Friday, July 6, 2018

Today I Learned Something From My Friend Chris

I meet a lot of cool people thanks to this blog, and Chris here is one of them:


John and I first met Chris and her hubby Brandon while they were on vacation here at Disney, and we've had a standing date since for every time they visit. They're the best kind of nerds and One Of Us - trust me, you guys would love 'em.

Chris is in a wheelchair, and she tackles life with relentless optimism and spit-take-inducing humor.  I mean, she's a graphic designer, and this is her shop logo:


:D :D :D

(Go check out her Disney tees; they're awesome.)

Chris also drops some serious sit-back-and-think life observations on her personal Facebook from time to time, and a little while ago one of these socked me right in the gut - so much so, I asked if I could share it here with all of you.

She said yes, so I'll let Chris take it from here:

[transcribed from Chris' FB post, so you don't have to squint]

Dear a number of folks I came across today who will never hear this because I'm too cowardly to say this to you directly:

One you: I don't need your sad, sad eyes while you holler out to "have a blessed day." 

And other you: please don't wish I "feel better soon" with your pinched face, or give me a heartsick "good for you" when I tell you I'm not sick. 

Oh, and THIRD you: do you think you're having a ~real moment~ with me by catching my eye as I leave and noting how "at least it's nice just to get out for a little while, huh?" and then capping that with a conspiratorial wink and sage nod of ~understanding~? 

I am out today with my dear friend. Just out - having lunch, doing some shopping. I know I'm in a wheelchair and she's in scrubs, but that's because she was excited to hang out right after her midnight shift so she came right over without changing. She's not my nurse, but it wouldn't matter if she was. You make me forget the pep in my (figurative) step I had from how much I like the cardigan I'm wearing and the way I got my hair looking kinda on point by myself and how much I was digging this new lipstick because now I'm fighting the feeling of being a rolling sad sack. 

I don't want to be a part of Your ego boost. My leaving my house isn't consent. I can and do ignore a You here or a You there but god, there were so many Yous today and You All emotionally exhaust me. Please, please, just talk to me like a regular grown ass adult with a real life, or don't talk to me at all.


 That was a Facebook memory Chris shared from last year, so she also included this addendum:


Woof, this day was a doozy and it was followed shortly thereafter by some complete rando who came up to me midway through singing at karaoke, throwing her arm around me and filming us with her phone (surely to get posted to her Facebook as inspo-porn or sent to Upworthy as inspo-porn or something equally cringy). 

At least that one I kindly but firmly called on the carpet afterward and thoroughly explained why it was all Super Not Okay. I was proud of myself (and loved my friends for their outrage/self-control at letting me handle it), but I still cried most of the way home from the bar that night.



Yowch. Anyone else cringing with me through all of that? And yet, is anyone else able to vividly picture it all happening, because we see this kind of behavior all the time? Maybe even know folks who do it?

I think that's what got me the most: it's not that those people were trying to be jerks. They honestly thought they were doing a good thing, when in fact they were being patronizing and selfish. Selfish, because it made them feel good, not Chris. Like they were the hero for noticing her, for cheering her on. And my heart is pricked, because I can only hope that in the past when I've seen folks in chairs or with other visible disabilities - a common occurrence at Disney -  I hope I didn't fall into that trap of, "Oh poor them, let me smile extra bright in their direction, just in case!"

Thanks to Chris I can see how self-centered that is, how potentially damaging. We all fight hard battles, and we all deserve bright smiles, not just the ones with the most visible battle scars. No one should be singled out of a crowd for patronizing head-pats and "atta girls" just to make the rest of us feel magnanimous - no one. And going forward, I hope I can think a little less about what makes ME feel good - about how *I* can be a hero - and think more about what my friends and fellow fighters through life want. About what makes them feel most respected and most comfortable.


I hope Chris' posts made you sit back and think, too, and maybe kicks off some conversations tonight around the dinner table. There's nowhere else online I'd feel safe even broaching this topic, but our tribe has proven again and again that we can talk and learn and challenge each other here, even admit our own failings, and do it in a safe space. I love that. I love that you guys make me a better person.

And thank you, Chris, for letting me stick you in the spotlight today! Love you, and see ya real soon.



*****

[Quick Editing Note: I originally wrote that "Chris happens to be in a wheelchair, but she tackles life with optimism, etc." Several of you pointed out that my wording was problematic, so I changed it and did my best to understand why. Just as this post is trying to point out, I want to do better, and I appreciate the grace from folks who corrected me. 

At least one of the corrections was quite cruel, however, which makes me wonder: If you rip people apart for not knowing the exact right words - especially when they're trying quite hard to get them right -  how are we ever supposed to learn? You make us afraid to talk about things, and fear will only lead to more ignorance. Grace, guys. Please. A little goes a long way.]



