Thank you Katie for this article. I to am gay and disabled, Learning disabled in this case. It was a relief/encouraging to read this too, someone else that won't let ableism silence them. And I get the most myself from other lesbians who want perfect people. I like Olantis, he doesn't give a toss either, good to know that too. I hope he does go into remission. And I can imagine you both zooming through the streets and on the bus, in your souped up chairs, and everyone better get out of your way.
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Ms. Savin, you have a good heart!
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This piece is a jewel. I'm grateful to have randomly found it and for the link to all the more of them. I've recently entered this strange world. Mobility has challenged me many years and I used a service dog who eased me into that place between just like everyone else and special. I didn't know sensory processing disorder was a thing. This past year I lost my entire vestibular system; my vision, brain, and sense of body are messed up. I've got sitting down in a familiar room down perfectly, I can't yet navigate. I wikied and find there's treatment to ease my way. Hoping that it's true for me. I've always used humor to cope and you've touched a balance (pun intended I guess) between recognizing what one has to deal with and proclaiming your right to take up space. I won't be forgetting it. I have a Master's in Social Work from healthier days and you've lit a light in a newly blackened room, that I might still be able to use that. My brain works so hard to find my balance that my cognitive skills are way less than they used to be, so it's really taken much from me. Now I suddenly feel it isn't a diminishment unless I acquiesce to it. How do I find out how Olantis is doing? I can see him rocking the cancer world but hate that he must.
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FYI even "haters" have their less obvious than your problems. Possibly a history of abuse, impaired mental skills bad family situations, mental illness, one or more horrible jobs...
Why does everything have to be labeled... People can be anxious... and perhaps YOU can make a difference for them as well as for Olantis? Try apologizing. I am handicapped; I stand aside for people who need to get by me. When I drive on a tow lane road I pull over for cars to pass. Courtesy works in several directions.. Dounto others.. not take, not expect.... etc.
Good luck to one and all.
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I think “haters” is an appropriate term for people who express hate. Yes, everyone is fighting their own battles. But we all have the right to express the pain we feel when people are thoughtless and unkind to us. That’s what the author is doing here. And she devotes a whole devastating paragraph to many ways in which she implicitly apologizes for existing and taking up space in her daily life at Cal. Maybe able-bodied people should be the ones apologizing for creating a world that is inaccessible to so many. Katie and Olantis are just trying to get to work. Just trying to live. Just trying to be. None of that should require an apology. The world needs them. When we build a society that’s not accessible to some people, we all lose.
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Katie! You rocked my world. Please formally introduce me to Anita some day. Thank you for letting me roll around with you for a few truly deep paragraphs. Your honesty makes me...feel.
DE
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Thank you, Katie! I can so relate. I have EDS, dysautonomia and a bunch of autoimmune diseases, too. But, 30 years ago when I was in grad school I didn't know that. I struggled with injury, fatigue, pain, arrhythmia, and worst of all, the feeling that I should tough it out--at incredible cost to my health and with permanent injury. Without a diagnosis, I didn't know I was disabled. Accommodations were the farthest thing from my mind.
I am so grateful that awareness of EDS and dysautonomia is improved and that disability pride is a growing movement. This country, this world, needs to hear our voices. And we deserve the right to participate fully in every sphere--including grad school. Good luck with your program. We need you.
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I don't mean this to be insensitive, but the author dances around the question of whether or not Olantis blasts his music while he's actually on the AC Transit bus. If he does so, I have to say that this is one social norm that I'm not so keen on Olantis fragrantly disregarding -- forcing everyone else on the bus to listen to your music is imposing a big burden on others, including other people with disabilities like sensory processing disorder.
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Hi David, thanks for your question. Olantis does not blast his music while on the bus. We both abide by the AC Transit passenger etiquette: http://www.actransit.org/basic-rider-guide/#basicrules
Thanks for looking out for those with sensory processing disorders.
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What a brillant read. Your article made me feel both happy and sad at the same time. What a better world it would be if we could imagine the unique stories we each have inside of us. Good luck to you both! We find the people we need in life.
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Phew! This piece is one of the reasons I am so endeared to the New York Times! Ms. Savin gives such eloquence and a balladic requiem of sorts to the human condition, wherein our lives, whether in a wheelchair or not, are subject to the same issues of serendipity and wistfulness.
