Yes…It Counts

I think we can all agree that this Election season has seemed much longer than most. While tomorrow may bring an end to the commercials, debates, and political satire on late night TV (for at least 3 years), it is imperative to remember how important this actually is. Voting has been around officially in the US since 1789 when a then-small number of eligible individuals voted in our first President, George Washington, and his right hand men. Since then we’ve sworn in 43 people to serve in the capacity of President and tomorrow we’ll elect number 44.

While it may feel like it at times, we aren’t helpless in what happens; and while not everyone may be satisfied with the outcome tomorrow, being part of the conversation is up to each and every one of us. Voting is our shot, an opportunity for us all to have a say in who governs our cities, counties, states, and country. While everyone has their own reason for voting for their choice, individuals living with disabilities or chronic illnesses have a vested interest in what comes next and whom our elected officials are. These officials will be responsible for upholding our benefit system, enacting our budgets for public transportation, and charged with making decisions on expanding or ending needed services. They’ll be some of the loudest voices for where research dollars go and be in the room where it happens, as conversations determine the fate of programs and plans that impact our healthcare system.

vote3“Where” or “Who” can you ask questions of, you might ask? On Election Day many disability rights organizations are available by phone to help answer voter questions regarding issues that impact disability services. You can contact your local disability rights advocacy group to learn more about how you may be impacted by the pending election. Also, here are a few tips in regards to getting out to vote:

  • Make Sure You’ve Registered! Many states have specific times when you must register to vote in advance. If you missed the deadline this year, make sure to register in advance for future elections.
  • Confirm your poll location! Call ahead to your city or county government office and ask for information on accessible transportation, opening/closing times, available parking, or any other needed updates on your polling place.
  • Get the phone number! Find the contact number for your State Office of Protection and Advocacy, and bring it with you when you vote. If you run into any barriers such as lack of accessible transportation to the polling site, physical accessibility of the building itself, problem in accessing the voting equipment, or understanding your rights, this is who you can contact. This is also the office that can advise you of your rights in general under the ADA.

I know you might be thinking ‘Does it really matter if I vote?’ YES, Yes It Does. You don’t want to be the person asking ‘What’d I miss?’ or wonder later on what impact your vote could have had. Exercise your right to vote on November 8th. The world and history has its eyes on us, let’s make sure we all do our part to elect our next administration.

Bonus Points if you know how many references to Hamilton are included in this blog. But more seriously, get out and vote tomorrow November 8th…Your Vote Counts!
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Accessible Voting

You may or may not know it, but Tuesday November 4th is the day to vote. That’s right – midterm elections are here, and for many people that means they get a chance to make a decision about the makeup of Congress or governorship in their state.

But what do you do if you arrive to your designated voting site and the building isn’t accessible, or there are other problems which would cause you difficulties in casting your vote?

Go to the voting place prepared. You don’t want to be stuck – physically or metaphorically – at the voting site and not be able to cast your vote.

Here are a few tips to make sure your vote is counted:

  • Make sure you are registered to vote. There may be a specific time frame you must register in advance of a vote, so if you miss out this year, go ahead and register so you can vote in future elections.
  • If you are not sure, confirm your voting location with your city or county government office. You can also call ahead to ask information about where to park, whether there is accessible transportation, etc.
  • Get the phone number for your State Office of Protection and Advocacy and bring it with you when you vote. If you run into any barriers (lack of accessible transportation, physical accessibility of the building, problems accessing voting equipment, or understanding your rights), this is the correct office to advise you of your rights under the ADA and make sure you get a chance to vote.

Why go through the hassle of going to the voting booth at all?

  • Many states allow individuals to register as an absentee voter. Once you get registered, you can remotely cast your vote! For next time, plan ahead and register to absentee vote.
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Disclosing MS at Work – Community Experience

Since MSAA first partnered with the MultipleSclerosis.net staff, we have consistently been impressed with their willingness to share in our mission of improving lives today. We are pleased to have them as a regular contributor to our blog MS Conversations.

