Disability Chat: Feeling Like a Spectator of Life

Hi, friends. An acquaintance of mine who also has FA posted an article on her blog about adjusting to her scooter. I related to her experiences so much that I immediately hatched the idea for this post.

In her post (available here), Kelly talks about her first time at the mall with her scooter. She explains that she struggled to navigate her new device around all the obstacles in stores. She spent the most of the trip lingering around the entrance of stores while her friend shopped, too frustrated to keep trying. At one point, she snapped on an employee who offered her assistance then burst into tears.

My eyes welled with tears as memories flashed through my mind–memories from the pre-wheelchair days when I, too, lingered on the outside.

I had this feeling an infinite number of times in high school and early college. There have been so many instances where I felt like a spectator of life because of my disability–sitting on the sidelines figuratively and/or literally. Here are two examples–

Left Out of my Own Trip

Near the end of my senior year in high school, a few friends and I went to the beach for a celebratory trip. [Don’t worry; my mom came, too.] When we all went out to dinner the first night, one of my friends ordered a crab sandwich; she was surprised to see the crab still shaped like a crab when the order arrived. So naturally, she wanted to throw the already-cooked crab back into the ocean…

The beach has always been tough for me to navigate because shifting sand + poor balance= disaster. Darkness is also hard (I have to watch my feet to take the correct steps). But everyone insisted on going over to the beach to throw the crab back after dinner.

All of my friends and my boyfriend left me at the house to play on the beach at night and have fun without me on my own senior trip.

Left Out of the Party

Fast forward a couple years to the early days of college–

Parties often presented obstacles; they do take place in the dark, after all. One night, I rode to one with a few friends. When we arrived and parked, my friends jumped out of the car and started walking across the uneven front yard in the dark. I awkwardly called out, “Hey, someone help me!” And one of them begrudgingly returned to walk arm-in-arm with me towards the backyard.

When we got back there, countless people stood in small circles, drinking and mingling. My friends immediately merged into the crowd and left me at the gate. I knew that I couldn’t walk around the backyard without falling, so I crept along the outside of the house and used that to make my way to the backdoor, attempting to appear nonchalant the whole time. I got inside and found my way to a couch.

For who-knows-how-long, I sat there alone. Some party, huh?

Final Thoughts

In both instances, a person might think my friends were jerks. I don’t think they were being cruel so much as just unempathetic. In both scenarios, a person could neglect to consider how I feel because they don’t know what I go through. Also, many people are just too busy thinking of themselves to think of others.

If you have a disabled friend or family member, go out of your way sometime to include them in an activity or trip. It is nice for a disabled person to not always feel ignored or like a burden!

I have tons of stories in my memory bank for various subjects, so let me know if you found this format entertaining!

Thanks for reading! Have you ever felt excluded? Do you share your kindness with a disabled friend? Let me know in the comments.

37 comments

  1. Lily, those stories are heartbreaking. It sounds as though your friends weren’t intentionally cruel; just young, self-involved and not quite paying attention. Nonetheless, the outcome was the same: you feeling excluded.

    My son’s best friend became a quadriplegic at the age of 21 from a rare spinal infection. I was so proud of my son and all their friends’ support as this boy learned to navigate a whole new world — including him at every opportunity. Then, as often happens (and not only from disease or disability), some of those friendships grew apart over subsequent years as people moved elsewhere or had less in common.

    I guess my point is that some people will always see disability first and some will look at YOU. I think it’s helpful to be upfront about what you’re going through since they may be shy about asking, worrying that it’s intrusive.

    By the way, our quadriplegic friend is now 32 and married to a wonderful woman who trained as a nurse and manages to be caring and empathetic without treating him like a child just because he’s in a wheelchair.

    Liked by 5 people

    1. Alisa, I like how you described the friends in the story–young, self-involved, and not quite paying attention–there’s a difference between intentional cruelty and ignorance perhaps bordering on apathy. That ignorance can be cured by being up front as you say, but that also depends whether the person genuinely cares about you.

      I find it easier to advocate for myself and be blunt about my needs because I am older and thus more mature and experienced, but using a wheelchair (or any mobility device) vs. walking makes a difference. When I walked, the dynamic was different because A. what I needed was less specific (ex–I need to hold an arm in this situation, yet I walk to class on my own other days) and B. People didn’t quite take my disability seriously (ex–friend who knew about my disability throwing out the off-hand comment that I’m lazy). With Point B, I got a taste of how it must feel to have a mental illness and be told to get over it.

      Thanks for sharing that story! That is so awesome that your son stuck by his friends, and it always makes me happy to hear of a disabled person who lives a wonderful life regardless of the obstacles!

