One in four adults in the U.S. are living with a disability, but you wouldn't know it given the lack of representation in the workforce, Hollywood, and media coverage. Voices of Disability celebrates the real stories — not the stigmas or stereotypes — of this dynamic and vibrant community of individuals.
My fiancé Macey and I had already toured a couple of wedding venues on our list when we drove to Gloucester, Massachusetts in mid-November to see a historic castle museum. On the way there, we snaked through twisty roads covered with leaves that made the entire scene look like the burnt orange sun touching the horizon at sunset. “It’s too bad we’re not having a fall wedding because this is beautiful,” I said. “I want to stop and take photos.”
“We’re already late,” Macey reminded me, and I took one last glance at the tree canopy before stepping on the gas.
By the time we actually parked at the castle, I was pretty much sold on the venue. It checked many of our minimum requirements: It had an oceanfront view, it was in our budget, and it wasn’t completely booked for either the summer of 2019 or 2020.
One question remained and I asked it when we met with the castle’s event coordinator: “Is this venue accessible?” Eyeing the tight entrances and stone steps, I guessed I wasn’t going to be met with the response I wanted.
“Do you have many elderly guests?” she asked. I wasn’t shocked that she assumed neither my fiancée nor I cared about accessibility for personal reasons. When I don’t have my bright lavender cane with me, my genetic connective tissue disorder, Ehlers-Danlos syndrome, becomes invisible. And people can’t tell at a glance that I’m autistic, either. I’m two completely different people on the train, at the park, and on dates depending on if my cane is with me or not — and people are quick to make assumptions.
“We have several guests who have disabilities,” I answered, not wanting to get into details, “and one of our bridesmaids is a wheelchair user. We want to make sure everyone who comes can be fully a part of the wedding.”
She nodded. “Your groomsmen could probably carry her up these stairs…” she gestured as she began to explain where guests would enter the castle for the reception and how those with mobility aids might navigate the route. Macey and I exchanged a look: We only have one man in our wedding party, and the burden shouldn’t be on our friends and guests to make do with less-than-ideal accommodations.
We both said nothing, but asked several more questions that led to learning there was also no wheelchair-accessible bathroom on site, with a vague explanation about how a shuttle could get guests to an accessible restroom down the road. Doubts began to creep in. What if someone needed to use the bathroom urgently? It wasn’t fair to invite someone to my wedding and then tell them they were at the whim of a shuttle just to pee.
When we recapped our thoughts about the venue later in the car, we both disappointedly took the castle off the top of our wedding venue list. We only had a few requirements, but accessibility was paramount. With my disability, I can get around most places fairly easily with or without my cane, and I could climb the castle’s steep stone steps and use its small, old bathroom. But not all our guests could, and that matters.
Throughout the wedding planning process, I’ve felt most comfortable with vendors who don’t make assumptions about my or my guests’ abilities and who work with their couples to make them feel seen and understood. “The wedding industry would benefit from simply asking questions,” says Andrea Eppolito, a wedding planner in Las Vegas, Nevada, who is a Certified LGBTQ+ Inclusive Professional through Equally Wed Pro, a company that provides LGBTQ+ inclusive wedding, hospitality, and event professionals. “A simple statement of, ‘We want to make sure that our team does everything in our power to make you comfortable as we move through this process. How would you like to be referred to, listed, accommodated? Is there anything else you would like our staff to know?’ will open the door and give couples the opportunity to express themselves and ask for help in a very safe and secure environment.”
As a queer disabled person, I know exactly what it feels like when my access needs aren’t taken into account — and it comes up frequently. Despite the fact that the Americans With Disabilities Act was signed into law in 1990 and the ADA Standards for Accessible Design outlines what makes a facility accessible, many businesses — wedding venues included — get away with remaining inaccessible because they were built before 1991. While the disabled community is often very thorough in making sure events are accessible to everyone, it’s common for non-disabled friends and family to think the burden is on us to voice our own needs. Macey and I decided that our wedding wouldn’t be like that. We would be intentional in our accessibility planning from the beginning so every guest would feel welcome and supported. And we would provide that information readily on our wedding website, so guests can plan in advance without worrying about their access needs.
Fortunately, just as we were beginning to give up on the idea of getting married in the summer of 2019 — a little over 10 years after we started dating — we toured an accessible restaurant venue on the beach in Provincetown, Massachusetts and fell in love.
While the grounds weren’t as elaborate as a castle, we liked that the restaurant was known for serving the LGBTQ+ community, and it is special to us because we attended a drag show there the weekend I proposed to Macey last year. But meeting with the event coordinator, Keith, was what really sealed the deal for us. This would be our wedding to design, he explained. There was no pressure to make it feel traditional, or for us to spend additional money on cake-cutting fees or other extras that venues often charge for. The entire experience was customizable: It could be a black-tie wedding or completely casual.
We left the venue knowing that if we had our wedding there, it would be our wedding as we imagined it: None of the frills of the Newport venues we toured, or the unhelpful responses about access. The bathroom was accessible and so was the adjoining hotel, and Keith was willing to work with us to make the oceanside ceremony comfortable for everyone. He also completely respected all my repetitive questions because I have a hard time staying organized with so many intricate wedding logistics. We set the date for September 14, 2019 and shared the news with our friends and family.
Turns out, finding an accessible venue was only the beginning. Planning an entire wedding as a queer and disabled person was harder than I expected, even in a place as socially progressive as Massachusetts in 2019. Macey and I have been extremely privileged that we haven’t been turned away by a single potential vendor because we’re an LGBTQ+ couple, although the fear pops into my mind every time I send a message about cake toppers or guestbooks or decorations. But we do encounter heteronormative messaging and spend extra time on every step of the process to check if our vendors are LGBTQ-inclusive.
