Disability pride is a tricky concept for me to relate to

Thank you for expressing my thoughts!

Maybe there are many different meanings of feeling pride. I feel proud not giving in to my illness. I feel pride that in the face of the unknown I do my best to look after my needs and those of my family. I feel that setting a good example for those that know me and my situation defines pride. In the face of an unknown future, I have a lot to be proud of in my present day. Creating a forum for open dialogue free from fear about MS might be some good that comes from our shared experience. None of my disease related limitations are visible. That said, I struggle daily. However I feel very fortunate to wake up and do my best. I believe that this approach has served me well for nearly 30 years.

I liked this article. I think that when you live in a place that has made it law, ADA, to see the disabilities and respect them and accessibility the focus can be a bit more inward. Where I live this is not the case. We do not have accessibility for all, we are excluded on many levels. So for this reason I am very proud to be disabled and I will continue to happily bring awareness till all are able to participate in life.

Pride comes before a fall. And MS certainly leads to falls. I’m not proud of having MS, the disabilities it had given me, or the limitations I have to work within. We either live with the increasing disability MS brings, or call it a day. Each to his / her own. I can’t believe anyone with MS would keep their MS life over their pre MS life. I think too many organisations have too much time on their hands and come up with campaigns and “awareness” months without really thinking it through. My aunt died of MS in her early 50s - a cruel long drawn out death and her future was robbed from her. She wasn’t proud of what MS did to her.

I pray for all with MS and other incurable diseases. May God bless you all!

I feel much the same way, while I am not proud of being disabled neither am I ashamed. I am proud that I have chosen to fight with the only tools I have, an MS medication and what exercise I can do. I am grateful to the ADA for the things they do to help me navigate in a different world.

Mannnn! I thought I was alone in thinking this way! TY for sharing. It's an evil wicked drown out disease and there NOTHING in its sneaky insidiousness I'm proud of! Mah Yah bless all infected😥

Why would I have pride in something I absolutely hate? I've hated MS from the first day I was diagnosed and I hate it even more 24 years later. I don't want to have it, I don't want to bore people with my symptoms, I wish I could throw my walker off a cliff and blow it up with dynamite, I hate people staring at me all the time, I hate little kids staring at me when I'm in that electric cart at the store. Parents never teach their kids not to stare anymore. I hate walking up to a door and having someone feel like they have to run to open it like it's a big emergency, even though I can open it myself, and didn't ask for their help. I hate that I have to smile and be gracious to people helping me, even though I don't want them to help me most of the time. Otherwise, they get mad. I hate the loneliness of having a disease, I hate that some people think I am faking my symptoms to get attention. I want to be the way I used to be, I want to go hiking in the mountains like I used to. There is absolutely nothing good about this disease and I hate that God for some reason thinks I deserve to have it. I don't. He can give it to someone who loves to talk about it and impress people with their symptoms. He can give it to anyone but me.

I think being proud of having MS is a strange way to phrase it. I knowledge that I have a MS and at this stage I think it has me. I think I'm handling it well, but I understand at times I don't. What I am proud of is how my husband helps me every day and my entourage of my kids and my son-in-law handles my disability so easily. That makes me proud.

What you penned is exactly how I have felted about MS since my diagnosis in 1996 with RR MS.

Thank you! Georgia

Huntsville, Alabama

And again, you found the right words to express what i also think about a topic. It makes my eyelids pptwitch and my toes curl. (?) Hearing empty, easy terms like "being proud", "own it", "ms-warriors", ",ms-survivors", "blessing in disguise" "makes me more grateful "... And you can proberply name some as well. No! Own whatever you like, in private please. Me, i can't find a silver lining. It's like you said, being proud means you had to have done something, actively. That's why i absolutely hate the term " fighting against". That implies you have any influence on this illness. All.i hear is; you "loose", you just didnt fought hard enough. You wimp. 😤

Disability pride, like other marginalized identities expressing pride, is to highlight that those communities are part of the larger community.

Look up ugly laws.

There was a time when disabled people were, by law, not allowed to be in public. So disability pride is not an individual acceptance issue. It is about making sure the dominant culture does not continue to neglect our needs.

Thank you for your thoughtful opinion.
In our culture, "Pride " has become a catch-all phrase. Because of the words' misuse, it has become at best meaningless, at worst, offensive. There are other descriptors for this garbage disease, pride is not one of them.

My feeling is that I addressed MS, part of me and yet continued with my life, my career. I learned to work with MS to do as well as I am able, just trying to do my best with my evolving limits. For that I am proud to have persevered, and continue to. It can be easy to give in, I try not to be complacent and find new ways of doing things.

As a licensed psychologist I’ve always been fascinated by the differing ways people handle their MS starting from the very beginning. (Keep in mind some people never accept a diagnosis). I keep in mind also the difference between PPMS and RRMS and how the challenge seems to be a bit different. Without MS, one can be asked if they are proud of the way they have handled life. Then add to that, are you proud of the way you have handled your life, with MS? I would expect the standard answer to be “sure”, and give reasons X, Y and Z. But if asked correctly, the answer comes only to one’s self, for their own consumption. I am proud of how I have lived, and I am proud of the way I have lived with MS. …(got plenty of reasons how that stacks up). I am not proud of MS, that would be weird.

To me it means not being embarrassed to go out, which I am. It means asking the dentist's secretary for the key to the only disabled accessible washroom which they never have, even though I don't relish announcing my urgency to everyone in the waiting room. It means explaining to the staff that even if I am in a wheelchair they can talk directly to me and not only to the person accompanying me.

I'm proud that I've chosen to experience MS and not battle it, suffer from it, or despise it. I limp along beside it. I get on with it. Pride often does come before a fall. I fell a few days ago. My hip still sends me twinges of unpleasant sensation as I move about my day. I'm not proud of the unpleasant sensations. However, I'm proud of getting on with life despite them. In this case, pride came after the fall.

Needed to be said. Thanks Mr. Hofmeister.

Interesting perspective. Thanks for contributing.

Rob was diagnosed 02/2023 at age 35. He keeps trying desperately to get a job but everything (EVERYTHING) seems to hold him back. Though some days I think he has accepted "it" most days he is still very angry.... i think that would become less if he could just get a job. But MS has affected his speech.... not his ability to say what he wants, just volume control and enunciation . He was in the HVAC business but now ladder climbing, hot places, dexterity, driving, all seem to be things that he shouldn't do. I'm at a loss to help him and though I offer up all these great posts, they can just be depressing knowing what the future is likely all about. He's very responsible and feels he is a drag on the family since he can't work and contribute Currently in the process of SSDI and SSI but as everyone knows, it is a long, long haul.

Great article, Benjamin. And Nora’s article said it all for me. I have had MS for 5o years (am now 80) and being told I am plucky or wonderful etc in dealing with MS makes me want to vomit.
Humour keeps me going and writing
Thanks for your column