72 comments:

  1. I'm so sorry that Chris has to deal with this on a daily basis. I have two things to share.

    First, I have a friend who is in a wheelchair. She has MS, and I met her on a cruise. As for me, I just immediately figured that she is a cool person who rolls around rather than walks-and that is the only difference. Yet, people repeatedly look at her with pity, and even worse, they talk right through her about her needs to her husband, as though she is not even there. She deals with this every day, even though she is smart, funny, and awesome.

    Second, I know a little bit of what Chris is feeling, though on a much smaller scale. I have alopecia and wear a wig most of the time. On the days that I just wear a hat (because wearing a wig all the time in the Florida heat sucks), I get "sympathetic" smiles, admonitions to "keep fighting", and even stories about how their aunt went through chemo. That's right--they assume that no hair means illness. Never mind that I am a healthy, strong woman who runs marathons! Once, while picking up a to-go food order, the employee teared up as she gave me my meal for free. At first, I thought she was just doing a random act of kindness until the truth hit me while I was driving home. The point here is that people make assumptions about people they have never even met. And you are right--they think that they are being encouraging but in reality they are just making the person feel bad.

    Hugs to Chris--not because of any perceived limitations that people may feel compelled to mention--but just because she sounds like an awesome human being who I would like to be friends with.

    Lisa

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    1. You sound rad as heck, Lisa, and I'll take that hug, send one back and be your friend anytime!

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    2. Lisa, I am so intimately familiar with that particular awkwardness. I had relatively invasive brain surgery a few years back, and the first time times I left the house with my shaved head after my home recovery period, so many "well-wishers" came up to me, said God was looking over me, wished me health, etc etc. It happened three or four times before I realised they thought I had cancer. It made me so uncomfortable.

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  2. I love you too, you gorgeous geek, you. Thank you for doing something we ALL struggle with in life (I know I do!) - listening to others' experiences, reflecting, course-correcting and respectfully asking others to do the same. That you shared this with your - our - people means so much to me. See you NOT SOON ENOUGH ;)

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  3. Jen,

    Made me think of the Neverending Story. The quote about "kind people really are cruel" thing. I can remember the character that says it right now.

    Maureen

    P.S. It was great to see you in Pittsburgh!

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  4. Reminds me of a time when a man in a wheelchair held a door open for me and a friend. I went through, smiled, said thank you and went on my way (the way I would if a non-wheelchair bound person held the door for me). I got an ass chewing from my friend for being rude and not taking the door from the man. But I stood up for myself and said why should I treat him any different then normal? He was obviously capable of holding the door and wanted too or he wouldn’t have done it. I told her she was the rude one cause she only would’ve taken the door from him because of his wheelchair, as if he need special treatment from us. I try to treat everyone the same unless it’s explicitly said to me, by the person themselves, that they need my asssitance. Otherwise I smile and nod like I would with anyone else.

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    1. Just a note but the term 'wheelchair bound' is somewhat problematic. For folks who use them wheelchairs help provide access to the outside world rather than being confining.

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  5. Is that a figment shirt? Very cool.

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    1. It is, and one I designed at that - thanks! :)

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    2. That shirt is awesome. And I will now have that song happily stuck in my head.

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  6. Can I be the one to rain on the parade and point out that most of us really hate the phrasing "[X] happens to be in a wheelchair, but..."? We don't just happen to be in wheelchairs, and having positive traits listed after us being wheelies definitely doesn't need to be started with "but" because that would imply our chairs are a negative part of our life.

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    1. I was just popping in to say the same--I'm not a wheelchair user, but my sister did, and wasn't despite her chair that she had other great traits. Important topic and I'm glad it's here, just consider how awesome wheelchairs can be for some folks; they shouldn't be relegated to a "but,".

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    2. I definitely agree language is important, and I don't want to speak for Jen, but I think what she meant there is those are the...tactics, I guess, to tackle discussing both the ups and downs of life on wheels, not that I have those traits despite being in a wheelchair, which I do try to publicly and privately (to varying degrees of success - she's very generous in grading my humor ;) ). Being in a wheelchair DEFINITELY doesn't impact your value/worth as a person, but dealing with the complications it can cause can be tricky and at times disheartening, which I attempt to tackle with humor and optimism.

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  7. I use a wheelchair when I do WDW, and I use a cane when I need to walk anywhere outside of my house. I walk with a limp now. This is a somewhat recent occurrence, up until I was 40 (45 now) I was walking "normally".
    I am still shocked at how differently I get treated now, and it opened my eyes to how I treat others. This was a great post, thanks for sharing. :)

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    1. I began using my cane right before Christmas, 2014, and was so surprised by peoples' treatment that I remarked to my mom that I felt like Moses, parting the Red Sea. It wasn't until I realized there was more avoidance than respect in their behavior that I felt less "privileged" by it. I now use a rollator, so people in public spaces *have to* get out of my way for their own safety -- it's about the size of a wheelchair (but the seat face me and I can sit only while not moving) and moves more like a shopping cart. I DO still appreciate not having to stop and say "Excuse me, please" 42 times every two minutes. Just watch where you're walking, and I'll watch where I'm rolling.

