AN ADVOCATE: Champions of Change for People with Dwarfism and Disabilities—is due to release in the Fall of 2021. My purpose is to offer hope to those who are skeptical about changing society’s discriminatory treatment of people with dwarfism and other disabilities.

I believe that advocacy makes change possible when people call out what is wrong, care enough to stand up for what is right, commit to the cause for as long as it takes, and choose the right forum. Just as important is collaborating in coalitions with like-minded people and organizations, communicating with honesty and respect, and having confidence in God’s power to change hearts.

Always An Advocate repeatedly demonstrates the power of advocacy:

  • Titans of industry were required to lower ATMs, gas pumps, and elevator buttons to be within reach of people previously ignored.
  • Public transportation must be accessible.
  • Cheering crowds applauding dwarf tossing contests were silenced.
  • Volunteer leaders successfully fought for organizational change and civility.
  • Homeowners received reasonable accommodations to override discriminatory rules associations made about pavers, parking, service animals, and the like. 
  • Voters used accessible equipment in accessible facilities served by staff trained in disability sensitivity.
  • Emergency service plans included people with disabilities.
  • People whose disability made them unable to work were successfully represented and approved for social security benefits.
  • School children received an Individual Education Plan providing them with a free and appropriate public education.

Put this book on your “want to read” list and be inspired to advocate for the changes you—and others—need. It can be done.

For updated book release information, go to https://angelamuirvanetten.com. Please subscribe to my blog and receive automatic delivery of weekly posts to your email inbox.

Categories
Celebrations

Not Your Typical Mother’s Day Story

Mother's Day

Mother’s Day is a bittersweet day for Robert and me. The sweet memory is our 1981 engagement announcement on Mother’s Day and the bitter is that only one year earlier my mother lived her last full day on earth. Barbara Mary Muir died at age 45 of melanoma cancer, the deadliest form of skin cancer. And Robert’s mother only lived to see six of our almost 40 years of married life. Irene Maria Van Etten died at age 73 of lung cancer, the leading cause of cancer death in both men and women.

Every Mother’s Day we remember them both with love and gratitude for all they did for us. At the same time, we regret that they didn’t live longer to enjoy the adventures of their adult children and grandchildren. And maybe they would have lived longer if they knew then what we know now.

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May is Melanoma Awareness Month which stresses the importance of skin protection and early detection. In honor of my mother, please allow me to share tips from the American Academy of Dermatology to protect your skin from the sun’s damaging ultraviolet rays and reduce your risk of skin cancer:

  • Seek shade when appropriate, especially when the sun’s rays are strongest between 10 a.m. and 2 p.m.
  • Wear sun-protective clothing, such as a long-sleeved shirt with an ultraviolet protection factor (UPF) label, pants, a wide-brimmed hat and sunglasses with UV protection.
  • Apply a broad-spectrum, water-resistant sunscreen with an SPF of 30 or higher, even on cloudy days.
  • Reapply sunscreen every two hours, or after swimming or sweating.
  • Avoid tanning beds. 
  • Perform regular skin self-exams to detect skin cancer early, when it’s most treatable. See a board-certified dermatologist if you notice new or suspicious spots on your skin, or anything changing, itching or bleeding.

November is officially Lung Cancer Awareness Month, but Robert and I remember it on Mother’s Day. Robert’s mother smoked cigarettes which, in the United States, is the number one risk factor for lung cancer and is linked to about 90% of lung cancer deaths. According to the Centers for Disease Control and Prevention people who smoke cigarettes are 15 to 30 times more likely to die from lung cancer than people who do not smoke.

In honor of Robert’s mother, please listen to medical advice and stop smoking or, better yet, never start. But if smoking has already put you at risk, don’t despair—it’s never too late to stop.  Quitting smoking at any age lowers the risk. And know that when lung cancer is caught early, successful treatment is possible. Those at high risk for developing lung cancer are urged to take preventive measures with annual screening using low-dose CT scans.

It’s understood that God determines our length of days on this earth, but let’s do our part not to cut them short by poor choices.

What are you doing to honor your mother?

For more of my writings, check out my website at angelamuirvanetten.com.

Categories
God's protection

America’s Heritage of Prayer Continues

Women in prayer
Image by Candelario Gomez Lopez from Pixabay

The National Day of Prayer invites people of all faiths to pray for America on the first Thursday of each May. Although President Harry S. Truman signed a joint resolution of the United States Congress reserving this annual date in 1952, public prayer and national days of prayer were not new. In 1775, the Continental Congress asked the colonies to pray for wisdom in forming a nation and to establish America’s peace and freedom upon a solid and lasting foundation. And in four consecutive centuries, Presidents have declared national days of prayer for various reasons: 

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  • Expressing gratitude to “Almighty God in peaceably allowing a form of government for the safety and happiness of the people.” George Washington (October 3, 1789)
  • Encouraging humility before God and seeking His Divine mercy during a cholera epidemic. Zachary Taylor (July 3, 1849)
  • Acknowledging “our dependence on Almighty God and to implore His aid and protection” during World War I.Woodrow Wilson (May 11, 1918)
  • Honoring the memory of the September 11, 2001 victims and comforting those who lost loved ones. George W. Bush (September 14, 2001)
  • Rededicating ourselves to extending religious freedom to all people. Barak Obama (May 5, 2016)

Thankfully prayers are not limited to national days. People pray every day of the year and people with dwarfism are no exception. Although we pray about the same concerns as all humanity, we have more than our share of medical requests.

