Them, not You

I walked into the house of worship.  Meredith was parking the car.  The place was crowded, the service underway.  I was a little unsteady, leaning heavily on my cane.  An usher stood a short distance from me and kept looking my way.  I looked back at her, thinking perhaps she would locate two seats and guide me there.  Meredith seemed to be having trouble finding a space.  My knees were shaking slightly by the time she walked in.

The usher hurried over, asking, where would he like to sit?  Our eyes did not meet nor did we.  She just looked away as she found us two seats together.  I held my tongue.  This was a house of God, after all, though a silent voice suggested this was an appropriate place for raising questions about how we treat each other.

Situations such as this have been raised in Journey Man recently.  From Amy:   “When I’m out in the world, people talk to the person I’m with, not me. At any time, something could happen that means I need a stranger’s help. I could go on.  I’m still learning how not to let it all mangle my ego. I’m also still learning how to laugh at myself. A red wheelchair helps.”

I wonder if Amy is serious about the color of her chair.  That would be pretty cool.  What is very uncool is the way people in wheelchairs are treated by the chronically healthy.  They are not sitting by choice.  I use a wheelchair at airports or other venues that require traveling a distance.  Something happens to my psyche as I ease myself into that chair.  I want to be invisible, which is exactly what happens.  People do not see us.  They just see the wheelchair.  We are extensions of those devices.

I never get used to Skycaps letting me sit, pointed away from everyone else in our party.  I am isolated, unable to hear what is being said.  Once, a Skycap at JFK kept us waiting at an arriving plane, emptying fast.  When he arrived he said nothing, pushing the chair up the jet way  We merged into the passenger flow and abruptly stopped.  The guy simply walked away, leaving us stranded. We stole his chair and went on our way.

We are only baggage, after all.

I learned that at Disney World, as attendants looked through me, only addressing Meredith.  I had become, he.  Even those of us who must lean on canes are objectified.  “I have three canes here, the Amtrak agent yelled into his walkie-talkie, as a crowd lined up at the gate.  I went to hand her my cane.  I told that story on Imus in the Morning. An Amtrak executive freaked out and tracked me down, falling all over himself with apologies.  After the fact doesn’t cut it.

We are not going to change American discomfort with us.  Put Indiana Jones in a wheelchair and let’s see what happens at the box office.  Illness and disability in a culture that celebrates physical perfection are not in fashion.  Surprise.  Just do not ever, ever, make the mistake of believing this is about you.  It is not.  It is all about others who have not figured out they may fill your shoes someday, sitting or standing.

32 Responses to Them, not You

  1. Judy May 1, 2014 at 3:19 pm #

    I’ve often said we become much more sensitive to others’ circumstances or needs when a similar circumstance touches our own life or that of someone close to us. That’s unfortunate…because some people (and all of us to some extent), seem especially harried and gifted at not thinking before they talk. Richard, what a gift you have to communicate via the written word! My husband was recently diagnosed with MS, in his 60s. Your blog posts would certainly make a great sensitivity primer!

    • Richard May 1, 2014 at 8:22 pm #

      I agree. A personal connection can make a difference.

      Best,
      R.

  2. David May 1, 2014 at 5:28 pm #

    I agree that people need to look differently at someone that is handicapped.I guess its a fact that when we are in a chair ,people are looking down at us.We might be smart or charming or both. The person looking will never know if they continue to look at just one thing, the chair.Black or white, pink or blue every single human has potential and should not be judged just by vision or lack there of.

    Maybe people would understand more if the wheelchair actually made us taller than the people that cant see us.

    • Richard May 1, 2014 at 8:27 pm #

      Or if their brother, sister, husband or wife were suddenly sitting, Sad but true.

      R.

  3. James May 1, 2014 at 5:33 pm #

    I’m wondering Richard, what does Dr Sadiq have to say about all this “stuff” you are going through?

    • Richard May 2, 2014 at 7:43 am #

      We talk frequently. He does not make connections (I do) and we keep going.

  4. Stefanie May 1, 2014 at 5:51 pm #

    Somehow, I didn’t think this kind of stuff happened to you…lol.
    I went from being 5’11” to wheelchair height. I’m always shocked when people introduce themselves to me or ask me directly. I do have a 4 year old that gets much attention because he rides on mom’s lap. That causes quite a spectacle…
    I don’t let the chair stop me. And, I’m good at saying, “excuse me, hi, I’m Stefanie, could you…”
    I’ve had many doors (literal) and elevators close on me, leaving me to ask the next person that dares to walk by…haha.
    What I also have noticed though, is that people are mostly oblivious to others needs, no matter who is in their face.
    Anyway, I enjoyed your post and can relate.