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  8. This comment has been removed by the author.

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    1. I hope it wasn't my comment that came off as cruel! If so, I'm sorry, Jen. I didn't mean to make you feel bad. The edit you made is perfect! Thanks for sharing Chris's awesome story! I've purchased an awesome shirt and can't wait to wear it at WDW in the fall!

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    2. Pretty sure that was one of the anon comments below. I didn't see your original comment but you appear to be a classy person, and also not hiding behind anonymity.

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  9. Such an important post... treat people like people. Seems like it should be pretty easy.

    I’d also like to remind folks about the invisible differences people have. This was brought home to me today, as it usually is about once a year. I have RA and about once a year end up with a surgery that leaves me walker and cane dependent for a while. Well, I had a knee replacement last week, so my friend the walker is back in my life. My husband and I had to take our youngest daughter to get some things finalized on her SSI. As we’re talking to the worker, he turns to me and asks about my disability account that she is also receiving money from...... Dear Mr. Social Security Dude...
    Read your screen.... my husband is the one on disability. I still work 60 hrs a week. Sigh. Unseen disabilities are real too.

    So... treat people like people, no matter what accessories they have.

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  10. My daughter is visually impaired. She gets really annoyed when people assume that she needs help or is not capable in whatever situation. She has the tools and training to be independent; she will ask if she needs directions to the bathroom or can't reach the top shelf, but otherwise, she's got this. So, yeah, just ignore the accessories, including dark glasses and white cane.
    BTW, she's getting ready for her second year at college, living on campus by herself again.

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  11. Jen, I don't think your link is working to Chris's TeePublic page. Just me? I can't get it to work. I had to Google.

    Beautiful designs, Chris!

    KW

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    1. Agreed! Here's the correct link:
      https://www.teepublic.com/user/onarolltees

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  12. She sounds like an amazing person. Your "she happens to be in a wheelchair but..." phrasing is very problematic. I hope you will reconsider your extremely cringeworthy word choice here. You describe a very well-rounded, fun, and involved human being who does not deserve to be your token crippled friend...

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  13. I have a friend who walks with crutches as a result of rampant arthritis at a relatively young age. She frequently gets the "oh, you brave, BRAVE dear" reaction from people at the most random times. Like, in the elevator of our hotel as we went down to the lobby to get snacks. None of us wore our shoes, just socks, but another woman in the elevator singled out Cassie with "some days it's just SO HARD to put on shoes, isn't it dear". I honestly thought Cassie might spit nails.

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  14. Great post...It's going to take some reflection to figure out what to do with this. I want to share my thoughts but recognize that I might mostly just be sharing my lack of perspective.

    I'm definitely one of the bright smile people (although not a saccharine commentor or video taker -aack! I can't believe that happens!.) As a special education teacher and a mama of 2 unique and very special kids, I am constantly helping children with physical and other unique needs at work and home. While I don't rush in to help any person with a perceived disability, I also don't shy away from offering to assist (able bodied or differently abled, young or old). I hate to think that I'm being patronizing or trying to get my (vomit emoji!) inspo-porn fix.

    I work primarily with young families and regularly address situations where children have tremendous behavioral struggles in day-to-day activities. Often parents tell me they feel judged or ignored by people in the community and I think my motivation to smile, or offer assistance if it seems appropriate, stems from those feelings. I want people to know that I see them and I'm glad they are present even if their kids are struggling...even if other people might find their presence a nuisance.

    As a more introverted person, I imagine it must be exhausting to constantly receive attention for something you have no control over. I also sympathize with people trying to be kind but getting it all wrong. I'm sure that's me sometimes.

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    1. As an adult with physical disabilities, I always appreciate people offering assistance as long as it's offered as a genuine question. A lot of people grab my stuff without asking, or they ask if I need help but don't listen to my response and try to help me even if I've said that I'm fine. It's disrespectful, they're assuming they know better than I do what I need.

      But if you ask if you can help me and listen to my answer, that's great, I appreciate knowing that if I ran into problems, random strangers are almost always willing to help.

      Don't give me an exaggerated smile as if my life is so pitiful that I'd be grateful for any drop of kindness. But go ahead, be friendly, start a conversation, but do it the way you might with any other person. Because of my electric scooter people remember me more than they used to, and as long as they talk to me like the adult that I am, these extra connections are a silver lining to my condition.

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    2. LMR, thank you for your reply! I have been mulling over this post and the comments this week, wondering if and how I should change my behavior. While its a narrow perspective, it has been helpful to reflect on times strangers have helped me - what felt kind and what felt patronizing or judgmental... I appreciate assistance from random strangers but ideally without commentary.

