My Experience With Disability.
I met one of my closest and dearest friends in our Museum Studies graduate program in 2009. Her name is Beth. We bonded over our shared American value of loving Starbucks. Though we were studying in England at Newcastle University, we are both Americans- she from Delaware, and myself from upstate New York. I would tease her about being from such a small state, and delighted in introducing ourselves and where we were from, and have the British ask “where’s that?” not knowing that Delaware was a state. She’d follow it up with 20 Delaware facts in an attempt to defend it’s honor. Things like “Delaware was the first state!” and “Delaware has more chickens than people”.
Everyone knows that New York is a state so I didn’t need fun facts.
While our graduate school program was robust and provided useful information, I can whole heartedly say that I gained significantly more through the experience of studying abroad in a new and different culture. This wasn’t my first time studying in England, I had done a semester abroad in London during my undergraduate studies. But there was something different about traveling alone, unknown, and to a new place verses with a group of other students and friends. Beth and I had gone through the same shared experience, and that bonded us and others in our tight knit group who stay in touch still today over Whatsapp and Instagram. We lucked out and met at a time when technology was starting to enable you to continue those friendships across continents.
Another experience that bonded us was when Beth pushed me around a museum in a wheelchair, for the first time. For a class assignment we had several options for writing a paper, and one of them was to go to a museum and assume the role of a disabled visitor, then write about your experience. Beth had opted for one of the other paper assignments, but I thought this would be fun. So I invited her to help push me in the wheelchair and we went to an art museum that was housed in an old English building. I remember there were heavy doors between galleries that were not automatic, split down the middle and we struggled to get through them. Aside from that, I don’t remember a lot. I was 23 and had little awareness or understanding of disabilities. My youth and ignorance prevented me from taking the assignment seriously.
After grad school I ended up in Washington, DC and a year or so later Beth moved there too. Back in the same city, but with different groups of friends, it would have been easy to lose the bond we had developed over the year we were in England together. But that didn’t happen. We remained close. When I joined a kickball team with coworkers, Beth joined too. When Beth did a Valentines Day pub crawl with her friends, I’d be invited and would tag along. For her 30th birthday that was Harry Potter themed, I showed up in a Gryffindor costume. We traveled to England, Germany, Amsterdam, and Belgium together. And when Beth met a new guy she liked, she introduced us at Nandos in Cleveland park, and a few years later when they got married, I was standing beside her. So in 2017 when I was planning my dream birthday to go to Charlottesville and see Monticello for the first time, of course Beth was coming with me.
Then just days before my birthday, I fell and injured my ankle.
I couldn’t walk on it unless I had a boot on. The boot didn’t take away all the pain, but it made it tolerable. I was determined to go on our trip and not let this injury ruin it for us. I remember going for an MRI on Friday, and then going on our trip Saturday. I met Beth at the metro station with my backpack and the first thing she said was “where are your crutches?” I said I didn’t want them, they’d get in the way, and I’d be fine. Beth was annoyed I didn’t bring them and skeptical that I’d be ok, but we were off.
I really thought it was a sprained ankle. I figured I could just take some Tylenol and the pain would subside. When Beth and I travel, we don’t relax, we read every sign, take every path, and do everything possible. We walk a ton. So around mid-day we had arrived at Monticello and finished the visitor center portion, but hadn’t yet gotten up to the house. I finally said, “ok, let’s ask about wheelchairs”. Beth enjoyed reminding me that this was not the first, but the second time she would be pushing me in a wheelchair around a museum. I had forgotten about the first! Needless to say, I really owe her.
We strugggggled through Monticello. Historic house museums are not known for being ADA friendly. The ground outside was gravel, so Beth would use all her strength and we’d move like a foot. Then she’d take a break and try again, another foot. The house was built in the 1800s… obviously pre-existing ADA. The doorways were too small for modern day wheelchairs. Beth struggled to get me tucked in the small spaces so other tours could pass by us. By the end of the tour, she was exhausted, and I was feeling guilty. We laughed about it. It made for a memorable experience. Sad and feeling a little defeated, we didn’t get to do the outhouses and walk the grounds. Beth promised we’d go back some day.
