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    • #17711

      Happy Tuesday! Here’s a link to the latest installment of my column, in which I talk about vulnerability and how difficult it is for me to advocate for myself. I don’t doubt that anxiety has something to do with it, but at the same time, disability seems to play a very unique role.

      I don’t know why I’m so averse to admitting my needs. Online, I can pass as abled, but in person, there’s no mistaking the wheelchair. Everyone knows I’m disabled, and those who don’t know the specifics of my diagnosis can still piece together the importance of accommodating me. But still, I resist—scared to stick out, to be the reason my friends and I can’t do this or that.

      I’ve talked about this before, and I’m happy to report that I’ve gotten better at advocating for myself. That being said, it’s still difficult, and will probably always give me anxiety—something I’ve long since accepted.

      How do you cope with advocating for yourself? Any tips or tricks you’re willing to share? And if advocating comes easy for you, do you mind sharing why? Brains are so diverse—I love discussing what people do and do not struggle with!

    • #17749
      Halsey Blocher

      I think advocating for ourselves is often a learning process. I also think it’s important to have good social workers, case managers, doctors, etc. whom you work well with and are comfortable talking with. I personally have learned a lot about advocating for myself by watching my mom advocate for me over the years. She always does her research, communicates well, listens to the other person, and stands up for what is best for me. At this point, I mostly handle these things with some assistance, but my mom is huge role model in self advocating. And many other things.

      • #17797

        It’s great that your mom has been a role model for you! My mom has been a role model for me as well. She did most of the research and advocacy work when I was diagnosed, and I’ve slowly been taking over all the different responsibilities. Strangely enough, I’m fine when it comes to medical professionals and things like that – I struggle the most with my friends!

        • #17811
          Halsey Blocher

          A lot of my friends have been around for many years, so they know how and when to help me without me really having to ask. Any new friends that are worth having are usually quick to step into the role of my helper. It can be strange asking new friends for help, but it gets better once you get to know each other. I’m not sure if you know Angie Lee? She has a blog called Delbasid, and recently wrote an excellent article about this.

    • #17758
      DeAnn R

      Over the years I’ve struggled with this as well. Self advocating has become easier over time. When I was in school it would really bother me when I discovered “friends” would have get togethers without me. Of course back then I didn’t let it show, or say anything. Now I would be more likely to chime in and say, “Why wasn’t I invited?” Usually the response is something to the effect they didn’t think I’d want to come. Sometimes if I know something is going on I just show up. I’ve also gotten better about doing things on my own. When I do, I try to make a point to try to strike up a conversation with people. If you make it about them they’re much more receptive.

      As with Halsey, my Mom was great at nudging me to be my own advocate. I make all my own appointments even though it’s tough sometimes scheduling around if I need a ride from her, but we make it work. She’s also good about letting me take the lead when ordering at a restaurant or getting tickets at the movies.

      In all honesty I don’t think most people care if you’re disabled. They just don’t know how to react, or know what you need. With that in mind I’m much more likely to just be upfront with saying I can’t reach something or that I need help with this or that.

      • #17800

        It’s so great that you show up to things when you haven’t been invited – I wish I had the guts to do that, but it’s definitely something I can work towards. 🙂 I totally agree that in most cases people just don’t know how to react. It’s always a relief when I go to a clinic because a lot of nurses know how to help me and aren’t as awkward about it as those who aren’t in the profession. One less thing to worry about!

    • #17759
      Kevin Schaefer

      Thanks for sharing Brianna.

      Similar to what Halsey said, I definitely learned a lot from my Mom about advocating for myself. She instilled in me the importance of articulating my needs to people, whether in school or in social situations. She and my Dad are great communicators, and they taught me the importance of this skill from an early age.

      As far as being vulnerable and doing things like asking strangers for help, I just know that it’s something I have to do. It’s always a little awkward when I’m at a coffee shop by myself and I have to instruct the barista through every step of taking my debit card and handing me my drink. I did a column on this a while ago: I often tackle these situations with humor, and I’ve found that people are incredibly willing to help me when I ask. It’s just a matter of getting over that initial anxiety.

      As far as being vulnerable with friends, I don’t mind telling friends when I need help or if I can’t do something because I’m fatigued. True friends are incredibly understanding and supportive. I’d really encourage you to go to a comic con with some friends sometime. It’s a great place for nerds like us, and the people there are great. I’ve found that at cons I don’t get asked a lot of the dumb and ignorant wheelchair questions that I get asked almost anywhere else. I fit right in there, and everyone at cons just likes to talk sci-fi and anime. And when my disability does come up, people there ask intelligent questions.

      • #17802

        It’s great that you’ve gotten used to asking people for help! I’ve definitely gotten better at it over the years, so I agree that it’s just something you have to do over and over again.

        Do you have trouble with not being heard? That’s honestly why I haven’t gone to a con yet – I can talk fine when things are quiet, but in a large room with a lot of people it’s practically impossible. I get fatigued so quickly, and my voice just isn’t strong enough.

        • #17807
          Kevin Schaefer

          So I know I’m a rare SMAer in that I have a pretty loud, booming voice. I know I’m fortunate in this regard, as a lot of people with SMA struggle to speak up. At cons though, there are spots you can hang out in that are a little quieter. Plus, people there are just more understanding when it comes to stuff like this. You could also use something to type with instead of speaking when you’re there.

    • #17763
      Michael Morale

      When I was growing up, my parents always taught me that nothing was free. If I wanted to make good grades in school, I had to work just as hard as anybody else. This also meant that if I needed help, that it was going to be up to me to ask for it. They taught me that asking for help was not a sign of weakness, and while they never used the term advocating for myself, this is exactly what it turned out to be.

      When Kevin talked about being vulnerable with friends, I never really had a problem feeling that way because everyone that I grew up with automatically knew that I needed help doing certain things. It wasn’t uncommon for my friends to just do something for me without me asking for it, because this is the way that we were brought up. Children back in the late 60s and 70s, I think, had more empathy than the kids of today’s generation.

      • #17806

        It’s so interesting how our parents raised us all in different ways! My mom was initially going to raise me as a single parent, so I think she stepped into the role of advocator without a second thought. Once I entered high school, it quickly became apparent that I’d gotten used to other people advocating for me, which is why it was such a sticking point in my IEP – I learned a lot in those four years! I’ve gotten so much better, but I still struggle, especially when I’m with people who aren’t used to my disability and aren’t entirely sure how to help.

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