Comments About My Disability Test My Tolerance

For some people multiple sclerosis is an invisible disease, but not for me. I can’t hide it, because I have physical disability. I use several mobility aids including a cane, a device for foot drop, and a mobility scooter. I’m fairly noticeable I suppose. And I get a lot of unwanted attention in the form of comments, stares, and pointing fingers to remind me all the time.

I know that human beings are visual creatures. We are obsessed with appearances. So when people see me they first see features like my hair (because I’ve got so much of it), my face, and my disability, before my other attributes. But what empowers complete strangers to comment on my disability escapes me. I’m really not shocked by it anymore. I expect it. Lately though, I’m losing my tolerance. I don’t think a week goes by when I’m not accosted by some idiot who thinks they are clever.

I attended a work seminar last week. I used my scooter since it took place in a large building surrounded by a large parking lot. Inside, the seminar was held in a big open room with rows of chairs. I parked my scooter at the end of a row and sat down in a chair. Some guy squeezed by my scooter and me, sat down, and asked, “How did you get that chair out of Wal-Mart?”

“Huh?” I replied uncertain if I had heard him right. And then he repeated himself. I then pointed to my scooter and asked him if that was what he was referring to.

“Yes,” he replied. “Not that funny I guess.” I told him I’d add that one to my list. And he responded, “I’m sure you hear a lot.”

So why then? Why does this man, a stranger, make this comment while in the back of his mind he knows it’s off-color? He knows I field far too many comments just like this one.

Notice how the use of a camel in this photo draws attention away from my cane.  Unfortunately, not a viable solution for every day.

Notice how the use of a camel in this photo draws attention away from my cane. Unfortunately, not a viable solution for every day.

A couple months ago I had a work meeting away from my office. Again, I was using my scooter. In attendance were some people I have worked with before, and some were new faces. After the meeting, I said goodbye to the other attendees and exchanged a couple business cards. Then after I said goodbye to a person I had never met before he said, “Nice scoot-scoot.”

“Yeah,” I mumbled, now uncomfortable feeling my disability had been trivialized.

I know this comment wasn’t meant to cause harm, but it did. While it perhaps was meant to be playful, it was demeaning. And this is what I deal with all the time. I have had experiences like this for nearly 10 years now. It started well before the scooter when I first began having gait issues and I was asked if I had a “hitch in my giddy up” or if my feet hurt because of the appearance of my stride. It continued when I started using a cane, when instead of the cane being a visual explanation, I was asked if I was “gimpy”.

If all the people who’ve said things to me over the years could just live in my skin for a bit. See just how thick it has to be to live my life. See what I put up with. See how it feels. I struggle to not let these experiences have a negative impact on my life. I try to find humor and laugh at the audacity of these people, but it gets old. Plain and simple. People have to think about what they are saying to me. They have to be accountable and think about what is coming out of their mouths. Most of the time I don’t respond to the things people say. But am I doing them, or myself, any justice by letting their words go unchallenged?

I hope for a day when these insensitive comments end. Based on my experiences, it can be difficult for me to believe it will ever stop. But I had an encounter that does give me some hope. It took place recently when a four-year old girl engaged me in conversation, examined my cane, and said, “I like your stick.” What a brilliant little girl.

Multiple Sclerosis and the Job Interview

Recently I went on a job interview and I thought it would be good to share my experience. For people with a disability such as Multiple Sclerosis, a job interview can be intimidating. For someone like me, who has visible physical disability, it can provoke feelings of anxiety and fear.

In the case of my most recent interview, I felt anxiety about how others would judge me based on my disability status. Despite all the accepting people in the world, I admit I always assume the worst. I’m working on changing this outlook, but it’s hard. Thankfully my experiences in life favor this change. My interview went really well and once the questions started, my only focus was on my professional experience and knowledge. This didn’t happen by chance though. I took the time to prepare for my interview. Being prepared kept me focused on my abilities, knowledge, and experience.

There are a few things I’ve found helpful when it comes to a job interview. Here they are:

Know your rights. Be informed as to what an interviewer can and cannot ask you about your condition. The National Multiple Sclerosis Society offers a great summary of illegal and legal interview questions.

Be prepared for your interview. Study commonly asked interview questions. Potential questions can be found through a simple Internet search. Practice your answers out loud. Learn about the organization. Check out their website and read up on what they do. Don’t forget to prepare a list of questions for your interviewers as well.

Although it’s difficult not to worry about how you’ll be perceived by others, preparing for the interview can help you focus on your abilities, not your disability. And in case you are wondering about the outcome of my interview; I got the job!

