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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.

My days are numbered. Medical experts essentially tell me this all the time.

I heard it most recently when I attended an MS conference last weekend hosted by the University of Michigan Hospital in Ann Arbor.

In not so many words, they said that most people with Multiple Sclerosis live with the relapsing-remitting form of the disease for so long and eventually transition to the secondary-progressive form after they’ve had the disease for 10 years.

I hate it when I go to these kinds of things because they often provide a subtle yet very in-my-face reminder that I truly have a chronic, progressive disease. I don’t blame them for their pessimistic forecasts because I realize the medical facts don’t lie.

With a decade under my belt, I guess I’m living on borrowed time.

While I don’t consciously think about it, I wonder if I unconsciously realize this with every step I take. Every stair I climb. Every race I run. Every shoe I tie. Every workday I complete. Every book I read. Every sentence I write.

Everything I do.

Such a reality check has the potential to throw me off my game and into a woe-is-me abyss that could consume my life. But I won’t let this happen. Guided by the charge of Coach Jimmy Valvano who said, “Don’t give up. Don’t ever give up.”

With a decade under my belt I know I’m living on, regardless what form of Multiple Sclerosis I have.

I consciously realize this with every challenge I face. Every obstacle I overcome. Every frustration I feel. Every battle I lose. Every battle I win. Every moment I live to its fullest.

Every day, I embrace.

Sounds like such a stupid question. Me, the one living with Multiple Sclerosis for the last nearly 13 years, but almost every morning I wake up thinking, “Just give me a second. I’ll jump out of bed and get moving.” Silly right? But, my dreams play a small part in this deluded thought. Stupid dreams! I still walk in them, how deceptive and unfair is that?

Since I met Dan, I have never walked. But in my dreams, we often walk together into crazy, nonsensical adventure all of the time – hey, dreams don’t have to, and trust me, mine don’t, make sense. And I guess it’s good that I still walk in them because it reminds me what I’m fighting for. I believe, I HAVE to believe, I will walk again!

But am I really disabled?

Dan and Me - carefully cropped, as usual

You’d think, the wheelchair or the reality I can no longer roll over in bed, or get to toilet without help might tell me. But, un-uh. Still don’t see myself that way. As for those little blue wheelchair signs designating handicapped parking spots and restrooms, those are just signs. That’s not me!

This lack of acceptance, i.e. denial, might explain my constant frustration and frequent tearful outbursts when no one is looking. But those are mine to live with and deal with, and pity is certainly not acceptable or being asked for.

But again I ask, am I really disabled?

Recently, I was asked by the office of Student Disability Services to tell the Facilities Management staff at Central Michigan University how they could improve the handicap accessibility of their buildings. Guess that should’ve been a clue, but truly, it was the 2 women in wheelchairs I met that night that made me doubt the genuineness of my disability.

They were also providing the FM staff valuable feedback on building improvements. Only they were sharing stories of cruising their power chairs around campus, or through town, the daily difficulties of riding public transportation, or having to replace worn out wheels.

I couldn’t relate. After all, I ride in my van and can’t imagine driving my chair enough to wear out my wheel’s tread. Really, I’m only kind of disabled.

But when they started talking about getting stuck in the snow or having slippery wheels from said snow and about hard to open power assist doors. I started to relate.

Then the topic turned to the best handicap bathrooms on campus. And when we all knowingly exclaimed, “Library. Definitely the library.” It started to sink in. I was with my peers.

Sure my MS support group is full of people who understand this disease, but none of our regulars use a wheelchair. And Dan, he provides tremendous support and understanding. But it was in that room; with those women in wheelchairs that it began to be okay.

Yes, I really am disabled. And after not walking for the past 8 years, you are probably thinking, “Well duh! Finally.” But for the first time, I felt comfortable enough to say, “I am disabled.” (of course with the caveat, ”I make disabled look good!”)

And maybe now, I’ll even be okay with photos of me in my chair. Um … probably not. Call me vain, but I’m thinking I’ll still probably crop it out.

Fun … that’s it. Really! Having fun makes my MS more tolerable, and when I’m having lots and lots of fun, I sometimes even forget that I’m living with this disease. Yes, my daily injectable (which has more than doubled in price in the 10 years since I started taking it!) works to slow the progression and lessen the severity of my multiple sclerosis, but it’s the fun and the people that I’m having fun with that motivate me to wake up every morning and keep fighting and thus is the best medicine!

There is one bad thing about all this fun:  having too much of it really wipes me out. While I’d rather blame the MS for slowing me down, I’m realizing that I don’t recover like I used to. Certainly not like when I was in my 20s and didn’t have this chronic illness. And now as I recover, I end up putting some important things–like this blog–on the back burner, and I apologize for that.

So without further ado, here is a glimpse at what has kept me (and Dan) busy:

Hey Boo-Boo 

We went to a great picnic, and there is nothing better than being surrounded by friends who just get you. Friends from my old MS support group in Flint were getting together. A picnic was planned, but our attendance was spontaneous. Talking with two of the group’s members earlier that afternoon, they mentioned their plans and invited us to join them at that evening’s picnic. There was no way were would miss it! And even though I have not been to that group in the four years since I got married, I wanted to enjoy a nice summer evening with them and my husband. This picnic was so awesome because while it was the disease that brought us together, it was barely mentioned. This picnic was about good food, good friends and good, oops I mean, GREAT times.

Play Ball!

No, not me silly. Watch ball is more accurate. Dan, my dad and Jim (my caregiver) and his family went for a fun time at Dow Diamond in Midland. We saw a Great Lakes Loons baseball game. The Loons won! We ate too much–hot dogs, nachos, cotton candy, and of course, for me the required dill pickle–you know, the usual baseball essentials. Bonus, the weather provided us with a beautiful night! The recently built stadium is completely handicap accessible, right down to a family restroom. This essential accommodation makes my comfort and enjoyment an almost certainty. And the cherry on top of this all-American sundae? After trying at the last few games we attended,I finally got to meet the team mascot,Lou E. Loon. What a perfect fun evening!

A man on a mission

After joining our team at this year’s Walk MS a few months ago, Jake (the wonderful husband of my close college friend Heather) decided that I was going to be able to get into their house. See, we had been to their house last summer for a party following the Crim race in Flint, but I couldn’t get into their house because it had a series of steps. 

Jake wanted to ensure that I could see the inside of their house when he and Heather hosted the engagement party for our dear friends, Jen and Adam, on June 27. So he did some research to see what was available. And, after asking me the width of my power wheelchair, he was fairly confident that he had found a solution: His friend, Andy, had access to a ramp from a standard moving truck. That, along with a custom ramp Jake built, made it possible for me to get into their house, which was very lovely, by the way And once in their home I was able to use its bathroom, making it the first residential bathroom, other than ours and my parents that I’ve been able to use in the seven years since I lost the ability to walk. And because of this, we could stay at the party for as long as we (and for a change, not my bladder) wanted. And much fun was had!! Thanks again Jake & Andy.

Dan & I deal with MS every second of our lives, so isn’t it great when we can find fun escapes? We’re excited about the St. Louis Blues Festival over the Fourth of July,  going to another Loons game, the annual Mt. Pleasant MS group pizza party, another Crim race and post-race soiree, and whatever fun opportunities come our way. 

Is it possible to have too much fun? Maybe, but we’ll keep having as much as we can handle. 

** Finally it’s getting close. Our Acorda national contest winning podcast should be up very soon! In the meantime, check out the first of the three winners: Mark’s story is online now.

And go have a little fun of your own!!

Jennifer

tuesday morning, i slayed my first dragon.

to understand what i mean by this i need to share with you some of my background: right around may 24 i will begrudgingly celebrate a bitter anniversary of sorts. it will mark seven years since i last walked. you’d think since it has been such a long time, phrases like “i’m going to run to the store” or “let’s go for a walk around the neighborhood” would have slowly worked their way out of my lexicon. but no, i say phrases like these just about every day. that’s just me … a little blind to my disability maybe. or just not hypersensitive to it. these little untruths are not malicious. they are just, well, part of my charm.

keeping that in mind, i’ll explain that the dead dragon from tuesday is because i went swimming. just as dragons insight fear in some, swimming was my fear. so on tuesday, i stared down that beast and i went swimming.

“swimming?” you ask. well, you bet ‘cha!

all smiles after swimming

okay to me swimming is merely me standing in the swimming pool. it is not the breaststroke or the butterfly. for me right now, swimming has become a humungous process.

a process that requires the help of three people. well, four if you count the pool lifeguard (i.e. the lift operator). gone are the days of slipping on my suit and diving right in.

the process starts when i ask my husband, dan, to help me put on my suit. we carefully and momentarily stand to adjust it. then he helps me put on a sweatshirt, which serves as a cover-up, and finally some shoes. then, dan passes me off to my caregivers, ellie & jim. who drive me to the very accessible pool facility in central michigan university’s student activity center. ellie escorts me to the locker room. where she takes off my cover-up and shoes, hands me my towel and i’m one step closer to taking my swim. oops! see what i mean? i neither step nor swim. again, part of my charm :-) 

once i’m on the pool deck, jim transfers me from my wheelchair to the university’s hoyer lift-type thing. and now the lifeguard pushes me, buckled into my seat, close to the water. swimming is so close! he slowly lowers me down, i can smell the chlorine and feel the chilly water on my toes. brrr … finally, i’m submerged up to my chest. time to unbuckle me. oh the water, how refreshing!!

jim floats me over to the stairs, i’ll use the handles to stand. sorry, no miraculous stair climbing in my future. just standing.

okay, wait. I’m standing! how amazing is that? because of the water, i’m buoyant and seemingly light as a feather. and for the next 15 minutes, i stand. yes, there are occasional breaks where i just float. for me to stand, jim and ellie have to push on my knees to lock them for stability. but once my knees are locked, they let me go and i’m standing all by myself.

jim, me and ellie

as i start to get tired and remember that i don’t want to overdo it, i ask jim and ellie to strap me back into the chair, which lifts me up and out of the water (i quietly make a promise to myself that i will swim again this summer). jim transfers me back into my wheelchair, ellie towels me off and we rush home so i can finally go to the bathroom! unfortunately the pool is accessible, but the locker room not so much.

so i went swimming, which is one dragon down. now i have two more i need to overcome. and i’m looking forward to telling you all about them when i finally slay those dragons.

did you shower today? kind of personal, yes i know. but did you take a shower today? you probably did. it’s kind of like breathing. you just do it and don’t really think about it.

that is until you can’t do it.

for the first six years that i knew dan, we would make the drive from michigan to iowa to celebrate easter with his family. we’d stay three or four days at a hotel conveniently located in town close to dan’s parents house. it was a cute place - clean, a pool, even free pop tarts at breakfast and it was pretty accessible.

well , at least for three or four days. but by day five, despite my efforts to wash up in the bathroom sink or go in town to have my hair washed and coiffed, i needed to shower.

only problem was that this cute little hotel did not have a roll-in shower, which is a necessity for me because i can no longer stand .  so it’s absence meant that we had to keep our trip short. just a quick visit. and fortunately everyone understood. we were pretty content but our visit always went by way too fast. 

however, this year was different. we wanted to and needed to stay almost a full week. that meant that we would have to stay at a different hotel. it’s not like i could forego a shower for a whole week! we had to find a hotel in a bigger city than monticello. one with a roll-in shower. one twenty-five or thirty minutes from his parents. bye bye pool, pop tarts and a convenient location. 

or so i thought. 

but dan had a kind of crazy idea “see jennifer, there’s this camp not very far away from my parents house. it’s a camp that would be accessible. no, really accessible…roll-in shower accessible.”

heck, if there was any place in town where i could take a shower, a real shower, i’d be game. to be honest i was a little skeptical but i was game. so dan made a few phone calls. then we checked out the camp’s website and finally, we packed our bags and off to a camp in iowa we went.

camp courageous was no regular camp. it was amazing! beautiful scenery, friendly staff, great rooms and most important, totally equipped with a roll-in shower. in fact, there were six such showers in our cabin. my cup runeth over with cleanliness!

and to be exact, april 11 was the day of my first real shower in iowa for over six years. which is why it was such a glorious day!

So, as Jennifer and I drove back from Monticello, Iowa, earlier this week, we filled the nine hours in the van talking about all the things we could write about to follow up on our trip:

• The incredible accommodations and hospitality we received at Camp Courageous

• Our featured presentation hosted by the Ross and Elizabeth Baty Monticello Public Library

• The unexpected invitation to speak at the Monticello Rotary Club meeting

• Why we consider this our best trip back to my hometown

Stay tuned to our Web site, as we will foll0w up with these topics. But first, one topic we didn’t address – because we never saw it coming – was the follow-up column written by Steve Lerch, editor of the Monticello Express. Steve had featured us in an a two-part Q-and-A in the weeks leading up to our scheduled presentation. Sure, he attended the event and took several pictures, but I truly thought at most we’d be featured in a standalone photo with an extended caption describing our program.

Instead, I wanted to share with you what Steve wrote, and I still am humbled to hear what he thought about us, our presentation, and our life with MS:

Digmanns show amazing strength in battle with MS

Mindless Banter By Steven Lerch Express Editor

It’s hard to find a team anywhere as strong, determined and focused as the one in the marriage of Dan and Jennifer Digmann.

The couple held their public discussion to promote awareness for multiple sclerosis Saturday, April 11 at the renaissance center here in Monticello.

