Not considering disability does harm

Why is it important to apply a disability lens to our work? For one, because not framing disability stories as such has consequences. Have you ever read a story about “hospital overcrowding” due to high levels of “alternate level of care patients,” “ALC patients” or “bed blockers”? Consider this headline[1]:

• Overstressed hospital nurses say they can’t provide adequate care to patients, citing “bed blockers” as the reason.

For whom is the reader invited to have sympathy? Who is at fault? Who bears responsibility for fixing the problem?

Normally, such stories talk about how people stay in the hospital longer than they should because there is no space available in another setting, such as long-term care or rehabilitation facilities. But again, a “bed blocker” becomes a bed blocker only because the person described as such is temporarily or permanently disabled and the appropriate care or supports to meet the patient’s needs are not available in the system. The system has limited capacity and is not meeting the demands on the system. Often, the sources in these stories will talk about how “we” need to “move ALC patients into more appropriate settings.”

 
But if the stories were written, accurately, as being about disabled people having nowhere to go to receive appropriate treatment, would that change your understanding of “bed blockers” and feelings about them? Consider a headline like this:

• Woman has nowhere to go after car crash leaves her paralyzed — and she alleges negligent hospital care has taken her situation from bad to worse.

Who is the main character? For whom is the reader invited to have sympathy? Who are readers likely to believe is at fault, and who do they think should fix it?

 
Of course, most of these stories do not explicitly place blame on the so-called bed blockers themselves. The same frustrated health-care workers talking about how there are too many “bed blockers” are often quick to say this isn’t the patients’ fault. Instead, it’s the fault of a system that doesn’t give them — the patients, the health-care workers, or both — appropriate support, and/or has limited capacity for such support. But it’s the presence of the patients themselves that is framed as the problem — and we in the media are, at least partly, responsible for that framing. I would guess that I’m not the only one who has wondered, after reading one of these stories, whether some of this problem was due to patients just being stubborn and not wanting to go to long-term care.

 
That was before I found out just how easy it is to become a bed blocker. A few days before my 30th birthday, I (a lifelong wheelchair user) was in a wheelchair cab. The driver didn’t slow down when approaching a speed bump; I bounced up in my chair, and my head hit the ceiling. When I bounced back down into my seat, I suffered a compression fracture of one of my vertebrae. Although painful, this injury, which mainly occurs in older women with osteoporosis, is not considered particularly serious, and most people regain much of their mobility after a few days, though they still suffer pain for several weeks. To illustrate how not-a-big-deal this type of spinal fracture is considered to be: the ER didn’t want to admit me at first, saying that they would give me a few days’ worth of strong painkillers, and I’d be fine.

But because of my disability, the injury was far more debilitating for me. I stayed in the hospital for three weeks. The first time I tried sitting up in bed, with the help of physiotherapists, nurses, and my personal care attendant, the pain was so bad I nearly blacked out. I had to stay in the hospital until I was able to transfer from my bed to my chair or my chair to the toilet with the help of two people. (Normally, I need only one.) I was considered an alternate level of care patient almost from the first day of my stay in the hospital, and the doctors there considered sending me to long-term care for “convalescence” more than once. However, had I gone to long-term care, even on a temporary basis, I would have risked losing my apartment due to social housing rules and ended up stuck in the long-term-care system for who knows how long. My independence, and with it my life as I knew it, was almost shattered because I hit a speed bump.

 
Many people have stories like this. It’s a lot easier for disabled people to become more disabled by a temporary injury and have a harder time bouncing back, both because our physical capacity is already limited, and because injuries can affect our eligibility for the services and supports we need, putting us in danger of becoming homeless even with a temporary stay in long-term care. Even a small injury can have catastrophic consequences, and those consequences can build over time.

 
In addition to questioning our understanding of “bed blockers” and emotional reaction to framing disabled, sick and elderly people as “bed blockers,” perhaps journalists should also spend some time investigating why long-term care homes are the only option for many. Could there be more community supports for people aging in place, for example, so that people won’t be forced into long-term care because of injury or illness? If it’s a given that people don’t want to live in long-term care homes, yet demand for spaces is so high that there aren’t enough spaces, we as journalists could stand to investigate this contradiction more deeply and rigorously.

Another way that failing to consider disability does harm: we fail to consider disabled people as citizens, as part of the community. Who is considered part of “us” when a source, inevitably, says that “we” need to do something? Who is the implied “other” and not considered part of “us”? Who will do something and who will have something done to them? Each media organization has its own assumptions about who forms part of its audience and who does not. Many millennials, my age group, will remember, during the early days of the COVID-19 pandemic, encouraging our Boomer parents to follow rules about social distancing. Our parents would respond blithely that the public-health officials on TV said that only “high-risk groups” needed to worry and that they (the parents) were healthy, despite knowing they belonged to the demographic and had many of the diagnoses those officials said put a person in danger.

 
There are likely many reasons for this, but I think one is that public-health communications constructed, and continue to construct, the idea of “the vulnerable” as outside the audience, and millennials’ parents knew that they were part of the audience. After all, broadcast news had been talking to them their entire lives. They were “you and me” and “most of us,” not “others” and “those with underlying conditions.” (Incidentally, the lengths public-health people went to in order not to use the word “disabled” were, uh, something. We’ll talk about this more in Language.) These senior-citizen parents were the ones who “checked on their vulnerable, isolated neighbours,” not the vulnerable neighbours. They were the helpers, not the helped. This led, and continues to lead, many people to underestimate their own risk profile.

COVID-19 is a much bigger discussion, but I wanted to highlight the fact that framing disability as outside the community, as not part of “us,” doesn’t just mean ignoring the needs of people we already see as disabled. It means not seeing the needs of people we might not recognize as disabled — including, perhaps, ourselves.