It’s Disability Pride Month — But Not for Me

It’s Disability Pride Month — But Not for Me
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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 www.themswire.com.

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 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 Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Ed Tobias is a retired broadcast journalist. Most of his 40+ year career was spent as a manager with the Associated Press in Washington, DC. Tobias was diagnosed with Multiple Sclerosis in 1980 but he continued to work, full-time, meeting interesting people and traveling to interesting places, until retiring at the end of 2012.
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Ed Tobias is a retired broadcast journalist. Most of his 40+ year career was spent as a manager with the Associated Press in Washington, DC. Tobias was diagnosed with Multiple Sclerosis in 1980 but he continued to work, full-time, meeting interesting people and traveling to interesting places, until retiring at the end of 2012.

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14 comments

  1. Ben Helps says:

    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.

  2. Janette Murphy says:

    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.

  3. Sue who? says:

    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!

  4. Nancy says:

    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 says:

      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.

      Ed

  5. Danielle V Liptak says:

    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 says:

      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.

      Ed

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