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  • Let’s Talk About Disability Pride Month!

    Posted by jen-cueva on July 19, 2022 at 10:41 am

    Those of us in the PH community always want to educate and empower disabled communities. July is recognized as Disability Pride Month.

    For those unaware of this celebration, it’s mostly about fighting ableism, changing the stigma around disabilities, and celebrating those in the disability communities. Mike Naple wrote a great column about this subject.

    It doesn’t matter if a disability is visible or not; those of us within the disabled community must have pride not only this month but daily.

    How do you feel about Disability Pride Month? Do you consider yourself disabled? Why or why not?

    jen-cueva replied 1 year, 8 months ago 4 Members · 20 Replies
  • 20 Replies
  • roger-bliss

    Member
    July 25, 2022 at 1:25 am

    Interesting topic. We went to a disability pride event in Anchorage Sat. Our grand daughter is up visiting from FL. Her other grandfather lives in Anchorage. He takes care of a guy with cerebral palsy. We had a “family get together” at the event to support his client, had a good time.

    There were 50 or 60 people there. There were only 4 or 5 people there that were “obviously” disabled. I am sure there were many others. The only clues I had was someone doing sign language during the speeches and all the handicapped signs/plates on the cars in the parking lots.

    I don’t consider myself disabled. I can still do way more than many people my age. Can work 10/12 hour days with my truck. I can’t do all the things I did in my younger years. Since I got short of breath carrying a suit case up a flight of stairs……I have taken climbing Denali off my bucket list.LOL

  • jen-cueva

    Member
    July 25, 2022 at 1:54 pm

    Hi @wheeldog, you have an interesting take on this topic. I like how you share that you didn’t notice the disabilities except for clues like sue of sign language and the plates and placards.

    Your example shows us that not all disabilities are visible. My column coming out this week is about this topic, too. I’ll share it here when it publishes.

    Working 10-12 hours days certainly sounds exhausting to me. I’m happy you can do that and not crash the following day. Heck, it’s almost noon here, and I’m still in my PJs. But no worries, I’ll be dressed before I head to pick up groceries shortly. But there are also others with disabilities that work those long hours and more. Everyone is different, just as our definition of “disabled” varies.

    Too funny; I love that you scratched climbing Denali off your bucket list.

    Thanks for sharing your thoughts on this topic. Enjoy your granddaughter’s visit.

  • brenda-denzler

    Member
    July 25, 2022 at 2:36 pm

    Well. I just logged on here to have a chat and was looking for which forum I should post under. This thread line caught my eye and seemed very appropriate. You asked, Jen, whether we think of ourselves as disabled, and why or why not?

    I wasn’t paying attention to the fact that it’s Disability Pride Month. I was just getting tired of using up all my energy trying to run errands. Having to park further away from the door of the store can be a complicating factor. There are times when I’d give anything to have a handicapped hang tag. So, I asked my doctor (PCP) how he’d feel about authorizing one for me.

    I picked up the paperwork from him today. All I have to do is send it in to the DMV and get the tag. I feel very ambivalent about it. A hang tag sounds like a cool thing to have, when you don’t REALLY need it. It sounds like a “fun cheat.” But when the hang tag is a statement that you have health limitations that you can’t overcome? Takes all the fun out of the idea of having one.

    • Colleen

      Member
      July 25, 2022 at 8:21 pm

      @brendad53 I totally get what you are saying about the handicap placard. During my son’s first visit with his PH specialist we weren’t even considering this option. It was the PH nurse who handed us the form and encouraged us to get one.

      For a while we only used it when my son thought he needed it…but let me tell you, when it often needed it was for the return back to the car. He would go into a store feeling capable then be gasping for air and fatigued on our way out. We eventually just started using it whenever Cullen was with us.

      Did we ever get questioned about? Yes, a few times, but who cares! Your health and well being are what is most important. When you pull away you will probably never see that person again so who cares what they think.

      I encourage you to proceed. I think you will be happy that you did!

      • brenda-denzler

        Member
        July 26, 2022 at 5:32 am

        I’ll get it, Colleen. One of those “better to have it and not use it than to need it and not have it” deals.

        I guess the deciding event, for me, was going for an oncology check-up. I stopped by Wal-Mart for 15 minutes or so, first. Then went to Whole Foods for 10 minutes or so. Then parked right outside my oncologist’s office door, took the elevator up to the third floor, and walked 20-30 feet to the receptionist’s desk. I was panting so hard she thought I’d taken the stairs.

        I can identify with Cullen.