The majority of people who have MS are diagnosed when they are between 20 and 50 years of age. Because this coincides with the time when a person is most likely to be a part of the work force, people who have MS often have to consider their condition when making work-related decisions. Upon receiving an MS diagnosis, one of the biggest decisions they make may be whether or not to share this information with their employer and/or colleagues. While some people choose to be private when it comes to their MS, others may decide to be an “open book.” One of our patient advocates shared his experience about telling his employer and colleagues about his MS, and many of our community members shared their stories in response. We also asked our Facebook community members to share their experiences with us, and as you can see, people have very different stories to tell.

I’m hesitant to tell my employer and colleagues about my MS

  • Sometimes I will say I have a ‘neurological condition’ but I don’t go beyond that.
  • My experience is that most employers don’t want to hire a person with a condition that will increase insurance premiums. I would never tell an employer or future employer I have MS.
  • I think if I disclose my MS at work, I might lose my job. I can’t even work from home one day when I don’t feel well. I’m expected to be alert, healthy, and on top of my game. I feel like no one cares. As much as people can be compassionate, it is only to a degree. I need to be present, and I’m expected to perform. So, I play my role and I smile through pain and tears and I do my job. I don’t have much choice.

I had to make adjustments due to my MS

  • I had to disclose my MS because it could have become a safety issue at work, so my responsibilities needed to be adjusted accordingly.
  • I could no longer be productive and I became a danger to the public and myself. My employer knew before I did that I was having trouble. I drove an 18-wheel truck and set up POS networks. I just could not do the work anymore. Some of my employer’s family members had MS. The truth is I loved my work I had to come to grips with the fact that I just could not do it anymore. It’s important to be truthful to yourself about your capabilities at your job and then make a decision.
  • I had to go part-time instead of full-time three years after being diagnosed because of my symptoms and a number of relapses. However, I’m still trying to “stick it out” and remain employed because I find it quite fulfilling; if I don’t work, I get bored way too easily.

I wish I hadn’t said anything

  • Despite it being a private matter, even with HIPAA laws, word spread fast about my diagnosis at my work and people immediately started treating me differently.
  • When I told my employer, his response was dismissive, as if to say, “and what do you want me to do?”
  • My employer lacks compassion. Unfortunately, a few of my coworkers went out of their way to make it even more difficult for me.
  • I was essentially forced to leave, and I was then denied long-term disability benefits through my employer. Thankfully, I hired an attorney and eventually won.
  • I lost my job when my employer found out.
  • I lost my job of many years shortly after I was diagnosed in the 90s. Of course, they didn’t say my illness was the reason behind losing my job, but it was obvious to me. It was heartbreaking to lose a loved career after working so hard for so long.
  • I shared during my original interview to explain why I had balance issues. When a full-time position later became available, I applied and was told that they would not award me the position due to my MS. My boss said that if I became unable to work, they’d have no one to cover the additional hours. Although I sort of understood, it was blatant discrimination, and I reported it. My boss lied, saying she had never said that. I am still working there, as it is a job that I love with hours I am capable of handling.

Sharing my MS diagnosis was a positive experience

  • My boss is understanding, even though I can’t do everything I used to do.
  • My employer and coworkers have been very kind and understanding. It’s actually harder for me to tell people about my MS on dates than it was when I told my employer.
  • I’m glad I came “out.” My coworkers are very respectful, and I found out my boss’ wife also has MS.
  • Had I not told my employer what was going on, I would have missed out on being connected with the best MS specialist in my area. My boss happens to have connections who were able to get me in with my doctor, who was not accepting new patients at the time. Telling my employer was the best thing I ever did! Also, it is my personality to be very open, so it was never even a question in my mind. I do realize though, that in other positions, it might not have been the same situation, and I might have kept it under wraps if I knew it might mean keeping my job or not.

It’s important to note that there are employment discrimination laws in place in the US to protect you, particularly through the Americans with Disabilities Act (ADA). A legal resource such as the State Office of Protection and Advocacy, The Job Accommodation Network, or the Equal Employment Opportunity Commission (EEOC) may also be able to assist in helping an individual to determine what rights they have regarding disclosure, workplace accommodations, and/ or determining whether discrimination may have occurred after a disclosure is made. It is unfortunate that some people have had negative experiences when sharing their MS story with employers and/or colleagues. One can hope that this will improve over time, especially with an increasing awareness of MS.

Have you told your employer that you have MS? What was your experience? What advice would you give someone with MS (or any other chronic condition) regarding disclosing this information?

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