    • Richard May 1, 2014 at 8:30 pm #

      I agree. Others are oblivious. That is the point.

      R.

  5. Christopher May 1, 2014 at 6:57 pm #

    You can’t teach people sensitivity. It’s like talent, you either have it or you don’t. The majority don’t have the genes for it. Some people will go out of their way, motivated by shame or self interest. But they’ll forget soon enough as the altruism isn’t habituated. Being a lifelong observer of people, I have developed a keen awareness of purposeful ignorance… and it hurts. Not always, but it still stings many times and I end up second guessing my relevance in a broader picture. One of the worst is anyone I might find attractive purposely avoiding eye contact, or more inhumanely avoiding offering assistance. It’s not so much my ego that I’m worried about–that got trashed years ago. I’m more concerned with becoming too thick skinned and malicious. I share this universe with over seven billion other people. I won’t fare well having to avoid most of them, and there’s already too many misanthropes.

    • Richard May 1, 2014 at 8:35 pm #

      Smarter than I. Go forth and write.

      With respect,
      R.

  6. Jenny May 1, 2014 at 9:02 pm #

    Think back to before…….before our diagnosis. I would venture to guess we were one of “those people” who looked past the disabled. I know I was one of those people. I hate to admit that, but now I am the person to teach others. If someone looks past me to talk to the person I am with about me, I speak up immediately and ask them to deal with me. In doing so, I am teaching them how to deal or treat a person in a chair, or scooter or someone with a cane. I do this with the hope they know better next time and model that behavior to others when the situation presents itself. Will it change the way the world treats handicap people? Probably not, but I feel good about doing my small part to try to make a difference.

    • Richard May 2, 2014 at 8:07 am #

      Jenny-

      I think small steps eventually get you there. That is all we can do.

      I was 19 when I learned my father had MS and 25 when I was diagnosed. I cannot remember when disability was not on my radar screen. Lord knows where my head would have been.

      Best,
      R.

  7. Carol May 1, 2014 at 10:06 pm #

    About 10 years ago I overheard a coworker making arrangements with I don’t who to have a wheelchair ready for her husband when they arrived. My coworker said cheerfully that he would be “traveling in style.” I loved that! Since then I have used a variation on that line to initiate conversations with countless people in wheelchairs at stores, church, etc. I simply say with a smile, “I see you’re traveling in style!” With very few exceptions, I get a smile back and a snippet of conversation. What fun! It’s a way to recognize them, and hopefully add a little fun to their day. I had no idea how much that little thing could matter until I read this tonight.

    • Richard May 2, 2014 at 8:09 am #

      Nice.

      R.

  8. Carol May 1, 2014 at 10:26 pm #

    I forgot to add that it adds some fun to my day, too!

  9. Desinie May 2, 2014 at 3:41 am #

    Perception is everything. I remember back in 1999 I was waiting on a lumbar puncture in a hospital room. This would confirm or deny an MS diagnosis after 9 months of testing and many different doctor appts. and tests. I heard nurses talking loudly in the hallway. They called me the ” spinal tap” in room 123. A few minutes later one of the nurses came into my room and asked me my name. I sarcastically told her my name was, ” Mrs. Spinal Tap.”Being a nurse myself I remembered being taught never to call any patient by their affliction or anything other than their given name. Too often people seem to lack empathy and your title of your posts say it all very well although, it can be so hard to remember when we’re in the moment.

    • Richard May 2, 2014 at 8:13 am #

      Those remarks are thoughtless, not mean. But I think they reflect a lack of sensitivity.

      Best,
      R.

  10. Betty Moody May 2, 2014 at 7:00 am #

    I suppose I am a curiosity. A grey-blonde bob, with a station wagon full of leather, a bale of hay, trekking poles, and a wheelchair; spurs permanently strapped to scuffed boots, (this will be my last pair). I’m heading to the stable. I still ride my horse. MS has been my shadow for two decades. Everything is getting harder, and my world seemingly smaller, but the barn remains my outer galaxy. It takes two of us to groom, and tack and get me in my saddle where I am more comfortable than I am in my own bed. Here I can walk, and explore, and reconnect the dead zones of my body. Movement and sensation. It’s not a dream. I have amassed a wonderful collection of friends, and supporters through my equine days. Some were just kids when we first rode together. Adults now, with children of their own they tell me I am an inspiration, and a living, meaningful example for their kids. Others, new to this kooky woman who keeps showing up at the barn are kind, and accepting with gestures that signal deference and care. We are a tribe we horse people. The few who are “uncomfortable” are just that. Uncomfortable. Good luck in the real world folks.
    I cherish time with the kids the most. Especially the little ones; some as young as five or six who are sitting a horse for the first time. I imagine that a lot of their feelings are like mine these days. Anticipation, excitement; impatient to be helped; the smells, and tactile impressions, so unforgettable. We seem to bond with that.
    A clumsy tumble one day sent me to the floor, brushes and gear flying in all directions. I rolled to my side, and climbed my way up the stall wall unhurt, and praying that no one saw me. Out of nowhere a tender child appeared. “Are you ok?” he asked. “Yes dear, I’m fine, I’m sorry if I scared you”. “Don’t worry, he said. My friends and I do that all the time.” Just one reason I keep moving forward.