In a private Facebook group to which I belong, many seek and appreciate prayers. An inclusive request invites positive thoughts from those who do not pray.

The requests range from looking for a diagnosis or a qualified physician with dwarfism experience, a helpful doctor’s appointment, successful surgeries, good physical therapy results, to pain management. Some pray for a first time surgery and others that a surgery will be the last in a long succession. Prayer for unbearable, chronic pain which reduces quality of life to nothing is common.

Group members commit to pray, share good thoughts, and send get well wishes with a generous dose of emojis. Prayers are offered for surgeries with excellent results, quick recoveries, healing, daytime pain reduction, pain free nights, sleep, peace, courage, and perseverance.

Along with the prayers comes love, hugs, encouragement, advice and comfort from those with similar experiences. It helps to know we are not alone. We accept advice from someone who feels our pain, concedes that the road is tough, encourages us to set little goals at first, reminds us to take one day a time, and confidently asserts “you’ll get there!”

“God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.”  2 Corinthians 1:3-4 (New Living Translation).

Categories
Awareness

Plan to Stay Safe

Firemen
Image by Matthias Groeneveld from Pixabay

What words come to mind when you read the following list: earthquakes, floods, hurricanes, tornados, tsunamis, volcanoes, wildfires, winter storms? I think of danger, death, and destruction. But on April 30, National PrepareAthon! Day, we can plan so that death is not a consequence of any of these disasters.

Thankfully we don’t have to plan for every kind of disaster where we live. But we do need to be aware of, and ready for, potential hazards in our locale. The first step is to be informed when disaster is imminent. Signing up for emergency phone alerts gives us life-saving information targeted to our area.

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This emergency alert system will also broadcast on TV and radio. But a battery-powered or hand crank radio and a NOAA Weather Radio with tone alert are essential when the power goes out.

Safety should drive our decision whether to shelter in place or evacuate. Follow advice of emergency management officials on this one. For example, if your home is built to withstand hurricane force winds, it’s okay to hunker down behind shuttered windows. But don’t wait until the last minute to ask someone for help with your shutters. They’ll be too busy with their own place and you’ll be left blowing in the wind.

If your home can’t be made safe, decide whether you’ll evacuate to family or friends in a safe area or go to a general population shelter. Check in advance which one works for your disability and plan how you’ll get there. Do you have enough gas in the car? If you don’t have a vehicle and need accessible transportation to a shelter, make sure you’re on the manifest for a ride in an emergency. If you have medical equipment that requires electricity and you don’t have a generator at home, plan on going to a special needs shelter where you can stay connected to a power source. Find out if pre-registration is required. Those dependent on dialysis or other life-sustaining treatment need to find out where they should go.

If evacuation is ordered, learn the evacuation routes. Safeguard important and valuable papers, including model numbers and providers of assistive technologies so it can be replaced if lost or destroyed. Withdraw some cash.

Update your emergency supply kit, both at home and in the car, that includes water, nonperishable people and animal food, first aid supplies, and Bible. This is critical for survival if you lose power or get stranded in your car.

If separated from family during an emergency, know how you’ll contact one another afterwards. Establish a family meeting place that’s easy to find. Create phone contact lists for family members so you can text them with your location. Help rescue workers reach your loved ones if you’re incapacitated; type “ICE,” the acronym for “in case of emergency,” before a person’s name in your cell phone so they know who to call.

So how far along are you in your emergency planning? Procrastination could be a costly mistake.

This post highlights FEMA guidance at https://www.ready.gov/plan and should be consulted for other important details. Also see Emergency Management. National Council on Disability, accessed April 20, 2021. https://ncd.gov/policy/emergency-management and An ADA Guide for Local Governments. Making Community Emergency Preparedness and Response Programs Accessible to People with Disabilities, accessed April 20, 2021. https://www.ada.gov/emergencyprepguide.htm

Categories
Accessibility Medical

Tackling Inaccessible Medical Equipment

Cornea Diagnostic Equipment
Cornea Scanner

In 2020, I had eye surgeries to remove cataracts, implant intraocular lenses, and remove scar tissue that developed behind each implant. I enjoyed throwing out my old contact lenses and donating my eye glasses to charity. But the inaccessible medical equipment challenged my independence.

After 45 years of regular eye doctor visits, I was accustomed to being unable to reach ophthalmic diagnostic equipment. Typically, I gained the extra inches needed by stepping up onto a phone book. However, this simple solution was unavailable during my 12 pre- and post-op visits. Besides, who has phone books anymore?

