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  • Empathy and Understanding

    Posted by kevin-schaefer on September 28, 2018 at 11:40 am

    In Alyssa Silva’s column this week, she shares some heart-wrenching stories of ignorance and writes about the importance of more compassion and empathy: https://smanewstoday.com/2018/09/28/sma-other-disability-communities-deserve-understanding/?amp.

    The story she tells at the beginning of this column is particularly frustrating. While kids often blurt out inappropriate and cruel things, the parent here should have said something. It’s sad, but I would venture to say that most of us have encountered similar situations.

    I think one of the best things we can do to prevent this kind of ignorance is to raise awareness about SMA and other disabilities. Kids especially need to be educated about those of us in wheelchairs and with other disabilities, and parents need to encourage their kids to ask questions.

    Do you all have any things you like to do to advocate for people with disabilities and raise awareness? This weekend I’m going to a Cure SMA walk and roll fundraiser with some friends. I’m also going to talk to my sister, who’s a first grade teacher, about coming to her class sometime this year to talk about living with a disability.

    kevin-schaefer replied 5 years, 8 months ago 4 Members · 6 Replies
  • 6 Replies
  • adnan-hafizovic

    Member
    October 2, 2018 at 10:18 am

    We had experienced similar things,of course it hurts that.My nephew is seven and he also have SMA and in class one kid talked to him how he is weak and other things.When that heard his teacher,she is talked with all his classmates about how is bad to talk that and it has efect.

    • kevin-schaefer

      Member
      October 2, 2018 at 12:17 pm

      Sorry your nephew had to experience that Adnan. Yeah, we definitely need more empathy and awareness for people in various disability communities. It’s good though that your nephew has you to talk to about things like this. Thanks for sharing.

  • ryan-berhar-2

    Member
    October 2, 2018 at 8:03 pm

    Bringing awareness to SMA is pretty difficult. It usually has to be done little by little. Like if I meet a new person, I usually end up explaining it to them. This is one reason I love writing my weekly column. It’s a great way for me to bring awareness on a broader scale.

    • kevin-schaefer

      Member
      October 3, 2018 at 11:36 am

      Yeah it can be hard to give a full explanation of SMA when someone you just met asks you questions. I think it’s good to have a basic description that you can use, and then you can tell people that you write for an SMA site. I usually hand out business cards when I talk to people who are genuinely interested in learning more.

  • deann-r

    Member
    October 4, 2018 at 11:05 am

    Sometimes I feel a negative reaction as Alyssa described is better than the blatant ignoring I get much of the time.  At least if there’s a reaction you can respond.  I’m trying to do better about not being offended and making it a teachable moment.  A lot of the time I get the people who rush past that you can tell are making a conscious effort not to look at the person in the wheelchair.  One time I needed assistance and couldn’t even catch someones eye to ask for help.

    • kevin-schaefer

      Member
      October 4, 2018 at 12:17 pm

      I agree that it is better to be able to educate someone than to just be ignored. It’s really frustrating when parents drag their kids away from us and tell them not to say anything or ask questions. That only increases their ignorance.

      On a brighter note I did write a column a few months ago about a kid who approached me and asked a really intelligent question: https://smanewstoday.com/2018/02/27/sma-the-question-that-surprised-me/?amp. This encounter gave me hope.

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