Winter can feel like warfare, especially for those with mobility challenges!

Winter can feel like warfare, especially for those who use wheelchairs, walkers, canes and crutches.

A Michigan winter storm can quickly render a smooth and clear sidewalk completely inaccessible for people who need assistive mobility devices.

Wheeling a chair or pushing a walker through as few as four inches of snow escalates the amount of physical exertion required. Travelers who are not accustomed to the strain are at greater risk of a heart attack or stroke.

Moisture puddles and freezes in low-lying areas of sidewalks, and at the spot where the curb ramp meets the road surface. Usually the ice can be seen and avoided. Sometimes it’s stealthy “black ice,“ multiplying the risk of a slip-and-fall injury.

And then there are the oh-so-annoying times when snow has been cleared from sidewalks and streets, but an insurmountable ridge of crusty snow and ice has built up in the curb cut after the plow went through. 

For those with a mobility disability, traversing that ridge is like climbing Mt. Everest.

Driving an automobile to run errands in winter isn’t the answer. 

Sure, being in a vehicle reduces an individual’s exposure to snow, ice and extreme cold. Too often road crews in urban areas plow snow into accessible parking spaces until it can be loaded into dump trucks and hauled away.

Winter warfare, indeed.

Here are a few tips for running errands, even when winter weather compounds your mobility challenges:

1.    Call ahead.  Tell the business you’re coming and you use a wheelchair. If the snow isn’t cleared when you call, chances are that it will be by the time you arrive. 
2.    Is there a technology hack? If using public transportation, see if there’s a website or mobile app you can use to check conditions before you leave your residence. Occasionally snow may be too deep for buses or vans to extend a wheelchair ramp or operate a lift.
3.    Ask for assistance. If the sidewalk or curb cut is impassable, you are within your rights to ask the nearest business or residential property owner to remove it. Cities are only responsible for plowing streets. Generally, property owners have 24 hours after a snowfall to clear sidewalks. If sidewalks remain impassable 48 hours after a notice to clear walkways has been issued, the municipality can hire a contractor to remove the snow and send the bill to the property owner.
4.    “Click and collect” shopping.  Some retailers, including the Meijer store in Jenison, allow shoppers to place orders and pay online, then pickup their order curbside. A personal shopper fills the order, keeps perishable foods cool or frozen, and then loads the order into the customer’s vehicle at an appointed time. With notice, stores that offer in-store pickup of online orders may also agree to bring the order out to your waiting car. No parking, wheeling through a snowy parking lot, or in-store shopping necessary!
5.    Mail-order shopping. Order online from Target, Amazon, Wal-Mart and most other retailers and have the order delivered directly to your home in a couple of days. You don’t have to go out at all! While perishable groceries are only available this way in some major metropolitan markets, this is an easy way to replenish your pantry with many staples.

Do you have any tips or tricks?  We'd love to hear yours, comment below!

Ability Award 2015 - Deb Stanley

The 2015 Ability Award recipient has a vision of improving the lives of people with disabilities by seeing them fully integrated into our communities…. working, living, worshipping and celebrating, side by side with others in the community.

Knowing first-hand what it feels like to be the underdog, tonight’s recipient has spent most of her life protecting and defending the underdog.  Experiencing teasing and bullying and longing to fit in but not knowing how, this person could only imagine what people with disabilities must feel like as they watch from the outside.

When asked if there was a specific incident that motivated her to promote inclusion or a community without barriers, she talked of something that happened when she was in 7th grade. Upon seeing a room of children, sitting in wheelchairs and with other disabilities, she asked the teacher why these children could not be with the rest of the class. The teacher replied, “Because they have disabilities and cannot be with other children.” This did not make sense; they looked like nice children and she wanted to get to know them and be friends. She would never forget peering into that classroom window and wishing there was not a barrier between them.  She shared in her essay, “this specific incident shaped my life, although I did not realize it at the time.”

Tonight’s recipient has spent her life, teaching, advocating, and bridging the gaps in our community. Her passion for helping her students with disabilities goes far beyond the classroom. In fact, knowing how hard it was for her students to successfully find their way into the community, she brought the community to them. She started a Transitions Class and brought presenters from various agencies, careers and backgrounds to talk with the students in the classroom. Before the students graduated, 3 of the 9 in her classroom had employment.  Once the people from the community got to know her students, they were willing to hire the student.

