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  • Does disability-specific recognition matter?

    Posted by deann-r on September 15, 2023 at 2:38 pm

    Does specific recognition matter when it comes to your disability?

    What I mean is, is it important to make it known I have SMA versus another condition like MS or CP? Most of the time people have no clue what I have. Even when I tell them, often it gets confused with other diseases. Most often I don’t correct them, even though there are vast differences.

    When it gets confused at the doctor’s office or even in the hospital, I am sure to point it out if they get it wrong. When it comes to treatments, I can’t afford a mix-up.

    mike-huddleston replied 7 months ago 3 Members · 2 Replies
  • 2 Replies
  • alyssa-silva

    Member
    September 18, 2023 at 6:53 pm

    It’s not necessarily important for me to make it known. But I don’t mind telling people about my disability because I find it to be a good teaching moment. They do have to ask me first though. Otherwise, I won’t say a thing. And if they try to compare it to another disability, I’ll just give some vague answer about how it’s similar but not. I don’t ever go into great detail. However, the hospital or other medical settings are a different story. Advocacy is KEY.

    If people ask about your disability, how much are you willing to share?

  • mike-huddleston

    Member
    September 21, 2023 at 3:07 pm

    For me, I don’t shy away from it, but don’t offer it unless either specifically asked out of genuine concern or curiosity, in which case I use it as an opportunity to inform or educate, or in a medical setting. Most people don’t grasp the differences between conditions anyway. You can tell the difference by how much their eyes glaze over if you start to go into even the slightest amount of detail. I pay somewhat close attention to this to help determine if they are genuinely concerned or interested to know more. I can give the 30,000 foot view, reassess, let them ask more questions if they choose, and then proceed accordingly.

    If they are just being nosy or some other obvious reason behind their motivation for asking that I’m not particularly fond of, as soon as I pick up on this, I just say something like, “I just use this (while tapping my wheelchair lightly) for the great parking!”

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