The last paragraph nearly brought me to tears! A tour de force that is in the realm of the spiritual, and our human desire for a quantum of solace.
Luck Nwoko
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Thank you, Katie. Your beautiful writing opens my eyes and thoughts about the world.
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Having read this cry of life when the author could have felt separately decrepit, I want to piggyback on her topic. Somewhere around two thirds of the people whose brush with mental problems takes them to a diagnosis of psychosis will move on to functional lives. Whether we shake the diagnosis and its stigma is another matter. Hearing Voices Network is composed largely from members of that supermajority. We don't need the stigma.
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Thank you, Katie Savin!
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Fantastic article. I am going to share it with my nursing students . Hope sorrow happiness, fun, disability all wrapped into one and makes us think that every person has a story.
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Good luck to both of you, sometimes if you look at things properly you can focus on those things that you enjoy in life, rather than your disabilities. Almost everyone has things that hold them back in some way, being positive and focusing on your talents, abilities, and capabilities is best.
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Beautifully written from a lovely perspective. Thank you.
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connection: thank you :)
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:) thank you
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Once when I lived in Berkeley, I heard what sounded like a low rider with the bass boomin' hard and low. But there's wasn't a car around. Then I saw a wheelchair with big speakers out back zooming by in the middle of the street and thought "that's what I love about Berkeley!"
I guess that was probably Olantis and Roscoe. Thanks for bringing back that memory.
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Thank you, Katie. Good luck, Olantis!
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To Katie and Olantis
ROLL ON!
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Katie, we were in queer dance class together briefly, and I love this piece you've written.
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Thanks, Mara! That was a fun class :)
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A great story, well written with spirit and understanding. Thanks for sharing this, Katie. You (and Olantis) havemade my day brighter, and more thankful for what I have.
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You don't say what you are studying in school but you'd be an excellent writer. Wonderful article!
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It's in her bio. She is getting her PhD in social welfare. I have the pleasure of seeing her at Berkeley/
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Thanks! I see the bio now reading on my mac, could swear it wasn't there on the PC... must investigate. Now, I also have to investigate rumors of an animation...
I'm so glad that Ms. Savin has "white, middle-class" privilege because it has enabled her to tell the stories of people we would not otherwise hear about. I truly appreciated this piece.
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Thank you Katie, for sharing your story. You had me laughing and crying. Keep up the good fight.
As for "slowing down the commute:" All of our commutes would be faster if we had dedicated bus lanes and level curbs for loading strollers and wheelchairs.
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Thank you for the generous words, Martin! I am often laughing or crying or both at the same time, so I'm glad to hear it elicited that emoting for you too. :)
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Katie, this is a tangential remark to your wonderful piece: your description of hiding pleasantly in plain sight is a perfectly painful and accurate description of women and minorities who try desperately to fit in, without challenging of even ruffling the status quo. Just brilliant, especially in this fraught time of Trump et al normalizing racism and sexual harassment:
'I spend my days at Cal trying to balance my need to advocate my right to physically enter spaces with my perceived need to not offend anyone in the process — by dressing modestly, not too dykey, careful not to break any obvious gender or fashion rules; by keeping my mouth shut in the face of minor issues if I can deal with them on my own; by projecting a friendly and helpful attitude as much as I can.'
Brilliant capture.
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Berkeley must have changed some since I went there. I don't remember wheel chairs, although there must have been some. I do remember all the dogs which came to campus with their owners; they careened around the plaza, barking and fighting and mating. Some had owners, some not. Don't worry about your appearance, or needing to appear friendly. Berkeley is a big campus, approx. 27,000 students with a mix of grad students. You are allowed to be just who you are. I still remember a blind guy who used his cane to clear his path; he had a wicked swing. We didn't tell him he was a jerk; we just steered clear. He was the same guy who had a dog; he threw a ball for the dog, but he was blind so the ball often went into traffic. So, don't worry about yourself; you are much nicer than the dog owner.
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Thank you! I'm so pleased you got that from my piece... in some ways that was a central point since time with Olantis is so enjoyable as a result of this "hiding in plain sight."