“If event professionals could be more inclusive and caring in their intake forms, that would take a lot of the stress off the couple and clients,” says Kirsten Ott Palladino, editorial director and cofounder of Equally Wed*, an online LGBTQ+ wedding magazine and directory, and author of Equally Wed: The Ultimate Guide to Planning Your LGBTQ+ Wedding. [Editor's note: Leary is currently a senior editor at Equally Wed.] “Of course, you'll want to be gender-neutral in your description of the couple, leaving off bride, groom and any other gendered words, as well as asking what pronouns your clients use.” She explains that asking for clients’ pronouns accomplishes two things: For one, you find out how to address them, and it also signals that you’re a space where nonbinary and gender-fluid people can feel comfortable.
Macey and I looked for this kind of inclusive language, along with other signals that a wedding vendor might be LGBTQ+ and disability-friendly: Were they listed in the Equally Wed directory, or did they take the LGBTQ+ Inclusive Certification Course? Did they have photos of LGBTQ+ couples or couples with visible disabilities on their website or social media? Did they mention accessibility on their website or in marketing materials? If they offered goods or services, did they show them used by a variety of couples? I paid attention to small details on Instagram profiles, like whether vow books came with the words “his” and “hers” already embossed on them, and if there were options for customization. We aimed to hire as many LGBTQ+ vendors as we could, which was why we chose to get married in Provincetown, Massachusetts, a local hub for the queer and trans community.
Accessibility was a go-to question to determine if people were disability inclusive, and it mattered most for major vendors involved with the day-of wedding logistics, like our venue, wedding coordinator, and our photographer. I found our photographer, Melissa van Ruiten, using Equally Wed’s vendor database in August 2018 when I was searching for a professional to capture my proposal on camera. She had photos of LGBTQ+ couples on her website and social media and highlighted that she’s an LGBTQ+ friendly photographer. When we spoke on the phone, I got the sense that she doesn’t treat LGBTQ+ couples “just like everyone else” the way many wedding professionals claim, but that she understands there is a history of trauma and struggle underlying our community and would show up to fully support us.
Macey and I took engagement photos with Melissa in May and I let her know that I wanted to have my cane in some of them. It’s an important part of my identity and our relationship, and after spending an entire year looking at photos of various weddings, I wish I could see more relationships like mine: Two LGBTQ+ people, one or both with disabilities, celebrating their love.
I wanted to share that visibility with other young, queer people with disabilities. Melissa helped me include my cane in a way that felt natural. A few years ago, I would’ve done anything to hide it and keep my disability invisible, but she encouraged me to hold it as I kissed Macey’s forehead in the Cypress Tree Tunnel in California. When I saw the photo for the first time, I felt pride and love — disability pride, LGBTQ+ pride, and the love that Macey and I have for each other and for ourselves exactly as we are.
As our wedding date grows closer, I’m starting to notice why accessibility is so important to me and how challenging it is to plan a wedding with a disability. It isn’t just about making sure that our vendors are inclusive and the wedding is accessible. Events like this are exhausting by nature. Ehlers-Danlos syndrome causes widespread, chronic pain in my body, especially if I overexert myself. And when I’m overwhelmed, I start to lose executive functioning skills like memory and planning because of my autism. That’s where having considerate vendors and a supportive community has been essential, because there are often days where I need to step back from the to-do list.
“It's important to remember that it's hard to ask for help when so many of us are tired of asking for help,” says Palladino, who is hearing-impaired and needs wedding vendors to speak clearly and face her during meetings. “We've done it over and over, and our requests aren't always met with understanding attitudes or even friendliness. We just want to feel included. The more you can do for your clients to make them feel like they're wanted and that their needs are valid, the stronger professional relationship you will have, and the better the experience will be for everyone.”
While we planned most of our wedding, our month-of wedding coordinator, Contagious Events, has helped us figure out beach accessibility and reception seating to guarantee that all of our guests have somewhere to sit. Macey’s mom and aunt planned our wedding shower, making sure the event was accessible and included vegetarian and vegan meal options. Many of our friends and family members have provided advice or helped find information when we’re both burned out from dealing with a million logistics at once.
One of the most compassionate things our community has given us during this planning process is understanding. We forgot to include self-addressed and stamped envelopes with our invitations for RSVPs, and people reassured us that it’s not a big deal. It’s easy to forget traditional wedding etiquette when your main concerns are staying pain-free and making sure your wedding avoids all the cisheteronormative bullshit. We’re constantly dodging other people’s expectations — for instance, I’m not wearing a white dress, we’re not having an open bar, and we have shared wedding attendants. We’re trying not to exhaust ourselves with banal wedding rules, but it’s a lot easier when we have supportive people in our lives to assure us that it’s fine to do so.
Wedding planning can be an immense amount of pressure, but we’re having as much fun as we can with it. Sometimes that looks like ignoring the to-do list to go to the beach or watch Shark Week. Other days it’s knocking off as many to-dos as we can, like heading to City Hall to fill out marriage license paperwork or going through the RSVP list to hassle anyone who hasn’t responded. Our relationship is about more than the stress of perfection—or even the stress of getting access to the idea of perfection. When it comes to our wedding, we’re doing it our way.
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Voices of Disability is edited by Kelly Dawson, a disability advocate who was born with cerebral palsy. She has spoken about her disability on the popular podcast Call Your Girlfriend, and written on the subject for Vox, AFAR, Gay Mag, and more. Find her work at kellymdawson.com.