      After consideration, I am fairly certain that my interactions and offers to help if needed are universal, not reserved for a subset of the population, but I hope to be more thoughtful about my approach going forward.
      Your first paragraph really resonates with me. It would drive me bonkers to have someone take over without my permission. As an adult I am rarely in this position anymore and it is painful to know that is not the case for adults with physical disabilities.
      As a preschool teacher I'm afraid everyone gets the bright smile...but not as a sign of pity - just a habit from spending a good portion of my day with joyful preschoolers. :-)

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  15. I'm really glad you posted this Jen and Chris! I'm sure I'm guilty of some of this and it makes me cringe to think of! I work for a charity for blind people and often hear how they feel patronised or ignored - a lady the other day said 'They think we don't know when we're being ignored or left out but we do!'

    Personally I've had one very brief wheelchair experience when I broke my ACL. Most of the time I was on crutches but when I went to an airport having booked assistance they said I had to go in a wheelchair around the airport.

    Just in that short time I had people talking to me like I was a small child who was capable of understanding anything that was going on. It was so frustrating and really opened my eyes to how exhausting it must be to go through this day after day.

    Although my short experience doesn't remotely compare with people who actually live this, I think it definitely helped me behave better around people with disabilities!

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  16. I think a big part of the general 'weirdness' people display towards those who are differently abled is that there is a huge uncertainty - many MANY people who use mobility aids expect preferential treatment - convenient parking spaces (location wise), queue jumping - many many people I have encountered in busy situations complain that it is 'selfish' of people not to let them go first because they are in a wheelchair. Or people who demand that because they are in a wheelchair they are more entitled to a particular thing (a prime position in a restaurant or queue jumping at theme parks, or first pick of sale items when everyone queued from 2am) than the people who got there first or waited longer. Obviously these are a subset of people with different mobility needs but my point is that you never know whether to treat these people as you would anyone else, and hold them to the same standards, or whether you're going to get reamed out for being inconsiderate because you expect someone in a wheelchair to wait their turn. Either differently abled people want to be treated normally or they want special treatment. It's a minefield that makes introverted and anxious people like me too afraid to engage with someone in a wheelchair because I'm too afraid of getting reamed out. If an able bodied person demonstrated some of the self entitled behaviours I've encountered they'd be called out for it. To clarify: I'm not talking about accessibility regulations (ramps and so on).

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    1. Well, using a wheelchair or crutches can mean that moving about is often slow and/or painful. I' suggest you to borrow a set of wheels or crutches (and a pair of padded gloves) and attend a full day at a convention or just a regular day at home & work.

      See, it's not only the current moment, it's all the shit that hits you the moment you realize you need to figure out how to manage in a society designed to "average" people. And feel free to explore the ramps and such to see how well they are designed. I was once stuck outside an accessible building, because the front doors had tresholds and would have required help from at least two people. I didn't have my phone on me and there was no way to contact staff. Later when I contacted the staff about accessibility issues, they very happily told me that the wheelchair access was located in the parking hall and it is easy to drive a car there. I HAD NO FUCKING CAR. I didn't have an entrance either.

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    2. This is in response to Lex. It beggars belief that "many many" times you have encountered people in wheelchairs who have demanded to be first in line or whatever, when in 56 years on Planet Earth, I have never once encountered this. I live in the Midwest but have traveled the world extensively. No doubt there is a very small minority of people with disabilities that do so, but you seem to imply this is the norm.

      Rather, I see the opposite: people shoving ahead of someone in a wheelchair to get onto an elevator, thus rendering the path unusable for entering and turning the chair. This, when the user of the wheelchair was really first in line, but in the confusion of people exiting, others push ahead to enter and block/fill the elevator.

      THIS, I've seen dozens and dozens of times, having traveled and been on adventures with a wheelchair user. And countless other indignities.

      I don't mean to be harsh, but your comment struck me oddly. Perhaps you live in another country, where norms are different, but it upset me.

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    3. Firstly, I'm not american. So I can't comment on American situations, but I've been reamed out one more than one occasion (especially at theme parks! I don't get it) after I've waited patiently in a line, or a queue, or any other kind of 'wait your turn' type of situation and someone with mobility challenges has called out the people around them and reamed them out for expecting them to wait their turn like the rest of us.

      My point isn't about implying certain things are a 'norm', but more about the fact that as a person with anxiety and depression, I actively avoid any situation where I could end up getting 'attacked' verbally. My point is that perhaps certain people find it difficult to know how to handle a person with mobility challenges because they never know which extreme they are facing - either the person in question wants special treatment, or they want the complete opposite, and whatever you do you run the 50% risk of being wrong. For me, this is extraordinarily anxiety-inducing, so I'd rather not engage at all.

      Perhaps my own mental health challenges are a social disability themselves - my social anxiety has been deteriorating steadily in recent years to the point where I cannot leave the house on my own. I can't go food shopping on my own, I buy everything online because I can't cope with physical shopping, I don't answer the front door or the phone, and I don't speak to people I don't know. For me, getting reamed out for either treating someone 'differently' or NOT treating them differently is terrifying. So what do I do? Which is it? Arguably NOT treating someone differently should be the default, and as far as I'm concerned it is, but then I get yelled at. I can't win.

