Caregivers are not heroes

When you are out in the field, in interviews, assume neither ill intent nor devotion or “heroism” when it comes to caregivers, including family caregivers (see Sources). There are many reasons people take caregiving jobs, from wanting to make a difference in the lives of others, to just needing to pay the bills. (Contrary to received wisdom on this topic, sometimes caregivers with the latter motivation are better than those with the former, or at least, easier to work with. In my experience as a longtime user of caregiving services, many people go into it wanting to change people’s lives, but what many care recipients want most is actually stability and consistency — we care recipients need caregivers’ assistance to live the lives we already have. This difference in expectations can cause tension, resentment and hurt feelings on both sides.)

 
We, as a society and as journalists, like to think that the safest place for a disabled person is with family members who care for them, but unfortunately, that’s not always true. In fact, statistically, the opposite is the case[1]. Disabled people are more at risk than the general population for becoming victims of homicide, and those homicides are more likely to be committed by loved ones in a caregiving position than anyone else. You will likely be familiar with that famous journalistic adage about fact-checking: “If your mother says she loves you, check.” For disability reporting, I’d change the phrasing slightly: “If a parent says they love their child, check.”

 
When I read the sentence about checking whether someone’s parent loves them to a colleague, she asked me, “How do you check?” This is a great question. Of course, we never truly know what’s in someone’s heart, but, as reporters, we often analyze the credibility of a source before, during and after interviews. We can, for example, begin to see whether a caregiver has the disabled person’s best interests at heart by observing their behaviour when interacting. For the example questions following, I use the terms “disabled person” and “caregiver” rather than refer to “loved ones” or family or friends, thus these questions can apply equally in family caregiving situations and to professional caregivers.

Does the disabled person’s caregiver…

1. Centre their own well-being in their responses, or that of the disabled person?
   
   
2. Allow for different interpretations of the facts if the caregiver and disabled person are being interviewed together?
   
   
3. Respect the time and energy that the disabled person is putting into a media interview (e.g., by adjusting routines or practices around the disabled person’s needs) or insist on proceeding with their own tasks even if the disabled person they care for appears uncomfortable?
   
   
4. Let the disabled person they care for speak or cut them off? Interrupt or contradict the disabled person? Seem to “feed” them answers or attempt to “soften” the answers the
   disabled person gives?
   
   
5. Clearly have their own narrative that they wish to present to the journalist, to the point of cutting off the disabled person or undermining their credibility, or let the disabled person’s words and views be presented without a filter?
   
   
6. Make the interview about caregiver burden and caregiver well-being, even if the story is not about that? Speak often, particularly in front of the disabled person, about how difficult it is to “manage,” “handle” or “deal with” the disabled person? Speak disparagingly of the disabled person, particularly in front of the disabled person? Undermine the disabled person’s negative response to such disparaging speech while exhibiting an outsize negative reaction to similar language from the disabled person about caregivers?
   
   
7. Talk about how certain things are “not allowed” or threaten to report a disabled person to a higher authority, such as a team leader, case manager or care coordinator?
   
   
8. Appear frustrated to be there, or cooperative and patient with the process? Treat the disabled person’s belongings with respect or bang them around, treating them roughly and making distracting noise? Walk through a shot, or otherwise interfere with the interview process?
   
   
9. Speak for the disabled person, or support the disabled person’s communication with you in your role as the journalist?
   
   
10. Make sure the disabled person is comfortable and safe in the interview environment? Advocate for the disabled person’s needs if required?
    
    
11. Disclose private information about the disabled person that the disabled person has not shared with you, without asking permission from the disabled person?
    
    
12. Insist that they are the only person that truly knows the disabled person and the only person who has the disabled person’s best interests at heart? Appear concerned about the disabled person being influenced by others?
    
    
13. Appear to take the matter seriously if the disabled person expresses concerns about the care being offered?
    
    
14. Undermine the credibility of others or attempt to isolate the disabled person? For example, does the professional caregiver insinuate that the disabled person (or another significant person in the disabled person’s life, particularly a mother or other close female family member) might be mentally ill or otherwise attempt to undermine their credibility? If the caregiver is a family member, does the caregiver insinuate that another significant person in the disabled person’s life might be mentally ill or otherwise attempt to undermine their credibility?
    
    
15. Seem to have a worldview in which there are “good” disabled people, who do what they’re told, and “bad” ones, who make trouble? Get other disabled people to speak disparagingly of the “bad” disabled person or insinuate that they don’t want to be like them?

And, finally, does the disabled person look to the caregiver before answering questions? Does the disabled person and/or the caregiver appear afraid to answer questions or seem worried about retribution from a higher authority? Do the disabled person and the caregiver appear relaxed in each other’s company or afraid of each other?