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    • #32590
      Christie Patient
      Keymaster

      July is Disability Pride Month. While a lot of disabled people consider this a month to celebrate our unique differences, it can be harder for some to accept and embrace their disability as a core part of their identity. There are so many facets of life with a chronic illness or disability that may make it hard to feel like something to celebrate. While I know there is a huge community of people who rally around disability issues and support chronically ill people, there are still stigmas about health (both physical and mental), societal expectations, and outward and inward expressions of ableism abound in our daily lives.

      Last year I wrote this column explaining my mom’s journey to attempt to accept her progressive disability from IPF. She never really got there, as her condition worsened quickly enough to necessitate a lung transplant. But now, living as an immunocompromised individual–especially in a pandemic–my mom embraces her transplant story and is never afraid to advocate for accommodations when she needs them.

      What is your relationship with the word “disabled”? Do you identify with this word and this community? If not, why not? Has there been something in your life that has helped you to accept your illness and/or celebrate your disability?

    • #32626
      Karen Martin
      Participant

      Even though I realize IPF is considered a disability, I guess I don’t think of myself as disabled most of the time.  Being almost 72, I have been retired long enough not to always feel the need to maintain the pace I used to.  Growing up, my two brothers were developmentally delayed, so “disabled” was a word I heard often, but they were just brothers to me and the way they were was simply unique to them so I don’t see “handicapped” as being awful, just different.  If you look closely enough, I think you will find nearly everyone you see has some sort of disability/handicap.  It is lovely when someone offers me help and I will accept it when I need it,  just as I will offer help to others when that is possible.  I’m grateful for all that I can still do and all the people who support me.  In the end, that’s really what life should be about, isn’t it?

    • #32651
      Bob Rawlins
      Participant

      Karen, just awesome outlook!

       

      I tried the same positive wnergy after I stopped denying I had a serious lung disease like IPF.

      I was on oxygen for almost 3 years 24/7, 3 lpm all the time and more.

      was fortunate to receive a DLT 7 months ago, but honestly, I was so used to loving my life as best I can that I almost didn’t do the transplant.

      But I’m glad I did. And it is a new journey and I will continue to remember your awesome positive attitude.

       

      thank you and God Bless You

    • #32660
      Christie Patient
      Keymaster

      Hi Karen and Bob @casey @oxygenman, Thanks for sharing your thoughts.

      Yes, Karen you have a great perspective that I agree with wholeheartedly! The world is better when we can support each other–give help to others when they need it and gratefully accept it ourselves when it’s our turn. We are all just a big human tribe after all. Connection is what matters most.

      And no, there is nothing at all wrong with being disabled! I do know that some people struggle to accept it as a part of their identity, or they don’t identify with it at all, even when an illness takes a significant toll, for example. Other people embrace the label and feel empowered by their disability.. It’s all valid! Disability is a club that anyone can join at any time, so I think it’s interesting to see how people in the PF community relate to the community and identify with the word. It’s such a cruel disease, but there can be pride and deep connection in it as well.

      Bob, I also love your attitude about this. Especially when you say “I was so used to loving my life as best I can..” That’s really awesome and I am trying my best to do the same. I’m glad your transplant went well and you are continuing to thrive and love life!

      Christie

    • #32666
      gil
      Participant

      Karen,  I like your attitude about self and others, and yes life is good when we do the right thing.  Thanks for sharing.

      gil

    • #33820
      Mike
      Participant

      My 2 cents:  Like many words in our new woke world, many are not used correctly.  Pride is one of them.  Pride has been adopted by the gay, and now the LGBMQ communities.  This is, in my opinion, a correct usage of the term, as for most of recorded history, these groups were treated inhumanly.  By expressing their pride, it showed a sense of solidarity with others, and a statement that discrimination against these individuals is no longer acceptable. Most of us in the US don’t really put these individuals into these categories, and they enjoy full inclusion and equality in our society.

      Having said that, I disagree that ‘pride’ should be used to highlight a disability.  It would be more compassionate and inclusive to use the words, ‘Acceptance’ or ‘Understanding’.  One can’t really be proud to have a broken leg, cancer, or IPF.  (Maybe one can be proud to have lost a limb in service to their country,)

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