In her essay she wrote, “I love stories of people like Helen Keller and Anne Sullivan who overcame tremendous challenges through pure grit and determination, and the people who help them achieve success.  I hope to become a part of someone else’s story of achieving goals beyond their wildest dreams.”

And that is exactly what she is doing…her career of teaching and influencing students over the years has transitioned to helping people achieve success and fulfill their dreams by connecting them to the community through meaningful employment, mentors and volunteering. She recently resigned her position from Grand Haven High School and started a non-profit called Transition Bridges.

Her goal with Transition Bridges is “to create a profile of our adults so that employers see the person they are hiring with a set of unique gifts and skills, instead of someone with special needs. People in our community need someone to be a community liaison---someone who will connect them with employment, resources, and who will be a consultant to businesses.”

“There is no blue print for this journey that I am on, just one person’s dream of answering her younger self’s question of why people with disabilities are not living, working, and participating in the same activities as those without disabilities. We all deserve the same opportunities to live, work, and experience life side by side. I have made it my life’s mission to do everything possible to make sure that happens.”

We are thrilled and honored to introduce this beautiful, humble, compassionate and genuine woman, Deb Stanley as the 2015 Ability Award Recipient! 

Deb, tonight we honor you as an individual who advocates for inclusive communities, where everyone can participate, contribute, and belong---regardless of ability.

On behalf of Disability Network/Lakeshore, we present you with the 2015 Ability Award.



Cheers for the Americans with Disabilities Act!

The Americans with Disabilities Act transformed a nation.

If ever a yearlong victory lap was in order, this is it.

The Americans With Disabilities Act became the law of the land on July 26, 1990. As the country celebrates the 25th anniversary of this monumental legislation, it’s fitting that we reflect on ways the ADA has enabled people with disabilities to participate more fully in the workforce and community life.

“I didn’t realize the ADA’s positive impact on my life until I entered college, 10 years after the ADA was signed,” said Lucia Rios, an accessibility specialist with the Disability Network/Lakeshore.

Lucia was born with spina bifida and uses a wheelchair or crutches to get around. Just 10 years old when the ADA became law, Lucia is among an estimated 55 million Americans with disabilities who enjoy greater opportunities for independence and engagement because of this quantum legislation.

“Because of the ADA,” Lucia said, “there was no question about attending a public and accessible university. When I joined the workforce four years later, I was hired by a company that made accommodations without hesitation.”

Having professional, full-time employment has made it possible for Lucia to provide for herself financially. She owns her own home and is active – really active -- in her community. In addition to her responsibilities at DNL, Lucia is a freelance writer and is currently finishing her first book.

Lucia said, that assured she could roll into higher education, employment, and an ascending career trajectory.

The ADA seeks to protect people with disabilities from discrimination in five key areas:

  •  Employment
  •  Government facilities and services
  • Public accommodations
  • Telecommunications
  • Transportation

The ADA requires accommodations to assure accessibility. These accommodations have become so commonplace that people with disabilities and their allies sometimes forget the quantum difference that eliminating physical barriers has made.

Here’s a short list of changes:

  • Designated parking
  • Ramps into public buildings
  • Curb cuts
  • Handicap accessible restrooms
  • Accessible public transportation options
  • Designated seating for people in wheelchairs at sporting events and in entertainment venues
  • Fire alarms that can be seen as well as heard

The bill, introduced in Congress in 1988, garnered bipartisan support on humanitarian grounds, but there was fierce opposition on cost.

The argument was that ADA-mandated changes might push small businesses out of business.

But the movement for disability rights surged in the wake of the Civil Rights and Voting Rights Acts. The public was recognizing the inherent fallacy of “separate but equal” facilities and services. There was a groundswell of acceptance that a more inclusive America would be a stronger America.

Advocacy from many quarters heightened public awareness, but one of the most passionate was Vice Chair of the National Council on Disability Justin Dart Jr., who traversed the nation in the 1980s to conduct public hearings to collect testimonies on disability-related discrimination.

