Cystic Fibrosis News Today Forums Forums Support Groups Adults​ ​With​ ​CF Mobility Aids and Invisible Ilness

  • Mobility Aids and Invisible Ilness

    Posted by bailey-anne-vincent on October 7, 2020 at 11:04 am

    As I continue to heal (and stick with this “surgery theme” of the week), I keep wondering how many of you have used mobility aids before?

    I am using a walker post-surgery, and upgrading soon to a cane for long distances, but honestly, I think I might be “hands free” for the most part pretty soon. I can be weird about using wheelchairs even when I need them (after surgeries), and often refuse mobility aids for no major reason. Maybe it’s because of shallow dancer pride, or my own fallible notions of “being strong”, but mobility aids (and handicapped stickers) have never been friends of mine, now or in the past.

    I know this has a lot to do with my own internalized ableism, and of that I’m ashamed. I’m trying to reflect deeply on this deep fault, but I’m also trying to be honest about said faults.

    In all honesty, how do you feel about mobility aids and the concept of “visible” illness? Has having a mostly “invisible illness” shifted your thinking?

    tim-blowfield replied 3 years, 6 months ago 4 Members · 4 Replies
  • 4 Replies
  • tim-blowfield

    October 7, 2020 at 6:19 pm

    Have you seen what the ‘little ol’ ladies’ do with Zimmer frames in the musical ‘The Producers’. In a show by the Production Company in the State Theatre in Melbourne, Australia they were cartwheeling all over the stage. Hope you feel that well soon!

  • jenny-livingston

    October 8, 2020 at 11:16 am

    Oh, I can relate! When I had my tendon injury, for 7 weeks I was in a hard cast and used crutches. More than feeling a little insecure or uncomfortable, what I didn’t like were the sympathetic responses. “Aww, you poor thing” or things of that nature. I don’t care for sympathy, which is different than empathy (and this is something I could talk for a very long time about). Sometimes, because my arms tired of the crutches, I’d use a wheelchair and following the hard cast, I was in a walking boot for another 6 weeks. This was better! Not only was it more comfortable to use, people didn’t seem to notice it as much.

    I think examining our internalized ableism (and all other “isms”) can only lead to better understanding. As you said, this is a time to reflect; to sit with those feelings. And know that it’s okay that you’re feeling this way!

  • paul-met-debbie

    October 15, 2020 at 10:39 am

    Well, I walk our dog four times a day and it always amazes me how perfectly this animal body of hers is suited for everything she does. No matter what surface, wet or dry, hot or cold, soft or hard, her paws are always the perfect fit for every walk and run.

    Compared to this, my body is dependent on all kinds of mobility aids.

    Before walking her, I remove my house slippers, search for suitable socks (need my glasses for that), find and put on my shoes and coat, when cold also a shawl and gloves (“Honey, did you see my gloves?”) and hat, before even opening the door. Did I mention sunglasses, mobile phone? All are mobility aids, come to think of it. Not to mention everything else to cover the rest of my pink skin. She doesn’t need any of those. She knows the drill and just waits patiently at the door, ready for action every second and wondering why I always take so long.

    She can go 20 miles an hour without thinking, using her nose and eyes for navigation, I need my bicycle-prosthesis and google-maps to do that. If I want to go even faster, I need my automotive mobility aid (car) with inbuilt nav-screen.

    Invisible? With our fragile, incomplete, thin-skinned, brittle, slow and bald bodies we are visibly very incomplete and dependent on so many artificial aids to do the most simple things like moving. When we see all those as “normal”, then a couple of special extra’s like a stick or walker or even a wheelchair or Rascal we could take on the stride as well I suppose. Compared to other animals, we are inhabiting a most unable body even when in our best health. We are a walking immobility-ad. No reason to develop ableism from that. Nor should we be ashamed about it.

  • tim-blowfield

    October 15, 2020 at 5:38 pm

    Sadly not all pet dogs are as fit and healthy as yours. Over my 50 years I have seen many severely disabled pets. Heart disease is too common, Cavs with syringomyelopacia, Dachshunds who get about using trolleys as their spine has been damaged, breathing issues with Pugs and so on. Many of the more severely are euthanased. Have not seen a genetic disease equivalent to CF but most severe genetic disease are actively selected against and bred out. Hip dysplasia in Labradors and German Shepherds is an example. Proponents of Eugenics would have the same for people. Indeed current medical testing (amniocentesis) and abortion laws makes it possible and many foetuses with Downs Syndrome are aborted. Yet many Downs people who live are greatly loved by their families and community. Foetuses with CF mutations are now often aborted. This is an ethical issue we need to address. it will not go away!

Log in to reply.