Surround me with friends in a casual setting and I’ll enjoy myself and my company, with laughter and gab washing over us in a bright, babbling feedback loop. But transplant the same crew to a big, buzzing room for a show or event, where spirits are flowing and the living is large, and I turn into the invisible man. Energy is up, excitement is up, and the party’s blowing the roof off the place, but I’m down here — at butt-level — in my power wheelchair. You can’t hear me, and I can’t hear you.
Once the invisibility sets in, you may hear a persistent hissing. That’s my mojo, slowly leaking away. The buffer zone around the wheelchair grows stronger. Everyone is exchanging hugs and handshakes until it comes to me, then it’s awkward head-bobs all around. Now the mojo is almost gone. Then we have that thing where the wheelchair doesn’t fit in, under or around the furniture. I’m a square peg, with square wheels. Get me out of here.
There has to be a better way to be seen and heard as a wheelchair user in a lively social setting. I’ve benefitted from a new seat elevator on my wheelchair that allows me to rise into the conversation-sphere, but what do you do when you don’t have one? How can we avoid socially disappearing? How do we prevent being shunted aside like a piece of furniture?
Step 1: Practice and Enunciation
At the start of an evening I can sound hale and hearty as Robert Goulet, but long before intermission, I’m reduced to Donald Duck. With my MS at about C4 level, I constantly battle slumping and feel as if my diaphragm won’t expand enough, so that I hitch my shoulders for air. Add background noise, and I typically wind up shouting and short of breath, with my voice shredded.
As an incomplete quadriplegic with cerebral palsy, and a power wheelchair user, Jerri Voda understands such vocal problems from a unique perspective: She was also a speech and language pathologist for over 30 years, most recently at Shirley Ryan AbilityLab in Chicago.
“The challenges that [wheelchair users] face [include] not being heard, and not being understood,” Voda says. “Those are two different things.” Because of physical support and control issues, some wheelchair users face challenges being loud enough, and once they are loud enough, they might not be understood due to ambient noise and other factors. “I still get cabdrivers who will say to me, ‘I heard you, yes, but what did you say?’ Now I have to repeat myself.”
On top of all that, Voda has been working through the aftermath of a stroke for the last year and a half, including extensive rehab to rebuild her speaking abilities.
“I’ve had to do a lot of important control exercises like deep breathing,” she says. She has worked with an ear, nose and throat doctor, a home health speech therapist and others
Breathing Exercises
Practice rhythmic or box breathing: Inhale for a count of four or five, and hold breath for the same count. Exhale over the same count, and hold for the same count again before inhaling. Position your hand on your upper belly/diaphragm throughout, making sure the belly pushes outward as you inhale.
Count numbers out loud, as far as you can go on a single breath.
Practice breathing exercises while stretching out chest and shoulders in a standing frame or while lying on a pillow positioned between the shoulder blades. Get doctor’s clearance first.
Try apps for deep breathing.
Clear and mindful articulation is our friend. “Be careful how you pronounce the words. It’s also how [wheelchair users] piece out their speech,” Voda says. She advises paying attention to how we parcel out words and phrases. When phoning for a cab, if what she says is not clear enough to the robot that answers, she has to wait to get transferred to a live operator to complete her order. “It’s pretty frustrating sometimes, but it’s part of our new world, right?” she says. “You have to know to speak slowly sometimes if they don’t understand what [you’re] saying. … When you’re talking, you constantly have to think about, ‘Do they understand this, or do I have to piece it out or spell it or project it in a different way?’”
This squares with my 25 years using voice recognition, during which I’ve never scored close to the accuracy claimed by software companies or other users. But it wasn’t so long ago when I realized that volume isn’t my only problem: It’s also articulation. When navigating long documents, for example, after dozens of times saying “page down,” I often slur it into “paishtown.” That’s when my wife chimes in from the peanut gallery, “What is it you’re saying?” and Dragon simply shrugs its shoulders. #%@$!
Tech tools have a place too. For power wheelchair users with the opportunity, Voda recommends getting a seat elevator. The Centers for Medicare & Medicaid Services finally started covering seat elevators in 2023, so you shouldn’t have to pay out of pocket. She also encourages use of a voice amplifier, like the one she used herself, the Zoweetek ZW-Z258 Portable Mini Voice Amplifier, available for $14.40 online. Finally, look for apps to develop deep breathing, available for phones and computers.
