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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

  • This topic has 2 replies, 3 voices, and was last updated 7 months ago by Ryan Berhar.

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      • #18790

        I used to portray dating as a disabled person as copacetic. Chilled. Something not out of the ordinary – and even when before I was a wheelchair-user, this didn’t ring true in many respects. At the time, sure accessing places where young people connect and are likely to meet partners, was easier but it was just a different burden. Not appearing visibly disabled used to give me what felt like stomach ulcers when I suddenly was asked to dance or come upstairs to hang out with a potential.

        I now had the daunting task of revealing something no one expected; I didn’t quote on quote look disabled, I was at a place (likely a night club) where most disabled people didn’t go so how could I possibly be disabled? The music is blaring, people are pushing and moving around us and I’m choking out “I actually have a spine disease! So uhm, I can’t go upstairs. You’ll have to carry me.”

        Naturally, this used to go over most men’s heads; they thought it was cute that they had to carry me upstairs. But the worst part, long after leaving the club, was torturing myself with how I was going to disclose my disability eventually.

        Not disclosing felt like I was being disingenuous and posed a physical risk to me if the guy ever decided to playfully nudge me (due to absent reflexes, there was a 99.99% chance I’d fall and as the disease goes,  I wouldn’t independently be able to get up).

        But I’m in my late teens; I’m dying to be cool and normal so do I play it off when I tell him; not make it a big deal and risk misunderstanding of my limitations? Or do I lay it all out in all its potential seriousness?

        At the crux of weeks of typing and untyping, calculating the best day and time, deciding on tone, what young me wanted to say was I have this strange disease that I was born with. It’s difficult on some days, on some I wish I didn’t have it and on other days I feel guilty for wishing that. I haven’t figured out who I am in this thing yet and how to embrace it. I haven’t figured out how to affirm that ability isn’t a measure of value. Most importantly, I’m just scared that I’ll present myself to someone who’ll find me lacking because secretly, I think there should be more to me too.

      • #18793
        DeAnn R
        Keymaster

        Thanks for sharing! I don’t have much experience in the whole dating department. My level of disability was much more obvious, so I never had to do the, “Oh, by the way…” explanation. I can see where it would be difficult to find the right moment. It’s not something that easily just fits into the conversation. Especially when you’re out.

        With that being said I think self-confidence plays a big role in how other people see and react to us. Of course during those teen years, well maybe not just teen years, it’s easier said than done. I’m way beyond those years and still struggle with it. What’s helped me the most is focusing on what I can do and trying not to dwell on what I can’t. I can’t control how other people react, so I try not to be bothered if I didn’t get the reaction I was hoping for. Being open and honest is really all you can do.

      • #18812
        Ryan Berhar
        Participant

        Like DeAnn, my disability is obvious, so I haven’t dealt with this particular issue, either. If I were you, I’d put it out there as early as possible. Why prolong the inevitable? If a guy has a problem with your disability, he’s not for you anyway. May as well figure that out sooner rather than later. When it feels appropriate, just say something like “I thought you should know that I have this disability. Is that going to be a problem?” The fact is it will be a problem for some, but it’s much better to get that figured out quickly. At least that’s how I see it.

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