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Katie, my brother was a quadriplegic for 37 years. He went from a WWII issue wheelchair (1970s) to a series of motorized chairs which he drove with a chin pad. He once tried to kill himself by driving off a bridge. (It didn't work.) He regularly ran over our toes, if we weren't quick-- and never apologized. An expert driver, he could glide through the tiniest opening. The chair gave him freedom and presence. Motion and hotrod zen. He hated visiting the showrooms, because the salesmen weren't in wheelchairs and spoke down to him. He studied every inch of every chair, and he knew what he wanted. Your article made me realize how much he would have loved talking to someone like you. Thank you for the memories.
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Katie Savin: thanks for sharing...... you have taught me to take notice! I look forward to hearing more.
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Thank you Kate. Beautiful writing about your World. (I share it too). I am rooting strongly for you and Olantis (I’m sorry I may be spelling your kind friends name wrong) and Roscoe and Anita. With love, activism and hope.
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This gave me goosebumps, made me happy and made me sad at the same time.
It also makes me want to give my own wheelchair a name.
Thank you!
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I hope you do name your wheelchair! I find it improves both our relationship and the ice-breaking of meeting people who aren't used to being around people in chairs. Though my friends my add that I anthromophize everything...
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What a beautifully written tribute to a friendship that will stand up to time. Godspeed to Olantis. Katie and Anita, change the world!!
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My wheelchair's name is Indy. I'm also a taker for sidewalk drag-races and dream of tricking out Indy with solar-powered batteries (and a removable snow plow fixture - Minnesota winters, you know). The only bus stop strangers I talk to are the awesome ones like you and Olantis. Thanks for the sharing the exquisite fun and joy of being a supercharged crip. :)
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I'm in SoCal, so we probably won't meet a bus stop. Still, I encourage you to talk to people like me, a regular person who is also waiting for the bus. Chances are, there are many people who would talk to you, but are afraid you would think they are being too forward, that they will look like they are just trying to be nice to the person in the wheelchair. We are all so concerned about how we look to others.
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I love this! I wish everyone could read it.
5
Oh my goodness...
What a heartfelt, inspiring article!
What determination, and compassion!
After reading the depressing political news of the day it was SO good to read something positive.
Thank you.
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Life, once formed, is tenacious. Thanks for the piece. You go girls (Anita too!)
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Thank you so very much for such a charming and enlightening story. Go, Olantis! Go, Katie!
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This article is so sweet and kind, it reminds us, we should care about mankind. Where ever we are going it not as important as showing respect and caring to our fellow man. If we get to busy to notice others, no one will notice us.
Do we not look or speak to people who are trying so hard to live a “normal” life because it reminds us how fragile we really are? Is this put in the “I will think about that tomorrows box? And I may even do something to help. We miss so many opportunities to give and care because we are “busy doing,” sometimes things that do not need to be done. But it helps us not to feel someone else’s pain.
Howl about just this season of the year, giving and share a little of yourself to someone, who looks or feels in your heart lonely or lost. You may find that you are the one who was lost not them.
May the Christmas Season help us all to find our way again and follow our “STAR”.
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You say, "And I may even do something to help." I started picking up a house-bound senior citizen this week for his daily AA meeting, then taking him home again - with his walker, both ways. No "may" about it for me.
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Ms. Savin mentions the privileges that separate her from Roscoe. They are unfair. Anyone who watched Ady Barkan on Chris Hayes last night could not help but be moved by his plea. He was facing loss of his healthcare. He has ALS and receives benefits under Medicare. As I was watching, my son, a quadriplegic, rolled in and watched. He commented that Barkan was speaking for him. I agreed. But afterwards I checked to see exactly what mechanism would cause the tax cuts to affect Barkan's benefits. I found he was covered under a special program that qualifies people to receive Medicare because they also qualified for SSDI and have ALS. A small window. He is facing cuts because the sequestration rules triggered by the tax cuts call for automatic cuts to many social programs, including Medicare ( capped at 4%) but exempts social security and Medicaid. So even though Barkan and my son are both sitting in wheelchairs suffering horrible permanent injuries and receiving government healthcare, in actuality, my son is not directly threatened by sequestration from the tax cut. (Although only a fool would believe the Republicans will not come after him next.) What kind of monsters write and manipulate rules that allow lowering taxes on the wealthy that will potentially kill some people but not others solely because they are sorted by the chance of what medical program happens to be keeping them alive? Medical care in the US is a cruel crapshoot. Go to Barkan's GoFundMe page.
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So grateful to the Times for this column. I'm cheering for Olantis to survive too!
