The Importance of Finding People Who Recognize My Worth

We live in an age of rumors and widespread gossip. Many people seem to be mudslinging, and we’re all covered in it.

Gossip didn’t start with the rise of social media, which is just a new medium through which it can slowly drip into our lives. 

And it doesn’t just happen between two or more people. It can happen when that soft voice inside of you tells you lies about others. That’s called forming preconceptions and stigmatizing people you don’t know.

It’s my life’s challenge to get people to look past all my medical equipment and see everything we have in common. If everyone could wash off the muddy preconceptions that we all have, we would see the treasures inside one another, and all that others have to offer. 

With my multitude of imperfections, I’m not saying that I’m any true diamond. You know who truly sees my worth, though? My senator friend that I’ve been talking about. For the past two columns, I’ve been teasing you all about revealing his name. Would you finally like to know? Drumroll please …

He is North Carolina Sen. Thom Tillis! 

Ari and Sen. Thom Tillis in Washington, D.C., in 2019. (Courtesy of Sen. Thom Tillis)

After meeting my mom and me for the first time on the streets of Salisbury, North Carolina, we stuck around for his town hall meeting. Seconds before he started speaking, he looked right at me. His look seemed to ask, “Are you ready to hear my speech?”

He didn’t give me that common stare I get when people are wondering if the lights are on inside my head. Instead, he actually cared about my views on what he was going to say.

He wasn’t just giving us lip service when he told my mom and me 20 minutes beforehand that he wanted to help me keep my services. Probably 90% of legislators have told me that. However, many of them don’t roll up their sleeves and personally get involved in the fight with me.

Getting involved personally turns out to be what Sen. Tillis does best. How many legislators do you think have called my mom and me without delegating it to a secretary? Not many. During one of the battles to save my services, he pleasantly reassured my mom by calling her at work, saying, “Thom Tillis here!” At the same time, he almost surprised my mom to death when she heard his voice!

Many times, the senator and his staff have sifted through complicated policy with us. Together, we have found a way for me to keep my physical therapy three times a week. Everyone initially told us this was impossible. Anything is possible when a team has enough determination.

My most memorable visits with Sen. Tillis occurred when he invited me to Washington, D.C., in 2015 and 2019. For both visits, he met with my mom and me in his office for 30-45 minutes.

After our long meeting together during the second visit, we were both headed to the Senate chamber for a vote. Although it was far, he did not keep his distance from me. For another 45 minutes, he walked by my side. It was at least a mile or two!

He could have walked with his own entourage or other senators, but instead he chose to roll with me and my wheelchair. Again, he threw away all preconceptions and got on my level. It almost felt like a member of nobility walking with a commoner. 

Do all the preconceptions that people form against me and others with disabilities ever get me depressed? Absolutely. It really is as fellow SMA News Today columnist Katie Napiwocki describes. Those “wild green thorns” of gloom can choke the will of advocacy right out of me. Yet, I know that my advocacy bears a lot of fruit that nourishes my soul, along with others. Finding people who respect my worth is part of that fruit. 

As I said in a previous column, Sen. Tillis advocated for me to be vaccinated early. Once we were both fully vaccinated, he came over to my house. It was like the first day we met. He wanted to know what my views were, especially on Medicaid issues. He proposed working with me to spread the message that more nurses are needed in home healthcare. Now that’s a form of gossip that I hope catches on.

Stay tuned for updates on that in future columns, as well as the treasures I find in other people!

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.