      • jen-cueva

        Member
        July 26, 2022 at 12:54 pm

        Good for you, @brendad53. I think we all have to experience a few of those panting like we just ran a marathon day before we give in on this. I know I’ve had many episodes like this.

        Still, if there’s a parking close to the accessible parking spot, I’ll park in that one. I say I’m saving that for someone who needs it. My hubby and daughter always remind me that I need it. Ughh…but I’m now accepting this on most days.

      • brenda-denzler

        Member
        July 26, 2022 at 8:18 pm

        I’m like you, Jen. If there’s an available spot 2 slots away from the handicapped spot, I’ll probably take it and leave the handicapped slot for someone who “REALLY needs it!” 🙂

      • jen-cueva

        Member
        July 27, 2022 at 12:50 pm

        LOL @brendad53, isn’t it funny that we need it most days and think like that?

        Here is my new column; it was published today. Give it a read, and let’s talk about it.
        How a Friend Inspired Me to Be Proud of My Disability

      • brenda-denzler

        Member
        July 27, 2022 at 1:25 pm

        Loved it! I left a comment below the blog.

      • Colleen

        Member
        July 26, 2022 at 9:25 pm

        @jenc oh yes, we often did that too…take a spot close to handicap parking if available. My husband used to have a placard because of his fused ankles from his car accident in the Navy. To this day he can barely walk yet even he would rather give his spot to someone else. Funny how we always think there is someone far worse of than us, and maybe that is true but it doesn’t make our own battles less worthy of recognition and assistance.

      • jen-cueva

        Member
        July 27, 2022 at 12:54 pm

        Oh no, @colleensteele, that’s too ironic that Brian also thinks the same and does that. Yes, you make such an important point.

        “there is someone far worse of than us, and maybe that is true but it doesn’t make our own battles less worthy of recognition and assistance.”

        Well said, or written. But how many of us have this mindset? My hubby and daughter always ask me what I’m doing and remind me that I, too, am disabled and need that spot. Because I’m younger, I’ll give up a spot if an older person needs it, too. Maybe it’s the nurse in me; I also tend to ask them if they need help when shopping, etc.

      • jen-cueva

        Member
        July 26, 2022 at 10:51 am

        Well said, @colleensteele! Your thought on this topic is similar to my column coming out tomorrow.

        Like Cullen, I may think I’m superwoman when I arrive. It’s after a shopping trip or doctor visit when I am done for the day band need it most.

        We get questioned and stared at all of the time, even with my oxygen and using a wheelchair at times. As you said, our health is a priority, not others’ feelings.

        I bet at Cullen’s young age; he was one not to want to use it. I understand that on many levels.

        If you ask him today, do you think Cullen would say he was disabled pre-transplant? Thinking of y’all and sending extra prayers as he sees his nephrologist today.

    • jen-cueva

      Member
      July 26, 2022 at 10:46 am

      Hi @brendad53, I can so relate to your feelings about the disabled parking placard. Stay tuned to read more from my column that publishes tomorrow. I bet you’ll find yourself shaking your head a few times.

      The placards and plates helps especially when there are no other parking spots unless it’s a mile away. I’ve had that happen at Walmart and Whole Foods and drove around about 10 minutes before I finally found a spot. most days.

      These struggles are our reality. Thanks for sharing your thoughts about this topic. Brenda, I’m proud of you for getting that paperwork, now send it off to the DMV.

      • brenda-denzler

        Member
        July 26, 2022 at 8:15 pm

        You announce when you have a new column out?

  • brenda-denzler

    Member
    July 27, 2022 at 1:31 pm

    I have another issue to bring up, in these few days that are left in Disability Pride Month: the moral valences of being disabled.

    Do peoples’ reactions to others who are disabled have any sort of implied or explicit moral judgment behind them?

    For instance, parents of children who are rather severely autistic are often assumed to be “bad parents” when their children have melt-downs in public places, like grocery stores or parks. Other adults judge the parent to be ineffective or too permissive, and give unsolicited advice about what they “ought to do” to make their autistic child behave properly.

    Children who suffer from medical treatment-related trauma (mPTSD) are often thought to be spoiled brats and their parents are thought to be too indulgent and are often told to “get your child under control” when the kid is freaking out because of something happening in a medical setting.

    Autism and medical PTSD are disabilities. I’m sure that similar judgment-based comments about/to people with disabilities occur with PH as well. Any stories anyone can share?