    • Richard May 2, 2014 at 8:16 am #

      Amen.

      Best,
      R.

    • Amy Corcoran-Hunt May 2, 2014 at 4:19 pm #

      If you’re going to be a curiosity, then be one! Good for you. Life is short.

  11. Amy Corcoran-Hunt May 2, 2014 at 7:06 am #

    Amy is serious about the red chair. Triathlon Spinergy rims too. It’s my ride.

    People are dunces about how to treat disabled people. They need a lot of help. It’s hard to always be in the mood to provide it. But the alternative? Oh, my poor ego. My ride sends a signal (the signal would otherwise be “tragedy!”) and reminds me that I’m still fun (easy to forget). It works sometimes, which is better than nothing.

    Get a bitchin’ cane.

    • Richard May 2, 2014 at 8:19 am #

      Amy-

      Good for you. You are very smart.

      Best,
      R.

  12. MB May 2, 2014 at 6:20 pm #

    I’m sorry but I had to come back to the the comment above regarding “traveling in style.” When people make comments to me about being envious of my scooter or if they challenge me to “a race”, I cringe because I view it as being patronizing. I’m a 55 year old woman who would much rather be walking in a stylish pair of shoes then driving a stylish scooter.

    Just yesterday, a coworker who broke her foot stopped by and said that we were in the same boat and she wanted to commiserate with me about our shared lack of mobility. Never mind that the difference between us is that she will heal and walk again. I guess it made her feel good, though. Yeesh.

    • Richard May 2, 2014 at 9:40 pm #

      MB-

      I get it. I suspect these are well intentioned people who are reaching out clumsily and do not have a clue. That is why you have two ears – incoming and outgoing. Please. Protect your sanity. Their problem. Not yours.

      Best,
      R.

      • MB May 3, 2014 at 12:23 am #

        I hate this so much. I think when my invisible disease started to become visible, I became less and less tolerant of people’s reactions to my limitations. I can barely stomach comments suggesting it’s all about attitude or phrases such as “I may have MS, but MS doesn’t have me.” MS has me by the short hairs and won’t let go regardless of my attitude.

        I’ll try to work on preserving my sanity, but there’s a chance that train may have already left the station. 😉

        ( should have used “than” instead of “then” in first post)

    • LK May 21, 2014 at 10:19 am #

      MB-
      A stylish pair of shoes, you say? I am 38 years old and still dream of the high heels that I had to give up when I was 25. With all the “losses” of myself, it’s such a little thing. Even so, giving them up has continued to haunt me. I do have a pair that I put on once in a while, I hold the wall for balance, stand, take a couple of painful steps and then remove the heels. Why? I think it’s one of the only things lost that I can have back for just a moment. All the rest of it… I haven’t found a way to summon a moment of. When I stand up and see those heels in the mirror, I appreciate my short trip back in time and smile.

  13. Jeff May 3, 2014 at 1:41 pm #

    The most important thing is to be comfortable with yourself. I know, obvious, but sometimes not easy, especially when “what” you are today is not the same as last year, or next year. Last year was tough for me. For the first time, MS started to affect my mobility day to day. It was difficult for me to deal with. I wanted to hide what I was going through and started to withdraw – avoiding situations that could expose me.

    After a good deal of counseling, I am a new man. I can deal. If I need to use a cane, I use it – I got a “cool” one :). I really don’t care what others think. For me, getting to that point was the tough part, but I like who I have become, and to me that is all that really matters.

    • Richard May 4, 2014 at 3:32 pm #

      Jeff-

      Welcome to your own sanity. It evolves and you have reached your destination. Screw the others. The chronically live in their own world. Love yours.

      Peace,
      R.

