Disability Network

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.“

Man With Quadraplegia Running Successful Custom Apparel Business, Thanks to Supported Employment

Eric Patrick Thomas is a business owner on the move.

Eric opened EZ Awareness by Design, a graphic arts business, in his hometown of Flint three years ago. He’s already won a statewide Entrepreneur of the Year BOOM (Be Our Own Motivation). The Flint and Genessee County Chamber of Commerce has honored him with its Spark Award, because his business is a rising star.

Eric Patrick Thomas

Eric Patrick Thomas

Not bad for a guy whose only voluntary movements are achieved through puffing on a straw mechanism mounted on his wheelchair.

“I feel blessed because I’ve found support to help me do what I want to do,” said Eric, 36, who emblazons his own T-shirts with this word: Inspire.

“For all the tough times Flint has had,” Eric continued, “the business community here has been just terrific in helping and teaching me. Branding is essential and even my competitors in the sign business know there is enough work for all of us.”

Eric was 20 years old, living in Lansing and attending Lansing Community College, on Sept. 20, 1997, when he got in the way of random gunfire. He’s got a bullet lodged in his third vertebrate, causing paralysis in all four limbs.

The night he was shot, he was hosting a party to celebrate the release of his hip-hop group’s first album. It wasn’t a loud, out-of-control party, but a couple of hundred people showed up. Eric admits he didn’t know everybody. He remembers going outside to make sure the crowd wasn’t spilling over onto his neighbor’s property. He was standing in his front yard facing guests on his porch when someone fired a gun from the street.

As Eric collapsed, guests scattered like gunshot, afraid of being arrested for under-age drinking when police showed up. Friends who stayed to help Eric didn’t see the shooter. Some thought gun had been fired from a vehicle; others said the shooter was on foot.

Nobody was ever arrested. Eric’s not sure how much effort police poured into an investigation. He laid in a hospital on a ventilator communicating the best he could through eye blinks and tongue clicks. Over the next few years, Eric said it required all his energy to learn how to live in his changed body.

“After a serious injury, you’re either going to live or die,” Eric said. “Since I survived, I want to make the most of the life that was almost taken away. I want to show that true quality-of-life still exists. You’ve just got to have some support.”

Eric spent six months in a Colorado hospital being weaned off the ventilator. There he also learned how to hire and train the staff for the 24/7 care he’ll need for the rest of his life.

Eric returned to his parents’ home in Flint, where he worked with his local Disability Network to set up a self-determination arrangement. As his independence and finances allowed, he rented an apartment, then a house.

His next goal: To own a fully accessible home. He dreams of having a bathroom he can actually bathe in.

Eric resumed his studies at Mott Community College and Wayne State University, but public transportation wasn’t always dependable or convenient. Twice he has conducted successful fund-raising campaigns for accessible vans.

Eric tried pursuing career interests in music management and photography after the accident, but it didn’t work out. Television shows like American Idol and The Voice, which culminate with recording contracts to winners of three-month talent shows, have skewed expectations of young talent about how long it will take to “make it,” Eric said. The adaptive equipment he needs for photography wasn’t manufactured until recent years.

He started reporting for an entertainment newspaper, but the publication died. He started an Internet radio station, but that didn’t take off, either.

There is no such thing as failure, Eric said. Disappointments are welcome mats for “growth spurts.”

Imagining his artistic eye would be good for graphics, Eric told his parents and professionals in his support circle at an annual meeting that he wanted to open a custom apparel company.

“A person-centered plan is the best thing you can do because it puts what you want out there,” Eric said. “Talk about your long- and short-term goals, and have somebody write on flipcharts. Your support circle discusses how to make it happen. Some things take years to accomplish but, somehow, amazing things happen.”

Eric’s circle grew to include a Medicaid-funded supported employment program through Michigan Rehabilitative Services. He worked with Goodwill Industries to develop a business plan and found the perfect investor: Ziad Kassab, who started several successful businesses to benefit people with spinal cord injuries.

Ziad (the “Z” in EZ Awareness by Design) loaned capital to buy equipment. He also mentors Eric from his Rochester Hills headquarters via Skype.

Eric hired a graphic designer who was also willing to be trained as his day-time direct care assistant, since he couldn’t afford two employees during the same time period. Business gradually grew from five hours a week to full time.