  • jen-cueva

    Member
    July 27, 2022 at 2:02 pm

    Thanks so much for your feedback, @brendad53. I’m happy that you enjoyed my column this week.

    About your questions related to Autism and medical PTSD, you’re correct. Other people often judge us, make assumptions, and offer unsolicited and often insensitive advice.

    On my flight back home to San Diego from visiting my mom in March, there was a young man who appeared autistic to be by his behavior. His mom was trying so hard to quiet him when he would start yelling. I noticed some people gawking and whispering. I felt so bad for him and his mom. We off-boarded to the plane around the same time. I told his mom that I noticed she was doing a great job at trying to keep him busy during the flight. She said it was his first flight and thanked me.

    Yesterday a PHriend shared a story when some have offered her crystals, and that’s all she needs to be healed. People assume I’m a smoker because I’m younger than some they see using oxygen.

    Medical PTSD and anxiety are also disabilities. These are often overlooked and have been dismissed by not only the general public but healthcare providers. As your examples show, we continue to need so much education on disability and invisible disabilities at that.

    I think we learn our manners as a young child and not to say anything if it isn’t nice, well many have forgotten those teachings, it seems.

    I shared many different scenarios, but yes, you are undoubtedly correct.

    • brenda-denzler

      Member
      July 27, 2022 at 2:11 pm

      Argh! Alternative medicine. On the one hand, I support a fair amount of what is considered “alternative” ways to deal with health issues. On the other hand, being cured by crystals is not one of the ways! I got a lot of that kind of thing when I was diagnosed with cancer, too.

      You mentioned smoking. Yeah. I’ll bet that’s a common judgment people make when they hear someone has PH: they must have been smokers and they brought it on themselves.

      I had a long-time friend tell me, after my cancer treatments, that I’d brought it on myself because I allowed myself to become overweight and I had poor life habits. He had spent his life eating healthy, exercising, staying slim, etc., so that HE would never have to deal with the world of medicine and Big Pharma like that. Eighteen months later he sent out a mass email saying he’d been diagnosed with Stage III colon cancer. In his case, however, he thought his cancer was a matter of bad genetics–not that he’d brought it on himself like I had.

      Some people.

      • jen-cueva

        Member
        July 28, 2022 at 11:16 am

        Hi @brendad53, I am ok with some alternative medicine, and I try to have a mindset of “to each their own.” But when they shove that in my face is where I may draw the line.

        Aww, I’m sorry that your friend made those insensitive comments when you were diagnosed with cancer. That’s so hurtful and not true at all. And, who says that? I know…some people.

        But, I hate that he was later diagnosed with colon cancer. But his thinking then changed. I’ve found that often it happens like this. When others are confronted with the same or similar struggles, it’s a different explanation. The sad part is that you both had cancer, and those words were painful for you to hear, especially from a friend.

        My hubby had to have emergency stents while riding his bike over 20 miles at a time. He was training for the MS 150 from Houston to Austin, which happened shortly after the event. His late grandfather died at 60 of a heart attack while doing his morning run that he had done for years. Manny, my hubby, says he will work out when he feels like it and enjoy life. Those things don’t matter as most think. He wants to enjoy his pizza and beer more often than I think he needs it, LOL.

        Life happens; our plans are made for us, is my thinking. I know we all have different views. And, for the record, I’m not saying to have healthy habits; I’m saying enjoy life and live a little, too.

        Still thinking about those comments your friend made hurts my heart. I’m sorry, Brenda.

      • brenda-denzler

        Member
        July 28, 2022 at 5:41 pm

        My friend never did recant his estimation of why I got cancer as compared to why he got it. I took the high road, when he was diagnosed, and did not remind him of what he’d said to me. However, I take the low road often and tell this story on him, over and over!

        I hope Manny keeps his health status under careful, regular review. But I’m with him and you: Be as good as you can be, but don’t obsess. Do your best, and leave the rest.

      • jen-cueva

        Member
        July 29, 2022 at 11:14 am

        Good for you, @brendad53, for taking the high road and not doing the same to him. But telling the story will help others realize that some people will never get it. Many have also experience scenarios similar to this.

        Yes, you know I keep on Manny about staying in check with his health. I worked in nursing, so of course, with him, I am quite
        a “nagger” and call and make him an appointment for any little thing. I know someone else here who does the same. But I’m not calling anyone out (clearing throat) – @colleensteele and others.

        Yeah, @brendad53, I love this! “Be as good as you can be, but don’t obsess. Do your best, and leave the rest.” This weekend Manny will get his beer and pizza, LOL.

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