Things I’ve Done Since I was Diagnosed with Multiple Sclerosis

I started making a list of some things I’ve done since I was diagnosed with Multiple Sclerosis. When I showed the list to my husband and told him I wanted to post it on my blog he said, these are cool things but make sure it doesn’t seem like you are trying to brag. Then I was worried; of course that wasn’t my intent.

So I thought about why I was making the list. I realized that I made it because I’m proud of myself. After I was diagnosed with MS I spent two years struggling with depression while trying to come to terms with my situation. It was the most difficult time in my life. I’m so grateful that I made it out of that dark place.

The purpose of this list is two-fold. For me, because I can be my harshest critic. I sometimes feel like I should be able to do anything and it’s hard at times to cope with my limitations. This list shows me that I’ve done some awesome things despite living with MS. The second is for others. I want everyone with MS to know that they can live a happy and fulfilling life. I want others to stay out of the dark place and live with me in the light.

So here goes. Since I was diagnosed with MS I’ve…

Graduated from college three times
Lived on my own
Got a dog
Found several jobs
Received a promotion at work
Swam in the ocean
Got married
Traveled to other countries
Adopted two cats
Rode in a helicopter
Visited four national parks
Traveled alone for business and pleasure
Went camping
Moved to two different states
Bought a house
Saw a humpback whale in Mexico
Jumped off a boat into a lake
Watched the sun rise and set in the Grand Canyon
(This spot reserved for the future)

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Disclosing MS

In 1998 I was diagnosed with relapsing-remitting Multiple Sclerosis (RRMS). I went about six years with fairly mild symptoms including periodic numbness and tingling, a few bouts of optic neuritis in each eye, and MS fatigue. I was fairly convinced that this would be the course of my MS, but then things changed. In 2004 as I was about to graduate from college and start my first professional full-time job new symptoms started to emerge.

I began to have to urinate often and with urgency. There was no waiting or holding it. When I had to go, I had to go. This really came out of nowhere. I also began to notice a strange change in my gait. What years later was diagnosed as foot drop started as an uneasy feeling in the stability of my right ankle. On several occasions my ankle buckled in and I fell. The first time I was alone, the second time I was in front of several of my college mates. I blamed it on the pavement and high heeled shoes I was wearing.

Until this time, I had invisible MS. No one could tell anything was wrong by looking at me. I was a perfectly healthy person despite the MS. But slowly, my disease began to announce itself to the world. For years it had been mine to tell. I chose when I disclosed that I had MS to others. Now, it began to show and it became harder to keep it to myself.

I went on for about a year this way. Working full-time, pretending nothing was wrong. Avoiding situations where I had to walk long distances, dehydrating myself when I knew I’d be away from the bathroom for longer than one hour. Then my breaking point came because for the first time, MS affected my ability to do my job.

At the time part of my job required me to be out on residential construction sites. I often had to walk on uneven ground. One day while out at a job site my ankle buckled and I fell down. No one was around to see me. I got up, dusted the dirt off my pants, and went back to work. Over the next month I began to have anxiety about going to work. I made excuses for why I couldn’t go to job sites. I avoided it as much as I could. One day I called my best friend on my way to work crying hysterically about how much I hated it. At this point  something had to change.

I always think of this as the point in my life when I went public with having Multiple Sclerosis. My friends and family knew, I told other people when I felt safe, but I hid MS as much as I could from anyone outside my circle. It was on a need to know basis. I scheduled a meeting with the human resources director at my work. As I cried in her office, I told her that I had MS and was afraid I wouldn’t be able to do my job because of it. I don’t recommend the crying, but I do recommend disclosure of MS when it will get you the help you need. I cried because I truly felt terrified that having MS might take away something I worked so hard for; my career.

After my meeting, I felt the greatest relief. I felt like I didn’t have to hide or make excuses for myself. She gave me paperwork for the Family and Medical Leave Act (FMLA).  I had to get my doctor to fill it out and then I was placed on FMLA. I didn’t take time off work at the time, but my employer used it as a tool to protect me and my job. This documented my condition so that when I did use practically all my sick time at the doctor and when I finally did need to have some extended time off because of MS complications, my job was protected. Additionally they accommodated me by eliminating the job site work from my duties. I had plenty to do in the office. Eventually they moved the responsibility to another department’s employees whose entire days were spent out at the job sites already.

Disclosing that you have Multiple Sclerosis is a decision not to be taken lightly. The National MS Society has a wealth of information on disclosing your MS that can help you make decisions and inform you of your legal rights. I have never disclosed during a job interview, or to strangers that make stupid comments to me. But in this case it helped me keep my job, relieve anxiety, and feel more comfortable with disclosing MS in social situations. I wanted to share my story because it was a positive, although emotional, experience.