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At this time twenty years ago, I was a carefree teenager looking forward to getting my driver’s license. Disability was a word I hardly knew.

Fast forward to the present, I am a graduate student able to access my college library through power-assist doors and an elevator that takes me all the way to the fourth floor. These are just some of the benefits I have through the Americans with Disabilities Act.

It was twenty years ago this past Monday, July 26, that President George H.W. Bush signed the ADA. This legislation has allowed me, and millions of other Americans living with a disability, to enjoy the same livelihood as other able-bodies Americans.

To celebrate this important landmark legislation, we wanted to share with you the op-ed piece that was written by our friend and colleague Susie Rood, director of Student Disability Services at Central Michigan University. Her involvement in advocacy work related to disability services spans more than a decade, and we are empowered by what she has to say.

We hope you are too, and we invite you to share with us what doors the ADA has opened for you and your loved ones.

Americans with Disabilities Act celebrates 20 years
by Susie Rood, CMU Student Disability Services Director

Kentucky’s Republican Senate candidate Rand Paul – the son of Rep. Ron Paul, R-Texas – sparked some unsettling feelings in the disabled community this spring with comments he made in a National Public Radio interview.

NPR’s “All Things Considered” host Robert Siegel asked Paul, in part, if he thought the Americans with Disabilities Act was an “overreach” and “… that business shouldn’t be bothered by people with the basis in law to sue them for redress?”

Paul responded, “Right. I think a lot of things could be handled locally. … I think if you have a two-story office and you hire someone who’s handicapped, it might be reasonable to let him have an office on the first floor rather than the government saying you have to have a $100,000 elevator. …”

Regardless of how a person feels about what Paul said, his comments generated lively political discussions in the months leading up to a milestone in ADA history.

This week marks the 20th anniversary of President George H.W. Bush signing the Americans with Disabilities Act into law and proclaiming, “Let the shameful walls of exclusion finally come tumbling down.”

This historic piece of civil rights legislation was pivotal in providing equal access for individuals with disabilities in areas such as employment, entertainment and housing. Perhaps Paul’s seemingly controversial comments illustrate the extent to which the ADA has become more commonplace over the past two decades, and the commonsense “why wouldn’t you?” attitude is exactly what the ADA was intended to foster.

Before the ADA, accommodating one individual over the convenience of others wasn’t even considered. Now universal design features – such as buildings that are accessible with curb cuts and automatic door openers, soap and paper towel dispensers that don’t require pulling a lever, and open captioning on television sets – are standard.

While not directly intended for able-bodied individuals, we all benefit from these conveniences. After all, how many of us have used a pedestrian ramp to a football stadium or a curb cut at the grocery store and been thankful there weren’t steps?

As with all civil rights legislation, the ultimate goal is for it to not be needed; to have a society in which all individuals are treated with respect and dignity and every person has equal rights and access. Because of this, common occurrences in our daily lives now include seeing signs for wheelchair access, finding assistive listening devices at movie theaters as well as seeing an individual using an assistive animal. Without access to such resources, these individuals would not be able to fully participate in our society.

It is very difficult to legislate civility, which is the underlying goal of all civil rights legislation. Such legislation will no longer be necessary when the founding principles of America and these laws become a part of our accepted everyday lives. While we’re making strides, we unfortunately are not completely there.

Jennifer and I, along with her care coordinator Rochel Genge, R.N. and others from Region VII Area Agency on Aging, interacted with many elected state officials at the third annual Older Michiganians Day in Lansing on June 10.

Self portrait of Jennifer & me getting political at the Capitol

Jennifer & Rochel after our chance meeting with Rep. Caul

We even have photographic proof that we advocated for the MI Choice Medicaid Waiver Program through impromptu conversations with influential legislators Sen. John Gleason, Sen. Deb Cherry and Sen. Roger Kahn on the lawn in front of Michigan’s State Capitol Building. While we have met Sen. Cherry and Sen. Kahn before (see related post here), this was the first time we met Sen. Gleason.

Jennifer followed up with Sen. Gleason after he spoke to the more than 600 OMD participants to thank him for supporting the Waiver program.

But we forever will get giddy when we think and talk about our chance meeting for which we have no picture. No picture because we never expected to run into our State Rep. Bill Caul in the House Office Building hallway as he was rushing to get to a meeting in the Capitol Building across the street .

Sure, we were on our way up to his office to remind him of MI Choice Waiver Program and how it saves the state millions of dollars and how it is making it possible for Jennifer—one of his constituents—to continue living in her own home and positively contributing to her community. But as we made our way to get in line for the elevator, Rep. Caul made his way around the hallway corner and I whispered to Jennifer, “That’s Bill Caul right there!”

