Disability pride is a tricky concept for me to relate to
None of us choose to have MS, so how can I be proud?
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I almost didn’t write this column. It might be a sensitive topic, but I’m not afraid of offending anyone. Even if I do, it’s not intentional.
It’s not that I don’t understood the subject, either. I think I do, but I’ve been having a lot of trouble putting it into words. Here goes: This month is Disability Pride Month, but I’m not proud to be disabled.
If “deserving” is even the right word, I deserve to be called disabled. Everyone with multiple sclerosis (MS) does, even if the disabilities are invisible. Our disease may not fit the definition of rare, and we may not have been born disabled, but the reality of our disabilities is inescapable. What’s also inescapable is that none of us chose this, so how exactly am I supposed to be proud of being unlucky?
To me, being proud of something means I’m responsible for it. I’m proud that I passed the selection process for the U.S. Army Special Forces. If the powers that be had just handed me that qualification or assigned it to me at random, I wouldn’t have that same feeling of pride.
I suppose you could argue that I exposed myself to the environmental triggers possibly linked to MS, but the disease and its resulting disabilities feel as though they were assigned to me at random. I’m not happy about it, nor am I proud. If I were, I doubt I’d put any effort into overcoming them via therapy, medication, or just plain workarounds.
Some might say there’s pride in not giving up or letting my disabilities get the better of me. I guess there is an alternative to not giving up, but it’s not a choice for me. If I considered it a viable alternative, I suppose I owe an apology to that woman at the grocery store who congratulated me for “getting on with life.”
How the ADA fits in
I’m not proud that I’ve accepted multiple sclerosis, either, because I’m not sure that I have. I’ve accepted that I have this disease and the limitations that go with it, but I don’t accept it as normal, nor do I expect anyone else to. Do I accept myself as a person and a member of society? Of course. Do I accept this disease and the many ways it has disabled me as normal? Certainly not. That isn’t normal. If it were, we wouldn’t need to raise awareness and no one would be working on finding a cure.
Maybe disability pride means simply not being ashamed. Although I’m far from embracing it, I think I can honestly say that I’m not ashamed of being disabled. It wasn’t always this way, though. As each disability went from invisible to visible, I tried to hide it as long as I could.
I still don’t like disability, but I’m not ashamed of it anymore. I’m proud of the people with MS who’ve helped me along the way, and I’m proud if anyone has used my example to find their own way to not being ashamed of their disability.
At the end of the day, it doesn’t really matter how I feel. Disability Pride Month is a celebration of the passing of the Americans with Disabilities Act (ADA). I’d always taken for granted that this law existed before my lifetime, but it actually was signed just 34 years ago tomorrow, on July 26, 1990. Every time I park in a handicapped parking space at a restaurant and maneuver my wheelchair up a ramp to the door, I’m reminded of the people who made it possible.
That’s what I choose to be proud of this month: the people with disabilities who worked to get the law passed and who continue to work to this day to make disabled life easier. I can be proud of people instead of my own limitations or the disease that caused them.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
Comments
Susana
Thank you for expressing my thoughts!
Benjamin Hofmeister
You are so very welcome Susana!
Jeremy Schuster
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.
Marjean Rickert
I was”gifted “ MS on my 27th birthday 🥳. That was 1987, 1 MRI in Denver, Colorado and only a strong dose of steroids. I have tried my best to hide all my disabilities because I was afraid I’d lose my job and get all the suggestions and cures.. I’m still hiding all I can, and I don’t like a relative who feels it is her business to tell people, unknown to me, that I have MS. I am not proud of myself, but I should be as we all should be. It takes a lot to live with this MeSs.
Benjamin Hofmeister
Thanks for reading Jeremy! I feel Pride for all those things too! Especially knowing that we did not give up or give in. Thanks for the great comment.
Michelle
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.
Benjamin Hofmeister
Thank you for that comment Michelle! You are the perfect example of the person that brings awareness two people with disabilities and their need for access. Yes, we are very fortunate to have the ADA in this country. You seem to be the kind of person that I like to say I'm proud of for bringing that about. Keep advocating and raising awareness and it will happen where you live.
Ian R
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.
Tom A
Oddly enough Ian, I may have done better with MS. Obviously would have chosen no MS. Can't compare the outcomers because one didn't happen.
Benjamin Hofmeister
Thanks for reading and for the comments Ian. When I could still walk with assistive devices, I was often Too Proud to use them and that Pride definitely went before all my Falls.
As to pre multiple sclerosis versus post multiple sclerosis lives, I find myself in a bit of a quandary. I am very grateful that I am home with my kids full time to help with homework and to go to sporting events. However, I am not grateful for the reason that I am. I'm not sure how my kids feel about it. I know they're grateful that I'm around, but I bet sometimes they wish their dad could throw a ball or run or wrestle with them. Another great example of the multiple sclerosis paradox.
Lisa Kandel
I pray for all with MS and other incurable diseases. May God bless you all!
Benjamin Hofmeister
Thank you so much Lisa!
Virginia
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.
Benjamin Hofmeister
Thank you for reading Virginia! I am so grateful to know that other people with multiple sclerosis feel exactly the same way I do.