“I didn’t know that our equipment could also be used to produce banners, interior and exterior signs,” Eric said. “It was owners of other sign companies who taught me.”

A reciprocal arrangement has developed with a sign company that has an electrician and a boom truck. In exchange for access to those services, EZ does some of the other company’s design work.

Eric has invested all earnings back into his company. He figures he needs to clear at least $100,000 per year before he starts drawing a paycheck and his supported employment payments end. He says he needs a six-figure because of his medical needs and having to employ assistants around the clock, he said.

Eric is the first person in his area to use the supported employment program, but he hopes others follow.

“It doesn’t happen overnight, but you can reach your dreams,” said Eric, who gives several motivational speeches each month.

Next he’d like to play a role in starting a textiles mill in his hometown. He says he’d be proud to sell custom apparel that’s 100 percent Flint made.

And he says he’d love to provide good jobs to strengthen the struggling community that supported his personal comeback.

A.T. to the Rescue!

As someone who works with Assistive Technology (A.T.) devices on a daily basis, I’ve seen first-hand what A.T. can do to help people with disabilities remain independent.  Technically, assistive technology is any device, equipment, or item that lets a person with a disability be more independent and have an improved quality of life. 

Automatic door openers are considered assistive technology.

Automatic door openers are considered assistive technology.

All of us use A.T. on a fairly regular basis.  If you don’t think so, consider that every time you put on your glasses, you’re using A.T.  That’s also true of each time you turn on your air conditioner, dishwasher, wash machine or dryer.  There are so many items that fall under the category: items to help with cooking and cleaning, dressing and grooming, cognitive improvement devices, recreation items, devices to improve mobility and environmental controls.  There are literally thousands of items, all designed to help you remain independent.

If you need any of these items, you’ll likely be glad to learn that many of them aren’t overwhelmingly expensive.  Many A.T. devices cost less than $50, with a substantial amount under $20.  For higher priced items, Michigan participates in a Federal Loan Program called the Assistive Technology Loan Fund (ATLF).  The ATLF helps people with disabilities who can’t afford A.T. purchase what is needed.  Those who have a disability, guardians or family members, may borrow up to $30,000. 

Disability Network/Lakeshore is the site for the ATLF in Allegan and Ottawa Counties.  If you’re looking for help in either identifying assistive technology to help you remain independent, or paying for it, please call the DNL office.  We’d be delighted to assist you!

Chris Wistrom, chris@dnlakeshore.org

Air Travel Travel Still Has a Long Way to Go

Between business and pleasure travel, the Rev. Terry DeYoung makes several international and domestic flights each year.

 And he says he’d always rather drive.

 DeYoung -- coordinator of disability concerns for the Reformed Church in America and a member of Disability Network/Lakeshore’s Board of Directors – has used a cane for 30 years. Sometimes he uses two. With lots of distance to cover in airports, DeYoung uses a wheelchair, a “terminal” convenience that pre-dates the Americans With Disabilities Act.

 Express security lines for travelers with disabilities and family-sized restrooms with room to maneuver make airports easier to navigate, but that doesn’t change DeYoung’s opinion. He’d still rather drive.

 “Air travel is dreadful because of airplanes,” DeYoung said. “The narrow aisle, placement of tiny restrooms and tight seating is challenging for the able-bodied.

 “For travelers with mobility problems,” DeYoung added, “airplanes are just miserable.”

 Have you ever seen someone in a power chair on an airplane?

 “No,” DeYoung sighed. “I doubt there’s not enough room on an airplane for that.”

 DeYoung’s bias for driving may be a family trait.

 His father, Peter DeYoung, makes the marathon drive from his home in Wisconsin to accommodations in sunny Arizona every winter, and drives back each spring.

 The elder DeYoung, 88, lost his leg in a farming accident 20 years ago. DeYoung says his Dad gets annoyed having to take off his prosthetic leg to have it X-rayed for contraband. Security agents also have him remove the shoe from the prosthetic so it can be X-rayed separately.

 It’s a lot of maneuvering to manage from crutches, especially in front of an “audience” of passengers eager to board.

 “Dad says he’d rather drive 2,000 miles than go through that,” DeYoung said.