Jennifer made a split-second pause to increase the speed of her power wheelchair and, without saying a word to me, sternly rolled forward and called out, “Excuse me, Representative Caul?”

The noticeably tall representative who has served our district since 2004 stopped, looked down at Jennifer and smiled.

“I don’t know if you remember me, but we’ve been down here before to advocate for the MI Choice Waiver Program that provides the services for me to continue living in my own home …” Rep. Caul was shaking his head and kindly cut Jennifer off.

“Of course I remember you,” he said with a smile.

Perhaps he says this to all his constituents but we’ve never felt someone, especially a politician, offer such a genuine confirmation that he knew who we were. They say pictures are worth a thousand words, and I’m wondering if the reason we have no picture of our meeting with Rep. Caul is because a thousand words wouldn’t be enough to describe this moment.

Knowing he had to get going, Jennifer told him we would leave some MI Choice information in his office. While he needed to get going, Rep. Caul stood there for a few more seconds to thank us for coming and for what we do to advocate for the needs of Michigan’s elderly and disabled citizens.

He shook our hands and then made it to his session a few minutes late, all because he took the time to listen to what we had to say.

We came home feeling so empowered and excited about the work we had done that day.

A powerful meeting: Jennifer with Sen. Cherry, who spoke about the power of advocacy

But it not only was for the work we had done to help ourselves, it was knowing our efforts also helped the people who weren’t able to be there to speak for themselves.

We always tell members of our MS self-help group they should be their own best advocates, and we encourage you to do the same.

Our fifth time we've met with Sen. Kahn to talk about the MI Choice Waiver Program

Find your passion and be a voice to make things better for yourself and for others like you. For example, if advocating for the needs of people living with M.S. is your passion, a great place to start is registering for the National MS Society’s Action Alert to receive news and information about M.S. advocacy news and legislative issues.

To borrow the line our respected fellow blogger Michael Gerber uses to conclude each of his posts at Perspective is Everything: “Participate. Make a difference. Live a life that matters.”

We wanted to share with everyone the link to an incredible multimedia package about us that is in the April 25 Morning Sun’s print and online editions.

The project started when Morning Sun photographer Ryan Evon approached us about following us around to develop a photo essay for the area daily newspaper. This package represents more than a year’s worth of his work, and we couldn’t be happier with how it turned out. We are grateful for the opportunity to share our story and increase MS awareness.

Click here to see the story, photos and videos that tell our story and how we try to help others to move forward. Please check it out and share it with others! Thanks for checking this out an for visiting us on our blog!

There Dan and I were, sitting at the table with two microphones, testifying before six Michigan Senators.

Dan was to my left and a gallery of about a hundred people sat behind us (thank God they were sitting behind us!) and listened to what we had to say.

The Region VII Area Agency on Aging had asked if we’d be willing to testify before a Michigan Senate Appropriation’s Subcommittee about our experiences with the MI Choice Medicaid Waiver Program. You know, that’s the one that provides the in-home care to help me with various activities of daily living, such as cooking, cleaning and grocery shopping, while Dan goes to work at Central Michigan University.

And when they asked, we jumped (okay not me) at the chance to share our story. We often say to our MS support group, “Be your own best advocate.” So when we were given this chance to speak to our legislators, we had to practice what we preach.

And it was WONDERFUL!

When all is said and done, we had the floor for about two minutes to tell how this program helps us to live our life together. And how incredible that these Senators, namely Sen. Roger Kahn and Sen. Deb Cherry, personally thanked us for coming, saying that it was nice to see the faces of the people MI Choice is helping.

 Thanks to Region VII that coordinates the caregivers who help me, many of our state legislators had already seen our faces and knew our story. The agency recently featured us on a poster displayed at a Michigan Legislative Luncheon in Lansing. And it wasn’t just a little poster. It was 2- by 3-foot displayed right there on the welcome table!

We hope that our story helps demonstrate to our State Senators and Representatives how this valuable program truly benefits so many people, as well as the state of Michigan.

With this, we’re even more excited about following up with our legislators at Older Michiganians Day in June, the same as we’ve done the past two years!

In other news …

• The current issue of Wartburg Magazine, the alumni magazine from Wartburg College (Dan’s alma mater), includes a well-written story about us and our efforts to inspire others and increase MS awareness. Check it out! 

• Speaking of current issues: The most recent post on Carnival of MS Bloggers features one of our stories! It’s really exciting to receive such recognition and be included in this online community of bloggers. Big THANKS to Carnival administrator Lisa Emrich for including us. She maintains a very active site that we’ve closely followed since we started a site of our own. 

