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The Culturephiles

A Breath of Fresh Art

Marie Majors writes about experiencing arts and culture with a disability

Marie Majors, smiling, outdoors with trees in the background.

Marie MajorsProduct Marketing Manager, Tessitura Network

TitleA Breath of Fresh Art

Published6/26/2019

Read/View Time4 min


While the love of arts and culture has been a theme throughout my entire life, a recent medical event has reinforced its importance to me.

A little over two years ago, I was riding the Duschene Incline in Pittsburgh one day and struggling to breathe the next. Within six weeks my breathing had deteriorated to the point where I was hospitalized. After a lung biopsy, I was diagnosed with a rare interstitial lung disease. This disease was causing my body to reject my lungs. I have some permanent scarring and currently require supplemental oxygen with most movement.

What a huge about-face from my previous everyday life. Living with a physical challenge was a total unknown for me.

I quickly made a commitment to make the most of each day but I needed to figure out how to do this with my new limitations. The moments that defined my life centered around family and friends, but the running themes in my memories were experiences in art and culture.

The purpose of art is washing the dust of daily life off our souls.
— Pablo Picasso

Through my experience, I’ve learned a few things about engaging in arts and culture while having a disability. While I don’t speak for others in any way, I would like to share my personal experience with you.

Attending events is a bigger challenge than I expected.

In the past, it was so easy to purchase tickets and show up the day of an event. However, with an illness or disability, showing up requires a lot more planning not only for me but also for those attending with me. 

The most challenging part is just getting to my seat. With this illness, high humidity or days with a high allergen count can affect my mobility so that even with the best-laid plans, things may not work out at the last minute. When I see someone else with a disability at an event, I now recognize what it took for them and their companions to be there.

A band performs on stage under multicolored lighting

Attending a concert

Not every patron with a mobility issue uses a wheelchair.

For my own situation, I require an oxygen concentrator to walk or navigate stairs. It is so very helpful to see clear signage about elevators or other services that patrons with disabilities may require. When purchasing tickets I frequently look at a seat map to get an overview of the venue, so I appreciate when things like stairs and elevators are clearly labeled.

Drop-off and parking are always puzzles.

Parking has proven to be the hardest thing to figure out. It is important to know where to find accessible parking and drop-off areas. If companions drop a patron off at the front door, they then have to go park the car — leaving the disabled person to wait curbside or navigate themselves inside. Finding parking and navigation information on organizations’ websites is so helpful.  

Attending an event shows that it’s important to me.

It is so much easier to stay at home and watch television. There will come a time when I don’t have a choice, but until that time, I will be there whenever possible. Once I’ve taken my seat and the show begins, everything that went into getting me there becomes worth it.

My husband and I attend many concerts from 70’s and 80’s bands, and I go whenever I can because many of these concerts are final tours. Another highlight was seeing Hamilton at the Kennedy Center last summer. It was a stormy night and I had so many reasons to stay home, but when would the opportunity come again? The night that we saw The Heiress at Arena Stage, the road conditions were icy. I love this play and didn’t want to miss the opportunity to see it live.

Every event has had some challenges. But whenever possible, I will figure it out.

In the audience for Hamilton at the Kennedy Center

The impact of an event lasts far beyond the drive home.

Spending time in arts and culture is restorative, and it becomes even more so with a disability. The memories can lift my spirits during tougher times. A great experience can be medicine for those times, and my memories have helped me immensely.

I have developed a deeper appreciation for the experiences that the arts and culture community provide. This experience has also strengthened my pride for the work that our member organizations and our team at the Tessitura Network do every day.  

Last month I attended the DC Tessitura User Group meeting. It was my first time engaging with the Tessitura community since my illness began. When we toured Maryland Hall, new friends rode the elevator with me so I wouldn’t be alone. Everyone’s kindness made it a great day and reminded me how much I love this community.

I have not limited myself to sitting in the audience or walking around a museum or aquarium. I began to study vocal performance again and work with a voice coach. Singing is a widely adopted therapy for lung patients, as it strengthens the diaphragm and helps to increase lung capacity. Will I make it to Carnegie Hall? Stay tuned.

At the moment, my autoimmune disease is stable and I am feeling fantastic. I don’t know how the rest of this journey will unfold, but I know that arts and culture will continue to be a big part of what I consider a life well-lived.

   

Andrew is on sabbatical. This is the fourth post in a series featuring guest writers from the Tessitura team.

 

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Marie Majors, smiling, outdoors with trees in the background.

Marie Majors

Product Marketing Manager

Tessitura Network

Marie Majors is the Product Marketing Manager for the Tessitura Network.

 Marie has worked at the Network for twelve years and lives with her husband in Frederick, Maryland. When not singing, she’s searching for new experiences in arts and culture. 

 

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