Scrolling through the interwebs I learned it’s Disability Pride month (in NYC; so, basically, it’s Disability Pride everywhere because NYC is the centre of the uni, duh), and my stomach kind of flip-flopped, because even though I’ve had MS for 19 years, of all the identities I claim and am proud of, my disability feels like a pretty messed up status to throw a party hat on.
Also, parades are the worst. Even accessible ones. They’re boring; they’re full of children, there’s too much standing, fucking clowns, someone always throws up. I’m not putting on sunscreen to watch a 2-hour traffic jam whose soundtrack is a shitty high-school band. You know what’s worse than marching? Watching people march.
There’s a reason parades are free.
Thanks to COVID, I can calm down; because, at least for now, parades are canceled, except I don’t feel off the hook for participating in Disability Pride. I mean, these are my people, right? After 19 long years of living with MS, I owe it to the chronic illness community to figure out my feelings about disability pride. At the very least, I may discover an excuse to drink champagne. Do we get presents? Is there cake? I don’t know how these things work.
Wait, what? 19 years? How come you haven’t figured this out already?
My complete ignorance of the existence of past Disability Pride celebrations, for sure has something to do with the fact that disability visibility is still woefully lacking; but, it might also have something to do with the fact that despite living with some pretty disabling MS symptoms (pain, fatigue, spasticity, vision so low I can’t legally drive a car, and a bladder that only works with a catheter), for many years, I didn’t actually think of myself as disabled. I only occasionally use a wheelchair, and all my limbs are attached. MS was something I had (a disease). It wasn’t something I was (disabled), until I started to need mobility aids and people started asking “What’s wrong with you”.
Disabled was an excruciatingly difficult identity for me to accept.
Having an incurable disease versus having a disability might sound like semantics; but, to me, the distinction was huge, and I rejected the idea that I was disabled. Rejection, though, feels like the wrong word, because, really, I never even considered it. (Internalized ableism much?)
For whatever reason, denial seems to be particularly encouraged in people with MS. From the moment we’re diagnosed, we’re told not to let this disease define us. In response, we vow to never let MS change us. We tell ourselves, “I have MS but MS doesn’t have me”. We somehow think if our will is strong enough, we can simply decide not to become disabled.
And who could blame us? Culturally, we understand disability to be a very bad thing. Possibly the worst thing. There are people, lots of people, who believe that disability is a fate worse than death. We don’t define disability as different. We define it as less-than. So why would I succumb to a disabled identity, let alone slap on a sash and be proud of it?
Because those people are wrong.
If pride, in its simplest form, is a feeling of dignity and self-respect, maybe a little bit of a humble-brag for some of the things I’ve accomplished, then sure, sign me up for some pride. Easy-peasy. I have plenty to be proud of. But we’re talking about Disability Pride, and it feels itchy and uncomfortable to be proud of my disability when all I want to do is murder my disability. How can I be proud of something that diminishes me? That brings me to my knees? How can I be proud of the weakest part of me; the thing that everyone is afraid of, and afraid of becoming?
Being proud to be disabled isn’t about liking my disability. It isn’t about pretending that disability doesn’t straight-up suck. Rather, claiming disability pride is a rejection of the notion that I should feel ashamed of my body or my disability. It’s a rejection of the idea that I am less able to contribute and participate in the world, that I take more than I give, that I have less inherent value and potential than the able-bodied Becky next to me.
Fuck that shit.
Declaring my pride means that I don’t accept society’s definition of disability. Loving my disabled body is a radical act that can challenge the way people think about disability; one that promotes the idea that it’s normal to be imperfect.
Turns out there are lots of reasons for me to celebrate Disability Pride. But, in truth, I realize I must celebrate Disability Pride. Because, if I can’t be proud of my disabled life then I am contributing to the idea that disability makes me less-than. That’s a toxic message to put out into the world – one that diminishes others with disabilities and one that reinforces ableist institutions. Worst of all, it’s a dangerous message to give myself, and I think too highly of myself to do that.
Disability is part of who I am, and I am proud of what I’ve done with these circumstances. Disability pride isn’t about what I’ve lost, or what I can’t do. It’s a celebration of life, and a recognition that all bodies have value and deserve a parade with a high-five from Santa himself.
Disability pride acknowledges that I can do hard things; that I’m still here. Some days, that alone feels like enough to be proud of. So this July, I will slap on a party hat, pop open a bottle of the good stuff, and raise a glass to my broken body, and to yours as well. Happy Disability Pride, Trippers.
What are you proud of?
