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How Do You Feel When Others Refer to You as Disabled?
Those of us within the PH community often have invisible disabilities. If someone looked at us on a good day, they might think we are healthy and vibrant (if not hooked to O2 or using a wheelchair, etc.). But, if they could look inside our bodies, they would see we are sick or have some disabilities.
Have you heard of the term, ableism? Do you have internalized ableism?
But some prefer to keep their PH and disabilities hidden. How do you feel when others refer to you as disabled? Do you refer to yourself as someone with a disability? Let’s talk about this.
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36 Replies
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@jenc your question reminded me of an uncomfortable situation Cullen was placed in when he was in 8th grade. His class toured the WA state capitol. A politician (I honestly can’t remember who) spoke to the class.
Cullen was very ill at the time and listed for transplant, so we had him in a wheelchair. The politician locked eyes on Cullen and it was so obvious she wanted to use him for pictures. She made a few comments directed at Cullen, basically implying that he is handicapped, and asked for a picture with him.His classmates were trying so hard not to laugh. His best friend talked him into standing up and when he did…the look on her face! She “assumed” he couldn’t walk. She didn’t bother to ask his story, and when she saw him stand up, she still didn’t ask his story.
Again, he was on a rapid decline and you could tell by looking at him that he was very sick but I don’t think it ever occurred to the woman that is why Cullen was in a wheelchair.
We laugh about it now but at the time Cullen was embarrassed. He just wanted to be one of the students but instead he was singled out as “different”. Not cool, not cool at all!
But his classmates were awesome! They had him laughing about it on the bus ride home. It made their day when he stood up!
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Aww, @colleensteele, I hate that Cullen endured that experience. But, I would have loved to see the look on that politician’s face when he stood up. People can be so judgemental. And, we thought kids could be mean. I find adults more often than kids are far more insensitive to this.
Although, I can’t imagine how difficult it was for Cullen and our other PH kids at such a young age. It breaks my heart. But for Cullen, I love his friend’s support.
Do you think Cullen would feel upset if someone referred to him as “disabled,” even pre-transplant? I cried the day I got my accessible parking permit and my oxygen. As a young adult, I felt that made me different, and I worried about what others would think and say.
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Never thought of myself as being disabled or have been called that. Folks have asked how I am feeling. They think of me as a normal who has had some medical problems as many people do. I have known people who were in real bad shape with cancer or other major things in wheelchairs etc. Don’t think they were ever considered or called “disabled”. Then again I live in a different world than most folks on here.
Got a friend who lost her leg just below the knee last year. She knows every “peg leg” joke you can think of. She and her husband just got a new puppy……we tease her about putting her leg up high at night so the puppy doesn’t chew it up. She is always coming up with something funny about her leg when meeting new people to break the ice. I am sure she would prefer to have her real leg back, but is sure having fun with what she has.
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Hi @wheeldog, I can imagine that things in Alaska are different from here. But when you talk about your friend with an artificial leg, you mention how she copes with jokes and laughter. I find many around the world cope with things using humor.
Thanks for sharing your perspective and how you feel others in your area discuss these topics. How are you and Mary Ellen enjoying Arizona? Will you be headed back this month or next?
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Hi @wheeldog, I can imagine that things in Alaska are different from here. But when you talk about your friend with an artificial leg, you mention how she copes with jokes and laughter. I find many around the world cope with things using humor.
Thanks for sharing your perspective and how you feel others in your area discuss these topics. How are you and Mary Ellen enjoying Arizona? Will you be headed back this month or next?
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Hi @wheeldog I have been thinking of you too. How is the home care lung draining going? I hope it is working out well for you.
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I am going in the 17th to get it checked out. Gonna get a sonogram and x-ray. The volume of fluid is going down every time I drain, which is on a weekly basis now. Was only 30ML last time. The nurse on my last phone check up a couple of days ago is talking on taking it out.
I figure it is one of 2 things. Either it’s true I don’t need it anymore from lack of fluid, or there is some kind of blockage in the tube some place???
In the past I had too much blood. If my HCT was over 50 I had to get a pint drawn off, if over 55 I got 2. I went in every month to get it checked. I always got 1 drawn off and a couple times got 2.
Nobody could figure out why it was happening…….just like the fluid in my lung. With CLL my red blood cells are supposed to be too low, not high. That went on for a couple of years…….then all of a sudden it quit. It was 2 years last Feb that I quit getting my blood drained. My HCT has been in the high 40’s since.
When I get these rare “conditions” my body doesn’t play by the rules. Not sure why??? I sure have baffled a lot of doctors.LOL The blood thing fixed itself and hopefully the lung thing will too.
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Hehe, @wheeldog, I know it’s not fun to not have your body “play by the rules” with these rare diseases, I relate. My PH doctor often tells me that I am not going in the usual progression, reactions, etc., as others. That’s what makes us rare.
But, on a positive note, I’m happy to hear that the fluid has been less each time. How are you feeling about your shortness of breath since they placed the tube? Have you noticed any changes?
