The Hardest Part

My Sister helping me get into bed at night. Thank you Katy!

The not walking, sucks. Not driving blows, etc. The list is endless. I am not a Negative person, though honestly, I have more reasons than most to close my drapes, climb into comfy clothes, and crawl, “no, excuse me,” be put, under my covers and not come out. The hardest part of having a disability is not being understood. No, I do not mean only my physical voice, which is very frustrating and should be added to my previous list. I am talking about people taking the time to understand what makes me tick.

A Wheelchair user in Motion

About a decade ago I was taught about person-first language. People, myself included, were speechless when simple wording about, or better yet, to a person can change the entire tonality of conversation. If you are unfamiliar with this concept; I am a woman with a disability, not a disabled woman. I know, right? Mind blown! I was amazed by how liberated I felt. Firstly, I am a woman. Secondly, I happen to have a disability. If this topic feels redundant, it is because it is. Every day in some way I am forced to prove that I too have the right not only to breathe but that I also benefit society in some way. Come to think of it, this initiative is much like changing the image for handicapped parking. I know you know what I mean, the image of a wheelchair user in motion. My conflict is not the initiative to “personify” people with disabilities; it’s that there is a need to. I support and agree with all movements that make people with disabilities more real and raise awareness, I just wish it felt more natural.

My sister-in-law is a Special Education teacher; her students are middle school children with severe disabilities. This is a poem written by one of her students. Mason is a 13-year-old wheelchair user. He wrote this with his AAC device, which he uses to communicate because he is nonverbal.

We Would Like You to Know
By M

We are sitting but we are not always sitting…
Sometimes we use gait trainers, walkers, standers, crawl, and lay down.
We are sometimes scared and uncomfortable…
We are not just taking it easy.
We are able to participate in sports…
We are not all athletes.
We are not runners…
We are riders!
We are not terrible… 
We are terribly smart.  
We are not broken
We are proud.

 

I do not have an English major (Accounting, Magna Cum Laude), but personifying people to me is really the redundancy. Why is there a need to make “us people” feel more like people? I am not my disability? It does not define me? Yet, my disability is listed as my occupation. It defines where I go and who I need to accompany me. The largest way my disability impacts me is it decides my friends.

I have heard comments, such as: being friends with me (or most disabled people) feels very one-sided or so much work. As I have said, “it is all relative”. What one person can handle or tolerate may be a lot more, but that is all about capacity. Being with a person with a disability in any capacity is hard, whether it is as an employee, friend, or even family. Try though, seeing it through our eyes, which I know is really hard and no one wants to, but force yourself. My employees, friends, and family view me as a burden. Being with me more than necessary puts them out and I, therefore, am not worth the effort.

Portrane asylum in the 1950s, The Irish Times

Next July, the disability community will celebrate the 30th anniversary of the Americans with Disabilities Act. That is awesome! I am so thankful for the laws and rights given to me. If you think about it, 32 years ago I legally could not meet my friends for our monthly book club. Public places did not have to have an entrance for wheelchair users, never mind a bathroom stall I could use. 30 years is really not that long ago, I was going into 2nd grade and people were fighting for general access.

The ADA Legacy Project: Moments in Disability History 27

At the same time, even 50 years ago our rates of survival were slim to none. If you were one of the “lucky ones”, you spent most of your life institutionalized. Out of sight, out of mind. In the period now where people are aging more and more in their homes, and science is advancing at a phenomenal rate. People with disabilities literally have to scale mountains and fly in the sky to be recognized. No longer is survival an accomplishment but I can’t always expect to be able to go to the bathroom. WHAT? I am confused. Are you?

Me ziplining!

I am not a negative person!! I am positive my life is daily work. I am positive that I am not fighting this battle alone. It is not a life for the faint of heart. Unfortunately, we all need each other whether as babysitters, drivers, or friends. But remember we all also have things to offer/ skills. Planning, research, experience, and organization are just some of the skills I bring to the table.  What skills do your friend’s have, that are complementary to your own?

2 thoughts on “The Hardest Part

  1. You are soo NOT a burden to me! Sometimes I feel like you might see me as such a slow learner when it comes to this stuff, but I am thankful you take time and patience to bring me up to speed. What you bring to the party – your witty personality & humor & freshness & honesty & intelligence – is of great value. Your hard won dignity & strength challenge me to be a better steward of my circumstances. We all need to ask for help – you inspire me to be more clear & organized @ it. It’s always a good day when I get to spend some of it with you – 🍀 lucky me that’s 5 days a week! Luv u ❤️

    Like

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