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    4. I have seen it, but rarely. Years ago, a well known area advocate for the disabled (this was in the late 70s), in a wheelchair, just went to the front of a line in a bank. At the time I thought, and still do, that equal access is a right, and he was putting the (then) "movement" back by expecting preferential treatment. Equality means he waits in line like the rest of us. Of course, I was a little biased (okay, a lot) against him, as he had a service dog he kept unleashed, and it was hit and killed by a car due to his negligence.
      I realize that I (wrongly?)assume those in wheelchairs are more able to wait, than, say, a person on crutches, who I might ask if they want to go ahead of me. That is probably not fair, assuming they have it harder, or more painful. It just looks more painful to me! Every differently-abled person reacts differently and wants different interaction, so others are apt to get it wrong some of the time, even with knowledge (I have disabled family members), so it's hard to know what to do. Some, and just some, are edgy and ready to take offense. But, so are people not disabled. It's just people. Some take advantage, some don't. Some are prickly, some aren't.

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    5. Again, this is for Lex, though I appreciate Anonymous's perspective as well. Thanks for the further info, Lex. I am so sorry you're struggling with this, and yes, social anxiety on that scale is certainly a disability, and it's unfortunate that you've encountered these negative situations.

      Wishing you love, Lex! I have had months and even years where I couldn't leave the house and am now in a much happier place and I pass for a 'normal' person these days who can go anywhere. But I know the feeling of never, ever wanting to leave my safe place.

      Pulling for you!

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    6. Lex: Sorry for your challenging situation. However, for a so-to-say "average" person it should be easy enough to work the situations you've described. It does feel unfair that due to your own condition, you place the blaim on us, the not-so-agile folk.

      And just as a reminder: I've got panic issues too and being an eysore/target/burden just because of my mobility enhancers makes it a whole lot worse. I've skipped conventions, events, shopping, parents' evenings and more just because leaving my home was impossible.

      We've got all kinds of dents.

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  17. This made me teary. One of the best people I know is Chris...and who gives a crap if she's in a wheelchair. I never understood judgement like that and people like Chris make the world a better place...and a little cooler.

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  18. I am disabled and sometimes that means I use a walking stick, walker or wheelchair despite being 32. I think a very important thing people without disabilities fail to see is that our lives are enriched by mobility aids, rather than hindered by them or the notion of being confined to them. When Stephen Hawking passed away the internet was full of images that suggested he was now free from his wheelchair. Stephen's wheelchair allowed him to mobile. That's why they are called mobility aids. THAT'S freedom.

    We aren't "stuck" in them or stuck having to use them. Without them, yes, I would be stuck in bed and stuck in the house. But my walking stick lets me get to the mailbox without falling over. My walker gets me to the shops and down each aisle I need to go down without being completely exhausted. My wheelchair gets me to meet ups with my friends because without it I would never manage the distance on foot. Our mobility aids are the opposite of what people want to believe they are.

    It's ok to offer assistance to someone who is clearly struggling, but ask if we want help first. If we're managing ok, let us get on with it. It's ok to not know the correct language to use. We've spent most of our lives leading up to this point where people are now beginning to see that their language is ableist or inappropriate. It's ok to ask if you are wording things correctly. Anyone who would rather rip you apart for saying it wrong rather than helping you understand why it is incorrect and giving you acceptable alternatives is not speaking for me or the majority of people with disabilities. We want to help people understand us and how they can legitimately help us and support us.

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    1. Thank you for enlightening me. I had a back injury that required me to use a cane and a motorized cart in store, for which I felt extremely guilty - and rather "stuck". That was years ago, but I should have been more grateful such things were available to me. I was too busy being in pain and grumpy and wishing I could heal faster.

      Thank you for broadening my definition of freedom. You sound like an all-around awesome person, and you're a damn good writer, too.

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  19. I would like to share an experience that I had. I was out to dinner with my family and was gazing down the aisle while thinking about something stupid I had done at work. No doubt my face reflected my disgust with myself. It happened that an elderly woman in a wheelchair was being pushed down the aisle, and I saw her without actually thinking about her, if you understand what I mean. As she got closer, I realized that she was looking at me and no doubt thinking that my expression was for her, so I smiled, and she turned her head away. I've always felt bad about that, but I don't know what else I could have done.

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    1. I have done that before! There's not much you can do, but it still sucks. I'm sorry!

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    2. I did something similar last week. I immediately told the lady, "I wasn't snarling at you. I was snarling at my situation." Thank goodness she laughed!

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  20. Thank you Jen for posting this and starting the discussion, and for sharing Chris' awesomeness with all of us. <3

    I struggle with this as well. I know not to infantilize people who might happen to be in a wheelchair or otherwise visibly disabled. And I don't inflict myself on them for inspo-porn - I never record other people unless they're my friends and they want to be in a video. That's gross.