I’ll be at UCSD on the 16th. I think I now recall you were going to be there that Thursday.
Crossing my fingers that this too will resolve on its own, as you mention. Please keep us posted and let us know how we can support you.
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My appointments are on the 17th at Hillcrest. I am about the same as far as breathing goes. Got a video appointment with my oncologist the next day. Then am supposed to get a phone call from the PH doc when the test results get in.
With the rising fuel prices we are anxious to get back home before they get way worse.
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Hi @wheeldog, I hope all goes well with your appointments this week. Yours is on St.Patty’s day, so that should be a lucky day, hehe.
Yes, those gas prices will not get any better for some time now. With you and Mary Ellen driving back to Alaska, that must be worrisome thinking of that extra financial burden. Are y’all planning to head back after this week is over?
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We plan on heading home as soon as possible. However, I need to take care of my health first. Not sure when my next appointment is. Got to work it out with Elizabeth.
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Hi @wheeldog, I hope that Elizabeth can get your in shortly. I’m happy that that tube is out, but sorry to hear about the possibility of more tests. Do you know which ones that will be yet?
Take care of yourself, and please do keep us posted.
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I have appointments Friday the 25th. Going to do a PFT test, 6 minute walk and a CT scan. They already have my Right heart catheter test, guess it just got there from Alaska.
Then we are going to head back to our place in AZ, pack things away, and head home.
Dr Yang is going to do a follow up by phone on April 4th.
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@wheeldog do you have a wee bit of the Irish in you? If not I’ll send some of my Irish luck to you on the 17th. Let us know how things go.
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I am 1/2 Irish…….don’t know if I was lucky or not. Got my tube taken out due to not much fluid. All my other tests came back normal. They are not sure what my problem is. Got to go back for more tests.
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Actually the point of my post is you can be whatever you want to be. What ever label that floats your boat go for it. Everyone has the ability to control their own mind. You can put yourself in any frame of mind you want to be……as in happy, miserable or anything in between. Most folk like being in a happy mood while others seem to enjoy being miserable…….go figure. From what I understand being in a good mood is supposed to be “good medicine” while being bummed out isn’t so good. I say to each their own.
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Well said, @wheeldog; it is all about mindset and our perspective. Despite what life throws our way, we can choose to make the best of it.
You know, I have days when I’m sad or hurt, but still, try and stay positive as much as I can. Some prefer to stay in another mindset. That’s their choice. Thanks for that reminder; enjoy a nice weekend.
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@jenc it takes a lot to make Cullen upset. Pre-transplant I think he would say something like, “I’m not disabled, I’m unabled”. Carrying a Flolan and Milrinone pump and oxygen made it really hard for Cullen to hide that he wasn’t doing so well. He often tried to do things with his classmates and friends. Some things he could do but often he was “unable”.
Per his doctor’s request, we did have and often used a handicap placard for Cullen, and he often really did need it. He would be fairly ok walking in to say, a store, but by the time we would walk out he would be in bad shape. When you can’t walk because you can’t breath can that be considered handicap? Considering how grateful Cullen was to have the placard then I would say, yes.
There have been times post-transplant when he hasn’t been defined as handicap but it’s been assumed he still can’t do things. That does bother Cullen a bit because he fought so hard to get to the point that he could do things he once wasn’t able to do. He’ll just adamantly say, “I can!” and go do whatever it is.
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You know, I figured that was true about it taking a lot to upset Mr. Cullen, @colleensteele, But I can’t imagine how things have flipped for him pre and post-transplant.
However, I doubt that he continued pushing himself and being as “normal” as possible. He has an amazing, loving, strong mom to set an example.
I love that “I can” attitude and doing whatever he wants to enjoy more now.
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As far as disability goes, I have a hangtag and I need it. When I got my new license, the lady asked if I just wanted to get a handicapped license plate and I said “no”. I told her somebody might think I am disabled……As far as attitude goes – I figure I can until I can’t……
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@upshtcx I can until I can’t is a good attitude to have. Does thinking like that help you enjoy the present more? Worrying about the future has always been a mental struggle for me especially when it comes to my son.
My dad has gone through cataract surgery. When all was said and done he was happy he went through with it. How is your vision since having it done?
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My vision is better. They did not want to sedate me at all so I am glad it is done. When I say I can until I can’t, it definitely helps my attitude. None of us know what our limits are on a daily basis. So I take it one day at a time. Some days I can do more than others. Worrying about the future is always a struggle. I had to have a way to answer people’s questions as well as my own. I just tell people that I could go tomorrow or that I might be here a few more years. I actually got on a ladder yesterday to fix something. I did not know if I could even make it up one step but I made 2 which was just enough to do what I needed to do. Every day, I do what I can do and I try not to be hard on myself on bad days. I really leave the future in God’s hands and do my best to do my part.
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@upshtcx I admire your attitude. Glad to hear your vision is better, especially considering what you went through without sedation!
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Thank you, Colleen. Your son is so blessed to have a mother like you.