From Herrad

 • And we were honored to receive a Big Red Bow Award from Herrad, administrator of the blog Access Denied–Living With Multiple Sclerosis. Check it out. Herrad is very sincere and we are so glad we discovered this very engaging and inspiring site!

After presenting eight of the 10 awards, Matt “Mojo” Lersch paused to ask officials for direction before moving onto the ninth.

The master of ceremonies at the National Multiple Sclerosis Society, Michigan Chapter’s 2009 Annual Meeting and Celebration of Volunteers and Top Fundraisers in Livonia showed the crowd of nearly 200 people the specific directions typed in the script he was following.

“This award is a secret,” whispered Mojo, who hosts the Rock ’N’ Roll Sideshow on Lansing’s Rock Station Q106 and was diagnosed with MS in December 2008. “Only a few people know who’s getting it.”

Mojo then was given the green light to present the 2009 MS Achievement Award, which expresses the NMSS’s appreciation of and to provide recognition to an individual with MS who has achieved outstanding success in life.

He described that while the award recipient doesn’t need to be a NMSS member or volunteer, this person must have made a significant impact in his or her profession and community.

But when Mojo began to read about the accomplishments of this year’s “secret” recipient, he led with, “This couple …” And we soon realized he was talking about us.

Our eyes pooled with tears and the reality quickly sank in: We were being named the 2009 MS Achievement Award recipients.

In following what has become a built-in emotional defense mechanism for us, we held each other’s hand and both started laughing to keep from crying. We were so surprised to be recognized for what we’ve done to increase awareness about MS, we didn’t even make it on stage to receive the award.

Were they really talking about us? It took NMSS Michigan Chapter President Elana Sullivan meeting us at the foot of the stage with the award for us to believe that this really happened.

It’s incredibly overwhelming and humbling to be recognized like this. After all, we never asked for this disease. We are just doing what we can to get the word out about MS and help people positively move forward when dealing with whatever challenges they face.

Through our volunteering at NMSS events, public speaking and maintaining this blog, we hope to increase awareness and public understanding of this chronic disease of the central nervous system that affects us and over 400,000 people nationwide, including 18,000 in Michigan.

This prestigious award is our proof that you never know what kind of impact your actions will make on others.

OK, so it’s been several weeks since we’ve checked in with you. Hmmm… Let’s see. Guess we’ve been busy:

• Settling into a routine with our CMU graduate class, “The Legal Search for Social Justice”

• Volunteering at our church – Immanuel Lutheran Church – with Jennifer serving as a Vacation Bible School teacher and as a temporary receptionist while our regular receptionist recovered from surgery, and Dan serving as a member of a special action planning process committee

• Cheering on our CMU Chippewa football team that is off to a 3-1 start, including a 29-27 upset over Big 10 interstate rival Michigan State University

• Celebrating Dan’s 37^th birthday with a weeklong trip to Walt Disney World

• Helping each other stay positive while dealing with the realities of life with multiple sclerosis  

We’ll write about these experiences in future blogs, but we first wanted to tell you about a couple of exciting events that we’ve been invited to participate in and share various stories and perspectives about our life together.

Here’s information about where you can catch us in Mount Pleasant this month:

CMU Disabilities Awareness Fair
Saturday, Oct. 17

Featuring vendors, speakers, children’s events and more, this fair will be the highlight of the university’s month-long effort to increase disability awareness.

• 10 a.m. to 3 p.m.

• Finch Fieldhouse, Central Michigan University

• Free and open to the public

• Our presentation is scheduled for 11 a.m.

Michigan Story Festival
Friday, Oct. 23, to Saturday, Oct. 24

This two-day event offers a complete showcase of the power of storytelling in all its art forms.

• 10 a.m. to 4 p.m. (Saturday)

• Various locations, Central Michigan University

• All Saturday events are free and open to the public

• Our presentation is scheduled for 10 a.m. Saturday in the Chamichian Recital Hall of CMU’s School of Music Building

I was pretty humbled when I read this e-mail I received from our friend (and Dan’s coworker) Barbara. She wrote:        

I’ve already made Dan listen to my recap, so now I’ll tell you: The ride was great! We had a rain delay Saturday morning, so it was a long day of riding. We pulled in to MSU at close to 5:30 p.m. But the weather on Sunday was perfect! Everything went well, all the riders and volunteers were so friendly and wonderful. There were about 750 riders. …

On the road between Linden and East Lansing

Barbara was telling me about her adventures in this year’s two-day Bike MS 150, Mid Michigan Great Lakes Breakaway on July 11. I was stuck by the irony that I can’t ride a bike and she’s riding a ridiculously long distance (yes, that was 150 miles ridden over two days!) to raise money to fight MS. And to think that she was doing this to support the fight against our disease.