30 thoughts on “How To Be Proud Of What’s Broken This Disability Pride”
I am proud of my almost 30 year career since diagnosis. I have a husband of 37 years, two wonderful adult children, a home, gardens that I enjoy many hours in. I can’t walk for much distance and I can’t go hiking with my son anymore. MS seems to be getting the better of me this last year but I’m still here and getting the best I can out of the things I love.
Thanks for sharing, Jeanne. Sounds like a rich and full life!
I just discoverered your blog/website. Very informative….I like your posts! I was just recently diagnosed with MS (I’m 38).
Just curious, where did you get your cup holder for your rollator?? I need one! Thank you!
Thanks so much for following and commenting. Cup holders are tricky and have to be specific to your device. Which rollator do you have? I would check to see if the brand that makes your rollator also sells a cup holder. Please keep me posted!
I’m actually proud that I’m finally accepting my limitations and asking for help. Something that isn’t easy for me to do, at all! I’m trying though because people close to me have started getting annoyed at me. It seems they would rather get something for me or pick a dropped item up off the floor than pick ME up off the floor. Imagine that, accepting help without getting angry at the people trying to help you. Of course I’m not really angry at them, I’m really just mad at my situation not at them for trying to help me. This disease is so screwed up it’s hard for others to understand. Anyway I’m proud of that, if it makes sense to anyone.
Makes total sense to me.
Makes absolute sense to me as well, sister!!
Was there cake? I didn’t see any cake anywhere! Somebody better have got some fucking cake out of this shit show 😉 My low point in coming to terms with MS as a disability was hearing an interview with a swimmer competing at the Special Olympics (in my mind – where bona fide disabled people do sporty things), who was describing how her disability – MS – affected her. It was like a punch to the gut at the time. I had a DISABILITY. I was disabled. 8 years later and I’m embracing, loving, and very proud of the fact that I have fucking BRAIN DAMAGE and nobody I meet in an average day would ever know. Sometimes I stagger/lose my balance a little so I suspect some of them think I’m possibly a high functioning drink… Just be proud of yourselves. Whether you have a disability or not, you got yourself through some sort of shittiness I’ll wager. So be proud of you. Whatever that ‘you’ looks like today.
omg, I love this. My husband hates it when I say I have brain damage, but I feel like that’s bragging rights.
As for cake, it’s still July. Stay tuned!
Gah! Typos when I’m trying to be funny are the *worst*.
The Special Olympics are specifically for developmentally delayed persons. The Paralympics and Para Sports are for people with physical disability. It’s a very important distinction to those involved with both events. MS assassins would likely fall under the ‘Para’ umbrella, not the ‘Special’. Traumatic Brain Injury could actually be either.
Thanks for this clarification!
I never think of myself as disabled. I think that I have an incurable disease that does these awful things to my body. Yes, I have a disabled plaque, I have a car with hand controls. I am getting to the stage where I soon will need more than my simple cane.
Society gives the word “Disabled” a nasty taste. I am not un-able to do things. I just have to work harder or do them a different way than most.
You’re right. Society made disability a gross word. It’s up to us to correct the narrative.
You said it better than I could in my MS Wire piece on this subject but we agree…we don’t need a day, week, month or a parade to be proud, but we can be proud of how we live with our MS. I’ll raise a glass with you to that.
BTW, I love the picture of you with your “taxi” glove at Lincoln Center. But, I’ll bet it doesn’t do much good when you’re trying to get a cab in the rain. 🙂
Thanks for reading. I read your piece yesterday and really appreciated it. Who knew there was so much to unpack with this whole having MS gig.
hello .i am from England.disabled ..people never see the every day effects ,there views/judgements are very Snotty Nosed ,,i have m.e .migraines .ibs ,Allergies
i have BOTH Bladder and Bowel problems .i had a Catheter in for nearly two years . i am not afraid too say/not afraid too talk about it . i take part in a lot lot
twitter.supersnopper. i follow you
Thanks so much for putting it into words! I was diagnosed 15 years ago. I was well into my yoga teaching career thank goodness because that has helped me keep my balance (in more ways than one). I’m proud that I’m still teaching in spite of the fact that I can’t do.
Much gratitude for you expressing what I feel. I especially love your comments about parades. I’ve had a hard time understanding what’s so exciting about them haha!
I dub you my hero! I’ve had MS for 30 years and I only began to process that my life didn’t end because I’m disabled until a couple of years AFTER I had to stop working, almost 7 years ago. See how well you’re doing? Thanks for being a role model.