    But I do make a point of making eye contact and smiling, sometimes a slight nod. Mostly because the folks in wheelchairs are slightly below eye level, and I notice people in crowds seem to be awkward about it. So I glance, and when we make eye contact, give them the same "hi fellow human" smile of acknowledgement I give everyone else. No comments, no pitying looks, just a smile.

    I can see where that could even be too much, especially for an introvert.

    I do the same smile for anyone whose eyes I meet in public. But I make a point of doing it only with folks who I think might need a little acknowledgement - women wearing hijabs always get eye contact and a smile, for example. I do it to try and counteract the hate and scorn they might be experiencing from other people.

    The only time I start conversations with strangers is to give compliments, because most people don't get told how awesome they are every day. If they have awesome hair or a neat outfit or spiffy makeup or cool tattoos, I usually toss off a quick compliment - but I do that to able-bodied people, too. I like to give random compliments, always on things that people chose. Telling someone they have pretty eyes is a little weird, and may come off as hitting on them. Saying "hey I love your hair color!" or "those tats are gorgeous!" is commenting on something they chose to display.

    Differently abled folks in this thread, should I stop giving a smile and nod to people I see in public? Would you prefer to be ignored by random strangers?

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    1. Hi Anissa! I personally will never not enjoy a genial "hi!" and smile, because that's...well, I'm THAT annoying person who "hi!"s the world, lol. (I'm what I like to call an introvert in an extrovert's wardrobe - I love interacting with people a LOT, but I started out and still have some core of "all this makes me tired - is it time to go home and have a one-woman Backstreet Boys dance party yet?" ;) ) Fellow human-to-human acknowledgement - especially when you're right in that sometimes mobility aids (or other "differences" of all kinds) make us magically invisible to many - is great. Where it gets uncomfortable (or worse) for me is when someone feels the need to go further (either explicitly with something said or more subtly with tone a/o gestures) and let me know I'm being acknowledged BECAUSE OF my disability, if that makes sense: uninvited touches, sad tones, and so forth. It can be a fine line to walk and everyone's is a little different, but in general if you wouldn't do/say it to an able-bodied person, follow the same rule for a person with a visible disability. Just my two cents' worth. :) <3

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    2. Thanks for clarifying!

      I think that's the crux of it. And I do smile and nod to anybody I happen to catch eyes with. Not because I'm an extrovert - I'm a lot like you, I enjoying interacting with people when *I* want to, and when I don't, I go full hermit crab. I taught myself to smile because I have an epic case of Resting Bitch Face and people would always ask me what was wrong or who pissed me off. No one, that's my concentrating face, and if I'm walking around by myself the odds are I'm thinking about putting up a new shelf at home or the last book I read or the next chapter of the fanfic I'm writing, not the people around me. I don't want to walk through life looking like an axe murderer, though, so I learned to smile.

      Uninvited touches are always wrong. I don't understand why people think that ANYBODY needs an unasked-for hug. Yeah, I may be having a bad day right now and on the verge of crying because of something that happened, but 1) I only want hugs from my friends and 2) if you OR my friends hug me right now, I'm gonna start crying for real, and I just wanna pick up some hair dye on my way home so I can deal with whatever it is THERE. Not in Walgreens, surrounded by well-meaning strangers.

      It's sort of similar to service dogs, in a way. I LOVE dogs, I am a huge dog nerd, if I'm out in the park I'm liable to stop whatever I'm doing to go "OMG is that a Cairn terrier?! Cool!" The owner can then respond with delight that I know what their relatively rare breed is, or just say thanks and keep going, as they please. I'm not that idiot who runs up to other people's dogs and smooshes them without permission, though, because I try not to be a jerk. But if it's a service dog, I ignore it while it's working. I have friends with service dogs and mostly they want to be left the heck alone, not every day of their life needs to be an Educational Experience for all the normies around them. The most I might say is, "Gorgeous dog," and most of the time I don't do that either.

      Treat everybody like normal people, because they ARE, and don't be a selfish jerkwad. That's life advice I can get with.

      Thank you again for taking the time to answer. Also, your shirts are freakin' awesome!

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    3. You're so welcome! (And thank YOU for the kind word on my shirts!) :) The way you describe "teaching" yourself to smile a.) made me lol, and b.) is really similar to what I did to myself over the years - I found that if I spoke out first with a greeting (which usually involves what my husband and I call "'cute top!'ing the world", lol; I'm frequently guilty of a "hi - hey, cute top/I love your shoes/that's a rad tattoo/etc!" - never physical attributes and no gender immune, just a way to say "I dig your steez - cool self expression choice, fellow human!"), it can head off pity looks/touches at the jump and allow me to be seen for me. (And to honor that not everyone wants to be interacted with I try to do it in passing or stayed attuned to their social cues and clues so no one's stuck talking to me if that - ie, talking to a stranger - isn't a situation that makes them comfortable.)

      As for "pity touching...sigh. It's the worst.