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You made me homesick. Thank you
1
Thank you for reminding us of... personhood. Everyone on the bus probably feels restrained in some way. Sometimes the more you have to deal with, the less time you waste on covering up your inner self.
Your description of Olantis makes me think of the best piece of advice on style - "Be yourself - only more so."
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You go, girl! I've used a wheelchair for about a total of 12 years of my life and (being in remission and walking now) I'd have to say that if ever I use my wheelchair again ("Greenly") I'll for sure think about decking her out with some stuff of my own style. Tell Olantis he's in my heart too - and I hope he's better soon.
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A fine article, this is. May the force be with you.
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Brava Katie!
What Life!
What Spirit!
What Love!
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"I enter another space in a wheelchair, one in which the homeless and disabled people like Olantis are quick to greet me and talk to me while the able-bodied world averts its gaze."
Yes. Yes yes yes.
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A fine personal essay—so filled with telling details and humane views—thanks !
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Uplifting. Thank you.
Onward.
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Excellent article! Thanks.
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The main social problem for those confined to a wheelchair is the requirement that those with whom they interact look down at them, much like an adult looking down at a child. As a result, there can be a tendency for people to take less seriously the thoughts, opinions, and contributions of the wheelchair-bound.
It would be nice to see a stable, versatile platform that combines the best of the wheelchair with the best of the Segway so that its occupant “stands” (is supported in a standing position) instead of sits. Obviously, it may require a large, heavy base to avoid being top-heavy. But with something like that, people like Ms. Savin can negotiate the hallways and sidewalks of life on an equal footing with the rest of us, everyone’s eyes more or less at the same level.
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That's a good idea. But even better and probably safer and less expensive would be a folding chair affixed to the side of the wheelchair. That chair could be extended into a seat for the able-bodied to be invited to sit on. Perhaps the chair could swivel for more face-to-face interaction. An additional benefit would be that the second chair plan offers a more equitable proxemic balance between the communicators.
Dean Kamen, who invented Segway, first invented a wheelchair that could stand up, climb stairs, and do other great things, utilizing the same sort of tech that later went into Segway. It was called iBOT, and was pretty great, but expensive. Production stopped, but Toyota said it would partner to revive it back in 2016. I hope they do bring it back at a more affordable price.
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Dean Kamen, inventor of the Segway, also invented exactly what you describe - the IBOT. It can even climb stairs.
3
Thanks for this beautiful piece, Katie Savin. It's a painful reminder of what is most important at the very time our Congress is dismantling health and social supports for our most vulnerable. While we continue the seemingly hopeless fight for more compassionate policies, each of us must also look up from our busy everyday lives and really see the people right in front of us who might benefit from our help. And not just see them, reach out and offer assistance, kindness without pity and impatience.
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A joyful, witty, compassionate, wonderful piece of writing. I see a book in Katie Savin's future. I will circulate this essay far and wide.
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Thanks - for the most spirit of any article in the Times today!
And a dynamite, dynamic illustration.
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I am elderly and for various reasons have been partially or completely disabled, intermittently, for the last two and one-half years. I love this article and the whole series, look forward each week to reading it. Thank you NYT for starting this series and thank you for all the thoughtful essays that have appeared in it. Despite the ADA there are still so many barriers, often unexpected, to full or even partial participation in life, of which I used to be mostly unaware. And many able bodied people are either not helpful or downright hostile. BTW I find that minority people on average come more often to my aid when they observe I am having difficulties than are white people (I am white).
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Yes, my mother and I noticed this too when I was pushing her in a wheelchair. Black and Hispanic people rushed to open doors for us much more often than white people.
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I am not disabled, but I am a smaller person and I was overburdened with luggage recently and a woman had her daughter (adult) help me carry some bags to the seating area at the station. I thanked them over and over again. I am sort of white (I am part of a minority that is considered white and usually appears to be white) and the family that helped me is black.
Kindness knows no color.
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Yes, I've seen the pattern too.
5
I am so thankful that space is being made for disabled voices with this series. I relish in hearing the details of the the author’s experience - and am devastated at the struggle she describes her friend experiencing. I hope that these voices become integrated into our lives in ways we all deserve.
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Excellent writing Ms. Savin!!
Thank you for sharing these stories from your life.
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A wonderful story -- I thank the author for sharing her perspective on something most of us have not experienced.
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