By Stephen Trumper
In my professional circles—editing/writing magazine articles and teaching students the basics of editing/writing for all kinds of journalistic publications—we talk a lot about writers finding their voices, of developing distinct, individual writing styles.
In my volunteer circles, there is a continuing emphasis on using your voice to speak for others who cannot speak for themselves, and on amplifying their inner voices in calls to eliminate barriers to full, meaningful inclusion.
And in my everyday existence of living with quadriplegia, I am always using my voice, a central tool in self-directed care, to explain to PSWs, family, friends, and others what I need them to do at any given time.
Clearly, having a strong, articulate voice plays an important role in my life so imagine my distress when, in early December 2021, I started to lose it. First came raspiness, then hoarseness, followed by periodic bouts of near-total silence. I was (mostly) reduced to whispers.
As a result, my PSWs and community nurses had trouble understanding much of what I was trying to say. My students in our virtual classrooms became used to me calling on my TA to take my place in talking through several multi-slide presentations. And my daughter often became my phone voice, booking rides and appointments, ordering supplies, talking to doctors and more.
What was going on? Here was a mystery for which nobody in my medical circles had easy or quick answers.
Had something associated with my tracheostomy, which I’ve had for 25 years, deteriorated?
Had my inner jowls become flabbier and droopier, suffocating my vocal cords, as I creep closer to my 70th birthday?
Had my old arch-enemies—lung and chest infections—chosen to present themselves in diabolical new ways?
Had our cat got my tongue?
Days, weeks, and even months went by. I tried to be patient, knowing all too well that my healthcare corps were often puzzled by various aspects of medically complex me. Still, through the frustrations of dealing with a devolving voice that hadn’t seen this many changes since puberty, I carried on.
“You should have a chest x-ray.” “OK.” “You should see your Ears, Nose & Throat specialist.” “OK.” “You should take a round of antibiotics.” “OK.” “You should have a bronchial scope.” “OK.” “You should have another round of antibiotics.” “OK.” “You should have a CT scan.” “OK.”
And on and on it went. With each should came another:
“If you have trouble breathing at any time, or find yourself short of breath, you should go straight to your nearest Emergency.”
I do my best to avoid hospitals. Yes, I realize they’re pretty good at saving lives and making people feel better. Indeed, they’ve saved my life on several occasions. Still, the people who work in hospitals are too often rude, dismissive, uncaring, unhelpful, arrogant, tunnel visioned, aloof, overly rigid, and more. An able-bodied friend once wrote: Wouldn’t it be nice to know on entering a medical practice of any kind that you’d actually be treated like a valued customer?
If you are a person with a disability these flaws in the helping professions—and in the system itself—are exaggerated. Folks like me are medically complicated. It takes time and empathy to understand how our inner workings really work. Too often assumptions are made about us without ever talking to us. Too often we are ignored and denied assistance when it’s immediately needed. Too often our need to bring in our own support people and adaptive equipment are questioned, even denied.
No wonder the thought of going to a hospital’s Emergency fills me with such dread. Yet there I was, on Good Friday, in month four of my vocal distress, sitting in an accessible Uber (so I could bring my wheelchair since ambulances don’t have room for it), headed to my local Emergency.
A week earlier I had noticed that breathing took more effort. I hadn’t been too worried, though. I had pushed through similar situations many times before. But when I woke up on Good Friday my oximeter numbers were surprisingly low. I tried not to panic as the Uber hurtled to hospital. I was fearful of what awaited. Hospitals are seldom disability-friendly in normal times. How bad would they be amid a lingering pandemic?
I would go on to spend 10 days in hospital, a period punctuated by bursts of activity of the poking, prodding, producing kind and occasional out-of-room trips for more x-rays, more CT scans. It was a tough time and all my usual disability-related complaints about hospital “care” increased significantly during my stay.
However, I did get my voice back thanks to strong, targeted antibiotics. The cause of the problem: infections in unexpected places.
Hospitals: So proficient (usually) in fixing people’s problems; so lousy (with exceptions) in treating disabled people with respect.
Stephen Trumper serves on the board of the Canadian Abilities Foundation. He is an independent writer, editor, and teacher.