The Disability Rights Movement found champions in the nation’s capitol among President George H.W. Bush and a cadre of lawmakers whose lives were personally impacted by disabilities.

Allies included Atty. General Richard Thornburg, whose son was left physically and mentally disabled as a result of an automobile accident, and California Rep. Tony Coelho, who had epilepsy. Advocates in the Senate included Tom Harkin of Iowa, whose brother was deaf; Ted Kennedy of Massachusetts, whose son had a leg amputated, and Robert Dole of Kansas, who sustained lingering combat injuries during World War II.

To be sure, the ideals embodied in the ADA have not been fully realized. It remains a work in progress, yet the progress over the last 25 years is astounding.

In coming weeks, we’ll look at how the ADA has affected life for people with disabilities who live on the lakeshore in the five key areas. Add comments to this story to share your own “then-and-now” observations.

“I’m fortunate that my work allows me to take on an active role in helping eliminate physical and attitudinal barriers about people with disabilities,” Lucia Rios said. “I’ve met many individuals with disabilities who have kept jobs by asking for accommodations, accessed programs for transit or housing, and retained services for additional supports.

“The ADA enables people with disabilities to sustain independent living,” she added, “and contribute to their communities.“

It's all about ability!

Few people who use white canes have progressed through rigorous college science courses to become medical doctors, but Marcia Beare says she’s ready for a white lab coat and medical school.

Beare, 46, of Martin, completely lost her sight at age two as a result of Retinoblastoma, an eye cancer that typically affects young children. She was the first blind child to be mainstreamed in Allegan County schools throughout her K-12 education.

Necessary classroom accommodations were sometimes hard to come by in the rural Martin school, which educates kindergarten through 12th grade children under one roof. But Marcia was a strong student.

Science was her passion but academic advisers steered her toward a bachelor’s degree in sociology and a master’s degree in social work, believing social work to be a profession where vision was less important.

Marcia was a social worker at Hope Network, and managed the Martin Resource Center, a charity started by her parents Harvey and Carol Visser, before joining Seeds of Grace, a free health care clinic in Allegan.

She has served as executive director since August 2011, when the clinic separated from it’s founder, who was facing felony sexual misconduct charges, and reorganized under the name Renewed Hope.

She’s proud to have led the clinic through turmoil that nearly doomed it, but she experienced a gnawing feeling that God had called her to be a doctor.

“Pursuing the goals I want, and not the goals others describe as attainable for me, makes all the difference to me,” Marcia said. “I feel like a complete person for the first time in my life.”

In 2011 Marcia returned to Calvin College in Grand Rapids, where she had earned her undergraduate degree, to take the advanced science classes she would need to apply for medical school.

She is on target to graduate with a bachelor’s degree in biochemistry in spring 2015. She has already applied to 10 osteopathic medical schools, including the one at Michigan State University in East Lansing, hoping to be chosen for an August start date.

Blindness is a formidable barrier to preparing for a career in the sciences.

Even with good quantitative and critical thinking skills, students who are blind are at a disadvantage in learning science because there is so much graphical information that is not readily available in non-visual formats.

Students like Marcia, who were born blind or lost their vision very early in life, often lack a frame of reference that sighted persons would use to describe objects to them.

Diagrams, charts and graphs must be reproduced as raised-line drawings by a $3,000 PIAF (Picture In A Flash) tactile graphic making machine so they can be read with the fingertips. Interpreting such images requires time and determination.

Equations can be written in linear form with a Brailler, but this process makes them difficult to read and manipulate.

Drawing is also important, especially in chemistry. Beare tried various assistive products, but what worked best was a wire screen in a wooden frame that her father constructed for her. Using the strong point of a Paper Mate pen (no other brand works, she claims), she can draw on thick paper placed on top of the screen. Indentations on the paper made by the pen moving over the wire screen allow her to read and label her drawings.

Although Calvin College’s high-tech PIAF machine -- and the low-tech drawing screen built by her dad -- have been indispensable, Marcia said her greatest allies in education have been instructors, lab partners and paid note-takers who are willing to help.

“Physics was very difficult for me to get through,” Marcia said. “I didn’t realize until I got into the course that my algebra wasn’t up to the level it need to be. My poor physics professor was essentially teaching me physics and math.”