  14. Kim May 3, 2014 at 7:40 pm #

    I just returned from a trip to Disney World. It was a reward of sorts, to myself, my 3 daughters and supportive husband. After a bad relapse in December, followed up in January with a plasmaphoresis treatment,prescribed by Drs. Sadiq and Sylvester, I was hospitalized for almost a month. My girls, especially my eldest, who fortunately was home for winter break from Quinnipiac University, managed to run the household as if I were actually there. I am so thankful that my 9 year old had her big sisters taking such good care of her so that I could focus on recovering and my husband could be by my side.
    We were all looking forward to a joyful celebration as the plasmaphoresis worked and got my up and walking again.
    While I can manage walk short distances, strolling through hot, crowded parks is not something I am up to yet. We rented a wheelchair so that I could enjoy every moment with my family.
    Having been to Disney numerous times I have always viewed them as handicapped friendly. However, on this trip our experience was quite different. Due to the abuse of the system by many, they have changed their accommodations for those of us with challenges. I don’t expect to move to the front of the line, or even have ride attendants offer me assistance. Being in the wheelchair was accommodation enough to help me withstand the long lines. What I didn’t expect was the seemingly discriminating way we were treated.
    After waiting in lines, just like every other guest, my party was made to wait longer once we got to the front of the lines. I can easily transfer from the chair to a ride, so we required no special assistance from Disney workers. We made this very clear. However, we were consistently asked to wait, sometimes 20 minutes more, as many others (who were behind us in line) were put on the rides. It was as if they have been instructed to ensure that people in wheelchairs or scooters not look as if they were being given special privileges. I’m sure they are trying to dissuade the abusers from taking advantage, but instead we left after a week feeling no desire to return.
    At one point my family and I were boarding a boat back to our hotel. My husband pushed me to the entry point, I got out and walked to my seat so that the wheelchair didn’t take up too much room, as there were many patrons waiting to board. Another passenger, proceeded to curse me out, even saying she should have just tripped that b****! Of course that upset my girls and many others seated on the boat. We chose not to respond to her because she seemed crazy, and you can’t fix crazy!
    So being in the wheelchair, even on a temporary basis was quite disturbing. The dirty looks, the snide comments and the much less than preferential treatment by Disney employees, made me think about others who are constantly confined to these chairs and using other assistive devices. I understand your feeling inconsequential when not being addressed with your cane in your hand. Somehow, having difficulty walking, translates to some people as having
    a mental deficit or other impairment. It’s frustrating I know, and not likely to change, I know that too!
    My only regret is that you didn’t whack the Amtrak lady with your cane to wake her up! I’m pretty sure I will not return to Disney, but if I ever do, I surely won’t be taking Amtrak to get there!
    Have a nice weekend Richard! Here’s to hoping you have a more pleasant experience in God’s house!
    Kim

    • Richard May 4, 2014 at 3:43 pm #

      Kim-

      I don’t visit that house except for events. And I never will visit Disney World again. My kids are grown and gone. I have my horror stories about the Magic Kingdom, too. Frankly, it is magic that they lure anybody there twice.

      Remember, you were born with two ears, incoming and outgoing. Let it go. Your sanity is more important than what any foul mouth will utter.

      Best,
      R.

  15. Laurie May 5, 2014 at 9:29 am #

    I was at an airport and spoke to the husband of a woman in a wheelchair, asking if I could help. Then I returned and apologized to the wife for not addressing her directly. They were very gracious. Now my Mom uses a wheelchair and I am the one being spoken to, I tell people my Mother speaks English. At a (former) Doctor’s office, the Dr. asked “what did she ..” I replied there are two shes here, which one are you talking too. I am not gracious with ignorant people. Having been in both situations, I have some hope for people. Just not holding my breath,

  16. Nik July 16, 2014 at 9:36 am #

    I have the time and I’m reading all your older posts today. I love this one. I have always been a caregiver. It’s been hard this past month becoming the one who needs caregiving. I always thought of myself as the most patient and caring person that anyone could be. Now with my current situation of having what they call CIS (yet I know now that I have had MS for years, just Undiagnosed), I am seeing things with a new perspective. I am slower and I am having trouble doing anything at the moment. I hope I have always been patient and understanding with people experiencing the same. My husband says on the outside I don’t look sick and people probably don’t understand why I can’t move along quicker and the get pissy with me. I sure hope I never did that to anyone, but who knows. Until you experience this, you might never know what a person is going through. That is the one small gift I already see about this disease. Compassion. So, that being said, my mission in life will be to awaken people to the limitations of others. To never judge, because you just never know what someone is going though. Even that nasty person who may say something rude, or the person who doesn’t speak directly to you when you have a limitation, they are the ones lacking patience or understanding. They need to be given the facts, who knows maybe they will change? We could hope.