I hadn’t realized that Beth was in communication with her Mom, a nurse, during the trip, reporting back my symptoms. So when I said I was feeling hot, in Virginia in February, Beth got concerned. She realized I had a fever and something other than a sprained ankle was going on. Her worries were confirmed when I got a call on Monday letting me know that I needed to schedule immediate surgery for a broken ankle, chipped cartilage and torn ligaments. I will now concede that I should not have been walking on it.
And then for the following six months I was in a wheelchair. I found myself, for the first time, disabled.
A disability is a physical or mental condition that severely limits ones abilities to perform major life activities. Many people don’t realize that around 1 in 4 adults have a disability. Each year, around 5% of working Americans will develop or experience a short term disability. The fact is, that many people will develop short or long term disabilities in their lifetime. These are things like mental health issues, heart attack, stroke, cancer, injuries, etc. You can develop or experience a disability at any time.
Having a short term disability was life changing for me. I learned how difficult it was to live with limitations to our built environment, and how difficult it was for my friends and family trying to support me. We were constantly challenged to find accessible restaurants. Some Uber drivers would see me in a wheelchair and cancel the trip. When my Mom was with me, she’d struggle to lift a 35lb wheelchair into and out of the back of the car. At the beginning of my injury I dropped a fork under my coffee table, and there it remained for the next 5 months because I couldn’t get low enough to reach it. Having gone from a proudly independent lifestyle, I really struggled to accept help and the limitations that I was now experiencing.
That experience profoundly impacted me. Fast forward a few years and now as the Director of Visitor Experience in a historic house museum, I’m very aware of the limitations of our site on individuals with disabilities, especially physical disabilities. Last year I became ADA Coordinator certified so that I could gain a better understanding of the law, and where to find answers to our ADA questions. During that process, I was reminded of my assignment in grad school to visit a museum in a wheelchair and write about it. I began thinking of it more and planning something similar for my own staff. I presented the idea to my supervisor and from there, it was pitched to the Executive Director. I got approved to present at an all-staff meeting.
In October 2022, around 85 staff members participated in our first activity-based disability sensitivity and awareness training. I separated people out into 3 groups. One group was paired off and given blindfolds. I provided them with a brief overview of how to guide someone who is blind and give verbal instruction. Another group was paired off and given noise cancelling earphones. The third group was paired off and given wheelchairs.
Then I handed out scenario cards to each of them. They were to assume the role of a visitor. In some cases the visitor came with a certain disability, and a specific interest in visiting an area of the museum. In some cases the visitor had limited mobility, and in others they had no mobility. I provided a story and persona. In one scenario there were two visitors who came together, both who were deaf and their primary language was ASL. They had never visited before and wanted to find the Orchid Garden but needed to ask for directions. In another scenario a group was visiting with Grandpa, a war veteran who could walk approximately 5 steps at a time before requiring the aid of a wheelchair or bench. Then I sent them off and told them to “visit” our museum.
When we got back together afterword's, there was a lot to talk about. I started the discussion with “How did that go?” We talked about their experiences, their challenges, their realizations. We talked about hidden disabilities as well as visible ones. It was great to see staff realizing for the first time what it would be like to visit our museum as some of our visitors do. The training created a better awareness for staff, a deeper understanding of others who have disabilities, and an interest in learning more about what we can do to make the site more accessible. The training was a success and staff have asked to make it an annual activity to keep it fresh on people’s minds.
If you want to be a welcoming institution, it’s important to know how you can be welcoming to ALL your visitors. Know your site challenges, and your offerings. Train your frontline teams to know their accessibility options. Advocate for your visitor’s needs and make sure ADA is part of the conversation. Remember the statistics, that many of us will experience a disability at some point, and if not us, then a loved one. Not everyone has a Beth in their life who will push them through the gravel. So just get rid of the gravel!