Melissa
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😥
Benjamin Hofmeister
Thank you Melissa! No, You Are Not Alone! I wish none of us had this disease, but you're not alone and that means I'm not alone either.
Nora S.
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.
Ian
Nora,
We sing from the same hymn sheet.
The killer for me is watching rather than participating eg at my kids’ sports day. Or when my wife did the London marathon. Or when my wife and daughter went to a safari in Kenya (I stayed at home). The losses are incalculable. I envy my friends who were ill but recovered eg after a heart op, or a cancer diagnosis. The MS societies show smiley people in wheelchairs, or suggest doing puzzles to keep your brain active! Heaven knows where all the research funding has gone over the last 50 years as I still see young MSers at my clinic appointment in wheelchairs. I miss my old life and friends (tennis friends, scuba diving friends) so much. Best wishes. Ian
Benjamin Hofmeister
Thank you for the comment Nora. I think at one time or another I've had Every. Single . One of those feelings. I do prefer answering the questions of little kids to answering the questions of adults. I think it's because kids ask with genuine curiosity and not out of morbid curiosity or worse, pity.
Cheryl Lynn
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.
Benjamin Hofmeister
Thank Cheryl! Like you I am so proud of friends and family that have stepped up to accommodate my various disabilities. I still struggle sometimes with being helped, because I was always the helper.
Georgia Pinson Joy
What you penned is exactly how I have felted about MS since my diagnosis in 1996 with RR MS.
Thank you! Georgia
Huntsville, Alabama
Benjamin Hofmeister
Ah, Huntsville! My oldest graduated Space Camp in June and I bought my wife's engagement ring at Bridge Street 15 years ago.
Thank you for reading and for the great comment Georgia!
Julia huiskens
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. 😤
Benjamin Hofmeister
Thank you for coming Julia! I think it's probably just human nature to say things like that and for the most part, I would like to think that people don't mean anything negative by it. However, I'm with you, when I hear the word fight it implies to me that if I am not winning or overcoming, then obviously I'm not fighting hard enough. I think there is an ingrained needing people to believe that if they were in our circumstances then they could do it better or work hard enough to overcome it.
Sasha Gordon
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.
Benjamin Hofmeister
You are so right Sasha! I'm very proud of the people who came before the ADA and worked so hard to make disability acceptance and rights a thing. I'm proud of this people who are still working to this day. I'm proud of friends and family and even of myself when my disabilities and limitations are accepted and accommodated. I'm just not proud of having anything about me that has to be accommodated. For example, I'm proud of my young children every time they open a door for me, but I'm not proud of why they have to.
Rob Mullins
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.
Benjamin Hofmeister
Thank you Rob! The word definitely gets over used and you're right, it's probably a little less effective because of that.
Nancy
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.
Benjamin Hofmeister
Doing your best despite limitations is definitely something to be proud of! Thank you for reading and for commenting Nancy.
Tom A
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.
Benjamin Hofmeister
Thank you! I am always so thrilled to read your comments. Yes, it would be odd to be proud of having a disease. Best yes is still a combination of genetic predisposition and exposure to a triggering event, so inadvertently I may be, at least partially, responsible for my having MS. I still take no ownership for the diseases itself, so there's nothing to be proud of, in my mind. Like you I do take ownership of how I live my life and how I conduct myself with the disease. I'm certain I've had my share of shameful moments but overall I am very proud of that.
Trish Nafotz
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.
Benjamin Hofmeister
Thanks for reading Trish! I don't like it when people talk to who I'm with rather than directly to me either. I'm not exactly sure why that sometimes happens. Even if the last person they might have met in a wheelchair was nonverbal, our similarities began and ended with the wheels on our chairs. Maybe they see all the buttons on my chair and it's just assume one of them is mute.
Graham Coles
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.
Benjamin Hofmeister
Exactly! I am proud of all of us that made the choice to get on with life. A life with multiple sclerosis.
John E.Pierce
Needed to be said. Thanks Mr. Hofmeister.
Benjamin Hofmeister
Thank you for reading and for the comment Mr Pierce. (Mr Hofmeister is my father). I don't know if it needs to be said, but I sure needed to say it.
Mike Purcell
Interesting perspective. Thanks for contributing.
Benjamin Hofmeister
Thanks for reading, for the comment, and for the compliment Mike
Rob'sMom
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.
Benjamin Hofmeister
Thank you so much for sharing all that. I was diagnosed when I was 39 but started having symptoms when I was 34 or 35. The first years were definitely the hardest even though my disability has increased significantly since then. The adjustment pays I went through was very difficult and sent me into a very dark depression. I felt like the disease was not just taking my physical abilities, but all the ways by which I identified myself too.
One of the most important lessons I learned and that I think would benefit Rob too is not to compare myself to other people with multiple sclerosis. I have had a very aggressive Progressive of course and do not represent the general population of people with multiple sclerosis. In short, no one should look at me and think that that is the future that MS has in store for them.
A support group for MS was key. The problem is finding the right one for you. I think support groups can be as individual as everybody that has this disease.
janet mackie
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
Benjamin Hofmeister
You're very welcome Janet! I don't know how I'd react if someone called me "plucky". Fortunately, no one's ever described me like that lol.