It’s Disability Pride Month — But Not for Me

Ed Tobias avatar

by Ed Tobias |

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July is Disability Pride Month. Now, don’t slam me right away for writing this, but I don’t think we need a month highlighting disability pride — just like I don’t think we need a month in October spotlighting that we have rare diseases, especially because to me, multiple sclerosis isn’t rare. (More than 2.3 million people have it worldwide.)

Disability Pride Month seems to have started as Disability Pride Day, which was highlighted by a parade in Boston in 1990 celebrating the passage of the Americans with Disabilities Act. The parade has been an on-and-off thing in several cities since then. Disability pride appears to have switched to a capitalized month in 2015, when the mayor of New York City declared it to be so.

My colleague and friend Kevin Schaefer, who has spinal muscular atrophy, has written about Disability Pride Month at the SMA News Today Forums. Kevin writes, “This is a time to celebrate people with disabilities, and to advocate for a more inclusive world.”

I love ya, Kevin, but I don’t want my disability celebrated, and it certainly doesn’t give me any pride. I’m proud of my kids and my grandkids. I’m proud of the 2019 World Series champions, the Washington Nationals, and (usually) of the work that I do. People might be “Boston Proud,” but I’m not “MS Proud.”

Disabled World says, “Disability Pride has been defined as accepting and honoring each person’s uniqueness,” but it doesn’t say who defined it that way. The Merriam-Webster Dictionary defines “pride” as “inordinate self-esteem” and discusses it as being a “state of excessive self-esteem.”

Can’t we find a word better than “pride” to describe how we feel about living with a disability? Do we need a day, week, or month to advocate for a more inclusive world? Shouldn’t we all be doing something every day to try to accomplish that?

There’s another word that I’d like to see stricken from the disability lexicon. Please refrain from using the word “fight” to describe how I handle my disease. I don’t “fight” with my MS. We may arm-wrestle once in a while, but it’s never a fight.

I never want to be described as “battling” my MS, and someday far in the future I hope, I definitely don’t want to be remembered as having “lost his battle with multiple sclerosis.” I live with my MS. And that is something that I’m proud of.

You’ve invited to visit my personal blog at


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Cynthia avatar


Well said ! Thanks

John McCann avatar

John McCann

Really well said. Stay safe.

Denise Casey avatar

Denise Casey

I agree with previous comments, Ver Well Said! Thank You for sharing your feelings with us.

Bill avatar


I agree. Thank you, and well stated.

Ruth Hoham avatar

Ruth Hoham

I appreciate your thoughts - I agree that we are not “at war.”

Ben Helps avatar

Ben Helps

Well said indeed. Far be it from me to take it away from those who need the notion of a fight, a battle, of being a warrior, but for me it's more just adjusting to the "the new normal" and moving on with life. I feel lucky in it that my symptoms aren't yet what I consider severe, and it hasn't started hitting me until I'm approaching my 50's, so I've got a bit of living under my belt.

But I can understand for those majority of MS people who are statistically young females, who haven't even settled in family, career etc yet, or that don't have good famly/friends support, that they may need to see it that way to keep strong in themselves.

Ed Tobias avatar

Ed Tobias

Good point about younger folks, Ben. Thanks for making it.


Janette Murphy avatar

Janette Murphy

I agree wholeheartedly. Words such as battle, fight, etc are not life-giving words, and I never think of my MS (or my Diabetes and Coeliac Disease, for that matter) in those terms. Like you, Ed, I am proud of how I have accepted and manage this new addition to my life, but am not proud that I have MS. That is just weird!
Thank you, Ed, for writing this article, and I’m sure it has touched many, like myself, who are struggling with the daily unknowns of MS, and wish to feel proud of themselves as human beings - without being proud of the condition that provides daily issues to be addressed and managed.
Great article. Thank you.

Sue who? avatar

Sue who?

