See Me

I didn’t send out our Holiday cards this year. There were about 400 million reasons, from my hand cramping while trying to write your address to me just being lazy. But I’m sort of mad I didn’t, because I need you to see me. See me as I am. As I am, right now, if I need to do anything that would require more than a walk around the block.

I need you to see me in a wheelchair.

Merry Christmas

We haven’t purchased one. I don’t use it on a daily basis. But more and more often, I’m finding myself using one. And I need you to see me.

I need you to see me, because when I’m in this chair, and my husband is pushing, and my daughter is riding on the back and my son is holding the arm on its side- you don’t see me.

You walk right in front of me, causing my husband to quickly slow down so he doesn’t run into your legs. You bump into the side of me, while I look at a map. You knock over my kids’ very first Butterbeer at Universal Studios Orlando because you didn’t seem to notice the woman in a wheelchair sitting in the shade, laughing with her children.

You even fail to say sorry when you cut me off as I am using all my might to wheel myself through a store and you rudely lean against the wheels not noticing there’s someone IN THE CHAIR.

I realize many of you are simply looking forward. Walking. Walking in a crowd and looking straight ahead and not looking down.

You don’t see me.

I’m shorter than my son sitting in this chair. So I find it funny you don’t seem to trip into him, yet can totally slam into me without notice, but maybe it’s because I’m not making as much noise as a child. Hmmm.

Then, of course, there are those of you that do see me.

You’ve given me dirty looks, wondering why this large woman with no visible illness was being pushed to the front of the line. Of course having no idea if she was just being lazy, or if she…say, has had multiple organs removed from a disorder that is ravaging her body and has gained weight from a very, very high dose of steroids to save her life. We know you just assume I’m lazy…but let’s just pretend it’s the other reason.

You’ve also kindly held a door for me. And have looked me in the eye as you pass. Some of you have even smiled. For that, I thank you.

Which is why I need you to see me…because too many of you don’t.

Comments

  1. My son has the same problem. People don’t even see him when he’s standing right in from of their face.

  2. Front of his face. Damn Ambien.

  3. Erin –

    I see you !

    I think of you often…. ((Hugs)) to you for your strength and courage. I am honored to say I know you (even if its only through Twitter and facebook).

    Much love and positive healing vibes coming your way!

  4. I am so sorry that you have been bumped and knocked and ignored and all such nastiness. Ignorance and judgement are terrible things. You know, if I saw you, and when I do see people in heelchairs or with other disabilities, I smile and say hello and if it looks like it is needed, I offer my help. I wish people could be more kind, even if just because they know that it could just as easily be them in that chair. It would be better if it were because they were just awesome people though.

  5. We see you, Erin! And all the love around you. xo

    Suckit Lupus!

  6. Though I can’t fathom the hell that Lupus is, I was in a wheel chair for more than six months with a bad knee injury. I was ignored, stepped on, and judged for being the fatty in the chair. Believe that I will always see you and love you.

  7. I think you need spikes on your hubcaps and some laser shooters out of the armrests. Ooh and while we’re at it stick a couple of release buttons on the handles for whomever is pushing at the time.

    Yeah, I wish I had that stuff when pushing my mom around Europe and she was looked upon as “the fat American” (we heard someone say that).

  8. Amen. I only spent two days in a wheelchair, and I was in tears over the lack of compassion I experienced at the hospital — at the hospital, no less! — and the way that no one spoke to *me* anymore, but to my husband who was pushing my wheelchair. It changed my views of disability forever.

    I love this post, and the picture of you, for so many reasons.

    Off to post on FB.

  9. I’ve always seen you and I continue to see you and those that don’t/can’t is because they don’t see the essential things in life to begin with… because you, it’s impossible to NOT see-feel-adore-love a lioness like you!

  10. The people who don’t see are missing a beautiful woman.

  11. Theresa Hissong Seid says:

    I don’t know whether to same sorry or just scream for you.

  12. beautiful!