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  21. Thanks for sharing Chris and Jen! Its always good to be reminded that putting on special manners for other people doesn't make them feel special, just us. This post put a new light on an important topic.

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  22. Thank you Jen and Chris for a very thought-provoking post today.

    Martine

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  23. Everyone gets looks at with the same RBF so no one gets singled out. Heehee.

    Unless you're a stranger with an animal then, "OMG can I pet the fluff?"

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    1. LOL, same!! It's a running joke with my friends that I always speak to dogs in public. Their humans are secondary. :)

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  24. I've used a rollator to get around for about two years now, and will most likely graduate to a chair within the year. I just want to tell people:

    Just because I'm fat, don't assume I need walking assistance *because* I'm fat, and don't suggest I "lay off the salad dressing."

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    1. Rude! The nerve of some people.

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    2. I'd be tempted to glare at them and respond with something like, "I ate the last S.O.B. who said something so boneheaded to me. Eff off before I bust out the barbecue sauce for your skinny butt." But you shouldn't have to go through every day doing battle with idiocy.

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  25. WHEELCHAIR - YAY! TAKES ME TO PLACES! This was my first feeling when I received a nicely fitted set of wheels underneath me and the baby I was carrying. You see, during every single (effin') prengnancy I've had such severe pains, that walking and even just laying about is horrible. The combination of being home-bound, in pain and lonely during day-time and absolutely useless during family time quickyl starts to drop the mood.

    This is why access to a propely fitted wheelchair for free (thanks to Finnish health care system) was a huge, huge, HUGE benefit! The happiest moments during my pregnancies are wheeling around supermarkets, festivals and art galleries! Sometimes even having one of my smaller kids on my lap.

    However, wheelchair makes me either invisible or an obstacle. Too many people think its fine to jump over me or PUSH my chair so that they can pass. I also seem to lose half of my brain and ability speak. But the "I'm so sorry for you / what a brave woman" type of looks appear when I wheel around with one our smallest kids on my lap. Like - whaaaat? :D We're havig heaps of fun and a mother-child special moment, and for the life of me I can't understand why we are pitied, even though we are visibly enjoying ourselves.

    I've had this with all three of my pregnancies, which basically makes me a steel woman! With fierce wheels and abilities! And now that I've (once again) got my shit together and able to walk more or less as I used to, even though many pains still remain, I still represent wheeled folk. I've got the knowledge and determination to use it for good. In the end, it's not that tricky - be interested in the person in front of you (or the person using your venue) and not the colour and quality of their socks. Sorry - wheelchair.

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  26. When I was doing my social year with disabled kids, that was about the first lesson drilled into me - not by the teachers, not by words, but just by being aorund the children: They are just kids. There are moments they have to work around their disability (sometimes by themselves, sometimes with our help) but it doesn't define them. During the first days or weeks, when one of us fell into some kind of "special treatment"-behaviour, they would look at us like we were idiots (kids can be very up front). By end of the first quarter, I think none of us did notice their disabilities in more than the technical sense anymore. Was a good lesson. (Sorry if any wording is off, English is not my first language)

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  27. This reminded me of the DS9 episode I just watched about a new ensign that was from a low-gravity world, so she had to use a wheelchair and cane when on the station. I believe it was called "Melora".

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    1. This episode came to my mind as I read the post! :)

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  28. When I was in my 20's, I needed to use the public bathroom. There was a line, and when it was my turn, I used the handicapped stall. While I was in there, a woman started screeching that someone was in "her" stall. She had cut the line and when I came out she rolled over to me, still screeching that I had no business being in that stall, it was reserved for her. I was mortified and from then on I was super nice and enabling to anyone I thought was handicapped. I was that person you described, Jen. (Not the inspo-porn person, though. That's was ruuude.)

    Fast forward 30 years and now I'm in community groups with several ladies in wheelchair and my husband owns his own business transporting wheelchair users to doctors and shopping trips and museums and family gatherings. I'm no longer an eye catcher or an enabler. Now I'm a friend and a co-worker and someone who will drive you to your daughter's birthday party or to that play you've wanted to see. Sometimes you can ask me to hold the door, sometimes you can hit the automatic button yourself because I'm carrying all the packages. And that lady who screamed at me when I was young and impressionable? She can suck it and wait on line like everyone else. She was a miserable person whether she had wheels or legs.

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  29. What a great post, Jen. People are thinking they are being kind, and they're being cruel.

    My son's best friend (since age 6, when he moved next door) B has a rare form of dwarfism and always used a wheelchair and it was interesting when he was included in our weekend adventures or vacations. For one thing, gifts rained down us, wherever we went, because people are especially taken by a child in a wheelchair. The other was that people tended to try to talk over B as if he wasn't there. And he was NOT HAVING IT, even if he was 7 or 10.

    B would LOUDLY, in his extremely reedy voice, disabuse them of the notion that he was not capable of speaking for himself. Today he's a slam poet, writer, and web designer and still takes no shit from anyone. Checking his social media, he's TheBSG on twitter and (OMG!) 3ftdick on instagram.