      Liked by 1 person

  2. Great advice to be conscious of the needs around you. I have a co-worker with vision impairment and I try to be helpful. The common things like grabbing a cup of coffee can be difficult so I’ll just offer to grab him one when I get my own.

    Liked by 6 people

  3. Great advice. I use a cane and get enough looks like what’s wrong with you. That doesn’t bother me but using my walker is more difficult. The Disabilities act should include all businesses but we know who important floor space is. Have a great weekend.

    Liked by 2 people

  4. Baby, I think the hardest thing in my life is knowing you were left out/left alone sometimes. This breaks my heart! Just so you know, i wouldn’t change one thing about you: nothing! But i wish i could change the world to make some things a little easier . This challenge has made us very open, very close, and very honest with each other, so for that i am thankful. Who could ask for a better daughter? You are beautiful, smart, funny, stubborn, kind, sassy, stylish, and outgoing. When i see you with those young kids at church, i KNOW you are changing the world for everyone who is differently gifted! So proud of you!

    Did you know that once when you insisted on going out on Halloween with your friends, and it was going to be dark with uneven terrain—- i was so worried about you that i went to a diner near the party; I explained my situation and i sat there for over 2 hours until you called and said you were heading home? I just wanted to be close by if you needed me.

    Love you to the moon and back!

    Liked by 5 people

    1. Reminds me of a some lyrics from one of my favorite gospel songs… “Can’t be mad at the things you been through, ‘Cause they built your muscle, Now you’re stronger than you’ve ever been, They can’t stop your hustle” 🙂

      Liked by 2 people

  5. We have our own disabilities in life from one point to another. But remember that we have GOD who is able to understand and to help us. GOD bless you more Lily and be a blessing to many 🙂

    Liked by 4 people

  6. I did like your format. And I will share a life story about my grandson. In 1st grade his best friend had to brain surgery for a tumor. From that day on every Sunday he would request prayer for his friend. But it didn’t stop there. At school when his friend still didn’t have his balance and had to use a walker, my grandson would stay in at recess and play with his friend. They went to a Christian school and at the end one was valedictorian and the other salutatorian. It was a blessing to see my grandson’s friend stand with him at my grandson’s wedding. They made each other better.

    Liked by 2 people

  7. Thanks so much for sharing Sister in Christ-Messiah Jesus-Yeshua!!

    I wan Born with my Sternum Fused too my Back bone, my Birth Defect is called “Pectus Excavatum“. My Entire Rib cage was rebuilt and I have Stainless Steel wires that hold my rib cage together. I have a Bad Ruptured disk in my Neck at C5-C6, and a very bad Ruptured disk in my Lower back that is pressing on two sides of my spinal cord, with not enough room for the nerves too go through it, its located at L4-L5. Please Read More about My Disabilities HERE ( https://kristiann1.com/2013/10/15/mydisa/ )!!

    Love Always and Shalom ( Peace ), YSIC \o/

    Kristi Ann

    Liked by 2 people

  8. That’s so hard in those circumstances they left you. I think it’s really kind of you to understand their position. As a friend who really tries to plan around my other friends and their needs, I don’t appreciate how you were treated and left out. I mean, when I was about seven if I saw a bowl of potato chips we apparently were having a “party”.

    That’s how friendship should be. Being there for each other. I never drank, but my best friend and I in college would have friend parties catered to a small group of our closest friends and we seriously had the best time in the living room chatting, watching movies, and eating food. I hope you are surrounded by that kind of support ❤

    Thanks so much for bringing light to this because it really is something we need to look out for, maybe people who aren't even our friends.

    Liked by 2 people

    1. That sounds so fun! I’m glad you got something out of these stories, and I hope it reminds people that we should look up from our phones and our own lives and try to really SEE people, which sounds like Jesus 🙂

      Liked by 3 people

  9. My little boy has multiple disabilities, so both he and I are often left out of a lot of “fun” activities. Sometimes it hurts because friends and family forget when they are planning events. Then I remember that God gives us our own journey, and often times it must be traveled alone. Thank you so much for sharing. It helps others when they know they’re not alone.

    Like

  10. Thank you for sharing your story ! 🙂
    I can only relate to what you are talking about even though I can walk. I have a disability of the arms, and as a child especially, I felt left out for so many things. My sister was able to do things that I so wanted to do. It wasn’t easy and I remember crying a lot due to the frustration, but growing up I realised that I could do way more than I thought, you just adapt 🙂

    Liked by 1 person

    1. Being left out is the worst! At least we know we are not alone in our struggles when we find others who relate to our experiences. Thanks for dropping by and sharing! 🙂

      Like

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