  13. OK I’m balling. I see you. I am you in a small way. I have been battling a horrible ankle condition. Three major surgeries in two years, too many drugs to name, side effects a plenty, 100 pound weight gain, and very limited mobility. I have permanent nerve damage and a very painful pain syndrome now that keep me from doing things I love with me very active three year old son. We have been wanting to go to Disney for a while, but I know I will need the chair. I kept putting it off until I wouldn’t need it, and now I realize I always will. So it’s the chair or no Disney. Invisible illness is so tough, so much judgement and assumptions. I think I look like I am in the chair b/c I am fat.
    You are inspiring Erin. You really really are. I feel like such a whiner and complainer when I read your tweets/posts. No matter what is going on you find the silver lining, you fight. I am going to find my fight…I lost it amongst can’t.

  14. I see you.

    And I will make a bigger effort to see everyone in a wheel chair.

  15. I love that photo! I am proud of you for using the chair when you needed it. I know how hard it is to give into it. I also know how much more energy and time it gives you focus on the kids and enjoy the day. I really liked following your vacation on Twitter. It made me feel like someday I could do that with my family.

  16. I see you.

    I see you everyday.

    On the bus, at the store, coming down the sidewalk. I hold the door and ask you how your day is. I wonder why you’re in that chair. I wonder if you’re jealous that I’m not. I never assume you’re lazy. I don’t know anyone who would choose to be wheelchair bound.

    I see you.

  17. I see you, Erin. And I hear you.

    And most of all, I love you.

    A million hugs and more while you fight your way through this.

    xoxo

  18. I experienced the same thing with my sis in a wheelchair. We went to a trade show for handicapped equipment/lifestyle (yes, they have those) and the van conversion salesman didn’t address my sis, but her husband. He pointed out helpfully, “If you ever want to sell one of your converted vans, you might want to talk to the person who is going to be using it, and she’s down there in the wheelchair.” Then my sis schooled him on how to squat down or sit, not loom standing over the customer so they have to crane their neck. And this guy was SELLING to people in wheelchairs.

    The other thing that amazed me (well, many things amazed me but this one especially) was that, since they lived in snow country, all the buildings had vestibules. So I would open one door and have to push the chair thru, holding the door open with my foot or butt, and then try to get the inside door open…and people would just STAND THERE LOOKING. Like they couldn’t freaking open a door for us. They would wait til I opened the door and then squeeze by us. That taught me to leap up and hold doors for people with canes, wheelchairs and strollers.

  19. Very well written! You have put into words what I feel and experience most times I go out. Thanks for writing this, it’s good to know I’m not the only one who is “invisible”!

  20. habanerogal says:

    I have two things in my corner that help me believe that if we were randomly interacting, that you would have a positive impact even in your chair. The way you have raised your kids to be so compassionate would be noticeable the interactions between all four of you sizzle with connectedness.
    I have worked in a rehabilitation hospital for 4 years now and all of the patients that come there whether for stroke, amputation brain injury or other conditions they are my heros. Many a tear of joy

  21. I still remember a New Year’s Eve we spent in New Orleans. It was my Mom and her sister, who had lost her leg in a train accident when she was 8. She also had a heart condition and so when she traveled, usually used a wheelchair. The three of us had spent the evening on a cruise on the Mississippi. When we disembarked, there was a line for taxis.

    We took our place in line and waited as down the driveway cabs would arrive and passengers would get in. The line moved forward and orderly and finally, it was our turn. As the cab driver slowed down and approached, he saw my aunt in the wheelchair and made a u-turn and sped away.

    Don’t fool yourself. Those people saw you. A person in a wheelchair is a reminder of how fragile life is. It’s a reminder that we age, we can be forever damaged by an accident or suffer an illness. If they seemed to be ignoring you, it was most likely because humans don’t like these reminders, especially when they are somewhere trying to escape those reminders. I’m not trying to excuse the bad behavior of these people, just trying to explain it.

  22. when i was pregnant with each of my children, i spent multiple months on bedrest, in a hospital. a few times, they let my partner take me out – once to a Leonard Cohen concert, bless them – in a wheelchair.

    the concert was amazing. but the experience of being wheeled around in a throng of half the people in the city that i knew and having almost NOBODY meet my eye? a very different kind of amazing – it left me amazed. and changed, and far more aware of what it means to be rendered invisible.

    great post – thank you.

