• W. Hoh replied to the topic Monday Shoutout: The Capable Disabled in the forum Adults​ ​With​ ​Cystic Fibrosis 2 months, 2 weeks ago

    This capable disabled individual is a physician who became disabled due to a spinal cord injury in the US Army Medical Corps during the global war on terror (GWOT)… specifically Iraq military engagement.

    When I had recovered enough; my wife and I decided to have children. Our first child was diagnosed with cystic fibrosis early in life. (We decided not to have anymore children after that.)

    My son was also diagnosed with moderate to severe autism at age 3 with some level of mental impairment, formally called mental retardation.

    It’s been a serious challenge, being a father to a child with CF and autism while struggling with my own life changing injury.

    I’m not telling my story to gain sympathy for myself or my son. I’m doing it because I know that others have similar experiences and may be other just starting their journey as a disabled parent of a CFer , or have traveled many more miles down this road. And of course CFers can have children with CF or other disabling conditions.

    I know my story is not unique. My wife has an autoimmune disease that is slowly destroying her joints and her ability to care for our son. She can relate to what I’m going through.

    I also know of a blogger at CF news today, Bailey Vincent, who has shared that she has both CF & deafness.

    I would appreciate knowing how the two interact in Ms. Vincent’s life, making her struggle with CF more difficult. (She had discussed how deafness makes CF procedures more challenging and I know it takes courage to talk about personal things like that publicly.) I know she is also a dancer, and that has to be a challenging career choice for her.

    And anyone else that wants to share, I would be more than happy to listen. Thank you.

    • Oh my goodness, Dr Hoh… Thank you so much for this insight and for sharing your story! (And for this prompt, which I truly appreciate and feel humbled by)

      I wish had a really thought-out response to this, because I cherish knowing more about you and your family, but I’ll be super honest when I say that… I personally really struggle with a lot of the identity politics surrounding disability? And I don’t feel like I’ve found my comfort space yet? (But I’m certainly closer than I once was!)

      I definitely love the term “capable disabled” and love learning more about other’s journeys juggling more than one thing, but then when I look at myself and my own “juggling”…. I feel like I’m failing more often than not.

      Often, I feel like I either allow myself to be fully sick and feel it and take that time off, so to speak, OR I am completely denying it because I “can’t” take a break or show an audience/employer/dance boss my illness and thus pretending it’s not a part of me at all? Does that make any sense? Basically, I feel like I’m two people half the time, and constantly bouncing back and forth between both when one can’t hold up any longer.

      I feel like Deafness impacts me a lot less than illness does, technically (because operations and pain take so much more time and force so much more pause), but I do feel frustrated frequently with struggles like reaching a doctor’s office myself (receptionists will often hang up on relay calls), or feeling as autonomous as I once felt now that everyone is wearing masks, or feeling like so many things in a medical setting are based upon auditory cues (CT machines, for example).

      I’d also be so curious to learn what other’s think or have grappled with? What a prompt!

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