You are too sweet! Thanks so much for this generous feedback.
After 12 years of suspecting I had MS (my daughter was diagnosed 11 years ago) last August it was finally confirmed. I went from being very active to barely being able to clean my house. Your blog is helping me accept the fact that my life has changed but isn’t over. Thank you!
Thanks so much for reading. How frustrating that it took you so long to get a diagnosis.
You are such an inspiration!! Because you’re so beautiful, do you receive the comment from others with a quizzical look on their face”…..but you look so good..” At least that is one MS-related comment that I can just grin and bear!
LOL- “grin and bare.”
What am I proud of…hmmmm…I suppose I’m proud of saying; “NO, I’m not doing that” to those doctors who insisted I get a spinal tap 15 years ago when I was asymptomatic but my brain was not. At that time, 4 lesions where discovered on my brain by accident – they were looking for “something” in my right ear, which they found…a cholesteatoma. MS was suspected.
Anyway, at the time I had been cycling 5 days a week 25 miles a day 19 mph (road riding and mountain biking), doing martial arts regularly, played on two soccer teams (coed & all women), going to school full time, working part time on weekends, and raising my sweet baby boy (who is 27 now and getting married and buying a house) as a single mom. Yep I was busy and loving every minute of it. Looking back I do remember waking up some mornings and my right arm was numb, but I attributed it to “my arm having fallen asleep.”
Flash forward 12 years, when I had what I now know as a full blown relapse of MS (I have RRMS). It was during one of the hottest days of the school year (May/June) and I was substitute teaching for a gym teacher on field day. I thought I was suffering from heat exhaustion. I had an interview with the principle for a job during my lunch so I ran into the bathroom, ran cold water under all the pressure points of my arm and on my neck, shook myself off like a dog who just ran through a sprinkler, freshened up and off I went to the interview. Didn’t get the job but I was so PROUD of myself for having pulled off the interview after finding out I had suffered a relapse. Tripping on Air describes my interview perfectly. Anyway, it was the following Monday when a 4th grader asked me a simple question about how to spell a simple word that I knew something was not quite right with me. I redirected the question to his classmate…whew, that was a close one. 8 years as a substitute teacher with MS and you learn how to dance gracefully without anyone noticing your Tripping on Air (love that expression xoxo)
Long story short, the MRI showed I had 8 lesions -one was abnormally enhanced. My neurologist who wanted me to go for a spinal tap 12 years earlier said, “enough, I’m making an appointment for you to see a MS Specialist in NYC.” I reluctantly agreed. The time had come to face the music. Thank god my husband was there to help me because the next three years where not easy and if not for him we would not have found the proper drug for me.
I hold my head high when I tell people I have MS. Do I have days were I am “Tripping on Air” you bet I do. But when that happens I stop, gather myself together, and mentally tell myself “I got this.”
I feel so blessed to have been gifted with the people who love me, look after me, and encourage me to continue to be strong. Every so often I do have to remind them that I have MS and my brain doesn’t work the same as everyone else, I am short circuited in certain areas of the brain so I’m not as quick with the wit nor am I quick on the draw and I’m ok with that.
I also have to remind everyone, that no two people with MS are the same. Physically, I may look fine but my brain is literally like a slice of baby swiss. I lost count on the amount of lesions on my brain along with a few on my spine. I firmly believe because I was a very active child from the time I was 5 then a college athlete and a single mom who was actively involved in my sons education, it has been my saving grace which has allowed me to lead a fulfilling active lifestyle for 56 years.
Thank you for letting me share what I am proud of and for sharing with me your thoughts and experience.
I agree we need to reclaim the word disabled. We have issues that cause us to be disabled often because of barriers society puts out there. We have to keep brining down those barriers and speaking up! Thank you for doing that regularly!
As always, thanks for sharing your feelings. I’m proud of you lady.
I found your paragraph:
“Being proud to be disabled isn’t about liking my disability. It isn’t about pretending that disability doesn’t straight-up suck. Rather, claiming disability pride is a rejection of the notion that I should feel ashamed of my body or my disability. It’s a rejection of the idea that I am less able to contribute and participate in the world, that I take more than I give, that I have less inherent value and potential than the able-bodied Becky next to me.”
in a recent MS publication, as I came across Disability Pride month in…August, 2022.
All I can say is – WOW !!!!
This is so extraordinarily well captured. I have read it often as I struggled with the concept of Disability Pride.
Thank you !!
thanks so much for reaching out, Doug, and for these kind words!
I’m so glad this resonated with you!