Step 2: Owning It
Now that we’ve learned how to project vocally, how can we also project our presence in a room? If we go around “waist-high in the world,” as the late author and wheelchair user Nancy Mairs said in the title of her 1997 memoir, how can we do so without being overlooked? I might add: Who knows how to stand out in rooms? Who has charm, personality, looks — and can turn them on with the flip of a switch? Who wants complete strangers, whom they can’t even see beyond the stage lights, to stare at them in their wheelchairs? What strange tribe is this? Actors, I say, give me actors! If all the world’s a stage, then show me how wheelchair-using actors make that stage work for them. Can they help a guy with two left tires like me?
For stage and screen actress Regan Linton, a T4 para, a great time out begins with prep work at home. While getting ready, this former artistic director of Denver’s disability-focused Phamaly Theatre Company is psyching herself up — reminding herself that, as a creative individual who uses a manual wheelchair, “somebody’s going to be really lucky if they get a chance to talk to me tonight.” At the same, she’s also crafting her appearance.
“[Presence] comes through a variety of things,” says Linton, a United Spinal Association member. “What are the nonverbal things you’re doing?” Your public persona includes the way you move, the way you sit, and the way you smile — or don’t smile. Also, what you wear, whether you got your hair done or beard trimmed, and how you’ve decorated your chair. “Something that makes you feel really good, so that’s the energy that you’re bringing into the room,” she says. “It’s how you are showing up in the world, and then … people might notice and be curious.” Inviting attention to you flips the power dynamic: Rather than ducking unwanted stares, instead you’re presenting something different or provocative. You become your own conversation starter.
Continue defining your own experience by sizing up the room and choosing where you want to make your space for the evening, instead of getting lost in a scrum and having to yell up to people. No, let those people come to you. “If I end up over on the side of the room, then fine, that’s where I end up,” Linton says. “A lot of this is letting go of what those expectations are and saying ‘No, I can make my own expectations in this situation. … I’m an interesting person, I’m going to draw people to me.’” The approach seems to jibe with the name of her New Mobility column, Own It. “One of my principles is claim your space. You have every right to,” she says. “You’ll be really surprised by the people who will gravitate toward you.”
Step 3: Show Some Character
As an actor and producer — and NM’s social media director — Teal Sherer has played some memorable roles, and she uses them in a uniquely social way. “I draw from different characters I’ve played — what it feels like when I’m confident, when I feel good in my body — and I grab onto that feeling,” says Sherer, an L2 para who uses a manual chair. Her favorite one is an intimidating goth who is so fun to channel because she runs deliciously counter to the “poor, innocent girl in a wheelchair” stereotype.
Sherer says we nonactors can explore alternate sides of ourselves too, through improv or other creative courses. One accessible and affordable option is Amy Poehler’s online workshop, Prepare To Be Unprepared, about how improv can improve your life and your confidence. Another confidence booster she suggests is to invoke feelings of disability pride, like how Sherer recalls feeling when she discovered a disability community of her own in college or when she performed in a mixed-ability dance company.
“Sometimes we do it to ourselves and make a big deal out of something. … I don’t want to go to the party because there’s going to be too many people, but I go and have the best time,” Sherer says. “Sometimes it’s getting rid of all the voices in your head and what we tell ourselves. … Just be present and in the moment and that can just change everything.”
Linton quotes wheelchair-using President Franklin D. Roosevelt’s famous saying, “We have nothing to fear but fear itself.” She says, “There’s a reason when people go out to be social that they drink so much, right? As you roll in, remind yourself that … every single person in this room right now is probably also feeling a little bit of what I’m feeling.”
And if you don’t feel a connection with a particular event or the people there, Linton says, that’s an experience common to disabled and nondisabled folks alike, so don’t take it personally. It’s their loss.
All right, power-voice activated. Anti-invisibility regimen, set. Mojo balloon, re-inflated. I’m getting back out there. You can’t miss me — I’ll be the guy on the left side of the room in the leopard-skin Chuck Taylors.
Sign up for New Mobility’s newsletter to stay up to date on the latest news, products and pro tips for wheelchair users.
Comments