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I rejected the step stool staff offered explaining that my knees don’t bend and I couldn’t step onto it. Not ready to give up my independence, I also vetoed staff lifting me onto the stool. I chose to stand on reams of copy paper to gain additional height. Success. What I didn’t know was that we weren’t done.

Next was the cornea scanner. But copy paper wasn’t enough to elevate me to this machine and there was no escaping a stool. Yet I still insisted on accessing the equipment without being lifted. Fearing my fall, staff hovered close by as I used reams of copy paper to create a small step next to the stool and from there swing my leg up onto the stool. Independence maintained.

A couple of months later, I was challenged by an Ophthalmic Yag Laser System at the outpatient surgery center. The equipment accomplished two things: removing the unwanted membrane behind my lens implants and infringing on my independent access. None of my prior strategies got me high enough. I had no choice but to allow the surgeon to lift me onto a chair. But before doing so, I checked if he had a back problem and disclosed my weight. He assured me that he lifted weights way heavier than me in the gym.

Laser Surgery Machine
Laser Surgery Machine

After the procedure, I kicked into advocacy mode. Not everyone has a surgeon who can lift weights heavier than their patients. And what about wheelchair users who can’t stand on the floor let alone a chair? Because the surgeon has a financial interest in the surgery center, I put him on notice that I would be calling on him in the future to be pro-active in ordering accessible medical equipment. Documentation with photos, laid the groundwork for my communication with the manufacturer.

I later learned that the Architectural and Transportation Barriers Compliance Board had issued technical criteria for medical diagnostic equipment (MDE) to be accessible to, and independently usable by, patients with disabilities, to the maximum extent possible. Although the MDE Appendix to 36 CFR Part 1195  has been effective since February 8, 2017, it cannot be enforced because authorities like the United States Departments of Justice (DOJ) and Health and Human Services (HHS) have not adopted the MDE Standards as mandatory requirements for entities subject to their jurisdiction.

Does anyone hear the call to advocate for making accessible MDE mandatory? What’s your experience with MDE?

For additional reading, see Standards for Accessible MDE. A Rule by the Access Board January 9, 2017, accessed on April 15, 2021. https://www.federalregister.gov/documents/2017/01/09/2016-31186/standards-for-accessible-medical-diagnostic-equipment and “Access To Medical Care For Individuals With Mobility Disabilities.” United States DOJ and HHS 2010, accessed on April 15, 2021.  https://www.ada.gov/medcare_mobility_ta/medcare_ta.htm.

Categories
Celebrations

Celebrate the Gift of Siblings

Siblings Farewell Sydney

Over two-thirds of Americans have at least one sibling. The relationship is one of the most important and usually the longest in a person’s life—typically longer than with parents, spouses, or children. So let’s celebrate our brothers and sisters on April 10, #NationalSiblingsDay.

To the outside world, we all grow old. But not to brothers and sisters. We know each other as we always were. We know each other’s hearts. We share private family jokes. We remember family feuds and secrets, family griefs and joys. We live outside the touch of time.

Clara Ortega

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The siblings of people with dwarfism and disability are especially worthy of praise. As children, many siblings endure more public attention than they want and less attention from parents than they need. Parents love them just as much but, at times, the medical and other needs of their sibling with a disability are all consuming. To cap it off, siblings are often assigned extra duties to help out their brother or sister.

When I was writing “Dwarfs Don’t Live in Doll Houses,” the 1988 memoir of my childhood and young adult years, I asked my brother, Greg, and sister, Deborah, what it was like growing up with me.  Here are some of their reflections:

 It used to make me mad when people stared at you.

I received [a] bloody nose at school from Terry for teasing me about you. . . we had a fight and I came out second best.

It used to annoy me when people fussed over you, knowing that you thought them silly as well. . . but that kind of attention I never wanted anyway.

As for their response to being asked to do things for me—like carry my sun chair down to the beach or my book bag home from school—their recollections varied from annoyance to wincing when watching me carry a bag half my size. For the most part, I was independent and my disability wasn’t on their minds. “At home, I was the older sister and that’s how things were – just that.”

We enjoyed a happy childhood together in New Zealand, but as adults lived with our spouses in Australia and America. Despite the long distance, we continued to share our love and concern for each other. We have traveled thousands of miles to vacation together in all three countries. When visiting in the homes of my siblings, they made accommodations for Robert and I to be independent in the bathroom and kitchen.

As we have grown older and less mobile, Greg and Deborah have pushed wheelchairs, lifted scooters, and helped us up many stairs. In recent years, we have celebrated decade birthdays together with the destination chosen by the one with the birthday. Our 50th birthdays took us to Sydney, Australia; Key West, Florida; and Whangamata, New Zealand; our 60th birthdays were in North Carolina, New York, and Hawaii.

Why wait for your sibling’s birthday? Celebrate them his week. Share how much they mean to you.

For more of my writings, subscribe to my weekly blog at https://angelamuirvanetten.com/ Used print books of Dwarfs Don’t Live in Doll Houses are available on Amazon.com; an e-book is coming soon.