Going into work at Central Michigan University the Monday morning following the bike ride, I told Barbara that Jennifer and I had been thinking about her the entire weekend. It all started when a violent crack of thunder woke us up at 6 in the morning, to which we thought, “And Barbara’s going for a 75-mile bike ride today?”

I anxiously asked her how everything went. As expected, Barbara was a champion. I stood there in her office doorway captivated by her stories about everything from the rain-delayed start to the rush of riding down the hills at nearly 30 miles per hour. But the image that sticks in my mind most is of Barbara, with thunder rumbling in the distance, loading her bike into her truck at 5 in the morning to make her way down to the start of the race in Linden some two hours away. All this just to ride 150 miles to fight MS. I, like Jennifer, am humbled by Barbara’s efforts.

Starting Day 2

We’re overwhelmed by the support, commitment and generosity Dan and I receive from our friends and family in dealing with this disease. It’s proof that we’re not facing this disease alone.

I desperately dropped to my knees in the silent hallway of the House Office Building in Lansing and told Jennifer to grab me the pen from her purse. There were no tables readily available to write on, so the floor would have to do. I had to jot a quick note to our State Representative Bill Caul.

Jennifer and me in Lansing.

It probably wasn’t the most official way to communicate with a State Representative, but I wanted him to know that we had stopped in to see him as part of the second annual Older Michiganians Day on June 24. This annual rally on the steps of the State Capitol gave Jennifer, me and hundreds of others the opportunity to meet with our elected officials and advocate on issues and programs that affect older Michigan residents.

You’re right. Jennifer and I are 34 and 36 years old, respectively, and hardly fit the profile of “older” Michiganians. But many of the concerns of this demographic, such as in-home care and respite programs for caregivers, are the realities of daily life for this younger Michiganian couple living with multiple sclerosis. And so this year, much like last year, we went and advocated for older Michiganians by advocating for ourselves when we met with our legislators and their legislative aides.

Our personal primary focus was to advocate for continued and increased funding for the MI Choice Medicaid Waiver Program. It truly is this program that makes our life as a “normal” married couple possible. Through this program Jennifer receives the in-home care she needs to help her with the activities of daily living such as cooking, cleaning, grocery shopping, and (most importantly) safely transferring to go to the bathroom. This, in turn, enables me to continue working at Central Michigan University and know that my wife is receiving the care she needs.

Jennifer always explains to our legislators that she very easily could qualify to live in a nursing home, but this program makes it possible for her to continue living in her own home and contributing to the community. And this program saves the state money: While it costs the state $150 a day for a person to live in a nursing home, it costs only $50 to provide the care that helps a person stay in their own home. In fact, in her 2010 Budget Letter Michigan Gov. Jennifer Granholm stated, “In the last seven years, we have saved more than $178 million by expanding community-based service options for seniors and the disabled.”

Jennifer meets Lt. Gov. Cherry.

While last year we met face-to-face with Rep. Caul and our State Senator Alan Cropsey, emergency sessions to discuss and debate K-12 funding prevented us from actually meeting with them at this year’s Older Michiganians Day. But we did get to meet at length with Sen. Cropsey’s legislative aide and Jennifer even got to meet Lt. Gov. John Cherry and put in a plug for the MI Choice Medicaid Waiver.

Sen. Caul also has on record a letter from two constituents thanking him for his service and asking him for his help in supporting this important state program.

Today the second of a two-part series featuring an extensive Q and A with Jennifer and me appeared in the Monticello Express, my hometown newspaper. Certainly, Part II has different information that Part I, but I still feel the same about it as I did last week (see my previous post)!

I guess what’s different this time around is that in addition to being humbled by it all, there’s a lot of excitement (or is it nervousness?) surrounding our being featured in the paper again this week: Jennifer and my presentation, which was what motivated Express Editor Steve Lerch to talk with us in the first place, is happening in less than two days! 1:30 p.m. Saturday, April 11, to be exact. Let’s see … a two-part interview in the Express over the last two weeks, presentation flyers being posted all around town, and, (how incredible is this?) copies of the flyers getting inserted in the bulletins of the church where I grew up? No pressure there!

The reality is we couldn’t be more excited about the opportunity to share our story in Monticello to increase awareness about Multiple Sclerosis and inspire others who are dealing and living with the challenges of this and other illnesses. It seems like we’ve already started to do this, and we haven’t spoken a word about it there at all yet! How humbling is that?

Here’s Part II: