MS Connection Blog


The Long Walk to the Coffee Shop

Blog Summary

My rollator walker is my freedom. There’s no question about that. It allows me to observe the world while I’m walking instead of constantly looking down to avoid pebbles or cracks that might (and do) send me reeling.

Liberating as it is, the rollator has its drawbacks. It’s big and bulky, and it’s forever a challenge to figure out where to stow the dang thing when I’m at a concert or in a restaurant. And when I’m walking down the sidewalk, I’m often either parting crowds or zig-zagging to get out of people’s way...

Don't Shed on Me!

Blog Summary

The students in my disability law class were expecting to have a guest speaker that evening. But they were surprised and delighted when not only did two guests enter the classroom, one of them was of the canine persuasion.   I believe the best way to teach the law is for students to see it in action. And that evening, they learned about an organization called “Canine Companions for Independence,” a nonprofit group that trains dogs to assist people with disabilities. As the students observed, Eliza the service dog, was able to help her owner, a wheelchair user, in a variety of ways. Among other things, she retrieved coins and other small objects, opened the door and even pulled her owner’s wheelchair...

Wheelchair Barbie

Blog Summary

Okay, I’ll admit it–on some level I wanted to look like Barbie. Even though I intellectually knew she wasn’t real and didn’t resemble any person I knew, that skinny piece of painted plastic still had the power to make me feel woefully inferior. There was something about her silent perfection that could not help but scream “pretty,” “hip” and “athletic” to me, especially when she was dressed up to go hiking or roller-blading with the ever-hunky Ken. Of course, every child goes through something like this. And because I did not develop MS until well into adulthood, I at least did not have the additional burden of incorporating a cane, a walker or a wheelchair into my developing self-image. That would only have made things more difficult and infinitely more confusing...

Sometimes “Political Correctness” Just Means Seeing People for Who They Are

Blog Summary

My neighbor and I have been friends for 30 years. I have no doubt that she holds me to a high regard, as I do her. But when she asked me if I had a hard time being “crippled,” I literally felt a chill run through my body.    I have MS, and I use a cane or walker to get around. In my mind, that does not make me “crippled.” But even if I was unable to walk at all without a mobility device, I would still feel uncomfortable being referred to by that term. It conjures up an image of helplessness that is not only inaccurate, but robs me of my dignity...

Myths and Realities of the ADA

Blog Summary

The Internet is indeed a mixed blessing. The good news is that there’s an amazing amount of information out there. The bad news is that there’s an amazing amount of information out there. As an individual with multiple sclerosis, I have of course surfed the web, looking for answers. Once I learned how to separate the truthful and credible information from the wacky and even dangerous stuff, I learned a great deal...

Walking the Walk

Blog Summary

A few months ago, I was sitting in my car in a parking lot, and I saw a car pull into a disabled parking place. No one hung a disability placard on the rearview mirror, and I saw a young man jump out and head for the store.   “Hey, that’s a disabled parking place,” I yelled at him...  

Connection works: The disability civil rights movement

Blog Summary

I love the “connection” theme for this year's MS awareness campaign. As scientists are discovering the amazing process by which nerves start to form new connections (remyelination), we in the MS community are also finding new and creative ways of doing the same thing. This month, we are broadening and strengthening connections within our neighborhoods and throughout the world. Connections are often created because there is a common need, combined with a realization that this need can only be met by a group effort. In many cases, the resulting connection stays alive throughout generations and becomes a part of history. Such was the case with a movement that many people still don’t know about: the disability civil rights movement.People with disabilities used to be even more isolated than we are today. Not only were we overlooked in the civil rights laws of the 1960's, but in some cases we underwent forced sterilization and mandatory institutionalization. There was also a general assumption that if we were unable to use a sidewalk or get into a building to apply for a job, it was the unfortunate hand we had been dealt and it was our responsibility to accept and cope with it.Things changed when people with disabilities – all kinds of disabilities – worked together to change peoples’ minds and eventually change the law. Ed Roberts, the “father of the disability rights movement,” used the press in 1967 to persuade University of California, Berkeley  that he could attend classes in an iron lung. In 1977, disability activists organized a five-week sit-in at a government building in San Francisco, until the Carter administration finally implemented regulations to make public buildings accessible. And in 1988, hundreds of students and alumni at Gallaudet University for the Deaf effectively closed down the campus until a deaf president was hired.  It was these types of protests that eventually led to George H. W. Bush signing the Americans with Disabilities Act (ADA) into law in 1990. In fact, the Society just honored a congressionalchampion of the ADA at the annual Public Policy Conference. Although we have a long ways to go before we have finally achieved a society free of disability discrimination, we are in debt to – and forever connected with – these heroes.

From my side of the cane

Blog Summary

Last week, I was flying back to Oregon after a family visit. At the airport, they started herding passengers with the familiar announcement: “We’re now beginning early boarding for those who have small children or who need a little extra time… ” I used to ignore it and board with everyone else, until I realized that this not only made things more difficult for me, but for others, as well. So I grabbed my cane and started walking towards the plane.I soon became aware of another passenger moving in quickly behind me. As is my usual practice, I stepped aside and said, “Go ahead.” But instead, the passenger loudly exclaimed, “No, my wife walks just as slowly as you do. You take all the time you need!”  I said, “Really, please go ahead of me,” and he replied, “No, you’re doing just fine!” I tried one last time, as I didn’t want to rush or be pushed, telling him, “I would prefer it.” He bellowed, “No! My wife walks just as slowly as you do. You’re doing great – and there are people coming up behind us.” I shot back, “And do you tell your wife whether or not she can ask people to walk ahead of her?”  Needless to say, our conversation abruptly ended at that point and we (a group now) all somewhat awkwardly made our way towards the plane.By the time I was in my seat, I was decidedly “exercised.” I alternated between seething about what a jerk he had been and berating myself for having snapped at him in the first place. After all, he had meant well … hadn’t he?What I had done was give him power he wouldn’t have had otherwise, which made me feel worse than I would have felt, otherwise. I suppose I could have educated him a little about how things look from my side of the cane, and maybe he’d treat the next person like me in a more respectful manner. It’s just as likely, however, that he wrote me off as being hostile and ungrateful. (And as for what his wife might have thought of all this, please forgive me if I refuse to go there!) Psychologists have long realized that the concept of “feeling better by venting” is often a fallacy. Letting one’s emotions loose may actually have a reinforcing instead of releasing effect. In this vein, I am struck by the difference between how I felt at the airport and how I felt when I took legal action after my employer had denied my request for reasonable accommodation. Both instances caused me some agitation at first, but the difference is that with the latter, I felt completely at peace afterward. It reminds me that everyone - particularly those of us who must conserve our energy – are generally better off picking and choosing our “cane mutinies.”