 He has his own horror story.

 In January he flew unaccompanied from Grand Rapids to Rochester, Minn., for a follow-up appointment after knee replacement surgery. He planned to stay over only one night.

But heavy snow in Grand Rapids caused postponement of the last leg of his flight home. All the hotel rooms in Minneapolis were full. He was going to have to spend the night in the airport.

Hygiene packets and sleeping mats were furnished to all stranded passengers. DeYoung said he needed assistive tools that were packed away in checked luggage to use the personal care items, but was told by airline representatives that it would take several hours to retrieve it.

If he got the checked suitcase, DeYoung knew he’d have a hard time dragging it and his carry-on bag.

He couldn’t use the mat because he can’t get down or up from the floor without assistance, and sleeping in a chair triggered a terrible headache.

 DeYoung said he called a telephone number he found on the airline’s website that passengers needing assistance could call.

It wasn’t staffed after 5 p.m. 

“Weather-related flight cancellations are especially hard on travelers with disabilities,” DeYoung said. “There doesn’t seem to be anything in the booking system that signals to the airlines that certain travelers may require help that wasn’t requested in advance. “ 

There will be long lines of passengers trying to book alternate flights, DeYoung said, and disabled passengers are probably going to be in those same lines.

DeYoung had a conversation with the airline about his experience in Minneapolis that he hopes will inspire round-the-clock assistance for stranded travelers with limited mobility. 

And that’s why, despite improvements in air travel, driving is usually still the more accessible choice. 

Tell us in the comments below - what has been your experience with air travel?

Taking Care

Disability Network/Lakeshore staffer, Chris Wistrom, wanted to share some thoughts with all of you!

I had a “eureka” moment yesterday, the kind where you realize that you haven’t been entirely truthful with yourself.  You see, this past year has been a really rough one for me, and to compensate for that, I’ve been pampering myself.  Notice the terminology there:  I “pamper” myself, instead of “take care” of myself.  You might ask, “What’s the difference?” 

Pampering is a form of self-gratification (at least my case).  I allowed myself to eat whatever I wanted rather than making healthy meals.  I put off exercising.  I felt I deserved to pamper myself to compensate for all the stress in my life. 

Taking care would have made much more sense.  Taking care would have meant not giving in to indulgence, but rather making healthy choices.   My “eureka” moment was about how much better off and healthier I’d be right now if I “took care” of myself. 

Michigan’s Strategic Plan includes a section called “Health Promotion for People with Disabilities.”  You see, they have realized a lot of people in Michigan are doing what I’ve been doing: pampering instead of taking care of themselves.  It’s a situation that has grave implications, no pun intended, especially for people with disabilities.

The Strategic Plan recognizes “there is a strong relationship between disability and chronic disease.”  In other words, if you have a disability to begin with, it’s more likely you’ll acquire other chronic conditions too.   It’s hard to manage a chronic condition when you have a disability.  It’s hard to deal with a disability when you’re trying to manage a chronic condition.  Health Promotion for People with Disabilities works on the premise that, “…all people can be healthy within their own parameters, and that everyone can do something to improve their health and the quality of their lives.

There are over one and a half million people in Michigan with a disability.  There is a greater chance that we will have more problems with obesity, smoking and lack of exercise than people without disabilities.   That makes sense.  It’s more difficult to burn calories when you have limited range of motion or restricted use of your large muscles.  We have more trouble exercising.  Let’s face it, who wants to exercise when your arthritis hurts, or when you can’t walk or run?  How many exercise machines do you see at the gym designed for people with disabilities?  Not too many, I’ll bet!

Now that I’ve seen the light, so to speak, I’m determined to take care.  I’ve made a plan, set some goals.  I am taking control of my own life and I refuse to let stress lure me into thinking it’s okay to pamper myself.  Instead, I am going to take care of myself.

I don’t want to reach my so called “golden years” and find I have to live out the remainder of my life in a nursing home…or that I don’t have any life remaining!  I especially don’t want to be dependent on others for things I can do for myself.  I bet you don’t either, so, please, take care, my friend… take good care.

For more information, go to: http://www.michigan.gov/documents/mdch/Health-Promotion-People-with-Disabilities-Mich-Strategic-Plan-2012-14_384839_7.pdf.