Disability “Shaming”

The word “shaming” seems to be popping up a lot these days. You see it in reference to body size (fat-shaming), the ridiculous and harmful criticism of women and their sexuality (slut-shaming) and the list goes on. I’ve even seen it used in conjunction with oversharing on Facebook and Instagram (online shaming). Like other popular sayings, it will go away, but it will do it’s damage before it’s course has been run.

As annoying as the catchphrase may be, I started to realize that “shaming” happens to us, to people with disabilities, and it happens a lot. We are shamed by doctors who talk down to us and leave us feeling silly, who don’t understand that we know a lot more about this disease than they give us credit for. We are shamed by our friends and family members when they don’t understand why we can’t do the things we used to do, be the people we used to be. We are shamed by strangers for things like using the handicapped parking spot we are entitled to use, for using assistive devices and for struggling to say the words that we are trying to get out in the right order, trying to make what is in our heads sound sensible and cohesive.

“Shaming” leads us to isolation. We eventually stop trying to make the able-bodied world understand ,we stop trying to explain our symptoms and fears to our doctors, we make excuses for not seeing our friends, going to parties or continuing our careers. It’s easier to be silent than it is to explain that attending that barbecue will have us flat on our backs for the next two days.

We have all had so many of the same experiences friends telling us that if we just follow the diet they read about, try juicing or stop drinking soda, exercise or pray more, we will be magically cured. The advice we get may be given out of love and caring, but what we hear is that we are to blame for having multiple sclerosis and it is shaming at it’s worst. Just because it comes from someone concerned about us doesn’t make it right, in fact, it hurts the hardest.

I have yet to come up with the perfect comeback for these situations, for the “shaming” I have felt. I wish I could come up with something that would explain that while I still want to be your friend, I don’t want you to make me feel shame for being ill, ever again. Maybe some of you have figured out how to get that message across because I haven’t, and I could sure use some help with this one.

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Comments

View Comments (8)
  • Jcat
    2 years ago

    I am also shamed. My house is always a mess. People don’t even invite me to do things. This really makes the depressionmuch worse.I just want to be treated like the person I was and are before m.s.

  • AllisonJo author
    2 years ago

    Darn it, it linked to the wrong article. The article is called “Picking myself up after I graduated to a new level of disability” Give it a read. Really inspiring.

  • AllisonJo author
    2 years ago

    Jcat, I just read this piece and it really hit home with me.

    https://themighty.com/2016/08/accepting-that-i-need-a-walker-for-my-multiple-sclerosis/e

  • AllisonJo author
    2 years ago

    Jcat, I totally understand. I am in the same boat and I get it. It takes me all day to do just the simplest things around my house and sometimes I avoid having people over because my house is a mess. I cancel things and I think people just stop inviting us after a while. I hate asking for help, but I have found out that it makes others feel good to be asked. I’m getting better at asking and it sort of helps the isolation as well. If someone brings me a meal or prescription then they stick around for a while it helps me feel less depressed. I am here any time you want to talk more, Jcat. Allison

  • Nancy W
    2 years ago

    It is hard to have the perfect comeback when I am not thinking straight. But here is a funny one. When I was newly diagnosed, someone told me, if I am hassled about handicapped parking, I should say “Oh my God, I have MS and now I must be blind. I guess I didn’t see the sign.” So, I waited til this happened. I went to the store, driving my visually impaired friend. Someone drove by as I got out and said something like “You should be ashamed.” I said Well, I have MS and she’s blind,” pointing to my friend!

  • AllisonJo author
    2 years ago

    Love this! I swear, people think it’s somehow their business what others are doing. It’s nuts. You have kept a sense of humor about this and I really admire that. It’s not always easy. 🙂 Allison

  • teelee
    2 years ago

    For this, I’ve used what I think is the perfect reply. “Buzz Off! Go sting yourself with bee venom & get back to me.” It usually invokes some laugher and conveys that this is not something I’m interested in.

    About 20 years ago, this was the “it” thing. I was telling my family doctor how my father was pressuring me to do this. He was rolling his eyes and asked what I said. I told him that I told my father to, “Buzz off!”, along with a few other suggestions. He thought it was the perfect response.

  • AllisonJo author
    2 years ago

    It is a BRILLIANT response, teelee. I will have to remember it for the many instances in which I was given ridiculous advice. Most recently I was told I should go on the paleo diet, that it could “cure” me. If only I liked eating meat.

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