To truly appreciate the Americans with Disabilities Act & more importantly the Enforcement of it you absolutely must watch the Netflix documentary “Crip Camp”. The challenges these disabled revolutionists overcame, their sacrifices & persistence is amazing & for me, truly humbling. My MS symptoms started in Nov. 2006 @ the age of 44 by 2010 I was wheelchair dependent with secondary progressive MS. I’m currently considered paraplegic with quadriparesis (pretty much down to one somewhat functional limb) & have what I refer to as the disabled abdominal trifecta (Baclofen Pump, suprapubic urinary catheter & a colostomy). I live by myself with an aide twice a week for showers (the frequency Medicare will cover) and an RN every other week for a catheter change. I pay for a housekeeper every other week and a lawn guy to keep my grass mowed & also to shovel my driveway in the winter. The amount of energy & patience I expend to function daily quite often feels like a battle. But my late father coached high school football for 53 years, my 7 brothers all played football & back in my heyday I was a cheerleader so I tend to think of it all as an epic gridiron rivalry, my limited bodily function versus my expectations/goals for the moment/day. Besides, after watching “Crip Camp” I know that those heroes who participated in the disability revolution fought the real battles & all of us who came afterward should be so very thankful for their efforts & sacrifices. I felt embarrassed for not knowing the history of how the Americans with Disabilities Act came about & now try to advocate for the documentary as much as I can. Please watch it! It’s so powerful & inspiring!

James Tylee avatar

James Tylee

I AM proud of my disability. Sorry you’re so sad. If I wasn’t disabled, I wouldn’t be half the man I am today.

Nancy avatar


While I agree MS is nothing to be celebrated, the ADA is. People fought hard for that. Justin Dart was a pioneer of this hard act and coudn't even take part to celebrating it because curb cuts weren't mandatory at the time. While we have a long ways to go, it's much better than it was back then. I'm an activist for accessibility since I still can't get into doctor offices and find bathrooms aren't accessible for wheelchair users. I couldn't understand the mentality of people not trying to keep furthering the fight to promote more accessibility but here I see you saying this. You are entitled to your opinion but if you are a wheelchair user please by all means crawl up steps instead of using curb cuts and pee your pants instead of using the accessible stalls that you take for granted. I'm tired of everyone expecting that these things magically appeared out of businesses doing the right thing. They didn't do the right thing because they wanted to. They did it because they had to because of that act.

Ed Tobias avatar

Ed Tobias

Hi Nancy,

Thanks for your comments.

The ADA is, of course, worthy of celebration. I applaud the efforts of those who fought for it and who continue to fight when it's threatened.

My simple point is that I don't need a parade or a proclamation to celebrate me or my personal efforts to live with my MS, and that's the perception I have of some of these events.


Danielle V Liptak avatar

Danielle V Liptak

Wow,to me this reads that you have a lot of internalized abelism. I get it, I used to be that way. I hope you can one day be proud of the disabled person you are and the accomplishments that you have achieved thus far despite the world being inaccessible. If you have never faced discrimination as a disabled person or don't believe the world is inclusive, then please respect that this is not true for everyone. Maybe you are more privilege than some, maybe not. Either way, I think you are missing the point of disability pride, it is not celebrating the disease but the person who has the disease. The person who goes through life and has to fight for their right to treatments and autonomy. I think you need to do some more research about the disability movement. If you haven't seen a movie called Crip Camp, that would be a good place to start.

Ed Tobias avatar

Ed Tobias

Hi Danielle,

Thanks for your comments.

My point is that, personally, I don't need or want to be "celebrated" because I live with a disease. For four decades I've faced discrimination, I've had difficulty accessing buildings and crossing streets and, generally, going through life. I'm grateful for the efforts of others who have made life with my MS easier than it might have been otherwise and I applaud their efforts. But I don't need anyone to applaud mine.

I've heard about Crip Camp and had intended to give it a look. Thanks for the suggestion.


Susie avatar


Maybe think of it like how we celebrate birthdays. It's a day to stop and think, and honor "I was born!" It can help us view growth and any changes we might have witnessed in the past year leading up to that day. Perhaps pride (with it's association with the seven deadly sins) can have a negative connotation, so call it whatever speaks to your heart. It's like how we may substitute "God" for "inner spirit" based on our own religion/spirituality... While some may argue it's the same thing. And I agree about saying "fighting" my I'll was. I have always substituted that word with "managing" instead. It's a more neutral depiction. It is what it is. However, the idea of taking a month to honor the growth I have made with the diagnosis in my life is entirely for my own self-esteem. (Which I definitely need). We've been through a lot. It's great to have a moment to share that pride in our capabilities despite hardships we may have faced.

Leanne Broughton avatar

Leanne Broughton

i just wrote in Jennifer Powell's column remarks that it isn't somethinģ I feel proud of, it is an afflication and I was the unlucky one. Pride is something you feel over a success or achievement, something special. The word pride does not fit.

Ed Tobias avatar

Ed Tobias

Hi Leanne,

Thanks for sharing your thoughts. I feel pride in how I've handled my MS over the years but, as I wrote, I don't feel the need to share that pride during a specific set of days once a year.



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