Dan and Jennifer are living with multiple sclerosis and have been doing so for about a decade. Dan is a graduate from the Monticello High School. He was even the sports editor for the Anamosa Journal Eureka for a short stint in 1995.

It was there at the AJE that I first met Dan. My mother was working there at the time. Back in those days I would stop by the newspaper to skulk about and see what that crazy world of newspapers was all about– that and to get my mom to buy me a Pepsi and Snickers Bar. Hey, I was 13 and my priorities were clear. These visits became known as “Lerch Alert.” Well, according to Dan anyway.

Years later I found myself having conversations with Dan’s mother Nancy at the library. She informed me that Dan was on his way back to the community to give a discussion about he and his wife’s fight with MS.

Fast forward to Saturday at the renaissance center where more than 30 area residents were in attendance. My mom and little sister Kelly even showed up. Enter Dan and Jennifer Digmann stage left.

Jennifer is now confined to a motorized wheelchair due to her MS. She opened the discussion by stating that she and Dan, her husband of four years, serve as an example of the differences of how MS affects people– some are confined to a wheelchair while others, like Dan, battle numbness in their hands and feet but are still able to walk.

After the facts and figures were discussed, a charming story about how the couple came to be Mr. and Mrs. was given. And then it was amazingly clear that these two were born for each other as they flirted a bit in between questions.

They are living with MS, not dying they said and doing the best they can. Dan, with the assistance of a certified caregiver, works hard to ensure that Jennifer wants for nothing. He works 40 hours a week as Assistant Director of Public Relations/editorial at Central Michigan University in Mount Pleasant, Mich., where they reside.

Dan has even taken to the streets as a budding 5k runner while Jennifer participates in MS awareness walks. She said that she always has to tell Dan to pick up his feet when he runs– occasionally, Dan’s left leg drags a bit due to the MS.

They are their strongest support system. Jennifer lifts Dan’s spirits when he’s exhausted and cranky from a long day living with MS. Dan lifts Jennifer, literally, in and out of her wheelchair when she needs to use the restroom or to go to bed.

Their story is inspirational to everyone. My hope is that they return to Monticello again next year and that more than 100 area residents show up in support of the fight against multiple sclerosis. Maybe it could become an annual event, which could also serve as my opportunity to use the term “Digmann alert.”

So, Jennifer and I are sitting here still reeling from less than four hours sleep last night. Perhaps it’s a blues hangover or it’s just our age telling us that we no longer can stay out late and get to bed after 2 a.m.

Either way, we did something last night that we’ve been talking about ever since we started listening to the Juke Joint with “The Duke of Juke” Robert Barclay on CMU Public Radio: We finally saw Ann Arbor-based rockin’ blues man Laith Al-Saadi at The Gem Theater in St. Louis, Michigan.

We first heard Laith’s infectious groove, smooth vocals and powerful rock- and blues-driven guitar on the Juke Joint while we were stretching Jennifer’s legs one Sunday evening. His song “Turn It Around” from his debut album, “Long Time Coming,” was like nothing we had ever heard before. We bought the disc and we’ve been hooked ever since.

Laith is a favorite of the blues crowd who frequent The Gem Theater, so he usually appears there several times each year. But, because it was a smaller venue, we figured it wasn’t going to be handicapped accessible and didn’t take the time to investigate whether Jennifer could get into the theater with her powerchair.

Too bad we didn’t investigate sooner.

Our lucky day: We met Laith after his 4-hour set Saturday night at The Gem Theater.

For whatever reason–perhaps the sunny weather or hearing songs off Laith’s latest release, “In the Round,”–we went for broke. We were in the area and drove by The Gem Theater to make sure it had no steps to enter the downtown building. After seeing there was no step up into the theater, we called about tickets.

We went into this figuring The Gem would not have a suitable accessible bathroom and, when Jennifer needed to use the restroom we likely would have to leave early or use the accessible restroom in the nearby McDonalds.

It was our lucky day because The Gem restroom was first class. In fact, owner Minard Shattuck came up to us shortly after we arrived to let us know where the accessible restroom was located. Mindard and his wife, Jen, did everything they could to make this a comfortable and enjoyable experience for us (Thanks guys).

And it was a great thing that the bathroom was perfect for us to use. Laith tore it up singing and jamming with his drummer and bass player for nearly four hours. That’s right: FOUR HOURS! What an amazing show (Thanks guys). 

We’re already planning our next trip to The Gem Theater to enjoy another great blues show and have marked our calendar for the next time Laith will perform there. We encourage you to do the same!