When You Are New to Life With a Disability

I am new to this life with a disability. Sometimes I am caught so off guard by the way people respond to me now, be it positive or negative. Many times I don’t know how to react in an appropriate way. Interactions become awkward and forced. People become uncomfortable in my presence, and sometimes it leads to weird or even offensive comments.

People in the service industry especially don’t always know how to speak to me. I will get completely ignored or they will over compensate and treat me like a child. Their voice will go up and start to sound “sing songy” and speak incredibly slow. I usually just give them the benefit of the doubt and answer their questions politely. Sometimes I will in the same “sing songy” way, say that I am not a child and that I can do whatever it is I am trying to do just fine.

However, I think from now on I need to be more direct and tell them what they are doing is offensive and hopefully change the way they think of people with disabilities. Like I have said, I am new to this; I am learning, too. 

It isn’t everyone. Some people treat me just like anyone else and that is wonderful. I get up to the counter, place my coffee order, pay, get my coffee and I’m on my way. Anonymous, quick and I end up with coffee. Just the way it should be. I’m not looking for any special treatment. However, I know that just by being the way that I am, it is going to happen. People are going to rub my shoulders and tell me how special I am. Yes, this happens. People are going to try to grab my arm and help me across the parking lot. I get it, they want to help, but it throws me off balance and makes it worse. I politely decline, but some people are persistent. Finding that balance of being polite and wanting to smack them away with my cane has been difficult. 

I have even had grown adults mock my movements. Most recently it happened while I was at lunch with a friend. It was awkward and weird and offensive. My friend and I were both so shocked by what transpired we didn’t know what to say. Another patron approached our table and made small talk before ultimately making a twitchy face and copied my posture and made weird comments about hearing loss and dementia. I honestly don’t know what this person was trying to say to us or why they did what they did. It wasn’t done in an intentionally cruel way, but it was definitely offensive and I said nothing. I smiled and laughed awkwardly.

I wish I would have questioned their motives. Did they think I was just making a face? Did they know that I have no control over the movements of my body? Were they copying me on purpose, or do they think people with dementia also have twitchy faces and twisted necks and bodies? I will never know, but I wish I would have asked. I wish I would have said, “What are you doing? Are you making fun of me? This is my body and my face, and what you are doing is not cool.” I wish I would have said something to make them think about what they had just done. I chalked it up to their own ignorance and I laughed it off, because that’s what you do. However, I wish I would have said something more. I am still learning. 

I am learning how to be in this new body of mine. I have had to learn how to react to it, and now I have to learn how others do as well. It isn’t always pretty, and it isn’t always nice.

Follow this journey on I Need This Like I Need a Hole in My Head.

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