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Disabled Doesn’t Mean Dead

When actress Selma Blair recently announced her Multiple Sclerosis diagnosis, one of her first sentences contained the phrase “I am disabled.” This is something I fervently applauded, however, it didn’t take long for me to see people questioning her use of that word. Worse so was the fact that I saw people disparaging her claim of being disabled in the comments of someone who has MS. So even though I’ve talked before about being disabled doesn’t look like you think it should, I thought I’d elaborate some more. I want to remind people that just because someone is disabled, it doesn’t mean they are dead. They still very much have lives, just like you.

Understanding is critical

It seems especially important to bring this up these days. We live in a time where it feels, to me anyway, like the liberty and rights of many people could be in jeopardy. Furthering the knowledge of what it means to be disabled is an absolute necessity. Even if you don’t agree with that line of thinking, spreading knowledge is always beneficial. Understanding what it means to be disabled is critical to the survival of those in that situation.

What do we mean by disabled?

The dictionary defines being disabled as someone affected by disability. Disability is defined as “a physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person’s ability to engage in certain tasks or actions or participate in typical daily activities and interactions.”1 It may seem hokey to simply paste a definition there, but it’s important for people to read that, to take it in. When most people use the word, they are thinking about it in the context of working. I hate to say it, but there are many people with an illness like multiple sclerosis that have their ability to work impaired, interfered with, or limited. For some, they may not be impaired all of the time, but to successfully maintain a job, frequent impairment makes it next to impossible. I think that part is what makes all of this so misunderstood. The “they look fine to me” or “I saw them do this or that, why aren’t they working?” attitudes. Many people who are technically disabled can perform some tasks, but they can’t do it consistently.

Lack of dependability

One of the hallmarks of people that are considered disabled is their level of dependability. I can tell you that for me, my body is incredibly undependable. There is a reason I cancel so many plans and lose so many friends.  It’s because I can’t rely on my body. I can be fine one minute and not the very next. It’s an incredibly frustrating existence. You wake up and you don’t even know if you’ll be able to shower, let alone do something more productive. I think a great many people think that a disabled person has to be limited 100% of the time, which simply isn’t the case. Not knowing when we will have problems and not being able to depend on our bodies probably encompasses the vast majority of people who are considered disabled.

The disabled still have lives

While people that are disabled may not be dependable, they still try to live their best lives. If they look fine to you, that’s on purpose. You likely wouldn’t be able to see them if they weren’t doing well at that moment. It also doesn’t mean they won’t suddenly have to excuse themselves. I understand it can seem confusing, especially with social media, where only their best moments may be on display. Realize that you don’t see the bad moments, you don’t feel the unpredictability. I’ve mentioned before how those that are sick and disabled shouldn’t have to apologize for having fun, but please realize that even if they appear to be fun and have no issues, it doesn’t mean they aren’t simply putting on their best face and suffering in silence.

Think before you judge

As a final thought, I want to remind folks to think a little harder before they judge someone for saying they are disabled. When you are actually considered disabled, it’s a very hard word to use. For all I write about it, I still have a hard time actually speaking the words “I am disabled.” Very few people ever want to have to admit that; it’s a crushing feeling. Another reminder before I go, if someone is “getting disability,” as in they are getting government assistance, I assure you they have earned it. The process of being considered by the government for this is thorough and extremely difficult, no matter how bad your disability is. Are there occasional mistakes and people slipping through the cracks? Maybe, but if so, they are very, very much in the extreme minority.

I’m often asked about how I ended up being disabled. If you want to read about that, you can check it out here.

Thanks for reading!

Devin

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

  1. Anon, (2019). [online] Available at: https://www.merriam-webster.com/dictionary/disability%22%3EDisability [Accessed 15 Feb. 2019].

Comments

  • kxralp13
    6 months ago

    This is such an amazing article! I wish I could share it with my friends, family, coworkers, acquaintances and anyone else I run across in day-to-day life.

    I am recently diagnosed, and I can’t tell you how many times I hear “Well, you look good.” You totally hit the nail on the head when you said about others that they don’t see the bad moments or the unpredictability. I wouldn’t be there if I were having any of the various symptoms, and that could change in minutes, days or hours.

    I could go on and on about how great and needed this article is! Bravo.

  • Devin Garlit moderator author
    6 months ago

    Thanks so much @kxralp13! I hope that you do share it with some people and help educate them!

  • kxralp13
    6 months ago

    I intend to! Your articles have been so helpful for me in this difficult time. I hope you know what a far reaching and positive impact you are making. Thanks again, Devin.

  • Donna Steigleder moderator
    6 months ago

    Lcxralp13, if you want to share it with your family and friends you can click on the icons at the top of the article and post it on your facebook or twitter account if you would like. That’s one way of spreading the word around! We love to share our posts and make others aware of MS news.

  • kxralp13
    6 months ago

    Hi Donna,

    I don’t do social media outside of this at the moment, but email forwarding to friends/family is always a good option as well. Thanks for the comment/reply. It is so important to educate and share.

  • RossB
    6 months ago

    Excellent article Devin! I went back to work for 1 year after my initial MS strike. I have been receiving Disability insurance from Social Security and a private Long Term Disability Insurance that totals 2/3 of my pay at the time of my leaving the work force. I was burning thru my Paid Time off at an alarming rate, and I felt I was not able to provide a good value to my employer for my favorable salary.

    Let’s also remind folks, we are talking about insurance with Soc Sec Disability Insurance as well as Long Term Disability Insurance. Not welfare, Insurance you and I have paid for. In my case from the time I was 14yrs old until I was nearly 46. I have had to correct a few flippant remarks of “Oh, so you’re on welfare!” with noticeable distain in their voices.

  • Devin Garlit moderator author
    6 months ago

    Thank you @RossB, very, very good points!

  • gmc
    6 months ago

    Excellent points, all!

  • Donna Steigleder moderator
    6 months ago

    Well, said Devin.

  • Ahollmann22
    6 months ago

    I have MS. It’s a disability that effects me every day. I am still able to work and function. MS does not stop me in my path ! One day, I will have to stop working, I am not there as of today !

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