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@upshtcx thank you so much for saying that! I feel blessed to have a son like Cullen who hasn’t allowed the bad cards he has been dealt ruin his zest for life. You sound a lot like him.
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Thank you. I worked with really sick kids for so many years. Sometimes they were so strong. Kids live in the moment. I think that is a gift. Today is St. Pats Day. I came from a large red-headed Irish family on my dad’s side. My grandmother died when I was in my early 20’s. She was weak and sick my whole life. She laughed right up to her last breath with a huge family at her bedside. To this day, I always smile when I think of her.
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@upshtcx it sounds like your grandmother was a remarkable person. You are honoring her memory through your own positivity.
What type of work did you do? I bet the experience was as inspirational as I’m sure it was heartbreaking.
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Hi @upshtcx, I’m grateful to hear that your vision has improved, too. One big issue that Manny had was night driving, which has also improved some for him. Although, I prefer to be home at dark. I’m like Cinderella but turn into a pumpkin much earlier, LOL.
Your positive attitude and thinking certainly help you get through the days. I love it, Jill!
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That was the 2nd eye so I am done. I can definitely see better.
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Hi @upshtcx, I also have the hang tag only. When we registered here in California, they asked me if I wanted it on my license plate. I said no. I use accessible parking when there is nothing close to where I am going.
Your “can do” attitude will get you far! How are you doing this week?
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I am fine. Had several procedures lately but did well. One was my cataract surgery that I have put off until I just had to get it done. Loved adding all those drops to my regular med schedule……..but totally glad it is done. Hope you are enjoying SD.
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Hi @upshtcx, yes, those ongoing drops are a bit to add. My hubby, Manny, had cataract surgery back in September/October. Thankfully he wasn’t already taking medications throughout the day. But I can see how this would be a pain to add to our med regimen.
Did you only need one eye done or both? Hopefully, you are noticing improvements since the surgery. Manny did well. How about you?
We are enjoying San Diego, thanks.
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I have typed out several comments yet haven’t posted any of them because I have so many feelings about this thought of being disabled. I am not disabled just limited to everything I am accustomed to doing, need help from others constantly and have turned my family’s life upside down. I’m not 65 so no medicare. I thought about applying for disability in order to get it early, but this bothers me. It would be admitting that I am disabled, and I don’t like that label. I am sick. Or am I disabled and in denial? Hmmm…so much to think about.
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I have so much to say about this matter, although I am not the one with the disease both my husband and my stepdaughter have/had it. It frustrates me to no end when people look at my husband like Wow really, when I carry the heavy items, the backpack or load the truck. He also gets looks sometimes at the store on days he need to use the electric carts… When he notices I try to nudge him and tell him Hey Babe I think your tractor’s sexy or something else silly.
My daughter and I had a much snarkier method of dealing with judgement. I remember my daughter and I were out and about once and she didn’t quite need her oxygen but she needed the electric cart and someone walked by and loudly said “it’s not a toy” so we replied louder “Maybe stupid people need to carry warning signs”. Our little kay was so frustrated with people’s looks and comments that sometimes she would carry her oxygen just to look avoid the comments. Being so so young and looking perfectly normal but being unable was hard… sometimes we didn’t make a snarky comment just stuck out our tongue’s.
Debbie don’t worry about the stigma if you need to file for disability, do it, it doesn’t define you! I would rather be disabled than judgmental or as Kay would say “its better to be disabled than stupid!” Trust me anything your family does for you, they don’t think your turning their lives upside down, they are happy to do it. But on that note caregivers are human too, and if we have a bad day its Not because of what You can’t do, its usually because we forget to take care of ourselves and then we get cranky and frustrated.
And to anyone feeling like your less because of a silly stigma : Your not less your MORE because Your still HERE and that is worth everything to those that matter! Do whatever you need to do to take care of yourself! I’m a grown ass woman and I still have no problems sticking my tongue out at someone crusting us off. If anyone ever needs me to come stick my tongue out at someone I am on my way cape and helmet with stickers at the ready!!
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@kygon I love everything you shared in this comment!
“Hey Babe I think your tractor’s sexy” made me laugh out loud! You and your daughter’s responses are funny but it’s sad they are necessary. My son was diagnosed when he was 8 and we have had our share of weird looks and thoughtless comments. Cullen has always been better at dealing with it then me or his brother. Whenever someone was giving Cullen a hard time we wanted to lash out but Cullen never let it get to him. He would hold us back and tell us it’s not worth it. All that mattered to him is doing what he needed to do to stay well.
@debbie I hope you will take a moment to reach what Ky has shared. Believe me when I say you are not alone with your thoughts and in some way, I hope that helps.
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Yesterday a colleague shared this thought-provoking article with me, and I wanted to share it here. The report includes a quiz on ableism.
The article reports, Research shows that unconscious bias against disabled people is common, but experts say it is difficult to recognize.
You can read the article and take the quiz with the link below. Please check it out, and let’s talk about it.
Ableist attitudesDid y’all agree with all of the least biased answers? Share your thoughts and your results on the quiz.
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