  23. Laura Stadler says:

    I’m both saddened and made furious by this blog post.I always “see” the people in the wheelchair, as I’ve been there myself a few times. The way people treat the disabled can be infuriating. I’m an oxygen patient & very large thanks to 150 extra pounds gained from that damnable wonder drug Prednisone…I was already fat before I took the stuff, and am finding it very difficult to lose that weight thanks to the limits imposed by the lung diseases that nearly killed me. When I walk into a store that has those powered shopping chairs, I usually get asked if I want one. Unless I’m really feeling ill, I say “no” because I get tired of the dirty looks I get for driving around in one. It always surprises folks that I would choose to walk, hauling that extra 9lb O2 tank in a shoulder bag, rather than ride. I never assume that someone else is just being lazy for needing that help, and will ask them if they need help if I can be of any assistance. I hate that I’m saddled with the tank(had to give up carrying a purse or I’d have 16lbs of stuff to carry), and that people assume I’m just on it just because of my being drastically overweight…even my damn pulmonary Dr.

  24. I see you Erin. And am always touched by your strength and courage. Having a son who has been in a wheelchair for the past 12.5 years, I also feel your pain. Aisles too close together in stores. People parked in the handicap space because they are “just going to be a sec” or parked in the hashmarks (where I need to put the wheelchair to get my son out of the car) because “it’s not like it’s a handicap spot” and all the rest of it.

    Get yourself one of those fancy sparkly Zippy wheelchairs. Pop wheelies. Get light-up wheels. Carry a cattle-prod in your lap. Live loud.

  25. I wish more people could/would see you. And realize how amazing you are.

  26. I see you Erin.

  27. Queen of Snark says:

    Thank you for your eloquent post. Too often it’s too easy for those of us who are whole in our bodies to forget about those who are not.

    You are an amazing person to be going thru what you’re going thru. I wish you all the best. I know I would probably be the nasty wheelchair person as it would be hard for me to bite my tongue when encountering these asshats.

    I think a nice loud airhorn would help folks “see” you better! And maybe a big spotlight. But maybe that’s just me!

  28. Great post Erin. I hope everyone reads it and looks at things a little differently

  29. A nice “Scream it from the rooftops” statement!! Thank you for every person who feels invisible but doesn’t have the voice or audience to be heard! Or seen. Thank you. I see you & I truly appreciate that you share your life’s journey. And yes lupus should Suckit!
    Be well my twitter friend!

  30. I see you
    I hear you

    and I will pass this along to all those who don’t.

    Beautiful post

  31. I’m thinking your calling may be to give people in that position a voice (?)

  32. Even though I already knew from your tweets and FB what was happening, this post still brought tears to my eyes. I’m so sorry that you weren’t seen (I’m guessing it was more true in Universal than at Disney, too).

    I don’t remember ever looking at someone in a wheelchair and thinking poorly of them; nor do I think I’ve ever ignored a wheelchair or the person in it, but just in case, I will definitely be more aware than ever. A wheelchair = illness in my head, I can’t imagine a case where anyone would think someone was in a wheelchair for fun or laziness. But then again, there a lot of things in this world that cause me to shake my head.

    You’re amazing, and hopefully your voice can raise awareness.

  33. I see you. I’m one of the people who actually talk to you. I’m one of the people who reach things in the grocery store that you can’t reach, I open doors you can’t, I ask if I’m in the way or offending you by offering you help.

    I’m the person that rants to the people I”m with when I see some idiot park in the handicapped spot that don’t need it or are so close to the spot that those who actually do need it can’t utilize it.

    I know my children understand that and I know that my children actually do see you, too, and everyone else like you.

    Some people don’t recognize what isn’t in their life and they are the losers for that.

    Compassion for everyone. Isn’t that what we’re supposed to do? Help our fellow man? Too bad we’ve lost sight of that.

    I’m sorry you have to go through that.

    You should have sent that card. Send it now – for Easter or Sunday or because it’s Tuesday. That is a wonderful card.

  34. I see you, and the inspiration that you are. Thank you for sharing your experiences with us, especially this particular one. The world needs to hear more from people in your position, as there are also many in similar circumstances who are unable to share their own stories.

  35. I see you.

    And on the other side of the country, I will SEE my fellow people in wheelchairs and other external signs of disabilities or medical treatment – really see them, and not their trappings.