    Dying.

    Thanks for the post, which I believe will offer a new perspective to a lot of folks.

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  30. Having Stacy as my sister has molded me to always strive to be kind, no mater who you are or if your battle scars are visible, and I try not to be terrible like they were, but sometimes I feel like I probably messed up, just because I don't know what they're going through. Humans make mistakes all the time. The only way we can learn from mistakes is making them. (Or reading about the ones others make!) The only way to make fewer mistakes is from experience. It's just cringy until they learn. And miss Chris has certainly provided for All Of Us a situation where grace is needed. (But ughhh, that karaoke singer was extra annoying.) I guess my point is that we can work on this together, as a family. :) Thanks for the post!

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  31. As the big sister to a wheelchair user, I figured that offering a helping hand to other mobilty-challenged* adults was simply being nice. Then I learned a lesson about phrasing, when the man I asked, "do you need help?" let me know in no uncertain terms that he could get the door for himself. I apologized and politely explained that my sister would have needed help navigating the entrance, and I meant no offense.

    Now I ask, "would you LIKE some help?" -- yes, one word can make a difference.

    *I hope "mobility challenged" isn't offensive. I use that term to describe my sister who uses a wheelchair because of being born with spina bifida; my father who is 88 and has cascading spinal fractures and peripheral neuropathy in his feet; and my mother who still hasn't regained full mobility since a stroke 5 years ago. I am the caregiver for all of them and try to find the line between offering needed help and coming across as bossy.

    As a fellow design geek, I love your shirts, Chris!

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    1. Firstly, thank you kindly!

      Second, wow, that's such a cool tweak you took on in offering help and the phrasing of it, and you took it in and on like a boss - that's awesome! I personally don't parse the phraing much on help offers but there are other people with disabilities who do and I respect that completely.

      The language has changed a lot since I was a kiddo on wheels - back then it was basically "handicapped" or "physically impaired/challenged." In general the term I see used and accepted most often now in the community is simply "person with disability/disabilities," or just PWD, with specification if a PWD chooses to give it. Most often I just find myself saying "I have cerebral palsy and use a wheelchair full-time" if that info needs to get passed along. :)

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  32. Man, you know. . .sometimes I have to really appreciate my mom, who taught me to treat everyone with the same respect, regardless of age, color, impairment, whatever.

    Thanks, Mom!

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  33. Good grief, all this hand ringing and twisting ourselves into pretzels and wondering if we're using the "correct words" in order to no offend someone is getting out of hand. It's absurd. How about we just be gracious and move on? How about we stop worrying so much about offending and the offended stop being so offended. All of this misplaced outraged is stifling us as a society. "Oh my did I use the correct word"? Give me a break. Say what you want! No one has the right to not be offended. Good lord!

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    1. If you do not find yourself being described with words that are offensive, good for you. Not everyone has that experience. "Why can't we ignore these things and just all be nice to one another" is what people say when no one is going to assume that they don't belong or are not inferior. That is privilege.

      A person who does not have that luxury, who maybe has to continually fight to not be described as less than or inferior, should not have to stop advocating for their dignity/adjectives because it offends or frustrates you.

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    2. We're all just trying to be nice to each other. I don't know why you're so upset by it.

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  34. There's a YouTube channel I follow by Annika Victoria, she does sewing refashions and tutorials, mostly on thrifted items. She also happens to use a mobility aid frequently. On her Instagram https://www.instagram.com/littlepineneedle/?hl=en she's pulled together a community of people trying to fight the stigma and has started the hashtag #babewithamobilityaid She's young and her personality is awesome, I highly recommend both :)

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  35. Some people are just trying to be kind. I don't know how many times I've offered to help anyone at the grocery store in a motorized shopping cart reach a high item. And I'm thankful to the tall guy at Academy who helped ME get a shoe box that was out of my reach. Thank you Mr. Tall Guy.

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  36. I use a cane to walk (my spine is full of metal and angst) and just yes to all of this! I'm in my 20s still, but look younger than I am due to being 5' and freckle faced, and one of the most difficult things about becoming disabled (for me) was the way people started ignoring, or being super condescending to me. Once I was having trouble getting out of a chair, and a man PICKED ME UP. Dafuq?! Thank you for sharing this, and letting more people know that mobility aids don't make us martyrs or scary or inspiration porn.....we're all just trying to live life out here.

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  37. Just want to offer some belated support here...we live in such a purity test age (as in, if you don't do something 100% in the way that is deemed correct, you get reamed for it) that it is hard to have the conversations that help us grow. The internet turns this up to 11. Along similar lines to what you're talking about here, a good friend of mine is blind, and I've learned so much from her (not in an "inspiration" way, but in a "holy shit look at how messed up our systems and assumptions are" way) and and have sometimes said/done the wrong thing...but it takes time and learning to get properly "woke," and it'd be much better if we helped each other to get there instead of piling on.

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