To Braille, or not to Braille.

Marcia primarily uses audible versions of her textbooks, or electronic versions she can read with a text-to-voice screen reader.

Nevertheless, she did learn to read Braille, a tactile form of writing, as a young girl from a specialist who visited her three hours each week at the Martin School.

The problem with writing in Braille, Marcia said, is that no one she knew could read it. 

She grew to think of Braille as obsolete.

She was surprised, therefore, when she was able to take the MCAT (Medical College Admission Test) in Braille. She expects to learn her scores by March 1.

Marcia is buoyed by the example of Dr. David Hartman, a psychiatrist in Roanoke, Va., whom she met in 2013. Hartman lost his sight at age eight. Nine medical schools turned him down before Temple University gave him a chance.

Hartman’s quest to become a doctor is depicted in the 1975 movie “Journey From Darkness.”

Good doctors make a difference.

 Marcia has endured more than her share of interactions with medical doctors outside of the Renewed Hope clinic.

She had brain surgery in 2003 to remove a tumor on her right frontal lobe. The tumor – which doctors said formed as a result of radiation treatments she had as a toddler to arrest the Retinoblastoma – enveloped her olfactory nerve, threatening her sense of smell.

An avid equestrian, Marcia fell from her horse in 2010 and shattered her arm in more than 10 places.

After brain surgery Marcia worked hard to regain her professional vocabulary. After the badly broken arm, she battled to regain full use of her hand.

But the biggest setback, she said, came in 2011 when she lost her husband. John Beare, a machinist, to Waldenstrom macroglobulinemia, a rare blood cancer. He was 52.

These days Marcia and her dog guide, David, stay busy preparing for medical school, that long-held dream whose importance has been confirmed by two decades of living.

Marcia also makes time to counsel staff of non-profit organizations embroiled in turmoil beyond their own making. She also participates in the public speaking club Toastmasters.

Book Review - ANNIE'S GHOSTS: A Journey Into A Family Secret

ANNIE’s GHOSTS: A Journey Into A Family Secret

By Steve Luxenberg

New York: Hyperion, 2012. 401 pp. Photographs, notes, bibliography, and index. Hardcover. ISBN: 978-1-4013-2247-2.

Reviewed for Disability Network Lakeshore by Neva Kathryn Baron, nkbaron75@gmail.com, nkbaron.wordpress.com.

Annie’s Ghosts: A Journey Into A Family Secret by Steve Luxenberg is a great read. The book is a detective story, memoir, and focuses on Michigan’s history of housing people that were placed into the state hospital mental health system from the 1920s through the early 1970s. Thoroughly written from an investigative viewpoint the text dives into many topics including: family relationships, family secrets, and how cultural stigma, and being poor can dramatically influence and changed the course of a person’s life.

Luxenberg learns that his mother had a younger sister named Annie who was placed in institutional care one day short of her twenty-first birthday. Beth, the author’s mother, had kept Annie’s existence a secret. Luxenberg never knew about his aunt. After his mother passes away he eventually takes time away from his position at the Washington Post to learn all that he can through searching for and gaining access to existing medical records and any information that still exists about her. With the support of his siblings, he consults with mental health professionals, historians, and lawyers.  Also, He tracks down and interviews old family friends and neighborhood acquaintances.  In so doing, he is able explore and to place into context the how and why of Annie’s placement into Eloise Hospital in western Wayne County.

Last year, the Michigan Humanities Council chose Annie’s Ghosts as the Great Michigan Read title for 2013-2014. “This book was well received around the state – we worked directly with 300 partnering organizations, reaching more than 100,000 in discussion. It was one of the most successful discussions we’ve had yet for this program,” Kate Bartig, Communications Officer, shared with me recently via an email correspondence.

Both a reader’s guide and teacher’s guide is available to supplement the book. “The reader’s guide includes some brief book information, but provides more historical information on the topics covered in Annie’s Ghosts, such as mental health care and genealogy,” Bartig said. Those materials can be found here: http://michiganhumanities.org/programs/tgmr/previous.php.

 The author’s website is here: http://steveluxenberg.com