  36. My heart goes out to you for having to deal with Lupus. My mother had a very rare condition – neurosarcoidosis – that was compared to Lupus and MS as to the effect it had on her body. Prior to her death, she hadn’t been able to climb stairs for many years. So, we’d use a wheel chair when we absolutely had to get her up a flight of stairs since elevators weren’t common at a lot of apartment complexes in Florida.

    She had a handicapped permit for her car, which earned her many diatribes from ignorant people who assumed that – since she was walking vertically with no apparent physical disabilities – she was able-bodied and abusing handicapped spots. These people didn’t see the time that her muscles gave out on her 10 feet from her car, causing her to fall and bruise her knee. She ended up in a brace for 12 weeks, which didn’t help her already limited mobility.

    Diseases like Lupus – and it’s cousins – need to be brought out into the forefront of people’s minds. They don’t understand the impact on a person – physically, mentally or emotionally. The devastating effects of the drugs that treat symptoms of a disease that cannot be cured. The constant need to be reassessed and trying every method possible to get better. The depression that ensues because of the overwhelming number of doctors and visits to doctors, some of whom don’t even see the patient – or who fire them because their problem is too hard to treat (yep, that happened – more than once).

    Thank you for sharing. I hope people take this to heart and really see you now.

  37. Wonderful post. Thank you so much for sharing this. It is just really horrible that you’ve been made to feel unseen.

  38. Reading posts written by bloggers in wheelchairs has changed my perspective greatly. I encourage you to read Dave’s blog http://davehingsburger.blogspot.com/

    As you said, I feel dismayed and hopeful all at once!

  39. I see you: as one who is often unseen, I see you.

  40. Such is the life for those of us who are in wheelchairs on a continuous basis. Nobody sees you. They walk in front of you and if you happen to knick the back of their ankles because they were inconsiderate and cut you off, then they shoot dirty looks at you, as if you hit them on purpose. They try to touch your wheelchair, hit it, lean on it, prop their feet on it, etc. not realizing it is a part of you, almost like an extension of your body. Nobody would lean on the shoulders of a stranger they never met, but it’s acceptable to lean against the wheels or handlebars of a stranger’s chair…really, it’s not.

    This is really a societal issue. Until society starts treating those of us in chairs like human beings and not second class citizens, nobody will see us. They live in the illusion some things are better left unseen. Unfortunately, in this case, it means they ignore the fact that certain human beings exist. It’s not fair. It’s not cool. It just is.

  41. We actually had our stroller completely knocked over at Disneyland (thankfully, my husband was holding the baby), and no one bothered to stop to apologize or help.

    The world needs more compassion and understanding.

  42. I see you, Erin. I can’t believe that others don’t. I couldn’t imagine walking right into someone and never even managing a simple apology. It hurts my heart that there are people in this world that can do that and have a clean conscience.

    I see you.

  43. Amen.

    As someone who is wheelchair-bound, this spoke directly to my heart. The transitional period from walking-to-wheelchair was difficult for me too, but then again, I think it would be for anyone in the situation.

    And people can be so blind, ignorant, and thoughtless sometimes. They seem to forget that the wheelchair hasn’t taken over the PERSON that you are: a mother, a woman, a wife. We are so much more than wheelchair users, so much more than a disease. *hugs*

    (P.S. I found your blog through a link on Dead Cow Girl’s blog.)

  44. I see you.

  45. The is beautiful and heartbreaking and rage-inducing. Thank you for sharing it.

  46. Yes. I often have to use a scooter now because of an injury, and YES. Excellent post.

  47. I need a wheelchair due to fibromyalgia for walking long distances. My kids asked to go to Walmart one night and I said yes but you will have to push me in a wheelchair. They shuddered and said ooooohh gross, no! They are 10 & 12

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  1. […] This post was mentioned on Twitter by Erin Kotecki Vest, Becky McCray, Glenda Watson Hyatt , Karen Sugarpants, Wonkess and others. Wonkess said: RT @QueenofSpain: See Me http://queenofspainblog.com/2011/02/24/see-me/ My post on being in a wheelchair […]

  2. […] not talking about people like Queen of Spain who are legitimately in a wheel chair. I’m talking about the people who discredit the […]

  3. […] 3. ┬áSo does Erin. […]

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